Loopy Loop Recorder

Hi! Just a quick update today. We had to make a trip back to the cardiologist this week because Ramona's Loop Recorder has been acting loopy. 😉 We didn't quite manage to hold off until our appointment in June, but 2 weeks certainly isn't our shortest run between visits, so we'll take it!

We got a call last week that her recorder had sent an automatic transmission (which means it automatically recorded activity within certain parameters programmed by the doctor, but we didn't observe anything that caused us to use her button to mark it and send it ourselves) that included 9 "events" during one day. For the one event they could read from the automatic transmission, they could see that it was double counting the beats, so it was saying her heart rate was 200 beats per minute when the doctor could see that it was really only 100. We sent a manual transmission so that they could see more of the data, and they confirmed that all of the readings were caused by the Loop Recorder being goofy, not by her heart doing anything it shouldn't.

That was a relief, but it still necessitated a trip to the office so they could try to reprogram the settings. The way this works is that they have a wand-type-thing that I hold against her chest right over the implanted Loop Recorder, and it basically works like Bluetooth and allows them to download extra data, monitor her heart in real-time, and adjust the settings. Easy peasy! What wasn't easy peasy was getting the settings to work how the doctor needed them to. He showed me how it was ticking off each heartbeat, but it was also ticking off places it thought it saw "beats" in between the actual beats. He's guessing that the ablation in Chicago altered how electricity moves through her heart in some way, which was causing it not to work with the current settings. He might have also mentioned that the way the Loop Recorder has moved a little from the original location might also be related, but I'm not sure if I'm remembering that correctly.

All of us girls waiting to see the doctor! Ramona was
SUPER excited to have her own chair to sit in and
didn't want to give it up when I had to hold her. 😊
And that sister back there was such a good helper
this day! She helped get things for Ramona and keep
her entertained while she had to sit still for
longer than she wanted to on my lap.

The tricky part was that if he changed the settings to get it to ignore what it was seeing as fake "beats," it was hard to program it in such a way that it wouldn't also ignore overly slow rhythms, which is a bigger concern with her than overly fast rhytms. He got it to where he thinks it's our best bet for it to work correctly, but he didn't seem super optimistic that it really would solve the problem. We're going to give it a couple of weeks and see how it goes.

Ramona seems to be doing great, though! She still hasn't had any observable "spells" like she's had in the past, and she hasn't had any auto-recordings that were actually trouble. She's becoming increasingly independent, adventurous, talkative, and mobile! She's sooooo close to just taking off walking. She's really getting very good at it, it just usually takes some kind of bribery to get her to actually go for it. Hmm, I guess maybe she's just getting smarter than us, too...

PRAYER REQUESTS:
- That her Loop Recorder will work correctly and catch any unhappy rhythms
- That there won't be any unhappy rhythms to be caught
- For her heart to be healed

And don't think that a short update means that there is a shortage of pictures...

Her face when she says "Cheese" and tries
to smile on purpose. 😂

Daddy coaching sister before an Easter egg hunt!
She kept saying "I'm fast! I'm so fast!" as
she ran to collect the eggs. 😂

This might have been one of the most fun
things she's ever done. 

Easter matchers!

"What's in your dress?"
"It's not a pillow, it's a baby."

Our egg hunt on Easter Sunday took place in
the snow! Both girls still loved it!

Daisy likes to take my picture, too, but her aim needs work.
I have to jump to wherever she's pointing the phone.

They loooove the playhouse at Grandpa and
Mimi's. It's fun to see them enjoy someting
I loved so much as a kid.

They both love their Aunts' chickens, too.

Her first ponytail! 😂

He heals the brokenhearted

and binds up their wounds.

Psalm 147:3

Always waiting.

😍

We've been home for 2 weeks! Our time in the hospital felt MUCH longer than it actually was, and our time at home has, interestingly, felt the same. The beeping monitors, IVs, tests, and delicious (for real) cafeteria turkey burgers are starting to seem like a distant memory.

In case you haven't seen them yet, here are a few pictures of Ramona's homecoming! She was so excited to be home, and Daisy was so excited to have us back.

😘

My sisters made signs and hid balloons around the house,
which both girls loved.

