Thursday, May 20, 2010


Prematurity claimed another victim today.

Justice was a 27 weeker with chronic lung disease who fought through a terrifying case of RSV this past winter. He recently contracted a lung infection and the combination of those things overwhelmed him today. He was a fighter through and through, and battled long and hard. But he was 20 months old and had endured more than many people do in a lifetime.

Tonight he breathes freely and rests peacefully amongst the angels. Please give the family your thoughts, prayers and condolences. 

And hug your children a little closer tonight. I know I am.


Thursday, May 13, 2010


I have just relived every great idea I've had for the last 15 years.

When I was 20, I decided I wanted to be crafty and bought hundreds of dollars worth stamps, pads, stickers, embossing supplies, paper sets etc etc etc ad naseum then promptly made 2 cards, one picture frame and a Christmas ornament before I decided I didn't have the time or the money to continue. I stuck it all in cheap plastic containers and stored it away for a better time.

Then when I was 23, a close friend and I decided we were going to open a gift shop and were making gift baskets and selling them. I bought hundreds of baskets, miniature stuffed animals, and gift bows, sold a few dozen, made a nice profit for about 3 months and then started fighting with said friend and we chucked the idea. The remaining items were bagged up and stuffed into a closet.

Then when I was 26 and lucky bamboo was all the rage and I found a wholesaler, bought hundreds of vases and gravel and plants... turned a nice profit, but then saturated my market (seriously, there are now 5' tall bamboo plants on every 4th desk at work) and gave it all up. I eventually killed the remaining plants (PSA: a brown thumb should not sell plants), wrapped the vases in newspaper, packed them into boxes and shoved them onto a shelf.

When I bought my house, ALL of these great ideas then got packed up and stuck on a storage shelf and proceeded to collect dust for the next 5 years.

And now? All of it is in my garage, piled only moderately neatly on tables with a brightly covered tags on it waiting for some other hoarder to come along and pay 25 or 50 cents for it and GET IT THE HELL OUT OF MY HOUSE.

We need it all gone to make room for the BRILLIANT idea I had when I was 29. That idea took nearly three years to come to fruition, but I must say, when you finally have the right idea, it could never be confined to a shelf. 


Sunday, May 9, 2010

Mother's Day

I have a confession to make.

It's a dark, shameful confession. I hope you're sitting down.

I like Hallmark Holidays.

Go ahead, roll your eyes, I know. There is absolutely no logical reason why a couple should be nicer to each other on February 14 than on February 13. I know that. I don't care. I like the reminder to do something nice, the excuse to get dressed up and eat a fancy meal with someone I love. Sure, we could (and sometimes do!) do that anyway. I'm lucky to be married to a guy who also likes such holidays (honestly, more than even I do) and never lets me down. And I like it.

However, there is one exception - Mother's Day. Mother's Day is an enigma to me. Three years ago, I wrote about my discomfort with being both a motherless child and a childless mother. Obviously, part of that is now... let's say "resolved." When the lady at the grocery store asks me if I have children, I no longer hedge or stutter. Oh, ooh, pick me! Pick me! I know the answer! When they ask how many kids I have, I quickly reply, "one." I still blanch a little, knowing the full answer is "two in heaven, one in my arms" but I feel okay with my answer because I do currently HAVE one child. I'll see the other two again in heaven, but I don't have them now.

I'm still a mostly motherless child. As far as I know, the woman who bore me still resides one state to the right, but I haven't heard from her in more than 5 years. I'm still mostly okay with that. There are times that I'm not. Growing up, it was usually my birthday. I wondered if she even remembered. After Robbie was born, it was more acute than I can ever remember it being. I was weak and vulnerable and yearned for a maternal touch to stroke my hair and tell me it was going to be okay. And of course, there was always Mother's Day. When friends celebrated their own mothers, I sat quietly. It wasn't so much a gaping wound, but certainly a scar that still ached in just the right weather.

Before Robbie was born, I thought about what Mother's Day would mean to me if I ever got to see it from "the other side." I would be healed, of course. There would be burnt waffles & scribbled drawings & slobbery kisses and I would be complete. I didn't think that becoming a mother would fix everything in my life, but that was one area I thought would be at least vastly improved.

