A special day

There is no Hallmark card or balloon bouquet to mark this very important day. I don’t think it’s an occasion to celebrate with cake either. But it is a big day in our little baby girl’s life. Today is six months since her heart transplant. On the flip side, that means it has been six months since another family lost their little one and had the incredible strength to say yes to organ donation.

On May 8, Mother’s Day, in the middle of the night, Addison got her new heart. I will never forget those long minutes when they wheeled our daughter away for her surgery. It took an army of nurses and doctors to get her down the long hallway with all her medical equipment in tow. They stopped just before she was out the ICU doors to let Aaron and I say goodbye. That was so brutally difficult. She was lying there on the hospital bed, so tiny, surrounded by so many machines and people. “Please take good care of our little girl,” was all we could say.

Addison was in surgery for nine nail-biting stomach-churning hours…a lot longer than it should have taken. When Dr. Gandhi came to see us, we didn’t need him to tell us the news wasn’t great. Though the surgery went absolutely textbook perfect, Addison’s new heart just would not beat. She had to go back on the heart-lung bypass machine to keep her alive. It was the best day and the worst day all at once.

Well you know how the story unfolds from there. Her new heart did start to pump and less than a day after surgery, Addison had a pulse! It kept getting stronger and stronger. She was taken off life support a few days after surgery. Three weeks later, we got to take her home.

Six months post-transplant is a major milestone, at least in my opinion. So many of the statistics I pored over while we had all that time at Addison’s bedside listed “six months post-transplant” as one of the markers for survival rates. It just stuck in my head that getting through the first six months was crucial. Addison has made it!

The journey has been terrifying and amazing all at the same time. While Addison’s road to recovery has been remarkably smooth (once we got past the first really bad stretch), a reminder this week that life does not move in a straight line. Her latest bloodwork shows a few disappointing numbers – her hemoglobin and white blood cell counts are down, her urea is much higher than normal. It could mean Addison is fighting some kind of infection, or perhaps her little body is protesting the huge amount of Tacrolimus in her system. Medicine is definitely not an exact science, especially when it comes to the first infant to get a heart transplant at BC Children’s Hospital.

I just have to go back to the mantras that got us through those frightening days in May…one day at a time. Every new day is a good day. Tomorrow is six months + one!

Love,

Elaine, Aaron and Addison

PS – Here is something else remarkable today…this post marks our 100th blog post! Thanks to all of you for reading.

8 thoughts on “A special day

  1. Congratulations Aaron, Elaine and Addison!!! A huge milestone indeed! We celebrate with you as you mark this special day. Ten years later, we never forget how precious every day is….you are all on the right track!!
    God Bless, Carmen, Mike and Brynn

  2. Hi I am so happy that Addison has been doing so well. Will continue to pray for her as she continues to grow. Plz keep me posted on her progress. Such a prescious little one. God is so good!!

  3. Happy 6 months New Heart!!! It is a miracle and one I think of often 🙂
    I hope that Addison’s levels even out and her immune system recovers quickly. Such a tenuous rope, isn’t it?
    Love, light and prayers to you all and to the family who made such a crucial life saving decision in their darkest hour.
    Lisa

  4. Thanks for sharing this Elaine, it was a good reality check for me, feeling sorry for myself after a sleepless night with my teething little girl. Many many more milestones to come and be smashed Addison! See you soon.

  5. Addie is such a strong fighter! It’s amazing to think about and to see how much she has grown and developed over the last 6 months!!! Happy 6 month post-transplant, Addie!!!! And congrats on your 100th blog post, e! You are doing an incredible job keeping us all updated and inspired!

  6. Happy 6th months. She shares her special day with our Marcus that turned 3 years old on May 8th. Mattias celebrated his 6th birthday on Friday November 4th. To me this too was a huge milestone. The chances of passing away the first 5 years with his condition is much higher than after that. Now his life expectancy is 25 years maybe, or even longer if he ends up having a heart transplant down the road. This is the first year I found myself starting to think further down the road and more about his further. It is such a blessing to let myself do that.

    Addison looked adorable in her costume by the way. I think of her all the time. What a trooper. My friend Nancy is in Edmonton, awaiting a heart for her daughter born in June. The wait can’t even be described with words. It makes me happy to read about Addison and see that she is doing so well. There is always hope right :o)

    Love, Hege

    Love, Hege

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