This morning we got the call (a literal wake up call) that they had a matching donor heart for Hana. We were at home. We are in shock. Also, there is still a chance that the transplant might not happen, although it’s slim. But still we are feeling cautious. Actually, I have so many competing emotions it’s hard to know what I feel – many things.
Today they will do some last minute bloodwork – they always check antibodies again to see if anything has changed. If something drastic has changed then they could pass on the heart. They will start an IV. Hana’s feeds have already stopped so have her blood thinning medications. She will be hungry. She also seems to be getting some two year molars. She will be cranky!
Then there is the donor and the donor family. What can you ever say about the loss of a child? Saying is not adequate. We feel instead. The lives of two families are forever changed. We are so grateful. There are no words, not for us or them.
We will keep you posted! Surgery could be as early as late this afternoon.
191 days in the hospital, 172 days post-Berlin Heart, (164) Last Day On The Transplant List!
We were overall pleased with the news segments from Wednesday. I wish they had focused a tad more on the importance of organ donation, but it has been a positive experience. Unfortunately, it doesn’t seem that the station Abc7 decided to post a link to their segment on Hana. We did get to see it but only when it was broadcast live.
Below is the link to the ktvu (channel 2) station segment on Hana:
http://scopeblog.stanford.edu/2016/05/05/doctors-at-packard-childrens-extend-life-of-20-month-olds-failing-heart/
Never, in my lifetime, did I think I’d solicit a news story. But, since it’s about Hana and not about me it wasn’t too hard! I wasn’t really nervous to be on camera, we feel strongly about helping the cause, but if there were a way to tell the story without talking to me I would have liked that! Of course, a big part in this decision to solicit a news story was Hana’s personality. She is such a friendly kid and seems to handle attention well. We felt she would be fine with the cameras (and she was!).
We were really glad to add a message out there on the importance of organ donation! Please help spread the word.
Hana’s cardiologist being interviewed My interview Hana, this morning
168 days in the hospital, 150 days post-Berlin Heart, 142 days on the transplant list.
Today a couple of news stations came to cover a story on Hana. Surprise! We wanted to do this in April, for Donate Life month but the scheduling didn’t work out. The hospital’s media relations organized everything and it included an interview with Hana’s primary heart failure/transplant cardiologist. I’ll post more about the whole experience later, but for now, I just wanted to put the word out for anyone that wants to try to watch. I think you can stream it live and I believe it will at least air on the five o’clock news but likely with additional air time.
Saturday morning I had the rare pleasure of driving in the car. I was listening to West Coast Live, which is a local San Francisco radio show that is broadcast on public radio. They were interviewing Eleanor Coppola (yes, the wife of Francis Ford). One thing she talked about was something Francis had read in a book and it was the phrase, “Putting your heart on ice”. She described it as meaning a time in your life when you are frustrated and you aren’t doing what you want to be doing, what you were meant to be doing and you were just slogging through, maybe to just make it through a difficult phase.
Some would say that right now we are “putting our hearts on ice”, as we wait. I’ve heard people say that our lives are “on hold” until we can get back home. Certainly, this is true in many ways. But, life goes on no matter what and we’ve tried to live it as fully as we can, even when we are stuck in a hospital. Or, you could we have the privilege of being cared for by an amazing group of nurses and medical staff at an amazing hospital on an incredible life saving device. Because of this, Hana has a chance. We get to watch her grow and develop and really be an incredible joy in our lives. So, our lives do have a lot of joy. Maybe we are exactly where we need to be.
It also really struck me how ironic the phrase “putting your heart of ice” was in that it is exactly this that will happen when Hana gets her chance, her gift of life. A donor heart for Hana will arrive on ice. I hope we can always honor that gift with lives full of joy and gratitude.
It is with gratitude that I’d like to show a couple of things, that Hana has received lately. A couple of nurses made some things for Hana (and one thing is in the works).
Custom made window cling!Hot air balloon decoration!
Then, I’m very excited because an artist I first discovered years ago in Sackets Harbor, New York, when my sister lived there, heard of Hana’s story. She was inspired to paint one day and realized she was painting Hana. She shared this painting with us while it was in the works, but it recently was completed. Its been very exciting and we are really in love with the final work! I feel it really captures a certain part of Hana. When I showed Hana a picture of the painting, she said, “Hana! Hana!”
