Nov. 23rd, 2010

Posted Nov 23, 2010 1:52pm

Charley's 2 today:)



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 had a 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 ****, 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:)

Heart Cath 11-4-11

Hi everyone,

I just put a VERY OVER TIRED, OUT OF CONTROL toddler to bed. It required laying next to her in her toddler bed rubbing her ear and telling her that no one was going to hurt her when she woke up. I am really tired and might not make a ton of sense but it's been a bit since I wrote last so bear with me..

First of all the important stuff, her lung and artery pressures are all still normal and her cardiac output is "good" as Dr. Turner put it so we shall avoid the possible transplant talk once again, phew:) As usual I LOVE OUR DOCTORS AND NURSES. Dr. Turner is very laid back, easy going, never seems to be rushed or in a panic and even if he's busy he really takes his time to chat and make us feel comfortable. I never worry about Charlotte's care when he, and his cath team are with her which is a huge relief in the scheme of things..

We were second in line today so things took a little longer than usual to get going. The nurse let her pick out a toy to play with while she waited and she had a great time with the Mr. and Mrs. Potato Head. She took almost all of the initial oral sedation medications but the middle one of three is disgusting and the third med she pretty much spit entirely out. Luckily they give her the important ones first and the last is just an anti-nausea med. IV team never showed to give her an IV so we actually took her up to the cath lab to put it in. Everytime before this she has been pretty well out of it once we got up to the lab but today she was chit chatting with everyone, laid down for her IV and although she tensed up a lot didn't even cry when the nurse did it. Once they gave her the IV sedation she was out in about one minute so Jason and I kissed her and left her in their hands. We got there at 8am and they took her back about 11am. It was probably only a little over an hour when our pager went off and we arrived back to the lab to see her. She was already awake which again is a first, and was crying a bit, still pretty groggy. They apparently had to give her a half more dose of the sedation meds and even that didn't keep her down.

I brought my Biology to study because she has always slept for at least an hour after the procedure but this time she was up and somewhat alert so once in the recovery room she sat on my lap half laying down and we watched Curious George as the groggy, drunk, bossy, and moody Charlotte came down. We have to wait four hours after the procedure and she's supposed to be laying down for most of it but in true Charley fashion that NEVER happens. The hardest part about these days besides the no sleeping the night before, getting up early, not eating or drinking, pokes, etc., is keeping a roving lunatic of a sedated toddler occupied. She can't eat or drink anything from midnight on so you can imagine that on top of being cooperative all morning while being poked, prodded, and moved around in a strange and scary place is enough to send her over the edge.

After four hours it gets maddening, and she by that time is exhausted and pissed off at EVERYTHING. Jason was trying to draw a family of ducks on her magna doodle and he just couldn't get it right and she was throwing a fit, if I moved the DVD player one inch to the right she was throwing a fit and smacking it back into place. Hours of this go on and because we are evil parents we start to just purposely do stuff to tick her off because we might as well laugh at her antics while she is so over tired and out of control. In the car on the way home we kept saying you need a nap as she was slapping and complaining at her Minnie Mouse balloon and she would scream "NO I'M NOT TIRED" at us, but as soon as I started videotaping her she was all quiet and coy in her soft little voice. She's hilarious, that's all I can say for that child, cute, cunning and she sucks everyone around her in.

Dr. L'ecuyer came in to see her and she told him all about Halloween, her Jessie costume, preschool, and CANDY. He said her BUN and creatinine (kidney function) were good, and we upped the dose of one of her meds quite a bit so we'll see what happens with that. Dr. L'ecuyer is awesome, he and Dr. Turner are excellent examples of the team they have there. Again always making me feel at ease that we are at the best place for her, that they are knowledgeable with her disease, answering my unending curiousities about it and still stumped at how well she looks compared to how sick she is. I like that they don't act like they know everything perfectly but that they treat each child differently because each child handles the disease entirely different. Jason and I were driving home and we both agree sometimes they look at her, shake their heads and say "it's amazing when you look at how well she's doing". It kind of chokes me up really, we tend to think these people are God, instead of doing Gods work but it's never perfect science, things never always go according to plan and I'm okay with that. I just know that they care about her and us, are incredibly knowledgeable, and if they don't know something they'll take the time (quickly) to try and figure it out.

