Wow, did I just write that?
My baby, my beautiful, innocent little girl.
Right now, when you look at me with those big blue eyes, it's hard for me to imagine the day when you won't be so innocent anymore. It's very hard, and I have to admit that I'm struggling with something that, twenty years ago, I would've rolled my eyes over, had my mother expressed the same struggle.
That boy you're dating? I may like him. I may even love him. I may hope that you marry him and the two of you live sixty or seventy years together, with ten kids and a hundred grandkids. He may be the 'son I never had'.
But let me admit to you right now: Deep down, I want to throttle him for what I know is going to happen. Or may have already happened. Because remember, Ally, that I will always be your mother. You will always be my baby. My sweet, innocent angel who right now is still prancing through the life stage that comes before eating the fruit from the Tree of Knowledge.
You don't have a clue what sex is, and I like it that way. Your mind and body are pure, and I like it that way. There is a deep, instinctive part of me that wishes you could stay that way forever.
Of course I know you won't. I know that one day (much, much too soon), your eyes will be opened to the wide world of boys and hormones and feelings you've never imagined experiencing, and they will overwhelm the crap out of you for a long time. I know, it happened to me.
You'll get your first crush and when his eyes meet yours, it'll set off butterflies in your stomach, your heart will skip a beat, you'll want to melt into a puddle.
Eventually some little boy will hold your hand and you'll think nothing has ever been that exciting... until one of them kisses you, and that will blow your mind. And then one will tell you he loves you, and you'll feel like you're going to expire on the spot.
It'll happen so fast, kid. You have no idea. It'll seem like an eternity to you, but for me? I know that if I blink after clicking "publish" on this post, it'll be happening already.
You're going to grow up and your body will change, as will those of the boys around you. You're going to start wanting things, feeling curious about things. You're going to think about sex a long, long time before I'm ready for you to be thinking about it, and good Lord, what that does to my mommy heart.
Here's the thing, baby girl. Lately I have read article after article, blog post after blog post, written by parents, either aimed at other parents, at their children, or at the puberty-stricken teenage peers of their children.
Many of them are aimed at young girls, and the behavior of so many young girls in the modern technology age. Social media, text messaging, snapchat... you name it.
Ally, so help me God, if I catch you taking provocative pictures of yourself and sending them to anyone, anywhere, I will lock you in your bedroom with no phone, no computer, no nothing for the rest of your life.
....
No, I won't. Not for the rest of your life. But I will be upset, and disappointed in you, and you'll be grounded for an indeterminate amount of time. Why? Because I did not incubate your little person for 39 weeks and then spend the next ___teen years carefully raising you, loving you, teaching you, and protecting you just for you to turn around and disrespect yourself enough to encourage boys to objectify you that way.
Nobody on earth loves you as much as I do, Ally, and nobody ever will. Whatever lucky little punk wins your heart and marries you better spend the rest of his life trying to achieve that goal, but I'm telling you now, he won't. And so, on that authority, I am telling you that you not only deserve to be treated with respect, but you should insist on it. Demand it. In order for you to get it, you have to first have it for yourself.
Teenage boys, and men in general, are visual creatures. They're hard-wired that way, to See it and Want it. Much, much more so than girls. You might see something and want it, but you're not driven by that the way boys are.
I don't mean that if you're on the beach in a bikini, any boy within sight should be thinking about you as a sexual receptacle (hint: you're not). They will See, and they will Want. And it'll make you feel good, too. Attractive, desired.
That's fine. Normal, even (even though I just visibly winced at the thought). What you're experiencing is a part of life, it's a rite of passage from childhood into adulthood. It's hard, it's confusing, and these days I know it's far too easy to believe that you're ready for adult experiences years before you'll actually be emotionally ready for them. It's okay that you want boys to notice you, it's okay that you want them to be attracted to you, and yes, it's fine for them to be attracted to you.
What is not fine is if he thinks that all you are is something to be desired. What is even more not fine is if you make him think that's all you are.
My generation is not inclined to take personal responsibility for our actions, and yours will be even less inclined. You, however, are expected to take full personal responsibility.
Is rape the victim's fault? No, it is not, ever. I don't care if the girl pranced naked up to the guy and sat on his lap. He's just as capable of controlling himself as anyone. No means no, and there's no such thing as "She was asking for it."
Was she being stupid for prancing naked up to a guy she didn't want to have sex with and sitting on his lap? Yes. She was. Because not everyone will control themselves.
You are expected to control yourself. You are expected to carry yourself with dignity and self-respect. You're expected to see, or learn, the difference between boys who like you for you and ones who like you because you're willing to act like you have no self-respect.
It's not okay for him to call you a slut or a whore, but it's also not okay for you to act like one.
It's not okay for him to look at you and only think about what's between your legs, but it's up to you to be more than what's between your legs.
You are smart. You are so, so funny. You are sweet and kind and strong-willed and beautiful, and I'm amazed every day by the fact that God gave you to me to raise. You drive me crazy with your stubborn spirit, but I love that about you, too, because I know that one day, when it's no longer something I have to battle with in order to raise you right, it's going to be an invaluable tool, a huge advantage in your life.
Do I think it's ridiculous that people expect girls to take complete responsibility for the thoughts of young men? Absolutely. Young men should learn self-control and how to rein in their libido when they see girls stupidly disrespecting their bodies.
Don't disrespect your body, Ally, because it's more than that. It's disrespecting your entire self, and as the person who loves your entire self so much more than you'll ever know (until you have your own baby), I am not okay with that.
I love you, little face.
Mommy.
Thursday, September 5, 2013
Sunday, January 6, 2013
2012
Dear readers,
I realize I stopped mid-story with the tale of Ally's surgery. I got sidetracked. It happens - a lot - and life got busy and there's a lot more that happened that I haven't passed along. But right now, I need to write a letter to my daughter. I hope you understand.
Dear Ally,
We've had quite a year.
One year ago right now we had no idea what was lurking beneath the surface. Daddy and I had just a month or so before been talking about how lucky we were, how healthy you'd been and what a blessing it was.
Here's something 2012 taught me: there is a blessing in everything. It's not always easy to see, but it's there. There's a reason for it, there's a silver lining.
As scary as your diagnosis was (and still is) and as much as the stress in the first half of the year felt like too much to cope with, we were unbelievably lucky to find out when we did, how we did.
Dr. Lau told us that you weren't his youngest patient with HCM, but you were close. He told us you weren't the most severe case among his patients, but you were close. The fact is that if it hadn't been for the heart murmur, we wouldn't have known anything was wrong at all, and the fact that your heart murmur was unrelated to the HCM just drives the point home that much stronger. If you hadn't had the heart murmur, we would be going about life as usual without knowing there was a ticking time bomb in your chest.
