Our 20 week ultrasound was not a happy day full of pretty pictures, but instead the start of a long journey to address a critical congenital heart defect. Follow along by reading our Journal.
These journal entries make the most sense if you read them all, from oldest to newest. If you haven’t already, we encourage you to read from the first entry, “A Turn of Events.”
Happy 2024!
I am writing this on January 2. Surprise, surprise, life with two small kids gets pretty busy around the holidays. With the additional end-of-year required work for our small business that Dave and I own, this is the first we are getting around to this letter. We don’t think we will be writing a letter next year.
This has been a year unlike any other for us. During this year, Cassie was the same age that Kate was when she was getting really sick, ended up in the hospital for five months, and got her heart transplant. It brought back many memories, while at the same time being completely different.
This is the year where Cassie went from being sweet, easy going Cassie to “I am a toddler. Hear me roar!” It became very difficult to do things with her. Especially after she started walking in the spring, all she wanted to do was run around and explore. That put a damper on things like baseball games, restaurants, and taprooms
Cassie has grown like a weed. Today she is 20 months old. She has been wearing 2T since the summer. Her pajamas are 3T. She can climb on just about anything in the house, including the bar stool height stools near the kitchen. She has taken to not holding on to anything as she walks up the stairs. At less than two, she has the complete run of the house. Just this past week we saw that she can climb out of her crib whenever she wants. Luckily, she hasn’t done so yet. I hope she can stay in a crib until she’s at least two years old.
Cassie is exceptionally verbal. She regularly talks in three to five word sentences. I think the highest I’ve counted is an eight word sentence. Her singing is also completely on pitch.
Kate is doing great this year. Her development and skills have continued to soar. Although she is still in physical therapy, speech therapy, occupational therapy, family therapy, and food therapy through Fraser, she is closing the gap between herself and “normal” peers. She attended her cousin’s 6th birthday party at a trampoline park, and she held her own with all the other kids.
Kate’s one exception is eating. She has decided that is overrated. She gets 99% of her nutrition through her g-tube. I am fine with that for now. Her growth is good, and we don’t have to worry about picky eating. She’ll eat eventually.
School has done amazing things for Kate. She started the year in three-year-old preschool two hours a day, four days a week. It was a special-ed small group class, with four to eight students. In the fall, she started pre-K for two and a half hours a day, five days a week.
Her class is really cool. She is in a “Peanut Butter and Jelly” classroom. The Jelly room, her home base, is all special ed, with up to eight kids and the extra adult helpers. The Jelly room is paired with the Peanut Butter room. The Peanut Butter room is the school district’s standard “normal ed” pre-K class, with up to twelve students and fewer adult helpers. The kids can go back and forth between the rooms, and often the two rooms come together for a large group of twenty. I think it is a great ramp up to kindergarten with 18-28 kids. Kate is bussed both to and from school, with pick-up at the end of our driveway.
Because of school, Kate’s ability to wait in a line for what she wants is amazing. She has more patience than both Dave and I if she wants something, like to race at the Science Museum or the Trick-or-Treat line at the Eagan Halloween Party.
With the daily grind, it feels like we don’t do much. It is challenging with little ones. However, our pictures show a different story. We like to do things locally. Here’s a quick list of things we’ve done in the past year: sledding twice, the Luminary Loppet, the Ice Castle, the Circus, Kate raced Goldy’s Run, the Fulton Gran Fondo bike ride (25-mile Piccolo version), the Fraser festival where we got a free toddler chair, a spring Twin’s game, but an August Saints game proved too much for Cassie, we supported a friend during the FANS 12 hour race, weekly Cascade Bay Little Mates followed by Puppets in the Park, Lake Nokomis beach a few times, Kate did a bike race on her balance bike, a 4th of July family bike ride, the kids’ first real haircuts, Team Kate Race for the Kids, Halloween race fiasco, the State Fair, Sever’s Fall Festival, the Renaissance Festival where the whole family dressed up including two little fairies, two Halloween events, Trick or Treating for hours, Nickelodeon Universe, and joining the YMCA mainly for the pool. Swim lessons start in a week and a half
We did manage to do a few trips this year. We went up to Duluth in June and hit Jay Cooke State Park on the way home. Both kids went into Lake Superior, even though it was freezing. We did our first family camping trip at Lebanon Hills Regional Park, a whole mile and a half down the road. We almost aborted at 2am, but managed to figure it out. It was worth it. We started a tradition by going back to Grand View Lodge in Brainerd for a few nights. We had a private pontoon ride, which worked out for the best since we cut it short. We also went back to Duluth in December for the Bentleyville lights plus Santa and his live reindeer. We learned from last year and had a much better time, even though the kids didn’t want to sleep.
