Four Years Ago Today

Today, February 11th, marks the 4-year anniversary that we found out about Hana’s heart. I think about that day, 4 years ago when our lives changed forever. Hana had a mild cough that had persisted over two months, and was progressively sounding worse, but not too bad. About a week before this, I was holding her and she suddenly vomited all over. Then it happened again a few days later and again a few days after that and then she was vomiting once a day or in the middle of the night. Then, sometimes, she started getting fussy while nursing and would stop after a couple of minutes and I remember her forehead felt sweaty. A couple days before she took a three hour nap which was so unusual for my difficult napper of a baby. But it was the vomiting that worried us most. The vomiting just seemed like it took a lot out of her. The night before, she vomited right when Paul got home from work and she looked terrible. She was very, very quiet and pale and I think she actually looked scared. Something didn’t feel right. But a mind has a way of explaining things away and logic has a way of quieting fears even when they should be heard.

Over the next few days, we would recall these things again and again for doctor after doctor. They would nod their heads knowingly, they had heard this story countless times. It’s a little uncanny how similar the stories are, when you’ve heard enough of them. Of course, parents think it’s something else. Even most pediatricians would think it’s something else, because it almost always is. But not this time and luckily, we got a pediatrician who wasn’t convinced it was something else. I remember hearing the nervousness in her voice when she told me to take Hana downstairs for a chest x-ray. I remember the x-ray tech looking at me after he took the image. He was solemn but said nothing. He knew that image didn’t look right. I remember the urgency in the doctor’s voice a little later when she called me back because the x-ray showed an enlarged heart. I remember crying on the phone when I called Paul to tell him. I knew an enlarged heart was bad, I just didn’t know any more than that. I remember back at the medical center, about twenty minutes later, the echo tech and the cardiologist staring intently at the image of Hana’s heart on that screen. The cardiologist asked me to wait in a room, not an exam room, just a nearby room until she came back. People had been rushing around and talking in low voices. I don’t even remember exactly what the pediatric cardiologist said – something like “she’s in heart failure”, “we don’t know yet how bad”, “yes your husband should come right away”, “yes you will definitely need to cancel your trip to Hawaii in two days”, “she will probably be in the hospital at least two weeks”, “she will be transferred out to UCSF”, “there is still a lot we don’t know… ”

I was surprised when the pediatric cardiologist walked with us next door to the Emergency Department at the hospital. She stayed until they had Hana hooked up to the monitor, my first of many, many experiences with this. She had explained that an ambulance would come as soon as possible to transfer Hana to UCSF hospital across town. It was the brand new hospital, only opened one week. The pediatrician came into the emergency department to talk with us too. She was just checking in with us and she gave me her personal cell phone number to call her if I ever had any question, I could call her at any time. I remember Paul getting there and staying with Hana so I could go outside to make a phone call (the reception in the emergency department is terrible. I remember telling my parents what was going on – it was an enlarged heart, they were transferring her to the big, prestigious hospital across town, we had to cancel our trip to Hawaii and could they let my sister know (we were going to Hawaii to visit her). My parents were sitting in their car in the parking lot outside of a restaurant, waiting to go inside to celebrate my grandmother’s 96th birthday. My dad asked if I needed my mom (the pediatric nurse) to fly out. I felt like a child – a scared, lost child who needed her mom. I always think “no” to those kinds of questions. Can Paul and I handle this ourselves? Of course we can. But should we? I croaked out a “yes”.