Ramona has been doing great since we've been home and hasn't had anymore of her little episodes so far. She's really been on the move (maybe to compensate for being confined for so long?), and has had a couple little tumbles similar to the ones we think had triggered her episodes before, but they don't seem to be causing any problems for now. We're hopeful that stopping her beta blocker will keep those episodes at bay!

We had an appointment in Peoria on Monday to follow-up/recap on everything that had happened in Chicago. The electrophysiologist checked her Loop Recorder and it hadn't auto-recorded any unusual rhythms (yay!), and he talked a little bit about the EP study and corresponding ablation at Lurie. He also noticed that the device had moved a little bit from where it was originally placed, but that's okay. Overall, a good report! They'll continue to check for any auto-recorded transmissions once a month unless we observe anything out of the ordinary and have to push her button. Oh, the doctor also said that an ablation can change how an EKG looks, so they did a new one while we were there so that they would have a new base to compare future readings to.

She's an old pro when it comes to EKGs. Even though those
stickers are tempting, she lies so still and waits so patiently.

We also saw our regular cardiologist, and we went over what had happened and what our plan would be from here on out. While a beta blocker is usually how HCM is managed, she agreed that, in Ramona's case, the risks outweigh the benefits. We will keep her off of it for now and just continue to watch her closely. Her heart rate checked in at 87, which is pretty low for her age, so hopefully her body will continue to keep it down naturally. We'll also have regular check-ups so they can do echos and keep a close eye on her.

We got to see the whole gang there at the congenital heart center, and, let me tell you, it felt like Christmas. I just wanted to give everybody a great big hug. Don't get me wrong, we were thankful to have good doctors up in Chicago, too, but boy is it nice to be back with familiar faces that make us feel right at home. Ramona even gave Dr Albaro a big hug before we left. 😊

While we are SO HAPPY to be home and SO THANKFUL we didn't have to do any major procedures right now, we know that our journey certainly isn't over. We're back to going about our normal days for now, but we're always aware that things could change any minute. It's a blessing to be able to push these big scary things off to the side, but we can't help but remember that they could swing right back in and knock us off our feet at any moment. We've received a bandaid for her situation (which we're very thankful for), but now it feels like we're just waiting for that bandaid to peel off. Always waiting. I still check on her a few times each night because I'm afraid something will happen suddenly. My heart skips a beat every time she plops down, wondering if her heart will do the same. I'm always thinking about the next appointment and wondering if her echo will have changed. *sigh* It's exhausting, but at least we're home, she's happy, and we're all together. And we can hardly wait for the weather to warm up so we can finally play outside!!! 😊

Our next appointment isn't until June 5, which will be our new record if we make it that long! Please continue to keep Ramona in your prayers!

PRAYER REQUESTS:
- For her heart to continue to function as well as it is
- For her heart rate to continue stay low on it's own
- Thanks for her doctors/nurses/staff
- For us (me) to be able to relax/rest
- For her heart to be healed

And, of course, pictures! This time with a bonus video! (Warning: you're going to want to watch it like 14 times.) Daisy is alllll about the PJ Masks right now, and last night Ramona started watching it and copying Gekko. Go ahead, watch it. Both of these girls just keep getting funnier and funnier all the time. 💗

Lunch at our usual post-appointment place!
(Note the sassy nail color. I think it suits her.)

Napping in the tiniest cart.

She always needs to see what sister is up to.

💗

Tiny cone for Princess Anna.

And a bit for Sugar Baby, too. She was so excited/goofy
that I couldn't get a single picture that wasn't blurry.

Daisy always wants to do "projects" these days.
She spent almost an hour working on this project the other day.

Finished project. 😍

When I am afraid, I put my trust in you.

Psalm 56:3

But blessed is the one who trusts in the Lord,
    whose confidence is in him.

They will be like a tree planted by the water
    that sends out its roots by the stream.
It does not fear when heat comes;
    its leaves are always green.
It has no worries in a year of drought
    and never fails to bear fruit.

