Wednesday, August 5, 2009

Superbabies

We've had Damon and Audrey with us for almost a week now. Can't believe they're about to leave already! (Tomorrow.) Many thanks to Shelly's mom and sister Becky for driving them out to us and helping us so much with them all week. It's been fantastic having them here. Taking care of them in our current living situation is a lot of work (especially getting Audrey to nap or sleep at night, since we all share one room), but they are SO much fun. We had a little party to belatedly celebrate Damon's birthday. He loves the playground in Golden Gate Park. It has this big concrete slide and a bunch of cardboard pieces that kids can sit on to ride down, and Damon loves it. He's been a joy to have around, and had a few funny lines, such as, "Audrey's scared of tacos" (not really, he just didn't want to eat them) and "I made a pee!" (which, happily, was the letter and not an accident). Audrey absolutely loves this Dora video grandma got for her, with an episode with "superbabies" that she always wants to see. It is hilarious hearing her repeatedly ask for "supobaby!" It's our line of the week. She says "iss a dinosowa!," can count to eleven, can sing about thirty or forty songs and does a million other funny things.

Monday we had another day of appointments, and Kaitlyn and Shelly are still both doing very well. There are still no contractions and the cervix looks long and thin (i.e. not close to labor), so hopefully that will continue. Kaitlyn is still very active; they do this test where they watch her movements on the ultrasound monitor to see if she does everything she's supposed to for her age, and they were able to check off all 8 of 8 within two minutes. Her legs are still kicking well, which we're always thrilled to see.

The one thing that makes us only slightly concerned is a very slight trend of building up of cerebrospinal fluid (CSF) in the brain. The ventricles, which are basically sacs that hold fluid to cushion the brain, should normally measure up to 10 mm in width. Kaitlyn's ventricles measured 6 and 7 in the days just prior to the surgery; last week they were 9 mm, and this week they are 10 mm. So she's still within the normal range; it's not really scary until it gets up to 16, 18, etc. And there is the obvious issue of measuring error; millimeters are pretty small, and each ultrasound tech might get a slightly different result. So we'll see over the next few weeks if this trend continues. We kind of expected this, though. Before the surgery the CSF was leaking out of the lesion in her back, and now that escape route is closed. The rationale behind the surgery, as Dr. Gupta (Kaitlyn's neurosurgeon) explained, is that our brains are normally able to reabsorb all of the CSF they produce. A baby with spina bifida, because the CSF leaks out of the open spinal column lesion in her back, doesn't develop the normal systems for reabsorbing the CSF. They don't yet understand how those systems really work or at what gestational age they ordinarily develop. But the hope is that by doing this surgery, the brain will have a few extra months during which it will hopefully have time to develop those systems. So it stands to reason that there should be some buildup of CSF after the lesion is closed; we just hope that her brain learns how to reabsorb it in time.

Shelly, by the way, is doing fantastic. She still gets tired quickly and there are times when she feels nauseous or in some pain, but every day does seem to be better. We've been getting out pretty much every day since the kids got here -- the park, out to restaurants nearby, church on Sunday (we went to all three hours), a few drives around town, to the mall, to Fisherman's Wharf, the beach, and today hopefully the museum or the zoo -- and we just push her in the wheelchair, and she feels fine. It's been a great week with the kids.

15 comments:

  1. aww, I bet it's been so awesome to have your kids with you =) I'm glad that things are still looking up and I'm praying that the CSF goes down soon. Love you guys!!

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  2. It must be such a special family time. I'm so glad that you've had this time together and you've been able to do fun things. You probably feel closer as a family and couple. Enjoy your last day of the visit together!

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  3. What a treat to have those little ones with you! Sorry we are stealing them away for a time! We promise to return them soon. Enjoy your last day! We love you and pray always for Shelly and Kaitlyn's good health and recovery.

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  4. I'm so glad to hear how you guys are doing! I'm glad that Shelly and Kaitlyn are doing so well, and that you guys are getting to see some of the fun stuff in SF.

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  5. Happy to hear things are going well. And happy you got to see your kids!
    Take care

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  6. Thank you so much for the update. Please give Shelley all my love. We are still praying for you all. The kids are lucky to have my sister for their grandma. She is the most loving person I know and your little ones will be loved and cared for to "infinity and beyond", to quote a cute little blonde hair boy I know.
    Love to you all... Aunt JoAnn

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  7. So good to hear so much good news with you all. I am so happy that you got to have your kiddos come for a visit. I am sure that was the best kind of healing you could have. You are amazing people and inspire me. I'll keep praying for you. Thanks for the update!

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  8. I think the title of this post should be SuperBURRS! Your whole family is wonderful and I'm so glad that you got some time together this week. It was great to see you last Friday and Shelly, you really do look fabulous. We're thrilled to hear the latest report that things are going well. Stay in there, Kaitlyn!

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  9. It sounds like you have had a fantastic week! I am so glad to hear how well things are going. Thank you for posting the updates!

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  10. Ah, I love you guys. Obviously nothing can keep you down for long. I'm glad you had a week of family togetherness. And thanks for sharing it w/ us.

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  11. How nice to have a break and be together as a family! Thanks for the update, it is good to hear progress. Did you know that Liz and Jared Stanley are living in SF??

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  12. I think of you everyday and I am praying for you to have the strength and peace to endure these next few months. You continue to be on the minds of our ward family. We are praying and fasting for you.

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  13. I'm so glad to hear all the great news! I'm glad that the kids were able to stay with you. Way to go! I think of you often.

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  14. So happy that you got to see your children! Keepin' you in our prayers!

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