We were supposed to be working on weaning the ventilator and working towards extubation (hopefully the last big step before we can go back to Arkansas!). But Samuel had a little setback this week. After his G-tube surgery they started feeding him again Friday night, and he seemed to be handling it well all through Saturday. So well that they even had him back up to full feeds by Saturday night! But throughout the course of Saturday night, Samuel's belly became distended and his body temperature dropped. They had to stop feeding him and took cultures to see if he had an infection. It became clear that Samuel hadn't been properly digesting the food he had been getting.
Over the course of this week all of the cultures have come back negative, but they have kept him on an antibiotic just in case something was missed, since he had so many markers of infection Sunday morning. They also think that the slowed movement of his intestines may just be from the surgery itself. Samuel's surgery wasn't just a "simple" G-tube surgery (which can cause the digestive system to slow down for 2-3 days), they also had to take out his intestines to check for the malrotation that they had seen on the scan the day before. This puts the intestines into even more shock, and would explain a longer recovery time.
It is now day 6 post-op. We are praising God for some quiet bowel sounds that returned yesterday, which indicates that things may slowly be getting back to normal! Hopefully his recovery will continue moving in the right direction, but it still may be a few more days before they are able to start feeding Samuel again. In the meantime, they don't want to test Samuel's lungs while his stomach is unhappy, so extubation will have to wait.
It's hard to accept another slow-down to the process, especially when Samuel had been doing so well.
It's hard to watch Samuel cry when I know part of that is due to an empty stomach that we can't fill.
But we know that God's timing is perfect.
We are trusting in that.
We HAVE to hold on to that!
Maybe Samuel's lungs need an extra week of growth and healing before they will be ready to breathe on their own!
Only God knows, and that's okay.
Right now, we are simply loving being able to love on our son. In the past 2 weeks Samuel has really begun responding to his mommy and daddy's voice and touch!
He KNOWS when we are here, and he responds when we comfort him!
I can't tell you how much good this has done for our hearts.
As hard as it is to watch our brave little Samuel David going through all of this, it brings me so much JOY knowing that he feels loved.
From the time he was born we asked God to allow Samuel to know what love is - despite all the tubes and needles - especially when we had to be hands-off with him. We asked God to comfort Samuel when we aren't with him, and to hold Samuel even though we can't. He has done ALL of those things, and now I believe God is allowing us to see that Samuel does feel our love! Samuel does know our voices! But more importantly, I hope that he knows his Heavenly Father's voice.
"My sheep hear my voice, and I know them, and they follow me. I give them eternal life, and they will never perish, and no one will snatch them out of my hand. My Father, who has given them to me, is greater than all, and no one is able to snatch them out of the Father's hand."My greatest prayer for Samuel? My heart's deepest desire?
That Samuel will hear and respond to his Heavenly Father's voice all the days of his life.
That, when he is old enough to understand, Samuel will daily choose to follow God.
That this story which God has written for Samuel David's life will always be a reminder to Samuel of the loving faithfulness of God.
That Samuel will bring glory to God all the days of His life!
That Samuel's lungs, which we daily pray for God to heal, will praise God with every breath!
That Samuel's heart, that the doctor's at one point said was too small and too broken, will continue proclaiming God's goodness with every beat!
- That Samuel's digestive system will begin functioning normally again.
- That Samuel will be able to start feeds again soon.
- That Samuel will be able to remain comfortable as they continue to wean his sedation meds.
- That God will use this "extra" time to continue healing and strengthening Samuel's lungs for the big test that is to come!
- For His continued provisions while we have been here in Deleware!
- That we are able to interact with and comfort Samuel!
- That we are one day closer to HOME!
This is His story, and it is all for His glory!