Big Changes Coming and Summer Update

It is already August! There are Big Changes coming both in Hana’s life and to this blog so keep reading to find out more. It has been a good summer. One of the things that has made it great is we got to go on vacation! Our summer vacation was centered around going to the Donor Dash – a 5K run/walk in Denver that honors and celebrates organ and tissue donors. Hana’s heart donor, Leo, was from Colorado and his family attends the Donor Dash every year. When I say his family, I mean extended family from a day’s drive away make the pilgrimage to Denver to honor this little boy’s memory. So, this year we decided to attend as well. My parents, two of my sisters and my brother-in-law’s family all attended as well! There were over 50 people on the “Leo’s Pride” team! It was really, really special to be a part of it.

Our summer trip started off by driving from San Francisco to Breckenridge, Colorado via Utah. We spent a week in Breckenridge with my family and then went to Denver for the Donor Dash. After that we drove to Pittsburgh and spent some time with Paul’s family. After that, Paul drove our car all the way back to San Francisco and my parents came out to Pittsburgh and picked up me and the girls and we spent a couple of weeks at their house in eastern Pennsylvania. I feel very lucky that we were able to do all of this and grateful to Paul for holding down the fort back at home while I took the kids to lots of fun places.

But now we are back in San Francisco (and glad to be together again as a family!) and although the weather has been surprisingly nice for August (it is usually cold and very foggy) it feels like our summer is really coming to an end. At the end of the month, Hana will have her annual biopsy. This means that in the Cath Lab they will use the catheter to go into both the right and left side of the heart, measuring heart pressures, taking a biopsy sample and looking at her coronary arteries. Just thinking about it gives me a lot of anxiety about all the “what ifs” so I will just have to keep working on stopping those thoughts in the next couple of weeks because they serve no use. For now, I’ll just focus on keeping Hana healthy so nothing, like getting a cold, delays her biopsy.

So, now for the Big Changes! First, Hana turns FIVE in a week! Second, Hana starts KINDERGARTEN in a week too (on the same day, actually). I can hardly believe it. My heart might break but I think it will be so fun for her. The school is very close to our house, only a block away, so that is really nice. It will be a big adjustment for everyone!

Finally, I am making a big change to this blog. In order to give Hana the opportunity to have a somewhat “anonymous” childhood we have decided to limit what we will share on social media and what we make available online once Hana turns five. Actually, this was something we had decided on when she was born and when she got sick we decided she/we needed all the love and support we could get and we decided to forgo that. We opened up our lives, Hana’s life to all of you. We do not regret that at all. But we feel that Hana deserves the chance to decide what she wants to keep private and what she wants to share, especially as she gets older. Until she can understand what it means to share your life online we will just limit the sharing until she is old enough to decide.

Now, this doesn’t mean that we are suddenly shutting you all out! We will still post updates and pictures but the posts will be password protected. All followers of the blog by email (you receive the blog post as an email) will be emailed the password and members of the Hana’s Heart Facebook group will be given the password. For all the followers of this blog but not by email, I’m sorry, for now I’m not sure how to share a password. If you know, tell me! And if you are a WordPress Whiz and want to suggest another way to protect privacy, please let me know! In addition to all of this, we will still post two public updates about Hana a year (we may still post about events like the Summer Scamper, Donate Life Month etc.). Also, and I hope I never have to do this, but if anything were to really take a turn for the worse than we would certainly reconsider this plan. In other words, no news is good news.

You, readers, supporters have all been a huge, tremendous and powerful force in our lives, in Hana’s life. We are eternally grateful from the bottom of our hearts. It has been a movement that has changed us forever. It has been a joy to share all of this with you. Thank you for sticking this out with us!

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!