Charlotte should have left us a long time ago and I take pride in knowing that the people helping me keep her here work with me, not above me if that makes any sense.

She SO needed a nap and I was shocked that she didn't fall asleep on the ride home. She was over the top hyper by the time we got here. Acting rambuctious, aggressive, a drunk person really but kept jumping, dancing, and climbing as if she were sober so my Mom just tried to corral and grab her up constantly to protect her from herself all evening. At bedtime she just couldn't get settled, was fighting us, and kept asking for cake for some reason. At one point she said she didn't want to go to sleep because she didn't want to get hurt. I'm wondering if maybe she didn't wake up in the lab earlier than expected and that's why they hit her with another half dose of sedative. I hope that's not the case but she's never acted like that before. Regardless, I just laid with her, rubbed her ear, and tried to reassure her that there would be no more ouchies for awhile and definitely not when she woke up tomorrow.


All in all, she was phenomenal as always and everytime we face things like this her strength and endurance never cease to amaze me; and Alaina and Jake's belief that everything will be okay with their sister gives me hope. We laughed because Dr. Turner was saying goodbye and said "nothings going to keep Charlotte down", and while I am still scared to death of the future, and it feels more unease now than ever, I also feel capable more so than I have ever felt before. I have always been told I was a good Mom, a patient Mom, but to be told by her doctors that they aren't sure how she's doing so good is a force unlike any other. Not just for myself and Jason either, everyone of you who read our story, or send me a comment, or continue to be my friend when I'm a raving lunatic. You who ask how she is, or help out with our kids, who pray faithfully, or who give me so much without asking much in return should feel a force as well. For the first time since Charlotte's diagnosis I have gained a sense of girl power unlike anything I've ever experienced before this happened in my life. As most things seem to be, sometimes I'm not sure it's a blessing or a curse but it feels good to have confidence that I can take care of people so well, and that I can help other people see all of the good they have even amidst the bad. I'm not perfect and everyday is a struggle to stay in the here and now, but while I can't control what happens to someone, I can absolutely do my best to care for them while they are here. To encourage them to be a better person, to take better care of themselves, to nurture their spirits, to volunteer any special gift they can. I literally can NOT WAIT to work at this hospital and be part of such an awesome community.

When Jason and I were eating our usual Subway cath lab lunch, I was looking out the window of the hospital thinking of how we got here to this place. How three years ago this hospital, and the Childrens Cardiomyopathy Foundation meant little to nothing to me. Now I sit here a lot of days brainstorming ways I can help them when I get some more free time. It's not just the hospital either, we are all part of so many communities that we don't realize, all of the places where we know our way around, feel comfortable, have friends/family. It is up to us to care for those communities no matter how big or small they are.

When we are there now it's comfortable, we know the drill. We can tell other families where things are, or what elevator to use, share tips and tricks for getting a child through a test, etc. We forgot change for the vending machines and I said "we can go to the 4th floor they have the credit card vending machines", something as simple as that made me feel at home. We are forever connected to it, and the people who not only work there, or frequent it but also to the people who are just starting their journey with it. That is how we take care of each other, we nourish the communities we love, because in many different ways some good maybe some bad they nourish us too. Sometimes in ways we can't always see clearly until we take off our rose colored glasses:)

Love to all of you, thank you for always being here to support me:)

Clinic Visit

Well,, well,, we are one tired bunch of Smith's:) I suppose it was good practice for school starting tomorrow but going to bed at 1am and getting up at 6:30am kicked my butt today. The kids don't seem to chipper either and we've been laying around ever since we got home.

