Here I Sit

As I type this I am, once again, waiting on hold to speak with an insurance company.  Last week, my week was defined by insurance companies.  Without underestimating, I believe I spent a minimum of 5-6 hours on the phone with an insurance company, the state Medicaid office or the county Medicaid office.  I also went to the Larimer county health office downtown and conversed with several people over email.  Long story short.  Mia's health insurance was terminated.  Not good when all of her HUGE hospital bills are coming through.  Her insurance is through the state, thus we cannot also have Medicaid (it's a policy that her insurance company has in our agreement).  Two years ago, I went through the exact same nightmare.  I thought that it was all fixed, turns out a glitch in the state system still listed Mia as having Medicaid.  So I had to work on getting the Medicaid fully taken out of the state system (ha, not an easy task) and get her insurance reinstated.  Keeping in mind that the insurance I was trying to get reinstated is literally going away the 1st of the new year.  Very easy to understand, right?!?  A week later, yesterday, I finally got the confirmation call that it was all taken care of and her insurance was reinstated without a lapse in coverage.

In addition to all of that, we are having to cancel all of our current insurance policies (all meaning, for all 4 of us) because we are switching to a new plan in January.  I have one more company to call and then, knock on wood, I hope to be done waiting on hold for an insurance company for awhile!

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!

Remembering

Today as I was waiting at a red light at an intersection, traffic in all directions was halted by an approaching ambulance.  As I heard the sirens and watched the flashing lights drive past, I was reminded of a day in my life that changed who I was forever.  The morning that I was taken in an ambulance after falling to the floor of my apartment for an unknown reason.  The day I had a stroke.

Sometimes an ambulance or emergency vehicle passes by me and I don't give it a second thought.  Other times, like today, I have flashbacks of that morning.  I remember not being able to communicate with my parents over the phone.  I remember strangers practically breaking in the door to get to me.  I remember going in and out of consciousness in the ambulance.  I remember waking up in the ER, seeing a bright light, and hearing the voices of angels calling my name.

It's sometimes hard for me to remember my recovery time in the hospital, it's all a blur, but I will never forget that morning.

Today those memories played over and over in my head.  For many months, possibly years, after my stroke, I tried to push those memories out of my head.  I didn't want to remember.  But I now realize, that those memories have greatly shaped me into the person that I today.

They're memories that are very hard for me to rehash and hard for me to share.  But every once in awhile, they come to mind.  At those times, it is very plain to see that life can change in an instant and we should never take a minute of it for granted.

Putting Things in Perspective

This evening we were at my in-laws house to celebrate my father-in-law's birthday.  While we were there, I was chatting with my brother-in-law about Mia's upcoming surgery.  At the end of our conversation about the surgery, he said, "well, no matter what, we have to consider ourselves lucky for what we have."  And he's right.  I'm so lucky to have Mia.  No matter how many surgeries she has to undergo.  No matter how many doctor's appointments we have to attend.  No matter the fact that her heart only has two working chambers, I'm lucky.  I have a beautiful, happy, amazing daughter.  Mia, Izzy and Art are my everything.  I am lucky.

Mia's third open heart surgery is 2 months from Wednesday.  It has been on my mind constantly lately.  Earlier today I read a blog post about the third HLHS surgery called the Fontan.  It was a success story.  Usually I find that I'm reading Fontan stories about kids with not very happy endings, this story was just the opposite.  It was refreshing.  It gave me hope.  It put my mind at ease a little bit.  The story was about a little girl about Mia's age when she had her Fontan.  She was in the hospital for 8 days and has recovered wonderfully.  The family is now 2 years post Fontan and living a pretty "normal" life.

Ever since we made the decision of when Mia's surgery will be, I have questioned whether or not we made the right choice.  Mostly because of her age.  She won't even be 2 yet.  The surgery is exactly a month from her 2nd birthday.  But the story I read today also opened my eyes to see that I DO think we made the right choice and that there are other kids out there that have had the surgery at a younger age.

There is a fellow heart mom in our town whose daughter is having her Fontan tomorrow.  Her daughter is a little over 2 years old.  I share their fears.  Tomorrow they will be embarking on something that very few parents can understand.  I understand.  While there I days when I wish over and over that I didn't understand, that I was clueless to what some families go through, today I consider myself lucky to have that understanding.  No matter what happens in two months, I have a beautiful, happy, amazing daughter.  I have my Mia, and I am lucky.

Happy Girls

The other day the girls and I were playing dress up.  They were having so much fun.  I love seeing huge smiles on their faces.  Every day is dress up day for Izzy, but Mia doesn't usually like to dress up.  Well she couldn't get enough of it that day!

They also loved having their picture taken to show the results.  Cracked me up that as soon as I pointed the camera at them, they both started saying "cheese" and posing.  Love them so much!

Growing Up

I've been thinking a lot lately about how my girls are growing up so fast.  A few days ago I had to go through Izzy's old size 3T clothes to find shirts for Mia to wear.  Izzy had her first soccer game last week and will be starting pre-k in the fall.  It's already going too fast.  It's been going too fast since the day they were born.

While they continue to grow, so do I.  It's crazy to me that Art and I just celebrated our 7 year wedding anniversary and in a month I'll be 32.  Some days I feel like I've aged way more than I should have at this point in my life.  Other days, I feel like I have a long way to go in my growing up process.  I still get angry too quickly and I still "pout" when I don't get my way.  But I also now know what it means to be a wife and mother.  While I might get angry to quickly, I cherish the moments during the day when I get to sit back and relax (they're few and far between these days)!  And while I may be slightly disappointed that I've traded a shopping spree for Kids Day at Centerra, I love seeing my girls smile when they're having pure fun.

The priorities have changed and so have I.  Sometimes I lose sight of the things that make me happy and I don't know why.  I have three constant reminders staring at me each and every day.  I have a wonderful husband that worked hard to find a job for both of us to do from home so that we could spend more time together.  I have a spunky four year old that mimics my every move because she looks up to me.  And I have my precious 19 month old that wishes I would carry her around all day just so that she can be near me.

On days when I'm feeling down on myself, I've realized that I need to take a step back and look at what I've accomplished so far.  A loving marriage and two adorable kids really aren't half bad!

