Sunday, February 17, 2019

Happy Heart Month!

It's February, which means it's Heart Month! Not only that, but the week of Feb 7-14 was dedicated to Congenital Heart Disease (CHD). This includes Ramona's Hypertrophic Cardiomyopathy. Between the CHD moms I've met and the heart-related Facebook groups I follow, my feed has been full of stories about precious little heart babies and equally precious bigger heart kids. There are two things that have really weighed on me as I've read through all of these stories. First, as I've already said, these kids are so. precious. They are treasured, loved and valued. Even with the extra worry, extra work, and extra cost that comes with them, there's no denying that their families wouldn't trade them for the world. Second, we are incredibly blessed with how easy we've had it with Ramona. We haven't had to worry about feeding tubes, developmental delays, oxygen levels, multiple medications (none at the moment), or any of the other issues that seem to so often go hand-in-hand with heart conditions. She continues to grow, thrive, play, and live like a normal 2 year old. Really, it's crazy how easy she is. We certainly don't deserve it.

We had a heart check-up on Tuesday, and everything is still basically the same. No healing yet, but we are so thankful for how well she's doing despite how her heart looks. We spent a lot of time in preparation a day or two before this appointment, because her last few echos have been ROUGH, to say the least. In an effort to avoid pinning down a hysterical, sobbing toddler yet again, I walked through the process with her several times. We practiced what we would do, looked at pictures from previous visits, and got excited about a "special treat" (a.k.a. cheap toy from the clearance aisle) that she would get while we were there. Each talk ended with her saying something like "Yeah! Okay!", until we were getting ready to go the morning of the appointment. We went through it one more time and I told her we were going to go do it now, and she looked at me very seriously and said "No. Not do that." *sigh*

Getting checked in before her echo-cardiogram.

When we got to the small room where they do the echo, she was nervous but let me take her shirt off and sit with her on the bed. As we were getting situated, she started to lose it and began to cry. We crossed our fingers and popped out a new toy, which was quickly greeted with a teary "Oh...Okay!" and those tears dried right up. That was 75 cents well spent! With her toy in hand, we watched a puppy cartoon and breezed through the echo.

Watching a puppy cartoon.
I was feeling quite satisfied with myself for how well the echo went, but, for all the time I spent practicing echos at home, I never thought to go over the blood pressure cuff or pulse-ox. *facepalm* Since we'd already brought out the big guns (tiny toys), we just had to power through a mess of a vitals reading. Her heart rate came in a little higher than usual, but hysterics will do that to a person.

I made sure Nathan got a picture of these steps
so that we can go over them next time, too.
Daisy helped with the weighing and measuring, as usual, and then the girls had some fun in the exam room while we waited to see the doctor. (Maybe we need to have Daisy do the pulse-ox next time, too?)

They always play hide and seek, even
though there are literally three hiding places,
and none of them actually hide you.

She was excited about the seat she found.
We met with the doctor, and Ramona was nervous about the stethoscope, but her doctor is very good at putting Ramona at ease and even making her laugh. She was happy with how well Ramona is doing and glad that everything is still stable. We did learn something new, though. We knew that the walls of her left ventricle are exceptionally thick, and we also knew that this makes the cavity inside smaller than usual. We didn't know that when her heart contracts, the inner walls of the chamber come very close to touching (or "kissing"), which has the potential to cause the valve (I'm not remembering clearly if it's the actual valve or the area around it) to essentially get pinched, which would prevent the blood from being able to move through the heart. That is one of the things they're monitoring and one of the reasons she has new echos done every two to three months. They haven't seen any signs of this happening yet, but we need to make sure we're keeping a close eye on her heart so that we can adjust our course if it seems like we're heading that way. They also still haven't had any issues with her thickened muscle obstructing the flow of the blood leaving her heart, which is good news, too.

They had this cute heart wall with capes set up
 for taking pictures.

😍 Seesters 😍

Even though Daisy's heart is perfectly normal, she got a heart wall picture and new toy during the echo, too. Ramona's health is a big part of all of our lives, and we want to keep things as normal and similar between the girls as possible, which, for now, means treating an appointment day like just another day running errands. Is that the right thing to do? *shoulder shrug emoji* But it's working for us and for the seesters.

- For Ramona to continue to thrive
- For her to stay healthy (she's avoided almost all illnesses the rest of us have had!)
- For her heart to be healed

Basically the same requests we've had all along. But, we continue to lift them up again and again, because we know they are heard even if they aren't answered on our schedule or our terms.

Aaand here go the pictures. 😁 We celebrated Christmas early at our house so we could head to Florida and celebrate with family there.


We got them a dollhouse, and Ramona will
play with it for hours. She loves people that
came with it and uses them for everything.
She even asks to take them to bed at night.

Playing with GG.

At the zoo with grandma and the cousins!

Feeding giraffes! Ramona was not a fan,
but Daisy loved it.


That's Daisy and Nathan in the tube. Ramona passed
 on this one, too, which is understandable.

Ahhh, flamingos. Definitely more her speed. The
humidity made her hair so curly!

Sharing binoculars with her cousin.
Cute cousins! 😍

Stretching our legs during our very long
drive home.

Then we came home to sub-arctic temperatures
and mounds of snow and endless winter. It
was fun at first, but I think I speak for America
when I say we're totes over it now.

Their aunts helped make an igloo.

Celebrating great grandma's birthday, and they can't keep
their eyes off that cake. 😂 They ADORE that baby cousin
sitting between them, and she was probably glad the cake
distracted them from her for a while.

Movie night.

Totally random, but too funny not to share:
This is my tiny nephew who really needs to
work on his IKEA endurance. 

This was taken first thing Christmas morning.
Even her hair was excited.

"This is the day the Lord has made;
let us rejoice and be glad in it."
- Psalm 118:24

Officially 1A

  Tie-dye projects As of Friday night, Ramona is officially on the 1A (highest priority) transplant list. There’s not much to update on othe...