2 Samuel 22:5, 31 - The waves of death encompassed me, the torrents of destruction assailed me. . . . This God — his way is perfect.
Friends, thank you for your faithful prayers and generous support. Seven weeks into this journey we are so grateful for all of you who have linked arms with us and remain invested in Jack’s story. The Lord is rewarding your prayers.
Although Jack is still getting help from the ventilator via a CPAP mask, we are pleased to report that he is still extubated after two weeks! The first week was very rough for him and us. Hour-by-hour the reports from his medical team were positive then negative. At one point we were being told that he was declining and re-intubation was likely. But week two has been much better with incremental progress each day. We are so thankful!
Jack's team of primary nurses are an amazing gift to us. The way they care for Jack is professionally excellent but also highly personalized, taking even his personality and preferences into account. Their advocacy and vigilance are a big reason why Jack hasn't been re-intubated. It was nurse Amy who took the time to analyze the pattern of Jack’s cardiac events occurring the week after his extubation, deducing the cause and adjusting his care accordingly. That proved to be a major turning point and a wonderful answer to prayer. What he needs now is rest without crises to heal, grow and mature.
Though Jack's systems are generally where they should be at this point, the challenges are that a 31-week respiratory system is not yet ready for air, the digestive system is not yet ready for milk, the eyes are not yet ready to see, and the brain is not yet ready for processing the world. Jack had his first eye exam this week and although the exam itself was painful for him the results show no evidence of disease (Retinopathy of Prematurity or R.O.P.) thus far! The greatest concern for now is his lungs and there has been encouraging progress this week thanks to his diligent NICU team.
Our mighty, tiny fighter has grown, ounce by precious ounce, to around 2lbs 6oz. His skin is maturing and starting to look more like a newborn. His hair is growing — he even has little bushy eyebrows! He loves to grasp our fingers and holds hands with his mommy every day. He especially loves to be held and both John and I have been able to do that for 2-3 hours almost every day this week.
Lungs - At 31 weeks gestation Jack's lungs are not fully formed and the 5 weeks of intubation have damaged his very delicate bronchial fibers. As a result it's likely he will struggle with some form of chronic lung disease until he outgrows the scar tissue. He's getting stronger every day but another crisis will mean re-intubation and further setback. Please pray his lungs are able to heal and grow.
Eyes - A high percentage of premies have lifelong complications with their eyes and the earlier they are born the higher the chances. We are so grateful that his first eye exam results are good. Please pray that the Lord will continue to protect his little eyes.
Feedings - Jack needs calories to grow, but the combination of forced air in his tummy from the CPAP and milk from his feedings makes it very difficult for his lungs to expand. This has been a big contributor to his cardiac events (or Bradys). You know that feeling of being overly full after eating, to the point where it's almost hard to take a deep breath? Imagine having that sensation constantly. But Jack desperately needs nourishment to get better. Please pray that we can steadily increase his feedings so that he is able to get on track and grow.
This 150 year-old hymn has been running through my head recently as I sit with Jack. Truly the Lord's mercies are new every morning and present at every hour.
Day by day and with each passing moment, Strength I find to meet my trials here; Trusting in my Father's wise bestowment, I've no cause for worry or for fear. He whose heart is kind beyond all measure Gives unto each day what He deems best-- Lovingly, its part of pain and pleasure, Mingling toil with peace and rest.
Ev'ry day the Lord Himself is near me With a special mercy for each hour; All my cares He fain would bear, and cheer me, He whose name is Counselor and Pow'r. The protection of His child and treasure Is a charge that on Himself He laid; "As thy days, thy strength shall be in measure," This the pledge to me He made.
Help me then in eve'ry tribulation So to trust Thy promises, O Lord, That I lose not faith's sweet consolation Offered me within Thy holy Word. Help me, Lord, when toil and trouble meeting, E'er to take, as from a father's hand, One by one, the days, the moments fleeting, Till I reach the promised land.
Lyrics: Lina Sandell; Translated by A. L. Skoog
Music: Oscar Ahnfeldt