"It's my own Anniversary!"

One year ago today, Ramona had her myectomy. When I told her that this milestone was coming up this week, she said with excitement "it's my own anniversary!" So, we celebrated! Her sister lent her a special dress, and we all went out for her favorite chicken and fried rice for supper, followed by a scoop of ice cream. What a blessing to be able to celebrate God's loving kindness to her and our family. 

I had intended to post an update after we were home from the hospital *last year*, but that obviously didn't happen. It was a bit of a shock to all of us to be discharged from the hospital so quickly, and then life just kept coming. 

Those first several weeks at home were really hard. Ramona had no issues with pain whatsoever, which was such a blessing and answer to prayer. However, itching around her incision, which hadn't even been on our radar, ended up being a big issue. Between major lack of sleep (due to itchiness) and her little body trying to heal and figure itself back out, Ramona was just not herself at all for several weeks. And, really, we were all out-of-sorts and barely keeping our heads above water.

Besides several post-op follow-up appointments, Ramona was referred for cardiac rehab, which had us going up to Chicago at least once a week until the end of the year. 

The start of the new year really felt like the beginning of a new start. Ramona was feeling good and back to her old wise cracks, and we were finally getting our bearings. We were back into our regular routines, but were also catching up from 6 months of our lives being entirely disheveled. 

When summer came, it was a breath of fresh air. With the hustle of homeschool behind us, I felt like I finally caught my breath. The long, slow days together were just what we needed. And, with Ramona being stronger and having more endurance than she did before her surgery (praise the Lord!), she has been able to ride her bike and play with her siblings more than she could before. 

We did run into one hiccup a few months ago, which was the discovery of a ventricular septal defect (a hole/passage between the ventricles) during one of her echos. This defect (VSD) has never showed up on any of her previous tests, which was puzzling. Our doctors best guess is that it has always been there, but the muscle of her heart was so thick they just couldn't get to where they could see it before. Maybe removing of the muscle has given them a better view. But, whatever the reason, it was pretty disappointing to find out about this issue. We were so grateful to have made it through so much... just to find out about another problem. *sigh* For now, her heart is keeping everything flowing correctly, but they will continue with checkups every few months to keep an eye on it. 

The thing about this condition is that, short of a miracle, there is no finish line. No moment where you've truly made it and everything is fine. Even a transplant is not a cure. You are always waiting for the next thing to happen.

But, when we were living at the hospital and I couldn't bring myself to ask for a new heart, God have us the unexpected opportunity for this surgery. Ephesians 3:20-21 says "Now to him who is able to do immeasurably more than all we ask or imagine, according to his power that is at work within us, to him be glory in the church and in Christ Jesus throughout all generations, for ever and ever! Amen." He gave us more than we could ask or imagine, and we give him the glory. 

We REJOICE in where God has brought us and what he had brought us through, and we CELEBRATE the milestones as we remember what he has done for us - not just here on earth, but for eternity. "What is our only hope on life and death? That we are not our own but belong to God." 

Prayer Requests: 

- thanks that we made it out the other side of recovery

- thanks for God's goodness & provision

- that her heart will hang in there for many years to come

- that her heart will be healed

"Every good and perfect gift is from above, coming down from the Father of the heavenly lights, who does not change like shifting shadows."

- James 1:17 -

Going home (6 days post-op!)

We are going home! Just 6 days post-op, Ramona is doing great and we have been discharged! She definitely still has some major healing and recovery to do, but we are so happy to be able to go home!

We will be lying low for a while so we can be careful to follow her sternal precautions and restrictions for the next few weeks. We will also have several trips back to Lurie in the coming weeks for follow up appointments, and hopefully cardiac rehab. 

It's just unbelievable how much she has improved each day since her surgery, and we are so looking forward to her continued progress. She has had some really, really hard days, but, by God's grace she has made it through and each day is getting better. Thank you, Lord! 

