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.
--Trish
Thursday, April 29, 2010
Friday, April 23, 2010
March for Babies
Just a reminder that today is the last day to contribute to Team Remarkable Robbie. Our March for Babies is Saturday morning. We have a team of 8 and are looking incredibly forward to our first march. As of this writing our team has just over $1700 dollars in donations. We couldn't be more grateful to those who have donated to the organization that helped this tiny fragile preemie
turn into this giddy, robust boy
Every dollar counts!
--Trish
turn into this giddy, robust boy
Every dollar counts!
--Trish
Friday, April 16, 2010
Robbie is famous!
Robbie's so cool, he makes the papers.
A shout out to the writer and my friend, Nicole. And to my friend Leanne who took the fabulous photo accompanying the store.
Read the story here
Only eight days 'til race day!
--Trish
A shout out to the writer and my friend, Nicole. And to my friend Leanne who took the fabulous photo accompanying the store.
Read the story here
Only eight days 'til race day!
--Trish
Wednesday, April 14, 2010
coasting
When I'm going about my day and thinking about things, I find myself often thinking "oh, I should write a blog post about that."
Why, then, is it that when I sit down to write, I haven't the faintest idea what I wanted to write about? Several nights in a row now, I've sat her looking at the blinking cursor feeling like a character in a movie about a writer with writer's block. (I still can't decide who would play me. Preferably someone not skinny. That doesn't leave a lot of options.)
Really, there is nothing profound happening lately. Robbie's doing quite well, really. He's finally picked up a few more words, and his receptive language is growing my leaps and bounds. Really, he communicates very well for a kid with less than 10 words. If he wants me to do something, he just grabs my hand and puts it on whatever he wants. Pressing a book in my hand to be read to (God, I *LOVE* that. Love, love love.), pressing his sunglasses or socks (or just one sock :sigh:) or shoes wanting me to put them on him. If a toy won't work quite right, he shoves that at me, too. It's particularly adorable when we're playing and he grabs my finger and pokes it into his belly or neck to be tickled more. The kid REALLY likes to be tickled.
His gross motor skills are continuing to improve. He can climb up a few stairs now and has even attempted going down them while holding our hands. (He goes down them the right way, too, not crawling down.) He still isn't really standing up in the middle of the room much. I've seen him do it twice, but most of the time he tries.. tries.. grunts..tries.. then gives up and crawls to the nearest piece of furniture which he can touch with one finger and magically stand up just fine.
He HATES grass. If ever I want to take a picture of him standing still, I can just put him in the grass because he refuses to walk in it. Daycare has been working on him and so have we, but every day, it's the same thing. Stand him in the grass. Then drag him around forcing him to take a few steps or fall down. He grudgingly takes a few steps, but at the first opportunity he heads straight for the sidewalk, taking huge wide steps as though he were walking through quicksand. I used to tell David that he and Robbie could go camping together, I'd be at home in the air conditioning. At this rate, looks like Robbie might be home with me.
He's still growing well. His last GI check-up he was 23 pounds 10 ounces and a little over 31 inches tall. Still a peanut on the growth chart, but inching slowly up it anyway. He's now tall enough to hit the lever on the water dispenser in the fridge door. Thank heavens for whoever thought to include a lock-out feature.
Healthwise, he's been good. He still gets every cold that goes around plus some and he still wheezes every single time, but we've been able to manage his symptoms at home (with nebulizer treatments). He's only had one ear infection since the tubes went in and it cleared up quickly with just five days of ear drops. He's been having allergy issues, which suck. He blocked his tear ducts and had an eye infection a few weeks ago. But again, some drops and he was good as new.
Eating is about the same. He eats better at daycare than at home, but still maxes out at about 8oz of purees each day. Still drinks pretty much nothing. He'll let me give him medicine from a dropper, and follow it up with some water, but it's like that's part of his evening routine. He doesn't want to drink for a dropper any other time. Last week he got really hot outside at daycare and came in and willingly drank maybe an ounce of water from a sippy cup (with lots of encouragement to watch the other kids) but it's not really been repeated. I keep a sippy cup filled and handy to him and he'll play with it, but not drink from it. If I give him something without a stopper, it's great fun to pour the water out and then splash in it, but let's not get crazy and put any in our mouths, okay?
