On Friday Samuel got a visit from the music therapist. I had no idea that was even a thing, much less that they would come to visit a 2 month old baby. She helped us record our voices reading books, so that Samuel can hear our voices even when we are not by him at night. And when she found out that Seth plays guitar she went and found one that he can hang onto during our extended stay in Deleware!
That evening when Samuel opened his eyes, Seth played his guitar and we sang and worshipped. Samuel stayed wide-eyed for almost 2 hours listening to the music and watching our every move! Which is a big deal for a little guy on so much sedation.
We ALL needed music therapy.
Samuel was mesmerized the entire time. He stared deeply into our eyes and gave us some smiles!
As soon as Seth stopped playing, Samuel's lower lip puckered out and he started crying! It was another one of those special memories with our brave little boy that God so graciously gives to keep us going. Something for us to hold onto and look back on in the midst of the hard days.
And we have had hard days...
Samuel is now 19 days post-op for his G-tube surgery, and we are still praying for a dirty diaper. The doctors are stumped as to why Samuel's digestive system doesn't seem to have woken up after surgery. The surgeon even said he has never seen it take this long. They tried feeding him again on Sunday, but it only lasted a few hours before they realized everything was just backing up in his stomach. This surgery which was almost an after thought - "by the way, we should go ahead and give him a G-tube before we try to extubate him" - has now added almost 3 weeks to our timeline.
Right now it is so easy to be frustrated. It is so easy to get discouraged every morning when we walk in and hear the same report - no dirty diapers, intestines are still distended...another day gone by without progress. Another day added to our time in Deleware. Another day...
We know that God has ordained each of these days. We are confident that He is still writing this story, and He is still in control! So there is a reason. In the meantime we are trying to focus every day on what we do have, rather than what we are missing out on. We are so thankful for each of the little blessings God has provided along the way to keep us going - such as music therapy!
Please continue to pray for Samuel's stomach and intestines. They have run all of the normal tests, and have not been able to find a cause. All of the scans have looked normal, which is why everyone is stumped as to what is going on.
Pray that the doctors will have wisdom on what steps to take, and when to take them.
Pray that Samuel is still able to continue gaining weight without actual food (he is back on IV nutrition).
Continue praying for the healing and growth of Samuel's lungs, as the plan is still to try to extubate him once his digestive issues are figured out.
This is His story, and it is all for His glory!