A Few Setbacks but Back on Track

From Katy & Andy:
Nov 2, 2011 -Monday morning we arrived at the NICU to hear some disappointing news.  Jacob had several set backs early that morning that delayed his progress a bit.  Over Sunday night they weaned him completely off the nitric oxide and he seemed to be tolerating it well.  We were so excited since that meant that weaning him off the ventilator would be next! He was making such great strides...that is until his left lung (the good one) slightly collapsed due to his lung tissue having too much fluid (also known as 'wet lung'). The doctors also decided to remove his epidural because it was leaking and they were afraid the wetness would affect the integrity of his skin. They also were unsure of how effective  it really was at that point anyway. Needless to say, it was still doing its job and since it was removed, Jacob has had to have his morphine increased. The day only continued to get worse as he started to develop a fever. Poor Jacob felt awful! He was very sad and crying, and his stats and blood gases fell significantly. It was a very hard day for us too seeing our baby suffering and not knowing how to help him. The day was very long. We never felt comfortable leaving his side. It was one of those days where we did not leave to eat or anything else for fear that the moment we left something else would happen.

Tuesday was a much easier day for the three of us (and his nurses!)  Jacob was very content and SLEEPY!  He he spent the entire day in a deep sleep recovering from all his upsets the day before. Slowly his blood gases started improving and he needed very little pain medication (in addition to his morphine drip). His left lung was recovering steadily from the previous day's setback. His only trouble was retaining a lot of extra fluid. He is now on a medication for that as well.

Today was arrived at the hospital to receive very happy surprises. First of all, Jacob was bright eyed and alert!  He was looking all around, enjoying his classical baby music, and taking in all the sights!  He stayed awake for hours and clearly displayed his one week old abilities. He is figuring out his hands and how to grab at his tubes. He doesn't really try to pull them out but likes to hold on or try to put his hands in his mouth. He is able to focus his eyes more and steadily look at objects. He also has started to intently cry and has real tears. The only hard part for us is he can't really cry because of his breathing tube. So it is silent and looks like a baby crying on T.V. without the volume turned up. It is hard for us because we cannot pick him up to console him and sometimes touching him seems to make him cry even harder. It is a very helpless feeling.

After a morning full of energy and curiosity, Jacob fell into a peaceful slumber...and so did Mommy. I was able to put down the side rail and lay my head next to his taking in his sweet (medical) baby smell. I could feel his warmth radiating from his precious head and hear his little breaths. It was all too easy to get carried away and imagine laying side by side with him for a sweet snuggle. I can't wait for that day to come.

Another great surprise was his blood gases were amazing!! His CO2 dropped from 66 to 49. (The doctors want him to be below 50.) Even better, his numbers remained good all day. He is VERY slowly being weaned off the ventilator and is only requiring 40% oxygen at this time (you and I breathe 21%) so we are getting much closer!

To top off the day, Jacob got a nasogastric tube (NG tube), a thin, flexible tube inserted through the nose for feeding.  He was able to receive breast milk for the first time today!  We also used a Q-tip to put some in his mouth which he LOVED!  He just sucked away! All through the day he continued to suck on his vent tube giving us hope that he won't have such terrible oral aversions as a good majority of CDH babies do. He continued to be calm and comfortable throughout the day up until he threw up. That really scared Mommy as it was so abnormal and unexpected. His little tummy was just too full of mucus and not used to anything in it yet. He seemed to be digesting the milk well though and fell right back into a comfy slumber once he was suctioned. We will continue to see how he tolerates his milky through the night and tomorrow!

We are hoping for stability through the night and most likely he will have the drain in his abdomen removed tomorrow. This will allow him to be much more comfortable and easier for us to hold him! : )