Today is Charley's 2nd birthday.
On November 23rd, 2008 I went into the hospital around 6 am. It was 1:49 that afternoon that she graced us with her presence, the labor and delivery were by far the easiest of the three. As it should be by the third I suppose. Jake was so nervous coming into the room, he wouldn't go near us until he knew what the IV was, and the in's and out's of the hospital room. Eventually coming over to say Hi and cuddle. Alaina was just SUPER excited, she felt like a pro at this moment, taking care of her little brother and enjoying the reality that she now FINALLY had HER BABY SISTER. Charley was such a calm baby, I remember my friend Stefanie being over and we'd just sit and chat. Charlotte chillin in her bouncy all the while. At two weeks she looked me straight in the eye and told me something. I don't know what it was, but it was important, my Mom saw it too and we both knew it was BIG. She could sit up by four months, and loved her books, or laying there with Jake and Alaina. She was smiley and happy as can be. I really felt complete silence, like everything was as it should be. The adjustment was easy and she just fit right into our lives.
April 24th, 2009 riding to Childrens in that ambulance I thought I was extremely calm. It may have been acting but I was sure I was pulling it off. I remember calling our mom's and using every effort to coolly say that this was just a precaution, that our local hospital couldn't do an ECHO that late at night so we needed to go to the Childrens hospital. At the time I was incredibly blind, the ER irritated me, no one knew what I had come for, the local hospital didn't tell them ahead of time, blah blah. It was annoying, and all I wanted to do was walk out of there because they were wasting my time for nothing.
For some reason I made Jason come down to meet me. I should've known then that if I call in the big guns, my most important ally, my rock for support that I was shaking in my boots and this was not good, but I continued on blindly. My Dad showed up at the hospital unannounced, maybe he had some sick inclination that he needed to come, or maybe he just knew that an ambulance ride however harmless it seems is never a good start. At 1 o'clock in the morning I knew my life was forever changed. I knew that there was a reason for that amublance ride beyond what they had cautiously told me. The minute I saw Charlotte's heart on that screen I knew it wasn't right, I knew a fight was about to ensue, I had no idea how big though. I just thought "okay that's wrong, how do we fix it". Looking back I still feel that pain of finding out it wasn't that simple, that there was no "fix". An adults heart, let alone a babies should not take up that much space on a monitor screen. It was obvious to me that this was life threatening, and within hours we had poked and prodded my precious baby girl, and she was now hooked up to machines and drips, and the nightmare became clear.
The next morning our doctor used the words "impressive", he said "it was impressive that she made it through the night". I was still in shock, looking back I still am. I began over the next few days planning out her funeral in my head, casket color, burial or cremation, what songs would we play. How I would tell Alaina and Jake, the worst thought revolving over and over, how will I tell Alaina and Jake.. I had not showered in days, the nurses gave me a toothbrush, Jason brought me a new shirt. I hadn't slept or ate, and I had to try and make sense out of this to a 7 and 4 year old? It is so easy to transport back to that time, and so easy to focus on how there is no guarantee we won't be back there again. At any minute, at any second, so I add things up as we go, and have a pretty good idea of how her funeral that I pray never comes, will go.
A week went by and they were amazed at how well she was doing, they started switching over her IV meds to oral ones. She would be on them the rest of her life, 1/3 of the kids get better, 1/3 stay the same, and a 1/3 get worse and need transplantation, another revolving thought. Everyone was asking me why don't they just list her, as if listing her was the fix. As good as tranplant medicine has gotten, a flu could kill a transplant patient. At anytime, any moment they can suffer massive rejection and die. A transplant just trades risk and complication, it is not a fix, and if it fails they can't just plop your old heart back in to stave off rejection. Two weeks were approaching and the doctors were ready to give her back to me, to send her home. For anyone who remembers the feeling of taking home your newborn for the first time, this was multiplied by a 100. The hospital is safe, there are people everywhere to help, to rely on. I have never been more terrified of taking a child home, the responsibility factor just became astronomical. This was like taking the weight of the world home on our shoulders, in a small, smiling package. She cried when we got home, she didn't recognize it, or she had felt she would never see it again. I'll never know what went on in her little head but as she cried and acted funny about being here, inside I felt the same way. I wanted to bolt back to the hospital, to safety in numbers.
It has been rough, I have spent a lot of alone time sitting on my ass, just THINKING. I try and get out, I try and LIVE, but there are a lot of days where I just sit, watching her like a hawk. My house has suffered, it has never seen as much dirt as it does now. Maybe my kids have suffered too, or my relationship with Jason. Maybe someday they will say things like I didn't pay enough attention to them, I'm trying to make sure that doesn't happen. Time has healed a lot, I don't over obsess (unless she is sick of course), I can be alone with her, I can allow her to be around other people without wanting to grab her immediately, and slap a mask on their face to protect her from their germs.
It has been a year and a half, and the child who I never thought would come home again. The child who I thought I would say goodbye too, is still here jumping in front of the TV. Singing her Barney songs, bossing us around like we're all her little minions "I want milky", "I want school", "No Jakey/Alaina". She speaks in sentences, and knows some of her colors and shapes. She loves her family, books, chasing her brother, tickling her sister, goldfish, her blankies. She loves me and Jason, she lights up when he comes home from work "HI DADDIE". She calls "MAMA" at 2in the morning, and runs to give us hugs. It's amazing to me, that someone sooo sick can run around here and act like it's no big deal. She refuses to acknowledge that her heart is barely working. We're the ones in pain, she's just living her life, so today I want to honor her life. The one she still has, and we still have with her.. It's very easy for me to get sucked into pity parties for us, to feel estranged from the real world. I hope that as time goes on, and she continues to thrive that it will get even easier to allow the LIFE to outshine the MAYBE'S. Strangers know she's special, they tell me things all the time, and we know more than anyone how precious her life is. She is a light that I can't imagine not having, just as bright as her brother and sister. So, HAPPY BIRTHDAY BABY GIRL:)
My Charley Girl
Tuesday, November 23, 2010
Wednesday, November 10, 2010
Charlotte's Heath Catheterization
Hi everyone,
A lot of people have not liked my using the blog, so I will just post the same update on both now and you can choose which one you want to view it on:) No biggie.. So, we arrived at a bright and early 6am to Childrens and of course it took another hour and a half to get checked in, give Charley some oral sedation medication, and then get her IV done. She was great up until they held her down for her IV, it took a good ten to fifteen minutes to calm her down after that. She was ticked off everytime she looked at her IV splint. I think the hardest thing for these kids is being held down for procedures like that, it, of course has to be done but they hate it more than anything. Once the sedation kicked in she was still awake but groggy and every few minutes as we were watching Yo Gabba Gabba, she'd say "cup", and Jason and I would look at each other in terror fearing a temper tantrum was about to ensue. It's the ups and downs of these days that make them so hard, well that, and the 4-1/2 hours of sleep we got.