Dave and I are hanging in there. Kate changed schools this fall from the early education center to a real elementary school. With a bigger school came bigger bugs. The whole family has been sick again since September. Although fevers were few, the constant coughing, congestion, runny noses, and bad sleep takes its toll.
We would love to see more people. We actually found a babysitter this fall. We can get away for a few hours every weekend. Holy cow! What a luxury after four years. We are open to meeting up with people during that time. We are also open to seeing people with our kids, if that’s what you’d like. Drop us a line and we’ll figure something out.
Here’s hoping 2024 is a wonderful year for everyone, full of growth, love, and fun.
Sincerely,
The Royers – Dave, Audrey, Kate (4), and Cassie (1)
PS: Here’s some more photos from the year!
PPS: Here’s more that didn’t fit on a single sheet to get mailed out with our cards. If you noticed, we didn’t mention a thing about Kate’s heart status. Three years post transplant, she is doing great. Her drugs have stayed stable at one prescription drug that she will be on the rest of her life, and one over-the-counter supplement. Her follow-ups are purely routine. Her heart stuff is merely the background of life. Her autism is what creates challenges day to day.
I also intended to share a bit more about Kate and Cassie together. This is the year where Kate went from holding Cassie to playing with Cassie. Cassie loves her big sister, and wants to do everything that her sister does. They have a pretty typical sibling relationship right now. Sometimes they love each other; sometimes they fight and scream. I feel blessed that we were able to have them close enough to play together.
Have a great 2024!
Yes, we are posting this late, and out of order. By adding this, we add to the continuity of the story presented here. Sorry if this gets emailed out to you. I hope you are not too confused.
2022 has been a year of change. We spent the first quarter changing the house in preparation for the baby. The office became the baby’s room. The downstairs junk collection of 17 years had to be cleaned out to become the office and a secondary play space.
On April 3 at 12:08 am, we welcomed Cassie June Royer into the family. The birth was peaceful at the Minnesota Birth Center. She weighed 8 lbs 0.5 oz and had a huge Royer head. A healthy mom and baby were home five hours after the birth, at 5am. At 9am, a sleepless Dave took Kate to her first running race at the U’s stadium, finishing on the 50 yard line.
Two weeks later, on the day after Kate’s third birthday, she started school, complete with taking the bus all on her own. Back in December 2021, Kate was officially diagnosed as autistic. That qualified her for the school district’s special education preschool when she turned three years old. At first, it was 75 minutes a day for four days a week. In September, that increased to two hours a day, four days a week.
Kate’s therapies completely changed over to Fraser this year. Fraser is an autism and special needs center. She now receives speech therapy, physical therapy, occupational therapy, and food therapy all through Fraser. The therapists are wonderful and Kate loves it.
Between school and Fraser, Kate’s skills have exploded this year. She is currently a motor mouth with a reasonable vocabulary and new words every day. She can now jump and is getting faster, even though she still doesn’t have a real run. She is potty trained and can dress herself with prompts and minimal help. She is still g-tube dependent, but has all the skills to eat and eats up to 30% of her daily calories by mouth.
Cassie has grown and developed so fast. At six weeks, she was wearing six month clothes. Now, still at eight months old, she is in 18 month clothes. She crawls all over the house. She can climb our entire flight of stairs by herself. She pulls up to stand. She has started to cruise around the furniture. And she is a great eater. A mobile, eating baby is a completely different experience for us.
