Hana's Heart

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.

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.

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.

Last night I got more sleep. I could feel myself hitting a wall of exhaustion I had not known before. Even after bringing home a newborn who is too sleepy to feed well and you only get an hour of sleep a night for days because you are up trying to get her to eat more, this kind of exhaustion is different. Even after sleep, this kind of exhaustion is still there, like a coat you are still wearing inside.

Last night I even had a dream. I was in Rio de Janeiro, looking down on the city, like you see in the famous photographs with the statue of Christ the Redeemer with his arms outstretched. I’ve climbed, hiked all the way to this high point above the city. Then I turn and look behind me and there are more mountains behind me, taller and higher than I ever could have imagined. Its almost like they reach the sun, or could even crowd the sun out of the afternoon sky. How could the top of mountain be so high in the sky? And yet, despite how tall the mountain top was, it didn’t seem so distant – I could see the individual treetops at the peak.

Behind me too, was a building, a hostel or hotel or resort that was built into the side of the mountain, climbing up its side. I entered the building, into a sort of dining room. There were stairs that went up to the next floor. The stairs appeared almost like a ladder to the next floor because they were so steep. I started to climb the steps, which brought me to a new room. I stopped, looked around and took the next set of steep steps to the next room. I kept going and going.

The rooms were like the inside of a hostel – a place for travelers that felt more like a home than a hotel, but not so fancy as a Bed & Breakfast. It was hard to imagine that anyone had done this journey before me, but obviously they had and had decided to build this place for travelers who came after them. After my pause, I kept going. Sometimes there was the option to take an escalator, but I always chose the steps, this is my habit in waking life too. But then I got to a room where there were only escalators, no steps, to the next floor. So I took the escalator and it was so steep I felt like I would fall off. I held on to the moving handrail and felt my body want to give in to gravity and tumble down. I think I made it too the next floor – but just then, I woke up.

I ask myself now, was I headed to the very top of the mountain? The answer is not clear to me, not as a thought. What I “know” is only a feeling, that I was drawn to the top, not by curiosity or desire, just a subtle pull to move upwards. I wonder what about the situation now I’m trying to work out in my subconscious. I hope I can learn how to be a good mother to a hospitalized baby, it’s a whole new ballgame.

Here is a picture of Hana and me:

It’s taken me longer to sit and write this update. Plus rounds seemed later than previous. In the night Hana had a fussy episode. Overall her heart rate is lower than it has been but she still has adequate blood pressure. They restarted her breastmilk feeds overnight. She is getting tons of electrolyte replacement and they are considering taking her off of one of the three diuretics she is on. Overall they feel she handled the trauma of removing the breathing tube, struggling to breathe, then having the breathing tube put back in, really well (her mom, dad and two grandparents did not handle it very well). They are going to switch her from fentanyl to morphine and up her feeds again today. The big question is what kind of imaging should they do now. They want to take advantage of her being intubated. They had a discussion between MRI, CT scan or a cath. I think they are leaning towards CT scan, especially since it is less invasive. She could have the imaging done as early as today. They will wait 24 hours after that before considering taking the breathing tube out again.
This was Hana this morning.

When a pediatric doctor tells you that, if you fall to the floor when he/she is trying to resuscitate your child, they are just going to shove you aside, there may be cause for worry. That’s what they said to me and Paul before they re-intubated Hana this afternoon. Fortunately, there was no need for resuscitation.

Hana is resting well after the afternoon’s drama. She woke in the evening and cried – or tried to, it makes no sound when a breathing tube is involved. This breaks my heart. I’m feeling some thirst for personal touch, after going so many days without holding my baby. I just want to hold her. For now, I try to lean over her bed and try to get a hand on her – maybe that’s more for my comfort than hers. I love that baby.

Here is a quote my sister sent my mom by the Venerable Solanus Casey, a Capuchin friar and priest:
“Do not pray for easy lives; pray to be stronger people.
Do not pray for tasks equal to your powers; pray for powers equal to your tasks.”

Here is a picture of Hana in December: