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 Charley Girl
Tuesday, April 12, 2011
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-
Tuesday, March 15, 2011
Shades of grey
The sun was shining yesterday, and today in the morning. I have been holding out for sunshine so much that I bundled up and sat freezing out on my deck yesterday doing homework in hopes it might save me. I'm not just using "save me" as a metaphor, I have been drowning in shades of grey. There has been no blue, no warmth, just cold grey. This has been a rough winter, rougher than the previous one. Possibly I felt last winter that it was okay to still be sad, or feel depressed because I was still new at this cardiomyopathy stuff. After such a good summer, fall and early winter I was doing great, enjoying school and spending time with the kids, noticing things that I was doing that I hadn't since Charlottes diagnosis. Granted there are always bumps on my emotional road, but nothing like lately. I'm not sure why I've been led off the road and down this path to where I've been, but it has felt LONG, with a lake that tangles you in the branches that line it and push you down. There have been hikers to try and "save me" but this has required grabbing branches to try and climb back up on my own, and it has been unlike any sadness, or anger I've experienced before. It has faded some with color returning occasionally with a night out here with friends, a conversation that intrigues me or the daily routine of having Jason, Brandon and the kids with me, but as soon as they left me in silence I was alone and it's return would take over and I'd allow it to swallow me.
I read an article recently about parents of premature and chronically ill children, that it is common to suffer post traumatic stress disorder any amount of time after watching a child in an ICU for any length of time. I don't know if this possibly could have been reality, or still is but hospitals have shades of grey everywhere. Some shades darker or lighter depending on the situation a family is facing. I remember feeling like blackness in that ICU somedays, and with all that I don't know, I need to write about everything that has gone down to find that last branch to possibly heal my cold skin, and open cuts/scratches. To bring that color back that has been missing for quite awhile now.
This task is so daunting, even with a child who appears SO incredibly well on the outside, just knowing all the "possibilties", the "what if's" and how it affects everyone in the family is a task I pray that I master, I have to master, if we're going to survive this.. Being me sometimes I feel that you have to go to the deepest depths to come out with a better understanding of how to survive them for next time, if there is to ever be a next time. Maybe this journey over the last few months has been part of that, I just hope the lake is getting more shallow, temperature warming, the color returning.
Last week the CCF support group lost three children in one week, without a doubt I hit bottom. The murky, lonely, dark bottom. Some think I need to pull myself away from the group to survive my own life and I agree that I am invested heavily in these families. I don't however think I could ever turn away from them now, not entirely. They mean too much to me, they are formidably the ONLY people who understand my life now. It's true that every once in awhile we lose a child (rare that it would be three), however, according to everyone whose been comforting me for so long now, anyone, can lose a child at anytime. The problem that is failed to be noticed is that for us it actually happens, it's not just a possibility, it's a REAL reality. No matter how much I pull myself out of these small whirlpools that spin me around sometimes, they also feed me with love, with knowledge, with asking nothing in return except to be a feeder to their whirlpools too. It doesn't matter the level of hurt a family is feeling, no one judges there whether I have any right to be as upset as I am because my daughter is doing okay right now. They just know that whatever stage we're at, we're all there for each other battling the uncertainties, the same branches. So I've asked to get one email a day that includes everything, instead of 50 individual ones from the group. I will open myself to the idea that maybe it's time for someone uninvolved to listen to me, to allow me to say all of the stuff that I want to write here but don't because it'd be weird, and I'm weird enough to you all as I already am :)
Most of the time, in fact 95% of the time the stories we share are of hope for new discoveries, triumphs a child who had no hope of overcame. We share doctors that are skilled in certain areas we need, and without a doubt there is ALWAYS an answer when you're in a dark hour. I admit I might have to take a step back and FOCUS on the LIFE that IS in front of me until I am so seasoned at this that I can be support for others. A friend recently said something that although it's tough to accept, is also completely true. She said that "I've only been at this under two years, it's still new and it's still fresh". In the scheme of Charlotte's lifetime, this is such a small amount of time when it seems like SO long ago sometimes. Often I start to sink deeper because I feel so weak to it still, and I hate feeling weak, which then makes me miss another branch and I fall deeper still. She said I am still "a mom in NEED, a mom of a sick child", it reminded me that maybe I'm not ready to be the ultimate cardiomyopathy conquerer, fundraiser champion, counselor to all. I SO want to be but maybe I just need to take it one branch at a time. I don't want my husband paying for it's cost anymore, I've already given enough of my life to this disease. I don't want my children paying for it's cost because they witness my frustration enough on a daily basis.
