Today Hana said her name for the first time. Just in case you were wondering how to pronounce “Hana” I will tell you it is not like the name “Hannah”. You say it like “hah-nah” or the town on Maui with the same spelling (Hana, the road to Hana) or you could say it rhymes with Mama. Either way, Hana kept looking at herself in the mirror during her PT/OT session and saying her name. Later in the day, she would sign “name” and say “Hana”. It was very exciting!
The few things to report are that the surgeon came back to the room to re-tie Hana’s new pump since the cannulas seemed to have some torque in them and the pump was not lying flat. Then Hana’s latest bloodwork showed that her liver enzyme tests were continuing to trend down since stopping the Zantac.
It continues to be a little difficult to get out of the room as much as I’d like. Hana only gets outside maybe once a day for 15 minutes. I find myself frustrated more than ever. I’ve been feeling a bit impatient and some small things are getting to me a bit. I’m tired of random people barging into the room, especially without knocking and especially when I am pumping. I am tired of personal belongings being thrown away. I get frustrated when Hana is clearly sleeping and the sign on the door says so yet people insist on coming in and speaking at a normal volume. I get upset when the housekeeping folks do not change their gloves in between patient rooms. Then they touch biohazard trash and move our personal belongings with their contaminated gloves. I think mostly I am just weary of not having much privacy or personal space. I think people forget that their workplace is my home. Sometimes I just need to vent and then figure out a way to make things better. We’ve been told that people start to get a little crazy after the 4-month mark of life in the hospital, it seems we are trending in this direction!
I am sad to report that another young child from the CVICU has passed away. Tonight I learned that Jacob, who had hypoplastic left heart syndrome and then a heart transplant and then a host of other complicated medical issues, passed away on March 12. He was just shy of being 14-months old and had spent his entire life except maybe eight weeks in the hospital. It is very hard to hear this type of news.
People have asked how they can help. Right now, what is very helpful is prepared food. We are weary of the cafeteria food and Trader Joe’s frozen meals. We only have a microwave. The other helpful thing is for visits with younger or youngish kids. This is for Hana who has been really, really loving seeing other kids! Everyone just needs to be healthy and willing to use hand sanitizer.
We have some fun things for the blog coming up soon, so stay tuned!
Thank you again for all the support!
131 days in the hospital, 113 days post-Berlin heart, 105 days on the transplant list.
Hana's Heart 
Thank you for the update. Hana! Love that name. Praying for a heart for her.
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Love and prayers dear Hana🙌🏻you are beautiful ♥️♥️🙏🏻
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SO fun when a little one both recognized themselves in the mirror and when they can say their own name. Very cute and sweet. And I appreciate the pronunciation clarification too! It would be very wearying to be in a hospital all the time as your home. Your positive attitude has been so amazing. I hope you keep getting little gems, like Hana saying her own name, daily so that you can have some great news along with the difficult and mundane. May your sweet little baby girl stay tough and strong and able to get her heart in a timely manner. Much love, Mandy
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How GREAT that Hana said her name. What a milestone for her and for you!
I hope that you can figure out a way to get out of the room for more than 15 minutes per day. That would be hard on anyone, let alone a mom with a child who needs constant oversight.
Wondering if there is someone from ChildLife Services who could help. I worked at UCSF through the SF school district an a home/hospital teacher. My students were older than Hana (they needed to be 2 years, 9 months to receive an IEP (Individual Education Plan).
But the staff on the pediatric ward included people from the Child Life service. Maybe you could check that out at Stanford. Hope that today goes well for you and your family. KB
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What a special day and joyful sound to everyone that Hana said her name. I have been on the road to Hana and it is beautiful, like little miss Hana. Is that chewable food I see going into Hana’s mouth. Another miracle I may have missed. You do deserve your privacy and some peace for sleeping Hana with no intruders except for NECESSARY doctors and nurses and hospital staff. I hope there is someone you can talk to about that, including the most special doctor you have. He or she should be able to spread the word and make it stick. Just my opinion. Thank you for sharing this wonderful news and pictures. Hang in there.
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Hello Kathleen,
I am Siobhan Richards Mum and I live in the south of England. I have been reading your blog
and you are truly an inspiration to any parent with a child in hospital. I am praying for Hana and her family and think of you all. Hana is a gorgeous little girl and the photos are lovely. Siobhan keeps me up to date with her progress.
I hope you have some good news soon.
God Bless and love – Jacky Corley
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Dear Kathleen, love your name and your daughter’s. It pulls at your soul to hear their little voice say their own name doesn’t it? I read your most recent blog out loud to my husband. We stood there with tears on our eyelashes remembering our journey with our daughter. She had a heart repair 20 years ago but I remember those days like you describe them. We took our journey with another family and their baby girl…the same age as ours. Asking nurses to leave because they hadn’t changed gloves or garments. Them touching our things and contaminating them. Trying to get the babies a few hours of uninterrupted sleep. We would plant their dads in a recliner inside the door to their room and despite doctors orders the staff would tumble in over the men trying to get to the babies. Watching parents experience the pain of letting their little one go. My heart goes out to you. You have been in the hospital much longer than we were. You are so strong and brave. I pray for many blessings for you and your precious family. Love and prayers, Anne
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