I'll try to do a post with more details about her surgery later, but, for now, rest. 💕

Prayer requests: 

- rest

- healing

- that her chest won't feel itchy (she has been bothered by this much more than by any pain) 

- that her adjusted heart will work wonderfully 

- for Marshall and the other kids waiting for hearts 💕

Post-Op Day 2

Hi there, I just wanted to report that Ramona is doing well. Her surgery on Thursday went as well at we could have hoped. They were able to complete her myectomy (removing some of the extra muscle inside her heart) and change her pacemaker out for a different model that includes a built-in defibrillator. They had backup plans (and people) on stand-by due to the risk of certain complications from the procedures and from the anesthesia, but everything went according to their "plan A." It was a long day, and she came out of anesthesia quite feisty, so they gave her a sedative to help keep her calm through the night. 

Yesterday (Friday) she was still pretty out of it most of the day, and her team was busy balancing fluids, tweaking/weaning meds, and doing various tests to check all sorts of things. She started struggling with nausea and was just pretty miserable overall. She slept very poorly last night, and I think a lot of that was due to her being upset about all of the various things she is attached to - multiple monitors, multiple IVs, and a chest tube. Besides the IVs in her arms and leg, she also has a central line right where her neck meets her shoulder, which she doesn't love. 

After that rough night, she started today pretty miserable, too. She was still dealing with nausea until around noon, and also had more pain today than yesterday. But, this afternoon she was feeling well enough to get out for two nice slow walks. (Not feeling great, but much better than she had been.) For the first walk she just made a lap around the unit (which was much more than we were expecting her to be up for, given how she'd felt in the morning), and for the second walk the nurse took us down to the 15th floor so we could bump into her buddy Marshall. She was pretty happy about that :)

Ramona is still pretty puffy from all the extra fluids she had to get during and after surgery, and she is still pretty quiet and lethargic, but the doctors say that she is doing great. We're hoping her chest tube will be able to come out soon, which they say will really help improve her pain and discomfort. I'm hoping she'll start feeling and acting more like herself after that, too. We haven't seen her friendly, happy, silly personality since Tuesday. She's asleep now, and we're also hoping for a much more restful night, especially after her excursions today.

These post-op days are some tough stuff. But, overall, we're just so thankful for how smoothly her procedures went and how well she is doing. 

Prayer requests: 

- thanks for her surgery going so well, and for God's continued provision

- for a restful night tonight

- that she'll feel better and more like herself

- that she'll be able to eat and drink more tomorrow

- that this surgery will allow her heart to serve her well for many years to come

- for Marshall to get his perfect heart soon 

"The cords of death entangled me,

the anguish of the grave came over me;

I was overcome by distress and sorrow.

Then I called on the name of the Lord:

“Lord, save me!”

The Lord is gracious and righteous;

our God is full of compassion."

- Psalm 116:3-5 -

Myectomy Tomorrow

Just a quick update to say that Ramona is slated to have her myectomy at 8:00 am tomorrow (September 5). We'd appreciate prayer for all of the doctors and nurses involved, for a smooth surgery and recovery, for this surgery to have a positive impact for many years to come, and for Ramona (and all of us) to have peace knowing that God holds her in the palm of his hand and works all things together for good.

Thank you ❤

The Lord bless you and keep you;

the Lord make his face shine on you

and be gracious to you; 

The Lord turn his face toward you

and give you peace.

- Numbers 6:24-26 -

Major Change of Plans

We have had a sudden, surprising change of plans. (Apparently that is just the way we do things.) 

During Ramona's transplant evaluation earlier this year, we had asked if there were any other surgical options for her other than a transplant, and we specifically asked about the possibility of a myectomy, which is an open-heart surgery where they essentially carve out some of the extra muscle inside the heart. We knew that this is sometimes used as a treatment for her condition, but it was always iffy if it would be an option for her due to the severity of her case. At the time of her evaluation, they said she was not a good candidate for it. (It is most often used when just one part of the ventricle is thick, and hers is (very) thick all the way around.)

However, now that they have had time to get to know her and her heart, they decided to get a second opinion from another hospital that has more experience doing myectomies on hearts like hers. They sent all of her scans and information to them, and that hospital confirmed that they think she would be a great candidate for this surgery! The expectation is that this will improve her heart function and lower the pressure in her heart and lungs. (They also want to upgrade her pacemaker to a model that includes a built-in defibrillator as an extra layer of protection.) She would probably still need a transplant in the future, but, the hope is that this would help her feel better and buy her some more years (hopefully many more!) with her own heart. Transplants have a limited life and come with their own complications, so the longer we can keep her own heart, the better!

