On Monday, August 26th we met with Piper's neurosurgeon for another MRI. After reviewing the results, her neurosurgeon recommended Piper get a shunt placed in her head.
When we were considering wether or not to do fetal surgery, we were told that most children with Spina bifida need shunts to control hydrocephalus. This is common with the spinal fluid leaking during development. We were also told that there was a very small chance that with the surgery she might not need a shunt.
However, only a few days after our surgery we saw her ventricles in her brain begin to enlarge. We were hoping they would stabilize.
Piper began to have weekly head ultrasounds as soon as she was born. As her head continued to grow, her ventricles remained the same; enlarged but stable. She had her first MRI three weeks after coming home from the NICU. Her neurosurgeon was pleased and said we would just monitor her head growth.
The problem with being Piper's mother is that I see her everyday. I guess that's actually a good thing but that also means it is hard to notice the subtle differences that are happening. Like how her head has been growing larger and larger.
She has always struggled to hold her head up on her own. Tummy time is crucial around here because she is fighting a losing battle. Her neck muscles can't keep up with her head growth. There are days when I see her struggle to lift her head, but she can clear her face while on her tummy. But then it seems like the next day she can't even lift her chin off her chest.
At her Spinal Defect Clinic on August 6th, the nurse measured her head. It was off the charts, literally. She wasn't even in a percentile for head size. The nurse measured her had again. Then she measured mine . . . then Casey's. She was asked if Piper was having a hard time tracking items with her eyes. We confirmed that she was. We then scheduled a follow up appointment with her neurosurgeon.
A trip to her optomologist (this girl has more doctors than I have had in my entire life) confirmed that she was delayed in her tracking. Although he did not see any a pressure on her optic nerve, she was definitely delayed, even for her adjusted age.
Piper's physical therapist commented that her head was looking bigger between our appointments which are only two weeks apart. So it wasn't really a surprise when the neurosurgeon told us it wasn't a matter of "if" she'll need a shunt, but a matter of when.
To be quite honest, I can't help but feel disappointed. While I know that a shunt is not the end of the world for us, I feel that Piper has already been through so much. When she was in the NICU, I remember telling her, "You won't remember this, I promise." It was rough to see her in a mask, hooked up to machines, feeding tube down her nose, and IVs in her arms. And that was when she didn't do anything but sleep. Now I think about my happy, smiling baby having to go through surgery again, and it breaks my heart. I'm sure there will be more crying from me than there will from Piper. And even though I'm sure she won't remember this either, I hope I will get through it.
We head down to Denver on Wednesday for lab work and to meet with the nurse practitioner. We will stay in Denver and her surgery is scheduled for Thursday, Sept. 5 at 11 am. If all goes well (and please pray that is does) we will be discharged Friday.
And once again I will tell Piper that she is tough as nails. Because she has to be. We both do.
No comments:
Post a Comment