Friday, August 2, 2013

Day 16 - breathing

While Jonathan had started out breathing relatively well for a micro-preemie -- and by this I mean that he was breathing his own breaths above the vent and not requiring a huge amount of oxygenated air -- after his first week of life his breathing started to decline a little. He started requiring more oxygen in his air. And after his second week, it declined a little more. He began "riding the vent," meaning he was only taking the breaths forced in his lungs by the breathing machine.

J on a vent - the tube delivered forced breaths of surficant and air.
He yo-yoed between needing more oxygen, then coming down a little on his oxygen needs, then needing yet more breathing support.  They would take a blood gas test (which involved pricking his heel to draw blood, putting that in a little test tube, and then rushing it to the lab before the blood clotted) and in those tests after he had been "weaned" from the vent a bit it would too often show elevated amounts of CO2 in his blood.  To explain -- the pulse oximeter on his foot measured the amount of oxygen in his blood (think "inhale") and the heel-prick blood test measured the amount of carbon dioxide, one of the blood gases, in his blood (think "exhale").  We wanted his CO2 to be low -- to show he wasn't holding on to too much carbon dioxide -- and his oxygen as read continually by the pulse ox monitor to be in that sweet spot where preemies grow best, not too high (bad for eyes) and not too low (bad for everything else).

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?
A year ago the nurse tried to help me feel better about Jonathan's declining breath. She talked about this being just part of the NICU rollercoaster (HATE that term enough now to probably dedicate a full blog post to it later), and said that preemies seemed to either struggle with their lungs or their gut, and for him it seemed to be the lungs.  Since I still feared that gut disease that kills preemies, I figured that the lung thing wasn't that bad.

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."

But that had changed, and I was getting increasingly anxious about his breaths. Whenever I called in to check up on him (remember, I was still home recovering), I asked for his stats. I kept close track. Up or down on oxygen needs?  How are his blood gasses?  Is he getting better or worse?  It seemed mostly worse, with only tiny steps better in between.

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.


  1. Hi, I read your story because it sounded familiar to mine. my water broke at 22 weeks and my daughter was born at 23 weeks. My first girl ( I have two boys) my doctor told us she was already gone before I had her and they told us to make funeral arrangements. She is 38 days old today and ever since she had the hydrocortisone for her lungs shes been getting stronger. I was wondering if you could share any thoughts or things you did to make it go by quicker. I know she will come home one day but Im also very scared of bringing her home. If you want you can read her story at theres a lot more to her story and I wish I had chose a different dr. My name is lizzie by the way and my daughter is faith. :)

    1. Hi Lizzie! Sorry for the delayed response.

      I recommend more than anything making the NICU a new normal for now. Set a schedule for yourself so you can have time both with your boys and your precious girl. This is especially important if (like me) you end up going back to work during the NICU stay and saving the rest of your FMLA time off for when she comes home.

      Either me or my partner were at the hospital every day, sometimes multiple times a day, always for hours. It was hard not to always be there, but knowing that we WOULD be there helped us get by when we weren't around -- helped us to invest in our kids at home better and feel less guilty.

      I found that the closer I got to taking him home, the more comfortable I was with his cares. It was still a little scary -- he came home on some medical equipment and in the middle of RSV season (cold/flu season) but the more time I spent with him, the better I got at understanding his care, and the more confident I was in my ability to provide that care.

      I read your care page -- and I totally understand how inconsistent nurses can be draining. Have you talked to the hospital social worker about this? Mine was a great resource when it came to finding primary nurses. It took me months, though. But we were there many months, so it was worth it.

      Best to you on your journey!


I love to hear from readers. Please post your comment below or contact me at