This morning the phone rang at 7:30. That's an unGodly hour around here (I'm working 2nd shift these days. I sleep until Robbie gets up, usually around 8:30 or 9.) Robbie heard it and immediately started shouting "Hallo! HALLO? HALLO!" (yes, his hello sounds oddly British.) I did not answer the phone, but I did smile at my son's immediate response. Fortunately he went right back to sleep. Kids are amazing.
After we then got up at a more decent hour (closer to 9) I checked the voicemail. It was my RE's secretary calling to get some info for preauthorization. Whoa. That sure felt real. I spoke to her when I set up the appointment, but this was like... really happening. Our appointment is in 4 days. Really.
When I called her back, she seemed short, though. It surprised me because she's usually quite friendly. This time, however, she seemed annoyed. She asked a few questions about our history, so she could apply for the pre-auth. Then she asked what our coverage is. I told her it was 100% because it is mandated in Illinois. (The clinic is in Missouri but since I live and work in Illinois, those laws apply.) She seemed almost irritated, "They're going to cover it..........again?" Um, yes?
After we hung up, her tone had me worried, so I double checked the statute in Illinois. There is no provision about number of children. It will only pay for 2 egg retrievals (for IVF) after a live birth, but that is the only reference to previous children at all. After I confirmed that, I set about being annoyed.
I'm not sure what her tone was implying. Perhaps she thinks the law is stupid? Skeptical that the medical coverage is truly there. Maybe she even thinks it's selfish to want a second child? I honestly don't know. Whatever it was, it certainly made me defensive.
The feeling of selfishness is something I've really struggled with. The fertiles of the world often imply that any infertile attempting to conceive is selfish. "But there are so many babies in the world who need parents." (Not sure why they aren't out adopting all these babies themselves. Maybe they can pick up a cute one for me while they're at the baby store. But I digress.) And then there is the fact that I DID conceive and have this amazing little boy with a transient British accent. How can I want more?
I know that having a child is selfish on some level. The reasons or background don't matter. Bringing another life into the world purely for the joy of watching them grow is selfish. And here I am hoping to do it again. I can't help but feel a little guilty about it. (Guilt IS what I do best.)
Hearing that tone today, it hurt. And it also brought back a lot of feelings of inadequacy that have been buried for a while. Having been out of the infertility closet for so long, it's actually rare that those feelings creep in. But it's funny how a careless comment or disapproving tone can dredge them all back up. I hadn't missed them at all.
But regardless of snotty secretaries or my own unresolved guilt, we are moving forward. Four days and counting.
--Trish
Thursday, December 30, 2010
Thursday, December 23, 2010
Getting There
I confess that a busy schedule isn't the only reason for my infrequent postings recently. A large portion of why I've been quiet is because I just don't want to talk about it. That's unusual for me as I usually want to talk about everything (both online and off) and the dark, twisty stuff more so than anything else. But I just don't. I don't know if I haven't processed all my thoughts or I just am not sure if I want to hear everyone else's, but I just haven't been ready. What is the elephant in the room? Another baby. Or I guess, more specifically, trying to have another baby.
The decision is made. January 3, we have our second first appointment at the fertility clinic. That came only after my OB appointment, multiple surgical appointments to ultimately remove my gallbladder and a few appointments with a particularly bitchy MFM. We are going to try again. I wonder if the dildocam has missed me?
People mostly seem excited when they hear. As usual, we're mostly out of the closet about stuff. I haven't exactly been volunteering the information (see above "I don't want to talk about it.") but people ask and I answer honestly. Yes, we are hoping to have another. "So exciting!" they say. I wish I could muster even a portion of their enthusiasm. Mostly I'm just terrified.
I'm not so much scared to actually try again. At this point, the fertility clinic feels no different to me than grocery shopping; mundane, but necessary. The best I can hope for is someone acting crazy so I have a good story to tell. I really like my R.E. and I know what to expect for the most part. There is always the possibility that David's latest sperm count is even more abysmal than before and we have to go straight to IVF, but as we're fortunate enough to have infertility coverage, that isn't as terrifying as it could be.
I'm not even so scared that it won't work again. The first round of fertility treatments left me anxious and bitchy. Every waking moment was filled with the terror that I would never get to be a mother. That is something I can cross off my list. I know the joy of motherhood and like it so much that I want to do it again. I would be immensely sad not to have another child, but that is no longer the worst thing I can think of.
No, my biggest fear is getting pregnant again, getting sick again, and delivering early again. It could happen even earlier this time- maybe before viability. Maybe my baby won't even make it out of me alive. Maybe it happens around the same time or even a little later, but he or she doesn't make it. Maybe I'll watch my baby die. Maybe even the exact same thing happens and our NICU stay is the same and the baby turns out to be happy and amazing just like Robbie. The difference this time will be sitting at my baby's bedside knowing I took this risk on purpose. Every time a tube is stuffed down his throat or a needle jabbed into his vein, I'll know that I CHOSE this. Indeed, the worst thing I can think of right now is hurting another baby.
Dr. Bitchy (as my MFM shall now be known) says my risk is 12-25% of getting sick again. It "should" happen later. It "should" be less severe. She hopes I can make it to 36 or 37 weeks. I am to count on bed rest at some point. She also made sure to tell us that we needed to be risk takers to do this again; that we had to accept that having another baby meant risking our futures, our marriage, even Robbie's future if we have a disabled child. In her opinion, a disabled child is "worse" than a dead one. I found that impressively offensive, but I know she was trying to prepare us for the (her) worst. I can't imagine spending your days seeing nothing but patients who have gotten bad news would lead to the sunniest outlook on life and pregnancy.
I've been tested 7 ways from Sunday and found to be nothing but perfectly healthy. The girl at the hospital lab made me chuckle when she repeated "this is a lot of blood" over and over again when I had my labs drawn. They were all normal. I dutifully peed in a jug for 24 hours and proved that my kidneys completely recovered from the onslaught the preeclampsia gave them. My MFM was surprised. My kidneys were in worse shape than I knew, but they have completely recovered. She said we gave her "angst" and she'd prefer we adopt for find a surrogate (yes, with that money tree I have growing in the backyard) but that she would sign off on us trying and see us through to the end- whenever that may be.
She's adamant that we can not have a multiple pregnancy. She's very displeased about ART. I'm afraid there's not much to say about that. We haven't prevented pregnancy since Robbie's birth. Two and a half years later, and not so much as a late period. I will discuss with my RE ways to mitigate the risk of multiples, but fertility treatments are a necessity for us, obviously.
I know that there are people who think we're nuts to even try. Hell, I think we're nuts to try. But I also know that it could go the other way. I could go full term and have a nice, fat, healthy, hungry, full-term baby. Or something else entirely could go wrong. Pregnancy is the riskiest time in a woman's life, after all. We've discussed it and done what we can to mitigate our risks (which really consists of losing some weight and praying a lot) and are choosing to go forward.
I know that if things go badly- either really badly or just a little badly- I'm going to feel guilty. I'm going to BE guilty. But I also know that the rewards that come from this risk are unbelievably amazing. As unique as our parenting experience has been, I've never been happier. I want to be a mom again. It's just the getting there that sucks.
--Trish
The decision is made. January 3, we have our second first appointment at the fertility clinic. That came only after my OB appointment, multiple surgical appointments to ultimately remove my gallbladder and a few appointments with a particularly bitchy MFM. We are going to try again. I wonder if the dildocam has missed me?
People mostly seem excited when they hear. As usual, we're mostly out of the closet about stuff. I haven't exactly been volunteering the information (see above "I don't want to talk about it.") but people ask and I answer honestly. Yes, we are hoping to have another. "So exciting!" they say. I wish I could muster even a portion of their enthusiasm. Mostly I'm just terrified.
I'm not so much scared to actually try again. At this point, the fertility clinic feels no different to me than grocery shopping; mundane, but necessary. The best I can hope for is someone acting crazy so I have a good story to tell. I really like my R.E. and I know what to expect for the most part. There is always the possibility that David's latest sperm count is even more abysmal than before and we have to go straight to IVF, but as we're fortunate enough to have infertility coverage, that isn't as terrifying as it could be.
I'm not even so scared that it won't work again. The first round of fertility treatments left me anxious and bitchy. Every waking moment was filled with the terror that I would never get to be a mother. That is something I can cross off my list. I know the joy of motherhood and like it so much that I want to do it again. I would be immensely sad not to have another child, but that is no longer the worst thing I can think of.
No, my biggest fear is getting pregnant again, getting sick again, and delivering early again. It could happen even earlier this time- maybe before viability. Maybe my baby won't even make it out of me alive. Maybe it happens around the same time or even a little later, but he or she doesn't make it. Maybe I'll watch my baby die. Maybe even the exact same thing happens and our NICU stay is the same and the baby turns out to be happy and amazing just like Robbie. The difference this time will be sitting at my baby's bedside knowing I took this risk on purpose. Every time a tube is stuffed down his throat or a needle jabbed into his vein, I'll know that I CHOSE this. Indeed, the worst thing I can think of right now is hurting another baby.
Dr. Bitchy (as my MFM shall now be known) says my risk is 12-25% of getting sick again. It "should" happen later. It "should" be less severe. She hopes I can make it to 36 or 37 weeks. I am to count on bed rest at some point. She also made sure to tell us that we needed to be risk takers to do this again; that we had to accept that having another baby meant risking our futures, our marriage, even Robbie's future if we have a disabled child. In her opinion, a disabled child is "worse" than a dead one. I found that impressively offensive, but I know she was trying to prepare us for the (her) worst. I can't imagine spending your days seeing nothing but patients who have gotten bad news would lead to the sunniest outlook on life and pregnancy.
I've been tested 7 ways from Sunday and found to be nothing but perfectly healthy. The girl at the hospital lab made me chuckle when she repeated "this is a lot of blood" over and over again when I had my labs drawn. They were all normal. I dutifully peed in a jug for 24 hours and proved that my kidneys completely recovered from the onslaught the preeclampsia gave them. My MFM was surprised. My kidneys were in worse shape than I knew, but they have completely recovered. She said we gave her "angst" and she'd prefer we adopt for find a surrogate (yes, with that money tree I have growing in the backyard) but that she would sign off on us trying and see us through to the end- whenever that may be.
She's adamant that we can not have a multiple pregnancy. She's very displeased about ART. I'm afraid there's not much to say about that. We haven't prevented pregnancy since Robbie's birth. Two and a half years later, and not so much as a late period. I will discuss with my RE ways to mitigate the risk of multiples, but fertility treatments are a necessity for us, obviously.
I know that there are people who think we're nuts to even try. Hell, I think we're nuts to try. But I also know that it could go the other way. I could go full term and have a nice, fat, healthy, hungry, full-term baby. Or something else entirely could go wrong. Pregnancy is the riskiest time in a woman's life, after all. We've discussed it and done what we can to mitigate our risks (which really consists of losing some weight and praying a lot) and are choosing to go forward.
I know that if things go badly- either really badly or just a little badly- I'm going to feel guilty. I'm going to BE guilty. But I also know that the rewards that come from this risk are unbelievably amazing. As unique as our parenting experience has been, I've never been happier. I want to be a mom again. It's just the getting there that sucks.
--Trish
Wednesday, December 15, 2010
Christmas
Am I the only person who feels like Christmas is killing them this year? I'm convinced it's because it falls on the weekend. That makes us lose that last weekend of preparedness. We're doing in-law Christmas this weekend and spending real Christmas with my family. That means I have to be ready like....uh.. now!
We also had/have a number of parties this month. Last weekend we did a birthday party an adoption shower in the same day, the day after a work party for David's work. This week I have a work potluck, a potluck at Robbie's daycare, and all the baking I'm doing for gifts, then preparing for the Faux Christmas weekend. Next week, I have another work party and David's potluck (he's cooking for himself, but using one of my recipes, so I'll be involved) and then of course, Actual Christmas. I'm wiped out!
Things are honestly pretty good around home, just busy. Robbie's eating pretty well. We began using an appetite stimulant and it seems to be working. He's not eating much more than usual, but it definitely made him thirsty. He went from averaging 2-3 oz/day to probably more like 5-10oz/day. I wish he would drink more milk (or even juice, anything with calories, really) but he still much prefers water. School and we encourage milk, but he will bring an empty cup and say "ah-ter!" He knows what he wants.
Speaking of speaking, man is the language coming quickly now! In barely over a month he's gone from 37 words to hundreds, regularly using 2 word sentences and now beginning three. He's able to express his needs and desires with words most of the time (though he's also shrieking incessantly. I'm really at my wit's end with the screeeaaamming.) and that has really changed the dynamic at home.
The other night he kept saying "Assipah! Assipah!" I had no idea what he was walking about. "Yes, dear, assipah.. mm-hmm." Until he finally brought me a container of applesauce and shoved it at me, obviously frustrated that I didn't understand English. "ASSIPAH, momma! ASSIPAH!"
I asked him to say apple- "App-uh."
I asked for sauce- "sawssse."
Say applesauce! "ASSIPAH!"
You win some, you lose some. All in all, though, it feels like a lot of winning. David and I go to bed at night recapping all the adorable and amazing things he's done all day. We sound like giggling morons telling each other repeatedly, "he's so cute." Sometimes I'm not sure if Robbie is cuter, or David's love of Robbie is. Suffice it to say that family satisfaction is pretty high right now.
I sure hope it can continue through Christmas. David's been very helpful. I'm glad I married a pretty domesticated man. He's doing most of the cooking for faux-Christmas and even taking off a day to do the house cleaning so we don't have to rush around. I've been in charge of all decorating and shopping. I think it's a good deal, really. I'll take toy shopping over toilet scrubbing almost any day.
Will try to do a better job of keeping up with the blog. There are lots of other things floating through my head almost constantly, but by the time I sit down to write, it's all gone. I need to carry a notebook. You know, after Christmas.
--Trish
We also had/have a number of parties this month. Last weekend we did a birthday party an adoption shower in the same day, the day after a work party for David's work. This week I have a work potluck, a potluck at Robbie's daycare, and all the baking I'm doing for gifts, then preparing for the Faux Christmas weekend. Next week, I have another work party and David's potluck (he's cooking for himself, but using one of my recipes, so I'll be involved) and then of course, Actual Christmas. I'm wiped out!
Things are honestly pretty good around home, just busy. Robbie's eating pretty well. We began using an appetite stimulant and it seems to be working. He's not eating much more than usual, but it definitely made him thirsty. He went from averaging 2-3 oz/day to probably more like 5-10oz/day. I wish he would drink more milk (or even juice, anything with calories, really) but he still much prefers water. School and we encourage milk, but he will bring an empty cup and say "ah-ter!" He knows what he wants.
Speaking of speaking, man is the language coming quickly now! In barely over a month he's gone from 37 words to hundreds, regularly using 2 word sentences and now beginning three. He's able to express his needs and desires with words most of the time (though he's also shrieking incessantly. I'm really at my wit's end with the screeeaaamming.) and that has really changed the dynamic at home.
The other night he kept saying "Assipah! Assipah!" I had no idea what he was walking about. "Yes, dear, assipah.. mm-hmm." Until he finally brought me a container of applesauce and shoved it at me, obviously frustrated that I didn't understand English. "ASSIPAH, momma! ASSIPAH!"
I asked him to say apple- "App-uh."
I asked for sauce- "sawssse."
Say applesauce! "ASSIPAH!"
You win some, you lose some. All in all, though, it feels like a lot of winning. David and I go to bed at night recapping all the adorable and amazing things he's done all day. We sound like giggling morons telling each other repeatedly, "he's so cute." Sometimes I'm not sure if Robbie is cuter, or David's love of Robbie is. Suffice it to say that family satisfaction is pretty high right now.
I sure hope it can continue through Christmas. David's been very helpful. I'm glad I married a pretty domesticated man. He's doing most of the cooking for faux-Christmas and even taking off a day to do the house cleaning so we don't have to rush around. I've been in charge of all decorating and shopping. I think it's a good deal, really. I'll take toy shopping over toilet scrubbing almost any day.
Will try to do a better job of keeping up with the blog. There are lots of other things floating through my head almost constantly, but by the time I sit down to write, it's all gone. I need to carry a notebook. You know, after Christmas.
--Trish
Thursday, December 2, 2010
Tube-Fed Kid in the news
The Today show did a story on a tube-fed kid today. It's short and not terribly detailed, but it's so rare to see anything about a tube-fed kid in the news, I had to share.
I'm certain the feeding clinic they are referring to is the Graz clinic, which is the model of tube weaning our method has been based upon.
--Trish
I'm certain the feeding clinic they are referring to is the Graz clinic, which is the model of tube weaning our method has been based upon.
--Trish
Tuesday, November 30, 2010
Word explosion
Three weeks ago, Robbie still only had 37 words. They were sporadic, usually only when pressed, and some labeling (kitty, while pointing, for example.) He babbled all the time, but didn't really say much.
Today Robbie has roughly 110 words. Possibly more, it's hard to keep up.
He's learning to use his words to ask for what he needs. This morning he insisted "off off off" while tugging on his pajama shirt sleeve. He apparently needed to be shirtless. Last night at dinner, he needed "cheese!" It's awesome.
I have loved getting to know him a little more, seeing some of the workings of his brain. I now know that he loves clocks and lights. I know because he points out every single one of them that he sees. Do you know how many lights and clocks there are in the world? A lot. No, I mean a lot. It's cute, but exhausting. He isn't happy until you acknowledge each light or clock he has pointed out. "Yes honey, it's a clock, same as it was 45 seconds ago."
In a really interesting discovery, it turns out that Robbie knows some of his letters. He's been saying "O" for a a week or two. There is a big O from his puzzle mat that he carries around a lot. I figured he'd memorized that it was called an O. Then one day he insisted on having a wooden R from his shelf, calling it by name "Awr!" (These days he's made it a two syllable word- "awrer!") He loves that wooden R, sometimes needing to sleep with it at night.
Then he started naming all the Bs he saw- on the wall, in books, on signs. Okay, now he knows all the letters from Rob. That makes sense, there are a lot of those around the house. But this weekend, all of a sudden, he was naming Fs & As & Ds- picking them out of a pile of letters or on a page. How can he have 100 words and 6 of them be letters? I've been joking that he's going to be able to read before he can speak in sentences. That's my Robbie; he always does things in a unique way.
