Wednesday, October 27, 2010


If I've said it once, I've said it a thousand times- parenting is not for the faint of heart. Tube weaning continues and I guess it continues well, though how much I really believe that varies day-to-day, sometimes hour-to-hour.

He's down nearly 2 pounds. He didn't really have 2 pounds to spare. He wasn't skinny before, but he was definitely slim. He really hasn't gained weight in months, but he had gained a little height, so he'd already gotten quite slim. Now he's downright skinny. I dread taking his shirt off and when he leans over a bit and I can see each of his ribs, I literally have to look away. He appears to have stopped losing weight, which is good. But dear God, I need him to gain some.

The last few days I've had to fight the urge to tube him some calories time and time again. I'm still not ready to say that I won't. Right now he's only getting 14oz of water and 2 tsp of olive oil in the tube. I keep considering switching out some of the water for milk. Right now 18 calories per ounce sounds like heaven.

He drinks at least a little water every day but does not show much interest in drinking anything with calories in it. We did have a good report last week that he'd finished the few ounces they put in his cup and then they refilled it and he drank a little more, but that was an anomaly. The only thing keeping me from tubing more calories is the fear of turning off any trigger his body has that eating equals living.

He really is eating well, honestly. There are bad days, certainly. Sunday he had a meltdown (related to being two, not related to eating) and refused to eat anything except two slices of American cheese for dinner. But then he woke up at 3am starving and proceeded to eat 36 Cheez-Its before finally deciding he could sleep again. (Yes, I counted. It was 3am, what else was I going to do?) We also have Hallow Leg Days, which may as well be called "Fill Trish's Soul" days for how good they feel. Mostly we have what I would deem adequate days. If we could just get even a paltry amount of liquid calories into him, he'd be in far better shape. For now, I just have to be content to see him drink water.

He definitely has turned a sharp corner with drinking. While he's not drinking enough that I feel like I can further reduce his night drip, he now reliably drinks SOMETHING every day. He really prefers an open cup to just about anything else. This leads to a lot of messes in our house. He is slowly understanding that you don't have to tip the cup completely upside down to get something, but it is a bit painstaking. You don't dare help him, though. He's two now and needs to do it by himself. Any attempt to guide the cup so that he doesn't half drown himself results in him throwing the cup across the room. We now have an official "time out" spot with which he is becoming familiar.

I feel pretty confident that he's going to get there (wherever "there" may be) with drinking soon. Soon to me means hopefully before he's 3. With Robbie, you never know. It could be tomorrow. He likes to do things in bursts. The question for me now is if or when he will start to eat and/or drink enough to not just survive, but thrive.

I feel almost selfish or ungrateful for saying that. The fact that he is now eating enough to survive is incredible. It's been two years since I've had confidence that he could or would. It will be two years in November since his eating went dramatically downhill. I still have a running excel file of everything he's consumed the last two years to prove it. It starts November 14, 2008. We actually kept track on paper before that. The really interesting thing about that (beyond being a shining example of my OCD) is that it STOPS on October 18, 2010. Yes, that's correct, I've stopped charting his food intake.

Don't get me wrong, I still do a mental calculation of everything he consumes. I'm a walking encyclopedia of the caloric content of anything remotely toddler chewable. But I'm not writing it all down, adding it up and calculating the ratio of calories to kilos of weight. The reason? It's too hard now. He is now, at 27 months, finally off baby food. There are still a few containers sitting in a bowl where he can get to them if he wants them and I'll probably try to sneak them in for a quickie meal on a busy Saturday sometime, but that's it. He now eats table food just like a big boy. And it's a lot harder to keep track of. You cut a grilled cheese into 100 bites size pieces and then try to keep track of how many eat eat, how many he threw and the cat ate, and how many are left when he's done.

At daycare, it's even worse. The kids steal food from each other all the time. Things end up in the floor from who knows where. Sometimes extra food gets shoved at each other. I had to stifle a laugh the other day when one of my favorite classmates of Robbie's absolutely INSISTED that Robbie eat a piece of his chicken. Robbie was having no part of it. It was good to see I'm not the only one who can't force him to eat. The reports home say "turkey sandwich- all, green beans-most, apples- none." but I don't know how much turkey was on the sandwich or what the serving size of green beans was. I know that they tell me he's one of the better eaters in the class and I have to accept that. I make sure to keep them stocked with high calorie snacks (since most of theirs are not corn-free, I supply almost all of his from home) and hope for the best.

I can see improvement all over the place and it makes me feel good, but one look at those ribs again and my own stomach starts to churn. Intellectually, I know this is temporary. We're only a month into a very real tube-wean and the weaned kids often take months to start to gain again, but sometimes, I don't know if I have it in me to keep going. I have a drive to nourish him and no matter how much my brain says this is good for him in the long run, my heart aches to fix it now.

As much as it is difficult to watch Robbie go through, it's also very isolating for me. When Robbie is having a tantrum because I told him he can't climb the table and jump off and I need to commiserate, lots of friends can nod and smile and chuckle and tell me that it does get better someday. But Robbie's unique in a lot of very good and very frustrating ways.

As uncommon as it is to have a tube-fed kid, it's even more uncommon to find a family who has weaned from a tube. Becky gets the brunt of my neurosis in hours-long late-night phone calls. But the rest of the day, I'm just wringing my hands hoping I'm not fucking him up any more than absolutely necessary. People ask how he's doing and I answer that he's doing well, but like everything, the answer comes with an asterisk. "He's doing well*."

*he ate yesterday and even drank an ounce of water, which is gobs better than a few months ago, but he still has a tube and doesn't really talk and I don't know if it's him or because I'm an utter fuck up as a mother.

