|J on a vent - the tube delivered forced breaths of surficant and air.|
Point of all this being, he wasn't returning air as well as he should have been. His carbon dioxide levels were too high, so even if his oxygen needs came down, the machine hooked to him had to be tweaked, made more invasive (and thus more likely to do some damage to the lungs), in order to keep him alive.
I read this article today, about the short life of J.F.K's son, Patrick, almost exactly 50 years ago. He was born five and a half weeks premature at just over 4.5 lbs. (Jonathan didn't hit that weight until he was four months old.) I realized reading Patrick's story just how far we've come in less than a lifetime. Patrick's breathing, too, was labored and difficult. Like Jonathan, he suffered from respiratory distress syndrome (RDS). But unlike Jonathan, he didn't have surfacant or high-tech breathing machines. Despite the best doctors, he lived less than two days. Had he been born today, his chances of survival would have been 95%.
It is a sobering thought. It fills me with such sorrow for those (and the parents of those) who didn't make it, and with such gratitude that the medical profession put so much effort into improving neonatal care. Thank you, doctors. Thank you.
|Good grief. Did they have to put this much tape on me?|
As long as he still had margins, as long as they could still do more to keep him breathing, this was okay. Maybe he'd be on aggressive lung therapies or steroids for lung development. Maybe for life. As long as he had life, this was okay. With him requiring more and more oxygen, and breathing less and less on his own, however, I was getting a bit nervous.
His doctor told me to pray for supple lungs.
And then I remembered a note I'd gotten from a friend a bit over a week before. In the note, she said she was praying for his lungs. At the time I thought, "why lungs?" At the time I thought, "they just took him off his food because they're afraid he's not tolerating it. I'm more nervous about his belly."
I realized my friend was right to pray for his lungs. His belly was doing fine. Once his system realized what food was, he ate well. For nearly the past week he never had any breast milk left in his tummy when it was time for the next feeding. They pull back on the feeding tube, pulling stomach contents up, and count how much milk is left in the stomach before each feed. For him, they only got air.
He was doing so well that I almost wished they'd give him more milk, to help him grow, but I knew that (like everything else in the NICU), things had to be carefully regulated. We even weighed his diapers. I've heard many NICU moms and dads go home and wonder if they should still weigh diapers, it seems so odd to us after months of careful regulation to just drop the diaper in the waste bin.
But back to my friend. She was right. He needed prayer for his lungs, not his gut. He needed soft, supple lungs that could take in and return the oxygen and carbon dioxide in his blood. How glad I was for the Spirit's promptings, waking up friends in the middle of the night to carry vigil for my fragile son, and leading them when we didn't how to pray.
Looking back it's hard to remember all the difficulties he had with breathing. At the same time, I am so grateful, so thankful, so amazed.
Today, 2013: Just in case you're curious, as anticipated, we do have to give Jonathan steroid treatments for his lungs. It's not nearly as much support as we'd feared, though. He even left the NICU without a referral to a pulmonologist. That didn't last more than a few months, though, and he began lung treatment three months after he came home from the NICU, It appeared he wasn't growing out of his tachypnea (fast breathing, like hyperventalation without the passing out or loss of oxygen to the brain).
When he first went on the breathing treatment we used a nebulizer. It took about 15 to 20 minutes every morning and night to administer the drugs. When he responded well to that, they changed the drug so that it could be given with an inhaler instead. Now he gets two puffs morning and night. It takes almost no time.
Even though it takes no time, the steroid treatment has become an essential part of his bedtime routine. When he's really tired, he won't take his full bottle until we've given him his inhaler. It's not like it's fast acting, it doesn't help him take his bottle better or anything short-term. The best I can figure is that he needs this sign that it's bedtime, that it's safe to go to sleep drinking the milk. Then he can relax and doze off. For most babies that sign is their evening bath or cuddle time with their mom or dad. For Jonathan, it's his inhaler.
Thank you, modern medicine.