Surgery Date

On Monday the scheduler called to pick a date for Mia's Fontan surgery.  Tuesday, September 17th.   I got off the phone with her and I didn't know how to feel.  It's a weird feeling.  We wanted to know so badly when the surgery would be, but now that we know, I really don't want to know.  I'm not even sure how that makes sense.

It's hard for me to wrap by brain around the fact that in about 3 months we'll be taking her in  for her pre-op day on September 16th and then going in early the next morning for the surgery.  Between now and then we will have one check-up in Broomfield in July.  Aside from that we can enjoy the summer.  For the last few days, every time I look at Mia, I can't help but think how hard this is going to be.  And I know I'll have that thought every single day from now until surgery day.

In a few short months...

...we will be headed to Children's for Mia's third open heart, Fontan surgery.

After Mia was presented at the cardiologist meeting on Monday, our cardiologist let us know that we could pretty much have Mia's Fontan early this fall (September or October) or wait until early summer of next year.

While some might wonder, why wouldn't you wait and put it off as long as possible?  That was not our thought.  Mia is strong right now, she is big enough right now, we know exactly what needs to be fixed right now, although she will be younger than some, we feel there is less risk right now.  We don't feel as though we want to chance it and wait with the possibility of something else happening.  Her left pulmonary artery may continue to narrow and need intervention if we wait.  She would need another cathiterization if we wait. Who knows what her heart function will do if we wait. While there are a lot of unknowns about after the surgery (no matter when she has it), we feel as though there could be even more unknowns in regard to her current health if we wait.

When we were told that our surgeon's first instinct was also to have it this year, we were on board.  That was our deciding factor.

After Mia had her second open heart, the Glenn, she was doing fabulous one day and we thought she needed a transplant the next.  There's no telling what can happen from one day to the next.

A scheduler from Children's will be calling me in the next few days to pick the actual date.  Another date that will forever be etched in my memory, just like October 20th and March 1st.  The dates of Mia's other two open heart surgeries.  I love my baby girl so much.  The first two times were extremely hard, but I think this one will be the hardest.  We have our own fears, and now she has hers.

The discussion around this decision was very difficult, but now we know.

On Pins and Needles

Tomorrow morning our doctor is supposed to be presenting Mia at a meeting with all the other cardiologists at Children's Hospital and they will (hopefully) be deciding when it is best for Mia's surgery to take place.  Right now, it sounds like our surgeon would prefer that it be early this fall in September or early October.

We don't think that much will be decided at this meeting that will change how our surgeon feels to where they would wait until next year, but you never know.  We haven't been very sure about much lately from what our cardiologist is telling us.

Although it kind of feels like we already have our answer, I feel uneasy about getting the call tomorrow that could tell us for sure.  That call could then lead to a scheduler calling to actually pick a date.  That scares me.

It's a double edged sword.  We want to know so much when the surgery will be so that we don't keep guessing or wondering.  But at the same time, once the decision is made, it means the surgery is going to be scheduled and it becomes very, very real.  Every time my phone rings tomorrow, I know my heart will leap out of my chest and I'll get butterflies in my stomach.

Cath Update

Yesterday was the big cathiterization day for Mia.  This procedure will tell us when her upcoming open heart surgery will be.  Everything went well and we got wonderful results.

We got to the hospital at 6 am and Mia was fantastic leading up to the cath.  She got some "goofy juice" about 30 minutes she was taken back and she was just hilarious.  Art and I got to back into the cath lab with her while they put her to sleep.  That was an interesting experience.  They only let you go back after your child is 1 and this was the first procedure Mia had since we've been able to.

We were updated every hour by phone on her progress.  Amazingly when we got the first call they already had her IV and breathing tube in and had already gotten the catheter in both her neck and groin.

Next call they let us know that they had made the decision NOT to balloon or stent anything and they were then going to be working on coiling the collaterals.  They also told us briefly that the pressures in her lungs and arteries all looked good.

The next update we got was from the cath doctor himself after he was finished.  They only had to coil one collateral (we were shocked).  Everything else looked good.  She does have narrowing of the left artery, but nothing that needs intervention immediately.  She also has narrowing where the superior vena cava and the right pulmonary artery meet.  It almost looks like a 45-90 degree turn that is slightly pinched.  They didn't feel it was necessary to intervene in that area either because it will be patched at the time of surgery.

We couldn't be happier with the results that they found.  Everything us much, much better than we were expecting.  So now the question still remains as to when her surgery will be.  Our cardiologist told us that it still could kind of go either way, this summer or next summer.  Because Mia has a fall birthday and they don't "elective" surgery in the fall, winter, and part of spring months, we're limited on when it can be done.

Our cardiologist is going to present Mia at the cardiology conference meeting on Monday, June 3rd (of course it so happens this coming Monday is Memorial Day, so it can't happen then).  At that time everyone will weigh in on what is best for Mia's care.  Her surgeon will essentially make the final call.  So we wait some more.  But ya know, I'll wait as long as is needed for them to make the best decision for Mia.  Especially now that we know, for sure, that she's doing very very well considering the circumstances!

It Seems To Be A Go

As of right now, 2:42 pm, on Tuesday afternoon, Mia's cath is still a go.  I have checked with our cardiologist and the schedulers at the hospital.  Hopefully I don't jinx it by typing this post.

I'm nervous.  I have butterflies in my stomach and I feel like I need to check and re-check everything.  Between Tuesday last week (day before the original cath) and today, I have cleaned our house, almost top to bottom.  I have to keep my hands and my mind busy.

Last week as we were approaching the original cath day, I was uneasy.  To the point that I had, what I would call, a gut feeling that something was going to go horribly wrong.  Perhaps it was that it all got cancelled and rescheduled, I don't know.  But I haven't felt that way for the past week.  I wouldn't go as far as to say that I've felt ease and contentment, but I haven't felt the on-edge feeling that I was having previously.

We will be on the road tomorrow morning by 5 am.  We have to be to the hospital at 6.  And Mia's cath is at 7:30.  Who knows how long it will take, ideally, it will be 2-3 hours long.  Her last cath lasted more like 5-6 hours.  We will try to update when we can.  Once everything is said and done, we should know within the next day or two when the doctors predict her Fontan surgery will be.  Even after the cath is over, and you'd think our fears and nerves will subside, they won't.  Then we'll be moving on to a whole new time of preparation.  Preparation for open heart surgery number three.

