Life of a Bitty Girl

Hey Cinderella

2011-05-08T18:54:00.000-07:00

Maybe it's because of all of the recent royal wedding hype. Or maybe it's because my son has decided that he loves the Disney princess movies. Yes, you read that right. Much to his daddy's dismay, Henry has become infatuated with Sleeping Beauty, Snow White and The Little Mermaid. In defense of his gender identity, he does like the parts with the dragons and other various villains best, but he also doesn't turn away when the princesses don pretty dresses and begin singing of true love. Whatever the cause, I have had a song that I liked when I was younger stuck in my head for the past few weeks.

We believed in fairy tales that day
I watched your father give you away
Your aim was true when the pink bouquet
Fell right into my hands

We danced for hours and we drank champagne
You screamed and laughed when I got up and sang
And then you rode away in a white Mustang
To your castle in the sand

Through the years and the kids and the jobs
And the dreams that lost their way
Do you ever stop and wonder
Do you ever just wanna say

Hey hey, Cinderella, what's the story all about

I got a funny feeling we missed a page or two somehow
Ohh-ohhhh, Cinderella, maybe you could help us out
Does the shoe fit you now

We're older but no more the wise
We've learned the art of compromise
Sometimes we laugh, sometimes we cry
And sometimes we just break down

We're good now 'cause we have to be
Come to terms with our vanity
Sometimes we still curse gravity
When no one is around

Yeah, our dolls gather dust in the corner of the attic
And bicycles rust in the rain
Still we walk in that fabled shadow
Sometimes we call her name

Hey hey, Cinderella, what's the story all about
I got a funny feeling we missed a page or two somehow
Ohh-ohhhh, Cinderella, maybe you could help us out
Does the shoe fit you now

(Suzy Bogguss "Hey Cinderella")

I am willing to concede that more than likely, the real reason I began thinking about this song again recently is that I have been feeling very un-Cinderella-like lately. As I watched coverage of the beautiful royal wedding, and as I have watched the Disney movies with Henry, I have found myself scoffing and doing more eye rolling than I have since I was thirteen. It's not the notion of true love. I have never been more sure of true love in my life, and the fact that I have definitely found it. I tell Jason everyday that if he wanted to leave, no one, including me, would blame him. He puts up with so much, and he does it with a positive attitude and unwavering faith. No, it's the idea of the fairy-tale life, the happily ever after, that bothers me.

My life now is about as far from a fairy tale as you can get. It could almost be a spoof of a fairy tale. I sometimes feel like I wake up and hear a voice laughingly saying "Maggie, this is your life. The anti-fairy-tale. Enjoy." Other times, I think of Jack Nicholson's famous line, "What if this is as good as it gets?"

Take the following pictures for example. When I was pregnant with Camille, this is not exactly what I pictured her room, or the rest of our house, to look like. We have begun adding more and more equipment as Camille has developed more and more issues.

Suction Machine

Pulse ox, decompressors, medications

Feeding pump and IV pole

Oxygen Compressor

Stander

And as I type this, I am sitting in a hospital room with Camille, listening to monitors beep and nurses chat with one another out in the hall. This is our second hospitalization this week. Last week at this time, we sat in yet another hospital room in yet another hospital, listening to our daughter struggle to breathe.

Camille has recently begun to have more difficulties that her doctors are still trying to sort out. She had to be put on supplemental oxygen at night because her oxygen levels were dropping too low during sleep. Then, her oxygen levels started dropping even when she was awake. Her heart rate, which has famously dropped very low since she was a few months old, is now dropping lower than ever. A recent echo of her heart showed that her heart muscle appears to be weakening, but no one is sure why, or is willing to concede that this is the cause of her recent issues. Camille has also had GI problems again, after several good months where things had seemed to have settled down GI-wise. She has begun to have increased retching and increased drainage from her g-button site. She has also been choking on her own secretions, and now has to be suctioned frequently. In addition, she has had some unexplained swelling in her abdomen and other parts of her body.

For the time being, we are stuck in what I like to call the "hospital black hole". You come in, and you never know when you are going to get back out. It always seems like we will be here forever. I am struggling to fight the Negative Nancy and Debbie Downer parts of me who want to scream and cry and crawl into a hole and never come out.

That shoe that fit when I was 21 definitely does not fit me now. In fact, it will never fit again.

And if I allow myself to take a deep breath, I realize, that's okay. It is. Deep down, I don't want a fairy tale life because then it wouldn't be mine. A fairy tale life does not include a child with many health needs. It does not include hospital stays and suction machines and oxygen compressors. And while I would give anything for Camille to be healthy, she isn't. She is who she is, but she is mine. She is a part of my imperfect life, a life I am choosing everyday to see as blessed no matter what crazy or difficult thing might be happening.

And I am hoping, and praying desperately, that as I make this conscious choice to see my life in this manner, I will one day wake up to this instead.

"Maggie, this is your life. And isn't it just so good. In fact, it's pretty much as good as it gets."

Ketchup Day

2011-03-04T23:28:00.000-08:00

When I was in elementary school, Fridays would often be called "catch up days". "Catch up days" were the days in which we were not given any new lessons, but instead got to "catch up" on any work on which we were behind. In my 8 year old mind, I always imagined a huge bottle of ketchup when I thought about Fridays. I was hearing "ketchup day" instead of "catch up day" even though I knew that "ketchup days" were for catching up. I thought of this a few months ago when my sweet Henry told me that he "loved me to pizzas". I have been telling him since he was born that I "love him to pieces", and I guess his sweet mind was imagining me loving him to pizzas. In any case, I definitely know it is time for a "ketchup day". Actually, it is way past time, but I won't go there.

I must admit that this attempt at a "ketchup day" is slightly overwhelming. So much has happened, but I'll try not to bore you with too many details. Camille is now seeing 9 specialists at Cooks: neurology, endocrinology, gastroenterology, opthamology, cardiology, surgery, pain management, pulmonology, and palliative care. She's added pain management, pulmonology and palliative care in the past few months. This does not include the genetics teams we see, or her pediatrician. It's quite insane, but it's kind of become normal to us. The other day, as I was coordinating all of her appointments, I had the thought that people might look at this insanity and think that I had Munchausen by Proxy Syndrome (the disorder in which caregivers exaggerate or fabricate illnesses for their child in order to gain attention or sympathy). I shared this thought with our pediatrician, who promptly waved me off and said, "Oh no. No one thinks that. I mean, if you had a normal looking child someone might think that, but..." He trailed off there. Yes, I know. Open mouth, insert foot. Since I have eaten my foot on so many occasions in the past, I let it slide. At least his comment took care of my worry about others thinking I have MBPS!

The big things that have happened in the past few months are as follows. In January, Camille had surgery to have a fundo placement (the stomach is wrapped around the esophagus to prevent vomiting). The surgery has been successful in preventing vomiting, which is good because her excessive vomiting had become extremely difficult. She also had a muscle biopsy done during the same hospital stay. The muscle biopsy was to check for mitochondrial disorders, which is the last thing that the various genetics teams can think of to test for right now. Camille has many symptoms of mitochondrial problems: failure to thrive, feeding problems, vomiting, developmental delay, white matter atrophy, etc. However, the Whitt Luck struck again, and the muscle biopsy was deemed useless. The sample got stuck in Indianapolis while on its way to New York to be tested. Therefore, it had thawed by the time it actually reached the lab in New York, and could not be used. We are now debating if we want to do another one or not. It's that constant tension we have about if it is worth putting Camille through yet another procedure just so we can possibly have an answer to her condition. It's such a tough call.

Also during this same January hospital stay, Camille had another MRI of her brain. It showed that there had been very little change since the last MRI 5 months before, which would be good news if her disease had not progressed much in the past few months. However, our neurologist believes that the reason we did not see much progression is because there was little progression left to be seen. He showed us her brain scans, which was really hard on us because we could then see what he was talking about. Camille now has very little white matter left in her brain. There was so much white matter atrophy from her first MRI (which was normal) to her second MRI that there is just now very little white matter left at all. We sat down and had a long talk with our neurologist about what all this means, particularly what it means for Camille's future. He said that he believes she has a white matter disease, but he is unsure which one. About 50% of white matter diseases do not have names at this time. He said that what he does know is that she has a genetic, progressive disease that is affecting her white matter. He is unsure what that means for her future, but he does not believe that she will make much developmental progress from here, and her life expectancy will likely be greatly shortened. This was obviously extremely hard to hear, even though we have pretty much heard it before. I think that our neurologist actually coming out and saying these things, coupled with actually seeing with our own eyes the progression of her disease on her brain scans, was very hard for us. We are really trying hard not to focus too much on any of that since no one really knows what will happen. We continue just to focus on Camille.

In focusing on Camille, we've come to the conclusion that our biggest desire for her is that she have as happy a life as possible. We want her to be comfortable, and we want her to be pain-free. Because Camille was still having increased irritability, and still seeming so uncomfortable nearly all of the time, our neurologist referred us to a pain management doctor at Cooks. She is absolutely wonderful, and has since been working with us on making sure Camille is more comfortable. Apparently, children with neurological conditions such as Camille's, often feel things differently due to their hyperactive nervous systems. In this way, Camille could be feeling intense pain for something that a typically-functioning child might not feel pain for. Camille is now on a high-powered pain medication, and it does seem to be helping. We feel such an immense amount of relief knowing that she is more comfortable. There is nothing worse than feeling like your child is living a life of such suffering.

Camille's neurologist and pain management doctors then recommended that we go ahead and begin palliative care for Camille. Palliative care is care for those with life-threatening conditions. We met with the team in February, and absolutely loved them as well. They were unbelievably kind and compassionate, and were dedicated to helping us give Camille the best care possible. We had to talk about many hard things at this appointment, such as hospice care in the future, but we are grateful that team will be there to help walk us through these difficult situations as they arise.

In recent weeks, Camille has battled a staph infection on her fundo incision site and pneumonia, but she has pulled through like a trooper, and has been feeling pretty good the past few days. We continue just to "keep on keeping on". (This is my go-to response when someone asks how we are doing. It may be a cliche, but it is the perfect way to describe our lives right now). And yes, some days it is harder than others to "keep on keeping on". Some days the multiple weekly doctors appointments, the multiple weekly therapy sessions, the 6 times per day medication administering, the g-tube feeds, the suctioning, the breathing treatments, the waking up in the night to your baby choking and struggling to breathe--sometimes that is all too much. But I am constantly reminding myself that Camille is worth all of this and more.

I'll leave you with a funny story. I was in HEB the other day, and was getting the usual stares from people. Then a woman who had been staring at us walked up and said, "Does she have what my son has?" I was very taken aback by this odd question, and immediately thought to myself, "I seriously doubt it, lady, considering that she apparently has what no one else in the world has!" Out loud I said, "Um..." The woman then went on to say "You know, the lazy eye! My son has one too!" At this point, I was laughing hysterically in my head and thinking, "Ha! That's actually one thing she doesn't have!" Out loud I said, "No she doesn't have one of those! Have a great day!"

Oh boy! The things people say! Sometimes it drives me crazy, but once again, Camille is worth it. No matter how many stares we get, or how many people give us the "I-feel-so-very-sorry-for-you" look, we don't mind. Again, Camille is worth it!

After all, we sure do love her to pizzas.

Well...

2010-09-10T19:30:00.000-07:00

This poor neglected blog. It's pitiful, really. I am ashamed at how much time I have let pass since my last post. I know that I sort of left everyone hanging, which I didn't mean to do, but life continues to be a whirlwind for us without much time to compose a coherent blog post. That's why I have decided to create a Facebook Group for Camille. It will allow me to post short and quick updates about Camille to keep everyone updated. I will still update the blog when I can, though, and will post on the Facebook group when I do. If you want to join the Facebook group, search for "Praying for Camille Lynne" on Facebook and then click "Request to Join".

The biggest news we have had as of late is that all of the genetic tests they ran on Camille after her latest MRI came back normal. No really, I know this has shocked you to your core that Camille has had more normal test results, and that they still cannot find out what her underlying condition is. We met with the Cooks Genetics team again, and they continue to be stumped. Even with the latest information, which include the new MRI, and the fact that Camille has Anterior Polar Cataracts in each eye (long story that I will for sure tell one time), they still could not pinpoint which syndrome she has. After the latest round of tests--the Lysosomal Storage Disease Panel, the long chain fatty acid test, and the Congenital Rett Syndrome test--they are now down to one last thing to test for. It's a syndrome that we discovered in our own research early on, and have asked about from early on, but it is one that is more difficult to diagnose clinically, and more difficult to test for since only one lab in the country does the test. Camille has a lot of the characteristics of this syndrome, and I have thought from the very beginning that she resembled some of the kids who have it and whose pictures we have seen. However, even now that both the Cooks Genetics team and the TCH geneticist we saw in January (we consulted him after these latest findings) believe that we should test for this syndrome, and that it is the last thing that they can think of to test for right now, we have run into yet another roadblock. Supposedly private insurance does not like to pay for this test. So we are praying about possibly shelling out the money ourselves to go ahead and get it done, or waiting to see if we can find a way around that.

The other latest news is that Camille has been vomiting so much recently that she is going to have to have another scope of her stomach to try and find the source. Also, this may be too many gory details, but she has also been vomiting up old blood, which indicates that there may be some damage to her stomach lining. She will have the scope in 2 weeks up at Cooks (another long story, but we have switched back to seeing a GI doc up there). She will have to be put under general anesthesia for the procedure, which is always concerning, but she should not have to stay overnight. Please begin praying that this scope will show the cause of Camille's vomiting, and give us direction in what we should do. It is unbelievably difficult on our entire family for Camille to vomit like this. Not only is it horribly uncomfortable for her, it means that she loses calories that she so desperately needs. It also means things that may seem superficial to you, but when your child is vomiting 3-4 or sometimes more times per day, then these seemingly insignificant things become important. Things like tons of clean-up, uncontrollable amounts of laundry, and a 3-year-old little boy who has learned to make the most awful-sounding puking noises. He also uses his play cell phone to "call" our doctor, and will say something like this: "Doctor, yeah, uh, my baby sister is throwing up again. Yeah, she's puking." And did I mention that Henry wants to be a doctor for Halloween? Yes, and he wants Camille to be his patient. Hmmm, you know your little girl is throwing up too much when...

I'll update on FB and on here when I can, which is hopefully a lot more than recently! Your support is what helps us continue on, even amongst the puking and the testing and the procedures. Thank you.

Difficult Times

2010-08-02T18:10:00.000-07:00

I can't tell you the number of times I tried to write this post and the words just weren't there. I still don't know if the right words will come even now, but I feel like I can't put this off any longer.

About 2 weeks ago, we received some difficult news. Camille's 24-hour EEG came back normal (meaning no seizures), but her MRI was abnormal. The neurologist called to tell us that her new MRI showed that things in Camille's brain were changing, or progressing. Her brain showed signs of cerebral atrophy (it is getting smaller instead of bigger) and dysmyelination (the myelin, or coating of the nerves, in her brain is not forming and functioning properly). He said that this indicates several things to him: one, it appears that she does have something progressive, which will get worse over time; two, the atrophy and dysmyelination are usually indicative of a leukodystrophy.

Leukodystrophies are just plain awful disorders. They are neurodegenerative, and associated with extremely short life expectancies. Our sweet Camille continues to be unique--the neurologist said that he did not recognize the pattern of her dysmyelination, which means he could not pinpoint which specific disorder she might have. Therefore, he and genetics consulted, and decided to do a Lysosomal Storage Panel, which is essentially one test that looks at many different disorders at one time. We had the blood drawn for the panel last week, and should hear something by the end of this month.

I feel such a strange combination of emotions right now. In one sense, I am relieved to know something and to be very close to finally knowing what is going on with our little girl. Then I battle the guilt that comes along with that sense of relief. Why should anything about this news be a relief? It's horrible and terrible and heartbreaking. I once said that not knowing was worse than anything, but is it worse than this? Wouldn't it be better to not know this?

I feel such a profound sadness that I can't even begin to describe. It makes my chest hurt, and it makes me feel like there are permanent tears stuck in my eyes, ready to overflow at any moment. It makes me question my whole belief system, however cliche that might be. It makes me wonder how I am going to watch my child battle a progressive disease, how I am going to watch her deteriorate, and still keep my faith and sanity.

We ultimately do not know anything definitive at this point, and I am holding onto that. And what we do know remains true. We know we love Camille. And we know we love a God of goodness and mercy. Whatever we find out, whatever happens from this point on, this will not change.

Thank you for your continued prayers and support.

The Highlights

2010-07-07T13:26:00.001-07:00

And once again, too much time has gone between posts. Even after my Memorial Day resolution and all. So sorry. We have been busy, however, and I figured I would write a post of mainly updates--the highlights, I guess you could say.

First, we are (yet again) in the hospital here in Waco. Camille started vomiting last week, and it just kept getting worse. She was dehydrated yesterday, so our pediatrician admitted her. And before you ask, no, we have no idea what brought all of this on. As usual, many tests have been run, and nothing stands out as the cause yet. Her blood work was little off, and her cortisol was low, but nothing too major. We are hoping she can go home late tonight or tomorrow. I'm afraid that I might have to do my beg/threaten/almost-get-myself-arrested-for-all-the-harassment routine again--you know, the one I whip out every time Camille is in the hospital and I feel like I am going to die if we have to stay one more minute?

And you know what the real kicker is? We get to do this all again next week. Yes, next Wednesday, we are scheduled to be admitted to Cooks for a 24-hour EEG and a new MRI. We're just a bunch of hospital hoppers, that's what we are. We like to switch things up at our house. Hillcrest in Waco one week, Cooks in Fort Worth the next. Why not, right? Oh, and it's gonna be fun times next week for sure. Did I mention that they are going to video Camille the whole time she is admitted so that they can try to match up her abnormal movement pattern and her brain activity? Did you catch that? Everything that Camille or I do or say for 24 hours is going to be recorded. I feel sorry for whoever has to watch that video. Talk about some bad reality TV. Camille and her mama do not like being cooped up in the hospital. Pray for us, please.

In other news, Camille has also had several apnea episodes in the past few weeks. I had mentioned before that she was now on an apnea monitor, but that she hadn't had any episodes. Well, I spoke too soon, as usual, and she has now had several. I realized after I posted this a while back that some of you might be wondering what the big deal about apnea is. A lot of people get apnea, right? Yes, apnea is common in newborns born prematurely and adults. But it is not common in a child Camille's age. Even more than that, they believe she is having Central Apnea, which is even less common and not easily treatable. Central Apnea means that there is a neurological cause--i.e. something in Camille's brain is not firing correctly and failing to remind her to breathe. To be considered an apnea episode, she has to not breathe for at least 20 consecutive seconds, which completely freaks me out when I think about her doing that in her sleep. Her heart rate is also continuing to drop repeatedly, but this is not new. It is, however, dropping lower than it was before, which was the main concern that her cardiologist had the last time we saw him. We will see him again in a couple of weeks, but I'm really not hopeful about any more answers in that department. I am still hoping that this is just a little quirk--abnormal for everyone else, but normal for Camille.

Speaking of "normal", despite all of these new developments, we have been enjoying our rather "normal" summer. Henry and Camille have enjoyed being outside, going to the splash parks, meeting friends at the museum, etc. I want so desperately for our kids to have as "normal" of a life as possible, in between all of the tube feedings and therapy sessions and doctors appointments and hospitalizations. And most of the time, I feel like our lives are completely "normal".

Then something will happen like Henry dragging out our air pump and pretending to hook it up to Camille to "feed" her. After all, one pump is the same as another, right? It's so crazy how "normal" tube feeding has become to all of us when I'm sure it is still so foreign to everyone else.

Or my most recent favorite--the stares and questions we are starting to get. I will be out in public with Camille, thinking that we look just like a regular mama and baby, but apparently we don't. I guess that as Camille gets older, it is becoming more apparent that she is not the "same" as other kids her age. For example, take this recent conversation we had at the splash park.

Woman (approaches me out of the blue and asks): How old is your baby?
Me: She just turned a year old.
Woman (confused): Oh. Is she (long pause while searching for the correct word to use) okay?
Me: (Totally wanting to just say "Why yes! Whatever do you mean?") Well, she has some special needs. No one is really sure what she has, though.

The conversation went on, and it really didn't bother me, but it just made me realize that however "normal" I think we are, I guess we're not.

But that's okay with me too. Who needs normal anyway?

Lately

2010-06-13T07:55:00.000-07:00

Lately, our little girl turned the big ONE. It was so hard to believe--in some ways, it seems like she was just born, but in other ways, it seems like this has been the longest year of our lives. I told Camille on her birthday morning that she has seen more doctors and had more tests and treatments in her one year than most people do their whole lives. She smiled and grunted at me in response. We celebrated the actual big day, which was a Wednesday, by taking Camille down to the Scott and White NICU. When Camille was in the NICU, I would see families bringing their children back to visit, and I would think to myself that I would never do such a thing. If I ever got Camille out--and most days it felt like that would never happen--then we were hitting the road and never looking back. But as Camille's birthday approached, I began to want to go back to the NICU, not necessarily to see anyone in particular or do anything in particular, but just to give myself a reminder of how far Camille has come. So we went down, took some pictures (her neonatologist was unfortunately out on vacation and so we didn't get to see her), and had a nice lunch at a little restaurant in Temple. Later, we all went to the Waco Water Park, and Camille loved getting to splash (or rather, be splashed by her brother) in the water. Then, we finished up the birthday week with a very warm cookout in the park. We could have called it the Camille Lynne Sweat Fest instead. Who knew it would already be close to 100 degrees in Waco at the beginning of June? We were so grateful for all of the friends and family who came out and sweat, I mean celebrated, with us.

Lately, things have been a little more troublesome health-wise for Camille. Her jerky movements have increased significantly in the past month, which led us to have to take her to see her neurologist again sooner than we had planned. After seeing her and her movements now, he was finally able to put a name to them. She has what's called Myoclonus, which basically means uncontrollable jerky muscle movements. When he said this name, I latched on to it like a rabid dog. I started fumbling around for a pen, and asked him repeatedly to spell it so that I could make sure I had it written down correctly. He looked at me strangely, and said, "Well, Myoclonus only describes her abnormal movements, not her entire condition." (Our neurologist has been wonderful, by the way, about encouraging us to find an overall diagnosis for Camille, and has said that he thought we are right to seek out multiple opinions from geneticists until we find our answer). I told him that I was just so excited to have a name for something. I can finally tell people something other than, "And she has these weird movement things that no one can name." Plus, I can go enter something else into my database--this little tidbit, however, I kept to myself and did not share with the neurologist. The thing about Myoclonus, though, is that it is usually related to epilepsy. The neurologist said that it is related to seizures in almost every child he has ever seen with it, but in Camille's case, he doesn't think it is. He's not sure what is causing it to happen, and what is causing it to get worse, other than it is something occurring in her brain. So, he is going to treat it with a new medication, which he said would hopefully lessen it, not take it away completely. And then he is also going to do a new MRI and a 24 hour EEG, to see if they can see more of what is going on in Camille's brain now that she is bigger and older. The other new medical issue is that Camille has had a blue face and lips when I have gone to wake her up from a nap twice now in the past 2 weeks. Therefore, she is now also on an apnea monitor at night. So far, so good, and the monitor has not alarmed indicating any apnea at all. Not so good, however, that we don't know what those spells are from, if they are not due to apnea, and that we have yet another set of tubes and wires to hook up to our baby every night.

So lately, I have been doing too much pondering. Too much worrying. Too much looking ahead. Too much feeling sorry for myself. What are we going to do if all of this continues? Our neurologist, who is the most wonderful person in the world, said very kindly when talking about Camille's Myoclonus that it was something that would never be cured, but that we could hopefully lessen it with treatment. He said that the goal was to just make this a livable situation for us. Right now, it's truly not. Her irritability has increased with her myoclonic movements. And her movements have made it hard to do almost anything. If you can imagine having these constant, uncontrollable jerks happening all over your body, then you can imagine what Camille is feeling all day everyday right now. It's miserable. It affects sleeping, eating, any type of motor activity. We can sometimes barely hold Camille when it gets really bad.

