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.