IMG_20180828_115206_web
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.
IMG_20180831_133925_1_web
Smiling so big her eyes closed in excitement (of standing next to a waterfall!).
IMG_20180831_175135_1_web
She loves riding Aunt Christine’s horse!
IMG_20180901_100047_web
Its fun wearing mom’s flip flops.
IMG_20181008_103918_web
A tree swing a Free Forest School!
IMG_20181011_171135_web
Hiking in Hana’s favorite park – Glen Canyon!
IMG_20181011_213810_584_web
Examining the tree log she wants very much to cross over the ravine.
IMG_20181021_161118_web
Doing her own “face painting”.

IMG_20181025_162539_webIMG_20181029_181913_web

IMG_20181031_174940_web
Halloween!

IMG_20181102_154327_webIMG_20181201_152100_webIMG_20181201_152401_1_web

IMG_20181208_174254_web
She still loves carousels!
IMG_20190105_163457_web
She loves baking! We did this pretend cake when she couldn’t eat anything sweet.
IMG_20190106_165742_1_web
First time at the symphony (to watch and hear Mary Poppins).
IMG_20190118_131606_web
She imitating the seal!
IMG_20190206_161557_web
Corrina and Hana at Tinkergarten

Hana_Rock-Beach_edit_web

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

Gratitude

I realize it has been a couple months since I last posted. We have been busy going on two vacations (hooray!), recovering from vacations and getting sick. I can be guilty of making “Perfect the enemy of good”, maybe not perfect, but at least “great” and that makes me slow to post because I want a well thought out post and to share some great pictures of Hana on vacation because I know how much people want to see them (and they are pretty awesome, if I say so myself).

In this post I am not going to tell you about our vacation or how we all got RSV and Hana spent two nights in the hospital. I will share that in the next few days (I promise). In this post I want to share the letter I wrote for the Gallery of Gratitude for the new children’s hospital that is almost completed at Stanford. They requested anyone who wished, to submit letters, notes, pictures or art work expressing their gratitude. Gratitude for the hospital and its staff is something I feel every single day but I hadn’t given it the time to really express it other than out loud at home. It was really rewarding putting it down in words, especially with the thought that someone who I am expressing gratitude for might actually read it. I came to learn later that the letter was passed around, to whom I don’t know, but when we ran into Hana’s primary transplant cardiologist he thanked me for writing it. Of course, I didn’t know what he was talking about at first because I think my brain is just a little too busy and a lot too tired.

So, now I will share with all of you the letter, just in case you might want to read it too:

Every day I say, out loud, “Thank you for another day with Hana.” Often, its just a whisper at bedtime, as Hana is wrapping her 3-year old arms around me and saying, “I love you mama.” Every single day I am so grateful that Hana got to see this day, another day, another chance. At six-months old we thought we might lose her when we got the shock of our lives with her sudden diagnosis of dilated cardiomyopathy and severe heart failure. But she was treated at your hospital for three weeks and we miraculously got to go home with talk about an eventual heart transplant. I remember bending over her in the CVICU sending out whispered “thank yous” to everyone I could think of, the life flight team, the doctors, the nurses, the nurse practitioners, the social worker and child life specialist, the pharmacists, case managers, the woman who spontaneously grabbed me a stack of napkins in the cafeteria when I started crying uncontrollably from all the stress and shock and emotion.

At 15-months, Hana’s left lung collapsed and we were back in the hospital, this time for an unknown amount of time, while Hana was placed on the Berlin Heart to help her heart pump blood until a donor heart became available. It ended up being seven months while your hospital became our home where we slept, ate, and raised our only child.

After Hana got her donor heart and was recovering, she was in a funk. She really didn’t want to sit up or walk around or play, she just seemed in a very down mood.  We were warned that this often happens to patients after their heart transplant. Her nurse, Jay, thought it would be good to take her on a wagon ride to see the fountain outside of the Stanford adult hospital next door. Hana had never seen it before, despite being in the hospital for so long, as she was never able to travel that far while attached to the Berlin Heart.

