Thursday, March 22, 2018

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!

- 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

Wednesday, March 7, 2018

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.

- 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

Tuesday, March 6, 2018

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.

- 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

Friday, March 2, 2018

The Whirlwind

Loop Recorder day! This was right before we sent her back with the nurses.

I finally have a minute to (kind of) catch my breath after the whirlwind we've been trapped in the last few days. *sigh* This is going to be super long, but here goes...

Ramona got her Loop Recorder last week, and that procedure went as well as we could have hoped. It was about an hour and half from the time we sent her back until I could go to recovery to sit with her. The only issue was that she was bright red from head to toe after the procedure and we weren't sure why. We waited around a few hours and the redness eventually went away, so we went home. The next day she acted like nothing had even happened! It was amazing. We were happy, relieved, and thankful that things had gone so well. We were given a transmitter to keep beside her bed that would send any recordings each night and a button to keep in the diaper bag that we could push when we noticed symptoms.

On Saturday, Ramona had a small fall and smaller version of the episodes she had been having where she went limp and it seemed like she almost passed out. Unlike some of the other episodes, this one lasted less than a minute before she was acting like herself again. We pushed the button we had been given to record it and went about the rest of our weekend as normal.

Monday morning, I dropped the girls off at my mom's and went to work. An hour into the work day I received a call from a nurse at the doctor's office asking about the details of what happened when we pushed the button on Saturday. She said she would show the results to the doctor and he would get back to us later. The doctor called back very soon and said that there was irregular heart activity around the time we pushed the button, including a TEN SECOND  PAUSE between beats. That was a punch in the gut. He said he first impression, based on these results, is that she might need a pacemaker rather than defibrillator that had been mentioned before. He said that we should bring her to the Children's Hospital at OSF to be admitted right away, and that she probably would have to stay there until she could get a pacemaker. We went home, packed bags with a few days worth of clothes, and dropped Daisy off at my mom's house.

We checked in at OSF just after lunch, and it wasn't long after that before one of the doctors came by with a print out of the tracing from her loop recorder that showed basically a straight line for 10 seconds. He said that, after further review and talking it over with the other cardiologists, they thought it was best that we be transferred to a hospital with transplant center before anything is done. He said that a pacemaker would help with the pauses in heart rhythm, but it wouldn't help with the underlying problem that she just has a really bad, really thick heart. He said that it didn't make sense for them to start doing procedures in Peoria if she was ultimately going to need something different soon, and he thought a hospital capable of doing transplants should make the call.

She was so excited that her aunts came to visit while we were at OSF.

It puts a knot in my stomach just thinking about that conversation. A transplant has been mentioned before, but always as a last resort kind of thing, which made it seem like it was far away. And now, here we were talking about moving to a different hospital all of a sudden because it might be the best option sooner rather than later. There are just a lot of uncertainties that need to be explored before they can figure out what will be best for her. My parents brought Daisy over that night so we could see her, which was a bit of a boost for us. But, then the rest of the night was rough. They tried to start an IV without success, and then they had to check her vitals every hour, which means neither of us got much sleep. And, Mo has a virus that comes with a nasty cough, which also didn't help. We were already wiped out on Tuesday when they tried the IV again and finally got it to work after couple of miserable tries. Then, we waited to see if Lurie Children's Hospital in Chicago would take her as a patient and if they had a room available for her. They did, and a transport headed down from Chicago to pick up Ramona and me. It all happened so fast. My mom hurried over with Daisy so we could see her again, and we started making arrangements. We found out that we could stay at the Ronald McDonald house and that children are welcome there, so we made plans for Nathan to go home, pack some bags, and then drive up with Daisy later that night. I would ride in the transport with Ramona.

Daisy, Hide and Seek Extraordinaire.

Shortly before our transport arrived, someone from Lurie called to let us know that, while Daisy could stay at the Ronald McDonald house, she couldn't come to the floor of the hospital that Ramona is on. So, she could never see Ramona, and Nathan and I could never both be with Ramona at the same time since someone would always need to stay back with Daisy. Even if there was an emergency, Nathan wouldn't be able to come be with Ramona and me. We had to make the heartbreaking decision to leave Daisy with my parents and have Nathan come up without her. What's a mom supposed to do when she isn't allowed to take care of both of her babies? When she has to choose between the two of them?

On top of that, we were just sitting around waiting for a transport to arrive and take us into a completely new unknown. Waiting for something you're scared of is a horrible feeling. We had been very happy with the experience we had at the Children's Hospital at OSF and at the Congenital Heart Center there, and LOVED the doctors we had there. They had been such a blessing to our family, and it was very hard to leave that for the unknown. Our transport arrived and packed Ramona into a giant stretcher. Following them out of our room, leaving behind both Daisy and our doctors, and heading for who knows what, was one of the hardest things I've ever done.

Watching Toy Story on the way to Chicago.