We could've been one of those families who don't know anything is wrong until one day everything is wrong, maybe too late to do anything about it. I can't even begin to fathom what that would be like, to be sitting in the stands watching you play soccer or softball or whatever physical activity you chose, only to have the world stop turning when you collapsed from a heart attack at an age where no one should be collapsing from anything except giggles.
We are so, so lucky. And you, my sweet, wild angel, are just amazing.
You're five years old now, but eight or so months ago you were four years old in an operating room with a machine doing your living for you. Three times, they stopped your heart to cut on it. Hours and hours we spent, our own hearts stopping every time they called us up to let us know your progress. I can't begin to describe to you how that felt. I would've traded places with you without a second thought. I would've given you my heart if I could have, just so you would never have to go through what you went through.
Five days in the hospital, going through things you didn't understand. Five weeks recovering before you could go back to playing with your friends like a normal kid your age.
You bounced back so quickly, scaring me to death by running and jumping and playing when your sternum was held together by wire and your chest by stitches. They warned me that it would be that way, that two weeks post-op you'd be climbing the walls, and it was true.
Over eight months later, you have a device implanted in your stomach that will shock your heart if it tries to fail. That was a good decision, because now at least I know we have that. Now I don't have to rely on my CPR training to keep you alive, because honestly, when it comes to you, I am in no way rational or objective. You are everything to me.
Friday was your great-grandmother's birthday. She's been gone for six weeks, but would've been 89 years old, and she's been such a big part of your life that it breaks my heart that you don't have her anymore. When you tell me she's in heaven with God, it's bittersweet for me.
You'll remember Granny. That's a silver lining. You won't get to learn from her the way I did, won't know her as an adult, and that makes me sad but realistically I've always known that would be the case. She is your *great* grandmother, and she was already well into her 80s before you were born.
You don't remember Pawpaw beyond the concept of him, and of course you don't remember Noni. These are things that are hard for me, as your mother, because I know what you're missing out on. Everything has changed in my own life so very much in the last five years, everything is different, and it's disorienting for me but I have to remember that this is your normal. This is your life, what we have here.
I'm trying, really hard, to make it a happy one. I want you to know that.
You're so smart, so energetic (could you back it down a notch, please? Mommy still worries about your heart), so creative and imaginative. You love to draw, love to read books, love to pretend you're a puppy.
You never stop chattering, rarely stop moving. You're independent but you still need me, too. You ask hundreds of questions a day - literally - and sometimes I want to lock myself in the closet just to get a moment's peace. You're five years old and this is normal, and once this stage has passed I'll miss it just like all the others.
You're so funny, too. You make me laugh all the time, even when everything you say ends with "..right, Mommy?", and I hope that when you're grown you will remember the laughter and not the times when Mommy got frustrated with you, when my patience was worn thin, when I simply could not answer another. Single. Question.
I hope you remember the moments like today, when we snuggled up in bed and had a conversation about whether or not God is real, and how He manages to be everywhere at one time.
I hope you remember helping Daddy make dinner, shaking your head and laughing at him when he thought you were doing something wrong but you were actually doing it right.
I hope you remember going to the park and the zoo and the train place in Cincinnati. I hope you remember how much you love pre-school and the friends you've made there.
But the truth is, Ally, I hope you remember what you went through this year, because it's shaped all our lives so completely, and you pulled through it like a champ. I am so very proud of you, and I love you so very much.
-Mommy
I realize I stopped mid-story with the tale of Ally's surgery. I got sidetracked. It happens - a lot - and life got busy and there's a lot more that happened that I haven't passed along. But right now, I need to write a letter to my daughter. I hope you understand.
Dear Ally,
We've had quite a year.
One year ago right now we had no idea what was lurking beneath the surface. Daddy and I had just a month or so before been talking about how lucky we were, how healthy you'd been and what a blessing it was.
Here's something 2012 taught me: there is a blessing in everything. It's not always easy to see, but it's there. There's a reason for it, there's a silver lining.
As scary as your diagnosis was (and still is) and as much as the stress in the first half of the year felt like too much to cope with, we were unbelievably lucky to find out when we did, how we did.
Dr. Lau told us that you weren't his youngest patient with HCM, but you were close. He told us you weren't the most severe case among his patients, but you were close. The fact is that if it hadn't been for the heart murmur, we wouldn't have known anything was wrong at all, and the fact that your heart murmur was unrelated to the HCM just drives the point home that much stronger. If you hadn't had the heart murmur, we would be going about life as usual without knowing there was a ticking time bomb in your chest.
We could've been one of those families who don't know anything is wrong until one day everything is wrong, maybe too late to do anything about it. I can't even begin to fathom what that would be like, to be sitting in the stands watching you play soccer or softball or whatever physical activity you chose, only to have the world stop turning when you collapsed from a heart attack at an age where no one should be collapsing from anything except giggles.
We are so, so lucky. And you, my sweet, wild angel, are just amazing.
You're five years old now, but eight or so months ago you were four years old in an operating room with a machine doing your living for you. Three times, they stopped your heart to cut on it. Hours and hours we spent, our own hearts stopping every time they called us up to let us know your progress. I can't begin to describe to you how that felt. I would've traded places with you without a second thought. I would've given you my heart if I could have, just so you would never have to go through what you went through.
Five days in the hospital, going through things you didn't understand. Five weeks recovering before you could go back to playing with your friends like a normal kid your age.
You bounced back so quickly, scaring me to death by running and jumping and playing when your sternum was held together by wire and your chest by stitches. They warned me that it would be that way, that two weeks post-op you'd be climbing the walls, and it was true.
Over eight months later, you have a device implanted in your stomach that will shock your heart if it tries to fail. That was a good decision, because now at least I know we have that. Now I don't have to rely on my CPR training to keep you alive, because honestly, when it comes to you, I am in no way rational or objective. You are everything to me.
Friday was your great-grandmother's birthday. She's been gone for six weeks, but would've been 89 years old, and she's been such a big part of your life that it breaks my heart that you don't have her anymore. When you tell me she's in heaven with God, it's bittersweet for me.
You'll remember Granny. That's a silver lining. You won't get to learn from her the way I did, won't know her as an adult, and that makes me sad but realistically I've always known that would be the case. She is your *great* grandmother, and she was already well into her 80s before you were born.
You don't remember Pawpaw beyond the concept of him, and of course you don't remember Noni. These are things that are hard for me, as your mother, because I know what you're missing out on. Everything has changed in my own life so very much in the last five years, everything is different, and it's disorienting for me but I have to remember that this is your normal. This is your life, what we have here.
I'm trying, really hard, to make it a happy one. I want you to know that.
You're so smart, so energetic (could you back it down a notch, please? Mommy still worries about your heart), so creative and imaginative. You love to draw, love to read books, love to pretend you're a puppy.
