Harper- Open Heart Surgery & Down Syndrome

Harper was born in August of 2016, 9lbs 14 oz (we have mammoth children and I’ll shock you when I say she was my smallest!).  We knew she was our last baby and to keep it extra fun, we thought we’d have a surprise and not find out the gender.  I was 90% positive that after 3 boys, we’d have another and hardly entertained the fact that a girl was even possible for us.  My husband told me from the start he knew she was a girl.  It’s almost annoying how he’s always right!

I knew the moment I met Harper that there was something special and different about her.  And I knew she had Down syndrome.  I can’t explain it more than by calling it mother’s intuition, but I know that even Keith and I exchanged a glance that confirmed he knew it too.  He didn’t know what I knew at the time, but he could feel it.  Since having Harper, I’ve heard many other stories where parents knew, even before birth.

I want this post to mainly focus on the topic of open heart surgery, but if you’re curious about our birth story, you can find here.

With the surprise of Harper’s diagnosis, also came the complete SHOCK of her heart defects.  I’d had multiple ultrasounds, they’d always reviewed her heart and had never seen a problem.  How was it possible that they never saw something they keep calling a LARGE VSD?

I remember trying to understand what they were telling me was wrong with her heart and just kept saying to myself, I can handle the Down syndrome diagnosis, why do we have to go through this too?

The heart issues absolutely terrified me.

We were in something they called the “Special Care Nursery” which was just a step above the regular nursery and not quite the NICU.  I kept thinking that it couldn’t be that bad if we weren’t in a NICU.

Harper did amazingly well in our 5 day stay at the hospital.  She had been put on oxygen due to her breathing and O2 sats dipping into the 80’s but once they figured out it was due to a heart defect, we learned her sats could be in the 80’s and considered fine.  In no time, she weaned off the oxygen and didn’t even dip out of the 90’s.  We had a phone conference with a cardiologist who discussed what needed to be repaired with her heart and that surgery would be sometime between 3 – 6 months.

Honestly – once the diagnosis and heart defects hit, I was in a daze.  I’m not about to sugar coat it for anyone, it was a very real, very scary, very HARD time.

It was great to be home, but there was constantly “Down syndrome” and “open heart surgery” running through my head.  I cried A LOT.

Could I be as strong as she would need me to be?  Could I really do this?

I asked my husband on one of the worst nights if I would always look at her and think “Down syndrome”.  I felt guilty for saying that out loud.  I felt guilty for being so sad.  I felt guilty for not wanting to deal with all the “extra” that comes with having a child with special needs.  I felt guilty for feeling guilty when everyone was telling me it was normal.

The guilt was all consuming.

Then slowly, and without really thinking about it, the emotions started to subside.

Harper was a dream for a baby – so easy and pleasant.  Her brothers were so incredibly drawn to her, and that hasn’t changed in 6 months.  I thought the newness of a baby would wear off, but she lights them up every bit as much as they do that for her.  Could it be?  Was she really just like any other baby? (And secretly even better because she was so calm!).  And she was just so dang CUTE!

 

The hardest part of having a baby with a heart defect for me was that she didn’t have any outward signs.  I would look at her and think how could anything possibly be wrong?  You can’t see her heart not working properly, so it almost made it difficult to deal with.  I think I was in denial because we thankfully didn’t have any other issues with it.  She was the healthiest baby which I consider an incredible blessing.

However, that denial I was having had me totally unprepared for the day they called to schedule her surgery.  We had thankfully been able to make it to almost 6 months and I knew it was coming, but when I got that phone call, I realized how completely unprepared I was.

As the surgery loomed closer and closer, people would tell me how brave and strong I was.  I appreciate that people felt that way about me, but I was in this place where I just wanted to say “Well it’s not like I have a choice” with all the snark I could muster.  I’m afraid I wasn’t very pleasant in the days that led up to Harper’s surgery.  My mama heart was laid bare for all to see and felt every bit as broken as Harper’s actually was.

A week before surgery, Harper had a sedated echocardiogram so they could get really clear pictures of her heart and what needed to be prepared.  This is honestly the first time I feel like they gave me ALL the details of what was wrong and needed to be fixed.  She had what they always said, the large VSD, but I was now hearing things like “complete AV canal defect” and “ASD” and “cleft mitral valve”.

We had amazing doctors who explained things well and in detail to us, but it was like we would leave those appointments and I would be in such a haze I would immediately forget something.   Dr. Google and I became fast friends which is fantastic we have so many resources available and terrifying when you happen upon too much information that you didn’t need or want.   I was glad she seemed to respond well to the sedated procedure, but seeing her in the recovery from that had me petrified of how I would handle seeing her after her surgery with all the tubes and wires.

