Just one more…..

Abnormalities of the cardiovascular system are common in Down syndrome. Approximately half of all infants born with Down syndrome have a heart defect. – See more at: https://www.ndss.org/Resources/Health-Care/Associated-Conditions/The-Heart–Down-Syndrome

 We have one more beautiful story to share as we wrap up CHD Awareness Week.   

My husband and I had three children.  I loved being a mom so much that when our youngest child reached preschool age I knew I wanted to have just one more.  I wasn’t ready to let go of the baby stage forever yet.  They were all growing up and becoming so independent.  I honestly felt a little lost when no one needed me to change their diaper, spoon feed them, rock them to sleep or hold their hand as they walked down the stairs.

We had three healthy pregnancies behind us, uncomplicated deliveries and children that were thriving.  The fourth time around should be easy, right?  We knew what to expect and had it all planned out.

Or, did we?  Despite several ultrasounds that allowed us to catch a glimpse of our beautiful girl… nothing out of the ordinary was suspected.  Everything was going according to our plan until it became time to deliver Ameliah.  The umbilical cord was wrapped around her neck.  Everything went so fast.  She came out a bit swollen and bruised but seemed to be doing okay despite her chaotic entry into the world.

The nurse handed her to me to hold for the very first time.  As I settled in to snuggle with my sweet baby girl I looked down at her and just knew.  I turned to my husband and said “Honey, she looks like she has Down syndrome”.  I knew nothing about Down syndrome.  I definitely didn’t know that there were certain health issues that were common for people with Down syndrome.  I only knew that I loved my little girl and nothing else mattered.

We spent the next two days taking care of our new baby, battling jaundice and trying to be proactive about anything and everything we could.  We realized Ameliah was not eating well and was extremely sleepy.  It was decided that she needed to be transferred to another hospital.

I will never forget that night.  The night I was sitting next to my baby in the NICU with tears streaming down my face.  We spoke with a pediatric cardiologist who gave us Ameliah’s initial test results.  He told us Ameliah had at least two congenital heart defects and that they were still trying to confirm whether or not she had a third one.  When he finished explaining the details to us I only had one question for him.  “Can it be fixed?”  To which he replied “yes”.  That was all I needed to hear.

Unfortunately, it was not as straight forward as we thought.  We quickly learned that she had more health issues than just her heart.  She was transferred numerous times between different hospitals.  Some of them were hours away from our home and our other children.  She required four surgeries before they even considered the open heart surgery she would need.

It was two and a half months later and we were still in a NICU.  Finally, it was decision time.  Would they let her come home?  Or, would they need to repair her heart first?

How did we get here?  Why was this happening to us?  This wasn’t anything like what we had planned.  We were desperate to get our family back together again.  We had been apart for so long and I was at my breaking point.  We didn’t get to celebrate Christmas as a family.  We missed our 5-year-old’s birthday.  We missed New Year’s Day and Valentine’s Day.  Would she be home in time for Easter??  PLEASE, let her be home for Easter!!

After more than a dozen echocardiograms the doctors were never able to get a clear picture of her heart.  So, Ameliah was scheduled for a heart catheterization.  This procedure revealed that she did have a third congenital heart defect.  An aortic coarctation.  The combination of her PDA, VSD, pulmonary hypertension and now this meant she needed to have this surgery before we had any chance of bringing her home.

I was terrified.  Even though she had already been through some really scary stuff… this was the scariest by far.  I didn’t know if her tiny little body could handle another big surgery – especially so soon after all of the other ones.

My husband and I took turns breaking down and being strong.  Thank goodness we were never broken down at the same time.  Our relationship changed.  It grew stronger.  There was no other choice.  We would do anything for Ameliah and we had to get through this – together.  We had to be strong for her.

Within a few days Ameliah was transferred to a Pediatric Cardiac Care Center.  This was the first time Ameliah wasn’t in a NICU.  Although we were in for one of the most difficult rides of our lives – it felt like we had just arrived in Disney World.

I had been in a very different world for the last two and a half months.  A world that I never knew existed.  A place where simple things like babies eating and breathing on their own were not taken for granted.  Where mommies had to say goodbye to their babies and leave them in the care of nurses because they couldn’t stay there 24 hours a day.

Doctors rounds, shift changes, frequent trips to the lactation room and the occasional need for sleep seemed to constantly pull me away.  A mother is supposed to be with her newborn.  I hated saying goodbye and leaving her.  Whether it was for a few minutes, hours, or sometimes days… it tore my heart to pieces to walk away from her.  It never got easier no matter how many days had passed.

Now, I didn’t have to walk away.  I got to spend the night with my baby for the first time since she was two days old!  Our other children got to visit her and hold her.  We spent time together as a family and took lots of photos.  Our hearts were still heavy but we were smiling.  This opportunity to be together before her surgery was so important to us… just in case we weren’t able to be together afterwards.

The morning of her surgery came and I was full of mixed emotions.  I was happy and hopeful that she would finally have a working heart.  I was scared that things wouldn’t go well.  I felt guilty that I was signing yet another form saying I knew there was a chance she could die and I was agreeing to let them do it anyway.

I wanted to warn her somehow.  “Hey, sweetie.  Today is going to be a really tough day.  Mommy and daddy love you so much.  We will be here waiting for you and hoping to see you when it is all done.”  So much waiting, wondering, worrying, hoping and more waiting.

When she finally came off of the elevator from the operating room it was the most beautiful sight I had ever seen.  She was alive.  She was covered in bandages and seemed to have more IV’s than I could count with all of my fingers and toes, but she was alive.

The next few days were critical.  There were ups and downs – but mostly ups.  She started to eat and breathe on her own.  She gained a little bit of weight.  She had a new chance at life.

Nine days after her surgery we took our almost three month old baby home for the very first time.  I had all of my children and my husband under one roof with me that night.  It was an incredible feeling.

A few weeks later we were coloring eggs and setting out our Easter baskets.  We had made it!  We were finally celebrating our first holiday together, in our home, as one big happy family.

Thank you so much Kristen for sharing such a scary time in your sweet girls life. I think everyone will agree she makes that “zipper” look look. We look forward to seeing what she counties to bring to the world.