When Hana got outside and she saw that fountain she started climbing out of the wagon! Then, she started walking for the first time in almost two weeks! Then, it dawned on her that she was walking, for the very first time, unattached to the six foot drive line that had connected her to the 200-pound Berlin Heart. That’s when she started a very wobbly RUN around the perimeter of the fountain. Finally, she was free. Finally, she had gotten her second chance at life.

Although she still didn’t appear joyful or happy, somehow the gravity of this moment was beyond that. It was the earnestness in her steps, the resolve in her chosen path, and the determination on her face that were so compelling. The rawness of her condition – so soon after open heart surgery, and the innocence of her age – just under two-years old, uplifted all of us who witnessed this and brought tears to our eyes (including Jay).

Thank you, all of you, all of the hundreds of people that make this moment possible and all the other moments that follow it. I know its more than just the hours of face-time with medical staff, its the hours of work from people behind the scenes and the hours of research and study and thought and its all brought to us with compassionate hearts and caring minds. Thank you for another day with Hana.

The letter from the Gallery of Gratitude
Hana-fountain
Hana at the fountain after her transplant.

snap60227

Thank You Nurses

Tonight (Monday) I had the great honor of being the parent speaker at the Nightingale Awards, recognizing nurses at the children’s hospital. It was a great privilege to get to put into words how thankful we are to all the great nurses we had (we had some great nurses and nurse practitioners outside the hospital or in clinic as well). The two nurses that won Daisy Awards for the care they gave to Hana were also there and I was happy to see them recognized again. Many of the nurses that Hana had were there and either won or were nominated for an award.

It was suggested that I share my words from the evening, so here it goes:

A little over two years ago, in August of 2014, my husband, Paul, and I welcomed our first child, Hana, into this world. When our daughter was four months old she developed a minor cough. It was so minor I almost didn’t mention it to her pediatrician, and as predicted he didn’t think there was anything to worry about. But five or six weeks went by and her cough slowly started to sound wetter. Then one day she suddenly threw up. Then in the middle of nursing she would suddenly stop. And I thought, babies cough sometimes and throw up sometimes and get distracted while nursing, right?

But she threw up again and again the next day and we started to worry. One evening after she threw up and seemed very quiet  and I was scared. The next morning we took her to a new pediatrician, because our insurance had changed to Kaiser. The pediatrician ordered a chest x-ray. We went downstairs for the chest x-ray, which showed an enlarged heart. They whisked us back for an echocardiogram and afterward the cardiologist walked us next door to the emergency room to wait to be transferred across town to UCSF.

At UCSF my daughter seemed to decline rapidly. Her heart was in severe failure. They worked on her for hours, well into the night. Things looked bad and then worse and then the next morning they sat us down and told us our daughter would need a heart transplant. We were in shock, and reeling that a persistent cough had somehow led to her needing a heart transplant.

After one day at UCSF, our daughter was life flighted here. In the process, there were talks about ECMO. When we arrived here, a team of people got to work furiously. As they worked, I sat in a chair outside my daughters room in the CVICU, shocked, drained, exhausted from being up for two days and my body aching from head to toe.

We were lucky. Our daughter got better. It wasn’t without some very scary moments but she didn’t need ECMO. And after two weeks in the CVICU and one week on 3 West she was discharged. Of course, our home life was turned completely upside down with medications and a feeding pump and NG tube, and lots of appointments, but we got to be home.

It was last November, after nearly nine months at home, that I noticed my daughter was breathing fast while sleeping and we took her to the nearest ER. There, they transferred her back down here and discovered that her left lung had collapsed. The weight of her enlarged heart had just become too much and a tiny touch of rhinovirus was all it took to tip the scale.

For three weeks they kept her intubated and attempted several ways to get her lung to expand. There was no success and after a very scary failed extubation, it was clear that her heart just couldn’t take it. That’s when they decided to place her on the Berlin Heart, a ventricular assist device that would help her left ventricle pump blood.