You never stop chattering, rarely stop moving. You're independent but you still need me, too. You ask hundreds of questions a day - literally - and sometimes I want to lock myself in the closet just to get a moment's peace. You're five years old and this is normal, and once this stage has passed I'll miss it just like all the others.
You're so funny, too. You make me laugh all the time, even when everything you say ends with "..right, Mommy?", and I hope that when you're grown you will remember the laughter and not the times when Mommy got frustrated with you, when my patience was worn thin, when I simply could not answer another. Single. Question.
I hope you remember the moments like today, when we snuggled up in bed and had a conversation about whether or not God is real, and how He manages to be everywhere at one time.
I hope you remember helping Daddy make dinner, shaking your head and laughing at him when he thought you were doing something wrong but you were actually doing it right.
I hope you remember going to the park and the zoo and the train place in Cincinnati. I hope you remember how much you love pre-school and the friends you've made there.
But the truth is, Ally, I hope you remember what you went through this year, because it's shaped all our lives so completely, and you pulled through it like a champ. I am so very proud of you, and I love you so very much.
-Mommy
Tuesday, May 22, 2012
Mending Broken Hearts (pt 2)
Wednesday, April 25th
By the time we got in to see Ally on the day after surgery, they'd extubated her and brought her off the sedatives, so she was awake. She had been for a while, too, almost two hours, and honestly that broke my heart a little, knowing she'd woken up and Mommy and Daddy weren't there. She was sitting up, eating ice chips and watching the Disney channel when we were allowed in, and the moment she saw us, she started to cry.
The nurses (such amazing, fabulous nurses!) told us that she'd woken up and immediately said "I want someone to hold me, and I want some Dr. Pepper."
So Nurse Keri (Carrie? My memory is horrible) went to the vending machine and got her some Dr. Pepper, then crawled up on the bed with her to snuggle.
Poor little thing. She was afraid to move with all those tubes and wires everywhere, and she didn't understand why we couldn't hold her. I have to admit that my heart couldn't quite understand it either... I just wanted to hold my sweet baby and it was hard to find anywhere that I could even touch her. Stroking her hair seemed to calm her down when she'd get upset.
The doctors kept coming by to check on her and tell us that she was doing well, they were very pleased. After the bleeding incident from the night before, which, I grant you, scared us half to death, she started recovering very well and quickly. She was such a trooper! I can't imagine how scary it must be to wake up in the ICU when you really have no idea what's going on, surrounded by strangers and unable to move around or, especially in my little snugglebug Ally's case, have someone hold you.
A wonderful lady named Jane Love stopped by and introduced herself as a Child Life Specialist. She asked what Ally likes to do, and that same day had a TV and DVD player moved into Ally's corner of the CICU, with DVDs of Tangled and Bob the Builder for her to watch. She also brought by an iPad for Ally to play with, coloring books, and stickers. She told us about the pediatric floor where Ally would spend the rest of her stay after being discharged from Intensive Care, about the playroom with toys and activities to keep her entertained.
Her Wednesday night nurse played beauty shop overnight when Ally started getting upset and Al and I were sleeping.
The entire staff, I really can't say enough about. There was never a time when I felt like Ally wasn't receiving care above and beyond, and us too!
Honestly, the only complaint I have is that they wouldn't let me steal the baby in the bed next to Ally (more on that later). I suppose there are some legal 'guidelines' about that, and it's probably frowned upon, but whatever.
By the time we got the word that Ally would be moved out of the CICU, she'd had one IV, one chest tube, and the heart cath removed, and I think out of everything that was the worst for her. There have been several times since then that I've had to assure her that nobody was taking out anymore tubes. I guess it hurts. :(
It was bittersweet, leaving that unit. I can't express how scary it is to see your child in that condition, but knowing that she was there with someone watching her every minute, steps away if something went wrong or if she was upset or sick, it was a huge comfort. I knew she'd be well cared for on the Peds unit, but still, it was hard to let go, knowing we were even more responsible for her care once we left there.
Those nurses and doctors are truly amazing. I can only imagine what kind of strength it takes to just get through your workday somewhere like that. It definitely takes a certain kind of person to do that kind of job, and I am so very, very thankful to each one of them.
To be continued... again...
Tuesday, May 1, 2012
Mending Broken Hearts (pt 1)
Seven days post-op.
Oh, where to start trying to cram everything from the last week into words?
I'll start with talking to Ally about what was to come, which is a teeny bit difficult considering she's four. How do you explain open-heart surgery to a four year old?
Fortunately someone somewhere out there has thought of this, and we found a few articles/blog posts with suggestions based on age. For a 3-4 year old, the almighty They recommended keeping it simple (duh) and only telling the child the day before. Long enough to let them process, not so long that they might forget or freak out.
I still don't know how much she understood, but we asked her if she remembered the doctors taking pictures of her heart and explained that they had seen that her heart wasn't working the way it was supposed to. We told her that the doctors were going to fix her heart, that we would be sleeping at the hospital for a little while, and that Mommy and Daddy would stay with her the whole time. She didn't get upset, but again, I'm not sure she really understood much of it. Who can say?
5AM Tuesday morning, we checked in at UAB and were sent up to the fifth floor, to wait. Then we were sent into pre-op, to wait. And wait and wait.
Ally was upset when we first arrived. Nervous and afraid about all the doctors and nurses, until Reggie the PCT found some latex gloves, blew them up into balloons, and drew funny faces on them. As our family started trickling in, Ally played with the balloons, hitting them all over the tiny room. Her anesthesiologist (Dr. Anderson, I believe) came in a few times, and after getting hit in the head by balloons once or twice, he started playing with her.
Ally was relaxed and happy while we waited (and waited and waited) on what we grew to refer to as "Kirklin Time".
A little over half an hour after surgery was supposed to start, Ally was given Versed to relax her, and I lay down on her bed with her, holding her until she fell asleep. The family filed out, leaving me crying over my sleeping daughter, until they came and said it was time to go. I can say without a doubt that I have never had to do anything as difficult as peeling myself off that gurney and letting them take her away, wondering if we were making the right decision after all.
An hour later, we got the update that surgery had begun.
My brother's mother-in-law is a nurse in the CICU at UAB, and she made sure she was on the schedule for that day (God bless you, Robbie), so as we waited and she had opportunities, she'd check on the progress and come out to tell us what was going on and, more importantly, that Ally was okay. She also brought out and introduced us to the nurses who would be responsible for Ally once she was out of surgery and moved into the CICU.
The surgery lasted seven and a half hours, easily the longest seven and a half hours of my life. Ally was put on and taken off bypass (heart/lung machine) three times.
The first time was what we knew would happen. Her heart was stopped, and the septal myomectomy (removal of part of the enlarged heart muscle) was performed. When that was finished, Dr. Kirklin took her off bypass to see how this would affect the Mitral Valve regurgitation. He wasn't satisfied with it, so he put her BACK on bypass and put a stitch in the Mitral Valve, and took her off again.
