Comments on: Old wounds

By: Shon Roblow

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By: Anne

Anne — Mon, 22 Dec 2008 14:04:36 +0000

Thank you so much for sharing this incredible story.

The March of Dimes realizes that going home from the NICU doesn’t mean that you’ve left the experience behind. Share Your Story is an online community for past and present NICU families. You can participate in online discussions, create a blog or just make friends. Here’s the link if you’re interestd http://www.shareyourstory.org/

PS – I’m due in a couple of months. I don’t know what we’re having, but we love the name Aidan for a boy : )

By: abby

abby — Wed, 17 Dec 2008 23:52:01 +0000

I couldn’t have put it better myself. It’s hard for others–even those around us back in the day–to really understand what we went through. And hopefully the stuff that Hallie is still going through will go away someday, or at least improve. It is sad to not really have fond memories of her babyhood upon which to look and it is sad that we spent much of it hoping she’d grow up and out of babyhood because it seemed to indicate to us that she’d survive, but that’s pretty much how it is. And I think of this a lot right now as we get ready for the arrival of the Great Expectation.

By: Sarah

Sarah — Wed, 17 Dec 2008 22:09:15 +0000

Wow. I can’t believe how much of our story is similar with the pre-e. My quad screen came back funny (which I now know to be an indicator of early pre-e) and my pressures went up at 17 weeks’. A 21-week level II showed the early stages of IUGR.

Two weeks at home and Emery aspirated. Erik got him breathing.

Nope. Normie moms just don’t get it, but honestly – would we want them to?

I don’t know how we held together, either, but I’m sure glad I have people like you online who understand.

By: Lindsey

Lindsey — Mon, 15 Dec 2008 20:15:13 +0000

Lori,
I don’t think people will ever really “get it” without having been through it. What an amazing mother you are and Aidan is blessed to have you and Brandon. It was painful to read your post because I hurt for all that you’ve been through and the reality of Aidan’s infancy. But these things make the here and now so much more special than your friend will probably ever be able to appreciate in her own child. Thanks for sharing your survival story and all the triumphs you’ve made as a family.

By: Heidi

Heidi — Sun, 14 Dec 2008 02:40:40 +0000

I’m glad you shared this – thank you.

By: Stacey

Stacey — Sun, 14 Dec 2008 02:11:33 +0000

Also, while all parents have certain fears about their children, we have actually faced these fears and survived them. All parents are afraid of being unable to protect their children; our bodies have actively tried to hurt our children and as a result we’ve had to leave their full protection in someone else’s hands (the NICU). All parents are afraid their children will die, we’ve actually had to face death and tell it to shove off. All parents are afraid something will be “wrong” with their children or that they won’t be perfect – we’ve dealt with less than perfect circumstances.

Most parents are afraid to be us.

By: Christi

Christi — Sat, 13 Dec 2008 16:57:57 +0000

I came upon your website via another NICU buddy of my son’s. You put into words what we are going through right now and give me hope for a future that is not filled with worries about a monitor going off, saturations too low, aspiration, or feeding tubes. I, too was on bedrest, Mason, too is dealing with BPD (the most severe case any of the doctors have seen in years), and I, too am not enjoying infancy like I wanted to. Thank you for capturing my thoughts in your words and putting them out there for people to read and understand.

I feel lucky and blessed every day that Mason is alive, no matter what we need to do to help him breathing, but I feel robbed every day that we don’t get to experience a “normal” infancy.

By: Rhonda

Rhonda — Sat, 13 Dec 2008 06:57:28 +0000

You guys are the DEFINITION of an incredible family! I have to say that I usually avoid reading about this type of thing because it does bring back dark memories. You touched on the loneliness and I just don’t think people realize how lonely it is for someone that has a child going through scary medical problems. Everyone else is happily bouncing through life and you’re worried about o2 levels, feeding, aspiration. Calling it difficult is the understatement of the year. But this post you did is great. It makes me want to do better about expressing my feelings. It’s not as raw as it used to be because Benj has turned the corner but it’s far from over. Like you said, it will always be with us. I believe it shapes who we are.

As for your friend….she’s lucky she’ll never *truly* understand what you mean.

And as for the birthday boy? Nothing short of an incredible, amazing, glorious miracle.

By: Stacey

Stacey — Sat, 13 Dec 2008 06:50:46 +0000

I say the following with the likely unnecessary disclaimer that Ace’s journey wasn’t nearly as harrowing as Aidan’s. Okay.

Non-preemie parents REALLY don’t “get it” as far as that stuff is concerned. They think we’re all supposed to remember their first months as happiness and light and whatnot, when in our memories it was a bunch of terror and overbearing protectiveness. People who haven’t been in our shoes cannot know how difficult it was for us and how relieved we are that our children are alive. We’re not just happy they’re alive – we’re RELIEVED. They didn’t just live, they survived.

There’s a whole dynamic that goes along with being a preemie parent that people who haven’t been there just don’t get, and thank God they don’t, because I wouldn’t wish this on anyone. Let them live in their ignorant bliss and focus on your happiness with Aidan.

Of course, the girl you talked to could be living a total nightmare with her kid (still not sleeping through the night or whatnot) and her over-defensiveness could’ve been because of that.

(Also, people who can hand their kids off to people any time they think they need a break don’t get how different it is for those of us who can’t…)