Samuel has been doing great ever since being put on the conventional ventilator Friday morning. The nurse and Respiratory Therapist said the transition was seamless, completely without incident. He's been coasting along on 28-33% oxygen and fairly low respiratory support settings ever since. It’s absolutely amazing this is all the support he’s on. He used to take up an entire corner of the NICU. The doctors have informed us that his pulmonary hypertension is totally gone and his diaphragmatic hernia has morphed into insignificance.
I just want to re-iterate the diagnosis given to us at CHKD and then again affirmed for us at UVa. The doctors told us Samuel had a very rare and very serious type of hernia. We were told he had a right anterior hernia, which is very unusual (of course! everything about this kid is unusual!) and that as far they could see he had almost no diaphragmatic tissue at all. As one doc so graciously pointed out..."and you can't live without a diaphragm."They then explained to us that this was irreparable, that there was no way to surgically repair it with such a scant amount of tissue. The problem was
compounded by the fact that a very large portion of his liver had migrated through the hernia and was up in his chest, arresting the process of lung growth. One of his lungs was so small they told us it may never grow beyond where it was. Another doc also tactfully pointed out..."and you can't live without a lung."
Things just kept on getting more and more complicated from there on out. We were really stuck between a rock and a hard place. They couldn't repair the hernia due to insufficient lung strength which rendered him far too unstable to operate on. To make matters worse, the lungs weren't predicted to get any stronger with the liver where it was never meant to be.
This was so frustrating to know, so all we could do was pray. You all prayed along with us and God heard our cries. Friends, over the last couple days it has been clearly communicated to us that not only are Samuel's lungs fully expanded but there is no liver in his chest...and the hernia is all but healed. God has healed him. We are rejoicing in His promises today and will continue to do so as we hope and trust He isn't finished with this miracle baby yet.
As things stand now, since the hernia is no longer an issue except for the possibility of him having a little acid reflux because of it (ummmm who cares?!?), he would come
home, once off the vent, no longer requiring any surgeries! The heart defect and
Omphalocele have always been issues they would wait to address down the road
(possibly 8 months to a year, maybe less).
This is amazing! It has always been our goal to get him into surgery and right now his body isn’t requiring it.
They have begun to wean him off his pain meds little by little and we pray the
transition off these powerful drugs is painless for our precious little guy. They began with the Morphine yesterday and rotated in the Versed today, then will go back down on the Morphine tomorrow. They'll rotate the weans back and forth between drugs each day until he's off. So far he hasn't shown any withdrawal symptoms other than being more alert, which we are absolutely loving.
In some ways, we feel like we just had a baby and we're so in love with him.
He's so amazing. We are watching him come to life before our very eyes. Sometimes he looks overwhelmed by all the new sights and sounds that are coming in more and more clearly for him as time passes. Everything is coming into focus and sometimes the poor guy looks a little confused. He has the sweetest demeanor even amidst all he’s been going through. His waking moments are so precious to us it can hardly be explained in words. We know they will only become more and more frequent and are so looking forward to watching him grow and getting to know the little person he is.
Please continue to pray for his total healing which still includes his heart and the progression of his Omphalocele. Please also be praying that as he comes off the narcotics, he has zero withdrawal symptoms, including steady BP and heart rate and no nausea or overall discomfort. Please also be praying that God heals his heart, that he gets off this ventilator soon and can support himself, for perfect lung function, an easy
transition to breast feeding (some kids who’ve been intubated end up with oral aversions and have trouble feeding) and that we can him home very soon.
We see the end in sight and are so very anxious to get home but we are praising God for what he has done. We were parents to the sickest child in the hospital just two weeks ago. Death was in the air and everyone felt it. I didn’t let Stefan take pictures of him some days since it upset me too much. I can hardly believe I lived through the last five weeks. At times it felt like I wasn’t. Every day I walked into that hospital, it felt like I was the one dying and there was nothing I could do to help my baby.
Samuel means God Heard/God answered. He has heard and He has answered. I’m sure I get lots of eye-rolls, since I tell anyone who will listen, and often those who don’t what the Lord has done and is continuing to do. He’s been working on Samuel’s body in
secret all this time as our hearts were breaking and the doctors were scratching their heads. I just know when this is all over, my rejoicing will increase and I’ll be shouting our story from the mountain tops. We both continue to be mind blown at all the support out there. We thank God daily for the prayers and ask him to bless each and every one of you. More good news to come…..Hannah and Stefan
You can follow Baby Samuel's progress and provide support, encouragement and your prayers on this website: http://funds.gofundme.com/Baby-Samuel