The J.P. Story: Salty problem

Day one

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 fourth chapter looks at J.P.’s first full day in the hospital and our introduction to his neonatologist. To start at the beginning of the story, click here.

Word continued to spread Saturday through our friends and family that J.P. had been born and was looking good.

The 8 pound 4 ounce bundle of joy made it through his first night in the newborn nursery with flying colors, and we met with his neonatologist, Dr. Winslade Bowen, on Saturday.

Bowen had heard about our plight and decision to put it in the Lord’s hands and was one of the first to call it a miracle. He prayed with us in our hospital room and provided an outline of his plan of care for J.P.

There would be blood work, CT scans and much more in our future to determine how best to care for J.P. and when we would be able to take him home.

Pastoral visit
Dr. Joel Hunter and Becky Hunter visit J.P. shortly after he was born.

Paige and I were still mesmerized by the whole night — and so were many of the others who had witnessed the event.

Dr. Joel Hunter, the senior pastor at Northland Church in Longwood, and his wife, Becky Hunter, came by to see J.P. I remember him telling us the nursing staff was getting antsy about the many visitors to our room, but he told them, “I’m their pastor,” and made it through.

The Hunters prayed with us for J.P.’s continued good health and thanked God for what he had done.

J.P. also got his official hospital baby photo taken with the one outfit we had brought with us to the hospital just in case. It’s a photo we’ll always treasure.

First photo
J.P.’s photo taken the day after he was born at Florida Hospital-Orlando.

There was a rundown of things our nurse began going over with us so we would know how to feed J.P. Paige worked on breastfeeding, and we were introduced to the breast pump, so I would be able to learn to feed him, too.

I was amazed when the lesson came on how to give J.P. a bath without soaking everything in our hospital room.

There was also a whole change in my mindset about this time. A wall I had built up around myself simply came tumbling down when I looked at him and saw he was alive — laughing and smiling like all of the other babies in the nursery. I was his father, and he was my son. It would never change, and I loved him with all my heart.

Test results also began coming back on J.P.’s blood work that raised our first red flag. He was not maintaining his sodium level adequately, and Bowen said something would have to be done. We first began adding additional water to his diet, but even that didn’t work.

Bowen diagnosed J.P. with diabetes insipidus. an uncommon disorder in which the body simply releases too much of its free water in urine. Many typical people who have it say they’re always thirsty.

J.P. with dad
J.P. sits with me in our hospital room shortly after birth.

Where common diabetes involves the body’s sugar level, diabetes insipidus involves the salt level. The level of sodium in the blood should be between 135 and 145, but J.P.’s level was higher than that.

Bowen told us the hormone that controls the amount of free water in the body is called vasopressin. It’s released in the brain, so considering J.P.’s holoprosencephaly diagnosis, it wasn’t surprising that he didn’t have the capability to adequately control it.

Luckily, there is a drug called desmopressin, or DDAVP, that is a synthetic replacement for vasopressin. He ordered the drug for J.P., and we were told that they would continue to monitor him while he was hospitalized.

Learning that J.P. would likely need to be given DDAVP for possibly his whole life was troubling, but considering how far we had come, I don’t remember being that worried about it.

However, there was a much bigger problem looming inside his head that would soon send us back to surgery and significantly lengthen our hospital stay.

Continue to Chapter 5: Back to surgery

 

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