Thankfully Childrens was not a mad house this morning and we were only 10 minutes late this time. Charlotte was a little upset when we went into the EKG room but calmed down with distraction and counting the seconds the test takes. It is the easiest one but she still gets nervous about it, I suppose in her mind any of them could be an echocardiogram and she HATES that ultrasound machine more than anything. Dr. L'ecuyer did his usual exam of listening and feeling her liver to make sure it's not enlarged. Without the echo there isn't anything outright to show what condition Charley is really in but we all agree by her energy level and growth she looks pretty damn good right now:)

Alaina had her echo and was cooperative as always. I brought Charley in with us to show her how well Alaina did and that it doesn't hurt, blah blah;) lol. Charley could care less how "fine" Alaina did, and when I told her she'd have to have her's next time she said "NO I NOT", hahaha.. She was very proud of her sister and gave Alaina praises and high fives on what a "good girl" she was. The doctors looked over Alaina's results and said that her heart is now normal size. So she got the all clear which is always a HUGE RELIEF. Dr. L'ecuyer said she may have been anemic at some point which I guess can cause some dilation. I of course will still worry, and have my non-medical theories about how the year before we had Charlotte Alaina played soccer, danced and was very active and ironically after Charlotte was diagnosed we had the echo's which showed Alaina's dilation. Since then the kids have not done nearly as many extracurricular activities besides running amuck in our yards and now Alaina's growth has caught up to her heart size. Coincidence? I'm not so sure? However I am also very aware of my psychotic ability to worry whether founded on fact or not, but welcome to motherhood people;) It's like trying to maintain sanity at all times and let's face it add in a child with a disease that has a horrible survival rate and well, you might as well book our rooms at mental institutions now.

All in all I will re-register Alaina for dance and I will while gritting my teeth sign her up for soccer if she wishes. And then I will sell whatever I can to buy an at home defibrillator and secretly carry it to games like another CCF mom I know does.

Charlotte was fitted with a 24 hour holter, although this was not the standard before I guess now they will do them every six months to make sure she is not having any pacing or electrical issues that don't show up in the office. She is doing okay but a little more perturbed about the wires and leads than she was last time. Granted I woke her up out of a deep sleep this morning so she's kind of perturbed in general today, a nap would be great for all of us today I think:)

As usual at her last echo they were unable to estimate her heart and lung pressures therefore we will be scheduling her heart catheterization procedure for November. I as usual, am not looking foward to that. I know they are generally safe and there is little risk but obviously the more you have them, it seems your odds would increase of the risk factors. I know it will be fine but my stomach always feels otherwise regardless of what my head says..

So that's all I have for today. Tomorrow we'll mail the holter monitor back and I'm sure Dr. L'cuyer will email me when the results are back so I'll quickly update when I hear something.

The kids start school tomorrow, as do I. I have one biology course this semester but I'm looking forward to having a purpose again and being busy. I hope all of you have had a great summer, and enjoy the onset of fall weather:) I can't wait to start our cider mill tours and jumping in piles of leaves. Pumpkins, Halloween costumes (Charley is going to be Jessie the Cowgirl from Toy Story), and scary ghosts. Ahh, I can't wait:) Love to all of you!

Summer's Over

It's official, starting Wednesday our summer is over. School starts for Alaina and Jake Wednesday and Charley's Meet n Greet for preschool is Thursday. We had an awesome summer, thinking back on it all of the things that I wrote in my last blog about longing to feel safe again are closer than they've seemed in a very long time, or maybe I'm just dealing with things better.

Every night as I dose out Charley's meds I think of how this new set of rules, and adaptations can never be forgotten. Life won't ever truly be 'safe' again, I won't ever be able to completely return to my rose colored glasses but honestly I wouldn't want too either. It's not that I feel 'better' than anyone else but I look around with a much clearer vision about the things in life that are important, and although I still 'want', I am much more apt to take a breath of fresh air and 'wait'. I consistently am watchful of those around me who are impatient, unkind, selfish, judgemental, whiny, or acting out of hatefulness rather than loving acceptance. It kind of pisses me off, ten times a day I want to tell someone our story, or the story of the kids we've lost recently, or the one's who've been saved by the most selfless act on earth 'organ donation'. I want to shake them into just calming the hell down, taking a breath, and listening to what someone else is 'REALLY' trying to say instead of what they 'THINK' the person is saying. It's because of this I realized why it is that I can't shut up about Charlotte. I can't stop myself from being annoying because the message is so substantial, it almost feels like if we don't keep spreading it the world will eat itself alive. The problem is that most definitely, like my own personality, most people do not like being told what to do, and I suppose in my own way these feelings are my own form of being judgemental toward others. I will never give up being judgemental entirely because my evil side has too much fun with it, and of course I still have lots of work to do in my own regard but if we could all just get over ourselves I think we'd see things clearer than ever before;)

