June 2017 – Hana's Heart

Why We Scamper

Posted on June 23, 2017June 23, 2017 by kathleenyago

The Summer Scamper is just a couple days away! This big fundraising event for Lucile Packard Children’s Hospital has the slogan “Why We Scamper” and this week I’ve been taking that to heart and really contemplating, more than usual, what that means to me, especially one year post-transplant.

When you have a baby your life changes, you change, and parents everywhere know this. The person they were before that baby was born is not the same person afterwards, you can never unknow what it is like to be a parent. It was the same when we so suddenly learned about Hana’s heart condition. Bam! All of a sudden, in an instant, our lives changed forever. I have changed from the person I was before, I can never unknow what it is like to have a child with a life-threatening condition. Maybe if you know me fairly well you may not necessarily see these changes, but something fundamental shifts deep inside. I can’t even really explain, with words, what this means. What I can explain is that amazing people were able to save Hana and give her a second chance at life. So, when asked, “Why we scamper?” its because for me, that second chance and the amazing people who gave that to her, touches a place deep down inside where the shift occurred, a “something” I can never unknow.

The Summer Scamper is about kids, of course, but behind all that are the people that save the kids. Some of these people are the amazing doctors, at the top of their game, in an elite class. If they were professional athletes they probably would be famous and get paid lots of money. They have dedicated so much of their lives to saving the lives of kids. It has been a very humbling experience watching (of what I get to see) them work. So, I Scamper for them too – so I can support their dedication to saving the lives of kids.

Lastly, I Scamper for all the kids who are no longer here with us. Well, for the families too, because if there is anything that might create another fundamental shift deep within a person, it might be losing your child. I have seen these parents (and grandparents) and the pain in their eyes shows that it runs to a deep, deep place. So in what small way I can, this is my show of support for them. To honor their pain, I feel like we should not take for granted the life we have. So, I Scamper in gratitude for life.

Please consider supporting our Scampering by donating to Hana’s Heart Scamper team:
https://my.supportlpch.org/fundraise/team?ftid=116471

Here are some images from this past week:

Our amazing Hana’s Heart Scamper team, besides me and Paul, includes: my best-friend Suzanne and her two kids, Delphi and Travers (they are doing the kids Fun Run), our friend Megan who came to the hospital every week to play with Hana, our friend Katie whose daughter, Maya, also has dilated cardiomyopathy and lastly, my friend Brenna who I’ve known since I was a little kid, is participating as a virtual runner!

To sum up Why We Scamper, its for videos like this (Hana leaving the hospital after her transplant. After seven months in that building, she finally got to walk away and leave it behind her):

Possibility and Hope

Posted on June 16, 2017June 16, 2017 by kathleenyago

I’ve got something special to share. This past week we passed the one-year-out-of-the-hospital anniversary. The hospital, including the Heart Center, showed us what was possible by giving Hana her second chance in life and it gave us, all of us including family and friends, hope. When everything seemed too heart-wrenching and terrifying to cope, there was that whisper of possibility and hope that called us to pick ourselves up and keep dealing.

I am forever thankful for all the professionals who made saving Hana’s life their job. From surgeons, transplant cardiologists and cardiac intensivists to bedside nurses, child life specialists and social workers they all play a part in touching the lives of children and their families. I remember once being at Hana’s bedside during an intense moment, unable to do anything but just be there, and I started feeling gratitude for all the people NOT in the room who had a hand in keeping Hana alive – like the person who invented the ventilator and even the person who invented the material to make the tubes that were used in the equipment keeping Hana alive. There are many people behind the faces we see at the hospital who have a part in giving us possibility and hope.