With Kate in school, she brings home lots of germs. The whole household has had numerous colds since April. Luckily, the kids have only had one fever a piece. Neither were much of a concern. A healthy baby is a completely different experience for us.
Kate is two years post heart transplant. She’s had the new heart longer than she had her own. She is doing wonderfully. In February, she had a small surgery to remove her broviac central line (a long term iv). It was her 12th time under anesthesia that ended 32 months of iv lines. We were also able to drop more meds this year. Now, she is only on two drugs, twice a day. Only one of the drugs is prescription. Holy cow, what a change.
Our fun activities changed to be a bit more tame this year, considering the needs of a newborn and a preschooler. We did get out sledding, attended a few Run Beer Repeats with Cassie, hit a few tap rooms with the whole family, ran two 5K races, and went to two Twins games, the Eagan 4th of July Festival, and the State Fair. Hope Kids had some great events we attended, including an Easter celebration when Cassie was six days old, a Royal River Cruise on the Mississippi, a fall festival, a trunk or treat event, Nickelodeon Universe where Cassie rode her first roller coaster at seven months old, and the final dress rehearsal of the Nutcracker. We took two hotel trips this year. The first was in July for a family wedding. We spent two nights in Mondovi, WI and two nights in Brainerd, MN. In December, we spent an overnight in Duluth for the Bentleyville Christmas lights.
On the business side, 2022 has also been a year of change. You may remember that we own and run our own small business, Climbing Penguin Inc. Last December, our tax guy of 16 years suddenly retired. If you have any suggestions for small business tax people in the Twin Cities, we would love references.
In general, life is good, crazy, but good. We are very blessed. Dave says his biggest accomplishment of the year is staying sane with two small children. Audrey’s was running a sub thirty minute 5K race when Cassie was six months old.
We would love to get together with more people in 2023. Weekend afternoons work best for us. We are flexible to the location. Feel free to contact us with a particular date and place. Hopefully we can get together soon.
Wishing you well,
Dave, Audrey, Kate, and Cassie Royer
P.S. Here’s some pictures from the year.
It’s been exactly 1 year since Kate’s transplant. Wow, what a world of change we’ve seen. Recently, we’ve been looking at these journal updates from last year and looking at photos and reflecting on our time in the hospital last year. Wow, what a ton of emotions.
Kate’s doing awesome. She’s down to just her “maintenance” medications that she will be on for life. She’s found some therapists that are doing great work helping her make progress on the things she’s behind on. Even more than that, she’s laughing, playing and just having fun! It’s amazing to reflect back on last year and realize how bad she must have been feeling.
It’s hard to come up with words to share where my feelings are. We’ve said it before and can’t say it enough but thank you to everyone who supported us. From food, to visits in the lobby, to presents for Kate, and everything else. We really appreciated it and I don’t think we could have made it through without you.
If you want a recap of our journey, Audrey just finished updating the summary on the main page and it’s a great overview…maybe not short but much shorter than reading the entire journal here!
Now for some recent happy photos!
One final item.
Last year we shared lots of pictures and photos along our journey. There was a period immediately after transplant that we kept more private due to the severity of Kate’s condition. I still don’t think it’s finished yet but on the anniversary of her transplant date, I wanted to share a quick video of what Kate’s journey was from transplant through our discharge and a bit beyond. It’s a quick video with one second a day of at least one photo or video for each day starting just before transplant to release and beyond. It’s amazing to look back and see how strong Kate was through the whole process.
Warning that while there’s nothing overly graphic, there are lots of pumps, tubes and wires and a very sick 20-month-old.
Kate’s Recovery Journey December 2020 through the end of February 2021
It’s time for a quick update. We’ve been pretty quiet on updates lately. That’s a good thing!
Kate has been doing awesome and last week at Kate’s latest clinic visit we hit a great milestone! Kate is finally down to her long-term maintenance medications! It’s been 11 months since her transplant and it’s been a very long road but this is exciting! We started with 14 medications and 41 individual doses of medications for a day and now we’re down to 4 meds and 6 individual doses!
