Author: katmeander

I got to hold Hana for a long time today – over an hour. It was so wonderful. I closed my eyes and just felt her in my arms and tried to burn it into my memory forever. I think Hana liked it too – she almost fell asleep, but she successfully fought it off. Her eyes kept rolling into the back of her head and she seemed like she really wanted to nurse. She eventually got agitated. Hana was agitated most of the day. Maybe it was more teething, but maybe not. She’s almost back to the way she was before this whole thing started a week and a half ago, but even then something wasn’t quite right, so still, something is not quite right. She kicked on her activity mat (we put it on the bed!). She refused to nap. I saw her heart rate rise and my own heart rate started to rise. I felt more like a “normal” mom, doing normal mom things for her baby. I loved it.

I went for a short jog again today. It struck me that I was doing something not related to our hospital stay. For thirty minutes, I got to be something other than the mother of a hospitalized baby. I also got to leave the hospital for the first time in about 24 hours. Paul and I also went to dinner. We need to. More than ever before. We need to make time once a week to regroup and just be with each other, to check in and make sure we are on the same page. We have to be a team, a good team.

I am trying to prepare myself mentally for the day when I have to sleep in a different building than my baby. The very idea tears me apart. You are definitely not allowed to fall asleep in the ICU rooms here. You are not allowed to sleep in the lobby or waiting area either. So you either have a Sleep Room, like we have, or you have to stay awake all night (they will kick you out if you fall asleep). We won’t have the sleep room forever, well, if things progress, we won’t have it forever. It is just not sustainable to stay up all night either. This is not a sprint, it is a marathon.

They started her on a new drug this evening. It’s supposed to eventually replace the Milrinone, but I don’t remember the name of it. One effect of this drug is it lowers the blood pressure. Hana’s blood pressure was going too low, just after she fell asleep. She looks so peaceful and comfortable, but I want to stay in her room, just in case. But I know that they are on top of it and watching it carefully. I know this. I know that I need to try to get more sleep, more rest. I think I am slowly catching up but it is still hard to get through the day without a lot of coffee. I need rest so I can stay in this marathon.

Today is the first day I did not cry. Sometimes, the enormity of it all would catch me and swell up in me and I could cry, really let out a sob, but I am too tired to go there. I am just too exhausted.

It turned out to be a teething day. I’ve heard some children teethe with no problems, but this was not Hana when her first two teeth came in and it wasn’t her today. On top of that she can’t really get in the comfortable position she wants to be in. We spent all day trying to entertain her with toys, singing, books, whatever worked – until it didn’t. One doctor called it a “puppet show.” I’m pretty exhausted, as I would be with a teething baby. But overall, things were better today (even with a tough morning). I’ll take it!

They stopped the high flow and gave her a regular nasal cannula (I hope I’m saying these things right). They increased her feeds (poor thing was so hungry and trying to suck on everything!). They are continuing to give her Tylenol and Ativan. I got out of the hospital for a short drive to downtown Palo Alto to quickly pick some photos at Walgreens. I taped the pictures up in her room. They make me happy to see them!

Hana woke up early again (3 a.m.). Then she became agitated again. I was worried it was going to be a repeat of yesterday. They gave her some low doses of Ativan. Then they gave her Tylenol. She still seemed very agitated but after two hours she had “calmed” into something more like a teething baby (she has two teeth already). Now she is playing and kicking and fighting off taking a nap.

This morning was stressful, but the plan is to reduce her meds again and reduce the high flow to 4L. I hope today is better than yesterday.

Hana had a good night. They did have to increase her flow from 6 to 8 after taking a look at her chest x-Ray, but they will continue to try and decrease it today. She was wide awake at 6:15 (the nurse told me). Today she’s been downgraded to a new room down the hall (instead of directly in front of the nurses’s station) with a shared nurse. It’s one of the few times that being “downgraded” is a positive sign!

We have so many people to thank and we are so extremely grateful, but the first person I’d like to thank is the pediatrician we saw at Kaiser in San Francisco. Paul, just became an employee at Kaiser a few weeks and we had just been put in the Kaiser system that morning. When I called that morning to make an appointment for Hana’s cough, they scheduled is to see Dr. Herz.

Dr. Katherine Herz saw Hana and ordered her a chest x-Ray. I don’t know if every pediatrician would have ordered a chest x-Ray for a cough. We went down one floor and had the x-Ray. Then we walked the four blocks home. We were home about 30 minutes before Dr. Herz called to tell me they saw an enlarged heart on the x-Ray. She asked us to come back as soon as possible for an echocardiogram. They whisked us into the echo and then the pediatric cardiologist walked us immediately next door to the emergency room to await transport to UCSF hospital. Dr. Herz came to check in us in the ER, which was very nice. She also called us the weekend after we arrived at Stanford. I am so grateful to her for ordering that chest x-Ray, otherwise it could have been awhile before the enlarged heart was discovered and by then, Hana could be in much worse shape. Thank you Dr. Herz!

Here is a picture of Hana a few months ago:

Today we got to hold Hana! There was a pillow underneath her so it wasn’t quite her little body against my own, but it was so, so wonderful!!! Paul held her first. She would stare at us for long stretches. I miss holding my sweet baby.

It’s more than seven hours post-extubation and Hana is still doing well. Her heart rate is still very low, but the heart failure/transplant doctor said she looked great. But still, but still… well I will try to sleep anyway and remind myself to put away fearful thoughts.

She spent a lot of awake time with my parents – hearing stories and being entertained by toys. I hope tomorrow I have more time like that with her. I hope I can figure out how to mother her well, I have no experience to draw from to prepare me for this scenario.

Hana spent several long moments looking at me with sad eyes. This troubled me. I hope she is not feeling that we have failed her by letting strangers poke, prod, twist, stick and drug her. I hope she has not lost her trust that we are here to love and protect her. I hope she is not sad. But maybe all the above are true. I might feel the same if I were her, not understanding because she is so young. Maybe I have a sad baby who does not feel loved and protected by her parents. I will do my best to change this.

Today Hana turned six months old! What a way to do it!

I love this sweet baby.