I fear that the last time I posted with overconfidence on the subject of Ruby getting off of her feeding pump. Everything had been going along fine until we hit 8 oz boluses. We had been increasing the amount by 1 oz per bolus every week and she had NO difficulties. Then we hit 8 and she started projectile vomiting. After a few more attempts it was clear that it was not going to happen so we backed down to 7 oz. But ever since we tried 8 and she vomited, she has been grunting and straining to push the food back out of her stomach and into the syringe which have turned feedings into a complete struggle. So now we are back down to 4 oz boluses...where we started. And she still has some trouble allowing those feeds to go in smoothly :(
All of this has got me down. Really down. I was so happy about her reaching the 8 oz goal. It meant no more feeding pump...EVER. But that is not the case. And worse it seems like we might have ruined the whole bolus feeding experience for good. I'm afraid this has worsened her oral aversion as well. She seems to think it a negative thing when her tummy starts feeling full, which was the exact opposite intention of switching to boluses. She has not been eating much at all these last few weeks. It's been a big deal if we can even get her to taste again. Sadness all around.
I'm really really hoping these changes won't stick and that she'll get back on track with her feedings and with eating soon. It's so hard to see her falter and not know what to do to help her. I'm tired of it. Tired of every meal being a battle. Every feeding a nightmare. I know I should be grateful for the progress she has made and rejoice in things like her being off of the pump during the day, but right now I'm just bummed. It never seems to get any easier even when it does. She is dealing with food so much better than she was this time last year and yet the distance between how she interacts with food versus most other children still feels so very far.
Anyways, I don't have too much time to edit this or finish off in a nice way...just wanted to explain what's been going on lately. Let's hope for better days soon.
Wednesday, January 26, 2011
Thursday, January 13, 2011
Sassy Toddler Syndrome
Last week was rough. Ruby became a toddler last Wednesday...seriously it happened that quickly. Because of her chromosome deletion I'm always on the lookout for behavioral disorders. And as much as I HATE to put her in that box and slap a label on the outside, it's so hard not to. I was so stressed those first couple days. And when stressed I become vulnerable. Susceptible to ideas like, "draw a hard line with your child," "set strict boundaries," "be rigid with discipline." But I know that I am not that mom. That's just not who I am. I am not a screamer. I am not strict. I am quiet...most of the time. And I am flexible. That is how I am going to parent my child.
Ruby is not quite 1 1/2 years old. She is in an odd stage of life. She understands desire, want, and pleasure, but has an extremely limited concept of self-control or patience. She can't even communicate her frustrations and I know she feels limited by her inability to walk and move the way her peers do. All of these things lead to minor behavioral problems. I see very clearly now that they are NOT abnormal behavioral problems. Ruby is simply a toddler.
I know that Dan and I were both demanding children. Actually Dan is still demanding :P We are very emotional, we are very contrary, we are VERY stubborn about certain things and as toddlers I can only imagine how these traits exhibited themselves. Undoubtedly Ruby is like us. She is very determined and insistent, and while these characteristics helped her to survive her first few months in this world they can make for a combative toddler. Thank goodness she is also incredibly affectionate, bright, compassionate, and adorable. :)
I feel renewed and freed by this realization that she is simply growing up. And I know I can handle it, because my mom could handle me, and Dan's mom could handle him--although I have no idea how! But here's how I plan to "handle" Ruby: I will love her. I will acknowledge all of her accomplishments and all of her good behavior. I will not sweat the small stuff or turn our house into a war zone where it's parent vs. child. I will keep things upbeat and positive and transition quickly out of discipline with distraction. And I will have fun with her! Because after all this is a very little person we are talking about. What good does it do to scream at or punish someone who can not understand what is going on. The only thing she will learn from that is to mimic aggressive and negative behavior and that is not who I want my child to be. I think that some people are too quick to use the word spoiled when a kid is merely being a kid. A child is not spoiled because they whine or throw a tantrum or two. They are a CHILD! That doesn't mean I will reward bad behavior or allow Ruby to hit or have everything she wants just because she wants it. It means that I will discipline her the way a 1 1/2 year old should be disciplined--with a whole lot of forgiveness and understanding for what she is going through as a developing human being.