We’ve been thinking about last year a lot lately. Seeing the photos from our 5 months in the hospital brings back lots of emotion. It was a struggle and thank-you to everyone who showed amazing support to our family. Now a year later it’s amazing to see the difference in Kate. We can tell every day that she is much happier and enjoying life. More and more she’s a normal 2.5 year old and less and less a heart baby!
Here’s a collection of some photo highlights from the past few months. More soon…I promise!
Hi friends and family!
Sorry for how long it’s been since our last update. Early on, Kate’s Dr shared that you hear the bad stories posted online but not the good ones because people get busy with life. We can relate. Here’s an update of where we’re at currently.
We are now less than a month away from the 1-year anniversary of us going in to the hospital for the wait. Right now medically, Kate is very stable. We recently had a clinic visit with the director of the transplant team and Kate’s new heart looks phenomenal. Everything is pumping as it should and working well. That said, Kate is still on lots of medications and still technically in acute heart failure. This just means her new heart and lungs are still working on recovery from the pre-transplant state. Audrey and I were a bit disappointed by this news actually. It feels like a long time since transplant and we see how much is still affecting her. We are firmly a hockey-stick trajectory and are solidly in the flattening out phase.
Kate is firmly a toddler now. She’s finally starting to talk very small amounts. Simple words like momma and dad and she’s exploring other sounds but not much more. She’s still very good at communicating…she just uses lots of signs. Speech will come. She’s also running around like crazy. At the MN Zoo this week she was climbing all over a small climbing wall and doing amazing!
On the eating/feeding side, Kate only needs to be hooked up to her food 5 times a day for a total of just over an hour during the awake hours. With the loss of the iv meds back in February, she has tons of freedom and really enjoys it! We are still struggling a lot with food overall. So far Children’s Hospital has been a total failure on feeding assistance. Kate shows lots of interest in foods but needs some help working on things like chewing and swallowing. Hopefully we can find someone who can help soon. It’s been quite frustrating having everyone get this “deer in the headlights” look and say “that’s not my area”.
Activity wise, this Spring Kate attended an Early Childhood Family Education class with Audrey weekly this spring and she loved it! She had tons of fun interacting with the other kids and staff. Kate is clearly the silent observer. She LOVES “circle time” where everyone sits in a circle, sings songs and such. When she got to class, she would go up to the visual schedule and steal the circle time picture and walk around with it! She won’t participate though. She just sat and observed everyone else and she had an absolute blast with it. Audrey and Kate are making it to the local water park’s 1 hour of toddler time regularly. Kate is having tons of fun splashing, playing and observing!
Kate loves being back in the world. She occasionally gets to go grocery shopping with me and absolutely loves watching and helping with everything. She loves parks with playgrounds and will enthusiastically point them out to us and urge us to stop. She loves taprooms. All the people, dogs and everything! We were at one recently where we were seated outside next to a retaining wall. She moved a sizeable pile of mulch from the flower bed to the picnic table we were sitting at…one tiny handful at a time.
Kate is regularly bossing us around. She is bossing her special ed teacher around and she is bossing ECFE class around. All without words! She herself dragged her ECFE class from their scheduled nature area play time over to the toddler play structure she saw in the distance.
Kate is crazy picky on music. She has decided she is done with Trolls now and music from the Frozen movies is OK now. She was in a phase where she loved Fireball by Pitbull for a while but that’s over now. Today she was asking for some music that related to her baby doll but Audrey and I are still trying to figure out what the heck she is talking about.
We are finding that beyond the heart stuff, Kate is very sensitive to lots of environmental things. Noises, touch, new places, new people. More so than other kids. We’re seeing more and more indications that she may be on the autistic side. It’s been tough trying to find someone who can help give a formal evaluation…so far either they aren’t taking appointments or they are 18-24 months out! We are on a few lists and were able to get an initial “Rule-Out” diagnosis of Autism but that’s just preliminary. Why are we concerned about this? Primarily because we hope it will open up other support resources and allow us to give better direction to her therapists regarding what is appropriate for Kate and what is not.