So, all that to say, Ramona has been moved to the "inactive" transplant list for the time being, and it sounds like they expect to get her in for surgery within the first few days of September. AND, as if that isn't surprising enough, she's been so stable since we've been here that it sounds like there is a chance she might be discharged to go home for a couple of weeks until her surgery. So we're eager to see how that will pan out. 

It's been a wild day. To suddenly have a non-transplant option before us is just...wow. We're feeling very overwhelmed and very grateful. 

Speaking of being grateful, while this season has been so stressful in so many ways, Nathan and I were just talking about how we have had absolutely no stress in regard to things like feeding everyone, paying for gas/parking, finding things for the kids to do or play with, or being able to get random necessities as things pop up. Literally every need we've had has been met, and met abundantly. We have so many people to thank for meeting our physical needs, for encouraging us and building us up in love, and for praying relentlessly for us. 

And then, a new surgery option on top of all of that. I recently read a quote that said, "All this, and heaven too?" and I just keep thinking that over and over tonight. 

Here's how you can continue to pray for us in the coming days/weeks:

- continued wisdom & skill for the doctors as we pursue this new plan

- continued protection for Ramona whether we're here or at home

- for a safe and successful surgery when the time comes, and that it would yield wonderful results that carry her for many years to come

- thankfulness for God's unwavering faithfulness through all the highs and lows of life, so much more than we could ask for or imagine

- please also pray for our best bud Marshall and our other friends here that are waiting for new hearts, too ❤️ 

 "But God shows his love for us in that while we were still sinners, Christ died for us."

- Romans 5:8 -

3 1/2 Week Update (No big news)

 

It's crazy to think we've been here almost 4 weeks so far. We are just plugging along, with not much to report. I’ll list a few highlights (and lowlights) for those wondering what we’ve been up to:

- We finally got a Ronald McDonald House room! Our address there is: 
Nathan Barr

Ronald McDonald House

211 E Grand Ave., Room 1007
Chicago, IL 60611 
It’s been good to have the other kids up here the last several days. It's a different kind of hard to juggle all the people, but we're thankful to be able to be together and for Ramona to see her siblings regularly. We're hoping we'll get into a routine that will make us feel less scrambled, especially as we balance Nathan working remotely and our homeschool year starting.

- We moved rooms at the hospital. They have overflow from the cardiac floor in some spare rooms a couple of floors down, and they move their stable long-term patients down here when they run out of space upstairs. Ramona was super excited to move, because we ended up right next door to one of the friends she has made here! It’s also MUCH more laid back and quiet down here. We were sad to lose our bathtub and great view, but it’s really been a good move for us.  

- Our days are pretty quiet from a medical perspective. She gets vitals and meds at set times each day, but other than that it's labs on Mondays (the worst) and an echo once a month. She also needs to get a few vaccines before transplant, so they're trying to get those done, which has possibly been worse than labs. I generally feel like we’re doing pretty well...until it's time for a poke. Then it’s misery and I cry for home and heaven. I have never longed so deeply for the wholeness of heaven as I do in this stage of life.

- There are a lot of fun things to help pass the time during the week. Ramona especially loves playing Bingo twice a week, but there are also crafts and activities, art therapy, a play room, video games, trips to the cafeteria, etc. They also have special events, like “Lurie-palooza,” dance troupes, and magicians. She has also really enjoyed the thoughtful care packages that have been sent our way.

- We recently celebrated her big sister's birthday, and Ramona spent days preparing for it. Almost every craft project she made was made with Daisy in mind - some as gifts and some as decorations. She used her batik dye project to make a banner to hang up, which was particularly beautiful. She wrapped the presents she made in paper towels, and used pipe cleaners to make little dolls and hearts for a party game she made up. The night before we celebrated, she made a list of everything she needed to do or set up in the morning before they got here. It was all just so precious. She loves her family so much. 