Becoming Robbie's mom did fix a lot. It did fill a hole in life that I didn't really understand the depths of. I had finally won at least a battle against infertility, if not the war. I was now at least less of a failure (prematurity notwithstanding.) As Robbie got through rough patch after rough patch, medical scare after medical scare, I figured out that I'm actually a pretty decent mother. Not perfect by any stretch of the imagination, but I really love my kid and I'm willing to put his needs before mine. That was something I couldn't say about my own mother and sometimes, if I was honest, I worried that maybe my lack of a mother would leave me unable to be one myself. I don't worry about that any more. If... no, I mean when I experience a failure as a mother, it will be because I'm a human and no mother is perfect, not because I'm a bad one or because my son deserves someone better.

In spite of all of that, though, I actually find myself even more ambiguous about Mother's Day as a holiday. I still sit quietly while other people talk about what they're doing for their mothers on this day. That scar still aches. I still think about the babies that I lost. This is my 2nd official Mother's Day, but I know it might have been my 4th. While our continued infertility isn't front and center in our lives right now, it still exists. And more than that, I still frequently think of, and mourn with, my infertile & childless-mother friends. I hurt for them knowing how painful this day can be.

Yes, we have plans. A family breakfast, a fancy dinner. Robbie's OT helped Robbie make a hand print art project for me. There will be a card or two, I'm sure. I will enjoy all of those things. But I don't need them. Not even a little bit.

David has been talking about the day for a couple of weeks now. I keep telling him that every day is Mother's Day to me. Every day that includes Robbie reaching up for a hug or crawling over to lay his head on mine is the most perfect day. As much as I will enjoy the royal treatment, every day feels special with Robbie as part of it. Those who find this day painful need a fancy meal so much more than I do.

It will be a happy day in our house. I'm looking forward to it. Though my scars will ache a little, and I will remember. I will remember my motherless years. I will remember my lost babies. I will remember those for whom today isn't just a scar, but a gaping, festering wound.

But not just in spite of those memories, but in honor of all of them, I will enjoy the day. I mean, there will be fondue, after all. I won't let a deficient childhood or infertility or loss steal tomorrow. In fact, I will endeavor to enjoy it even more because of those things. Enjoying the day will be metaphorical middle finger to that which steals the joy from good people.

I will grin through six consecutive readings of "Tumble Bumble" and play peek-a-boo even though he sometimes forgets to let me find him. I will pull him into my lap for a snuggle break after he tires of being chased through the house. I will make a fool of myself to make him giggle until he loses his breath, gets the hiccups and throws up on me.

Tomorrow, every smile will have extra meaning. Not Hallmark fake meaning, but true, honest, lasting meaning. It will be a true holiday- Mother's Day.


Thursday, May 6, 2010

Tube Weaning: Day 7 & baby marching

No change.
Didn't drink. Ate about 10 oz of purees, some crackers. Self fed a few licks of chocolate pudding. Played with a popsicle but wouldn't lick it.

Tomorrow we're going to try spoon feeding some liquids. I haven't quite decided between water or some juice. I got some lemonade, which he's never had before. Maybe he'd like something tart? I don't know.

I wish EI would hurry up and get our feeding therapist lined up. We need help. Clearly.

However, I'm tired of not having good news. Let's focus on something better.Those of you who follow Robbie's blog have already seen, so pardon the repeat. But for those who don't, thank you *SO* much to everyone who donated!


April 24, 2010 was the day we'd been anticipating for months. Our first March For Babies. Team Remarkable Robbie raised nearly $2,800 total. More than half of that came from a couple of our last minute walkers, Sherry & J. Their son, Gus, was born full term but with a birth defect known as esophageal atresia. He spent 107 days in the same NICU in which Robbie spent 96 days. But the rest of the team did very well, too.

Considering my original goal was $500, I don't think we did half bad. I was moved to tears several times when I saw the continued generosity of our friends, family members, coworkers and even perfect strangers. Thank you so much to all who gave!

The day started early. We hoped to be at the walk site in Forest Park by 8am. The walk was slated to begin at 9. That meant our day began around 6. As Robbie doesn't normally rise until after 8, he was a little discombobulated, but mostly in a good mood.

We arrived at the site. The first indication we were in the right place was all the balloons.

It was still early. There were plenty of people there, setting up booths and preparing to meet the walkers.