I remember seeing Judy and Neal through the doors of the Emergency Department. They were standing looking into our room. They would take our dog Poppy. I remember being relieved that someone local was near and ready to help. I remember watching Paul walk out of the Emergency Department with that empty stroller, so he could take it just four blocks back to our home and then meet us at UCSF. I remember texting a couple of people on the ambulance ride to the new hospital. My friend Lisa and my friend Rose.  Hana was asleep in her carseat in the ambulance. I remember arriving at some back entrance to the hospital and going up to the CICU into a room no other patient had yet occupied in this new hospital. The staff was still trying to find the supply room. I remember the attending physician happened to be the head of pediatric cardiology at the hospital. She and a neonatologist worked to get IVs started and maybe an arterial line? Hana was crying and fussy and wouldn’t be still. They were having a very, very hard time even to get an IV going. Paul and I were bent over her bed for hours showing Hana her favorite book from home. We talked and whispered and sang and tried to keep her calm. It seemed very important, whatever the cardiologist and the neonatologist were doing. I remember the cardiologist taking out her phone and calling her friend to tell her she wasn’t going to make it to the big birthday dinner of their other friend that night, she had to stay at the hospital. Eventually they gave up and decided to go with the two IVs. We were supposed to rest. I remember looking down at Hana in a hospital bed and in a hospital gown with all the lines hooked up to her thinking, “How did this happen so fast? How did we wake up this morning thinking our baby was just a little sick?” I was exhausted and I wanted to sleep and yet, I didn’t. How could I sleep when my baby was like this? I remember thinking, “I hope this is the worst day of my life.” I think deep down I already knew the worst was yet to come.

That was February 11, 2015.

The flood gates had been opened and water gushed so fast I didn’t know if I would ever be able to get another breath again. The next morning, the same pediatric cardiologist, the head of her department, sat us in her office and told us that Hana was going to need a heart transplant and she was transferring her to Stanford. We were stunned speechless. Hana seemed to really decline rapidly. I remember my mom, the pediatric nurse who had spent years in the trenches of a pediatric intensive care unit, arrive that morning and within minutes she was calling my dad to fly out too – things were much worse than she thought. I don’t remember too much of that day – they were going to send Hana to the cath lab but then decided it was too risky. They decided to intubate her. We sat in the parent lounge trying to eat food our friends Lisa and Chris had brought. They got Hana ready for her life flight to Stanford. A helicopter? Really? The staff prepped us for how different it would be at Stanford. The helicopter pilot questioned me on how suitable I would be to sit in the helicopter with him. I said goodbye to Paul and my mom who were driving down to Stanford. I got into the helicopter. It floated up into the night sky. The take off was complicated because it was the first time they had transferred a patient out of this new hospital and also the air space was restricted because President Obama was arriving at San Francisco airport. Twelve minutes later we landed at Stanford. The rushed her inside and into the CVICU where a team of people were ready. I stayed out of the room because it was too crowded and busy, there was no place for the mom right now. It was late and it was otherwise very, very quiet on the unit. One of the cardiology fellows pulled up a chair for me outside the room. I sat in it and my whole body ached, it ached so bad I would have a hard time getting to sleep that night, after not sleeping for two days.

I remember trying to make a deal with God, knowing full well that it didn’t work that way. I remember thinking, “This only happens to people in the movies and those movie-parents are amazing and inspiring. Paul and I aren’t that special. We are not those parents. How is that we are now those parents that are doing this?” But our lives changed and our hearts and our minds. And those flood gates that opened? They never close, maybe they just trickle, but they never close. And that sigh of relief at the end of the day? It never comes. And that dream of “I’m going to do this crazy, hard, scary, intense thing of having and raising a child that I will love like I never knew I could love”? That dream is changed, forever. All those thoughts I had about raising a child and what it was to be a parent, they changed forever on February 11th. I can never “unknow” what I know now. There is a peace of mind that I will never know again. I struggled with that for a long time. But now I don’t even remember what it feels like to have it any more. The only thing certain is Uncertainty.

But there is more love than you know. I asked for it, I did. For once in my life, I asked for it because I knew this was more than just me and Paul and Hana. This was about people and community and humanity and love and even more. I think of Kelly and David and their son, Leo, who would become Hana’s heart donor, her angel. I think of their sacrifice and pain and choice and their love. In the face of pain, there is still love.

Thank you all, for being part of that. You have been an incredible force of goodwill and love.

And what about today, February 11, 2019? Hana is going to Forest School and swim and dance. She underwent some neuropsych testing this fall and everything came back great. They wanted to test her because she has been on cardiac bypass which can cause oxygen deprivation and sometimes they see some delays or learning disabilities. We will test her again in three years. We have been very busy. We toured some schools for potentially starting Kindergarten in the fall, although we are still inclined to wait another year. Hana is eligible to start, although she will just be turning 5 on the first day of school.