I started walking, and doing Zumba over the last few weeks, and I have to admit I think it has helped with my moodiness and overwhelming sense of pressure immensely. More than I ever believed exercising could. On days I don't at least go for a walk I can feel the tension returning and my mind going to the darker places it's remained at for far too long. The other day I took Charley out and went for a walk, Jacob wanted to join so I let him ride his bike. It was really nice watching how he's grown, he doesn't need resting breaks, he can cross the streets a little more safely. And up until he disappeared from my sight scaring the hell out of me for fifteen minutes I felt nostalgic thinking of how big the kids are getting, how easier they are in some ways to take care of. They are changing in big ways especially Alaina. She's turning into a pre-teen right before our eyes, beautiful inside and out but with a little more sass. She's more intrigued than ever in our adult conversations, more opinionated. Two years ago I felt like life for us was over, there was no enjoying every minute, no taking a deep breath and soaking it all in. That is definitely the sense I have gained the most throughout this experience. I can be teasing the kids, watching Jason outside making our world more beautiful like he always does, with mine/Jason families laughing, or whooping it up with our friends and just feel like heaven surrounds us. That feeling has been so randomn these last few years, reserved for the really reflective days. Maybe it's that fall is coming, my favorite season by far. Maybe it's the endorphins from my new health kick, maybe it's letting go of things that were hurting me more than helping. I don't know if it was my keeping it out, or if God just let me be for awhile, I never felt without heaven's presence, but we are truly blessed with so many special and unique people in our lives.

We had a great time this summer going to Traverse City with my parents and brother for a week. The kids just played on the beach and swam all day, we visited with some relatives which is always nice. Jason and I were able to indulge in our favorite annual traditions of girls and guys weekends at our friend Lauri's cottage. We camped at Jellystone in Silver Lake with my whole family and drove our truck out on the dunes to Lake Michigan. My cousins Heather and Dave with their girls were with us and the kids had a great time. We had some major torrential downpours and thunderstorms one night which wasn't great but while Jason fell asleep with the kids my cousins, brother and I had a great time partying to the storm;)

My friends from California the other 'Smith family' were home and their girls and my kids have no recollection that it has been years since they saw each other. They instantly took up where they left off and we had lots of fun on the beach back home and going to Chuckie Cheese. Charley is still talking about it months later.

We attended an event I have been wanting to do for two years now, the Children's Health Night benefitting the Childrens Health Fund for the hospital. The Tigers won and we got to see Papa Grande pitch whom I love!! It was a double bonus night out enjoying the Tigs, and helping a great cause. Doesn't get much better than that.

So while I have continued to battle feelings of the unknown, fear and sadness for what my fellow heart families are going through we definitely made the best of this summer. We stayed busy, we spent lots of time with friends and family, and all of the kids remained healthy and happy. Despite the normal yelling, fighting, tattling, and teaching their baby sister all things inappropriate for a two year old to say and do;) lol. Charley is a constant comedian. She loves everything and everyone as long as it all goes down her way. She is bossy as can be, and makes her opinion decidely known in every situation. She absorbs the fun and vibrance of every situation, and even when she is 'yelling' at us, or 'telling' us what to do it is extremely hard not to crack up at everything she says and does. I am so excited for her to start school, so sad at the same time that I can't control every move she makes for those few hours. I worry that she will push herself too hard to keep up with the other kids, or that there will be an emergency and they won't handle it correctly. I will probably walk out and ball in my car with nerves, and I worry that she will get kicked out for her sassy attitude. I do know however that I adore her teacher, she has had all of the kids at some point and follows Charley's health story. That brings a small comfort in knowing her and I can work together:)