So today I will begin to grab one by one until I am fully released from this grey lake, and I will with each step TRY to walk the path back, a little closer to acceptance, forgiveness, regained faith, and each bit of my personality and will power that I have allowed lost these last few months.
I will also call someone bigger than myself to help:)
Thanks everyone for your love and support lately, even when I want to be angry at you for telling me what to do, or not do. This won't be the last time you see me cry, or be angry, Charlotte has a LONG way to go in this lifetime.
XOXO
Courtney
I read an article recently about parents of premature and chronically ill children, that it is common to suffer post traumatic stress disorder any amount of time after watching a child in an ICU for any length of time. I don't know if this possibly could have been reality, or still is but hospitals have shades of grey everywhere. Some shades darker or lighter depending on the situation a family is facing. I remember feeling like blackness in that ICU somedays, and with all that I don't know, I need to write about everything that has gone down to find that last branch to possibly heal my cold skin, and open cuts/scratches. To bring that color back that has been missing for quite awhile now.
This task is so daunting, even with a child who appears SO incredibly well on the outside, just knowing all the "possibilties", the "what if's" and how it affects everyone in the family is a task I pray that I master, I have to master, if we're going to survive this.. Being me sometimes I feel that you have to go to the deepest depths to come out with a better understanding of how to survive them for next time, if there is to ever be a next time. Maybe this journey over the last few months has been part of that, I just hope the lake is getting more shallow, temperature warming, the color returning.
Last week the CCF support group lost three children in one week, without a doubt I hit bottom. The murky, lonely, dark bottom. Some think I need to pull myself away from the group to survive my own life and I agree that I am invested heavily in these families. I don't however think I could ever turn away from them now, not entirely. They mean too much to me, they are formidably the ONLY people who understand my life now. It's true that every once in awhile we lose a child (rare that it would be three), however, according to everyone whose been comforting me for so long now, anyone, can lose a child at anytime. The problem that is failed to be noticed is that for us it actually happens, it's not just a possibility, it's a REAL reality. No matter how much I pull myself out of these small whirlpools that spin me around sometimes, they also feed me with love, with knowledge, with asking nothing in return except to be a feeder to their whirlpools too. It doesn't matter the level of hurt a family is feeling, no one judges there whether I have any right to be as upset as I am because my daughter is doing okay right now. They just know that whatever stage we're at, we're all there for each other battling the uncertainties, the same branches. So I've asked to get one email a day that includes everything, instead of 50 individual ones from the group. I will open myself to the idea that maybe it's time for someone uninvolved to listen to me, to allow me to say all of the stuff that I want to write here but don't because it'd be weird, and I'm weird enough to you all as I already am :)
Most of the time, in fact 95% of the time the stories we share are of hope for new discoveries, triumphs a child who had no hope of overcame. We share doctors that are skilled in certain areas we need, and without a doubt there is ALWAYS an answer when you're in a dark hour. I admit I might have to take a step back and FOCUS on the LIFE that IS in front of me until I am so seasoned at this that I can be support for others. A friend recently said something that although it's tough to accept, is also completely true. She said that "I've only been at this under two years, it's still new and it's still fresh". In the scheme of Charlotte's lifetime, this is such a small amount of time when it seems like SO long ago sometimes. Often I start to sink deeper because I feel so weak to it still, and I hate feeling weak, which then makes me miss another branch and I fall deeper still. She said I am still "a mom in NEED, a mom of a sick child", it reminded me that maybe I'm not ready to be the ultimate cardiomyopathy conquerer, fundraiser champion, counselor to all. I SO want to be but maybe I just need to take it one branch at a time. I don't want my husband paying for it's cost anymore, I've already given enough of my life to this disease. I don't want my children paying for it's cost because they witness my frustration enough on a daily basis.
