PICU Day 14 ~ (July 8, 2012)

~Giving Nurse Jacy a Goodbye High Five~

Noelle turned seven months old today and celebrated by graduating to the Intermediate Care Unit where they keep the high acuity patients.  We still have one more level to step down {what they call "the floor"} before she can go home, but we are one step closer.  Oddly enough, all of these units are connected in a "U" shape, but the PICU has its own entrance.  So now we come through a different set of doors and have a completely different care staff {other than the main doctors, who remain the same}.  The atmosphere is quite different and much more noisy than where we were previously; and unfortunately, Noelle has taken careful notice of these facts.  I did not expect such a reaction from her since we moved only a few steps down the hall, but it is different enough for her to feel unsettled and scared when she wakes up and does not recognize her surroundings.  Thankfully, we still have our own room and can both still stay with her and be close for her every need.  The parameters for moving to the next level have not been revealed to us yet, but we do know that the doctors would like to complete some further studies before she goes home.  The latest theory is that she may be aspirating some of her milk when she eats or refluxes as she still chokes fairly often when she eats her bottle {preemies often mix up the eating sequence: suck, swallow, breathe, and instead often breathe in before swallowing, causing themselves to choke}.  She has gotten better about it since she was in the NICU, but it is still pretty severe  and even still scary to us and would cause most people to panic if they saw one of her episodes.

~Getting rocked by Daddy after waking up scared~

These possible aspirations could explain the trigger to this aggravation of the pulmonary hypertension, and so a swallow test and perhaps a barium test will be performed to determine if there is any issue and if they can help her in some way.  We are hoping for some definitive results from these studies and even some solutions that may prevent us from being back here shortly.  A sleep study has also been mentioned since she still tends to desat at night while sleeping deeply, and they want to be certain that there is not a true issue either.  The blood clot in her leg is still of utmost concern although they were able to detect a faint pulse in her foot throughout the day, encouraging us greatly.  We will continue with the levonox shots for at least four more days and are praying that will be the end of those with only a partial baby aspirin being the therapy used at home.  Noelle weighed 6lbs. 1oz. today which is encouraging because she is consistently above 6lbs now, but slightly discouraging since she was 6lbs. 2oz. two weeks ago before all of this started, and we have not yet progressed past our baseline from that time.  However, we are hopeful that once she fully recovers from this issue that she will start hitting larger growth spurts as her heart continues to heal and quits burning extra calories trying to function properly.  I am sure there is more that I am forgetting, but I will have to write tomorrow concerning anything missed.  Tonight will be filled with lots of snuggles as we attempt to help Noelle adjust to her new space, and we truly thank you for your prayers as we traverse all of these transitions in an effort to make one more step toward home.  Thank you.