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 sixth chapter looks at J.P.’s eating struggle before discharge. To start at the beginning of the story, click here.
With J.P.’s shunt in place and his sodium level stabilized, attention turned toward making sure J.P. could eat and grow.
Because of the surgery, we were now residents of the neonatal intensive care unit, which meant fewer visitors and limitations on when we could enter and leave J.P.’s crib.
I often said J.P. could have been the quarterback on the NICU football team. He was by far the biggest baby there at 8 pounds 4 ounces, but despite that, getting him to eat was becoming a chore.
It was a vicious cycle. J.P. had to consume a certain amount of breast milk to grow, but he didn’t seem all that interested in his job at hand.
To make things worse, he had to finish the bottle in a certain amount of time. If he didn’t complete the task, the nurses said he was using more calories to do the job then he would be gaining by eating.
Paige and I were getting frustrated. We simply wanted to take our boy home to Lake Mary.
All of the nurses seemed to have their own tips to try to get J.P. to eat, but despite our best efforts, he began to lose weight.
A Nasal-Gastric tube was inserted, so whatever he didn’t consume in the allotted time could just be put into his stomach.
It was a short-term solution, but we didn’t want to take J.P. home with a tube sticking out of his nose.
The days dragged on, and the bottles seemed to get bigger. There were nights when we would be feeding him, look over, and he was asleep.
There were days when we he would start eating really well, and two minutes later, stop and be done — all under the pressure of the ticking clock.
I remember one time he was eating and the milk was going down his cheek. Paige said, “Jeff, he’s not drinking it,” and I said, “I don’t care. It’s no longer in the bottle.”
Not only did J.P. have to drink his milk, he also had to take his medicine. I felt like the cards were stacked against us, and I wondered if we would ever be home together as a family.
Meanwhile, our thoughts were also on what would happen when we did get discharged.
We didn’t have a nursery ready, but the bassinet that my sister, Catherine, and I used was at our house. My mother had it cleaned and readied for J.P.
Paige’s parents arranged to get the crib used by our niece, and our MYAM home group was also planning something big when we got our walking papers.
But before any of it would be needed, J.P. had to eat and get the NG tube removed.
It didn’t happen fast. We spent 19 days in the hospital recovering from J.P.’s surgery, monitoring his sodium level and making sure he was eating quickly enough to gain weight.
We came to know many of the nurses in the neonatal intensive care unit and developed a place in our heart for Florida Hospital for Children that has continued ever since.
While we were anxious to go home, I will say I was a bit apprehensive about not having a health professional by my side when J.P. made a strange noise or a weird jerk.
I wondered how I would know if he was OK without being on a heart monitor or I couldn’t look up and see his oxygen level.
As distressing as it was to be hospitalized, at least there was the feeling of knowing he was safe there and with people who were a whole lot more experienced in baby’s than I was.
I did get good at the whole bathing thing, swaddling and changing diapers, but I still dreaded the feeds — even when he did get to where he would eat. There were some medicines he just didn’t like, and they were the ones that were most important to keep in his system.
Being the parent of a child with special needs wasn’t going to be easy, but I knew Paige and I would learn what we needed to know, and we had a great hospital standing behind us if things got out of hand.
When we learned it was time to be discharged, Paige and I packed our bags and headed home to Lake Mary with our boy in tow.
We passed the NICU medical director, Dr. Eduardo Lugo, in the hallway and Paige said, “You can’t have him. He’s going home.”
Lugo laughed, and we departed for home, but we got a big surprise when we pulled in our driveway.
Continue to Chapter 7: An incredible gift
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