Gratitude

I realize it has been a couple months since I last posted. We have been busy going on two vacations (hooray!), recovering from vacations and getting sick. I can be guilty of making “Perfect the enemy of good”, maybe not perfect, but at least “great” and that makes me slow to post because I want a well thought out post and to share some great pictures of Hana on vacation because I know how much people want to see them (and they are pretty awesome, if I say so myself).

In this post I am not going to tell you about our vacation or how we all got RSV and Hana spent two nights in the hospital. I will share that in the next few days (I promise). In this post I want to share the letter I wrote for the Gallery of Gratitude for the new children’s hospital that is almost completed at Stanford. They requested anyone who wished, to submit letters, notes, pictures or art work expressing their gratitude. Gratitude for the hospital and its staff is something I feel every single day but I hadn’t given it the time to really express it other than out loud at home. It was really rewarding putting it down in words, especially with the thought that someone who I am expressing gratitude for might actually read it. I came to learn later that the letter was passed around, to whom I don’t know, but when we ran into Hana’s primary transplant cardiologist he thanked me for writing it. Of course, I didn’t know what he was talking about at first because I think my brain is just a little too busy and a lot too tired.

So, now I will share with all of you the letter, just in case you might want to read it too:

Every day I say, out loud, “Thank you for another day with Hana.” Often, its just a whisper at bedtime, as Hana is wrapping her 3-year old arms around me and saying, “I love you mama.” Every single day I am so grateful that Hana got to see this day, another day, another chance. At six-months old we thought we might lose her when we got the shock of our lives with her sudden diagnosis of dilated cardiomyopathy and severe heart failure. But she was treated at your hospital for three weeks and we miraculously got to go home with talk about an eventual heart transplant. I remember bending over her in the CVICU sending out whispered “thank yous” to everyone I could think of, the life flight team, the doctors, the nurses, the nurse practitioners, the social worker and child life specialist, the pharmacists, case managers, the woman who spontaneously grabbed me a stack of napkins in the cafeteria when I started crying uncontrollably from all the stress and shock and emotion.

At 15-months, Hana’s left lung collapsed and we were back in the hospital, this time for an unknown amount of time, while Hana was placed on the Berlin Heart to help her heart pump blood until a donor heart became available. It ended up being seven months while your hospital became our home where we slept, ate, and raised our only child.

After Hana got her donor heart and was recovering, she was in a funk. She really didn’t want to sit up or walk around or play, she just seemed in a very down mood.  We were warned that this often happens to patients after their heart transplant. Her nurse, Jay, thought it would be good to take her on a wagon ride to see the fountain outside of the Stanford adult hospital next door. Hana had never seen it before, despite being in the hospital for so long, as she was never able to travel that far while attached to the Berlin Heart.

When Hana got outside and she saw that fountain she started climbing out of the wagon! Then, she started walking for the first time in almost two weeks! Then, it dawned on her that she was walking, for the very first time, unattached to the six foot drive line that had connected her to the 200-pound Berlin Heart. That’s when she started a very wobbly RUN around the perimeter of the fountain. Finally, she was free. Finally, she had gotten her second chance at life.

Although she still didn’t appear joyful or happy, somehow the gravity of this moment was beyond that. It was the earnestness in her steps, the resolve in her chosen path, and the determination on her face that were so compelling. The rawness of her condition – so soon after open heart surgery, and the innocence of her age – just under two-years old, uplifted all of us who witnessed this and brought tears to our eyes (including Jay).

Thank you, all of you, all of the hundreds of people that make this moment possible and all the other moments that follow it. I know its more than just the hours of face-time with medical staff, its the hours of work from people behind the scenes and the hours of research and study and thought and its all brought to us with compassionate hearts and caring minds. Thank you for another day with Hana.

The letter from the Gallery of Gratitude
Hana-fountain
Hana at the fountain after her transplant.

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Why We Scamper

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):

Extubated

Hana’s breathing tube came out! It went very smoothly! Hopefully they can continue to wean her ventilation so she can start getting tube feeds. Her echocardiogram looked about the same as yesterday. They may even take a few chest tubes out today. 

Just a tidbit of information – her donor heart matched her A+ blood type.


She’s not actually this awake quite yet. I did get to listen to her new heart with a stethoscope, it was AMAZING. Let’s hope the rest of the day goes smoothly!

194 days in the hospital, 2 full days with her new heart!

She’s Done!

Hana’s heart transplant is done! It went very smoothly with no surprises. The surgeon told us the new heart is working very well. Hana just came up from the OR and is getting settled in the CVICU. We will get to see her in about 30-45 minutes.

We did see her as she was wheeled out of the elevator.

I am on the brink of very overwhelming emotions.

After we see her we are going to try to SLEEP. Hana will be very sedated for awhile. Tonight they will just let her be. She has a breathing tube and will have it for about 24 hours. 

We are so incredibly grateful for this gift of life!



192 days in the hospital, day of transplant!