And the fact that this has all gotten worse right around Camille's first birthday has been really hard. I try not to, but I keep thinking about all that Henry was doing around his first birthday, and my heart breaks. He was doing things at one year that I'm not sure she'll ever do in her life time. And the way she has been so miserable and unhappy these past few weeks makes me feel even worse. We had several really good months where she was so happy and hardly cried at all. These past few weeks have been reminiscent of her early days where she cried all day long. I just keep thinking that this is not the life I wanted for my child.

Lately, I am reminded of two things that comfort me. One is the best advice that I think anyone could give the parent of a sick or special needs child. These words came from my Aunt Jena the day after Camille was born. "Take it one day at a time." I simply can't look ahead, can't imagine what our lives will be like if what is happening now continues. It's too overwhelming. All I can do is get through this one day. That's doable. The second is 5 words I received in a text message from a friend shortly after Camille was born. "God will not leave you." That's all it said, those 5 words. And perhaps those are the greatest words of comfort there are.

So it's been a while...

2010-05-29T19:13:00.000-07:00

Has it really been two months since I last posted? I wish I had some grand explanation for why that is. I really don't. Things have actually been quite--dare I say?--normal for us these past two months. I think I got so caught up trying to keep us in our "normal" state that I put things like blogging aside. I guess you could say I was in full "prevent a crisis" mode. I kept thinking that since we hadn't had a true crisis in a while, we were due for one soon, and I was busy trying to keep that from happening.

That sounds like a good explanation, right?

Let's go with that one then.

And not the fact that I have been spending way too much time watching back episodes of Bones, and reading blogs about Bones, and Facebooking friends about Bones. Did you know that there is this whole online Bones community made up of thousands of Bones-crazed people? They have biggest fan awards and everything. And no, I have not joined this community. I'm more of a wannabe, a lurker, if you will.

Or there's also the fact that I kept realizing that it had been so long since I last blogged that I had way too much to say, so much in fact that I really didn't know how to say it in a comprehensible manner, and so many times I would sit down at the computer and type up a rambling post that I would promptly delete and, well, go back to checking out the latest behind-the-scenes photos for Bones.

See, the first explanation is best.

I am, however, prepared to make a Memorial Day resolution to you all that I will try my very best from now on to post at least twice a week about my adorable children.

I must confess, though, that I feel confident in making such a resolution only because Bones is now over for the summer. The fall might be a different story. Don't say I didn't warn you.

Onto what you really want to hear.

Camille has been doing really well. She has become much more social in recent months. I can usually make her laugh this great little grunting laugh by tickling her tummy or neck, or by saying "pop!" For some reason, she thinks the word "pop" is hilarious. She is still not sitting independently yet, but can sit for a few seconds unassisted. She can also get up on her hands and knees in the crawling position for a few seconds as well. We can tell that she wants to crawl so badly, most likely to chase around that crazy brother of hers, but she just isn't there yet. We feel like what is most preventing her most from being able to sit and crawl is her abnormal movement pattern (some call it ataxia, others dystonia). She has very jerky, puppet like movements, and this obviously causes great issues in balance and coordination. Jason and I have felt recently that these movements have gotten worse, and they will likely do another MRI of Camille's brain in July to see if something has changed that would be causing this. These movements also make it hard for Camille to sleep and eat.

Ah, sleeping and eating. The two biggies for our little girl. Camille is sleeping very well right now, and has been for the past two months. We are so thankful for this! She will usually sleep 11 to 12 hours at night, sometimes straight through without a peep, sometimes waking up but putting herself back to sleep after a few minutes of "talking". I always wonder what she is saying in those moments. We hear her on the monitor having some sort of animated conversation with someone, most likely her light-up seahorse who she adores, and then after a few minutes, she'll have put herself back to sleep.

As for eating, I'm really not too sure what to say about that at this point. About a month ago, we asked our GI if we could try just giving Camille her 12 hour night feed through her button, and then feed her only orally during the day to see if we could get her to eat more orally this way. Before, we had been doing the continuous night feed through the button plus several other button feedings during the day, with some oral feeding in between. Our hope was that Camille would be hungrier, and therefore eat more orally, if we just did oral feeding during the day. Well, let's just say that some days are better than others. Some days I can get her to eat an entire jar of baby food at one sitting, other days she will gag on the first bite and I can hardly get anything down. It's a work in progress, a work that I feel is so valuable. I want my little girl to eat. A post all on eating is coming your way. I've been composing it in my head for quite some time now. Get excited.

As for medical issues, the only really new thing is that Camille is taking her steroid for her CAH, and that has gone well.

Oh, and we saw a new geneticist.

Did that sound like an afterthought? I guess it kind of is. I decided shortly after Camille's hormone issues were settled that now that she was older and we had some of her symptoms figured out, that it might be an appropriate time to see a new geneticist. A fresh pair of eyes to evaluate her now that she was presenting us with more "clues" to her condition. I decided to make her an appointment to see a geneticist in Austin who is in the same group with her new GI. We have loved this group, and so I thought I would give it a shot. I had also heard from others that this geneticist was very "thorough." That sounds good, right?

After our appointment on Wednesday, I would say that I would agree with the "thorough" assessment. I also found that this geneticist, like our GI, was very "nice". But, nice no longer cuts it for me. I like for Camille's doctors to be "nice". I like them to be kind and compassionate and understanding. That's a real bonus for me. But I would give up all of those things in a heartbeat if I had a doctor with zero bed-side manner, but the drive and determination to figure out what is going on with my child. Bring on Dr. House. I can handle a little saltiness, as long as you throw in a lot of stubbornness and determination too.

This geneticist was not our Dr. House. She was nice, she was compassionate, she probably knew her stuff, but she had no idea what Camille had, and what's worse, she didn't seem to have any plans to figure it out. She took down all of Camille's history in a very "thorough" manner; stated how Camille had already seen several very good geneticists; and then, of course, gave us the whole spiel about how sometimes they never find out what a child has, and so we might want to consider accepting that as our reality.

I was okay on Wednesday, immediately following our appointment. It didn't hit me until Thursday morning how frustrated I was about it. I got so angry, probably more angry than I have been in a long time. I called a friend and literally shouted into the phone, "I'm so sick of these doctors! I'm sick of their 'I don't knows'! I am sick of them shrugging their shoulders at me, saying that they are very sorry but they have no idea what is going on with my daughter, and then expecting that to be okay! In what other stinking profession does someone get to say 'I don't know, and I don't have any plans to find out for you' and get away with it?"

Thank goodness for good friends who will listen to a good old fashioned rant.

But the more I thought about it, the more I realized that even though most of the doctors we have seen have not known what Camille has, and not seemed committed to figuring it out, what bothered me most about this particular geneticist is that she seemed surprised that I was still searching after receiving several "I don't know's". Is it that other parents get a "Wow, your child has something, but I sure don't know what it is!" and they're okay with that? They just take that and move on? Really? I can't imagine that anyone in my place would accept an "I don't know" and not continue to look for the answer.

Yes, I want to know what Camille has in order to know what her future will hold. Yes, I want to know what Camille has in order to be able to possibly seek out other families with children with the same diagnosis. Yes, I want to know what Camille has so that I can know if Henry runs the risk of passing this onto his children.

But most of all, I want to know what Camille has because I simply want to know who she is. Whatever she has is a big part of who she is. What better way to give your child, who has suffered so much, some sense of dignity than to figure out why she is the way that she is.

And so I guess I'll keep searching. I think it's only human to do so. And I think it's the greatest gift I can give my daughter, the gift of knowing who she is.

A Diagnosis

2010-03-30T19:43:00.001-07:00

Well, we have a diagnosis. Sort of. I am thinking of it as a partial diagnosis. As in part 1 of 2 or maybe 3. I should explain.

You see, it is now believed that Camille has at least two genetic conditions. The syndrome, or condition, that is causing what I consider to be the majority of her issues, is still unknown or undiagnosed.

However, we now know what is causing her endocrine/hormone problems. She has been diagnosed with a rare form of non-classical Congenital Adrenal Hyperplasia (CAH), the 3-beta form. This form of CAH is so rare, that of the people who have CAH, only 1% of them have this form. It is inherited genetically in an autosomal recessive pattern, meaning Jason and I are more than likely each carriers for it.

Or maybe not.

I should explain again.

Here is where it gets tricky. You see, this is a very rare condition. And then, whatever else Camille has that accounts for all of her other issues (small for gestational age, small head, failure to thrive, eating difficulties, developmental delay) is also rare, so rare in fact that it cannot even be determined at this time. What are the chances of her inheriting two very rare conditions from me and Jason? In other words, what are the chances of Jason and I both being carriers of two of the same rare conditions and then meeting up and getting married and having children?

Basically slim to none.

And so, what the geneticist in Houston proposed might have happened was this. We all inherit two copies of each of the 23 chromosomes in our body, one copy from each parent. Each chromosome is made up of thousands of genes. Each of us are carriers for at least 6, probably more like 10 or more, genetic syndromes (mutations on those genes). Most of the time, parents are not carriers for the same syndromes, since there are thousands. Even if they are, then there is still only a 25% chance at each pregnancy that the baby would inherit the syndrome, depending on if the baby inherited a mutated copy of the gene from each parent.

However, the geneticists believe that what may have happened with Camille is that she inherited two copies of one of the chromosomes from the same parent, either me or Jason, instead of inheriting one copy from each parent. Therefore, if she inherited two chromosomes from me or two chromosomes from Jason, basically a duplicated chromosome, then she would have a 100% chance of getting whatever that parent was a carrier for along that chromosome because both chromosomes would definitely have the mutated genes.

Have I lost you yet?

So, the good news about having a diagnosis of 3-beta CAH is that we might be able to use it to determine what the other syndrome is. If they now know that Camille has CAH, and what chromosome that form of CAH is located on, then they can look at what other syndromes are also on that chromosome, and see if any of them match Camille's other "symptoms".

The bad news? This form of CAH, as with most forms of CAH, can be life-threatening if not treated properly. Let me explain a little about what CAH is. You can also google it, but you won't find much about the 3-beta form, and you know that's coming from the Google Queen.

In a nutshell, what happens in all forms of CAH is that the adrenal glands (located above the kidneys) do not produce enough cortisol. "Cortisol is a steroid produced by the adrenal glands that our bodies need to: (1) deal with physical and emotional stress, and (2) maintain adequate energy supply and blood sugar levels" (caresfoundation.org). Deficiency in cortisol also leads to overproduction of other hormones, which we saw with Camille in the form of DHEA overproduction. This overproduction of hormones leads to the overt symptoms of CAH, like the signs of early puberty that we saw with Camille. Babies with CAH can also have ambiguous genitalia from the overproduction of these hormones, which thankfully Camille does not have.

The main issue now is that because Camille's adrenal glands do not produce enough cortisol, she could suffer from adrenal crisis, especially when her body is stressed (i.e. in times of illness). Therefore, we are going to have to start treating her with a steroid. She will take a regular maintenance dose twice a day, and then when she is sick, she will take a stress dose, which is basically an increased dose. If she were ever to get really sick, in particular, vomiting so much that she couldn't keep her medicine down, then we would have to inject her with a dose. Jason and I are supposed to go up to Cooks next week to be taught how to inject Camille should this ever happen.

Could it get any more fun than that?

And so, for the million dollar question, how are we taking all of this? For some reason, I am taking it very hard. First, it's just scary to me to hear the words "life-threatening". And, it's also scary that we are the ones who decide when to do the stress dose, or when to do the injected dose. What if we screw up and do it when it is unnecessary, or worse, what if we screw up and don't do it when we should have and she goes into adrenal crisis? Talk about pressure!

And here's the other thing that's driving me crazy. This diagnosis doesn't even account for all of the other huge stuff Camille has going on! It's not even what anyone would consider her "main" diagnosis! And so we have this new condition, which can be life-threatening, which requires more medication and more regular appointments and blood draws every few weeks---and it doesn't even explain the half of it! Or even a fourth of it!

I am really trying hard to keep things in perspective here. One, I'm thankful that this is treatable. Two, I'm so relieved that she doesn't have an adrenal or ovarian tumor, the other option of what could have been causing the hormone issues. Three, I am glad that we at least know something about what is going on in Camille's little body.

But that doesn't stop that little niggle of irritation from occurring, where I think over and over in my head, "REALLY? REALLY?" My baby girl has at least two genetic conditions that are causing her all of these problems, when most babies have none? And all of this occurred because of something that was out of our control, a random mutation that happened before I even knew I was pregnant, a "fluke" or "round of bad luck"? Those thoughts just make me want to scream and pull all my hair out, or at least have several really loaded margaritas.

But as I have tried to do from the very beginning, and believe me, I still fail miserably at it every day, I am still trying to see the goodness in this. There is certainly no goodness in any of these "diagnoses", but there is goodness in Camille. I can't believe my little girl is only 2 months away from her 1st birthday. She has become a really easy baby (everyone stop reading this now and knock on some wood nearby). She is happy nearly all of the time now, smiling, laughing, squealing, talking. She is a true joy. And we just love her to pieces.

She could have 20 genetic conditions, and it wouldn't change that.

Luck of the Irish?

2010-03-17T17:29:00.000-07:00

Not sure if it is the luck of the Irish, but we are so happy to report that Camille has slept through the night with only one middle-of-the-night-wake-up for over 2 weeks now! If you have seen us recently, you may have noticed that we are a lot happier and looking a tad less like dead people walking. Let's be honest here--we still have Mr. Action and Miss High-Maintenance keeping us very busy during the day, so we still don't look great. But looking a little less like death-warmed-over is good enough for us. It's amazing what sleep can do!

And so what really caused this new change in luck? I'm going with Camille's new formula. Her new gastro had us switch her formula from Elecare to a regular ol' Similac. Wow, regular formula! That you can buy in a regular store! And not sell body parts in order to pay for it! And it apparently helps your baby sleep through the night! Greatness! Apparently, the gastro thought that the Elecare could have been "dumping" out of Camille's stomach too fast, causing pain and discomfort. He was hoping this change would help with irritability and sleep. So, we switched Camille to Similac, and the night that the transition was complete was the first night that she slept all night. Ten whole hours instead of her regular two. Again, greatness! I told our Gastro as much on Friday when we saw him again to follow-up on this new change. I gushed about how appreciative we were. I really wanted to tell him that he was a genius and then kiss his feet, but I held myself back. Again, it's that great restraint I have coming into play.

So maybe it was the formula, maybe it was the start of Spring, maybe it was that Camille has not been sick for over 2 weeks, or maybe it was that so many of you have been praying for this specific thing for us. We know that is the most likely reason!

Even so, it wouldn't hurt to have a little bit of Irish luck. The Whitts will take all of the good luck that comes our way! And so, in typical Henry and Camille fashion...

Happy

Saint

Patrick's

Day!

Yes

2010-03-07T20:07:00.001-08:00

In case you haven't already heard...

Yes, we are home from the hospital as of last Thursday a week ago, and yes, Camille is over her pneumonia and feeling better than she has in a long time. And yes, I did have to beg and harass our pediatrician to let us go home when we did, but oh yes, it was worth it.

And yes, Jason did get the flu shortly after we got home from the hospital, and yes, we do sometimes think we are cursed. And yes, Jason is now over the flu, and yes, we are hoping that sickness has fled the Whitt house for a long, long while.

And yes, Jason and I did attend the Baylor vs. Texas men's basketball game on Saturday, and yes, the victory was so very sweet just as it always is against the Longhorns. And yes, I did embarrass Jason thoroughly, and yes, although he did not have to pull me down by my clothing this time, he did have to remind me that there were children sitting nearby. And yes, one of those children did walk by at half-time and stick his 'horns sign in my face, and yes, I did refrain from sticking my tongue out at him in response.

And yes, Henry and Camille did stay with Nani and Papi during the game, and yes, they did have a blast. And yes, because Camille did not attend the game, it does mean that she will have to find another opportunity to wear her new Baylor cheerleader outfit, and yes, when she does in fact wear it, I will post pictures. I promise.

And yes, Camille did see another endocrinologist on Friday, and yes, he was a huge improvement over the last one. And yes, he too was thoroughly baffled by Camille, and yes, he too had no idea what could be causing all of her hormone issues. And yes, he did run more tests, and yes, those tests will take 2-3 weeks to get back. And yes, that is very annoying.

And yes, not surprisingly, all of Camille's latest GI tests did come back normal (read: unhelpful), and yes, that is also very annoying.

And yes, last but not least, I am feeling much better than I was when I wrote my last post, and yes, that probably has a lot to do with the fact that you all continue to lift us up with your amazing support. And yes, although I have said this a thousand times before, thank you.

Not Just the Facts

2010-02-24T18:13:00.000-08:00

So much to tell you. So much has happened. So many thoughts and feelings swirling around in my head.

I'll start with the facts...

The Facts:

So as most of you know, either through Facebook or my mother ;), Camille was admitted to the hospital on Monday with pneumonia. This latest round of sickness all started last Wednesday evening when Camille started to run a very high fever. By Thursday morning, her fever was up to 104, so of course, I took her into her pediatrician. He did a flu test and a strep test, both of which were negative. Then he took a chest x-ray. The x-ray showed some pneumonia in the bottom of one of Camille's lungs, and so he gave her shot of antibiotics, and sent us home on yet another antibiotic and breathing treatments. Her fever was down by the next day, and we were doing breathing treatments round the clock, so we thought she was getting better. Later that weekend, she started having trouble breathing. She was gasping and gagging, and her breathing was just incredibly labored. We took her into an Urgent Care center, and to the ER, but her oxygen saturations were still in the bottom of the normal range, and so we thought she would be fine in a few days. By Monday, though, we took her into our pediatrician's office because in a matter of hours, her breathing had gotten significantly worse. I heard our pediatrician outside the exam room saying, "Oh Camille, Camille. I should have known you would be back to see me," in his usual fun, joking tone. Then he walked in the door, took one look at Camille, and said that he had to admit her to the hospital. Then he opened back up the door, and shouted at a nurse to bring him a nebulizer NOW. It was a little disconcerting. Okay, it was a lot disconcerting.

So, we're here. At yet another hospital. Hooked up to more monitors. Answering more medical history questions. Running more tests. Telling Camille's story to more medical people. The pneumonia is now in both lungs. Camille has been needing to be on oxygen because her oxygen saturations are too low without it. She is receiving breathing treatments every 3 hours, and "patting" treatments every 6 hours. What in the heck are "patting" treatments, you ask? Well, those are Camille's personal favorites. That is where a Respiratory Therapist beats (I mean, pats) my sweet little girl firmly on the back to break up the mucous in her chest. It's fun (read: torture) for both baby and Mommy.

In the midst of all this craziness, Camille has also had a new battery of GI tests run because we saw a new GI doctor last week. We had just felt like something was being missed GI-wise, and so we wanted to get a second opinion. Our pediatrician referred us to a GI doc in Round Rock, and we really liked him. He was very understanding and thorough, and we really felt like he was committed to trying to find out why Camille has been having so many GI problems. My favorite part about him? He asked to hold Camille. He wanted to hold her and carry her around and show her off to all of the nurses. He sure knew the way to this Mom's heart. No other doctor that we have seen has asked to hold Camille. So anyway, he ordered a ton of tests (upper GI, lower GI and ultrasounds), and we are getting them done while we are in the hospital.

And now for the good stuff...

The Commentary:

1. The medical personnel here at this hospital have been very nice and for the most part, very helpful. But they have seriously acted completely dismayed by Camille. They have acted like they have never seen a G-button before or heard of a child with a genetic syndrome. I think one radiologist used the word "fascinating". Okay, so that's not necessarily a bad word to use---when it's used to describe a rare kind of plant or animal! But not my baby!

2. Respiratory Therapists are a really nosy bunch. Seriously people. Just come in and do your breathing treatments and your "patting". You don't have to know every little thing about my child to do that. I have felt like I was being interrogated on a witness stand during almost every RT visit. Maybe they just feel the need make small talk during the breathing treatments. The quiet hum of the nebulizer works for me, but maybe it's just gotten too old for them. Or maybe all of those steroid fumes are starting to go to their heads. Can I claim that for why I've been so loopy lately?

3. Or maybe my loopiness is from total sleep deprivation. I now see why that's used as a torture technique. It is pure torture. And it's starting to take its toll. I recently rubbed toothpaste all over my hands, thinking it was hand lotion. I have accidentally gotten out and left my car running in two different parking lots on two different occasions in the past week. I forgot to send Henry to school the other day with a coat, and he had to wear one from "lost and found" when his class went out on the playground. Ouch. And just today I dumped a full bottle of formula all over the floor because I tried to pour it into a closed feeding bag, AND I walked out of a radiation room after one of Camille's tests still wearing my heavy shielding apron so that the tech had to chase me down to retrieve it. There's no telling how long I would have worn that thing without realizing it!

4. So a nurse aide walked into Camille's room today and said that she came to bathe Camille. She filled a tub with water and soap, and then said to me, "Okay, here, Mom. Do you want to bathe her?" I looked at her and seriously said, "No, not necessarily." The old me--the me that actually got sleep and wasn't so unbelievably beat down--would have worried and worried that saying that made me look like a horrible mom. But the new me--the totally tired, weary-of-it all, almost-completely-beat-down me--just thought to myself, "Heck no, lady, not if you're capable and willing. I am so freaking tired. You are more than welcome to bathe her while I sit down for the only five minutes that I'll get to all day!" And I did just that. And only felt slightly guilty about it.

5. I was actually mistaken for a doctor today. No, it's not because I was looking so professional and doctor-ish in my Baylor t-shirt, sweat pants, limp hair and dark-circled eyes. It was because of my vast medical knowledge. Yup, that's really it. A radiologist was asking me about some of Camille's history today, and as I was answering his questions, I realized he was looking at me funny. He then asked me, "Are you a doctor?" Uh, no. "Are you in the medical profession then?" Uh, no again. "Oh, it just sounds like you know all of this medical stuff really well." I guess that's what happens when you have spent the last nine months either in the hospital, or the doctor's office, or scouring medical sites on the Internet. I should have answered that I actually do have my M.D. in Genetics from the World Wide Web, but I wasn't quick enough to come up with that clever of a reply. Must be that whole sleep deprivation thing again.

6. I miss my little boy. Henry continues to be a real trooper through all of this. He is currently staying with his Nani and Papi in Fort Worth, which he thinks is way better than being at Mommy and Daddy's house anyway. But I can barely stand it. I miss his little voice chattering away a mile a minute. I miss the way he is so snuggly after his naps. I miss his constant singing and question-asking. And okay, I even miss all of his little shenanigans. The latest adorable thing he is doing? He will start counting, and forget a number, but instead of just skipping it, he will replace it with the word "number". For instance, he'll say, "One, two, three, four, five, number, number, eight, nine, ten." Love it!

7. The people who designed this hospital, and for that matter, Scott and White hospital, did not have a special needs baby. How do I know this, you ask? Well, simply because in both hospitals, you have to walk through the labor and delivery waiting area in order to get to the NICU and pediatric wings. What's the big deal about that, you ask? Well, if you have a special needs baby, or a chronically sick baby, it is so darn hard to have to walk through the area where everyone is anxiously awaiting their perfect little bundles of joy in order to see your baby who is struggling. I almost want to throw up every time I have to do that. Maybe I'm just bitter. Okay, probably I am. But I don't think there is anything more difficult than seeing all of these other people having healthy babies when yours is not.

8. And I guess that brings me to say that I am honestly struggling right now. This latest hospital stay has been more difficult than anything else so far, and I'm not really sure why. I think it might be because I keep having this feeling that this is just a preview of our future, a small glimpse of what our lives are going to be like from now on, and I just don't know if I can do it. This is the first time since Camille was just born that I have seriously thought over and over again, "I can't do this. I can't do this. I can't do this." I just don't know if I can do repeated hospital stays and constant medical issues. And I don't know how much longer we can keep up this crazy pace, and still keep our sanity. I am tired; I am stressed; I am weary; I am sad. This just was not what I imagined my life to be like, and it seems to just keep getting worse. And so, I have been praying. One simple prayer. "God, have mercy." That's it. I started praying it at about 4:00 a.m. our first night in the hospital when Camille was awake and screaming inconsolably. I repeated it over and over in my head. And I guess I will just keep praying that, and hoping that I can begin to feel God's mercy in new ways, even in the midst of all of this.

Valentine

2010-02-14T18:35:00.001-08:00

Camille has something she would like to ask you...