A day in our life

I wish there was a way for me to express in words the gamut of emotions that I felt today.  Here's a run down of my day.

I woke up early and double checked that I had packed everything that I would need for the overnight stay at the hospital we were expecting tomorrow night for Mia's cath.  Once Mia woke up, I found the last few remaining items of hers that we would need.  I got her medicine ready for the day and prepared it to bring along with to the hospital as well.  Just in case anyone was ever wondering, Mia gets 9 doses of medicine throughout the day.  Totally random, but many people have asked me!              

The rest of the morning was pretty routine.  Only thing that was different was that Art and I were trying to get ahead with our business in preparation for not working tomorrow.  We ate lunch and were playing outside when my phone rang.  "Children's Hospital" is what the caller id said and I was thinking it was just a reminder call for the cath tomorrow (as if I was going to forget).  Nope.  It was a scheduler telling me that due to unforeseen circumstances, Mia's cath was cancelled.  And that was it.  She didn't offer me a new date and time.  I asked her if our cardiologist was aware of this cancellation, she said that she probably was, but she'd have our card call me to explain further.

About 30 minutes later our cardiologist calls.  Yep, there's nothing she can do, she didn't know this was going to happen, it's been cancelled.  Why you might ask?  Now I feel for this family, I really do, but we were seriously almost 12 hours away from leaving our house to drive to the hospital.  A new baby is being born tomorrow morning that needs a cath right after delivery and consequently, we got bumped.  To when?  We still didn't know.

Now please realize, we have been in our house, not leaving other than for walks and to drive around the city to maintain our sanity, for almost 2 weeks.  We are all healthy, but we have cabin fever like you wouldn't believe.  Both of our parents had taken off of work to help watch Izzy tomorrow.  Not to mention we had mentally prepared ourselves for this cath.

3:00, 4:00, 5:00 pm rolls around and we still didn't know.  They had told us that there was a possibility of it still being tomorrow, if a different cath doctor was available.  Turns out, he's not.

Finally a little after 5, same scheduler as the first call, calls me.  She says that they cannot accommodate us tomorrow and it will have to be rescheduled.  Yep, I got that.  Again, I ask her when.  Not until mid-June.  You've got to be kidding me.  We told her that was unacceptable.  She told us that she'd have her manager call us to explain the situation to us again.  We didn't need it explained again, we needed a cath date sooner than mid-June.

I call our cardiologist again.  She can't do anything about it.  While I'm talking on the phone with her about how medically necessary it is for Mia's cath to be this month, more like this week, the scheduling manager calls back.  And thank goodness, with a new cath date and time.  Next Wednesday, May 22nd, still first thing of the morning.  She offered us a few gift cards to the hospital gift shop as a thanks for our accommodation.  Uh-huh, gift cards, that will make months of stress and now this huge added stress all better.   

So now we will endure another week of limited contact with the outside world, lack of sleep due to anxiety, and prepare all over for Mia's cath.  This is a day in our lives.

Mother's Day

Happy Mother's Day to all the moms out there!  We celebrated by planting some flowers and pumpkins in our back yard.  We played outside for a few hours.  And we've relaxed all day.  I didn't care what we did, as long as I was with my two girls and my hubby.  I love being home with my girls every day.  Some days I forget that.  Today was a good reminder of how lucky I am to be a mom!

Living in the Moment

We started our "lock down" 5 days ago and are still going strong.  We have only left the house to go on walks around the neighborhood.  As we walk I keep my eyes peeled for humans walking around that we need to avoid.  Yes, this is what life at our house has been like this week.  My husband's thoughtful grandparents brought us cupcakes the other day.  We waved at them through the window like quarantined animals!  My dad dropped off Mia's new prescriptions yesterday and we did the same.  As it happens, it seems so silly and I feel so overprotective, but oh well.  We're almost there and we're all healthy.  In less than a week Mia's cath will be done and we'll be moving on to the next phase of life.

We talked to our cardiologist on the phone at the beginning of the week.  Just had some questions we wanted to make sure were answered before the procedure.  She told us that potentially Mia's surgery could be within 6 weeks from the cath depending on what they find.  That hit Art and I hard.  We may be going from lock down right now to major lock down in another few weeks.  That scared me, but it's comforting to know that in less than a week we'll have answers to our burning questions.  Finally.

I've actually really been enjoying our time at home this week.  I've been drinking in my girls and the fun ages that they are.  I love seeing Izzy's imagination going wild and Mia exploring everything in our house.  I thought that I'd be brutally bored, but that's not the case at all.  It's nice having so much time, just the four of us, before our life gets interrupted with another open heart surgery.

As I'm typing this, Mia is standing next to me, talking to me in her own little language and putting stickers on a piece of paper.  I love her so much.  Her smiling face gives me hope and when I look at her my heart aches because I never want anything bad to happen to her.  I want to protect her in any way I can, I want to give her half of my heart.  Since I can't physically do that, I will instead give her my whole heart full of love. That sounded really cheesy, but it's the truth!

Packed Away

Last night I sold one of the last "baby" items that we still had in our house, our Pack N' Play.  I wasn't sad at all as I posted it on Craigslist and got it all cleaned up.  I wasn't even sad when the buyer came to pick it up. Suddenly this morning, I was standing in Mia's room, which now has lots of extra space, and it hit me that my girls aren't babies any longer.  Mia is running all over and saying a new word every couple of days.  Izzy is finishing her first year of preschool and is going to be starting soccer soon.  They're growing up.  My memories of them being tiny are packed away in my mind and I will treasure them forever.  Instead of packing the pack n' play away with those memories, it was time to let it go.  On to the next chapter!

