6 THINGS I WISH I KNEW BEFORE OPEN HEART SURGERY

This day three years ago we woke up like any other day at 5am (my kids never did get that memo about 7am wake-up protocol), but this day wasn’t like any other early morning…

Three days prior we’d been told that without heart surgery Eden wouldn’t see out the week, her cardiac failure that she’d been in since birth had rapidly advanced, she was 10 weeks old.

We presented at the hospital at 6am, I had my tissues with me as surely I’d need them. Eden passed all her checks and I filled out all the paper work, you know the waiver of responsibility if she was to die on the operating table, because given her age there was a 10% chance…

We waited in the wings cuddling our girl until the nurse came to collect her. As yet there had been no tears; maybe handover would be my undoing? It wasn’t long and we heard her name called, last kisses and I handed her over, we watched as she was carried beyond the theatre doors. Still no tears, but instead a sense of relief, relief that no longer was her condition my responsibly!

Eden had two large holes in her heart; she required an ASD/VSD repair, which meant Open Heart Surgery was her only chance at life. She also had a faulty valve and in the Cardiologists words “the valves not really gonna cause issues, but if we’re going in we may as well clean up everything”.

Her surgery was meant to take anywhere from 3-5 hours, so instead of sitting around watching a clock we left the hospital and went out to a fancy café for breakfast (I know I was as surprised as you, it gets worse) and after breakfast we shopped, we laughed, we joked, it was like we were on holidays. It was during the shop I turned to my husband and said “is this wrong, it doesn’t feel wrong, but shouldn’t we be worrying or praying or something?” Suddenly it dawned on me, a scripture I’d read for years, that I thought I understood, but not until this day did I truly understand its full capacity.

Philippians 4:7 And the peace of God, which surpasses all understanding, will guard your hearts and your minds in Christ Jesus.

I knew at this point why I hadn’t cried and I knew at this point it would all be ok. Five-ish hours after we left Eden we received a call from her surgeon letting us know how well her OHS had gone. We made our way back to hospital.

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This is how we found her and it was more than a little confronting, millions of wires (no exaggeration) and lines keeping her tiny body alive. Sure she was in ICU but she had made it and I couldn’t get that grin off my face.  Over the next 2 days she would kick some major goals in record time, I was already counting the moments to bust her out of there.

The next three weeks would prove to be some of the most challenging weeks of my life and here are a few things I wish I’d known prior.

6 THINGS I WISH I KNEW BEFORE SURGERY

  1. Don’t just prepare for surgery, prepare for recovery! We were prepped for a 5-10 day stay, not everything went to plan and my zealous ‘home by the weekend’ attitude was shattered with a three week stay. From the practical side of things to the emotional, I needed more clothes more reading, more visitors, more prayers, I say over prepare!
  2. Not everything will go to plan, but the end result can still be the same! After the initial ICU stay Eden’s recovery slowed, a residual leak was discovered, a cardiac catheter and blood transfusion were also required. She still recovered, but it took longer and involved a lot more drama and sucked the life out of me. Expect the best, but know the realities.
  3. It may not solve all your problems, but hey it will save your child’s life! Eden had been tube fed since birth, she just didn’t have the energy or capacity to suck, swallow, breath rhythmically and in order because of her heart condition. I had a lot riding on this surgery, I needed her to feed, but it wasn’t so. In actual fact her feeding worsened after surgery, (which apparently is common) Eden didn’t feed without a NG tube until she was 10 months old. This was a huge blow to me.
  4. Get out of hospital! Seriously 3 weeks in that place feels like 6 months, every chance you get to leave do. Lunch/Dinner with a friend (nurses are there, our hospital even had volunteers that would sit with your child while you were out, shower, grab a coffee or make a call), coffee at 6 am (ok coffee at any time and most importantly before Drs rounds) and a night or two at home while hubby does ward watch is a definite must! After Eden was stable and on the mend (be it ever so slow), our hospital let us take her out for a coffee, walk and a soak in the winter sun YAY!
  5. You are the expert, don’t underestimate your knowledge! You are the one sitting bedside for 90% of that day, you see nurses change and Dr’s come and go, you hear everything. Your expertise is so valid and you must speak up to nurses and Dr’s with your knowledge. From shift changeover to Dr’s rounds be present, stand up and be part of what’s happening. I made sure I was present for every Dr’s round morning and afternoon; I was always showered, caffeinated, bed put away, alert and ready to know what the days plan was. Dr’s will turn up with their entourage of thousands and they will discuss your child with strangers before you; that is of course unless you’re standing bedside making eye contact with their every word. Don’t hang back, be part of the process!
  6. Be prepared to step in, you are your child’s advocate and no one has their interests at heart better than you! I had to step in more than once, from a dodgy nurse trying to put cold milk down Eden’s feeding tube (I took over and told her to go ruin someone else’s night, and then I chose not to sleep that shift) to a dodge registrar trying to take blood from Eden and botching veins 1,2,3…oh and swearing with every one (that’s professional). I found out my rights, hospital protocol and told her she would not be touching my child again, the ward then had to find another Dr to prep Eden’s transfusion for that night. This caused major upheaval for the ward and a more senior cardiologist was called in to prep Eden (not my problem, Eden was my priority) I was visited that night by every nurse on duty commending me for my courage and standing my ground. Here’s a tip, nurses will tell you what your rights are and they want to see what’s best happen, you just have to ask.


YAY for three years on, our girl is fighting fit and tackling life head on. Yay for hospital stays coming to an end, this hospital stay feels like an eternity ago now, but pieces of it are etched in my memory forever. YAY for surgeons, cardiologists, theatre staff, ICU and ward staff for they truly are everyday heroes. YAY for occupations that save lives! YAY for not needing tissues! YAY for a God who makes everything ok, in an otherwise chaotic situation. YAY for little girls who fight for their lives and who in return breathe life into others!

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2 thoughts on “6 THINGS I WISH I KNEW BEFORE OPEN HEART SURGERY

  1. I like the idea of going out for breakfast and shopping. Sure beats what we did — sit in hard plastic aqua chairs watching Chinese TV with everyone else in the waiting room. Yes, these are little girls that fight for their lives and pull life into everything.

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  2. Love this thank you! I didn’t get to read it before my 6 month old daughter had open heart surgery 3 weeks ago, but I totally agree on all fronts. During her op I went and got my hair cut and nails done, things I hadn’t been able to do in months. I felt guilty at first, but time passed quicker that way I’m sure. And learning the hospital language is so important too – being able to engage with the doctors and nurses helped me feel more involved in Hannah’s recovery. Thank you for being so real!

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