With the language explosion, he's definitely parroting everything we say. He doesn't know what everything means, but he retains a lot of it quickly. That works out nicely because it's a good way to distract him. If you really need to get his attention, you just ask him to repeat his ABCs. It's win-win- he behaves and he learns!
I think this about every stage, but so far this is my favorite. Getting to hear his adorable little voice all the time just makes my whole day. I think you should hear it, too.
--Trish
Today Robbie has roughly 110 words. Possibly more, it's hard to keep up.
He's learning to use his words to ask for what he needs. This morning he insisted "off off off" while tugging on his pajama shirt sleeve. He apparently needed to be shirtless. Last night at dinner, he needed "cheese!" It's awesome.
I have loved getting to know him a little more, seeing some of the workings of his brain. I now know that he loves clocks and lights. I know because he points out every single one of them that he sees. Do you know how many lights and clocks there are in the world? A lot. No, I mean a lot. It's cute, but exhausting. He isn't happy until you acknowledge each light or clock he has pointed out. "Yes honey, it's a clock, same as it was 45 seconds ago."
In a really interesting discovery, it turns out that Robbie knows some of his letters. He's been saying "O" for a a week or two. There is a big O from his puzzle mat that he carries around a lot. I figured he'd memorized that it was called an O. Then one day he insisted on having a wooden R from his shelf, calling it by name "Awr!" (These days he's made it a two syllable word- "awrer!") He loves that wooden R, sometimes needing to sleep with it at night.
Then he started naming all the Bs he saw- on the wall, in books, on signs. Okay, now he knows all the letters from Rob. That makes sense, there are a lot of those around the house. But this weekend, all of a sudden, he was naming Fs & As & Ds- picking them out of a pile of letters or on a page. How can he have 100 words and 6 of them be letters? I've been joking that he's going to be able to read before he can speak in sentences. That's my Robbie; he always does things in a unique way.
With the language explosion, he's definitely parroting everything we say. He doesn't know what everything means, but he retains a lot of it quickly. That works out nicely because it's a good way to distract him. If you really need to get his attention, you just ask him to repeat his ABCs. It's win-win- he behaves and he learns!
I think this about every stage, but so far this is my favorite. Getting to hear his adorable little voice all the time just makes my whole day. I think you should hear it, too.
--Trish
Wednesday, November 17, 2010
Awareness
Today is November 17. November 17 is National Prematurity Awereness Day. The March of Dimes has asked bloggers to blog for our preemies in honor of this day.
Last year I spoke about what it really means to be a preemie; that a preemie isn't just a small baby, but an unfinished one. All of his systems are underdeveloped leaving him at risk of infection, disease, and overstimulation. But it doesn't just stop when those systems finish developing.
The damage done to a baby born early is not easily overcome. For a baby like Robbie- not "just" a preemie, but a micropreemie- it can often take years before he will be able to catch up from the damage done to him. For Robbie, it means that almost every accomplishment he makes comes with an asterisk. Even when it goes unspoken, the implication is there.
When someone says how big he is, they mean in comparison to the pound and a half he was born at. He still hovers at the bottom edge of the growth charts. He is significantly smaller than children even more than a year younger than him in his daycare class.
When they comment on how well he's eating, they mean compared to 6 months or a year ago when 100% of his nutrition had to be pumped directly into his stomach, not to other children his age. He still has an extra hole in his stomach by which we keep him hydrated enough to live.
When we talk about how active he is, we marvel that he's doing so well now considering a year ago he wasn't even rolling over. Two and a half years later, we still struggle to overcome the damage his body sustained in being born 14 weeks early. He still gets daily medicine to treat his hypersensitive stomach.
We still fight the damage done to his lungs by being born before they were done developing, from the pressure put on them from the ventilator that kept him alive until he could breathe on his own. He takes a breathing treatment of steroids every night all winter because even a slight sniffle goes straight to his lungs causing him to gasp and wheeze. When he gets that sniffle, we double that dose and add another drug to dilate the passages in his lungs so that he can breathe.
He's come a very, very long way. We've gone from seventeen sessions of therapy a month to just 9. We only see one specialist every 4 months instead of the sometimes weekly treks we made during our darkest times. He no longer receives calories or nutrition through his G-tube, just hydration. He's going through a language explosion, beginning to communicate with us with more than just whines or grunts or the occasional sign. But he isn't done yet.
As his mother, I'm not sure I'll ever overcome the anxiety that prematurity brought to our lives. Even if he woke up tomorrow completely caught up, I would still over analyze small things, wondering if it's another symptom of his early birth. When he squints one eye to point at something, his therapists write notes about checking his vision- the effects of the oxygen on his eyes could show up at any time. When he resists a textured ball, it's called a sensory problem attributed to his nervous system experiences too much too soon. As his mother, I know in my head that these are just cute quirks that are part of Robbie, but the fact that they come into question is just another gift that prematurity has given us. I watch closely, balancing a fine line of vigilance and security.
Of course, being a mother to a preemie brings a lot of unique pleasures. Tonight, Robbie sat on my lap letting me feed him bites of steak & carrots while I fought tears of joy. I'm not sure I'll ever stop marveling at the pleasure of seeing him thrive. It's something that parents of children born knowing how to eat take for granted.
Robbie's birth also brought a lot of amazing people into my life. From parents of babies in the NICU with Robbie to other parents I've met online, I'm blessed to be surrounded by parents who also marvel in the small things (and I don't just mean the size of our babies!)
The experience of parenting a child who was born early or spent a long time in the NICU is unique enough that early this year I founded a message board for parents of these babies born too soon. These other parents have been a huge resource for us. While we all lean on and appreciate each other, the one thing we all agree on is that it's a club we wish we never needed to join. We are a sorority whose initiation is worse than any hazing the Greek system could imagine. We all dream of a day when we can close our membership.
Currently one in 8 babies born in the U.S. is born too soon. Each day nearly 1500 families give birth to a baby who will come with extra scrutiny and worry; a baby who comes with asterisks with even a question as simple as "how old is he?" It's a club that's way too large.
So on this day, I ask that you think of our babies. Right now at a hospital near you, a mother is wringing her hands, staring at a monitor instead of her baby's eyes. She's praying they can all make it through the night. She's wondering about today, tomorrow and next year. She's feeling guilty, wondering if she could have done something different. She's looking into the faces of the strangers caring for her not-yet-supposed-to-be-newborn, hoping they know how important that tiny bundle hooked up to all the wires really is.
These worries are real. Many babies don't make it. Many have issues that won't be outgrown. Many will, but only with a lot of hard work and worry.
We are very blessed that Robbie's lingering issues have been manageable. He is expected to outgrow them, though no one can say when. God and medicine, and the March of Dimes, has given us the opportunity to see our miracle's smile and hear his laughter every day. Not everyone is so lucky.
--Trish
Last year I spoke about what it really means to be a preemie; that a preemie isn't just a small baby, but an unfinished one. All of his systems are underdeveloped leaving him at risk of infection, disease, and overstimulation. But it doesn't just stop when those systems finish developing.
The damage done to a baby born early is not easily overcome. For a baby like Robbie- not "just" a preemie, but a micropreemie- it can often take years before he will be able to catch up from the damage done to him. For Robbie, it means that almost every accomplishment he makes comes with an asterisk. Even when it goes unspoken, the implication is there.
When someone says how big he is, they mean in comparison to the pound and a half he was born at. He still hovers at the bottom edge of the growth charts. He is significantly smaller than children even more than a year younger than him in his daycare class.
When they comment on how well he's eating, they mean compared to 6 months or a year ago when 100% of his nutrition had to be pumped directly into his stomach, not to other children his age. He still has an extra hole in his stomach by which we keep him hydrated enough to live.
When we talk about how active he is, we marvel that he's doing so well now considering a year ago he wasn't even rolling over. Two and a half years later, we still struggle to overcome the damage his body sustained in being born 14 weeks early. He still gets daily medicine to treat his hypersensitive stomach.
We still fight the damage done to his lungs by being born before they were done developing, from the pressure put on them from the ventilator that kept him alive until he could breathe on his own. He takes a breathing treatment of steroids every night all winter because even a slight sniffle goes straight to his lungs causing him to gasp and wheeze. When he gets that sniffle, we double that dose and add another drug to dilate the passages in his lungs so that he can breathe.
He's come a very, very long way. We've gone from seventeen sessions of therapy a month to just 9. We only see one specialist every 4 months instead of the sometimes weekly treks we made during our darkest times. He no longer receives calories or nutrition through his G-tube, just hydration. He's going through a language explosion, beginning to communicate with us with more than just whines or grunts or the occasional sign. But he isn't done yet.
As his mother, I'm not sure I'll ever overcome the anxiety that prematurity brought to our lives. Even if he woke up tomorrow completely caught up, I would still over analyze small things, wondering if it's another symptom of his early birth. When he squints one eye to point at something, his therapists write notes about checking his vision- the effects of the oxygen on his eyes could show up at any time. When he resists a textured ball, it's called a sensory problem attributed to his nervous system experiences too much too soon. As his mother, I know in my head that these are just cute quirks that are part of Robbie, but the fact that they come into question is just another gift that prematurity has given us. I watch closely, balancing a fine line of vigilance and security.
Of course, being a mother to a preemie brings a lot of unique pleasures. Tonight, Robbie sat on my lap letting me feed him bites of steak & carrots while I fought tears of joy. I'm not sure I'll ever stop marveling at the pleasure of seeing him thrive. It's something that parents of children born knowing how to eat take for granted.
Robbie's birth also brought a lot of amazing people into my life. From parents of babies in the NICU with Robbie to other parents I've met online, I'm blessed to be surrounded by parents who also marvel in the small things (and I don't just mean the size of our babies!)
The experience of parenting a child who was born early or spent a long time in the NICU is unique enough that early this year I founded a message board for parents of these babies born too soon. These other parents have been a huge resource for us. While we all lean on and appreciate each other, the one thing we all agree on is that it's a club we wish we never needed to join. We are a sorority whose initiation is worse than any hazing the Greek system could imagine. We all dream of a day when we can close our membership.
Currently one in 8 babies born in the U.S. is born too soon. Each day nearly 1500 families give birth to a baby who will come with extra scrutiny and worry; a baby who comes with asterisks with even a question as simple as "how old is he?" It's a club that's way too large.
So on this day, I ask that you think of our babies. Right now at a hospital near you, a mother is wringing her hands, staring at a monitor instead of her baby's eyes. She's praying they can all make it through the night. She's wondering about today, tomorrow and next year. She's feeling guilty, wondering if she could have done something different. She's looking into the faces of the strangers caring for her not-yet-supposed-to-be-newborn, hoping they know how important that tiny bundle hooked up to all the wires really is.
These worries are real. Many babies don't make it. Many have issues that won't be outgrown. Many will, but only with a lot of hard work and worry.
We are very blessed that Robbie's lingering issues have been manageable. He is expected to outgrow them, though no one can say when. God and medicine, and the March of Dimes, has given us the opportunity to see our miracle's smile and hear his laughter every day. Not everyone is so lucky.
--Trish
Monday, November 8, 2010
Half Baked
I really love to read. And I really, really love when a book makes me nod in agreement or laugh out loud or cry. Even better if I find that I want to highlight a passage (though I don't like to maim books that way!) or read it to the nearest person. I'm reading one of those now.
Even though I usually prefer light reads, fiction of the mystery persuasion, most often, this particular book couldn't be more true life. It's Half Baked by Alexa Stevenson. A lot of you probably know her from Flotsam.
For those who don't, Alexa had 2 miscarriages and then conceived twins via IVF. She lost her son, Ames at 22w and her daughter, Simone, was born just shy of 26. Infertility, miscarriage, prematurity.... that thud you just heard was something hitting me close to home.
I'm sixteen chapters (just under half way) in and I've laughed out loud at least a half dozen times, cried twice and today I annoyed my husband immensely by insisting on reading him a paragraph that spoke especially loudly to me. (He hates when I read to him. Robbie was also pushing his play mower through the house just then, so I was shouting.) It's definitely a good book.
Alexa messaged me a few times after Robbie was born, lending her support to another member of this crappy club. I think we emailed a few times, though to be honest, my memories of the months in the NICU are very spotty. I've followed her blog since then and was thrilled when she was published. I kept intending to get the book, but being a procrastinator, I just never did. Then someone on my preemie board read it and was gushing about its greatness. And then another person bought it and did the same.
Ultimately, we decided to do a book exchange. We started a list and would pass it along as we finished. I added my name. But as more people read it and gushed, I found there was no way I could wait, so last week I ordered myself a copy and felt a little smug that I'd just helped out a fellow IF/NICU-survivor/blogger mom. Then I checked the mail all week waiting for it to come. I was thrilled when it arrived a full day before the USPS told me it would. Way to go postal system!
I started it that night, reading until after 2am even though I had to be up 6. It was a busy weekend, but I've been sneaking away to read a chapter here or there whenever I could. Robbie's lucky he's so cute. Anyone else who interrupted my reading would have been cut in two.
I would still be reading now except that I know I have to sleep at some point, and I decided to stop at the end of a chapter that didn't end with me crying, so sixteen it was. And I should be in bed, but I really needed everyone to know that this book is good. Alexa is a great writer, of course. And man does she have a way of explaining things where I keep randomly wanting to shout "yes! that is it exactly!" even though every other living creature in my home has been sleeping for hours.
So if you're looking for a great book, really, truly, honestly.. go buy it. Just don't expect to sleep for a few days.
--Trish
P.S. no, this is not a paid or otherwise solicited review. I have no idea of Alexa keeps up with my blog at all. She is currently on blog hiatus, so for all I know she's in some horrible place w/o electricity. Really, this isn't even a review because I'm not done with the book yet. But go read it anyway. Seriously.
Even though I usually prefer light reads, fiction of the mystery persuasion, most often, this particular book couldn't be more true life. It's Half Baked by Alexa Stevenson. A lot of you probably know her from Flotsam.
For those who don't, Alexa had 2 miscarriages and then conceived twins via IVF. She lost her son, Ames at 22w and her daughter, Simone, was born just shy of 26. Infertility, miscarriage, prematurity.... that thud you just heard was something hitting me close to home.
I'm sixteen chapters (just under half way) in and I've laughed out loud at least a half dozen times, cried twice and today I annoyed my husband immensely by insisting on reading him a paragraph that spoke especially loudly to me. (He hates when I read to him. Robbie was also pushing his play mower through the house just then, so I was shouting.) It's definitely a good book.
Alexa messaged me a few times after Robbie was born, lending her support to another member of this crappy club. I think we emailed a few times, though to be honest, my memories of the months in the NICU are very spotty. I've followed her blog since then and was thrilled when she was published. I kept intending to get the book, but being a procrastinator, I just never did. Then someone on my preemie board read it and was gushing about its greatness. And then another person bought it and did the same.
Ultimately, we decided to do a book exchange. We started a list and would pass it along as we finished. I added my name. But as more people read it and gushed, I found there was no way I could wait, so last week I ordered myself a copy and felt a little smug that I'd just helped out a fellow IF/NICU-survivor/blogger mom. Then I checked the mail all week waiting for it to come. I was thrilled when it arrived a full day before the USPS told me it would. Way to go postal system!
I started it that night, reading until after 2am even though I had to be up 6. It was a busy weekend, but I've been sneaking away to read a chapter here or there whenever I could. Robbie's lucky he's so cute. Anyone else who interrupted my reading would have been cut in two.
I would still be reading now except that I know I have to sleep at some point, and I decided to stop at the end of a chapter that didn't end with me crying, so sixteen it was. And I should be in bed, but I really needed everyone to know that this book is good. Alexa is a great writer, of course. And man does she have a way of explaining things where I keep randomly wanting to shout "yes! that is it exactly!" even though every other living creature in my home has been sleeping for hours.
So if you're looking for a great book, really, truly, honestly.. go buy it. Just don't expect to sleep for a few days.
--Trish
P.S. no, this is not a paid or otherwise solicited review. I have no idea of Alexa keeps up with my blog at all. She is currently on blog hiatus, so for all I know she's in some horrible place w/o electricity. Really, this isn't even a review because I'm not done with the book yet. But go read it anyway. Seriously.
Thursday, November 4, 2010
Cheese
Thank you to everyone with your kind words. It does help to know I'm not alone.
We did have a better day today. Coincidence? Prayer? The lack of oil I gave him yesterday? Who knows. I just know I'll take it.
He snacked well and ate a whole sandwich for lunch. (The rest of the center had taco lasagna, but they made Robbie a grilled turkey & cheese because of the corn. I love them.)Dinner brought panic and pleasure.
I made him some meatballs & veggie bites. He's previously refused to try the meatballs although I was pretty sure he'd love them if he'd just try. He has been braver about new things lately, so I gave it a shot. I cut one into 4 pieces. Small enough to put in his mouth but big enough to need chewing. Apparently he didn't think he needed to chew it and choked. I don't mean gagged, but actual choking where I could hear him wheezing a small amount of air around the lodged food. David pounded on his back as I flashed back to my Heimlich training and rushed over to start. Just about that time, he got it up. I asked nervously if David was sure he was breathing. (Yes.)
I thought for certain dinner was over then, but after David broke the meatballs up even smaller, Robbie proceeded to eat almost 5 of them. We left a few whole and he even nibbled on those. I guess they were big enough he knew he had to bite those.
David and I were having burritos. As we were preparing things, Robbie pointed to each ingredient and wanted to touch it. He refused everything except the bag of shredded cheese. And then he was in heaven. He likes cheese anyway, but I've never seen him stuff something in his mouth so quickly. It was awesome- two handfuls at a time.
After the 4th or 5th refill, I grabbed the camera to record for posterity. I wanted to get him to take a drink of water while I was filming so everyone could see that, too. (He's getting so good at it. He can drink without spilling now! If only he'd drink more than 2 oz a day.) I didn't succeed in catching drinking, but you do get to hear him speaking a little. And you get to see his cute little wink when he points. When he points to something at a distance, he squints one eye and turns his head like "if you just look RIGHT over there..."
It's pretty cute.
Without further ado: Robbie Eats Cheese.