Lastly, Hana is still doing great! She did slip and fall and hit her head the other day. This is always a big deal because she is on so many blood thinners. They do neuro checks every hour for the first four hours and then every four hours. She is fine. Tomorrow she has another round of IVIG therapy. She had two play dates in the last week that really made her day! Monday, another one of my sisters and her husband arrive. We are really looking forward to the visit!
164 Days in the hospital, 146 days post-Berlin Heart, 138 days on the transplant list.
Today, Hana’s transplant listing was revised so that she could receive offers for hearts that are not of compatible blood types. For children under two, this has been a common practice in Canada and Europe. This made me very nervous at first.
Yesterday Hana had to get unexpected blood work done to see how much incompatibility she had with other blood types. Hana has A positive blood, so she could receive a donor heart from an A positive and O positive blood type donor. When they measured her incompatibility with type B blood, back in December, she measured 64. I don’t remember the specifics of “64” but I think it means something like the blood titers/antibodies to type B blood was 64, which is high. She would not be able to accept a type B blood donor heart. When they did the blood work yesterday her titers were down to 4!
UNOS (United Network of Organ Sharing) recently changed their rules for children under two, allowing ABO incompatibility to be considered in their listing. Research has showed that children that received an incompatible donor heart actually did better (it was suggested to me that this is because they are watched more carefully). The cutoff is two because a child’s immune system is not fully developed at this age. So, this means for Hana, that when a donor heart because available, she will not be passed up because she has an incompatible blood type. The reason for her titers to be down to 4, I believe, is because of her IVIG therapy.
So, this is good news! (It still makes me just a little nervous.)
In other news, Hana is doing great. My mom left on Monday morning, we were very sad to see her go. I think Hana considers my mom her favorite playmate. Hana is saying lots and lots of new words and continues to use her sign language. She has been a real delight. We are chugging along and I’m trying not to get weary. It’s good to have something like the Summer Scamper to work towards! Thank you to everyone who has donated!
I also stopped pumping about three weeks ago. It has dramatically changed my quality of life! It also means there is now a finite amount of breast milk for Hana to drink, so hopefully she makes some improvements with drinking cow milk and eating! (Some days are better than others).
The rest of this week has been great! I decided to sign up to do the Summer Scamper 10k race on June 19th. It is a fundraising event that benefits the children’s hospital were we are living. You can visit my fundraising page here: https://my.supportlpch.org/fundraise?fcid=661013 You can also visit our Hana’s Heart team page. If you’d like to join our team, please let me know! My friend, Suzanne, is organizing the team. It sounds like it is going to be a great event. The unit here forms a team each year.
This week, Hana got to go to the adult side of the hospital not once, but TWICE to watch live music. She seemed very excited and couldn’t stop looking all around her – there were so many new sights and people. During the music, she mostly wanted me to hold her and dance around. She kept signing “dance”! Our amazing nurse practitioner accompanied us both times.
Dancing with Grandmom!
My mom is still here and she and Hana have been having a lot of fun together.
Hana also had another great play date this week with friends from San Francisco. As you can see in the photo below, Hana has a backpack on. I very reluctantly got Hana a little backpack with a tether on it. She is just getting too fast and I’m afraid she is just going to take off running and forget about the drive line and really hurt herself.
In other news, the issue of freedom outside seems to be clarified in Hana’s favor. This does not mean that a nurse is required to take Hana out front, individual nurses may still decline to take her, but it was made clear to everyone what the protocol is and how to handle it and why it is important to Hana. From the very beginning the medical team has said that they want and expect Hana to meet all of her developmental milestones despite being in the hospital and on the Berlin Heart. I think going outside and getting to explore the great outdoors is important for that! I am very grateful to everyone who has helped make Hana’s life in the hospital as enriching as it has been!
Sadly, things with our dog, Poppy, have not been going well lately. She has been acting out and doing things like peeing on beds, snapping at dogs and whining all hours of the night. This has made it very difficult for the various generous people who have been looking after her. When we pick her up and have her at home with us she is not like that at all. We are not yet sure what we are going to do but we are brainstorming different possibilities.
