Comments on: Eyes Wide Shut

By: Laura

Laura — Mon, 07 Dec 2009 05:45:21 +0000

Yeah, 12 years later for my 34 week, low apgar child and the diagnosis keep rolling in. Yes, he walks, talks, and breathes, but no he is not “normal” he will never be “normal”, and it pisses me off to think of the NICU nurse who watched us put him in his car seat and said ” you’ve got a normal, full term baby now! Just relax and enjoy him!” Uhm, well, starting with his first at home aepnic incident, on up the the latest IEP meeting, I do enjoy him and he is not a typical kid.He never will be. I am grateful that he lived, but angry that it had to be such a mystery, to me and to my fellow preemie parents. I’m glad to hear there are NICU nurses who get it.

By: paula

paula — Fri, 20 Nov 2009 15:40:10 +0000

My preemie (IUGR 29 1/2 weeks) is almost 9 and this post *still* resonated with me. Thank you for (in addition to doing this tough job in the first place!) remembering the parents and for pointing out the the battle does not end at discharge. Our DD passed her followup screening at 9 months of age, so we were told she would be fine (who knew these doctors could predict the future?!). As it turns out, DD is doing great in school, but does carry “scars” that *daily* impact how we have to parent her.

By: Lisa

Lisa — Thu, 19 Nov 2009 02:09:49 +0000

I’ve had former premies as students; the parents had been taught to expect their kids to catch up in 10 years, not 2.

By: enjoybirth

enjoybirth — Wed, 18 Nov 2009 05:24:38 +0000

This article, which I read many years ago, not long after my son got out of the NICU, really captured my experience and feelings. https://pantherfile.uwm.edu/hynan/www/MINNAEP.html

The work you do is amazing and important! Yes, let’s all fight for preemies!

By: Loralai

Loralai — Wed, 18 Nov 2009 01:43:56 +0000

If there is 1 thing I would like to see done away with to help with the myths, it’s the “catch up by age 2″ mantra that doctors, nurses and so many other repeat. This is an extreme disservice to preemie parent’s expectations, the general public and even some doctors. With the advances in medicine today, and the fact that younger and younger babies are being saved… a 23-28 weeks is NOT going to “catch up by age 2.” While there are miracle stories out there, the sad reality is that your child is and always will be a preemie. They don’t outgrow it. The parents are forced to feel like a failure when this popular mantra does not hold true. And they wonder why at age 3, 4, school age and beyond they are still seeing doctors, nurses, therapists for problems ranging from behavioral, vision, physical, hearing, lungs, and much more. Let’s take the first step by telling the truth about these extremely premature children and stop with expectations that set a parent and a child up to fail.

By: MoDLin

MoDLin — Tue, 17 Nov 2009 15:29:44 +0000

Thank you for all the great work you do a a NICU nurse. You’re right about most of us being naive about the trials and tribulations a family with a preemie goes through. I work for the March of Dimes, but I didn’t truly “get it” until my grandson was born a preemie. Thank you for your ongoing work and for reminding all of us to fight for preemies.

By: Cassandra

Cassandra — Tue, 17 Nov 2009 13:33:27 +0000

God bless you. I don’t say it often, but I truly mean this. I am the mom of a former 27 weeker (who is now 2). Thank you for all you do for our babies, but even more so, thank you for thinking of the parents of those babies. Too many NICU workers forget about us. We are grateful to have you and thank you for remembering. Your insight of how NICU discharge in many ways is a new beginning is right on target.

Thank you. It’s all I can say.

By: prem2pram

prem2pram — Tue, 17 Nov 2009 08:57:11 +0000

We are fighting for premature babies by stocking the Toddler Dictionary which is in aid of bliss the charity for babies born too soon, too small and too sick.

The Toddler’s Dictionary is a great booklet in support of Bliss – the charity for premature babies. It makes a perfect stocking filler for Christmas and is packed with hundreds of tots’ words (including translations)

Please visit our blog http://prem2pram.wordpress.com/2009/11/14/a-toddler%E2%80%99s-dictionary-in-support-of-bliss/ to read more about the Toddler Dictionary