" Will

You

Be

My Valentine?"

Oh wait! Never mind! She forgot! She already has a Valentine...

And he's as sweet as this cupcake he's eating.

Yep, super sweet Valentines for sure!

Whoo-hoo!

2010-02-09T20:26:00.000-08:00

We, two very adorable children, one with a scratch on the nose, the other with a big silly bow, have two very exciting things to tell you.

Did we mention they are two very exciting things? Ready???

No, don't worry. One of them is not that our Mama is pregnant again.

Okay, here goes! The first is that Camille did not have to be admitted to the hospital. Her infection is clearing up!

The second is that Camille ate 5 ounces of formula BY MOUTH FROM A BOTTLE TODAY! Can you tell how proud she is?!

See, told ya! Very exciting! Can we get a Whoo-hoo?! (Or Sic 'Em Bears. That kinda works for this photo too!).

Sick...again...

2010-02-05T20:13:00.000-08:00

We are a house full of sickies once again. Or is is sickos? Sickos sounds too much like psychos, so I'll stick with sickies. Psycho hits just a little too close to home as a descriptor for me right now.

Anyway... Jason, Henry and Camille are all sick, each with their own issues. Henry had pink eye followed by a cough/congestion which has lasted for over a week now. Jason may or may not have the flu. And Camille. Sweet little Ms. I-catch-everything Camille. We are not sure what she has.

Her latest round of the sickies started right after we got home from the Houston genetics visit. She had fever and some congestion, and our pediatrician thought she might have seasonal flu. She took Tamiflu for 5 days, and that seemed to clear that up. Then, she started screaming and flailing (more than usual) when we were feeding her. We were concerned that her g-button might be infected, and it turns out it was.

Our pediatrician originally thought that she had a staph infection in her button, and so he gave her an antibiotic for that while we waited on the culture to come back. However, she started running fever again last night, and it was pretty high, so I took her back into the doctor today. The culture had come back by now and it was not staph, but some sort of other bacterial infection. The pediatrician who saw Camille today (ours is out of town and probably very thankful that he gets to miss the latest round of Camille drama) said that it was a really uncommon form of bacteria that is not seen much (gee, sound familiar for Camille?). He also said that this type of bacteria usually does not respond to oral antibiotics. So, he gave Camille a shot of antibiotics today, will give her another one tomorrow (yes, we have to go back into the doctor on a Saturday), and then if it doesn't respond to those, he will have to admit her to have IV antibiotics. Fun, fun.

Not only does she have that going on, but he also thought that she might have RSV. He is going to check her breathing again tomorrow to see if it is better after we have been giving her breathing treatments today.

We also found out today that Camille's DHEA levels are still really elevated, and have even gone up slightly from before. No one knows exactly what that means still, even after these new rounds of tests, which is exceedingly frustrating to me. Apparently, a lot of Camille's sleep/irritability issues could be caused by her elevated DHEA levels, which means that we would really like to figure out a means of treating this to get her feeling better. We have been up with Camille all night almost every night for the past few weeks as she has had a harder and harder time sleeping.

So, I'll try to update you tomorrow on the latest. You all continue to be such an amazing support to us, and we truly do covet your prayers.

Days

2010-01-31T17:36:00.000-08:00

I saw a college friend of mine last week at a wedding, and she wanted to hear all about Camille. I filled her in, and after hearing the whole drama-filled saga, she looked at me and said, "Wow, I just can't believe you have such a good attitude about all of this!" I replied something back along the lines of, "Well, I try to, but I certainly have my days."

Days where it makes me sad, and okay, even a little irritated, to hear about everyone else in the world having healthy babies.

Days where I want to scream if I read one more article about some actress and her perfect baby who sleeps through the night at 2 weeks old and never ever cries. I am thinking about canceling my People Magazine subscription for this very reason, but then if I did, what would Jason read?

Days where I have to hold myself back from saying something inappropriate to some lady at the store who, upon hearing that Camille weighs 11 pounds at 7 months, proceeds to tell me how incredibly off-the-charts huge her baby was, and how she just couldn't stop her from growing! And golly, her baby's head was just so darn big, no doubt to hold her incredibly big brain! Seriously, it's happened. More than stinking once.

Days where I am grouchy about having to go to therapy appointment after therapy appointment, and days where I hate being a "regular" in our pediatrician's office. They know my voice when I call now--it's a little embarrassing.

Days where I feel annoyed about having to save up to pay for all of Camille's medical needs and equipment instead of saving up for a vacation.

Days where I feel irritated that Jason and I can't go anywhere by ourselves for any length of time because Camille is g-button fed, and because she still frequently gets inconsolably irritable.

Days where I completely freak out about the future, agonizing about all of the what-ifs. What if Camille never does this or that? What if something happens to me or Jason--who will take care of Camille? What if Henry grows up feeling neglected because we have to focus so much on Camille's needs?

And on these days, I do feel sad, angry, annoyed and overwhelmed. I do wonder "Why me?", and I do think about how "unjust" all of this is.

See there? I can Pity Party with the best of them.

And then I think about the women that want so badly to have a baby and cannot for whatever reason.

Or I think about so many parents who have lost children to illness or accidents.

Or I think about the people in Haiti. Those who have lost so much when they already had so little. And yet, so many there are still praising God for who He is and what He has given them.

And I am humbled. I am reminded that I am very blessed. I am reminded that my life is so good, so rich, so fulfilling.

And most of all, I am reminded of how grateful I am for one tiny little girl who has already taught me such amazing truths in her short little life.

Bitty Girl

2010-01-27T19:33:00.000-08:00

My blog has a great new look, courtesy of my good friend, Meredith! I decided it was time to ditch the boring blogspot template and actually have something cute and creative! Unfortunately, my cuteness and creativeness are running low (or were they ever high? Not sure on that one!), and so Meredith came to the rescue. Thanks, friend!

Obviously, the blog has a new title, too. Those of you who know me well know that I love to make up nicknames for people. I have been that way since I was a little girl. I probably had 10 different nicknames each for my mom, dad and sister growing up. Henry has inherited that from me as well--he loves to make up all sorts of names for us, and thinks he is hilarious when he calls us something different than our "true" name. Jason and I have various nicknames for both Henry and Camille, but the one that has stuck most with Camille is Bitty Girl. It just plain fits her. The cutest thing in the world, though, is that Henry has started calling her that too. He'll walk into where she is in the morning and say, "Hi, Bitty Girl!" I promise there is nothing more adorable! If I am ever quick and savvy enough to catch that on video (unfortunately, however, quickness and savviness are also at an all time low for me right now ;) I'll definitely post it for your viewing pleasure.

Until then, you might consider this pleasurable viewing. Check out my Bitty Girl sitting! I had her propped up against the couch in these pictures, but she can actually sit alone (propped on her arms) for about 15-20 seconds now! Of course, big brother cheering her on saying, "Yay, Bitty Girl!" is excellent motivation. What in the world did I do to deserve such precious children?

Getting Closer...

2010-01-24T19:02:00.000-08:00

I have two reasons for my delay in posting about our TCH genetics visit. One, I was at a wedding this weekend in San Antonio. A good friend of mine from college was getting married, and my mom and I drove down for it. Jason and the two grandpas kept the kiddos. Let's just say that it took all three of them and leave it at that. I will say, however, in their defense, poor little Camille was sick yet again, which did not make things easier.

The other reason for my delay in posting is that I have been wracking my brain for what to write about the visit, and have come up with virtually zero. We feel like so much happened, but then when we start to talk about it, we can't think of anything to say. It's weird, but then again, so is this whole situation.

Speaking of weird, I guess if I am going to tell the story of our visit, I am going to have to start back at last Tuesday when I received a phone call from the endocrinology office with some very weird test results. If you'll recall, our pleasant endocrinologist had boldly proclaimed that he thought what we were there for was nothing and that there was absolutely nothing endocrine related that could help us figure out Camille's central diagnosis. Uh, yeah, he was apparently very wrong about that.

You see, the results we got on Tuesday are the only truly "abnormal" results we have gotten on Camille so far. We have known that she has something going on, but no objective test has been able to show us much so far. These results were from the blood work the endocrinologist took to measure Camille's hormones to see why it appeared that they were overproducing. One of these hormones, DHEA, came back off-the-charts-high. Basically, a baby Camille's age is supposed to have a DHEA level of 19 to 42. Hers was 780. Yikes.

The kicker is that no one knows exactly what that means. It could still be a genetic condition in which the adrenal glands overproduce, but that genetic condition could not account for Camille's other issues (the small head, low birth weight, failure to thrive, feeding issues, etc.). If she did in fact have this genetic condition, then that would mean that she would have TWO genetic conditions--one to account for the hormones, the other to account for all the other stuff. How incredibly freaking unfair is that? Apparently, though, it's possible.

The other option on the table for a possible cause of this is that she has a tumor on one of her glands causing it to overproduce. Yeah, so I thought the tumor had been ruled out by our most recent ultrasound, but apparently not. We would have to do a CT of her abdomen to be sure.

So, we received this information on Tuesday, and brought it along with us to the geneticist. Let me first say that he was absolutely wonderful. He spent lots of time with us; explained everything thoroughly; talked so sweetly to Camille; and my personal favorite, he looked me in the eyes and said that Camille's condition was not my fault. I know that every other doctor we have seen has said the same thing, but the doubt really starts to creep in as we go longer and longer without a diagnosis. I just keep thinking that maybe if I had eaten more vegetables during my pregnancy, or other idiotic things like that. He once again assured us, though, that Camille absolutely has something genetic, it's just a matter of finding which genetic condition it is.

He explained that there are over 5000 genetic conditions out there, and that each of us are carriers for at least 6, but more than likely even more than that. Watson (of Watson and Crick who discovered the structure of DNA) mapped his own gene sequence and found that he was a carrier for over 30 genetic conditions. Anyway, probably more info than you wanted to know, but the thing is, Jason and I are carriers for at least one syndrome that is the same. The recessive genes have been in our families for generations; they just happened to come out now in sweet Camille.

So, in terms of finding out which syndrome this is, that's when it gets a little more difficult. This geneticist also said that he could not tell just by looking at Camille which syndrome she has. Darn, that would have made things so much easier! But, he did help us sort through a couple of things.

One, I had a list of syndromes that I was wondering about from my own research, and he tentatively ruled out most of those just by examining Camille's features. The catch was that in some of the syndromes, the child "grows into the look", and so we can't say for sure on a couple of them until she is older.

Two, he thinks that the hormone issues are THE KEY in finding Camille's diagnosis.

Three, he showed me how to access and use a database where you can put in different features and see which syndromes match which features. How awesome is that? Or dangerous, depending how you look at it. Jason was rolling his eyes as the geneticist explained all this and I grew more and more excited about my fun new toy. It's like a psycho-worrying, Internet-researching Mama's dream come true.

Four, he did tell us about one syndrome that might explain both the hormones and the other issues, but Camille did not have the hallmark feature of it (a missing or very short nail on the pinky finger). This syndrome is still a possibility, though, and so we'll just have to wait and see on it as Camille grows.

For now, we have to figure out the hormone issues and go from there. We should have additional test results back on those sometime late this week. I will update you after those come in.

That is, unless I am busy playing on my new fun database! Yep, definitely dangerous!

Still Holding Out Hope

2010-01-18T13:13:00.001-08:00

A really good thing that happened so far in 2010 is that our geneticist appointment with Texas Children's was moved up from February 18 to January 21. They had a cancellation, and I just happened to call at the exact right time to get the appointment. And, even better, the appointment is with the geneticist that we had hoped to see, the one that our neurologist recommended. A sign of our luck turning in 2010? Let's hope so!

Anyway, January 21 is THIS COMING THURSDAY! We are leaving Wednesday evening for Houston, and plan on returning Thursday evening, or Friday morning depending on if the geneticist wants to run more tests while we are there.

I am still very hopeful about this appointment. I am hoping with everything I am that this geneticist can pinpoint what Camille has, and put us out of our wondering, questioning, in-limbo misery. It has just been pure torture for me to not have a central diagnosis.

But here's the thing. I am so annoyed with myself for being so hopeful about this appointment. Why in the world would I still be hopeful about this? Our lives these past 7 months have been full of so many questions, and very few answers. We are really no closer to finding out what Camille has than we were when she was born.

In fact, I'm considering writing a children's book about our current situation. It may seem like I am having a psychotic break (and that is not out of the realm of possibility), but I was reading Henry The Little Red Hen the other day, and suddenly a sequel popped into my head. It could be titled The Little Girl Camille and would probably go something like this.

The frantic mommy rushes into the pediatrician's office and says, "Who can help me find out what is going on with my sweet baby girl?"

"Not I," said the pediatrician. "I think she is having digestive issues. I am referring you to a pediatric GI".

"GI, can you help us?" asked the frantic mommy.

"Not I, " said the GI. "I think she has a problem with her heart. I am referring you to a pediatric cardiologist."

"Cardiologist, can you help us?" asked the frantic mommy, getting more frantic by the minute.

"Not I," said the cardiologist. "I think everything she has going on is neurological. I am referring you to a pediatric neurologist."

"Neurologist, can you help us?" asked the frantic mommy, teetering toward the edge and just about to let someone have it.

"Not I," said the neurologist. "Surprisingly, her brain looks normal. I think genetics will have your answer. I am referring you to a geneticist."

"Please, geneticist. Can you help us?" asked the now desperate mommy.

"Not I," said the geneticist. "We have tested this child up and down the street and don't know what she has. We feel sure it is something genetic, but maybe you'd like to see a pediatric endocrinologist to check some of the secondary symptoms."

"Please, please, please endocrinologist. Can you help us?" asked the now wild-eyed and crazy mommy.

And yeah, we all know how that went. His comments really wouldn't be children's book material, so we'll stop there.

And again yeah, maybe our story would make a lousy children's book after all, but that's really a good picture of how I feel. I feel like we have gone around from doctor to doctor, begging for someone to help us, and no one can. It seems like we end almost every doctor's appointment with a referral to another type of specialist. I know this really isn't the case, but I feel like every doctor thinks, "Well, I don't know what this child has, and so I'm going to send them onto someone else and let it be someone else's problem."

So I'm really having to fight hard not to get too hopeful about this appointment because I don't know if I can take another, "I don't know." I am also having to fight off this crazy urge to bust into this new geneticist's office, and say something insane like, "Alright, doc. That's it. We're not leaving until we have a diagnosis."

All that said, we would obviously greatly appreciate your prayers about this appointment specifically. And even though I don't want to ask for this because I hope this doesn't happen, please simply pray for peace for us, even with yet another, "I'm sorry. I don't know. I just can't help you."

Because even if we get that yet again, we will be okay. Camille will still be our Camille, diagnosis or no diagnosis.

And I will still be the frantic, desperate, crazy, wild-eyed mommy, but that's okay too. I kinda like her. After all, she keeps things interesting in this incredibly boring life we have.

Goodbye 2009...Hello 2010!

2010-01-12T06:41:00.000-08:00

First let me thank all of you for your outpouring of support regarding our appointment with THE Endocrinologist. I am still preferring to think of him as a very kind, helpful doctor having a really bad day, or a really strong desire to go play in the Texas snow. Either way, I am SO over him and that awful appointment. After all, Camille doesn't allow us to focus on one issue for too long. We have since moved onto other issues.

And that brings us to my current post. A post reflecting on 2009 and thinking ahead to 2010. I know that a New Year's post would have seemingly been a lot more applicable closer to the actual turning of the New Year, but would you expect anything less than a 12-day late New Year's post from me?

To us, when we look back on 2009, we can't help but see it as a year of such loss. In a lot of ways, right or wrong, we feel like so much was taken from us. In January, we lost Jason's mom, Sharon, after a long battle with ovarian cancer. I can't tell you how difficult that was and still is. We miss her more than ever still now, and I know we will for the rest of our lives. I still tear up every time I think about her and how much I wish she were here. She would love getting to see Henry at this fun age right now, and she would be Camille's biggest cheerleader and supporter.

After we lost Sharon, I kept telling Jason that Camille's birth would be the "bright spot" that we needed in our lives right then. Of course, we had no idea during my pregnancy that Camille had special needs. I am thankful for that. I always said that I would want to know if something were "wrong" in order to prepare before the birth, but I really didn't. There's no way to prepare for something like that anyway, and I am so grateful for those months of my pregnancy where we were blissfully ignorant of what was to come.

Camille's birth brought with it such a mixture of emotions. Jason noted a few weeks after she was born that we never really got to celebrate her birth because there was so much anxiety and concern surrounding it. Again, such a feeling of loss, such a feeling of being robbed of the joy of our daughter's birth. Instead of celebrating with balloons and flowers, we spent a month driving back and forth to the NICU, each time walking in the door and wondering what the doctor was going to tell us then about what was "wrong" with our baby. I can't tell you how dark those NICU days seem to me. I can't begin to describe the feelings of despair I felt then.

There were so many things that we just had to "get over" and "work through" during that time. It was a complete change of thinking. When your child is born with special needs, you have to completely revamp your perspective, your sense of what is normal, your idea of what the future should look like. This is not a bad thing, but it is so hard.

And so the second half of 2009 continued with specialist appointments, therapy sessions, and so many unanswered questions. Then, in November, another loss came. My boss, but more than that, my mentor and friend, passed away after a long battle with breast cancer. Charlotte was so similar to Sharon in that they were both such strong, amazing people who changed so many lives. Cancer took two very special people from us in 2009.

And there it is again. That feeling of having so much taken from us. I guess it is easy to focus on that, and some days, that's all I do. But then, other days I realize that that is exactly what I should not being doing. I remind myself to look at the flip side, and see the gain among the loss. And I believe that in Christ, we can do that.

We lost Sharon and Charlotte, but they have gained eternity in heaven with the Savior who they both loved with their whole beings. I can think of no two people who deserved their place in heaven among the saints more than those two special women.

We lost our celebratory, "normal" birth of our daughter, but we gained a precious, fighter of a little girl in our Camille. To see her and who she is as a "loss" because she is different is, to me, saying that she isn't as worthy as a baby born as "typical", that she is somehow defective because she is different. I absolutely refuse to think that or let anyone else think that. It is simply not true. She is our Camille, created in the image of God, created to be exactly who she is. How can we see any loss in that?

All that to say, I have to admit that I was very much looking forward to the end of 2009 and the beginning of 2010. A couple of weeks before the New Year started, I told Jason that I was so excited for January 1, 2010 because I just knew it was going to be our best year yet. A year full of answers, a year full of hope, a year full of joy! Jason looked at me, shook his head, and said, "You do realize that the turning of the New Year is really just a day that was arbitrarily picked out on the calendar. January 1 is just a day like any other."

Okay, so I had never really thought of January 1 that way. This is why he has his Ph.D. and I am only dreaming of working on mine. I refused, however, to let his very smart comment deter me. I was convinced that on January 1, all of our troubles were going to disappear.

And it really felt like 2009 was getting in a few last jabs at us when on December 31, Camille had an ultrasound to make sure that she really didn't have a tumor on her adrenal glands or ovaries (and she doesn't, by the way! Praise God!). Or when we received a phone call from the cardiologist, also on December 31, that the results of her halter monitor were in and her heart rate was indeed dropping into the low 50's, much to their surprise, and they had no idea why or what exactly that meant. I was convinced these last minute 2009 jabs were huge indications that our luck was about to change starting January 1.

Well, not really. My hubby was right as usual. January 1, 2010 dawned just like any other day, and we've already had our share of issues. Our washing machine flooded our house again, and so we have had to purchase a new one. Our dog had some sort of choking/seizure episode where I truly thought she was going to die right then, which would have prompted me to have to commit my husband considering he loves that dog more than me and the kids combined. The docs decided that Camille needs to wear an apnea monitor for a few weeks, which will cost a very pretty penny just like our shiny new washing machine. Our power went out on the coldest day of the year so far, and we had to take the kids to a hotel to spend the night because it was not fixed when the electric company said it would be. You know, typical Whitt sort of occurrences.

I guess the turning of the New Year can't rid us of our day-to-day difficulties, but we are still hopeful for a great year. After all, if we can look at 2009 and see a year of gain in so much loss, we can surely see 2010 as a good one too.

Happy New Year to you all.

THE Endocrinologist

2010-01-03T21:31:00.000-08:00

I feel like we have really seen it all, or at least seen a lot, when it comes to medical personnel. I like to think of it as the good, bad and the ugly, or maybe rather, the weird, weirder and weirdest. In any case, I feel like I have shown great restraint when it comes to blogging about all of the "characters" we have met in the medical profession. Mainly this restraint is due to my husband saying after every appointment, in a very admonishing tone, "Now don't go and blog about him/her." But, whatever the reason, I have been quite proud of the restraint I have shown. After all, we have really met some good ones.

For instance, there was the lab geneticist who came to evaluate Camille when she was 3 days old. She showed not one ounce of compassion, but instead examined my newborn daughter as if she were one of her microscope slides. She then proceeded to tell us how she and her lab buddies liked to make bets on which kids had which diagnoses.

And then there was the touchy-feely surgery PA, who I swear if he had rubbed my shoulder just one more time during our appointment, I was going to break out some of my self-defense moves I learned in college.

And of course, I can't leave out the sweet, but slightly strange, little ultrasound tech who was making all sorts of weird noises to Camille during one of Camille's many ultrasounds. I suppose at one point I gave her a questioning look, and so she explained that all babies liked her noises, but only the ones that her cat approved first. You see, she would try all of her noises out on her cat, and if her cat liked them, then it was a sure-bet that the babies would too. No seriously, not making this stuff up.

Yes, I do believe I have showed great restraint by refraining from blogging about these folks. At least up until now.

You can blame it on THE endocrinologist that we saw recently for pushing me over the blogging edge, and causing me to finally let loose on all of these medical people. Don't get me wrong--we have met some awesome ones too. I absolutely adore Camille's neurologist, and our pediatrician has been wonderful to us, especially these last few weeks.

But this guy--THE endocrinologist--he is a completely different story. Our appointment was last week, in the late afternoon. It was supposed to be snowing/icing/sleeting around the time of our appointment, and so I called to see if they were still going to be open, and they were. It was indeed snowing pretty hard by the time we got there, and we were the only people in the office. You could tell from the moment he walked in that THE endocrinologist was not happy to still be there. Maybe he wanted to go home and play in the snow, maybe he was worried about the roads, maybe he is just plain unfriendly all of the time, but when he walked in and said to us in a disgusted tone, "What are you doing here?", I could tell this was not going to be a fun appointment. And things just went downhill from there.

Continuing in his completely unfriendly, lofty, disapproving tone, THE endocrinologist proceeded to make us feel completely inept and uncomfortable. He really didn't have a clue as to why we were there--he had not read Camille's chart at all. He had done no other prep-work for the appointment, such as obtaining the lab results for the tests that had already been run by our pediatrician. Instead, he berated us for not having copies of these labs. He then gave Camille a less-than-one-minute-glance-over-exam, and said that he thought what we were there for was really "nothing", but he would run a couple more labs just in case. He proceeded to use what I'm sure he fancied to be "big, impressive words" to describe the tests he would run, and then with a huge yawn, said he would follow up with us in 3 months. The real kicker, though, came when he said, as he was inching toward the door to go home and play in the snow or something, "Look, if I were you, this stuff would be the least of my concern with all of the problems she has." He topped this off with a disdainful gesture at Camille, and waltzed out the door.

I was literally seeing red. I promise, I was. I couldn't see for my eyes burning; I couldn't hear from the blood rushing to my ears; I couldn't talk from shaking so hard. I could not believe the treatment we had been given. I was absolutely furious.

I have since, however, calmed down and tried to think of THE endocrinologist in a different light. Maybe he was having a bad day; maybe he thought he was being friendly and helpful; maybe he was overtaken by an evil spirit for the duration of our appointment. Okay, so that last one really isn't "thinking of him in a different light". In any case, I have somehow managed to get over my anger.

We will, however, be seeing another endocrinologist for our follow-up in 3 months. No amount of "thinking about him in a different light" could change that.

And so, in an effort to end on a lighter note, I will return to my showing of great restraint and refrain from talking anymore about THE endocrinologist, but instead will leave you with 2 adorable Henry stories.