This is when Dr. Kirklin decided to flex his cardiothorasic surgeon genius muscles and put her back on bypass to go farther into her heart (mid-atrial something-or-other) to remove even more obstruction. Originally there had been no plan to do this - I don't even remember anyone mentioning it before the surgery - because it's highly complex and difficult to reach that far through her itty bitty valve.
Finally, after six hours or so, Dr. Kirklin finished up his part and left her in the hands of Dr. Dabal for the ICD part of the surgery, and left the OR (in theory) to come talk to us. At this point, we didn't know all of the above, in spite of Robbie doing her best to keep us informed. The information desk had been paging us frequently (sometimes to say "Everything's fine".... REALLY? Don't give me a heart attack like that, people) but I seriously doubt that any number of informative reassurances would've made a difference in how it felt to hear that the doctor needed to speak with us, without knowing WHY she'd been on bypass three times.
I mentioned the phrase "Kirklin Time" earlier, and to be honest it became the phrase of the day. Considering he estimated surgery time to be half of what it actually was, it was a good thing that we were warned - several times - that he just simply does not have any concept of time when he's in the operating room. I find that encouraging, because in my experience that means you enjoy your work. He's so focused on what he's doing that he's not watching the clock.
As it happens, he's not big on watching the clock any time, so we waited in the consultation room. Robbie went looking for him, reminded him we were there. When that didn't work, Dr. Kirklin's wife (yes, his wife) called him and said "You've kept them waiting long enough, Jim." and that was motivation enough to get him moving.
Fortunately, it was all good news. In fact, Dr. Kirklin told us that the initial goal had been a 50% reduction in the obstruction, and he'd successfully reduced it by 80%. Yay!
Just to throw you a few more numbers, the odds that she'll have to have this particular surgery again are only 10%, so that's good news. She WILL have to have the ICD replaced in 8-10 years when the battery starts to run out, but that - unless I am mistaken - is an outpatient procedure, maybe a two-inch incision. Not that big a deal.
Several people have asked me if that means no more heart surgery for her, and no, that's not what it means. The HCM and the obstruction they removed last week are related but that doesn't mean that having this surgery has fixed her HCM. The only fix for it is a heart transplant, and realistically that could someday be the course of action for her. For now, however, the reduction of the obstruction, the ICD, and keeping her physical exertion to a minimum are the best way to keep her safe.
So after seven and a half hours in surgery, my baby girl was brought into the CICU and we were allowed in to see her.
Two chest tubes, IVs in each hand and one in her neck, a breathing tube, heart catheter, lead wires, blood pressure cuff, blood oxygen monitor, and an incision from the base of her neck down to just a couple of inches above her bellybutton... it's extraordinarily difficult to see your child looking that way.
It's very, very hard.
Our family came in to see with their own eyes that she was okay - tubes and wires notwithstanding - and then slowly started filing out again, headed home after a very long day of hospital waiting room waiting.
After most of the family left, Al and I headed down to the cafeteria with my parents to eat something for basically the first time all day. I'd taken exactly two bites of my food when my cellphone rang, and it was Ally's nurse.
"Where are you?" She asked me. I told her we were in the cafeteria, and then she gave me a heart attack by saying "I'm going to need you to come back up to the unit... right away. We might be going back into the OR."
Which of course is the last thing you want to hear.
As it turns out, the bleeding from Ally's chest tubes had not slowed the way it should have by that point, and Dr. Kirklin felt he needed to take her back into surgery to locate and stop the bleeding. While everyone assured us it was a strictly surgical problem and that she was in no immediate danger, the heart of a parent can't take that for face value.
My brother and sisters-in-law turned around just as they were almost home, and came back to the hospital.
We watched and waited while the surgical team was called back in from their homes - Dr. Kirklin's surgical nurse was on her way out the door to see her favorite comedian when she got the page - and I sent out an update and a call to prayer to my family, friends, and coworkers. They forwarded it on to others and then those people forwarded it on to still others, until who knows how many people across the country were praying for her.
In literally fifteen minutes, just as the doctor and surgical team started gathering in the CICU, the bleeding stopped almost completely. They were all stunned. It just simply should not have happened that way, going from that much bleeding to right down to where it was supposed to be. The attending physician looked at my husband and I and said "Y'all are praying, aren't you?"
Oh yes, but not just us.
Finally, after Dr. Kirklin made the call that we didn't need to go back into surgery after all, I sent out an update via text message that it was a false alarm.
My friend Kim responded saying: "Well now y'all are just fishing for prayers! I sent out a mass text to my bible group and then you said false alarm! False alarm, or quick prayer power? Who knows?!"
Based on the reaction of the nurses and doctors... it wasn't a false alarm. It was just a miracle.
Man, what a day.
(to be continued.)
Oh, where to start trying to cram everything from the last week into words?
I'll start with talking to Ally about what was to come, which is a teeny bit difficult considering she's four. How do you explain open-heart surgery to a four year old?
Fortunately someone somewhere out there has thought of this, and we found a few articles/blog posts with suggestions based on age. For a 3-4 year old, the almighty They recommended keeping it simple (duh) and only telling the child the day before. Long enough to let them process, not so long that they might forget or freak out.
I still don't know how much she understood, but we asked her if she remembered the doctors taking pictures of her heart and explained that they had seen that her heart wasn't working the way it was supposed to. We told her that the doctors were going to fix her heart, that we would be sleeping at the hospital for a little while, and that Mommy and Daddy would stay with her the whole time. She didn't get upset, but again, I'm not sure she really understood much of it. Who can say?
5AM Tuesday morning, we checked in at UAB and were sent up to the fifth floor, to wait. Then we were sent into pre-op, to wait. And wait and wait.
Pre-Surgery chest
Ally was upset when we first arrived. Nervous and afraid about all the doctors and nurses, until Reggie the PCT found some latex gloves, blew them up into balloons, and drew funny faces on them. As our family started trickling in, Ally played with the balloons, hitting them all over the tiny room. Her anesthesiologist (Dr. Anderson, I believe) came in a few times, and after getting hit in the head by balloons once or twice, he started playing with her.
Silly Balloony
Ally was relaxed and happy while we waited (and waited and waited) on what we grew to refer to as "Kirklin Time".
Ally and Shaun the Sheep, all prepped for surgery.
A little over half an hour after surgery was supposed to start, Ally was given Versed to relax her, and I lay down on her bed with her, holding her until she fell asleep. The family filed out, leaving me crying over my sleeping daughter, until they came and said it was time to go. I can say without a doubt that I have never had to do anything as difficult as peeling myself off that gurney and letting them take her away, wondering if we were making the right decision after all.
An hour later, we got the update that surgery had begun.
