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...

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.

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.)

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.

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.

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.

Tender Hearts

One of the things I've had a little trouble accepting since Ally's diagnosis is the fact that she will never be able to play sports.

When I was growing up, I harbored an intense desire to do gymnastics. Never ballet, never sports, but I wanted to be a gymnast so bad I couldn't stand it. It took becoming an adult and really examining the situation our family was in for me to understand why it wasn't possible. My mom was a single mother with three kids in private school and the funds just weren't there. By the time our situation had changed, she looked into it but was told I was "too old to start". I don't have any resentment for it now, but I admit I had every intention of living vicariously through my daughter, a dream only encouraged by her physical stature. She is short and compact and I merely choose to overlook her klutziness (kid can't walk through air without tripping). Gymnastics, sign her up!

Ten years ago this fall I started working for a wonderful family as a full-time nanny. The kids were 3 and 4 when I started, and I have to tell you, taking those stinking adorable kids to soccer practice and games, I made up my mind that I couldn't wait for my child to be playing. Have you ever watched four-year-olds play soccer? It might just be the cutest, funniest thing in the world. With their little jerseys and shin guards and cleats?? Soccer, sign her up!

Well, not anymore. This is such a minimal disappointment that it doesn't even warrant worrying. There are plenty of other things to do in life, and I don't feel at all deprived because I didn't play sports or get to do gymnastics as a child. Still, it was just another thing in a long list of them, the words "life altering" are not an exaggeration. Unless she one day needs and receives a heart transplant or a cure is discovered, HCM will be a part of Ally's life and will dictate what she can and cannot do.

Recently, the 9-year-old son of a friend of mine, decided he didn't want to sign up for soccer this spring. We were on the phone while he said this, and she was having no luck convincing him to do it willingly, so I said "Why don't you tell him he should play soccer since Ally can't?"
(Wow... where did my ability to lay on a guilt trip come from?)
I didn't actually intend for her to do it, but she is one of those people that I very well know you should never ask to do something if you don't really want her to do it.

I listened while she asked him if he remembered her telling him about Ally, her heart, and how she wouldn't be able to play sports. I listened while she asked him if he could maybe play soccer on Ally's behalf this year, and at the end of the season, maybe send Ally his trophy.

She said he got teary eyed when he said he would, which is a fairly accurate if understated assessment of what I was going through on the other end of the line.

This little 9-year-old boy, who has never even met Ally, signed up to play soccer for her, because she can't.

If that doesn't get to you, well... I just don't know about you.

Decisions

I am 31 years old.

I started my first job as a nanny when I was 18 years old, and ever since then I've worked with children, whether as a nanny full time or part time, caregiver to a child in my home, or my job now, working in a church nursery.

I've been married for seven years next month. My daughter turned four in November. I have a job and a mortgage and two cars and a privacy fence. I'm a grown-up, right?

My mother passed away four years ago in May, when Ally was six months old. We were very close and she fought a very long battle against cancer. Losing her was, without question, the most difficult thing I had ever experienced, and in spite of the hundreds of times I was told it would get easier with time, I'm finding that not to be the case, because I am just a big baby. I am a momma's girl, and whenever things are hard or whenever they're good, whenever Ally does something really smart or says something funny or has a really, really bad checkup that leads to open heart surgery, my head is always screaming "I WANT MY MOMMY!"

So being a grown-up means that the decisions are on me. In this case, of course, I have a shared burden with my husband. When it comes to decisions about Ally, the buck stops here. We're the final word.

For someone who is constantly in a mental temper tantrum over being motherless, it maybe should be cause for concern that I have so much authority. Did I mention that making decisions has never, ever been my forte? Just ask my mom.

So the diagnosis comes down the pike and all the brainiac doctors reach the same conclusion: Ally needs surgery, and she needs it soon. We need to go in and make it so her heart can function a little easier, a little more like it's supposed to, and we also need to install an electronic device so that if her heart doesn't do what it's supposed to and stops, it can save her.

Now, the big question: WHERE?

There are three places in North America with cardiologists who specialize in HCM. If Ally were 16 or 25 or 50 and needed this surgery, we'd be packing it up and driving to Cleveland to have her heart operated on. The adult CV Surgeon at the Cleveland Clinic is arguably one of the best in the world for dealing with this very same problem. It would almost be a no-brainer.