--Trish
We did have a better day today. Coincidence? Prayer? The lack of oil I gave him yesterday? Who knows. I just know I'll take it.
He snacked well and ate a whole sandwich for lunch. (The rest of the center had taco lasagna, but they made Robbie a grilled turkey & cheese because of the corn. I love them.)Dinner brought panic and pleasure.
I made him some meatballs & veggie bites. He's previously refused to try the meatballs although I was pretty sure he'd love them if he'd just try. He has been braver about new things lately, so I gave it a shot. I cut one into 4 pieces. Small enough to put in his mouth but big enough to need chewing. Apparently he didn't think he needed to chew it and choked. I don't mean gagged, but actual choking where I could hear him wheezing a small amount of air around the lodged food. David pounded on his back as I flashed back to my Heimlich training and rushed over to start. Just about that time, he got it up. I asked nervously if David was sure he was breathing. (Yes.)
I thought for certain dinner was over then, but after David broke the meatballs up even smaller, Robbie proceeded to eat almost 5 of them. We left a few whole and he even nibbled on those. I guess they were big enough he knew he had to bite those.
David and I were having burritos. As we were preparing things, Robbie pointed to each ingredient and wanted to touch it. He refused everything except the bag of shredded cheese. And then he was in heaven. He likes cheese anyway, but I've never seen him stuff something in his mouth so quickly. It was awesome- two handfuls at a time.
After the 4th or 5th refill, I grabbed the camera to record for posterity. I wanted to get him to take a drink of water while I was filming so everyone could see that, too. (He's getting so good at it. He can drink without spilling now! If only he'd drink more than 2 oz a day.) I didn't succeed in catching drinking, but you do get to hear him speaking a little. And you get to see his cute little wink when he points. When he points to something at a distance, he squints one eye and turns his head like "if you just look RIGHT over there..."
It's pretty cute.
Without further ado: Robbie Eats Cheese.
--Trish
Wednesday, November 3, 2010
Weary
Sometimes when I'm feeling really down and defeated, I go back through my own blog and look where we were a year ago.. or two.
Tonight I was looking for an old post (which I never found, btw) and was reading through some of my NICU days posts. I wish I could say they made me feel better. For once, they didn't.
What I found myself thinking was "man, that sucked." I was also surprised at how upbeat and energetic so many of my posts sounded. I didn't feel that way at all. But that's a story for another day. Today, I just kept thinking how I thought our eating woes would be over once he learned how. How naive, I was.
It's really amazing what a few days of poor eating can do to my psyche. Robbie moves along as energetic as always; a little crankier perhaps, but never tired. Instead it as though he is drawing the energy he needs from me, leaving me exhausted and broken.
It isn't just the eating. There are other things. Some family stuff that has too much backstory to explain, some work stuff that sound trivial when written out but adds to my anxiety level nonetheless. Yesterday Robbie bit me in the face. He was angry because I was singing along with the Backyardigans (he hates that) and his only solution was to lash out. Unfortunately for both of us, my face was the closest thing to his teeth.
It surprised me how much it upset me. I mean, yes, it physically stung for a while. He didn't break the skin but he did leave a mark. That, however, was the least of it. After he'd gone to bed (with a very sullen bedtime routine), I sat in the quiet and cried. Biting is such a typical 2 year old thing to do. Certainly for a 2 year old with a speech delay that keeps him from expressing himself with words. But it felt like pretty much the crappiest milestone ever. Biting is so.... so aggressive. How could my sweet little boy bite me?
His daycare teacher was unsurprised this morning. She thinks he got it from two kids in his class who "are biters." That was a little comforting, but also worrisome. I don't want him to be bitten nor do I want him to bite anyone. I'm hoping that improved communication skills will help. His speech is improving quite a lot the last 2 weeks. We've gone from maybe 40 words to a lot of parroting and spontaneous words. Tonight he pointed to me and pronounced me "Mama!" Man, that felt good.
I wish I could say it made up for the last 4 days of crap, but it didn't. I know it will pass. A good night's sleep would do me a world of good. But I'm writing this from my bed- my brain too swirled with thoughts to settle down.
All night long I ponder and research. I mentally calculate the day's calories. I double check product labels to see which crackers have the most calories. I triple check to make sure he hasn't been eating anything with hidden corn in it, wondering if that could cause the eating slow down. I wish for the billionth time that he could just tell me what he wants to eat. I sneak into his room and watch him sleep, his even breathing and peaceful face reassuring that he is okay for now.
I was reminded today of a time back in the hospital when my favorite neonatologist told me that he wished he had a crystal ball. I might not like what he saw in it, but I would be okay. He might tell me that Robbie would have 4 infections and go home a month after his due date, but after I was upset, I would accept it and go forward. He was so right. I feel that way even now.
If I had a crystal ball. If I could look ahead and see Robbie at 5 or 15 growing and healthy and happy, even if I also had to see ages 2 and 3 and 4 or even 12 & 13 of him underweight and still battling at every meal, at least I could mentally prepare myself for that journey. But there are no crystal balls in life. You would think by now I'd accept that.
I think most days I do okay. But days like today, I'm just tired. I just want him to eat and grow. I don't want to know the entire chemical composition of a miniature Kit Kat bar. I don't want fret about undelivered medical supplies or if the bruise on his back is from a normal play or if maybe it's a sign that he's anemic. I don't want to have to explain a second belly button to children or wonder if the mom at the next table is judging me because my kid is eating Raisinettes for dinner.Sometimes, it all just gets to be too much.
Becky emailed earlier to ask how I was doing. My reply was as simple as I could state it.
Tired.
Beat.
Busted.
Burned out.
Weary.
Tonight I was looking for an old post (which I never found, btw) and was reading through some of my NICU days posts. I wish I could say they made me feel better. For once, they didn't.
What I found myself thinking was "man, that sucked." I was also surprised at how upbeat and energetic so many of my posts sounded. I didn't feel that way at all. But that's a story for another day. Today, I just kept thinking how I thought our eating woes would be over once he learned how. How naive, I was.
It's really amazing what a few days of poor eating can do to my psyche. Robbie moves along as energetic as always; a little crankier perhaps, but never tired. Instead it as though he is drawing the energy he needs from me, leaving me exhausted and broken.
It isn't just the eating. There are other things. Some family stuff that has too much backstory to explain, some work stuff that sound trivial when written out but adds to my anxiety level nonetheless. Yesterday Robbie bit me in the face. He was angry because I was singing along with the Backyardigans (he hates that) and his only solution was to lash out. Unfortunately for both of us, my face was the closest thing to his teeth.
It surprised me how much it upset me. I mean, yes, it physically stung for a while. He didn't break the skin but he did leave a mark. That, however, was the least of it. After he'd gone to bed (with a very sullen bedtime routine), I sat in the quiet and cried. Biting is such a typical 2 year old thing to do. Certainly for a 2 year old with a speech delay that keeps him from expressing himself with words. But it felt like pretty much the crappiest milestone ever. Biting is so.... so aggressive. How could my sweet little boy bite me?
His daycare teacher was unsurprised this morning. She thinks he got it from two kids in his class who "are biters." That was a little comforting, but also worrisome. I don't want him to be bitten nor do I want him to bite anyone. I'm hoping that improved communication skills will help. His speech is improving quite a lot the last 2 weeks. We've gone from maybe 40 words to a lot of parroting and spontaneous words. Tonight he pointed to me and pronounced me "Mama!" Man, that felt good.
I wish I could say it made up for the last 4 days of crap, but it didn't. I know it will pass. A good night's sleep would do me a world of good. But I'm writing this from my bed- my brain too swirled with thoughts to settle down.
All night long I ponder and research. I mentally calculate the day's calories. I double check product labels to see which crackers have the most calories. I triple check to make sure he hasn't been eating anything with hidden corn in it, wondering if that could cause the eating slow down. I wish for the billionth time that he could just tell me what he wants to eat. I sneak into his room and watch him sleep, his even breathing and peaceful face reassuring that he is okay for now.
I was reminded today of a time back in the hospital when my favorite neonatologist told me that he wished he had a crystal ball. I might not like what he saw in it, but I would be okay. He might tell me that Robbie would have 4 infections and go home a month after his due date, but after I was upset, I would accept it and go forward. He was so right. I feel that way even now.
If I had a crystal ball. If I could look ahead and see Robbie at 5 or 15 growing and healthy and happy, even if I also had to see ages 2 and 3 and 4 or even 12 & 13 of him underweight and still battling at every meal, at least I could mentally prepare myself for that journey. But there are no crystal balls in life. You would think by now I'd accept that.
I think most days I do okay. But days like today, I'm just tired. I just want him to eat and grow. I don't want to know the entire chemical composition of a miniature Kit Kat bar. I don't want fret about undelivered medical supplies or if the bruise on his back is from a normal play or if maybe it's a sign that he's anemic. I don't want to have to explain a second belly button to children or wonder if the mom at the next table is judging me because my kid is eating Raisinettes for dinner.Sometimes, it all just gets to be too much.
Becky emailed earlier to ask how I was doing. My reply was as simple as I could state it.
Tired.
Beat.
Busted.
Burned out.
Weary.
Wednesday, October 27, 2010
Fingertips
If I've said it once, I've said it a thousand times- parenting is not for the faint of heart. Tube weaning continues and I guess it continues well, though how much I really believe that varies day-to-day, sometimes hour-to-hour.
He's down nearly 2 pounds. He didn't really have 2 pounds to spare. He wasn't skinny before, but he was definitely slim. He really hasn't gained weight in months, but he had gained a little height, so he'd already gotten quite slim. Now he's downright skinny. I dread taking his shirt off and when he leans over a bit and I can see each of his ribs, I literally have to look away. He appears to have stopped losing weight, which is good. But dear God, I need him to gain some.
The last few days I've had to fight the urge to tube him some calories time and time again. I'm still not ready to say that I won't. Right now he's only getting 14oz of water and 2 tsp of olive oil in the tube. I keep considering switching out some of the water for milk. Right now 18 calories per ounce sounds like heaven.
He drinks at least a little water every day but does not show much interest in drinking anything with calories in it. We did have a good report last week that he'd finished the few ounces they put in his cup and then they refilled it and he drank a little more, but that was an anomaly. The only thing keeping me from tubing more calories is the fear of turning off any trigger his body has that eating equals living.
He really is eating well, honestly. There are bad days, certainly. Sunday he had a meltdown (related to being two, not related to eating) and refused to eat anything except two slices of American cheese for dinner. But then he woke up at 3am starving and proceeded to eat 36 Cheez-Its before finally deciding he could sleep again. (Yes, I counted. It was 3am, what else was I going to do?) We also have Hallow Leg Days, which may as well be called "Fill Trish's Soul" days for how good they feel. Mostly we have what I would deem adequate days. If we could just get even a paltry amount of liquid calories into him, he'd be in far better shape. For now, I just have to be content to see him drink water.
He definitely has turned a sharp corner with drinking. While he's not drinking enough that I feel like I can further reduce his night drip, he now reliably drinks SOMETHING every day. He really prefers an open cup to just about anything else. This leads to a lot of messes in our house. He is slowly understanding that you don't have to tip the cup completely upside down to get something, but it is a bit painstaking. You don't dare help him, though. He's two now and needs to do it by himself. Any attempt to guide the cup so that he doesn't half drown himself results in him throwing the cup across the room. We now have an official "time out" spot with which he is becoming familiar.
I feel pretty confident that he's going to get there (wherever "there" may be) with drinking soon. Soon to me means hopefully before he's 3. With Robbie, you never know. It could be tomorrow. He likes to do things in bursts. The question for me now is if or when he will start to eat and/or drink enough to not just survive, but thrive.
I feel almost selfish or ungrateful for saying that. The fact that he is now eating enough to survive is incredible. It's been two years since I've had confidence that he could or would. It will be two years in November since his eating went dramatically downhill. I still have a running excel file of everything he's consumed the last two years to prove it. It starts November 14, 2008. We actually kept track on paper before that. The really interesting thing about that (beyond being a shining example of my OCD) is that it STOPS on October 18, 2010. Yes, that's correct, I've stopped charting his food intake.
Don't get me wrong, I still do a mental calculation of everything he consumes. I'm a walking encyclopedia of the caloric content of anything remotely toddler chewable. But I'm not writing it all down, adding it up and calculating the ratio of calories to kilos of weight. The reason? It's too hard now. He is now, at 27 months, finally off baby food. There are still a few containers sitting in a bowl where he can get to them if he wants them and I'll probably try to sneak them in for a quickie meal on a busy Saturday sometime, but that's it. He now eats table food just like a big boy. And it's a lot harder to keep track of. You cut a grilled cheese into 100 bites size pieces and then try to keep track of how many eat eat, how many he threw and the cat ate, and how many are left when he's done.
At daycare, it's even worse. The kids steal food from each other all the time. Things end up in the floor from who knows where. Sometimes extra food gets shoved at each other. I had to stifle a laugh the other day when one of my favorite classmates of Robbie's absolutely INSISTED that Robbie eat a piece of his chicken. Robbie was having no part of it. It was good to see I'm not the only one who can't force him to eat. The reports home say "turkey sandwich- all, green beans-most, apples- none." but I don't know how much turkey was on the sandwich or what the serving size of green beans was. I know that they tell me he's one of the better eaters in the class and I have to accept that. I make sure to keep them stocked with high calorie snacks (since most of theirs are not corn-free, I supply almost all of his from home) and hope for the best.
I can see improvement all over the place and it makes me feel good, but one look at those ribs again and my own stomach starts to churn. Intellectually, I know this is temporary. We're only a month into a very real tube-wean and the weaned kids often take months to start to gain again, but sometimes, I don't know if I have it in me to keep going. I have a drive to nourish him and no matter how much my brain says this is good for him in the long run, my heart aches to fix it now.
As much as it is difficult to watch Robbie go through, it's also very isolating for me. When Robbie is having a tantrum because I told him he can't climb the table and jump off and I need to commiserate, lots of friends can nod and smile and chuckle and tell me that it does get better someday. But Robbie's unique in a lot of very good and very frustrating ways.
As uncommon as it is to have a tube-fed kid, it's even more uncommon to find a family who has weaned from a tube. Becky gets the brunt of my neurosis in hours-long late-night phone calls. But the rest of the day, I'm just wringing my hands hoping I'm not fucking him up any more than absolutely necessary. People ask how he's doing and I answer that he's doing well, but like everything, the answer comes with an asterisk. "He's doing well*."
*he ate yesterday and even drank an ounce of water, which is gobs better than a few months ago, but he still has a tube and doesn't really talk and I don't know if it's him or because I'm an utter fuck up as a mother.
I never speak the asterisk aloud, but some people will go on "Oh good! So he's eating now?" and again, I have no idea how to answer that. Yes, he does, but not quite enough and yes, he still has a tube and no, I don't know when he'll get rid of it, but if you could consult your magic 8 ball, I'd kinda like to know, too. Being polite, though, I usually just say he's getting there and try to move along. It's just not something that your average person understands, and if one more person asks if I've tried feeding him ice cream, I'm afraid I'll end up in jail. The headline will read "Mother of Non-Eating Child Arrested for Stabbing Man with a Spork." I wonder if they'd let Robbie visit during chow-time? He eats better in a group.
All in all, I do a lot of internal hand-wringing. I think I'm outwardly holding it together pretty well, but there are days I feel like I'm holding on to the ledge of reason with just my fingertips. I'm just waiting for Robbie to throw me a rope.
--Trish
He's down nearly 2 pounds. He didn't really have 2 pounds to spare. He wasn't skinny before, but he was definitely slim. He really hasn't gained weight in months, but he had gained a little height, so he'd already gotten quite slim. Now he's downright skinny. I dread taking his shirt off and when he leans over a bit and I can see each of his ribs, I literally have to look away. He appears to have stopped losing weight, which is good. But dear God, I need him to gain some.
The last few days I've had to fight the urge to tube him some calories time and time again. I'm still not ready to say that I won't. Right now he's only getting 14oz of water and 2 tsp of olive oil in the tube. I keep considering switching out some of the water for milk. Right now 18 calories per ounce sounds like heaven.
He drinks at least a little water every day but does not show much interest in drinking anything with calories in it. We did have a good report last week that he'd finished the few ounces they put in his cup and then they refilled it and he drank a little more, but that was an anomaly. The only thing keeping me from tubing more calories is the fear of turning off any trigger his body has that eating equals living.
He really is eating well, honestly. There are bad days, certainly. Sunday he had a meltdown (related to being two, not related to eating) and refused to eat anything except two slices of American cheese for dinner. But then he woke up at 3am starving and proceeded to eat 36 Cheez-Its before finally deciding he could sleep again. (Yes, I counted. It was 3am, what else was I going to do?) We also have Hallow Leg Days, which may as well be called "Fill Trish's Soul" days for how good they feel. Mostly we have what I would deem adequate days. If we could just get even a paltry amount of liquid calories into him, he'd be in far better shape. For now, I just have to be content to see him drink water.
He definitely has turned a sharp corner with drinking. While he's not drinking enough that I feel like I can further reduce his night drip, he now reliably drinks SOMETHING every day. He really prefers an open cup to just about anything else. This leads to a lot of messes in our house. He is slowly understanding that you don't have to tip the cup completely upside down to get something, but it is a bit painstaking. You don't dare help him, though. He's two now and needs to do it by himself. Any attempt to guide the cup so that he doesn't half drown himself results in him throwing the cup across the room. We now have an official "time out" spot with which he is becoming familiar.
I feel pretty confident that he's going to get there (wherever "there" may be) with drinking soon. Soon to me means hopefully before he's 3. With Robbie, you never know. It could be tomorrow. He likes to do things in bursts. The question for me now is if or when he will start to eat and/or drink enough to not just survive, but thrive.
I feel almost selfish or ungrateful for saying that. The fact that he is now eating enough to survive is incredible. It's been two years since I've had confidence that he could or would. It will be two years in November since his eating went dramatically downhill. I still have a running excel file of everything he's consumed the last two years to prove it. It starts November 14, 2008. We actually kept track on paper before that. The really interesting thing about that (beyond being a shining example of my OCD) is that it STOPS on October 18, 2010. Yes, that's correct, I've stopped charting his food intake.
