What it Feels Like the Night Before Your Child Has Heart Surgery

What it Feels Like the Night Before Your Child Has Heart Surgery

Every time I hear about another family preparing for their child's heart surgery, it takes me right back to that emotional whirlpool we were in. It's a vivid reminder of the fears, hopes, and prayers that consumed us. I recently revisited a post I had originally shared on our Caring Bridge page, which is now part of my book, "Always a Blessing. Never a Burden." It's a raw look back at what we were going through, and I wanted to share it again, but in a more condensed form.

As I read through these words, it's almost like stepping into a time machine. So, let's travel back to that moment in time when this post was written.

The Day Before M's Fontan Procedure
M's Fontan procedure is finally set for tomorrow morning after being rescheduled three times. I'm a bundle of emotions—fear being the most dominant. My mind is a cocktail of faith, science, hope, and anxiety. It's a tough drink to swallow, but we're not the first to walk this path, and we won't be the last.

Writing is my way to unload the emotional weight. It's how I make sense of the chaos in my head.

My Worries

  1. I don't want my child to die - open heart surgery is scary shit and I cannot bear the thought of losing him. Every time I have even the slightest thought creep in, I try quickly to erase it and say to God, "no, no, no - take this thought away please; M is going to kick ass and rock this thing".
  2. I don't want him to be scared
  3. I don't want him to be in pain
  4. The aftermath of what this surgery means - this surgery will not fix M; it will improve his quality of life, but this is just a temporary fix. The goal of this surgery is to get him to the next advancement in modern medicine. That is scary and I know that advancements are coming, when he will need the next intervention, we don't know.
  5. That his body will have a hard time adjusting to this new flow, that he will develop one of the many possible side effects that can come with this surgery, protein-losing enteropathy, pleural effusions, liver failure, kidney failure, heart failure
  6. That his personality will be changed somehow; either that he will be scared to go to the doctor after this or that he could suffer brain damage or memory loss from being on the heart and lung machine during surgery
  7. That he will have scar tissue attached to his heart
  8. That he will have a bad experience with the PAT testing tomorrow, difficult blood draws, long echocardiogram
  9. Collapsed lung after surgery
  10. The medications that he may have to be on after surgery
  11. Him waking up and being scared
  12. Not being able to extubate immediately
  13. The swelling
  14. Getting him to eat again
  15. Constipation following surgery
  16. Being bored and not understanding why we cannot go home
  17. Missing our animals
  18. Missing home
  19. Having to put on a clinical hat and play nurse, doctor, Mom and wife all at the same time

What I'm Looking Forward To

  1. Seeing him after surgery and knowing he is OK
  2. Holding him again, hugging him again
  3. Seeing his eyes open
  4. Hearing his little voice and knowing he is my M
  5. Telling him that he makes my heart smile
  6. Playing music for him in recovery - his favorite songs, including, "Shut up and dance with me"
  7. Seeing him run or walk up the steps and not get winded
  8. Hearing him say, "home sweet home" when we pull into our garage
  9. Seeing him play with the neighbor kids again, Zak, Gavin, and "Nova" (Noah), specifically
  10. First day of school
  11. Avengers live in October
  12. Hearing him say, "Mommy play with me"
  13. Watching him give Toby and the kitties a hug
  14. Having him back at home in our bed to sleep and snuggle in between us, with elbows, knees and toes in our backs and mouths
  15. Hearing his scampering feet across the floor
  16. Trips to Target
  17. Giving him his Batman cave when we go to the step down unit
  18. Spending quality time with him and Joe while in the hospital
  19. Feeling of being uplifted from thoughts and prayers coming from all over the place
  20. Being able to attend weddings and events in September because he has rocked this and we are home, safe and healthy
  21. Joe 's birthday, Halloween, Thanksgiving, and Christmas
  22. Seeing the posts on the M4M Virtual Run page
  23. Having M kick off the next M4M Run, live event in 2016!

The lyrics of "I Don't Want to Miss a Thing" by Aerosmith keep playing in my mind. It captures the essence of wanting to hold onto every precious moment with M.

I could stay awake just to hear you breathing Watch you smile while you are sleeping While you're far away and dreaming
I could spend my life in this sweet surrender I could stay lost in this moment forever
Every moment spent with you is a moment I treasure
Don't want to close my eyes I don't want to fall asleep 'Cause I'd miss you baby
And I don't want to miss a thing 'Cause even when I dream of you The sweetest dream will never do I'd still miss you baby
And I don't want to miss a thing
Lie close to you feeling your heart beating And I'm wondering what you're dreaming Wondering if it's me you're seeing
Then I kiss your eyes
And thank God we're together
I just wanna stay with you in this moment forever Forever and ever
Don't want to close my eyes I don't want to fall asleep 'Cause I'd miss you baby
And I don't want to miss a thing 'Cause even when I dream of you The sweetest dream will never do I'd still miss you baby
And I don't want to miss a thing
I don't want to miss one smile I don't want to miss one kiss

Going through this journey has been humbling, to say the least. Thank you to everyone who has stood by us. Your love and support mean the world to us.  

It's hard for me to imagine that this was eight years ago.  I'm so grateful for a relatively normal life now.  We have had our challenges and have a lingering cardio appointment coming up next week where we will learn of the next plans for his next intervention that is needed.  I am beyond thankful that we have that opportunity.

If you are getting ready to embark on this journey of handing your child over to a surgeon, it is OK to be scared.  It is OK to be hopeful.  It is OK to share.  It is OK to clam up.  Whatever you are doing is the next right thing for you in this moment.  It's not fair.  One breath at a time, one step at a time.  You WILL get through this.