My company, AT&T, had a booth. Sadly, there was no one working it, so it was just a sign and an empty table. Wish I knew someone in marketing to complain to.

The March of Dimes did a photo-op of all the preemies in attendance. They were all given blue "I was a preemie.." shirts for the photo op.

Sherry made Robbie a stroller sign showing just how far he's come. "From Small Beginnings..." indeed.

Grandpa is here!

David's not so thrilled about the early hour, either.

The back of our T-shirts.

Grandpa insisted on getting the Ram's cheerleaders autographs. "For Robbie," of course.

Sherry and Gus arrive

And J & Charlie, too.

Robbie's still trying to figure out what is going on.

Some more mom friends and their kids join us as well.



Jenn & Becca

Uh-Oh. It's almost race time and Robbie is out cold!

But we're off anyway

Our team is off to a good start.

Gus is a lot livelier than Robbie.

J and Charlie can't be held back any more. They jog ahead.

Oh hey, Robbie's awake again. Maybe this is fun after all.

Nearing the end. Gus needs a stroller break.

Finally the end! Megan walked the whole 3 miles in spite of being 36 weeks pregnant. She's spent!

Grandpa and Robbie hit the snack tents before we head out for the day.

It turned out to be a good day for a walk. It stormed all night and again later in the day, but minus the occasional very light drizzle, we all stayed dry. The news reported 10,000 walkers marched for babies that day. St. Louis is the 9th largest walk in the U.S.

We were very proud to be part of it and are looking forward to doing it again next year. Hope to see some of you there, as well!


Tube weaning: Day 6

2 tolerated sips from me tonight. He was very distracted. As soon as he realized what was going on, he pushed back again.

He did eat solids very well today. He had 12.5 oz of purees at daycare, including one meal of 6 oz at once. The daycare said that she fed him half as he usually would eat, she turned to put something in the sink and he was self feeding himself, so they finished the jar.

We went out to dinner tonight (I decided to break my diet and have a margarita. Or two.) and he ate probably 6 cheezits, a chunk of chocolate graham cracker & several small pieces of bread. I gave him some fruit as well, but he didn't even touch that.

He had 400 calories in purees, plus whatever all the crackers and bread added up to. I didn't even include those in the tally. I tried to wait for him to sleep to start his drip tonight, but yet again, he laid awake until I turned it on. He's normally asleep very quickly. But every night since we started this, he's laid awake a long time. I can't help but feeling like he's waiting to make sure I'm going to come in and make his tummy feel better.

Emotionally, I'm okay. The margaritas helped. I honestly couldn't tell you the last time I had more than one drink. Hell, I can barely tell you when the last time I had *A* drink was. But I was really wallowing. And damn, they were some good margaritas.

In a sad but funny moment, Robbie kept reaching for the margarita shaker on the table. I finally told him "that's a drink." He turned his head to the side, said no and never reached for it again. I don't know if I should laugh or cry.

We're just trying to muddle through. I have a few ideas for different things to try, but I can't say I feel that hopeful about any of them. I just know I can't give up.


Wednesday, May 5, 2010

Tube Weaning: Day 5

Total regression.

He didn't drink a single drop today. Not 1 ml. He ate 10.5 oz of baby food, several crackers, a couple of puffs and licked the juice of some ravioli off a spoon. Less than 300 calories.

I ended up tubing him 20oz of formula at bedtime. (It's still going.)

I don't know what to say. Daycare said he just wasn't interested. Every time they offered, he'd push the cup away. They tried some peer pressure by having him watch the other kids drinking. He didn't care. He wanted nothing to do with the cup.

Home was no different. I tried giving him some tastes of different juices by dipping my finger and rubbing his lips. He let me do that until he realized what I was doing, then freaked out again.

I made a sippy of grape juice, a baby bottle of water and an infatrainer of water and put them on the end table. He carried the sippy cup around for a while. He shook it and sprayed grape juice everywhere. I just let him go. (And washed the floors later.) He grabbed the baby bottle and came to my lap and snuggled. You'd have thought he came to have the bottle, but he just wanted to play with it. I took it and pretended to drink from it and he'd snatch it away, but never did he put the nipple in his mouth.