My brother's mother-in-law is a nurse in the CICU at UAB, and she made sure she was on the schedule for that day (God bless you, Robbie), so as we waited and she had opportunities, she'd check on the progress and come out to tell us what was going on and, more importantly, that Ally was okay. She also brought out and introduced us to the nurses who would be responsible for Ally once she was out of surgery and moved into the CICU.
The surgery lasted seven and a half hours, easily the longest seven and a half hours of my life. Ally was put on and taken off bypass (heart/lung machine) three times.
The first time was what we knew would happen. Her heart was stopped, and the septal myomectomy (removal of part of the enlarged heart muscle) was performed. When that was finished, Dr. Kirklin took her off bypass to see how this would affect the Mitral Valve regurgitation. He wasn't satisfied with it, so he put her BACK on bypass and put a stitch in the Mitral Valve, and took her off again.
This is when Dr. Kirklin decided to flex his cardiothorasic surgeon genius muscles and put her back on bypass to go farther into her heart (mid-atrial something-or-other) to remove even more obstruction. Originally there had been no plan to do this - I don't even remember anyone mentioning it before the surgery - because it's highly complex and difficult to reach that far through her itty bitty valve.
Finally, after six hours or so, Dr. Kirklin finished up his part and left her in the hands of Dr. Dabal for the ICD part of the surgery, and left the OR (in theory) to come talk to us. At this point, we didn't know all of the above, in spite of Robbie doing her best to keep us informed. The information desk had been paging us frequently (sometimes to say "Everything's fine".... REALLY? Don't give me a heart attack like that, people) but I seriously doubt that any number of informative reassurances would've made a difference in how it felt to hear that the doctor needed to speak with us, without knowing WHY she'd been on bypass three times.
I mentioned the phrase "Kirklin Time" earlier, and to be honest it became the phrase of the day. Considering he estimated surgery time to be half of what it actually was, it was a good thing that we were warned - several times - that he just simply does not have any concept of time when he's in the operating room. I find that encouraging, because in my experience that means you enjoy your work. He's so focused on what he's doing that he's not watching the clock.
As it happens, he's not big on watching the clock any time, so we waited in the consultation room. Robbie went looking for him, reminded him we were there. When that didn't work, Dr. Kirklin's wife (yes, his wife) called him and said "You've kept them waiting long enough, Jim." and that was motivation enough to get him moving.
Fortunately, it was all good news. In fact, Dr. Kirklin told us that the initial goal had been a 50% reduction in the obstruction, and he'd successfully reduced it by 80%. Yay!
Just to throw you a few more numbers, the odds that she'll have to have this particular surgery again are only 10%, so that's good news. She WILL have to have the ICD replaced in 8-10 years when the battery starts to run out, but that - unless I am mistaken - is an outpatient procedure, maybe a two-inch incision. Not that big a deal.
Several people have asked me if that means no more heart surgery for her, and no, that's not what it means. The HCM and the obstruction they removed last week are related but that doesn't mean that having this surgery has fixed her HCM. The only fix for it is a heart transplant, and realistically that could someday be the course of action for her. For now, however, the reduction of the obstruction, the ICD, and keeping her physical exertion to a minimum are the best way to keep her safe.
So after seven and a half hours in surgery, my baby girl was brought into the CICU and we were allowed in to see her.
Two chest tubes, IVs in each hand and one in her neck, a breathing tube, heart catheter, lead wires, blood pressure cuff, blood oxygen monitor, and an incision from the base of her neck down to just a couple of inches above her bellybutton... it's extraordinarily difficult to see your child looking that way.
It's very, very hard.
Our family came in to see with their own eyes that she was okay - tubes and wires notwithstanding - and then slowly started filing out again, headed home after a very long day of hospital waiting room waiting.
After most of the family left, Al and I headed down to the cafeteria with my parents to eat something for basically the first time all day. I'd taken exactly two bites of my food when my cellphone rang, and it was Ally's nurse.
"Where are you?" She asked me. I told her we were in the cafeteria, and then she gave me a heart attack by saying "I'm going to need you to come back up to the unit... right away. We might be going back into the OR."
Which of course is the last thing you want to hear.
As it turns out, the bleeding from Ally's chest tubes had not slowed the way it should have by that point, and Dr. Kirklin felt he needed to take her back into surgery to locate and stop the bleeding. While everyone assured us it was a strictly surgical problem and that she was in no immediate danger, the heart of a parent can't take that for face value.
My brother and sisters-in-law turned around just as they were almost home, and came back to the hospital.
We watched and waited while the surgical team was called back in from their homes - Dr. Kirklin's surgical nurse was on her way out the door to see her favorite comedian when she got the page - and I sent out an update and a call to prayer to my family, friends, and coworkers. They forwarded it on to others and then those people forwarded it on to still others, until who knows how many people across the country were praying for her.
In literally fifteen minutes, just as the doctor and surgical team started gathering in the CICU, the bleeding stopped almost completely. They were all stunned. It just simply should not have happened that way, going from that much bleeding to right down to where it was supposed to be. The attending physician looked at my husband and I and said "Y'all are praying, aren't you?"
Oh yes, but not just us.
Finally, after Dr. Kirklin made the call that we didn't need to go back into surgery after all, I sent out an update via text message that it was a false alarm.
My friend Kim responded saying: "Well now y'all are just fishing for prayers! I sent out a mass text to my bible group and then you said false alarm! False alarm, or quick prayer power? Who knows?!"
Based on the reaction of the nurses and doctors... it wasn't a false alarm. It was just a miracle.
Man, what a day.
(to be continued.)
Monday, April 23, 2012
Bigger Than This
As of right now, we have to be at the hospital in 29 hours.
Not long after this diagnosis came about, I was struggling (obviously), and had just begun a Bible study with my fellow nursery staff members. The message in our very first session hit home with me, and as I was driving home I was praying for my baby girl. The words that came into my head surprised me, if only because I hadn't really considered it this way before.
"I love her enough to give my life for her. You love her enough that you already did."
... I know, right?
**
Today was my last day of work until May 9, and following our staff meeting, my coworkers gathered around me to pray for Ally and for us as we're facing this giant unknown, and then they loaded me down with gifts to make the hospital stay and recovery easier on everyone. I've said the word too many times for it to come close to describing how I feel, but I'm overwhelmed. The generosity, the spirit of love and support, the assurances that so many people are willing and even eager to do whatever they can to help, it's just too much for me to process and comprehend.
Wow.
It's not just my coworkers who have responded so heartily during this struggle, either. Aside from family and friends, I'm blown away by the others who have kicked up compassion to a whole other level, people I've never even met reaching out to say they're thinking about her and praying for her, and speaking as someone whose life revolves around that little girl, that's amazing.
Week before last, my boss Dani asked if I would be willing to go to staff worship at the church and let them pray for me. The entire church staff minus the nursery workers (hey, SOME of us have to work ;) attend staff worship every week. Many of these people, in spite of the fact that I've been on payroll for two and a half years, I've never met. Some of them I know by sight or by name but not both, and some could poke me in the eyeball and I wouldn't know them from Adam.
