With the summer sun, hot temperatures and the release of pressure with school being over (for now anyway;), I've been able to focus on life again lately. I keep having this overwhelming sense of panic that I should be doing homework or studying and then it dawns on me that "no wait, I can do whatever I want again, I can relax". This past week helped break the idea in with a nice night out to Greenfield Village where the kids just ran around and played on the hill overlooking the Detroit Symphony Orchestra and waited patiently with bubbles, rolling races, and lemonade for the fireworks to start. We went for pizza beforehand and honestly we don't do much as an entire family anymore so it was refreshing to enjoy the kids and just soak in the sun and atmosphere with them, and then snuggling on the hillside as a family in the dark. We also had a great time at our friends housewarming party, and I was elated to see so many faces that we just don't get to see often anymore. Life is passing us by and it's passing quickly. People that I once saw several times a week, or at least every few weeks I now only see once/twice a year if I'm lucky. I miss so much about their lives, which is why I LOVE facebook because although Jason differs in his philosophies about friendship, once you are a friend to me, or I care about you in anyway I have a tough time letting you go, even if I should.
It seems since Charlotte was born, or Charlotte's been sick her illness has CONSUMED every ounce of my being to the point that lately I'm just sick of myself. It's all I think about, it's all I talk about. I tell strangers in the grocery store, yesterday a guy I was talking to while we pushed our girls on the swings at the park. Anyone who will listen I hear myself telling them and everytime I think "what in the hell am I doing, they don't care". The whole world doesn't need to know that my baby girl is sick, that she might need a heart transplant, that it's changed me along with it. I have allowed it to make me into a better person but also used it as a means to self destruct in some ways. It rules almost every decision I make, go to the park "only if it's a short trip because Charlotte might get overheated", go on vacation "only if Charlotte seems perfect and I know where a hospital is at all times", sign her (or the others kids for that matter) up for extracurricular activities "well what if she gets exposed to germs and ends up not being able to fight some infection", "or something happens and I'm not there". It's overwhelming, it's frustrating, and the worst part is these thoughts, this sick of myselfness will never go away. Life can never rewind to the time when everything felt safe, when we had no real worries, when everything seemed so promising.
I remember in my mid-20's I went through a phase where I felt like I just had too many people in my life and I needed to let some of them go. Whether they were too negative, didn't learn their lessons, we just grew apart, whatever it may be I was becoming overwhelmed with everyone else's problems because as Jason would say I have a bad habit of taking their worries, and cares onto myself. Now here I am in my
30's and I feel like I've become that very person to a lot of people. The one whose always down, or negative, the one who can't pull herself away from what surrounds her. Charlotte getting sick has changed SO much of my thought process, granted I am still very much "ME" the way I think about almost all aspects of life has changed. The way I raise my kids has changed, and I can't guarantee that they are the better for it. The way I approach Jason and I's life is somewhat different, and again better or worse only time will decide.
Her getting sick has also forced me to grasp on to life lines that I shouldn't have. What I wrote over the winter was so true to my heart, I have been grabbing for branches, whether it be food, school, wine, money, writing, or people who have no idea that I am using them as branches (and quite possibly didn't intend on being them for me), it doesn't matter one by one I've been holding on for dear life unable to let them go. As I do, slowly try and regain control over things, or let people go I feel the same hurt that I had these first years flooding back over me and I'm not sure what to replace it with. I'm not sure how to survive all of this without them, these things saved me from myself, they became my friends. Its like replacing a pack of cigarettes that I used to love with something else to try and continue that feeling of having a best friend. I know that sounds ridiculous but to anyone whose been an addict to nicotine they'll understand what I mean. You need a new fix when things get tough, when you're feeling sad, in danger or disappointed.
I'm not sure where I'll go from here, I know I won't give up school, or wine, or writing, and knowing me I'll pick up some more people along the way some to keep and treasure and some to let go of. I just hope I'll also along the way find safety again, time to worry about the stupid stuff:) I know I'll continue using my sick of myselfness to spread the word of the #1 killer of children, and the massive need for organ donors. I know I will focus on becoming a great nurse to other kids like Charley. The light is definitely shining more brightly on the future, but for tonight I have some tears to shed for the things I'm going to try and let go of.
My Charley Girl
Wednesday, July 6, 2011
Tuesday, June 28, 2011
Carepages
Just want to let anyone new to Charlotte's page know that you can read our entire story from the beginning at http://www.carepages.com/carepages/CharlotteSmith. Someday I intend on transferring all of my early updates on her care, and my dealing with all of this over to this blog but who knows when I'll have time for that;)
Tuesday, June 7, 2011
June 7th, 2011
I am still not sure what to write today, or how to feel, or what to think and it's been two weeks since Charlotte's clinic visit with Dr. L'ecuyer. I'm sorry I haven't written to update all of you but I have been crazy busy. I only have one class this semester but it is a condensed chemistry class and between two days of labs (and lab homework), three days of lectures, quizzes, exams, and homework on top of the kids end of the school year festivities I have been non-stop playing catch up.
I have been trying to figure out how many appointments we've had for Charlotte but can't come up with an exact number. It definitely is around the ballpark of 25-30 appts in the two years since her diagnosis, not a lot compared to many of her heart friends but still enough that continuously hoping for improvement and getting none, starts to weigh on a parent. After 6 months to a year of no improvement we were told not to hope for any, so we prepared our minds to hear the words "no change" at each appointment and tried to force our hearts to feel good about it, because we know the words "she's declined" can come just as easily so we take "no change" and run with it. In truth no matter how prepared we are to hear that Charlotte has had "no change" in her heart function, it is relatively impossible to actually "not hope":)
I am getting better and better at holding off my nerves before appointments. The first year and a half I started obsessing and getting my nerves on edge about a month beforehand. Two Mondays ago, whether it is just experience, or the fact that I'm tearing my hair out busy and don't have time to think, I never really felt nervous. For some reason my stomach always knows what I may not be thinking and I get sick feeling about half way through my drive to the hospital. This time, I was more concerned with how she'd act than what they would find as getting tests done on a particularly feisty toddler is becoming more challenging. She was a nightmare during her previous echo, and then with the hospital stay in March I was on the prowl for new strategies to calm her down, or explain the procedure better. Our child life specialist has had ZERO success in making friends with Charlotte, when she came into the room with a doll during the March hospital stay Charlotte would just tell her to "go home", lol, and not in a nice tone of voice.
