Spina Bifida Links

Utah has a great support group for spina bifida families. The first activity we went to was when I was pregnant with Davey. I wanted to see how kids with spina bifida look and acted. The families there were so kind as they shared their support and experience with us. It's always nice to visit with other moms who "get it".
http://utahspinabifida.org/

I had fetal surgery on Maggie's back when she was 25 weeks in utero. Children's Memorial Hermann Hospital in Houston performed the surgery. We were so blessed by this wonderful team. They will forever be our miracle workers. This link has a video detailing spina bifida and the fetal surgery. It was a great resource for us as we tried to decide whether or not to do the surgery...not an easy choice.
http://childrens.memorialhermann.org/texas-fetal-center/spina-bifida-myelomeningocele/

Facebook has a few groups for moms who have had the fetal surgery. For women who choose the fetal surgery, it can often be a lonely road. These groups connect you to other families who have been there, done that.
https://www.facebook.com/groups/SpinaBifidaFetalSurgery/
https://www.facebook.com/groups/119828200230/

Kids on the Move is fantastic! Davey started receiving services when he was just two weeks old. Now Maggie does too. These therapists and workers become an integral part of our kids reaching their potential.
http://www.kotm.org/

Shunt Happens

On Thursday night, I couldn't get rid of a nagging concern. Maggie's eyes were sunsetting. This is where the eyes turn downward with the white showing above. It wasn't constant, and she wasn't showing the typical signs associated with brain swelling. But the Spirit just kept working at me, and I decided to call the neurosurgeon at Primary Childrens. He wasn't too concerned and told me to come on Friday for spina bifida clinic. Once there, the doctor thought it was nothing because Maggie's fontanelle (soft spot) was still soft and of course Maggie wasn't sunsetting for him. But I didn't want to go to Houston next week until I knew for sure she was okay. So he ordered a head ultrasound. Sure enough, the ultrasound showed significant swelling in the ventricles of her brain. A shunt is needed. Poor Maggie. I hate to see her go through another surgery. When I'm at the docs office and get bad news, I try to act brave and wait until the car r

Curve Ball

Maggie is out of surgery. Things did not go as planned. As the doctor put it, "she threw us for several curve balls." We could not do the ETV. Once in her brain, he discovered that it would be too risky to proceed because of her anatomy. From what we remember, her pituitary was too close to an artery. As they were pulling out, a blood vessel burst. They had to get that bleeding under control before sewing up that side of her head and cutting open the opposite side for a shunt. That's when the neurosurgeon called us to tell us the disappointing news that the ETV wouldn't work. He said he'd come back to visit us in 45 minutes once the shunt was placed. We always knew this was a possibility, but were told her anatomy was "perfect" for the ETV. Guess you can't judge a book by its cover, even with an MRI. Shunt surgeries are common, and it is rare to have serious complications. But two agonizing hours later, we were told what happened. Duri

She's Here!

The c-section went beautifully, Maggie was delivered at 10:17. She's 6 lbs 13 oz and has a smattering of Davey's hair, my chin, Millie's voice, Kate's ears, and Josie's temperament. Her lungs seem pretty immature so she's in the Newborn ICU for now. Millie is back in her pre-op room and has not yet been able to really see Maggie. Immediately after delivering her the doctors whisked Maggie into the NICU in the adjoining room. I've been able to see her in there and have shown Millie the pictures. The lesion on her back looks good--it looks like a patch of skin covering what used to be the hole that was there. Her feet don't have any noticeable clubbing and she definitely has more sensation there than Davey did. We are so grateful that she is here. Posted with Blogsy

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