Wednesday, June 10, 2009

Evlauation tomorrow

The boys have their evaluation tomorrow with the MRDD/Help me Grow people. I am excited and nervous to hear what their thoughts are. Summy has come to the forefront in my concern list because of some of his sensory issues. Sometimes I feel like I can't get through to him, or understand him. I am so scared that there is more "wrong" with him then we know about. I am so scared that he'll have trouble down the road making friends, or being social, or just connecting with others.

It's not often I voice my fears and frustrations, but my friend Stacy really has me thinking. I am angry that I was told my preemies would "catch up" by 2! I am angry at myself for not being able to carry my boys longer. And I'm even more angry that she had to stop blogging because she is speaking out about it! She's championed informing preemie parents with some really eye opening scientific data that shows just what prematurity can look like: down to the difference in preemie brains. She's also afraid now to post because of backlash from medical professionals, and possibly parents who don't really want to hear the truth. What do I tell my mom when she says "yes, but they'll grow up and be just fine, normal." Will they? Honestly? Do we even understand that "normal" might ever be for a preemie?

Would Summy being full term have prevented this? I ask myself that every day. Will therapy work? Will they ever "catch up" or will it just be less noticeable. Did my choice to undergo infertility treatments, more specifically IUI, contriubute to the possibility of prematurity? How is it possible I longed for a baby for SO LONG and in my own selfishness of trying to get pregnant, could have put them at risk? Would my placenta have abrupted either way?

I'd love to hear your thoughts on this, readers. Prematurity is on the rise. It's not going away. I wish I knew what to do about it.


Jenn Murray said...

just wanted to offer a virtual hug!!!

SaraBelle said...

Hugs from me too! I struggle as well. My twins were not from IF treatments and were still premature. I am kicking myself more for being selfish (and in denial) when they were smaller for not doing PT / HMG. Now I wonder if we had been more aggressive earlier on if B would be walking by now (or at least crawling). But there is a HUGE part of me, too, that believes no matter how much intervention occurs, a child will learn what he/she needs to when they are ready. We've seen that with B, too. So I try not to think about it and focus on what they can do and will hopefully do someday. Good luck with the eval!

Beautiful Mess said...

Hey hon,
Thanks for your comment on my blog. What happened to Dr. Tiller is a shame, just isn't right. If you want blog design advice, go to Geek By Marriage. She's the one who did my site. She's AWESOME!

I'm sorry your so worried about your beautiful boys. It's really too bad that people can't write about what they want and not get harassed because of it.

Both my pregnancies were full term, thanks to a lot of drugs and a lot of bed rest. It's really hard to look in to the future and see your children struggle. Or the possibility of it. I wish we could do something right NOW to take away all that heartache for them. All we can do is be the best mommy we know how to bed. And you're doing a great job! Blaming yourself isn't going to "fix" anything. Just love on those two beautiful boys and know that you did and are doing everything to help them have a great future.
Keep up the GREAT work!

Following Him said...

Wish I could pop out of the screen and give you a hug. The boys' evaluation will go fine and if they still need a little help here and there, they will get it. THIS IS NOT YOUR FAULT!!!

Annie said...

Just believe and trust in God. You have wonderful kids and if they were premmies that's not your fault. My girls are premmies.

Everything is going to be fine, don't worry.


Leanne said...

I don't comment very often, but have very very often struggled with the thoughts you express on this post. I think I've finally come to a point where I have realized that my Lucas is a preemie (28 weeks), always will be, and that's just who he is. I love him so much the way he is, gross motor issues/sensory issues and all, and I know that you feel the same way about your boys. I think I got tired of worrying so much about it and have come to a place of acceptance. I can't change the past, I can't change that my body failed him. He's still our precious Lucas, I'll do everything I can for him and I will just love him for exactly who he is.

Just my thoughts, scattered as they are.

Becky @ Our Sweet Peas said...

Sorry that you are feeling this way. I went through a lot of this when the boys were born however I am at a point now where I realize clomid (that is what we used) or not, God had to still allow me to get pregnant. I firmly believe that He is in control and that doesn't mean our children will be the same as full-term babies but it does mean that is what God planned for them.

This can be a hard pill to swallow especially when there are delays and issues surrounding their prematurity but I say all this so that you will come to realize (maybe not now but eventually) that you didn't DO this to them. You are an awesome mom and any preemie is blessed to have a mom like you "going to bat" for them. God gives preemies to the strong and that has proven true for you.

I pray that his evaluation goes well and that this comment comes across as I intended. I know sometimes it sound right in my head and then it looks different on paper. :)


A Mom in Jacksonville, FL said...

HUGS to you!

Hoping all went well with the evaluation today.

If you get the chance, I tagged you in a meme on my blog. If not, no worries! :)

Sarah Dee said...

lots and lots of hugs!!! There is no reason to be angry at yourself. You did the best for your boys. You did a great job carrying them for 32 weeks, and you've done a wonderful job caring for them since they were born. You have done so many things.

I would love to talk to talk and get your 2 cents and compare mine.

I think it's total BS to tell a parent that a premie baby WILL catch up by a certian age. There is really no clue, the hope I guess would be by age 2. We don't know those things, and I think its wrong to tell a parent everything will be fine by a certain age. It makes me mad as a professional that parents are being told that, not the other way around.

I hope that the evaluation goes well tomorrow. By that I mean that your boys show what they are truly able and not able to do and they are able to get the help they need-if they need it.

Oh, and everyone has sensory issues.

crrv said...

I haven't had the chance to read the other blog yet but wanted to say that maybe the issues he is having isn't related to being premature. There are many kids out there that have these problems and it's not because they were premature. After therapy, these kids go on to become very successful. The most important thing to remember as a parent is that we cannot change what has happened in the past, we can only change what happens in the future. There is nothing you could have done to prevent this. You love your boys so much, now it's time to love yourself just as much.

Manday said...

I feel like I am not qualified to speak to most of the questions you put forth, but I will say one thing - As to "How is it possible I longed for a baby for SO LONG and in my own selfishness of trying to get pregnant, could have put them at risk?", you shouldn't think about it that way. Sumner and Jack exist because you went through infertility treatment. If you had not gotten pregnant, they would not exist, and if you had gotten pregnant naturally they would be different people. Whatever issues they have, their existence is better than no existence. They smile, they have fun, they have life. Don't think of yourself as selfish for creating that ever.

Talina said...

I don't think it is fair for you to look back and judge yourself. There is no real way to know for sure what would or wouldn't have changed the outcome. Try to look on the bright side, you have your babies (many others don't).

All you can do is research, learn and formulate opinions for the future. What will you do differently if you have more children? What would you tell other ladies who don't know what you now know?

It is great that you are speaking out about all this, it educates us all and allows you to connect with others going through the same thing. Hugs to you mama, you are a good mom and are doing the best you can.

I found your blog via blogher ads, just got added to the network. Enjoyed reading your post.