Wednesday, December 4, 2013

Day 138 - 146: Happier days in the NICU

He had just needed to get over the last hump. He was so close. I knew that.

Even so, I was surprised at how fast things clicked into place. I was still seeking counseling for post partum anxiety or PTSD, and my son was leaving that whole world so very quickly behind him.  I said it was like he was running his own couch-to-5k, surprising all of us by his speedy progress. Every day he added to his list of accomplishments, and there were whispers of a homecoming.  He was going to graduate.  I stopped posting as much on his care page (where I typically put all the most depressing stuff) and I started bragging about my cute baby on social media sites instead.

Some serious guy time.
When JAM's dad got his PhD, I was glad. When I got my MA, I was tired. When Jonathan got his embroidered cap-and-gown from my sister, declaring him a NICU graduate, I nearly cried. I put it aside, full of pride. He was GOING to make it. And he would wear this cap-and-gown. I put it in his drawer at the NICU (you all can see it on the anniversary of his graduation day - it's less than ten days away!) Then I picked him up, just like that, just picked him out of his open crib and rocked him in my arms at bedside. I didn't even need to ask a nurse, I just needed to be careful of the monitor wires.  But even that didn't concern me. I'd been there long enough that I knew how to reattach them if they got pulled off.

He held his own heat. His monitor barely alarmed. He looked up at me and knew me. I called the nurse in to weigh him. Then I sat down in the rocking chair and took out a nipple shield. Maybe he'd take a little milk from me this time. We'd know if the scale went up when we weighed him after nursing. Sometimes he got a few mls on his own.  And when he didn't, we'd feed it through the NG tube while he was in my arms, so he'd "get the idea."  Perhaps my pumping days would go away after his NICU days ended.  I sang to him, I tucked him in, I wasn't afraid any more.

Some of what Jonathan accomplished in his fifth month of life (before he was a month out from his due date):

Only an NG tube, with a "so I can get my milk" mustache (of tape)

  • He was up to 5.75 pounds - and then a week later six and a half pounds. That's HUGE. My friend said "That's like the size of a full-term baby! ... A small full-term baby, but still, I've had friends who had babies that size."  'Bout time. He was only 4.5 months old.
  • He held his head up and moved it from side to side while on his tummy.
  • He was eating about 16 of the 50 mls (or about half an ounce) of food by bottle. His occupational therapist said he had a better suck than most preemies. I blamed his love of his pacifier.  He often was breathing too fast to take a bottle by mouth, though, so there was talk of having us trained in NG tube placement so we could thread the plastic down his nose to his stomach ourselves at home and insure he got the calories he needed.  Most NICU babies have to eat all their food by mouth for a few days before they're sent home. The doctors were willing to let us just take him. We weren't going to complain.  
    • (Note: While most third trimester preemies have to pass a feeding challenge -- eat all their food by mouth for a few days -- before they're allowed to go home, many micro-preemies come home on some hospital equipment, and many of them depend on that equipment for a year or more. We'd assumed he'd come home on oxygen, and probably a feeding tube too. An NG tube only was WAAAAY easier than oxygen plus a tube, so we were thrilled.)
  • He passed a hearing test
  • He impressed a physical therapist (although he was a little slow on some of the reflexes)
  • He developed an incisional hernia where the gut surgery had been.  It was cosmetic (and kinda cool when his bowels rippled) at the moment, but would need to be monitored and eventually fixed. That meant (sigh) another surgery.
  • Once his central line incision healed, he got to take his FIRST EVER BATH. Imagine waiting four or five months for a bath.

P.S. It is with bittersweet joy that I write this post. From here on out the pictures and updates will be joyful,and I celebrate that. At the same time, there's a little 3.5 pound baby boy named Andrew who was due to be born today. He's three months old. I want him to have the same happy ending. His twin has already passed. Andrew has just been diagnosed with PIE - emphysema in infants. He is on a vent and his oxygen is at 100%. His tummy is stretched and bloated. He's off all feeds. Things are looking bleak.  My son hit a critical point on his due date too (remember? that's when I cracked), and I remember how it was so hard to see. While I celebrate how good December was for us last year, I hurt for him, and I hurt for his parents. We had hoped they were nearing the end of their journey. Dear baby Andrew, we're walking with you over here. You are in our prayers today!

No comments:

Post a Comment

I love to hear from readers. Please post your comment below or contact me at