Month: February 2015

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:

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!