Hana's Heart

It was a year ago tonight that we first arrived at Stanford via life flight. UCSF doesn’t have a pediatric heart transplant program and they felt that Hana was going to need one. They were right, although who could have predicted that we would wait ten months before listing her for transplant. I had never been more exhausted in my life than the night we arrived at Stanford. My body ached, I hadn’t slept, and then the worst part was the critical condition Hana was in. They talked to us about ECMO which is a type of heart and lung bypass life support system.

Hana never did have to go on ECMO but they had to he big sitting outside her room, waiting and ready, just in case. I’ll never forget hearing the words of the attending physician in the CVICU, “I’ll do whatever I can to save your daughter’s life.” Chills. Interestingly enough, when we first saw her again in the CVICU this past November she asked me if I remembered her and I told her, “Remember you? I couldn’t forget you.”

My dad flew in that night, my mom had arrived that morning. The social worker had reserved Paul and me a sleep room. When we finally crashed in the room. I could hear an awful noise that I kept imagining was feet running down the hall for an emergency. I kept looking out the door and down the hallway to see if they were running into Hana’s room, but all was quiet. (The noise was things moving in with he tube system.)

Now we are here. Things are so different but we are here at Stanford on this day again. Today they decided to stop Hana’s Berlin Heart pump while doing an echocardiogram. I was nervous. There were two heart failure cardiologists (including one of the Berlin Heart experts), a heart failure fellow, the VAD nurse practitioner, the echo tech and the bedside nurse. The fellow operated the Berlin Heart hand pump, manually pumping while the tech took her images. Then they stopped hand pumping for three seconds. Then they started hand pumping again and then hooked the drive line back into the ikus. Hana didn’t even seem to notice. They wanted to see how well her heart would function on its own without the help of the pump. I don’t yet know the results.

It was otherwise another good day! Hana even tried some chocolate that we received in a package! We also got the official clearance to move about the third floor without a nurse! We had to sign a contract acknowledging the new rules of this arrangement (in some countries people are going home on the Berlin Heart!) but the new freedom will be nice!

Our surprise that the VAD (ventricular assist device) nurse practitioner has been working on won’t be ready until Tuesday – stay tuned!

86 days in the hospital, 67 days post-Betlin Heart, 59 days on the transplant list.

It was one year ago today that we learned about Hana’s enlarged heart. It has been, without a doubt, the most transformative year of my life. It has touched us in ways I can not describe. We have been so blessed by all the support we have received. It has come from family, friends near and far, friends we haven’t talked to in years or decades and even strangers. It has been truly amazing. I am in awe and I am humbled.

This time last year they (the cardiology intensivist and neonatologist) had just finished hours of work trying to get an arterial line started and they were unsuccessful. They could barely get two IVs. The neonatologist bought us coffee. All night I sat in a chair by Hana’s bed and tried to comfort her as she tossed and turned. I might have dozed off for 30 minutes. We had no idea yet how bad it was.

Its amazing how quickly life can change and in ways that are swift and heavy and shocking and full of fear. The best we can do is ride along with it. I learned that people care, or, they can care, if you show them what to care for. People care about Hana. And they care about Paul and me but they really care about Hana. And how easy she makes it! Somehow she rallies people around her. I am amazed by this. She also handles things with so much courage. With all things unpleasant, I am there to provide comfort for her pain and witness to her fear and suffering and then to help her move on.

We are so grateful. Things are going really well. Being grateful makes me happy. It’s not too hard to be happy here. In honor of the one year anniversary, I registered myself as a bone marrow donor. I’ll do what I can.

Hana is doing really well. She is sleeping better. She is babbling and signing a lot. Her walking gets better every day.

A couple of days ago Hana finally weighed in at or above 9 kilograms. That is about 20 pounds (I only know that because I just used a conversion calculator). She seems to have been stuck at 8.8 kilos for so long that I’m glad she has finally tipped the scale.

Hana’s recent blood work showed that her liver enzymes are a little high, so they will watch that more closely. Also, her hematocrit was low, so they increased her iron again. In addition, they want to avoid giving her another blood transfusion so they may try Epogen therapy. This would be an IV drug that would be used to stimulate the production of red blood cells.

