Notes from the NICU

It has been a while since I last posted an update, and as you can imagine, a LOT has happened. Claire was born on January 5, 2011 at 11:43 a.m. Though she came quietly into the world (with nothing more than a slight whimper) her APGAR scores were 9 and 10. (APGAR is a test given to all newborns 1 minute and 5 minutes after birth that assesses their overall health and vital signs. As I later learned, few babies score a perfect 10, so even in the first minutes of her life, Claire managed to amaze everyone!)

Over the past 10 days, Claire has had more tests than some people have in their lives: An echocardiogram a kidney ultrasound, two CT scans, an MRI, and an EEG. Here's how each of those turned out:

Claire's Heart (Echocardiogram)
The echocardiogram revealed that Claire's heart is perfectly normal! Yay! Although we had never seen a problem with Claire's heart on any previous ultrasounds, with her brain and kidney issues, doctors wanted to double and triple check it just to be sure. Often, when doctors see more than one anomaly in a baby, they begin to suspect a syndrome, and since many syndromes include heart defects, it makes sense to take a look at the heart to see if there is anything amiss. Luckily, Claire's little ticker works just fine! This doesn't mean that Claire does not have a syndrome; it just means that doctors feel more comfortable ruling out the syndromes that include heart defects.

Claire's Kidneys (Kidney Ultrasound)
The kidney ultrasound confirmed that Claire has only one working kidney. The other kidney has cysts on it and stopped working a long time
ago. The good news is that people can live with just one kidney, as long as they take good care of it. The other bit of good news is that doctors see no reason to take out Claire's non-working kidney at this time. I'm so glad - one less surgery for our Claire bear!

Claire's Brain (MRI, CT scan, EEG)
A lot is going on with little Claire's brain. As planned, Claire had surgery on her second day of life to place a shunt in her brain. The shunt will drain the excess fluid from her brain into her abdominal cavity, where she will be able to excrete it. She will have the shunt for life. So
far, it is working well! We have already seen a decrease in her head circumference, and a CT scan shows her brain
matter has started to expand. We hope and pray that her little brain continues to grow!

Up until Monday night, Claire was doing incredibly well and was surpassing all expectations -
she was taking food from a bottle, was breathing on her own, and appeared very active and alert. Unfortunately, on
Monday night, her nurse saw what he thought was a seizure, so doctors decided to do an EEG study. Claire was hooked up to an EEG machine on Tuesday, January 11th, and between Tuesday and today (Saturday), a neurologist monitored her brain activity and determined that Claire has been having short "silent" seizures. The seizures typically last less than one minute, and Claire shows no outward signs
of having a seizure - she does not stop breathing and is still responsive to the environment around her. The neurologist tried four different medications to try to control thr seizures, but none of them worked. Today, the neurologist decided that further attempts
to control the seizures would be too aggressive (they would involve fully sedating her and
placing her on a ventilator), so we have decided to "wait and see.".

Sadly, the neurologist also suggested that Claire's seizures may be caused by a brain malformation called Polymicrogyria, a condition where the brain has too many small folds. He showed us Claire's MRI and pointed to a spot where he saw what appeared to be too many small folds, but then he told us that it is difficult to tell if she has this condition at this point, since her brain is so compressed and may change as it fluffs out. We really hope and pray that it does and that once it is done "fluffing" it will look and act like a normal brain, with no malformations.

As you can probably tell, the past 10 days in the NICU have been quite the roller coaster. We are ready to go home, although we don't know when that will be. As I understand, Claire will need to work on her feeding and be able to keep her breathing in check before she will be released. This has been more of a challenge since she was placed on seizure medications, which make her drowsy and slow her breathing. Luckily, Claire has had sone wonderful doctors and nurses that are helping her get there. And, of course, her mommy and daddy continue to live and support her and will do whatever it takes to make sure she has the best outcome possible. She is such a sweet little girl and deserves the best!