What we are battling now are Hana’s GI issues. She has had chronic diarrhea since the summer and over the past week she has been increasingly complaining of stomach pain. As a parent, it’s hard to swallow. No one wants to see their child suffering. We did some food elimination diets including dairy free and then two weeks of no sweet (no sugar, no fruit, no artificial sweetener) but nothing helped. Hana complied like a champ. She is so good, it makes my heart melt. So, now we are left blaming her one immunosuppression medication – Cellcept. There has been talk about switching her to another medication but we had to decide a little while ago if we wanted to make that switch and we decided to wait. If we switch her medication we have to do it 4-6 weeks before her next biopsy so that they can check for any rejection with a new immune suppressing drug. Hana’s next biopsy is in a couple days on Wednesday, February 13th. So now, we will have to wait until the summer when she has her next biopsy. That is, of course, assuming that Wednesday’s biopsy results will show No Rejection and she will not need another biopsy until the summer. So, maybe we should have done the switch. I don’t know.

Please keep Hana in your thoughts and prayers on Wednesday for her biopsy. We will update you when we get results!

Hana on the beach in Hawaii, where she said, “but I want to swim naked in the ocean!” but then she learned about jellyfish, sadly.
Smiling so big her eyes closed in excitement (of standing next to a waterfall!).
She loves riding Aunt Christine’s horse!
Its fun wearing mom’s flip flops.
A tree swing a Free Forest School!
Hiking in Hana’s favorite park – Glen Canyon!
Examining the tree log she wants very much to cross over the ravine.
Doing her own “face painting”.




She still loves carousels!
She loves baking! We did this pretend cake when she couldn’t eat anything sweet.
First time at the symphony (to watch and hear Mary Poppins).
She imitating the seal!
Corrina and Hana at Tinkergarten


The Donor Family Letter

Today, when my phone rang and when I saw the phone number come up, a little gulp of fear surged through me. It was Hana’s Nurse Practitioner and I was sure she was calling with biopsy results except that it seemed way to early, at 10am, to already have results. Nancy sounded cheerful and immediately said she had more good news. Hana’s biopsy result was a 1a, which is essentially no rejection. I felt incredibly relieved and said “whew!” Out loud. Her next biopsy is not until early May. We will begin to taper her steroids. We also discussed flu precautions, which has me slightly terrified this year. They had no additional precautions than the ones I’ve already implemented. Anyhow, we have reason to celebrate such good biopsy results!

On to the big news that Nancy gave me yesterday. After discussing Hana’s biopsy yesterday Nancy’s said she had more good news and then she said, “You have a letter from the donor family.” And then she handed me a plain white envelope, very thin, which appeared to have one sheet of a typed letter inside. I immediately started crying. I took the letter feeling like it was the most precious paper I had ever held in my hands.

I felt so many things at once that I can’t even really identify them all. They were just very very big emotions. Not since we received the call that there was a heart for Hana have I felt like this. I felt intense gratitude, relief, excitement. I felt the intensity of loss, grief, suffering. I even felt love and hope and desire. Of course, I did not open the letter until Paul was home. I cried on and off throughout the rest of the day. I waited. This is one reason why I did not mention this yesterday – I still had not opened the letter.

The letter was short and heartfelt. The donor was a boy, a little younger than Hana, who died unexpectedly. He had a contagious smile and was full of life – running, jumping, chasing. He was an only child. The parents said they think every day about the recipients who received his gifts and would love to hear how they are doing. We have decided that we are not going to post any identifying details that were shared by the donor family. As much as we love and appreciate all of the readers of this blog we want to respect the privacy and anonymity of the donor family.

It has been very emotional and we are still processing it all. I am incredibly grateful that the donor family reached out first. As much as I have wanted them to know our gratitude for their choice, it just never felt like it was the right time. Not just yet. Now, it feels like the right time! In a few days, after a bit more processing, Paul and I will write a reply. I hope we can somehow find that words that might begin to express how we feel. I hope we can perhaps offer some solace knowing that their son’s heart beats within Hana and explain how much she loves life. I hope we can continue to be the best stewards of this most incredible and amazing gift for Hana.

