Sunday, November 25th

While I had been packing for nearly a week, we still had a lot to do this morning. Our goal was to leave by 12:00, and I think we left about 2:00. Sounds about right for our family! Saying goodbye to the boys and seeing their hugs to their sister nearly broke me. I couldn’t talk to Adam in the car for a few minutes. Seeing the garage door shut felt so final, so daunting. Our happy, smiley girl sat behind us, jabbering away. The fact that she had no idea about what was about to come made it both a little easier and a little sad. Dealing with a nonverbal child is pretty tough in general, but I couldn’t imagine leaving her outside of that operating room and it ending in nothing but me being an absolute disaster (spoiler alert: I was right).

Jack also has a heart defect. He received this bear in the NICU–A Zipper heart is inside. Our sweet boy gave this bear the night before we left. After asking if he was sure, he told us, “Yes, of course. She needs it more than me.” 

We arrived to our friend’s home in Eagan that evening and Claire and their two boys became instant besties. It was so comforting staying with good friends and letting Claire play in their home instead of a hotel room. Adam and I commented often that night how thankful we were to be drinking and laughing with them instead of looking at one another and letting our stress eat us alive.

Monday, November 26th

We started our pre-op day with a visit to the ENT to discuss a future tonsillectomy and adenoidectomy (T&A). A previous sleep study revealed her sleep apnea has also worsened and gone from mild to moderate. She oftentimes dipped into the low 80’s for oxygen saturation – this was super concerning (Normal oxygen saturation is usually between 96-98%).  It is very common for individuals with Down syndrome to need a T&A due to sleep apnea. The ENT doctor isn’t certain if a T&A will help her as her tonsils and adenoids are very normal in size. We would have the procedure done at the U of MN should we end up needing it done.

This appointment was followed by pre-op labs, an echocardiogram, consult with the surgeon, pre-op physical with the NP, and a chest x-ray. Claire is typically pretty reserved for nurses/doctors (for good reason) but when the surgeon walked in and said “Hi Claire!” she walked over to the doctor, said “Hi,” and gave him a hug. My mind and heart were instantly at ease. She trusted him, so I did too.  The entire day we had an unbelievable Child Family Life specialist named Julia. I cannot tell you how invaluable Julia was during these appointments. Julia works solely with the cardiac patients and had so many tricks up her sleeve. She was the go-between for everyone and it was obvious the doctors and nurses appreciated her as much as we did.

The only time I cried that day was at the end of all our appointments when we were wrapping things up with Julia. She had asked if we wanted to see pictures of the lines, tubes, etc and I told her no. At that point she said, “Have you ever been given a memory bag?” I told her we had not, and she went to go grab one. By that point Claire was losing her mind and being the threenager she is, so I gave her my phone to watch Netflix. Julia came back in our room and gave us a bag filled with some fun gear for the boys and a few books – the title of one got to me and I started to tear up. At that moment, Claire had also opened Amazon music and started to play Keala Settle’s “This is Me” from The Greatest Showman. I had not listened to that song for at least a month, so I don’t know how she found it. Sometimes things are just freaky, and weird, and lyrics from a movie musical make you lose your mind in front of your husband, daughter, and a Child Life Specialist.

When the sharpest words wanna cut me down

I’m gonna send a flood, gonna drown them out

I am brave, I am bruised

I am who I’m meant to be, this is me

Look out ’cause here I come

And I’m marching on to the beat I drum

I’m not scared to be seen

I make no apologies, this is me

Tuesday, November 27th

The day before surgery…. we had this day open as it was scheduled as a “just in case she needs a sedated echo” day. Claire did so well at her pre-op echo that we had nothing to do but enjoy our day with just the 3 of us.

Our first stop was the Mall of America and Build-A-Bear. That damn store is a parent’s nightmare. Everything at kid-level and one thing more shiny and obnoxious than the next. But! This day was about Claire, so I kept my irritation in check and followed her around while she touched every stuffed puppy in the store. Eventually she settled on an adorable Collie and strutted her butt right over to the fill station. We also spent $7 on a heart to go inside the dog that we will never see again, but THE NEXT DAY WAS HER HEART SURGERY. What’s a parent to do? 😉 She kissed that heart and I (not shockingly) got weepy all over again.

After a nap and packing up all of our things, we headed to see another set of friends in Chanhassen who have two sweet little girls. One of their daughters is close in age to Claire and it was so fun to see them playing together. Being back in Fargo and close to MSP definitely has its perks.

With tomorrow looming over our heads, we hugged goodbye to our friends after a delicious dinner and headed back to Eagan. By this point we were emotionally and physically drained, so we said goodnight and goodbye to our fabulous hosts. We would be staying at the U of MN and another friends’ home in St. Paul for the rest of our time in the cities.

Adam and I hugged our sweet girl goodnight. We exited the room quietly and turned to each other and said, “We can do this.”  The day had been a turning point for us – instead of looking at this as a horrible, depressing event, we were there to fix our daughter’s heart. And she was going to rock this surgery.