Jeremiah 17:7-8

GOING HOME! (aka - A Good Kind of Whirlwind)

We're going home!!! 💓

We can hardly believe it! When we transferred up to Lurie last 9 days ago, we thought we'd be here longer, and we thought we would be leaving with either a new device or a new heart. Not only are we leaving without those things, Ramona won't even be taking any medicine for now (except a temporary dose of baby aspirin, but that is just because of the procedures yesterday).

Sending her back for all of her tests yesterday!

Her results from her test yesterday were WONDERFUL. Her heart is still very thick, of course, but, despite that, her heart function is basically normal! They were worried about pressure building up in her heart and transferring to her lungs, and those numbers were normal. They were worried about blockage of her coronary arteries, and there was none. They were worried about scar tissue in her muscle, and there was some (which was expected with her condition) but not an excessive amount. They checked the electrical function of her heart and found an extra pathway that would have made it possible for her heart to short circuit, and they were able to take care of it with ablation. She hasn't had any concerning rhythms, blood pressures, or EKGs since we've been here. (Her EKGs certainly aren't "normal" for most people, but they're consistent and good for her.)

We got our sleepy head back after 11 hours of testing and anesthesia.

Cartoons, rest, and lots of water.

Since her heart function is so good and she is still doing so well on the outside, they aren't going to change anything or do anything right now, so they said we can go home! Will the options they talked about before need to be done down the road? Possibly, but today. 😊

And the 10 second pause on the loop recorder? Well, we found out while we were here that she has Sinus Node Dysfunction, which means that her heart doesn't beat at a normal rate. They think that this, in combination with the beta blocker, was likely what caused the pause in the first place. They feel pretty confident that stopping the beta blocker will help prevent similar events. They also don't think they she needs the beta blocker anymore anyway! In her particular case, the Sinus Node Dysfunction causes her heart to beat more slowly than normal. She was taking the beta blocker because, due to her Hypertrophic Cardiomyopathy, we want her heart to beat more slowly to allow it to work more effectively. So, basically, her heart is already doing the work of a beta blocker itself! Just what she needs! Ah-maze-ing. AMAZING.

We are so blessed to be going home, and we know that ALL of the credit for that goes to God. Things have turned out so differently, and so much better, than we could have imagined a few days ago (or even yesterday). Not only that, but we should be able to do follow up appointments back in Peoria rather than coming all the way back to Chicago. (You know I'm excited about that!) We'll continue to have regular check-ups and echos with our doctor there.

She was SO EXCITED to put on real clothes! We couldn't
get them on fast enough! It didn't even occur to me that
she would have missed that. 💓

Today has felt like just as much of a whirlwind as the day we were admitted and transferred to Chicago, especially after the long day we had yesterday. There has been a lot less crying in this kind of whirlwind, though. 😉 We thank God for hearing and answering our prayers so clearly and abundantly. We continue to pray for her heart to be fully healed, and we are so full of thanks for the prayers that have been answered today.

Thank you so much to everyone who has fervently lifted Ramona in prayer, and to those who have sent cards and gifts to brighten our day or help lighten the financial burden of being here. We truly cannot thank you enough.

We also have to say thanks again to the Ronald McDonald House. We cannot repay them for the relief and sanctuary they have given us during our hardest times. To have been able to have Daisy visit and stay with us here was such a gift.

We're spending the night at RMH tonight with Ramona, and my mom is bring our van up tomorrow so we can go home. We're so looking forward to an evening together OUTSIDE of the hospital, real sleep in a real bed, and, of course, seeing Daisy tomorrow. We'll continue to keep you updated on Ramona's story, and we hope that it will be a verrrry long time before we have anything else this "exciting" to report.

PRAYER REQUESTS:
- THANKS FOR ANSWERED PRAYER!!!
- Thanks for protection, guidance, mercy, and anything else you can think of!
- Good rest and safe travels
- For the rest of her swelling to go away quickly
- For her heart to be healed

Sporting the new t-shirt she got when she rode in the ambulance.

Waiting for the shuttle back to RMH.

She was so puffy from fluid build up when she woke up today. 😄
She already looks soooo much better tonight.

Ronald McDonald House gave her a new animal train that plays music.
Seriously, could this place be any more wonderful?