The first happened a couple of days after Christmas when Henry, Jason and I were shooting baskets with Henry's new basketball goal that Santa had brought him. At one point, Henry missed a basket and shouted, "Oh God!" I looked at him in sheer horror and disbelief. That is just one thing that we do not say in our house! I mustered up my best mommy voice and said, "Henry, we do NOT say that!". I emphasized the "not" part really well, hoping to drive my point home. And it worked, sort of. On his next miss, my precious, adorable little boy, who was no doubt trying to comply with his mommy's wishes, shouted, "Oh NOT God!"

The second happened just today, as we were getting into our car to leave church. I was talking to Jason and said something like, "I guess I have a reputation for that." Henry, who had already announced that he was starving, must have thought that a reputation was some sort of very tasty treat because he shouted from the backseat, "I want a reputation! Mama, I want a reputation!" Laughing, my very quick husband replied, "You've already got one, son. Boy do you have one."

We get some important lab results on Camille back tomorrow, and so I will update soon on those. Until then, may your first days of the New Year be filled with joy and peace.

Family Photo

2009-12-24T21:08:00.000-08:00

Merry Christmas from the Whitts!

How We Do This

2009-12-22T09:07:00.000-08:00

It's really interesting the comments I get from people sometimes when they find out about Camille and all she has been through in her little life. The one I seem to get the most is "I don't know how you do it." It's funny because I never really know how to answer this one. One reason for that is that this comment implies that Jason and I are doing something really great. We are so not. Ultimately, we're not doing anything all that special. We're just caring for and loving on the little girl God gave us, just as any other parent would do. I never dreamed I would have a child with special needs. In fact, I can remember telling God on several distinct occasions that He could never give me a child with special needs because I could not handle it. But, we are handling it. Not very well at times, but handling it all the same. Sometimes I don't know how, but we're managing to somehow make it through each day.

And that is the other reason why I find that comment difficult to answer. I have in the past answered something like "We don't know how we're doing it either." And that's how I have felt on a lot of days. But then, some moments remind me of exactly how we are doing all of this, and not instead hiding in the closet crying somewhere (definitely an option I've considered at times).

The most recent moment came during the most awesome Cowboy game ever played--last Saturday's game against the Saints. We had our good friends--Brian, Sarah, and their little boy, Luke--over to eat pizza and watch the game. Let me give you a little background on our friendship with Brian and Sarah. It can really all be summed up like this: they are not our friends. They're family. We have been through so much together, the four of us. Lots of moves, and lots (and lots!) of husbands in grad school. Lots of disappointing Cowboy and Baylor losses, and lots (and lots!) of laughter at our children. And this is such a trite statement to make, but I'm going to make it anyway because it is so very true in this case. The Briscos have truly "been there" for us. And I hope that we have done the same for them too.

So we were at our "pizza pawty", as Luke and Henry liked to call it, watching the Cowboys, and I couldn't get Camille to sleep. Sarah offered to hold her for a minute, and she started talking to Camille about Camille's love for Kenny G because we had been laughing about that earlier. Not that there is anything wrong with Kenny G, but Camille has an obsession. It's Kenny G, or no music at all. No one else will do.

So, Sarah and Camille were chatting about Kenny, and Camille apparently thought it was a hilarious conversation. She started smiling these huge smiles that lit up her whole face. And here's the really special part--Sarah was so excited! She loved that Camille was interacting as well as she was, and that she was happy and smiling. She called for Brian to get the camera, and they took some pictures of Camille smiling at her Aunt Sarah.

That was so special to me, that our friends were so excited about all that Camille was doing and accomplishing--however small those things were. And let me add in here that this was after Sarah had kept Henry all afternoon the day before because we had to take Camille to the ER with a possible obstruction in her belly. (Long story, but she did not have an obstruction, thank goodness!). Sarah has kept Henry on so many occasions for us, often on very short notice, and often after she has come home from teaching 2 year olds all day, only to have to take on my very busy little 2 year old!

And that is how we're doing it. We have friends like the Briscos and all of you, who are constantly blowing us away with how much you care for us. There are so many other examples--our other friends who have special needs children who give us great advice and understand our feelings like no one else can; our friends from church who have us over to their home every Tuesday evening and make dinner for us just so we don't have to do that for ourselves that night; our parents who have literally burnt up I-35 between DFW and Waco in order to come down and help out. It's mind-boggling how much help and support we have, and we could not do this without it.

And so, as we get closer and closer to Christmas, I am reminded each day what gifts we have in our family and friends. I am reminded too of so many who have trials in their lives who do not have the help we do. I am reminded to look for opportunities to help others as others have helped us.

Merry Christmas to you all.

Our Mystery

2009-12-18T06:45:00.000-08:00

Since the day Camille was born, she has been a little mystery. Her neonatologist called her a "puzzle". Her pediatrician has said he has "never seen anyone else like her". She has befuddled the entire Cooks genetics team, and after yesterday, we can even say she has done the same to Cooks neurology and cardiology.

Yes, it's true again. All tests came back normal. She had her EEG first, to check for seizures and abnormal brain activity. Let me just add in there that her EEG was scheduled for 8:30 a.m. in Fort Worth. Have you ever tried to get a 2-year-old, a 6-month-old, and a naughty dog ready to leave at 6:30 a.m. for an hour and a half drive to a rigidly set appointment? Oh, and let me say too that Camille was supposed to be sleep-deprived. Have you ever tried to keep a 6-month-old awake on a long car ride? It was definitely fun times! Especially when I-35 was backed up all the way from I-20 to Burleson.

All that to say, we made it for the EEG, slightly late, but she was still able to have it done. And the results thoroughly baffled our neurologist. His exact words when he gave us the results were: "It was remarkably normal." He said that he even went and had a colleague (who is supposedly the best at reading EEGs) look at it to make sure, and he agreed that it was completely normal. What does that mean exactly? Well, it means that it appears that she is not having seizures. It doesn't mean that she has never had a seizure or never will, but currently, it appears that she is not. It also means (and here was the really baffling part for our neurologist) that her brain activity was normal, organized and developmentally appropriate. He said that a lot of times, children with a genetic condition, or a suspected genetic condition as in Camille's case, will have a very disorganized brain activity pattern on their EEG. Camille's, however, was "remarkably normal". Remarkable--that certainly is our little Camille!

The neurologist went on to say that he also completely agreed that Camille had something genetic, and he was very pleased that we would be seeing a geneticist at Texas Children's in Houston in February. He said that he really felt like we would eventually find out what Camille has, and then all of this would make sense.

And there it is again. I am thrilled that Camille is not having seizures and that her brain activity is normal, but that also means that we get another big, fat, highly annoying "I don't know". I am getting really tired of those. If we were getting all of these normal results, along with a "See, there's nothing wrong--she's completely fine!", then I would not be so concerned. I would be just plain thrilled, not thrilled with the nagging irritation and worry that I am feeling now. But instead, what we're getting from every doctor we have seen so far is: "Well, the latest test results came back normal, but we don't know how in the world that is. There is something wrong--we just haven't found it yet."

It was the same song, second verse at the cardiologist. Camille had another heart echo done, and the structure of her heart is normal. She is wearing a halter monitor now for 24 hours just to check again to make sure that her heart rate is still in the normal range, but the cardiologist feels like it will be. No one can explain the heart rate drops or the blueness she has around her mouth, hands and feet at times. Perfect strangers come up to me and remark at how concerning it is that my daughter's extremities are purple, but we have now seen 3 different cardiologists at Cooks who can't explain that.

So, here we are again, stuck in the same annoying place, trying to focus on the good parts like that my little girl's brain and heart still appear healthy, and trying not to focus on the fact that we still really don't know anything more. It does appear that Camille will be able to be seen by the pediatric endocrinologist by the end of the year, which is very good. Now everyone agrees that endocrinology might have some answers. I'm hopeful, but I'm also trying not to get my hopes up too much.

After all, we've got a little mystery. And it appears that she doesn't want to be figured out just yet.

The Latest

2009-12-15T19:08:00.000-08:00

I thought about titling this post in the same manner I did my last post (by using a single word), but all of the words that came to mind were a whole heck of a lot stronger than "irritated", and remembering how many Baptist folks read this, I decided against it. But you can use your imagination, and after you read this, I'm sure you will be able to guess many of the inappropriate title words I considered using.

It all started last Monday when I took Camille in for her 6 month check up at her regular pediatrician. I took her by myself, having told both Jason and my mom that it was just a "routine" appointment and so I didn't need anyone to go with me. When am I going to learn that nothing is "routine" with Camille? To make a very long and crazy story short, I left the pediatrician's office on Monday with an EEG/neurology appointment for suspected seizures, a cardiology appointment to again examine Camille's heart for defects, and a very long list of labwork that we were to go over to the lab to immediately get done. The labwork was because our pediatrician noticed signs that Camille's hormones might have begun over-producing, to which he said the cause could be anything from another genetic condition to a tumor. Yes, he said a freaking tumor. And I didn't pass out. I was so proud.

He actually looked at me at the end of her appointment, after he had told me that he thought she might be having seizures, and that he was still concerned about her heart, and that he thought she could possibly have a freaking tumor, and said: "You're handling this pretty well." To which I wanted to say, "Really? Well, let's recap, shall we? From the moment my daughter was born, doctor after doctor after doctor has told me that there are all of these crazy, unheard of, obscure things 'wrong' with her, and yet no one can tell me why. And now, you are telling me even more crazy things that could be wrong with her, and all I can do is nod my head. What the heck else can I do?"

So I did. I nodded my head, I took Camille to get her bloodwork done, and I went home. Part of me wanted to laugh hysterically at the insanity of it all. But I was afraid that if I did that, it would turn into crying, and I really felt like this time, if I started crying, I might never stop. A friend asked me this past weekend, not knowing about this latest, if we were beginning to get some answers. When I shook my head with tears welling up in my eyes, unable to answer yes or no, she immediately understood and said, "No answers, just more questions, huh?"

And that's exactly it. I kept putting off writing this, hoping each day that we would have some answers about all of this new round of stuff, so that when I blogged about all of it, I could at least offer some explanations along with all of the new weirdness.

But no. Once again, I got a call from the doctor's office regarding Camille's labwork, and once again, they had no answer for me. The conversation went something like this:

Nurse: "We just wanted to let you know that Camille's labwork came back normal."

Me: "That's great! So that means that she doesn't have any of the things that he thought she could have? Mainly, I mean the tumor?"

Nurse: "Well, no, not exactly. It just means that he doesn't know what is causing it. He has no idea why the labwork came back normal. He still thinks something like that has to be causing it, but he doesn't know what. He's going to refer you to a pediatric endocrinologist."

Me (what I wanted to say): "Super! Another specialist! Just what I wanted for Christmas! Thanks so much!"

Me (what I really said): "Okay. Great. Thanks."

Yeah. So that's where we are. Oh, and don't let me fail to mention that we were back at the doctor today because Camille began vomiting over and over again late last night. She apparently has a stomach virus. The virus has also made it very difficult to feed her by g-button because it has caused her stomach to swell so much that nothing will go down the tube. If this continues into tomorrow, our pediatrician will have to admit Camille to the hospital to keep her hydrated. You know that things are bad when your pediatrician actually tells the nurse after the appointment to refund your co-pay because you have been in his office so much, and he hates for you to have to pay again. Wow. That's up there with the time when Henry was a baby and was screaming so loud when I was ordering a Coke at Sonic that the manager told the girl who brought out my order to give it to me for free since it sounded like I was having such a hard day.

Prayers--lots and lots and lots of prayers--would be appreciated right now. We have Camille's EEG/neurology appointment and her cardiology appointment this coming Thursday at Cooks, and I will try to post right after those to let you know what we find out.

Irritated

2009-12-05T19:53:00.000-08:00

I must admit that I have been feeling a bit irritated lately. After our hopeful visit with the clinical geneticist who left the appointment telling us that she had some "very good ideas" on what Camille might have, we got a call from the genetics counselor last week who told me that Camille has "officially stumped their genetics team." Huh? Excuse me? Did I hear you right? Apparently, the clinical geneticist that we had met with spent the week after our appointment researching her "very good ideas", and came up with nothing. As sort of a last ditch effort, they want to do one more test (more on that below), but otherwise, they have essentially given us a diagnosis of "unknown genetic condition". They encouraged us to have Camille examined by other geneticists in the state to see if they can determine what her condition is, and we are planning on doing that soon.

The final test they would like to do is a skin biopsy, and what they are looking for is something chromosomal. Yes, chromosomes. Again. I feel like we are going backwards in some ways. Apparently, most chromosomal syndromes can be detected on a blood test, which Camille has had. She has actually had two separate chromosomal blood tests, one from Scott & White and one from Cooks. Both came back normal, even on the more sensitive microarray test done at Cooks. But, sometimes, if the chromosomal problem is mosaic (meaning not present on all of the cells, but only on some of the cells), then the problem will not show up on a blood test, but will show up on a skin test. Since everyone originally was convinced that this was something chromosomal, they want to check to make sure that it isn't, hopefully once and for all.

So okay, we'll do the skin biopsy. Fine. That's not what has me irritated. What has me irritated is that I want some answers, and I'm not getting any. And it is looking like I may never get them. All I'm getting is a "Well, we'll try this one last test", a test which it really seems like no one thinks will turn up anything.

And nothing that any of these genetics people (nice as they may be) are saying is helping. I don't care if they are only able to diagnose about 50% of children who are suspected to have a genetic condition. This is my child we are talking about. My sweet child who has been poked, tested, scrutinized, and evaluated countless times, apparently for nothing. Statistics are meaningless when you are talking about your child.

And I guess what is really at the root of my irritation is that I feel like I have already accepted so much, and I just plain don't know if I can accept this too. I've had some real long conversations with God lately that go something like this: "Okay, God. I've accepted that my child is different. I've accepted that she may never do most things that other children do. I've accepted that she will likely have health problems her whole life. And I even have a good attitude about it. Well, most days. There are the days when I see those babies who are around Camille's age, with their bowling ball sized heads, and their giggles and smiles, and they are drinking from their bottles or nursing with no problem at all. Those days are hard. Most days, though, I'm good. But now this? Now I have to accept that I may live my life not ever knowing what makes Camille the way she is? I may have to wonder every day how her 'unknown genetic condition' is going to affect her life expectancy, her health, her development? I'm going to have to tell everyone we meet who gives me a curious look when I tell them that my newborn-looking baby is really a 6-month-old that 'She has something genetic, but we just don't know what?' That's what I have to accept now?"

And so, I'm irritated, and trying desperately not to be. I know that ultimately, I will accept whatever happens because I have to. But it's all just really hard right now. It's a darn good thing I have so many things that take my mind off of this.

Things like Camille rolling over (and over, and over, and over!);

Things like Henry saying, "I love you, Mama", at random points throughout the day, totally unprompted, and then when I ask him for a kiss, he'll get a gleam in his eye and kiss me on the knee or the arm, obviously thinking himself to be completely hilarious;

Things like having Bones-watching marathons with my hubby (If you have never watched this show, you are missing the best show on TV! Go out and rent the first 4 seasons on DVD, and I promise you will be addicted!);

Things like returning to church after such a long absence, and feeling such amazing support and concern from our church family;

Things like sitting in the dark, looking at our Christmas tree that Henry so sweetly "helped" me decorate, thinking about the birth of my Savior, and the sweet peace that His coming brought to the world, the same sweet peace that He gives me everyday, even through all of this.

And really good things like that always trump even the most nagging irritation.

At least on most days.

Moving toward an answer...maybe...

2009-11-19T07:27:00.001-08:00

We had our meeting with the clinical geneticist yesterday. I have been picturing what this meeting would be like for over 2 1/2 months (that's how long we've had the appointment), and I can definitely say that none of the scenarios that I had played out in my head ended up occurring. I guess I was thinking that the clinical geneticist would walk in and say, "Oh, I know exactly what this is!" or "I think it could be this, this, or this, but we need to test and see". And then there's the worst scenario that I had played out in my head, the one where the clinical geneticist walks in and says, "Oh, she doesn't have something genetic--she is the way she is because you ate lunch meat during your pregnancy! Shame on you!"

No, seriously, I have still held onto that irrational fear that Camille is having all of these difficulties because of something I did during my pregnancy. Was it because I ate lunch meat sometimes? Or was it because I drank a Coke occasionally? Or was it because I carried Henry around for the entire pregnancy? Or because I possibly had a fever at the beginning of my pregnancy? Or because we had such a stressful, sad year where I had done more crying than I had my entire life? I have literally scrutinized every possible thing that I could have done during the pregnancy to cause Camille to be born with the issues that she has, and I have agonized about the possibilities. Even though doctor after doctor has told me that it was nothing I did, I still have not been able to let that go.

I think I finally can now. Although the appointment did not go the way I pictured it going, and although we are still left without a diagnosis, this geneticist and her 30+ years of experience has finally relieved me of my agony about "causing" this for Camille. In a nutshell, she said that she definitely thinks that Camille has something genetic, meaning that it was some mutation on some gene that caused this, and nothing about the pregnancy. Nothing. She also said that she thinks that she has seen one other child in her experience with features similar to Camille, and that she has some ideas on what syndrome Camille could have, but she wants to go back and do some more research and consultation before she tells us anything more.

I guess you could look at this two ways, and Jason and I of course did. Jason, Mr. Positive Optimist, thought that she could know what it was, or maybe didn't really know, but wanted to do some more checking before telling us something and having us get our hopes up, or worry prematurely, about something that might or might not be. Maggie, Mrs. Worst Case Scenario, thought that it meant that she thinks Camille could have something horrible, and she doesn't want to tell us yet until she knows for sure because it is so awfully terrible.

Yeah, let's go with Jason's view instead. So, we are waiting again, which is at least a familiar place to be. We'll let you know when we hear anything further.

Thank you for keeping up with Camille and her story. As I told Jason as we ate lunch after our appointment yesterday, it absolutely blows my mind that my child could have something so rare that no one knows what it is, or that a geneticist who has seen thousands of children might have seen one other who looked similar to Camille. Some might see that as a "poor us" sort of thing--why should we have to have such bad luck? But, although I have many "poor us" moments, that's really not what I think when I think about Camille having something so rare, so different, so unlikely. I seriously think, "Wow! God has given us such a unique child. A child who is different and special, who is just the way she is supposed to be, just the way she was fearfully made. A child who will bring us blessings and joy that very few others get to experience." And as we move toward a possible answer, I hope to keep that thought central in my mind and heart.

Happily Busy

2009-11-16T19:42:00.000-08:00

I know that I have not updated my blog in a very long time, even for me! My commitment to try to update every day or every other day has been blown to bits with this absence! But, I have some good reasons for it. I guess you could say I have been busy--happily busy--doing many different things like...

...enjoying my happy 5 month old baby girl! You read that right--I did say "happy!" A few weeks ago, Camille was put on a muscle relaxant for her irritability and stiffness. The physical therapist who is seeing Camille explained it like this: Camille has stiff muscles, which makes her irritable because it is uncomfortable, which makes her more stiff, which makes her more irritable, etc. It's a cycle that can be broken (or at least helped) with a muscle relaxant. In Camille's case, it has done wonders. She has gone from crying all the time to crying hardly at all. She is now smiling most of the time, and has started really interacting with us. She is also sleeping better, too. It's not a miracle cure--she still has some inconsolable moments, and she is still pretty stiff, but she is better, and we are so thankful.

...trying desperately to keep up with my "happily busy" 2 year old. He is 100% boy, and 150% wild! This little boy plays harder than any other child I know. He seriously never stops--I even catch him wiggling in his sleep! But he is oh-so-much fun! I caught him the other day in a rare still moment. He just crawled up into my lap, and snuggled up next to me. I was looking into his sweet little face, and breathing in his sweet little smell, when all of the sudden, he looked up at me innocently, jabbed me in the eye with one finger, and said simply, "Poke". And just like that, my sweet moment was over, but not before I had a really good laugh.

...taking Camille to all of her therapy appointments. She is now having physical therapy twice a week and occupational therapy twice a week. She will begin speech therapy sometime after the first of the year. So far, the sessions have gone well. She is not really too behind developmentally, which was encouraging to hear, and she has already made improvements in therapy.

...feeding Camille by spoon! Again, you read that right! Since she is still refusing the bottle as if it is pure poison, one of her OTs suggested that I try introducing some solids by spoon so that at least she would be getting some practice eating orally. Turns out, Camille thinks eating by spoon is great fun, and she is pretty good at it too! So far, she has had rice cereal and applesauce. Everyone sees this as a very hopeful sign for her future as far as eating goes, which is a big relief to us.

...cheering on the Baylor Bears. Jason and I got season tickets for football again this year, and we have enjoyed getting to go to the games as our "dates" while my parents watch the kiddos. Well, at least I have enjoyed it. I'm not sure that Jason enjoys going to Baylor games with me. I think I embarrass him on a regular basis. I tend to get a little "in" to the games. Well, maybe more than a little. I guess it's not proper for an ordained minister's wife to stand up and yell, "Throw the stinkin' flag" or "That's the stupidest call I've ever seen!" To be fair, the Bears were playing Texas this past weekend when I might--or might not have--yelled those statements. If Baylor so much as thought about committing a personal foul, the refs called one. Everyone knows Texas always gets all of the calls, right? And to be really fair, Jason has only had to pull me down by the waistband of my pants one time in one game. And that was a basketball game against A&M, where I really did have to tell a group of very obnoxious Aggies to "Sit on down" after they were on the beneficiary end of a very bad call. Who cares if I was 5 months pregnant? They were being incredibly annoying! Totally justifiable, if you ask me. Anyway, win or lose, we still have the cutest Baylor fans around at our house, don't you agree?

...and finally, probably most importantly, we have been receiving very good news. Camille does not have any of the 3 syndromes that I mentioned in my last post that the geneticists thought she could have. As I have said before, it's great that she doesn't have any of those 3 (they were all really severe syndromes), but it is still hard not to have an answer. We meet with another geneticist this Wednesday. She is supposedly really good at identifying syndromes--she has 30 years of experience doing just that. We are hopeful that she will be able to help us. Please pray for that appointment. Pray for peace at whatever the outcome, answer or no answer, good answer or bad answer.

I will try to start updating regularly again, happily busy or not!

The Crazy World of Genetics

2009-10-19T20:08:00.000-07:00

Well, Henry and Camille survived the Swine Flu! We are so relieved that they appeared to have mild cases, Henry especially. That boy was up to all his old tricks after one dose of Tamiflu. I see now why it is in such high demand--it's apparently magical! Camille took a little longer, but she got over hers pretty fast too. She was even able to make her Ophthalmology, Gastro and lab appointments in Fort Worth on Thursday! I, however, was not. I'm not sure if I had the flu, or if I was just stressed about both of my little ones having it, but either way, I felt like I had been run over by a truck on Thursday and Friday. Good thing I have such an amazing husband, parents, and father-in-law who all pitched in to help Camille get to where she needed to go on Thursday, and treat Henry to several days of fun.

And so now, we just continue to live in limbo in what I like to call "The Crazy World of Genetics". Never been there? I never expected to be there either. All I knew about genetics before Camille's birth came from a course-by-video class I took at TCC the summer after my freshman year in college to fulfill one of my basic science credit requirements. I basically thought genetics was about punnet squares and pea plants. I had no idea it could mean all this.

It is absolutely insane what is out there. There are all of these syndromes that no one has ever heard of, and they can be absolutely devastating. We are seeing this now first-hand. It's a true nightmare. Our genetics team has basically narrowed it down to around 3 (they added one more today that they think it could be) syndromes, and none of them are good. In fact, each one seems worse than the last. It's like we think, "Oh my gosh! What could be worse than that?" and then we find out exactly what that worse thing could be. I guess we should stop asking that question, huh?

You see, as I've mentioned before, the chromosome test coming back normal was a good thing, but also a not-so-good thing. We were glad that Camille did not have a chromosomal syndrome, but now after hearing about the other genetic syndromes she could have (now that chromosomal syndromes have been ruled out), we are almost wishing it was a chromosomal problem.

One of the things that is really hard about these genetic syndromes that they believe Camille could possibly have is that they are inherited in autosomal recessive pattern. Don't worry--I'm not going to draw a punnett square. What autosomal recessive means, though, is that both Jason and I would have to be carriers of the defective gene to have passed the syndrome onto Camille. With each pregnancy, we would have a 75% chance of having a child without the syndrome, and a 25% of having a child with the syndrome. A "good" thing about the chromosomal syndromes is that they are not autosomal recessive. Most of them occur as just random mutations that would be extremely unlikely to occur again in another pregnancy, or in the family later on down the line.

