A new day

It's been an emotionally trying week. Several months ago, I wrote about a story of a mother starving her children. At the time, I wrote that starving your children is harder than it looks. I stand by that statement now.

Of course, I'm not starving him on purpose. There is food available to him 24 hours a day. There are usually no less than 3 cups of various liquids available at any time as well. Really, I just spent the week letting him starve himself. It is physically and emotionally draining for both of us.

The first two days, he drank nearly nothing. He ate averagely, and his mood was okay. The third day, I saw some improvement. He drank just under 6oz throughout the day, but that was 6 oz more than he normally would and I felt pretty good about it. Then he backslid again, taking only a few ounces of milk from a syringe the next day; my confidence waned.

The next day brought elation. He drank approximately 15oz all day. I told a few friends that I thought we'd turned the corner. We were done with the tube. While I was supremely excited, I was also fretting. While he interest in food was expanding again, he couldn't keep up with his caloric needs and I could see him wasting away in front of me. His hip bones seemed to taunt me at every diaper change. His ribs lost their ticklish allure with no padding on them. His energy level was pretty decent, his mood was not. But I was still resolute- this was it.

Thursday night I decided that I needed to tube him a little bit of just water. He hadn't had more than 15oz of hydration in any given day all week and I was beginning to worry about his kidneys. I snuck in long after he was asleep and bolused in just 5 oz of plain water. He wouldn't be up for another 9 or 10 hours. He'd be thirsty by then, surely.

Friday was my birthday. Robbie decided 34 was the year for anxiety. He refused to drink nearly all day. By mid-day I was fighting tears. I tried to tell myself that it was just the usual tube-weaning protest. At one point during the week, he'd even found his extension tube and came running towards me with it with an expression that seemed to read "don't worry mommy, I found it, we can go back to this now..." He knew what was happening and didn't like it. I told myself that he was just testing me. But something felt off.

I talked to Becky and fought the urge to cry. She rightly called me on my guilt about the water. She assured me there wasn't a wrong thing to do. She didn't think the water was mistake, but that even if it was, that we'd all made mistakes along the way and nothing is so big that it can't be overcome. They were words I needed to hear and I felt better afterward. I decided to feed him some baby food that afternoon. God knew he needed the calories and the hydration they provided would make me feel better. He drank a few ounces later in the evening, but very little. He ultimately consumed only 3.5 ounces for the entire day.

Saturday was only slightly better, totaling around 5 ounces. Today he might have reached six. He sipped his milk occasionally, showing more interest in water for my glass than any of his (and yes, before you ask, he has his own open cup available as well.) and I was glad to oblige him.

There were successes along the way. Friday, he absolutely insisted on having a chocolate covered raisin one day. As he won't eat chocolate or raisins, I figured he'd take one bite and then spit it in the floor, but I was gladly wrong. He loved it and asked repeatedly for more. I wouldn't be surprised at all if 1/3 of his calories that day came from Raisinettes. Towards the end of the night he started spitting out the raisin skins, but he was still sucking down the chocolate which was fine with me. At this point, calories are calories, no matter the source.

Today he demanded a bit of my lunch which was a fairly spicy seafood pasta. I offered a noodle and he barely contained a shiver of disgust. But when I gave him a bit of a scallop he was in heaven. Becky finds it hysterical than he won't touch a Hershey Kiss but he demands shellfish. What can I say? He's a savory kid.

We also learned a lot about his preferences. During the 2 days when he was drinking well(ish), he made it very clear that he did not like the vanilla carnation instant breakfast or the chocolate milk I offered. He also turned his nose up at pretty much every juice I offered. He did take a few sips of apple juice but really only if I let him drink it directly from the can. Mostly, he'll take plain milk or water, please.

Today I'm able to focus on the positives. Had I written this on Friday, it would be different. I felt defeated & broken. I had failed him. Those feelings bubbled up again tonight when I started up his feeding pump again for the first time in 9 days. I thought I was okay until I could hear it pumping and I had to fight back to the tears.

It wasn't unlike hearing the breaths from the ventilator machine back in the NICU after he'd failed to tolerate CPAP one more time. It was disappointing and heart breaking and I wonder if I'll ever see the end of it. But it was also almost a relief. If he couldn't do it, thank God for a machine which could. At least I knew he was okay for now.

I'm only giving him water tonight, just 16 ounces. His caloric intake has improved over the last few days, consuming about 75% of his needs by mouth. I don't want to short circuit that. Hopefully his body will continue to recognize that it needs more and he will continue to eat more and more. I'm at least willing to trust him enough with food to let him sort it out for a while longer. But I couldn't continue that with hydration. I worried far too much about his organs to let dehydration continue any longer.

Tomorrow is Robbie's first day at the new childcare center. This adds another layer of anxiety to everything, of course. I have no doubt that he'll love it and they'll love him. Even the average kid has a bit of a learning curve in a new situation and Robbie's far from typical. The new teachers will need to become comfortable with his G-Tube. They won't need to use it, but just the sight of it is upsetting to people who aren't used to it. They will need to learn to feed him. And of course, there are the corn issues. The kids are fed family style there, so there will probably be some growing pains to keep him out of the unsafe food and make sure the he has access to all the safe food we can get into him.

I hope that he'll trust them to feed him right away. I hope that he'll see the other kids eating and drinking and climbing and playing and talking and he'll want to join them. I hope that someday I will be able to trust that he won't let himself starve to death. Today isn't that day. Thankfully tomorrow is a new one.

--Trish