Could I be as strong as she would need me to be?  Could I really do this? This was my mantra once again.

Living in Utah, we had our surgery scheduled at Primary Children’s in Salt Lake.  I’d only ever heard amazing things about this hospital and felt very comfortable having her surgery there.  I hate how so often with procedures these days you barely meet the surgeon.   I kept worrying that I just had to place all of my faith that my daughter would be okay in this person I hadn’t had any experience with.

At our pre-op appointment, the surgeon was actually able to meet with us.  He discussed the entire procedure to us in detail, down to the point of how long certain things would take.  He answered all of our questions, calmed all of my fears, and I knew Harper was in the best hands.

The day of the surgery, everything felt a little surreal.  We spent time with Harper getting her in her hospital gown and meeting with nurses and the surgeon visited once again.  I kept watching the clock tick down to the time I knew they would be taking her and silently praying that all would be well.

Could I be as strong as she would need me to be?  Could I really do this?

Harper snuggled into me as we waited and fell peacefully asleep.  I think she knew it would be easier for me if she was calm and peaceful.  Somehow at just 6 months old she always has a way of doing or being exactly what you need, in the moment.

Then just like that, it was time for her to go back.  They let me carry her down the hall until the point where the anesthesiologist would take her back.  He was the gentlest man, who knew that would be the hardest part for me.  I kissed her, my husband kissed her, and then I physically had to will myself to hand her over.  I could not have stopped my tears for anything in the world.  In that moment everything was real.  The moment that I knew would happen since the day after her birth was really here.  Could I be as strong as she would need me to be?  Could I really do this?

I could not have stopped my tears for anything in the world. In that moment everything was real.  The moment that I knew would happen since the day after her birth was really here.  Could I be as strong as she would need me to be?  Could I really do this?

In that moment everything was real.  The moment that I knew would happen since the day after her birth was really here.  Could I be as strong as she would need me to be?  Could I really do this?

Could I be as strong as she would need me to be?  Could I really do this?

Surprisingly the wait flew by.  Our hospital was fantastic at letting us know how things were going every hour and a half.  She went back at 8:30 and we expected everything to be done by 2:30 with about an hour wait until we could see her after that.  They were almost exactly on time for all of that.

 

I don’t do well with tubes and wires and babies and thought that would be really hard for me, but the moment I saw her, all I felt was this amazing relief.  I hadn’t realized how much weight I had been carrying for the last 6 months.  It was over.

Our stay in the hospital was practically uneventful.  How truly lucky I feel about that.  Harper was amazing.  She was off the sedation meds the next morning, eating a bottle the next day, out of the CICU in only a day and a half and home on day 5.  We did go home with some oxygen due to pulmonary hypertension.  I was really not thrilled about needing the oxygen and often find myself annoyed over it, until I remind myself that she’s the one wearing it all the time!  We do not have an official timeline for when we can be done with the

We do not have an official timeline for when we can be done with the oxygen, but have been assured it’s the best treatment for pulmonary hypertension.  We will revisit at our 3 month checkup with her cardiologist.

We didn’t go home with any medication and just gave her ibuprofen and Tylenol for pain.  She hardly seemed like she had any pain at all!  Everyone said that babies are resilient and they weren’t kidding.  Harper has been happier, more alert and awake, and dare I say even more calm than she was before!  She truly is just a joy.  There are a few physical limitations for now like not picking her up under her arms for 6 weeks post-surgery.  That’s more of a challenge

She truly is just a joy.  There are a few physical limitations for now like not picking her up under her arms for 6 weeks post-surgery.  That’s more of a challenge

There are a few physical limitations for now like not picking her up under her arms for 6 weeks post-surgery.  That’s more of a challenge than you think, and a word to the wise – don’t put your baby in a Bumbo chair because getting them out without lifting under their arms is quite the challenge!

This experience has taught me that we are all stronger than we think we are.

All of us.

Mom’s worry about their babies in so many ways and no one person really worries more than another.  Harper has brought me such a wonderful, life-changing outlook on motherhood.  Although our challenges with each child might be different, no one person hurts more for their child than another when faced with worry over their struggles.

Could I be as strong as she would need me to be?  Could I really do this?

I am and I can.

But most importantly – Harper brings me that strength every day when I look into her beautiful eyes.  She has eyes that stare directly into your soul.  Eyes that give you the strength and effort it will take to face whatever challenges you might face.  Eyes that show you all the hope and brightness in the world.

And most of all, a heart no longer broken, but full of joy.

 

 

Janelle can be found on instagram @jksmith03   and facebook as Janelle Cobbley Smith.  She doesn’t currently blog, though secretly wethink she should! She is forever encouraged by meeting new homies with extra chromies so reach out and say hello or leave a comment on this post to let her know if her story was a help to you too.