My new strategy was turning some of the experience over to her so I didn't carry into the office like I normally do but instead let her walk in by herself with my following behind. Without my "making her do it" I thought it might help to ease her into it herself, and she was fabulous when the nurse instructed her for her height, weight and even her blood pressure which she normally cries through. When we went into the EKG room she got a worried look, started to back out and said "go home now Momma?" I just said we couldn't go home but that I could hold her, I explained it was the sticker test, the tech gave her a toy and boom, she sat down on the table and was a champ. Thankfully, putting the stickers(leads) and wires on and off is the longest part of the test.
Next was the exam room, the NP and a new cardiology fellow came in and did their examinations, she was very talkative and friendly to them. When they told me it was time for her echo my stomach dropped because I was DREADING this. Jason wasn't with me to help occupy her, so I was going this one alone:( However she sat on the bed herself without my holding her on my chest, and besides freaking out a few brief times she allowed the tech to get all of her pictures (up until the arch anyway, then she lost it). Dr. L'ecuyer came in and told the tech he had been watching and thought she was good on the pictures so Charlotte was relieved to be done:) I am so proud of her, I know echo days will continue to be sketchy and I'm sure her moods will vary from appointment to appointment but "yeah for Charley" on this one.
So then came our chat with Dr. L'ecuyer, I was eager to hear what he had to say because the way he sounded when he told the tech that she could finish up and he'd seen enough had a different tone than usual. So we sat down and he said that he was confident in reporting that it seemed her shortening fraction had improved a little. It had been roughly 8-9% over the last two years and today seemed better. Then he waited and took a few seconds pause as I said dumbfounded "wait so you're saying her shortening fraction improved slightly?" "What is it now?" And he said that it was around 15% which brought her from the severe category to moderate. I then said "wait?? Her shortening fraction right?" And he continued to answer the same question at least three more times as I was in shock.
I think I kept waiting for him to say this was a joke, he didn't seem nearly as excited as my heart felt. He finally cracked a smile after my fifth time asking "her shortening fraction right?" and he said "yes, today it's good news". It must be incredibly hard to be a physician that deals with such tragic and heart breaking news so often.
I see it in Dr. Mastropietro too, when they have good news you can see inside they are as excited as you are, but they can't ever let it out because they have to be the realists, or the conservative ones so they can't get too emotional with patients as they know things can always reverse. Not to mention and it really is a shame that I swear they are all terrified of being sued and allowing patients into their emotions might make them vulnerable to saying something that if unfounded or that backfires, could get them in trouble.
If you had seen my face, and him sitting in the room with my calm excitement you'd understand what I mean. I think if I had grabbed his hands and made him dance a jig with me he would've;) It seems their "god complexes" have caught on and now WE EXPECT them to be "god" which is highly irrational and sad. I wish they could rejoice in every triumph just as we, the parents do, but at least they aren't fooling me, I know when they are relieved or happy about something and Dr. L'ecuyer was happy, even if he couldn't dance a jig:)
He also (as do I) knows that in the scheme of things it doesn't mean a whole lot. He knows that things can go up or down at anytime, and he knows that while you might get better, you also might get worse. There are no guarantees in cardiomyopathy, no set paths to tread. I don't care though, for right now I am just going to revel in a small triumph. The point to me is that the medication helped, and the heart can heal if given the right tools even if that's all we ever get. Dr. L'ecuyer said we'll never know if it's the meds or if she would've just improved over time, but I think he and I both know it's the meds. I just don't feel this was caused by a virus in a child that had never been sick. The fact that it took TWO YEARS to see any glimpse of improvement of her heart function also tells me this.
I practically ran to my car, I needed to get to it's solace because I knew tears were coming. There have been countless moments throughout these last two years when although I don't think God in particular healed Charlotte, or can change her course I know that he is near. Or my angels are near, or Charlotte's angels are near. I sat in the parking garage on the 11th floor overlooking Tiger Stadium, Ford Field and the sunlight glittering off a city that everyone says is dead, and I cried the happiest tears I think I've ever had. My eyes were sore and burning for two days because I just couldn't stop crying. She's not healed, she might still require a transplant at some point in her future but she improved. Even today she's not far away from the decision to be listed, I suppose she never will be but with even the tiniest improvement, it means catching a decrease and having that much more time to be well while waiting for a transplant. The last two years have felt like the grim reaper is standing at the end of my driveway just waiting to take her, and my tears are washing him away down the street just a little further.
We are fighting the fight and although I knew not to hope, for some reason lately I have looked at Charlotte and felt her hugs and wondered if she might improve. Her spirit is a strong one (lol, literally) and although I know this fight will be our life I don't feel like the other shoe is going to drop at any moment anymore. I have hope, and I have faith that she can have a long and wonderful life. By far this has been the toughest time of my life, of my marriage, of my motherhood but I think I might survive it now, just a little hope goes a long way:)
Goodnight everyone, I hope this all makes sense as I haven't slept much lately. Thank you for continuing to pray for us, and keep us in your thoughts. Thank you for passing on the word that organ donation is worth it.
XOXOXO.