Ruby is not quite 1 1/2 years old. She is in an odd stage of life. She understands desire, want, and pleasure, but has an extremely limited concept of self-control or patience. She can't even communicate her frustrations and I know she feels limited by her inability to walk and move the way her peers do. All of these things lead to minor behavioral problems. I see very clearly now that they are NOT abnormal behavioral problems. Ruby is simply a toddler.
I know that Dan and I were both demanding children. Actually Dan is still demanding :P We are very emotional, we are very contrary, we are VERY stubborn about certain things and as toddlers I can only imagine how these traits exhibited themselves. Undoubtedly Ruby is like us. She is very determined and insistent, and while these characteristics helped her to survive her first few months in this world they can make for a combative toddler. Thank goodness she is also incredibly affectionate, bright, compassionate, and adorable. :)
I feel renewed and freed by this realization that she is simply growing up. And I know I can handle it, because my mom could handle me, and Dan's mom could handle him--although I have no idea how! But here's how I plan to "handle" Ruby: I will love her. I will acknowledge all of her accomplishments and all of her good behavior. I will not sweat the small stuff or turn our house into a war zone where it's parent vs. child. I will keep things upbeat and positive and transition quickly out of discipline with distraction. And I will have fun with her! Because after all this is a very little person we are talking about. What good does it do to scream at or punish someone who can not understand what is going on. The only thing she will learn from that is to mimic aggressive and negative behavior and that is not who I want my child to be. I think that some people are too quick to use the word spoiled when a kid is merely being a kid. A child is not spoiled because they whine or throw a tantrum or two. They are a CHILD! That doesn't mean I will reward bad behavior or allow Ruby to hit or have everything she wants just because she wants it. It means that I will discipline her the way a 1 1/2 year old should be disciplined--with a whole lot of forgiveness and understanding for what she is going through as a developing human being.
Saturday, January 1, 2011
Happy Holidays!
Hope everyone had fun during the Holidays, I know our family did! One Ruby plus one Ronan equals a whole lot of happiness for everyone. Both Christmas and New Year's Eve were relatively relaxing holidays for us and that was just fine by me!
"Uh, Ruby? You know there are presents under the tree, right?"
Ruby has been doing great. She hasn't had a cold for a week or so and that's been a big relief. Boy did we need a break form runny noses, coughs, and keeping ourselves in quarantine. It's been nice to be out and about like we usually are. We've made it to Discovery World and the Domes recently which were fun as always. Casey and Ronan joined us at the Domes, and both kiddies adored it. I really hope our babies have as much fun growing up together as we did. Every day was an adventure. :)
Some of the family at Christmas. I love these people :)
In other news I'm pretty sure Dan has gotten me addicted to coffee. I've always liked coffee but since we started trying to have kids I cut the habit so since then I haven't had much caffeine. But now that he's working from home there is always coffee being made and I inevitably drink some. And now I am dead to the world until I have at least two cups...bummer. I know this is not a Ruby update but I really miss being able to just wake up and go! Husbands...
Need I add a caption to this?
But speaking of a Ruby update: GI-wise she has been...well, she's like a different child! 75% of her feeds are done as bolus feeds during the day, with the other 25% still on the pump at night. This is AMAZING! It means that she does not have to be attatched to that thing during the day, a true joy now that she is so mobile and close to walking. It's also is a sign that her reflux is under control. Last year Ruby was on the pump for 20 hours a day, being fed into her intestine, and her stomach was still vented 24/7 into a sputum trap. What a lovely name, right? So much fun to explain that one to strangers. "What's that? Oh, that's her sputum trap. Those are just her stomach juices sloshing around in there...just ignore it." Sure... Anyways, now she is fed into her tummy, and is being fed in a far more "normal" fashion. I can honestly say I never thought she would get to this point, at least not by this age. I am so happy for her, and I believe she will be off of the pump entirely in a few weeks! Yay, Ruby!!