I've been trying to add some duocal to his food this week for extra calories, trying to bulk him up just a little bit, but it seems to be aggravating his reflux. He hasn't puked any more than usual, but I can see the reflux bothering him a lot more than usual. Where he normally would just puke mid-play and never bat an eye, now he'll groan a bit and lay his head on my shoulder and vomit all over both of us. Or he'll burp loudly and painfully, swallowing hard, clearly uncomfortable. Since he hasn't puked more, I am hoping to give him a full week of the duocal to see if symptoms improve, hoping his guts will get used to the corn (FREAKING CORN) in it, but I'm guessing that we'll give it up next week. Hoping to find a calorie additive that isn't corn based.
Mostly we've just been living our lives. I don't feel like I get to spend enough time with him since I don't get home from work until after 6 and he goes to bed at 9, so I try to sneak out early at least once a week so I get to pick him up from daycare. I love being the one to get him. He's always so happy to see us. Instead, I get the drop off where he's whining and clinging to my leg. The last few days he's been declaring "all done" and going to the door like "let's get out of here, Mom." He really does like daycare and has fun while I'm gone, but I know he hates seeing me leave. It breaks my heart a little every morning.
He is really in a mommy phase right now. It is sometimes exhausting because I literally can't do anything in the house without him wanting to be picked up and held every few minutes, but I wouldn't trade it. He went through a few months of really being about his dad, even shoving me away if I tried to sit with him and David. So I'm enjoying being loved again.
Really, life is good right now. Never perfect, but good. I couldn't love my kid any more. He's happy and healthy. As far as I know my husband doesn't have a stash of women on the side, which seems to be the thing to do these days, so I think we're in good shape.
The next few months will hopefully bring some good drama to our lives, but I'll discuss those events at another time. (No. I'm not pregnant.) For now, I'm just enjoying coasting.
--Trish
P.S. To those bloggers who I normally keep up with, I'm sorry. We've been slow at work for months, so I had plenty of time to keep up with everyone, but we've actually started a new project and I'm swamped (which is a good thing!) but I'm SO far behind on blogs. I'm scared to even see how many I have unread right now. I will catch up. I swear!
P.P.S. Okay, I checked. 624 unread blog posts. God help me.
Why, then, is it that when I sit down to write, I haven't the faintest idea what I wanted to write about? Several nights in a row now, I've sat her looking at the blinking cursor feeling like a character in a movie about a writer with writer's block. (I still can't decide who would play me. Preferably someone not skinny. That doesn't leave a lot of options.)
Really, there is nothing profound happening lately. Robbie's doing quite well, really. He's finally picked up a few more words, and his receptive language is growing my leaps and bounds. Really, he communicates very well for a kid with less than 10 words. If he wants me to do something, he just grabs my hand and puts it on whatever he wants. Pressing a book in my hand to be read to (God, I *LOVE* that. Love, love love.), pressing his sunglasses or socks (or just one sock :sigh:) or shoes wanting me to put them on him. If a toy won't work quite right, he shoves that at me, too. It's particularly adorable when we're playing and he grabs my finger and pokes it into his belly or neck to be tickled more. The kid REALLY likes to be tickled.
His gross motor skills are continuing to improve. He can climb up a few stairs now and has even attempted going down them while holding our hands. (He goes down them the right way, too, not crawling down.) He still isn't really standing up in the middle of the room much. I've seen him do it twice, but most of the time he tries.. tries.. grunts..tries.. then gives up and crawls to the nearest piece of furniture which he can touch with one finger and magically stand up just fine.
He HATES grass. If ever I want to take a picture of him standing still, I can just put him in the grass because he refuses to walk in it. Daycare has been working on him and so have we, but every day, it's the same thing. Stand him in the grass. Then drag him around forcing him to take a few steps or fall down. He grudgingly takes a few steps, but at the first opportunity he heads straight for the sidewalk, taking huge wide steps as though he were walking through quicksand. I used to tell David that he and Robbie could go camping together, I'd be at home in the air conditioning. At this rate, looks like Robbie might be home with me.
He's still growing well. His last GI check-up he was 23 pounds 10 ounces and a little over 31 inches tall. Still a peanut on the growth chart, but inching slowly up it anyway. He's now tall enough to hit the lever on the water dispenser in the fridge door. Thank heavens for whoever thought to include a lock-out feature.
