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!