But with the autosomal recessive syndromes, like the ones we are now looking at, we have to come to terms with several things. One, we could not have any more children unless we wanted to risk passing on this syndrome again, and having another child suffer through all that Camille has. Two, Henry could very well be a carrier for the syndrome too, and therefore would need to be concerned about passing the syndrome onto his future children. Three, and this is the crazy one that might sound weird to anyone who hasn't been through this, there is this strange feeling of "fault" or "blame" that Jason and I feel about this. It's as if we feel this certain guilt that we could have passed on something to our child that is making her so miserable. It wasn't a random mutation--we gave it to her. Of course, it was not that we knew about it, or wanted it to happen, but still. The thoughts you have going through something like this are often so irrational, but they're there.

Going along with this, it's interesting how I never dreamed that any of this could happen to us. Maybe that's why I thought genetics was about punnett squares and pea plants--because I ignored all of the rest. I had heard about certain genetic syndromes, but I thought, "There's no way that my children could have something like that." It's like a certain kind of arrogance (sure probably a naivete too, but I think more of an arrogance) that I thought, and I think others think too if they are honest, that there was no way that I could pass something like this onto my child because I have "good genes". There's nothing like that in my family. (The fact is, most of the time that these things happen, there has been no history of it in the family. It's been in the family's genes the whole time, but just never surfaced).

And then there's the fact of these syndromes being so rare. I would think, "Oh that's so rare, that could never happen to me." We've learned that lesson the hard way this past week. Just because it's rare, doesn't mean it can't happen. One of the 3 syndromes they are now looking at is so unbelievably rare that it only affects 50 people in the world.

So that's where we sit now, trying to come to terms with things that we never thought could happen to us, to our sweet child. Things like: severe mental retardation, degeneration to a persistent vegetative state, extremely shortened life span. It's just plain hard. Add to that the fact that Camille is still very irritable and uncomfortable, and you have a pretty dismal situation.

But then you add in a sweet little 2 year old boy, who has learned to wrap his arms around your waist and squeeze you in a big bear hug; who has you in stitches constantly with the things that he says; who adores his baby sister in a way that brings tears to your eyes.

And then you add in the best family and friends in the world, who check on you and love on you and listen to all of your babbling about genetics and autosomal recessive patterns.

And finally, you add in our God, who thankfully is above everything, including the rarest, most horrific-sounding syndromes in the world. And even more thankfully, that amazing God created our Camille in His image. There is no more comforting thought to us right now than that.

When it rains...

2009-10-13T18:35:00.000-07:00

...it pours. Especially at our house! Both Henry and Camille have Swine Flu. Camille was running a fever Sunday night, but it went away on Monday, so I thought she was okay. She slept a lot yesterday (which allowed me to do some cooking/baking I have been wanting to do during her naps--chocolate chip pumpkin bread, taco soup, trash/chex mix--all Fall-time comfort food, of course!), but she still seemed fine. Then, last night, her fever returned, and she cried like she has never cried before for over 2 hours. Jason and I tried everything to console her, but nothing worked. She has cried inconsolably before, but never quite like this. Usually there is at least a little time where we can calm her, but not last night. We finally got her to sleep about 1:00 a.m., and then she woke up crying again a few hours later. Her fever continued to climb throughout the morning, and then at 11:00 a.m., Jason called to tell me that Henry's school had called, and that he had a fever. Jason went to get Henry, and I called the doctor to get them both in to be seen.

I never assumed it was the flu--neither of them really had any other "flu-like" symptoms other than fever, and they had not been around anyone who had Swine Flu that we knew of. Henry was his usual happy, busy, wild-man self. He wasn't acting sick at all, but he was very flushed, and very warm. I thought he might just have a little virus, or that it was his 2-year molars that are coming in. Camille has low-grade fevers off and on a lot, but this time, since it was getting higher, we thought maybe her button was infected. We made them separate appointments at the doctor because we didn't want to have to take them both in at the same time while Camille was having such a hard time. So Jason took Camille in at 1:00 p.m., and called shortly after that to tell me that she had Swine Flu. She is too little for Tamiflu, and so we just have to let it run its course. The good thing is that we can keep her hydrated with her button, and our doctor went ahead and gave us an antibiotic to prevent a secondary infection. I took Henry in later on in the afternoon, and he has it too. He can take Tamiflu, though, which is good because it works really well with Swine Flu, just not necessarily with Seasonal Flu.

So, after paying out the nose for these 2 prescriptions (they are apparently both "special prescriptions" and so even with our insurance, they were expensive!), we are home and doing okay. Henry seems to feel better already, but Camille is not doing very well. Her fever is still climbing, and she is just burning up. She has also been vomiting, which is concerning.

I'll keep you posted on how they do. Right now, I'm munching on my comfort food (what is it about stress that makes you want to eat and not want to eat, all at the same time?), thanking God for my parents and Danny for their help yet again, loving the extra snuggles from my sweet boy (who does feel bad enough to slow down slightly), and hoping my little girl can catch a break sometime soon. There's bound to be one in her future. She deserves one more than anyone else in the world.

You asked for them...

2009-10-11T20:56:00.001-07:00

...new pictures, that is!

Yes, I realize that the paci is HUGE on her little face, but those are the ones she likes! What Camille likes, Camille gets, or suffer the consequences!

Sweet little girl in the hospital sporting her "nose hose" (NG tube). I know, I know--medical humor is the worst. But you have to have some laughter somewhere, right?

Our little cupcake. Isn't she delicious?

Jason forbid me to put this on the blog, so of course, I did anyway! He thought Camille looked like Jennifer Grey in Dirty Dancing in this picture. Hey, what's wrong with that? That's the look of my generation! This is actually a picture of Camille wearing her Cowboys onesie with some leg warmers. We really weren't aiming for the 80's look...

And I couldn't leave my sweet little boy out! Here he is in his pirate outfit (Jason hates it when I call his clothes "outfits" :). Henry is not a fan of me taking his picture these days--it requires way too much stillness for his taste--so that's why there is only one picture of him.

Camille has had a pretty good weekend, and so we are very thankful for that. She is running a fever of 101.5 tonight, so that is our big concern right now. We'll see how she is tomorrow. We've got some big appointments this week (follow-up GI, assessments for PT, OT and Speech, and ophthalmologist), so we'd appreciate your prayers for those as well. Thank you for your continued love and support!

Turn Your Eyes Upon Jesus

2009-10-08T20:31:00.000-07:00

In my attempt to make Camille's button feedings more enjoyable? comfortable? just darn bearable?, I bought a mobile to hang over her little bassinet in our bedroom where we do her feedings. I didn't have very high hopes for the mobile--it was pretty cheap--and although it hasn't done what I had hoped it would do--you know, make Camille smile and laugh and coo and clap in delight during her feedings--it has had an unexpected effect on me. It plays several songs, and one of them sounds like the beginning of the chorus to Turn Your Eyes Upon Jesus.

O soul, are you weary and troubled?
No light in the darkness you see?
There’s light for a look at the Savior,
And life more abundant and free!

Refrain:
Turn your eyes upon Jesus,
Look full in His wonderful face,
And the things of earth will grow strangely dim,
In the light of His glory and grace.

Through death into life everlasting
He passed, and we follow Him there;
O’er us sin no more hath dominion—
For more than conquerors we are!

His Word shall not fail you—He promised;
Believe Him, and all will be well:
Then go to a world that is dying,
His perfect salvation to tell!

When I hear that song on the mobile, I sing these words to myself, and I try, try, try to do just that. But I must admit, there are a lot of times when I want to turn more than my eyes upon Jesus. I want to throw all of my questions, all of my anger, all of my hurt at Him and just plain ask Him, "Why?" Isn't that so trite? Doesn't everyone want to ask God, "Why me?" But I have uttered those words over and over again, mainly whispered them desperately, often with tears running down my face. Why? Why? Why? Why is this happening to my baby, to my precious child? Why is this happening to my family? We have had such a difficult year already--why does it keep getting worse? Why, God, why?

These past few days have been particularly hard. In my last post, I had written that Camille seemed to be feeling better. On Monday, I had seriously thought we had turned a corner. Of course, I have thought this several times. Each time we change something, trying desperately to figure out what is wrong and how to make her more comfortable, things seem better for a day or two, and then they always seem to get worse after that. I don't know if it's just wishful thinking on our part that we keep thinking that this might be the time that we figured out what has been making her so miserable and fixed it so that she can feel better. I can't even count the number of times I have called my Mom to tell her that I think I have finally solved the problem, and Camille seems like she is doing much better.

Things this week have been the worst yet. I think it has been even harder this time because Camille had started smiling and was having some really happy moments. I kept telling myself, "See, it is so good that you went ahead and let them put in the feeding tube because look how much better she is doing!" Then, as they always do, things went back downhill and fast. Camille has been crying almost incessantly for the past few days. She has literally cried (and therefore not slept for more than 10-15 minutes at a time) since 7:00 p.m. Wednesday night. I am literally having to hold her down for her button feeds because she bucks like a wild bronco during them. She is also still refusing to take anything by mouth--she arches, chokes, gags, spits out, etc. I tried to give her a bottle today, and she acted like she didn't know what to do with it.

And then there's the news we got today. It should be good news, and I guess it is. Camille's chromosome test came back normal. She does not have a chromosome syndrome like the geneticist and neurologist had thought. This is good news, but also kind of scary, and a little frustrating. It's scary because if it's not chromosomal, it means that some other much worse genetic syndromes move to the top of the list. It's frustrating because it's just one more thing that makes Camille a complete mystery. It is so hard to hear over and over again the words that we have heard from countless doctors: "There is something wrong--she has something--we just don't know what." We were hoping that we would have our answer in the chromosome testing, and we don't. Again, that's good, but it also means more testing, more wondering, more googling (oh wait, I gave that up, right?).

So we continue to wait for answers, for relief.

Turn your eyes upon Jesus,
Look full in His wonderful face,
And the things of earth will grow strangely dim,
In the light of His glory and grace.

And we find peace in the knowledge that the ultimate relief, the ultimate rest, even the ultimate answer, lies in Him.

Cute as (and with) a button

2009-10-06T06:28:00.000-07:00

Well, we're home, but you probably already figured that out. I've been thoroughly chastised from not posting that on my blog, but after reading this post, I'm sure you'll fully understand why.

I left off before asking you to pray for two specific things for Camille. One was that her heart rate would stop dropping, and that she would stop having oxygen de-sats. Shortly after I wrote that last post, Camille's heart rate did in fact stop dropping as much as before, and she did not have anymore de-sats. Her heart rate was still dropping occasionally when we left the hospital, but not near as much as before. It remains a mystery as to why. Our GI was still concerned about it when we left, and our pediatrician was very concerned about it when we went in for an appointment yesterday. But, from a cardiology perspective, her heart structure looks great, and so we may never know why it was doing that. I think I'm okay with that--it is a little nerve-wracking to be home without the monitors, which means you are left to wonder if everything in her little body is working okay at any given moment. But I'm trusting it is, and so far, everything seems fine.

The other thing I asked for you to pray for was for Camille to gain weight. We went ahead and made the very difficult decision to put in a g-button (stomach tube, but I hate that term, so I won't be using it except here to explain what a button is). Although Camille can eat, she was apparently not eating enough, especially enough to play catch-up on her growth. Back in June, if they had asked me to put in a g-button, I would have said absolutely not. No tubes whatsoever. But now, we're okay with it. If it will help Camille grow, then we're for it. It required a minor surgery, which she had the day before we were discharged.

And so, we arrived home last Wednesday evening, Camille now sporting a little button, and our house now sporting some intimidating new medical equipment. Our bedroom decor now includes an IV pole and a feeding pump. I'm not seeing that it adds much style to the room yet, but maybe it'll get there.

The plan was to feed Camille by bottle during the day, just like we were doing before, and then pump her full of formula through her button for 10 hours continuously at night. So basically, we were supposed to only have to use the button at night for a continuous night feeding, and occasionally during the day if Camille did not finish a bottle. However, as she often does, our little princess had other plans. First, since we came home, she has decided that she does not want to take anything by mouth. Zilch, nada, NOTHING. She acts like her bottles are full of acid instead of formula. This means that not only do we get to do the continuous night feedings by button, we also get to do all of her day feedings by button as well, at least until she decides to take a bottle again. Second, Camille hates laying there for her button feeds. She squirms, wiggles, kicks, cries, etc.

It doesn't help that I have been fighting the feeding pump since it arrived in our home, and I can say without a doubt that the pump can claim full victory. I'm sure that if anyone peeked in our bedroom window during a feed, it would look like a 3-ring circus. There's me, trying to hold onto a tube that is flying around squirting formula everywhere, while at the same time trying to figure out what the rate of the flow should be, and wondering why in the heck the darn thing is angrily beeping at me. Then, inevitably, the tubing gets clogged, and while I am trying to get that fixed, stuff starts coming out of Camille's button and leaking onto everything. The whole time I am trying my hardest not to scream every cuss word in the book while my dog happily licks up all of the formula---the very expensive, we-really-don't-want-to-waste-a-drop-formula---off of the floor, and Camille lays wailing away. I feel sure she's not holding back on the cuss words as I am trying to, so it's probably better that I can't understand what she is saying yet. It's just not a pretty picture, but I'm sure it will get better, right? Right...

However, I can very happily say that every feeding pump mishap has been totally worth it because Camille has gained almost a whole pound in 11 days! I am overjoyed at that! We found out about this weight gain right when I was starting to have second thoughts about the button, not only because of the difficulty in figuring out how to work it all, but also because of all of my emotions surrounding it. We've known from the very beginning that Camille will likely have some level of special needs, and now we know that even more than ever after meeting with all of these various doctors, but there are some days when I can forget that. I can just look at her and think of her as a regular ol' baby. The button, however, is just this thing that is right there, staring me in the face, a constant reminder that Camille is not just a regular ol' baby. That's really hard.

On top of that, the button makes me feel like we were defeated in our fight to get Camille to eat. When she was first born, she had so much trouble learning to eat that the staff in the NICU warned us that she may never learn to eat at all. The moment they mentioned this, Jason and I became utterly determined to get that girl to eat. After a week of trying every feeding position and technique in the book, not to mention every bottle nipple on the market, we finally found what worked for Camille, and she began to eat. The staff that had evaluated her the previous week came back to watch her eat, and they were absolutely amazed. They literally called it a miracle that she improved her eating technique that much in that amount of time. We were so proud. And so, it is a little disheartening that we have had to go this route. The encouraging thing is that everyone fully believes that Camille will not have to have her button forever. It is just there to help her play catch-up for now, and then it can come out in the future.

So, despite my mixed emotions, I'm really okay with the button. An added bonus is that not only is Camille gaining weight with her button, but she is feeling much, much better now that her little tummy is staying very full (well, feeling much better when she is not hooked up to the dreaded feeding pump). She has started smiling all of the time now, and has even started "talking" to us. She also likes to "talk" to that pretty baby in the mirror too. She tells that baby in the mirror all sorts of stuff with this adorable grin on her face. I've begun to wonder about their conversations. I fear they may go something like this:

"You should see my Mommy battle my feeding pump. It's stinkin' hilarious! I've started refusing to take a bottle just so I can have more opportunities to witness the debacle!"

Wouldn't put it past her, folks. Our little girl is one of a kind, and we wouldn't trade her, button or no button.

The rest of the story so far...

2009-09-27T19:16:00.001-07:00

So I really didn't mean to leave you with such a cliffhanger. Really, I truly didn't. I was just typing away on last night's post, and all of the sudden, my brain literally stopped functioning. I promise you that you would not have wanted to read anything that I had written from that point on because it would have been completely incoherent. I guess I just hadn't realized how exhausted I was! Anyway, I will finish the rest of the story so far and relieve you of your anxious wondering. :)

Before I do, though, I have to tell you this little side story. I was down in the hospital cafeteria this morning getting breakfast for us, and this lady in front of me ordered a meal with hash browns. (Please bear with me--this story is not ultimately about hash browns). When they handed her meal to her, she told them that those were not the type of hash browns she wanted, and they then replied that those were the only type of hash browns they had. She literally had a meltdown about them not having the right type of hash browns right there in the hospital cafeteria, in front of tons of people. Seriously, it looked like a classic 2 year old tantrum. At first, I was thinking to myself, "Oh my gosh! Get over it. We're talking about hash browns here, lady! If you need some real problems to get upset about, come on up to our room, and I will give you some of ours!" But then, as I was telling my very wise Daddy my thoughts on this story, he said, "But maybe that's just it. She was all upset about hash browns because she is likely in the hospital with a sick child who she is very worried about, and little things like the wrong kind of hash browns just send her over the edge." I was very convicted when my Dad said this because I realized that he was likely very right. There are so many very sick children at Cooks right now--children who have cancer, children who have been in major accidents, children who have had dangerous and risky surgeries. I never dreamed that I would have a child in the hospital--I don't think anyone really does. And then it happens, and it seems like the whole world is turned upside down. The thing is, Camille will get to go home eventually, probably pretty soon. Some of these children won't. And that's heartbreaking. So I wanted to ask you to please pray for the families of those children who are at Cooks right now. Pray for strength, comfort and peace. Pray that God will surround them with the love and support that they need to get through this difficult time.

On to the rest of the story. So Camille did not have reflux. That was not what was making her heart rate drop, or feed poorly, or arch her back, or be excessively irritable. So then all of the docs did this mass exodus from the reflux bandwagon to the neurological bandwagon. Now they all thought that Camille must have something going on in her brain making her do all of those things. As you may recall from a previous post, our pediatrician was worried that Camille had something neurological going on that was making her so stiff and so irritable. So when we heard our Cooks doctors mention this, we were very nervous. Our GI then ordered an MRI of Camille's brain to check for neurological abnormalities. He thought that Camille might have a brain stem compression that was causing all of these things to go on. Yeah, I know--completely scary. He also ordered a new swallow study (we had one done in the NICU too that came back normal) to check to make sure that Camille could swallow fine, and was not aspirating milk into her lungs.

Right after we found this all out, we met with genetics. We were scheduled to meet with genetics in November (that was the soonest we could get in), but our GI team was so wonderful and managed to get us a meeting with a geneticist right then. We had chromosomal testing done in the NICU, and it ultimately came back normal, but with all that Camille had going on, her physical features and history, etc., it did also seem to everyone that she likely had some sort of genetic syndrome.

Now if you would have told me this when Camille was first born, I would have blubbered and sobbed and been hysterical. I was a mess when we were waiting for the first round of chromosome results. I had just wanted so badly for Camille to be completely fine and "normal". But now, after everything we have been through with her, we have come to accept that she is different, and there is something making her that way. And, here's the important part--that's okay. We're finally okay with that, and we accept that. What we can't accept anymore is not knowing. We just want to know so that we can move on, and begin to help Camille with whatever needs she has. As my very sweet and also very wise mother-in-law, Sharon, used to say, "It's the unknown that's hard. If you know what's going on, you can roll up your sleeves and deal with it." And that's where we are. So I was so excited to be meeting with a geneticist because I thought she would just walk in, look at Camille, and say, "I think she has __________."

Yeah, not-so-much. The geneticist met with us, discussed our family history, observed Camille, examined her features, and said that she also thought that Camille definitely had some type of genetic syndrome, but she didn't know which one. She said that she put her money on a chromosome syndrome, and that she thought we needed to have a more sensitive chromosome test done than the one we had done previously. There were also a few more tests for a few other syndromes that she wanted to run. The most scary of those was a progressive neurological syndrome that is associated with a very shortened lifespan. We are obviously especially hoping it is not that one.

The geneticist also agreed that we needed to get an MRI of Camille's brain done right away. She also wanted a bone scan (x-rays of all of Camille's bones) done because she thought her arms looked bowed. So, that afternoon, Camille had a long bone scan, an MRI, and a swallow study. She was a busy girl. She was not, however, a happy girl. She was not allowed to eat again all day that day until we made sure she was not aspirating, and so that, coupled with all of the tests, made her a bear of a baby. It was not a fun afternoon.

But ultimately, we got great results. Camille's swallow study came back normal. She can eat fine, and was not aspirating at all. What they did find is that her swallow is slightly delayed, basically meaning that she just swallows slowly. Apparently this is not uncommon so I'm not sure why the NICU did not catch this the first time around, but don't even get me started on that. When Camille swallows thin liquids, such as her formula, the delay causes there to be a residue that is left on her throat, and as her feeding goes on, that residue builds up until it starts gagging and choking her (which was likely causing the arching during the feeds, and her refusal to take very much after a certain point, things we had previously thought to be caused by reflux). The solution? Finally an easy one! Thicken her formula with this gel thickener stuff. The result so far? Much easier feedings, thank goodness! This doesn't solve the weight gain problem, but it helps Camille eat with much more ease. She still won't take quite as much as she needs to, but we are hoping that will slowly improve.

Camille's long bone scan also came back normal. They said that her head was only slightly undersized, which made me quite happy. The best news of all, though, is that the MRI of her brain came back normal as well. Jason and I were shocked. After everything we had heard, we were just sure that there was some sort of abnormality. I had given up hoping for normal--I was just hoping for minor! What does a normal result mean exactly? Well, first it means that there is no cerebral palsy! It also means that everything in Camille's brain, including the brain as a whole, is the right size, and that there is nothing missing from her brain. There was also no brain stem compression. All very good news!

We met with the neurologist who also put his money on a chromosome syndrome. He examined Camille and said that she was mildly stiff, but that he really thought stretching would help relieve that. He also said that he wanted us to have Camille examined by a pediatric opthamologist because he was concerned about her vision.

So what does all this mean? Well, it means that we have ruled out a lot of scary things! It also means that Camille does almost for sure have some sort of syndrome that will affect her growth and development in some way. We are anxiously awaiting those genetic test results, which should come back in 2-3 weeks. Whatever happens with those results will be okay. We are ready to face whatever comes. And, as one of the nurses who has been taking care of Camille said tonight, "I don't care what she has, chromosome syndrome or not. I think she is so darn cute!" We certainly do too!

The big issue now is getting Camille to gain weight, and figure out what is causing those heart rate drops and de-sats. Our GI is still very concerned about both. In fact, Camille has now lost weight, and so they had to put an NG tube (tube that goes down her nose and ends in her stomach) in tonight. They are going to pump her full of formula through the night for several nights, and then allow her to take her regular bottle feedings during the day, in hopes that she will start gaining again. As for the heart rate drops and de-sats, they remain a mystery, but our GI doc does not feel comfortable letting us go home until we know what is causing them.

So please pray for those things: weight gain and finding out about those heart rate drops and de-sats. We are so very appreciative of your love and support. Another thing my Daddy said recently, "When we finally get Camille home and healthy, we are going to have one big party." Oh yeah we are. And you're all invited!

Looking for Answers

2009-09-26T19:19:00.000-07:00

Well, we've been looking for some answers about what has been going on with Camille, and it looks like we are finally starting to get some. Not the way we wanted it to happen necessarily, seeing as Camille is now admitted at Cook Children's for several days as we try to figure her out. I'll try to update you as best as I can, but so much is going on that it may come out convoluted and confusing. You might already be used to that with us and our crazy life, though!

We (meaning Mom, Camille and I) went in for Camille's GI procedure on Wednesday morning. We were scheduled to have it at the Hurst location, and had to get there at 6:00 a.m. Camille had not been able to eat since midnight, and so she was slightly perturbed, but doing pretty well. Shortly after they started to get Camille ready for the procedure, the anesthesiologist came in and said that Camille was too young and too small to have the procedure done at the Hurst location, and instead she needed to have it done at the downtown location AND be observed overnight after the procedure. They then rescheduled us for that afternoon downtown. You might be wondering why in the world they originally scheduled us at the Hurst location knowing from Camille's history how small and young she is. This was a little frustrating, but everyone was very apologetic, and I was just glad they could get us in that afternoon. I was also preoccupied with worrying about Camille's weight gain. They had weighed her to get her prepped for the procedure, and she had gained nothing in 2 weeks. Her weight gain had never been that bad before, and I was really worried.