Part of how I show my gratitude is by participating in the hospital’s fundraiser each year in June, the run/walk called the Summer Scamper. Last year was the first year I participated and I got in shape to run while Hana was in the hospital. During her naptime, I would sneak out and run around the Stanford campus. Little did I know, that Hana would be discharged before the actual event! It made the race that much more special, that much more real. I remember crying while running at all the t-shirts and signs that people had made mentioning all that I was so grateful for – possibility and hope, it all felt so fresh. This year’s Scamper will be equally as special as Hana will be the Patient Hero representing the Heart Center (I mentioned this many weeks ago in the post Patient Hero). Since it will be 8 weeks after having a baby, I decided not to do the run when I registered for the race (although I’ve started running and I think I could do the 5K). Instead I will do the walk with Hana (and maybe Corrina if we get our double stroller in time).

The special something I’d like to share is Hana’s Patient Hero video. I wrote the words and provided most of the photographs but I was really surprised by the result. I really loved it and watching it brought tears to my eyes.
https://youtu.be/_fMUkeQfzY8

Please consider showing your support by contributing to our team, Hana’s Heart:
https://my.supportlpch.org/fundraise/team?ftid=116471

Here is a link to the rest of Hana’s Patient Hero page:
Meet Hana, Your Patient Hero

Dear Hana,
We love watching you sing and dance:

and cook in your kitchen:

and laugh at yourself in the mirror:

We hope you always keep your sweet spirit:

and resilience:

You are our greatest inspiration:

You are extraordinary:

You are Why We Scamper
Love, Mommy and Daddy:

Here are a few recent pictures:

Hana’s Heartversary

Posted on June 11, 2017June 11, 2017 by kathleenyago

On Sunday two weeks ago, May 28th, we celebrated Hana’s very first Heartversary – one year with her new heart.
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It turned out to be a wonderful celebration! We invited some of our local friends and supporters for a big picnic in Golden Gate Park. We were even lucky enough that some of Hana’s medical professionals came! This was a party to celebrate life (Hana’s) to give thanks (to you – all of our supporters) and to commemorate the donor. I think its this last point that really has me thinking these days. It has been a year since the donor family lost their small child and made the courageous decision to donate their heart. Not a day passes where I don’t stop and think of them, hope they are able to find some peace and maybe some solace in their decision.
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I wish we could have had a chance to have all our family, friends and family from everywhere come to the party. You are what has carried us through! On that note, you may wonder how we managed to pull off having a huge party with a four-week old baby. Our local village here in San Francisco is that answer! A small group of our friends rallied together and took care of all the party details, I just took care of all the big things before the arrival of Corrina. It was amazing. All Paul and I had to do was just show up on the day of the party! Balloons, tents, chairs, tables, food, drinks, a cake, picnic blankets all just showed up at our reserved party spot and all of these wonderful woman (it was mostly the woman, but I know the husbands helped too) have their own toddlers to run after! This is such a perfect example of how important our village is and what an impact they make on our lives.

For our family, life is moving along, especially with the addition of Corrina to our family. Hana is doing great thanks to the medical professionals who dedicate their lives to these kids. This past week she had her one year clinic visit. Coincidentally she was checked out by the original director of the heart transplant program (now semi-retired). There was a tiny bit of concern over Hana’s persistent cough and runny nose (they are thinking possibly allergies) although it doesn’t seem to bother her at all and her lungs sound perfectly fine. We were able to drop two of Hana’s medications – Valcyte and Amlodipine. As long as Hana’s blood pressure stays within normal range she can stay off of the Amlodipine. Hana’s weight gain has been good (thank goodness for all the great summer produce!) She has her annual biopsy in a week, which will be more invasive than any other biopsy since they will look at both the right left sides of the heart (its normally just the right). It will be an all day affair at the hospital. Let’s hope and pray for zero rejection and ideal heart pressures.

I can’t believe it has been a year already. Thank God. What a miracle.

I’m sorry this update is getting posted so late, it has been really hard to find time to sit down at the computer when you have a newborn (and you don’t fall asleep). Corrina is six weeks old today!

I do have something exciting to share in the next or so. It brought tears to my eyes. I hope you like it too!

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