Life in Slow Motion

From December 3rd, 2009 when we found out that Hunter had heart abnormality until one week ago tomorrow (birth) we felt like we were treading water, not moving all, just testing with no concrete answers...now, though we are progressing with each passing moment it feels like we are moving in slow motion...the days are long and emotional stress definitely slows you down. BUT I can't complain, things are moving along as planned. It is hard not to lose your patience and want to accelerate the process.

Last night was tough, at 2am I was reminded that we have 2 patients to take care of. We tend to lose focus on the fact that Megan just had major surgery...she woke up in allot pain and discomfort and it was hard for both of us to get back to sleep...

Today we learned from Nurse Gordon (who takes incredible care of our son and so much time to explain in detail every scenario) that Hunter is doing really well still. Hunter had multiple visitors today; Kiki and Papa, Grandpa and Nona and Lindsay all visited him today and reported back to us that his eyes are open, he is moving every thing and he is looking great. When Megan and I arrived this afternoon Gordon told us that the cardiologist came in and decided tomorrow morning it is time to remove Hunters breathing tube-which means his strength is up and his lungs are functioning...this is big. Right now, you can really tell that he hates that thing. We are praying that it doesn't cause an oral aversion to feeding, which is a real possibility. It's amazing that the tube doesn't make him gag...as he squirms around (still mildy sedated) it makes me gag watching the tube in his throat, not because it's gross but it's like watching somebody else lick a popsicle stick...for perspective, Hunters throat is about 12cm from lips to lungs...the tube is in 9cm from his lips...so tomorrow when they remove it there are some possibilities; 1 in 20 need the tube reinserted due to "swelling" and possible blockage of the throat, this will be apparent between 4 and 12 hours after removal at which time he will have a 1 on 1 nurse "watching him like a hawk". The tube will cause a kind of Larangitis (spelling?) that has weakened his vocal cords so when he cries (which will be music to our ears) he won't make much noise...

Once the tube is removed the rest begins to unfold slowly...assuming an optimal performance by our little fighter we could have most of the tubes and drains out by weeks end, of course we have no expectations. As these get removed he will be slowly removed from the highest level of the ICU. Gordon told us that if Hunter was a "typical" VSD patient (holes with no arch abnormalities) that he'd be able to be discharged by the end of the week. Gordon also told us that he has only seen 2 other patients with Hunters type of "dual" complication so he has no clear answer as to any sort of schedule...again, we have no expectations and to assume optimal recovery is to assume allot. So we'll be patient and enjoy our little victories each day. Tomorrow may be a step forward or two steps back, but we'll hope for the best.

We are so excited to be one day closer to holding him...he definitely knows our voices when we stand over him, kiss him and pet him...it's hard not to scoop him up and snuggle him, but we're close.