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!

Patient Hero

We have two special things to share with you! The first one is that on April 30th, Hana became a big sister! Corrina Mae Yago arrived after a fairly quick and easy delivery. My mother was here for a few days before the birth and several weeks after to help everyone with the transition. Hana has been really great with her baby sister and is very sweet. She is feeling the pull away from me (to take care of a baby) and has been understandably emotional but really, she’s handling it like a champ!



All of this made Mother’s Day really special for me – I had my two girls and my own mother and we didn’t have to spend it in the hospital (like last year)!


So far life with a newborn has been pretty good – I say that and I fear that Corrina’s fussiness has not yet completely shown itself. The last few days has included those crazy, fussy late afternoons/evenings that challenge your mental health! Before that and while my mom was here we did get out and about and helped Hana have some fun. Hopefully I’ll still be able to get out of the house for some fun outings with Hana and Corrina.

This brings me to our second special share – in about a month will be the annual Summer Scamper fundraiser race for the hospital and Hana will represent the hospital’s Heart Center as the Patient Hero! You can read Hana’s Patient Hero bio by clicking on this link:
https://scamperblog.squarespace.com/home/2017/4/21/meet-hana-your-patient-hero-for-the-betty-irene-moore-childrens-heart-center
You may remember that last year, just a week after being discharged from the hospital after her transplant, Hana attended the Summer Scamper – you can read about it in “A Great Summer Scamper“. We are putting together another “Hana’s Heart” team and you can donate to our team by clicking on the link below:
https://my.supportlpch.org/fundraise/team?ftid=116471
If you would like to join our team, please let me know! I will be walking in the 5K with Hana. Although I would love to run the 10K again this year, I think it is too soon after having a baby to be running!

We are VERY excited to have Hana represent the Heart Center and to support their continued research into treating children like Hana. Because of them, Hana has survived her hospitalization and thrived in life. Because of all they have done for Hana and our family we have enjoyed an amazing year together outside the hospital – that’s right, its been almost one year since Hana’s heart transplant! Hana has never been stronger, happier or healthier! She has been eating and gaining weight and enjoying all the activities a toddler should get the chance to enjoy! She is living life!

As I write this, it is the last evening of my life as a thirty-something. Tomorrow I enter a new decade. As I reflect about back on my thirties, but more this last year of being 39, I feel like this last year has been the best of my life – Hana finally got her gift of life, we all got to move out of the hospital, we got to move home after being at the Ronald McDonald House, we got to live life (with Poppy) back at home in San Francisco, we got to add a new baby to the family. All of this happened in the last year. It is all so incredible to me. It has taken a village of people to help us get here and we are incredibly grateful! I am excited for our adventures of the next decade!

 




A Special Announcement 

This update is long overdue, so I apologize. I have been incredibly busy and exhausted which will all make more sense when I tell you our special announcement. But, first things first, let me tell you how Hana is doing!

Hana has had some ups and downs. The highs are very high and the lows haven’t been bad enough that she had to be admitted to the hospital, but she got kind of close. The first two weeks out of the hospital were amazing! She was eating a ridiculous amount of food on top of getting three tube feeds a day so her weight jumped up. Then each week after that we would drop a feed and she also stopped eating so much at the same time. She was incredibly happy and had a huge jump in her speech development. My mother came out to help out for four weeks. Hana loved that.

The first two weeks of my mom’s visit were also great. She had slowed in her eating but was still doing well. She finally weaned off her steroid after nine months. About 48 hours after her last dose, coincidentally the day after pulling out her NG tube, she was not right. Her blood pressure was really low and she was kind of lethargic and sleepy. I was also away all day (first time since she had her transplant) so Paul and my mom handled talking with the team at Stanford. By the time I got home she perked up and seemed much better the next day. But things started up and down after this – with more GI symptoms, a few vomiting episodes and diarrhea. She would have a bad day then a better day followed by another bad day. We took her back to Stanford and the retested her for adenovirus, which came back negative (it would have been very unlikely she had it again). They said if she got worse or if she didn’t have intermittent good days then they would admit her to the hospital for observation. We avoided this but ended up putting the NG tube back in to keep her hydrated.

This persisted for a good ten days but fortunately Hana seemed on the mend for the last few days of my mom’s visit. My mom was here for four weeks! The illness made me kind of anxious because I was dreading spending more time back in the hospital. This last week Hana has been really great, playing and singing. We just need to encourage more walking, running, jumping and climbing- it seems she has not quite gotten back to where she was in December. Hana also had another heart biopsy in early March. This was her regularly scheduled biopsy, since her last one was in December. Her heart pressures were the same and her biopsy result was a 1a. Hana has always gotten a zero for rejection but they treat 1a the same as zero so 1a is good news. Her next biopsy is her one year biopsy! This will be more invasive as they go all the way into the left side of the heart (right now they only go into the right side of the heart and don’t go any further) and the recovery time is longer (she will spend several hours in the short stay unit afterward).

So, as I said earlier, we’ve been incredibly busy. My mom was out for the month of February and we, along with an organizer, finally went through all the chaos of piles, boxes and bags of things building up over the last year or more and got some projects done around the house. We still had stuff we put aside to make room for Hana’s big, first birthday party. I was slowly making progress on all these things but not fast enough for our approaching deadline. This is part of our special announcement.

