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.
Hana's Heart 
I think I would be agitated too!! An “Old Crank” is what they’d call me! But in Hana’s case, she’s still a sweet baby and she is entitled to be a bit cranky – so says me, her oldest 2nd cousin on the Yago side.
Sending our love and hugs.
Gary, Brenda and Ashley
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Restful thoughts to all of you, and hoping Hana continues on this path of decreasing support so she can have a break and get a change of scenery soon. With all our love and support, Suzanne, Matt, Delphi and Travers
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Day by day now and not minute by minute. I hope you can allow yourselves to take care of yourselves. Now sounds like a window for some self care.
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I don’t love that she had lots of tubes all over her but I love that she has hearts to tape down her tubes. I know her nurses love her!
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Still praying for your beautiful little girl…every day since I saw your first blog entry. God is good, prayer is powerful, and if she is anything like her Mother, I know Hana is a strong girl! Love and hugs to you and your family, Kathleen 🙂
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…and I forgot to put my name in before posting the above comment – I’ll blame it on the “toddler brain” :p
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Love to you, Paul, and Hana.
If you don’t know the number yet it’s 1 in 110. That’s the number of babies born with a CHD. The most wide spread birth defect. It’s a really challenging thought.
Your photos bring back memories for Lauri and me. I pray that our photos bring you guys joy and hope.
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