I went, because even though I don't particularly care to be in the spotlight, I am not foolish enough to pass up the opportunity to get someone to pray for my kid.
I wasn't sure what to expect, but when we opened with one of Mom's favorite hymns, I was immediately aware that I was meant to be there, to hear that. It's one of those songs I grew up on, but only now, at this point in my life, do I fully appreciate the words.
How sweet to hold a newborn baby,
And feel the pride and joy he gives.
But greater still the calm assurance,
This child can face uncertain days because He lives.
Because He lives I can face tomorrow
Because He lives, all fear is gone
Because I know He holds the future
And life and is worth the living just because He lives
It's almost like Instant Messaging from God.
Hey, Sara, relax. I've got this. I love her even more than you do. - G
It's truly something. Alan's devotional that day was about worrying. Or, more accurately, *not* worrying. And then he spent time on his knees, praying specifically for my baby.
Now... telling me not to worry is like telling my mom's dog, who lives with us now, that all squirrels are not evil. You say the word "squirrel" and Dream will go nuts, barking and looking frantically for the Tiny Gray Spawns of Satan so that she may destroy them once and for all. You don't have to say anything for me to worry. It's as natural as breathing.
And, oh yeah, that's my baby they're about to cut open.
But you know what?
My God is bigger than this. Bigger even than the most terrifying event of my life, handing my daughter over to virtual strangers and literally trusting them with her life. Which is ultimately also trusting them with my life, because she IS my life.
Here's a revelation:
I would give anything, do anything, if it were me instead of her. And in fact I can't say for sure that I wouldn't give anything for it to be anyone else but her. Not that I would wish it on anyone - of course not - but given the choice between my child and someone else? I'm going to choose my child. I'm being honest here.
And that's the key difference between God and me. The ability to sacrifice your own child... I am pretty sure I do not possess that.
Ahh, God. I see what you did there.
Not long after this diagnosis came about, I was struggling (obviously), and had just begun a Bible study with my fellow nursery staff members. The message in our very first session hit home with me, and as I was driving home I was praying for my baby girl. The words that came into my head surprised me, if only because I hadn't really considered it this way before.
"I love her enough to give my life for her. You love her enough that you already did."
... I know, right?
**
Today was my last day of work until May 9, and following our staff meeting, my coworkers gathered around me to pray for Ally and for us as we're facing this giant unknown, and then they loaded me down with gifts to make the hospital stay and recovery easier on everyone. I've said the word too many times for it to come close to describing how I feel, but I'm overwhelmed. The generosity, the spirit of love and support, the assurances that so many people are willing and even eager to do whatever they can to help, it's just too much for me to process and comprehend.
Wow.
It's not just my coworkers who have responded so heartily during this struggle, either. Aside from family and friends, I'm blown away by the others who have kicked up compassion to a whole other level, people I've never even met reaching out to say they're thinking about her and praying for her, and speaking as someone whose life revolves around that little girl, that's amazing.
Week before last, my boss Dani asked if I would be willing to go to staff worship at the church and let them pray for me. The entire church staff minus the nursery workers (hey, SOME of us have to work ;) attend staff worship every week. Many of these people, in spite of the fact that I've been on payroll for two and a half years, I've never met. Some of them I know by sight or by name but not both, and some could poke me in the eyeball and I wouldn't know them from Adam.
I went, because even though I don't particularly care to be in the spotlight, I am not foolish enough to pass up the opportunity to get someone to pray for my kid.
I wasn't sure what to expect, but when we opened with one of Mom's favorite hymns, I was immediately aware that I was meant to be there, to hear that. It's one of those songs I grew up on, but only now, at this point in my life, do I fully appreciate the words.
How sweet to hold a newborn baby,
And feel the pride and joy he gives.
But greater still the calm assurance,
This child can face uncertain days because He lives.
Because He lives I can face tomorrow
Because He lives, all fear is gone
Because I know He holds the future
And life and is worth the living just because He lives
It's almost like Instant Messaging from God.
Hey, Sara, relax. I've got this. I love her even more than you do. - G
It's truly something. Alan's devotional that day was about worrying. Or, more accurately, *not* worrying. And then he spent time on his knees, praying specifically for my baby.
Now... telling me not to worry is like telling my mom's dog, who lives with us now, that all squirrels are not evil. You say the word "squirrel" and Dream will go nuts, barking and looking frantically for the Tiny Gray Spawns of Satan so that she may destroy them once and for all. You don't have to say anything for me to worry. It's as natural as breathing.
And, oh yeah, that's my baby they're about to cut open.
But you know what?
My God is bigger than this. Bigger even than the most terrifying event of my life, handing my daughter over to virtual strangers and literally trusting them with her life. Which is ultimately also trusting them with my life, because she IS my life.
Here's a revelation:
I would give anything, do anything, if it were me instead of her. And in fact I can't say for sure that I wouldn't give anything for it to be anyone else but her. Not that I would wish it on anyone - of course not - but given the choice between my child and someone else? I'm going to choose my child. I'm being honest here.
And that's the key difference between God and me. The ability to sacrifice your own child... I am pretty sure I do not possess that.
Ahh, God. I see what you did there.
Wednesday, April 4, 2012
In Which I Get a Little Too Honest
"How is Mommy holding up?"
I get asked this question frequently these days, and I know that every person asking genuinely cares to know. It's not a passing "Hey, how are you doing?" that everyone expects the automatic answer "I'm fine," but I'll be honest with you, that is usually the answer I give them. Why? Because some habits are virtually impossible to break, and the truth is that I do not want to spend every day being honest about how I'm holding up.
Mom battled Hodgkin's Lymphoma for seven and a half years, the majority of that time spent in treatments like chemotherapy and radiation that made her feel sicker than she already did, which is the nature of the beast, of course. She ran fevers every day for years - literally years - and was constantly struggling with pneumonia. It's hard for your immune system to fight off illness when your disease and the treatment for it both attack your immune system. My point is that for the most part, Mom was sick and felt horrible for seven years.
And yet, every time someone asked her "How are you?" she would answer "I'm great!". Positive affirmation. You say it, you believe it, you basically will it to be true. This may seem to be optimism verging on naivety, but there's merit to it. If all you do is walk around thinking and saying how horrible you feel, what a bad mood you're in, and how much life sucks, you're going to feel more and more horrible, your mood will continue to decline, and life will keep on sucking. Not only that, but it's much easier to slip deeper into negativity than it is to rise above it.
