Hana was up at 5:30 a.m. All that sleep training is down the drain! It’s nice to actually think about things like that again. Other than awakening too early, Hana is having the best morning yet. I even got her to smile! It’s the first smile since all this started almost two weeks ago, in February 11th. I am still feeling cautious. Things changed so quickly then, it could happen again. I don’t want to forget to just be in the present moment.
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.
My dad left last night. I can’t imagine a more difficult goodbye. My mom is still here almost two more weeks. I don’t know what we would’ve done without them.
It took Hana a long time to get to sleep last night, it was midnight before we got to bed. She was still sleeping when I got up at 6:30 this morning. When she did awake around 8am, she was agitated and wanted to sit up. She was obviously still tired. It took a long time to get her to take a nap (which lasted less than an hour). I am so tired. We all are.
Hana seems like a teething, overtired, bored baby agitated by all the restrictions of tubes and wires attached to her. Today they will continue to wean her oxygen flow (she is on 2L). They will try weaning (I don’t know if they actually wean or just stop) her Heparin and start her on aspirin. They still need to get her diuretics right before weaning her down on the Milrinone (I suppose they need her electrolytes better balanced before messing with heart medication). She is getting 40mL of breastmilk an hour, which they will start fortifying tomorrow (for more calories without the volume). They talked about doing another echocardiogram. She has a standing order for Ativan is she can’t get settled. They are giving her Tylenol every six hours.
I heard the heart failure/transplant doctor say that 60-70% of dilated cardiomyopathy cases like Hana need a heart transplant within four months. Some percentage of those will need a heart transplant later in life.
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.
Today Hana has been very agitated. She has been awake since 6:15 without a nap. She has the shakes and is inconsolable. They believe it is from drug withdrawal from the morphine and Versed. Someone needs to constantly be with her to entertain, distract, console her and she is still crying (a strange cry/whimper like I’ve never heard from her before), kicking her legs and arching her back. We take shifts being with her. I’ve probably spent the least amount of time in her room. Between pumping breastmilk, trying to eat, drink water and go to the bathroom, there seems to be a shortage of time. Then I feel guilty. I am not doing a good job at taking care of myself. I am exhausted and copious amounts of coffee are only doing so much (and keeping me up too late). Thank goodness for my parents and Paul, who is so devoted.
They have her Ativan. Then more Ativan. Then they gave her a small dose of morphine. It wasn’t helping. Her heart rate was really high. Finally, they got the amount of Ativan and morphine right so she could rest. They also increased her high flow up to 10L and they increased her dopamine to 5. We will start again tomorrow trying to wean her off some drugs.
It was a stressful day. Poor Hana was the most stressed. It’s terrible watching a baby go through drug withdrawal. Nothing calms them. I hope her heart can get some rest from the last 12 hours of agitation.
I went for a jog in the evening. I was assured by a number of people that it would be good for me to get out. I need movement and fresh air. I need it to give me the energy to get through days like today – and I have a feeling there may be a lot more days like today. Towards the end of my jog I started to cry and I imagined holding my healthy baby in my arms. It’s hard to find peace and yet, I think if I can manage some moments of peace, I can find some more strength. I might just need to take more deep breaths. We go from holding our breath to letting go of a sigh back to holding our breath. That takes a lot of energy (as does feeling guilty). I need to move breath more freely.
I sat outside the hospital on a bench in my running clothes and cried into my hands. I kept thinking, “My baby, Hana. My baby, Hana.” Then I went inside.
Oh, my sweet Hana.
This is Hana as we are waiting for her new room to be ready:
This is Hana finally resting:
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:
Hana was wide awake for many hours today. She spent a lot of the time looking around. We tried to entertain her with toys, songs, games, books, music. She’s not quite ready to entertain herself, it seems. She isn’t quite looking or acting like herself yet. She will look at you for long, long moments.
I’m hopeful and then almost scared of my hope. I need to remain in the present moment. That is my coping strategy. My baby, with a very sick heart, is sleeping (hopefully) down the hall where a nurse is constantly watching her. That is what it is, presently.
I love Hana. She would not fall asleep tonight. Much like it would be at home, on a normal night, I finally had to tell her “Good Night” and leave the room so she would allow herself to fall asleep.
There are so many people to thank. I’ve had people tell me I am strong, if that is so, it is only because I have been carried by all the love, support, help, thoughts and prayers of so many people. Thank you. It has touched us so deeply.
Here are some photos from today:
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.
Hana had a good night. Her heart rate is still pretty low but they are watching it carefully and so far everything else looks ok. When her heart rate is a little higher they will start her on beta blockers. For her breathing support, they will continue to wean her flow and hopefully get her on low flow (I think this is what it’s called) by tomorrow. They will wean her dopamine today too. The optimal plan, I suppose, is still to get her on oral medications and bring her home. There is still a slim enough chance that her heart could recover (although probably with decreased function), so we need to give that a try. But the next few days or week might tell us more if that is a possibility or if we need to get a Berlin heart for her or continue to keep her heart until a transplant heart becomes available.
Hana was quite active this morning! We sang and showed her toys. Maybe today we can even hold her.
Hana's Heart 