Thank you donor family. You are in our hearts every night.

With Love,


Finally, Another Biopsy

Today, Wednesday, Hana finally had her follow up biopsy to the 1b result she got back in November. They wanted her to have her follow-up biopsy a month later in December but Hana was sick and so it was canceled and couldn’t be rescheduled until the end of January. We got to go to the brand new hospital, which is right next door to the old hospital. It is beautiful and new and fun for the kids. Biopsy days are always exhausting for me. Its the preparing, getting up early, packing, figuring out care for Corrina and then there is the mental and emotional drain, which is probably the most exhausting. This time, my mom was here for the biopsy. She and Corrina came with us to the hospital, which makes things easier for us.

When Hana’s biopsy was over and she was in recovery but still asleep from her anesthesia, they called me back to the Consultation Room to talk to the surgeon who did the procedure. They almost never do this for routine biopsies so I started to get really worried that things had not gone well. I sat in the Consultation Room for a long time trying to calm my fears. I had Corrina with me while my mom went back to the recovery room where Hana was waking up. After 20 or so minutes someone finally came in to tell me they had talked to the surgeon and she had to go and would talk to me later. I was relieved because I was almost positive that this meant everything was fine. But for twenty minutes I was pretty stressed.

Hana’s Nurse Practitioner came out to talk to me and was looking for a private room, which made me nervous again because they don’t do that unless they have some kind of news. We found a empty sitting area and went over Hana’s results so far. Her heart pressures are improved since her last Cath Lab procedure and are in normal range of a transplanted heart. Her echocardiogram also looked fine. So that’s reassuring. That is all good news. Her biopsy results should be in tomorrow (Thursday) so we will know if they are seeing any rejection. Then, Nancy told me she had more good news. I couldn’t imagine what this could possibly be. Unfortunately, I will have to keep you all in suspense for now. More on that in the next day or so.

In the meantime, I want to introduce you to two special boys that are the sons’ of a childhood friend of mine.27605374_10155962716568830_1905743854_o

Michael and Jon Dougherty are participating in a fundraising event through the American Heart Association. They are doing a jump rope event where they learn to jump rope, learn about their heart and raise money to help kids with special hearts. Both boys have chosen to jump in honor of Hana. If you feel moved to do so, you can choose to support their fundraisers by following these links:



Stay tuned!

Happy New Year

I know, I know, this update is long overdue. I’m sorry. I’m tired. It must be having a baby that makes me too tired to keep my eyes open too long as soon as I sit down. Actually, I’ve been tired mostly because I spent almost the entire fall season sick. Since we got back from Hawaii in mid-September and we all contracted RSV, I’ve had a nearly non-stop flow of bad colds, with a week in between. Luckily, colds I got that the kids did not get first, I did not spread to them. Corrina got the croup right after Thanksgiving which spread to me and then Hana. It took me the longest to get well (five or six weeks), even Hana got better long before me. This is not bragging (but may sound like it) but I’ve had people say to me, “I don’t know how you do it. How do you do so much?” Well the answer is, I don’t, I hit a wall. Because my body obviously told me I was doing too much and I needed to take better care of myself. I also struggled a lot this fall with anxiety or maybe you would call it PTSD having to do with all we’ve had to deal with Hana. Dark thoughts kept creeping into my mind and it took a lot of energy to overcome them. Maybe I’ll say more about that later. This has been too much about me already. Now, more about Hana.

Hana is doing GREAT! She is LOVING life. Truly. She goes to Forest School two mornings a week for preschool. This is 100% outdoors in Golden Gate Park in the woods. They climb trees and play with sticks and dirt and pinecones. She loves it. I would have loved the idea of it even if she weren’t immune suppressed but its an added bonus that she is less at risk of exposure to other kids’ germs. The teachers are amazing too. If you are wondering what they do in the rain, they stay outside and play in the rain and mud! I dress her with a base layer of wool long underwear and she has good rain paints, raincoat and boots.