I have been trying to figure out how many appointments we've had for Charlotte but can't come up with an exact number. It definitely is around the ballpark of 25-30 appts in the two years since her diagnosis, not a lot compared to many of her heart friends but still enough that continuously hoping for improvement and getting none, starts to weigh on a parent. After 6 months to a year of no improvement we were told not to hope for any, so we prepared our minds to hear the words "no change" at each appointment and tried to force our hearts to feel good about it, because we know the words "she's declined" can come just as easily so we take "no change" and run with it. In truth no matter how prepared we are to hear that Charlotte has had "no change" in her heart function, it is relatively impossible to actually "not hope":)
I am getting better and better at holding off my nerves before appointments. The first year and a half I started obsessing and getting my nerves on edge about a month beforehand. Two Mondays ago, whether it is just experience, or the fact that I'm tearing my hair out busy and don't have time to think, I never really felt nervous. For some reason my stomach always knows what I may not be thinking and I get sick feeling about half way through my drive to the hospital. This time, I was more concerned with how she'd act than what they would find as getting tests done on a particularly feisty toddler is becoming more challenging. She was a nightmare during her previous echo, and then with the hospital stay in March I was on the prowl for new strategies to calm her down, or explain the procedure better. Our child life specialist has had ZERO success in making friends with Charlotte, when she came into the room with a doll during the March hospital stay Charlotte would just tell her to "go home", lol, and not in a nice tone of voice.
My new strategy was turning some of the experience over to her so I didn't carry into the office like I normally do but instead let her walk in by herself with my following behind. Without my "making her do it" I thought it might help to ease her into it herself, and she was fabulous when the nurse instructed her for her height, weight and even her blood pressure which she normally cries through. When we went into the EKG room she got a worried look, started to back out and said "go home now Momma?" I just said we couldn't go home but that I could hold her, I explained it was the sticker test, the tech gave her a toy and boom, she sat down on the table and was a champ. Thankfully, putting the stickers(leads) and wires on and off is the longest part of the test.
Next was the exam room, the NP and a new cardiology fellow came in and did their examinations, she was very talkative and friendly to them. When they told me it was time for her echo my stomach dropped because I was DREADING this. Jason wasn't with me to help occupy her, so I was going this one alone:( However she sat on the bed herself without my holding her on my chest, and besides freaking out a few brief times she allowed the tech to get all of her pictures (up until the arch anyway, then she lost it). Dr. L'ecuyer came in and told the tech he had been watching and thought she was good on the pictures so Charlotte was relieved to be done:) I am so proud of her, I know echo days will continue to be sketchy and I'm sure her moods will vary from appointment to appointment but "yeah for Charley" on this one.
So then came our chat with Dr. L'ecuyer, I was eager to hear what he had to say because the way he sounded when he told the tech that she could finish up and he'd seen enough had a different tone than usual. So we sat down and he said that he was confident in reporting that it seemed her shortening fraction had improved a little. It had been roughly 8-9% over the last two years and today seemed better. Then he waited and took a few seconds pause as I said dumbfounded "wait so you're saying her shortening fraction improved slightly?" "What is it now?" And he said that it was around 15% which brought her from the severe category to moderate. I then said "wait?? Her shortening fraction right?" And he continued to answer the same question at least three more times as I was in shock.
I think I kept waiting for him to say this was a joke, he didn't seem nearly as excited as my heart felt. He finally cracked a smile after my fifth time asking "her shortening fraction right?" and he said "yes, today it's good news". It must be incredibly hard to be a physician that deals with such tragic and heart breaking news so often.
I see it in Dr. Mastropietro too, when they have good news you can see inside they are as excited as you are, but they can't ever let it out because they have to be the realists, or the conservative ones so they can't get too emotional with patients as they know things can always reverse. Not to mention and it really is a shame that I swear they are all terrified of being sued and allowing patients into their emotions might make them vulnerable to saying something that if unfounded or that backfires, could get them in trouble.
If you had seen my face, and him sitting in the room with my calm excitement you'd understand what I mean. I think if I had grabbed his hands and made him dance a jig with me he would've;) It seems their "god complexes" have caught on and now WE EXPECT them to be "god" which is highly irrational and sad. I wish they could rejoice in every triumph just as we, the parents do, but at least they aren't fooling me, I know when they are relieved or happy about something and Dr. L'ecuyer was happy, even if he couldn't dance a jig:)
He also (as do I) knows that in the scheme of things it doesn't mean a whole lot. He knows that things can go up or down at anytime, and he knows that while you might get better, you also might get worse. There are no guarantees in cardiomyopathy, no set paths to tread. I don't care though, for right now I am just going to revel in a small triumph. The point to me is that the medication helped, and the heart can heal if given the right tools even if that's all we ever get. Dr. L'ecuyer said we'll never know if it's the meds or if she would've just improved over time, but I think he and I both know it's the meds. I just don't feel this was caused by a virus in a child that had never been sick. The fact that it took TWO YEARS to see any glimpse of improvement of her heart function also tells me this.
I practically ran to my car, I needed to get to it's solace because I knew tears were coming. There have been countless moments throughout these last two years when although I don't think God in particular healed Charlotte, or can change her course I know that he is near. Or my angels are near, or Charlotte's angels are near. I sat in the parking garage on the 11th floor overlooking Tiger Stadium, Ford Field and the sunlight glittering off a city that everyone says is dead, and I cried the happiest tears I think I've ever had. My eyes were sore and burning for two days because I just couldn't stop crying. She's not healed, she might still require a transplant at some point in her future but she improved. Even today she's not far away from the decision to be listed, I suppose she never will be but with even the tiniest improvement, it means catching a decrease and having that much more time to be well while waiting for a transplant. The last two years have felt like the grim reaper is standing at the end of my driveway just waiting to take her, and my tears are washing him away down the street just a little further.
We are fighting the fight and although I knew not to hope, for some reason lately I have looked at Charlotte and felt her hugs and wondered if she might improve. Her spirit is a strong one (lol, literally) and although I know this fight will be our life I don't feel like the other shoe is going to drop at any moment anymore. I have hope, and I have faith that she can have a long and wonderful life. By far this has been the toughest time of my life, of my marriage, of my motherhood but I think I might survive it now, just a little hope goes a long way:)
Goodnight everyone, I hope this all makes sense as I haven't slept much lately. Thank you for continuing to pray for us, and keep us in your thoughts. Thank you for passing on the word that organ donation is worth it.
