The J.P. Story: An incredible gift

Posted on September 5, 2014 by jeffcuz

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 seventh chapter looks at J.P.’s discharge and the incredible ways our church helped us get prepared for life at home. To start at the beginning of the story, click here.

With discharge papers in hand, Paige, J.P. and I headed home to an incredible surprise awaiting us at our Lake Mary home.

The Married Young Adult Ministry at Northland Church turned the guest room of our home into a beautiful nursery for J.P.

On top of spending a ton of time at the hospital keeping our spirits up, they also looked ahead and purchased what we would need at home, including a diaper-changing table and the all-important Diaper Genie.

Everything was assembled, put away and ready for J.P. when we walked through the door.

Paige’s parents provided a crib they had, but it was a huge undertaking, and my family is forever grateful to them for it.

We arrived home and took a deep breath as we knew we were beginning a whole new life that I still didn’t feel entirely prepared for.

I was somewhat nervous and even missed having a health professional at my beckon call when I didn’t know what to do next, but between the both of us, I guessed we would find our way or pick up the phone if something totally out of the ordinary happened.

Little Suzy's Zoo — The nursery was done in the theme of Little Suzy’s Zoo.

While we were in the hospital, we made arrangements to be placed in the care of Dr. Ben Guedes, a legendary Orlando pediatrician with a heart for children of a medically complex nature.

It’s amazing how many times we asked the question of who we should see after discharge and kept getting the same answer.

“Oh, you’ll definitely want Dr. Guedes.”

“Dr. Guedes is amazing.”

“You’ll love Dr. Guedes.”

Needless to say, he was highly recommended.

There was still a bit of trepidation about J.P.’s weight and making sure he was consuming enough calories in a day. It was probably the single biggest source of stress for me during those first days at home.

J.P. napping — J.P. takes a nap in October 2002.

We still had to give him several medications, so we would add it to a small amount of breast milk and then have a bigger bottle of plain breast milk waiting for him after the medicine.

There’s nothing like trying to reason with a weeks-old baby to get him to take his medicine. It still took too long to get the job done at times.

Northland Church had one more surprise for our family that I’ll never forget.

Since Paige never had a baby shower, the church congregation came together with a baby celebration. I believe there were a couple hundred people there, and everyone got the chance to meet our little miracle boy.

J.P.'s diaper-changing table — J.P.’s diaper-changing table was filled with supplies from our MYAM friends.

We received more gifts than we could ever imagine, proving again that God will provide to those who trust in him. There were clothes, diapers, supplies, photo frames, etc. It took several cars to get it all home, and we will be forever grateful to those who organized such a special event at an amazing time.

There was still a long road ahead, and many unanswered questions about J.P.’s long-range prognosis.

But Paige and I felt blessed to have a very supportive family, many friends and an amazing church standing behind us as we embarked on a journey we never expected to take with a wonderful son who was bringing us a lot of love.

Continue to Chapter 8: Early steps