September 10, 2009

Sagittal Craniosynostosis-Uapdate on Alayna

I didn't get much sleep Tuesday night. I woke up about every hour wondering what time it was and if it was time to get ready to go. Then, little Alayna, while she was rolling around in the bed between Luke and myself, found my hair and decided that from about 3am till 5am she was going to make her goal in life to play with it.

Our check in time was 6:45am. Alayna hadn't eaten anything since 4:30am but she was being so good, especially for being such a tired, hungry little thing. She was playing and talking, then got tired and a little grouchy but she was still snugly.

She looked so cute in those funny little hospital pajamas with socks that wouldn't stay on her feet. I was doing okay... until I had to hand her over to the anesthesiologist. That was SO hard, so very hard.

We checked into the waiting room about 8:45am.

At 10:30am we got our first update. It had taken a while to get all the I.V.'s and the breathing tube that when in through her nose all put in. She had two IVs, one in her hand, and one in her foot. And a central line that went into her jugular in her neck, So at 10:30am they were just making the first incision.

At Noon we got a call from the Neuro surgeon. Everything was going fine. He had finished his part of removing the plates from her head without a problem. I asked him later if her head was fused clear from front to back. He said it was. One solid bone. I then asked him how early the bones can fuse. He said that he has seen them fused together in the womb in an ultrasound. Crazy.

Anyway, at 2:30pm, Dr. Saddiqi came out and found us. Everything had gone just fine. Nothing out of the ordinary. She did have to have a blood transfusion but she neither did she loose an extreme amount either.
At 3:30pm we finally got to see her.


She looked so sad. So swollen. She was pretty doped up on morphine. She was getting some about every hour there at the beginning.

When she did wake up enough to peek out of her swollen little eyelids it was usually because her breathing tube was clogged or because she was in so much pain.

I have never experienced ANYTHING as heartbreaking as watching her try to cough or cry without the slightest little sound coming out because of the tube down her throat. I think the tube really scared her. Made me cry every time.

They usually try to take the tube out right after surgery but because she still had remnants of a cold leftover she had some buildup and since her throat was swollen they were worried about her being able to breath on her own so they decided they would leave the tube in overnight.

We stayed with her the next several hours in the PICU. Thankfully they weren't too terribly busy and we were able to get a "sleep room". A room with a bed just off of the parents waiting room were we spent the night.

I was so tired the nurses told us to get some sleep since she would be on morphine and will sleep most of the time. They said she would be more awake the next day so we would want to be there for her then.

Finally at 10:30pm we crashed. But I kept having weird dreams so at 4:30 this morning, I woke up and decided to go check on her.

13 super cool people speak:

Heidi said...

I'm so glad things went well in the surgery. But I do believe the recovery is the hardest part. Keep it up--you're doing great!

You know, the way her mouth is in the pictures, she looks like some of the pictures of the boys when they sleep.

Emily C said...

*hugs* We're praying for Alayna and for your family.

Lili said...

Thank you so much for the update, I've been thinking/praying for you and am so glad to hear that the surgery went well. I'm so proud of you all. Now I'll pray for Alayna's comfort and a speedy recovery!

Mr. Farmer's Wife said...

I found your blog the day before the surgery when I googled "BYU bookbinder." We prayed for you and your baby throughout the day here in Texas, beginning with our drive to early morning seminary. May your family have Peace.

Brittney said...

Good luck with dealing with recovery. I can't imagine how hard it's going to be to watch her in pain and confused about what's going on.

Chris and Kimber said...

I am glad to hear that the surgery went well. Hopefully everything continues to work out. We'll keep you guys in our prayers.

Garvin Smith said...

I'm thankful we live at a time when we have modern medicine available to us! Think what it would be like without it!

Tabitha said...

What an amazingly strong mother you are! I can only imagine how heartbreaking it is to see your child suffer and know that it has to happen so she can get better. I'm glad that you both have done so well this week and that she is slowly but surely getting better.

Anonymous said...

our lottle boy who is 7mths just had the same type of surgery and he is well on the mend. as a parent it was hell and something we would never want to ever go through again,i wish ur little one speedy recovery jane

Serene is my name, not my life! said...

Thanks Jane. Good luck to you too. Its amazing how they can recover so quickly from such a big surgery!

Meg said...

We are less than a month away from taking our baby girl in to get this same surgery. Thank you for sharing your story. I know it will help having read about it from a mom's perspective before having to live through it.

Serene is my name, not my life! said...

Good luck Meg! I know how scary it feels, so hang tight! Everything will be fine! Don't hesitate to ask questions about anything!!!

Julise said...

Thank you, for this blog. My little girl's surgery is in six weeks. I didn't even know that a baby could be born with a fused skull. Right now I am scared of the unknown so thank you again for telling your experience.

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