Healthwise, he's been good. He still gets every cold that goes around plus some and he still wheezes every single time, but we've been able to manage his symptoms at home (with nebulizer treatments). He's only had one ear infection since the tubes went in and it cleared up quickly with just five days of ear drops. He's been having allergy issues, which suck. He blocked his tear ducts and had an eye infection a few weeks ago. But again, some drops and he was good as new.
Eating is about the same. He eats better at daycare than at home, but still maxes out at about 8oz of purees each day. Still drinks pretty much nothing. He'll let me give him medicine from a dropper, and follow it up with some water, but it's like that's part of his evening routine. He doesn't want to drink for a dropper any other time. Last week he got really hot outside at daycare and came in and willingly drank maybe an ounce of water from a sippy cup (with lots of encouragement to watch the other kids) but it's not really been repeated. I keep a sippy cup filled and handy to him and he'll play with it, but not drink from it. If I give him something without a stopper, it's great fun to pour the water out and then splash in it, but let's not get crazy and put any in our mouths, okay?
I've been trying to add some duocal to his food this week for extra calories, trying to bulk him up just a little bit, but it seems to be aggravating his reflux. He hasn't puked any more than usual, but I can see the reflux bothering him a lot more than usual. Where he normally would just puke mid-play and never bat an eye, now he'll groan a bit and lay his head on my shoulder and vomit all over both of us. Or he'll burp loudly and painfully, swallowing hard, clearly uncomfortable. Since he hasn't puked more, I am hoping to give him a full week of the duocal to see if symptoms improve, hoping his guts will get used to the corn (FREAKING CORN) in it, but I'm guessing that we'll give it up next week. Hoping to find a calorie additive that isn't corn based.
Mostly we've just been living our lives. I don't feel like I get to spend enough time with him since I don't get home from work until after 6 and he goes to bed at 9, so I try to sneak out early at least once a week so I get to pick him up from daycare. I love being the one to get him. He's always so happy to see us. Instead, I get the drop off where he's whining and clinging to my leg. The last few days he's been declaring "all done" and going to the door like "let's get out of here, Mom." He really does like daycare and has fun while I'm gone, but I know he hates seeing me leave. It breaks my heart a little every morning.
He is really in a mommy phase right now. It is sometimes exhausting because I literally can't do anything in the house without him wanting to be picked up and held every few minutes, but I wouldn't trade it. He went through a few months of really being about his dad, even shoving me away if I tried to sit with him and David. So I'm enjoying being loved again.
Really, life is good right now. Never perfect, but good. I couldn't love my kid any more. He's happy and healthy. As far as I know my husband doesn't have a stash of women on the side, which seems to be the thing to do these days, so I think we're in good shape.
The next few months will hopefully bring some good drama to our lives, but I'll discuss those events at another time. (No. I'm not pregnant.) For now, I'm just enjoying coasting.
--Trish
P.S. To those bloggers who I normally keep up with, I'm sorry. We've been slow at work for months, so I had plenty of time to keep up with everyone, but we've actually started a new project and I'm swamped (which is a good thing!) but I'm SO far behind on blogs. I'm scared to even see how many I have unread right now. I will catch up. I swear!
P.P.S. Okay, I checked. 624 unread blog posts. God help me.
Tuesday, April 6, 2010
Easter
We had a lovely Easter.
I was honestly kind of dreading it because we were headed to my MIL's for the weekend. I discussed with David ahead of time that I wasn't even going to pack any sippy cups. I just could not take another weekend of water torturing my child. It stressed me out, but more importantly, every time it happens, Robbie would backslide. He was traumatized and I was pissed. I refused to do it again.
A friend who has been through this told me that when they went on vacation, they let their son have a vacation as well. No eating/drinking pressure. I decided that was brilliant and David agreed.
But I worried all week about how she was going to react when we got there. I steeled myself for a lecture. It never came. Not once.
We arrived Friday afternoon and had a lovely evening. Robbie was adamant he was NOT going to sleep and managed to work himself into hysterics enough to puke EVERYWHERE a couple of times. Then he decided to change tactics and try jumping and shaking and laughing. For 2 1/2 hours I shushed, I patted, I rocked, I laid with, I sang and ultimately he had to cry it out. It was a long night. But that was the worst of the trip.
Saturday, again not a word. We had more rough sleeping from Robbie, but otherwise, a lovely day.