They took us up about 8ish to the cath lab, and within 10 seconds of shooting the sedative into her IV line she was practically comatose. I laid her down, kissed her and we left, she was asleep as far as I could tell. I think for Jason this is the worst part of his day, seeing her passed out, eyes still half open no movement whatsoever. He can't take it and if possible I think he would run out of the door, or not go in with me at all. I always tease him about it. We ate at Subway, and although I was starving for some reason my stomach was nervous as hell and I barely ate. Being back in the hospital for this, after a seven month absence makes me relive all of my emotions that are held there. I hate it, and Dr. L'ecuyer's fellow didn't make me feel much better. No offense to medical students but they suck and always worry me more than I should be, thank goodness for Dr. Turner who actually does Charlotte's catheterizations, he always eases my anxiety.
It never ceases to amaze me all of the emotions conjured up in that hospital, as if the minute I step back through those doors I'm transported back a year a half ago, living in the PICU, barely eating breakfast/lunch/dinner at the Subway downstairs, full of fear, uncertainty, and mourning my daughter who was still playfully smiling away at everyone she met, and I just feel so terrible for all of it. I went to the bathroom and watched a little girl come in the front entrance, scatters of hair, a hospital mask on her face. I'm assuming it was cancer and she was immune compromised but being there it just sends shivers down your spine how clueless we all are. Walking around bitching about our car, our job, miniscule things in comparison to what patients and their families go through. I thought I was getting less judgemental of humanity but lately I think I'm getting worse:)
We eventually went upstairs and as we were waiting the nurse passed us in the hallway and said she had just taken Charlotte down to post-op (our pager hadn't even gone off yet). She said she was a little feisty about going to sleep (which made us laugh out loud of course), Charlotte feisty NEVER, LOL.. Dr. Turner came out, I love Dr. Turner have I not told you this yet. He is great, and said all of her pressures were normal, she did great, it went perfectly, and she would still be a candidate for transplant "when" needed.
Downstairs we met our nurse, she instructed us briefly (as we are pro's at this now) on keeping Charlotte laying flat for a few hours to which again, we laughed out loud, but said we'd try our best. She slept for another hour, maybe more and literally woke up and was non-stop talking from that point on. I have video I will post of her just blabbing away. The nurses all came in to see her and talk to her, she is like a celebrity everywhere I take that child I swear. Shockingly and I am so proud of her she did in fact stay laying down for a few hours. We let her have her drink, we fed her, all while she laid there watching TV. She really was great, the post op is what I dread most, I'm sure having nothing to do with out last one where she was ticked off and refused to go back in her room, and then ripped her IV out. She got a little feisty after the nurse removed her IV and pressure dressing on her leg, she was fidgety and wobbly all while trying to put stuff on her bed where she wanted it but we survived and all in all it was a success. We kept trying to move her DVD player for her, or her blankets and she was getting so pissed off and frustrated it was kind of funny, when cardiology came down to give her the OK to leave she was only happy if I laid on the bed and she jumped on me.
She was wonderful and besides being exhausted everything went smoothly, up until about 5 o'clock when it was apparent that she had developed a fever. I wondered if it was coming because in the afternoon when we got home she was breathing heavy and I was panicked because we had skipped her meds due to the procedure. I didn't think she could start heart failure symptoms after missing one dose so once I calmed myself down I thought she had to be heading into a fever, and sure enough she was. They don't think it is related to her cath because Jake's been sick since Friday with a fever and it only makes sense that she was next. So that's that, monitoring her today keeping the tylenol flowing. Too bad she can't have a bath until Friday but we'll get manage.
One thing that is front and center on my mind today is how the fellow, and Dr. Turner, and the nurse all used the words "when she is transplanted", not "if she is transplanted". The word used to be "if", but without improvement this long it is now a matter of "when". This is stuck in my mind, with a lot of thoughts/emotions behind it. These last few months I have allowed myself to hope for a recovery of some kind, that this will just be a trying blip in our past someday. I was reminded yesterday still how fragile her life is, and how we are not out of harms way and never will be. UGH!
Thank you for your prayers and love,
Courtney
A lot of people have not liked my using the blog, so I will just post the same update on both now and you can choose which one you want to view it on:) No biggie.. So, we arrived at a bright and early 6am to Childrens and of course it took another hour and a half to get checked in, give Charley some oral sedation medication, and then get her IV done. She was great up until they held her down for her IV, it took a good ten to fifteen minutes to calm her down after that. She was ticked off everytime she looked at her IV splint. I think the hardest thing for these kids is being held down for procedures like that, it, of course has to be done but they hate it more than anything. Once the sedation kicked in she was still awake but groggy and every few minutes as we were watching Yo Gabba Gabba, she'd say "cup", and Jason and I would look at each other in terror fearing a temper tantrum was about to ensue. It's the ups and downs of these days that make them so hard, well that, and the 4-1/2 hours of sleep we got.
