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.