Raegan's Heart Surgery

[Guest guest]

Hi All,

I know I've posted several times before, but I don't think I ever gave a full

discription of Raegan. I have enjoyed reading about your children and I wanted

to tell you all about Raegan. Here goes..At 33 weeks of pregnancy my doctors

discovered that I had Polyhyrdramnosis and the baby had a possible heart defect.

I was told to stop working (I am a Special Education Teacher) and I went to the

doctors and the hospital 2 times a week for testing. And so starts our

story...Raegan was born on May 15, 2005 -4 weeks early. She weighed 6 lbs. She

had trouble breathing when she shut her mouth - she was taken to the NICU. At 2

days old they diagonsed her with Choanal Atresia and she was transported to

Dupont Hosptial for Children in Delaware,we live 40 minutes away outside of

Philadelphia. At 4 days old Raegan had her surgery for Bilateral Choanal

Atresia. At 3 weeks old she had a Nissen and G-tube placement, aspiration was

noted during a swallow study. She came home when she was 3 1/2 weeks

old. Raegan has bilaterial retinal coloboma with excellent vision, hearing loss

in both ears, more so on the right, however she does hear and respond to sound

and voices and her own voice. She had kidney reflux and 2 holes in her heart, an

ASD and PDA. She does not have the characteristic CHARGE ears or facial palsy.

In July a follow up swallow study showed no asspiration, Raegan began drinking

from a bottle, however once she started sucking her thumb she would not drink

from the bottle again. She now takes cereal, fruit and vegetables from a spoon,

believe me baby steps! She also is beginning to tast very small amouts of

thickened formula from an open cup. Raegan has a high arched palate. Raegan is

trying to roll over and just beginning to enjoy tummy time. Raegan now weighs 14

lbs. She has OT weekly, vision monthly and hearing bi-weekly. Raegan is going to

be admitted into the hosptial, Dupont, on Thursday, December 1 for Open Heart

Surgery to repair her ASD and PDA. She will

remain in the hospital for a week to 10 days. I also have a 2 1/2 year old

daughter, Tyler and my husband , RIck, we have been married for 6 years. As I

said earlier I was a Special Education Teacher, how ironic! I no longer work,

not with the busy lifestyle of a CHARGE baby!! Rick is in constrution. We are

very blessed wiith tons of family in the area, as well as friends and neighbors.

I am looking forward to meeting CHARGE families and getting to know them, it

would be so nice to relate to others with similar circumstances. I will be

on-line until next week and then not again for a while, as we'll be staying with

Raegan around the clock and when I do come home it will be to spend time with

Tyler. Happy Thanksgiving to all. Thanks for your support, we're lucky to have

each other.

Judy