They took us up about 8ish to the cath lab, and within 10 seconds of shooting the sedative into her IV line she was practically comatose. I laid her down, kissed her and we left, she was asleep as far as I could tell. I think for Jason this is the worst part of his day, seeing her passed out, eyes still half open no movement whatsoever. He can't take it and if possible I think he would run out of the door, or not go in with me at all. I always tease him about it. We ate at Subway, and although I was starving for some reason my stomach was nervous as hell and I barely ate. Being back in the hospital for this, after a seven month absence makes me relive all of my emotions that are held there. I hate it, and Dr. L'ecuyer's fellow didn't make me feel much better. No offense to medical students but they suck and always worry me more than I should be, thank goodness for Dr. Turner who actually does Charlotte's catheterizations, he always eases my anxiety.
It never ceases to amaze me all of the emotions conjured up in that hospital, as if the minute I step back through those doors I'm transported back a year a half ago, living in the PICU, barely eating breakfast/lunch/dinner at the Subway downstairs, full of fear, uncertainty, and mourning my daughter who was still playfully smiling away at everyone she met, and I just feel so terrible for all of it. I went to the bathroom and watched a little girl come in the front entrance, scatters of hair, a hospital mask on her face. I'm assuming it was cancer and she was immune compromised but being there it just sends shivers down your spine how clueless we all are. Walking around bitching about our car, our job, miniscule things in comparison to what patients and their families go through. I thought I was getting less judgemental of humanity but lately I think I'm getting worse:)
We eventually went upstairs and as we were waiting the nurse passed us in the hallway and said she had just taken Charlotte down to post-op (our pager hadn't even gone off yet). She said she was a little feisty about going to sleep (which made us laugh out loud of course), Charlotte feisty NEVER, LOL.. Dr. Turner came out, I love Dr. Turner have I not told you this yet. He is great, and said all of her pressures were normal, she did great, it went perfectly, and she would still be a candidate for transplant "when" needed.
Downstairs we met our nurse, she instructed us briefly (as we are pro's at this now) on keeping Charlotte laying flat for a few hours to which again, we laughed out loud, but said we'd try our best. She slept for another hour, maybe more and literally woke up and was non-stop talking from that point on. I have video I will post of her just blabbing away. The nurses all came in to see her and talk to her, she is like a celebrity everywhere I take that child I swear. Shockingly and I am so proud of her she did in fact stay laying down for a few hours. We let her have her drink, we fed her, all while she laid there watching TV. She really was great, the post op is what I dread most, I'm sure having nothing to do with out last one where she was ticked off and refused to go back in her room, and then ripped her IV out. She got a little feisty after the nurse removed her IV and pressure dressing on her leg, she was fidgety and wobbly all while trying to put stuff on her bed where she wanted it but we survived and all in all it was a success. We kept trying to move her DVD player for her, or her blankets and she was getting so pissed off and frustrated it was kind of funny, when cardiology came down to give her the OK to leave she was only happy if I laid on the bed and she jumped on me.
She was wonderful and besides being exhausted everything went smoothly, up until about 5 o'clock when it was apparent that she had developed a fever. I wondered if it was coming because in the afternoon when we got home she was breathing heavy and I was panicked because we had skipped her meds due to the procedure. I didn't think she could start heart failure symptoms after missing one dose so once I calmed myself down I thought she had to be heading into a fever, and sure enough she was. They don't think it is related to her cath because Jake's been sick since Friday with a fever and it only makes sense that she was next. So that's that, monitoring her today keeping the tylenol flowing. Too bad she can't have a bath until Friday but we'll get manage.
One thing that is front and center on my mind today is how the fellow, and Dr. Turner, and the nurse all used the words "when she is transplanted", not "if she is transplanted". The word used to be "if", but without improvement this long it is now a matter of "when". This is stuck in my mind, with a lot of thoughts/emotions behind it. These last few months I have allowed myself to hope for a recovery of some kind, that this will just be a trying blip in our past someday. I was reminded yesterday still how fragile her life is, and how we are not out of harms way and never will be. UGH!
Thank you for your prayers and love,
Courtney
Friday, October 15, 2010
Canceled Heart Catheterization
Hi everyone,
I just wanted to let you know that I cancelled Charlotte's heart cath in the middle of the night. I feel guilty because I cancelled it yesterday after finding out she had an ear infection. Then called them back and explained that it was a minor ear infection, she hasn't had a fever or runny nose and they decided to go ahead with it, but told me if she came down with fever overnight to call and cancel. Then she woke up last night, I had been up late already getting things together for the morning, and at that point I just threw my hands in the air so to speak. It became evident that I was trying to push getting this done because well, I worry and want to know how she is doing. I was tired, she is tired, and it just wasn't worth putting us all through misery when we weren't 100% to begin with. The process is hard enough trying to occupy her all day, getting her to drink the nasty sedative med, and then putting in her IV when she's half way out of it. Once she gets groggy she gets kind of cranky, and when she wakes up having to be still is well, almost impossible for a toddler. We need to be on top of our game for these procedures and just weren't going to be.
I'm sure the doctor and nurses in the cath lab were like "this mom is crazy" but so be it, I suppose they'd be half right, I am a little crazy at times, LOL:) Jason let me sleep this morning and I slept until noon, I can't even remember the last time I did that. So, I know I've been running on empty. I'm letting myself off the hook and will let you know when we reschedule.
Thank you and keep praying,
Courtney
I just wanted to let you know that I cancelled Charlotte's heart cath in the middle of the night. I feel guilty because I cancelled it yesterday after finding out she had an ear infection. Then called them back and explained that it was a minor ear infection, she hasn't had a fever or runny nose and they decided to go ahead with it, but told me if she came down with fever overnight to call and cancel. Then she woke up last night, I had been up late already getting things together for the morning, and at that point I just threw my hands in the air so to speak. It became evident that I was trying to push getting this done because well, I worry and want to know how she is doing. I was tired, she is tired, and it just wasn't worth putting us all through misery when we weren't 100% to begin with. The process is hard enough trying to occupy her all day, getting her to drink the nasty sedative med, and then putting in her IV when she's half way out of it. Once she gets groggy she gets kind of cranky, and when she wakes up having to be still is well, almost impossible for a toddler. We need to be on top of our game for these procedures and just weren't going to be.