I don't know what to think or how to feel. If you pick a negative emotion from the dictionary, it's a good bet I'm feeling it. I'm sad, frustrated, angry and worried. I'm confused. I'm lost.

I can see him making gains with solids. He's more willing to try new flavors. Tonight he was excited to have a new set of metal silverware and spent a lot of time chopping at his ravioli, scooping it, stabbing it. Then putting the utensil in his mouth. He never got a bite of ravioli itself, but he certainly got a taste of the sauce and just kept going.

He loves cheez-its. Tonight David and I were just talking about crackers, Robbie heard the word and ran to the cabinet where they are kept and pointed and whined until I got up to get him one. You'd think all those crackers would make him thirsty.

At one point he found a snack bag of puffs and brought it to me, wanting it opened. As soon as I complied, he dug his hand in, grabbed one and popped it in his mouth immediately. He seemed surprised it wasn't as yummy as a cheez-it, but ate it anyway. Came back for more later.

But he is totally liquid averse. And I have no idea what to do about it.

For now, I've decided we will not actively encourage drinking for a bit. A cup or bottle will be available at ALL times. Just within his sight. But no asking if he wants a drink. No attempting to give him a sip. We will get nowhere while he is still squealing in protest every time he sees you holding a drink.

I do think that I'm going to continue to ONLY tube him at night. It's not ideal, but even if I have to give him all 20oz of hydration at night, and can use that to get enough calories to sustain him in, MAYBE he'd still be hungry & thirsty enough during the day to be motivated? I don't know. There is a theory that any kid on a continuous feed even at night won't feel normal hunger & thirst signals.

But where do I draw the line? Yes, when I let him go 2 days with nothing in him, he drank a few ounces. But not enough to live on. But when I added just enough to keep his body functioning, he decided that was enough not to have to do anything.

I'm willing to be patient, but I honestly don't know if I'm doing the right things to set him on the path to success.

I knew this was going to be difficult. I knew it was going to be harder on me than him. I knew it wasn't going to happen overnight. I did not anticipate the depths of despair I would experience. If it helps him, it's 100% worth it. I just wish I had a crystal ball to tell me that.


Tuesday, May 4, 2010

Tube Weaning: Day 4

This will be short because it's been a long, trying day. It definitely went the other day.

He only drank 4 oz of milk at daycare. Ate just over 8 oz of baby food. He drank another oz for David when he got home, but would not touch another bit after that.

At dinner he ate maybe 3 crackers and a tiny sliver of a piece of cheese.

I tried. I handed him the sippy and let him have his way. He chewed on the spout for a bit while we watched Handy Manny. Nothing.

I weighed him at bedtime and he was down to 22lb 8 oz. Considering he was up to 23lb 15 oz a week ago, that made me feel like vomiting. I know a good chunk of that is dehydration, but holy crap.

After I put him to bed I was really upset. Just nervous, worried, concerned. I was fighting tears. Just about the time I had decided I maybe needed to go have a private temper tantrum in the bedroom, Becky called to check in.

Honestly, God sent her to me to keep my sane, I think. She went through some of the notes on her tube weaning, pointed out a few good things, talked through some decisions with me about what to tube tonight to get him going again. Then we gabbed a long while and I'm feeling better now.

This isn't going to be fixed in a week. When my MIL suggested such a thing was possible, I considered homicide. So maybe I need to chill the fuck out and realize it's not going to happen overnight.

Back in the NICU they used to tell us it was a roller-coaster. I keep telling people it was more like bungee jumping. Even roller coasters aren't as drastic and sudden as the NICU ride. Well, that seems to apply to tube-weaning, too. He drinks 5oz one morning and I'm sailing on wind, invincible. But we have a day like today and I can see the ground screeching towards my face at break-neck speeds and I'm just praying the cord catches.

Right now, I just have to get through each day as it comes.

Please keep praying for us. Good eating & drinking thoughts for Robbie and please- patient, faithful thoughts for me.


Monday, May 3, 2010

Tube Weaning: Day 3

On paper, today was about the same as yesterday. In reality, it was even better.

Robbie slept well again, waking about 8am. David had agreed to get up with Robbie and let me sleep in. (He's gotten much better about this recently. YAY husband!) I told him to warm 8 oz of milk and offer it to him. I got up about 9:30 and asked how it had gone. He said pretty well. I got the cup and measured what was gone- about 3 oz. I asked how long it took to get that down and he said 10 minutes. That was very exciting.