Justification

When I dropped Izzy off at school today, I let her teachers know that she will not be in school for the week and a half leading up to Mia's cathiterization.  About a month ago, I had informed them of what was going on with Mia and that Izzy can, at times, be impacted by the additional stress and doctor's appointments in our household.  When I left her classroom today, I felt horrible.  It's not fair in so many ways, specifically for Izzy in this situation, but for all four of us as well.  As I was driving to run errands with Mia in the back seat, tears came to my eyes just thinking about what we have in store in less than 3 weeks and then whenever Mia's surgery will be.  I was feeling guilt for it affecting Izzy & Mia's day to day lives, I was feeling sadness because her teachers informed me that we will miss the Mother's Day presentation the kids have prepared, and I felt fear for what lies ahead.  I also felt this need to justify our decision to keep Izzy home from school and to seclude our family prior to the cath.  Then I thought, why should I have to justify it?  And I got angry.  If people can't understand why we are making this decision, well, I'd have a few choice words for them that aren't really appropriate.  I would ask them to please put themselves in our shoes for a split second.  Mia needs to be healthy and we all need to be germ free.  This will help her during her cath, it will help us to take care of her without worry that she'll get sick, and it will help her fight the germs we encounter when staying in the hospital.  For those people that need us to give justification, there it is.

Lock Down

All four of us have had a really bad cold, going on a week or so now.  I guess the one good aspect of this is that we're all sick at the same time.  Hopefully that way we won't keep passing it back and forth.  And better for it to happen now that a few weeks from now.

The doctors have told us that it would be better for Mia to be healthy (obviously) for her cath on May 15th.  We think that if she had a slight cold, they'd still do it, but to us, her being sick could potentially add risks that we can avoid.  So we're going to go on lock down.  We've done it before, for 2 weeks before her Glenn surgery.  This time we're going to plan on a week and a half, starting the first weekend in May.  Izzy isn't going to go to school, the girls aren't going to go to any stores or public places, Art & I will sanitize like crazy if we do need to run an errand, and we will not be having anyone coming in our home.  It may seem extreme, but we do not want to add any complications to any part of Mia's cath.

The last cath she had, pre-Glenn, she was under anesthesia for about 2 hours longer than planned because they were having trouble finding a site to use.  Meaning, they couldn't get the catheter in her vessel.  This means she had her breathing tube in that much longer and her body had to endure more pokes and prods than I want to think about.  The cold she has right now is awful.  Runny nose to high heaven and a bad cough.  Push a breathing tube down her throat in that condition?  No thanks.  So we're going to do what we can to prevent it.  We'll probably miss out on some fun family gatherings, but we have to set our priorities.  We are lucky in the fact that all our family lives near by and we can see them whenever we'd like.  We can reschedule plans or celebrate holidays at different times.  Izzy can miss a few weeks of her 3 year old preschool class.  Our priority is our little girl.  So much is riding on this cath.  We want Mia to be the healthiest she can be so that we can get the best results possible to move forward.

Happy Birthday Izzy!

It's official, my baby girl is 4!  How four years have already gone by since the day she was born is seriously shocking to me.  Parents aren't kidding when they say that time flies in regard to their children growing up.  Izzy has grown up so much in the past year.  Art and I were remembering just the other day that it was a year ago, when she turned 3, that we finally took away her trusty pacifier.  Seems like she was so little then, and now, all of a sudden, she's a big girl.  We keep track of how tall the girls are on our basement wall.  We measured Izzy yesterday and she grew at least 3 inches in the past year.  She's already half as tall as I am.  Just doesn't seem possible.  To celebrate?  We did what most parents of a 4 year old do, we had a vampire party!

Several months ago, Izzy wanted a "Brave" birthday party.  She had gotten the movie for Christmas and we watched it nearly every day.  I was happy about that choice because that would be a really easy birthday to have, lots of fun games and decorations.  Not too overly girly.  That all changed when we rented "Hotel Transylvania."  Art took Izzy to see it in the theater, but once we rented it and she saw it again...Izzy had her new obsession!  She loves the main girl character in the movie, Mavis (Dracula's daughter).  So then her new idea was that she wanted a vampire birthday.  I tried convincing her several times that Brave was a better way to go.  Nope.  She wanted Hotel Transylvania.

Definitely an original theme for a 4 year old birthday party!  Original in the fact that probably not many 4 year old girls choose that theme, and also original in that, it's extremely hard to find pre-made party supplies that are kid-friendly in a vampire theme.  So, Mommy to the rescue.  I made the invitations, those turned out to be quite easy.

Party favors = vampire decorated Tootsie Pops (in a graveyard, of course).

Bats made from toilet paper rolls for decoration.  We stuck with a red and black color theme, so we had red and black crepe paper and balloons.  Along with some vampire window clings I was able to find online (thankfully).

Daddy made the "Pin the Bat on Hotel Transylvania" game board.  Turned out great!  I also made a toilet paper bowling game that we didn't end up playing, but I taped ghost faces on each toilet paper roll and used an orange basketball (really supposed to be a pumpkin) for the bowling ball.

Art Photoshopped all of us (including the dog) into the Hotel Transylvania picture for the cake.  For snacks I made mini mummy hotdogs (mini hotdogs wrapped in crescent rolls), apple mouths (two apple slices with marshmellows for teeth) and I was going to make skeleton bones (pretzels with marshmellows on the ends, dipped in white chocolate), but they didn't come out very good.

All the hard work paid off.  Izzy had a fabulous party.  Here she is in her Mavis outfit.  Complete with her dracula cape, black and red tights, and red shoes.  It was most definitely an unforgettable party!

Jump Izzy Jump! Jump Mia Jump!

The other day after Mia woke up from her nap, Izzy wanted to go get her in her room.  I let her go in before I did so that she could by my big helper (knowing very well she can't lift Mia out of her crib).  After a few minutes of not hearing much, I decided to go investigate the situation.  Here is what I found them doing (click on the link below, I cannot for the life of me get a video to upload on here properly).

http://www.youtube.com/watch?v=q6mxO7eW5w8

I love how my girls interact with one another.  They're so funny together.  I see them getting into lots of mischief very soon.  It's so hard for me to believe that Izzy is going to be 4 on Saturday and Mia is going to be 1 1/2 next week.  It's going way too fast!  I treasure moments like these!

