Life with Addison (or BADdison, depending on the day)

It has been almost exactly four months since Addison got her new heart – Thursday is officially the anniversary date. Maybe it’s the interview we did for Global BC, maybe it’s post-traumatic stress just hitting me now, but I have had quite a few moments over the past couple of weeks when I look at my beautiful little baby girl and I am so thankful she is still here with us. I can’t imagine life without her.

In the morning after she wakes up, there is nothing like walking into her room, bending over her crib to pick her up and then seeing her beaming smile. Of course, that is usually followed shortly thereafter with cries of hunger, but it is a magical moment we get to experience every single day.  Don’t get me wrong, Addison – or Baddison as Auntie Jen has nicknamed her when she is naughty – does have all those regular newborn baby grumpies. She doesn’t always listen to us (I’m hoping that’s only because she doesn’t understand us yet), she doesn’t always like to nap, she doesn’t always play quietly by herself while Mommy and Daddy hurriedly cram dinner into our mouths, sometimes she cries and I don’t know why.

People often ask me “How’s it going?”, or “How are you doing?” in such a tone that I can tell what they really mean is “How is it dealing with a newborn baby who has had a heart transplant?”  Well, I’m doing great…most days!

Addison really loves her Gong-gong's singing

The biggest difficulty for me right now is the loneliness. With Addison’s immune system at such low levels, play groups and drop-in time at the community centres are out of the question. I spend many days alone with her when Aaron is at work. Every afternoon, we try to head out for a walk.  Lao-lao and Gong-gong (retired grandparents rock!) have helped out so much and usually join us once a week. The bumper crop of babies at Global this year has also provided some mommy companions. My older sister and best friend work part-time so we look forward to their visits too.

Some of the Global girls at Jane's baby shower

Addison is so much bigger than Will (Chris and Jane's baby boy)

But there is another silver lining…Aaron and I have met so many wonderful transplant families who have walked the same path. It has been so great to get advice and encouragement from them, plus no one is upset if there are last minute cancellations due to the possibility of a runny nose or scratchy throat. Gotta avoid germs at all cost! (Click HERE for more on how we met Grace and Dennis, pictured below.)

Addison with Dennis and Grace - Dennis donated his kidney to his daughter Grace

I really don’t know what life would be like with a normal healthy baby because I only have Addison. To me, meds several times a day and paranoia about poopy diapers is completely routine. Now I actually spend most of my mommy moments trying to concoct new ways to get her to nap longer or trying to calculate when/if she has some kind of nap schedule. Sounds just as normal as any other time-starved sleep-deprived Mom, right? I wouldn’t change it for the world.

Love,

Elaine, Aaron and Addison

10 thoughts on “Life with Addison (or BADdison, depending on the day)

  1. Yes is the answer to all your mummy queries. I am up to number 3 and still base my thinking around naps, bedtime and how much they are all eating and sleeping and pooing!!! I must email you again soon with an Aussie update
    Debbie xx

  2. Elaine, you are such an incredible mom! You are doing an amazing job with Addie!!!! Both of you are superstar parents!!!!! Love all these photos!!!! The one of grace holding Addie is super cute!

  3. My heart goes out to you, recently a new gramma in February and now in August. Blessings to you all and joy for good health in the future for Addison.

  4. I just watched your story on Global News this evening and tears just poured down my face…again too when I told my husband the story. I am so happy for Addison and for your family that she received a heart and that she is doing well!
    I am expecting my first baby next April and this story just touched my heart.
    From one heart patient (myself, and nothing as serious as Addison) to another… I wish you nothing but happiness and all things good 🙂

    Thank you for sharing Addison’s story…

  5. Seeing your story on Global News really touched my heart. I have a 6 year old son who has had 3 open heart surgeries & Dr Gahndi is our Pediatric Cardiologist at BCCH as well. Last summer after a failed open heart surgery, new hope was given to us & this past June, my son had a shunt put in his heart & he is a new boy. This is still a temporary thing as we know he will require another surgery for a valve repair & possibly a heart transplant in his lifetime, if it comes to that. I can relate to your emothions, fears, elation & all of the above because I have been there. Just enjoy every moment with Addison, she is a little miracle! Congrats.

  6. Elaine: I have been following your blog since its inception and check it regularly. You have been blessed with a miracle child and she in turn has been blessed with miracle parents. You and Aaron are a great team. I am sure Addison will bring you years of joy!
    Julie

  7. It was heart breaking to see your story last night on global as it really hit home for us. It has been 10 years since my son’s liver transplant and we saw your story together and when you talked about being told that your precious daughter might not make it, my son turned to me and said “Mom were you ever told that?” I didn’t have to say a word as he saw the tears in my eyes. I feel sooo much for you and I have been there. All I can say is just keep going, take one day at a time and we have been blessed with very special children. My son is now 11. He is a AAA hockey player and was the captain of his team last fall and a very active “normal” young boy who I am so proud of. I should mention too that he is an honor roll student! He was a little longer at meeting his “milestones” but one would never know today what he has been through (unless of course you saw his belly!!!).
    Keep strong and life will get easier!!

    My heart goes out to you all! and give that precious daughter of yours a hug from us!

    Nicole

  8. Our son Kai was born at Woman’s on January 8th, 2011 and passed away January 22nd. He would of been 8 months today and today is the day someone told me about your story. Kai was born with a heart defect and after some complications during surgery, he was the first baby put on ECMO at BC Chikdrens and we too were put on the transplant list. As you know the most trying and painful time in you lives watching your child hooked up to do many machines, clinging to life. We prayed and hoped but our miracle heart did not arrive in time. Kai lived for two weeks but will forever be in our hearts. Your little girl is truly a miracle as are all children. You will be in my thoughts as you have been all day.
    Kai’s Mom,
    Steffanie

  9. I was just on the tiny light website and saw grace on there as one of the stories! She is so cute and her story breaks my heart just like addison’s did, but now they are both living there life to the fullest! She and addie looked so cute together in the picture!

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