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:)

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:)

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

Refresh

Recently I went back not only through this blog but back on my carepages as well and read through my old posts. This has kind of become like a diary and I felt just as embarassed going back through this as I have reading an old junior high diary, YUCK. All that drama;) I realized how the tone of soo many of my posts all revolve around the same themes: extreme worry, fear, sadness, life awareness, and overwhelming emotion to name a few. A lot of them sound the same. And ALL of them are true feelings that I go through everyday, every week, every month.

Charlotte has her heart cath this week and bloodwork to get done beforehand. In the shower today I was thinking about how much I dread these weeks, almost as much as precription refill time which is also on the TO DO list for this week. So needless to say it's going to be a rough week, emotionally and physically because all of this worry just wears me the hell out.

My birthday is Wednesday and Jason surprised me last Thursday with a weekend away for him and I to Chicago (my most favorite place). He has said several times that I got jipped out of my last two birthdays because when I turned 30 I was pregnant, and when I turned 31 I was in the nightmare of my life and nursing Charlotte who 100% refused bottles and only would nurse. It was such a HARD time for me, I was literally slugging through life everyday, and I suppose still am even now to some degree.

My posts revolve around all of that so much, and yet, there has been an incredible amount of joy, grace, and wonderment in my life during all of that time as well. Charlotte is sitting here next to me making an absolute mess with her yogurt and ate eggs, and cheese before this which she has not touched in weeks. When you have a child like her it becomes of the upmost importance to keep her eating anything and everything that is halfway good for her, and more importantly that keeps her weight up. So now that she is toddlerfied, her eating is becoming sporadic and picky which in turn drives US crazy. But the point is SHE IS STILL HERE. She is smiling and laughing. "No" is her favorite word and she mummbles things you don't want her to do or have until you say the word as you're trying to figure it out, and right when you say it she says "okay" all smiley. So she is probably the only 23 month old who eats popcorn (except Alaina of course), and suckers, and gets to watch a sleepy Yo Gabba Gabba episode before she heads to bed.

She messes up Jake's lego worlds constantly and runs when he hears her to escape him. As I'm writing she is sticking a lego man in her yogurt and proclaiming "ewww, gross". She draws on my walls with pens, markers, and pencils that she finds hidden in Alaina's room and consistently breaks a silly band a day of her brother or sisters. She jumps like a maniac on the bed or in her crib, and bosses us around constantly. She dances and sings NON STOP, loves to go down the slide and swing. She is loving and hilarious and her hair is always standing straight up and her clothes stained. Charlotte in turn, is doing EVERYTHING she should be. I am so thankful for that today and tomorrow I will worry about the rest.

So not everyday is consumed with sadness, or fear. Granted those are always underlying tones, most days are filled with amazement at Alaina who received her first letter grade this year and was so proud of not just getting 100%, but 102% for her first "A". Jacob who builds anything, and everything you could ask for out of Lego's, and who can come up with rationalizations for things out of this world. My husband who has the capability to recognize that these have been some tough years for me, and I can appreciate all that he has gone through as well. Charlotte who continues to chug on. I have incredible amounts of thankfullness for my friends and family who keep us above water with all of their help and love. I also feel much hope for our future, and that whatever happens on this crazy, scary, sad, fearful, spiritual, eye opening love fest of our life that we will come out okay.