Tomorrow we have a clinic appointment and probably the minute I hit 'post' on this blog I will be worrying about what tomorrow will or won't bring. Alaina is scheduled for an echo and Charley a regular clinic visit with Dr. L'ecuyer but I don't see any signs or have any concerns that she isn't doing well right now. I suspect Dr. L'ecuyer will agree paring any unforseen things like a weight loss which would be hard to fathom as she seems to have grown like a weed this summer. So I will update again tomorrow but for now goodnight:)

Letting go is the hardest part

With the summer sun, hot temperatures and the release of pressure with school being over (for now anyway;), I've been able to focus on life again lately. I keep having this overwhelming sense of panic that I should be doing homework or studying and then it dawns on me that "no wait, I can do whatever I want again, I can relax". This past week helped break the idea in with a nice night out to Greenfield Village where the kids just ran around and played on the hill overlooking the Detroit Symphony Orchestra and waited patiently with bubbles, rolling races, and lemonade for the fireworks to start. We went for pizza beforehand and honestly we don't do much as an entire family anymore so it was refreshing to enjoy the kids and just soak in the sun and atmosphere with them, and then snuggling on the hillside as a family in the dark. We also had a great time at our friends housewarming party, and I was elated to see so many faces that we just don't get to see often anymore. Life is passing us by and it's passing quickly. People that I once saw several times a week, or at least every few weeks I now only see once/twice a year if I'm lucky. I miss so much about their lives, which is why I LOVE facebook because although Jason differs in his philosophies about friendship, once you are a friend to me, or I care about you in anyway I have a tough time letting you go, even if I should.

It seems since Charlotte was born, or Charlotte's been sick her illness has CONSUMED every ounce of my being to the point that lately I'm just sick of myself. It's all I think about, it's all I talk about. I tell strangers in the grocery store, yesterday a guy I was talking to while we pushed our girls on the swings at the park. Anyone who will listen I hear myself telling them and everytime I think "what in the hell am I doing, they don't care". The whole world doesn't need to know that my baby girl is sick, that she might need a heart transplant, that it's changed me along with it. I have allowed it to make me into a better person but also used it as a means to self destruct in some ways. It rules almost every decision I make, go to the park "only if it's a short trip because Charlotte might get overheated", go on vacation "only if Charlotte seems perfect and I know where a hospital is at all times", sign her (or the others kids for that matter) up for extracurricular activities "well what if she gets exposed to germs and ends up not being able to fight some infection", "or something happens and I'm not there". It's overwhelming, it's frustrating, and the worst part is these thoughts, this sick of myselfness will never go away. Life can never rewind to the time when everything felt safe, when we had no real worries, when everything seemed so promising.

I remember in my mid-20's I went through a phase where I felt like I just had too many people in my life and I needed to let some of them go. Whether they were too negative, didn't learn their lessons, we just grew apart, whatever it may be I was becoming overwhelmed with everyone else's problems because as Jason would say I have a bad habit of taking their worries, and cares onto myself. Now here I am in my
30's and I feel like I've become that very person to a lot of people. The one whose always down, or negative, the one who can't pull herself away from what surrounds her. Charlotte getting sick has changed SO much of my thought process, granted I am still very much "ME" the way I think about almost all aspects of life has changed. The way I raise my kids has changed, and I can't guarantee that they are the better for it. The way I approach Jason and I's life is somewhat different, and again better or worse only time will decide.

Her getting sick has also forced me to grasp on to life lines that I shouldn't have. What I wrote over the winter was so true to my heart, I have been grabbing for branches, whether it be food, school, wine, money, writing, or people who have no idea that I am using them as branches (and quite possibly didn't intend on being them for me), it doesn't matter one by one I've been holding on for dear life unable to let them go. As I do, slowly try and regain control over things, or let people go I feel the same hurt that I had these first years flooding back over me and I'm not sure what to replace it with. I'm not sure how to survive all of this without them, these things saved me from myself, they became my friends. Its like replacing a pack of cigarettes that I used to love with something else to try and continue that feeling of having a best friend. I know that sounds ridiculous but to anyone whose been an addict to nicotine they'll understand what I mean. You need a new fix when things get tough, when you're feeling sad, in danger or disappointed.