That pretty much sums up what we've been doing. As far as HOW we've been doing, this is just a really hard season. So much to juggle. So many feelings (from so many little people). I just continue to pray that God will work all things together for good, and that his abundant grace will cover all of our short comings. I don't know what people do without the hope we have in Christ, because I would be lost without it. Overall, I would say we’re doing better than I would have expected, and I don’t doubt that that is because we are so faithfully covered in prayer. 

We also want to say thank you again to those who have reached out to us in any way. Whether a text, card, care package, etc. we appreciate it! For those who have been wanting a way to help, we are pretty limited on space here, but small items, gift cards (see list below), or money for parking, food, and other expenses would be great. (*Please don’t feel like you have to do anything, but those are what would be the most helpful to us if you are interested.) If you are wanting to provide a gift card, here are the stores/restaurants that we can walk to easily from the hospital and RMH:

Marshall's

Amazon (not a place we can walk to, but we can have necessities delivered)
Whole Foods
Trader Joe's
Walgreens
Chick-fil-a
Subway
Starbucks
Dunkin Donuts
McDonalds
Taco Bell

Again, no pressure to send anything, just wanted to let you know what we could most easily use. :)

Thank you for continuing to cover our family in prayer. Please continue to pray for healing, for wisdom for the doctors, for God’s timing, and for all of us to love each other well in this challenging season. Even though we are here waiting for a heart, I can’t bring myself to ask for one. Knowing that us getting a heart means that someone else is losing a child…I just can’t. I continue to pray that God will continue to watch over her as he has faithfully done throughout her life, and that his good plan for her will come to pass.

But he said to me, “My grace is sufficient for you, 

for my power is made perfect in weakness.” 

Therefore I will boast all the more gladly about my weaknesses, 

so that Christ’s power may rest on me. 

- Romans 12:9 -

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 otherwise. It’s been pretty quiet from a procedure/testing standpoint. She’s being monitored, and we’re just trying to pass the time and make the best of it. We’ve been going to the play room when we can, playing with toys in our room, reading, drawing, doing laundry, and whatever else we can come up with to pass the time between assessments and meds…which is exhausting in it’s own way. But I’m very thankful that we are (at least for now) able to leave her room. Not that there are a ton of places to go, but it’s much better than being completely cooped up. They had some tie-dye projects set up for the kids to do today, and she absolutely loved that. We can’t wait to wash them out tomorrow and see how they turned out. Between that and getting to eat in the cafeteria, she described today as a great day, which is good.

Between not getting enough sleep, being away from home/family, being tied to a monitor, and constantly wondering if you’re about to get poked, it’s just hard on a kid. And we haven’t even been here a week yet. They are also trying her on an oral medicine to see if that has any impact on her echos and ekgs, which she does not like at all. Thankfully she is tolerating it better with applesauce, because she has to take it 3 times a day. Oh, and she has to get blood drawn tomorrow, so we’re praying they’ll be able to draw back through her IV so they don’t have to poke her, which is just the worst. 

I don’t expect there will be much to share updates about for a while. It sounds like it’s going to be pretty repetitive days for a pretty long time.

PRAYER REQUESTS:

- Rest/sleep (this monitor is being especially noisy tonight)

- For her IV to work for her blood draw tomorrow

- For joy even when things are hard

- Healing and God’s timing

- for our family to be together soon

- Opportunities to share the hope we have

“I will remember the deeds of the Lord; yes, I will remember your wonders of old. I will ponder all your work, and meditated n your mighty deeds. Your way, O God, is holy. What god is great like our God? You are the God who works wonders; you have made known your might among the peoples.” - Psalm 77:11-14

Just when you think you have a plan…

Well, we thought we had a plan for Ramona. Once her test results were finalized and her transplant team had a chance to thoroughly review her case, the doctors decided that there were no surgical options (other than transplant) that Ramona would be a good candidate for, so they are definitely in favor of putting her on the transplant list. Her doctor said there are two options - (1) put her on the 1A list (highest priority) immediately (which would mean admitting her to the hospital now and putting her on an IV medication to help her heart relax while she waits for a transplant), or (2) put her on the 1B list (lower priority and she would wait at home) for the summer (during which time they would follow her very closely with appointments every few weeks) with a plan to redo her cardiac cath in October and the expectation that they would bump her up to the 1A listing and admit her to the hospital at that time. (Phew, that was a lot of parentheses.)

