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
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Hana at the fountain after her transplant.

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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:

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