Lucile Packard Children’s Hospital – Page 4

Big Day Today

Posted on February 19, 2015 by katmeander

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:

CT Scan

Posted on February 18, 2015 by katmeander

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:

Presidents Day Plan

Posted on February 16, 2015February 16, 2015 by katmeander

Today started positive despite the arrhythmia Hana was having in the night. It was the best I’ve seen her since arriving at the hospital. She was playing with toys and alert. When she was sleeping she looked like the baby I know at home!

Today they took out her breathing tube and I heard her little voice for the first time in a long time. Unfortunately, despite doing beautifully on the CPAP, she had to have the breathing tube put back in. She was really struggling to breathe and she was trying to cry. Putting the breathing tube back in was really scary. Her heart rate was crazy. Her throat was so swollen they had a difficult time getting the tube back in. I cried and kept visualizing her safe and cuddled in my arms. They don’t think the swelling has to do with her heart. They’ve started her on a steroid to help with the swelling and will try taking the breathing tube out again in a couple of days.

We got to see Poppy too. We have amazing friends too! I can’t say thank you enough.

This morning:

Breathing tube out:

Me and Paul reading her a story last night:

Hana and I dressed to practice “swimming” in the bathtub about a month ago:

Sometimes I look over at Paul and I think, “How is it that this is happening to us? How is this possible?”

It’s Hard On My Heart

Posted on February 16, 2015 by katmeander

Hana had a good day. They increased the amount of breastmilk they are giving her and they decreased her dopamine. She was very agitated throughout the day and they did end up giving her a small amount of sedative. She would wiggle around and try to pull out her tubes or rub her eye. She had a good chunk of time were she was alert and we read her stories and talked to her. She even tried grabbing at her hanging toys or the pages of her books.

The evening plan is to do a couple of CPAP trials in preparation for taking out her off the ventilator in the morning. That being said, her heart started being erratically but her blood pressure was ok. Doctors came in. They did an EKG. Meanwhile, they were cracking open a baby’s chest a few rooms down and installing an ECMO device/machine (an emergency procedure to take over the work of the heart). It felt tense. I started to cry. Again. It reminded me how hard this whole thing has been on my own heart. I love Hana so much and it hurts so much to see her suffer. Sometimes she tries to cry (but she makes no noise because of the breathing tube) and her face has the look of pain on it that breaks my heart. I want to hold her and cuddle her and soothe her. But I can’t, yet, and it hurts my heart.

I love this baby (and her heart).