March/April Appointment

We had our appointment at Children's today.  All four of us trekked down to Broomfield with the hope that we would get a successful echo with Daddy, Mommy, or Izzy present.  It worked!  Daddy was the successful partner in crime during the echo.  We not only got a great echo, we got an EKG, pulse ox and weight.  Izzy and I have been playing doctor with Mia at home as well, so I think it all helped.  Couldn't have gone better!  Since we did get a good echo today, our cardiologist was able to really see what's going on with Mia.  Her function looked great, which is always fantastic news to hear.  They were able to see that she is forming a lot of collaterals.  Collaterals are basically little tiny arteries that your body creates on it's own to get blood flow from one area to another.  Mia's pulmonary arteries are narrow (both of them), so her body is creating these collaterals to try and get more blood flow to the lungs.  What it actually does is create a path that leads to nowhere.  So it takes that extra blood away from the area that it actually needs to go.  Not good.  During the cathiterization, those collaterals will be coiled off, or plugged up.

Our cardiologist told us today that based on what she was able to see by echo, she is thinking that Mia's surgery will be this summer.  That will still be decided for sure after the cath.  During the cath the doctor & surgeon will make the decision as to whether or not we should leave the pulmonary arteries alone and patch them during surgery, balloon them to enlarge them temporarily, or put in a stent.  The problem is that the left artery, in particular, is narrow along a large portion.  A balloon wouldn't help the entire area, only a small portion.  The stent would help until they can be patched, but the surgeon would prefer there not be a stent for surgery.  Until they're in there for the cath, that decision can't be made.  Because of the amount of collaterals that Mia has, our doctor is going to try to push up her cath.  It's currently scheduled for May 15th, but she'd like to have it in April.  It all depends on scheduling.

Today's appointment was a relief.  Because we haven't gotten a good echo for months, there's been a lot of guessing and speculation.  Today we got answers.  At least for the time being.  I think it put all our minds at ease.  We have a better picture (a quite literal picture) of what's going on in our little girl's body.  After the appointment we explored Pearl Street in Boulder and took advantage of the gorgeous weather.  Great day with great news!

"The only sure thing about luck is that it will change."

We have a few digital picture frames in our home.  One of them actually plays on our TV when we're not watching it.  I've seen all the pictures on it a hundred times, but as I walked by tonight, I saw this picture of Mia.

That is a picture taken probably within an hour after she got out of her first open heart surgery, when she was 3 days old.  As this picture was up on the screen, I thought about Mia's upcoming surgery.  We still don't know when specifically it will be, but it will happen.  No matter when, it will happen.  We have a doctor's appointment at Children's this Friday, hopefully the final appointment before her cath in May.

All of these thoughts were going through my head in the few seconds that this picture was on the screen.  My initial thought was, there's my baby girl, I love her so much.  Sometimes I honestly look at this picture and I don't even notice the massive breathing tube down her nose, or the wide bandage covering her beautiful chest scar.  I just see my little girl.  When my eyes do notice the medical devices keeping her alive on that day, I think ahead to seeing her like that again, as a toddler.  Then I usually have thoughts of fear, but I didn't today.  I think that had a lot to do with two of my very good friends.

I looked at this picture today and I thought about how truly lucky I am to have this little girl in my life.  Sometimes I tend to think too much about how unfair it is that Mia has half a heart or how drastically our lives have changed since the day we got her diagnosis and I forget to remind myself that no matter those things, I have a beautiful daughter.  As I told one of my friends today, we can't concentrate so much on what we don't have, we have to remind ourselves of what we do!  Which then led me to think about another conversation that I had recently about miracles.  Mia is my miracle.  So is Izzy for that matter.  Just stop and think about what it actually takes to make a child, and you'll realize that every single living, breathing child is a miracle.  In addition to that, it's a miracle in my eyes that Mia has overcome what she has.  It's a miracle the medical advances are what they are today.  Every day I spend with both of my daughters is a miracle and I'm so lucky to have them in my life. Thank you Nicole & Cristin for helping me to remember that!

Happy St. Patrick's Day!

We've had a fun time dressing in green the last few days and talking about how you pinch people if they don't have green on.  Holidays are so much fun right now with the ages of our girls.  Izzy eats up all the stories and traditions that go along with each.  Yesterday we went to the St. Patrick's Day parade in Fort Collins.  It's the second year we've gone and it's by far one of the best parades that we've been to.  This year the only downfall was the cold weather.  We didn't come very prepared and all of us were a bit frigid by the end!

 Waiting for the parade to start.

Mia stole our chair at one point. 

We didn't sit down much during the parade at all though!

The Call

Well today we got "the call."  Mia's cath is now scheduled for May 15th.  It will be at 7:30 am, first procedure of the day.  It all became real after I hung up the phone with the scheduler at the hospital and I lost it.  For the past week or so I've been walking around the house angry and on edge (sorry Art).  I've been anticipating that call, and then it came.  So much is banking on this cath (a procedure where they insert a catheter through Mia's groin and thread it up through her body into her heart to see her heart from the inside).  It will tell us everything we need to know about how she's currently doing and it will predict her future as to when her Fontan will be.  Pardon my french, but I'm scared shitless.  That is the only emotion that I'm feeling right now...

Mending a Broken Wing

This morning Izzy and Mia were watching the Tinkerbell movie called the Secret of the Wings.  It's about how Tinkerbell finds her long lost sister, but at first they can't be together because they live in different seasons.  Not to spoil the ending, but Tinkerbell breaks her wing and the two fairy's (Tinkerbell and her sister Periwinkle) matching, sparkling, magical wings mend the break.  As we were watching the part where Tinkerbell's wing is fixed through the love and magic they share as sisters, I seriously started to tear up.  It made me think if Mia's heart and how I so desperately wish there was a magic "fix" for it.  Before the fairies realize that the wing can be fixed by this magical sisterly bond, they say several times how a broken wing cannot be fixed.  Mia's heart can be mended, but it will never be fixed.  Although Izzy and Mia's sisterly love cannot mend Mia's heart, it is a love that is so magical.  Never thought that I would have that deep of a thought about a Disney movie!

Strength

A fellow heart mom posted this picture today on Facebook.