Hana started swim lessons this fall too. She also really loves swimming and is so excited that she is will to sit poolside for 30 minutes (with a stack of library books), while I take Corrina in for her lesson first. I think its amazing that, after nearly nine months of not being able to even take a bath submerged in water, that she loves swimming so much.

Lastly, the latest addition is that Hana started taking dance class. I was not going to add another activity but she was asking to dance all the time and when I showed her a few preschool dance videos (check out Petite Feet on Amazon streaming video) she fell in love. So she started a ballet/tap/tumbling class with just the right mix of structure and age-appropriate fun and she loves it! She is very motivated and driven all on her own. I think she actually would enjoy a more focused class, which surprised me, considering her age, but its more than good enough for now.

In between all these things we try to make it to the playground, the beach, the Children’s Creativity Museum (if you go, check out their Sketchtown exhibit, its amazing), the Bay Area Discovery Museum, the San Francisco Zoo, and the California Academy of Sciences. We keep fairly busy. I think I may be trying to overcompensate for all the time Hana has had to spend stuck in the hospital. But its now winter/rainy season here in San Francisco during one of the worst cold & flu seasons in a long time and we are hibernating a little bit to keep away from the germs. So, I think we will have plenty of inside play time.

Unfortunately, the last cold caused Hana’s biopsy in December to be rescheduled. She got a 1b, which Stanford treats as mild rejection (other transplant programs treat it as no rejection) in November and was supposed to get another follow up biopsy in December. Now, that’s rescheduled for the end of January. The theorize that the 1b was a reaction to the RSV in September. This is why it is so important for her to stay healthy.

Okay, now I’m frustrated because the rest of this post got deleted somehow. Oh well, I think you got the main points! Happy New Year!

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:

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:

Zack and Jay
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:

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.

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

Here’s a photo from my iPhone:


Heart of Hope

You want to hear something crazy? There is a guy, a couple years younger than me that went to the same small, rural high school in Pennsylvania. He and his wife had two kids and when the younger one was six months old they were told she needed a heart transplant. She eventually was put on the Berlin Heart and got her transplant (it was actually her second transplant). It’s crazy only because if you knew the rural area where I grew up and how many kids need a Berlin Heart you would not believe the odds. Unfortunately, about seven months after the second transplant their daughter died of sudden cardiac arrest. I encourage you to read the story, I can not do it justice here. My heart aches when I read the story. I’ll be honest, it is also terrifying.

In honor of their daughter, they created Heart of Hope – The Caralynn Titter Foundation whose mission is to provide support for families dealing with pediatric heart transplants. This Saturday (that’s tomorrow!) they are doing a fundraiser race for their foundation – the 2nd Annual Heart of Hope 5k & 1 Mile Family Fun Run in Newark, Delaware. My very oldest (not eldest but most number of years) friend, Erin has organized Team Hana and if you’d like you can donate to their team to support an excellent cause (because if you are reading this blog you probably understand how important it is to support families dealing with pediatric heart transplants!) click this link.

Thank You!

In Hana news, its been a good week. Things feel like they might be settling down instead of just trying to keep our heads above water. Hana had another cardiac cath and biopsy on Wednesday. The results are good – pressures are good, same as last time, and biopsy results are 0! I am so relieved! I always have a build up of anxiety a few days before.

Hana even gained back some weight! Her eating tends to have sporadic results. One day she loves her smoothie and the next day she won’t touch it. One day she wants to eat cream cheese and the next day she just wants strawberries. I guess she is kind of a normal toddler. Lately she seems to want fruits, veggies and water which would ordinarily be wonderful but I keep trying to push the high calorie foods as much as possible.

Lastly, Hana’s sleep patterns are starting to really wear on me. She has always been the kind of baby/kid that needed a while to settle into sleep but it has gotten bad. Naptime is not usually too bad, 30-60 minutes (unless grandmom is trying to get her to sleep in which case I just hear lots of noise and laughing coming from Hana’s bedroom). Bedtime is very challenging. Hana tosses and turns for one to two hours before she falls asleep. By the time she is asleep it is so late and I am so tired it is hard to get anything else done. I’m wondering if what’s causing this is the steroid that Hana has been one since her transplant.



