Thursday, April 29, 2010

A new challenge

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.



Rachel said...

We'll be thinking of you and how brave both you and Robbie are to try and wean him off his tubes. I do hope it works, but I also think you should be so proud either way that you were willing to take this risk and suffer through (hopefully not too many) anxious days as your test his limits.

The Quarke Family said...

Wishing the three of you the very best of luck. I can't add anything useful here, but just wanted to say I'll be thinking of you.

Mrs. V said...

You'll definitely be in my prayers Trish! I started to cry when I read this post. I'm not yet a mother, but I felt your emotions, and I can only imagine what you are going through. I'm also proud of you for taking this step. Sending you virtual hugs, and lots of prayers!!!!

mrs.spit said...

I was just thinking about you last night, and how you hadn't posted in forever, and I thought I'd email you, but google ate your email.

This is great news Trish. Absolutely great.

Ivory said...

I have the utmost faith in you and Robby. You CAN do this!!

Suzy said...

Great news! Praying for all of you.

Mommy Shoes said...

It will be so hard, praying for all of you.

Alex said...

Please update how its going. My son is a very picky eater but he eats lots of what he likes. Yogurt, crackers, bread, applesauce. But its frustrating because sometimes even his *staples* don't appeal to him which limits what he eats. Which while he eats enough its frustrating for us. I have tried only offering him what we and the girls eat but he pushes it away, holds it like its squirming and cries. I have tried not offering him a *staple* substitute and he goes for a nap without eating and then offering the food he rejected to him again after in hopes that he would eat and he doesn't. Finally I have given in and offered milk which I KNOW fills him up enough that he isn't desperate and I know it is probably worse because he won't feel the hunger but I feel so I can't watch my baby *starved and weak* They say a baby won't starve themselves but this boy makes me doubt that when he refuses to eat. So I give in. And I feel like crap for giving in but I feel better than watching him tired from hunger. And thats only the one day. So with Robbie that is not even in the same catagory because at least Josh eats and its just what he eats not how much, I know that if you can get the strength to do it, and Robbie starts to eat...then there is hope that Joshy won't be heading off to college eating only yogurt and toast with peanut butter for protein.

Not to put any pressure on you or Robbie but I am inspired to be strong all over again. So if Robbie can do this...then watch out Joshy!! Never thought I'd be begging a child to eat mac and cheese and hot dogs...but if Josh ate those I know I would actually cry with delight.

Good luck, I hope you and Robbie do great. after all you've been through you deserve a breakthrough!!

Deep Thinker said...

I wish you all good luck!

Laura said...

All our love to you guys! He's ready for this. You are too. It will work. I know it will be very difficult, but I'm excited for you and Robbie. Please let me know if there is anything at all I can do to help. You know, if what we're doing now at our feeding clinic doesn't work I will be following in your foot steps. ((HUGS))

Adriane said...

Big hugs to you!!! I will be thinking about you all.

Tasha said...

Will Becky be my friend too???? Bree eats three ritz crackers a day (one at each feeding) and 1 ounce of whole milk on a good day. I am going to the pediatrician tomorrow to talk about appetite stimulant since she doesn't really feel hunger but I'm starting down the same road as you. I feel that it is time to try it, but I am scared as hell to do it. KWIM?

Azaera said...

You can do it. Sending you hugs and positive thoughts.

Heather said...

I'll pray for you. Good luck!

Anonymous said...

Good luck!!!!

Patti B.

S said...

Oh Trish. I know it is stressful. My babies never had tubes, so I can't directly relate. However, as a Mommy, I can feel your stress and anxiety in the post.

Prayers for you and Robbie.

El said...

Good Luck, Trish. I can't wait to see what happens! I know it'll be hard but so, so worth it in the end!