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

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.

PRAYER REQUESTS:
- 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

Loop Recorder Plan

Hey there! I never know how to start these updates. After re-watching some good old episodes of The Office, Michael Scott has informed me that I should always start with a few jokes. We'll just do one for now. Here goes...

What is the best thing about Switzerland?

I don't know, but the flag is a big plus!

😄

Okay, okay, back to business. We had our appointment with the elecrophysiologist to look into getting a Loop Recorder implant for Ramona. We learned a LOT during that hour. What they are ultimately trying to figure out is whether the episodes she had were caused by an electrical problem or a pumping problem. The Loop Recorder will be able to record irregular heart activity and hopefully help answer this question.

The Loop Recorder. Image courtesy of Google.

What is a Loop Recorder? It's a small device implanted under the skin that "listens" to heart activity, and, when it hears something irregular, takes a snapshot of the previous and next 5 minutes of activity. We can then transmit the recorded activity directly back to the doctors using a transmitter that we will keep at our house. We will also have a button (kind of like a garage door opener) that will stay with Ramona that can be pressed when/if we observe her having the symptoms she did during her episodes, which will make sure it records at that time.

Putting the device in is supposed to be a simple, out-patient procedure with partial anesthesia. They'll keep a close eye on her heart rate during the anesthesia to make sure it doesn't drop too low, and, if all goes well, we should be able to go home the same day. We are scheduled for this procedure on Wednesday, February 21. She is due for another echo this month, too, so they will do that at the same time.

The doctor we talked to said he isn't worried about this procedure at all. The only thing he might be concerned about is what we might learn from it. If we find that there is an electrical problem, we might need to evaluate whether it is severe enough to warrant a defibrillator implant, which is a MAJOR surgery in little ones. He told us all about it, and yikes. There are a lot of serious risks and complications that can go along with it, too, so we don't want to mess with something like that unless it is absolutely necessary. If we find that there is a pumping problem, we might need to look at the surgery that would carve out part of the heart muscle. Also yikes, and also something we don't want to mess with unless absolutely necessary. 😩 I'm sure there are a lot of things to consider when it comes to deciding what action to take and when to take it, and we're grateful to have a great team of doctors we trust to lead us along the way.

Of course, we followed up our appointment with lunch at Chick-fil-a.
I feel like they should probably hire Ramona as a spokesmodel. :)

So, for now, we just do the Loop Recorder implant and wait to see what we can learn from it. We feel good about this procedure and are relieved that we might be able to find out what has been going on with our Sugar Baby. Better the devil you know than the one you don't, right? And, other than those few incidents, Ramona is doing great, which we're always grateful for.

I think that's it for now. Oh! And a little good news, we were able to take a make-up trip to visit the girls' Grandma in Florida!!! Thanks to the Family Medical Leave Act (FMLA) which allows me to use unpaid time for Ramona's appointments, I was actually able to scrounge up a couple of vacation days to make up the trip we sadly had to cancel at Christmas time. I'll share some pics after the prayer requests! :)

PRAYER REQUESTS:
- Ramona's Loop Recorder procedure this week! (Feb 21 @ 11:30 AM)
- A quick and easy recovery without too much discomfort.
- Our doctors (for the procedure and for what to do with any information we learn)
- For Ramona's heart to be healed

Thank you for continuing to pray for our sweet Ramona! Now here are even more pictures than usual. :)

Books, toys, coloring, and water painting for our plane and car rides!

<3

And that sums up how she felt about the beach.
Hated the sand. Hated the water.

LOVED sitting in the shade eating as much
watermelon as she could get her hands on!

Cousin fun!

Ice cream with Uncle Messy!

We visited a local aquarium. Daisy did NOT like the sharks.
Ramona got to pet a snake, but I didn't get a picture of it. *facepalm*

We even got to go to Disney for 2 days with Grandma!
The Magic Kingdom really is magical!

We bought a fan for Ramona so she could cruise cool and comfy.
We ran that baby all day and had to replace the batteries on the second day.
(Pardon the sleepy eyes, this is right before a nap :) )

Not her favorite ride. But also not her least favorite.

Mo LOVED seeing this Donald, but hated every other
character we saw, including another Donald.

SO EXCITED TO SEE ANNA AND ELSA.
She could hardly stand it. Cutest. Thing. Ever.

Elsa made it snow!

Animals outside our bedroom window! Ramona loved to go on the
balcony and check them out first thing every morning.

We came across some singing, dancing bears, and she was
so excited! Almost as excited as my chins.

Daisy loved the characters from a distance, but didn't care for them them up close. :)
Side note, we loved this restaurant! Good food, tons of characters, and they even gave
the girls some new toys after letting us wait inside until our reservation time to keep
Ramona out of the heat. We had a great time here despite the crying :)

Watching a parade.

Ramona actually did like Olaf, but mainly his carrot nose.
Daisy almost liked him, but was scared when he didn't talk.

Daisy is definitely a fan of flying! You can't go wrong with juice,
pretzels, and PJ Masks!

Cuddling the new toys she got at the character restaurant we went to.

This big sister is getting too big too fast.

In this world you will have trouble. 

But take heart! I have overcome the world.

John 16:33b