A Successful Fontan

After spending 26 nights in the hospital for Mia's Fontan, we have been home almost 2 weeks.  I feel like I can finally breathe a sigh of relief and say that Mia's Fontan was a success.  We expected our hospital stay to be 7-10 days.  It was triple that.  On Monday I took Mia to Denver for her post-op appointment.  We started out with a chest x-ray, followed by a clinic visit.  I was most nervous about the chest x-ray because if any of the fluid we waited nearly 4 weeks to stop draining had re-accumulated, we would've been readmitted to the hospital.  The x-ray was clear of any fluid build up.  Thank goodness.

Mia is amazing.  The things she had to go through during our stay in the hospital are things that most adults never have to experience.  For the first 2 weeks we were there, I really didn't know if I'd see my baby girl smile again.  I didn't know if I'd see her get out of her bed and not scream at the top of her lungs.  Then one day, I don't know how or why, she smiled, got out of bed, and started walking around again.  It was that sudden of a change.

While Mia's torso may still look like a battle field, you'd never know she had open heart surgery and was in the hospital that long by looking at her.  Her lips and feet are more pink that I have ever seen them and she's happy.  Her oxygen sats are in the low 90's (without any oxygen by nose), which I never thought would be a possibility, let alone reality.

I know that along the path of Mia's hospital stay, my husband and I updated on Facebook.  While many of those updates told the highlights of what was happening, it was far from being the entire story.  I kept daily notes of what went on, not only to ensure that Mia was able to collect her Beads of Courage, but also to remember.

One day I would like to write the story of Mia's Fontan from my perspective.  Right now, I'm not ready.  Right now I just want to enjoy being home with all four of us under one roof.  And I want to continue to be amazed by my daughter every single day.

The Time Has Come

In one week, on September 26th, Art & I will be sitting in the Children's Hospital waiting room.  We will be waiting for the updates on Mia as they open her chest, stop her heart, put her on bypass, work their magic, and restart her heart again.  We will be waiting to hear the outcome of the surgery and to see how she begins her recovery.  There are very few people that can understand what this is like.  It's not like taking your child in to get shots or discovering they have an ear infection and need antibiotics.

Mia will need many "shots" and "antibiotics" while she is admitted.  She will also need chest tubes, a breathing tube, an IV, oxygen, pain meds, the list goes on and on.  I'm terrified.

She has no idea what is going to happen, she's too young to understand.  I can't imagine how scary it will be for her waking up from surgery, not knowing where she is, with all kinds of new tubes attached to her body and in pain.

I look at her standing in our living room and it appears as though absolutely nothing is wrong.  She's doing so great.  It's incomprehensible to think that she HAS to have this surgery to survive later in her life.  Yes, to survive.

Art & I follow a few older girls that have HLHS on Facebook.  They're in their early 20's.  They are our inspiration.  That is what I wish for Mia.  I wish for her to get through this surgery with flying colors and live a long life.  I will be there supporting her the entire way.

With tears in my eyes, this will be my last post before Mia's surgery.  It's simply too hard for me to think and type about it more than I already do.  I want to spend the next week with my family, in our own home, healthy and happy.  Art & I will update when we can while we are in Denver.  If you a person that prays,  please pray for our Mia.  And wish all four of us luck as we, once again, embark on the journey of an open heart surgery.  

Crunch Time

17 days from now, Mia's 3rd open heart surgery should be completed.  I believe I have officially entered panic mode.  This week I will be running around like crazy doing all of my errands for our time in Denver.  Starting on Friday (after Izzy is done with school), we will not be leaving our home until pre-op day.  The thought of being stuck in the house for that long makes me cringe, but I know it's for the best.  This morning before taking Izzy to school, her teacher called me to let me know that they've already had 2 kids out sick.  Fantastic.  That's exactly why we won't be sending her after Friday.  We all got our flu shots last week and I can only pray that we stay healthy.  During my trip to the grocery store this morning, I think I sanitized my hands at least 10 times.  I'm paranoid about Mia getting sick and prolonging her stay in the hospital.  I'm scared for surgery day to be here, but I also just want to put it behind us.  I guess, "this too shall pass."

Looking to the Future

This morning as I was reading the newspaper, I came across an ad for Hobby Lobby.  Almost all of the items advertised were decorations and crafts for Christmas.  After looking at it, I suddenly realized that Christmas is a mere 4 months away.  I started to think about how fun Christmas will be at our house this year.  My girls will be perfect ages for the pure joy and magic that Christmas brings.  As I was envisioning our home decorated and the excitement on my girls faces, I couldn't help but think to the future.