The Berlin Heart is a 200 pound machine on wheels housing an air compressor with a laptop sitting on top. During open heart surgery, two cannula are attached to the heart, one exiting the left ventricle and another entering the aorta. Each cannula exited the body and attached to a chamber that hung at about groin level. This chamber is what pumped her blood. There is a six foot tube that connects this external chamber to the rest of the machine.

Being on the Berlin Heart meant that our daughter would have to stay in the hospital until a donor heart become available to her. They told us the average wait was 6-8 months. We are lucky, in that, she would not have to spend the time waiting in the CVICU and two weeks after getting the Berlin Heart, she was moved to 3 West.

Because of the nature of the device it meant that our daughter would have to be closely supervised if she were to leave her room and would always have to be accompanied by a specially trained nurse in order to leave the 3rd floor or even go outside. Because of the short battery life, we were restricted to 20 minutes of time with the device being unplugged. It often felt confining.

Paul and I, basically packed our bags and become residents of the hospital. This was our new home. We lived here, we ate here, we slept here, we paid bills and raised our daughter here as best we could. We decorated her room and set up a play area. She had a few playdates from friends that came by. We had a routine that included, PT and OT, preschool, blood draws, dressing changes, nap time, scavenger hunts around the 3rd floor and a little time outside throwing things into the fountain or walking around the front of the hospital. That was our life.

We were lucky because our daughter actual became quite healthy – she learned to walk and nearly run. She tried to climb things and she usually felt well enough to play. Then came The Call.  After more than six months in the hospital, one Saturday morning we got the call that a donor heart had become available for our daughter. It is a moment flooded with so many strong and mixed emotions that I can’t describe.  A moment I’m sure we will never forget.

That was May 28th. She went into surgery that afternoon and in the wee hours of Sunday, May 29th we saw our daughter wheeled out of the elevators on the 2nd floor with a miraculous, new heart.  One week in the CVICU and another week back on 3 West and on June 12th, nearly 7 months after being admitted our daughter was discharged to the Ronald McDonald House. After being away from home for nine months, we have now been back at home for almost two months.

Throughout the crazy journey, we’ve had excellent care from the whole team of people here. We had amazing doctors and nurse practitioners, explaining the worst and best case scenarios, the game plan, the risks, the side effects, what to hope for and what to be realistic about. They did a great job guiding us through the process from one big step to the next.

But I think in life we rarely jump from one big step to the next. Life is a series of moments. And when you are in the hospital with your sick child trying to survive from one moment to the next, the only other person there with you besides family, is a nurse. It is a nurse who is down in the trenches, doing the nitty gritty, taking care of details, making sure your child makes it from one moment to the next.

Its nurses who foreshadow the details of what is to come in the next big step and how to prepare yourself. No one has more experience in sitting in a room with a patient and their parents than the nurses. That experience can be the guidance you so desperately need to get from one moment to the next. While the game plan for your child is set by the doctors, it is the nurses that actually take you through it.

The nurses we had, and I say ‘we’ sometimes, because in so many ways the nurses take care of the family, not just the patient, they were usually the ones to remind you to eat and drink and rest and sleep. It was a nurse that told me it was okay to go home for a couple of hours when I hadn’t left the hospital in three weeks. They watched my daughter, often sitting her in their lap and showing her cartoons on her iPad, while I got out of the hospital for an hour here and there. They comforted her while I snuck down to the cafeteria for coffee. They brought in decorations for my daughter’s room, and small little trinkets or toys they thought she would like to play with.

We even had a nurse that made custom wraps to help keep my daughter’s Berlin Heart dressing on more securely and comfortably than the ace wrap. It was a nurse that put her arm around me when I broke down crying in my daughter’s room that first day in the CVICU. It was a nurse that my daughter held out her arms for to get picked up when I wasn’t there to hold her.

The nurses we had were our daughter’s best advocates and they taught me how to advocate for things I didn’t even know I could advocate for. They brought up things that no one else had thought of to ensure that my daughter was getting the best possible care and had the best quality of life possible in a hospital setting.