I then fed him some breakfast which went so-so. I got maybe 2/3 of a jar into him before he was just not having it anymore. But he was also taking sips of milk at the same time, which was nice to see.
Throughout the morning, he willingly took sips, a ounce or two at a time. Lunchtime he took 2 more ounces of milk and 2.5 ounces of baby food again. He was self-feeding a little, mainly being really messy, but putting the spoon from bowl to mouth.

The rest of the day was about the same until we got to dinner. He was in his high chair eating crackers as usual, only faster than normal. Usually he eats maybe 2 or 3 Cheez-Its but he ate at least 5. At one point I offered him a green bean, expecting the normal behavior where he'd pick it up and pitch it in the floor. He picked it up and stuck it in his mouth. I almost fell over. He then dug it back out of his mouth and looked at it, so I thought now it would end up in the floor. Nope. He put it back into his mouth and ate it! Wonders never cease!

All totalled, he drank 11.8 oz of milk and 7.75 oz of baby food. Add in 6 or 7 crackers and 1 green bean and he got approximately 400 calories today. That's actually up a little in milk but down in calories just because of the particular foods he ate today.

But it just FELT better. There were no tantrums or fits because he didn't want to drink. Normally just the word "drink" was enough to make him angry or make him cry. Today he just said no when he didn't want one and when he did, he'd lift his chin and wait for me to give him a drink.

When he was eating crackers, he even reached for his cup to take a few sips on his own. The only drink related discord we had today was then, when I had the audacity to turn the cup around the right way.

At bedtime, he seemed to be testing my commitment to respecting his decisions. He'd accept the cup, then push it away. Then want it back then push it away. Each time I'd take the cup away just as pleasantly as I offered a sip. He seemed to be watching me intently. I really felt like it was more about learning a new component of our relationship than really about the milk.

I did opt to tube him after he went to sleep tonight. Unfortunately he laid awake forever at bedtime. He's normally asleep in less than 5 minutes, but tonight he laid quietly playing for close to 2 hours. So I wasn't able to start the feeding until after 11:00. I gave him 8 oz of 30 calorie formula over close to 3 hours. That didn't go all that well. He was very restless and when I went in to see if I could settle him, he vomited all over us.

Part of not being tubed and drinking very small quantities has meant that he hasn't had his miralax since Wednesday. I fed him some prunes today which apparently kicked in at about midnight. I think the combo of that plus the very rich formula did him in. Hopefully going forward that won't be such an issue. I'm sure we'll have to tweak the approach to night time supplementing as time goes on.

For now, we just go forward one day at a time. Robbie will go back to daycare tomorrow. I'm a little nervous about how he'll do there, but hopeful. He usually eats better there than home. But I also know they have more to think about all day than asking Robbie if he wants a drink every 20 minutes or so. Keep the prayers coming.


Sunday, May 2, 2010

Tube weaning: Day 2

Today was better.

Robbie woke up earlier than usual, about 7:30. I got him up and changed and then we had some snuggle time. He wanted to go play and almost immediately it because apparent he was cranky. Right away, I offered him some apple juice. That just made him angrier. MUCH angrier.

At this point I was really worried. I knew he was cranky because he was hungry and/or thirsty. But if he wouldn't even take that cue to try something, we were in trouble.

As I stood here wondering if it was hopeless, I remembered some advice from my preemie board to try warmed milk instead of cold. I was skeptical, but willing to try anything, so I warmed 2 oz of milk in the infatrainer cup (it only holds 80ml) and hoped for the best.

I got him snuggled up onto my lap the way we used to bottle feed and dripped a little milk in his mouth. Right away, he settled down and licked his lips. He looked decidedly pleased. So we kept going. While he was drinking, sip by slow, deliberate sip, Becky called to check in. She was pleased to hear things were already looking up. We were nearly buzzing on the phone, all the while Robbie is sipping milk.

And then he finished it!
I got up and warmed some more. The whole 80ml this time. And he drank all of that, too! That's 4 2/3 oz for those of you who haven't memorized the conversion. It took about 40 minutes to get all of it down, and that last 1/2 oz did seem to be a good bit more work, but he did it.

