It started a few days after Christmas when I took Harper to the Peds for her two month check up. There they did the usual measurements and checks. When the doctor got into the room he asked, do you have any questions or concerns? I said well actually I think her head is getting kinda big. He agreed and looked at her measurement. It was off of the ricterscale as far as what it should be at her age. He then looked at what it had been only two weeks before. It had made a significant jump. So he said that he would put a call into his neurologist friend at MUSC to see what he said. Two hours later he called me at home to say that he wanted Harper at MUSC the next morning for a MRI scan. Since she is such a young baby, they had to put her asleep to do the scan. That in itself was a scary experience. My doctor had said that they would probably keep us overnight just to monitor her from being under anesthesia. But when she woke up in radiology they said she was fine to go home and that our doctor would call us in a few days after they read the scan.
We get back home, pick up our son from my sister-in-laws, get settled back at home, and then the phone rings. At 10:00 pm. Our worst fears.. It is a doctor from MUSC who looked at her scans and all they would tell us was that they found something on her brain that needed to be taken care of right away. They were sending an ambulance to pick us up and bring us back to the hospital. Needless to say, I lost it. What was wrong with my daughter? Was she going to be ok?
When we get to the hospital they bring us up into the children's ward and a million doctors come in to talk to us. Harper has a congenital nervous system disease called Hydrocephalus that was caused by aqueductal stenosis. This means that the fourth ventricle in her brain is too small for the cerebrospinal fluid (CSF) to get through. So she has fluid on her brain that was causing swelling because it has no where else to go. Hydrocephalus poses risks to both cognitive and physical development. However, many children diagnosed with the disorder benefit from rehabilitation therapies and educational interventions and go on to lead normal lives with few limitations. So we were told that she would have to have surgery the next morning to implant a VP Shunt into her brain. This along with a catheter that runs from the valve to the stomach would remove the fluid to another place in her body where it would be absorbed. This is something that she will have for the rest of her life.
Harper after surgery in the hospital.
She will have more surgeries in the future to fix the shunt when it fails. We were in the hospital for almost a week before we were sent home.
Now we are home and recovering. We are constantly going to back and forth to MUSC for check ups and shunt adjustments every few weeks. She has some of the best neurosurgeons and neurologists in the nation and we feel so blessed that it was caught early. Hopefully early enough that her development will not have a lot of delays or problems. Regardless, we are going to love her and put her in God's hands. He has done amazing things so far. The doctors say that she is doing remarkably well.
So Thank you MUSC.
We have also been very blessed by the outpouring of love from our families, friends, and community. They have gone above and beyond in our time of need and we can't express how grateful we are!!
This fight is far from over, but we know that with God's love and guidance we will get through it.
My husband and I are now a part of the hydrocephalus awareness association and are looking into making a WALK in Myrtle Beach in the next few years.
6 days after we came home from the hospital, my Grandaddy passed away. He had suffered with cancer for almost a full year.
He was an amazing country singer who gave me my passion for music.
Even in the short amount of time that he got to be a great-grandaddy, he was an awesome one who was full of love.
I am so happy to have had so many amazing memories with him and stories to tell my kids when they get older.
So even though God took my grandaddy to heaven to be with him, he kept my precious girl down here with me and for that I am grateful.
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