Wednesday, August 7, 2013

Day 20 - A matter of heart.

A year ago we'd discovered that Jonathan's PDA, which had initially responded well to the drug therapy but not entirely closed, had now reopened.

The doctors were split about what to do. About half the team suggested letting him grow bigger and then assessing the need to repair. Bigger babies have an easier time with surgeries. The other half worried that not repairing it would compromise his blood flow and make it harder to sustain his life.

We were glad for a team approach to medicine. So glad.

Looking back I see that, for one, it meant our doctor would not try to determine Jonathan's worth and pressure us to make decisions we weren't comfortable with. Not that I had that on my mind at the time, nor did he ever pressure us in this way, but I watched this documentary called "Little Man" a long time after J's birth, and the doctor in THAT film was so horrid about what the parents should do (or not do) for their son. I was so glad that my neonatoligsts weren't like that doctor.

A year ago today I didn't really know what Jonathan's primary doctor was like. I had pictures of him resuscitating my son, pictures that Steve had hastily snapped while trying to remain unobtrusive while I was being sewn up after surgery, but I had little data about him. Oh, I knew a little. When the social worker took me to pick out a quilt for Jonathan, donated by sweet sewing souls in our area, she mentioned that he had a sense of humor. And liked trains and cars. I was sure to pick a quilt with trains and cars. But that's about it.

He hadn't really been present since Jonathan's birth. It was mostly due to poor timing. He'd gone on vacation three or four days after J's birth, and hadn't returned. We hadn't really seen him before he left, either, though, other than at delivery and a glimpse a day later of him charting outside our room. He never came in. Not while we were there. I wondered at his distance. Did he purposefully remain away those first few days before vacation because he knew the likelihood of J's sustained life after his time away was slim?  He had seen a lot of babies not make it. Did he not want us to ask if our son would live? We knew better. But he didn't know that.

The team approach meant J didn't have one doctor, he had six or seven. And many of them were present (and not on vacation. They made a point to come in and warmly greet us and comment on his size or personality or preferences. They seemed to care.

With a split team, though, we weren't going to do anything about Jonathan's heart. When the situation presented itself better, they would then make a decision about closed heart surgery to fix the PDA. Maybe new information days or weeks later would tip the scale. For the time, though, all we knew was that his heart wasn't working as well as it could. Maybe that's part of why his lungs weren't working as well, too.

But he was still alive.


Not sure I'm happy with this, mom
TODAY - 2013

J finally got to meet his other male cousin, JB, today.  JB is a four year old who has been praying for him since birth.  Who can blame little JB for praying?  I mean, he has EIGHT other cousins, all girls. In some sense, it probably felt like J was his only chance of playing guy games.  That's at least a year off yet, but it'll come.

J himself was crabby yesterday and today. Unusually so.  He smiled once for his uncle, but then threw up on him a minute later. So I'm not sure what that smile REALLY meant.

This afternoon he cut his first tooth. Teeth, actually.  Two ragged edges poking up from his lower jaw.

No wonder the poor guy was crabby.
Okay, happy now!

After that, he was all smiles and showed off for his grandparents. He rolled all over the floor, grabbed his feet, passed teething biscuits from one hand to the other and then stuffed them in his face (gotta use those teeth after all), and all in all charmed everyone he met.
Tonight before blogging, I read this article.

I've written about our choice to resuscitate and the difficult decision that can be, so you can probably guess my response.  I thought, "Wow, she makes the temporary seem so grim."

She sees only the smallest part of a portrait. She needs to re-frame the image and see a larger picture. Does she not remember that this is life we are talking about? Potential for life -- good, full life?

Yes, parents must know that there may be disabilities. Yes, we SHOULD be well-informed. But this article is so horrific. It forgets about the hope each day of life brings. It almost makes it sound like parents aren't ready and would make a different decision if they really understood.

We weren't ready. No. Who could be?  But we were well informed. Now, a year later, we would not have changed our minds with any more information. You'll see, if you keep reading or if you know us, it wasn't a walk in a park of a year, either.

J won't remember his pricks or the pain he went through. How much do you remember of your first three to five months of life?  J's dad was a preemie, too (for unrelated reasons) and has some similar scars. He doesn't remember getting any of them. He carried his prematurity through his early childhood (and in some ways into adulthood), but he still enjoyed being a kid. He's a doctor now. Dependent on a med or two as a  yes, but he's had a really good life.
The PT told mommy I had to experience different textures.
I'm like a scientist, figuring out the world.

She forgets that in this article, that the pain is temporary. The disabilities, if they come, may continue for years or a life time, but the pain doesn't usually last. She forgets or doesn't know  that the disabled among us are not without great worth.

If all goes well some day that micro preemie will be a four year old, sitting in the sun on a beach, enjoying the breeze. He might even be doing so with eyes that see and feet that run and arms that swim. But even if not, he'll be alive, and the same breeze that floats across my brow will hit his. And he may giggle. And the fight - it is hard, yes. She describes me and my son perfectly. Brain bleeds (only one, and small), bowel perforation, yep, post traumatic stress, yes. All of that. But the fight - the fight is worth it.

We think this, and we're only 7.5 months out of the NICU. Scars fade. Hope remains.

Thanks, docs, for giving the choice to us.
Chil'axing, with arms flying like only preemies can!
I love having my arms out to the side.
Mr. Jason, the physical therapist, says it's a preemie thing.

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