Don't get me wrong, I still do a mental calculation of everything he consumes. I'm a walking encyclopedia of the caloric content of anything remotely toddler chewable. But I'm not writing it all down, adding it up and calculating the ratio of calories to kilos of weight. The reason? It's too hard now. He is now, at 27 months, finally off baby food. There are still a few containers sitting in a bowl where he can get to them if he wants them and I'll probably try to sneak them in for a quickie meal on a busy Saturday sometime, but that's it. He now eats table food just like a big boy. And it's a lot harder to keep track of. You cut a grilled cheese into 100 bites size pieces and then try to keep track of how many eat eat, how many he threw and the cat ate, and how many are left when he's done.
At daycare, it's even worse. The kids steal food from each other all the time. Things end up in the floor from who knows where. Sometimes extra food gets shoved at each other. I had to stifle a laugh the other day when one of my favorite classmates of Robbie's absolutely INSISTED that Robbie eat a piece of his chicken. Robbie was having no part of it. It was good to see I'm not the only one who can't force him to eat. The reports home say "turkey sandwich- all, green beans-most, apples- none." but I don't know how much turkey was on the sandwich or what the serving size of green beans was. I know that they tell me he's one of the better eaters in the class and I have to accept that. I make sure to keep them stocked with high calorie snacks (since most of theirs are not corn-free, I supply almost all of his from home) and hope for the best.
I can see improvement all over the place and it makes me feel good, but one look at those ribs again and my own stomach starts to churn. Intellectually, I know this is temporary. We're only a month into a very real tube-wean and the weaned kids often take months to start to gain again, but sometimes, I don't know if I have it in me to keep going. I have a drive to nourish him and no matter how much my brain says this is good for him in the long run, my heart aches to fix it now.
As much as it is difficult to watch Robbie go through, it's also very isolating for me. When Robbie is having a tantrum because I told him he can't climb the table and jump off and I need to commiserate, lots of friends can nod and smile and chuckle and tell me that it does get better someday. But Robbie's unique in a lot of very good and very frustrating ways.
As uncommon as it is to have a tube-fed kid, it's even more uncommon to find a family who has weaned from a tube. Becky gets the brunt of my neurosis in hours-long late-night phone calls. But the rest of the day, I'm just wringing my hands hoping I'm not fucking him up any more than absolutely necessary. People ask how he's doing and I answer that he's doing well, but like everything, the answer comes with an asterisk. "He's doing well*."
*he ate yesterday and even drank an ounce of water, which is gobs better than a few months ago, but he still has a tube and doesn't really talk and I don't know if it's him or because I'm an utter fuck up as a mother.
I never speak the asterisk aloud, but some people will go on "Oh good! So he's eating now?" and again, I have no idea how to answer that. Yes, he does, but not quite enough and yes, he still has a tube and no, I don't know when he'll get rid of it, but if you could consult your magic 8 ball, I'd kinda like to know, too. Being polite, though, I usually just say he's getting there and try to move along. It's just not something that your average person understands, and if one more person asks if I've tried feeding him ice cream, I'm afraid I'll end up in jail. The headline will read "Mother of Non-Eating Child Arrested for Stabbing Man with a Spork." I wonder if they'd let Robbie visit during chow-time? He eats better in a group.
All in all, I do a lot of internal hand-wringing. I think I'm outwardly holding it together pretty well, but there are days I feel like I'm holding on to the ledge of reason with just my fingertips. I'm just waiting for Robbie to throw me a rope.
--Trish
Friday, October 15, 2010
Worth it
As much stress & anxiety I felt about tubing water into Robbie, I don't regret it at all. I almost hesitate to write down how well things have been going. I'm a little superstitious, what can I say? But there is no denying that things are different now; different in a very good way.
I was worried about him starting the new childcare center because of his feeding issues. I knew the adjustment would be okay. He's a resilient kid who rarely sees a stranger. He likes people. I figured it would take a few days to really relax, but he'd do fine. However, I was very worried about his feeding issues. Would he eat? Would they let him feed them? Would they be patient enough to get him to eat? Would they take his corn allergy seriously? Would they remember his rules? Man, did I have it wrong!
He did adjust to the new people pretty well. We are having a bit of clinging at the drop off. Not so much that he doesn't want to stay, more than he doesn't want me to leave, but as long as I stay and hang out for a few minutes first, he does fine. Sleep, however, was elusive. He finally took his first nap this week on Tuesday- his 7th day at the new center. I was beginning to worry he was going to stop napping altogether and we were not ready for that.
Eating has been amazing, though. Our first day, we went through the menu and marked through anything with corn. They asked a lot of questions. I demonstrated the tube, they asked good questions. I was apprehensive and they were quick to put my fears at ease. The first few days, they fed him separately from the other kids in an effort to keep him from the corn. He ate well. They called several times to confirm what he could and couldn't have. I brought in several corn-free alternatives in an effort to keep him similarly to the other children. The teachers seems genuinely excited to report his progress each day.
At first, he didn't drink at all while there, but he would come home and drink a little each night. He has more interest in an open cup than any kind of sippy or straw. He frequently comes and taps my water glass, requesting a drink. It's not a lot of volume, but a few ounces each day. It gives me a little thrill each time.
Every night, his report would indicate good eating. He now sits at the table with the other kids. One day when I dropped him off just as lunch was being served, they served him first. As they placed a plate of chili mac in front of him, I thought "yeah, okay. It'll be all baby food today." But before I could even finish my negative thought, he picked up a piece of macaroni and ate it. I had to pick my jaw up out of the floor. Every day has been that way. One report indicated that he'd eaten some carrots. I went in the next day and asked them what the hell kind of magical carrots they are serving there. Peer pressure is a magical thing.
The teachers are fantastic about reading his needs and doing what they can to get more calories into him. Several days he's had no baby food at all because he's eaten so well. But they still added calories to his food, trying to help beef him up a little. They are definitely part of Team Robbie.
This week he has started to drink small amounts at daycare as well. It's not a lot. An ounce here or there. But he's taken in enough that last night reduced the water I gave him at night to 14oz. Yesterday he drank 2.5oz of milk at daycare and probably 6oz of water at home. Today, I swear I don't think he went 5 minutes w/o eating something at any time. it was actually hard to keep up with him.
I reorganized the open shelf where we store all of "his" food. All of his snack food is now at his eye-level, all drinks and cups within reach. I figured if it works for supermarket marketing, it might work for us. It did. At one point he actually brought me a container of prunes and wanted them. He ate them all. An hour later (eating crackers in the mean time) he brought me another container of prunes and a spoon. Mommy, feed me! I thought a second container of prunes was a bad idea and managed to convince him that applesauce was a better option. He gobbled it all down then went straight back to snacking. A few minutes later, he brought a package of organic fruit bites. He'd never had anything quite that chewy. It was funny to watch him figure it out. The first one took a minute, the rest of the package were scarfed down. I couldn't help but stare.
Even David commented yesterday that he just can't get used to it. Seeing our son eat is the best high in the world. Of course, that comes with a lot of lows when he doesn't. God knows when he rejects food, when he throws it, when he goes all day and eats nothing but Goldfish Crackers, my soul weeps. But a day like today keeps me going.
His feeding therapist came today for the first time in four weeks. (Bureaucracy. Gotta love it.) She was amazed as well. She feels like we've rounded a corner. It's really just a matter of getting his drinking going.
He needs around 950 calories a day. He's averaging around 700 by mouth. Today he probably broke 800. (It's much harder to track when he's eating non stop.) He has lost just over a pound since this last tube wean. Fortunately he has stopped losing and seems to be holding steady. He was a little lower, but those were very dehydrated days, so I think he's hit a stable point. We just need to get him to eat enough to gain. It's not uncommon for that to take a few months, which I'm trying to focus on. It is extremely difficult to see him so skinny, though. I can see every rib when he breathes; his hip bones protrude as if taunting me.
It's definitely not for the faint of heart, this tube-weaning. His therapists help. At this point I think they're giving me more therapy than him. They are glad we're pressing forward. They're impressed with how well he's doing. Their encouragement is.... well..encouraging. This is a task that is very difficult, but seeing him improve day by day is amazing. It's so worth it.
--Trish
I was worried about him starting the new childcare center because of his feeding issues. I knew the adjustment would be okay. He's a resilient kid who rarely sees a stranger. He likes people. I figured it would take a few days to really relax, but he'd do fine. However, I was very worried about his feeding issues. Would he eat? Would they let him feed them? Would they be patient enough to get him to eat? Would they take his corn allergy seriously? Would they remember his rules? Man, did I have it wrong!
He did adjust to the new people pretty well. We are having a bit of clinging at the drop off. Not so much that he doesn't want to stay, more than he doesn't want me to leave, but as long as I stay and hang out for a few minutes first, he does fine. Sleep, however, was elusive. He finally took his first nap this week on Tuesday- his 7th day at the new center. I was beginning to worry he was going to stop napping altogether and we were not ready for that.
Eating has been amazing, though. Our first day, we went through the menu and marked through anything with corn. They asked a lot of questions. I demonstrated the tube, they asked good questions. I was apprehensive and they were quick to put my fears at ease. The first few days, they fed him separately from the other kids in an effort to keep him from the corn. He ate well. They called several times to confirm what he could and couldn't have. I brought in several corn-free alternatives in an effort to keep him similarly to the other children. The teachers seems genuinely excited to report his progress each day.
At first, he didn't drink at all while there, but he would come home and drink a little each night. He has more interest in an open cup than any kind of sippy or straw. He frequently comes and taps my water glass, requesting a drink. It's not a lot of volume, but a few ounces each day. It gives me a little thrill each time.
Every night, his report would indicate good eating. He now sits at the table with the other kids. One day when I dropped him off just as lunch was being served, they served him first. As they placed a plate of chili mac in front of him, I thought "yeah, okay. It'll be all baby food today." But before I could even finish my negative thought, he picked up a piece of macaroni and ate it. I had to pick my jaw up out of the floor. Every day has been that way. One report indicated that he'd eaten some carrots. I went in the next day and asked them what the hell kind of magical carrots they are serving there. Peer pressure is a magical thing.
The teachers are fantastic about reading his needs and doing what they can to get more calories into him. Several days he's had no baby food at all because he's eaten so well. But they still added calories to his food, trying to help beef him up a little. They are definitely part of Team Robbie.
This week he has started to drink small amounts at daycare as well. It's not a lot. An ounce here or there. But he's taken in enough that last night reduced the water I gave him at night to 14oz. Yesterday he drank 2.5oz of milk at daycare and probably 6oz of water at home. Today, I swear I don't think he went 5 minutes w/o eating something at any time. it was actually hard to keep up with him.
I reorganized the open shelf where we store all of "his" food. All of his snack food is now at his eye-level, all drinks and cups within reach. I figured if it works for supermarket marketing, it might work for us. It did. At one point he actually brought me a container of prunes and wanted them. He ate them all. An hour later (eating crackers in the mean time) he brought me another container of prunes and a spoon. Mommy, feed me! I thought a second container of prunes was a bad idea and managed to convince him that applesauce was a better option. He gobbled it all down then went straight back to snacking. A few minutes later, he brought a package of organic fruit bites. He'd never had anything quite that chewy. It was funny to watch him figure it out. The first one took a minute, the rest of the package were scarfed down. I couldn't help but stare.
Even David commented yesterday that he just can't get used to it. Seeing our son eat is the best high in the world. Of course, that comes with a lot of lows when he doesn't. God knows when he rejects food, when he throws it, when he goes all day and eats nothing but Goldfish Crackers, my soul weeps. But a day like today keeps me going.
His feeding therapist came today for the first time in four weeks. (Bureaucracy. Gotta love it.) She was amazed as well. She feels like we've rounded a corner. It's really just a matter of getting his drinking going.
He needs around 950 calories a day. He's averaging around 700 by mouth. Today he probably broke 800. (It's much harder to track when he's eating non stop.) He has lost just over a pound since this last tube wean. Fortunately he has stopped losing and seems to be holding steady. He was a little lower, but those were very dehydrated days, so I think he's hit a stable point. We just need to get him to eat enough to gain. It's not uncommon for that to take a few months, which I'm trying to focus on. It is extremely difficult to see him so skinny, though. I can see every rib when he breathes; his hip bones protrude as if taunting me.
It's definitely not for the faint of heart, this tube-weaning. His therapists help. At this point I think they're giving me more therapy than him. They are glad we're pressing forward. They're impressed with how well he's doing. Their encouragement is.... well..encouraging. This is a task that is very difficult, but seeing him improve day by day is amazing. It's so worth it.
--Trish
Monday, October 4, 2010
A new day
It's been an emotionally trying week. Several months ago, I wrote about a story of a mother starving her children. At the time, I wrote that starving your children is harder than it looks. I stand by that statement now.
Of course, I'm not starving him on purpose. There is food available to him 24 hours a day. There are usually no less than 3 cups of various liquids available at any time as well. Really, I just spent the week letting him starve himself. It is physically and emotionally draining for both of us.
The first two days, he drank nearly nothing. He ate averagely, and his mood was okay. The third day, I saw some improvement. He drank just under 6oz throughout the day, but that was 6 oz more than he normally would and I felt pretty good about it. Then he backslid again, taking only a few ounces of milk from a syringe the next day; my confidence waned.
The next day brought elation. He drank approximately 15oz all day. I told a few friends that I thought we'd turned the corner. We were done with the tube. While I was supremely excited, I was also fretting. While he interest in food was expanding again, he couldn't keep up with his caloric needs and I could see him wasting away in front of me. His hip bones seemed to taunt me at every diaper change. His ribs lost their ticklish allure with no padding on them. His energy level was pretty decent, his mood was not. But I was still resolute- this was it.
Thursday night I decided that I needed to tube him a little bit of just water. He hadn't had more than 15oz of hydration in any given day all week and I was beginning to worry about his kidneys. I snuck in long after he was asleep and bolused in just 5 oz of plain water. He wouldn't be up for another 9 or 10 hours. He'd be thirsty by then, surely.
Friday was my birthday. Robbie decided 34 was the year for anxiety. He refused to drink nearly all day. By mid-day I was fighting tears. I tried to tell myself that it was just the usual tube-weaning protest. At one point during the week, he'd even found his extension tube and came running towards me with it with an expression that seemed to read "don't worry mommy, I found it, we can go back to this now..." He knew what was happening and didn't like it. I told myself that he was just testing me. But something felt off.
I talked to Becky and fought the urge to cry. She rightly called me on my guilt about the water. She assured me there wasn't a wrong thing to do. She didn't think the water was mistake, but that even if it was, that we'd all made mistakes along the way and nothing is so big that it can't be overcome. They were words I needed to hear and I felt better afterward. I decided to feed him some baby food that afternoon. God knew he needed the calories and the hydration they provided would make me feel better. He drank a few ounces later in the evening, but very little. He ultimately consumed only 3.5 ounces for the entire day.
Saturday was only slightly better, totaling around 5 ounces. Today he might have reached six. He sipped his milk occasionally, showing more interest in water for my glass than any of his (and yes, before you ask, he has his own open cup available as well.) and I was glad to oblige him.
There were successes along the way. Friday, he absolutely insisted on having a chocolate covered raisin one day. As he won't eat chocolate or raisins, I figured he'd take one bite and then spit it in the floor, but I was gladly wrong. He loved it and asked repeatedly for more. I wouldn't be surprised at all if 1/3 of his calories that day came from Raisinettes. Towards the end of the night he started spitting out the raisin skins, but he was still sucking down the chocolate which was fine with me. At this point, calories are calories, no matter the source.
Today he demanded a bit of my lunch which was a fairly spicy seafood pasta. I offered a noodle and he barely contained a shiver of disgust. But when I gave him a bit of a scallop he was in heaven. Becky finds it hysterical than he won't touch a Hershey Kiss but he demands shellfish. What can I say? He's a savory kid.
We also learned a lot about his preferences. During the 2 days when he was drinking well(ish), he made it very clear that he did not like the vanilla carnation instant breakfast or the chocolate milk I offered. He also turned his nose up at pretty much every juice I offered. He did take a few sips of apple juice but really only if I let him drink it directly from the can. Mostly, he'll take plain milk or water, please.
Today I'm able to focus on the positives. Had I written this on Friday, it would be different. I felt defeated & broken. I had failed him. Those feelings bubbled up again tonight when I started up his feeding pump again for the first time in 9 days. I thought I was okay until I could hear it pumping and I had to fight back to the tears.
It wasn't unlike hearing the breaths from the ventilator machine back in the NICU after he'd failed to tolerate CPAP one more time. It was disappointing and heart breaking and I wonder if I'll ever see the end of it. But it was also almost a relief. If he couldn't do it, thank God for a machine which could. At least I knew he was okay for now.
I'm only giving him water tonight, just 16 ounces. His caloric intake has improved over the last few days, consuming about 75% of his needs by mouth. I don't want to short circuit that. Hopefully his body will continue to recognize that it needs more and he will continue to eat more and more. I'm at least willing to trust him enough with food to let him sort it out for a while longer. But I couldn't continue that with hydration. I worried far too much about his organs to let dehydration continue any longer.
Tomorrow is Robbie's first day at the new childcare center. This adds another layer of anxiety to everything, of course. I have no doubt that he'll love it and they'll love him. Even the average kid has a bit of a learning curve in a new situation and Robbie's far from typical. The new teachers will need to become comfortable with his G-Tube. They won't need to use it, but just the sight of it is upsetting to people who aren't used to it. They will need to learn to feed him. And of course, there are the corn issues. The kids are fed family style there, so there will probably be some growing pains to keep him out of the unsafe food and make sure the he has access to all the safe food we can get into him.
I hope that he'll trust them to feed him right away. I hope that he'll see the other kids eating and drinking and climbing and playing and talking and he'll want to join them. I hope that someday I will be able to trust that he won't let himself starve to death. Today isn't that day. Thankfully tomorrow is a new one.
--Trish
Of course, I'm not starving him on purpose. There is food available to him 24 hours a day. There are usually no less than 3 cups of various liquids available at any time as well. Really, I just spent the week letting him starve himself. It is physically and emotionally draining for both of us.
