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!

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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.
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Smiling so big her eyes closed in excitement (of standing next to a waterfall!).
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She loves riding Aunt Christine’s horse!
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Its fun wearing mom’s flip flops.
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A tree swing a Free Forest School!
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Hiking in Hana’s favorite park – Glen Canyon!
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Examining the tree log she wants very much to cross over the ravine.
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Doing her own “face painting”.

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Halloween!

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

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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!

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4:30 OR Time

So, all of a sudden things are moving along quickly. Blood is drawn and IV is placed. IV fluids are started. Hana is finally napping. 

OR time is scheduled for 4:30, pacific time. Of course, that could always change. They want to move Hana to the CVICU right before surgery to secure a bed for her there. The hospital is completely full so we have to vacate the room as quickly as possible too!

A Heart For Hana

This morning we got the call (a literal wake up call) that they had a matching donor heart for Hana. We were at home. We are in shock. Also, there is still a chance that the transplant might not happen, although it’s slim. But still we are feeling cautious. Actually, I have so many competing emotions it’s hard to know what I feel – many things.

Today they will do some last minute bloodwork – they always check antibodies again to see if anything has changed. If something drastic has changed then they could pass on the heart. They will start an IV. Hana’s feeds have already stopped so have her blood thinning medications. She will be hungry. She also seems to be getting some two year molars. She will be cranky!

Then there is the donor and the donor family. What can you ever say about the loss of a child? Saying is not adequate. We feel instead. The lives of two families are forever changed. We are so grateful. There are no words, not for us or them.

We will keep you posted! Surgery could be as early as late this afternoon.


191 days in the hospital, 172 days post-Berlin Heart, (164) Last Day On The Transplant List!

Half A Year

It’s been a great week and a half! We’ve hit a lot of milestones too. First, we passed the half a year mark since Hana was first admitted to the hospital (this time around). Hana turned 21-months. I celebrated a birthday too.

Unfortunately, Paul was pretty sick most of last week and kept himself and his germs away and at home. We really missed him a lot but we tried to make the best of it too by doing a lot of activities. It was hard and I had a lot of tension headaches, but Hana and I had a lot of fun. 

Hana is still climbing a lot but now she is better at it and I don’t worry quite as much. She has also climbed most things in the room and has moved on to identifying letters and numbers (no, this does not mean she is a genius, she’s just watched a lot of YouTube cartoons!)

Watching our dog Poppy in the PoppOlympics

We continue to go to the music concerts on the adult side of the hospital. Hana loved dancing to the Latin jazz!

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We had a very special treat in that Poppy came for a short visit. Hana had the delight of feeding her treats!

The whole family together!

A few hours free of her NG tube!

Preparing for her dressing change.

Living on the edge!

We are trying to get better at habitual hand washing but Hana turned it into a bath!

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Below is Hana saying some letters and numbers.


This is what happens (many times a day) when Hana kinks her Berlin Heart pump.


Going to check out the hospital prom decorations
Trying to scale the side of her crib!
Watching Jeff, the guitarist, at preschool
This is what Hana’s bathtime looks like

This week Hana’s been throwing up more. I hope she is not getting sick! We are grateful that she has been doing so well. Not everyone is as fortunate and it makes our hearts ache for them. In a lot of ways things are easier here than at home – I don’t have to get up to start feeds in the middle of the night, turn off feeds, give late night meds, wash as many bottles, I don’t wash syringes or draw up meds, I don’t fortify milk or mix formula, there’s no running to the pharmacy or lots of appointments, I don’t order medical supplies, I don’t have to do laundry other than our clothes, I can’t cook dinner or walk Poppy. Ok, the last two I wish were different. Another thing, there is always someone around to help when you need an extra set of hands! We are grateful!
188 days in the hospital, 170 days post-Berlin Heart, 162 days on the transplant list.

Climbing

This post is long overdue. I’ve been wanting to post about something really special that happened last week, but I’m waiting on something, so I’ll just leave you in anticipation. In the meantime, I thought I’d better send out an update.

It’s been a busy couple of weeks. My sister and brother-in-law were here the first week of May and we had a really great visit, which included the excitement of the News Media Event. I’ll post more links as they become available. We’ve gotten some nice feedback so I’m really glad we decided to do it and I really hope it helps raise awareness on the importance of organ donation.

Hana also had another IVIG treatment on Monday and Tuesday of their visit. They had to poke her four times to get their blood draw and to get the IV started. It was awful and I hated seeing the fear in Hana’s eyes, it really hit me hard this time around. They ended up putting the IV in her foot and then another, better IV in the other foot. So, Hana was not able to walk or stand for 24 hours, or even leave the room which was HARD. Thankfully, their were three adults, full-time, to keep her occupied!
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Getting silly during IVIG

We already got the results of her IVIG therapy and she dropped another antibody (If I’m even saying that correctly). So now she is down to 2, which I guess mathematically means she would not be able to accept an organ from 22% of the population because of her antibodies.