I absolutely love it.  People have asked me from time to time how I can be so strong when dealing with the things that we've dealt with for Mia.  The truth is, I don't realize that I'm being strong and I really don't have another choice.  I'm just doing what needs to be done.  I'm her mom.  I've also had people tell me that I'm an inspiration because of my strength and they don't know how I do it.  Well again, I do it because I'm her mom.  I would do the same for Izzy because I'm her mom.  I would do the same for Art because I'm his wife.  I would do the same for my parents because I'm their daughter.  I would do the same for my brothers because I'm their sister.  We give everything we have for the people we love the most.  I'm not doing anything special, I'm just living my life.  

After Mia's appointment the other day, I was feeling very down and lost.  My confusion turned into anger.  It's at those moments that I'm not strong, or at least I don't feel it.  I cry behind closed doors and I whine to Art (probably more often than I should).  While, on the outside, it may appear as though I'm strong every minute of every day, I'm not.  I definitely have my moments of weakness.  Friday was one of them.  Today is not a day of weakness, especially after I saw this picture.  Today I will show you all strength because I'm doing what I believe I do best, I'm being a mom, a heart mom.  

March Check-Up

Mia's appointment today was uneventful, almost too uneventful.  She wouldn't stay still for an echo, so we didn't get any good pictures.  All our cardiologist saw was that her function looked good.  So then the question was brought up as to whether we need to do a sedated echo before doing a cath in May.  Ugh.  All I can say is ugh.  It sounds pretty definite that Mia will have a cath done in May and that will essentially tell us all the information that we need to know.  They will decide at that time whether or not Mia's left pulmonary artery (which is quite narrow) will need intervention or if it can wait until her surgery to be patched.  Which then brings me to the next thing that I talked to our doctor about at length.  Mia's Fontan.  We thought it was pretty set for it to be in August/September of this year.  Now we don't know.  It will all be determined by the cath that's done in May, or the potential cath in May.  That didn't even seem certain after today's discussion.  I left today feeling very frustrated, lost and defeated.  It's so incredibly hard for me to not have a cut and dry answer with this.  Mentally I want to prepare myself for the fact that my daughter's chest is going to be cut open, her ribs cracked and her heart operated on, yet again.  But it's very hard to even begin preparing when we don't really know when that is going to be happening.  It could be happening in 5-6 months like we thought the plan was, or it may not be happening for over a year.  The surgery will not take place between November and March/April due to it being the height of flu season.  We knew there was a ton of uncertainty involved with Mia's care, but sometimes it is just too much.

One Year Ago Today...

A year ago today we were in Denver at Children's Hospital for all of Mia's pre-surgery appointments in preparation for her Glenn (second open heart surgery) on March 1st.  We stayed the night in a hotel across the street from the hospital.  Izzy kissed her sister and said her goodbyes the night before as we had to wake up extremely early the following day.  Makes me tear up just thinking about it.  I can't believe it's been a year.  Sometimes it seems like just yesterday, sometimes it seriously feels like eternity.  And what might you ask are we doing to celebrate?  We're going to Children's in Broomfield for Mia's monthly clinic appointment.  Hopefully the appointment will be uneventful.  With each monthly appointment, we draw nearer to Mia's Fontan surgery.  I am already dreading that day, but I also just want it to be done with.  Fingers crossed that the Fontan will be the last of open heart surgeries for quite some time.  But as we know too well, life is unpredictable...

Our Surgeon - Dr. Jaggers

We have had the honor of having a wonderful surgeon do both of Mia's heart surgeries and he will be doing her third as well, Dr. James Jaggers.  To our knowledge, he is the best that Children's Hospital has to offer for kids with HLHS and undergoing the three open heart surgeries that Mia will be; the Norwood, Glenn, and Fontan.  It never hurts to have a good review of a doctor that you see appear in a known publication.  Check out this link to see an article in 5280: The Denver Magazine.  Dr. Jaggers is in the article on page 4.

Top Docs 2012: Matters of the Heart - Meet the Top Doctors who keep an eye on the rhythms of the city.

Little Heart

Last year I wrote this poem for Mia.  I entered it in a local poetry contest and won 1st place!  It is something near and dear to my heart.  We have a copy of it hanging in Mia's room next to her Beads of Courage.  Our little girl is so strong and we love her more than this poem or any words can express.

Little Heart

The day the news arrived

Waiting – Hoping – Praying. She grows.

She enters the world.  And us, we

Start our new life, worrying.

Her tiny heart keeps beating

Pumping – Breathing – Living! She is here.

She thrives with hope.  And us, we

Prepare for what’s ahead, the miracle.

They work to keep her alive

Cutting – Stitching – Healing.  She recovers.

She fights with strength.  And us, we

Love her unconditionally, always.

She may have half a heart,

But our family is complete.

 Mia the day of her Norwood surgery - October 20, 2011

Mia 15 months old - February 2013

I Am A Heart Mom - Mia's Story

A fellow heart mom asked several moms if they would share their story in honor of CHD Awareness week which is February 7-14.  I started writing my story and got very emotional and I wasn't sure if I would finish it.  Mia has been through so much in her almost 16 months of life, the least I can do is write about her story with the hope that it will teach someone something about HLHS or CHD's.  Here is my story:

After having two miscarriages, my husband and I were thrilled once we made it through the first trimester of the pregnancy with our second child.  My regular monthly check-ups were going well and we were anxiously anticipating the 20 week ultrasound to find out the gender of our growing baby.  When we went in for the ultrasound at 20 weeks, our baby was laying in such a way that the ultrasound tech was unable to tell the gender and casually mentioned that she didn’t get the greatest view of the heart.  So we went back again at 21 weeks to have the ultrasound redone.  We found out then the exciting news that we were having our second girl!  But still, not great pictures of the heart.  We went back again a week later and this time around the ultrasound tech believed that she was able to get decent pictures of the heart.  We felt slightly reassured until my doctor himself called me a day later.  He told me that he had a chance to look at the ultrasound pictures of the heart and thought that, although things were probably fine, he wanted us to see a perionatologist in Denver to double check everything.  We went the next day.

I was scared, very scared.  As they were doing the ultrasound, I just kept wondering why the tech was being so quiet and not explaining any of the pictures to us.  We did ask her and she told us that the doctor would go over everything with us once all the pictures were taken.  The doctor came in and I think that I knew something was not right.  She told us that the baby had a heart defect, but she wasn’t positive yet which one it was.  She gave us two different options.  One was HLHS and the other… well; I cannot for the life of me remember the name.  She also told us that with these types of heart defects it’s possible that the baby might also have Down Syndrome.  My husband and I made the decision to have an amniocentesis done that very day.  Then the next day we made an appointment to see a pediatric cardiologist. 