XOXOXO.
Sunday, April 24, 2011
April 24, 2011
Happy Easter everyone,
I hope all of you celebrated with family or friends and for those of you in Michigan that you were able to get out and enjoy the warmer temps and sunshine this weekend. This date is significant in my mind, strange how some dates you will always remember no matter how much time passes. The ones that aren't significant with your graduation, or wedding, or a birthdate but a date where something so profound happened to you that it is forever etched in your memory. This is one of those for me because today marks the two year anniversary of Charlotte surviving dilated cardiomyopathy and her heart failure. The time moved so incredibly slow that first night two years ago and at this point I'm not even sure we were up in the ICU yet, but I think we had just arrived and were finding out the nightmarish news and prognosis of our beautiful, smiley baby girl who had no idea how sick she ACTUALLY was.
This weekend we were lucky enough to have my brothers home from Chicago and celebrated Saturday with my in laws. It was a gorgeous day, the kids got kites from grandma and grandpa Walsh and it was so nice to walk to the park and watch them fly. As in most days and throughout their passing I notice things related to Charlotte's illness, and sometimes can't brush them off immediately. I pushed her in the stroller to the park, and while my niece Genna (also 2) was hightailing it football field lengths on foot without stopping Charlotte barely walked around for ten minutes before proclaiming that "I tired", "I cold Momma". The call signs that it's time for a break, that she can't keep up. Along with "I watch TV", or "I lay down".
While Alaina, Jake, Alexis flew their kites and Genna walked a mile, Charlotte sat in her stroller bundled in her blanket and although no one else would've known the wiser "I know" she just told me "hey Mom, I'm tired out". These are the daily reminders that your child is sick, the reasons that you can not forget and go on about your life as if all is okay and well. I constantly worry about overdoing it, about pushing her too far, and yet she continues to ask for what she needs, and do with what she can, and NEVER COMPLAINS about it (yet;). She sat there cheering the kids on from her throne, smiling and as excited as if she herself were flying them, controlling their dips and waves, and steady glides.
And I sat there taking pictures of my nieces and children, brothers, sister, and father in law thinking how lucky we are to have each other. To have a day where the weather was beautiful, the wind was perfect and we were there to enjoy each others company even if we didn't say a lot. I haven't felt that at peace in awhile, it's been a long while. My life feels like that kite with dips so low that it feels it might hit the ground, and other times soaring so high that it might touch heaven for a moment. It's hard to live life on these winds of shown uncertainty.
Today we celebrated with my family, my aunts and uncles, cousins and my grandparents in their 80's. Again just standing still for a moment in my own silence listening to the sounds of the house, to the kids going crazy outside. My aunts and uncles talking about their lives, what the kids are up to. Meet the Robinsons in the family room (one of my all time favorite movies). I so often find myself just standing in a place where everyone else is moving and all I can concentrate on is the noise, the joyful, loving noise that we all put forth. The noise that people just don't stop and listen to anymore. I know I noticed it all before this happened to Charlotte, and therefore to us but now it is so prevalent in my life. I'm struggling with all of the wind gusts, rocking us around and sometimes it is so overwhelming I just want to smash on the pavement in a pile of tattered brightly colored fabric. Then at other times it's like perfect silence, I'm just gliding along in beautiful calm where I feel like heaven is watching me whispering that it's all going to be all right.
I am so proud of Charlotte, and Alaina and Jake for who they are. That Charlotte can just sit there watching all of her fellow little people running amuck and not be able to keep up with them but still cheers them on with a smile on her face and joy in her voice as she yells with them. She inspires me. I am so proud that I have family who never concentrates on how sick she is but can take her for a walk to the swings and push her for an hour without even thinking how strange it is that she doesn't request getting off to run around. Or who will go retrieve a ball for her a hundred times not realizing that she can't continuously do it herself all afternoon.
I am so proud of my husband for CONSTANTLY handling all of this life with its incessant wind. For always fighting right along with me to hold this weaved fabric of our lives steady when the gusts pick up. I know it is not easy for him, just as it is not easy for me. I never expected to be challenged in this way, to question every aspect of my being. I know that I am proud to have all of our loved ones and friends who put up with it, who stay even though it's not always a picnic to know us. Seeing those brightly colored kites flying high reminded me so much of how our lives are entwined within each others. How each person or tiny action reflects a strand of thread and as a whole we help keep each other soaring.
I love all of you and will forever be grateful for all that you give me:)
XOXO
Courtney
I hope all of you celebrated with family or friends and for those of you in Michigan that you were able to get out and enjoy the warmer temps and sunshine this weekend. This date is significant in my mind, strange how some dates you will always remember no matter how much time passes. The ones that aren't significant with your graduation, or wedding, or a birthdate but a date where something so profound happened to you that it is forever etched in your memory. This is one of those for me because today marks the two year anniversary of Charlotte surviving dilated cardiomyopathy and her heart failure. The time moved so incredibly slow that first night two years ago and at this point I'm not even sure we were up in the ICU yet, but I think we had just arrived and were finding out the nightmarish news and prognosis of our beautiful, smiley baby girl who had no idea how sick she ACTUALLY was.
This weekend we were lucky enough to have my brothers home from Chicago and celebrated Saturday with my in laws. It was a gorgeous day, the kids got kites from grandma and grandpa Walsh and it was so nice to walk to the park and watch them fly. As in most days and throughout their passing I notice things related to Charlotte's illness, and sometimes can't brush them off immediately. I pushed her in the stroller to the park, and while my niece Genna (also 2) was hightailing it football field lengths on foot without stopping Charlotte barely walked around for ten minutes before proclaiming that "I tired", "I cold Momma". The call signs that it's time for a break, that she can't keep up. Along with "I watch TV", or "I lay down".
