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Merry Christmas from the Whitts!

How We Do This

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

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

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

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...

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

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

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...

...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...

...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

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

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...

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

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

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

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

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...

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

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

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

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.