The problem is that Ally is four, and her heart is much, much smaller than an adult's. The surgery is much more complicated because of that, and that muddies the water quite a bit on who might be absolutely 100% the best to do her surgery. We're blessed to have UAB so close, with so many smart people, but the decision about where to take her is just not black and white at all.

Aforementioned genius HCM surgeon would be in the operating room with the pediatric surgeon if we chose Cleveland... that's an appealing level of expertise.

But there's a list a mile and three quarters long of upsides for UAB, too. Just to name a few:

• It's close to home. She has surgery and is in the hospital for a week, we get in the car and we're home in 90 minutes, versus 12 hours from Cleveland.

• My family and friends, with a handful of (important!) exceptions, are in or near Birmingham. It's where I grew up. Never underestimate the value of your support system, although you might because your support system is just not as good as mine. Sorry, it's the truth.

• Insurance is something not to be toyed with. Finding out if Dr. Zahka in Cleveland was covered for us to see him for a second opinion was a nightmare for me. Getting every single doctor she might come in contact with cleared through our insurance is not something I want to be focusing on under the circumstances. The money may not matter in the big picture, but this is not a nose job we're talking about. I would much rather know what's coming at me financially than just hope for the best.

• Dr. Kirklin is the surgeon at UAB. If you live in Birmingham, you will recognize this name. Half the city is named after his father. There's a reason for that, and a reason he's the head of the department.

It's such a tremendous burden to make the right decision when you could certainly consider it life or death for your child. We have some truly amazing people in our lives who we know, without a doubt, are there to support us, offer us advice if we ask for it and an ear if we just need to talk. Personally I would not have a shred of sanity left if it weren't for these people, but it ripples out so much farther than just people we are in immediate contact with. I've been sending out email updates since this whole thing started, and I get messages forwarded back to me by my family and friends, notes from people I don't even know saying that they are praying for us and for Ally, and I can't even tell you how much that means to me.

Why? Because I can't make this decision on my own. I'm just a child myself sometimes. I'm not capable of handling this on my own.



It's easier said than done... even though I can hear her voice in my head, I'm not Mom. But I am trying, and the prayers of all these people, the ones I know and the ones I don't, make a big difference. When I asked for prayers for wisdom so that we could make the best decision possible for Ally, people have been responding in spades.

Maybe there isn't a clear cut sign, flashing neon billboards with arrows pointing at the right choice. No message from God written plain as day in the clouds. Really, how great would that be? But that's not exactly how God operates. He speaks to your heart.

Right now, my heart is telling me we need to stay close to home for this. Maybe the overwhelming personal, selfish need I feel to have the people I love within easy reach if something goes wrong, or even if nothing goes wrong, is God's flashing neon sign. Maybe it's not weakness, but the message in the clouds.

Thursday morning, we're meeting with Dr. Lau again to get questions answered hopefully to the extent that both our hearts are at peace with the decision to stay in Birmingham, and from there, we move forward.

Broken Heart

It wasn't eight months ago that my husband and I were talking about how lucky we have been with our daughter, Ally.

Don't get me wrong - I'm not changing that position now, but it seems as if I should've knocked on some wood when the conversation happened. At four years old, I could count on one hand the number of sick visits Ally has taken to the doctor. She didn't have her first one until seventeen months old when she suddenly developed an ear infection, and even after that very first sick child visit, there were very few more. I personally felt, and her pediatrician agreed with me, that this could very easily be attributed to extended breast feeding (she was over 2 before we stopped) and also that I was blessed enough to stay home with her and take her to work with me rather than having to drop her off at the Germ Festival (aka daycare) every day.

What sparked this conversation between Al and me is that at age 3 1/2, Ally started crossing her right eye, and at first we thought she was doing it on purpose. Months went by and she didn't stop, in fact it started getting more and more noticeable and frequent. At one of her rare sick visits to Dr. Ellis, we asked about it, and he sent us to see an ophthalmologist. I admit to taking it harder than I should have when we were told she needed glasses. No big deal, in retrospect, but my previously Picture Of Health daughter suddenly needed something she wouldn't understand. After patching her "good" eye for three months, her eyes are now about even with a +4.50 prescription lens. She loves her glasses... they're purple.

