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
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Hana at the fountain after her transplant.

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Rejection

I wanted this next post to be about how great the Summer Scamper was (It was great) and how much fun we had (a lot) or how amazing our team was and how we can’t wait to do it again next year. But instead it’s about rejection. Yesterday Hana had her 1st annual biopsy. We got the results today and Hana has 3a rejection of her heart. It has been a real blow. The rejection scale is this: 0, 1a, 1b, 2, 3a, 3b, 4. 

Most often 3a rejection means that you are hospitalized while they treat you with steroids, but since Hana is doing great clinically, her echocardiogram looks good, the pressures in her heart are good and her coronary arteries look great they decided it’s better to treat her with oral steroids and keep her out of the hospital. So she starts back on steroids tonight and all the medications that go along with long term steroid use. She will be on steroids for 4-6 months. She will go back to the Heart clinic next week and will have another biopsy in two weeks. They also went up on some of her anti-rejection medications. I hope and pray her next biopsy will show no rejection and we can go on our first family trip in August!

With this news, all kinds of thoughts have bombarded my head. Many are dark and terrrible or very sad. I’m trying to stay positive and remember what’s happening in this moment. At this moment Hana is doing great! Please keep her and us in your thoughts and prayers. We are hanging in there, although I’m especially exhausted today!



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):

Possibility and Hope

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:
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and laugh at yourself in the mirror:
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We hope you always keep your sweet spirit:
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and resilience:
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You are our greatest inspiration:

 

You are extraordinary:

You are Why We Scamper
Love, Mommy and Daddy:
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Here are a few recent pictures:

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Hana’s Heartversary

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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She picked out her outfit for the day.
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Hana is signing, “Good Job”.

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This amazing cake was made by our friend Carole! Amazing!
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Our friends Isai and Alison from Tamalitos Catering did all the food.
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Take a heart. Sign your name. Say a prayer or well wish. Drop it in the frame.
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The cookie decorating bar.

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This is The Amazing Rachel, our kid entertainment. She was truly amazing!

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Grandpop helps Hana fly with her butterfly wings (Thanks to the Amazing Rachel).

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The Amazing Rachel had all the kids captivated.

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Paul says a few words of thanks before we cut the cake.

Our great party planning crew!

Heart On The Edge

First off I’d like to address the title of this post, “Heart on the edge” is referring to my heart, not Hana’s. The last 24 hours have involved a lot of time spent at the hospital at Stanford, both planned but also unplanned.

Over the last week we have been potty training Hana which I will say has been much harder than I thought but also much more possible than I thought. I’m not sure how those two thoughts coexist in my brain, but they do. With one of Hana’s medications causing GI upset and a sudden and real urgent need “to go” I wasn’t sure if we would have success. But I was determined and she needs to learn some time and honestly I really think she is very ready. The only reason I’m saying any of this is because we pretty much haven’t left the house during potty training week.

This is why I was very surprised when Hana threw up late yesterday afternoon. We just haven’t been anywhere to pick up a stomach virus. So I thought it was a fluke. Then two hours later she puked again and I started to fear she really was getting a stomach virus. So I called in and was very surprised that they wanted us to bring her to the Stanford ER (no rush but they definitely wanted her to come in). I really thought they would just check in with us over the night to see how much she continued to vomit and if she could keep her medications down. But no. So we quickly packed a bag of necessities just in case we had to stay a couple days at the hospital.

What complicates all of this is Hana already had a Cath Lab/biopsy scheduled for the next morning. I had already talked to the Nurse Practitioner about our pre-op instructions and they always check in to make sure Hana has no symptoms of being sick.

At the ER they get us back to a private room and the cardiology fellow comes to do an exam and an echocardiogram. I might also mention that since her last vomit Hana sucked down 6 ounces of Gatorade and was clawing at Paul’s sandwich like a starving animal. She also was climbing all over the chairs in the waiting room.

After the echocardiogram, the attending heart transplant cardiologist walks in and does an exam and looks at the echo and talks with us. Hana is looking very well and I almost wished she’d act a little sick so I don’t seem like I was being dramatic with her episodes of vomit. They explain again why they wanted Hana to come in – dehydration can be dangerous for her, not being able to keep anti-rejection medications down can be dangerous and also, most scary, unexplained vomiting can be a sign of heart failure or rejection.

Ugh. This is our reality of the world we live in. It doesn’t mean that Hana is going to ever experience heart failure or rejection and I don’t live that way, but it does mean that it is always a possibility that must be considered. My heart is on the edge every time I again must consider this again. Why am I wasting time potty training when we could be out and about experiencing life? But I don’t live life this way, nor do I take it for granted like everything will now be “normal” and we never have to worry again, that would be denial. It’s a balancing act and my heart is always on the edge.

After getting blood work in the ER and some time spent observing Hana after she ate and drank, everything looked perfect and they let us go home with strict orders to return right away if she threw up again. They were kind of pushing to just admit Hana overnight just in case she kept vomiting they could give her IV fluids and it would save us a trip back to the hospital in the morning for her Cath Lab/biopsy, which they really didn’t want to cancel (she can’t be dehydrated for the procedure). But Paul and I really didn’t want to spend the night back in the hospital. So, at 1am, we went home.

