"Nearer, my God, to thee, nearer to thee! E'en though it be a cross that raiseth me, Still all my song shall be, nearer, my God, to thee; Nearer, my God, to thee, nearer to thee!"
Sarah Flower Adams (1841)
In the week since our last update Jack has made some big strides! He tolerated the slowly increasing feeds and made it to full volume. We are especially grateful for this progress because full feeds means no more PICC line! He is much more comfortable without the PICC line in his little head, and so are we! Once his team was confident he was doing well with the volume they began to fortify the milk with essential nutrients; a necessary step for all preemies. We are hopeful this fortification will accelerate his growth rate and get him back on track.
As of yesterday he was 3lbs 14oz and 15.55" long, about the 3rd percentile on the preemie scale. He is just 2oz from an important preemie milestone of weighing in at 4lbs — the point at which he may be able to maintain body temperature outside the incubator. As with all changes in the NICU this will be a process of baby steps. His nurses will begin by leaving the top of the incubator open with the radiant heater on. They'll monitor his temperature and if he responds well they'll turn off the heater. Next he would be moved to an open NICU crib. They've started swaddling him and he seems to really like being cozy in his blanket. It will be wonderful to see him out of the plexiglass enclosure and be able to dress him in NICU friendly clothes.
And there's more good news. Jack was transitioned from his ventilator to a CPAP machine. This is huge respiratory progress! The CPAP provides a small amount of pressure in addition to supplemental oxygen but Jack is doing the work of breathing himself. He has had the CPAP mask on since he was extubated so this was a relatively small change for him but a significant step toward going home. It's also a critical step for the health of his eyes. Unfortunately Jack has developed stage one Retinopathy of Prematurity (ROP) in both eyes. This is basically an overdevelopment of retinal blood vessels due to excess oxygen support. Though this is not uncommon for preemies it's definitely a concern as it can lead to blindness. Perhaps the most notable example of this is Stevie Wonder who was born premature and is blind as a result of ROP. Please pray that the disease will not progress and that he will continue to make respiratory progress. The sooner he gets off oxygen completely the more likely the ROP will correct itself and his eyes will heal without intervention.
So it seems Jack has turned a corner. In fact his medical team was confident enough in his condition to graduate him out of the Tiny Baby Unit and into a transitional room near the regular NICU. It's definitely an adjustment for us after 11 weeks of our TBU routine but we are so grateful that he is stable enough to graduate. It was a big day but also a bit startling. No one told us he had been moved so when John went to visit him in the TBU he wasn't there! Quite a few babies had been moved into the unit and every bed was needed so Jack was chosen to move out. He was the elder statesman in the unit after all at 35 weeks —oldest and wisest, of course.
Please Pray:
That Jack thrives in feeding and-growing and has no more crises.
That he can move quickly through the next phases of respiratory support and that the Lord will protect his eyes from ROP advancement.
For wisdom for the medical team regarding his inguinal hernia. He will need to have it dealt with surgically but there is a debate about when. It would be to his benefit to wait till he’s bigger and stronger but only if he’s not having discomfort or complications from it. He seems to be borderline on those concerns right now.
That everything goes smoothly with our insurance. The cost of Jack's care will be well into 7 figures by the time it's all said and done. Insurance has denied the first big claim from the hospital but we were told by our rep. that its simply part of the process and that it should be approved in the end. Still, it's pretty nerve wracking!
That the doctors will have wisdom regarding Jack's readiness to transfer closer to home. Our insurance is anxious to move him to a hospital in-network, and we would love to be home. But there would be other challenges that may make it more advantageous for Jack to stay at Loma Linda until he's discharged. We are trusting the Lord to make the right way clear to all.
It has been a fast-moving and exciting week! Thank you for your continued support and prayer. The Lord has been exceedingly kind since day one — through the good and the bad. He truly is a gracious Father who hears our prayers and draws near to us. Such grace; such comfort.
Psalm 34:1-9
I will bless the LORD at all times; his praise shall continually be in my mouth. My soul makes its boast in the LORD; let the humble hear and be glad. Oh, magnify the LORD with me, and let us exalt his name together!
I sought the LORD, and he answered me and delivered me from all my fears. Those who look to him are radiant, and their faces shall never be ashamed. This poor man cried, and the LORD heard him and saved him out of all his troubles. The angel of the LORD encamps around those who fear him, and delivers them.
Oh, taste and see that the LORD is good!
Blessed is the man who takes refuge in him! Oh, fear the LORD, you his saints, for those who fear him have no lack!