While Alaina, Jake, Alexis flew their kites and Genna walked a mile, Charlotte sat in her stroller bundled in her blanket and although no one else would've known the wiser "I know" she just told me "hey Mom, I'm tired out". These are the daily reminders that your child is sick, the reasons that you can not forget and go on about your life as if all is okay and well. I constantly worry about overdoing it, about pushing her too far, and yet she continues to ask for what she needs, and do with what she can, and NEVER COMPLAINS about it (yet;). She sat there cheering the kids on from her throne, smiling and as excited as if she herself were flying them, controlling their dips and waves, and steady glides.
And I sat there taking pictures of my nieces and children, brothers, sister, and father in law thinking how lucky we are to have each other. To have a day where the weather was beautiful, the wind was perfect and we were there to enjoy each others company even if we didn't say a lot. I haven't felt that at peace in awhile, it's been a long while. My life feels like that kite with dips so low that it feels it might hit the ground, and other times soaring so high that it might touch heaven for a moment. It's hard to live life on these winds of shown uncertainty.
Today we celebrated with my family, my aunts and uncles, cousins and my grandparents in their 80's. Again just standing still for a moment in my own silence listening to the sounds of the house, to the kids going crazy outside. My aunts and uncles talking about their lives, what the kids are up to. Meet the Robinsons in the family room (one of my all time favorite movies). I so often find myself just standing in a place where everyone else is moving and all I can concentrate on is the noise, the joyful, loving noise that we all put forth. The noise that people just don't stop and listen to anymore. I know I noticed it all before this happened to Charlotte, and therefore to us but now it is so prevalent in my life. I'm struggling with all of the wind gusts, rocking us around and sometimes it is so overwhelming I just want to smash on the pavement in a pile of tattered brightly colored fabric. Then at other times it's like perfect silence, I'm just gliding along in beautiful calm where I feel like heaven is watching me whispering that it's all going to be all right.
I am so proud of Charlotte, and Alaina and Jake for who they are. That Charlotte can just sit there watching all of her fellow little people running amuck and not be able to keep up with them but still cheers them on with a smile on her face and joy in her voice as she yells with them. She inspires me. I am so proud that I have family who never concentrates on how sick she is but can take her for a walk to the swings and push her for an hour without even thinking how strange it is that she doesn't request getting off to run around. Or who will go retrieve a ball for her a hundred times not realizing that she can't continuously do it herself all afternoon.
I am so proud of my husband for CONSTANTLY handling all of this life with its incessant wind. For always fighting right along with me to hold this weaved fabric of our lives steady when the gusts pick up. I know it is not easy for him, just as it is not easy for me. I never expected to be challenged in this way, to question every aspect of my being. I know that I am proud to have all of our loved ones and friends who put up with it, who stay even though it's not always a picnic to know us. Seeing those brightly colored kites flying high reminded me so much of how our lives are entwined within each others. How each person or tiny action reflects a strand of thread and as a whole we help keep each other soaring.
I love all of you and will forever be grateful for all that you give me:)
XOXO
Courtney
Tuesday, April 12, 2011
April 13, 2011 #1
Hello again,
My mom came up last night and I was able to go to the Ronald McDonald house after a Bigby run for tea around midnight, and slept until 9:30 before waking up in a panic when I saw the time thinking I had missed a zillion phone calls from Mom, or the nurse. I was in shock when my phone was empty of call notifications and got up and out of there immediately because I didn't want to miss morning rounds. Mom said Charlotte slept all night too and was in WAY better spirits when I came in this morning. She is still not 100% and I'm still concerned by her lack of eating and small amount of drinking. I can't help but go over and over the things that maybe we missed just in case. It's a curse I tell you, however, it seems the kids never eat or drink good when hospitalized so I'll keep an eye on her over the next day or so and see how she does. Since getting home she's drank some milk and ate a tiny bit of Mrs. Grass soup. I hope her appetite gets better tomorrow.
She slept on the way home from the hospital and as I was talking to my mother in law I kept watching her in the rearview concerned about her color, and touching her hands to make sure they were warm. It is that same feeling I get everytime when in truth, I just want to get the hell out of there after the first night but when they finally do give us the "all clear" I am terrified of not having them to help me. When she woke up in the driveway she cheered "WE'RE HOME" so I know she is happy to be back.
I vacumned the house, cleaned the counters, folded blankets, gave her a bath and started the laundry within the first hour and a half since we were home so I know I am happy to be home too. Its weird the rituals we go through after being away only a short time, the first thing Charlotte wanted was Just Dance 2 on the Wii:) She of course was too exhausted to dance but she sat on the couch and watched the dancer and listened to the music. The next biggest excitement was her bath which she was really excited for but again was so exhausted she just whined and complained through most of it. She finally laid on the little couch with her blankies and watched Kipper until she fell asleep.
Jake came home and seemed happy to see us, he and I chatted about how things were and I begged for a hundred hugs from my guy. He is always the same each time we go through something with Charlotte, he acts totally unaffected and yet his behavior tells a completely different story. He gets more aggresive than usual, some good bear hugs reassured him I think and he seemed better after. Alaina is never very open with how she's feeling either and I know they had to be scared to death in the ED with me all day Sunday. I watched Alaina checking Charlotte's fingers and toes in the car on the way down and yet when we talked about it before they left she said she was fine. I went to pick her up from her drama club this evening thinking she'd be sooo excited to see me but she was just like "what's up mom" like it was any other day. Once I pulled in the driveway I think it hit her because she stopped, looked at me and said "is Charley home?" and when I said yes went running into the house. The only time I heard Charlotte laugh in three days was at her big sister/brother tonight.
