Thursday, February 5

U of M & Amelya

Ok, so Saturday Amelya had an appt with her new doctor and things went like I had hopped they would have a year ago. See, when she was about a year I noticed her toes were slightly webbed between the second and third toes. I know it’s sad it took me that long but it’s actually really cute and not horrible and more so on one side then the other. Well, I mentioned it to the doctor and the doctor said “well do you see any problems when she walks?” No we didn’t so the doctor said “oh she’s fine.” Ok, that’s great right, and they also said they heard a heart murmur which I’ve been told is not a huge thing.

Amelya has Syndactyly. Webbing of the fingers and toes is called syndactyly. It refers to the connection of two or more fingers or toes. Webbing usually only involves a skin connection between the two areas, but in rare cases may involve the connection (fusion) of bones.

Relatively common causes:
• Down syndrome
• Hereditary syndactyly
Extremely rare causes:
• Apert syndrome
• Carpenter syndrome
• Cornelia de Lange syndrome
• Pfeiffer syndrome
• Smith-Lemli-Opitz syndrome
• Using the medication hydantoin during pregnancy (Fetal hydantoin effect)

Everything I’ve ready says it should have been noticed during the hospital stay but HA! They didn’t notice I didn’t even notice, I mean she was a miracle to me from the start we had horrible treatment from the hospital. I was told from the very beginning over the phone that Amelya was not a viable pregnancy. That was the most horrible thing I’ve ever heard. We (Brian and I) had to wait a whole week, believing that we lost the baby already. She was there; we had a beautiful tiny baby 4lbs 9oz!

Also, back to the heart murmur our new doctor thinks it’s of concern enough that she is going to be seen by a specialist for that and as well as a pediatrician at University of Michigan. He’s concerned by her lack of growth and how little she still is, and when I read about a few of the syndromes it’s hard to not fit Amelya in the category but I’m not a specialist and I’m trying really hard not to even look at them.

The worst part of it all is syndactyly is hereditary which means we’ve had 3 wonderful perfect beautiful baby girls and I think that is where it stops. I’ve read that the symptoms of this are worse in boys and who knows if we had more kids how insignificant it could be or how severe and I’m so scared to take that chance. I mean as of a few weeks ago I thought I was pregnant and I would have been so happy, although Brian does not want another child. Could I now knowing that getting pregnant means the possibility of our child not being normal, having all these crazy syndromes or even one, could I have another child. I can’t. I can’t even imagine it; I would be a mess while pregnant. Brian has always asked me why I can’t be satisfied with the children I have but it was never that I didn’t feel satisfied with them it was I wasn’t stratified with the idea or the feeling I had in my heart that we weren’t done yet.

It’s one of the hardest things I’ve ever done trying to ignore what I feel in my heart and my whole being to shut out the feelings of wanting another child. Yeah we’ve toiled around with the idea of adoption which for some reason Brian is all for. And you know when I think about all of this Brian’s not wanting to have another child he’s so admit and his willingness to adopt maybe that’s one of the biggest signs I could ever have telling me “duh Kassy your done” But it hurts so bad thinking that we obviously need to have Brian get a vasectomy or me a tubal ligation and the thought of that for either of us kills me. I’m almost in tears just writing and reading this.

Anyway, please pray for Amelya that all of her issues with syndactyly are just what she has now and her heart murmur is nothing and she will be fine. She’s such an amazing child and is so smart that I can’t imagine anything being wrong with her.


Zoey's Mommy said...

Oh Kassy, you guys are in my thoughts and prayers. Zoey has a heart murmur and it wasn't noticed until she was 15 months old. My dad had one when he was born and he grew out of it.

I understand the hesitation to have another child because of this now. I would be the same way. I feel so bad for you guys. About the getting fixed, I'd have Brian do it. It's quicker, cheaper and has a better reversal rate if you do decide to change your minds.

Keep us updated on Amelya!

Luluquack said...

Hi I have just started reading your blog, just wanted to say that my oh had a heart murmur all through out his childhood, he even had a few palpitations and they sent him to a specialist worried about what the future would hold, he was told to come back when he was a teenager and low and behold the heart murmur was gone! He is in fine health today, with no real problems. I pray for you that the same thing will happen x