7 weeks old (30 weeks gestational age) - Shout out to respiratory therapists!

The story of Jonathan a year ago (at exactly 7 weeks old, or a gestational age of 30 weeks):

J with a Labor Day duck & his duck for size comparison. 7 wks.

Edema.  He'd shed a little water weight, they'd wean his kidney medication a little, then he'd gain water weight. He got up to somewhere around 3 lbs 13 oz. When he finally shed all that water, he was back down to 2 lbs 5 oz.  Can you imagine retaining that much extra fluid?

He was so puffed up that they couldn't put in a central line.  But he'd been on IVs for a good month and a half, and with that small body, that meant he was running out of veins that could be poked.

And of course, there was the strain all this was taking on his vital organs. His lungs, his kidney, his heart. All were at risk because of the water retention. Loose water weight too fast and the heart suffers from blood pressure changes. Processing extra water weight taxes the kidneys. Too much water retention leads to poorer lung function.

The doctors and nurses were amazing. Today, though, I'd like to praise respiratory therapists. These are the folks that (in our hospital at least) come around in green scrubs and make you breath right, be it through tubes forced down your throat or by administering nebulizer treatments.

I found green scrubs at Build-A-Bear around Halloween last year. I joked that I should buy them for Jonathan for his Halloween costume, because what could be scarier to a NICU baby than a respiratory therapist?  Those were the folks who regularly came and suctioned out his lungs and poked and prodded him.

And saved his life. Over and over again.

One of his respiratory therapists was a designated problem solver. If the baby's breathing declined rapidly, she wasn't content to say it was decreased lung function. She would twist knobs, re-position breathing tubes, suction and re-suction until she found what the problem was, until the baby started breathing right again. I saw her spend a half an hour with Jonathan, only to come back an hour later and make sure her fix had really worked.

People like that amazed me.

And a year ago, that's what Jonathan needed. A respiratory therapist to trouble-shoot.  Read what happened, as told by (dad) Steve on our care page:

Written September 3, 2012 8:58am by Steve

The last few days have been a respiratory adventure for J.  About two days ago, quite suddenly, he needed much higher oxygen and lung pressure to keep stable, and that seemed to continue for a day or so.  Two nights ago, his respiratory therapist decided she was going to go all out trying to clear out his lungs and that seemed to help a lot.  He quickly dropped from having to breathe 80 to 100% oxygen to getting by on normal air 21% oxygen.  

Over the last 12 hours or so, his vent settings have improved considerably, though the doctors are still worried about his lungs and are monitoring them closely.

Over the last day, J has also gained weight, which is not good.  He should be losing weight as the water he has been retaining comes off.  So now that is the biggest concern in the short term.  His swelling/water retention is preventing them from being able to put in a PIC line like they want to, his IV's keep going bad, and the retained water is bad for his lungs.

All said though, we are happy that he has been more alert over the last day, and acting more like himself. 

THANK YOU, respiratory therapists!

I may have made fun of you and your green scrubs, but you folks are amazing.

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These days (a year later):\

Jonathan is really really proud of himself for his ability to roll around to wherever he wants to go on the carpet. He loves exploring, grabbing his toes, babbling, and tickles.  He's very pleased that he moved from his blanket to my feet while I wrote this blog. He just wanted you to know that. He says "ahhhbwaahhhh aahiii," which is baby speak for "I'm amazing."

Steve looked at him a few days ago and said, "You know, buddy, I start to worry about you -- whether you'll ever play with your toes, or roll over, or push yourself up on tummy time, or sit -- and then, just like that, you do it, like 'You didn't need to worry dad.'"

We're still a bit amazed at Jonathan. Steve asked last night if we thought it would ever wear off, the novelty of him, the miracle of his existence. Some days it does. He's just a baby. We happily choose to forget the NICU.  And then it hits us -- this baby talks. He eats. He might some day walk. He sees. A year ago, we just prayed he'd survive. We assumed he might not eat until two or three years old, we were prepared for him to never walk and possibly never talk.  Had he been born before the invention of laser eye surgery, he would be legally blind now (more on that story later this month).  There's something amazing in all this.

1 yr & 7 wks old
(almost 14 months)

It's the start of a new school year, which means he gets a new "teacher."  The state we're in offers special education for 0-21. He's considered a special education child because of his early birth. He'll be enrolled in special classes until two or three. This helps him get the services he needs so that he can catch up to his actual age.  He's thirteen, almost fourteen months and still not crawling and barely sitting. His "teacher" (a physical therapist) will come to our home once a week.

He's not dealing with many other issues now. He's still ridiculously small.  Nothing like his 3 lb (or 2 lb + water weight) self from last year, but still tiny even for his adjusted age. The weather is starting to turn a little, so we put him in the same comfy sleeper (size 0-3 months) that he wore last spring.  Yep. He still fits.   Oh, and there's a problem with all this smallness, too.  He's still in size 1 shoes for babies. And he's learning to stand and walk. Do you know what size one shoes for babies are for? Decoration only. Finding ones that he can walk in that are ALSO as skinny as his little feet has proved a challenge. It's fine now, while he can still walk in booties and socks, but come winter we'll have a new challenge.

Oh well, we'll take it. We worry, all preemie parents do, but we spend more time just enjoying this kid for who he is -- for all he is. 

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.

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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.