Jack loves to be held and sung to, and he actually has favorite songs. We can tell by how a particular tune affects his vitals. This one is in his top five; a hymn by Matt Boswell and Matt Papa. Here are the lyrics of the first verse:
Christ the sure and steady anchor
in the fury of the storm
When the winds of doubt blow through me
and my sails have all been torn
In the suffering, in the sorrow
when my sinking hopes are few
I will hold fast to the anchor
it shall never be removed
Last Friday marked 18 weeks since our little man made his early entrance. Jack continues to grow and get stronger. He’s steadily approaching 8 1/2 pounds and is on a good growth curve, landing in the 24th percentile. That’s a huge leap from when he wasn't registering on the curve at all! Every week he has sessions with a physical therapist, occupational therapist and even a music therapist and they all report that he does well and they are pleased with his development track. We’ve been told multiple times even this week that it’s amazing he’s not had any brain bleeds. We’re so grateful for all the ways the Lord has protected him!
Since our last update the team was able to wean the pressure on Jack’s ventilator two times. We were hoping to see more progress but his CO2 levels continue to be unstable. The doctors have explained that at this stage in Jack’s development we are waiting for his chest wall muscles to grow and get stronger. You could say that he needs to grow into his lungs. The hope then is that as he grows and heals his lungs will become stronger as well.
Jack has been able to maintain very low oxygen settings, settling in at just 21% which is the same saturation of the air we breathe. This is good news for his brain and his eyes. His eye disease has not advanced beyond stage two, however the ophthalmologist is predicting that he will need surgical intervention at some point. This is a bit precarious because he will need to be intubated for the surgery. If it’s determined that he needs surgery sooner than later, it could mean even greater respiratory set back and cost us many more weeks in the NICU. Our hope is that he will not need the surgery at all, but if he does that it can be done at a time when his lungs are healthier and able to sustain the stress of the procedure. We’re asking God to give the doctors wisdom for both the protection of his eyes and his lungs.
Praying friends, here are some specific requests:
1. That Jack’s eyes would heal, but that we would rest confidently in the goodness of God regardless of outcome.
2 .That Jack will turn a corner and heal at a pace that would send him home soon. The team is not surprised by the pace but they are concerned with why progress has been so slow.
3. That God will give us stamina and joy on this long road.
Please also join with us in thankfulness for:
1. Our two primary nurses at CHLA who have been a gift of grace to us.
2. Several CHLA staff who have faithfully and selflessly encouraged us week after week.
Psalm 31:24 - "Be strong, and let your heart take courage, all you who wait for the LORD!"
I continue to pray daily for baby Jack‘s lungs, oxygen and eyes. In the past, I worked with visually impaired and blind preschoolers, so this part of Jack Henry growth and progress is very close to my heart. God has brought him SO far and protected him from SO much, it is miraculous!! ♥️
This made me think of Zeph. 3:17: The Lord your God is in your midst, a mighty one who will save; he will rejoice over you with gladness; he will quiet you by his love; he will exult over you with loud singing.” Your singing wasn't loud, but it was definitely representative of the Father's love for us. Always praying for you all!
I missed the video at first then went back to it. Loved the little squeaks baby Jack made as you were humming. What a joy to listen to John sing on Sunday. Well we have been blessed greatly by God's goodness to us through your lives. I can only imagine the desire to have him home with you but know that God knows best. Glad for the nurses that have been kind and encouraging. Oh my heart is filled with these blessings and now to continue to pray onward for the strengthening of Baby Jack's lung walls--he is breathing well but needs to grow into his body, as you said. Thank you for letting us know and to be abl…
What a sweet testimony and update as you continue to hold fast to the Anchor. How precious that little Jack has favorite hymns already! Looking forward to seeing the plans our precious Lord has for his life. I continue to pray for all that concerns little Jack and your precious family, in particular healing for his lungs and eyes and wisdom for the doctors and nurses as they provide care. God bless and keep you!
Reading other comments I see that Nathan preached on the same day that John sang Were it Not for Grace-one of my all time favorites! I'm hoping Grace has this on their website to watch!
God bless and keep you dear ones!
We are praying. John, your beautiful solo Sunday was a great blessing to me, Rose Ann. Ward was teaching at the Chinese/American church in Arcadia as he does each Sunday.