Passed out after Christmas fun
Other than that life's been good...normal good. Sometimes happy, sometimes sad. I'm looking forward to a good year with my baby. Hopefully it will be surgery free and we won't have any major hospitalizations. So wish us luck!
Happy New Year! And YES, she made it to midnight!
"Uh, Ruby? You know there are presents under the tree, right?"
Some of the family at Christmas. I love these people :)In other news I'm pretty sure Dan has gotten me addicted to coffee. I've always liked coffee but since we started trying to have kids I cut the habit so since then I haven't had much caffeine. But now that he's working from home there is always coffee being made and I inevitably drink some. And now I am dead to the world until I have at least two cups...bummer. I know this is not a Ruby update but I really miss being able to just wake up and go! Husbands...
Need I add a caption to this?But speaking of a Ruby update: GI-wise she has been...well, she's like a different child! 75% of her feeds are done as bolus feeds during the day, with the other 25% still on the pump at night. This is AMAZING! It means that she does not have to be attatched to that thing during the day, a true joy now that she is so mobile and close to walking. It's also is a sign that her reflux is under control. Last year Ruby was on the pump for 20 hours a day, being fed into her intestine, and her stomach was still vented 24/7 into a sputum trap. What a lovely name, right? So much fun to explain that one to strangers. "What's that? Oh, that's her sputum trap. Those are just her stomach juices sloshing around in there...just ignore it." Sure... Anyways, now she is fed into her tummy, and is being fed in a far more "normal" fashion. I can honestly say I never thought she would get to this point, at least not by this age. I am so happy for her, and I believe she will be off of the pump entirely in a few weeks! Yay, Ruby!!
Passed out after Christmas funOther than that life's been good...normal good. Sometimes happy, sometimes sad. I'm looking forward to a good year with my baby. Hopefully it will be surgery free and we won't have any major hospitalizations. So wish us luck!
Happy New Year! And YES, she made it to midnight!Tuesday, December 21, 2010
Over-Thinking
I am most definitely a person who over-thinks things, which is probably why I love writing this blog so much. It's a way for me to sort things out in an organized fashion...or at least a slightly more organized. Anyways, I am fairly neurotic. I can be extremely self-conscious, as those closest to me know. I constantly worry about the relationships in my life; whether they are strong enough and so forth. I worry about whether I have let someone down or out, whether I have been a good enough friend, sister, daughter, wife, and of course mother. The list goes on and on. Sometimes these worries consume me. I feel suffocated and the very things I worry about come to fruition because I am in too dense a fog to prevent their occurrence. Lately one of the things I'm been over-thinking is Ruby's behavior and development.
Now I know I've talked about her development before, and I know that's something that every parent thinks about and worries about...especially parents of kids with 22q. But I also constantly worry about her behavior. I'm aware that many children with 22q Del have behavioral problems and that is ALWAYS in my mind when I watch Ruby play, get sassy, or interact with other kids. So far, when I think about it calmly and rationally, I don't think she has exhibited any behaviors that I find abnormal for her age. She does have a tendency to use repetitive behaviors to self-soothe...but it's not quite self-stemming. It's actually quite similar to some of the of things I do; things like rubbing my left arm while speaking in front of others or moving my toes together when I get mad. And her actions have not become obsessive or inhibited her play so her OT has said not to worry. I really should take her advice.
Other things that often concern me are normal toddler things. Whining about things, throwing tantrums (usually only when tired or sick), getting mad about sharing toys. While these are all standard for a toddler I am always thinking, "Oh no! Does she have a behavioral disorder? Is she not listening because of ODD? Why is she not playing nicely?" Ah..the mind of a mother! Anyway, all of these things circle in my head day after day. And I've decided to stop the cycle. No more. No more over-thinking. Ruby is who she is. She is going to fuss and whine, sometimes more than other children and sometimes less. She is not a perfect person and neither am I. I am going to deal with her moods and behavior the way I see fit, and not the way others do. I am going to enjoy all of her and not get preoccupied with how I think she "should" be acting. So there world! I am putting it out there...no more over-thinking!!!