So we went over to the downtown location around lunch time, and endured a 2 hour wait in the waiting room before we even got to go back to get prepped. Mind you we were with a very unhappy baby who had still not gotten to eat ALL DAY. Camille then had the procedure done, came through everything fine, and they put us in a room for her to be observed overnight, since she was so young and small, and had just had to be put under anesthesia. That's when the real fun started.

About 10:00 that night, Camille's heart rate started dropping into the 50's and 60's over and over again. The heart rate for a baby her age should really be above 100, but anything below 80 is concerning. So, 50's and 60's were very concerning. Alarms were sounding, nurses were running in--it was quite unnerving. This was really puzzling to me because the whole time Camille was in the NICU, she only had one heart rate drop the entire time. Now she was having tons. Heart rate drops are a big deal in the NICU--if a baby has one, they have to stay at least seven days from that heart rate drop. So a baby might be completely ready to go home, maybe even getting into his or her carseat to go home, and have a heart rate drop, and then have to stay 7 more days. We always felt so lucky that we never had to deal with that issue with Camille. Now we were.

The nurses ended up calling our GI doc in the middle of the night that night, and he ordered a full cardiology work-up for in the morning. I have to admit that I was feeling quite salty the next morning. Okay, more like down-right spitting mad. I just kept thinking that someone--I didn't care who--needed to figure out what the heck was going on with my baby, and they needed to figure it out NOW. No more of this "Let's change her formula and we'll see you back in 2 weeks" junk. I was DONE with that. I had this big speech all prepared for the GI doc the next morning about how he needed to do something, but he beat me to the punch. He walked in and said, "I'm admitting Camille for at least 5-7 days so that we can run some tests and figure out what is going on with her." I could have kissed him at that point, but I hadn't had a shower in 48 hours, so I didn't.

So, they started with cardiology. Camille had an ultrasound of her heart in the NICU, and it was normal (meaning no structural abnormalities), and so they did not re-do that. They instead hooked her up to what's called a halter monitor, which would measure every heartbeat for 24 hours. The cardiologist came and met with us, and he said that he really thought Camille was having such severe reflux that her heart rate was dropping. Of course, that is why we were there in the first place--our GI doc thought Camille was starting to take in less and less formula each time because her reflux had gotten worse, to the point that it was severe. He also attributed her excessive crying and arching of her back to reflux as well. After the cardiologist left, I told Jason that Camille better have some crazy reflux going on, or we were in big trouble. Everyone was attributing all of her "symptoms" to that, and if it wasn't that, then we were back at square 1.

So we spent another night with heart rate drop after heart rate drop. Camille also added in a prolonged oxygen de-saturation (meaning not enough oxygen was in her blood), which turned her extremities blue, and sent a host of nurses and doctors into our room at 2:00 a.m. with oxygen masks and x-ray machines. They called it a Med-Alert. Our girl knows how to throw a middle-of-the-night party, that's for sure. The pediatric ICU doctor who was called in during all of this to check Camille out attributed this de-sat to--you guessed it--reflux.

Turns out, though, that Camille does NOT have reflux. Yes, you heard me right. The next morning, we got the results of her procedure, and they showed that at most, she has a very mild case of reflux. Certainly not enough to cause all this. You could literally see all of the doctors scratching their heads.

More tomorrow on the rest of the story so far. Just know that we have gotten really good news today, so much better than we expected.

Another Procedure

2009-09-22T12:23:00.001-07:00

First let me say a huge thank you for all of your kind comments, Facebook messages, emails, cards, phone calls, etc. regarding my last post. I don't know what we would do without so much support from so many friends and family. I know that people say that all the time--"I don't know what I would do without _________" but I truly mean it. I cannot imagine going through such a difficult time in our lives without people surrounding us and loving on us. You all are a huge blessing to us, and please know that your love and support, along with our faith, is getting us through this.

I just wanted to update you that it does seem that Camille is doing better with her Elecare, which is good. It does also appear, though, that her reflux has gotten worse, and so she will be having a procedure done at Cooks tomorrow (Wednesday). They have to put her under general anesthesia to do this procedure, which is a little scary to us, but we are trusting that she will be just fine. They are going to look for reflux, damage from reflux, infection, allergies, and take some biopsies of her digestive track. That's about all I know at this point. I will post tomorrow (or the next day--you know me!) on how things go and what they find.

Thanks again for your love, support and prayers.

Hard News

2009-09-15T10:16:00.000-07:00

I have been debating on whether or not to post anything about this or not because on one hand, I just want to pretend like it's not there, but on the other hand, I want you all, who have been so lovingly praying for us and caring for us, to know the latest, as difficult as it may be.

We took Camille into our pediatrician on Friday because she hadn't been eating well since Wednesday, the day we switched her formula. It could have been that she didn't like the new taste of the formula, but I really didn't think so because she has not seemed to mind any of the other new ones that we tried. I also felt like her eating had been getting progressively worse even before we switched to the Elecare, and on Friday, it was bad. I could only get her to eat around 2 ounces in 12 hours. So I first called the GI office, and they immediately wanted me to take Camille into our pediatrician's office to make sure she wasn't sick, dehydrated, etc.

Jason came along this time because I get so tired of having to take Camille alone and explaining everything by myself. By the time we made it back to the exam room, Camille was screaming her head off, which is not unusual, but our pedi had never seen her quite like that. He started examining her, and then kept asking about her irritability. I kept telling him that we were not there because she is irritable--we have gotten pretty used to that, and are hoping this new formula will help with some of that. We were there because she wasn't eating, but he didn't offer much on that, just that she would get used to the new formula and likely start eating better in a couple of days.

What he kept returning to was her irritability. So finally, Jason asked him, "If the irritability (screaming, arching her back, stiffening, etc.) is not related to GI issues, then what else could it be?" Our pediatrician got this sympathetic look on his face and said that he wasn't going to go there, but since Jason asked, he would tell us his new concerns. He said that when he had examined Camille that day, he noticed that she was really stiff, and had some hypertonia (increased muscle tone). That is almost always only associated with cerebral palsy. Plus, he added, that a lot of CP babies and children are hyper-irritable, and so those two things are now making him concerned about her having CP.

I have to tell you that I felt like the bottom of the floor fell out at the moment, and I felt like I was falling into a very deep hole. I couldn't believe this. I had noticed her stiffness back in the NICU, and had asked our pediatrician on 2 separate occasions at 2 separate appointments if he thought she was too stiff. He had told me about the association with stiffness and CP, but then when he examined her, he said that he did not think she was too stiff, and that I did not need to be worried about CP at this time. But of course, I still worried. I looked it up on the Internet and worried some more. I even called the Nurse Practitioner who cared for Camille in the NICU, and asked her if she thought Camille could have CP, and she said that she did not think that Camille did. Our pediatrician said on Friday that he had just noticed Camille's stiffness during this appointment, and coupled with her other symptoms, he was now concerned. He made it clear that he wasn't diagnosing her with anything, just noting this new concern.

So I then said something about the stiffness and a genetic syndrome, and he replied, "Well, she 100% has some sort of genetic syndrome. I now have no doubt about that." Excuse me? What? I sunk a little deeper into that hole. What happened to "she may have something genetic, and may not?" What happened to "as long as her head grows, she may likely be just fine?" He said that with her growth failure before and after birth, along with her head size, then he now thinks it absolutely has to be something genetic.

And then came the million dollar question. With my head spinning from all of this, I said, "So she could have cerebral palsy AND a genetic syndrome?" He simply replied, "Yes, she could."

This was just absolutely, incredibly, overwhelmingly unbelievable to me. Cerebral palsy affects motor capability, but doesn't necessarily affect mental capability. Most genetic syndromes, at least those that are associated with things that Camille has, affect mental capability, but not necessarily motor capability. But with CP and a genetic syndrome, she could have diminished capability in both areas.

I went on to ask if the stiffness could be related to something else, like a genetic condition, not necessarily CP. I should have asked if it could be related to low amniotic fluid levels in pregnancy because I have actually heard that, but I didn't think to ask about that at the time. He basically said that hypertonia is almost always "brain related" meaning that if it is present, there is usually something abnormal going on in the brain.

I actually handled myself pretty well in the office. Then I got into the car and lost it. It was pouring down rain, and so I was just driving around in the rain, crying, and thinking about how truly unbelievable this was. How truly unfair this was. How truly heartbreaking this was.

All of these random, crazy, depressing thoughts just kept bombarding me. That I'll never get to work on my Ph.D. as I had hoped. That Henry may never get to run around in the backyard with his little sister. That our lives will be an endless parade of appointments and procedures and medications and equipment.

But then I realized that once again, I was losing Camille in all of this. I was thinking about how all of this would affect me, and Jason, and Henry, and my mom and dad, and not thinking about Camille. Not thinking the thought that Jason and I have tried to make our central thought in all of this: She is a blessing, and we love her. No matter what. She is who God made her to be, and whatever that is, it will be good. No matter what. Cerebral palsy doesn't change that. The rarest, most horrific sounding genetic syndrome doesn't change that. Nothing changes that.

Of course I am hoping and praying that Camille does not have CP. I am hoping and praying that the geneticist doesn't tell us that she has something even worse than CP. It has been made quite clear now that she is going to have some level of special needs--we just don't know exactly what those are yet. And so, all I can do now is continue to pray and to hope. And I ask that you do the same, as you have been all along.

GI Appointment

2009-09-10T06:42:00.000-07:00

Sorry about the delay in posting. I hope you know by now that even though I always have the fullest, most honorable intentions in saying I will post at a certain time (or call at a certain time--S.B., K.H., M.B., T.H.--you guys are probably nodding in agreement right now), I am not always able to follow through with that. I think it may have something to do with 2 high maintenance children and an equally high maintenance dog, but you know how that goes--excuses, excuses. Regardless, I had hoped to post last night and just plain didn't get to.

The appointment with the GI yesterday went well. I don't know what I was expecting, but on the way up to Fort Worth, I started feeling incredibly sick about what he might say. I guess I thought he was going to want to put Camille back in the hospital again, and I just couldn't take that. Well, I guess I could, but it would be really hard. Jason and I have learned through all of this that saying we can't handle something is really a false statement--we can handle anything if we have to. That's what we keep telling each other--that whatever happens with Camille, we can handle it simply because we have to. Anyway, the GI doctor was very nice and very thorough. He started off by explaining what we already knew--that Camille is way under weight for her age and height, and has not been gaining weight at a normal rate. Her weight is still way off the growth charts (meaning, not even on a percentile, even at her adjusted age) and her height is just touching the 5th percentile, if you use her adjusted age. If you use her "actual" age, then she is way off the growth charts--not even on a percentile--for both height and weight. He then went on to say that even with all of that, what is most concerning to him is that her weight is way under what it should be for her height.

So, after hearing all of our descriptions of what has been going on with Camille, everything we have tried from all of the different types of formulas to all of the different types of reflux meds, he said that he wanted to try this last kind of formula first, and see if that helps with all of that (weight gain, poor sleep, fussiness, etc.). The formula he prescribed, ElaCare, is completely hypoallergenic (meaning she cannot be allergic to it), and is the most broken down formula there is. He said that most of the babies that he sees that are having trouble like this either have an allergy to the formula, or are unable to break down the proteins in the formula, or both. This formula would take care of both. But, you might say, we already tried the broken down formula and it didn't help--in fact, it seemed to make things worse! Yes, good thinking! I said the same thing! He said that the Alimentum formula that we tried was broken down, but it was broken down to more like basketball size proteins, and this one is broken down to more like golf ball size proteins. (This doc had a lot of good analogies, by the way. I appreciated that.). So, he wants us to use this formula, mixed at the regular 20 calories (so that we don't have to wonder if the concentration is bothering her too), and then come back in 4 weeks. If her weight gain isn't much better, then he wants to start looking for other things (i.e. CF, etc.). He said that most of the babies he sees do respond to this, and so if we can fix things with this, then we are saving a bunch of time and money not running tests on all of those other things. If we can't fix it with this, then we have to do the other tests.

In case you are wondering, and I'm sure that any males that might happen to read this blog are, the ElaCare formula--yeah--liquid gold. For a case of it, meaning 6 cans, that'll run ya about 200 buckaroos, plus shipping. You should have seen Jason's and my dad's eyes pop out of their heads when they saw that online. Oh yeah, did I mention that you can't buy it in stores, but can only order it online? It's a good thing Camille is so super cute!

We also have to collect Camille's urine today because the GI wants to test that as well. Not sure what he is looking for there, but what I can tell you is that (a) it is not easy to collect a baby's urine, and (b) it is not fun to collect a baby's urine. You might be wondering how one would go about doing this. Hmmm, okay, there's this bag, and you are supposed to somehow attach it to your child, and.....well, let's just say that our first attempt did not go well. Jason actually told me to go look up on the Internet how to do it better because the nurses instructions left a lot to be desired.

The most discouraging part of the appointment for me was that our GI doctor mentioned that it did appear that Camille might have some physical features that would indicate a genetic syndrome. Even though it was slowly starting to dawn on me that this was more than likely true, and even though we were already going to be meeting with a geneticist in November because we knew this might be true, it was still hard to hear yet another doctor mention it. I guess we just have still been hoping that somehow in all of this, she can still be "normal".

So, if you wouldn't mind, you can pray for the following:

1. That Camille would eat her new formula well (so far, she has mainly refused it and has eaten very little. I think the poor girl is so tired of all these switcheroos!);

2. That this new formula would help her slow weight gain and other issues;

3. That we will be able to actually collect her urine for her urine sample without too many mishaps :) ;

4. That Jason and I will be at peace with whatever comes in the future for our sweet girl.

Things I have learned this past week...

2009-09-08T11:06:00.000-07:00

1. A 3 month old can go 12 hours and not sleep a bit. Not even for a minute. Not even for a second. Yes, I promise it's true because I have experienced this not once, but twice, in the past week.

2. Blue Bell's Grooms Cake ice cream is soooooo good. Especially if you eat it for breakfast. The morning that you are supposed to be starting your new post-pregnancy diet. After being up all night. Directly out of the carton. With a fork. Because there are no clean spoons in the house. And there haven't been for several days.

3. It's possible for a 2 year old to try to push his little sister out of her swing, poke her with a screwdriver that his daddy set down for a millisecond, and pull down the wallpaper border in his room all in one day. Er, one morning. Okay, one hour. Yeah, more like 10 minutes.

4. There is nothing more precious than two peanuts in pajamas. Note the evidence directly below.

5. God is faithful. He gives strength to the weary, hope to the hopeless, grace to those who are down-and-out and truly need it, just like me.

Tomorrow we will see the GI in Fort Worth. I'll post tomorrow night on how things go. Thank you so much for your prayers.

Latest on Camille

2009-08-31T21:18:00.000-07:00

Henry went in for his 2 year old check-up today, and took his flu mist up the nose, and his shot on the leg like a champ. The waiting for all that, not-so-much like a champ. He is so not big on waiting. Wonder where he gets that from? Anyway, the most exciting part of that visit was that his height right now indicates that he will be around 6 feet tall when he reaches his full height. Apparently, if you double a boy's height at age 2, that is a very good indicator for how tall he will be full-grown. This apparently does not work with girls--not sure why, but if you want me to Google it, I can. You might be wondering how in the world he would get to be 6 feet tall with parents like us. Yup, us too. Jason doesn't care about the hows or whys of this, though. He was just going on and on about all of the different sports positions Henry could play at 6 feet tall. The first thing he said when I told him was, "That's a high school point guard size! Awesome!"

While I was there at Henry's visit, I told our pediatrician about Camille's continued poor weight gain. I think he actually said something first like, "So how's Camille? Is she getting any rolls yet?" Um, no. I couldn't tell if he was joking or not, but I hope he was, because if not, I might start Googling his med school education background further. My sweet baby girl is never going to have rolls. We've already established this. But anyway, when I told him that our scale indicated that she had only gained 5 ounces in 13 days, he said to bring her in to weigh her that day, and that he wanted to go ahead and send her to Cooks Childrens in Fort Worth for a GI evaluation with a pediatric gastroenterologist. When I brought her up to be weighed, his scale indicated that she had gained 7 ounces in 13 days, which he said was not terrible, but not great. (As an aside, I have decided that I like his scale much better than ours because she always weighs more on it!). Anyway, he told me again that a lot of babies who are born early and/or small gain 2 or 3 ounces once they leave the NICU, as their bodies are trying to catch up on growth. "Normal" babies gain 1 ounce a day. Camille, on high calorie formula, is gaining around 1/2 an ounce a day. Since this is not a problem with her actual eating anymore (most days, she is eating 2 to 3 ounces at a time, which is a large amount for her body size), we now need to look into other causes. So next Wednesday, September 9, is the big day. We are considering seeing a pediatric geneticist, also at Cooks, on that day as well, if possible, to see if any genetic syndromes can be pinpointed. I don't think we want to do anymore genetic testing right now, but I do think we are ready to have a geneticist evaluate Camille.

It hit me today pretty hard that as much as we would like it to be, it doesn't appear that things are going to be "normal", and certainly not "easy", with Camille, at least not in the near future. That is kind of a hard pill to swallow since I had convinced myself that once we had escaped the NICU, everything would be better. Please keep praying for us. Pray for peace, joy, faith, and of course, good news next Wednesday.

Ridiculous

2009-08-30T18:18:00.000-07:00

I know that once again, it's been a while. I guess you could say it's been a ridiculously long while. But that's not why this post is titled "Ridiculous".

Henry's 2nd birthday was today, and his wagon-themed birthday party at the children's museum was yesterday. I will do a whole post on that sometime soon because it was such a special weekend, which is fitting because Henry is such a special little boy! I love him to pieces! In fact, it's ridiculous how much I love him! (But again, not why this post is titled--you got it--"Ridiculous").

And of course, I love my little jellybean ridiculously too. Her weight gain has stalled out yet again (4 ounces in 12 days), and so we'll see what the doctor says this week. I take Henry in for his 2 year check-up tomorrow, and so I should know more then about what is going to happen with Camille.

For now, we wait, and dress up in ridiculously frilly outfits and even more ridiculously silly bows, the reason for the title of this post. Well, at least Camille will. I have yet to sink to the ridiculously low level of doing matching mother/daughter outfits and bows.

Oh, and don't let the bows distract you from seeing--yes, it's really true--Camille taking a paci! I guess my determination just outlasted hers, because she finally gave in this weekend, and is much happier, even happier than with the pinky! In fact, she now loves her paci so much, it calms her instantly, and helps her put herself to sleep!

Warning: what you will see below is quite ridiculous. It will leave no question as to the title of this post. I know this already, and don't need to be told. Believe me, my husband has already taken care of that sufficiently!

The last one says it all. We had a bow malfunction with an already over-the-top ridiculous bow. Can it get anymore ridiculous (some might say embarrassing) than that? But isn't she a doll? And I guess you could say she is a ridiculously good sport to put up with her Mama's dress up sessions.

Now that I have used the word ridiculous so much so that I don't know how to spell it anymore, I will end this post. Keep us in your prayers!

Today's Eye Candy

2009-08-21T17:10:00.000-07:00

I have decided that with all of the precious outfits and bows that Camille has, taking a picture of her everyday is now a must. We have yet to get any really good pictures of Henry holding Camille, but the one below is priceless.

A*D*O*R*A*B*L*E

"What? I wanted to hold her, and she started crying, so I stuck my finger in her mouth! You guys do it all the time, so I thought I would try it!"

As I said before, priceless.

Latest Appointment

2009-08-19T20:13:00.001-07:00

Camille had her doctor's appointment regarding her weight-gain-stall today instead of yesterday. I took her in yesterday because that was when our appointment was supposed to be, but our pediatrician had been out of town, and his returning flight got cancelled, so he was not there yesterday. Can you imagine? The nerve! If I were paranoid, I would think he was avoiding us. Jason thinks he was at the PGA tournament. That just made it all the worse. :)

All jokes aside, our pediatrician's office was great about rescheduling us for this afternoon. Camille was weighed again, and she has only gained 5 ounces in 15 days. Our pediatrician's exact words were my exact words on my last post regarding this: "Not good." Since we did switch to the new formula right at the time she stopped gaining as well, that is what we are going to assume made the difference, and so she is going back to the formula we were using before. Since the new formula had not helped make the colic/reflux any better anyway, that's really no big deal to us. Our pediatrician seemed a little doubtful that it could be this new formula causing this since it hasn't caused this in other children, but since it is really broken down, it does go through the body more quickly than others, and so it could be that it is going through Camille so quickly that she is not having time to absorb the calories/nutrients well. That's what we are going to hope the problem is and not something else, like a malabsorbtion disorder. So, we switch back and bring her in again in 2 weeks. If she has still not gained well, we have to start looking at other issues and running other tests. He has been wanting to check her blood work again anyway, so he mentioned that as where he would start if things didn't get better by then.

He thought everything else looked great--I, of course, had a whole new list of worries that I wanted to ask him about since the last time we were there (little things like her joints popping all the time, etc.), and he said that they were all "normal". The hardest part about all of this so far for both me and Jason is that we now feel like we have no clue as to what "normal" is. If any of these things would have happened with Henry, then we would have just dismissed them (well, I probably wouldn't have, but a normal, non-psycho-worrying, non-super-paranoid mom would have), but with Camille, we worry that it is some sign to some awful problem/disorder/syndrome, etc. It's not a fun way to live, and definitely a joy-stealer. We are working on overcoming that, but it's hard.

I just had to share these pictures of my little ones today. I bought an Ergo carrier because I wanted to have something to carry Camille around in while I played with (or chased around) Henry. I tried a sling, but it just didn't work very well. So far, though, the Ergo has been great. Today, while Camille was napping, Henry decided he wanted to ride in it. He thought it was a blast, and I LOVED getting some extra snuggles (we call them "niggles" at our house) from my little boy. Enjoy the pictures!

Henry riding in Camille'e Ergo Carrier. Luckily, he did not mind that it is pink. Please ignore my appearance. Who has time to take a shower before 3:00 p.m. with a toddler and a newborn? Certainly not me! And I promise that Henry really did like the carrier. He just wanted to take the picture himself, and wasn't too pleased when I didn't comply.

Oh the joys of party favor glasses from HEB! Jason calls these Henry's Bono glasses.

My little princess in a 3-month size dress! Yes, I know it swallows her, but so many of her cute summer clothes (that I bought her before she was born) are 3-month size, and I am dying for her to wear them!

Her big brother was "helping" with this particular photo shoot. This is Camille wondering what in the heck he is doing. We wonder that on a daily basis, baby girl. Get used to it. :)

I'm still here (maybe not still sane, but here!)

2009-08-16T18:57:00.000-07:00

The title of this post says it all. I know it has been way too long since my last post, but just picture this scene: First, there's the husband/Daddy trying to finish one job and start another one; then there's the very busy almost-two-year old who isn't still for a single second during the day; and, there's a cranky, although cute, little Miss Priss two-month-old who has now decided that sleep is WAY overrated and therefore naps should be limited to absolutely no more than 5 minutes at a time; and of course, finally, there's the frazzled, stressed, worrying Mommy who feels like she cannot keep up with all of this. Or actually, any of this. Yes, be glad you are not us right now. I'm sure if there were a video of our day to day lives at this time, it would look like a train wreck. But, we're still going. And most days, we're still laughing. Mostly laughing at ourselves, but that's okay. There is still joy in all of the chaos, and that's a good thing.

Really, I have sat down to write a new post many times since the last one, and have gotten interrupted every single time. When I saw my aunt Jena last week, Camille was sucking on my pinky finger because as you know, she won't take a paci, but LOVES sucking on Mama's pinky, just like her big brother did when he was her age. Must be genetic, or something. I am now the Internet expert on genetics, you know. Anyway, Jena said that now she knows that when I have not been blogging, it's probably because I am sitting around with my finger in Camille's mouth. That's about right. So you can picture that when you haven't heard from me in a while. Well, it'd probably be a little more accurate to picture me with my finger in Camille's mouth while chasing around Henry, trying to cook dinner (yeah, I'm trying to cook more now too. Stupid, stupid woman!), and trying to make sure our dog isn't doing anything she shouldn't be doing. Did I mention that I have a naughty dog too?

