Author: katmeander

Overall, Hana spent this Valentine’s Day as a day of rest and evaluation. They started her on some of my breastmilk in her feeding tube. She had an arterial line inserted in her right arm, which I believe is mostly used to draw blood from (multiple times a day). They turned off the epinephrine she was getting to help her heart pump. They continue to wean her off of her ventilator.

Tonight they will pull her Femoral Line (now that she has the arterial line) and do some swabs for testing. It seems that the plan is to make her as well as possible (of course) but the road is probably still leading to a heart transplant. The baby in her adjoining room is getting a heart transplant tonight.

Our Little Valentine!

Kathleen

When I have spare moments I try to piece together the sequence of events. I know many people have questions as to how a seemingly healthy baby could so quickly be in the CVICU. My mind also wants to dump information somewhere so that I can start retaining new information.

One piece to dump is the ride to Stanford. I was alarmed when I heard they were transferring Hana via helicopter to Stanford. Maybe it hadn’t dawned on me how serious it really was. I’m starting to get it.

A team from Stanford arrived via helicopter to transport Hana. It took about two hours after their arrival to be ready to transport her. It was hard for me to stay in the room. I felt ready to collapse and I was still reeling. I hadn’t slept in a couple of days. Here are some pictures Lisa took:

It was so hard to see her lying like that. I was fortunate that they allowed me to fly with her to Stanford.

It felt bittersweet to be flying at night in a helicopter over the Bay Area. I felt guilty for enjoying the view, but I also used it as a time to take a break. I did start crying in the helicopter a few times. It was so hard to see Hana in the condition she was in during the transport. I thought I might vomit. The hour after our arrival at Stanford was pretty scary.

This afternoon I took this photo of Hana being sat up by the nurse and my mom.

I hope I can hold her soon.

Yesterday, Hana opened her eyes and was awake (I think I mentioned this before) for a little bit.

Paul and I actually walked to downtown Palo Alto to get some food and some much needed clarity. When we got back we sat with Hana for a while before attempting to get some rest. This is our sleep room, which is right on the unit.

Hana was stable through the night. I thought I heard something about an episode of Tachycardia in the night, but I didn’t ask. Not yet. It feels somewhat cowardly to avoid hearing bad news, but I figured it’s not what is going on in the present moment so I could give myself a break. Today they are giving less oxygen through her breathing tube and are going to back off the medications helping her heart pump. Hopefully she handles those well. Unfortunately she tested positive for a respiratory virus so we have to wear gowns, masks and gloves in her room, not to mention that it is one more thing her body has to work on.

This morning I sat with her for several hours. She woke from time to time.

I love that sweet face!

Hello All,
I know so many of you are thinking of Hana. We appreciate it so much!

After a long night and a grim day at the new UCSF hospital, Hana was taken by helicopter to Stanford Medical Center’s Lucile Packard’s Children’s Hospital last night. They were prepared for our arrival with a machine they could surgically install to bypass her lungs and heart. Fortunately, she started to do better and they didn’t need to do this.

In the morning she was doing much better and they decided to start reducing some medications to see how she handled it. The first medication they took her off of was the one that was keeping her paralyzed. Meanwhile, Paul and I and often both my parents, talked to a dozen doctor’s, a social worker who handles pediatric transplant cases, the pediatric heart transplant coordinator, some child life psychiatrists, and the VAD coordinator (in case they need to give her a heart pump until she gets a heart donor).

She woke and opened her eyes!!! We talked to her and I read her a story. Then she had to get a PICC line inserted, so we decided to go to the Stanford Shopping Center to buy clothes (I’ve been wearing the same clothes for three days).

She is such an amazing, sweet trooper! Thanks for all your thoughts and well wishes and prayers and help! I can’t believe how amazing people have been.

More to come.