OK, well maybe just less over-thinking. After all we can't change our very nature ;)
Now I know I've talked about her development before, and I know that's something that every parent thinks about and worries about...especially parents of kids with 22q. But I also constantly worry about her behavior. I'm aware that many children with 22q Del have behavioral problems and that is ALWAYS in my mind when I watch Ruby play, get sassy, or interact with other kids. So far, when I think about it calmly and rationally, I don't think she has exhibited any behaviors that I find abnormal for her age. She does have a tendency to use repetitive behaviors to self-soothe...but it's not quite self-stemming. It's actually quite similar to some of the of things I do; things like rubbing my left arm while speaking in front of others or moving my toes together when I get mad. And her actions have not become obsessive or inhibited her play so her OT has said not to worry. I really should take her advice.
Other things that often concern me are normal toddler things. Whining about things, throwing tantrums (usually only when tired or sick), getting mad about sharing toys. While these are all standard for a toddler I am always thinking, "Oh no! Does she have a behavioral disorder? Is she not listening because of ODD? Why is she not playing nicely?" Ah..the mind of a mother! Anyway, all of these things circle in my head day after day. And I've decided to stop the cycle. No more. No more over-thinking. Ruby is who she is. She is going to fuss and whine, sometimes more than other children and sometimes less. She is not a perfect person and neither am I. I am going to deal with her moods and behavior the way I see fit, and not the way others do. I am going to enjoy all of her and not get preoccupied with how I think she "should" be acting. So there world! I am putting it out there...no more over-thinking!!!
OK, well maybe just less over-thinking. After all we can't change our very nature ;)
Wednesday, December 8, 2010
Not Talking
Things are so good most of the time. Life moves along steadily, and for me with Ruby, very often joyfully. I wake up, get Ruby's feeding pump set. We cuddle, get dressed, slowly drag ourselves from bed. We play, eat (a little bit), go on play-dates, read, and do all of the normal things that a toddler and mother duo might do. And then there are days like today. Days that seem completely fine. Busy, normal-for-us days, and yet I find myself sobbing as I ride home in the car. So why did that happen?
I don't know for certain. I assume it was just one of those things. One of those cosmic piling of events and circumstances that lead a person to feel like crap about a particular topic...if that makes any sense. We had Speech today. It went fine, just like most of our speech sessions. Later we had an ENT appointment--more talk about talking, so to speak. Ruby and I went to dinner with friends and one tiny little thing someone said there set me off. I don't mean I was mad at them, I wasn't and I'm still not. I don't think I even seemed sad at the time. But what was said brought out my own insecurities. That I am failing her. That I am doing something wrong. And that I am the reason why Ruby is not talking.
Maybe I am. I don't know and that is part of what makes it so frustrating. Is it the 22q, is it the delayed start she got from being in the hospital so long, is it from us and how we interact with her, or is it just...her? Who knows?! I certainly don't, and although I feel as though I am doing everything in my power to help her speak perhaps I'm not. I follow my instincts and I think that I've doing a pretty good job, but nobody is perfect.
I really hate being so touchy about this. I hate that one person can make a COMPLETELY innocent comment and I'm off. My little brain just runs rampant with all of the perceived implications of what that person truly meant. By the time I'm done over-analyzing and totally misconstruing what that person said I am a mess. And that's what happened on my ride home today. So friend, if you read this and know I'm talking about you, please know that this has NOTHING to do with you and all to do with me and my own crazyiness.
My sister said the other day that the two things she has learned about parenting are to be flexible and don't judge. Because nothing happens the way you plan it and we all are just trying to get by the best way we can. It's so easy to be defensive when it comes to your kids, and when you have a kid that's different I think that the defensiveness goes into overdrive. There's all this baggage when your child has problems. For me, I'm so used to being Ruby's protector and advocate that I take offense and get emotional pretty quickly. Tonight I hid it from my friends but as soon as I had time to stew in my own thoughts I lost it.