I'm sure the doctor and nurses in the cath lab were like "this mom is crazy" but so be it, I suppose they'd be half right, I am a little crazy at times, LOL:) Jason let me sleep this morning and I slept until noon, I can't even remember the last time I did that. So, I know I've been running on empty. I'm letting myself off the hook and will let you know when we reschedule.
Thank you and keep praying,
Courtney
Monday, October 11, 2010
Refresh
Recently I went back not only through this blog but back on my carepages as well and read through my old posts. This has kind of become like a diary and I felt just as embarassed going back through this as I have reading an old junior high diary, YUCK. All that drama;) I realized how the tone of soo many of my posts all revolve around the same themes: extreme worry, fear, sadness, life awareness, and overwhelming emotion to name a few. A lot of them sound the same. And ALL of them are true feelings that I go through everyday, every week, every month.
Charlotte has her heart cath this week and bloodwork to get done beforehand. In the shower today I was thinking about how much I dread these weeks, almost as much as precription refill time which is also on the TO DO list for this week. So needless to say it's going to be a rough week, emotionally and physically because all of this worry just wears me the hell out.
My birthday is Wednesday and Jason surprised me last Thursday with a weekend away for him and I to Chicago (my most favorite place). He has said several times that I got jipped out of my last two birthdays because when I turned 30 I was pregnant, and when I turned 31 I was in the nightmare of my life and nursing Charlotte who 100% refused bottles and only would nurse. It was such a HARD time for me, I was literally slugging through life everyday, and I suppose still am even now to some degree.
My posts revolve around all of that so much, and yet, there has been an incredible amount of joy, grace, and wonderment in my life during all of that time as well. Charlotte is sitting here next to me making an absolute mess with her yogurt and ate eggs, and cheese before this which she has not touched in weeks. When you have a child like her it becomes of the upmost importance to keep her eating anything and everything that is halfway good for her, and more importantly that keeps her weight up. So now that she is toddlerfied, her eating is becoming sporadic and picky which in turn drives US crazy. But the point is SHE IS STILL HERE. She is smiling and laughing. "No" is her favorite word and she mummbles things you don't want her to do or have until you say the word as you're trying to figure it out, and right when you say it she says "okay" all smiley. So she is probably the only 23 month old who eats popcorn (except Alaina of course), and suckers, and gets to watch a sleepy Yo Gabba Gabba episode before she heads to bed.
She messes up Jake's lego worlds constantly and runs when he hears her to escape him. As I'm writing she is sticking a lego man in her yogurt and proclaiming "ewww, gross". She draws on my walls with pens, markers, and pencils that she finds hidden in Alaina's room and consistently breaks a silly band a day of her brother or sisters. She jumps like a maniac on the bed or in her crib, and bosses us around constantly. She dances and sings NON STOP, loves to go down the slide and swing. She is loving and hilarious and her hair is always standing straight up and her clothes stained. Charlotte in turn, is doing EVERYTHING she should be. I am so thankful for that today and tomorrow I will worry about the rest.
So not everyday is consumed with sadness, or fear. Granted those are always underlying tones, most days are filled with amazement at Alaina who received her first letter grade this year and was so proud of not just getting 100%, but 102% for her first "A". Jacob who builds anything, and everything you could ask for out of Lego's, and who can come up with rationalizations for things out of this world. My husband who has the capability to recognize that these have been some tough years for me, and I can appreciate all that he has gone through as well. Charlotte who continues to chug on. I have incredible amounts of thankfullness for my friends and family who keep us above water with all of their help and love. I also feel much hope for our future, and that whatever happens on this crazy, scary, sad, fearful, spiritual, eye opening love fest of our life that we will come out okay.
Charlotte has her heart cath this week and bloodwork to get done beforehand. In the shower today I was thinking about how much I dread these weeks, almost as much as precription refill time which is also on the TO DO list for this week. So needless to say it's going to be a rough week, emotionally and physically because all of this worry just wears me the hell out.
My birthday is Wednesday and Jason surprised me last Thursday with a weekend away for him and I to Chicago (my most favorite place). He has said several times that I got jipped out of my last two birthdays because when I turned 30 I was pregnant, and when I turned 31 I was in the nightmare of my life and nursing Charlotte who 100% refused bottles and only would nurse. It was such a HARD time for me, I was literally slugging through life everyday, and I suppose still am even now to some degree.
My posts revolve around all of that so much, and yet, there has been an incredible amount of joy, grace, and wonderment in my life during all of that time as well. Charlotte is sitting here next to me making an absolute mess with her yogurt and ate eggs, and cheese before this which she has not touched in weeks. When you have a child like her it becomes of the upmost importance to keep her eating anything and everything that is halfway good for her, and more importantly that keeps her weight up. So now that she is toddlerfied, her eating is becoming sporadic and picky which in turn drives US crazy. But the point is SHE IS STILL HERE. She is smiling and laughing. "No" is her favorite word and she mummbles things you don't want her to do or have until you say the word as you're trying to figure it out, and right when you say it she says "okay" all smiley. So she is probably the only 23 month old who eats popcorn (except Alaina of course), and suckers, and gets to watch a sleepy Yo Gabba Gabba episode before she heads to bed.
She messes up Jake's lego worlds constantly and runs when he hears her to escape him. As I'm writing she is sticking a lego man in her yogurt and proclaiming "ewww, gross". She draws on my walls with pens, markers, and pencils that she finds hidden in Alaina's room and consistently breaks a silly band a day of her brother or sisters. She jumps like a maniac on the bed or in her crib, and bosses us around constantly. She dances and sings NON STOP, loves to go down the slide and swing. She is loving and hilarious and her hair is always standing straight up and her clothes stained. Charlotte in turn, is doing EVERYTHING she should be. I am so thankful for that today and tomorrow I will worry about the rest.
