Pump Change

For the last week the team of nurses, nurse practitioners and doctors have been more closely following the deposits in Hana’s pump. I realize using the word “pump” is a little confusing especially since it is both a verb and a noun. The Berlin Heart is both the Ikus (air compressor and computer) and the external “chamber” of the heart through which you can physically see blood moving. It is the latter part, the chamber, where deposits collect and clots may form. They decided that an “area of deposits” had caused enough discussion that it was time to change out the pump (chamber).

If a large deposit or clot were to break off from the walls or valves of the pump chamber than that could cause Hana to have a stroke. This is obviously very serious. Usually by now they have already changed out the pump but somehow Hana made it 110 days with the original pump that was implanted.

When Hana’s surgeon was done with his transplant surgery he came up to the floor where we were getting ready. We had moved a bunch of stuff out of the room to make room for carts and equipment. They had certain drugs and blood on hand downstairs in the CVICU in case we needed to go down there. We moved the position of the crib and they set up a sterile field next to it.

Hana had to have her arms and legs tied down with restraints. I put on the iPad and let her watch Rachel And The Trerschoolers. Everything was set up. The surgeon scrubbed down the cannulas with betadine. They unhooked her from the Ikus and hand pumped. Then the surgeon cut ties holding the pump on and clamped the cannula. He put the new pump on, which was filled with saline, and the OR person (surgical nurse, I’m guessing) put the new ties on while Hana’s bedside nurse hand pumped. The actual procedure time was only a couple of minutes.

Hana did lose the 15mL of blood that was in the old pump. Some of it did flow out and over the sterile cloth and onto her diaper and legs. I requested to have the pump when they are done with it (they examine the deposits). I think it will be great for Hana to be able to have it some day.

Hana did great during the whole thing. There was one point where she squirmed, when the surgeon had blocked her view of the iPad! She just seemed so relaxed! It was really interesting to watch the surgeon at work since this is the only scenario in which I would have that opportunity. He was great. Serious, down to business, very clear on who is doing what. He is quick and moves on. He seems very busy and does not linger. It seems really nice that we do not have to go to the OR for the procedure. We don’t even have to go to the CVICU.

Everything went well. They monitored Hana for 30 minutes after the procedure. Then we hung out, had some lunch and then a nap. In the afternoon Hana and I had some visitors which included some older boys but they were really great with her and she loved their company!

Overall, it was a good day!


128 days in the hospital, 110 days post-Berlin heart, 102 days on the transplant list.

19-months Old

Today Hana turned 19-months old. It is also the 4-month mark of Hana being in the hospital. It seems like a lot longer than that. Below is the sign Hana and I made for the door to her room. We are really hoping that her nurse, Marisa, gets some special recognition for doing such an amazing job of handling the situation when Hana’s Ikus stopped. I think everyone deserves some kind of recognition because there were many others that also responded so quickly, it was really a great team effort.image

Our restrictions with plugging in the Ikus have been mostly lifted. We still have to keep the Ikus plugged into the wall while Hana is in her room. This does limit our mobility in the room but we are working with it. Other than that we are just trying to get out of the room for twenty minutes at a time so that we wear down the battery each time.

I took the plugging into the wall situation very hard. Sometimes all of this hospital living can wear on you. Actually, having a child with a long term medical condition can wear on you. I deal with it by having a positive outlook and really trying to shield myself from negativity but it is a fine line. This latest thing just pushed me over the line, but I just remember that really, we are extremely grateful. Hana is being cared for by an amazing team of people in an amazing hospital. She has a very serious heart condition that has treatment options, even though transplant is not really a cure (it is swapping one heart condition for another). Not everyone has options. So we are very, very grateful.


I know I complained a little about her nurse the other day and I feel bad about that. The nurse is a very kind and caring person who is dedicated to giving Hana the best care she can. She is very attentive. She is a really nice person. I just was not thrilled about how she reacted to the light on the Ikus being a little slow to go off. But we are grateful to have so many great nurses.

This afternoon we got to take Hana outside twice. The first time we went to the atrium and took some pictures of Hana without her mask on (just for a few minutes). Today we also changed out her NG tube so she got several hours break from the tube and we got to take some tube free pictures too! She really loved smelling the flowers! She scrunched up her nose when she was working on smelling them! She loved inspecting the small flowers.

Later in the afternoon we were able to take her out to the grassy area in the front of the hospital. Hana was thrilled to see some new sights. There were some big birds (ravens) and squirrels. She also got to feel some grass! It was very exciting for her.

Thank you for all of your support!







Long eyelashes!


122 days in the hospital, 103 days post-Berlin Heart, 95 days on the transplant list.


Another Freedom Gone

I have a bitter taste in my mouth, so my tone may reflect that. Tonight they took another freedom away – now Hana’s Ikus must stay plugged into the wall, rather than the extension cord. One time, when we plugged the Ikus back in to the extension cord, it took three or four minutes for the red light that indicates no warnings to go off. Somehow, I feel like it has gotten carried away. I don’t know how the message got relayed but I felt like our nurse was not really getting what I was saying and was kind of adding more to what was going on (or not going on). I hate complaining about nurses but I’m just so annoyed and irritated with myself for saying anything at all.

Hopefully this is not a permanent change but it has already been harder. We are definitely not getting out of the room as much and I can tell it is wearing on Hana.

Hana did have a great play date today when two kids from the neighborhood came down to visit and Hana was VERY excited and happy.

In medical news, Hana was taken off of the drug Zantac altogether because the pharmacist felt like it was the only way to really see if this drug is what is causing Hana’s elevated liver enzymes. I don’t even know if the Zantac was really working. The exciting news of the day is that the IVIG therapy seems to be working. The very basic report I heard was that of the ten antibodies that were high, six of them have come down. I don’t know much more than that but it is good news!


Happy St. Patrick’s Day!

120 days in the hospital, 101 days post-Berlin Heart, 93 days on the transplant list.

Problems With Pink


First, I want to start off by saying that we have been enjoying the novelty of Hana’s new pink Ikus (the air compressor part of her Berin Heart unit). In pink fashion, a college friend of mine is doing a fundraiser for Hana through Pink Zebra products. The fundraiser ends March 7th. Now, I am TERRIBLE (shy) at promoting things like this but Laurie has put in a lot of really great effort and we really appreciate it! The  products look amazing and I was kind of wishing to get some for myself!

In other pink news, the so far unnamed pink ikus has been a little problematic. It alarms a lot more that Hana has “kinked” the tube from the the pump. I’ve been told that this will happen when you switch out the ikus and it will adjust as time goes on. But the more worrisome problems are the alarm about measurement discrepancy (not to be worried about but mildly annoying) and the discharging battery alarm. The latter is a very serious alarm. The Berlin Heart battery is guaranteed to last 30 minutes (and it takes six hours to charge!) and it gives you a warning when you’ve used the battery for ten minutes and then again at 20 minutes. When you get to 30 minutes it alarms that the battery is discharging. Or, so I’ve been told because we have never taken the risk to wait and find out. So, we’ve been quite surprised to get this alarm after using the battery for only ten minutes. The first time it happened we were outside with the nurse and we had to run in to the nearest outlet to plug in. It’s considered a very urgent situation. Well, we were told (by Berlin Heart) it was okay and we were able to go back to Hana’s room but now it’s happened two more times and we end up running back to the room and plugging in. Today they sent the logs from the computer to the company. Today the cardiologist, one of the leading experts on this device, told me that I should rest assured that even if the pump stopped working Hana’s heart would do fine pumping on her own until they could get her hooked up to the backup Ikus. Besides the emergency hand pump is there too. I’d really like to keep the pink Ikus so I hope they can figure out what is going on.

My sister has been here since Wednesday morning and we’ve had a lot of fun. She leaves Monday night. It was great to have company here during Hana’s IVIG therapy since Hana couldn’t leave her room for 24 hours. I’m sad she has to leave. She did get to witness Hana’s explosion of new signs and words. She has a new favorite each day. My personal favorite was “rainbow” which she usually shortens to “bow”.

Thank you for all the love and support we are so grateful! I never get tired of saying this and we truly feel very lucky every day.




109 days in the hospital, 90 days post-Berlin Heart, 82 days on the transplant list.

A Sweet Loss

Hana continues to do really well. We are amazed and incredibly grateful everyday. She has a new sign to add to her vocabulary almost every day. She is getting sturdier and faster on her feet. She is getting better at independent play. Her drinking of breast milk has plateaued and so I have cut down on pumping once again, since there is no reason to be freezing more breast milk. We have enough to get Hana through sickness, if she were to get sick again like she was last October.

I ask myself how much longer I will pump and there seems to be much debate in this country on how long it is appropriate for kids to get breast milk. The World Health Organization says two years but I don’t know about six more months of exclusive pumping. But, until Hana will reliably drink something else, I guess I’ll keep pumping. She is starting to get interested in cow milk.

This week Hana will get IVIG therapy again. Let’s please hope it works! We heard more about the other options to lower her antibodies and they aren’t desirable. They involve plasmapheresis and medications used to treat cancer (although in a much smaller dose). Hana would have to go down to the pediatric ICU during treatment. She would have to get a central line.

Tonight, though, what is heavy on our minds and hearts is the news of another child, sweet Charlotte, who passed away on Sunday. We met her parents when Hana was in the CVICU. Charlotte was our next door neighbor here on 3 West. She was her parents only child and she was a couple months older than Hana. She was a sweet baby girl. I don’t know what else to say, but my heart is aching.

Thank you to everyone for all your support.


104 days in the hospital, 85 days post-Berlin Heart, 77 days on the transplant list.

Pretty In Pink

Hana is doing great! She turned 18-months a few days ago. Right now she is really into playing with balls and cars. She also likes opening and closing anything and velcro. Our friends got her a slide and she loves it! I also surprised her with a tricycle, which she also loves. I think she is still making up for lost time when she was in the CVICU and laying in bed, sedated for five weeks.


Hana is sleeping better at night, especially since she is getting bolus feeds instead of continuous feeds. She is only getting her vitals spot checked a few times in the night and every four hours during the day. They do check her Berlin Heart pump for clots and deposits every four hours. She is also only getting weighed three times a week. Unfortunately, she is starting to get bored with the hospital preschool, which is not really geared toward regularly attending, long term stay kids. More unfortunately, Hana’s IVIG therapy does not seem to be working quite as they had hoped. This is the therapy that suppresses her antibodies so that she can accept a wider range of donor hearts. The therapy is suppressing the targeted antibodies but it is making others skyrocket. They will try one more round before considering other options. Maybe it means we will have to wait longer, I don’t know, you never really know.

We have received some really great activities for Hana – learning and sensory things. She is really into learning words and it is amazing to watch the joy of learning unfold right before your eyes. I think what Hana likes best right now is walking. So, we’ve been doing a lot more of that. I push the Berlin Heart Ikus around the third floor following her (chasing her sometimes) and keeping her from going past her six foot drive line. She is not that fast yet but she is still unsteady and falling is not a good idea with all the blood thinners Hana is on (sometimes she bleeds for a whole day just after getting an injection). I’m thinking of getting her one of those toddler leashes just to keep her safe so she does not pull on her drive line, which could be dangerous, but I’m not wild about the idea.

The Berlin Heart Ikus is not the easiest thing in the world to push. (The Ikus is the box on wheels that contains the air compressor and on top of it sits the laptop computer that runs everything.) First, it weighs 200 pounds. Second, the wheels do not turn very easily at all. Third, the long electrical cord (which I am very glad to have because it lets us move away from an outlet) is always getting in the way of the wheels (this is more of a problem in a small space or when Hana goes back and forth, rather than continuing on straight ahead). Someone said that pushing the Berlin Heart Ikus is like pushing the refrigerator. So, if you are going to push a refrigerator through the hospital day after day, you might as well do it in style.

Yesterday, Hana got a new Ikus. Now, she needed a new one anyway because her original one was due for routine service. But this is the surprise that Hana’s nurse practitioner, who specializes in these devices, has been working on. Hana did not get just another boring blue and gray Berlin Heart Ikus. She got a pink Ikus. A hot pink, Barbie pink, candy pink so sweet it will give you a stomachache. It’s actually very exciting and many people have come by to look at it, which has been kind of nice. I’ve heard there are only two pink Ikus’ in the world. Now we just need a name for this hot pink beauty. Any suggestions?




On another note, a few friends are doing various heart fundraisers.

Two fundraisers are children who are doing jump rope events for the American Heart Association. They are jumping in honor of Hana! You can visit Carter’s site:
Carter EarleyIf I get Michael’s site, I will share it!

Another fundraiser is local to Santa Cruz and is for the Children’s Cardiomyopathy Foundation, (Hana has dilated cardiomyopathy) in honor of their daughter, Maya, who is a few months younger than Hana and also has dilated cardiomyopathy. Hana and Maya are heart buddies and unfortunately they got to spend some time in the hospital together (although we knew them before their hospital stay). If you are in or around Santa Cruz, there will be a bake sale at Shoppers Corner, 622 Soquel Ave, Santa Cruz from 10am to 1pm on Sunday, February 28th.

The last fundraiser is for Hana’s Heart. It is being run by a college friend of mine. We are very humbled and honored by all the support and help. It warms our hearts. Here is more about it:

Pink Zebra Fundraiser

Day 98 in the hospital, Day 79 post-Berlin Heart, 71 days on the transplant list.

What We Are Waiting For

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.



High Stakes Caretaking

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

An Amazing Story

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.


Filling And Emptying

Today was a great day, in that Hana was able to get out of the room quite a bit. Last night Hana was awake from midnight to 4am, so I was also awake from midnight to 4am. We decided that she is getting her days and nights confused so we had to work hard to get her up and keep her up! She has her PT/OT, then pre-school then blood work which they were fortunately able to draw from her IV, then a nap. After her nap her nurse was able to go with us for an hour and we took Hana to the outside garden and fountain and then back to the model trains. Hana was even motivated to do quite a bit of standing! I haven’t seen her that happy since we got to the hospital! Later in the day she took some nibbles of cheese puff, grilled cheese and mashed potato. She took a couple of tiny sips of milk.

It was a bit difficult today (other than being tired) because Hana vomited five times. More than half those times was right after she got her medication, persantine. Now they are a bit worried that her Berlin Heart is not filling completely filling with blood for each “beat”. More important is that it is emptying each time and hers is doing that. The incomplete filling could be due to being dehydrated from throwing up so much. They are also watching more carefully the pinpoint, white “clots” in the Berlin Heart. These have gotten more frequent in the last day or so and if they suddenly get big or disappear then it could mean a potential stroke for Hana.

But overall, she is still doing great!