So today I will begin to grab one by one until I am fully released from this grey lake, and I will with each step TRY to walk the path back, a little closer to acceptance, forgiveness, regained faith, and each bit of my personality and will power that I have allowed lost these last few months.
I will also call someone bigger than myself to help:)
Thanks everyone for your love and support lately, even when I want to be angry at you for telling me what to do, or not do. This won't be the last time you see me cry, or be angry, Charlotte has a LONG way to go in this lifetime.
XOXO
Courtney
Thursday, March 3, 2011
Clinic Visit
Hi everyone,
I just wanted to let you know how Charlotte's cardiology visit went today. For the first time EVER in two years the parking garage was full at the hospital and valet was backed up like crazy. I think it's pretty ridiculous that we have to pay $2.50 just to get into the parking garage in the first place but then to have to pay the $4.00 for valet when THERE IS NO WHERE ELSE TO PARK, is just plain IRRITATING. I was pumped because I arrived 20 minutes EARLY, yes 20 and we all know that Courtney Smith arriving anywhere early is a miracle in itself. Well due to the parking hassle I ended up being 15 minutes LATE. If I had been my old self the head of Children's Hospital would've been standing outside in the valet lane giving everyone their $4.00 back. Once I finally got upstairs to cardiology the girl at the front desk said they'd been hearing that a lot lately and that we should really complain to make them do something about it. So I might put in a call or email to someone just to add to the "fix the issue" campaign but I am ultra proud of myself as I did not swear once, or sigh, or want to punch anyone. The way I've been feeling lately I accomplished a great feat in that today;)
The one thing I love about our cardiology office is that no one is ever in a hurry to do anything. I think when you are in the medicine business you learn how to be EXTREMELY patient and I could've been an hour late and no one would've cared.. They are always laid back and just go with the flow, I could learn a few things from them;)
It never ceases to amaze me how calm and collected I feel going there and yet my stomach is ALWAYS a mess. Today on the way as I was trying to calm my own, Charlotte said "my tummy hurts" and all I could think of was how she might inherit the anxious stomach which would really suck because she has LOTS of nerve racking stuff to go through yet..
I had been preparing her for days now in hopes that she would cooperate a little better for her echo than she did last time. I showed her video's of other little kids getting them, and how good they behaved only to hear her several "swiper no swipping's" and "no, no I not's". It turned out that they didn't need one this time which was good for her, bad for me. I like having them because I know she at least hasn't gotten any worse. Unfortunately my preparing her might have backfired because she was terrified of everything that she normally does really well at. Once she realized it wasn't the echo she'd calm down. Not sure how I'm going to approach it next time, but maybe I shouldn't try so hard to make her accept it.
Regardless she hasn't seemed any different and keeps chugging away so I assume and Dr. L'ecuyer confirmed that she appears unchanged. We talked about preschool a little and he doesn't feel that she needs any restrictions other than the staff and teachers allowing her to regulate her own activity level. I'm not sure how I should handle that, I've been reading about doing a 504 but he's not sure it is needed for preschool. I'll talk to the preschool program about it when I sign her up in two weeks. We discussed genetic testing and we can do that anytime, it's just up to me to say the word. I keep talking myself out of it which is ridiculous on several fronts. If I do it and they don't find any gene mutation that caused her cardiomyopathy it won't change anything we just continue on as we are now, and even if they did find something we would continue on as we are now. However, if we did find a mutation, all of us could also be tested for that mutation and it may protect other family members from experiencing what Charlotte has.
As you can see whenever I leave appointments I almost always end up with more questions than what I came with. This is the story of this life, questions, answers, questions.
He did outfit her with a 24 hour holter which has five leads attached to a little box on a string she has to wear around her neck. At first after she got over being ticked about the "stickers" as I call them, she said "oooo a necklace" when we put the box on. We've been home for a few hours now, (she likes all clothes off at home) and therefore the box allure is starting to wear off. We've had three attempts to remove the box so far but all in all she's playing and just following her normal routine. We'll see how bedtime goes:)
Dr. L'ecuyer told me today that one of his patients who remained stable like Charlotte for four years declined recently and required transplant. We again discussed how variable the disease is, and just because that is another childs story doesn't mean it will be Charlotte's. Another nuance of our new life, we just don't know what her story will be. For all who think I should be moving on, over my fears, just living my life normally, that is most what you misunderstand. A parents playbook consists of raising your children to be their best, elementary school-jr. high-high school and college. Then it's work, possibly marriage, and grandchildren along with all of the glorious, happy, dirty, messy, emotional in between. A parent of a child with a chronic life threatening illness doesn't get that playbook. Our playbook was shredded, it has no plays, it is yet to be determined. Does it mean we won't enjoy IT, whatever "IT" is? No of course not, but living this way is hard.