Thursday night I was drawing up Hana’s medicines for that night and the next day. I was a little distracted because I was setting up the evening meds so my mom could easily give them. I was also in a slight hurry because Paul and I were going out to dinner. I grabbed the Omeprazole (to treat Hana’s stomach while on some harsh meds) and the Amlodipine (a calcium channel blocker used for high blood pressure) out of our medicine refrigerator. They are in the same size bottle and virtually the same color. I drew up 5mL of Amlodipine and two syringes of 1.5 mL each of Omeprazole. The problem was that it should have been opposite. Hana gets 5mL of Omeprazole and twice a day she gets 1.5mL of Amlodipine.

That night my mom unknowingly gave Hana 1.5mL of Omeprazole. The next morning I always start with Omeprazole as Hana’s first medicine. It always makes her gag and is more volume than other meds and I don’t want her throwing up her other meds from gagging, so I give it first. She didn’t even flinch when she got the 5mL of medicine. Then I have her the Tacrolimus (anti-rejection med). Then I waited about 20 minutes and gave her Valcyte (to prevent cytomegalovirus), diltiazem (protect coronary arteries, lower blood pressure), and then I picked up what was supposed to be Amlodipine and I thought it looked a tiny bit yellowish. When I gave it to Hana she gagged and then I knew I had made a mistake. I knew it was a big mistake as I knew Hana was already on the highest dose of Amlodipine she could get. I also know that too much of a blood pressure lowering medication is a dangerous thing.

I immediately called Stanford. They started discussing what to do and had me take another blood pressure (100/62). Then they asked me to call Poison Control to find out how much was a toxic level. So I called Poison Control (and was glad the number was already programmed into my phone) and they said they send people to the ER if it’s 0.3mg per kg (that’s about two times Hana’s dose) and Hana got 0.45mg/kg. I was already gathering stuff to go to the emergency room at Kaiser while the pharmacist finished talking to me. He did say she would probably be fine but I needed to go in. Then one of the doctors from Stanford called me back to discuss the plan. 

My mom and dad are visiting but Paul was not at home and had the car, so we hurried out the door with Hana to walk to the ER. It’s only five blocks (but a few uphill) but it was pouring rain. I kind of ran and pushed the stroller and I arrived at the emergency department drenched and out of breath. Paul had gotten there a minute before us. Hana was just fine through all of it. My mom and dad arrived a few minutes later just as they were taking us back.

They got Hana set up in a code room and took her vitals. Everything looked great. Hana was not happy about being there but adjusted like the little champ she is. The doctor got all his info and went to call Stanford. They decided to monitor her in the ED a bit longer and then move her up to the pediatric ward until 8pm that night. They decided against transferring her to Stanford because it just didn’t seem necessary. They brought in a dose of atropine (the antidote) in case they needed it. Of course they wanted to get an IV started in case they needed it and I requested the pediatric team to come and start that. While we waited, the attending physician from the pediatric ward walked in and that’s when we got the greatest, serendipitous surprise.

In walked the doctor who said, “you probably don’t remember me …” but I said, “Of course I do!” I turned to my mom who was next to me and said, “This is Katherine Herz. She is the one who ordered the first chest x-ray that showed Hana’s enlarged heart!” I wrote about Dr. Herz in “The First Thank You“. She seemed excited to have the opportunity to care for Hana again and had been following her progress. It seems that the first incident with Hana also made a big impact on her and she said she used Hana’s case all the time as a teaching tool. I was very glad to have the opportunity to thank her in person. I don’t think a week has gone by where I haven’t thought about trying to send her a meaningful thank you note, but she was hard to track down. 

We chatted a little bit about how Hana was doing and what was going on. I asked her what made her order a chest x-ray because so many doctors told me that most pediatrcians would not have done so. She told me (humbly, I might add, saying it was the great training she got at UCSF) that it was February and she had seen sick kid after sick kid. Then Hana came in with a persistent cough and a little vomiting, just like lots of sick kids, but the first red flag was that Hana didn’t have any other symptoms (runny nose, sneezing) and was nursing so little that I had to pump afterwards. She said something wasn’t adding up. The second red flag was when she listened to her heart it sounded “distant” and she couldn’t hear anything on the left side at all. That’s when she was worried it was something pretty serious. We are grateful to her, who knows how badly Hana would have gotten before she was treated. If it had gotten much worse Hana might have had a stroke or even worse.