The first two days, he drank nearly nothing. He ate averagely, and his mood was okay. The third day, I saw some improvement. He drank just under 6oz throughout the day, but that was 6 oz more than he normally would and I felt pretty good about it. Then he backslid again, taking only a few ounces of milk from a syringe the next day; my confidence waned.
The next day brought elation. He drank approximately 15oz all day. I told a few friends that I thought we'd turned the corner. We were done with the tube. While I was supremely excited, I was also fretting. While he interest in food was expanding again, he couldn't keep up with his caloric needs and I could see him wasting away in front of me. His hip bones seemed to taunt me at every diaper change. His ribs lost their ticklish allure with no padding on them. His energy level was pretty decent, his mood was not. But I was still resolute- this was it.
Thursday night I decided that I needed to tube him a little bit of just water. He hadn't had more than 15oz of hydration in any given day all week and I was beginning to worry about his kidneys. I snuck in long after he was asleep and bolused in just 5 oz of plain water. He wouldn't be up for another 9 or 10 hours. He'd be thirsty by then, surely.
Friday was my birthday. Robbie decided 34 was the year for anxiety. He refused to drink nearly all day. By mid-day I was fighting tears. I tried to tell myself that it was just the usual tube-weaning protest. At one point during the week, he'd even found his extension tube and came running towards me with it with an expression that seemed to read "don't worry mommy, I found it, we can go back to this now..." He knew what was happening and didn't like it. I told myself that he was just testing me. But something felt off.
I talked to Becky and fought the urge to cry. She rightly called me on my guilt about the water. She assured me there wasn't a wrong thing to do. She didn't think the water was mistake, but that even if it was, that we'd all made mistakes along the way and nothing is so big that it can't be overcome. They were words I needed to hear and I felt better afterward. I decided to feed him some baby food that afternoon. God knew he needed the calories and the hydration they provided would make me feel better. He drank a few ounces later in the evening, but very little. He ultimately consumed only 3.5 ounces for the entire day.
Saturday was only slightly better, totaling around 5 ounces. Today he might have reached six. He sipped his milk occasionally, showing more interest in water for my glass than any of his (and yes, before you ask, he has his own open cup available as well.) and I was glad to oblige him.
There were successes along the way. Friday, he absolutely insisted on having a chocolate covered raisin one day. As he won't eat chocolate or raisins, I figured he'd take one bite and then spit it in the floor, but I was gladly wrong. He loved it and asked repeatedly for more. I wouldn't be surprised at all if 1/3 of his calories that day came from Raisinettes. Towards the end of the night he started spitting out the raisin skins, but he was still sucking down the chocolate which was fine with me. At this point, calories are calories, no matter the source.
Today he demanded a bit of my lunch which was a fairly spicy seafood pasta. I offered a noodle and he barely contained a shiver of disgust. But when I gave him a bit of a scallop he was in heaven. Becky finds it hysterical than he won't touch a Hershey Kiss but he demands shellfish. What can I say? He's a savory kid.
We also learned a lot about his preferences. During the 2 days when he was drinking well(ish), he made it very clear that he did not like the vanilla carnation instant breakfast or the chocolate milk I offered. He also turned his nose up at pretty much every juice I offered. He did take a few sips of apple juice but really only if I let him drink it directly from the can. Mostly, he'll take plain milk or water, please.
Today I'm able to focus on the positives. Had I written this on Friday, it would be different. I felt defeated & broken. I had failed him. Those feelings bubbled up again tonight when I started up his feeding pump again for the first time in 9 days. I thought I was okay until I could hear it pumping and I had to fight back to the tears.
It wasn't unlike hearing the breaths from the ventilator machine back in the NICU after he'd failed to tolerate CPAP one more time. It was disappointing and heart breaking and I wonder if I'll ever see the end of it. But it was also almost a relief. If he couldn't do it, thank God for a machine which could. At least I knew he was okay for now.
I'm only giving him water tonight, just 16 ounces. His caloric intake has improved over the last few days, consuming about 75% of his needs by mouth. I don't want to short circuit that. Hopefully his body will continue to recognize that it needs more and he will continue to eat more and more. I'm at least willing to trust him enough with food to let him sort it out for a while longer. But I couldn't continue that with hydration. I worried far too much about his organs to let dehydration continue any longer.
Tomorrow is Robbie's first day at the new childcare center. This adds another layer of anxiety to everything, of course. I have no doubt that he'll love it and they'll love him. Even the average kid has a bit of a learning curve in a new situation and Robbie's far from typical. The new teachers will need to become comfortable with his G-Tube. They won't need to use it, but just the sight of it is upsetting to people who aren't used to it. They will need to learn to feed him. And of course, there are the corn issues. The kids are fed family style there, so there will probably be some growing pains to keep him out of the unsafe food and make sure the he has access to all the safe food we can get into him.
I hope that he'll trust them to feed him right away. I hope that he'll see the other kids eating and drinking and climbing and playing and talking and he'll want to join them. I hope that someday I will be able to trust that he won't let himself starve to death. Today isn't that day. Thankfully tomorrow is a new one.
--Trish
Sunday, September 26, 2010
Weekend wrap-up
I'm feeling much, much better. Wednesday was ugly. Thursday was not much better. I was actually pretty surprised how much pain I was in. This was worse than my C section with Robbie. Now, I was very distracted by bigger concerns than physical pain after my C section, so maybe my perspective is off, but really. I could get comfortable in bed after he was born. Sure, coughing or laughing or well... moving.. hurt, but at least there was a point that I could be out of pain. I did not have that on Wednesday or Thursday. Everything hurt all the time.
After Robbie was born, my nurses all seemed to think I was odd because I kept refusing the narcotics. I refused to even take the prescription for them after my knee surgery several years ago. Wednesday afternoon I was laying in bed asking David when I could have more. I really don't think I'm a wimp about pain (that's not to brag on myself. I'm a complete baby when I have a fever. Seriously, I get to 99 and I'm pathetic. But physical pain I can usually handle fine.) but I was a mess.
In hindsight, I really should have made arrangements for Robbie to be somewhere else. David was fairly good about taking care of him, but he would still come in and want "Up!?" and I'd have to say no. David would try to pick him up and Robbie would push him away. You could see the frustration. I didn't ask for Daddy to pick me up. I asked for mommy. Now go away and leave me be! Towards the end of the day, you could tell that David was just out of steam. He'd been traveling for work, arriving home about 1am. We had to be at the hospital at 7:30. Suffice it to say, he wasn't super attentive. We would have all benefited from a good babysitter.
Fortunately by Friday things were improving. This morning was even better. Today was a narcotic free today. My biggest complaint of today is that my largest incision is itching like crazy. I keep reminding myself that means healing, but I daydream about gouging my skin off. I mean, I have Percocet left, why let them go to waste?
In other news, we are attending our first NICU reunion tomorrow. I have no idea what to expect and hope that it goes okay. While I am feeling much better, I'm not sure how long that will last. We went out to dinner tonight and I actually fell asleep on the 20 minute drive home. The pain has improved, but I'm definitely not at 100%. The reunion is also at 1:00 which is squarely in the middle of Robbie's normal nap time. My plan is to go early and not stay too long, but we'll see. I don't really know what to expect. I just really want to see everyone. We've been to the NICU several times, most recently on Robbie's adjusted birthday to take some cupcakes, but it's very hit or miss about catching anyone there, and the unit is now very enclosed with all private rooms, so visiting just isn't easy. Hoping to catch up with some of our saviors and our fellow survivors.
As if that's not all exciting enough, we're trying to tube-wean Robbie again. I put him down tonight and told him "no more tubes. You have to drink like a big boy now." His eating continues to slowly improve, but drinking just eludes us. His diet still consists mainly of crunchables and purees, but it gets the job done. Drinking, however, is completely unreliable. He might pick up a cup and drink an ounce or two of water a few days in a row, but then he won't touch one again for another week or two. He seems to have more interest in an open cup than anything else, but inevitably dumps it too far, chokes himself and then refuses to touch one again for 2 weeks. He loves to stir our drinks with a spoon or a straw and then lick it, but no actual drinking.
The last time we tried, he refused to drink for a day, but then slowly increased. But as soon as I started to top him off a little, he completely stopped again. Had I been calculating his purees into his daily liquid intake, I wouldn't have topped him off, but I didn't know that "counted." So I'm trying again. I'm trying not to make a big deal of it. Pressure only makes things worse and I know that. He's going to lose weight. I know that. But I also know that he CAN do it. I just need to set him up to want to. And pray a lot.
In final news, I cried happy tears this morning. Robbie's been able to say "momma" for a very long time. And if you asked him where mommy was, he could point to or find me. But he's never actually put the two together. This morning we were looking through some pictures, pointing out every one he knows when we came across one with both of us in it. He pointed and said "Ma Ma!"
Screw Percocet. There is no better high than that.
--Trish
After Robbie was born, my nurses all seemed to think I was odd because I kept refusing the narcotics. I refused to even take the prescription for them after my knee surgery several years ago. Wednesday afternoon I was laying in bed asking David when I could have more. I really don't think I'm a wimp about pain (that's not to brag on myself. I'm a complete baby when I have a fever. Seriously, I get to 99 and I'm pathetic. But physical pain I can usually handle fine.) but I was a mess.
In hindsight, I really should have made arrangements for Robbie to be somewhere else. David was fairly good about taking care of him, but he would still come in and want "Up!?" and I'd have to say no. David would try to pick him up and Robbie would push him away. You could see the frustration. I didn't ask for Daddy to pick me up. I asked for mommy. Now go away and leave me be! Towards the end of the day, you could tell that David was just out of steam. He'd been traveling for work, arriving home about 1am. We had to be at the hospital at 7:30. Suffice it to say, he wasn't super attentive. We would have all benefited from a good babysitter.
Fortunately by Friday things were improving. This morning was even better. Today was a narcotic free today. My biggest complaint of today is that my largest incision is itching like crazy. I keep reminding myself that means healing, but I daydream about gouging my skin off. I mean, I have Percocet left, why let them go to waste?
In other news, we are attending our first NICU reunion tomorrow. I have no idea what to expect and hope that it goes okay. While I am feeling much better, I'm not sure how long that will last. We went out to dinner tonight and I actually fell asleep on the 20 minute drive home. The pain has improved, but I'm definitely not at 100%. The reunion is also at 1:00 which is squarely in the middle of Robbie's normal nap time. My plan is to go early and not stay too long, but we'll see. I don't really know what to expect. I just really want to see everyone. We've been to the NICU several times, most recently on Robbie's adjusted birthday to take some cupcakes, but it's very hit or miss about catching anyone there, and the unit is now very enclosed with all private rooms, so visiting just isn't easy. Hoping to catch up with some of our saviors and our fellow survivors.
As if that's not all exciting enough, we're trying to tube-wean Robbie again. I put him down tonight and told him "no more tubes. You have to drink like a big boy now." His eating continues to slowly improve, but drinking just eludes us. His diet still consists mainly of crunchables and purees, but it gets the job done. Drinking, however, is completely unreliable. He might pick up a cup and drink an ounce or two of water a few days in a row, but then he won't touch one again for another week or two. He seems to have more interest in an open cup than anything else, but inevitably dumps it too far, chokes himself and then refuses to touch one again for 2 weeks. He loves to stir our drinks with a spoon or a straw and then lick it, but no actual drinking.
The last time we tried, he refused to drink for a day, but then slowly increased. But as soon as I started to top him off a little, he completely stopped again. Had I been calculating his purees into his daily liquid intake, I wouldn't have topped him off, but I didn't know that "counted." So I'm trying again. I'm trying not to make a big deal of it. Pressure only makes things worse and I know that. He's going to lose weight. I know that. But I also know that he CAN do it. I just need to set him up to want to. And pray a lot.
In final news, I cried happy tears this morning. Robbie's been able to say "momma" for a very long time. And if you asked him where mommy was, he could point to or find me. But he's never actually put the two together. This morning we were looking through some pictures, pointing out every one he knows when we came across one with both of us in it. He pointed and said "Ma Ma!"
Screw Percocet. There is no better high than that.
--Trish
Thursday, September 23, 2010
GB GB
Goodbye gallbladder.
The morning was fine. I barely slept, but nerves kept me awake. I was fitted with some sort of odd paper gown that apparently can be inflated to keep me warm or cool. I didn't play with that feature, but thought it was interesting. I got an IV, BP cuff, some EKG probes, circulation stockings plus those inflatable circulation cuffs. For half a second I expected them to roll in a bag of mag. Not a good flashback. But the nurses were all really great and when my doctor came in, he got on a soap box about capitalism when commenting about the book my husband was reading. If you knew my husband, you'd know how hysterical that was.
The surgery went fine, really. Being me, my anatomy was a little odd and apparently my gallbladder sat up higher than normal and behind my liver in an odd way. So the surgery took about an hour longer than normal. The doctor told my husband he had to "dig around a lot." Yum. He said my duct looked fine (that was unexpected) but that my gallbladder showed thickening indicating long-term dysfunction. He didn't seem to think it was in terrible shape, but definitely wasn't healthy. I was relieved to know that we hadn't done this for nothing.
I had a little trouble keeping my O2 up in recovery- nothing scary, just enough to set off the alarm on the monitor. The nurses woke me several times to tell me to take a deep breath but a few other times I woke when I heard it and tried my best to do it myself. I'm fairly certain I once told it to fuck off. I was tired, cranky, in pain, and frankly, the months I spent listening to it beep at me in the NICU gave me the right. I am kinda of hoping that maybe I didn't say it aloud, though. Either way, it leveled out and I was fine.
The pain was more than I was expecting, honestly. When I first woke up, I kept waiting for a nurse to ask if I was in pain and it seemed like it took ages. I tried to move as much as I could (I couldn't speak yet) to indicate I was awake and one came and ask and I nodded yes immediately. In reality it was probably only a few minutes, but I REALLY hurt. Fortunately whatever she gave me knocked me right back out again.
Eventually they took me back to my room. They gave me some oral pain meds & some pudding & juice. All of the tubes & wires started to really get to me. I wanted to go. I had to keep food down and pee before I could, so I asked David to feed me some pudding (seriously, how do you eat when tubes & wires everywhere?) and asked the nurses to take me to the bathroom. I was pretty wobbly, but got there.
We were on our way home a short while later. I went straight to my bed and haven't left it for long most of the day. David was on Robbie duty, which was sort of hit or miss. Robbie doesn't understand why I can't pick him up and he can only snuggle me halfway. It makes me feel bad, but hopefully I can at least indulge in full body snuggles within a few days.
The pain is coming and going. I definitely know when the paid meds are due. I'm usually fairly noncompliant about pain meds, but not this time. I'm definitely very uncomfortable. Really hoping tomorrow is better. I know it's temporary, so I'm just doing the best I can.
In any case, it was a success. Step one complete. In a week, I'll call my OB for an MFM consult. Let's just hope the most painful part of this process is over.
--Trish
The morning was fine. I barely slept, but nerves kept me awake. I was fitted with some sort of odd paper gown that apparently can be inflated to keep me warm or cool. I didn't play with that feature, but thought it was interesting. I got an IV, BP cuff, some EKG probes, circulation stockings plus those inflatable circulation cuffs. For half a second I expected them to roll in a bag of mag. Not a good flashback. But the nurses were all really great and when my doctor came in, he got on a soap box about capitalism when commenting about the book my husband was reading. If you knew my husband, you'd know how hysterical that was.
The surgery went fine, really. Being me, my anatomy was a little odd and apparently my gallbladder sat up higher than normal and behind my liver in an odd way. So the surgery took about an hour longer than normal. The doctor told my husband he had to "dig around a lot." Yum. He said my duct looked fine (that was unexpected) but that my gallbladder showed thickening indicating long-term dysfunction. He didn't seem to think it was in terrible shape, but definitely wasn't healthy. I was relieved to know that we hadn't done this for nothing.
I had a little trouble keeping my O2 up in recovery- nothing scary, just enough to set off the alarm on the monitor. The nurses woke me several times to tell me to take a deep breath but a few other times I woke when I heard it and tried my best to do it myself. I'm fairly certain I once told it to fuck off. I was tired, cranky, in pain, and frankly, the months I spent listening to it beep at me in the NICU gave me the right. I am kinda of hoping that maybe I didn't say it aloud, though. Either way, it leveled out and I was fine.
The pain was more than I was expecting, honestly. When I first woke up, I kept waiting for a nurse to ask if I was in pain and it seemed like it took ages. I tried to move as much as I could (I couldn't speak yet) to indicate I was awake and one came and ask and I nodded yes immediately. In reality it was probably only a few minutes, but I REALLY hurt. Fortunately whatever she gave me knocked me right back out again.
Eventually they took me back to my room. They gave me some oral pain meds & some pudding & juice. All of the tubes & wires started to really get to me. I wanted to go. I had to keep food down and pee before I could, so I asked David to feed me some pudding (seriously, how do you eat when tubes & wires everywhere?) and asked the nurses to take me to the bathroom. I was pretty wobbly, but got there.
We were on our way home a short while later. I went straight to my bed and haven't left it for long most of the day. David was on Robbie duty, which was sort of hit or miss. Robbie doesn't understand why I can't pick him up and he can only snuggle me halfway. It makes me feel bad, but hopefully I can at least indulge in full body snuggles within a few days.
The pain is coming and going. I definitely know when the paid meds are due. I'm usually fairly noncompliant about pain meds, but not this time. I'm definitely very uncomfortable. Really hoping tomorrow is better. I know it's temporary, so I'm just doing the best I can.
In any case, it was a success. Step one complete. In a week, I'll call my OB for an MFM consult. Let's just hope the most painful part of this process is over.
--Trish
Tuesday, September 21, 2010
Tick tick tick
My gallbladder has 14(ish) hours to live.
Surgery is scheduled for 9:30 tomorrow morning. We are to report to the hospital at 7:30. My poor husband is traveling for work and won't be home until probably 1am. It's going to be a long day for him.
I'm a little nervous, mostly about anesthesia. I hate being knocked out. There was the ugly incident after miscarriage #2 where my brain woke up by my body didn't, and several times I've had some sort of odd muscle reaction to the drugs (essentially leaving me feeling like I've fallen down a flight of stairs) and then there is just the yucky out-of-control feeling while I struggle to wake up. I just hate it.
