Like sands through the hourglass, so are the days of our lives. No surgery tomorrow. We coordinated childcare through the weekend, birthday celebrations for Kate, and church responsibilities for Matt but at the appointment with the surgeon this afternoon we were told that Maggie's doing too well for surgery. Her fontanelle seems even softer than they did a few days ago and her head circumference has actually shrunk by a miniscule amount. It's a good thing and somewhat miraculous, but it's tough to feel pulled in so many directions. Chances are she'll still need the surgery (in fact the neurosurgeon has scheduled a slot for us in the operating room for the next multiple Tuesdays just in case) but until she gets worse the docs don't feel good about doing something so permanent and drastic unless we know for sure that it's necessary. It's the right call, but Maggie seems so discontent to us. She's always been loud (rooting, grunting, pushing, snorting) but now she's spitting up a lot more and seems to cry more than usual. We'll keep plugging along, and maybe this improvement will continue. Whatever does happen though, it's going to be fine. We'll just take it as it comes--at least now the kids won't miss their dental cleaning appointments tomorrow (which we had forgotten about). We also won't have to clean the house tonight and can put that off til another day as well. Hooray for procrastination!
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
Davy is so cute! I love how excited he looks,. You guys are awesome. Do you think you can send some of your faith to the gale's home.:)
ReplyDeleteMillie,
ReplyDeleteI am amazed by your faith and perspective, as always. I am so sorry for this setback... It'll all work out, right?! God is so aware of your little family.
Love you!
SB issues so unpredictable, but nothing we do for our SB kids is a waste of time...even when they send us home. SIGH. We caution on the safe side and can rest easier knowing we've done our part. You are amazing Millie. I hope you can get some down time this Labor Day weekend and enjoy being home. :-)
ReplyDeleteKatrina
Fellow mom w/ a SB child
I continue to be impressed and amazed at the faith the Killpack family has. I am so sorry for the setback. I hope that Maggie will continue to improve and that things will follow the correct course for her.
ReplyDeleteYour strength inspires me!!! I think about you often throughout my day and it gives me strength and hope!!! Please keep blogging ALL of it the good, the bad, and the ugly. You are such a rock and I inspire to reach have your faith!
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