He was funny because he has another doctor shadowing him and was sure to explain to her that he tells me things she might not hear him tell others. Because, as he put it "Mrs. Smith wants to know EVERYTHING", which of course gave a good laugh. Driving home before I made my phone calls, I thought about his comment, which is totally hilarious and true. I do want to know EVERYTHING. I want to obsess over it, it is my survival mechanism.
I may have to write more about that thought later, because I have been feeling very pent up lately and have so many thoughts to let out. However my thoughts of late aren't all that pleasant, and anger has been at the top of my list so for now I'm sending this off so you know how it went today.
Thanks and Love,
Courtney
I just wanted to let you know how Charlotte's cardiology visit went today. For the first time EVER in two years the parking garage was full at the hospital and valet was backed up like crazy. I think it's pretty ridiculous that we have to pay $2.50 just to get into the parking garage in the first place but then to have to pay the $4.00 for valet when THERE IS NO WHERE ELSE TO PARK, is just plain IRRITATING. I was pumped because I arrived 20 minutes EARLY, yes 20 and we all know that Courtney Smith arriving anywhere early is a miracle in itself. Well due to the parking hassle I ended up being 15 minutes LATE. If I had been my old self the head of Children's Hospital would've been standing outside in the valet lane giving everyone their $4.00 back. Once I finally got upstairs to cardiology the girl at the front desk said they'd been hearing that a lot lately and that we should really complain to make them do something about it. So I might put in a call or email to someone just to add to the "fix the issue" campaign but I am ultra proud of myself as I did not swear once, or sigh, or want to punch anyone. The way I've been feeling lately I accomplished a great feat in that today;)
The one thing I love about our cardiology office is that no one is ever in a hurry to do anything. I think when you are in the medicine business you learn how to be EXTREMELY patient and I could've been an hour late and no one would've cared.. They are always laid back and just go with the flow, I could learn a few things from them;)
It never ceases to amaze me how calm and collected I feel going there and yet my stomach is ALWAYS a mess. Today on the way as I was trying to calm my own, Charlotte said "my tummy hurts" and all I could think of was how she might inherit the anxious stomach which would really suck because she has LOTS of nerve racking stuff to go through yet..
I had been preparing her for days now in hopes that she would cooperate a little better for her echo than she did last time. I showed her video's of other little kids getting them, and how good they behaved only to hear her several "swiper no swipping's" and "no, no I not's". It turned out that they didn't need one this time which was good for her, bad for me. I like having them because I know she at least hasn't gotten any worse. Unfortunately my preparing her might have backfired because she was terrified of everything that she normally does really well at. Once she realized it wasn't the echo she'd calm down. Not sure how I'm going to approach it next time, but maybe I shouldn't try so hard to make her accept it.
Regardless she hasn't seemed any different and keeps chugging away so I assume and Dr. L'ecuyer confirmed that she appears unchanged. We talked about preschool a little and he doesn't feel that she needs any restrictions other than the staff and teachers allowing her to regulate her own activity level. I'm not sure how I should handle that, I've been reading about doing a 504 but he's not sure it is needed for preschool. I'll talk to the preschool program about it when I sign her up in two weeks. We discussed genetic testing and we can do that anytime, it's just up to me to say the word. I keep talking myself out of it which is ridiculous on several fronts. If I do it and they don't find any gene mutation that caused her cardiomyopathy it won't change anything we just continue on as we are now, and even if they did find something we would continue on as we are now. However, if we did find a mutation, all of us could also be tested for that mutation and it may protect other family members from experiencing what Charlotte has.
As you can see whenever I leave appointments I almost always end up with more questions than what I came with. This is the story of this life, questions, answers, questions.
