January 6th, 2016. Day 51 waiting for a heart.
That morning, we arrived on the unit shortly before rounds and sat through the day’s plan as we always did. We would be trying Laura on 4 high flow trials of 2 hours each – tomorrow we would switch her to high flow permanently and then on Monday, we would likely be heading upstairs! It was crazy to think that after this long, we would be leaving the PCICU but we knew that Laura would have more opportunities upstairs. The staff up on the floors were well trained with Berlin Hearts and she would get the physical and occupational therapy that she so desperately needed – she was nearly 4 months old and still couldn’t hold her head completely or move it easily in all directions without support. She didn’t really bat at toys and the only thing she could do developmentally was turn pages in a book (she was actually very young for this skill -she loved books).
We went about our business as usual and then at 13:30, our transplant coordinator arrived. She visited us every day that she was in the hospital and she was amazing to talk to. She had recently returned to work from maternity leave so we talked often about her son and how he was doing. She attended a large church and had great Christian book ideas for Laura that her son loved – No No Noah is one of the best ones – we bought it for Laura and it’s one of her favourites!
I had just picked Laura up after getting her dressed in the cutest little blouse that I had bought for her the day before when I noticed that there were quite a few members of the transplant team hanging around. Simon was there (the transplant doctor – I’ve mentioned him a few times) and he said 4 little words that I could barely even comprehend at the time…
We have a heart!
What do you mean? How? We’ve been waiting less than 2 months! Honestly I hadn’t fully been able to process the words. We had been waiting for this but how was I supposed to believe it?
He went on to tell us that it was a perfect match in every way – it was the same blood type so we wouldn’t be taking an ABO incompatable heart (if you’re interested: http://www.nejm.org/doi/full/10.1056/NEJM200103153441102#t=article – Dr West from Edmonton’s the Stollery was the pioneer of this approach). The donor was EBV negative and carried very few antibodies – the child was slightly larger but well within the range and they believed this to be the perfect heart for Laura! My knees felt weak as I looked down at Laura in my hands. Today, she would receive the gift of life. I was filled with joy, hope, panic, and sadness. Someone would be saying goodbye to their child today – we remembered all too well how it felt when we thought we’d be saying goodbye but fortunately, we didn’t follow that path.
We were told that the heart would be arriving sometime that night/early morning and that our regular surgeon would be performing the operation. We had optometrist appointments that afternoon so suffice it to say, we cancelled those pretty quickly!
We spent all day with Laura trying to give her as normal of a day as possible – this was no excuse to slack on her physio or to not play with her and read her books – it was important to keep her mind sharp! It was hard to imagine what it would be like to see her without her Berlin Heart.
Vijay was the intensivist on for the week. Imagine a very well dressed man with a perfectly coiffed(weird word) beard and very nice hair – that’s Vijay. He normally wore an expensive looking suit with great shoes. He was young and relatively new to the unit but he was great. He always brought a great sense of humour and loved to play with the kids. When Laura would wear her cpap scuba mask (the full face one) he would come by and tap on it like a fish bowl and she thought it was hilarious. He was so excited for us when we received the news and was with us every step of the way in preparing for surgery.
At around 22:00 we gave Laura an antiseptic chlorhexidine bath to get her ready for the OR. They would, of course, wash her again when she arrived but this would help to prepare her for them. We got Laura ready for bed and she went to sleep.
It was odd watching her sleep and realizing that she had no clue what was going on. We read, watched videos, and talked to the nurses and doctors who showed up to offer their congratulations. We found out that Dominic would be doing Laura’s anesthesia and we were overjoyed! There was no one better to take her into this (hopefully) final surgery than the man who had been with her through it all.
He came to get her at around 01:50 to get her lines in and get her ready for surgery. The heart was expected to arrive at around 05:00 so once we said our goodbyes, we headed to the parent rooms to get some sleep. We set our alarms for 05:30 so that we could be up and ready once the heart had arrived. I had called my parents and they would be arriving that afternoon to be with us after surgery – even if just to sit with Laura so that we could rest.
At 07:20 the surgeon came out in search of a coffee and saw us sitting in the waiting room. He told us that the new heart was in and that she was on bipass right now while the heart loosened up a bit and got used to it’s new home. Everything was looking good right now – there were large amounts of scar tissue to get around and her pulmonary artery had to be stretched a bit thin because of her original condition but it looked pretty good.
Shortly after we saw him, Vijay came out to talk to us, say goodbye (he was heading home while John took over for the day shift) and show us the amazing pictures he took during surgery. We had asked him to take a picture of Laura’s old heart so that we could see what damage had been done. Until we saw the two pictures, one of her old heart and one of the new, we hadn’t quite understood the extent of the damage to her heart.
First, her old heart, battered and worn – you can see the holes from the Berlin Heart and ECMO cannulas and the scarring from all her surgeries. You can also see the opacity of her left ventricle and how it looks more like a piece of meat than a healthy, working organ. When I look at this, I am amazed that it kept her going for as long as it did:
Now some may say that this is pretty much what they expected a heart to look like…until I show them the second picture. Here is Laura’s new heart, pink and healthy – ready to live a second life in our baby girl:
Just look at those beautiful coronary arteries! No holes, no scars. This heart brought with it the hope for a new life – a life outside the hospital, away from wires and tubes and a life where she could, as Lindsay had told us so long ago, take swimming lessons and ride a bike.
We knew, of course, that Laura was not out of the woods. The more trauma a body has faced before transplant, the rockier the course can be afterwards and Laura’s surgical course had been quite impressive so far.
We looked forward to seeing our baby girl again – with a new heart!
Tally: Age: 3.75 months, Open Heart Surgeries: 6, Other surgeries: 2, other surgical procedures: 17, cardiac arrests: 3, minutes of CPR: 127, ECMO runs: 2, LVADs: 2, Hearts: 2, days in the PCICU: 104