Otherwise, things are going very well. Hana is really starting to walk and talk – I think she has finally surpassed the walking skill level she was at prior to being in the hospital. Just is the last couple of days she started babbling, making new sounds and signing lots of new words. It is very exciting.

Possibly on Friday, but probably on Monday there will be a fun surprise that one of the nurse practitioner’s has been working on.

Stay tuned…

Hana had another IVIG treatment yesterday and today. It went much better than last time. Judy was also here to help so I actually got to go outside. The downside of IVIG therapy is that they don’t really want Hana to leave her room. So she missed preschool and PT/OT.

Hana continues to enjoy her new room. It is so much easier to move around! We cycle through toys and activities. Today we set up a zip line in the room. Hana loved that! (I wish it were my idea but it wasn’t. Thank you Katie.) 

We are all sleeping better. I am still falling asleep when I pump so I don’t get around to writing an update or responding to messages! Pumping is going to end. Hana is switching to pediatric formula (Peptamin junior) through her NG tube but is only drinking straight breast milk by mouth. Eventually she will need to drink something else! She is very interested in food lately and has been doing good experimentation. We still have a long way to go and no one expects her to eat much while on the Berlin heart (all kids tend to lose their appetite and vomit once a day).

  
  
  
  
79 days in the hospital, 60 days post Berlin Heart, 52 days on the transplant list.

Hana slept restlessly again last night. She awoke at 5:15 and finally fell back asleep at 6:45. This means that I was up at least once an hour. I was planning on getting some rest, maybe a nap, when Paul got here. But that didn’t happen either. Instead we were given the option to pack up and move to a bigger room. 
I’ve been eyeing this room for weeks. The nurses keep telling me it’s the “big room” or “the one for the Berlin Heart patients “. Every time I see it empty I wonder if they are going to move us. But they don’t. Until today. It was very slow on 3 West and the nurses who know who to talk to were able to get us moved! Actually I think everyone was pleased to see us go to the big room. Several people helped us pack up and move.
Unfortunately, we have accumulated way too much stuff and some of it junk that no longer has purpose to us. The new room was s wreck! It took me an hour to find my cell phone. Fortunately, our friends Judy and Lou had both decided to visit today so they were able to help unpack. We have most of the stuff put away and a lot of stuff hung up but there is still more decorating to do!

Our new room is great! It is really big (to us). The best thing is that the view from the window is awesome! It overlooks the front of the hospital so when Hana stands in the window she can see cars and people and trees and grass – she can see what the world is up to! This makes her very, very happy! Before, the window faced the cancer center. Best of all, when Lou brought Poppy with her to the hospital, Paul and I took turns going outside to visit with Poppy and we were able to wave to Hana in the window. It was great!

Here are some pictures of our old room – new room pictures will come soon!

 

Hana has not been as happy this week. I’m hoping it is just teething and not that she is bored or an upset stomach so much of the time. She does seem to be sleeping a bit better, overall. Last night she did throw up in the middle of the night, so I don’t know what that is about. Blood work and the dressing change went fairly well this week but Hana complains a lot more than she used to. She is also afraid of every person that walks in the room unless she knows them and they are not here to poke or prod her. It makes me a bit sad to see this but I hope we can teach her to trust people again.

We have been trying to change up the room, get out of the room, invent and do new things. It has been challenging! Hana’s new park is the small atrium in the middle of the hospital. Her new playground is the trains. I hope she doesn’t get too bored of them too quickly. I contemplated purchasing a little slide with steps that folds up but I don’t know where we would put it! It is hard enough to move around in this room as it is!

I’ve been trying to get out more, during Hana’s naps. It is hard! She seems to know when I’m giong to leave and she wakes up very early from her nap! Yesterday I went for a jog and they called me ten minutes after I left to come back. I’ll keep trying, hopefully we can get in a better routine. It’s interesting how life really forces you to deal with your issues too. I definitely have a hang up about never having enough time and asking for help. Now, I have less “time” than I’ve ever had and I’m forced to ask for help!

