Posted by: Nancy Brown | February 20, 2007

The worlds smallest baby

So there is a story going around about a baby that was and  is considered the world’s smallest baby. I have a lot of mixed emotions about what was said. On Good Morning America they said that the babies prognosis was “good.” How can they say that? Most babies born before 25 weeks have some major issues neurologically.

One of my main issues with the world and the knowledge about preemies is that people think they are just little babies. they are more than just little babies. Yes, while it is true that some preemies ( preemies in this sense meaning MICRO PREEMIES) have no issues at all. But the reality is far from that matter.  Most people see the cute little outfits in the store and think they are going to be just fine. They don’t see the real story behind the cute tinyness…

The public doesn’t see the brain bleeds, the times that your baby isn’t getting enough oxygen and he has to be bagged. They don’t see them to sick to touch or hold. They don’t see them needing a blood transfusion.  They don’t see them need eye surgery because of the oxygen that you gave them destroyed their eye sight. Or when they get old and they are in a wheelchair and we tell them we made the choice to keep them alive depsite the bleeding in their brain. 

The public doesn’t see us at home trying so hard to get them to eat food. They don’t see the therapist coming in and out to get them to do normal things. They don’t see the rounds of specialist that we see in order to live a “normal” life.

Don’t get me wrong. Given all that we were told I feel especially thankful that my life has played out the way it has. I see others that thought theirs would be different. Their baby *cooked* longer or had lower grade bleeds and their outcome was not like ours.  I feel for those who walk the road that was paved in my mind for me. I hope that others in the community see that.

As a disclaimer… I do not support the March of Dimes. They believe in research not helping families. I disagree with that totally. I think that support groups should be formed by those going through the NICU experience… Preemie or not. The NICU is hard enough. Help us be friends.

My smallest Baby 

Photobucket - Video and Image Hosting

And now… He is my best Bud… this is Tyler one year ago this month….

Photobucket - Video and Image Hosting

And this is Tyler now….

Photobucket - Video and Image Hosting

Tyler is an amzing little boy. Just a small 1 lb 11 ounces. He has been our world for almost 17 months. Would we do it again? You bet. Could the outcomes be worse? YOU BET! Do we want to do it again? Not in a million years.

To all those who have preemies who have passed on or who have other *issues* please know that there is a whole bunch of us that know your daily struggles and this is the call to the world that the prognosis may be good but there is still a long battle.

Advertisements

Responses

  1. One of Ethan’s NNP’s said, “People always see their babies laying here, and just want them to live, but they don’t see a 48 year old man, needing his diapers changed! Now how cute is that?”

    She had a point. And at that time, of course, Ethan was going to be just fine.

    *rolling eyes*

    Even though Ethan was not a premie, I think I can understand what you mean.

    People do NOT get it. And they never will, not until they go through it. It is just one of those things, they can kind of understand, but.. will never really *get*.

    I don’t like the March of Dimes, either.

    Thanks fort his post.

  2. My cousin had her daughter at 22 weeks. She’s now 4 and you’d never know she was a premie. Miraculous things do happen! 😀

  3. One of my friends is a nicu nurse and she worked for us shortly after izzy’s accident. I heard so many preemie stories from her.
    Your little blessing sure is a doll!

  4. I left you an award on my site please come and check it out.

    Thanks ,

    Angel ( Angel Mama ) ():)

  5. Stopped by to check out your Time Travel Tuesday posts and got sidetracked when I learned about your son. I had to comment.

    My youngest was born 9 weeks early weighing 2 pounds 7.3 ounces. Thank the good Lord, she has been completely healthy other than a problem gaining weight. I can so see how my path could have been different.

    My father never believed that the March of Dimes was a suitable charity to receive his donations either but until now I didn’t know why. Now, I agree with both of you. Even though we were blessed by a healthy, tiny baby, I would have given anything to have a support group to answer questions that I had and to prompt me to ask some questions that I didn’t.

    God bless you and your family!

  6. How amazing to see your baby so big and healthy now!!!

    That video of that tiny little baby brought me to tears! Hopefully the doctors will be right and she will be healthy…

  7. my first baby was 1lb 9oz and he is a healthy 8 year old now who eats me out of house and home x

  8. I want to tell you that I agree with you and everyone does need to know about premmies I have one she weighed 1 pound 10 ounces when she was born noone seen that she was going to need all that she did noone seen how it hurt me hearing news of brain bleeds and lung promblems and infections in her insides eye promblems nonthing like that all they seen was a tiny baby we are very lucky to have them when are they going to do reports on how much they will go through in there life to try to have a normall life be a kid not go to therapy go outside and play not having to worry about bacteria and outher stuff like that because any little thing can make them sick its hard going through all this noone knows how hard it is till you have been there crying yourself to sleep waitting for the phone to ring sceared you are going to get bad news happy when you get good news only to turn around and hurt you again noone talks about the pain the dreams you have when you are away from your baby for so long the pain they go through getting poked in the feet every 4 hrs the blood they get all the time the times there heart stopes all them times the times they cant breath everyone just sees little babys well i am a nic mommy and it hurts me to know that noone shows all this on tv noone tries to get this out there see how much pain it causes in marriages see how much it hurts moms and babies to go at this the it hurts so bad not knowing if your baby is going to be here 5 mins from now not knowing if your baby will ever walk talk or anything and noone can tell you it hurts ppl need to talk about them and I am glad you did i couldnt hold my baby without a doc order wow for almost 4 months i couldnt hold my lil girl they need to talk about this its the wose pain ever I want to tell you congrats on you miracle baby he is a blessing and god bless you and him


Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s

Categories

%d bloggers like this: