Two Months

Two months ago today Hana’s chest was closed up after getting her new heart and we saw her wheeled out of the OR elevator into the CVICU. Just thinking about that moment is overwhelming with emotions – relief, joy, fear, grief and some emotions I don’t have names for. I think of the family of the donor and I like to picture a little spark of life from their child beating inside Hana. Maybe that picture can bring them some comfort or instead knowing that we honor their child every day by living life fully and with gratitude.

There’s some unfinished business I’d like to tidy up before continuing. I was reminded when I saw that today’s “Feel Good Friday” blog post from the hospital is an update on how Hana is doing post-transplant. You can read the story here:

http://healthier.stanfordchildrens.org/en/hanas-happy-with-her-new-heart/

I want to share two things of unfinished business. The first one is about one of Hana’s nurses. One of Hana’s nurses, Marisa, is the nurse who responded so amazingly the day Hana’s Berlin Heart stopped working. I wrote about it in the post “Emergency“. Well, because of her amazing response (and also the other nurses who responded were amazing in their own right) Marisa was awarded the Daisy Award, which is an award thanking extraordinary nurses. I was so proud when she got the award, even though I did nothing, but I was very proud of Marisa and grateful for having such an excellent team supporting us. She won the award back in May and it was the special news that I mentioned in the post “Climbing” but I was waiting to share it and then Hana’s transplant happened and I forgot! Here is a picture of the sign Hana and I made to hang on her hospital room door after Marisa won the award.

Hana-iPhone-1688_web

My other order of business is that I wanted to share some more of the beautiful images taken by photographer Anne Daiva, while Hana was still in the hospital and on the Berlin Heart. We just recently got to see them. They really remind us where we’ve been, how far we’ve come and how grateful we are. Life is so good.

adphoto-hanas-heart-11_web
Photo Credit: Anne Daiva Photography
adphoto-hanas-heart-26_web
Photo Credit: Anne Daiva Photography
adphoto-hanas-heart-28_web
Photo Credit: Anne Daiva Photography
adphoto-hanas-heart-29_web
Photo Credit: Anne Daiva Photography
adphoto-hanas-heart-34_web
Photo Credit: Anne Daiva Photography
adphoto-hanas-heart-47_web
Photo Credit: Anne Daiva Photography
adphoto-hanas-heart-61_web
Photo Credit: Anne Daiva Photography
adphoto-hanas-heart-84_web
Photo Credit: Anne Daiva Photography
adphoto-hanas-heart-110_web
Photo Credit: Anne Daiva Photography
adphoto-hanas-heart-151_web
Photo Credit: Anne Daiva Photography
adphoto-hanas-heart-183_web
Photo Credit: Anne Daiva Photography
adphoto-hanas-heart-171_web
Photo Credit: Anne Daiva Photography
adphoto-hanas-heart-123_web
Photo Credit: Anne Daiva Photography
In current news, Hana had a great week. We spent the day at home on Tuesday and got a lot of things organized and cleaned. Several women in the neighborhood came over and got to work. I love my neighborhood and my neighbors! There’s still a lot to do but it might have to wait until the painters are done painting the house. Hana seemed to love being home and drank more milk than I’ve ever seen her do. On Wednesday I took her to a public wading pool (we went early and left when it started to get a little crowded). She loved it! She was smiling and laughing and splashing! On Thursday she had her feeding appointment and in the evening she got to go swimming again! Thank you Stacy! We had a great time.


Still, when I hear stories of other kids that don’t do so well I get very scared. It continues to be a bit of a recalibration every time, every day. Heart transplant is not a cure. Things are going well today, I celebrate that. I focus on what is going on now. I suppose it will be something constant that I will need to remind myself of, but, not only does it stop my fear from blooming out of control, but, what I am left with is how grateful I am for what I have today.

Lastly, Hana had her clinic visit today. They did not give us a date when we could move home. They want her Prograf levels to be consistent before they let us go. I think that is reasonable. They did seem to think that two weeks would get us there. They also said that Hana could go to music class when we get back home and that she could attend birthday parties! I was pretty excited to hear that. Maybe we will even have a birthday party for her! It is coming up very soon!

Thank you everyone, for all that you’ve done.

 

 

A Heart For Hana

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!

Half A Year

It’s been a great week and a half! We’ve hit a lot of milestones too. First, we passed the half a year mark since Hana was first admitted to the hospital (this time around). Hana turned 21-months. I celebrated a birthday too.

Unfortunately, Paul was pretty sick most of last week and kept himself and his germs away and at home. We really missed him a lot but we tried to make the best of it too by doing a lot of activities. It was hard and I had a lot of tension headaches, but Hana and I had a lot of fun. 

Hana is still climbing a lot but now she is better at it and I don’t worry quite as much. She has also climbed most things in the room and has moved on to identifying letters and numbers (no, this does not mean she is a genius, she’s just watched a lot of YouTube cartoons!)

Watching our dog Poppy in the PoppOlympics

We continue to go to the music concerts on the adult side of the hospital. Hana loved dancing to the Latin jazz!

​​
We had a very special treat in that Poppy came for a short visit. Hana had the delight of feeding her treats!

The whole family together!

A few hours free of her NG tube!

Preparing for her dressing change.

Living on the edge!

We are trying to get better at habitual hand washing but Hana turned it into a bath!

​​
Below is Hana saying some letters and numbers.


This is what happens (many times a day) when Hana kinks her Berlin Heart pump.


