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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Catching Up

It has been a crazy few months. I am actually a little dumbstruck by how busy it has been. First, I decided to embark on this journey of leading Tinkergarten classes for young children. These are outdoor, child-led, play-driven, nature-inspired classes for children 18-months to 8-years old. It has been fulfilling and yet, A LOT OF WORK. Between the training, the trial classes and the preparation, I am sinking. I know this will level out after I get more experienced but for now, my head is spinning. Second, Corrina’s blood levels tested high for lead so we had to get our home inspected for lead exposure. Her levels were not very high, but still, we had to get a lot of painting, cleaning and repair work done to protect against possible lead exposure. We did get Hana’s lead level tested again (she never had any detectable lead) and it came back as nothing, so that’s one relief. Third, we’ve been preparing for our condo conversion, including our inspection. I’ll spare you the details but basically it means we are legally separating our two unit house (which was once a single-family house). This is very common in San Francisco. It is costly and timely. Lastly, is the usual recovery from vacation (this is a real thing!) and recovery from summer colds.

But enough about that boring stuff!

Hana is doing great! Memorial Day weekend we went camping, thinking the girls were on the other side of the sickness they both had right before we went. Not so. Then the coughing started for both Hana and Corrina. I ended up having to take Hana in for a chest x-ray and a bunch of other tests. Everything came back fine. Paul and I managed to not get sick although we were feeling a little traumatized from the camping trip, because it ended up being so hard with sick kids.

Hana had her ballet recital, which was really fun. If you really want to watch her two dances, you can here:  https://vimeo.com/276555941
Just skip to 19:42 for her class’ tap dance (“If You’re Happy And You Know It”). And 39:44 for her class’ ballet dance (“Bunny Rabbit Blues”). Otherwise, here are a few professional images captured by the photographer Natalia Perez from the dress rehearsal.
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Next, we went to our dear friend, Megan’s wedding. Hana was excited for months/weeks for Megan’s wedding! Now, Megan is very special to us because she came to visit every week while Hana was in the hospital and living at the Ronald McDonald House. It gave me some time to get away for an hour or two and it gave Hana some special time with an amazing person. Even when Hana was back in the hospital for a month with adenovirus, Megan came. We are so sad that she moved to Arizona a few months ago (good for her, but we will miss her so much).
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Then, we had the highly anticipated Summer Scamper, the walk/run on Stanford University’s campus to raise money for the children’s hospital. Thank you to all who donated to the Hana’s Heart team. It was a small team this year and we really missed some of our past year’s team members. But it was a lot of fun. It was our first year doing the event after knowing about Hana’s heart donor, Leo, so that made it really special. We even had a few of Leo’s family members participate as virtual racers! One racer even made a really cool shirt. I had no idea of this until after the event (I guess I need to find more time to check my email.). We went down to Palo Alto the night before where I had gotten a deal on a hotel with a pool. We went swimming and then we went out to dinner. The next day we were able to get to the race quickly. We walked the 5K together as a family and then Hana did the fun run for 3 and 4-year olds! She had mixed feelings about it (because I didn’t run on the track with her, I thought all parents had to be off the track, yet some parents stayed, so it made her a bit sad). I did run right next to her in the grass, though.
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The next weekend we went to Camp Taylor’s family camp for the first time. Camp Taylor is a camp for kids with heart disease. We didn’t go last year because I wasn’t sure how that would work out with a newborn. This year was the first year they had camp at their new facility, so it wasn’t quite what it normally is as they continue to build the camp. Hana had an amazing time. She is still talking about it and can’t wait to go next year.
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After all that fun in June, Paul and I were exhausted. But then we had to rush around to do the lead work, where we had to be out of the house for a couple of days, and then get ready for the condo conversion inspection. I had to get a new phone somewhere in there. Thankfully, the lead work is DONE and the condo conversion inspection is over for the time being (let the real work begin!). My summer season Tinkergarten classes started and I’m getting in a bit of a groove with that so now we are playing catch up on everything else. This past week all of us except Paul had a cold.