Gah! I feel like this post is all over the place! Oh well, at least it's an accurate representation of my state of mind ;) So how to conclude? I guess I want to say that even though most of the time I feel OK about Ruby not talking, it's something that I know she's behind on and that makes me worry. And one of the things I worry about is that I am somehow to blame. So if you know me and love me, and we ever start discussing my little "non-talker" just keep all this in mind if I start acting crazy.
The Non-Talker...at least she's cute ;)
I don't know for certain. I assume it was just one of those things. One of those cosmic piling of events and circumstances that lead a person to feel like crap about a particular topic...if that makes any sense. We had Speech today. It went fine, just like most of our speech sessions. Later we had an ENT appointment--more talk about talking, so to speak. Ruby and I went to dinner with friends and one tiny little thing someone said there set me off. I don't mean I was mad at them, I wasn't and I'm still not. I don't think I even seemed sad at the time. But what was said brought out my own insecurities. That I am failing her. That I am doing something wrong. And that I am the reason why Ruby is not talking.
Maybe I am. I don't know and that is part of what makes it so frustrating. Is it the 22q, is it the delayed start she got from being in the hospital so long, is it from us and how we interact with her, or is it just...her? Who knows?! I certainly don't, and although I feel as though I am doing everything in my power to help her speak perhaps I'm not. I follow my instincts and I think that I've doing a pretty good job, but nobody is perfect.
I really hate being so touchy about this. I hate that one person can make a COMPLETELY innocent comment and I'm off. My little brain just runs rampant with all of the perceived implications of what that person truly meant. By the time I'm done over-analyzing and totally misconstruing what that person said I am a mess. And that's what happened on my ride home today. So friend, if you read this and know I'm talking about you, please know that this has NOTHING to do with you and all to do with me and my own crazyiness.
My sister said the other day that the two things she has learned about parenting are to be flexible and don't judge. Because nothing happens the way you plan it and we all are just trying to get by the best way we can. It's so easy to be defensive when it comes to your kids, and when you have a kid that's different I think that the defensiveness goes into overdrive. There's all this baggage when your child has problems. For me, I'm so used to being Ruby's protector and advocate that I take offense and get emotional pretty quickly. Tonight I hid it from my friends but as soon as I had time to stew in my own thoughts I lost it.
Gah! I feel like this post is all over the place! Oh well, at least it's an accurate representation of my state of mind ;) So how to conclude? I guess I want to say that even though most of the time I feel OK about Ruby not talking, it's something that I know she's behind on and that makes me worry. And one of the things I worry about is that I am somehow to blame. So if you know me and love me, and we ever start discussing my little "non-talker" just keep all this in mind if I start acting crazy.
The Non-Talker...at least she's cute ;)Friday, November 26, 2010
The Stereotypical Thanksgiving Post
Well, I debated whether or not to take part in the whole, "I'm thankful for..." blog thing that seems to happen on most people's sites and you know I just couldn't resist ;) So I'm thankful for:
The way Ruby wakes up like a pop-tart in the morning. She's fast asleep and then "pop" she sits up and is ready to play.
My husband's brain. Boy do I find his smarts sexy.
Ruby's love of music. She just has to dance to everything she hears.
My mother who, if you know her, is well...she's just the perfect mom and granny.
The fact that I can call up my sister and do just about any mundane thing with her like go to the store and we have an amazing time.
My nephew's dimples. I just want to eat him up.
Ruby's cuddles. Her cuddles are so intense and affectionate that you just melt.
My dad's hugs. They still make me feel warm and safe.
How Ruby needs to give everyone a kiss around her if she even kisses one person. And the fact that it has to be on the lips.
My friends, who really are the best friends in the world and they know it. Nuff said.
For everybody and everything that I don't have time to mention here but that makes me smile...and that is a big list.
Getting to know new people who face similar challenges as us with their brave and beautiful children.
Ruby's curls. They are just so frickin cute.