On Friday, a really wonderful photographer, Anne Daiva, came to the hospital to take some Hana and family photos. Below is a quick sneak peek, but hopefully we will get to share more wonderful images when we get them!
Photo Credit: Anne Daiva Photography
The rest of the images are just life as it is as we wait!
There have been some other fun things that I hope to share soon.
155 days in the hospital, 137 days post-Berlin Heart, 129 days on the transplant list.
April is National Donate Life month. What this means is there is a campaign to increase the awareness about the amazing gift of organ donation and to encourage more people to register as organ donors. If you are reading this blog then you are probably already aware of what the gift of a donor heart would be for Hana and our family. This month, I will be adding some support for this cause in addition to our usual updates. We would like to encourage anyone who is not already a donor to register! If you’d like more information, please read the “Why Be A Donor” page from the Donate Life organization.
The thought of becoming an organ donor is not a pleasant one, especially if you take a moment to consider if you would donate your child’s organs. I hope that moment never comes for you. To consider organ donation at a time when your child has been pronounced brain dead and probably in a situation that was a tragic shock, must be very difficult a midst overwhelming grief. I mention this because this is what a family will have to do someday when they make the choice to give the gift of life for Hana. I want to honor them, their choice and the memory of their child by really trying to feel what it must be like to be in their shoes. It is about human connection. This donor family understands what a gift of life would mean to a family and rising out of their grief they can hope to alleviate some suffering.
Paul and I are both stubbornly independent people, so to talk about this need of a gift of life for Hana is out of our comfort zone. While I imagine anyone would feel uncomfortable, I think for me, I try so hard to “do it all myself” and “not rely on anyone”, and now, here I am, totally and completely dependent on another family choosing the gift of a donated heart. For our daughter to live, some family must make that choice. We will be forever indebted to them. It is no longer good enough to just “Live and let live.” Now, I feel like “Live and help live.” I also see this as a chance for greater human connection. This is why I write this blog. This is why I encourage you to register as an organ donor and to help spread the awareness of organ donation. It’s about a level of human connection.
If you are interested in helping to spread the word, please let me know! Stay tuned for more tomorrow.
Now, let’s talk specifically about Hana. She is doing great! I’ve heard them say she is the Poster Child of a Berlin Heart. She is getting around and developing normally. Of course, she is still delayed in that she is not eating and must be NG tube fed. Monday afternoon she starts her next round of IVIG therapy. I hope it goes smoothly like the last two times. More than that, I hope it continues to help suppress her antibodies so that she can match a greater number of donor hearts. A couple days ago, Hana received a package from my mom. In it was a cabbage patch doll that we had at home and used as a “guest” during our home feeding sessions. This doll already had her own NG tube but now she has her very own Berlin Heart! She also has an outfit that matches Hana, all thanks to my mom!
136 days in the hospital, 118 days post-Berlin Heart, 110 days on the transplant list.
First off, I want to say Hana’s surprise has been delayed again and now we are looking at Friday of this week or Monday.
Second, Hana is doing great! She’s not puking too much, her vitals are stable and we are just working on getting some of her transplant blood work repeated since some of it was done a year ago. She seems to be fairly on track with her developmental milestones other than eating. Her walking is actually shakier than when she was at home and I attribute that to the pump and drive line always being in her way. Some development will be delayed and that’s just the way it is. We are working on independent play skills and sensory learning since that’s where I can actually do something to change what is.
We are settled, as best as we can, in this “camping” mode in a child’s room which is inside a hospital. I still get a bit frustrated at our loss of autonomy and independence, especially when it comes to Hana’s care. At home, I was always tweaking things in order to optimize outcomes for her – such as when to give meds or tube feeds so she doesn’t feel sick or tied down and she gets the maximum amount of normal kid activity and sleep as possible. I was particular, maybe even meticulous. I do my best here but it can be challenging. I get frustrated when people get bent out of shape because they see me whiz down the hallway carrying Hana, pushing the 200 pound Berlin Heart Ikus with a backpack of activities and we are on our way to the seating area on the third floor for a change of scenery. The get bent out of shape because they can’t fathom all that being manageable. Just because they imagine it being hard for them does not mean it is hard for me. It may require a lot of effort, but that doesn’t make it hard or even unsafe. I don’t want to be limited by others’ limiting beliefs. I can be very stubborn that way, but please don’t tell me what is not possible just because you cannot imagine the possibilities. This is the hardest part of living in a hospital (in our current situation).
