Withdrawl

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:

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This is Hana finally resting:

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The First Thank You

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:

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Good Night

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:

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Holding Hana

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.

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February 20th Plan

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.

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Six Months Old Today

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!

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I love this sweet baby.

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Breathing Tube Is Out

Around 3pm they took Hana’s breathing tube out. It seemed to go smoothly except the head gear that keeps her mask on her face. But that’s somewhat minor. I heard her little weak cry! After a while she stopped belly breathing and started to look more relaxed. Then about 30 minutes later they started high flow (I can’t tell you specifically what that means) with the nasal cannula. So far so good, but we’ll know more about how she tolerates it in the next couple of hours.

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Big Day Today

Today, after rounds maybe as late as early afternoon, they are planning to take the breathing tube out. They will do another CPAP trial before then just to make sure. This is big. If she can successfully come off the breathing tube, then we continue the course of lowering medications. If not, she may have to get a heart pump (Berlin Heart). After the last drama of this attempt we are all nervous (doctors don’t look nervous, at least).

Maybe I will get to hold her soon. I fear I am forgetting what it feels like to hold my baby.

It feels a bit awkward to mention this, but people have started asking – we have a fundraising page. My friend Alyx started it. When it went live last night I saw people had already started to donate and I cried for a long time. It’s not so much the money I see as it is the love and support.

http://www.gofundme.com/hanasheart

Here is Hana when we were at my parent’s house after Christmas:

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CT Scan

So, we were kind of hoping that the CT scan would show something wrong with Hana’s coronary arteries because that is easy to fix (relative to a heart transplant). We knew the likelihood of all this being a coronary problem was very slim. As it turns out her coronary arteries are just fine, that is no longer a hope.

With all the unknowns, my dad keeps asking, “What should I be rooting for?” There’s a very slim, outlying chance that, given enough rest, her heart could recover. Or it could recover enough where she wouldn’t need a transplant for years. The mortality rate for transplant patients increases the older they get, so delaying it seems best. But, because she is so young, if she got the transplant now they believe that there is less chance of her body rejecting the heart, therefore making now more ideal. They don’t have enough data on transplants in infants to be able to say with certainty if now is for sure the best situation. So, it’s hard to know what to root for.

Here is Hana about three weeks ago:

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Plan for February 18th

Hana had a pretty good night. I went in her room around 4am and sat with her. She had awoken before my arrival and I stayed until she was settled again. This morning she was calm and restful until mid-morning when she would thrash a bit and cry her silent cries. A silently crying baby is difficult to witness, especially when there is very little you can do for them. I tell her softly, “I hear you.” So, hopefully she gets the sense that her cries, her pain or discomfort, are being acknowledged, that she is loved and cared for and that we are doing all we can for her.

After rounds the report is: her heart rate is low (high 80’s to low 90’s) but she is tolerating it well. Her profusion is good. Her exam was as good as on Monday. They will do a CT scan of her heart and head around 1pm. They will attempt to take her breathing tube out again tomorrow.

We are so thankful to everyone. I hope to get a chance to reply to messages soon. Please keep sending them if you feel the desire. Or comment on the blog. We cherish each and every one.

Here is Hana this morning covered by a blanket I’ve been stuffing in my shift while I sleep so that it smells like me.

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