All that to say, we really are doing okay. As far as an update on Camille, it doesn't seem like the new formula (the very broken down protein-based one) is helping too much with the colic/reflux. And, worse than that, it has appeared to really slow down her weight gain. She has only gained about 5 ounces in the past 14 days. Not good. And so, we are going back into the doctor on Tuesday to see what the new game plan is. I know he'll be so happy to see us. After all, it has been a whole 2 weeks.

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On a positive, fun note, Henry has been doing great! He was not feeling good about a week ago--he was really pale, had a low-grade fever, and was just not acting like himself--you know, he was actually sitting still for more than 5 seconds at a time. I was convinced he had some horrible disease, but he is feeling much better now, and is completely back to his old self! He has really gotten to be so much fun these past few months. He is such a chatterbox, and you never know what is going to come out of his mouth! He amazes me everyday at what he says and knows. He has started talking in full sentences, and loves to give you a running commentary on everything he is doing. "I'm going to build a tower, Mommy. I want to talk to Nani, Mommy. I'm going to read a book, Mommy. I peed in the water, Mommy." :) Funny Henry story that I just have to share: our toilet flooded our guest bathroom last week (yes, the Whitts do have incredibly bad luck, and yes we are completely aware of it, and no we do not know what we did to cause it). I had to call the plumber because we couldn't figure out what the problem was. Before the plumber came out, I told Henry that there was someone coming to fix the potty. Later, when the plumber had gotten there, Henry started saying, "Gentleman here to fix the potty?" At first, I could not figure out what in the heck he was saying. Then I realized he was saying "gentleman", but then I couldn't figure out where in the heck he had gotten that. We don't really use that word in our family--we are so not that polite, I guess--but he was saying "gentleman" plain as day. The plumber got a big kick out of that! Since then, he has told everyone that the "gentleman" came out to fix the potty. I'm still trying to figure out how my little "gentleman" came up with that!

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I know that on my last post, I promised that I would tell all of my good NICU stories. And for some reason, I just can't. I don't know what the deal is. I guess I just sometimes don't even want to think about the NICU. I want to pretend that it all just didn't happen. Jason called the NICU "a little slice of hell on earth", and it truly was. While we were there, we saw a few people come back with their babies who had been in the NICU to visit the doctors and nurses who had cared for them. I would look at those people and swear that would never be us--once we left the NICU, we were never coming back. It's not that we weren't grateful for the care that Camille got there. It's just that I have never been in a more stressful, nerve-wracking, negative place in my life. Someday I will do a post on the stories. I want to tell Camille's full story, and that unfortunately includes the NICU. But for now, I still shudder way too much when I think about it.

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I promise to not go so long in between posts again, if I can help it. Now if you'll buy that, I've got some ocean front property in Waco, Texas and a two-month-old who never cries and sleeps wonderfully.

Oh wait.

So far, so good

2009-08-04T19:23:00.000-07:00

Camille had her 2 Month Check-Up today. She is technically only 1 month, and so everything was adjusted for that, but we will stay on the typical 2 month, 4 month, 6 month, etc. check-up schedule. The two best pieces of news first: she is now 6 pounds exactly (which means she gained 17 ounces since our last weight check 17 days ago), and her head has grown!

Funny thing (or not so funny, depending how you look at it) about the head measurement (I choose to find it funny because I have found that if I am going to make it through all of this, I am going to have to laugh...A LOT!). The nurse took Camille's measurements, and she thought her head had grown 3 centimeters in the past month. I was so excited about that! I know that doesn't sound like a lot, but it is! So, our pediatrician walks in, and asks about her weight. I told him about her hitting the 6 pound mark, and then I told him about her head too, obviously very excited. He gave me this really doubtful look, and said that he didn't think it could have grown that much in that amount of time. I wanted to say to him, "Look, buddy. I know you are a doctor and all, but let me tell you something. I have done more research on head circumference than anyone on the planet. I am an expert on the subject. In fact, I could probably write a book on it. I would even bet you that I could draw the head circumference growth chart curves for you right now with my eyes closed. YES IT CAN GROW THAT MUCH, AND IT DID!" But instead I said, trying not to grit my teeth, "At our discharge from the NICU, they said it could grow up to a centimeter and a half a week." He then said that yes it could, but he didn't think hers did, and that he would re-measure. I swear if he had reached out and given me a sympathetic pat on the arm right then, I would have decked him. So he remeasured, pulling that stupid measurement thing so tight across Camille's head that I seriously thought he would leave a red mark. And sure enough, he said, "Oh no, see I'm getting that it grew more like 2 centimeters." Really? Couldn't you have just let me think 3 instead of 2? Geez.

But, regardless, he was pleased with the 2 centimeters growth because she grew right on her curve, right at the normal rate of growth. Apparently (and this was all explained to us again today), although it is concerning that Camille's head was small, if it grows on her growth curve, then there is a great chance that she will be fine. A much better predictor of how she will do is "growth along a curve" rather than her head size at birth. That is what everyone across the board has said. If her head stops growing, or drops off the growth curve, then that is concerning. So... so far, so good. Our pediatrician reiterated again today that if her head continues to grow on track like this, then she could be, in his words, "Just as smart as can be." We just have to wait and see if that happens. He said, too, that her muscle tone looked great; she was putting on weight right on track now; and she was doing everything that a 1 month old should be doing. All very good signs. Again, so far, so good.

Other things that happened at the visit (hey, you asked for updates! Hope this doesn't bore you to tears!):

-We changed her formula to a special "colic" formula that is already majorly broken down so that her stomach has less to do and will empty out quicker. He said that all babies struggle somewhat with their immature digestive systems, but that premature and low birthweight babies often do even more. He also said that since she struggled with gas/colic and reflux both, then this should help both of those, since it is easier to digest (for the gas/colic), and empties out of the stomach quicker (so there is less to reflux back up). We are still mixing it 24 calorie, instead of the regular 20 calorie.

-He was concerned about her skin being pale, and therefore, that she was still anemic. She was severely anemic in the NICU, and they had thought they were going to have to do a blood transfusion, which is not uncommon in really preemie babies, but is uncommon in babies born at Camille's age. Basically, even though she was premature, she should not have been that anemic. Our pedi is going to check her blood counts at our next appointment to see how she is doing there. In the meantime, I will try and not google what disastrous things it could mean if she is in fact still anemic.

-She had her first shots today. And I say first because they really were her first. Another botch on the NICU's part. For some reason, they "forgot" to give Camille her shots that all newborns have before leaving the hospital. And that reminds me that I was going to tell all of my fun NICU stories on a post, and forgot. So, I will do that on my next post. Again, hopefully it won't bore you to tears, but I don't think it will. It was like a bad soap opera in a lot of ways. Or a bad Lifetime movie. That's probably a better descriptor.

So, we went home feeling pretty positive. You just can't beat growth in all areas.

So far, so good. I'll just keep repeating that to myself.

False Alarm

2009-07-27T18:53:00.001-07:00

It has now been determined that Camille does not need to have an Upper GI Series! She apparently had a similar test in the NICU, and so our pediatrician's partner thinks that would have probably caught anything he would have been looking for in the Upper GI test. Camille has had a VERY hard day--she has been writhing, arching, and screaming in pain all day and has only been able to sleep for about 30 minutes all day. We can hear her reflux rattling around in her throat and chest, and you can hear her stomach churning across the room, so we know she is in pain! Our pediatrician's partner gave us some new things to try tonight, and so far, so good. Camille is asleep for the first time today on our bed. I'm sitting here right beside her watching The Bachelorette finale. I was hoping to corrupt her with this guilty pleasure early, but she was apparently not interested at all, and zonked out. Her Daddy would be so proud, as he absolutely hates that show! I must admit that a big reason that I watch it is to see how many eye rolls I can get out of him during the two hours it's on. His comments under his breath are pretty funny too. Anyway, keep praying for us. Pray that Camille feels better and that she will continue to grow and develop well! You can pray specifically that she will start smiling soon. I am kind of worried that she hasn't really smiled yet--a couple of maybes, and "Was that one? I think it was!"--but maybe once she starts feeling better, she's give us some definitelys!

Another Test

2009-07-27T14:00:00.000-07:00

We just found out that Camille is going to have an upper GI series done sometime this week. Our pediatrician is out of town for the week (think I could manage to track him down on his cruise? :) but his partner is concerned about the severity of Camille's reflux (what we think is causing all of the groaning, grunting, arching, fussing, etc.). She has been taking Prevacid since her days in the NICU, and he doesn't want to re-fill her prescription until we find out if what is going on is more serious than reflux.

So please pray for this test, for Camille's pain level (especially since we are apparently stopping the Prevacid until further notice), and for a tired, worried, weary-of-more-tests Mama and Daddy. Ugh..I am just terrified that they will find something else wrong.

Thanks for listening to me in my somewhat discouraged (okay, a lot more discouraged than I have been even writing here) state these past few days. I'll post updates when I know more.

One of those days

2009-07-26T20:15:00.000-07:00

Quick Camille Update first, since I've spent the past few posts blabbing about all of my feelings lately, and plan to do that again on this post. :) Camille is still gaining well. She is now up to 5 pounds 7 ounces. Three more ounces, and she will be 2 pounds more than her birth weight! We are hoping she will be at least 6 pounds by the time we go to her 2 month check-up on August 4. Technically, she will only be 1 month old at her 2 month check-up, which I keep feeling the need to remind myself and everyone else so that it won't sound so bad that she will likely only be 6 pounds then. She continues to eat well most days. I have figured out that if she isn't hungry and doesn't want to eat, it doesn't do any good to try to push her to do so. She has learned to push the bottle out of her mouth, and spit out the milk if she doesn't want it. But if she is hungry, she will gulp the whole thing right down within minutes. It seriously makes me wonder if we spent 3 unnecessary weeks in the NICU because we "couldn't get her to eat", when really, she can eat great when she wants to. Girl just hates a schedule is all. She wants to eat when she wants to eat, and don't we all? She is still struggling with gas/colic/reflux? in the evenings, and sometimes she just grunts and groans all night long like she is in pain. Not sure exactly what that is, but it will be on the list of the gazillion questions I have for our pediatrician at her 2 month appointment. I feel like our pedi is wishing like crazy that this nutty, worrier of a mama never found him. I picture us having the What About Bob? sort of doctor/patient relationship. :)

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Camille enjoyed her first trip up to visit the family in Fort Worth/Arlington yesterday! She hates her car seat, and the car, and so she screamed the entire 1 hour 45 minute drive up there, which was super pleasant for mom, dad and big brother. Henry has been so adorable about Camille ever since she came home. He wants to love on her, and help take care of her, and he is always so concerned about where she is and what she is doing. He says things like, "It's okay, Camille. Don't cry, Camille" when she is crying, and every time he walks into a room with her in it, he says, "Hi Camille!" like it is the most exciting thing in the world to see her, even if he just saw her in a different room 5 minutes before. And he sings to her too! Now, if you have never witnessed a 2 year old little boy singing to his baby sister, you are missing out on one of the most precious things there is. I will try to post a video at some point.

Now, all this to say, I told Jason toward the end of the drive up to DFW yesterday that I thought the "bloom was off the rose" for Henry in regard to Camille. He was looking at her like she was from outer space as she screamed her little head off the.entire.way.there! I was afraid he was going to hurl one of his toys at her! What he doesn't recall, however, is that he did the exact same thing on a lot of our drives to the metroplex when he was a baby. How in the world did I get 2 babies who don't like the car and who won't take a paci? So far, I have not gotten my easy, low-maintenance baby. That was what Camille was supposed to be since Henry was a tad high-maintenance. But she managed to beat him out ten-fold! Truly proof that life is not fair, but I wouldn't trade the cuties I have. Well, except maybe on long car rides.

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Today has been one of those days for me. One of those days where I have let the "What If's" and the "Why Me's" overtake me. One of those days where I have wondered and worried and speculated and questioned. One of those days where I have felt overwhelmed with the possibilities. One of those days where I have thought over and over again, "I.can't.do.this! I can't, I can't, I can't." And so tonight, I ask that in addition to praying for Camille, pray for me. Pray simply for peace.

I was reminded by a friend on Facebook the other day (I am unashamedly addicted to FB) of a passage that has always brought me peace in the past. She sent The Message translation, which is now my favorite version of this scripture.

But now, God's Message, the God who made you in the first place, Jacob,
the One who got you started, Israel:
"Don't be afraid, I've redeemed you.
I've called your name. You're mine.
When you're in over your head, I'll be there with you.
When you're in rough waters, you will not go down.
When you're between a rock and a hard place,
it won't be a dead end—
Because I am God, your personal God,
The Holy of Israel, your Savior.

God is faithful. He has not left me. There is no need to be afraid.

Peace to you all.

Hope

2009-07-23T19:34:00.000-07:00

Jason and I read an article today about people who are now "un-doing" their baptisms by holding a "de-baptism" ceremony. No seriously. I'm not joking. It gets better. The ceremony consists of a "priest" using a hair dryer to dry the person being "de-baptized", and then this person receives a certificate stating that he/she is officially "un-baptized". Again, not joking. You can read the article on Baptist Today if you want. Apparently, some people who are now atheists were baptized at some point when they were younger, and now want to totally undo that. They are even sending their "de-baptism" certificates to their former churches, and asking to be completely removed from the "baptized list". This "de-baptism" movement is apparently really picking up speed--it's becoming quite popular on high school and college campuses. Wow.

I truly do not feel judgement, mockery, or disdain for those who are "de-baptizing". I'm sure some Christians might feel those things towards those who are doing this--I honestly just feel overwhelmed with sadness for them. I cannot imagine going through these past 2 months without my faith in Christ. I have said to Jason over and over, "What do people who are not believers do when they are confronted with these sorts of circumstances?" I honestly don't know the answer to that question.

I told a friend the other day that I realized several days after Camille was born that nothing could "fix" this situation. Most situations are fixable. But I think part of my despair in this situation is that I could do nothing; Jason could do nothing; my parents could do nothing; the doctors could do nothing to "fix" this. There wasn't enough money in the world that would "fix" this. There wasn't some VIP who I could call up who could "fix" this. The only One who could "fix" this situation was God.

I don't say that flippantly. I do completely and totally hold out hope that God can and will completely "fix" this situation the way I so desperately want it to be fixed, and give us the miracle we are praying for everyday. And I am going to continue to hope for that because I know that my God is a healer, and He works miracles everyday. I truly do believe that. And I ask that those of you who are reading this will continue to hope for that as well. But even if God does not "fix" this situation in that way, I know He will redeem it. In the end, it will be good.

We have seen this already in our lives recently. As most of you know, Jason has been applying for a full-time academic teaching job at various universities for the past 2 years. He has gotten close to being hired for several positions, but in the end, none have worked out for various reasons. We have often really questioned God in this, and wondered why all of these doors were closing. Actually, we often felt like the doors were getting slammed in our faces. But, we also held onto our faith that God had not failed us; He had not left us; He had not forgotten about us. Some days we had to convince ourselves of that a little more than others. But it was certainly true. This past week, Jason was hired to be the Associate Director of the Institute for Faith and Learning at Baylor. This position is such a great fit in many ways. It is a nice combination of the things that Jason is interested in and good at--administration, academics, ministry. It also allows us to stay in Waco for a while so that we can remain in our house that we love, and more importantly, remain close to our families.

Looking back, we now see that God was simply saying, "Not yet" on those other positions. None of those were right; He had something better planned. And I know He is saying the same thing in this situation. I picture Him saying, "Wait. In the end, there will be something better than you could have ever imagined. And it will be good. In fact, it will be perfect."

Photo Shoot

2009-07-21T21:18:00.000-07:00

Here are some pictures of our peanut striking a pose. The last one is my favorite! Isn't she beautiful?! I'll do a post tomorrow, but for tonight, I just had to share these pictures! Thanks for praying!

From the Beginning, Part II

2009-07-19T18:24:00.000-07:00

I am so sorry that I have not posted in so long. I promise I am not regressing to my former blogging ways where I would let months go by in between posts. I have just had a hard week. Even with all my big talk about trying not to worry about the future and what is to come with Camille, I sure have been doing just that this week. And let me tell you, I am more and more starting to believe that the Internet is evil, especially for parents. I feel like the first year med school student who reads about all of these diseases and thinks that she has every one. I keep finding all of these "syndromes" on the Internet with all of these vague "symptoms", and then I find myself scrutinizing my sweet child and thinking, "She does have prominent eyebrows. Could she have that?" (Oh yes! There are syndromes that have things like long eyelashes as a symptom!) Geez, it's become quite ridiculous--any of us could have half of these syndromes based on the symptoms listed, for crying out loud! I decided last night, after a breakdown in which all of my talk of faith, hope and trust went flying right out the window, that I was imposing a ban on the Internet for myself. And if I hadn't done that myself, Jason sure would have. Then, I spent a long time praying last night, and felt much better this morning. I enjoyed a very special day with both of my precious kiddos, Jason, and my parents, celebrating my birthday. After two of the most horrific months of my life, I actually had one of the best birthdays I can remember. Having my adorable almost-2-year-old come bursting into my bedroom this morning, gleefully shouting, "Happy Birthday, Mama!" was the best gift I have ever received. I am blessed for sure.

We actually had great news on Friday, and so I'm not sure the reason for the little funk I have been in the past few days. The great news was that Camille had gained 8 ounces in a week, and was up to 4 pounds 14 ounces on Friday. Even better was that she reached the 5 pound mark today, on my birthday! God is good! Our pediatrician said on Friday that whatever we were doing, keep doing it! And so we are continuing to feed, feed, feed our little peanut, and she continues to gulp down most of her bottles. She is now drinking 2 ounces at a time most times, which is what most babies her age are doing!

I am really trying not to be psycho about measuring Camille's head, but it's really hard not to want to measure it everyday, several times a day. Crazy, I know. But, it does appear that her head is growing, which is a good sign. PLEASE continue to pray that Camille's head and body grow and grow!

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Continuing on about my pregnancy and delivery... I know you have been waiting on pins and needles. Sorry for the delay in finishing the story. :)

I ended up going in to see my OB on Monday, June 1 for a regular appointment that I had moved up after my 3D/4D ultrasound where it had appeared as though I had low amniotic fluid levels. My doctor again said that everything looked great, but then I asked him about the possibility of me having low fluid. He said that he doubted that was the case, but would do a quick ultrasound to check anyway. As he started the ultrasound, he and the nurse and I were laughing and joking, and then all of the sudden, he got very quiet. Eventually, he said that it did appear that I had low fluid, although not too dangerously low. Even so, he wanted me to go over the hospital right then to have them monitor the baby for an hour to make sure she was not in stress. Then, he wanted me to come back the next day for a more extensive ultrasound by the ultrasound tech.

I left and called Jason in the car, quite hysterical. He met me over at the hospital, and they hooked the baby up to the monitors. After an hour, they told me I could go home because the baby looked and sounded "wonderful".

My mom came down to watch Henry the next morning, June 2nd, so that Jason and I could go have the ultrasound done. Jason was actually going to go to work, and I was going to go have the ultrasound done by myself because we were really not too worried anymore since everything had looked so great the night before at the hospital. So Jason went to work, but ended up turning around and coming back to go with me, just in case. He just had been driving and had a feeling he should go back and be with me, and I was so glad he did.

The ultrasound tech did the ultrasound and found that either my doctor had mis-measured the night before, or my fluid levels had significantly decreased since the night before, because they were now at a dangerously low level. She also thought the baby was on the small side--she measured 4 pounds, 4 ounces on the ultrasound. My doctor was off that day, and so she went and got another doctor. He came in and told me that I would have to have the baby that day. I was so upset and started crying immediately. He was very, very kind and very sensitive. He reassured me that this was not my fault that this happened, which I had been near hysterical that it was. I kept saying, "But I drink tons of water!" He told me that it was nothing I could have done, and that more than likely the placenta just gave out. (As an aside, I had a follow-up with my regular OB this past week, and I asked him his take on all of this. He agreed with the OB who delivered Camille and our pediatrician that it was likely a bad placenta. Actually, his exact words were, and I quote, "You just had a crappy placenta that crapped out on you." He was very positive about Camille, and thought she would catch up in growth and be just great. I am trying to hold onto his positive outlook, when I feel like everyone else has not been as positive.) Anyway, this OB also said that more than likely, the baby would be just fine since she was 35 weeks. He thought that since she would not be that premature, her lungs would be fine, and she would get to go home with me from the hospital. He told me that he would come over to do the c-section, which I was so grateful for since he had been so great. I felt a little better after his reassurance, and we headed over to the hospital.

I was really, really nervous in the hours before my c-section. One, I did not have a good c-section experience the first time around, so I was obviously nervous about that. But more than that, I was so nervous that something would be wrong with Camille. I just thought that 4 pounds 4 ounces sounded SO small! All of the nurses prepping me for my c-section again commented on how small my belly was. I kept thinking, "If I had a dollar for everytime someone told me that exact thing this pregnancy..."

The c-section actually went really smoothly this time around. I guess it helps to have not been in labor for almost 24 hours before you have one! Anyway, it took them a while to tell us how much Camille weighed after they pulled her out. I remember that I kept asking Jason over and over if we knew her weight yet. When they finally said, "3 pounds, 10 ounces", my heart sunk. I just knew at that point that things were concerning.

They let me see Camille for one second before they took her to the nursery for observation. I didn't get to hold her or even touch her. Little did I know that I wouldn't get to hold her until 5 days later--wow. They moved me to the recovery room, and I kept asking when I would get to see Camille. The nurses were great--they kept reassuring me that she just needed a little help breathing, which was completely normal for a preterm baby, and she would probably be with me by that night.

The hours kept passing by. They moved me to a post-pardom room, and my mom came in to be with me. Finally, Jason called down to the nursery to see what Camille's status was. Our pediatrician was there examining her and he said he would be down in a few minutes to give us a full report.

I will never forget those moments when our pediatrician finally did make it down to talk to us. He was very blunt and straight forward. He said that he had made the call to have Camille flown by helicopter to the NICU at Scott & White. He said that she was just having too much trouble breathing. I asked him if the breathing was the only problem. That was when he told me that not only was she very small for her gestational age, she also had a small head. I asked him what that meant, if that was something to worry about. He said that it was concerning, but that it was too early to be too worried about it. He gave me this whole spiel about how people have small heads all the time, and that small head does not mean small intelligence. I, of course, was still worried, but I was so overwhelmed with everything else that I tried to put that worry aside and focus on the immediate concerns. At that point, I thought that we would just be in the NICU for a few days. I guess it is a good thing that I had no clue that she would be there 4 long weeks.

The helicopter eventually arrived that night, and they wheeled Camille down to see me before loading her on. I saw her from across the room, hooked up to what seemed like hundreds of wires and tubes, enclosed in a giant incubator. She looked so small and so helpless. Jason went down to watch them load her on the helicopter, and I just remember sitting in my hospital bed feeling so overwhelmed with sadness and worry. I knew I wanted to get down to Temple to be with Camille as soon as possible, and so the next day, I begged the OB who delivered Camille, when he came to check on me, to discharge me so that I could go be with her. He agreed to, and so I was discharged less than 24 hours after my c-section. As the transport tech wheeled me out in the wheelchair, I remember thinking that there could be no worse feeling in the world than leaving the hospital after giving birth without a baby.

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More later on the whole NICU experience. I've got a couple of crazy stories about that. Well, okay, more than a couple, but I'll try to keep the rambling to a minimum.

As another aside, I stopped my OB on his way out the door at my follow-up appointment this past week. We had talked about a lot of things, and he was so very sweet to reassure me about Camille, but I wanted to thank him specifically for not blowing me off when I had asked him about having low fluid levels. He then told me that he was very glad that we had gone ahead and checked because he thought we likely saved Camille's life. Now that's putting things into perspective. Camille may have difficulties in the future, but she is alive. For that, I am so thankful.

Please keep praying for Camille!

