AAP, doctors, nurses, EI folks ... whoever is "in charge" of deciding that 2 years old is some magic age where all of a sudden preemies gain back the weeks and months that they missed out in the womb, please, please just stop it. I get that you want to throw away that adjusted growth chart and stop turning a few pages back in that tidy little infant development booklet that we got at our first pediatrician appointment, BUT..
You are setting up unrealistic expectations.
You are creating an arbitrary deadline on prematurity and all of us in the prematurity business know that there is no deadline for the implications of an early birth.
You are also perpetuating the understanding of the general population that prematurity is just something that can be grown out of.
Virginia will turn two in 2 weeks. She has made steady progress since she was discharged from the NICU at 4 months old. In the past 4-5 months she has made some tremendous progress. Amazing progress really... she is really amazing. Yet she does not look like, talk like, walk/run like, or play like a two year old. And you know what? That is A-OK! She shouldn't be two years old in 2 weeks, she should be two years old at the beginning of February. She missed out on nearly 4 months in the warm, quiet, nourishing womb and I think we can give her a pass on catching up to her full term peers before she even reaches pre-school.
We will keep on keeping on, knowing that there is nothing magic about two other than a pink and gold glitter party ;) . I know there will be a day that I won't mentally adjust her age but its not now and it wont be at the same time that other micro-preemie parents stop mentally adjusting for those months lost in the loud and unnatural world of the NICU.
I know I am not alone in feeling mislead, frustrated and annoyed by the promise of "catching up by two." Many others have written about this, both from a parent and physician perspective. Please share other posts on this topic in the comments.
There is no magic age for catching up, not catching up, receiving diagnoses, or understanding long term outcomes. These are moving targets to understanding where the cards of prematurity will fall and working to make the best of the hand we are dealt.
I think this myth was created back when the preemies who survived were the later-term babies, you know, 30+ weekers. And for them, it was probably mostly true. For micropreemies, in my experience, it is very rare. My 27-weeker is now 4. Is she caught up? Mostly. She has had health issues that held back her growth, and hindered socialization. She is in a regular Pre-K classroom and doing well.
ReplyDeleteI hear that the kindergarten/ early grade school is a more realistic catch up age for most of these early preemies. Love hearing that your daughter is doing well in a mainstream pre-k room!
DeleteHmm...even for my 28-weeker (938 grams, 12.5 inches), who is not a micro...catch-up is still elusive. And I finally, 3 years into this journey, no longer chase after it. Don't get me wrong, we are giving Jack all the love, support and services he needs to be the best Jack he can be...but I really try not to compare him to other kids his age. I still mentally adjust for gestation (28 weeks), length of NICU stay (112 days), diagnoses (BPD, etc)...but, if there's just ONE THING I can do with my blog, the Foundation for Prematurity, as a member of Preemie Parent Alliance, and as the co-chair of my NICU Advisory Council - I hope to end the perpetuation of this "theory!" It's hard on parents and creates false (and sometimes unreachable) expectations for our kiddos who have already been pushed hard enough during the NICU and beyond. I've blogged often about it, but here are two that I wrote just after Jack turned two (adjusted).
ReplyDeletehttp://jackryansjourney.blogspot.com/2012/11/do-preemie-parents-catch-up-by-2.html
http://jackryansjourney.blogspot.com/2012/11/normal-0-false-false-false-en-us-x-none.html
I was hoping that you would link your posts Heather! I knew I had read similar themes on your blog before but couldn't find the posts. You guys are just about a year ahead of us so I find alot of hope and healing in what you write... gives me a little glimpse of the future.
DeleteI totally agree... one reason that I have gotten involved with the march of dimes and our NICU family advisory council is to help bridge the gap between the NICU and home/specialist/EI life. It seems like the NICU is out of touch with what happens after discharge and specialists/EI often don't have a clear understanding of how the NICU shaped you and your child.
Foundation for Prematurity sounds like such an amazing organization and serving a similar mission to what The Tiny Miracles Foundation does here in Fairfield County CT. Have you heard of them?
Amen!
ReplyDeleteAmen sister! Thanks for putting this into words...and giving me some ideas on what our NICU advisory can focus on:)
ReplyDeleteRachel