Sometimes it was big things, like getting moved into a more comfortable room or talking directly to the attending physician a concern. But often it was a lot of little things, that they often had to work hard to make happen, things like making making sure my daughter got to go outside at least twice a day or making sure blood draws went smoothly or procedures and dressing changes didn’t happen in the middle of her nap. It was those little things  that add up, and in the big picture, they made day to day life easier and more comfortable during a long hospital stay.

The nurses we had exemplified excellent standard of care. One standout example of this was when my daughter’s Berlin Heart completely stopped working unexpectedly. Now, this device is considered extremely stable and for it to just stop is pretty much unheard of, but it did stop and my daughter and I were not even in her room when it happened.

It was because of her nurse and the other nurses that additionally responded, that this emergency situation was handled incredibly swiftly and calmly without any harm to our daughter. I had never been more impressed by how unruffled the nurse appeared to be and how smoothly the rest of the response unfolded. As parents this helped keep us calm and reassured, something you always cling to when you have so much to deal with with a sick child.

As days dragged into weeks and weeks dragged into months in the hospital, what really became apparent to me, through the culmination of many of the things we experienced, was not just the excellent care our daughter received, but the dedication of her nurses.

Dedication shows itself in compassion, sympathy, thoughtfulness, diligence, playfulness, affection, kindness, and even excitement over good news, like receiving a new heart or finally getting discharged from the hospital.

After spending so much time in a hospital, meeting other families and patients and having to sometimes witness their suffering and pain and even loss, I can’t imagine how nurses are able to cope with this themselves day in and day out.

What I see is their dedication to nursing, dedication to their patients, dedication to the families, by showing up each shift, making lives better or easier or a little happier during challenging times.  We certainly very much appreciate that. And oftentimes it is the attitude of the nurse that can really change the outlook of your day.

As a parent, one thing that really touched my heart over the long haul, was these nurses become your co-worker, as you work side by side to care for your child. They become your partner in your child’s care. The become like your neighbor, the familiar faces you see in the place where you live. And sometimes they even become your friends as you learn each other’s stories,  you learn about their families, where they are from and what they love outside of nursing. I think this simple human connection is what makes the difference for parents and patients between existing in a hospital and actually living life in a hospital.

Thank you nurses for all you do. Thank you for sharing the burden of our hardships and the joy of our triumphs. Thank you for treating my daughter as the precious life that she is and for welcoming us into your hearts.”

Paul and I attended the event and it was really great to see so many familiar faces. I do wish we had seen more of the nurses Hana had while in the CVICU (some were nominated for awards but were not in attendance), but we had a really great time.

Hana, of course, continues to do well although she seems to be on this new kick of putting things in her mouth. I don’t know why this is starting since she is normally very good about not putting things or her fingers in her mouth. I suppose it is a toddler-boundary-testing thing. I hope this particular one doesn’t last too long.

Thank you nurses, everywhere!

Good Night

Hana was wide awake for many hours today. She spent a lot of the time looking around. We tried to entertain her with toys, songs, games, books, music. She’s not quite ready to entertain herself, it seems. She isn’t quite looking or acting like herself yet. She will look at you for long, long moments.

I’m hopeful and then almost scared of my hope. I need to remain in the present moment. That is my coping strategy. My baby, with a very sick heart, is sleeping (hopefully) down the hall where a nurse is constantly watching her. That is what it is, presently.

I love Hana. She would not fall asleep tonight. Much like it would be at home, on a normal night, I finally had to tell her “Good Night” and leave the room so she would allow herself to fall asleep.

There are so many people to thank. I’ve had people tell me I am strong, if that is so, it is only because I have been carried by all the love, support, help, thoughts and prayers of so many people. Thank you. It has touched us so deeply.

Here are some photos from today:

20150220-231756.jpg

20150220-231811.jpg

20150220-231828.jpg