April 24, 2011

Happy Easter everyone,

I hope all of you celebrated with family or friends and for those of you in Michigan that you were able to get out and enjoy the warmer temps and sunshine this weekend. This date is significant in my mind, strange how some dates you will always remember no matter how much time passes. The ones that aren't significant with your graduation, or wedding, or a birthdate but a date where something so profound happened to you that it is forever etched in your memory. This is one of those for me because today marks the two year anniversary of Charlotte surviving dilated cardiomyopathy and her heart failure. The time moved so incredibly slow that first night two years ago and at this point I'm not even sure we were up in the ICU yet, but I think we had just arrived and were finding out the nightmarish news and prognosis of our beautiful, smiley baby girl who had no idea how sick she ACTUALLY was.

This weekend we were lucky enough to have my brothers home from Chicago and celebrated Saturday with my in laws. It was a gorgeous day, the kids got kites from grandma and grandpa Walsh and it was so nice to walk to the park and watch them fly. As in most days and throughout their passing I notice things related to Charlotte's illness, and sometimes can't brush them off immediately. I pushed her in the stroller to the park, and while my niece Genna (also 2) was hightailing it football field lengths on foot without stopping Charlotte barely walked around for ten minutes before proclaiming that "I tired", "I cold Momma". The call signs that it's time for a break, that she can't keep up. Along with "I watch TV", or "I lay down".

While Alaina, Jake, Alexis flew their kites and Genna walked a mile, Charlotte sat in her stroller bundled in her blanket and although no one else would've known the wiser "I know" she just told me "hey Mom, I'm tired out". These are the daily reminders that your child is sick, the reasons that you can not forget and go on about your life as if all is okay and well. I constantly worry about overdoing it, about pushing her too far, and yet she continues to ask for what she needs, and do with what she can, and NEVER COMPLAINS about it (yet;). She sat there cheering the kids on from her throne, smiling and as excited as if she herself were flying them, controlling their dips and waves, and steady glides.

And I sat there taking pictures of my nieces and children, brothers, sister, and father in law thinking how lucky we are to have each other. To have a day where the weather was beautiful, the wind was perfect and we were there to enjoy each others company even if we didn't say a lot. I haven't felt that at peace in awhile, it's been a long while. My life feels like that kite with dips so low that it feels it might hit the ground, and other times soaring so high that it might touch heaven for a moment. It's hard to live life on these winds of shown uncertainty.

Today we celebrated with my family, my aunts and uncles, cousins and my grandparents in their 80's. Again just standing still for a moment in my own silence listening to the sounds of the house, to the kids going crazy outside. My aunts and uncles talking about their lives, what the kids are up to. Meet the Robinsons in the family room (one of my all time favorite movies). I so often find myself just standing in a place where everyone else is moving and all I can concentrate on is the noise, the joyful, loving noise that we all put forth. The noise that people just don't stop and listen to anymore. I know I noticed it all before this happened to Charlotte, and therefore to us but now it is so prevalent in my life. I'm struggling with all of the wind gusts, rocking us around and sometimes it is so overwhelming I just want to smash on the pavement in a pile of tattered brightly colored fabric. Then at other times it's like perfect silence, I'm just gliding along in beautiful calm where I feel like heaven is watching me whispering that it's all going to be all right.

I am so proud of Charlotte, and Alaina and Jake for who they are. That Charlotte can just sit there watching all of her fellow little people running amuck and not be able to keep up with them but still cheers them on with a smile on her face and joy in her voice as she yells with them. She inspires me. I am so proud that I have family who never concentrates on how sick she is but can take her for a walk to the swings and push her for an hour without even thinking how strange it is that she doesn't request getting off to run around. Or who will go retrieve a ball for her a hundred times not realizing that she can't continuously do it herself all afternoon.

