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!"