Finally, this is a verse that my mom forwarded to me a few days ago:

"I will give you the treasures of  darkness, 

riches found in secret places, 

so that you may know that I am the Lord, 

the God of Israel, 

who summons you by name."

Isaiah 45:3

💓

Testing, Testing

We're sitting in a waiting room for several hours today, which gives me the opportunity to finally update with some more information. Our days have been very busy, not only with doctor visits, EKGs, and such, but also with trying to keep an active baby occupied. She can't leave her room because she is in isolation because of her cold (she still has a bit of a cough and runny nose, but they say her lungs are sounding better), and she can't really move around very easily because she always has so many wires twisted up. Our room is very small, which also makes it tricky. We do a lot of furniture rearranging throughout the day to try to make our space work. It's tiring trying to keep her occupied all day. Thank goodness we brought the iPad so that we can at least let her watch some Netflix to break up the day.

This is where I live now. We push the rocking chair all the way back
to the corner so I can lay down the recliner at night.

She loves to bounce!

So silly 💓

She takes her Netflix VERY seriously.

Anyway, down to business. The doctors here are ultimately trying to decide what will keep Ramona the safest in the long run. The three possibilities they are trying to decide between are a pacemaker, an implanted defibrillator, and a transplant. These are some pretty serious things for someone so small, so they are doing a LOT of testing to try and figure out what is going on in her heart to help them make the best decision. Besides just the thickness, they have to consider how well the heart functions, how much pressure (if any) is built up, whether there are electrical issues, and whether there is scar tissue.

Ramona is having some big time testing done today. We were hoping she would be over her cold by now, but no such luck. She's getting a cardiac MRI, cardiac catherization, and an EP study, possibly with an ablation. It's pretty invasive stuff with a lot of possible risks attached, but it's necessary in order for them to choose the best treatment for her. She'll be under anesthesia and have a breathing tube for several hours today. We don't know exactly how long it will be, because the earlier tests might indicate that more or less needs to be done with the later tests. We pray that they will get some good answers today and that Ramona will be safe.

Just before we sent her back this morning.

We also, still, have no idea how long Ramona will have to stay in the hospital. I don't know how long it will take them to choose a course of action, and then I don't know how long of a stay will be required when they do choose. Hopefully today's tests will help us answer that question, too. Side note, we knew that Ramona's heart was much thicker than normal, but the doctors here said that it is 19x thicker than normal. 19 TIMES. Wowza. They also said that is is usually the inner wall (the septum) that is too thick, but in Ramona's case it's the entire left ventricle, which is unusual. Another odd thing is that people with this condition usually have issues with their heart rate being to high, but Ramona's problem is the opposite. Her regular heart rate varies from the 60s to 80s, and a normal heart rate for her age would be in the 110s. It gets even lower while she sleeps, which is why we have monitors going off so much in the night some nights. It's not uncommon for it to be in the upper 40s in the night. They also think that there might be an extra electrical connection that is affecting her rhythm.

On a positive note, we got to see our sweet Daisy over the weekend. We Skype with her as much as we can, but it's just not the same as seeing her in person. She couldn't visit Ramona, but at least we got some time with her. I'll post some picks below.

PRAYER REQUESTS:
- For Ramona and the doctors during all of her tests today
- For her cold to go away
- For answers
- For rest
- For Daisy
- For Ramona's heart to be healed.

A Star Wars troupe visited the Ronald McDonald House. Daisy kept calling
them "The Costumes." They gave her books and toys, and she loved it. She
calls her new BB-8 toy "Baby Star Wars," and she kept asking if she could see
The Costumes again.

"WHOA. That is a big building."

Pretending her kleenex is a phone so she can call her mom.
Because she lost her keys. And needs directions to a party.
She's gotten so imaginative since we've been gone.

Her visitor tag from the hospital (just so she can get in the cafeteria area).
She was so excited because she thought it would work on the elevator like
our badges do. She swiped it every time.

Ramona got to play with Grandpa and Mimi while we spent time with Daisy!
We have a floor mat we can  put down for her to play on if we move all of the furniture.

Cora and Maddie!

Sliding on the roof at RMH.

For God gave us a spirit not of fear

but of power and love and self-control.

2 Timothy 1:7