We made the long drive to Lonetree the next day and it was confirmed that our baby girl had Hypoplastic Left Heart Syndrome.  The doctor gave us three options.  The three surgeries, an abortion, or compassionate care.  I remember my immediate thought being, I can’t do this, I can’t make this choice.  My husband and I went home to both sets of our parents watching our older daughter, Izzy.  And what about her?  What about our Izzy?  How does she fit into all of this?  She knew all about the baby in mommy’s tummy.  She understood she was going to have a sister.  How could we take something like that away from her?  Take that away from all of us?  I could feel our baby kicking inside of me and I remember blaming myself. 

After much discussion, my husband and I decided that we needed to wait until we got the amniocentesis results before making our final decision.  A week, we had to wait a week.  Throughout that time, we knew our decision.  She was our baby and we wanted her.  We wanted to give her the best possible chance at life.  After our results came back showing that she had no other known defects, we proclaimed that we were moving forward with the pregnancy and that our Mia would be undergoing three open heart surgeries. 

A few weeks later we made the choice to get a second opinion at Children’s Hospital Denver.  We knew that the results of the ultrasound wouldn’t change, but just wanted to know all of our options, not to mention we had heard tremendous things about Children’s Hospital.  There we met our current cardiologist, Karrie Villavicencio.  She was our savior.  The first cardiologist we saw was an excellent doctor, but he did not have the caring personality that Karrie does.  At that appointment we had our older daughter Izzy with us.  We felt loved and cared for in so many ways and we felt like they cared not only about our growing baby, but also about us and Izzy.  We knew that was where we were meant to be. 

The months went by and I tried to enjoy my pregnancy, all the while fearing the unknown.  A week before my due date, we “moved” to the Ronald McDonald House in Aurora.  I had a c-section with Izzy and had another planned c-section set for October 17, 2011.  I delivered Mia at University Hospital.  We thought that she would be able to stay with me there for the first day.  It ended up being a matter of hours.  Her first echo in the outside world showed that she had fistulas growing around her tiny heart and that could complicate the Norwood surgery.  She was taken to Children’s Hospital within the first 6 hours of her life, and we were separated.  Her first catheterization was done the next day and again, my husband and I had to make a hard decision.  The fistulas that they discovered on echo were also seen by cath and could prove to add complications to her surgery.  We had to make the decision to go ahead with the Norwood or think about a transplant.  We chose the Norwood. 

When she was three days old, she had her Norwood, October 20^th.  I was released from the hospital that morning, on my own accord, because I was not going to be an admitted patient on the day my daughter was having open heart surgery.  I didn’t care that the hospitals were literally a few blocks apart.  I was going to be there, for everything.  Especially because it was October 20^th.

October 20^th, oh the significance of that date.  In 2003, when I was 22, I had a stroke, on October 20^th.  I almost lost my life due to sheer bad luck and now I had to hand over my baby for the first time on that same date.  While that may not have been a good memory associated with that date, in 2005, my husband proposed to me, on October 20^th.  I have a love/hate relationship with October 20^th.  But I cannot dwell on why I dislike that date, I need to concentrate on why I love it. 

We sat in the waiting room and Esther came out every hour to update us on Mia.  I was so hopped up on pain killers that day and had been the two previous days, that I really don’t think I understood the significance of what was happening to my daughter.  My husband had to sign all the waivers and talk to the doctors on his own while I recuperated in the hospital.  Finally, they came out to tell us that her heart had restarted and the surgery was a success.  Relief set in, we had made the right choice.  Our baby was alive.

Mia had her rough days, as did we all.  The hardest thing for me during this time was dealing with what was going on with Mia, while also trying to care for our older daughter Izzy.  She was with us at the Ronald McDonald House the entire time.  She knows no different as to how a sibling is brought into this world.  But she does know that not everyone has a “little heart” like her sister does. 

We came home on November 14^th.  Mia no longer needed oxygen, but she did have a G-tube placed while we were at the hospital.  One of her vocal chords was damaged during the surgery and she could not eat by mouth.  We still question whether we made the right choice with the G-tube, but she thrived between her Norwood and Glenn surgeries, so we can’t question ourselves too much. 

Before we knew it, the Glenn was here.  March 1^st was the date. 

Again as we sat in the waiting area, Esther came out and updated us hourly.  Everything went as planned.  Once in the CICU, Mia seemed to be doing well and they decided to try and let her breathe on her own.  They shut off the oxygen and her sats plummeted.  I just watched the screen in horror as every nurse on the floor ran to my daughter’s bedside.  That was a very scary moment, very scary, but they got her back on the oxygen machine.  Mia tends to do things all in her own time. 

With each day we were in the hospital after the Glenn, Mia dramatically improved.  There was talk of us going home only 7 days after her surgery.  Before we could leave, they had to do one more echo. 

This time around, my husband and I took turns commuting to Denver from Loveland so that our older daughter could have more normalcy.  I was at home with Izzy when my husband called.  The echo was not good.  There was a dramatic decrease in the function of Mia’s heart.  It looked as though it was leading to heart failure and we were going to sit down with a transplant doctor the following day to discuss putting Mia on the transplant list.  What?  How?  So fast?  It didn’t make sense.

 

Mia was the poster HLHS baby.  She handled everything so well.  She was so strong.  No one saw this coming.  And so suddenly.  We talked with the transplant doctor the next day, he gave us no hope.  He told us that in all but 1 of the cases that he’d seen like Mia, the child ended up having a transplant.  That wasn’t an answer for us, that wasn’t what we wanted to hear, we weren’t ready to head down that road yet. 

Mia was started on several new medications to keep her heart pumping.  We were basically playing a wait and see game before putting her on the transplant list.  We got to go home after 10 days in the hospital.  After that, we were at the hospital every week and then every other week for a few months.  We had a doctor or nurse calling us at least once a week to review the heart failure warning signs with us and to check on Mia.  A home nurse also came to our house to ensure that she was ok.  We went for an echo each month with the hope that we’d see signs of improvement in Mia’s heart function.  Our cardiologist, Karrie, thought that she was seeing slight improvement, but the transplant doctor was not.  We call him Dr. Doom. 