Anyway, that’s the long and short of life lately. Here are a few month-by-month photo albums to check out and see what we have been up to.
Thanks for all the support! Sorry for the lack of updates. Life is crazy still and there is very little down time to sit and write.
And some more photos!
So what happened the other week? So much suspense! Sorry…in some ways life seems even more crazy than when we were in the hospital. We’ll take it though.
Here’s the story of our hospital overnight February 16th to 17th .
So Kate has had a long-term IV (called a Broviac) in her chest since she was 3 months old. This is for a heart-failure medication. She was on the medication 24 hours a day since before that line went in. A line lasting that long is unusual. Typically they break or aren’t needed any longer or something. Kate’s kept working reasonably though.
After transplant, Kate is still technically in heart failure. This is acute (temporary) heart failure rather than chronic (permanent) like before. It is a consequence of her lungs having to cope with her old bad heart. Now, her lungs are healing, but slowly. In the mean time, she in in acute heart failure.
Her new heart and lungs are getting better and better. We had been talking about slowly weaning her off the IV meds. We had taken the first step down and were about to take the second step, as her heart has gotten much better. Once we finished the IV med wean, we still want the broviac as Kate gets regular blood drawn for lab work. There are labs at least once a week, if not more frequently.
We had been having some trouble with her broviac for some time. We regularly had it stop drawing blood out and had to put some medication in it to open it up. The other week, when we put that medicine in it still didn’t open up. When we tried to flush the line to clear it out, a small leak appeared. That meant a trip to the ER to either get it fixed or determine a next step. It also meant we had to stop her IV meds.
Of to the Children’s ER we go at 7:15pm. I’ll spare you the details but dang that was a slow process. Ultimately they decided, yep, we can’t repair it. We had to be admitted overnight. We talked to the director of the transplant team and we decided to try staying off the IV medication to see how Kate tolerated it. Kate was a trooper, falling asleep at about 11pm after a COVID test, which was required before she could be admitted. At about midnight we were admitted for observation back to our old unit, the Cardiovascular Intensive Care Unit.
The next day, the transplant team got us on the surgery schedule to remove the old IV line and place a new one during a 10 minute surgery, not counting prep and recovery. All went well. Kate had an echo to look at her heart function after 22 hours without her IV med. All looked good. We were discharged about 24 hours after the problem first appeared at home! And without IV meds!
So that’s the saga. We weren’t excited to be back but it was fun for us and Kate to see friends and for staff and friends to see Kate again! Kate had a small crowd cheering her on as she walked independently. It was really fun to see Kate acting like a toddler without an IV line, and without a food line since she wasn’t allowed food before surgery.
In general, Kate’s doing amazing. Today (Sunday February 28th) is Kate’s first day in about 2.5 months without any prescription pain meds! We’ve been slowly weaning them off and reducing the drugs she gets. Kate is clearly not too happy today but after 24-48 hours we’re hoping she’ll be back to her normal self.
With no IV lines, we are working on her feedings, too. Kate’s still fed by tube 100%. We are working on getting her more used to a non-continuous schedule and are up to her being able to be completely disconnected for 20 minutes per hour. It’s fun to see Kate take advantage of no lines. Lately she has spent a good amount of her “free time” twirling around in circles!
Life is still crazy. There’s lots of daily medical stuff to do on top of dealing with a crazy almost 2-year-old but we’ll take it rather than being in the hospital. We’re looking forward to actually being able to see people and do more things outside!
Thanks for all the ongoing support!
Woo hoo! Back in the hospital tonight! (sarcasm)
Kate’s broviac iv line broke. Observation tonight then we figure out a plan tomorrow. Likely need to put a new one in. Grrr.
Hopefully a quick process. More soon.
Wow what a time! It’s been two weeks since we got out of the hospital on Friday, January 29th. We were in for 162 days. It was 47 days post-transplant and 31 days after Kate’s last open-heart surgery. Sorry for the delay in updating everyone but it’s taken a long while to feel like we are able to breathe.