As of last week, the doctors were comfortable with having her wait at home for the summer, with the understanding that if anything happens, or if anything is off at any of her follow-up visits, they would recommend admitting her earlier than expected. So, with that plan in place, we signed the consent forms to add her to the transplant list last week. Once the papers are signed, patients are usually officially on the list within the next 2 weeks or so. 

Then, today, Ramona basically passed out while the kids and I were out of town visiting family. Nothing like that has ever happened before. I caught her as she fell, and it was so scary to hold her limp in my arms. Fortunately, we were very close to a big children’s hospital in Indianapolis, so we took her there. From there, she and I got an ambulance transport up to Lurie’s in Chicago, and Nathan met us here. They are going to keep her here for observation for a while. It sounds likely that they’ll bump her up to the 1A list while we’re here, but everything is up in the air (again) at the moment. But, it does sound like we’ll be here for a while. Once they have a few days/weeks to observe her, they might decide to down-grade her urgency on the list for a while, or we might just be here to stay. 

Getting ready for transport to Chicago.

View from her room on the 22nd Floor

But, no matter where we are or how she’s listed, the doctor stressed the importance of understanding that a transplant could happen at any time. There’s just no knowing when things would line up for her. It’s hard to wrap our heads around the uncertainty of it all. The doctor said that sometimes it has worked out for kids to get a heart within a couple weeks of being in the list, and other times kids end up waiting in the hospital for a year or more. It sounds like the average wait is generally a few months, but you really just never know. 

Also, we’re on the waiting list for the Ronald McDonald House, so hopefully we can get a room there and get the other kids up here soon. We’re just playing that by ear along with everything else.  

Also also, I just want to take a moment to say thank you to everyone who has so graciously and generously been there for us the last few weeks (months?). Whether it’s juggling kids, gas money, snacks and activities to take to appointments, a place to stay overnight, a meal, decluttering my house (and with it my mind), sharing an encouraging word, or quietly battling for us in prayer, we are so thankful for your help, support, and encouragement. I have a lovely pack of thank-you cards at home and the best intentions of using them, but it just hasn’t worked out so far in this hectic season. So, please just know that we sincerely appreciate every kind word and deed. THANK YOU!!

PRAYER REQUESTS:

- I honestly don’t even know how to sum them up at the moment. I guess just all of our little people in all of their places. Wisdom for doctors. Healing. Thankfulness that God will work all things together for our good and His glory. A minimal amount of “pokes” (IVs, blood draws, etc). Hope & joy. Everything else.

And we know that in all things 

God works for the good of those who love him, 

who have been called according to his purpose.

Romans 8:28

Follow-up this month

Sorry for the radio silence the last last few weeks, but there hadn't been any new news to share. We spent the first half of May finishing up appointments with various specialties, and then we've been waiting to hear what the plan would be moving forward. 

Our cardiologist at Lurie's called yesterday, and, of course, it was when I was in the midst of a self-checkout with children melting down all around me. 🤣 But anyway, she said she wants us to bring Ramona up for a follow-up appointment on June 11. Ramona will have her usual echo and ekg, and it sounds like we'll sort of get the final input from some of the doctors on what they think we should do. 

I asked if we should plan/pack as if we'll be there a while, and, at the moment, it sounds like we should expect an outpatient visit. It also sounds like they might be leaning toward possibly listing her at a lower status with her waiting at home at least to begin with, but we really don't know yet.  Everything is so uncertain and flip-floppy, so  we will continue to hold our "plans" loosely and see how the chips fall. Because I am who I am, I will be doing some excessive packing and prep work at home before the 11th, just in case. :)

I think that's it for now. Ramona continues to be in good spirits and is still her sweet, helpful, and hilarious self. We continue to pray for the doctors to have wisdom in what is the best plan for her, for us to steward our family well, and for healing for her heart. ❤️

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 cath, but she was pretty sleepy and snoozed through most of it. The procedure itself went smoothly. Due to the high risk a cardiac cath poses with her condition, they had several precautions in place in case they ran into any complications (including having a surgery team with an ECMO [heart & lung machine] waiting in the hallway). Thankfully, the procedure went off without a hitch.

