ABO Incompatibility

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).

Below is another beautiful image from Anne Daiva.

Photo Credit: Anne Daiva Photography
Photo Credit: Anne Daiva Photography

Here are some more images of Hana (that I took…)

For some reason she loved wearing the gloves.


160 days in the hospital, 142 days post-Berlin heart, 134 days on the transplant list.

Summer Scamper

April 18, 2016

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.

Failure Recovery 

Today we recover from failure, the failure to stay positive. I realize that “failure” is a bit extreme, but as Paul and I discussed it important to try to teach your child not just to succeed but to be able to recover from failure. Certainly life is going to have its ups and downs but adding to the negativity not only can hurt others but it hurts ourselves as well. I don’t know the internal workings of why some nurses don’t feel they can handle an emergency 50 feet further from the front door. I’m guessing it is not at all a matter of skill or competency, they certainly seem to have that, but it is a matter of personality and one thing I’ve been surprised to learn is how much personality plays a part in medicine. One thing I do know is I can stop complaining and try to be part of a solution or at least change my attitude.

Today I tried a couple different apps on my iPhone that tracks your whereabouts and gives you an emergency call option. So far, I haven’t found something that I feel works in our situation but I’ll keep looking. Unfortunately, I don’t really believe that offering a solution of a sure fire emergency response is going to make a difference, but I’ll try anyway. 

Today we got some good news! Hana is allowed to go to the adult side of the Stanford hospital to see the live music performances they have on Wednesdays and Fridays! We have been waiting for respiratory season to be over. For the first one she will be accompanied by the nurse practitioner but she should be allowed to go with her nurse as well. I’m sure the same nurses who are not comfortable taking Hana outside will not be comfortable taking her to the music performances either. So, we’ll see how it goes. The first performance is music of Italy. I’m not sure if this style would be Hana’s first choice, but we will see how it goes! We are very excited.


The Difference 50 Feet Can Make

Where do I start? Hana’s had a GREAT week. Eight kids came to visit her on six different occasions, so it may be her best week yet! There is nothing like having kids visit. She is elated by the outside company! My mom got here on Monday night so that has made things easier and we are able to do more fun things. Hana only had one blood draw and her usual dressing change and that was it for unpleasant procedures! 

On the other hand, a storm is brewing that is unraveling me. There has been talk about decreasing the distance Hana is allowed to go outside. As it is now, she goes about 100 feet from the front door. Unfortunately, the nurse’s phones have spotty reception, so they won’t allow her to go that far. This also means that she would not be allowed to go to the water fountain in the atrium because the reception there is also spotty.

Hana only gets to be outside 20-30 minutes a day and sometimes she doesn’t get to go at all. That’s not much, if you ask me (and that’s all with a mask on so forget about breathing in fresh air). Now, depending on the nurse she has, she may not get to go see squirrels, insects, plants, rocks, grass and the world that exists in front of the hospital. She may not get to play in the water fountain. Just writing this makes me so angry I want to scream. I guess the modern technology of a cell phone is not sufficient to make a phone call in the event of an emergency. I have all the emergency numbers programmed and on speed dial on my phone, but, alas, that is simply not a reliable enough way to do things according to some nurses. Instead we must depend on phones from the last century that have spotty all over the hospital. That sounds much safer, don’t you think? You must sense my bitterness by now.

Before I go any further I must stop to say that the nurses have good hearts. They really do. But I am at the mercy of their short sightedness, even with loving and generous hearts, and it infuriates me. I want Hana to be safe and if being safe means being able to make a reliable phone call than let’s figure out how to do it rather than stifle a young life who already has to live under incredibly strict confines and limitations. It’s ridiculous. 50 feet makes a BIG difference.

Yesterday I finally got out for a jog before I started screaming and afterwards I sat out on a bench in front of the hospital and cried. We are getting weary. There is no privacy, no control, very little freedom. Hana is VERY stable. I don’t get to feed her when I want. I’m not allowed to get my own breast milk from the refrigerator to give to her when I want. I have to wait on someone else to bring her meds. I have to ask if someone can take us outside. All of these things I controlled at home. Now, it’s maddening. It makes me wonder if this is how older people feel as they have their independence taken from them. Yes, it’s for a good reason, I suppose, but it’s a pretty terrible feeling, like life is slowly being squeezed out of you.

For all my complaining, we are still grateful. In many countries they would never put someone on a Berlin Heart maybe because it simply costs too much money just to save one life. But here we are, trying to do our best and not lose our minds. Monday will mark five months since we took Hana to the ER with a collapsed lung that started this hospital adventure. It could very likely be five MORE months before we are released into the wild (the Ronald McDonald House here in Palo Alto). Thinking like that depresses me, so I try not to let my mind go there!

150 days in the hospital, 132 days post-Berlin Heart, 124 days on the transplant list.

Warm Up Call

Tonight, Paul and I were getting ready to leave the hospital to spend an evening at home. The nurse and the cardiology fellow came in the room to check if Hana’s feed had started (I set it up but forgot to start it!). I started shaking because I suspected what might be coming. They had a potential donor heart for Hana but were still evaluating the donor’s antibodies and Hana’s to see if it was a match.

In these situations they likely would not tell us, they don’t want to get our hopes up until they know for sure, but in this case they wanted us to stay and not head home. It was a long 45 minutes. Judy, who was staying with Hana for the night, was there too. Hana kept signing for milk, which she couldn’t have. I kept thinking and wondering and planning and keeping my emotions in check. There was a lot of emotions but we didn’t want to get too excited. One cardiologist told me that there is typically a few “warm up”calls before the one comes in that is a match for the patient.

After 45 minutes or so we talked to the heart transplant fellow and he told us that the donor was not a match for Hana, they declined the offer. Of course, we were a little disappointed but we also know that the right heart will come some days.

Either way, some family facing immense grief has decided to give the gift of life. Some child will get that heart and for all of this I am very grateful. It makes waiting easier, when you have hope!

143 days in the hospital, 124 days post-Berlin Heart, 116 days on the transplant list. To 

Donate Life

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!

Closeup of Hana





136 days in the hospital, 118 days post-Berlin Heart, 110 days on the transplant list.