I gave him about 15 minutes to digest a little, then tried some solids. He ate about 2oz of baby food. Not a lot, but considering that his stomach now had over 6oz of volume in it, I felt pretty good. His tube feedings were 7oz of milk.

Around 11, he climbed into my lap for another snuggle, so I offered again and he drank another 1/2 oz but then started to get agitated. I was frustrated and wanted more but quickly gave myself a talk about not pushing and letting Robbie learn what he needed.

At noon, I offered both juice & milk, both of which were met with immediate anger. I quickly switched approaches and tried solids. Another 2oz. Not a lot, but it was something.

Then came nap time. He slept about 2 hours and woke up in a good mood. I gave him a few minutes to play, then just asked him if he wanted a drink. He quickly turned his head to the side and said no. (Hey, if nothing else, this experiment taught him a new word, right?) I didn't even try.

We went for solids again. This time it was chicken with gravy, which is probably his favorite meal. (Don't ask me. I think it smells like dog food, too.) and that went EXTREMELY well. Not only did he eat the whole thing, but he was self feeding! He's loved to "stir" forever. Doesn't matter if it's real stirring or pretend stirring, he likes to mix a spoon into a cup or bowl. This time he was stirring and came away with a bit of food stuck to the spoon and stuck it in his mouth. I cheered, then encouraged him to do it again. He actually complied!

Any time he'd start to resist my efforts to feed him, I'd ask him first to stir, then to "take a bite." and he'd do it. He wasn't getting a lot in his mouth from his efforts, but it was something. And if he had his mouth open, I could give him a bite from my spoon.

Shortly after feeding time, we all headed out. David's car was in the shop (insert deep sigh here.) and then we had a Derby party to attend. I had very mixed feelings about the party. I really, really wanted to go but I was so worried about what it would mean for Robbie. Would he eat at all away from home? If he got hungry or thirsty would he turn into a whining, sobbing mess and annoy all the guests? We talked to the hostess about playing it by ear and decided to go.

Fortunately it went well. Robbie was in heaven because the house set up allowed him to come inside and outside at will and he proceeded to do so approximately 437 times. The hostess of the party is an amazing cook, so we were all eating and watching the Derby. Robbie [s]stole toys from[/s] played with the other kids. After the Derby itself was over (thanks for nothin', Line Of David) one of the kids at the party who is near Robbie's age was enjoying a sippy of milk. I hoped that peer pressure might work in my favor and warmed Robbie's cup as well.

We found a chair and I gave it a shot. Much to my surprise, he was happy again! My friends at the party were so supportive. They asked if they could cheer a little, wanting to, but also not wanting to spook him. Cheering ensued. Robbie looked proud. I certainly was. He ended up drinking about 3oz before he was ready to go play again. It was awesome.

We headed home, arriving with about an hour before Robbie's bedtime. We had a little snuggle/play time and I found myself wondering if I could get him to drink just a little bit before bed. A lot of kids like to drink before settling down for the night, right? So I filled a cup with 4 oz of warmed milk and crossed my fingers.

Success again! He snuggled up into my arms and let me dribble milk into his mouth again. At this point he just seemed so content. He was cozied up in my lap and just looked happy. I remembered when I'd seen this look before. More than a year and a half ago, home from the NICU, happily eating in his mother's arms. I thought of all the months of tender moments we'd missed because feeding was a burden instead of a bond.

I knew this process would be emotional. I prepared myself for frustration, worry, and disappointment. But I hadn't expected all the retrospection and regret. I hadn't anticipated to find myself sobbing while watching my nearly 2 year old sip milk. But there I was anyway. David seemed confused. "Why are you crying? This is a good thing." I couldn't explain without crying more, so I muttered something about just being overwhelmed. He was clearly still lost, but let it drop.

He shortly started to get a little antsy, so I pulled out the big guns- I turned on Handy Manny. He instantly froze and settled in for a good time with some talking tools. All the while, he was letting me give him tiny tastes from a Playtex Sipper. In the end, it was another 3oz. (95ml, to be exact.)

I was thrilled. After his show was over and I was properly chastised for singing along with the tools (this suddenly is very unacceptable behavior) we did the bedtime routine and put him to bed. It might have taken him 87 seconds to fall asleep. It was a very busy day.