So not everyday is consumed with sadness, or fear. Granted those are always underlying tones, most days are filled with amazement at Alaina who received her first letter grade this year and was so proud of not just getting 100%, but 102% for her first "A". Jacob who builds anything, and everything you could ask for out of Lego's, and who can come up with rationalizations for things out of this world. My husband who has the capability to recognize that these have been some tough years for me, and I can appreciate all that he has gone through as well. Charlotte who continues to chug on. I have incredible amounts of thankfullness for my friends and family who keep us above water with all of their help and love. I also feel much hope for our future, and that whatever happens on this crazy, scary, sad, fearful, spiritual, eye opening love fest of our life that we will come out okay.
Thursday, September 9, 2010
Family Update
It appears Fall is upon us, and although some people are not too happy about it, I welcome it with excitement. Fall is definitely my favorite time of year, I can't wait to start hitting the apple orchards, and pumpkin picking. With every year Charley is here and growing it becomes even more fun, knowing this year she'll understand it a little more than last. Getting the kids dressed up for Halloween, and celebrating her second birthday. Just typing the words "second birthday" brings tears to my eyes. I love these times in our life, when the kids are young and as excited as we are to discover it all. Winter is my second favorite and I can't wait for her to see our house decorated and the Christmas tree, and presents. Taking the kids sledding, and ice skating on our mini rink. I revel in all of it:)
Alaina started fourth grade, and Jacob first on Wednesday. Alaina was super excited that she got the teacher she wanted, and her BFF Joanne is in her class. Jake although a little nervous had a great day, and has one of his favorite guys in his class too. There was only one hiccup with Alaina missing the bus after school. I watched the bus driver close the door and drive away thinking "what the heck"? Jake and Alaina's friend Claire were in a panic as Alaina and our neighbor Richard never got on the bus. So I checked my cell phone and sure enough the school had called, several students missed their busses so I went and picked her and Richard up. I could tell she thought about crying but held it together and was relieved to be rescued:)
Charlotte did very well too, I could tell when the kids got on the bus in the morning she was a little peeved about it but didn't cry. She did walk around the house several times throughout the day calling "aina" (aka Alaina), "akey" (aka Jakey). She was very happy to be dragged around though to the store and playing with me one on one. It's always amazing how once the school year starts everyone just jumps back into routines that we completely abandoned all summer, albeit the first few weeks are tiresome while adjusting.
Charley is hilarious, absolutely hilarious. I realize that all two year olds are quirky and funny little things but she by far is the silliest and most expressive of our three children. I liken her to a little boss walking around here, she forces Alaina and Jake to lay down on a pillow, she'll cover them up and sing "nap time, go to sleep" from a well loved Yo Gabba Gabba epsiode. If they are not around to be her puppets, any grandma/grandpa, mom/dad, babysitter will do. She can talk quite well and if you don't understand what she says, it is easily figured whether she's ticked off, frustrated, ecstatic or annoyed by the face she makes. She is very good at rolling her eyes at us, or furrowed brows to show her disdain for your idea that is not in agreeance with her own. She also will walk up behind you and hug your leg randomly, or run with open arms for a hug. She has to "ug" everyone before bed, and sings the "I love you" song from Barney constantly. I suppose like most toddlers she is a web of emotions whether up or down, and temper tantrums are plenty but she also has TONS of lovin to give and is complimented constantly on her happy demeanor.
Because Alaina and Jake are so much older she already does things most two year olds wouldn't do like using a normal swing instead of a baby seat one. She puts her baby to bed, and nap time;), or feeds it and pushes it around in her stroller. Just little things, like reading her books, doing puzzles, or shape sorting but to us they make her seem more mature. I will post some video soon of her swinging, singing, and reading with us. She is such a character and I am just soo incredibly blessed to have had this time to get to know her. No matter how much time we're given she will definitely not lack a voice in our family, or place in our hearts. Her face and attitude draw attention from everyone she meets.
I recently scheduled Charlotte's next heart catheterization. It will be on October 15th, it's first thing in the morning, I think 6:00am. I always get nervous of course just to see what the results are but as she gets older I worry about how she will react to it all. When the questions will start, I already see her wincing a little during her meds and daily aspirin. She is such a smartie pants I can almost hear by her facial expressions her asking "why the hell do I do this but aina and akey don't":) I know we'll handle it all and keep moving forward but it's hard, just HARD to not be able to plan for a future. To just truly live for today as much as possible.
I have been trying to be more even keeled, focusing on the positives, and not telling the whole world every detail, but even not writing for this last month and keeping my thoughts between myself and a journal have made me feel not quite myself. I explained to Jason that there have been times over the last two months where I felt like Ashley Judd's character in the Divine Secrets of the Ya Ya Sisterhood. Granted I am not an alcoholic or hooked on prescription meds but have been driving by myself and felt the urge to just keep going. To run away from life, even for a fews days. Sometimes it feels like someone else might handle my life better, be a better mother, a better wife, daughter or friend. Maybe someone else could get over herself and not mourn for every happy, sad, exciting, momentous event as if it might be the last.
I get upset that no one understands what this feels like to guide me through, and guilty to have these feelings when so many others have it worse off, or have lost their children. There is no one to really talk to and this blog is my way of talking without actually telling you. I'm too embarassed to actually speak these things in person. To all of you who see me on a regular basis, I'm sure I talk about it constantly, sometimes I'll be with friends or family and think "why can't I just shut the hell up", "why does every little thing have to relate to MY life now"? I know people are going to get sick of it, and yet even with how much I talk about it, just so all of you know and can maybe forgive me, I am not REALLY talking about it. It's simple statements to get me by but this is where I write all of my real, true and ridiculous, overanalytic thoughts. In turn I hope it tells what really goes on in my crazy head, with a child's disease like this. I am trying to be normal, I really am.
Your feedback and comments keep me going, and I guess my ego needs those things. I'm sorry I can't be stronger, and muddle through privately.. I hope everyone knows I think of you all often, will get our thank you notes out soon from the fundraiser, and pray for you everyday.