Then, a miracle.  I took Mia to an appointment at the North Children’s Hospital in Broomfield.  Went through all the regular appointment steps, did an echo.  Karrie came in the room and was smiling the biggest I’d seen her smile in awhile.  Mia’s heart function had improved.  Was I hearing correctly?  My Mia, the one that seemed destined to have a transplant within the year?  My Mia?  Yes, my Mia.  When Mia’s decreased function was first detected they labeled it as severe.  Now, Karrie told me that she’d rate it mild to moderate.  We were definitely headed in the right direction on the heart dysfunction scale. 

I didn’t cry tears of joy until I got into the car to drive home and it sunk in.  She was getting better.  I called my husband, he didn’t answer.  Amidst tears, I left him a message, “It’s good news, it’s good news.  Mia’s function has improved!”  He video taped my phone message and we listen to it every once in awhile.  That was a good day.  A really good day. 

A few months later we had our last appointment with Dr. Doom.  I looked at him and said, “When we needed hope, you didn’t give us any.  Thank you for what you’ve done for us, but please, give other families hope.  Tell them about us, and tell them that Mia got better.  Now you can tell them that you know 2 kids with severe heart dysfunction that got better and didn’t need a transplant.”  That man looked at me like I was a ghost.  I don’t know that he ever had someone tell it to him straight like that.  We have not had an appointment with him since then and I hope it’s a long, long time before we have to talk to another transplant doctor.  Mia needed time to heal after her Glenn, plain and simple.  Not everyone was willing to give her that time, but she needed it. 

Over the summer, Mia had her G-tube removed.  Her hole didn’t close on it’s own and got very infected.  She had to have it surgically closed.  That was scary because we didn’t know if the anesthesia would affect her heart function at all.  It didn’t.  Thank goodness.  We only used Mia’s G-tube for about 6 months, if that.  Did she truly need it?  I don’t know, but she is where she is today because of every event that happened, so I can’t dwell on it. 

And here we are now.  Mia had a sedated MRI a few months ago because she simply won’t stay still for a complete echo.  The MRI showed that her left pulmonary artery is quite narrow and it will need to be patched during her Fontan surgery.  We are hoping that nothing will need to be done before her cath that will be in May/June in preparation for the Fontan.  Then her Fontan is most likely going to be in August/September of this year.  6 months, we have 6 months.  That’s not enough time before we have to hand over our baby again.  Except this time she isn’t a baby and it’s going to be so hard.   She’s so aware of everything.  She understands when something hurts.  She’s afraid of doctors and the hospital.  I’m not ready, but I don’t know that I ever will be.  This is the life we chose and I don’t regret a single decision we’ve made.  

January Check-Up

Mia had her appointment at Children's today.  I'm happy to report that the appointment went great and we were able to get some echo images that we haven't been able to get the last few months!  They were able to see her pulmonary arteries, which is our biggest area of concern right now.  Our cardiologist didn't think that there was any further blood restriction than what they saw in the MRI that Mia had several months ago.  Ahh, huge sigh of relief.  We were half expecting that Mia would need to have a sedated procedure in February, and we were reassured today that she will NOT need to have one done.  Ahh, another huge sigh of relief.  So as of today, the plan remains that Mia will have a cath done in May/June and her Fontan (3rd open heart) in August/September.  We will still be going to Children's monthly until then.  Now I can hopefully rest well until her appointment next month!

Unconditional Love

Izzy is sick with the stomach flu...again.  We just cannot get healthy this year.  As she lay on the couch watching movies all day today, Mia walked around the house looking lost.  She didn't have her sidekick to play with.  Every once in awhile she would go in the living room, point at Izzy, and say "Ow."  To which I would reply, "Yes Mia, Izzy is sick, she has ow."  The look on her face as she said that was of genuine worry.  The love that our two little girls share for one another is unconditional and simply precious.  Izzy tells me quite regularly how much she loves Mia and how she'll be Mia's big sister forever and ever.  They have a bond that they will never have with another person and it melts my heart to watch them together.

Dear Mr. President

Every month we get several medical bills or E.O.B's (Explanation of Benefits) from our insurance company.  Since we have long met Mia's deductible for 2012, we no longer get an itemized list for each bill, we just get a statement showing the amount billed to our insurance.  For several months we've been getting a statement showing an amount that I couldn't pinpoint.  So finally I broke down and called the medical supplier the other day.  Turns out, we have been getting billed (or in this case, our insurance has) for a liquid oxygen docking system.  Ok, for all those heart parents out there that have had kids on oxygen, you know what I'm talking about.  And anyone that was in our home while Mia was on oxygen, you more than likely saw this massive tank sitting in her room (see example below).  See that big metallic tank sitting next to elderly man in this picture?  Yep, that's what I'm talking about, not hard to miss.

Mia was on oxygen for about a little over a month after her second surgery.  We had to get a "discharge prescription" or discontinuation from our doctor in order for that tank to be picked up from our home.  I think I would kind of notice if it was still just sitting around.  Yet this medical supplier, let's call them "Sapria" just for kicks, does not seem to believe that we no longer have it and so they continue to bill our insurance.  I even had our cardiologist herself, bless her heart, call them today to tell them it was discontinued long ago.

So, Mr. President, if you just happen to be reading this, please do something about the health insurance situation in our country.  It is not MY fault that the medical supply company did not record this pick up correctly on their end.  Therefore, it should not be MY responsibility to fix it or MY money to pay for something that we no longer possess.  The insurance company, the medical supplier, or anyone for that matter is more than welcome to come search my home to see that I did not simply misplace a gigantic oxygen tank somewhere.  I am very diligent about my daughter's care and anything to do with her insurance and I was trying to be responsible by bringing this mishap to someone's attention.  In return, I may as well have been called a liar because I was not believed when I explained that we no longer have this equipment in our home.  There have been days in the past, and I know there will be days in the future, when my daughter has to fight for her life.  On those days and all other days, I should not have to worry about fighting with an insurance company, I should be worrying about giving her strength to fight through another day.