By the end of the days, he'd taken 11.4 oz of milk and 6.5 oz of baby food. (And a few cheez-its, but who's counting?) That gave him 406 calories for the day. He needs more than double that to thrive on, but for today, it was enough to survive on, both for his body and my fortitude.


Saturday, May 1, 2010

Tube Weaning: Day 1

Thursday night, Robbie got his usual bedtime tube feeding- 7 oz of whole milk.
Normally at 12:30am, he'd get a slower drip of 26 calorie formula. That was the first thing we skipped.

He slept through the night just fine, which I expected. Woke up this morning and seemed content. I purposely skipped his morning nexium simply because that would involve giving him 1/2 ounce of water, and I wanted him thirsty.

I sent him to daycare with two Playtex sippers. One with 8 oz of milk, the other with 8 oz of apple juice. I also sent an infatrainer cup just for a different choice.

Later morning, I got a text from daycare with the message "Someone is drinking" with the photo you see.

I was walking on air!

When I got free at work, I called to check in. Katie reported that he'd been playing with the cup a lot but didn't seem to be drinking, so she took the valve out. (I'd warned her that he doesn't suck, so that was probably going to need to be done.) He'd drank for a while and laughed and had a good time. Then he started playing and dumping it, so she put the valve back in.

They fed him breakfast and lunch. Each time he ate 3oz of purees. (That's pretty normal for him.) At that time, he was sleeping.

When I went to get him, she said he'd taken a few sips of juice, and drank a little more milk. I was so excited!

Then I opened the cups to see how much was gone. Almost none. I deflated.

When I got home, I measured it out. He drank right at an ounce of milk. There was just over an ounce of apple juice gone, but Katie said he really spilled a lot of that. He'd mostly played with it and maybe taken two swallows. Not much.

I offered more milk and he let me dribble a little in his mouth, but quickly started turning his head away and saying no.

I tried again at bath time (he sometimes will drink from an open cup in the bathtub) but we had more face hiding and "no!" (Though I swear it sounds more like he's saying "yeah" than "no" I know what he means.)

So he went to bed having consumed less than 1.5 ounces of liquid and 260 calories. A normal day really should have 20 oz of liquid and 1000 calories.

I wish I could say I felt more positive. I wish I didn't feel scared that this wasn't going to work. Logically, I want to say that if it doesn't, it's okay, we'll just go back to tubing like we were before. But I'm scared what it MEANS. If he fails, does that mean it will never work? Will he be a kid who has to take liquid through a tube when he's 20?

I think he'll get there with food. He's showing enough interest in flavors and self-feeding that I think some day, even if it's years from now, he'll "get" the food thing. But if he's so liquid averted that he never can take it, will he need a tube forever? I'm just scared.

It just wasn't a really good day. I overslept by a lot this morning and had to rush. Then I managed to really get my feelings hurt and end up angry over some comments made about kids with special needs and spent half the morning fighting tears.
Then the photo came from daycare and I was just so elated. To find out that it really had only been an ounce was just such a let down.

I feel so guilty that I feel let down, but I just do. He HAS to be thirsty, so why is he fighting it?

I keep thinking about the day he got his ear tubes and he drank 6oz of apple juice in about 20 minutes. He clearly CAN do it. That day he hadn't drank in about 12 hours and had been crying for an hour. He also was doped up on Ativan. I can't help but wonder how much that Ativan had to do with it. If it helped relieve his anxiety about drinking and that's why it worked.

I do believe it's mostly behavioral that he won't. But how do I combat that?

I just don't know.

Then, of course, there are so many variables. Maybe the 8oz of solid food sated him enough not to need drink. Maybe I should withhold solids for the weekend? But maybe that would be worse. Maybe he just needs a different kind of cup. Maybe he needs a different kind of juice.

I seriously have at least 6 different kinds of cups here and 5 kinds of juice. But who knows which combo might work, if any?

There is just so much unknown.

As stressful as the tube is, at least it's KNOWN. I KNOW I can get his calories in. I KNOW he's hydrated. I KNOW he'll be okay. Now, I don't.

I don't even know if I'll be okay.

I really appreciated all your comments and emails of support. Please keep them and the prayers coming. It really means a lot to me.