Alaina started fourth grade, and Jacob first on Wednesday. Alaina was super excited that she got the teacher she wanted, and her BFF Joanne is in her class. Jake although a little nervous had a great day, and has one of his favorite guys in his class too. There was only one hiccup with Alaina missing the bus after school. I watched the bus driver close the door and drive away thinking "what the heck"? Jake and Alaina's friend Claire were in a panic as Alaina and our neighbor Richard never got on the bus. So I checked my cell phone and sure enough the school had called, several students missed their busses so I went and picked her and Richard up. I could tell she thought about crying but held it together and was relieved to be rescued:)
Charlotte did very well too, I could tell when the kids got on the bus in the morning she was a little peeved about it but didn't cry. She did walk around the house several times throughout the day calling "aina" (aka Alaina), "akey" (aka Jakey). She was very happy to be dragged around though to the store and playing with me one on one. It's always amazing how once the school year starts everyone just jumps back into routines that we completely abandoned all summer, albeit the first few weeks are tiresome while adjusting.
Charley is hilarious, absolutely hilarious. I realize that all two year olds are quirky and funny little things but she by far is the silliest and most expressive of our three children. I liken her to a little boss walking around here, she forces Alaina and Jake to lay down on a pillow, she'll cover them up and sing "nap time, go to sleep" from a well loved Yo Gabba Gabba epsiode. If they are not around to be her puppets, any grandma/grandpa, mom/dad, babysitter will do. She can talk quite well and if you don't understand what she says, it is easily figured whether she's ticked off, frustrated, ecstatic or annoyed by the face she makes. She is very good at rolling her eyes at us, or furrowed brows to show her disdain for your idea that is not in agreeance with her own. She also will walk up behind you and hug your leg randomly, or run with open arms for a hug. She has to "ug" everyone before bed, and sings the "I love you" song from Barney constantly. I suppose like most toddlers she is a web of emotions whether up or down, and temper tantrums are plenty but she also has TONS of lovin to give and is complimented constantly on her happy demeanor.
Because Alaina and Jake are so much older she already does things most two year olds wouldn't do like using a normal swing instead of a baby seat one. She puts her baby to bed, and nap time;), or feeds it and pushes it around in her stroller. Just little things, like reading her books, doing puzzles, or shape sorting but to us they make her seem more mature. I will post some video soon of her swinging, singing, and reading with us. She is such a character and I am just soo incredibly blessed to have had this time to get to know her. No matter how much time we're given she will definitely not lack a voice in our family, or place in our hearts. Her face and attitude draw attention from everyone she meets.
I recently scheduled Charlotte's next heart catheterization. It will be on October 15th, it's first thing in the morning, I think 6:00am. I always get nervous of course just to see what the results are but as she gets older I worry about how she will react to it all. When the questions will start, I already see her wincing a little during her meds and daily aspirin. She is such a smartie pants I can almost hear by her facial expressions her asking "why the hell do I do this but aina and akey don't":) I know we'll handle it all and keep moving forward but it's hard, just HARD to not be able to plan for a future. To just truly live for today as much as possible.
I have been trying to be more even keeled, focusing on the positives, and not telling the whole world every detail, but even not writing for this last month and keeping my thoughts between myself and a journal have made me feel not quite myself. I explained to Jason that there have been times over the last two months where I felt like Ashley Judd's character in the Divine Secrets of the Ya Ya Sisterhood. Granted I am not an alcoholic or hooked on prescription meds but have been driving by myself and felt the urge to just keep going. To run away from life, even for a fews days. Sometimes it feels like someone else might handle my life better, be a better mother, a better wife, daughter or friend. Maybe someone else could get over herself and not mourn for every happy, sad, exciting, momentous event as if it might be the last.
I get upset that no one understands what this feels like to guide me through, and guilty to have these feelings when so many others have it worse off, or have lost their children. There is no one to really talk to and this blog is my way of talking without actually telling you. I'm too embarassed to actually speak these things in person. To all of you who see me on a regular basis, I'm sure I talk about it constantly, sometimes I'll be with friends or family and think "why can't I just shut the hell up", "why does every little thing have to relate to MY life now"? I know people are going to get sick of it, and yet even with how much I talk about it, just so all of you know and can maybe forgive me, I am not REALLY talking about it. It's simple statements to get me by but this is where I write all of my real, true and ridiculous, overanalytic thoughts. In turn I hope it tells what really goes on in my crazy head, with a child's disease like this. I am trying to be normal, I really am.
Your feedback and comments keep me going, and I guess my ego needs those things. I'm sorry I can't be stronger, and muddle through privately.. I hope everyone knows I think of you all often, will get our thank you notes out soon from the fundraiser, and pray for you everyday.
Friday, August 20, 2010
Sunday, July 18, 2010
Clinic Visit- July 12, 2010
I hope all of you are having an enjoyable, healthy summer. The weather has been so beautiful here in Michigan and we have enjoyed countless hours swimming and relaxing in the pool. It has offered me a lot of relaxation and I am just as thankful to my parents as the kids are to have it.
Alaina and Charlotte were scheduled two weeks ago for their appointment with Dr. L'Ecuyer but we had to postpone until last Monday due to everyone here being sick. I always start worrying the week before an appointment so postponing them only causes extended worrying, which is not enjoyable.
No matter how much time passes with safe cardiology appointments I am always fearful we're going to begin the road I am not yet ready to travel. Thankfully we avoided it once again. Charlotte is doing great as far as her weight and height are concerned. For awhile there we were struggling crossing percentiles and Dr. L'ecuyer was seeing trends that he felt were pressing the idea of listing her further front and center. This time she had gone from the 10th percentile to the 25th. He thought she looked great, talking, and running around the office, she just continues to suck everyone in with her sweet, silly and sassy personality.
