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One of his last days on a conventional vent - and finally
he's lost all that water weight.
Looking so much better. |
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One of his last days of showing off his beautiful brown hair
before it was covered with a CPAP hat. |
September 15 through September 22, 2012 (A year ago) - Things were looking up for Jonathan. We'd finally gotten a good breeze, crisp fall air filled our lungs after a summer of unusually high and suffocating heat. At least that's how I felt. There was a bit more spring in my step as the weather turned. We were nine weeks into this NICU thing, and finally we'd found our stride. It was still rough, yes, but he was still alive, and that was enough.
My girls were both at school -- Ella thriving in kindergarten and Mimi enjoying preschool. I was back at work, and while it was tough to catch up from eight weeks of maternity leave, I was so glad to see the students and my coworkers again. We were all adjusting to this new and busy normal. Steve was taking the mornings he wasn't teaching (Tuesdays and Thursdays) to sit in the hospital room and work on his computer from Jonathan's bedside. He'd sanitize the computer before he'd start to work, and he'd scrub in again before he'd touch Jonathan, but the ability to answer emails in J's hospital room allowed him to be around when the doctors came by. Also, when the nurses had a moment, he could get two or three to help him manipulate the vents so that he could cuddle with the little guy.
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| One of his first days on CPAP |
Reports from the NICU were positive. I'd call Steve or the nurses every other time I pumped, so a few times a work day. After his NEC/bowel surgery, things had been rough for a bit. He kept retaining fluid, and once they did start him on my milk again, it took him a while to digest it, leading me to be so afraid of another occurrence of NEC. Dilating the bowels helped get things going again, and ever since that first overly celebrated poop, three weeks after his first NEC surgery and about three or four days after we started him on food, things had been going great. His ostomy site looked good, his central line looked good, and I was able to hold him nearly every time I went in. To me, that was worth the world. Except, of course, that I had a cold, so I didn't go in as much, and when I was in, I was wary to hold him. But STEVE could hold him, and again, THAT was something.
Also, while the previous week he'd fluctuated between needing and not needing the conventional vent, this new week brought new strength to Jonathan's tiny lungs. He was placed on NIPPV, a CPAP machine that gives continuous positive airway pressure as well as puffs of additional pressure to stimulate breathing. After a few days, he graduated from that and was breathing with only the support of a CPAP (Continuous Positive Airway Pressure, in case you missed that the first time) machine. A CPAP is what is worn to bed for those with sleep apnea. It seemed like "no big deal," a step in the right direction. He was breathing on his own. The machine was a quiet bubbler that, unlike most NICU machines, actually provided a bit of ambiance to the room. On top of that, we'd started being able to put Jonathan in clothes. A friend had knitted a sweater that worked perfect to cover up his ostomy while still providing easy nursing access to his central line (nurses had to observe that on a regular basis) and ostomy site. If you want to make a NICU baby a cute, cuddly, humanizing outfit that also works well (for most everything except arm IVs) I recommend this pattern.
On the 19th of September I went in to help with Jonathan's evening cares. He was two months and two days old. And I got him mad. For the first time since the day he was born (when he squeaked upon entering the world), Jonathan cried an audible cry. He had opinions and he was voicing them. I couldn't have been prouder. Yes, he was mad at me for pulling a cord. But he was well enough to BE mad. My heart was a bit lighter that day. I'm sure I smiled at everyone as I left the NICU. "My son was mad at me. He was screaming these little squeeky screams!" I'd have said, if they'd asked about the silly grin. "Isn't life wonderful?"
A year ago he also finally lost all his water weight. He got down to 2 lbs 6 oz. His highest weight had been 3 lbs 11 oz. He was carrying over a pound and a quarter of water on a two and a quarter pound frame. Poor kid! And then, just to add to my delight, after we started feeding him milk again, he started gaining. By a year ago, he was twice his birth weight at a hefty 2 pounds, 10 ounces.
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| Tinkerbell's fourth birthday |
A year ago we took a break from the NICU the weekend of Mimi's fourth birthday. We drove to the hospital, visited baby J, then drove up to great grandma's house several hours away for an over night. Grandma joined us at her mom's house, too. We'd only go over night, we told her. We couldn't stay for a weekend as usual, because we HAD to see Jonathan once each day. It was all we could do, it was our duty.
Great Grandma's house is near a lake. It's one of the great lakes, so it feels more like an ocean. Add the cool fall air and the warm sun, and it's nearly perfect. Or it would have been. I slept in the basement most of the time, trying to rid myself of the cold. Steve and the girls went to look at the lighthouses and stones along the beach. Mimi talked about that birthday with her two grandmas for the whole next year. How she'd gotten to see Grandma and Grandma, and how she'd dressed like a tinkerbell.