Going to check out the hospital prom decorations
Trying to scale the side of her crib!
Watching Jeff, the guitarist, at preschool
This is what Hana’s bathtime looks like

This week Hana’s been throwing up more. I hope she is not getting sick! We are grateful that she has been doing so well. Not everyone is as fortunate and it makes our hearts ache for them. In a lot of ways things are easier here than at home – I don’t have to get up to start feeds in the middle of the night, turn off feeds, give late night meds, wash as many bottles, I don’t wash syringes or draw up meds, I don’t fortify milk or mix formula, there’s no running to the pharmacy or lots of appointments, I don’t order medical supplies, I don’t have to do laundry other than our clothes, I can’t cook dinner or walk Poppy. Ok, the last two I wish were different. Another thing, there is always someone around to help when you need an extra set of hands! We are grateful!
188 days in the hospital, 170 days post-Berlin Heart, 162 days on the transplant list.

Climbing

This post is long overdue. I’ve been wanting to post about something really special that happened last week, but I’m waiting on something, so I’ll just leave you in anticipation. In the meantime, I thought I’d better send out an update.

It’s been a busy couple of weeks. My sister and brother-in-law were here the first week of May and we had a really great visit, which included the excitement of the News Media Event. I’ll post more links as they become available. We’ve gotten some nice feedback so I’m really glad we decided to do it and I really hope it helps raise awareness on the importance of organ donation.

Hana also had another IVIG treatment on Monday and Tuesday of their visit. They had to poke her four times to get their blood draw and to get the IV started. It was awful and I hated seeing the fear in Hana’s eyes, it really hit me hard this time around. They ended up putting the IV in her foot and then another, better IV in the other foot. So, Hana was not able to walk or stand for 24 hours, or even leave the room which was HARD. Thankfully, their were three adults, full-time, to keep her occupied!
Hana-1418_web

Hana-1423_web
Getting silly during IVIG

We already got the results of her IVIG therapy and she dropped another antibody (If I’m even saying that correctly). So now she is down to 2, which I guess mathematically means she would not be able to accept an organ from 22% of the population because of her antibodies.

Weekends here are generally slow and boring. The nurses are staffed short so they are usually a little too busy to take Hana outside, maybe she can go out once a day. Strangely, we get most of our visitors during the week too so it makes for long days on Saturday and Sunday. It is nice to get visitors to break that up! Sunday (Mother’s Day, we will double celebrate next year when Hana is not in the hospital) and Monday felt like really, really long days. Then on Tuesday we started to get visitors all the way through Saturday.

Hana-iPhone-1538_web
A little bored!

Thank you to everyone who visits, it really makes a difference!

Hana continues to go to the music concerts on the adult side of the hospital. It has been really great. She has started to squeal with delight when she realizes that we are walking in that direction. Her favorite performer is still Jeff, the guitarist that plays at preschool on Wednesdays. Sometimes we see him at the concerts in the audience and Hana will stare at him like he’s a rock star.

Hana-1446_web
Staring at Jeff the guitarist.

One of Hana’s nurses has taken it upon herself to make cloth wraps with velcro to use over Hana’s abdominal dressing. This is to replace the ace wrap that we’ve been using. We are experimenting with what she’s made so far and she is perfecting her pattern based off of our experiences. I am so grateful and honored that she is taking so much time and energy out of her personal life to do this. They have been working out great! Jenny is amazing!

May 11, 2016
Replacing the Ace Wrap!

The big news of the week (other than the special announcement that will come in another post) is just that Hana has been climbing everything. She is climbing up her crib, on chairs and stools and on top of the table and on the stuffed chair and couches and up the slide. It was inevitable. I’m glad she is climbing but I can’t turn my back on her for a second! Because of all the blood thinners Hana is on it is really dangerous if she fell, not to mention her pump that goes into her heart! But it is really fun to see her go at it, I fully support it as long as we can keep her safe and she doesn’t irritate the cannula insertion site into her chest.

May 9, 2016

Hana-iPhone-1671_web

Hana-iPhone-1664_web

I also learned how to give Hana her Lovenox shot, which is just a subcutaneous injection, so its not a big deal. I want to be able to give it if the nurse is really busy, especially at night and I want to get Hana to bed.

The waiting has been getting to me a little bit. It takes vigilance on my part to continuously adjust my attitude about it. We are stuck here and we are waiting for a heart, but it doesn’t mean we can enjoy every day and every minute, not that I don’t, but I don’t need to be getting down because we’ve been waiting for five months. That’s right! Hana has been on the transplant list for five months, as of today.

Here are a few more pictures of some activity!

Hana-1493_web
Cinco de Mayo celebration

Hana-1488_web

Hana-1463_web
Watching the ants go marching one by one.

Hana-iPhone-1672_webHana-iPhone-1636_web

178 days in the hospital, 160 days post-Berlin Heart, 152 days on the transplant list.

On Local News Tonight

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.

Channel 2 – http://www.ktvu.com

Channel 7 – http://abc7news.com

Our motivation to do this was to raise awareness about the importance of organ donation.

Putting Your Heart On Ice

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).

Hana-4638_web
Custom made window cling!
Hana-iPhone-1378_web
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!”

Hana-iPhone-1368_web
by Eugenia Mancini Horan

To see some of her other work, you can follow her Facebook page, The Art of ima.GINA.tion. Or you can visit her website.

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!

Hana-iPhone-1337_webHana-4925_webHana-4912_webHana-4909_webHana-4893_web

164 Days in the hospital, 146 days post-Berlin Heart, 138 days on the transplant list.

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…)

Hana-4840_web
For some reason she loved wearing the gloves.

Hana-4845_webHana-4849_webHana-4877_web

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