"To realize the value of one month, ask a mother who has given birth to a premature Infant

I LOVED the comments on the last post. I think we could do a whole other one with EVERYONE contributing the NICU humor. It feels like dark humor but it is true!( and it gets us through a day!!)

One of the things I have wanted to discuss got pretty heated on one of the blogs I read. So I would like to take some times and just let Stacy know how much her and Helen have done to help me realize just what I can accomplish.

Me and Dallas were discussing the night that we had a nurse practitioner take us in the parent room and talk to us about continuing care of Tyler. Tyler had just been diagnosed with his grade 3 and 4 bleed. He was having a tough day. I don't remember how long in between his surgery and this conversation took place. But I remember the conversation.

During this time it seemed that the roller coaster was a little to fast for one or the other of us. Either I was having a bad day or Dallas was. This particular day it was Dallas. But this nurse practitioner took us and talked to us. She said at this point that Tyler would be the one to make the decision and we would just have to listen to him. She told us many options and that he would get sicker and the vent would be on the highest settings and the odds in his favor would go down and then we knew we what we needed to do OR he would be sick and he would get better and continue to do well and the odds in his favor would go up. Then we would know that is what we would do.

We obviously know how the odds went at this point. I am so glad we had someone take us and talk to us about the situation we were in. We were informed that the grade of the bleeds would leave us with options that may not be pretty or they could be not so bad. At the time I remember us joking about a wheelchair and we would "pimp" it out and be OK and we would take what we got. I am not so sure I was fully aware of the emotional impact of what journey we were on.

I found Stacy after a particularly trying time. She was given to me from my Twin in Missouri, and a preemie mom. Wendi has twin girls born at a much later gestation than Ty and they have not many lasting issues from their early birth. She gave me the link to Stacy. Since then I truly feel like I have found a place that "gets me."

The Preemie experiment has helped me "pull my head out of the sand" and face the reality of what I know we will have. I do still hear the resounding words of the NICU that he will catch up by 2. But... September 21st came and went and we didn't wake up "caught up!!" December 24th is coming quickly and I have faced the reality that we won't be waking up on that morning "caught up" either.

In fact I have accepted the fact that I will, at any given time, be able to handle all that I need to because there are others that are out there that have shown me that they probably won't catch up but here is what we do know.

When I saw Tyler walk independently with no issues and just GO on his own I would have paid cash for that walker. I have changed my ideas of what is "normal" or even "average." I have accepted that I will do all I can to make his life easier.

Parenting Tyler is just that, Parenting Tyler. I am parenting a Preemie. I am parenting a preemie in a world that uses the media's idea of what a preemie is. That's OK. No one wants to read the half "miracles" that come from these media reports. No one wants to read they ended up with CP, or blind or deaf from the lengths the docs went to save their live. But to truly believe that a 22, 23, 24 and 25 weeker go with no repercussions is crazy. They may be small but they are still something.

Parenting Tyler is a joy. Parenting Tyler is exhausting, it is marvelous and wonderful and emotionally draining. I don't know if it is the same for EVERY parent but I know that for me I have needed people like Stacy and Helen to tell me that it is different with a full term child but what you are doing is great and it is OK to know that there will be issues.

So....with that Prematurity is not just having a little baby. It is having a life long struggle but a joy beyond belief. It is coming to the realization that it is OK to have problems. The miracle that you have is just that. It may be the media's version of a half miracle but you know that small morsel of food or the two steps is a miracle to you.


This journey changes who you are.


You do realize the value of one month. You realize the value of a lot of things.

Thank you Stacy!!!