I must admit because of her recent growth pattern I had a small inkling of hope that we were going to be elated by improvement in her function. I hid it well so when he said everything was still the same I didn't show it. Her heart is exactly the same, or as Dr. L'ecuyer put it she looks lousy on her echo but great in person;) So once again I will take this and be thankful that she is still here, growing, bossing and toddlering.
Alaina's Echo also went well as there has been no change in her heart function, it is still normal. They were able to estimate her pulmonary pressures (something they can only do through heart catheterizations for Charley) and those were normal as well. He said Alaina's heart was two deviations above normal last time and now it is 1.5 so that is a good thing too. It has gotten smaller and not larger.
We discussed doing genetic testing and I am still sort of on the fence about it. The Nurse Practitioner who handles the lab gave me all of the information to look through and I think if we pursue it, I will have it started during Charlotte's next heart cath in October so she will be knocked out when the blood is taken. It can be VERY expensive and we wouldn't know how much so until the genetic lab receives the blood and talks to the insurance company. I still feel that if by some chance we could find a genetic abnormality (which there is only a 25% chance) that we could have Alaina tested to see if she carries the same abnormality. I think Dr. L'ecuyer still feels that it is unnecessary as most dilated cardiomyopathies do not carry the same familial occurence that say, hypertrophic does. I on the other hand think I will rest easier if we have it done, even with the chances that we may not find anything at all. So that question, answer is still up in the air.
I actually started this post on Monday of this week, but I am taking composition II right now and writing my paper got in the way, so today is actually Friday when I'm finishing this. It is so fitting of our story the way my week has swayed and ebbed emotionally. I suppose it's still this way every week and yet I wrote this poor suffering Mom on the CCF listserve some bullshit about how the first year is the hardest, it does get better, you learn to cope. After I finished and hit "send" I realized how much I am still "IN IT" so to speak. Anyone who saw the movie Garden State will understand what that means.
I have been feeling good, positive even that our outcome in this will be a long healthy LIFE. Notice, I don't write as often as that first year, things are returning somewhat to our normal that we had before. Jason is golfing again, I am spending time with my friends, taking classes, and not crying nearly as much. Yet every week my emotions swing, and as I read this Mom's (the one I wrote, who is only 6 months out from her daughters diagnosis) posting and finally saw ECLIPSE tonight it is reminding me how still NEW this all is. My life is soo consumed by it that at my class on wednesday we had two and a half hours to find a new research topic for our next paper I just sat there blank. I realized, through talking to my teacher that my life is ALL consumed by organs, transplants, cardiomyopathy, medications, insurance companies, respiratory rates, heart rates, nursing, specialists, and on and on. What the hell else is there, our life is still the AFTER diagnosis life and when I look at pictures of Charley at 2,3,4, months old I cry and can barely stand to look at them because every fricken idea that I had of my life went down the toilet that Apirl 24th, 2009 at 1am in the morning.
All of my idea's about what I wanted, what I believed in, my marriage, my house, car, kids, all of it has been completely altered and I can NEVER go back to being blissfully unaware. I watch my daughter like she's a ghost and not just her but Alaina and Jake as well, like I'm just waiting for all of it to disappear. People tell me all of the time that "everything is going to be fine", or your daughters so cute and strong "she's going to get better", and I just smile now and say "yeah I know" when what I really want to do is absolutely scream. I have seen an incredible amount of cute ass kids who died, they had great parents, great houses, great f in cars. They had crappy cars, and houses, and parents, and none of it mattered when they died. NONE OF IT.... The truth is Charlotte might live until tomorrow, or she might live to be 30, or she might make it to old age, and no one can tell me for sure about anything, or anyone for that matter. It sucks, loving someone so truly, with a heightened sense of poor security. Or no security at all for that matter, and I realize as people tell me ALL OF THE TIME that none of us are guaranteed a tomorrow but come on, charlotte's standing on the edge of a cliff. This is still hard, it is still raw and for me to tell that Mom that oh, "it gets better and easier was complete crap on my part". I should know better by now, no one can fix anything, or make it better, all we can do is love like hell, understand the best we can, try not to run from the pain, and pick up the people that fall.
I'll write a happy positive update later when I feel all warm and fuzzy but for tonight I'm just not feeling it.
Alaina and Charlotte were scheduled two weeks ago for their appointment with Dr. L'Ecuyer but we had to postpone until last Monday due to everyone here being sick. I always start worrying the week before an appointment so postponing them only causes extended worrying, which is not enjoyable.
No matter how much time passes with safe cardiology appointments I am always fearful we're going to begin the road I am not yet ready to travel. Thankfully we avoided it once again. Charlotte is doing great as far as her weight and height are concerned. For awhile there we were struggling crossing percentiles and Dr. L'ecuyer was seeing trends that he felt were pressing the idea of listing her further front and center. This time she had gone from the 10th percentile to the 25th. He thought she looked great, talking, and running around the office, she just continues to suck everyone in with her sweet, silly and sassy personality.
I must admit because of her recent growth pattern I had a small inkling of hope that we were going to be elated by improvement in her function. I hid it well so when he said everything was still the same I didn't show it. Her heart is exactly the same, or as Dr. L'ecuyer put it she looks lousy on her echo but great in person;) So once again I will take this and be thankful that she is still here, growing, bossing and toddlering.
Alaina's Echo also went well as there has been no change in her heart function, it is still normal. They were able to estimate her pulmonary pressures (something they can only do through heart catheterizations for Charley) and those were normal as well. He said Alaina's heart was two deviations above normal last time and now it is 1.5 so that is a good thing too. It has gotten smaller and not larger.
We discussed doing genetic testing and I am still sort of on the fence about it. The Nurse Practitioner who handles the lab gave me all of the information to look through and I think if we pursue it, I will have it started during Charlotte's next heart cath in October so she will be knocked out when the blood is taken. It can be VERY expensive and we wouldn't know how much so until the genetic lab receives the blood and talks to the insurance company. I still feel that if by some chance we could find a genetic abnormality (which there is only a 25% chance) that we could have Alaina tested to see if she carries the same abnormality. I think Dr. L'ecuyer still feels that it is unnecessary as most dilated cardiomyopathies do not carry the same familial occurence that say, hypertrophic does. I on the other hand think I will rest easier if we have it done, even with the chances that we may not find anything at all. So that question, answer is still up in the air.