Yesterday, the man, Jeff, who plays guitar for the last fifteen minutes of pre-school every Wednesday, came by Hana’s room. He played for fifteen minutes. Hana was mesmerized! She clapped and danced a little, but mostly she just watched him transfixed. Somehow she is not that impressed when I play the ukulele. I hope she has more opportunities to see such things!

 

 

It was a month ago, Christmas Eve, that Hana was transferred  to 3 West from the CVICU. She turned 17-months this past week. Things are moving along. The IVIG therapy was relatively uneventful other than a teething, very fussy, very bored 17-month old had to stay still for 24 hours. That’s kind of hard and requires marathon patience. She did throw up a lot. I think our day nurse felt bad for me but it was okay. Part of what made it okay was I knew that on Saturday night we were going home to sleep (and see Poppy). Although the night the IVIG was running I got pretty good sleep and probably only had to get up six times.

Now we are trying to figure out the sleep/vomit thing. Hana’s sleep is often disrupted and she is puking a lot. Now we try to balance fluid volume/calories/meds so she doesn’t vomit and checking vitals/taking her weight/checking the Berlin with letting Hana get sleep.

It was amazing to be at home and see Poppy. It’s always a little sad – like when I see Hana’s raincoat I bought her two days before being admitted to the hospital and knowing she most likely will never get to wear it (at least not outside in the rain).

 
 

 

  

I’m going to keep this short because I’m so tired! Hana is doing really well, despite the fussiness. She has a lot of teeth coming in right now, luckily the molar is mostly poked through the guns, but the rest are coming in slow. Hana is off of Ativan and still weaning methadone. No preschool tomorrow because she will be hooked up to her IVIG treatment. They are running it slower this time. Also she can’t stand this time (I should say not allowed) because her IV is in her foot!

Sh had to be stuck three times! The first IV went bad (infiltrated). So, Hana got stuck three times and had another NG tube get placed today!

Okay that’s all for now because I’m falling asleep while trying to write this!

  
  
  

Hana continues to do well. I’m starting to feel better myself. Right now, Hana seems to be getting three teeth at once and one of them is a molar so there is quite a bit of fussiness. She is only allowed to get Tylenol to help with the teething. Today she also had more bloodwork and hopefully we are getting on a more normal routine although one of her levels came back high so they may have to repeat one test tomorrow. They did decide to test her BNP level, which is a measurement of heart failure (although not a very reliable test in children). Hana’s was 388 which is the lowest it has ever been since we discovered her heart condition.

I would love to get out more, but it has still been difficult to find the time between napping after very poor sleep, eating and pumping. Also, someone really needs to be in the room with Hana all the time so it is hard to ask a nurse, especially when they are busy, but I do otherwise I would never get a chance to run to the kitchen for food!

I am trying to create a really healthy environment for a budding toddler. It is very challenging! There is only so much we can do and only so many places we can go so we have to really get creative to make the most of it. I bought reusable stickers to put on the windows both in our room or to take with us on “walks” to change up the routine. I have bubbles to blow outside and balls to throw in the fountain. I think I’m going to try “scavenger hunts” by putting temporary stickers from our favorite books up on the walls in the unit and going around to identify them. Hana is not doing crafts or coloring yet and she is not allowed to go to the playroom. I am rotating through the toys so that they seem “new”. If you have any ideas, please let me know! She LOVES to watch other kids. She loves to be outside too, but that is limited, especially when it rains.

Today the grandmother of one of the babies that was in the group room in the CVICU with us stopped me. Sometimes she does not make a lot of sense and I’m not sure why. Her daughter doesn’t always make sense to me either. She has been living in the hospital since the end of July when her daughter, Promise, was born with Hypoplastic Left Heart Syndrome. Promise has not been doing too well lately. Today, the grandmother told me that Promise passed away this morning. I was very, very sorry to hear this. I hope I understood her correctly this time because I was a little puzzled as to why she was still at the hospital at 5:30 pm but I have no idea what happens after a child dies in the hospital. I hope sweet Promise can now rest in peace.