The similarities during this stay compared to our first stay almost exactly two years ago are strange. As then Jason had just started his new job literally weeks before our two week stint in the ICU, and this time he started a new job on Monday. Along with that I noticed today that Spring happened while we were away. It was eerie feeling the Spring air today and coming home to buds on my trees and my flowers blooming outside. It felt EXACTLY the same as it did then. Regardless she is home now, safe in her own bed, with Mr. Turtle shining his bright stars on her ceiling (great gift Aunt Nancy:) and Violet the dog sang her to sleep. I really do appreciate all of your emails, texts, facebook comments, phone calls, and comments on these blogs. It may seem ridiculous but just knowing people are there listening (well reading) and caring really lifts my spirits everyday.
I had this wonderful conversation with the chaplain at the hospital I want to write about but it is one of my emotional rants so I will post it seperately for those interested in my rants. That way those of you who just want to know how Charlotte is can skip the second one:)
Goodnight everyone
-C-
My mom came up last night and I was able to go to the Ronald McDonald house after a Bigby run for tea around midnight, and slept until 9:30 before waking up in a panic when I saw the time thinking I had missed a zillion phone calls from Mom, or the nurse. I was in shock when my phone was empty of call notifications and got up and out of there immediately because I didn't want to miss morning rounds. Mom said Charlotte slept all night too and was in WAY better spirits when I came in this morning. She is still not 100% and I'm still concerned by her lack of eating and small amount of drinking. I can't help but go over and over the things that maybe we missed just in case. It's a curse I tell you, however, it seems the kids never eat or drink good when hospitalized so I'll keep an eye on her over the next day or so and see how she does. Since getting home she's drank some milk and ate a tiny bit of Mrs. Grass soup. I hope her appetite gets better tomorrow.
She slept on the way home from the hospital and as I was talking to my mother in law I kept watching her in the rearview concerned about her color, and touching her hands to make sure they were warm. It is that same feeling I get everytime when in truth, I just want to get the hell out of there after the first night but when they finally do give us the "all clear" I am terrified of not having them to help me. When she woke up in the driveway she cheered "WE'RE HOME" so I know she is happy to be back.
I vacumned the house, cleaned the counters, folded blankets, gave her a bath and started the laundry within the first hour and a half since we were home so I know I am happy to be home too. Its weird the rituals we go through after being away only a short time, the first thing Charlotte wanted was Just Dance 2 on the Wii:) She of course was too exhausted to dance but she sat on the couch and watched the dancer and listened to the music. The next biggest excitement was her bath which she was really excited for but again was so exhausted she just whined and complained through most of it. She finally laid on the little couch with her blankies and watched Kipper until she fell asleep.
Jake came home and seemed happy to see us, he and I chatted about how things were and I begged for a hundred hugs from my guy. He is always the same each time we go through something with Charlotte, he acts totally unaffected and yet his behavior tells a completely different story. He gets more aggresive than usual, some good bear hugs reassured him I think and he seemed better after. Alaina is never very open with how she's feeling either and I know they had to be scared to death in the ED with me all day Sunday. I watched Alaina checking Charlotte's fingers and toes in the car on the way down and yet when we talked about it before they left she said she was fine. I went to pick her up from her drama club this evening thinking she'd be sooo excited to see me but she was just like "what's up mom" like it was any other day. Once I pulled in the driveway I think it hit her because she stopped, looked at me and said "is Charley home?" and when I said yes went running into the house. The only time I heard Charlotte laugh in three days was at her big sister/brother tonight.
The similarities during this stay compared to our first stay almost exactly two years ago are strange. As then Jason had just started his new job literally weeks before our two week stint in the ICU, and this time he started a new job on Monday. Along with that I noticed today that Spring happened while we were away. It was eerie feeling the Spring air today and coming home to buds on my trees and my flowers blooming outside. It felt EXACTLY the same as it did then. Regardless she is home now, safe in her own bed, with Mr. Turtle shining his bright stars on her ceiling (great gift Aunt Nancy:) and Violet the dog sang her to sleep. I really do appreciate all of your emails, texts, facebook comments, phone calls, and comments on these blogs. It may seem ridiculous but just knowing people are there listening (well reading) and caring really lifts my spirits everyday.
I had this wonderful conversation with the chaplain at the hospital I want to write about but it is one of my emotional rants so I will post it seperately for those interested in my rants. That way those of you who just want to know how Charlotte is can skip the second one:)
Goodnight everyone
-C-
Monday, April 11, 2011
April 11, 2011
Hello there,
Writing from another GREAT day in the ICU and Cardiac unit at Childrens Hospital of Michigan my favorite place;) As a precursor I must warn you I am literally going on maybe three hours of sleep in an upright chair where I laid my head on the bedside table to sleep in between bouts of Charlotte screaming, kicking and freaking out so what I write may not make any sense. Jason said as much as he was talking to me this evening while we ate.
Charlotte seems to be on the mend, the doctors are confident that this was not a heart failure incident, but most likely brought on by a stomach virus. She was very cranky today, had full strength during her tantrums and seems just plain done with all of this. No one could touch her, or talk to her until later this evening after her popsicle. She ate a little bit, but I think because they were giving her fluids was not very thirsty.
We were moved from the ICU to the cardiac unit about two hours ago and holy moly I was ready to hand her to the nurses and say "good luck", "call me when she calms down". She woke up everyone on the 4th floor and of course her roommate is this sweet baby girl who was sleeping calmly and peacefully as Charlotte threw an ultra temper tantrum. Mom and I were trying to reason with her and figure out what to do to make her better but it was pure hell for a half hour, maybe hour.
I am so glad my mom is here with me because it was rough going it alone last night and most of today. Sorry Mom for being snappy when you were just trying to help, I REALLY do appreciate you and Dad very much.
I finally got Charley's Yo Gabba Gabba game up on Nickjr and she passed out a bit ago with none of her leads on, they salined her IV for later, and they took no vitals. Thankfully the nurse waited until she was completely out and they took her off the fluids. We breathed a sigh of relief that the little monster did not stir.