So here it is, (drumroll please) projected for May 3rd, Hana will become a big sister! That’s right! We are expecting another girl in about six weeks! We are very excited and nervous. The nervousness is about caring for Hana, with all her needs, and a newborn. But Hana will be almost one year post-transplant and things should be (and already are) much easier. We are also nervous that this new baby will have a perfectly healthy heart even though we were told the chances of her having dilated cardiomyopathy is so low that they don’t recommend against having more children. I am getting extra ultrasounds and I also had a fetal echocardiogram and everything looks great! I think this is why we delayed announcing anything – we wanted to know more information on the health of the baby. But by the time we knew things were looking good Hana had gotten sick and then we were preoccupied with her hospitalization. We are getting more excited with each day! I think Hana is going to be a great big sister!

I must add that this time of year – February and early March is hard for me and even more so this year. It’s the time of year when we were shocked by the news and events of Hana’s heart failure and our lives and what we thought parenthood would be like forever changed. I have a very hard time looking at photos of Hana leading up to her being diagnosed with heart failure and hospitalized and I can now see in her baby face the signs that we all missed. It breaks my heart. Going through and organizing all the stuff in the house, including Hana’s baby stuff, reminded me again of that time and it has been very emotional, more so than I imagined it would ever be. There is more lingering sadness and grief than I thought. I guess the imprint on my heart, from this time, is much deeper than I realized. Even now, writing about it is very hard.

I don’t want to linger in past trauma, not when there is so much promising life to live, but sometimes these things have a way of grabbing hold of you until they run its course. So, I’m letting it run its course, slowly, and hoping it doesn’t create any additional and unnecessary drama. 

We have so much to look forward to. We have so much to be grateful for! Thank you, everyone for all your support!







This video is Hana saying hi to her nurse practitioner, Jenna, from Hana’s days on the Berlin Heart.

 A Bittersweet Homecoming 

After a little bit of drama Hana was discharged and we got home early this afternoon (Saturday). The drama involves the lab at Stanford and the Kaiser pharmacy (unrelated dramas). We’ve been waiting on the second negative adenovirus PCR to be cleared to stop the Cidofovir treatments and go home. Everything else with Hana’s condition was resolving or resolved. The resident was working hard to get all our discharge stuff ready so we could go sometime on Friday. She was also working with the lab to get that last test result. We were all hoping it would be negative, of course, and they agreed to hold off one day on her scheduled Cidofovir infusion to get the result so she didn’t get an unnecessary treatment.

The lab promised a result by the end of the day Friday. After repeated calls nothing had come by 5pm and the answer we got was that whoever ran the test didn’t use enough blood from the vial that was sent and therefore they couldn’t get a result. They didn’t need more blood, they just needed to run it again and since it was already Friday end of day it would have to wait until Monday. This was obviously not okay with a number of people as it would mean at least two more possibly unnecessary days in the hospital and the risky Cidofovir treatment all because someone made a mistake in the lab. It took the attending physician to make some calls to ensure someone stayed late and ran the test again. The result came in some time after midnight – another negative!

The other drama with the Kaiser pharmacy was less severe. The resident talked with someone at the Kaiser pharmacy to ensure we would be able to get three medications we needed upon discharge. Two of them were just medications that had expired over the four weeks in the hospital. The person at the pharmacy said they would be ready. The pharmacy called to tell me they would be ready that afternoon. They called Paul when they were ready to be picked up. Paul went Friday night to pick them up and they only had one ready. He was told to go to a different pharmacy to pick up the others the next day. Today our friend went to pick up the prescriptions while I packed up the room. They didn’t have what they needed to fill either prescription and gave her a hard time saying we should have picked them up yesterday (why? If they don’t have them and can’t fill them). I hate having to come up with threats and ultimatums but it had come to this. In the end they begrudgingly called around and found out Kaiser in San Francisco could fill them. We shall see if that happens.

Now we are home! We ended up having way too much stuff at the hospital that we now have to unpack! Hana was cranky about leaving because I think she knew things were changing and she didn’t quite understand what “going home” was going to mean. Once we got in the car she was pretty happy and once we got home she got right to work playing with her toys and discovering the Christmas presents that she had been too sick to enjoy (she still has a few to unwrap!). She is running around the house and talking up a storm. I’m exhausted, way more than I thought, and it’s going to take at least a few days to get things settled. But we are HOME and it’s amazing. Thank you to everyone who helped keep us fed, sent cards and gifts! It’s helped tremendously.

I call this homecoming bittersweet because across the country, from the hospital where I was born, my grandfather is also being discharged into hospice care at home. After a traumatic car accident eight years ago where a man was trying to kill himself by running a red light at 70mph and hit my grandfather’s car, my grandfather has battled lots of very painful and complex medical conditions. In the last week, some new problems emerged that have caused a lot of pain and their treatment interfere with  the maintenance of other conditions. It’s very hard for me to digest all of this while being exhausted and dealing with Hana’s own hospitalization. It’s also really hard to be so far away especially when we’ve been unable to visit our families back east for two years. It feels really hard.