Of course, being me, I also imagine every horrible scenario that could be. What if I die on the table and leave Robbie without a mother? Oh yes, I've thought about that a half dozen times over the last few days. I love my brain, truly.
Realistically, I'll be fine. Probably sore for a few days. David will be home Wednesday & Thursday and my dad is coming on Friday. Hopefully by then I'll be moving around okay. I'm not technically supposed to lift over 20 pounds for a month but even the surgeon didn't pretend that was possible. Robbie's small, but not that small. (He's right around 25 pounds, for the record.)
Hopefully being cared for by men will be okay. David's actually usually really a good nurse, but I do worry that he will need a lot of prompting for what to do with Robbie all day and I will lost my patience. He's notorious for doing thing like saying he'll get up with Robbie on a Saturday, but what he really does is get up and bring Robbie to bed with me. Thanks, hon.
But we'll see.
The doc said we'll know in a few weeks if I'm going to be very sick afterward. If I'm not really sick, we can start TTC any time. If I am, I'll need a couple of months to let my body adjust. Either way, a week after the surgery, I'll call my OB and get the MFM referral.
This is really happening. Let the anxiety begin.
--Trish
Surgery is scheduled for 9:30 tomorrow morning. We are to report to the hospital at 7:30. My poor husband is traveling for work and won't be home until probably 1am. It's going to be a long day for him.
I'm a little nervous, mostly about anesthesia. I hate being knocked out. There was the ugly incident after miscarriage #2 where my brain woke up by my body didn't, and several times I've had some sort of odd muscle reaction to the drugs (essentially leaving me feeling like I've fallen down a flight of stairs) and then there is just the yucky out-of-control feeling while I struggle to wake up. I just hate it.
Of course, being me, I also imagine every horrible scenario that could be. What if I die on the table and leave Robbie without a mother? Oh yes, I've thought about that a half dozen times over the last few days. I love my brain, truly.
Realistically, I'll be fine. Probably sore for a few days. David will be home Wednesday & Thursday and my dad is coming on Friday. Hopefully by then I'll be moving around okay. I'm not technically supposed to lift over 20 pounds for a month but even the surgeon didn't pretend that was possible. Robbie's small, but not that small. (He's right around 25 pounds, for the record.)
Hopefully being cared for by men will be okay. David's actually usually really a good nurse, but I do worry that he will need a lot of prompting for what to do with Robbie all day and I will lost my patience. He's notorious for doing thing like saying he'll get up with Robbie on a Saturday, but what he really does is get up and bring Robbie to bed with me. Thanks, hon.
But we'll see.
The doc said we'll know in a few weeks if I'm going to be very sick afterward. If I'm not really sick, we can start TTC any time. If I am, I'll need a couple of months to let my body adjust. Either way, a week after the surgery, I'll call my OB and get the MFM referral.
This is really happening. Let the anxiety begin.
--Trish
Monday, September 13, 2010
Soft
My dad LOVES scary movies. LOVES them. Ya know how most parents try to avoid giving their kids nightmares?
Not my dad. He thought it was hysterical to freak me out. Bonus points if I physically reacted by jumping or screaming.
I remember being about 7 and watch Hitchcock's "The Birds" with him. Maybe I was 6. Suffice it to say I was way too young to be watching anything Hitchcock. I only remember a few tidbits from the movie (and an underlying fear of flocks of birds) but I recall clearly a scene where a character had been pecked to death by the birds. I turned my head away at the gore. My dad said "okay, it's over." I looked back up to find that he'd paused it on that scene. Thanks Dad.
He just loves to be scared and to scare people. He's the guy running his fingers up your spine if you're watching something about spiders, or grabbing your leg during a scene looking for a monster in a closet. I learned at a very early age to never outwardly show fear. If he knew he could get you, it only made it worse. You better internalize that shit or he'll torture you for the rest of your life.
This has come in handy a time or two in my adult life. Once, I managed to hit a yellow jacket's nest with my weed eater and got swarmed. Scared the shit out of me, but my reaction was to freeze and then back away slowly. The exterminator who came to take care of the problem was amazed that I escaped being stung. Not freaking out and running away had probably saved me.
The building in which I work is very old. It's like something out of a horror film. Lots of winding, blind hallways, low lights and unmarked doors. There are 5 floors but 2 are completely uninhabited; another nearly so. Plus it's in the heart of the ghetto. Everyone swears it's haunted. It is definitely creepy.
A few years ago I was working 2nd shift and had lingered chatting with a coworker who was on 3rds. She had to walk out to get something from her car, so I walked her out. Then I remembered something at my desk, so I ended up walking her back in. As we came around one of the blind corners, another coworker who might be my father's long-lost (other) daughter jumped out and growled at us. The girl I had been walking with screamed bloody murder. I froze. The coworker with the sick sense of humor howled in laughter. Later, she retold the story to the rest of the office, in part, "...but Trish, she didn't react at all. She must have nerves of steel!" Little does she know she took 5 years off my life that night.
I say of all this to say that I used to be tough. I was a single girl living alone for 10 years. I could watch or read anything all while laying alone in the dark at home. There were exceptions, of course. But they were few and far between. King, Koontz, John Carpenter were staples in my home.
Shortly before Robbie was born, I was on a Dean Koontz kick and had a few books already stocked up to read. When Robbie was a few weeks old, I took one of them up to the NICU to read while I pumped. I got about 7 pages into it before I felt like I was going to have an anxiety attack. Okay, maybe that wasn't the time. My stress levels were already unusually high. That makes sense.
But it hasn't changed. I still haven't read that Koontz novel. I still like a good suspense novel. The latest vampire craze is right up my alley. But those are all far enough removed from reality that I can remove myself from them. Vampires never attack fat girls. But anything that theoretically could happen? I'm out.
Tonight I watched an older movie, "The Gift." The movie was actually pretty decent. I was surprised at the cast. Keanu plays a surprisingly convincing asshole. A few minutes into it I felt tense. By the climax of the movie, I was ready to throw up. Thankfully David was home and had come to lay with me by then. Otherwise I don't think I'd have been able to finish it.
I'm working a day shift tomorrow so that I can make my surgeon's appointment where I hope we can schedule removing my gallbladder. Robbie hasn't slept well all weekend. But instead of sleeping, (now at 1 a.m.) I'm up watching something lighthearted on TV so that I don't go to bed dreaming about decomposing bodies or Katie Holmes's bare breasts.*
I can't decide if this is a good thing or a bad thing, really. Robbie's birth and subsequent life has changed me in many ways, most of them for the better. I'm more empathetic and patient. I'm a better friend. I never travel anywhere without a snack and hand wipes. My left bicep has doubled in size.
But there are some ways that I don't know how to rate; they could go either way. I can tune out the sound of shrieking in a restaurant. I don't think I've left the house without either food, snot or vomit somewhere on my person in more than 2 years. I cry over any story that involves any child anywhere, ever. And apparently I can no longer enjoy a good, bloody horror flick.
Tuning out shrieks is handy when they are coming from a table other than my own, but not appreciated by the tables around us if they're coming from ours. Sometimes I'd like to look put together, but it's also a relief to release some of my OCD tendencies. Empathy is great except when I'm trying to hold it together while driving or working. And exposure to less violence is probably desirable but it's hard to eliminate the main genre of entertainment I enjoyed before Robbie.
All I really know for sure is that I'm really glad I don't live with my dad anymore. It makes it a lot easier to hide the fact that I've gone soft.
--Trish
*My apologies to anyone googling for Katie Holmes's boobs who landed here instead.
Not my dad. He thought it was hysterical to freak me out. Bonus points if I physically reacted by jumping or screaming.
I remember being about 7 and watch Hitchcock's "The Birds" with him. Maybe I was 6. Suffice it to say I was way too young to be watching anything Hitchcock. I only remember a few tidbits from the movie (and an underlying fear of flocks of birds) but I recall clearly a scene where a character had been pecked to death by the birds. I turned my head away at the gore. My dad said "okay, it's over." I looked back up to find that he'd paused it on that scene. Thanks Dad.
He just loves to be scared and to scare people. He's the guy running his fingers up your spine if you're watching something about spiders, or grabbing your leg during a scene looking for a monster in a closet. I learned at a very early age to never outwardly show fear. If he knew he could get you, it only made it worse. You better internalize that shit or he'll torture you for the rest of your life.
This has come in handy a time or two in my adult life. Once, I managed to hit a yellow jacket's nest with my weed eater and got swarmed. Scared the shit out of me, but my reaction was to freeze and then back away slowly. The exterminator who came to take care of the problem was amazed that I escaped being stung. Not freaking out and running away had probably saved me.
The building in which I work is very old. It's like something out of a horror film. Lots of winding, blind hallways, low lights and unmarked doors. There are 5 floors but 2 are completely uninhabited; another nearly so. Plus it's in the heart of the ghetto. Everyone swears it's haunted. It is definitely creepy.
A few years ago I was working 2nd shift and had lingered chatting with a coworker who was on 3rds. She had to walk out to get something from her car, so I walked her out. Then I remembered something at my desk, so I ended up walking her back in. As we came around one of the blind corners, another coworker who might be my father's long-lost (other) daughter jumped out and growled at us. The girl I had been walking with screamed bloody murder. I froze. The coworker with the sick sense of humor howled in laughter. Later, she retold the story to the rest of the office, in part, "...but Trish, she didn't react at all. She must have nerves of steel!" Little does she know she took 5 years off my life that night.
I say of all this to say that I used to be tough. I was a single girl living alone for 10 years. I could watch or read anything all while laying alone in the dark at home. There were exceptions, of course. But they were few and far between. King, Koontz, John Carpenter were staples in my home.
Shortly before Robbie was born, I was on a Dean Koontz kick and had a few books already stocked up to read. When Robbie was a few weeks old, I took one of them up to the NICU to read while I pumped. I got about 7 pages into it before I felt like I was going to have an anxiety attack. Okay, maybe that wasn't the time. My stress levels were already unusually high. That makes sense.
But it hasn't changed. I still haven't read that Koontz novel. I still like a good suspense novel. The latest vampire craze is right up my alley. But those are all far enough removed from reality that I can remove myself from them. Vampires never attack fat girls. But anything that theoretically could happen? I'm out.
Tonight I watched an older movie, "The Gift." The movie was actually pretty decent. I was surprised at the cast. Keanu plays a surprisingly convincing asshole. A few minutes into it I felt tense. By the climax of the movie, I was ready to throw up. Thankfully David was home and had come to lay with me by then. Otherwise I don't think I'd have been able to finish it.
I'm working a day shift tomorrow so that I can make my surgeon's appointment where I hope we can schedule removing my gallbladder. Robbie hasn't slept well all weekend. But instead of sleeping, (now at 1 a.m.) I'm up watching something lighthearted on TV so that I don't go to bed dreaming about decomposing bodies or Katie Holmes's bare breasts.*
I can't decide if this is a good thing or a bad thing, really. Robbie's birth and subsequent life has changed me in many ways, most of them for the better. I'm more empathetic and patient. I'm a better friend. I never travel anywhere without a snack and hand wipes. My left bicep has doubled in size.
But there are some ways that I don't know how to rate; they could go either way. I can tune out the sound of shrieking in a restaurant. I don't think I've left the house without either food, snot or vomit somewhere on my person in more than 2 years. I cry over any story that involves any child anywhere, ever. And apparently I can no longer enjoy a good, bloody horror flick.
Tuning out shrieks is handy when they are coming from a table other than my own, but not appreciated by the tables around us if they're coming from ours. Sometimes I'd like to look put together, but it's also a relief to release some of my OCD tendencies. Empathy is great except when I'm trying to hold it together while driving or working. And exposure to less violence is probably desirable but it's hard to eliminate the main genre of entertainment I enjoyed before Robbie.
All I really know for sure is that I'm really glad I don't live with my dad anymore. It makes it a lot easier to hide the fact that I've gone soft.
--Trish
*My apologies to anyone googling for Katie Holmes's boobs who landed here instead.
Friday, September 10, 2010
Adventure
We want another baby. Not in the "oh, maybe one day.." kind of way but in a very real "let's call the doctors" kind of way.
The day Robbie was born, before I'd even really seen him yet, my mother in law made a comment about "when [we] have a little sister for Robbie.." and if I hadn't been too drugged to focus my eyes, I think I'd have gotten up and slugged her. A few months later, I was gathering up some old books to sell or donate and put all my baby books in the box. I casually said to David, "We're done, right?" He wouldn't agree. He asked me to put them in storage so we could discuss it later.
It would be a long time before I'd admit that he'd been right. Robbie's first year was overwhelming. Most babies are hard work, but of course, Robbie came with unusual challenges. Not only was I unsure if I wanted another, or could handle another, I wasn't sure it was fair to Robbie. He required so much time and attention, was it fair to him to divide my attention. Certainly it wouldn't be fair to another child.
But as Robbie's health and development began to evolve, I began to breathe again. Instead of just surviving, we were all starting to thrive. Man, it felt good. It feels good.
I can genuinely say that I feel fulfilled. Yes, there are bad days, there are still nights I lay awake and worry. Worrying is just what I do. But I see Robbie smile and play and realize that he's a happy, secure kid. I seem to be doing okay with this mom thing. I'm not the perfect one, but I'm doing okay. As fulfilled as I feel, though, I don't feel like our family is complete.
Today, I visited my OB for my annual exam. I was nervous discussing it with her. I felt sick last night wondering if we were insane. The media and interwebz are filled with opinions about the Duggars having another baby after pre-e. Lots of words like "selfish" and "deluded." They sting me a little every time I read them. Are we selfish and deluded? I steeled myself for disapproval. What I found was unadulterated excitement.
I was genuinely surprised. Both my OB and her PA were like my best girlfriends, excited at the prospect of a new baby to play with. My doctor grinned and said she was thinking "we need a girl this time." It was hard not to be caught up in their excitement. Of course, I had a lot of questions and I left with a plan.
First, my gallbladder has to come out. I've been trying to convince my surgeon of that fact for several weeks. Everyone seems to agree that it isn't quite right, but it's not quite wrong enough to be absolutely evicted. If we weren't planning another pregnancy, he wouldn't take it out. Since we are, he asked for more tests (which I've done) and been thinking about it. My OB absolutely says it needs to go. If it acts up at all during pregnancy (which is very likely. It started getting cranky while I was pregnant with Robbie.) it will drive my liver enzymes up and as I had HELLP, the last thing my liver needs is greater stress. She told me to have the surgeon call her if he had questions. She wants it gone.
In the mean time, I am starting Metformin again. Anyone who has ever taken it knows how much fun it is. But it serves a good purpose, so we'll give it another go. I'm supposed to get myself as healthy as I can. Since Robbie's birth, my blood pressure has been just a little above normal (usually 130/80) but okay. But it has a tendency to spike up, sometimes very high, during any sort of stress. I need to work on that. More exercise & less sodium and hopefully some weight loss.
I've been trying to lose weight for the last year. I was down 20 pounds, but since I've been working 2nd shift, it's all been out the window and I've gained again. I'm frustrated and disappointed in myself, but will work to lose as much as I can before we can try again.
Once my gallbladder is out, I'm to let her know. During my recover time (2 months. They want the worst of the effects of the gallbladder removal to pass) I will have a consult with a MFM. And then we'll see the RE. I'm guessing December, January at the latest.
The notion of more fertility treatments isn't exactly exciting. I haven't missed Clomid hot flashes or dates with the dildocam at all. But I also know what to expect. There will be changes this time, of course. We'll try to avoid taking Robbie to the fertility clinic. No one likes a baby in the waiting room there. But it might happen. There will be survivor's guilt, I'm sure.
And there is the possibility that our magic cocktail of Clomid/IUI won't work this time. I dread the cycling and just thinking about another 2ww makes me want to throw up.
But it's not even the trying that stresses me out the most. It's the BEING pregnant again. Worrying about another miscarriage or another premature birth, that makes me tremble.
We took some cupcakes to the NICU last week in celebration of the 2nd anniversary of Robbie's discharge. We talked to a few nurses. I told them we were thinking of trying again and we shared the sentiment that we not need to see each other.
My OB's goal is 36 weeks. I won't be allowed to go past 37 because of my vertical c-section. It makes me sad because I know all too well that even 36-37 weekers can have issues with jaundice, temperature control and feeding. God help me, I need a good eater next time. And I told my OB today that I want to take my baby home with me this time. No more living in a hospital. She thought that was fair. She doesn't think I'll need Lovenex, but will take Folguard and baby aspirin and be heavily monitored. Let's just hope that's enough to get me my take home baby.
So, we embark on a new adventure. Prayers welcome.
“The person who risks nothing, does nothing, has nothing, is nothing, and becomes nothing. He may avoid suffering and sorrow, but he simply cannot learn and feel and change and grow and love and live.”
Leo F. Buscaglia
--Trish
The day Robbie was born, before I'd even really seen him yet, my mother in law made a comment about "when [we] have a little sister for Robbie.." and if I hadn't been too drugged to focus my eyes, I think I'd have gotten up and slugged her. A few months later, I was gathering up some old books to sell or donate and put all my baby books in the box. I casually said to David, "We're done, right?" He wouldn't agree. He asked me to put them in storage so we could discuss it later.
It would be a long time before I'd admit that he'd been right. Robbie's first year was overwhelming. Most babies are hard work, but of course, Robbie came with unusual challenges. Not only was I unsure if I wanted another, or could handle another, I wasn't sure it was fair to Robbie. He required so much time and attention, was it fair to him to divide my attention. Certainly it wouldn't be fair to another child.
But as Robbie's health and development began to evolve, I began to breathe again. Instead of just surviving, we were all starting to thrive. Man, it felt good. It feels good.
I can genuinely say that I feel fulfilled. Yes, there are bad days, there are still nights I lay awake and worry. Worrying is just what I do. But I see Robbie smile and play and realize that he's a happy, secure kid. I seem to be doing okay with this mom thing. I'm not the perfect one, but I'm doing okay. As fulfilled as I feel, though, I don't feel like our family is complete.
Today, I visited my OB for my annual exam. I was nervous discussing it with her. I felt sick last night wondering if we were insane. The media and interwebz are filled with opinions about the Duggars having another baby after pre-e. Lots of words like "selfish" and "deluded." They sting me a little every time I read them. Are we selfish and deluded? I steeled myself for disapproval. What I found was unadulterated excitement.