I never speak the asterisk aloud, but some people will go on "Oh good! So he's eating now?" and again, I have no idea how to answer that. Yes, he does, but not quite enough and yes, he still has a tube and no, I don't know when he'll get rid of it, but if you could consult your magic 8 ball, I'd kinda like to know, too. Being polite, though, I usually just say he's getting there and try to move along. It's just not something that your average person understands, and if one more person asks if I've tried feeding him ice cream, I'm afraid I'll end up in jail. The headline will read "Mother of Non-Eating Child Arrested for Stabbing Man with a Spork." I wonder if they'd let Robbie visit during chow-time? He eats better in a group.

All in all, I do a lot of internal hand-wringing. I think I'm outwardly holding it together pretty well, but there are days I feel like I'm holding on to the ledge of reason with just my fingertips. I'm just waiting for Robbie to throw me a rope.


Friday, October 15, 2010

Worth it

As much stress & anxiety I felt about tubing water into Robbie, I don't regret it at all. I almost hesitate to write down how well things have been going. I'm a little superstitious, what can I say? But there is no denying that things are different now; different in a very good way.

I was worried about him starting the new childcare center because of his feeding issues. I knew the adjustment would be okay. He's a resilient kid who rarely sees a stranger. He likes people. I figured it would take a few days to really relax, but he'd do fine. However, I was very worried about his feeding issues. Would he eat? Would they let him feed them? Would they be patient enough to get him to eat? Would they take his corn allergy seriously? Would they remember his rules? Man, did I have it wrong!

He did adjust to the new people pretty well. We are having a bit of clinging at the drop off. Not so much that he doesn't want to stay, more than he doesn't want me to leave, but as long as I stay and hang out for a few minutes first, he does fine. Sleep, however, was elusive. He finally took his first nap this week on Tuesday- his 7th day at the new center. I was beginning to worry he was going to stop napping altogether and we were not ready for that.

Eating has been amazing, though. Our first day, we went through the menu and marked through anything with corn. They asked a lot of questions. I demonstrated the tube, they asked good questions. I was apprehensive and they were quick to put my fears at ease. The first few days, they fed him separately from the other kids in an effort to keep him from the corn. He ate well. They called several times to confirm what he could and couldn't have. I brought in several corn-free alternatives in an effort to keep him similarly to the other children. The teachers seems genuinely excited to report his progress each day.

At first, he didn't drink at all while there, but he would come home and drink a little each night. He has more interest in an open cup than any kind of sippy or straw. He frequently comes and taps my water glass, requesting a drink. It's not a lot of volume, but a few ounces each day. It gives me a little thrill each time.

Every night, his report would indicate good eating. He now sits at the table with the other kids. One day when I dropped him off just as lunch was being served, they served him first. As they placed a plate of chili mac in front of him, I thought "yeah, okay. It'll be all baby food today." But before I could even finish my negative thought, he picked up a piece of macaroni and ate it. I had to pick my jaw up out of the floor. Every day has been that way. One report indicated that he'd eaten some carrots. I went in the next day and asked them what the hell kind of magical carrots they are serving there. Peer pressure is a magical thing.

The teachers are fantastic about reading his needs and doing what they can to get more calories into him. Several days he's had no baby food at all because he's eaten so well. But they still added calories to his food, trying to help beef him up a little. They are definitely part of Team Robbie.

This week he has started to drink small amounts at daycare as well. It's not a lot. An ounce here or there. But he's taken in enough that last night reduced the water I gave him at night to 14oz. Yesterday he drank 2.5oz of milk at daycare and probably 6oz of water at home. Today, I swear I don't think he went 5 minutes w/o eating something at any time. it was actually hard to keep up with him.

I reorganized the open shelf where we store all of "his" food. All of his snack food is now at his eye-level, all drinks and cups within reach. I figured if it works for supermarket marketing, it might work for us. It did. At one point he actually brought me a container of prunes and wanted them. He ate them all. An hour later (eating crackers in the mean time) he brought me another container of prunes and a spoon. Mommy, feed me! I thought a second container of prunes was a bad idea and managed to convince him that applesauce was a better option. He gobbled it all down then went straight back to snacking. A few minutes later, he brought a package of organic fruit bites. He'd never had anything quite that chewy. It was funny to watch him figure it out. The first one took a minute, the rest of the package were scarfed down. I couldn't help but stare.

Even David commented yesterday that he just can't get used to it. Seeing our son eat is the best high in the world. Of course, that comes with a lot of lows when he doesn't. God knows when he rejects food, when he throws it, when he goes all day and eats nothing but Goldfish Crackers, my soul weeps. But a day like today keeps me going.

His feeding therapist came today for the first time in four weeks. (Bureaucracy. Gotta love it.) She was amazed as well. She feels like we've rounded a corner. It's really just a matter of getting his drinking going.

He needs around 950 calories a day. He's averaging around 700 by mouth. Today he probably broke 800. (It's much harder to track when he's eating non stop.) He has lost just over a pound since this last tube wean. Fortunately he has stopped losing and seems to be holding steady. He was a little lower, but those were very dehydrated days, so I think he's hit a stable point. We just need to get him to eat enough to gain. It's not uncommon for that to take a few months, which I'm trying to focus on. It is extremely difficult to see him so skinny, though. I can see every rib when he breathes; his hip bones protrude as if taunting me.

It's definitely not for the faint of heart, this tube-weaning. His therapists help. At this point I think they're giving me more therapy than him. They are glad we're pressing forward. They're impressed with how well he's doing. Their encouragement is.... well..encouraging. This is a task that is very difficult, but seeing him improve day by day is amazing. It's so worth it.


Monday, October 4, 2010

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.