I'm not sure where I'll go from here, I know I won't give up school, or wine, or writing, and knowing me I'll pick up some more people along the way some to keep and treasure and some to let go of. I just hope I'll also along the way find safety again, time to worry about the stupid stuff:) I know I'll continue using my sick of myselfness to spread the word of the #1 killer of children, and the massive need for organ donors. I know I will focus on becoming a great nurse to other kids like Charley. The light is definitely shining more brightly on the future, but for tonight I have some tears to shed for the things I'm going to try and let go of.

Carepages

Just want to let anyone new to Charlotte's page know that you can read our entire story from the beginning at http://www.carepages.com/carepages/CharlotteSmith. Someday I intend on transferring all of my early updates on her care, and my dealing with all of this over to this blog but who knows when I'll have time for that;)

June 7th, 2011

I am still not sure what to write today, or how to feel, or what to think and it's been two weeks since Charlotte's clinic visit with Dr. L'ecuyer. I'm sorry I haven't written to update all of you but I have been crazy busy. I only have one class this semester but it is a condensed chemistry class and between two days of labs (and lab homework), three days of lectures, quizzes, exams, and homework on top of the kids end of the school year festivities I have been non-stop playing catch up.

I have been trying to figure out how many appointments we've had for Charlotte but can't come up with an exact number. It definitely is around the ballpark of 25-30 appts in the two years since her diagnosis, not a lot compared to many of her heart friends but still enough that continuously hoping for improvement and getting none, starts to weigh on a parent. After 6 months to a year of no improvement we were told not to hope for any, so we prepared our minds to hear the words "no change" at each appointment and tried to force our hearts to feel good about it, because we know the words "she's declined" can come just as easily so we take "no change" and run with it. In truth no matter how prepared we are to hear that Charlotte has had "no change" in her heart function, it is relatively impossible to actually "not hope":)

I am getting better and better at holding off my nerves before appointments. The first year and a half I started obsessing and getting my nerves on edge about a month beforehand. Two Mondays ago, whether it is just experience, or the fact that I'm tearing my hair out busy and don't have time to think, I never really felt nervous. For some reason my stomach always knows what I may not be thinking and I get sick feeling about half way through my drive to the hospital. This time, I was more concerned with how she'd act than what they would find as getting tests done on a particularly feisty toddler is becoming more challenging. She was a nightmare during her previous echo, and then with the hospital stay in March I was on the prowl for new strategies to calm her down, or explain the procedure better. Our child life specialist has had ZERO success in making friends with Charlotte, when she came into the room with a doll during the March hospital stay Charlotte would just tell her to "go home", lol, and not in a nice tone of voice.

My new strategy was turning some of the experience over to her so I didn't carry into the office like I normally do but instead let her walk in by herself with my following behind. Without my "making her do it" I thought it might help to ease her into it herself, and she was fabulous when the nurse instructed her for her height, weight and even her blood pressure which she normally cries through. When we went into the EKG room she got a worried look, started to back out and said "go home now Momma?" I just said we couldn't go home but that I could hold her, I explained it was the sticker test, the tech gave her a toy and boom, she sat down on the table and was a champ. Thankfully, putting the stickers(leads) and wires on and off is the longest part of the test.

Next was the exam room, the NP and a new cardiology fellow came in and did their examinations, she was very talkative and friendly to them. When they told me it was time for her echo my stomach dropped because I was DREADING this. Jason wasn't with me to help occupy her, so I was going this one alone:( However she sat on the bed herself without my holding her on my chest, and besides freaking out a few brief times she allowed the tech to get all of her pictures (up until the arch anyway, then she lost it). Dr. L'ecuyer came in and told the tech he had been watching and thought she was good on the pictures so Charlotte was relieved to be done:) I am so proud of her, I know echo days will continue to be sketchy and I'm sure her moods will vary from appointment to appointment but "yeah for Charley" on this one.


