Sunday, February 2, 2014

Remembering the day he nursed.

Q: When was your micro-preemie able to nurse?
A: At six months old (two months adjusted age). Exactly a year ago today. Once.

I remember being hooked up to the breast pump in the NICU and at home many times a day. I added up the time once, and between pumping, storing, thawing, feeding, and cleaning pumping supplies (we don't have a dishwasher) I spent between 8 and 12 hours a day feeding my son. Thankfully I didn't do it alone, as Steve helped with cleaning and feeding parts of the job. Ella believed she could help with feeding, too, but the closest she ever got was us letting her hold the bolus once or twice when a feeding was gavaged (put through his feeding tube with gravity taking it to his stomach).

I remember my NICU nurse being surprised when I was still exclusively pumping food for JAM at four months. Jonathan had only ever had my milk, often with fortifier added for extra calories. "Not many stick with it that long" she said.  I didn't know it then, but I'd be sticking with it for another year.

It had been easier going for me than for many NICU parents. I had been in preterm labor twice in the three weeks before his delivery, and my body was ready for him. It was difficult to sit up and pump after a c-section, but it had come with rewards. After five minutes, I had a few drops of liquid gold - colostrum for my son. Within two days my milk had come in. I was fortunate.

I told the nurse that I was investing so that things would be easier later on. If I could keep producing milk, eventually I'd be able to be bottle and apparatus free -- with just me and Jonathan all that was required for a meal. That's how it had been for my girls. I would grab a few diapers and wipes, and we could go out on the town together. No worrying about if I had enough food on hand, I always had food.

And so that's how it was going to be with my micro-preemie, I was sure. Eventually he'd learn to eat by mouth, and when that day came, I wanted to be ready. Nursing my kids was always a special bonding moment, and I'd missed so many other moments with JAM, this is one I was going to work for.

In the NICU we tried with nipple shields - thin plastic that helps keep the suction in place so that babies with a weak suck can still get food - and Jonathan was able to get a little milk. Most of the time he only got two to three mls of food, but once he got over 10 mls. We were delighted.

When we came home they told us he wouldn't be on a feeding tube long, that he had a strong suck and just needed to learn how to take a bottle.

We worked with him every day to get that feeding tube out. I had too fast of a flow for him, so unless he was doing very well with his breathing, we stuck to bottles most days.

A year ago Steve was slow in warming the bottle and Jonathan was very hungry. So I gave my baby another shot at nursing.  By the time Steve came in with the bottle, Jonathan had the hang of things, and so Steve took the bottle back with him and Jonathan kept nursing. It was beautiful. I found myself holding my breath in awe. He was really doing it.

About twenty minutes later Jonathan was in a milk coma. He had fallen sound asleep, warm and relaxed in my arms. It's a different sleep from other sorts of baby sleep. If you've seen this in a newborn, you know what I am talking about. His mouth still moved as if he were nursing in his dreams, but the rest of his body was heavy and relaxed. He was full, satisfied and safe.  My heart was full, too, completely in love with this little boy who had finally done what I'd dreamed for six months he might do. I was so glad I'd not stopped pumping. I was sure this moment was a sign of all the good things that were around the corner.


It wasn't.

That was the only time he nursed for a full meal. After that he became too tachypnic (fast breathing) to eat even by bottle. We found ourselves only able to feed him by mouth once or twice a day on good days.

Within a few months we were meeting with a surgeon to talk about placing a more permanent feeding tube. When we finally got steroids on board for his lungs, he started breathing better again, but it would be another four to five months before he master a bottle. He never wanted to nurse again.


By the time I figured out that things wouldn't be the way I'd dreamed, I'd gotten used to our new routine. I continued to pump until just a few months ago, when I lost five pounds in a week and my body decided I was done feeding the baby. He was over a year adjusted, or over sixteen months old.

Thus for over a year, close to a year and a half, JAM got antibodies from my milk. I gained a new respect for pumping mothers.

And through this I gained several more
Lessons Learned through a Micro-Preemie:
(You know, the name of this blog?)

1. Things will not always go as planned.
2. A micro-preemie's timing is his own, and setting schedules is silly.
3. Having your eye on the future is good, but hold on to those dreams loosely. Things change in unexpected ways, and once you've adjusted, you may find it's not so bad after all.

I also gained a deep freezer full of milk. See?

Don't be jealous - JAM was "NPO" too much of the
first four months of life - also not what we wanted.

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