 Unfortunately, though, the test results were not what we were hoping for. Her condition can cause the pressure inside her heart to rise, which can also cause increased pressure in her lungs. Unfortunately, both of those are high, in addition to heart not functioning (contracting & relaxing) as well as it used to. 

The doctors feel that it is definitely time to list her for a transplant. And then things got confusing.  Initially they were going to admit her until Tuesday, which is when the transplant team would meet together as a whole and decide the urgency level at which to list her. But, now they’re sending us home today for the time being. They said it will take a few days to get all of her lab results in, plus some of the consults that need done can’t be done on the weekend anyway. Then, once they can get everything finalized, they’ll meet and determine the level of urgency to list her at. The doctor said he thinks this is what will take the majority of the time when they meet.

There are three levels of urgency: 

— 1A is the highest priority, and children listed at this level live at the hospital until they receive a transplant (which could be weeks, months, or more).

— 1B is second priority, and these children could be at the hospital or at home, depending on their needs.

— 2 is the lowest priority and waits at home.

Based on what we’ve heard so far, my feeling is that she’ll probably be listed at 1A, but we won’t know for sure for at least a few days. But, we’re glad they feel comfortable with her going home at the moment. None of us had been expecting a long admission right off the bat, so we’re thankful it works out for us to regroup (and repack). We have a lot to process and a lot of logistics to figure out. We were able to get a room at the Ronald McDonald House last night, which was a blessing, so hopefully that will work out again when we return. 

We had a few really hard times, but overall, Ramona in great spirits during this admission. She was upset when she almost had to get a poke this morning, but her diligent nurse was able to get blood through the IV she already had in (thank you, Lord!). Other than that, Ramona has been cheerful! She even said, “This has actually been pretty fun!” at one point (as she was watching YouTube, ordering ice cream with supper, and being waited on hand and foot 🤣).

One funny thing is that the head transplant doctor told us today that there are two groups of trouble makers at the hospital - dads and grandmas. And it’s funny because it’s true! 

I also need to give a shout-out to Mimi for helping with Dottie up here the last few days, and to Papa and Grammy for tag-teaming and juggling the other kids at home. We’re fortunate to have wonderful families! Thank you, also, to the people who have reached out to us the last few days, even though we haven’t gotten back to most of you in all the chaos. We appreciate your love and support. ❤

Getting some more pictures. 

Living her best life visiting sister! 

Game time! 

A Busy Week in Chicago

 

Crazy cotton candy after her
appointment on Monday. 

After having to reschedule a couple of times for various reasons, we've got a busy week at Lurie Children's Hospital this week for Ramona. We drove up for the day on Monday to meet with a doctor who is only in the office on Mondays, and we headed back up again today. We'll be in meetings with various doctors/specialties all day tomorrow (Thursday) - from 8:00 a.m. to 4:00 p.m. Then, on Friday she'll have some testing done with a cardiac cath. 

We're anxious to see what the doctors here think and what they'll recommend going forward. 

The Ronald McDonald House is already full tonight, so we couldn’t stay there this time. But, Uncle Jesse is letting us stay with him instead, which isn’t too far from the hospital, and includes Bluey and popsicles!

We'd appreciate your prayers, especially in the following areas:

- for us to understand and remember all the information we're going to get tomorrow 

- bravery for Ramona, as she will be under anesthesia Friday, which has made her pretty anxious in the past

- safety during her testing & anesthesia

- clarity and wisdom moving forward

- healing

Thank you for praying for and caring for our sweet girl and our family!

Do you not know?

    Have you not heard?

The Lord is the everlasting God,

    the Creator of the ends of the earth.

He will not grow tired or weary,

    and his understanding no one can fathom.

29 

He gives strength to the weary

    and increases the power of the weak.

30 

Even youths grow tired and weary,

    and young men stumble and fall;

31 

but those who hope in the Lord

    will renew their strength.

They will soar on wings like eagles;

    they will run and not grow weary,

    they will walk and not be faint.

Isaiah 40:28-31

Aquarium at Lurie's 

Ramona took lots of pictures of the city.