Friday, January 11, 2008

The rest of the story Part 7

Well we spent 14 days in the Nicu before they let us take Rylie home. The cardiologist said she had a opening in one of the chambers of her heart, but he thought it would close on its own, and it did. She had a few follow ups with the cardiologist and an echo then she was in the clear. She past her hearing test at the hospital, but later failed it. She eventually had ear tubes put in and that did the trick. She was also diagnosed w/ an eye problem(THIS IS SUCH A LONG STORY IT DESERVES ITS OWN POST. LETS JUST SAY A MIRACLE OCCURRED, AND SO FAR TO DATE RYLIE'S EYESIGHT HAS BEEN PERFECT). She also had sleep apnea. We had to learn infant CPR and she was brought home on a monitor.(grrr I hated that thing to no end!)

One thing that really made me sad was that Karlie was not allowed to go into the Nicu. No children under 12 years old! I begged the nurses and doctors everyday, but these were the rules and it broke my heart. On the day Rylie was discharged, we left the hospital and drove right to Karlie's preschool. Oh, the joy of finally seeing her hold her sister.

Early intervention started at home right away and there were tons of doctors appointments that first year.

If you are a family member, friend or blog friend then you already know how much we love Rylie. She has brought so much JOY into our lives. The sadness we felt in the early days of Rylie's life have disappeared. No, It is not easy raising a child with Down syndrome. We have had our struggles and especially now that she is school age there will be a lot of challenges. But we have gotten this far and I am excited to see what the future holds for Rylie.


Melanie said...

Thanks for your story....I have a question...Did Riley have sleep apnea as an infant?? How did you find out she had it??? I am worried that Logan may have it.

RK said...

Wow, I miss a few days and come back to this story. Much of it sounds so familiar. I kept thinking they would be wrong. And I just kept thinking this would be the last straw in my marriage that had suffered so desperately in the months before. I just knew that we wouldn't be able to handle this new trial.

I've obviously come to see what a blessing she is, and it's so weird to look back on how devastated I was.

Rylie is just beautiful, and it's so encouraging to hear your story.

Shannon @ Gabi's World said...

Wow! Rylie today looks so much like Karlie in this picture. You can sure tell they are sisters.

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