I am so proud of my husband for CONSTANTLY handling all of this life with its incessant wind. For always fighting right along with me to hold this weaved fabric of our lives steady when the gusts pick up. I know it is not easy for him, just as it is not easy for me. I never expected to be challenged in this way, to question every aspect of my being. I know that I am proud to have all of our loved ones and friends who put up with it, who stay even though it's not always a picnic to know us. Seeing those brightly colored kites flying high reminded me so much of how our lives are entwined within each others. How each person or tiny action reflects a strand of thread and as a whole we help keep each other soaring.

I love all of you and will forever be grateful for all that you give me:)

XOXO
Courtney

April 13, 2011 #1

Hello again,

My mom came up last night and I was able to go to the Ronald McDonald house after a Bigby run for tea around midnight, and slept until 9:30 before waking up in a panic when I saw the time thinking I had missed a zillion phone calls from Mom, or the nurse. I was in shock when my phone was empty of call notifications and got up and out of there immediately because I didn't want to miss morning rounds. Mom said Charlotte slept all night too and was in WAY better spirits when I came in this morning. She is still not 100% and I'm still concerned by her lack of eating and small amount of drinking. I can't help but go over and over the things that maybe we missed just in case. It's a curse I tell you, however, it seems the kids never eat or drink good when hospitalized so I'll keep an eye on her over the next day or so and see how she does. Since getting home she's drank some milk and ate a tiny bit of Mrs. Grass soup. I hope her appetite gets better tomorrow.

She slept on the way home from the hospital and as I was talking to my mother in law I kept watching her in the rearview concerned about her color, and touching her hands to make sure they were warm. It is that same feeling I get everytime when in truth, I just want to get the hell out of there after the first night but when they finally do give us the "all clear" I am terrified of not having them to help me. When she woke up in the driveway she cheered "WE'RE HOME" so I know she is happy to be back.

I vacumned the house, cleaned the counters, folded blankets, gave her a bath and started the laundry within the first hour and a half since we were home so I know I am happy to be home too. Its weird the rituals we go through after being away only a short time, the first thing Charlotte wanted was Just Dance 2 on the Wii:) She of course was too exhausted to dance but she sat on the couch and watched the dancer and listened to the music. The next biggest excitement was her bath which she was really excited for but again was so exhausted she just whined and complained through most of it. She finally laid on the little couch with her blankies and watched Kipper until she fell asleep.

Jake came home and seemed happy to see us, he and I chatted about how things were and I begged for a hundred hugs from my guy. He is always the same each time we go through something with Charlotte, he acts totally unaffected and yet his behavior tells a completely different story. He gets more aggresive than usual, some good bear hugs reassured him I think and he seemed better after. Alaina is never very open with how she's feeling either and I know they had to be scared to death in the ED with me all day Sunday. I watched Alaina checking Charlotte's fingers and toes in the car on the way down and yet when we talked about it before they left she said she was fine. I went to pick her up from her drama club this evening thinking she'd be sooo excited to see me but she was just like "what's up mom" like it was any other day. Once I pulled in the driveway I think it hit her because she stopped, looked at me and said "is Charley home?" and when I said yes went running into the house. The only time I heard Charlotte laugh in three days was at her big sister/brother tonight.

The similarities during this stay compared to our first stay almost exactly two years ago are strange. As then Jason had just started his new job literally weeks before our two week stint in the ICU, and this time he started a new job on Monday. Along with that I noticed today that Spring happened while we were away. It was eerie feeling the Spring air today and coming home to buds on my trees and my flowers blooming outside. It felt EXACTLY the same as it did then. Regardless she is home now, safe in her own bed, with Mr. Turtle shining his bright stars on her ceiling (great gift Aunt Nancy:) and Violet the dog sang her to sleep. I really do appreciate all of your emails, texts, facebook comments, phone calls, and comments on these blogs. It may seem ridiculous but just knowing people are there listening (well reading) and caring really lifts my spirits everyday.

I had this wonderful conversation with the chaplain at the hospital I want to write about but it is one of my emotional rants so I will post it seperately for those interested in my rants. That way those of you who just want to know how Charlotte is can skip the second one:)

Goodnight everyone
-C-

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

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-