6 Weeks Post-Op

We had a follow-up appointment with Riley’s cardiologist this afternoon.  It was the first echocardiogram for her since leaving the hospital last month.  Her first follow-up with cardiology was a couple of days after we returned home and it was mainly to make sure that her sternum was lined up correctly and that there were no signs of infection.

Normally I do not get nervous when it comes to office appointments, but for some reason today I had butterflies in my tummy while we were getting ready to head to the doctor’s office.  I know that she looks great, and hasn’t given us any reason to think there was something wrong, but then again, you’ve never been able to tell there was a problem just by looking at her.  I guess I was nervous because it was the first serious checkup to make sure everything was okay since the surgery. 

Riley on the other hand was all smiles and sassy poses this morning, as if to say, “I’ve got this mommy!” She is such an amazing little girl.  I am in awe of her.  She is happy, strong, smart, and beautiful!

            

Riley was a little nervous once she realized we were at the doctor’s office, but that didn’t last long.  It was “Princess & Pirate” day so there were pretty decorations everywhere and all of the staff was dressed up.  She got to pick a prize from the treasure chest at the downstairs reception area, and she picked a pretty purple bead necklace.  The receptionist also gave her a sticker, and her invitation to the royal celebration in the cardio department and directed us to take the Princess elevator to our destination.

There are two elevators and one was decorated with pink and silver ribbons and the words “Princesses Enter Here” over the top.  The other was decorated for boy pirates, but we only paid attention to the princess elevator.  When we got up to the cardiology department, the receptionist gave Princess Riley her very own Princess bracelet, complete with sparkling silver crown.  It was truly amazing to see all of the details the staff had put in place to make a doctor visit a magical experience for the children.

We had our echocardiogram first, and Riley began to panic a little when we first went into the room, but once I got settled with her on my lap and the tech put Frozen on the television she calmed down.  In fact, this was the fastest echo we have ever had done.  Riley didn’t fight, squirm, cry, or push the tech’s hand away like she normally does.  She was really happy when Daddy surprised us by walking into the room.  He had been working, so we didn’t expect him to be there today.  The echo went so fast that we ended up waiting longer than normal for the doctor, but that was okay because Mommy brought animal cookies and Gatorade to snack on and we watched Wreck It Ralph on Mommy’s phone while we waited.

When the doctor came in, we knew it was good news immediately.  She was very happy with the way things look, and told us that we can stop one of the medications that Riley has been on since the surgery.  An even better indication of how good things are is that we do not have to go back for 2 months instead of the normal 4 weeks!  It was such a relief!

Our warrior princess is doing great, and we could not be more proud of her!

Our journey so far…

August of last year, my husband and I had a plan.  I was recovering from spinal surgery, and he was driving a semi truck over the road.  Our 18 year old son had decided that he was moving out, so we moved into my parents’ house with the plan that as soon as I was fully recovered from surgery I would join my husband on the road.  It would be nice to spend the time together, and I would be able to see parts of the country that I had never been lucky enough to visit.  It was a good plan, as far as plans go.  Little did we know that our lives were about to change in ways we never imagined.

On October 17, 2012, at a routine doctor visit, I found out I was pregnant.  Yep, 18 years after the birth of my son, I was pregnant.  My initial reaction was stunned disbelief.  How could I be pregnant?  I mean I know how babies are made, but seriously, how?  After the shock wore off, I went on to have a perfect pregnancy.  There were no problems, and everything went beautifully.  On June 14th my husband and I welcomed our beautiful baby girl to the world.

She was perfect, 10 fingers and 10 toes all in the right places.  She was beautiful beyond words, and we were in awe of this perfect little angel.  We basked in the joy of finally getting to meet her, all the while trying to hide how scared we were to be starting over with a new baby.  Were we up to the task? Or were we in over our heads?  Raising a girl was going to be a very different experience to our history of raising a boy.  So many emotions, hopes, and fears;  I felt I would burst from it all. And then it happened.

The nurse took our baby to get her first bath and they moved me into my room.  My husband, family, and best friend were with me when there were codes called over the speaker system, and the nurses who were in the room with us ran out.  All we knew at that point was that there was a baby in trouble in the nursery.  I remember thinking that I would hate to be one of the parents of that baby and I was so lucky because our daughter was beautiful and perfect and healthy.

A few minutes later, people started coming into my room.  I was a little out of it from the pain meds, so I really can’t tell how long it had been.  It turned out that the baby in distress was our baby girl.  At 1 hour and 10 minutes old, one of the nurses in the nursery noticed that our baby girl had started turning blue.  Long story, short:  she was born with a heart defect called tetralogy of fallot with pulmonary atresia.  She was going to require surgery and specialized care that she could not get locally, so they were going to have her air lifted to Shand’s hospital in Gainesville, FL., some 350 miles away.

All strapped in and ready for her flight to Gainesville, June 15, 2013

Suddenly our world came crashing down around us.  After the initial shock began to wear off, we went through so many emotions:  anger, fear, and self-pity just to name a few.  How could this happen?  What did we do so wrong?  What did our beautiful baby girl do to deserve this pain?  Then we began to worry about what was going to happen in the rest of our lives.  

My husband had just started a new job four weeks earlier.  Would they keep his job for him while we were in Gainesville for an unknown length of time?  How would we afford to live in a strange city where we knew nobody?  How were we going to survive?  How were we going to take care of our baby? So many questions, fears, and emotions in such a short span of time is quite overwhelming, let me tell you.

Arrangements were made, and we followed our daughter to Gainesville.  We were lucky enough to get a room at the local Ronald McDonald House after only a few days of waiting, and we began the wait for our daughter’s surgery.  When she was just 11 days old, our beautiful baby girl underwent open heart surgery.  Those hours were the longest of our lives, and our relief was immense when the news came that she made it through with flying colors.

Afternoon of 1st open heart surgery. The most difficult thing any parent will ever see.

We spent a total of four weeks in Gainesville.  Life was surreal in the bubble world between the hospital and the Ronald McDonald House.  We met a lot of other families who were also going through the worst times of their lives, and we learned a lot from the whole experience.  It only took a day or two for us to realize that as bad as we had it; as serious as our baby’s condition was, it could have been so much worse.  The people we met all had something to teach us about strength, love, and life in general.

Don’t get me wrong, I would be much happier if our daughter did not have a heart problem.  I would much rather to never have had to go to Gainesville in the first place.  But at the end of those long four weeks, I think that I came home a better person for the experience.  It was humbling to see the kindness and support perfect strangers were willing to give us on a daily basis.  It was amazing to see how much the doctors and nurses truly cared for our daughter.  And I am still in awe at how strong our little fighter is; at how happy she is, and how much joy she brings to our lives every day.

Riley: age 5 months

I decided to share our story here, not to get sympathy, but in the hope that another family who is just starting this frightening journey might find our story and gain hope and comfort from knowing they are not alone.  Our daughter has a congenital heart defect.  She has already had one open heart surgery and will have to have at least two more in her life as she grows.  But those are worries for another day.  Today, she is happy and playful and a joy to be around.  She is a normal little girl, who happens to have a scar on her chest.  As horrible as it felt that first day, and as rough as the first few weeks were, everything turned out just fine.

I would welcome any comments and or questions you might have.  And with that, I will say farewell for now.