Sunday, October 27, 2013

100th day - becoming a baby

In many parts of Asia, your 100th day of life is worth celebrating. We received 100 day shoes from friends in China. They were much too big for him, so we didn't even try them on, but we DID have much to celebrate.

Little JAM was becoming a real baby.

His accomplishments over his 14th week of life were as follows:
Comfy PJs and my favorite hat (Says "sparrow" in ancient Greek)

He grew. At just shy of 14 weeks, he weighed in at 3 pounds 11 oz.  The hospital had just changed their policies, allowing a baby to try to retain their own heat at 1.6 kilos (previously 1.8 kilos) and so they popped the top on his isolette and we got to dress him in comfy fleece pajamas for warmth.

He began therapy sessions with both a physical therapist and an occupational therapist. His occupation is, of course, being a baby. So he needed to learn how to be a baby. This included (primarily) learning how to eat from a bottle.

Steve went in as usual the morning of his 99th day and met with the occupational therapist for his first session. And Jonathan ate from a bottle. Only 2 or 3 ccs, or 1/10th of his normal meal, but it felt like a huge success. There was much to celebrate.

That evening I came in and found Jonathan cranky. He was hungry. He was on a strict feeding schedule, so I couldn't give him food, but I could give him love. For the first time since his birth, I simply picked him up and held him, without the help of nurses or respiratory therapists.  To top it off, as he was dressed in a comfy baby outfit, not one of the small gauze-sized gowns that he'd been wearing for the last three months, he felt more like a real baby.  A normal baby, clothed and hungry, being comforted by his parent.
Sleep smiles.

On his 100th day he weighed 3 lbs and 13 oz.  This is two ounces higher than his highest weight in September, when he was so severely swollen from edema likely because of kidney failure and NEC. This time, though, all the weight was GOOD weight, and we rejoiced.

Things continued to look up the rest of that week. Steve fed him and he ate 1/4 of his dinner by bottle on his 102nd night. On his 103 day, he pretended to nurse. It wasn't successful, but it wasn't an entire failure, either. A year ago today, at 103 days old, he weighed 3 pounds and 14 ounces. The doctors were discussing scheduling his ostomy reversal as soon as he hit two kilos. They had dialed up his IV lipid intake just a little bit as a way to get him there. Cheating a bit, yet, but he was so close.

He was still on nasal cannula, but requiring less and less help each day.

On the home front, a hero from church realized that Steve and I weren't seeing each other any more, and that we hardly ever got a chance to talk. He volunteered to set up a babysitting schedule for us. He said he could get someone to babysit our kids nearly every night, but we knew the girls needed us too, so we settled for a twice a week date night. This hero handled everything, coordinated schedules, and then simply told us who was coming over. The dates invariably brought us to the hospital. Sometimes we'd go out to eat before hand and talk about our days. Unhurried talk. It was hard to get used to at first. Then with bellies full and blood pressure down, we'd stroll into the hospital to do Jonathan's evening cares together.

I mentioned my own exhaustion in an earlier post, but I think Steve felt it more than me. He felt the drain of being a full time parent, full time teacher, NICU dad, and the pressures of finishing up the research projects he'd started the summer before. He never had enough time in the day. In our exhaustion we hadn't seen each other, and our pelting conversations turned into misunderstandings and added tensions. These dates were essential for learning how to renew a healthy relationship.

 These dates did something else for us, too. We started to learn how to parent this baby together. It had been so long since we were both in the hospital, able to look after Jonathan as a couple, that we'd developed our own routines for Jonathan care, and we weren't really too aware of how it could be done differently. On these dates I learned how Steve liked to feed Jonathan, how he changed his diaper, etc. In fact, Steve got to teach me how to feed our son, a switch from life with our older two children. I saw how much we'd each grown in confidence with this little baby. And most importantly, I learned from the doctors and therapists that though our ways of doing things were slightly different, they were both correct. I'm so grateful to have figured that out BEFORE we took Jonathan home and fought about proper holding techniques.

Mimi shows off the blanket I knitted for her
while in the NICU.
Ella cuddles under her own 5 year old baby blanket.
Meanwhile at home our girls got the fun of a game night or trip to the park with someone who wasn't utterly exhausted. These babysitters were heroes. They'd spoil our children. Sometimes those kind souls would even wash our dishes, giving us a greater sense of calm when we returned home. (Note to all NICU parents out there: invest in a dishwasher. We now really really wish we had.)

A year ago we were feeling blessed, on all fronts.  Yes, the journey was long. But we were not alone in that journey.

We were celebrating JAM's 100th day.


JAM and Steve discuss the cost of milk. (A glimpse of Steve's parenting style?)

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