Day 150: Family JAMboree - the homecoming of our son

Steve and I got to the hospital after we got Ella on the bus and Mimi off to daycare.

In cap & gown

We chatted with the nurses and confirmed that he'd had a slow night. It was not only slow, but he'd taken his entire meal by bottle that evening. It was as if he wanted to prove that he was ready for home life. Granted, he'd still come home on a feeding tube, but we had good reason to believe he wouldn't have it for long.

He weighed 6 pounds, 10 ounces. Not bad.

I went about distributing chocolates, thank you cards, and birth announcements as well as pictures of Jonathan in his graduation gown to all the special people who'd helped bring us this far.

Steve began to pack up everything. It is amazing how many things a baby accumulates in a hospital room after five months. His locker was not full - but we found ourselves with bags and bags of hospital gear, including about half a dozen pink buckets that had been used for this or that and would be tossed if we didn't take them. And shampoo, about a half a dozen half-used and then forgotten diaper creams (we are still going through our hospital stash a year later), feeding supplies, pacifiers, blankets, baby clothes, hats - both those he'd outgrown and those he still wore, momentos from big accomplishments, and a lock of hair from his first "haircut." Oh, that was a tragic razor-to-the-scull occasion from before he'd gotten his central line in. They'd run out of spots to start an IV, so they went for cranial veins. The vein under the shaved haircut had failed, and so they'd ended up putting a unicorn IV on him instead - middle front of his scull. Those were days we were glad were behind us.

Tossing the cap!  Let's get out of this joint!

The nurses and family specialists had gotten us a button to wear. It said "I'm going home today."  We wore it with pride. At his meal times we fed and changed him. And we then did a bit of waiting.

Mid-morning the doctors did their rounds. Around 10:00 a doctor dropped by to give us Jonathan's discharge papers. It was the length of a short novel. He worked through each page with us and made sure we understood all the medical stuff that had happened to our son over the past few months.  He made sure to go over with extra detail all the unresolved issues, like the incisional hernia that had sprung up after the ileostomy reversal, and the extra surgery he'd need at closer to a year old for a small birth defect that had been found a few months earlier.

There were a few surprises -- like I didn't know that in addition to the PDA, Jonathan had a PFO - a heart murmur that would probably resolve itself before his toddler days began -- but mostly it was just rehashing what we already knew. It was a very good review. I go back to the book even now to remind myself of near-forgotten terms or important details. I used it to figure out when his last blood transfusion was. It was an important detail, as he kept failing his newborn screen because his blood still showed adult hemoglobin - left over from his transfusions and not fully worked out of his system. We didn't get his newborn screen cleared until he was around nine months old.

Feeding him one last time before going home.

After going over the book, the doctor took another look at Jonathan. He smiled. Then he looked back at me. "You know..." he said, and then he stopped.

"What?"

He expressed that he didn't know how to say what he wanted to say -- he wasn't sure he should say it.

"Go ahead!" I said. After 150 days of this, I could take almost anything.

"Well, do you know that in some areas of the country - what I mean is - did you know that sometimes some hospitals don't resuscitate babies born at 23 weeks?"

"Yes," I said, "I know."

"Well, Jonathan is a perfect example of why we do." Then he called him a miracle. It wasn't the first time we'd heard it, but it was the first time a doctor had said it. Over the next year we'd hear a handful of other doctors utter those words.

I'm so glad you gave him the chance, and us the choice to try. Thank you, doctors, for being a part of this "miracle" in the making.

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We then had a meeting with the discharge nurse. She talked us through all the appointments and follow ups he'd be having in the next few months. She showed us where she had scheduled the appointment for us. She explained the places where we'd have to call first. There was a spot in the big book-binder of his medical history where we put business cards to help keep things straight. I cannot express how important that binder became to us in the following months.

Just like that, I became a personal secretary to a five month old. And even though I'd worked in administrative roles for over a decade, I needed every bit of knowledge I'd acquired to keep on top of his schedule.  Nine offices wanted to follow my son anywhere from once a week to once a month. NINE. Some were generous enough to stretch it out to once every three months after our first post-discharge meeting.

I was glad I'd gone down to half-time work.

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By this point it was nearly 1:30. Steve and I were hungry. Jonathan's noon care time was done and he was napping with a full belly.

"Can we ... um... we really want to take him home, but, can we eat first?"  We tentatively asked the nurse.

"Oh, go for it!" she said, "Take your time!  No one else needs his bed right now -- and this might be the last good meal you get together."

So we snuck down to the food court.

We were back within the hour. We got everything set and gave Jonathan one last meal. By 3:30 we were home.

After we both scrubbed in to our own home, Steve picked a wide-eyed Jonathan out of his car seat and started off our homecoming party with a house tour.  He first introduced Jonathan to Rosemary, the unsung member of our household - a gigantic rosemary plant that Steve loves and I think is ... well, gigantic in a less-than-complimentary sort of way.

Steve explained to Jonathan that Rosemary had bloomed for the first time ever (in her four year life) that month - just for Jonathan's homecoming.

Jonathan was either over- or under-whelmed. He fell asleep.

So Steve handed him to me and went to pick up Mimi. Ella was in an after school activity and wouldn't be home until dinner time.

Here's Mimi's reaction:

Jonathan slept well that night. The adventures of leaving the NICU and then being put into a new and unfamiliar spot were enough to wear him out.