We are looking forward to some more fun in our jam-packed August. My parents are coming out and we are headed to San Jose for the annual California Homeschool Conference. This is my first time going, so we will see what the homeschool landscape is all about in California. I’m really looking forward to it, as we need to make some big decisions in the coming months about Hana’s schooling. Between now and then, we need Hana to stay healthy because she has a big day coming up right after the conference, on August 13th, when she has her annual cardiac catheterization and biopsy. Then, a few days later its her birthday and then a few days after that we get to go to Hawaii to visit my sister’s family and my aunt and uncle! Please keep some positive thoughts and prayers coming Hana’s way for her cardiac cath & biopsy. We want her to be healthy and we went everything to look beautiful and come back as no rejection.

Thank you all for following Hana’s journey. We always appreciate all the support. I hope my updates can be more timely in the coming months when, hopefully, things quiet down a little bit for us!
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A Very Special Heartversary – Remembering Leo

Today, Memorial Day, is the 2nd anniversary of Hana receiving her new heart, her gift of life. Yesterday, far away in Colorado, a family, Leo’s family, was remembering him on the two-year anniversary of the day he died. Leo was a toddler, full of life, who touched the hearts of those around him in a special way. He was, of course, cherished by his parents, Kelly and David and his extended family. His first word was “Dada”. He started walking at 10-months old and quickly started running after that. He loved ZZ top. He liked to eat goldfish crackers, puffs, potatoes and BBQ ribs.

Leo had a few unexplained seizures, the first one at six-months old after his six-month vaccinations. He was admitted overnight to the hospital. Then, a couple more after that, but everything checked out fine, so they figured it was something he would outgrow and put him on medication to prevent further seizures. Then, one day in May while sitting on his father’s lap he became unresponsive. They administered emergency medication, called 911 and he was rushed to the hospital where he had a grand mal seizure. Leo was life flighted to the children’s hospital in Denver and 12 hours later his seizure finally stopped but left him in a coma that he would never come out of. After 8 days in the hospital, he was gone.

When you have a child, your heart changes forever. You are never the same person again. So, I imagine when you lose that child, your heart gushes with so much grief, it must feel hard to ever stop or slow down. Your child is gone but you are still that changed person, never going back to being that child-less person you once were and now there is a piece of you so vital that is now missing. So, in the midst of all of that, David and Kelly, Leo’s parents made the incredibly selfless choice to donate Leo’s organs. His kidneys went to a recipient and his heart, his perfect heart, came to Hana. So sweet, sweet Leo was gone but his heart beats on as Hana’s gift of life.

On this day, I celebrate Hana’s second chance at life and remember and cherish Leo’s life. The boy he was, the people who loved him so much. Please, if you can, take a moment or more and say a prayer, spare a thought, send positive vibes to Leo’s family and remember what a precious gift he was to them.

At the end of January we received a letter from Leo’s parents. We replied with our own letter a couple weeks later. Then, a week or so ago we got a call from the nurse practitioner at Stanford saying that the family has requested a consent to release our personal information, so that we can contact each other without having to go through the donor network. I sent in the release but since I had found Leo’s mother, Kelly, on Facebook, I decided to send her a message. So, that’s how we’ve been communicating. I hope in the coming months, years we to get to know the family better and learn more about Leo.

In other news, things have been busier than ever. Corrina turned 1-year! Hana successfully weaned off steroids! Hana had another biopsy which came back good, a 1a, which they treat as no rejection. Her next biopsy will be in August for her annual cardiac catheterization and biopsy. We went back to Pennsylvania to see family for a week! I’ve been doing training and preparation to lead Tinkergarten classes this summer (outdoor, play-based, child-led nature activities). Both kids were pretty sick this last week but managed to recover enough for us to go camping this Memorial Day Weekend. Now, they are settling into some bad coughing, so hopefully this too can pass without any drastic measures.

We are in the final month before the Summer Scamper which support the children’s hospital at Stanford – Lucile Packard Children’s Hospital. You can support Hana’s Heart team, especially in memory of Leo. With your help more children can get a second chance at life.

Lastly, please remember the importance of organ donation. If you haven’t already, register to be an organ donor.

