********************UPDATED********************
As promised, details of the surgery have finally come. The surgery went very well and as planned. I have posted a diagram (the one on the left) of the surgery and what the shunt looks like. Our Dr placed hers in the back of her head and the catheter goes into the left ventricle then drains into her peritoneum (the sac that is around all the belly organs). We saw her about 2 hours after the surgery. It was very sad, she was so pale and looked so helpless. For a while we couldn't touch her because the stimulation would cause her to become apnic. The apnea continued to be a problem all through the day and night and with feedings. The first 2 tries at feeding were pretty scary, blue is not a color I enjoy seeing on my daughters face. Alarms went off, Dr's and nurses came running in, they bagged her...very scary. I somehow left her for the night and came home to sleep. (not without help though...thank you pain pills)! When I went back the following morning she looked better and worse. Her color was better but her head was very deformed from the pressure being released. Her bones overlapped and the soft spot was very sunken in. I was told this was normal but for me it was not normal. I have however gotten slightly used to what she looks like. She was monitored all through the day and was finally released around 5pm. We have been doing very well since we have been home. The only differences from before is until she gets the stitches out of her head she can't lay on the incision or shunt. She can only lay on the sides of her head and has to be rotated or the bones in her head shift. She can't be held much because she has to stay as horizontal as possible so that the pressures start to normalize. We have to keep very clean as she is highly susceptable to infection for the first 3 weeks and up to 3 months after the surgery. I have a very brave and strong little girl. She is perfect and is doing so much better than anyone imagined. We are just taking it day by day for now!
13 comments:
I'll keep you all in my prayers.
Glad the surgery went well. I'll keep little Carly and the rest of your family in my prayers.
As if having a baby isn't hard enough...you and your family have this on top of it. I am glad she is doing so well. Kudos to you.
I'm always amazed at the world of medicine these days. Wow! That's a lot for such a little thing to go through. I'm glad she's doing so well with everything.
She is a very strong little girl! Babies are so much faster at healing than adults. It is proven I think. You are being so positive through all of this! I'm glad she is doing so well and is home now.
I know this is so hard and you're doing a great job! Never give up HOPE! I have been praying for you guys! Hang in there, you will get through this.
Amanda
Thanks for keeping us updated. I'm glad to hear the surgery went well.
I am so glad to hear that everything is going better now, I am glad that you are able to have her home even if you can't hold her very much. You're in our prayers.
Glad to hear the update and that she's home and the surgery went well--so will she have to have the shunt for a very long time? Is this something she will always have or once it's done it's job, will it be removed?
And I only saw one of my babies once with that blue coloring--and it only takes once to know how frightening it is! Benno turned blue suddenly a few hours after he was born when (we think) he gagged on some gunk in his throat.
Always thinking of you guys!!!
Carol, the shunt is permanant. Unless they come up with another way to drain the fluid she will have this for life.
I'm so glad the surgery went well. I've been thinking about you guys a lot. I know I've said this before but I really really really can't wait to get down there and be with all of you guys. Second week of June!
lacy!! You have been through a lot the last couple of months. I feel so close to you right now after reading your blog. I delivered Sienna via emergency c-section as well so I did not hold or see her for 1 day. I had a very hard time after she was born. I missed being pregnant so badly but partly because she was in the Nicu and came 6 weeks early. I know how you feel though. I still get that way and Sienna is 8 months now.
My prayers are with you and your family. Carly is so precious and I hope recovery goes smoothly for you and baby.
Hi I hope you don't mind me just dropping in like this but I just have to say thank you. Thank you for being sooo truthful. I am home now 4 days after my daughter had her shunt surgery. It is very scary being away from the medical staff. I am glad you mentioned the ventricals overlapping and the soft spot sinking in a little. I was just about to freak out. Our Children's Hospital let us go home 2 days after the surgery so none of this happened in the "comfort" of the hospital. So they said this is normal? Does it ever get normal really? And how is your baby? Is she hitting her milestones? How old was she when she was diagnosed and had surgery? Our daughter had emergency surgery not planned. She was diagnosed and 3 hours later I was handing her over to a surgeon I just met 2 seconds ago. it was very very scary. I hope you still blog and you get this message. If you do please email me pattersonacmmm@yahoo.com
I know that's kind of out there to post my email like that but I am in desperate need to find a mom going through what I'm going through.
Thanks again
Melissa
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