From the Beginning

2009-07-13T09:38:00.000-07:00

I am so happy to provide this update on Camille: she is eating great and has decided to stop screaming in the evenings! God does answer prayers! I finally decided on Saturday that I was ditching the NICU feeding schedule--feeds every 3 hours, no more, no less--and was going with my gut. When Henry was a newborn, every time he would cry, I would try to nurse him first to see if he was hungry. If he was, he would eat and be content--if he wasn't, he would continue to fuss and I would try to figure out what else was wrong. With Camille, the NICU staff forbade any deviation from the strict "eat every 3 hours schedule" and so when we went home, I was afraid to deviate from that as well. On Saturday, however, I decided that the hospital's way obviously wasn't working too well for my baby, so I was going with my instinct and try to feed Camille based on her cues, not a schedule. Well, it worked like a charm, and she is much more content doing the "eat on demand" thing rather than the feeding schedule. It makes me feel terrible that we didn't try that sooner! She is eating way more than she did before--most of the time draining a 50 cc bottle, when we could barely get her to do a 40 cc in the past! Henry was always a difficult baby to "schedule", and I guess his baby sister is too. This just also makes me laugh to think that this is one more thing that our baby girl has decided to defy everyone on.

Camille enjoyed several fun visits from family members and friends this past weekend. On Friday, she got to see her Pops (Danny), her Granny (Jason's grandmom) and her Aunt Teresa (Jason's aunt). Then, on Saturday, she got to see her Uncle Brian, Aunt Sarah and buddy Luke (our very good friends who are more like family). Then, on Sunday, she got to see her Mopsy (my grandmom), Aunt Missy (my aunt) and Aunt Jena (my aunt). And of course, they all thought she was unbelievably adorable. :) She was very alert during all of the visits and enjoyed all of the holding. I finally got my baby who wants to be held! Lady hates being held, even though I got her to be my lap dog. Henry never liked being held much even as a baby, and certainly doesn't like it now--he's way too busy for that kind of stuff! I have to tackle him to get to hug and kiss him, which he thinks is a super fun game. But my Camille loves to be held, and will let you know when she is put down too prematurely for her taste!

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Several of you have asked to hear Camille's story from the very beginning, and so I have decided to dedicate several posts to that. I guess to really tell the full story on Camille, I have to start at the very beginning, the weekend I found out I was pregnant in October 2008. As some of you know, that weekend was crazy. I had taken a pregnancy test on Saturday morning, and thought that it was a positive result, but I also thought I could have just been seeing things, so I decided to wait to tell Jason until I could take another one. Then, later that day, Henry accidentally burned his hands while with my parents and Jason at my grandfather's house that was currently being remodeled. We were all frazzled from that experience--the trip to the emergency room, bandaged hands, etc.--but I just had to know if I was in fact pregnant. So on Sunday, I took another pregnancy test, and it was for sure positive. I told Jason, who I thought was going to faint, and we were a bit surprised, but very excited.

I had a pretty difficult pregnancy this time around. With Henry, I was hardly nauseated at all. With Camille, I was nauseated almost every day, and so very tired all the time. The exhaustion might have had more to do with a certain wild-man toddler more so than the pregnancy, but we'll blame the pregnancy instead. Then, also as most of you know, we had a terrible tragedy in January when my sweet mother-in-law, Sharon, passed away after a long, courageous battle with Ovarian Cancer. We had really, really hoped that Sharon would get to see the birth of this baby, and we were heartbroken that this baby would never get to meet his/her special Gigi. Two weeks after Sharon's passing, we found out we were having a girl. We were so excited--I had really thought it was another boy for some reason. We decided to name her Camille Lynne. Camille is a name Jason and I have both always loved, and Lynne is Sharon's middle name. I had so much fun getting ready for a girl! I have yet to lay eyes on a baby girl outfit that is not cute, and have really had to work hard not to buy every baby girl article of clothing that I see. We had fun painting Camille's room purple, and putting up a fun purple butterfly border to match.

The only thing that made me really nervous during my pregnancy is that I did not feel like my belly was ever "big enough". Nearly everyone I talked to during my pregnancy commented on how I did not look like I was as far along as I was. Plus, I had been much bigger with Henry. I really worked hard to dismiss this and not worry about it, though, because I had worried about everything under the sun with Henry, and was determined not to do that with this pregnancy. I did ask my OB about this several times at my prenatal appointments, and he said that things looked good. I was measuring on track; gaining weight steadily; and the baby was moving around well. There was not any indication that anything was wrong.

When I got to my third trimester, I decided that I wanted to have a 3D/4D ultrasound done at one of those places that does them purely to give you pictures of what your baby looks like in the womb. I had a good coupon, so I decided to go for it. I didn't tell Jason because I knew he would roll his eyes at me and tease me about spending money on such a frivolous thing. But, I knew this would be our last baby, and I thought it would be a fun thing that we were glad that I did later. Boy were we ever! The lady conducting the ultrasound spent a long time trying to get pictures of Camille, but was unable to, one because she was Frank Breech (with her legs up over her face) and two because I had such low amniotic fluid levels. I asked the ultrasound tech if the low fluid levels were something that I should be concerned about. She replied, "I'm not allowed to say anything 'medical' but if I were you, I would ask my doctor about that." The look on her face said everything, even if she herself could not. I rushed out and called my doctor right away.

I spoke with my OB's nurse, and told her what happened. She said that it was impossible to tell if I really did have low fluid levels if the levels weren't measured on the ultrasound, which they weren't. She assured me that everything was probably fine since I wasn't leaking fluid and since my measurements were on-track. I still felt uneasy, though, so I asked to reschedule my next appointment for an earlier date. This was Thursday; I was now set to come in on Monday.

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More later on my pregnancy/delivery later, but I will leave you with these adorable pictures that we took of Camille and our "firstborn" today. Can you believe how giant an 8 1/2 pound Yorkie looks next to her? I love the last one in the series! They had both had about enough of the photo shoot! Thank you for your continued prayers! Please don't forget about us, and keep praying for a miracle for Camille!

Quick Update

2009-07-10T18:10:00.000-07:00

Just a quick update to let you know that Camille gained 3 ounces this week, which as our pedi said, isn't good but isn't terrible either. She should have gained more like 7 to 8 ounces, but we were glad she at least gained some. He agreed that it is probably the colic that is causing some trouble with the eating and the weight gain, considering she is burning so many calories that she can't afford to burn with all of her fussing (well, okay, wailing and screaming). He said that it sounded like about as classic a case of colic as you can get, considering that it starts at the same time each night. Great. Anyway, he wants to give her another week since she did gain some, although not as much as we had hoped. So, we will give it our all with the feeding again this week, and see where she is next week. He did mention for the first time a g-tube if she does not start gaining more, which would require surgery, which makes this mommy very nervous. He acted like a g-tube would not be a big deal--it would just help pump some extra calories into her and then it would likely come out when she was 4-5 months old, once she had gained well and was big enough/ old enough to where eating wasn't such hard work for her. It sounds like we will look more into that option after next week depending on how she does. He is also still considering running more tests, but hasn't received our discharge summary from the NICU yet, and so wants to hold off on tests until he can see exactly the ones they ran so that there won't be any repeats. So, for now, we wait. More of that waiting thing that I am so terrible at. But I'm trying. And, I am enjoying my adorable little girl; my precious, precocious, chatter-box of a little boy; my funny and positive husband; and my God who is good. Pray for lots of eating, lots of gaining, lots of non-colicky evenings, and lots of sleep (just thought I would throw that last one out there as another one of those miracles you are praying for!).

The Unknown

2009-07-09T11:32:00.000-07:00

Thanks again for all of your amazing support. Jason and I don't know what we would do without the help and support from so many family members, friends, and church family. We have just been overwhelmed with all of the love, thoughtfulness and generosity, and are truly grateful. I have been trying to find some good in this whole difficult experience, and one of the biggest "good" things I have found is that I have been made fully aware of how blessed we are to have the friends and family that we do. We met a family while in the NICU who had a baby born the same day as Camille who was also in the NICU. This family had 7 other young children, though, and no family or close friends to help them out. Plus, they were from out of town, and so they couldn't go back and forth from the hospital to their home like we could. They would just have to sit in the waiting room with their 7 sweet, VERY well-behaved children ALL DAY LONG. Can you imagine?! Our hearts just went out to them!

I know I am risking getting mushy here, but I just have to thank a few people specifically. First, my Mom and Dad have been truly amazing. Jason and I have often talked about how lucky we were to have such wonderful childhoods with such wonderful parents, and how we want to provide that same sort of childhood for Henry and now Camille. My parents have truly gone above and beyond during this time. They have given up so much--essentially dropped everything--including an already paid-for trip to Las Vegas (sorry guys!)--to help us out. They have driven back and forth from Fort Worth to Waco countless times; kept Henry for us and taken him to do so many fun things to keep his spirits up; bought us meals; stocked our refrigerator; and most of all, encouraged us, loved on us, and made us feel better when we were so down. Not only that, but they have done all of this even though I know they are tired, worried, and worn down just as we are, and they have not ever complained or said they could not help with something. Instead, they have just continually asked what more they could do. Wow, I am truly blessed. Thank you, Mom and Dad, for everything. That sounds so trite, but everything is what you have given us, especially these past few weeks.

And I can't leave out my fabulous father-in-law, either. Danny has done the same--he has helped us out in so many countless, invaluable ways. He has made that trek on I-35 a ton of times these past few weeks to come visit us, hang out with Henry, spoil Henry, spoil Henry some more :), help us sort through and make sense of the already mountainous pile of EOBs from our insurance and bills; and so much more. Again, how blessed are we? At the ending of one of my favorite books, a mother has just been reunited with her daughter after thinking she was dead for many years, and she says simply, "My cup overflows." That is the last line of the book, and completely how we feel thinking about our parents.

I have to also mention two friends whose expertise, knowledge, and encouragement has truly been such a gift during this ordeal. Kevin, we have already told you a hundred times, but we don't know what we would have done if we had not been able to call you and ask questions, get clarification, get positive encouragement from such an awesome medical professional as yourself. Kristen, I know you have said that you have felt like you have not done anything for us, but you could not be more wrong. Being able to ask you questions and get encouragement from you as a Speech Pathologist on Camille's eating has been a true God-send. Kevin and Kristen, both of you have found your callings in what you do--that is so very evident to us, and we are so glad you did because we definitely took full advantage of your expertise during this time!

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Camille has done well today. She has been eating okay, better at some times than at others. We have discovered that she eats better during the day than she does at night, which is likely due to the fact that she has got a wonderful, enjoyable, fantastic case of true, classic colic going on right now! Oh yes. As if we did not have enough to deal with, Camille is letting us have it in the evenings. Jason literally looked up at the sky the other night, as Camille was screaming her head off, and said, "Really, God? Really? All this, and we get to deal with colic too?" I just burst out laughing and we laughed until we cried about that. Little stinker will be fine all day--hardly any fussing at all--and then, she turns into a little screamer, albeit a very cute screamer, about 5:00 p.m. She will fuss all. night. long. until about 6:00 a.m. when she will return to her happy, content state until 5:00 p.m. rolls around the next time. She screams as if she is in an immense amount of pain, and we can hear her tummy grumbling and rumbling, but so far, we have not found anything to help with that. I would love to hear suggestions if you have any. So, instead, we just take turns loving on her, walking her around, rocking her, and anything else we can think of to help keep her as comfortable as possible. And that's okay considering we still have a month's worth of holding that we are trying to make up for!

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I think in all of this, I am starting to realize that possibly the hardest part now, most especially for a worrier like me, is that there is still so much that is unknown. I am the type of person who likes to KNOW, and wants to know it NOW. I can't stand waiting to know something. And I absolutely hate surprises, even good surprises. Jason has to go to great lengths to hide my birthday and Christmas gifts because I can't stand staring at a box and not knowing what's inside. It drives me nuts. Now, I am facing the ultimate unknown situation. If there has been one thing that has been consistent about what the doctors have told us about Camille, it is that they simply do not know how she will do. We just have to "wait and see." I hate those words. I hate waiting, I hate wondering, I hate not knowing. But I think that's the way we have to live as followers of Christ. In a devotional that a wise friend sent me recently, there was a quote from My Utmost for His Highest that read: "You have no business to find out where God is leading, the only thing God will explain to you is Himself." As much as I would like to, I don't get to know what God has in store for Camille and for our family. But what I do know--what I do hang onto--is that God is good, and therefore, our future in Him will be also. So I will continue to hold onto that when so much in our lives is uncertain right now. I will try to accept that I cannot know what the future holds for Camille, but that ultimately, it will be good. And while I wait to discover what is in store for us, I will simply try to enjoy the now. I will never have these moments back with Camille. Jason and I feel like we were robbed of so much of the joy surrounding Camille's birth, and I am filled with so much regret about that. I can't get that back--nor can I get back Henry's babyhood either. But I can enjoy every moment of both Henry and Camille now, where we are now, not looking at the future and wondering what it holds, but simply enjoying the blessings of each day.

His Grace Is Sufficient

2009-07-07T07:42:00.000-07:00

First, thank you all for very kind messages. I know that there are so many people praying their hearts out for us, which is such a comfort. Camille is doing okay--not great, but not terrible either. Her eating has steadily gotten worse over the past few days. Yesterday, Jason and I could barely get her to eat the minimum of what she needs to eat to remain hydrated, but she is eating better so far this morning. Of even more concern is that Camille is still not gaining weight at the rate that she needs to be. Typically, babies her age gain an ounce to an ounce and a half a day. Camille is on a very high calorie formula, eating a very high volume for her weight (when we can get her to), and she is still gaining far less than an ounce a day. Even when she was in the hospital and tube-fed the high calorie formula at the high volume for her weight, she still did not gain even close to an ounce a day. We have to go into our pediatrician's office for a weight check on Friday, and if she has not gained weight sufficiently by then, then we have to start running more tests. I'm not sure what type of tests these will be--I think for metabolic disorders and other disorders that would cause her to have trouble gaining weight--but I'm not sure. So, that's the prayer request of the day. Please pray that Camille will start eating well again and begin to gain weight at the necessary rate. And, of course, please also continue to pray for a miracle for her--that she will be affected as little as possible, or heck, not at all (!!!) by her growth restriction/small head.

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In addition to your very kind messages, other things have brought me great comfort these past few days. One was a card that I received from some very dear friends (they also sent an adorable gift too--thank you Gartner ladies!). As Jason and I read this card, we were struck with how much it applied to us and our situation. It read:

Your daughter is not here by chance,
but by God's choosing.
His hand formed her
and made her the person that she is.
He compares her to no one else-
she is one of a kind.
She will lack nothing
that His grace can't give her.
He has allowed her to be here
at this time in history
to fulfill His special purpose
for this generation.
-Roy Lessin

I think we are going to frame this card and hang it in Camille's room to remind us that God does have a special purpose for her life and for ours, and that He has formed her for that purpose.

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One of my mom's good friends sent her a poem that really resonated with me.

My Father's way may twist and turn,
My heart may throb and ache,
But in my soul I'm glad to know,
He maketh no mistake.
My cherished plans may go astray,
My hopes may fade away,
But I'll trust my Lord to lead
For He doth know the way.
Tho' night be dark, and it may seem
That day will never break,
I'll pin my faith, my all in Him,
He maketh no mistake.
There's so much now I cannot see,
My eyesight's far too dim;
But come what may,
I'll simply trust
And leave it all to Him.
For by and by the mist will lift
And plain it all He'll make,
Through all the way, tho' dark to me
He made not one mistake.

I know that God has not made one mistake with our lives either. Jason told me a few weeks ago that as we look into our future right now, with all of the uncertainty regarding Camille, it may seem bleak. But, he said, that he believes that when we are old, looking back on our lives, we will not see any bleakness, but only goodness. We will see the perfect plan that has unfolded for our lives, and the blessings that God has heaped upon us from Camille and her life. As this poem says, the mist will have lifted, and it will be plain the goodness God has brought to our lives. I find true comfort in that thought.

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Finally, I wrote yesterday of the darkness that I was in the days following our pediatrician's visit, and how Jason spoke such words of truth and hope to me to help bring me up. I want to share another part of our conversation that I really see as the turning point for me in my view on this situation. (As an aside, I don't want it to sound like I am over my sadness--that I don't still despair in this situation. Believe me, I still have very low moments, and probably will continue to for a long, long time. So please continue to pray for me that I will be able to conquer those moments and remain hopeful. I think the following story/scripture will help me do that. It has so far.).

Jason had been to church on Sunday with his dad and Henry, while I had stayed home with Camille. It was after church that I told him how I felt like I was at the lowest moment of my life--how I didn't think I could go on. He told me about the Welcome that had been given at our church that morning by a church member who had just been through her worst nightmare. Her husband had been very ill and it seemed like he was not going to make it. She talked about how she thought her life was over; how she had lost all hope. Some church members took her to a prayer service, where she was prayed over by our church. Our pastor, Eric's, prayer in particular resonated with her, as it did with me as Jason told me about it. Eric had prayed words from 2 Corinthians where Paul had asked God three times to remove a thorn from his flesh, and God responded, "My grace is sufficient for you." Eric repeated that over and over that night at the prayer meeting, and since Jason told me of this, I have repeated it over and over to myself as well. Truly no matter what comes, God's grace is sufficient.

Our Gift

2009-07-06T08:14:00.001-07:00

Some of you know that I have had several blogs in the past that I have deleted, mainly because I have found them to say nothing too significant. I now have something significant to say, although in some ways, I wish I was back to rambling about nothing important on my former blogs.

Our precious baby girl, Camille Lynne, was born on June 2, 2009. She was born 4 1/2 weeks early because I had low amniotic fluid levels (more about my pregnancy and delivery on another post). She weighed only 3 pounds, 10 ounces, which was very, very small for her gestational age. Because she had difficulty breathing at birth, she was flown by helicopter to the NICU at Scott & White Hospital in Temple, where she stayed for exactly 4 weeks, first for breathing issues, and then for feeding issues.

At first, I thought the only problem was that Camille was having difficulty breathing and was small. However, the doctors at Scott & White were most concerned that not only was Camille's body small, her head was small as well. Generally, babies who are growth restricted in utero (like Camille was) are still born with large heads because the head is usually spared from the growth restriction. Typically, the baby's length is the first to be affected, then the weight, and then the head. Camille was the opposite: she was long in length, but with a very low body weight and a small head. This obviously was a huge blow to us to think about something being wrong with Camille's head and therefore brain, but I just kept hoping that was how she was made--with a little body and a little head. Henry was always proportioned that way, although on a much larger scale. He is slightly above average in length, while his weight and head are slightly below average. And he is the healthiest, smartest, most creative, amazing little boy I know. In addition, the NICU staff ran test after test after test on Camille, all of which came back negative for abnormalities (more on the rollercoaster ride of tests too on a later post). Of course, I was still very worried. I made the terrible mistake of googling babies born with small heads, and almost threw up at what I read. But, I just kept hoping and praying desperately that the NICU docs were too focused on abnormality and finding what was "wrong" with Camille when it could be nothing.

However, when we got home, we had a follow-up with our pediatrician. Normally, our pediatrician is very laid back and laughs at me when I bring Henry in for random minor things that I think are major catastrophes. He is essentially the perfect pediatrician for our family because he never gets all worked up about things, and remains calm and reassuring, which is exactly what I need, as I am the complete opposite, especially when it comes to my children's health. I went to this follow-up visit fully intending for our pediatrician to say "Oh, her head is small, but that's nothing. She'll be fine. Don't worry." I thought we would laugh together about how ridiculous the NICU doctors were for thinking that this was such a big deal and for overreacting about something that was nothing. I, however, was wrong. Our pediatrician, like the NICU doctors, is also concerned about Camille's head size. His was non-committal on her prognosis--he did not doom her to a life of severe mental deficiency, but he didn't say that for sure would not happen as well. He basically said what the NICU doctors had told us, but that we had refused to accept. Camille's small head size indicates that it is likely that her brain growth was restricted, and therefore, it is likely that she will have some mental deficiency in the future. This could range from minor developmental delays and learning difficulties, to severe mental retardation. There is no way to tell at this time how severely she will be affected.

Her prognosis also depends somewhat on what caused this. Usually, a small head is due to some sort of maternal infection in pregnancy, but the NICU doctors had tested Camille for all of the typical infections, and the results were negative. Camille had undergone chromosomal testing as well to see if that could be the cause, but the end results on those were negative as well (the chromosome testing is a whole other story in and of itself, but I'll tell that on a later post too). With those two things ruled out, then it appears that the cause is either severe growth restriction due to a placental problem, or some sort of genetic abnormality (there are thousands of genetic syndromes out there--believe me, I googled it--and we could test forever and still not know if it was a genetic cause or not). Our pediatrician and OB are inclined to believe that it was severe growth restriction due to the placenta being bad. A bad placenta could have caused the low fluid and the growth restriction. According to them, there is nothing I could have done to prevent a bad placenta. As our pediatrician said, "It was just plain bad luck." I don't know if this makes me feel better or worse. On one hand, I really, really struggled with wondering if I had done something to cause this. All of the doctors involved kept assuring me that I did nothing to cause this--that it just happened--but as the OB who delivered Camille said, "It is human nature to want to find out why this happened, and human nature to blame yourself." So in some ways, it makes me feel better that either way, placenta problem or genetic cause, I did not cause this. It was just "bad luck" and "nothing I could have done to prevent it from happening". But in other ways, that just brings on the "Why Me's" in full force. Why, then, did this have to happen to me? Why, then, do I have such bad luck?

The days following our visit to our pediatrician were probably my lowest, when I realized that I needed to accept that Camille might have these sorts of issues in the future. My lowest crept even lower over the next few days as I once again scoured the Internet for info on children with small heads. The info out there is not good. I just sat at my computer with tears rolling down my face as I read that most children with small heads like Camille's do suffer from mental retardation, seizures, facial and cranial deformations, etc. I found several stories of children with this condition, some of which fared pretty well, others who did not. One story in particular was about a little boy who was completely wheelchair bound, unable to talk, walk, or even understand what was said to him, all because he had a small head for unknown reasons.

It was at this point that I truly did not think I could go on. I could not make it. I could not do this. I could not live with the possibility that my child would have these sorts of difficulties. This was my worst nightmare, every parent's worst nightmare. I had thought that having my child in the NICU for 4 weeks was the worst it could get, but this surpassed that ten-fold.

I truly wanted to die in these moments. I could not imagine any worse pain than what I felt then. At likely my lowest point, my husband proved once again how truly amazing of a husband he is and how blessed I am to have him in my life. He snapped me out of my ultimate pity party, and said, "No matter what happens, she is a gift. She is a blessing."

And that is Truth. All of the lies Satan has been telling me--that I can't do this, that I can't go on, that my life is over--those are not Truth. The Truth is that Camille is a blessing, a gift from God. God gave her to us. Whatever happens with Camille, that will always remain true. We refuse to see it any other way. I once heard someone say, probably my again very wise husband, that God does not make mistakes. He doesn't look down at something that has happened and said, "Oops, I didn't mean to do that." Now, please don't get me wrong that I think that God gave Camille this condition, and that it was His will for her to have these difficulties. I truly do NOT believe that God wills these terrible things to happen. As Jason would say, that's just plain bad theology. But I do believe that God takes these sorts of things and turns them into good. I truly believe He gave Camille to us as a perfect gift, and that she will give more blessing than anything else we can imagine.

All that to say, this does not mean that I will not keep praying for a miracle for Camille. I also know that God works miracles everyday, and He can work one for Camille. So I will continue to pray everyday that she is okay--that she is affected by this as little as possible--that one day, when she is graduating from Med School or Law School, we can all look back on this in disbelief that it actually happened. I ask that you continue to pray for that miracle too. I also ask that you pray that if that miracle does not occur, and the worst does, that we (Jason, Henry, me, my mom and dad, Danny) are okay. That has been a little prayer that I have been repeating over and over again in my head since this all started: "God, please, please, please let Camille be okay, and if she is not, then let us be okay". Simple, but from the heart.

My promise to you is that I will use this blog to tell Camille's story--to update you (hopefully daily or every other day) on how she's doing, on how we're doing, and most importantly, how you can pray specifically for her and for us. During one of the many times I was driving to Temple to see Camille while she was in the NICU, I was praying, as I usually did on those drives. In that prayer, I told God that if He worked a miracle in Camille's life, I promised that we would tell her story and tell of His miracle to everyone we met. After thinking about that a while, I realized that should not be the end of my prayer. I then prayed that if God could not work this miracle that I so desperately wanted, then I would still tell Camille's story because whatever happens, I know from the depths of my heart that Camille will bless us and bless others, and that either way, her story as a blessing from God needs to be told.