He did outfit her with a 24 hour holter which has five leads attached to a little box on a string she has to wear around her neck. At first after she got over being ticked about the "stickers" as I call them, she said "oooo a necklace" when we put the box on. We've been home for a few hours now, (she likes all clothes off at home) and therefore the box allure is starting to wear off. We've had three attempts to remove the box so far but all in all she's playing and just following her normal routine. We'll see how bedtime goes:)
Dr. L'ecuyer told me today that one of his patients who remained stable like Charlotte for four years declined recently and required transplant. We again discussed how variable the disease is, and just because that is another childs story doesn't mean it will be Charlotte's. Another nuance of our new life, we just don't know what her story will be. For all who think I should be moving on, over my fears, just living my life normally, that is most what you misunderstand. A parents playbook consists of raising your children to be their best, elementary school-jr. high-high school and college. Then it's work, possibly marriage, and grandchildren along with all of the glorious, happy, dirty, messy, emotional in between. A parent of a child with a chronic life threatening illness doesn't get that playbook. Our playbook was shredded, it has no plays, it is yet to be determined. Does it mean we won't enjoy IT, whatever "IT" is? No of course not, but living this way is hard.
He was funny because he has another doctor shadowing him and was sure to explain to her that he tells me things she might not hear him tell others. Because, as he put it "Mrs. Smith wants to know EVERYTHING", which of course gave a good laugh. Driving home before I made my phone calls, I thought about his comment, which is totally hilarious and true. I do want to know EVERYTHING. I want to obsess over it, it is my survival mechanism.
I may have to write more about that thought later, because I have been feeling very pent up lately and have so many thoughts to let out. However my thoughts of late aren't all that pleasant, and anger has been at the top of my list so for now I'm sending this off so you know how it went today.
Thanks and Love,
Courtney
Thursday, January 20, 2011
Complacency
As most of you are well aware every month when it is time to refill Charlotte's meds I almost always end up crying on the way home, or parked in my space outside the hospital. There is always some small frustration that sets me off and reminds me of all of this messiness; how much dealing with insurance companies, receiving bills for $700, safety of the meds I am picking up, seeing the other families/children hurting is just worlds away from where my life was two years ago. I hate it everytime, I've hated it for almost two years. It's like seeing a picture of someone you loved who has died and mourning them all over again each time. I know I still have a long way to go in accepting this reality of ours, in just finding a way to be okay with it. My psychology teachers advice of "accepting it all", the only way she say's our children can deal with chronic illness such as this is for us to accept it, all of it, the meds, the tests, the pokes, the pain, and even possibly their death. I'm not sure I can accept it all and be okay with it, but my hope is someday I will fake it like an oscar winning actress. Right now I do a good job, walk around with a smile whether I'm happy or breaking inside on that particular day. I really expected to be healed by now, to have dealt with it all and gone back to my happy go lucky life. My 100% belief that everything is "gonna be all right" as the song goes.
I finally made the jump to find a pharmacy closer to my home. I took a day, researched, called around, got prices etc.. No one made me feel as safe as I felt at Childrens pharmacy no matter how much their customer service sucks. I was advised however after starting a mini peaceful protest in their lobby last time that they are just too busy of a pharmacy, can't manage to have good customer service and that I should try and find a specialty pharmacy closer to my home so they wouldn't have to inconvenience me for one hour drives anymore.. I left in shock, and super ticked off, the line of people behind me jumped on my bandwagon. Regardless the search was on and of course when I talked to our nurse Jessica she immediately had a wonderful pharmacy that a lot of their tranplant patients use. I have officially learned my lesson, "always call Dr. L'ecuyer's office first for advice".. Duh..
Anyhow the pharmacist they recommended seems awesome so far. He is friendly, very customer oriented. He called me to get all of our information and said he would get all of our meds to be delivered on the same day. DELIVERED people, no driving, no waiting in line. Easy, he made it incredibly easy. Eric the pharmacist might become my new best friend:)
In going through this easiness I have also been going through a terrifying feeling. I think one of the main reasons I stayed in my misery with our previous pharmacy for so long is because I want the pain in the ass, cry in my car experience. As much as I hate it, having things easy has become incredibly "scary". I fear being complacent, I fear that Charley's meds, doctors appointments, and routine will become so "routine" that I won't catch something catastrophic. That "when" or "if" we find ourselves back in a life threatening situation, I will have forgotten how to survive it.