We got home a little after 2am and after a few hours of sleep Hana and I left for the hospital at 7:30am. Things when smoothly for the preparation and during the actual Cath Lab procedure. I went back to the PACU afterwards and Hana was still out cold. They decided not to do the usual echocardiogram post-procedure because she had just had one the night before (the risk was low of a complication they might find on an additional echo).

One of Hana’s transplant Nurse Practitioner’s came to the PACU to do an exam, as usual. Hana was just starting to wake up. Unfortunately, the NP heard a gallop – an additional heart sound. Hana has had this before, with her original heart and it is often(? Or usually?) a sign of heart failure or rejection. I felt cautiously crushed. Now this gallop on top of unexplained vomiting was starting to look concerning, despite everything else looking good.

My heart is on edge. So the NP is trying to get a hold of the attending cardiologist from last night and in the meantime another transplant cardiologist is headed over to listen and the NP talks about moving us out of the PACU and getting an EKG and an echocardiogram anyway. Hana is wide awake and goofy in her post-anesthesia bliss and she is mostly concerned with eating nearly four cherry popsicles and watching cartoons.

The cardiologist arrives and does an exam and listens carefully. The gallop is gone. She explains that sometimes anesthesia wearing off can cause this or something like that but I don’t listen too hard because I’m too busy feeling relieved. They review the echocardiogram and a bunch of other things (like the pressures in her heart that they measured in the Cath Lab which were great) for awhile and again ask me to explain the vomiting episodes. But in the end everyone feels very confident and relieved that all is well and the cardiologist just reminds me that I can always call any time night or day for any reason even if it’s just, “something just doesn’t seem quite right.” Tomorrow we get the biopsy results that measure rejection.

As we are getting ready to leave, Hana’s primary transplant cardiologist shows up just to check in to see how we are doing after all the craziness. I always appreciate that. He reminds me that sometimes little kids just throw up for reasons we never know. Yup. I’ll take it as a fluke (especially because now I don’t have to bleach everything in my house to kill the germs).

Now I’m tired and Hana was really tired. We took off her diaper that we went back to for all this and I think she was happy to be rid of it. It’s like she’s just picking up where we left off in potty training. I’ll take it, happily.

One year ago

On this day last year, December 7th, Hana was getting her Berlin Heart. I can’t believe all that has happened in the last year and we are so incredibly grateful to be where we are now – HOME! Not in the hospital. I do wish we were spending time with some family for the holidays but we will get to do that soon enough!

I have good news and sad news. First, the good news is that Hana gained 100 grams when she was weighed last Wednesday! Everyone was quite happy. Let’s just hope this continues as Hana finds her own, new weight gain curve.

The sad news is that our friend Zack passed away on Wednesday. He had a double lung transplant in October and ultimately it did not go well. After being on life support, ECMO, for weeks he decided he was done fighting. It seems that everyone who knew him is heartbroken. I know we certainly were and still are. Zack was a good kid who was dealt a crappy hand, although he was blessed with devoted and loving grandparents who were also his legal guardians.

Zack’s family lives outside of Tucson and his grandfather, Jay, moved with Zack to the Ronald McDonald House to care for Zack while he waited for donor lungs. Jay was one of Hana’s favorite people at RMH and he has an old-school, east coast, unpolished chivalry about him that is friendly, thoughtful, respectful and decent without unnecessary refinement. As you can imagine, this has been heartbreaking and devastating for Jay and his wife Patty. Not only did they have to return home without Zack but all of this, I’m sure, has been a financial strain for them (they are both still working). If you feel moved to do so, please consider contributing to their GoFundMe: https://www.gofundme.com/f4e4kyus

Rest In Peace, dear Zack and may all who loved you find peace too, in their own time. I hope Jay and Patty don’t mind me sharing this photo:

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Meanwhile, at the Yago house, we are getting ready for Christmas. So far, Hana seems very excited about the Christmas tree and Christmas songs. She’s been enjoying taking some of the Christmas ornaments off the tree! We’ve been busy making some of our own homemade Christmas ornaments too. We are trying not to go crazy with gift buying, but it’s been a little hard after giving and getting nothing last year.

Speaking of Christmas gifts, if you are looking for a nice artwork gift to give this year, our friend Gina who painted the portrait of Hana, has a nice selection prints and original artwork for sale for a limited time. Check it out: http://eugeniamancinihoran.bigcartel.com


I know I am planning to get a print! Gina has been a great, supportive force in our lives.

Last but not least, I want to share a few photographs a friend of ours took for a project several weeks ago of Hana and I at home.

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Photograph by Francine Zavala
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Photograph by Francine Zavala
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Photograph by Francine Zavala
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Photograph by Francine Zavala
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Photograph by Francine Zavala
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Photograph by Francine Zavala

Here’s a photo from my iPhone: