We received a call from the neurosurgeon this morning informing us that Melody's soft spot was bulging, so they will most likely need to put a shunt in tomorrow. The were completing a head ultrasound as we arrived at the hospital this afternoon, and we got the initial report from the resident physician right before we left. The hydrocephaly (fluid in the brain) is increasing, so a shunt is now necessary. We have been told the surgery will be done at either 7:30 or 9:30 am. We will try to be there to see her before surgery and talk with the neurosurgeon and be there after she is out of surgery.
Shunts are necessary in 80% of spina bifida children. However, I had really hoped we'd beat those odds. Today was an emotional day for me as I realized Melody would need to undergo yet another surgery, her homecoming will be delayed a few days, and we'll be dealing with a shunt and the fear of shunt failure for the rest of her life. I had tried not to get my hopes up, but I guess I did.
I believe this is the life of a parent with a special needs child. One moment you are positive and filled with hope, and the next you are discouraged as you deal with realities you really wish weren't there, but are powerless to change.
This afternoon we got to hold Melody for a long time and feed her. I also changed her diaper for the first time. She only had one or two "things" attached to her body today, so it was fun to hold her without all the wires, etc. Several of those will be re-attached to her body tonight in preparation for surgery, but we enjoyed it while we could. She is a very contented baby most of the time, but if she is hungry, she is sure to let the whole world know. Once fed, she looks around, or falls back to sleep. She loves her big green pacifier, too. We hope the contented personality will continue once we get her home.
What a beauty she is Sara! Prayers for all of you as you take in yet one more day as parents to this wonderful little girl that you now can hold and cuddle. Prayers for strength for you and safety/healing for Melody.
ReplyDeleteLove, Cindi A.
I wish for you (and for her) that she didn't need to have a shunt placement but I will tell you that it is easier to have one placed now while she is itty bitty than later when you are all home and settled and having to come back to the hospital. I will also tell you that the first year with a child with the shunt is the most difficult. You are constantly wondering if your child is in shunt failure. However, once you are past that first year, you go on with life as you have with all of your other children. Most of the time you actually forget that the shunt is even there. We are three years, nine months out and Emmy has not had any shunt issues. You are right in the fact that life with a child with special needs is a bit of a roller coaster ride. It sure does help you to appreciate the "top of the hills" when you reach them though. Praying for a smooth, successful shunt placement for your Melody tomorrow.
ReplyDeleteI came across your blog today while researching treatments for hip dysplasia, as my little girl has been in the Pavlik harness about 2 1/2 weeks and I'm wondering if there is a better alternative. Anyway, my daughter also has Myelomeningocele. She is 5 months old. So much of what you've written is exactly what we've experienced. we got our hopes up, despite trying not to, that our daughter would beat the odds. regarding shunting, catheterizing, etc. Our daughter fills us with so much joy, she's an absolute delight, but some days it all just hits you and you feel so sad knowing all the struggles your child will face. It's so hard.
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