How Dan sleeps with Ruby in his arms every night, and how she has a crazy hard time falling asleep without him.
The amazing support I have received from extended family and friends. You all know who you are.
The way Ruby shrieks with glee at every single balloon she sees. Same goes for trees, dogs, cats, and signs.
Taking long walks with my baby.
All of the people in my life, past and present, who have helped me to become the person I am.
Wine.
My daughter's life. She makes me a better person and gives me more joy than I ever thought a body could handle.
For the best year of my life.
The way Ruby wakes up like a pop-tart in the morning. She's fast asleep and then "pop" she sits up and is ready to play.
My husband's brain. Boy do I find his smarts sexy.
Ruby's love of music. She just has to dance to everything she hears.
My mother who, if you know her, is well...she's just the perfect mom and granny.
The fact that I can call up my sister and do just about any mundane thing with her like go to the store and we have an amazing time.
My nephew's dimples. I just want to eat him up.
Ruby's cuddles. Her cuddles are so intense and affectionate that you just melt.
My dad's hugs. They still make me feel warm and safe.
How Ruby needs to give everyone a kiss around her if she even kisses one person. And the fact that it has to be on the lips.
My friends, who really are the best friends in the world and they know it. Nuff said.
For everybody and everything that I don't have time to mention here but that makes me smile...and that is a big list.
Getting to know new people who face similar challenges as us with their brave and beautiful children.
Ruby's curls. They are just so frickin cute.
How Dan sleeps with Ruby in his arms every night, and how she has a crazy hard time falling asleep without him.
The amazing support I have received from extended family and friends. You all know who you are.
The way Ruby shrieks with glee at every single balloon she sees. Same goes for trees, dogs, cats, and signs.
Taking long walks with my baby.
All of the people in my life, past and present, who have helped me to become the person I am.
Wine.
My daughter's life. She makes me a better person and gives me more joy than I ever thought a body could handle.
For the best year of my life.
Tuesday, November 16, 2010
NICU Memory
Just a little post tonight. Ruby had a playdate with a couple of her heart buddies today. While there, we mamas started swapping hospital stories and I recalled how we used to get my sister to see little Rubes. The NICU has a strict visitation policy. Only Dan and I, and our parents, were allowed to see Ruby for the first 4 1/2 months of her life. My sister had seen her at her birth and for one visit when she came home for her 2 day stint at 2 months old. This, of course, was heart breaking for her and for me.
Meeting her Auntie for the first time since birth
When we were back in the NICU and had FINALLY gotten a "window seat" we devised a way for Casey (my sis) to see Ruby. There is a waiting area just outside the NICU that is perpendicular to the main hall of the wing. So basically, if you are in the waiting area you can look out of the window and see into a few of the NICU rooms. At night, if you turn on the lights in the NICU and turn off the lights in the waiting room, you can see in pretty clearly. When we figured this out Casey used to come by and we'd hold little Ruby as close as we could to the window (as far as her leads and various wires would stretch) and she'd be able to see her niece. It was so sweet...and sad.
I LOVE this pic! I need a new one of them though, because Casey is quite pregnant here!
Meeting her Auntie for the first time since birthWhen we were back in the NICU and had FINALLY gotten a "window seat" we devised a way for Casey (my sis) to see Ruby. There is a waiting area just outside the NICU that is perpendicular to the main hall of the wing. So basically, if you are in the waiting area you can look out of the window and see into a few of the NICU rooms. At night, if you turn on the lights in the NICU and turn off the lights in the waiting room, you can see in pretty clearly. When we figured this out Casey used to come by and we'd hold little Ruby as close as we could to the window (as far as her leads and various wires would stretch) and she'd be able to see her niece. It was so sweet...and sad.
Anyway, I'm glad they get to spend so much time together now. It took months of consistent weekly visits for Ruby to get so close to her, but all that devotion paid off! Now when we pull up to her Auntie's house Ruby squeals and points with anticipation...she just loves her Auntie Casey :)
I LOVE this pic! I need a new one of them though, because Casey is quite pregnant here!
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