Wednesday, September 4, 2013

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.


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.

Photo: And you, sir father, shall be my side kick.
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. 

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