Sunday, September 27, 2009

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!

Saturday, September 26, 2009

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.

Tuesday, September 22, 2009

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.

Tuesday, September 15, 2009

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.

Thursday, September 10, 2009

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.

Tuesday, September 8, 2009

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.