Dad’s note: In honor of J.P.’s 12th birthday, I’m writing “The J.P. Story,” which looks back at our journey through birth and now approaching teen-hood. I hope you enjoy. The fifth chapter looks at J.P.’s first trip to the operating room. To start at the beginning of the story, click here.
The amount of blood work needed from J.P. increased with his diagnosis of diabetes insipidus, and Paige and I were just trying to learn how to feed him.
The lactation folks were assisting Paige with trying to get J.P. to latch on to her for his nutrition, and I was working on trying to get him to take a bottle. We learned neither way was going to be easy.
Our family and friends continued to visit us in the hospital, and the fact so many people were behind us through J.P.’s birth really helped to keep our spirits up as we dealt with the new diagnosis and feeding issues.
What we weren’t expecting was what we learned next: There was a problem inside J.P.’s head that had to be dealt with quickly.
Because of his brain malformation, the cerebrospinal fluid that travels through the brain and spine through a canal system wasn’t moving properly inside J.P.
Again, because of his diagnosis of holoprosencephaly — the fact that the brain didn’t form and divide properly in the womb — meant J.P. didn’t have that canal system most of us have, and the fluid was building up in his head.
The diagnosis given to people with this condition is hydrocephalus.
While the diabetes insipidus diagnosis was a relatively easy one to deal with, because we could just give him a pill and make things better, the new diagnosis would require brain surgery quickly.
It was a surprising and stunning moment that sent us back to our knees in prayer. I was worried about sending a newborn to brain surgery and knew nothing about the disease.
It was time to activate the J.P. Hotline again and seek prayer from our wonderful group of friends and family.
I think the hardest part for me was that I felt like I led all of these people down a path with us through the pregnancy and birth, sharing such a joyous moment with them and now had to admit that the miracle we had all been celebrating came with a catch.
Our neonatologist, Dr. Winslade Bowen, filled us in on what hydrocephalus was, and we looked at images inside J.P.’s brain. He showed us how the fluid was building up and said he was seeking a pediatric neurosurgeon to get things taken care of as soon as possible.
Bowen was able to get in touch with Dr. Jogi Pattisapu, a pediatric neurosurgeon in Orlando who is world-renowned and a leader in research into hydrocephalus.
I knew God was involved and watching over us because Pattisapu was available on Labor Day to do the surgery. He amazed me with his interest in our case, as well as his knowledge and compassion, which isn’t big among surgeons.
Bowen and Pattisapu really put our minds at ease despite the description of drilling into my newborn boy’s skull and implanting a shunt to drain cerebrospinal fluid to his abdominal cavity so it can be dispersed through his body.
To this day, things still seem to be a blur between meeting Pattisapu and the day of surgery.
I learned a lot about things I never wanted to have to do again but figured I probably would as the parent of a child with special needs.
There was the moment when we had to go to pre-op holding and get asked a million questions about our 3-day-old baby. I felt like I still barely knew him.
There was the moment when we had to say goodbye to J.P. and watch him be wheeled back to surgery. It’s heartbreaking.
But my favorite — yes, I’m being sarcastic — is the surgical waiting room. I believe it’s the closest thing on Earth to hell as you wait for who knows how long for word on your loved one and feel totally powerless to do anything but read old magazines that you can’t begin to concentrate on or even understand.
I think we were pretty lucky that J.P.’s surgery moved quickly and was without complications. Pattisapu immediately came and gave Paige and I hugs and told us our baby was a trooper.
We had made it over another hurdle and were on the road to recovery. Unfortunately, the fact J.P. did require surgery meant a move to the neonatal intensive care unit we had hoped to avoid, and we wouldn’t be discharged anytime soon.
Continue to Chapter 6: Bottle battle
The latest news on WordPress.com and the WordPress community.
Surgical waiting room is the worst. Thanks for sharing your story 🙂