Wednesday, January 27, 2010


Claire was released from the hospital on Monday and we made it home by late afternoon. She wasn't too crazy about the car seat as she really prefers to be swaddled, but she did well on the long drive home. It was so wonderful to sleep in our own bed again!

Claire is settling in well. She is still on her NICU feed schedule and that has helped me organize myself a little. We went to our family doctor today so he could meet her and her weight was up again. 5 lb, 12 oz! The Dr commented that they like for babies to be back to their birth weight within 2 weeks and Claire is up half a pound. We go back to the family Dr and to the Cardiologist in about 2 weeks for checkups.

My projects for the next couple of days are to call Early Intervention (EI) and see what we need to do to get her referred and to get an ad in the paper to find daycare for her. I had a couple of spots held in group day cares for her, but with the AVSD, I'm just not comfortable with her around all those germs. And since I go back to work in 4-6 weeks I need to get something figured out.

Saturday, January 23, 2010

Surgery went well

Claire's surgery went very well yesterday. We were able to see her about an hour and a half after the surgery started, so the wait wasn't too long. I was sad to see her on the ventilator and laying so still, but I guess this is a good warm up for her OHS in a few months.

She was taken off the vent around 10 am today, so just under 24 hours, which was what the Drs told us to expect. We tried to give her a bottle at her 1 pm feeding but she was still too tired to nipple, so the nurse inserted a NG tube and fed her that way. We'll try another bottle at her 5 pm care. Hopefully she'll be more awake for that one.

If everything goes well, we should be out of the hospital in a couple of days. All Claire needs to do is eat and pass her car seat test and we'll (finally) be on our way home!

Thursday, January 21, 2010

Surgery tomorrow

Claire is going to have surgery tomorrow to close her PDA. They gave her ibuprofen over the last three days to try and close it, but it didn't work. The PDA got a little smaller, but since we live so far away from this hospital the Drs felt more comfortable closing it before we go home.

I'm feeling very calm about the surgery. This seems so minor compared to what we have coming up with the AVSD that I'm just not worried at all. I'm confident that closing the PDA will help her heart function better and that it will give her every opportunity to grow and thrive before the OHS. She is in His hands and I know that is the perfect place for her to be!

Tuesday, January 19, 2010

Feeling much better

Claire Audrey arrived by C-Section at 10:24 am on Weds Jan 13. She weighed 5 lbs 4 oz and was 17 3/4 inches long. She was about 3 weeks early and is still in the NICU. She is doing very, very well. She is currently in an ioslette as she has jaundice. In addition to the heart defect that we knew about, there is a second condition that the Drs are watching. There is a vessel in the heart that usually closes within a couple of days of birth. Claire's PDA is still open, so they started her on meds last night to hopefully close this without surgery. They will do another echo on her heart on Friday and hopefully the meds will have worked their magic. If not, there is a possibility that she may have to have surgery to close this.

As you know, there was a suspicion before birth that Claire might have Down syndrome. This was confirmed by a genetic screening. What this extra chromosome means to us is that there is more of her to love! She is already an absolute joy and we can't wait to get her home.

One of the common themes in the book Gifts was about how scared and nervous parents were about thier babies having Down syndrome, but that once the baby arrived they realized their fears were much worse than the reality. I felt exactly this way, and now I can happily say that I am one of those parents who isn't worried at all anymore. My daughter is beautiful and perfect in every way!

Monday, January 11, 2010


The closer we get to Pip's arrival (only 2-3 weeks away), the more scared I get. I've been doing lots of reading on Ds boards and blogs and while most of the time this makes me feel so much better, every once in a while I'll read something that will totally freak me out. Last night there wasn't anything specific that I read, but I still had a bit of a melt down. Maybe I just needed to cry.

I'm scared that

-our baby will have Down syndrome
-that I won't be able to handle it
-that I won't love him/her
-that a special needs child will wreck my marriage
-s/he won't fit in
-s/he won't make it through the heart surgery

I had an even bigger list of things that scared me as I was trying to fall asleep last night, but these are the ones that have stuck with me to this morning. This list isn't the most flattering, but it is honest. I know that a lot of these fears will disappear when Pip arrives, but in the meantime they can be overwhelming.

My crying fit and Darren's support last night did me a world of good and I'm feeling much calmer and more optimistic this morning. This verse from Isaiah has been my constant companion for the last few days and hopefully will bring me even more peace in the days to come.

Isaiah 41:10

Fear thou not; for I am with thee: be not dismayed; for I am thy God: I will strengthen thee; yea, I will help thee; yea, I will uphold thee with the right hand of my righteousness.