World Heart Day

Today is World Heart Day. Heart disease is ubiquitous. We all know it. We've all seen it. But congenital heart disease is a different creature. Too many babies and children died to make people realize how common it really is. Of course, all of you know Izzy and how she was born with a broken heart. I do my best to raise awareness of what heart failure looks like in children because one out of every 100 babies is born with a heart defect and research can't save all of them yet. We need to do more and my way of helping the cause is sharing the impact of congenital heart disease on our lives.  (I guess that's not my only way since I'm the President of Michigan Chapter of The Children's Heart Foundation and do tons of fundraising, CHD outreach and awareness, but today I'll continue to share our story.)
 

Three weeks ago, we were dealing with uncontrolled pain. The following week, Izzy's hospice team doubled her morphine (30 mg extended release twice a day). The nausea and drowsiness knocked our girl out for most of that week. When she was awake, she felt miserable (not pain, but yucky all over). All we could do was watch and hold her.

It would be hard to over-emphasize how incredibly hard living through the last several weeks has been for our family. I have no words for the emotional turmoil and strain caused simply by witnessing the extreme pain and then the falling asleep nonstop Izzy experienced. All the while, we are supposed to be normal. Izzy is in 5th grade, so we are supposed to be finding an instrument for her to play in band or orchestra. We are planning for 5th grade camp that takes place mid-October. There are school fundraisers and curriculum nights. But, we're also watching our daughter in a battle for her life. In between filling out school forms, we are answering questions about "why is life so unfair?" and "how can I get bed to to raise my feet higher so I might not hurt so much?" (when she already looked like a taco in her bed).

None of that touches what Izzy feels. That small child endures so much. Even though there are a lot of tears and much anger, she still endures it all with such grace.

We did have a smallish reprieve at just the right time. A week ago Friday and Saturday, the pain meds controlled the pain completely and she was no longer groggy and nauseated. What a blessing as Izzy was a speaker at the 8th Annual Southeast Michigan Congenital Heart Walk. Find a video of Izzy's speech on Facebook at this link: https://www.facebook.com/CongenitalHeartWalk/videos/178001399700904/. She is introduced at 3 minutes, 17 seconds. She was fantastic and so composed. The rest of us in the crowd were not composed when she done talking, but she was composed. 

The Walk was an amazing day!

Since then, Izzy's pain is mostly controlled, but she has been regularly waking up with chest pain and the dry hacking cough of heart failure. Once she can start to move around, the pain and cough usually subside. But there are just days when she feels miserable.

Izzy did make it school twice this last week, about two hours each day. She gets so exhausted. She went on Thursday and then came home and took a long nap. She sleeps often these days.

Izzy barely eats. There's just not room in her swollen tummy nor blood flow to support proper digestion. That just means she gets ice cream as a greater proportion of her diet (ice cream is full of fat and seems to digest much more easily and it's her favorite).

Overall, we've clunked our way down another couple steps, but feel we reached a landing for today. I'm not going to sugar coat this though, it's all difficult. I want so much to give Izzy all of the life that she is missing and will miss in the couple hours a day she has energy. None of it feels like nearly enough. It's like I'm trying to pour water into cupped hands for her to drink. No matter what I do, only some water can fit and it all spills or leaks out in a short time, with most never reaching her mouth. So I refill. But what she really needs is a cup and I can't give that to her.

Because I am desperate to try and make life meaningful for Izzy and fun as it can be, to balance out the giant crap storm (sorry for the vulgarity; I'm too tired to find a better descriptor), we have many exciting things coming up for Izzy. They are surprises, but I will post when public, as they will be wonderful.

Thanks for checking in on our girl,

Mel