Not Just the Facts

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

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!

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...

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

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

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...

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!