Nearly a year ago, I made a new friend. Becky somehow stumbled across my blog and was shocked and relieved to read a story so similar to her own. That night, she would write me what she said was the longest email she'd ever written. I believe her -- it was pretty long. Fortunately it was also riveting enough that it kept my attention in spite of the media-overload-induced ADD I seem to have developed lately.
Becky's son, Evan, seemed to be Robbie's twin from another mother. He was a 24 weeker with a very similar gastric background as Robbie. He was also almost exclusively tube-fed and vomited almost as often as he breathed. We weren't alone.
Since then, Becky has become one of my greatest allies in the fight against reflux and in life overall. She and her husband have been there for us in many ways, but the most important one is knowing I wasn't alone. I wasn't the only mother who couldn't get her child to eat. I wasn't the only mother of a child who can't digest corn or can physically eat but chooses not to. More than once, we've chatted into the night long after our husbands gave up and went to bed alone.
Several months ago, an amazing thing happened. Evan started eating by mouth. It wasn't magic. There was no magic solution. It wasn't as simple as finding the right cup or food. They'd done all the same things we have. Every sippy cup and bottle ever made, every "yummy" food ever concocted, low pressure, high pressure, therapy, research, praying. What finally worked was patience and guided tube-weaning. It wasn't an easy process. I got lots of emails about how little Evan would eat or drink some days. They would learn that Evan couldn't take whole milk, either as a drink or in dairy products. They learned that Evan loves chocolate, but not chocolate milk, only vanilla Carnation Instant Breakfast. Those discoveries took lots of trial and error. Lots of panic and tears. But they made it.
About 6 weeks ago Becky and her husband and Evan reached the ultimate goal for any tube-fed child. They removed Evan's tube. All that remains are scars, both physical and emotional. Evan will probably always have a spare belly button by which to remember the months of life-saving nutrition his button provided. And his parents will probably always bear the emotional scars of watching her son struggle and starve. It isn't always easy. We still talk a lot about good days and bad days, about vomit. We still talk a lot about weight. But it's different now. Evan eats. God smiles.
Once it became clear that Evan was successfully weaning from the tube and was going to be able to survive eating on his own, Becky started talking about Robbie. Robbie eats more by mouth than Evan did before they started. He has fewer behavioral vomits than Evan did. She thought Robbie could do it, too.
I thought she was crazy. But slowly the suggestion started to seep into my brain. I started doing reading. I found stories of other parents who successfully tube-weaned. I read medical studies from tube-weaning clinics. I followed Evan's progress almost obsessively.
Sometimes I'd think maybe we could. Then I'd freak out again and tell myself I was crazy, just like Becky. But.. then Robbie would have a good day. Maybe he'd get hot & sweaty and drink a half ounce of water. Or he'd see a box of Cheez-Its and practically knock you over to get one. Hope seeped in. It would leave again in a flash. He'd throw a spoon at me. He'd puke on the table in a restaurant when he saw me aiming a fork his direction. But then one day he'd sign "eat" and ask for a cracker. All signs were pointing towards readiness.
I kept procrastinating anyway. Every time something would go wrong, I'd put it off again. But about a month ago I decided to set a deadline. Not for Robbie, but for me. A date we would at least TRY. I spoke to his therapists, his doctors and daycare. David and I discussed it a hundred times. Becky's inbox overflowed with questions.
Friday is that deadline. Right now, Robbie eats two jars of baby food and all the crackers he wants (approximately 3 a day) by mouth each day. On a good week, he might drink 1/2 oz of liquid. Everything else goes in his tube. He gets three 7 ounce bottles throughout the day and then 10 oz of calorie-heavy formula at night while he sleeps.
Thursday night, I will not give him the formula. Friday he will go to daycare as usual and be offered food and drink like always. But if he doesn't take it, nothing goes into the tube. That will continue through the weekend. The hope is that if he gets thirsty enough, he will finally drink. It likely won't be enough at first, but eventually, we hope that it will. I may have to supplement for hydration.If by Sunday night he's still not taking in at least 20 oz of liquid, I'll top him off with pedialyte as soon as he goes to bed.
He is going to lose weight. Everyone agrees that he is going to drop. And it's going to be hard. Some of the parents I've followed saw their children get weak enough they stopped playing before finally eating. These kids have a higher tolerance for hunger than most people. They don't trust food.
But we're going to try.
I don't know if it is going to work. Since I set the deadline, I've been very hopeful. I've pictured Robbie eating. I've thought about not having to order medical supplies every months, about not hauling medical equipment everywhere we go. About not worrying about his tube ripping out while he plays, or him strangling in the cord while he sleeps at night. What a beautiful life it will be.
Of course now, on the even of this change, I'm nervous. I'm scared, petrified, worried. I have a thousand thoughts racing through my head. What if it doesn't work? What if he won't drink? Eat? What if he doesn't get enough nutrition? What if I can't find the right cup for him to drink out of? Or the right food or drink he'll like? What if he does eat & drink but it's just never enough. What if he loses too much weight? What if.. what if...
Fortunately Becky is good at calming me down. She wrote a lovely, encouraging email earlier which made me cry. I really needed that; the cry more than the encouragement, I think.
So tomorrow, we're tested. Robbie's abilities and stubbornness will be tested; my faith and hope.
I'll want a written record of the journey, of course. Also, I tend to cope with stress by writing. I have a feeling things will be busy around here for a while. Stress is not in short supply.
Please pray for and think of us in the coming weeks. We're all going to need it. This is a brand new challenge. I hope we're up to it.