The transition up to Chicago was a rough one. Not the drive itself, as our transport team was such a blessing at that time. They were kind, compassionate, and even funny. They somehow made the trip itself  be something other than miserable. Ramona was able to watch a cartoon until she fell asleep and slept the rest of the drive. Getting settled into the hospital was very hard. We probably arrived at Lurie around 9 PM. We got checked into our room and Ramona had several tests done and vitals checked and was all around poked and prodded until she was pretty miserable. I told them we hadn't had supper since we were driving during dinner time, but they never offered us anything to eat. I had some graham crackers in my bag that I tried to feed her, but she was too tired to eat anyway. Nathan got in late that night, and my mom rode up with him. I could barely wake myself up enough to say hi to them before they went to find someplace to sleep.

They kept telling us how nice it would be up here. We are in a tiny little room where we have to rearrange furniture every time people come in the room just so you can walk around and get to things. There's no tv or bathroom, we have to pay for food, and parking is $15 a day, which is pretty despicable. We ended up having mom drive our van home so that we don't end up giving the crap-town of Chicago a thousand dollars in parking fees.

Out our window.

Then, Ramona is in isolation because of her cold, and we didn't realize we have to wear the same isolation gowns and masks as the nurses anytime we're in her room (which is basically always) until an angry nurse came and got mad at us. I had taken my shoes off while I was holding Ramona, so I started crying (for like the fourth time so far that day) and went out to the hallway to get gown, where I then slipped and fell right on my bottom and started bawling. Which was awesome. Such a great day. Definitely one for the scrapbook. I spent basically the rest of day crying because I hated it here. And because Daisy is going to think we abandoned her. And because I wished we could somehow just to back to to Peoria and stay with Dr Albaro, Dr Jantzen, and Dr Orcutt. Ramona had various tests, and we met lots of people we didn't know and received too much information to remember.

So tired she fell asleep during her echo. 💓

Then we got a little beam of sunlight. Actually, a great big beam. Mom stayed with Ramona while we took a shuttle to check in to a room a the Ronald McDonald house. It's so much more than we could have hoped for. We have a really nice room with a bathroom, free laundry facilities, 2 free meals a day if we happen to be there at meal times (the ones we've caught have been reeeeally good), and all kinds of fun things for Daisy to do when she comes to visit. I can't wait to show her everything. There's also an open pantry, library, several family rooms with TVs, and a big kitchen we can use. To keep with the day's theme, I cried again while they gave us a tour. At least it was a happy cry for once. So far, Nathan sleeps at RMH during the night and I stay with Ramona, and then I go there in the afternoon to nap for a few hours while Nathan stays with Ramona since I'm up so much in the night. Between vital checks and coughing spells, we haven't been getting a lot of sleep during the night. We're so blessed to have our room at RMH to rest and recharge. I will never skip putting my change in one of those little boxes at McDonalds again.

Our room at RMH. Again, so thankful for this.

The last few days have been full of tests and trying to entertain an active baby who's cooped up in isolation with tangled up wires all over the place. They had to redo her IV today, so hopefully it's in for good this time, because that's the worst. We've had some really great nurses this week, and I'm sure we'll get used to being here and figure out how to "make it work" (said in my Tim Gunn voice). As you've can probably see, I've been a bit of a major complainer since we've been here, and I know that's not how I should be. I've had to apologize to nurses more then once for being grumpy with them when I shouldn't have been. A friend pointed out that I probably just hate it here because of the reason I'm here.

That's the basic overview of this week. I've got some information to share on the medical side of things, too, but I'll have to do that tomorrow. We've been told to expect that it will be a couple of weeks for testing and observation before they start to put a plan together, but I'll try to type up what we know so far sometime tomorrow.

She's been making her monitor alarm go off like crazy tonight with low heart rates, so she's been upgraded to checks every hour or two, which means even less sleep than usual. *sigh*

Here are a couple of prayer requests and extra pictures.

- For this doggone cough to go away!!!
- For all of us to be able to get more rest. It's impossible to get good sleep and we're running on empty.
- For her heart rate to stay up and these alarms to shut up
- For us to figure out how to make it work here
- For her heart to be healed
- For Daisy while she's waiting for us to come home  :(
- For us to find joy somewhere in sadness

And some extra pictures:

Bright red from head to toe after getting her loop recorder last week.
She gobbled up food and gulped down water as soon as she was allowed to eat.

Pretend picnic. Only cookies were served.

Two little cooks.

All of my sisters were home last weekend! I'm so glad
I got to spend some time with all of them then, and we're also
glad we got to visit Nathan's family in Florida before everything.

This garbage truck continues to be one of her favorite toys.
The thing on her arm is to keep her from messing with her IV.

Waiting for them to try to move her IV to the other arm. Not
a great morning for her. Those are hot pads to help get ready for it.

When they moved her IV, they covered it differently so she could still use her
fingers. After having them trapped for a few days, she kept clasping her
hands together and smiling :)

So studious! (last week at Mimi's house)


Yes, my soul, find rest in God;
    my hope comes from him.

Psalm 62:3

Test Results & Next Steps

  Sister snuggles! Ramona had her procedure/testing yesterday morning. She had to stay flat on her back for four hours following the cardiac...