Kate is doing great. She was crazy happy to be in the car driving out of the hospital! She is happier than she has been in a long time. She’s jabbering and chatting a lot…much more than in recent past. She has started walking in the past week. She has never really crawled and walked with assistance in the Hospital but now she’s taking off on her own and really enjoying it. She gets the biggest grin after walking across the room on her own! Other problems are winter clothes! Nothing fit when we got home! We had purposely not gotten anything recently as we didn’t need it in the hospital and didn’t know when we would need things and what season it would be. Luckily between amazon and REI we were able to get some good options and get a few days outside before the current bitterly cold set in.
Medically wise, we had two clinic visits since discharge. On our last one, when they did the echo of her heart function, her heart looked good for the first time in her life! It looked good enough that they are starting to wean the IV medications she has been on since she was 3 months old…this is HUGE! We are still on LOTS of meds. We are slowly weaning drugs but still have about 40 or so individual doses to give throughout the day and overnight. It’s tiring having to give meds at 3am daily but we should be able to wean off that in a few more weeks. Kate is getting physical therapy in-person three times a week and speech therapy once a week. We also have a nurse coming by twice a week for labs and to help with other assorted tasks.
At home we are struggling to get things back in order. Not really living at home for 5 months…only sleeping (and for Dave, working) takes it toll. We are still unpacking stuff from the hospital and trying to find new ways to organize a rapidly increasing toy and book collection. Our hospital process of doing laundry and having big piles on the couch doesn’t really work any longer! We suddenly find that we need to very quickly toddler proof things. It feels like we have to learn how to work with a toddler overnight!
Being home is a ton more work than being in the hospital was. We have to act as the formula lab to prep Kate’s daily feeds. We have to act as the pharmacy and prep all the meds for the day. We have to act as the nursing and provider staff to assess and manage her medical status daily and we still have to act as parents. Our day still starts early and ends late. We’ll take this though. It’s nice to be on our own schedule, managing issues ourselves without having to deal with the strict structure of the hospital and all the headaches that brought.
We want to send a huge thank-you to all the friends and family that have been supporting us. Being in the hospital for 5 months was a hugely stressful and draining experience. People sharing home-cooked food, gift cards for food delivery and all the other support really helped. Thank you so much.
We will keep sharing updates…they may just be a bit slower in coming.
Here’s a collection of recent fun videos
Wow! Things move fast. As long as all the medications show up today, we are going home today! Holy Cow! It’s day 162 inpatient. Monday we were still officially ICU status. Kate it running around like a normal toddler, she’s still weak and on tons of meds (see below) and we still have IV lines for now. That said, we get to work it at home rather than dealing with the frustration and headaches of the hospital!
It’s going to be a crazy day. My mind is racing. Lots to do but it’s exciting to think we may be at the end of this chapter! More soon.
It’s been 158 days for this hospital stay, 43 days since transplant, and 27 days since the RVAD came out. Updates have been slower lately as Kate has been getting stronger and better and she’s keeping us super busy!
Kate is doing much better lately. This past weekend she was regularly standing up in her chair and walking around with assistance. We are off all respiratory support as of Saturday so no more nose tube! Kate has been moving so much we quickly had to switch back to a crib from the more traditional hospital bed. She was rolling and moving around a ton. We are still weaning lots of drugs. She has a huge drug list but most of them have been transferred to oral (g-tube) from IV, which helps a lot. We are down to just 4 IV pumps plus her food pump on the IV pole so today we get to put the IV Pole Steering Wheel back on! Yay! We’re back in clothes today! We are officially off ICU status, and we don’t have to be constantly plugged into telemetry (heart rate monitor).
There’s still tons of frustration and poor decisions being made by the hospital. We’re at the point where we are just trying to focus our energy on defining and making progress on discharge needs so I’m not going to gripe here about this weekend’s “fun”.
It’s been very relieving to see Kate come back to herself. She’s laughing and giggling more than I think we have ever seen from her. She’s still not talking but is making more verbalizations all the time.
Overall it’s fun to start to see some brightness at the end of the tunnel. This time I don’t think it’s an oncoming train!
Check out some fun recent Kate Videos
