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Posted on Feb 3, 2018 in Down Syndrome, Feeding tube, Health, Parenting | 0 comments

Feeding the Baby, Part 2: We’re FREE

Feeding the Baby, Part 2: We’re FREE

Feeding the Baby, Part 2

Redmond’s first feeding

My son, Redmond, is 11-months old and thriving. He was born with congenital heart defects, persistent pulmonary hypertension, bi-lateral hydronephrosis, and Down syndrome. As a newborn, he needed a ventilator to breathe and was on ECMO for six days. Too heavily sedated to nurse, he required a feeding tube. He never learned to nurse or take a bottle effectively. In Feeding the Baby, Part 1, I explained our journey to get him to eat by mouth.

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At the end of 2017, I detailed what it took to feed Redmond during the months leading up to his g-tube surgery. The surgeon gave us a plan that thrilled me! After surgery we were to only feed him orally during daytime hours and make up the difference overnight through his feeding tube.

That process was significantly easier than what we’d been doing, but it had it’s difficulties too. Every day I carefully calculated everything Redmond ate and drank by mouth. Before I went to bed, I totaled it up, subtracted it from his daily goal, and prepared his overnight feed. His milk went into the feeding tube bag. Then I set up the pump, primed it, and hooked it up to the end of the tube that went directly into Redmond’s stomach. I set the slow rate at which he was fed and went to bed.

Prior to overnight, continuous feeds, Redmond slept soundly for 12 hours most nights. With continuous feeds, almost every night we woke to Redmond’s cries. Sometimes he had thrown up, sometimes his tube had disconnected and spilled milk and stomach contents in his crib, and sometimes he was just uncomfortable. We changed his sheets and pajamas a lot. We didn’t get as much sleep as we would’ve liked, but it was still a lot easier than before.  Click here for more.

We took our show on the road after Christmas, packing plenty of feeding tube bags, pajamas, and sheets. We stayed with my sister, sleeping in the same room as Redmond. In the new environment, he could barely sleep. He wiggled and groaned, crying out in his sleep, alarming us. No one slept well. Exhausted, we shut off his feed, and he slept great for the rest of the night. Night after night this happened. Surprising us, the result was that he started eating a lot more during the day.

One method of tube-weaning is to induce hunger by reducing tube feeds by 30%, then 50%, etc. I had been planning to start the weaning process in a month or two, but Redmond had other plans.

The lonely feeding tube pump

Once we got home, I chose to continue cutting his overnight feeds. As I cut down, he continued to increase his food during the day. A week later, I took the very scary step to cut his overnight feed entirely. The next day he ate nearly all his required calories! But that day he also got weighed and had lost a little weight. His weight hadn’t dropped in the last few months, but he had grown quite a bit longer. His lack of weight gain wasn’t good, so the next night I returned to tube feeding him.

I was very conflicted for the next few days as his oral intake dropped back down. I suspected that if I stopped his overnight feeds altogether, he would eat enough. I didn’t want to hurt him though. As I prayed about it one night, I found a new confidence. I am his mother and God has given me responsibility for him. I need to trust my instincts. That night I decided there would be no more overnight tube feeds.

The next day, Redmond ate 30 more calories than his goal. I was on cloud nine. Over the next week I carefully counted every calorie, attempting to balance protein, fat, and carbohydrates with enough liquid to keep him hydrated. I fretted over his unwillingness to drink much milk and the need babies have for the nutrients in it. But he kept on eating and drinking enough to get the calories and nutrients he needed.

One week.

Two weeks..

Three weeks…

No tube feed!

Some days he didn’t eat as much as others, but he would make up for it on other days. His daily average calorie intake was exactly what he needed.

Warned that over the winter he could get sick and need his feeding tube for hydration, I tried not to get too excited. During week three, he got a cold. Severely congested, I watched him carefully, but he kept eating just fine. No extra tube-feeding needed.

Tomorrow is the end of week four. We have met with his dietician, cardiologist, and other members of his medical team. Everyone is cautiously optimistic that he is done with his feeding tube. His cardiologist expressed the most confidence, grinning widely and telling me that he looks like a very healthy boy!

These days feeding looks like this: four meals a day, consisting of baby oatmeal mixed with high-calorie milk, strained fruits, vegetables, and meats, yogurt, custard, and pudding, and finger-foods like Puffs. He sits in his high-chair, excitedly opens his mouth for his honey bear straw cup and spoon-fed food. Each feeding takes about 15 minutes.

ONE HOUR A DAY OF FEEDING.

ONE.

From 14 hours a day of feeding when he was a newborn to one hour now…

We are free.

It’s time to have a big party. I don’t know how to express my thanks and praise to God and our community any better way. We have been so loved and supported through this hard time. God has done miraculous things.

In the Old Testament, when God performed miracles He ordered the people to celebrate with a feast. It makes sense to me. We won’t be feasting for seven days, but we’re planning to take three hours on a Saturday to celebrate. And the next day, we plan to dedicate him to Jesus and have a feast after that.

It’s time to show God our praise and thanks. We are rejoicing with exceeding great joy.

If we were chatting over a cup of coffee, what would you tell me?

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