Then a bunch of nurses showed up to start the IV, which was the worst part of the day. It ended up not being the pediatric picc nurses (their first try failed) but our fantastic ED nurse who got the IV started. Unfortunately it was in Hana’s foot so she wasn’t allowed to stand the rest of the day. Then Hana got transferred upstairs to the pediatric ward where we waited out the rest of the day. They kept Hana hooked up to the monitor for O2, heart rate, respiration rate. They took her blood pressure every 30 minutes. I was able to give Hana the rest of her anti-rejection meds but they held her enalapril (of course, it’s another blood pressure med), lasix, diltiazem, and other non-essential meds (about five more). Nothing significant happened. Her blood pressure never got below 91/52 (which is actually the range they want her in).

The rest of the day we ate hospital food, played with Hana, watched cartoons. Paul worked. Dr. Herz came by again to chat some more. The resident checked in with the doctor at Stanford at 7pm and finalized the discharge instructions. At 8:20, 12 hours after the accidental overdose, we were walking out of the hospital.

One of the NPs from Stanford called me right before discharge to see how I was doing. I thought that was great. Not one person I encountered had even a hint of criticism towards me. Everyone makes mistakes and has made mistakes. At least I caught it so early. As for my own reaction, I was so focused on getting the situation treated that I didn’t have room to feel bad. Later, I did feel bad, especially when Hana was getting her IV and was crying and screaming. I felt bad my parents had to spend a whole day of their visit in a hospital. But I was surprised how little I felt bad. I kind of felt guilty for not feeling more guilty. But I think, by far, the main feeling I experienced was Alarm. I was very alarmed, even frightened, that I would make such an error. I think most people who know me would say I am always on top of these things and I’m very responsible and cautious. But even I make mistakes. So the real lesson is humility. Be kind to others who make mistakes, be kind to yourself and come up with methods to prevent making future mistakes.

We are grateful to the great team of people at Kaiser and Stanford looking out for us! It was really great to see Dr. Herz, the silver lining in all of this!

No Word Yet

Things have been really good. Hana is making progress in her feeding therapy – we’ve dropped another feed and she continues to eat and drink more. Her Prograf levels are within the goal range (finally!). She is happy and we are making it out for trips. Unfortunately, the team at Stanford has decided that Hana is not allowed to be at home full time yet, they want her drug levels (Prograf) to be stable. We are not taking Hana to get more blood work until next week, because this week was stable they will make no changes. So, the soonest they would get another drug level would be next week with her blood work so it seems the soonest we would be allowed to take her home permanently would be next week.

I am so disappointed with this, but trying to just move on.

Things at the house are coming along. Unfortunately, our garage was burglarized. It seems when you are having your house painted (which we are, we need to get it done before Hana can be at home permanently) and there is scaffolding up it is like posting a big “Welcome!” sign for thieves. It is hard to say what was taken because I don’t know what was where anymore but for sure a PlayStation and the painter’s tools were all stolen. But the house is looking great and everything with the paint job should be done this week.

Another unfortunate incident is that our bike at the Ronald McDonald House was vandalized. As far as I can tell only the front wheel was stolen. It is almost a guarantee that someone at the Ronald McDonald House is the one who vandalized the bike, because the area is only accessible to residents. I also think I know who did it and the kid from the family has since gone back home. This is hard for me to swallow.

But again, we are trying to move on.

Things inside our house are slowly getting done. Things are getting organized and cleaned, bit by bit. It kind of feels like we are just stuck in between moving – we can’t really move out or move in to any place. I get very sad when it is time to pack up for the night and go back to the RMH. I especially hate leaving Poppy. Hana seems to really enjoy having Poppy around and I just can’t wait for our family to be a complete unit again!