I was genuinely surprised. Both my OB and her PA were like my best girlfriends, excited at the prospect of a new baby to play with. My doctor grinned and said she was thinking "we need a girl this time." It was hard not to be caught up in their excitement. Of course, I had a lot of questions and I left with a plan.
First, my gallbladder has to come out. I've been trying to convince my surgeon of that fact for several weeks. Everyone seems to agree that it isn't quite right, but it's not quite wrong enough to be absolutely evicted. If we weren't planning another pregnancy, he wouldn't take it out. Since we are, he asked for more tests (which I've done) and been thinking about it. My OB absolutely says it needs to go. If it acts up at all during pregnancy (which is very likely. It started getting cranky while I was pregnant with Robbie.) it will drive my liver enzymes up and as I had HELLP, the last thing my liver needs is greater stress. She told me to have the surgeon call her if he had questions. She wants it gone.
In the mean time, I am starting Metformin again. Anyone who has ever taken it knows how much fun it is. But it serves a good purpose, so we'll give it another go. I'm supposed to get myself as healthy as I can. Since Robbie's birth, my blood pressure has been just a little above normal (usually 130/80) but okay. But it has a tendency to spike up, sometimes very high, during any sort of stress. I need to work on that. More exercise & less sodium and hopefully some weight loss.
I've been trying to lose weight for the last year. I was down 20 pounds, but since I've been working 2nd shift, it's all been out the window and I've gained again. I'm frustrated and disappointed in myself, but will work to lose as much as I can before we can try again.
Once my gallbladder is out, I'm to let her know. During my recover time (2 months. They want the worst of the effects of the gallbladder removal to pass) I will have a consult with a MFM. And then we'll see the RE. I'm guessing December, January at the latest.
The notion of more fertility treatments isn't exactly exciting. I haven't missed Clomid hot flashes or dates with the dildocam at all. But I also know what to expect. There will be changes this time, of course. We'll try to avoid taking Robbie to the fertility clinic. No one likes a baby in the waiting room there. But it might happen. There will be survivor's guilt, I'm sure.
And there is the possibility that our magic cocktail of Clomid/IUI won't work this time. I dread the cycling and just thinking about another 2ww makes me want to throw up.
But it's not even the trying that stresses me out the most. It's the BEING pregnant again. Worrying about another miscarriage or another premature birth, that makes me tremble.
We took some cupcakes to the NICU last week in celebration of the 2nd anniversary of Robbie's discharge. We talked to a few nurses. I told them we were thinking of trying again and we shared the sentiment that we not need to see each other.
My OB's goal is 36 weeks. I won't be allowed to go past 37 because of my vertical c-section. It makes me sad because I know all too well that even 36-37 weekers can have issues with jaundice, temperature control and feeding. God help me, I need a good eater next time. And I told my OB today that I want to take my baby home with me this time. No more living in a hospital. She thought that was fair. She doesn't think I'll need Lovenex, but will take Folguard and baby aspirin and be heavily monitored. Let's just hope that's enough to get me my take home baby.
So, we embark on a new adventure. Prayers welcome.
“The person who risks nothing, does nothing, has nothing, is nothing, and becomes nothing. He may avoid suffering and sorrow, but he simply cannot learn and feel and change and grow and love and live.”
Leo F. Buscaglia
--Trish
Tuesday, August 31, 2010
Feeding update
Thanks to everyone for the suggestions on corn-free foods.
I spent a while at Whole Foods last weekend with some (expensive) results. I didn't find anything in the cereal aisle, but I did find potato crusted fish sticks, corn free breaded chicken nuggets, a number of different kinds of crackers & chips, some sweet potato fries and a few other odds and ends.
So far, he doesn't like the fish sticks (frankly, neither do I. Blech.) but is sort of okay with the chicken nuggets. He liked the sweet potato fries up until a point. They have pepper on them, which isn't too hot.. until about 5 minutes later. He freaked out. There was clutching at his tongue, drooling and frantic whining. Way to go, mom.That's just how to get your kid to like food. Unfortunately they only had 2 options, and the other was jalapeno. So much for that. I'll try to make my own next time.
At Maureen's suggestion, I checked out the chocolate chex. That is probably our biggest win. He loves them. He ate 1/2 cup of them yesterday. That's about 85 calories, and they are fortified with a number of vitamins & minerals. He liked one of the kinds of pita chips and I was impressed he was able to eat a whole one one day. They're large and very difficult to crunch through.
He has definitely improved his eating again, though. He even let me feed him some purees on Saturday. It had been nearly 3 weeks. I was so nervous that my hands were shaking, but he did great. He ate about 6.5 ounces with little protest.
I've also been working with him on self feeding with a spoon. It's very challenging since he doesn't really WANT to eat stuff, and then if I can talk him into it, he's not great at it. My method of choice has been to just put a very small container of yogurt and a spoon on his little table and let him make a mess. He likes to stir and sometimes will sort of lick the spoon. Mostly he drags it all over the house making a mess. The cats are happy, I'll say that much. That's a morning activity, only, though. David doesn't seem to have the patience for the mess.
Mostly it's just been nice to see him enjoying food again. Still no real luck with drinking. I found some corn syrup free chocolate syrup (nestle nesquick for anyone interested) to flavor some milk with, but he won't even try it. Drinking is so intermittent that it's hard to catch the right mood. He won't drink a drop for weeks at a time, then will pick up a cup and drink an ounce or two of water out of nowhere. I can't leave milk out all the time, so I can't have it available 100% of the time. And if he's expecting water and gets milk, he is unhappy! But one of the days, we'll get him to try it and he'll be happy.
He had an evaluation by his new OT today. She seemed nice enough. I made it clear what my concerns are (feeding & drinking, and decreased water phobia) and what they aren't. She seemed okay with that. I didn't get a formal report, but we'll go through the whole thing at his next IFSP next week. She did comment several times that his fine motor skills were quite good, as were his oral-motor skills (she seemed surprised. I don't know why people never believe me when I tell them that.) so we'll see what she says as far as therapy recommendations.
My hope is that at the IFSP we can go to just three therapies per week (down for 4 every week, 5 some) and to combine either OT or speech with feeding therapy on the same day so that we're not tied to the house almost every day. I'm really hoping that she'll agree to OT twice/month, not even every week. We'll see what they say and what kind of scheduling we can work out.
I'm just not really convinced that any of the therapies are working great except maybe speech and I'm finding myself more and more resentful of the time factor. I'd like to be able to have play-dates and park visits, but instead we're stuck at home for therapy appointments all the time.
He'll be starting a new daycare on Sept 27 and be with other children closer to his age (there is only 1 his age at daycare now) and I think that will help a lot with his development as well.
Really, I have great hopes for the next 6 months. I just need to be patient and let them come. It's easy to say, but a lot harder to live. I'm trying very hard to focus on the big picture, but sometimes it's hard to see much beyond having a spoon thrown at you or the fact that he still doesn't call me momma. I'm a worrier by nature, but Robbie has certainly proven to me that he is far more capable than I always give him credit for. I need to trust him...and God.
Trish
I spent a while at Whole Foods last weekend with some (expensive) results. I didn't find anything in the cereal aisle, but I did find potato crusted fish sticks, corn free breaded chicken nuggets, a number of different kinds of crackers & chips, some sweet potato fries and a few other odds and ends.
So far, he doesn't like the fish sticks (frankly, neither do I. Blech.) but is sort of okay with the chicken nuggets. He liked the sweet potato fries up until a point. They have pepper on them, which isn't too hot.. until about 5 minutes later. He freaked out. There was clutching at his tongue, drooling and frantic whining. Way to go, mom.That's just how to get your kid to like food. Unfortunately they only had 2 options, and the other was jalapeno. So much for that. I'll try to make my own next time.
At Maureen's suggestion, I checked out the chocolate chex. That is probably our biggest win. He loves them. He ate 1/2 cup of them yesterday. That's about 85 calories, and they are fortified with a number of vitamins & minerals. He liked one of the kinds of pita chips and I was impressed he was able to eat a whole one one day. They're large and very difficult to crunch through.
He has definitely improved his eating again, though. He even let me feed him some purees on Saturday. It had been nearly 3 weeks. I was so nervous that my hands were shaking, but he did great. He ate about 6.5 ounces with little protest.
I've also been working with him on self feeding with a spoon. It's very challenging since he doesn't really WANT to eat stuff, and then if I can talk him into it, he's not great at it. My method of choice has been to just put a very small container of yogurt and a spoon on his little table and let him make a mess. He likes to stir and sometimes will sort of lick the spoon. Mostly he drags it all over the house making a mess. The cats are happy, I'll say that much. That's a morning activity, only, though. David doesn't seem to have the patience for the mess.
Mostly it's just been nice to see him enjoying food again. Still no real luck with drinking. I found some corn syrup free chocolate syrup (nestle nesquick for anyone interested) to flavor some milk with, but he won't even try it. Drinking is so intermittent that it's hard to catch the right mood. He won't drink a drop for weeks at a time, then will pick up a cup and drink an ounce or two of water out of nowhere. I can't leave milk out all the time, so I can't have it available 100% of the time. And if he's expecting water and gets milk, he is unhappy! But one of the days, we'll get him to try it and he'll be happy.
He had an evaluation by his new OT today. She seemed nice enough. I made it clear what my concerns are (feeding & drinking, and decreased water phobia) and what they aren't. She seemed okay with that. I didn't get a formal report, but we'll go through the whole thing at his next IFSP next week. She did comment several times that his fine motor skills were quite good, as were his oral-motor skills (she seemed surprised. I don't know why people never believe me when I tell them that.) so we'll see what she says as far as therapy recommendations.
My hope is that at the IFSP we can go to just three therapies per week (down for 4 every week, 5 some) and to combine either OT or speech with feeding therapy on the same day so that we're not tied to the house almost every day. I'm really hoping that she'll agree to OT twice/month, not even every week. We'll see what they say and what kind of scheduling we can work out.
I'm just not really convinced that any of the therapies are working great except maybe speech and I'm finding myself more and more resentful of the time factor. I'd like to be able to have play-dates and park visits, but instead we're stuck at home for therapy appointments all the time.
He'll be starting a new daycare on Sept 27 and be with other children closer to his age (there is only 1 his age at daycare now) and I think that will help a lot with his development as well.
Really, I have great hopes for the next 6 months. I just need to be patient and let them come. It's easy to say, but a lot harder to live. I'm trying very hard to focus on the big picture, but sometimes it's hard to see much beyond having a spoon thrown at you or the fact that he still doesn't call me momma. I'm a worrier by nature, but Robbie has certainly proven to me that he is far more capable than I always give him credit for. I need to trust him...and God.
Trish
Monday, August 23, 2010
In it to win it
It's been a long week.
Really, it started last week and just continued into this one. Robbie got a cold in the middle of last week. Of course, thanks his crappy lungs, a cold is never just a cold in our house. Tuesday night he was sniffling, Wednesday he was doing a throat clearing cough. Thursday morning I was debating which ER we needed to go to- the close one or the one at the better hospital in case they admitted him. I ultimately decided to go for the better hospital, but since that's 35 miles away, I'd do a breathing treatment at home first, buying us enough time to get there and get in.
Thankfully, that breathing treatment cleared him right up. I was very surprised, but relieved. He woke up wheezing worse than I've ever heard him, which is saying something. I put in a call to the pediatrician and she added oral steroids to the inhaled steroids & pulmicort that we keep stocked at home. We kept him patched up, but when he developed a low fever on Friday night, we went in on Saturday. The pediatrician on call debated sending him for a chest x-ray to check for pneumonia but decided that despite his considerable wheeze, he was moving enough air to be safe. We did win ourselves an extra dose of oral steroids & an antibiotic, though.
As much as that sucked, it did highlight an interesting fact. This was the first antibiotic he's been on since December. She went back through his chart to see what has worked in the past, and sure enough. it's been 8 months since his last dose. That goes back to his constant ear infections before he got his tubes. My, how things change.
Of course, while this was going on, his eating tanked. I tried to just relax and recognize that even typical eaters don't want to eat when they're sick. Just go with the flow. The hardest part is that he will eat great at daycare, but not at home. We even had a few days of crying before I could get him into the high chair.
On particularly frustrating day, I tried to let him self-feed some yogurt (something he has only done once, but it was worth a try) without success. When it was time to take him to daycare, I packed up the uneaten yogurt and sent it with him. While I was there for the drop off, Katie pulled him into her lap and offered a bite of the yogurt. He immediately opened his mouth to take the bite, looked over at me and promptly clamped his mouth shut. Katie looked stunned. I tried not to cry.
Before I'd driven the 20 minutes to work, Katie called to let me know he'd eaten as soon as I left. I wasn't surprised. It's me. He doesn't want to eat for me. I have no idea what to do about it. We had this 2 week period where he just didn't fight, actually seemed to enjoy eating. That time has clearly ended. Being sick only exacerbated it.
Fortunately, the sickness has waned. His eating improved a bit, though he still won't let me feed him really at all. I've just been focusing on table food, which has it's ups and downs.
I did find some items at Whole Foods to experiment with. He seemed to like a chicken nugget without corn in the breading today. And the sweet potato fries were a big hit. I'm hoping that once this round of antibiotics is done with, he'll improve a bit more. (He's on Augmentin, which is notoriously hard on the stomach and certainly has caused him some digestive issues.)
The combination of fighting lung & feeding issues really had left me feeling a bit defeated. (I'm sure the lack of sleep wasn't helping build a positive disposition.) Prematurity just seemed to be getting the best of us.
Then two things happened. One was small, but brightened my whole Tuesday. Robbie had physical therapy at 11 that morning. I was working slightly earlier hours, so it happened that I was taking Robbie to daycare at the same time. His physical therapist, Jenny, pulled into the driveway at daycare maybe 20 seconds ahead of us.
While Jenny was gathering her stuff in the back of her van, I unloaded Robbie and we started to walk in. Robbie was holding my hand, walking towards the door merrily until he realized we were leaving Jenny behind. He started to whine and pull at my hand. I assured him that Jenny was coming to and to just go in the house. He wouldn't hear of it. I picked him up and carried him in. He was hysterical. As we walked in, both of his caregivers looked shocked. Why was he so upset?
I explained the situation and that Jenny would be in shortly. Robbie was still upset and since he has a cold, that meant not only did he have a stream of tears down his face, but now his nose was running like mad as well. I sat him down so I could get a tissue just as Jenny came in the door.
It was like magic. Instantly, there were no more tears. He actually started to giggle. He ran over to Jenny, staring up at her, clearly overjoyed that his friend was there. We all started chuckling. I casually asked Jenny if she remembered the days that he used to whine when he saw her come in the door. She said she certainly did. She knew he was thinking about all the tummy time to come.
"Yes, what a difference a year makes," I said.
As I drove to work that day, I really was reflecting on the difference in a year. This time last year, Robbie couldn't even roll over. Today I can barely keep up with chasing him. He hasn't had a formal evaluation yet, but Jenny is fairly certain he's going to graduate from PT with his next IFSP meeting on September 9. It's amazing.
Then a few days ago, I was offering some encouragement to a friend who is attempting to tube-wean her daughter. My friend is obviously nervous and skeptical. My heart went out to her. While Robbie isn't completely tube-weaned, I remember clearly the feelings I had before we started to truly work at it. I didn't think it would ever work.
Certainly, we have a long way to go, but when I told her of our experience from our tube-free weekend, I told her that in April, he wasn't drinking anything at all. But that first weekend in May when we went tube-free, he drank as much as 12 ounces one day. I mentioned how far he'd come in the last three months.
It hit me, then. THREE MONTHS. Three months ago, he would drink nothing. He could very, very slowly eat foods which essentially melted in his mouth. He was being tubed 3 times during waking hours.
Now he eats plenty of crunchy snack items and actually chews them. He loves hot dogs and french fries like most American kids. He even occasionally picks up a cup and drinks out of it. He did it this weekend, drinking maybe 2 oz of water two days in a row.
With the exception of a little bit of water for hydration when he was very sick last week, and a little puree out of desperation a few weeks ago, he hasn't been tubed during wake hours since April. That fact alone has changed our lives. We're now free to go out during the day without packing equipment and figuring out how to keep things cold or how to prevent tubing from disconnecting. It's incredibly freeing.
So yes, we are still at war with prematurity. Sometimes it even wins a round or two. It's easy to get lost in the day-to-day battles; how much did he eat today, how is his breathing, will he drink anything, he still isn't really talking. But when I stop and really step back and look around, I'm amazed by how far we've come. A little perspective is amazing. We've come a long way. This is a slow, dirty, tedious war, but we're in it to win it.
--Trish
Really, it started last week and just continued into this one. Robbie got a cold in the middle of last week. Of course, thanks his crappy lungs, a cold is never just a cold in our house. Tuesday night he was sniffling, Wednesday he was doing a throat clearing cough. Thursday morning I was debating which ER we needed to go to- the close one or the one at the better hospital in case they admitted him. I ultimately decided to go for the better hospital, but since that's 35 miles away, I'd do a breathing treatment at home first, buying us enough time to get there and get in.
Thankfully, that breathing treatment cleared him right up. I was very surprised, but relieved. He woke up wheezing worse than I've ever heard him, which is saying something. I put in a call to the pediatrician and she added oral steroids to the inhaled steroids & pulmicort that we keep stocked at home. We kept him patched up, but when he developed a low fever on Friday night, we went in on Saturday. The pediatrician on call debated sending him for a chest x-ray to check for pneumonia but decided that despite his considerable wheeze, he was moving enough air to be safe. We did win ourselves an extra dose of oral steroids & an antibiotic, though.
As much as that sucked, it did highlight an interesting fact. This was the first antibiotic he's been on since December. She went back through his chart to see what has worked in the past, and sure enough. it's been 8 months since his last dose. That goes back to his constant ear infections before he got his tubes. My, how things change.
Of course, while this was going on, his eating tanked. I tried to just relax and recognize that even typical eaters don't want to eat when they're sick. Just go with the flow. The hardest part is that he will eat great at daycare, but not at home. We even had a few days of crying before I could get him into the high chair.