Lately, not a day goes by that I don't think about the road that we will be maneuvering in a month.  In my head the map has so many turns and unknown whereabouts, that I can hardly comprehend it all.  And at the end of the chaos is our destination.  All four of us coming home together and doing what we do best, being a family.  Enjoying things together, like Mia's 2nd birthday, Thanksgiving, Christmas.  I truly hope that is our final destination and that we do not encounter any detours.

I don't want to think about the detours or the dead ends that may come in our way, but it's reality.  I don't want people to tell me not to worry about it or that everything will be ok.  Yes, that is the ultimate hope and odds are it will all be ok.  However, there are also legitimate fears that I think about daily.  There are fears that I need to talk about and need to face.  Maybe it's the question that I'm not supposed to ask out loud, but what if it's not all four of us at Christmas?

The hard truth is that Mia has half a heart, she always will, until one day she needs a transplant.  How many Christmas's will that be?  Will she graduate?  Will she go to college?  Will she get married?  I don't know.  As I type this, seconds of that future are ticking away.  Can I live my life in fear?  No.  But do I have fears that I think about and, at times, need to talk about?  Yes.

Sick

Well, both my girls are sick with a cold.  I guess better that it happens now.  Mia's surgery is 5 weeks from today.  That should be enough time to get over a cold, right?  Hopefully we just don't keep passing it back and forth to each other.  In about 2 weeks we're going to start being extra careful about germs.  Fun.  I feel like we've reached the start of the countdown to surgery day.  I've even counted.  It's 34 days from today.  I've started making my lists of what we need to bring where.  It's upon us.

Yesterday Mia had her final cardiology appointment before surgery.  Thankfully, they were able to get a full echo.  Apparently it's hospital policy that they have to have a good echo within 3 months of surgery.  Aside from yesterday, her last successful one was in April.  If they hadn't gotten it yesterday, they were talking a sedated echo before surgery, I'm so glad we don't have to do that.  Everything on the echo yesterday looked good.  Our cardiologist even referred to her heart function as "normal."  That amazes me.  Mia amazes me.  I've said it before and I'll say it again, she is our miracle.  I love her more than words can express.  With the last appointment and echo behind us, now we simply need to stay away from sick people (HA, I'm not sure that's even possible!) and get well!

Drained

Today was pretty much like every other day in our house, the only exception is that right now, almost 6:30 in the evening, I'm completely drained.  Mentally, physically, emotionally, I feel like I have nothing left.

I've been thinking a ton about Mia's surgery lately, thus not getting very much sleep.  I can't believe it's almost the middle of August.  Art and I sat down this morning and planned out exactly what we hope will happen on pre-op day and surgery day.  Who needs to be where at what time and all of that.  Maybe that wasn't the best way to start the morning, I don't know.

Right before lunch I went to pick up Mia's medications.  I go every two weeks, so this isn't out of the ordinary at all.  Got the medications, paid, and went to the car.  Because she still takes her meds out of a plastic syringe in liquid form, I have to get these special caps to put on the bottles for the syringe.  Luckily I checked the caps before driving home and found they were the wrong size.  So I went back into the pharmacy, took the caps off the medication and had the cashier try the caps before I left.  Well wouldn't you know it, my hand hits one of the bottles and probably 3 days worth of medicine spills out.

It wasn't about the medicine spilling, or the fact that we'll have to pay for another bottle sooner than expected, but for whatever reason, spilling that medicine put me over the top.  I started sobbing.  Right there in the middle of the pharmacy.  Two cashiers and a pharmacist just stood there and stared at me.  I was the most embarrassed that I've been in a long, long time.  I didn't know what to do.  I just cried and looked at them saying "I'm sorry" over and over.

Those poor people have no idea why I was crying.  To them it looked like I knocked over a bottle of medicine and it upset me tremendously.  That I was crying over spilled milk, or in this case, Enalapril.  I was crying over something much, much deeper than that.  They don't know what goes on at our house every day, they don't know what we have in store in exactly 7 weeks.  To them, I will now just be the crazy lady that cried because I spilled a few tablespoons of medicine on the  counter.  If only it were that simple.

Surgery Date Change

Because we had scheduled Mia's surgery so far out, we knew that the date changing could be a possibility.  Today it changed not just once, but twice.  Our surgeon will be at a conference the week that it was originally scheduled.  So first they rescheduled us for exactly a week later.  Then his assistant called back later this afternoon to let us know that the scheduler read is schedule wrong and he won't be back.  Still that same week, but on Thursday instead of Tuesday.  New surgery date...September 26th.  I asked his assistant many time to check his schedule to see that he would for sure be there then and for a few weeks afterwards as well.  She assured me he would be.  I'd much rather find out now, when we're still about 2 months out, than the day before!