We’ve been trying to have a lot of fun with Hana. She still has to endure days where we get chores or errands done and certainly where we spend most of the day at the hospital for appointments. In between we try to go to the playground, pool or the beach. We had a great time over the weekend taking the Roaring Camp train from Felton to the Santa Cruz boardwalk. We had Hana wear her mask the whole time (with a few breaks when we could be away from people) and I was constantly wiping off her hands, but it was great fun!

Tomorrow (Wednesday) Hana has another clinic visit. I’m going to advocate again for them to let us move home, but I’m feeling kind of defeated. Still, we are very grateful and loving life outside the hospital!



Two Months

Two months ago today Hana’s chest was closed up after getting her new heart and we saw her wheeled out of the OR elevator into the CVICU. Just thinking about that moment is overwhelming with emotions – relief, joy, fear, grief and some emotions I don’t have names for. I think of the family of the donor and I like to picture a little spark of life from their child beating inside Hana. Maybe that picture can bring them some comfort or instead knowing that we honor their child every day by living life fully and with gratitude.

There’s some unfinished business I’d like to tidy up before continuing. I was reminded when I saw that today’s “Feel Good Friday” blog post from the hospital is an update on how Hana is doing post-transplant. You can read the story here:

I want to share two things of unfinished business. The first one is about one of Hana’s nurses. One of Hana’s nurses, Marisa, is the nurse who responded so amazingly the day Hana’s Berlin Heart stopped working. I wrote about it in the post “Emergency“. Well, because of her amazing response (and also the other nurses who responded were amazing in their own right) Marisa was awarded the Daisy Award, which is an award thanking extraordinary nurses. I was so proud when she got the award, even though I did nothing, but I was very proud of Marisa and grateful for having such an excellent team supporting us. She won the award back in May and it was the special news that I mentioned in the post “Climbing” but I was waiting to share it and then Hana’s transplant happened and I forgot! Here is a picture of the sign Hana and I made to hang on her hospital room door after Marisa won the award.


My other order of business is that I wanted to share some more of the beautiful images taken by photographer Anne Daiva, while Hana was still in the hospital and on the Berlin Heart. We just recently got to see them. They really remind us where we’ve been, how far we’ve come and how grateful we are. Life is so good.

Photo Credit: Anne Daiva Photography
Photo Credit: Anne Daiva Photography
Photo Credit: Anne Daiva Photography
Photo Credit: Anne Daiva Photography
Photo Credit: Anne Daiva Photography
Photo Credit: Anne Daiva Photography
Photo Credit: Anne Daiva Photography
Photo Credit: Anne Daiva Photography
Photo Credit: Anne Daiva Photography
Photo Credit: Anne Daiva Photography
Photo Credit: Anne Daiva Photography
Photo Credit: Anne Daiva Photography
Photo Credit: Anne Daiva Photography
In current news, Hana had a great week. We spent the day at home on Tuesday and got a lot of things organized and cleaned. Several women in the neighborhood came over and got to work. I love my neighborhood and my neighbors! There’s still a lot to do but it might have to wait until the painters are done painting the house. Hana seemed to love being home and drank more milk than I’ve ever seen her do. On Wednesday I took her to a public wading pool (we went early and left when it started to get a little crowded). She loved it! She was smiling and laughing and splashing! On Thursday she had her feeding appointment and in the evening she got to go swimming again! Thank you Stacy! We had a great time.

Still, when I hear stories of other kids that don’t do so well I get very scared. It continues to be a bit of a recalibration every time, every day. Heart transplant is not a cure. Things are going well today, I celebrate that. I focus on what is going on now. I suppose it will be something constant that I will need to remind myself of, but, not only does it stop my fear from blooming out of control, but, what I am left with is how grateful I am for what I have today.

Lastly, Hana had her clinic visit today. They did not give us a date when we could move home. They want her Prograf levels to be consistent before they let us go. I think that is reasonable. They did seem to think that two weeks would get us there. They also said that Hana could go to music class when we get back home and that she could attend birthday parties! I was pretty excited to hear that. Maybe we will even have a birthday party for her! It is coming up very soon!

Thank you everyone, for all that you’ve done.