On particularly frustrating day, I tried to let him self-feed some yogurt (something he has only done once, but it was worth a try) without success. When it was time to take him to daycare, I packed up the uneaten yogurt and sent it with him. While I was there for the drop off, Katie pulled him into her lap and offered a bite of the yogurt. He immediately opened his mouth to take the bite, looked over at me and promptly clamped his mouth shut. Katie looked stunned. I tried not to cry.
Before I'd driven the 20 minutes to work, Katie called to let me know he'd eaten as soon as I left. I wasn't surprised. It's me. He doesn't want to eat for me. I have no idea what to do about it. We had this 2 week period where he just didn't fight, actually seemed to enjoy eating. That time has clearly ended. Being sick only exacerbated it.
Fortunately, the sickness has waned. His eating improved a bit, though he still won't let me feed him really at all. I've just been focusing on table food, which has it's ups and downs.
I did find some items at Whole Foods to experiment with. He seemed to like a chicken nugget without corn in the breading today. And the sweet potato fries were a big hit. I'm hoping that once this round of antibiotics is done with, he'll improve a bit more. (He's on Augmentin, which is notoriously hard on the stomach and certainly has caused him some digestive issues.)
The combination of fighting lung & feeding issues really had left me feeling a bit defeated. (I'm sure the lack of sleep wasn't helping build a positive disposition.) Prematurity just seemed to be getting the best of us.
Then two things happened. One was small, but brightened my whole Tuesday. Robbie had physical therapy at 11 that morning. I was working slightly earlier hours, so it happened that I was taking Robbie to daycare at the same time. His physical therapist, Jenny, pulled into the driveway at daycare maybe 20 seconds ahead of us.
While Jenny was gathering her stuff in the back of her van, I unloaded Robbie and we started to walk in. Robbie was holding my hand, walking towards the door merrily until he realized we were leaving Jenny behind. He started to whine and pull at my hand. I assured him that Jenny was coming to and to just go in the house. He wouldn't hear of it. I picked him up and carried him in. He was hysterical. As we walked in, both of his caregivers looked shocked. Why was he so upset?
I explained the situation and that Jenny would be in shortly. Robbie was still upset and since he has a cold, that meant not only did he have a stream of tears down his face, but now his nose was running like mad as well. I sat him down so I could get a tissue just as Jenny came in the door.
It was like magic. Instantly, there were no more tears. He actually started to giggle. He ran over to Jenny, staring up at her, clearly overjoyed that his friend was there. We all started chuckling. I casually asked Jenny if she remembered the days that he used to whine when he saw her come in the door. She said she certainly did. She knew he was thinking about all the tummy time to come.
"Yes, what a difference a year makes," I said.
As I drove to work that day, I really was reflecting on the difference in a year. This time last year, Robbie couldn't even roll over. Today I can barely keep up with chasing him. He hasn't had a formal evaluation yet, but Jenny is fairly certain he's going to graduate from PT with his next IFSP meeting on September 9. It's amazing.
Then a few days ago, I was offering some encouragement to a friend who is attempting to tube-wean her daughter. My friend is obviously nervous and skeptical. My heart went out to her. While Robbie isn't completely tube-weaned, I remember clearly the feelings I had before we started to truly work at it. I didn't think it would ever work.
Certainly, we have a long way to go, but when I told her of our experience from our tube-free weekend, I told her that in April, he wasn't drinking anything at all. But that first weekend in May when we went tube-free, he drank as much as 12 ounces one day. I mentioned how far he'd come in the last three months.
It hit me, then. THREE MONTHS. Three months ago, he would drink nothing. He could very, very slowly eat foods which essentially melted in his mouth. He was being tubed 3 times during waking hours.
Now he eats plenty of crunchy snack items and actually chews them. He loves hot dogs and french fries like most American kids. He even occasionally picks up a cup and drinks out of it. He did it this weekend, drinking maybe 2 oz of water two days in a row.
With the exception of a little bit of water for hydration when he was very sick last week, and a little puree out of desperation a few weeks ago, he hasn't been tubed during wake hours since April. That fact alone has changed our lives. We're now free to go out during the day without packing equipment and figuring out how to keep things cold or how to prevent tubing from disconnecting. It's incredibly freeing.
So yes, we are still at war with prematurity. Sometimes it even wins a round or two. It's easy to get lost in the day-to-day battles; how much did he eat today, how is his breathing, will he drink anything, he still isn't really talking. But when I stop and really step back and look around, I'm amazed by how far we've come. A little perspective is amazing. We've come a long way. This is a slow, dirty, tedious war, but we're in it to win it.
--Trish
Thursday, August 19, 2010
Corn Woes
I freaking hate corn.
Seriously, it is in everything. Robbie still can't eat it. He does get some in small amounts, if it's towards the end of the ingredient list of something he will eat. But I really prefer things without it.
After we finally figured out that corn made him vomit more than a year and a half ago, I've been hoping he'd outgrow it. Several months ago, I tried adding Duocal to his food for extra calories and 9 days into it, he started vomiting blood again. Obviously he hasn't outgrown it.
When he would eat nothing, and then when he would only eat purees, corn was easy to avoid. But lately, he's had more interest in table food. Of course, those table food interests are limited. He still doesn't like anything with a wet texture. His diet isn't terribly unusual for an American toddler. I'd love for him to eat something with a little more nutrition in it, but at this point, I'm still just happy when he puts food in his mouth. So for now, he eats hot dogs, tater tots, pizza rolls, salmon or chicken nuggets, crackers and french fries.
Grocery shopping for me is complicated. I go from box to box, bag to bag, reading ingredients. Almost everything that is breaded contains corn meal, corn flour or corn starch. If it's sweetened, you can almost guarantee it's sweetened with high fructose corn syrup. It's maddening.
There are certainly things I can make at home. I can bread fish and chicken myself, for example. My culinary talents stop short of homemade pizza rolls. I might try my hand at homemade crackers one of these days. But mostly, I just keep looking for corn-free products.
It's frustrating because people, even those who should, don't take it seriously enough. Either they don't realize how rough corn is on Robbie's stomach or they don't realize how prevalent corn is. My dad is an amazing grandfather, truly. He loves Robbie so much and would do anything for him. Tuesday night, David had to work late, so my dad picked Robbie up from daycare. There was some confusion about getting into our house, so my dad took Robbie to his. He stopped and picked up a happy meal along the way. He called to tell me where they were and that he'd gotten Robbie some food. The problem? Chicken McNugget breading contains corn.
It's not just my dad, either. Friday night I called home and David informed me that Robbie was eating a Dorito. Doritos are corn chips. I am constantly feeling like the bad guy saying no, he can't have that.
This morning, Robbie seemed hungry and I wanted to give him something to hold him over until feeding therapy. I decided to try some cheerios. When I went to get some, I noticed David's box of chocolate cheerios and thought Robbie might like those. I had him a couple and he scarfs them down and asks for more. And more. And more. And more.
He probably ate 30 of them before I glanced at the box and realized they're made with corn flour. CURSES! I put the box away, trying to distract Robbie. He starts to cry because he wants them. Murphy's Law of childhood eating disorders: If your child will only eat one thing, it will be the one thing they shouldn't have.
I looked at the box of Honey Nut Cheerios and they're made with wheat flour, but contain corn starch. At least it wasn't the first ingredient, so I gave him a couple of those, hoping to at least minimize the damage. After a few of those, I managed to distract him with some corn-free crackers. I just have to hope the corn he ate doesn't make him sick enough to not eat again for a few days.
Now I guess I'll go try to find a corn-free knock-off version of chocolate Cheerios. Suggestions welcome.
--Trish
Seriously, it is in everything. Robbie still can't eat it. He does get some in small amounts, if it's towards the end of the ingredient list of something he will eat. But I really prefer things without it.
After we finally figured out that corn made him vomit more than a year and a half ago, I've been hoping he'd outgrow it. Several months ago, I tried adding Duocal to his food for extra calories and 9 days into it, he started vomiting blood again. Obviously he hasn't outgrown it.
When he would eat nothing, and then when he would only eat purees, corn was easy to avoid. But lately, he's had more interest in table food. Of course, those table food interests are limited. He still doesn't like anything with a wet texture. His diet isn't terribly unusual for an American toddler. I'd love for him to eat something with a little more nutrition in it, but at this point, I'm still just happy when he puts food in his mouth. So for now, he eats hot dogs, tater tots, pizza rolls, salmon or chicken nuggets, crackers and french fries.
Grocery shopping for me is complicated. I go from box to box, bag to bag, reading ingredients. Almost everything that is breaded contains corn meal, corn flour or corn starch. If it's sweetened, you can almost guarantee it's sweetened with high fructose corn syrup. It's maddening.
There are certainly things I can make at home. I can bread fish and chicken myself, for example. My culinary talents stop short of homemade pizza rolls. I might try my hand at homemade crackers one of these days. But mostly, I just keep looking for corn-free products.
It's frustrating because people, even those who should, don't take it seriously enough. Either they don't realize how rough corn is on Robbie's stomach or they don't realize how prevalent corn is. My dad is an amazing grandfather, truly. He loves Robbie so much and would do anything for him. Tuesday night, David had to work late, so my dad picked Robbie up from daycare. There was some confusion about getting into our house, so my dad took Robbie to his. He stopped and picked up a happy meal along the way. He called to tell me where they were and that he'd gotten Robbie some food. The problem? Chicken McNugget breading contains corn.
It's not just my dad, either. Friday night I called home and David informed me that Robbie was eating a Dorito. Doritos are corn chips. I am constantly feeling like the bad guy saying no, he can't have that.
This morning, Robbie seemed hungry and I wanted to give him something to hold him over until feeding therapy. I decided to try some cheerios. When I went to get some, I noticed David's box of chocolate cheerios and thought Robbie might like those. I had him a couple and he scarfs them down and asks for more. And more. And more. And more.
He probably ate 30 of them before I glanced at the box and realized they're made with corn flour. CURSES! I put the box away, trying to distract Robbie. He starts to cry because he wants them. Murphy's Law of childhood eating disorders: If your child will only eat one thing, it will be the one thing they shouldn't have.
I looked at the box of Honey Nut Cheerios and they're made with wheat flour, but contain corn starch. At least it wasn't the first ingredient, so I gave him a couple of those, hoping to at least minimize the damage. After a few of those, I managed to distract him with some corn-free crackers. I just have to hope the corn he ate doesn't make him sick enough to not eat again for a few days.
Now I guess I'll go try to find a corn-free knock-off version of chocolate Cheerios. Suggestions welcome.
--Trish
Friday, August 6, 2010
Leaks
I have a magic power.
Don't laugh, it's true. I noticed it in high school. Really, my best friend really brought it to my attention later, but by my late teens, I'd certainly noticed the trend. I can make anything leak. Anything.
At first I just thought it was the shit hole trailer I lived in as a teenager. I mean, any day that a wall didn't crumble down around me was a good one there. Being poor was an every day adventure made even more interesting by my unreachable slumlord. The bathroom floor started moving a little, I left messages. It started moving a lot, I left more messages. When it started squishing, I got pretty nervous. People would come over and ask if I'd noticed that there was a leak in my bathroom. No, I thought everyone's bathroom floor had a high tide.
In a few months the landlord came out, declared it a leak from the air conditioner and had it fixed along with the floor. A few weeks later, it started to squish again. A few more months of unreturned calls, they came and declared the same problem. This time the floor wasn't actually sagging, so they left the water stained linoleum in place. I put a rug down.
Eventually, my eighteen year old self would crawl under the trailer (which actually wasn't as horrifying as I had anticipated) took about 13 seconds to find the leaking pipe, wrap some duct tape around it and my floor never squished again. I was annoyed, but empowered.
One day before I left for work, I heard an odd pop followed by what sounded like river rushing nearby. A pipe had burst behind the closet in my bedroom. Several hysterical phone calls later, the water was turned off and I began mopping up gallons of water out of my floor. Bad luck to be sure, but I still thought my misfortune was in living in a shanty.
Several times in a year, my windshield wiper fluid tubing cracked and needed to be replaced. The reservoir which held the windshield fluid leaked, then the oil & antifreeze. I drove an old beater. It was to be expected, right?
Eventually I got a better job and with it a better car and place to live. And then that car's windshield wiper fluid tubing cracked. My landlord was infinitely better and quickly needed to send our ancient handy man out to fix leaking toilets and pipes; to install shiny new faucets. By now I knew I had a problem.
Then I got older, more educated and an even better job. I was ready to buy a home. No way I wanted to buy something with a damp basement. I was still single and though I'd learned a few simple home repairs along the way, I didn't want to need to do them. I had a house built. New meant dry, right?
Four months later, I went to my essentially empty basement to put something in storage and found a puddle in the floor. I called my builder in a tizzy. You have to fix it. They did. I got a pretty new downspout and some new spackle.
One night my best friend was over to visit. I wandered into the kitchen for a drink and I splashed. The sink was leaking. I yelled for her to grab some towels. She started laughing. "I'm so surprised your sink is leaking."
There have been at least a dozen leaking pipes, drains & faucets since then. Tonight I found 3 more (yes, three separate leaks) in my basement plumbing. I didn't even call for David to help. I grabbed the buckets and moved the endangered furniture. I thanked myself for marrying a handy guy.
After I'd minimized the damage, I collapsed in the chair and chuckled. I could hear my best friend's voice in my head, laughing again. I really am magic. Wherever I go, things leak.
As a parent, life is filled with leaks. Diapers, sippy cups, tears; they all leak. Of course, Robbie being my son, that just wasn't enough. Additionally, his stomach leaked through his diaphragm causing his reflux. After his G tube was placed, there were leaks out the sides of that, never mind the frequent accidental disconnections leading to milk-soaked clothes and crib.
Call me superstitious but when I find a recurring theme, I look for the lesson that life, the universe, that God is trying to teach me. I don't know for sure what that is.
For now, I just keep plugging holes and trying to minimize damage whenever I can. Sometimes I can prevent or minimize it. Often I do a lot of mopping. Sometimes I need help and call in reinforcements with buckets.
Maybe the lesson from the hovel of my youth was simply to prepare me for adulthood and parenthood. Things leak, it's okay. It's frustrating and tiring and sometimes you need help. The lesson from my new house was that sometimes new isn't better, just different. You can change your location, but not who you are. In the end, no matter where it is you end up, or how bad things look, they usually end up cleaner & brighter, you just have to work to get there.
--Trish
Don't laugh, it's true. I noticed it in high school. Really, my best friend really brought it to my attention later, but by my late teens, I'd certainly noticed the trend. I can make anything leak. Anything.
At first I just thought it was the shit hole trailer I lived in as a teenager. I mean, any day that a wall didn't crumble down around me was a good one there. Being poor was an every day adventure made even more interesting by my unreachable slumlord. The bathroom floor started moving a little, I left messages. It started moving a lot, I left more messages. When it started squishing, I got pretty nervous. People would come over and ask if I'd noticed that there was a leak in my bathroom. No, I thought everyone's bathroom floor had a high tide.
In a few months the landlord came out, declared it a leak from the air conditioner and had it fixed along with the floor. A few weeks later, it started to squish again. A few more months of unreturned calls, they came and declared the same problem. This time the floor wasn't actually sagging, so they left the water stained linoleum in place. I put a rug down.
Eventually, my eighteen year old self would crawl under the trailer (which actually wasn't as horrifying as I had anticipated) took about 13 seconds to find the leaking pipe, wrap some duct tape around it and my floor never squished again. I was annoyed, but empowered.
One day before I left for work, I heard an odd pop followed by what sounded like river rushing nearby. A pipe had burst behind the closet in my bedroom. Several hysterical phone calls later, the water was turned off and I began mopping up gallons of water out of my floor. Bad luck to be sure, but I still thought my misfortune was in living in a shanty.
Several times in a year, my windshield wiper fluid tubing cracked and needed to be replaced. The reservoir which held the windshield fluid leaked, then the oil & antifreeze. I drove an old beater. It was to be expected, right?
Eventually I got a better job and with it a better car and place to live. And then that car's windshield wiper fluid tubing cracked. My landlord was infinitely better and quickly needed to send our ancient handy man out to fix leaking toilets and pipes; to install shiny new faucets. By now I knew I had a problem.
Then I got older, more educated and an even better job. I was ready to buy a home. No way I wanted to buy something with a damp basement. I was still single and though I'd learned a few simple home repairs along the way, I didn't want to need to do them. I had a house built. New meant dry, right?
Four months later, I went to my essentially empty basement to put something in storage and found a puddle in the floor. I called my builder in a tizzy. You have to fix it. They did. I got a pretty new downspout and some new spackle.
One night my best friend was over to visit. I wandered into the kitchen for a drink and I splashed. The sink was leaking. I yelled for her to grab some towels. She started laughing. "I'm so surprised your sink is leaking."
There have been at least a dozen leaking pipes, drains & faucets since then. Tonight I found 3 more (yes, three separate leaks) in my basement plumbing. I didn't even call for David to help. I grabbed the buckets and moved the endangered furniture. I thanked myself for marrying a handy guy.
After I'd minimized the damage, I collapsed in the chair and chuckled. I could hear my best friend's voice in my head, laughing again. I really am magic. Wherever I go, things leak.
As a parent, life is filled with leaks. Diapers, sippy cups, tears; they all leak. Of course, Robbie being my son, that just wasn't enough. Additionally, his stomach leaked through his diaphragm causing his reflux. After his G tube was placed, there were leaks out the sides of that, never mind the frequent accidental disconnections leading to milk-soaked clothes and crib.
Call me superstitious but when I find a recurring theme, I look for the lesson that life, the universe, that God is trying to teach me. I don't know for sure what that is.
For now, I just keep plugging holes and trying to minimize damage whenever I can. Sometimes I can prevent or minimize it. Often I do a lot of mopping. Sometimes I need help and call in reinforcements with buckets.
Maybe the lesson from the hovel of my youth was simply to prepare me for adulthood and parenthood. Things leak, it's okay. It's frustrating and tiring and sometimes you need help. The lesson from my new house was that sometimes new isn't better, just different. You can change your location, but not who you are. In the end, no matter where it is you end up, or how bad things look, they usually end up cleaner & brighter, you just have to work to get there.
--Trish
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