So then came our chat with Dr. L'ecuyer, I was eager to hear what he had to say because the way he sounded when he told the tech that she could finish up and he'd seen enough had a different tone than usual. So we sat down and he said that he was confident in reporting that it seemed her shortening fraction had improved a little. It had been roughly 8-9% over the last two years and today seemed better. Then he waited and took a few seconds pause as I said dumbfounded "wait so you're saying her shortening fraction improved slightly?" "What is it now?" And he said that it was around 15% which brought her from the severe category to moderate. I then said "wait?? Her shortening fraction right?" And he continued to answer the same question at least three more times as I was in shock.

I think I kept waiting for him to say this was a joke, he didn't seem nearly as excited as my heart felt. He finally cracked a smile after my fifth time asking "her shortening fraction right?" and he said "yes, today it's good news". It must be incredibly hard to be a physician that deals with such tragic and heart breaking news so often.

I see it in Dr. Mastropietro too, when they have good news you can see inside they are as excited as you are, but they can't ever let it out because they have to be the realists, or the conservative ones so they can't get too emotional with patients as they know things can always reverse. Not to mention and it really is a shame that I swear they are all terrified of being sued and allowing patients into their emotions might make them vulnerable to saying something that if unfounded or that backfires, could get them in trouble.

If you had seen my face, and him sitting in the room with my calm excitement you'd understand what I mean. I think if I had grabbed his hands and made him dance a jig with me he would've;) It seems their "god complexes" have caught on and now WE EXPECT them to be "god" which is highly irrational and sad. I wish they could rejoice in every triumph just as we, the parents do, but at least they aren't fooling me, I know when they are relieved or happy about something and Dr. L'ecuyer was happy, even if he couldn't dance a jig:)

He also (as do I) knows that in the scheme of things it doesn't mean a whole lot. He knows that things can go up or down at anytime, and he knows that while you might get better, you also might get worse. There are no guarantees in cardiomyopathy, no set paths to tread. I don't care though, for right now I am just going to revel in a small triumph. The point to me is that the medication helped, and the heart can heal if given the right tools even if that's all we ever get. Dr. L'ecuyer said we'll never know if it's the meds or if she would've just improved over time, but I think he and I both know it's the meds. I just don't feel this was caused by a virus in a child that had never been sick. The fact that it took TWO YEARS to see any glimpse of improvement of her heart function also tells me this.

I practically ran to my car, I needed to get to it's solace because I knew tears were coming. There have been countless moments throughout these last two years when although I don't think God in particular healed Charlotte, or can change her course I know that he is near. Or my angels are near, or Charlotte's angels are near. I sat in the parking garage on the 11th floor overlooking Tiger Stadium, Ford Field and the sunlight glittering off a city that everyone says is dead, and I cried the happiest tears I think I've ever had. My eyes were sore and burning for two days because I just couldn't stop crying. She's not healed, she might still require a transplant at some point in her future but she improved. Even today she's not far away from the decision to be listed, I suppose she never will be but with even the tiniest improvement, it means catching a decrease and having that much more time to be well while waiting for a transplant. The last two years have felt like the grim reaper is standing at the end of my driveway just waiting to take her, and my tears are washing him away down the street just a little further.

We are fighting the fight and although I knew not to hope, for some reason lately I have looked at Charlotte and felt her hugs and wondered if she might improve. Her spirit is a strong one (lol, literally) and although I know this fight will be our life I don't feel like the other shoe is going to drop at any moment anymore. I have hope, and I have faith that she can have a long and wonderful life. By far this has been the toughest time of my life, of my marriage, of my motherhood but I think I might survive it now, just a little hope goes a long way:)

Goodnight everyone, I hope this all makes sense as I haven't slept much lately. Thank you for continuing to pray for us, and keep us in your thoughts. Thank you for passing on the word that organ donation is worth it.
XOXOXO.