This has been a horrible day, with very few calm happy go lucky Charley moments and running on no sleep is not helping. So I plan on heading to the Ronald McDonald house where my lovely brother in laws Mom is thankfully working this weekend and passing out.
I am REALLY hoping tomorrow is a better day and we get out of here because I think Charlotte can't handle much more. Pray she drinks, pees, has a bowel movement, and eats like a champ so they let us OUT;) And preferably does them in her diaper and not on me as seems to be the trend these last few days:)
Thank you for continued support, love and prayers. YAWN, YAWN GOODNIGHT
Writing from another GREAT day in the ICU and Cardiac unit at Childrens Hospital of Michigan my favorite place;) As a precursor I must warn you I am literally going on maybe three hours of sleep in an upright chair where I laid my head on the bedside table to sleep in between bouts of Charlotte screaming, kicking and freaking out so what I write may not make any sense. Jason said as much as he was talking to me this evening while we ate.
Charlotte seems to be on the mend, the doctors are confident that this was not a heart failure incident, but most likely brought on by a stomach virus. She was very cranky today, had full strength during her tantrums and seems just plain done with all of this. No one could touch her, or talk to her until later this evening after her popsicle. She ate a little bit, but I think because they were giving her fluids was not very thirsty.
We were moved from the ICU to the cardiac unit about two hours ago and holy moly I was ready to hand her to the nurses and say "good luck", "call me when she calms down". She woke up everyone on the 4th floor and of course her roommate is this sweet baby girl who was sleeping calmly and peacefully as Charlotte threw an ultra temper tantrum. Mom and I were trying to reason with her and figure out what to do to make her better but it was pure hell for a half hour, maybe hour.
I am so glad my mom is here with me because it was rough going it alone last night and most of today. Sorry Mom for being snappy when you were just trying to help, I REALLY do appreciate you and Dad very much.
I finally got Charley's Yo Gabba Gabba game up on Nickjr and she passed out a bit ago with none of her leads on, they salined her IV for later, and they took no vitals. Thankfully the nurse waited until she was completely out and they took her off the fluids. We breathed a sigh of relief that the little monster did not stir.
This has been a horrible day, with very few calm happy go lucky Charley moments and running on no sleep is not helping. So I plan on heading to the Ronald McDonald house where my lovely brother in laws Mom is thankfully working this weekend and passing out.
I am REALLY hoping tomorrow is a better day and we get out of here because I think Charlotte can't handle much more. Pray she drinks, pees, has a bowel movement, and eats like a champ so they let us OUT;) And preferably does them in her diaper and not on me as seems to be the trend these last few days:)
Thank you for continued support, love and prayers. YAWN, YAWN GOODNIGHT
Sunday, April 10, 2011
April 10, 2011
Hi everyone,
Well if you don't already know through facebook, email or a phone call from someone close to us Charlotte was admitted to Children's Hospital today. I brought her to the ER this morning and she is currently staying the night in the old familiar ICU here. She started vomiting Friday evening, into Saturday morning and then seemed to be on the mend, still laying around, not active but got up a couple of times yesterday and walked around. She bossed me around a couple of times Saturday night so I thought today she would be golden. She stayed up late and slept in until I woke her at 10:30 in the morning. She seemed a little pale, her diaper was dry (totally unusual, they are usually HUGE in the morning) her color not that great in her fingers/toes but she ate a bagel while laying on the couch and drank a glass of milk. She really seemed out of it though, after her bagel she just kept looking worse and telling me she was scared. I couldn't get her to stand up or walk, and her feet/hands turned purple and were cold. From all of this Mom training I've gathered during this process cold/purple hands and feet are not a good sign and when I pinched them the blood was slow to return. So of course I started panicking, and called Jason at work to calm me down. I gave her another half hour to perk up and then literally threw all of the kids in the car and called the on call cardiologist on the way down to Childrens. He agreed her symptoms were worrisome and to the ER we went. It took most of the day, 2 x-rays, an EKG, an ultrasound of her intestines, IV, and labs to figure out the only thing we're sure of which is she is dehydrated, and her intestines are sluggish.
Dr. Mastropietro came down to the ER to tell us that some of her numbers were concerning, and they were admitting her to his care in the ICU. I was sick to my stomach all morning and of course in the ER they don't tell you jack shit until you start bugging them. I was unusually patient today, but relieved to hear from Dr. Mastropietro because even if its scary news I just know I trust him, he's honest with me and fills me with information which I crave on days like this. I am not good with being told only parts of the story and I like to have ALL of my questions answered until I'm satisfied and like Dr. L'ecuyer he doesn't seem annoyed by my being that way. He's great!!
He reads these blogs sometimes so I want to assure him that I am not a mental mess all of the time, only on the days when I post to this blog. So everyday you don't read from me, is usually an okay day, give or take some of course. This is just a large adjustment to our lives and we still aren't pros at it as was evident by my absolute terror all morning. I told Jason that the hardest part is thinking that every little thing, every reason for an ER visit could be something that they can't fix and I don't know how to feel safe again in that regard. I remember with Alaina and Jake I never felt like they were going to die when I had to take them in the middle of the night with croup, but with Charlotte EVERYTHING feels that way. I just pray it gets easier over time, that's what I pray.
He isn't quite sure why Charlotte is dehydrated, and her symptoms of vomiting, not eating, the kidneys being dry can all be signs that her heart could be declining again so they have her on milrinone an IV medication to help assist her heart, and are giving her fluids to help with the dehydration. Her color returned almost immediately upon entering the ER, go figure. She was very lethargic today and honestly slept most of the day, she didn't fight any tests or pokes because she was just too worn out. I have never seen her like this which was incredibly scary, even when she suffered the dehdydration last year with her heart cath she was not how she was today. Even almost two years ago when we brought her to this same ICU in heart failure she was more active than she was today.
