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.
-Trish
Thursday, May 20, 2010
Thursday, May 13, 2010
Ideas
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.
--Trish
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.
--Trish
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.
--Trish
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.
Clare
Mia
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!
--Trish
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.
Clare
Mia
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!
--Trish
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.
--Trish
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.
--Trish
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