Weekends here are generally slow and boring. The nurses are staffed short so they are usually a little too busy to take Hana outside, maybe she can go out once a day. Strangely, we get most of our visitors during the week too so it makes for long days on Saturday and Sunday. It is nice to get visitors to break that up! Sunday (Mother’s Day, we will double celebrate next year when Hana is not in the hospital) and Monday felt like really, really long days. Then on Tuesday we started to get visitors all the way through Saturday.

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A little bored!

Thank you to everyone who visits, it really makes a difference!

Hana continues to go to the music concerts on the adult side of the hospital. It has been really great. She has started to squeal with delight when she realizes that we are walking in that direction. Her favorite performer is still Jeff, the guitarist that plays at preschool on Wednesdays. Sometimes we see him at the concerts in the audience and Hana will stare at him like he’s a rock star.

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Staring at Jeff the guitarist.

One of Hana’s nurses has taken it upon herself to make cloth wraps with velcro to use over Hana’s abdominal dressing. This is to replace the ace wrap that we’ve been using. We are experimenting with what she’s made so far and she is perfecting her pattern based off of our experiences. I am so grateful and honored that she is taking so much time and energy out of her personal life to do this. They have been working out great! Jenny is amazing!

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Replacing the Ace Wrap!

The big news of the week (other than the special announcement that will come in another post) is just that Hana has been climbing everything. She is climbing up her crib, on chairs and stools and on top of the table and on the stuffed chair and couches and up the slide. It was inevitable. I’m glad she is climbing but I can’t turn my back on her for a second! Because of all the blood thinners Hana is on it is really dangerous if she fell, not to mention her pump that goes into her heart! But it is really fun to see her go at it, I fully support it as long as we can keep her safe and she doesn’t irritate the cannula insertion site into her chest.

May 9, 2016

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I also learned how to give Hana her Lovenox shot, which is just a subcutaneous injection, so its not a big deal. I want to be able to give it if the nurse is really busy, especially at night and I want to get Hana to bed.

The waiting has been getting to me a little bit. It takes vigilance on my part to continuously adjust my attitude about it. We are stuck here and we are waiting for a heart, but it doesn’t mean we can enjoy every day and every minute, not that I don’t, but I don’t need to be getting down because we’ve been waiting for five months. That’s right! Hana has been on the transplant list for five months, as of today.

Here are a few more pictures of some activity!

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Cinco de Mayo celebration

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Watching the ants go marching one by one.

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178 days in the hospital, 160 days post-Berlin Heart, 152 days on the transplant list.

Putting Your Heart On Ice

Saturday morning I had the rare pleasure of driving in the car. I was listening to West Coast Live, which is a local San Francisco radio show that is broadcast on public radio. They were interviewing Eleanor Coppola (yes, the wife of Francis Ford). One thing she talked about was something Francis had read in a book and it was the phrase, “Putting your heart on ice”. She described it as meaning a time in your life when you are frustrated and you aren’t doing what you want to be doing, what you were meant to be doing and you were just slogging through, maybe to just make it through a difficult phase.

Some would say that right now we are “putting our hearts on ice”, as we wait. I’ve heard people say that our lives are “on hold” until we can get back home. Certainly, this is true in many ways. But, life goes on no matter what and we’ve tried to live it as fully as we can, even when we are stuck in a hospital. Or, you could we have the privilege of being cared for by an amazing group of nurses and medical staff at an amazing hospital on an incredible life saving device. Because of this, Hana has a chance. We get to watch her grow and develop and really be an incredible joy in our lives. So, our lives do have a lot of joy. Maybe we are exactly where we need to be.

It also really struck me how ironic the phrase “putting your heart of ice” was in that it is exactly this that will happen when Hana gets her chance, her gift of life. A donor heart for Hana will arrive on ice. I hope we can always honor that gift with lives full of joy and gratitude.

It is with gratitude that I’d like to show a couple of things, that Hana has received lately. A couple of nurses made some things for Hana (and one thing is in the works).

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Custom made window cling!
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Hot air balloon decoration!

Then, I’m very excited because an artist I first discovered years ago in Sackets Harbor, New York, when my sister lived there, heard of Hana’s story. She was inspired to paint one day and realized she was painting Hana. She shared this painting with us while it was in the works, but it recently was completed. Its been very exciting and we are really in love with the final work! I feel it really captures a certain part of Hana. When I showed Hana a picture of the painting, she said, “Hana! Hana!”

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by Eugenia Mancini Horan

To see some of her other work, you can follow her Facebook page, The Art of ima.GINA.tion. Or you can visit her website.

Lastly, Hana is still doing great! She did slip and fall and hit her head the other day. This is always a big deal because she is on so many blood thinners. They do neuro checks every hour for the first four hours and then every four hours. She is fine. Tomorrow she has another round of IVIG therapy. She had two play dates in the last week that really made her day! Monday, another one of my sisters and her husband arrive. We are really looking forward to the visit!

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164 Days in the hospital, 146 days post-Berlin Heart, 138 days on the transplant list.