Recently the ladies that I am blessed enough to work with formed a small-group type of Bible study for us, the nursery workers at the church, mainly because we all work there and therefore can't attend the studies the church puts on. Someone has to watch the kids, right? So on Sunday afternoons, a group of us leave the kids at home, sit in the comfortable chairs of the baby room and pray together, talk, and watch a video by Beth Moore. This series is called "Wising Up Wherever Life Happens", and the very first time we met, I had to force myself to get up and go. I was tired and down and not feeling well, but I made the decision to go anyway, and I was so very glad I did.
Barely into the first video, Beth told a story about a woman meeting for lunch with friends, and when asked how she was doing, she said "I'm okay... but kinda not."
Well today I am here to tell you, in (reluctant but honest) answer to each of you who have asked or wondered how I'm really doing:
I'm okay. But kinda not.
I'm not sleeping well, or much at all without medicinal assistance. My dreams are not friendly when I do, and I wake up just as tired as when I fell asleep.
My body is constantly on the verge of shutdown. I had my first ear infection in memory last week, along with a host of allergy-season-related issues and I've been on antibiotics and steroids for over a week now. I don't know if it's the medication making me feel so rotten or if it's stress or if it's exhaustion, or all three, but either way, I feel rotten.
Being in the (extremely lucky) position of a stay-at-home or take-her-to-work-with-me mommy since Ally was born has always given me a fairly reasonable ability to take my breaks when I needed them with minimal guilt. Ally has been with me nearly 24/7 for her entire life, and she is not what you'd consider a laid-back, easy-going child, so the times when I've felt close to my breaking point and needed to take a step back and remember who I am aside from "Mom", I've been able to do it.
Now, however, I feel guilty if I'm not one hundred percent patient and present in the moment. I would like to say that this is irrelevant because I have many many more years of being impatient with her or daydreaming about taking a roadtrip sans carseat and chatterbox. However, my brain just can not disregard the knowledge that yes, while I trust the doctors and God and believe that we are doing the right thing, there is always that chance.
I don't have to finish the sentence for you to know what I mean.
I would be flat out lying to you if I said I wasn't worried about the possible worst case scenario. You would probably know I was lying anyway, because anyone, anywhere, knows the risks to some degree, and I doubt that anyone, anywhere would be able to ignore the basic human nature of "What if?" I certainly can't.
I can hope, pray, trust, believe that everything will go perfectly, and I do, but at the back of my mind, there will always be "What if I'm wrong?" I've been known to be wrong before. It's happened. So bring on the guilt, because this Mommy is scared out of her wits of having regrets.
It's a tricky thing, needing to unload the burden and not wanting to burden others. I'm a hypocrite in this way... I am always ready and willing to let those I love (and even those I just tolerate) unburden themselves, but when it comes to turning it around the other direction, it's not so easy, even with the amazing support system I have around me.
Maybe kinda not, but I'm still okay.
I get asked this question frequently these days, and I know that every person asking genuinely cares to know. It's not a passing "Hey, how are you doing?" that everyone expects the automatic answer "I'm fine," but I'll be honest with you, that is usually the answer I give them. Why? Because some habits are virtually impossible to break, and the truth is that I do not want to spend every day being honest about how I'm holding up.
Mom battled Hodgkin's Lymphoma for seven and a half years, the majority of that time spent in treatments like chemotherapy and radiation that made her feel sicker than she already did, which is the nature of the beast, of course. She ran fevers every day for years - literally years - and was constantly struggling with pneumonia. It's hard for your immune system to fight off illness when your disease and the treatment for it both attack your immune system. My point is that for the most part, Mom was sick and felt horrible for seven years.
And yet, every time someone asked her "How are you?" she would answer "I'm great!". Positive affirmation. You say it, you believe it, you basically will it to be true. This may seem to be optimism verging on naivety, but there's merit to it. If all you do is walk around thinking and saying how horrible you feel, what a bad mood you're in, and how much life sucks, you're going to feel more and more horrible, your mood will continue to decline, and life will keep on sucking. Not only that, but it's much easier to slip deeper into negativity than it is to rise above it.
Recently the ladies that I am blessed enough to work with formed a small-group type of Bible study for us, the nursery workers at the church, mainly because we all work there and therefore can't attend the studies the church puts on. Someone has to watch the kids, right? So on Sunday afternoons, a group of us leave the kids at home, sit in the comfortable chairs of the baby room and pray together, talk, and watch a video by Beth Moore. This series is called "Wising Up Wherever Life Happens", and the very first time we met, I had to force myself to get up and go. I was tired and down and not feeling well, but I made the decision to go anyway, and I was so very glad I did.
Barely into the first video, Beth told a story about a woman meeting for lunch with friends, and when asked how she was doing, she said "I'm okay... but kinda not."
Well today I am here to tell you, in (reluctant but honest) answer to each of you who have asked or wondered how I'm really doing:
I'm okay. But kinda not.
I'm not sleeping well, or much at all without medicinal assistance. My dreams are not friendly when I do, and I wake up just as tired as when I fell asleep.
My body is constantly on the verge of shutdown. I had my first ear infection in memory last week, along with a host of allergy-season-related issues and I've been on antibiotics and steroids for over a week now. I don't know if it's the medication making me feel so rotten or if it's stress or if it's exhaustion, or all three, but either way, I feel rotten.
Being in the (extremely lucky) position of a stay-at-home or take-her-to-work-with-me mommy since Ally was born has always given me a fairly reasonable ability to take my breaks when I needed them with minimal guilt. Ally has been with me nearly 24/7 for her entire life, and she is not what you'd consider a laid-back, easy-going child, so the times when I've felt close to my breaking point and needed to take a step back and remember who I am aside from "Mom", I've been able to do it.
Now, however, I feel guilty if I'm not one hundred percent patient and present in the moment. I would like to say that this is irrelevant because I have many many more years of being impatient with her or daydreaming about taking a roadtrip sans carseat and chatterbox. However, my brain just can not disregard the knowledge that yes, while I trust the doctors and God and believe that we are doing the right thing, there is always that chance.
I don't have to finish the sentence for you to know what I mean.
I would be flat out lying to you if I said I wasn't worried about the possible worst case scenario. You would probably know I was lying anyway, because anyone, anywhere, knows the risks to some degree, and I doubt that anyone, anywhere would be able to ignore the basic human nature of "What if?" I certainly can't.
I can hope, pray, trust, believe that everything will go perfectly, and I do, but at the back of my mind, there will always be "What if I'm wrong?" I've been known to be wrong before. It's happened. So bring on the guilt, because this Mommy is scared out of her wits of having regrets.
It's a tricky thing, needing to unload the burden and not wanting to burden others. I'm a hypocrite in this way... I am always ready and willing to let those I love (and even those I just tolerate) unburden themselves, but when it comes to turning it around the other direction, it's not so easy, even with the amazing support system I have around me.
Maybe kinda not, but I'm still okay.
