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
Subscribe to:
Posts (Atom)