Sunday afternoon Robbie was eating some crackers and she asked if she could give him some water. I said no because I was getting ready to tube a bottle and I didn't want to fill him up too much and make him puke. She took that without any argument or pouting or disapproving scowling. It was an Easter miracle.
We also got to take Robbie to church on Sunday. It was his first time attending. His first year, he was quarantined, then last summer he just kept getting sick so we kept putting it off. Then we were back into RSV season again. But this year, we decided we were going for Easter. We were able to go to our home church in David's home town and it was great to be there.
Robbie unfortunately woke up in a horrible mood. I'm sure it was the lack of sleep, but he was very short-tempered and impatient. I hoped he'd perk up in time for the service, but no luck. At one point our pastor introduced Robbie to the congregation (Yeah, didn't know he was going to do that.) and when I picked Robbie up so people could see him, he had a tantrum. Yes, with the ENTIRE church watching. Our pastor remarked, "if he wants to sing, let him sing!" which made everyone chuckle and made me feel a little better. We ended up spending the entire sermon in the nursery where Robbie was suddenly happy and playful again. Funny how that works.
But, even if I missed the main course, we got a little bit of the sermon appetizer and it was nice to see everyone. We headed home afterward and had a nice lunch on a beautiful day. What more could we ask for?
Well, pictures, of course!
--Trish
Last Tuesday, my friend Leanne was kind enough to take a few shots of Robbie in his Easter outfit. I really just needed a good shot for the shirts I'm going to print for our March of Dimes walk but she took a bunch and I'm so happy with them!
Thanks again, Leanne!
And of course, Easter day itself:
Look, the Easter Bunny has been here!
How fun!
I am a flower.
Oohh.. what do we have here?
After church
I was honestly kind of dreading it because we were headed to my MIL's for the weekend. I discussed with David ahead of time that I wasn't even going to pack any sippy cups. I just could not take another weekend of water torturing my child. It stressed me out, but more importantly, every time it happens, Robbie would backslide. He was traumatized and I was pissed. I refused to do it again.
A friend who has been through this told me that when they went on vacation, they let their son have a vacation as well. No eating/drinking pressure. I decided that was brilliant and David agreed.
But I worried all week about how she was going to react when we got there. I steeled myself for a lecture. It never came. Not once.
We arrived Friday afternoon and had a lovely evening. Robbie was adamant he was NOT going to sleep and managed to work himself into hysterics enough to puke EVERYWHERE a couple of times. Then he decided to change tactics and try jumping and shaking and laughing. For 2 1/2 hours I shushed, I patted, I rocked, I laid with, I sang and ultimately he had to cry it out. It was a long night. But that was the worst of the trip.
Saturday, again not a word. We had more rough sleeping from Robbie, but otherwise, a lovely day.
Sunday afternoon Robbie was eating some crackers and she asked if she could give him some water. I said no because I was getting ready to tube a bottle and I didn't want to fill him up too much and make him puke. She took that without any argument or pouting or disapproving scowling. It was an Easter miracle.
We also got to take Robbie to church on Sunday. It was his first time attending. His first year, he was quarantined, then last summer he just kept getting sick so we kept putting it off. Then we were back into RSV season again. But this year, we decided we were going for Easter. We were able to go to our home church in David's home town and it was great to be there.
Robbie unfortunately woke up in a horrible mood. I'm sure it was the lack of sleep, but he was very short-tempered and impatient. I hoped he'd perk up in time for the service, but no luck. At one point our pastor introduced Robbie to the congregation (Yeah, didn't know he was going to do that.) and when I picked Robbie up so people could see him, he had a tantrum. Yes, with the ENTIRE church watching. Our pastor remarked, "if he wants to sing, let him sing!" which made everyone chuckle and made me feel a little better. We ended up spending the entire sermon in the nursery where Robbie was suddenly happy and playful again. Funny how that works.
But, even if I missed the main course, we got a little bit of the sermon appetizer and it was nice to see everyone. We headed home afterward and had a nice lunch on a beautiful day. What more could we ask for?
Well, pictures, of course!
--Trish
Last Tuesday, my friend Leanne was kind enough to take a few shots of Robbie in his Easter outfit. I really just needed a good shot for the shirts I'm going to print for our March of Dimes walk but she took a bunch and I'm so happy with them!
Thanks again, Leanne!
And of course, Easter day itself:
Look, the Easter Bunny has been here!
How fun!
I am a flower.
Oohh.. what do we have here?
After church
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