Building A Team

Hello all! There are many things happening right now, in April, and much to look forward to in the next few months! I’ll tell you much more about them in just a bit. March, on the other hand, was a heavy month. The heaviness was caused by the passing of three people in a short span of time. It weighed heavily on my mind but even more on my heart. It started with the sudden passing of my 33-year old cousin. Then, about a week later, my uncle who had a single lung transplant last year, passed away as a result of an infection. Finally, a week later, another young child we knew from the hospital who had a heart transplant, passed away. I could say many, many more things about these three people and how each death affected me personally, as the words have been forming a web of thoughts in my mind, but the heaviness feels too much for this forum.

Amongst these dark clouds, life continues on. Hana had another check-up with the heart transplant team. She got a clean bill of health and they came up with a new steroid taper schedule. As I made the prescribed decreases in her steroid, Hana ate less, whined more, experienced intermittent diarrhea and seemed more tired. Finally, last Tuesday she just didn’t want to get out of bed. She would go to the bathroom and go right back to bed. She would sit up to take her medicines and go right back to sleep. The transplant team at Stanford decided they wanted her to come in. My heart always sinks when I hear this. It means the possibility that this is something serious.

She finally did get out of bed at 1pm in time to go to Stanford. Right before we were about to get in the car, Hana had a massive vomit. I haven’t seen anything like it since before her transplant. My heart sank again that day and I hoped it was just caused by the chocolate ice cream and glass of milk that she chugged. The first words out of Hana’s mouth when she woke up at 1pm was, “I want chocolate ice cream.” Now, this is such an unusual request that I decided to grant it. In addition, I rarely give Hana a glass of milk to drink. So there you have it.

They did an echocardiogram at Stanford and everything looks the same. This was very reassuring. Plus, she was eating a little bit and her energy was a little better. They decided that her symptoms were probably caused by weaning off the steroids. They could still be caused by an underlying GI virus, but time will tell if going back up on the steroids does not alleviate symptoms. It did not seem to be caused by rejection, which is what had everyone worried.

I am happy to report that in the last week Hana has greatly improved. Her energy and mood are much better. She is eating more. She has lost some weight and is looking a little skinnier than usual but I expect that to improve. We will try tapering again in a couple more weeks, but even more slowly. Hopefully she can be off the steroid in time for her next biopsy on May 7th. I guess they see an increase in rejection when patients go off steroids and since Hana has a history of this, we need to hope and pray that she can handle this with no more episodes of rejection.

Other than this fun, Hana has been enjoying Forest School two days a week, dance class and swimming. She also loves going to the playground, playing with friends and checking out tons of new books from the library. For the rest of the family we are all doing well. We got to enjoy a weekend near Lake Tahoe recently and Hana got to play in snow for the first time. Corrina is going to have her first birthday soon! Paul has been busy with work and some golf. I have been working on a few stealth projects.
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One of my not-so-stealth projects is building a team for the upcoming Summer Scamper on Sunday, June 24th in Palo Alto. This is the race event that benefits the hospital where Hana is treated. I have registered our team, Hana’s Heart. This year, we want to dedicate the race to the family and donor of Hana’s heart. Our whole family will be walking again in the 5K. I decided to stick with the family again this year instead of running. Hana will be participating in the Fun Run for 3-year olds! I think she is going to be very excited. If you want to join our team, please sign up by going to the Hana’s Heart team page and clicking on “Join Team”. This year, if I can get my act together, we are going to do t-shirts and hopefully a team picnic after the event. I have no excuse like last year (“I just had a newborn”) to get things done!

Look for more about the Summer Scamper and the Hana’s Heart team in the coming weeks.

April is National Donate Life Month! If you aren’t a registered organ donor, do it now!
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I’ve decided to make myself an advertisement for Donate Life and raising awareness about the importance of organ donation. I’ve made and am making some t-shirts to wear, especially when I am out for a jog. Check back for updates on how that is going!
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Here are some recent photos:

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And don’t forget, register to be an organ donor! Tell your friends and family too!

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,

Kathleen

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:

Michael: http://www2.heart.org/site/TR?px=6657997&pg=personal&fr_id=3191&et=9-2w0hbcXW7w9L1KXVB1_g

Jon: http://www2.heart.org/site/TR?px=9303519&pg=personal&fr_id=3191&et=dhLUceL_IFTUNNl2ChGSDw

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!