I actually started this post on Monday of this week, but I am taking composition II right now and writing my paper got in the way, so today is actually Friday when I'm finishing this. It is so fitting of our story the way my week has swayed and ebbed emotionally. I suppose it's still this way every week and yet I wrote this poor suffering Mom on the CCF listserve some bullshit about how the first year is the hardest, it does get better, you learn to cope. After I finished and hit "send" I realized how much I am still "IN IT" so to speak. Anyone who saw the movie Garden State will understand what that means.
I have been feeling good, positive even that our outcome in this will be a long healthy LIFE. Notice, I don't write as often as that first year, things are returning somewhat to our normal that we had before. Jason is golfing again, I am spending time with my friends, taking classes, and not crying nearly as much. Yet every week my emotions swing, and as I read this Mom's (the one I wrote, who is only 6 months out from her daughters diagnosis) posting and finally saw ECLIPSE tonight it is reminding me how still NEW this all is. My life is soo consumed by it that at my class on wednesday we had two and a half hours to find a new research topic for our next paper I just sat there blank. I realized, through talking to my teacher that my life is ALL consumed by organs, transplants, cardiomyopathy, medications, insurance companies, respiratory rates, heart rates, nursing, specialists, and on and on. What the hell else is there, our life is still the AFTER diagnosis life and when I look at pictures of Charley at 2,3,4, months old I cry and can barely stand to look at them because every fricken idea that I had of my life went down the toilet that Apirl 24th, 2009 at 1am in the morning.
All of my idea's about what I wanted, what I believed in, my marriage, my house, car, kids, all of it has been completely altered and I can NEVER go back to being blissfully unaware. I watch my daughter like she's a ghost and not just her but Alaina and Jake as well, like I'm just waiting for all of it to disappear. People tell me all of the time that "everything is going to be fine", or your daughters so cute and strong "she's going to get better", and I just smile now and say "yeah I know" when what I really want to do is absolutely scream. I have seen an incredible amount of cute ass kids who died, they had great parents, great houses, great f in cars. They had crappy cars, and houses, and parents, and none of it mattered when they died. NONE OF IT.... The truth is Charlotte might live until tomorrow, or she might live to be 30, or she might make it to old age, and no one can tell me for sure about anything, or anyone for that matter. It sucks, loving someone so truly, with a heightened sense of poor security. Or no security at all for that matter, and I realize as people tell me ALL OF THE TIME that none of us are guaranteed a tomorrow but come on, charlotte's standing on the edge of a cliff. This is still hard, it is still raw and for me to tell that Mom that oh, "it gets better and easier was complete crap on my part". I should know better by now, no one can fix anything, or make it better, all we can do is love like hell, understand the best we can, try not to run from the pain, and pick up the people that fall.
I'll write a happy positive update later when I feel all warm and fuzzy but for tonight I'm just not feeling it.
Tuesday, May 18, 2010
Video of Charlotte
I am super excited about starting this blog, since I began searching it out and thinking about setting it up permenantly I have found even more cool things about it. I can update it from my smartphone droid just by texting, so that if we are in hospital it will be super easy to keep you all updated with status's and pictures. I can post videos of Charlotte so that all of you can grow with her and see what you have helped hold together. I may post things about our family in general as well for my long distance relatives, friends and followers of our journey. This disease and any for that matter impacts the family as a whole and I don't want Alaina and Jake to ever feel that they do not deserve special devotion.
This year I would have fallen if all of you had not been here cheering me on. People ask all of the time what they can do to help, and most of the time I have no idea. I want to say "well can you fix Charlotte;)?", but praying for her and passing on the knowledge of kids like her will have a very large impact on us all and it has meant the absolute WORLD to us.
This year I would have fallen if all of you had not been here cheering me on. People ask all of the time what they can do to help, and most of the time I have no idea. I want to say "well can you fix Charlotte;)?", but praying for her and passing on the knowledge of kids like her will have a very large impact on us all and it has meant the absolute WORLD to us.
Monday, May 17, 2010
Hi everyone,
I decided that it was time to move our families story to a different outlet. Carepages has been a wonderful way to keep everyone in touch but it is very limiting in sharing photos, isn't always user friendly, and can not upload videos at all. This diagnosis of Charley's is lifelong and although I can't promise I won't change this again, I am hoping that this blog will be a home for us, and a way that you can watch her grow and continue to be part of our journey.
We reached a year out of the hospital on April 24th and for days prior and even now a few weeks after I just can't stop reflecting, I suppose everyday is like this for me now, but every milestone brings it ever more front and center. I just couldn't help but think how far we have come and although nothing has changed within her heart, everything has changed for our's. I hope that through our story, our challenges, or whatever we face with all of you behind us, that we will all learn a little bit about the things that are most important.
So welcome to our new home;) Thank you for supporting us, praying for us and feel free to pass this along to anyone you tell about our Charley.
I decided that it was time to move our families story to a different outlet. Carepages has been a wonderful way to keep everyone in touch but it is very limiting in sharing photos, isn't always user friendly, and can not upload videos at all. This diagnosis of Charley's is lifelong and although I can't promise I won't change this again, I am hoping that this blog will be a home for us, and a way that you can watch her grow and continue to be part of our journey.
We reached a year out of the hospital on April 24th and for days prior and even now a few weeks after I just can't stop reflecting, I suppose everyday is like this for me now, but every milestone brings it ever more front and center. I just couldn't help but think how far we have come and although nothing has changed within her heart, everything has changed for our's. I hope that through our story, our challenges, or whatever we face with all of you behind us, that we will all learn a little bit about the things that are most important.
So welcome to our new home;) Thank you for supporting us, praying for us and feel free to pass this along to anyone you tell about our Charley.
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