Thursday, March 29, 2012
26 Days
Somehow I knew, when Dr. Lau (cardiologist) told me this morning that he'd be sending the referral to Dr. Kirklin (surgeon) and they'd be calling me in "a couple of days" to schedule the surgery, that it'd be sooner than a couple of days. I was right, four hours after we got home Dr. Kirklin's office called, and five minutes after that we had the surgery scheduled.
April 24th.
Now, you have to understand that I have severely mixed emotions about this.
On the one hand, we started on this journey on January 13th, when her pediatrician heard the heart murmur and decided to send us to the cardiologist. It's been a bumpy road, emotionally exhausting, but we've known for a while that it would probably come down to this, with absolute certainty for the last two weeks. Since this is such an overwhelming event, and stress and worry are our constant companions, and the day it was decided we would have to face this I've wanted nothing more than to get it over with, move on with our lives, heal, recover, go to Disney World.
On the other, as a mother, sending my baby into the operating room is something to dread, and dread hard. I know as well as anyone that anytime someone is having surgery, going under anesthesia, there is always a risk that they won't make it through and that this risk is minimal for this surgery. But there's still a risk, and any is too much for a mother. It'll be worth it. She will feel better. She will be able to be more active, and there will be less risk *afterwards* of life threatening complications. It's worth it... oh yes, it is, but still.
I'm okay if I don't think too hard about it, and I've become something of an expert at relaying the facts in a clinical manner since going through what we did with Mom. I can tell you what's going to happen, what's going to be done to Ally, but if I really think about what I'm saying, I'm a mess.
In that vein, I know how difficult it is for many people to feel comfortable asking questions, but don't worry. I don't mind, not at all.
Here's what's going to go down:
In the afternoon of Monday, April 23rd, we'll go in to meet Dr. Kirklin, who will check Ally out and then send us to the clinic for bloodwork and x-ray. This is just precautionary to make sure she's not sick.
Tuesday, April 24th, we check into the hospital at 5AM and get registered. The doctor will speak to us again before surgery, and we can stay with Ally until she's taken to the OR (I do NOT know yet if she'll be sedated before they take her away). The surgery will last roughly six hours.
The procedure is called a septal myomectomy, where they will cut into her chest and through her breast bone, then remove part of her heart muscle that is blocking the left ventricle. The heart has to be stopped during this time, so she'll be put on a heart/lung machine to keep her blood moving and oxygenated. The surgery doesn't actually take all that long, I think Dr. Lau said that a couple of hours is getting her back off the heart/lung machine.
During this time they will also implant the ICD, which will be programmed to watch for certain patterns, abnormal heart rhythms, and be ready to shock it back if it stops. It'll be implanted in her abdomen and the leads will run up under her ribs to her heart to help protect them from damage.
After she is out of surgery, she'll be transferred to the CICU for 24 hours. We can stay with her there, though we can't sleep there (I foresee an all-nighter). After that, she'll be moved to the pediatric floor with a private room. Optimistically, we should be able to go home on the weekend. 5-7 days is the prediction, so that's between Saturday and Monday.
Dr. Lau says she will probably be running around driving us crazy within two weeks of surgery because kids are ridiculously resilient, but we will have to keep her home for five weeks to avoid exposing her to germs. A cold or flu wouldn't necessarily be any more dangerous to her than usual, but any fever that soon after surgery has to be treated as a possible infection and she would have to be hospitalized as a precaution. No good!
So see? I can be clinical and tell you what's going to happen.
If I start to think about it, however, what you'd be getting is something more along these lines:
dhso;giuarh2'J3QR
-FEH0IUF;OINVKLJDFOPJGFSD
hsgo;foajposwke
... yeah, nobody wants that.
April 24th.
Now, you have to understand that I have severely mixed emotions about this.
On the one hand, we started on this journey on January 13th, when her pediatrician heard the heart murmur and decided to send us to the cardiologist. It's been a bumpy road, emotionally exhausting, but we've known for a while that it would probably come down to this, with absolute certainty for the last two weeks. Since this is such an overwhelming event, and stress and worry are our constant companions, and the day it was decided we would have to face this I've wanted nothing more than to get it over with, move on with our lives, heal, recover, go to Disney World.
On the other, as a mother, sending my baby into the operating room is something to dread, and dread hard. I know as well as anyone that anytime someone is having surgery, going under anesthesia, there is always a risk that they won't make it through and that this risk is minimal for this surgery. But there's still a risk, and any is too much for a mother. It'll be worth it. She will feel better. She will be able to be more active, and there will be less risk *afterwards* of life threatening complications. It's worth it... oh yes, it is, but still.
I'm okay if I don't think too hard about it, and I've become something of an expert at relaying the facts in a clinical manner since going through what we did with Mom. I can tell you what's going to happen, what's going to be done to Ally, but if I really think about what I'm saying, I'm a mess.
In that vein, I know how difficult it is for many people to feel comfortable asking questions, but don't worry. I don't mind, not at all.
Here's what's going to go down:
In the afternoon of Monday, April 23rd, we'll go in to meet Dr. Kirklin, who will check Ally out and then send us to the clinic for bloodwork and x-ray. This is just precautionary to make sure she's not sick.
Tuesday, April 24th, we check into the hospital at 5AM and get registered. The doctor will speak to us again before surgery, and we can stay with Ally until she's taken to the OR (I do NOT know yet if she'll be sedated before they take her away). The surgery will last roughly six hours.
The procedure is called a septal myomectomy, where they will cut into her chest and through her breast bone, then remove part of her heart muscle that is blocking the left ventricle. The heart has to be stopped during this time, so she'll be put on a heart/lung machine to keep her blood moving and oxygenated. The surgery doesn't actually take all that long, I think Dr. Lau said that a couple of hours is getting her back off the heart/lung machine.
During this time they will also implant the ICD, which will be programmed to watch for certain patterns, abnormal heart rhythms, and be ready to shock it back if it stops. It'll be implanted in her abdomen and the leads will run up under her ribs to her heart to help protect them from damage.
After she is out of surgery, she'll be transferred to the CICU for 24 hours. We can stay with her there, though we can't sleep there (I foresee an all-nighter). After that, she'll be moved to the pediatric floor with a private room. Optimistically, we should be able to go home on the weekend. 5-7 days is the prediction, so that's between Saturday and Monday.
Dr. Lau says she will probably be running around driving us crazy within two weeks of surgery because kids are ridiculously resilient, but we will have to keep her home for five weeks to avoid exposing her to germs. A cold or flu wouldn't necessarily be any more dangerous to her than usual, but any fever that soon after surgery has to be treated as a possible infection and she would have to be hospitalized as a precaution. No good!
So see? I can be clinical and tell you what's going to happen.
If I start to think about it, however, what you'd be getting is something more along these lines:
dhso;giuarh2'J3QR
-FEH0IUF;OINVKLJDFOPJGFSD
hsgo;foajposwke
... yeah, nobody wants that.
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