On New Years Eve we had a situation, something I have not been able to get off my mind. Jason and I were in the middle of a party and all of a sudden I had to completely switch gears and call the on call cardiologist who advised us, my parents, and Charlotte to come in for observation. We left 20 people partying at our house while we were swept back into hospital mode. I always think of Jason and Jake when they come home from work/school. They are not good at switching gears, and that's what all of this is. It's going from your LIFE to SURVIVAL in a matter of minutes. It's getting there on time, it's understanding all of the information being thrown at you, it's watching your most precious beings tortured with needles and wires. We were lucky and en route received a call back that we were in the clear and that if she wasn't experiencing any symptoms we could return to our nights. So we went home to our house full of people and I drank, cranked up the tunes and did the only thing that really calms me, danced. Along with calling to check on Charlotte every hour until 4:30 in the morning. For four days after I stayed up almost all night checking her heart and lung sounds, worried until I finally emailed Dr. L'ecuyer to tell me I could stop worrying. I knew she was fine but it's survival, I hadn't checked her sounds or counted rates in months, and here I was switching gears back three, four months ago in a matter of a day. It's a ton to deal with in a short amount of time, and if I get out of practice my fear is I will forget how to survive. I will crumble. Complacency will kill me.
I finally made the jump to find a pharmacy closer to my home. I took a day, researched, called around, got prices etc.. No one made me feel as safe as I felt at Childrens pharmacy no matter how much their customer service sucks. I was advised however after starting a mini peaceful protest in their lobby last time that they are just too busy of a pharmacy, can't manage to have good customer service and that I should try and find a specialty pharmacy closer to my home so they wouldn't have to inconvenience me for one hour drives anymore.. I left in shock, and super ticked off, the line of people behind me jumped on my bandwagon. Regardless the search was on and of course when I talked to our nurse Jessica she immediately had a wonderful pharmacy that a lot of their tranplant patients use. I have officially learned my lesson, "always call Dr. L'ecuyer's office first for advice".. Duh..
Anyhow the pharmacist they recommended seems awesome so far. He is friendly, very customer oriented. He called me to get all of our information and said he would get all of our meds to be delivered on the same day. DELIVERED people, no driving, no waiting in line. Easy, he made it incredibly easy. Eric the pharmacist might become my new best friend:)
In going through this easiness I have also been going through a terrifying feeling. I think one of the main reasons I stayed in my misery with our previous pharmacy for so long is because I want the pain in the ass, cry in my car experience. As much as I hate it, having things easy has become incredibly "scary". I fear being complacent, I fear that Charley's meds, doctors appointments, and routine will become so "routine" that I won't catch something catastrophic. That "when" or "if" we find ourselves back in a life threatening situation, I will have forgotten how to survive it.
On New Years Eve we had a situation, something I have not been able to get off my mind. Jason and I were in the middle of a party and all of a sudden I had to completely switch gears and call the on call cardiologist who advised us, my parents, and Charlotte to come in for observation. We left 20 people partying at our house while we were swept back into hospital mode. I always think of Jason and Jake when they come home from work/school. They are not good at switching gears, and that's what all of this is. It's going from your LIFE to SURVIVAL in a matter of minutes. It's getting there on time, it's understanding all of the information being thrown at you, it's watching your most precious beings tortured with needles and wires. We were lucky and en route received a call back that we were in the clear and that if she wasn't experiencing any symptoms we could return to our nights. So we went home to our house full of people and I drank, cranked up the tunes and did the only thing that really calms me, danced. Along with calling to check on Charlotte every hour until 4:30 in the morning. For four days after I stayed up almost all night checking her heart and lung sounds, worried until I finally emailed Dr. L'ecuyer to tell me I could stop worrying. I knew she was fine but it's survival, I hadn't checked her sounds or counted rates in months, and here I was switching gears back three, four months ago in a matter of a day. It's a ton to deal with in a short amount of time, and if I get out of practice my fear is I will forget how to survive. I will crumble. Complacency will kill me.
Tuesday, November 23, 2010
Charley's 2:)
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:)
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:)
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