Tuesday April 1, 2008
Our trip to Ann Arbor today was our shortest one we've ever made. It was only one appointment and that was with Cayman's Neurosurgeon (the doctor that did her shunt surgery to drain the fluid off her brain). I'm glad it was "short" because there is a lot to figure out in taking Cayman's care on-the-go. Her feeding time was in the middle of the 2 hour trip to Ann Arbor. So I took my breast pump, pumped in the van, then tried to bottle feed her as much as she would take which is difficult since she's so smooshed in her car seat, and then take out her feeding pump, get that all set up, feed the rest of her food through that, and then when she's all done figure out how to wash the feed tubing and my breast phalanges. And then on the way back home I did this whole process all over again. Mike and I were impressed that we were only 5 minutes late to her appointment. Not bad for first time parents getting themselves around and the baby!!
Dr. Maher (the Neurosurgeon) is a bit concerned about the rate the fluid is draining from Cayman's head. It's draining very quickly. 
Her head has drastically sunk. It seriously looks like her head is collasping on top, mostly in the front, which is exactly what the doctor doesn't want to see. It's making her skull bones overlap each other and is stretching her skin thin over the high ridges of the overlaps and over her shunt. Dr. Maher's concern is if the fluid keeps going down this quickly her skin could tear over the area her shunt is located. He is also concerned about her skull bones overlapping each other. Cayman's skull bones are larger than an average baby's because her head was so large. It will take awhile for the growth of her head to grow big enough to push the skull bones back out so they aren't overlapping, and it's possible the bones will fuse together overlapped before her head has a chance to expand. The biggest problem with all this is Cayman's shunt valve has already been set to drain the fluid at the lowest rate. So Dr. Maher wants to see us next week, and until then whenever Cayman's laying down or when we're holding her, her head needs to be lower than the rest of her body. Not so she's standing on her head, but a slight incline....or decline I guess it would be. Hopefully this will slow down the fluid drainage. Dr. Maher is staying optismistic that this is something that will work itself out. If not it means one of two surgeries to fix this situation: 1) to put in another shunt that will regulate the shunt she has now or 2) take her shunt out, let the fluid build back up, then go back in and place the shunt again. Neither one of these is a "pretty" picture for Cayman. So please pray hard for her. I'm so afraid she'll be back in the hospital soon. And I'm afraid that another surgery so soon will mess up her progess she's made with bottle feeding. It's still weak, but each day there is a little bit more improvement. In fact, today she's taken two full feedings from the bottle!!
Her head has drastically sunk. It seriously looks like her head is collasping on top, mostly in the front, which is exactly what the doctor doesn't want to see. It's making her skull bones overlap each other and is stretching her skin thin over the high ridges of the overlaps and over her shunt. Dr. Maher's concern is if the fluid keeps going down this quickly her skin could tear over the area her shunt is located. He is also concerned about her skull bones overlapping each other. Cayman's skull bones are larger than an average baby's because her head was so large. It will take awhile for the growth of her head to grow big enough to push the skull bones back out so they aren't overlapping, and it's possible the bones will fuse together overlapped before her head has a chance to expand. The biggest problem with all this is Cayman's shunt valve has already been set to drain the fluid at the lowest rate. So Dr. Maher wants to see us next week, and until then whenever Cayman's laying down or when we're holding her, her head needs to be lower than the rest of her body. Not so she's standing on her head, but a slight incline....or decline I guess it would be. Hopefully this will slow down the fluid drainage. Dr. Maher is staying optismistic that this is something that will work itself out. If not it means one of two surgeries to fix this situation: 1) to put in another shunt that will regulate the shunt she has now or 2) take her shunt out, let the fluid build back up, then go back in and place the shunt again. Neither one of these is a "pretty" picture for Cayman. So please pray hard for her. I'm so afraid she'll be back in the hospital soon. And I'm afraid that another surgery so soon will mess up her progess she's made with bottle feeding. It's still weak, but each day there is a little bit more improvement. In fact, today she's taken two full feedings from the bottle!! She sees the Pediatrician on Thursday. Cayman's skin is starting to have a yellow appearance to it, as well as the whites of her eyes, which can be signs of jaundice. So we'll talk to the doctor on Thursday about this.
3 Showin' Comment Love:
Kristin- She is such a beautiful little girl. I smile every time I see that sweet face.
I hope they can figure out a solution to the shunt problem. It sounds very complicated.
I will keep her in my prayers.
I'm praying that the fluid drainage slows and about the situation with the bone structure in her head. As a mommy, it must be so hard not to worry! Cayman has proven so many times already, in only a few weeks, what a fighter she is. I know God has great plans for her (Jer. 29:11)...beyond what anyone can even see right now. :) Thanks for the updates and hugs to you all! She's SUCH a pretty baby girl...your pictures just make me smile.
Doesn't she look like she is dreaming? She's probably dreaming about her two grandmas playing with her :o) Hugs and kisses and prayers to you our precious little angel!
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