14 January 2015

Prematurity: they might not grow out of it after all...

He was a month old, but I still would have been in my third trimester.

They'll grow out of it: that is the preemie parent mantra sung to you from the minute your tiny bundle enters the world.

That alarm? Oh, he just forgot to breathe because his heart-rate dropped too low. We just need to stimulate him a little so he remembers. Don't worry. He'll grow out of it.

Your baby turning colors becomes an alternate reality where it's all no big deal. Just rub'em a little and they'll snap out of it. They'll be like, hey body: function! and all will be right as rain.

They grow out of it by two years.

That's what they say...
and that's what they said.

You don't have to adjust his age anymore.
Phew. ...cuz that was getting confusing!

He's six months ::funny look crosses person's face:: oh, except he's actually four months adjusted. Ohhh.

We had our diagnosis appointment this afternoon. What special need would Tristan have and how would we adjust our plans to support him? I was ready for anything. I thought possible autism...maybe anxiety or OCD. I did NOT for a moment think prematurity would be the diagnosis...

and there is that numb feeling again in my heart. The icy blood pumping through my body, the body that failed. The fire that stressed me out so badly I will never know that about to burst pregnancy horrors that so many moms whine over. I still hear the silence in the OR that was filled with so many people that it should have been loud...except we were all silent and waiting for the next heartbeat to sound over the speakers. I will never forget the night my body almost killed our son.

There are other things, too. He has a speech delay and low tone and we need more specialists, appointments, therapy, additional services, follow-ups, etc, etc, etc.

But when I asked if prematurity can just last forever the answer was essentially: yes, it can have lifelong effects. There was nothing deeply remarkable about his prematurity. He only had a level one brain bleed/hemorrhage that self corrected. He really struggled with apnea and bradycardia - both come with prematurity and in most cases do pass quickly (though it seems like forever).

However...sometimes prematurity can just...last.

He's great! Wonderful, socially engaging, and creative. Smart, quick to learn. He's just young/er...and needs help with receptive language, open ended discussion, and low tone (which he HAD grown out of at one point).

Those are his official special needs.
I'll dive into paperwork next week.

Thank you to everyone who has been supportive along our journey. I appreciate you all so much.

I'm just shocked that we're coming up on his fourth birthday and after being studied on video by one of the top teams in the country we have the same label we've always had. We just thought he'd grown out of it...

Edit: I should include that preemies now come with mega-rad medical binders with a business card holder, labeled sections, pen case, carrying handle, AND over-the-shoulder padded strap!!!! SWEET. :)


  1. That age adjusting thing had to be hard! Preemie or not, extra needs or not, at it's most basic you were a new mama with a baby and that in and of itself means it's hard to keep anything straight those first few weeks, months...- especially math regarding your child. My caveat of course is that in it's own realm, maybe those markers are helpful to you in their own kind of way as you continue on. Godspeed to you all :)

  2. I think that N and T would really like each other if they met. They sound very similar. Even though N was only 3 wks early, as you know, every moment closer to baked counts. I can still hear the NICU beeping as clearly as if I was still there, his heart slowing down, the lack of ability to suckle, the g-tube....all of it. ALL. OF. IT. I also have the same feeling about my body failing me and him. Its hard to remind myself to live every day and deal with each issue as it comes so that I dont get overwhelmed. Its so easy until you walk through the doors of the place that will ask you about all of that and then place a label on your perfect baby. I totally get it. All of it. XO


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