But. Yes, there is that. I busy myself creating as much of a normal childhood for Hana as possible and maybe that is because I want to enjoy the break from worry and high stress that will come when she has her heart transplant. I know that day must come and hopefully soon. But it is a hard thing to hope for. In order for Hana to live, another child must die. And although that child is not dying so Hana can live and they would have died either way, still, it is the death of a child that will save Hana. Somewhere in the western United States a child is living and breathing tonight who one day, relatively soon, will not be, and Hana will get his or her heart. So, to hope for this day to come soon is hard to wish. But the day is coming with or without my hope and what I tell myself is that we hope Hana gets matched with an available heart soon. But still.
Forever, as long as I can make that stretch, I will be full of gratitude for the family of that child and the child whose heart will become Hana’s. Thank you for the honor with such a precious gift.
I am sick with a bad cold. I suppose it was inevitable with the lack of sleep, but I have become a bit more lax in the hand sanitizing since leaving the CVICU. It is a good reminder to get now versus post-transplant but practicing good hygiene is so crucial. It is also important to take care of myself which is incredibly difficult. But, as Hana’s primary caretaker the stakes are too high to gamble with my health because that is ultimately gambling with Hana’s health.
People really like to tell me to take care of myself which almost makes me mad to hear. I would love to take care of myself! If someone could just figure out how I could get the time to do that I would be grateful! Honestly, this week has been the first really stable week in Hana’s time here so I do finally feel okay about stepping away and taking care of myself. I just need to get a good night sleep or more sleep. My brain is not making sense – yesterday I tried to put Hana’s hand in the buckle instead of the actual buckle.
Fortunately we have amazing friends. Our friend Judy came down and spent the night with Hana last night and tonight our friend Lou is staying the night! Last night, after sleeping in my own bed, I felt like I slept on a cloud (that really was my first thought when I woke up). Other friends are sending food which has been so great. We’ve also been getting a fair number of toys which really helps to break up the monotony! I wanted to be a minimalist parent when it came to toys, but having rotating options has been very helpful.
I really hope Hana does not get my cold because then she will not be allowed to leave the room!
This week has been about going to PT/OT, preschool, going on walks, and trying to get on a sleep schedule. Hana is now on her goal calories of 30kcal/oz for her feeds. She is still getting continuous feeds which is very inconvenient to carry the feeding pump around (another tether!). I am going to push for trying bolus feeds again next week. She has started drinking again – about 4 ounces a day! She is also interested in food and has been doing a lot of food exploration! Hana is still weaning off her methadone and Ativan. Most of her other meds are pretty much at her goal dose although there will be some tweaking as we go on her anti-coagulation meds.
Hana has been happier than I have ever seen her. The Berlin Heart has allowed her to feel better than maybe she’s ever felt. We have so many things to be grateful for! Thank you!
Hana watching Signing Time Good Morning pre-school
Below is a link to a Dateline story about a family we’ve met here at the hospital. I mentioned them when we met the mom, Stacy, in the Transplant Talk post. Three of their five children have/had dilated cardiomyopathy and two have already had heart transplants. Their oldest, Sierra, has had two heart transplants. Their youngest, Gage, is currently on a different ventricular assist device (VAD) than Hana. Gage has a much smaller device and is able to leave the hospital to live at the Ronald McDonald House while he waits for his heart transplant, but his sister Lindsey was on the same Berlin Heart device that Hana has.
This story tells and shows much of what our life is like here (minus the huge additional stress of having multiple children with life threatening heart conditions). The doctors, nurses, rooms and hallways are all too familiar! I see Stacy sitting outside the hospital school on our way to and from PT/OT every morning.
Here is the link to watch Dateline: Against The Odds. According to Jason and Stacy’s blog, their will be a second Dateline show airing on January 17th (10 pm Pacific, 9 pm Mountain, and 7 pm Central and Eastern).
Hana is doing well! She is teething and still waking for hours at night but otherwise really well! Things are starting to fall into a rhythm.
Hana's Heart 