The numbers related to her cardiac side of things were actually not bad and Dr. Mastropietro is confident that this is not heart related (99%). He doesn't know if it was a stomach flu because aside from the first few hours of vomiting the episodes became irratic where usually you just keep throwing up even if nothing is in your stomach. The only other option that has been thrown out there is bladder infection which I just heard was negative. When they did her ultrasound the tech said she had a really full bladder and yet she didn't urinate the entire day. They started her milrinone and we had just discussed doing a catheter to test for a bladder infection when she finally urinated. And it was A LOT, so today was a banner day of being thrown up on and peed on:) As I sit here writing this in the same clothes, the nurses and doctors must want to vomit when they talk to me. LOL. GREAT DAY:)
Within the last few hours she has really perked up, still tired, still whining a lot but talking occasionally. She's watched movies and read books. She put up a fight when they did her catheter and her cheeks are rosy, rosy. So whatever was happening, the medications are helping. I won't know more until tomorrow and we may be here another night but hopefully we'll figure this out as I am not ready for the tranplant chat just yet. I admit after the initial terror of the morning once I spoke to Dr. Mastropietro and he told me her BNP number was only 111 my fears calmed and I realize no matter what happens we'll get through it but it takes a toll mentally and physically to get through these days.
Jason starts a brand new job tomorrow so he went home for the night, so I'll be going it alone tonight. She seems improved, still cranky, but better. Thank you for all of your kind words today and facebook posts of encouragment and prayers.
-C-
Well if you don't already know through facebook, email or a phone call from someone close to us Charlotte was admitted to Children's Hospital today. I brought her to the ER this morning and she is currently staying the night in the old familiar ICU here. She started vomiting Friday evening, into Saturday morning and then seemed to be on the mend, still laying around, not active but got up a couple of times yesterday and walked around. She bossed me around a couple of times Saturday night so I thought today she would be golden. She stayed up late and slept in until I woke her at 10:30 in the morning. She seemed a little pale, her diaper was dry (totally unusual, they are usually HUGE in the morning) her color not that great in her fingers/toes but she ate a bagel while laying on the couch and drank a glass of milk. She really seemed out of it though, after her bagel she just kept looking worse and telling me she was scared. I couldn't get her to stand up or walk, and her feet/hands turned purple and were cold. From all of this Mom training I've gathered during this process cold/purple hands and feet are not a good sign and when I pinched them the blood was slow to return. So of course I started panicking, and called Jason at work to calm me down. I gave her another half hour to perk up and then literally threw all of the kids in the car and called the on call cardiologist on the way down to Childrens. He agreed her symptoms were worrisome and to the ER we went. It took most of the day, 2 x-rays, an EKG, an ultrasound of her intestines, IV, and labs to figure out the only thing we're sure of which is she is dehydrated, and her intestines are sluggish.
Dr. Mastropietro came down to the ER to tell us that some of her numbers were concerning, and they were admitting her to his care in the ICU. I was sick to my stomach all morning and of course in the ER they don't tell you jack shit until you start bugging them. I was unusually patient today, but relieved to hear from Dr. Mastropietro because even if its scary news I just know I trust him, he's honest with me and fills me with information which I crave on days like this. I am not good with being told only parts of the story and I like to have ALL of my questions answered until I'm satisfied and like Dr. L'ecuyer he doesn't seem annoyed by my being that way. He's great!!
He reads these blogs sometimes so I want to assure him that I am not a mental mess all of the time, only on the days when I post to this blog. So everyday you don't read from me, is usually an okay day, give or take some of course. This is just a large adjustment to our lives and we still aren't pros at it as was evident by my absolute terror all morning. I told Jason that the hardest part is thinking that every little thing, every reason for an ER visit could be something that they can't fix and I don't know how to feel safe again in that regard. I remember with Alaina and Jake I never felt like they were going to die when I had to take them in the middle of the night with croup, but with Charlotte EVERYTHING feels that way. I just pray it gets easier over time, that's what I pray.
He isn't quite sure why Charlotte is dehydrated, and her symptoms of vomiting, not eating, the kidneys being dry can all be signs that her heart could be declining again so they have her on milrinone an IV medication to help assist her heart, and are giving her fluids to help with the dehydration. Her color returned almost immediately upon entering the ER, go figure. She was very lethargic today and honestly slept most of the day, she didn't fight any tests or pokes because she was just too worn out. I have never seen her like this which was incredibly scary, even when she suffered the dehdydration last year with her heart cath she was not how she was today. Even almost two years ago when we brought her to this same ICU in heart failure she was more active than she was today.
The numbers related to her cardiac side of things were actually not bad and Dr. Mastropietro is confident that this is not heart related (99%). He doesn't know if it was a stomach flu because aside from the first few hours of vomiting the episodes became irratic where usually you just keep throwing up even if nothing is in your stomach. The only other option that has been thrown out there is bladder infection which I just heard was negative. When they did her ultrasound the tech said she had a really full bladder and yet she didn't urinate the entire day. They started her milrinone and we had just discussed doing a catheter to test for a bladder infection when she finally urinated. And it was A LOT, so today was a banner day of being thrown up on and peed on:) As I sit here writing this in the same clothes, the nurses and doctors must want to vomit when they talk to me. LOL. GREAT DAY:)
Within the last few hours she has really perked up, still tired, still whining a lot but talking occasionally. She's watched movies and read books. She put up a fight when they did her catheter and her cheeks are rosy, rosy. So whatever was happening, the medications are helping. I won't know more until tomorrow and we may be here another night but hopefully we'll figure this out as I am not ready for the tranplant chat just yet. I admit after the initial terror of the morning once I spoke to Dr. Mastropietro and he told me her BNP number was only 111 my fears calmed and I realize no matter what happens we'll get through it but it takes a toll mentally and physically to get through these days.
Jason starts a brand new job tomorrow so he went home for the night, so I'll be going it alone tonight. She seems improved, still cranky, but better. Thank you for all of your kind words today and facebook posts of encouragment and prayers.
-C-
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