A month after her follow up appointment with the ophthalmologist, we returned to Dr. Ellis for her four-year-old checkup. Totally routine... she's healthy and happy and (finally!) potty trained. Until he notices a heart murmur.

"It's probably nothing," He said, and before we had her shoes back on, we had an appointment with a pediatric cardiologist for an echo.

Somehow, when a doctor tells you "it's probably nothing" but he's referring to an imperfection in your baby's vital organ, it's not so easy, for me at least, to believe that it's probably nothing. It's not something I'm proud of, this tendency to fear the worst, but there it is, my greatest weakness. Where Ally is concerned, it has always been nothing, or almost nothing, for over four years, but still I worried.

Four days later we sat in a pediatric cardiologist's office while the doctor sent her out of the room and told us to stay put.

"It's not nothing," He said.

Hypertrophic Cardiomyopathy is a congenital heart defect in which the heart muscle grows too thick and can't efficiently pump blood. In Ally specifically, there is significant blockage of the left ventricle, and her heart must work too hard to get her blood where it needs to go.

Obviously neither of us knew anything about this disease, but we knew enough by the time we walked out of there to be devastated. Her entire life will be affected, she can't participate in sports or strenuous exercise of any kind. It doesn't get better, it does get worse. She will need surgery. Most alarming, we were informed, is that when you hear of otherwise perfectly healthy kids falling out on a sports field with sudden death, it is usually this disease. A silent and very serious killer that often exhibits no symptoms before sudden death occurs. We are lucky to have found out about it.

The doctor sent us on our way and told us to come back in six months, or call him if she started showing symptoms.

That lasted for about twelve hours, at which point we decided that with UAB and world-renowned heart doctors a hundred miles away, it was beyond stupid not to get a second opinion.

My sister-in-law's mother, Robbie, is a cardiac nurse at UAB, so the next day I spoke with her, asked her who to see, and a week later we were in Dr. Lau's office.

It's not what you know, it's who you know, they say.

Dr. Lau did another echo, and an EKG, and put Ally on a Holter monitor for a 24 hour period. In a case such as hers, he said, he needed to consult with his colleagues. She's very, very young to have such a severe manifestation of this disease. It typically does not show up until puberty, so the fact that she has it so bad now is unsettling. At the same time, performing open heart surgery on a four year old is nothing to go into lightly, either.

Dr. Lau promised he would call me once the results of the Holter were in. When they were, he did, and it wasn't good news. They felt that we should seriously consider surgery sooner rather than later.

It's a sickening feeling that doesn't really go away. Every time I think about it, about what that entails, I lose a little bit of nerve, get a little queasy, a little shaky. That's my baby they're talking about cutting open. Something essential to her survival that they want to operate on.

I needed reassurance from someone who could be both informed and objective, and after a phone call to Ally's pediatrician, Dr. Ellis, we made up our mind to get a third opinion, from a specialist in this condition, a decision which had the full support of every doctor we spoke to. HCM is rare enough that specialists are relatively hard to find, but with family in Ohio we decided the best place to go would be the Cleveland Clinic, to see Dr. Zahka.

Dr. Zahka requested extensive bloodwork...bloodwork arrived in advance, the MRI disk rode to Ohio with us.

Dr. Zahka answered a lot of questions for us, reiterating what the others had said about her case being severe. Surgery would be necessary within a year, most likely, and unfortunately a year does not reduce the level of complexity with this surgery. Ten years would make a difference, but there's no way she'll go that long without surgery. He assures us he will review the MRI and the echo with other doctors in Cleveland, and will call us once he's done so.

Five days later, Dr. Zahka is telling me that it needs to be within six months now. There's no benefit to waiting, and even though he'd originally been of the opinion that an ICD (implantable cardioverter defibrillator) wasn't a good idea, he'd changed his mind about that, too.

Knowing that so many brilliant minds, both in Birmingham and Cleveland, have been talking, thinking, consulting about Ally is both comforting - under the circumstances - and upsetting, because the circumstances warrant so much attention. There's no doubt about it, her little heart is not in good shape. It's bad enough that while they do not usually want to perform such a serious surgery on such a small child, in her case not doing surgery is the riskier option.

It's heavy stuff. Hard for a parent, considering either path, knowing the risks involved.

My sweet, tender hearted, stubborn, smart, funny, silly girl. If I could trade places with her, I would. In a heartbeat.