Unusually sunny days - when things in the NICU start to look up.

It was a cold and dreary, snowy (!) day in my town yesterday, October 23, 2013. So let's look back a year, shall we?
An unusually sunny day

Written Oct 16, 2012 2:46pm by Laura M

The high today was a sunny 62, beautiful for mid-October.

I suppose you're not here to hear about the temperature, but it beautifully illustrates the day.

As I talked to the nurse last night, I mentioned that I might try to get in to see Jonathan before work the next morning, maybe get an extra chance to hold him, if I woke up on time.  That's all my body needed to hear and I was up every hour from 1:30 until 4:30 fearing that I'd slept in.  It's as if my eyes knew today we'd open to something amazing.  It's Christmas morning.  I really wanted to hold that little kiddo.

I got to the hospital around 5:20 a.m. and held Jonathan for an hour.  He didn't really like his cpap pushing against my shoulder and pushing the prongs out of his nose, so he went to a cradle hold for the last 20 minutes.  They gave him eye drops and fed him (through a tube still) while I held him.

At 6:45 the eye doctor came in to examine his eyes.  He talked about how fast they were healing, how unusually fast they were healing.  He talked about how the retina was completely flat.  On both sides there were no curled edges, no sign of it pulling or being removed even in the slightest..  He's now being moved to weekly instead of twice weekly eye exams.

I practically waltzed in to work.  It was like I was on a cloud.  My son will probably not have to go to Detroit.  My son probably would no go blind.  I knew the odds were in his favor, but this all seemed too good to be true.  I keep bracing myself for the next disappointment.  It can't all be THIS good, can it?

Then I got a call at 1:00.  I was at work and missed it.  It wasn't until 2 that I noticed I'd missed a call.  It was the doctor, telling me that Jonathan was off of CPAP.  I called back right away. "Is he still off CPAP?" blurted out as soon as I'd identified myself and given J's security code. Yes.  For how long?  An hour and a half now.  I checked again a minute ago (before posting this good news).  He is still off CPAP.  That's four hours with no respiratory support, no breathing tubes, no face blasted with air.  Just. normal. baby. breathing.

It was hard to work the last hour and a half.  I shredded things, paced a bit, ran errands, anything that didn't require much thinking but that could make the time go faster.  It only sort of helped.  The only reason I'm not driving to the hospital THIS MINUTE is because I am waiting for his oldest sister to get home on the bus.  I think she'll be as delighted as me.  I think we might make this into a family outing.  Let's hope he can hold strong until we get all the troops assembled.  It's not uncommon for kids to go back on some respiratory support part way in, as they get tired.

So you see, it has been a sunny day.  Unusually so.  Warm fall-scented air and bright colors.  Bright colors that in all likelihood Jonathan will get to see next year.  He won't only feel the crispy autumn leaves, he'll see the beautiful bright colors of the season. Did I mention the day is bright?

Thank you for all the prayers that you've given that have taken us out of the bad times and brought us to today, the beginning of Jonathan's 14th week of life.

The only concern right now is Jonathan's weight.  He isn't growing very fast.  He is still only 3 lbs and 3 oz.  The doctors have tried a few tricks to bulk him up, but it isn't happening.  The ostomy is part of the problem, but they don't want to reverse that yet (introduce his large intestines back into the digestive process) because he's so small.  See the catch?

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Clearly, from the pictures, we made it in on time to see him without CPAP. Everyone came, all the sisters, dad, and me. We had a HUGE celebration. We spent a lot of time in the NICU. Steve graciously let me hold Jonathan. (We both really wanted to.)  And it was so freeing, just TAKING him out of the crib, only the monitor wires and central line attached. This was a HUGE day. While I began the day holding a baby in a cradle hold because his CPAP machine made it too uncomfortable for him to do skin-to-skin care, wondering what his eyes were up to, I ended the day like this (see the last picture). Knowing his eyes had healed unusually well. I was in heaven.