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Svea the HLHS Warrior, Lake City, MI (2026)

04/06/2026

Happy Easter from our family to yours.

03/25/2026

This week brought a really big milestone for Svea; she officially graduated to annual cardiology visits.

She had her echocardiogram yesterday and clinic visit today, and overall things look really good. Her heart function continues to look strong. She still has mild but stable tricuspid regurgitation and some leakage in the neo-aortic valve, which her team will continue to monitor over time. For now, she will remain on one heart medication to support her valves, along with aspirin as a blood thinner.

It is crazy to think we have finally reached this milestone. It means her heart is stable enough that her team feels comfortable seeing her just once a year!!!!

Svea did fairly well during the echo yesterday. She was definitely anxious, but we were able to work through it together and she handled it really well. A special shout-out to her Feel Better Friends doll, who accompanied her to the echo—the sonographer even gave Svea a probe to use on Dolly while she did her own echo! Kids like Svea face things that would make most adults nervous, and her courage never stops amazing us.

We also had a big win today—we finally got the sleep medicine labs drawn. The last time we attempted labs it took three tries to successfully get the blood, so we were bracing ourselves for another difficult experience. Thankfully today it only took one poke, which felt like a huge victory. There were definitely a lot of tears, but she was incredibly brave. She was very excited about the treasures she got to pick from the treasure chest afterward, and we made a celebratory ice cream stop on the way home to reward her for being so brave and courageous over the past two days.

On the home front, Svea recently started sleeping in her own bed in our room. Even though she’s in her own bed now, she still wakes quite a bit overnight and is still getting bottles during the night. We are slowly working on tapering that down, but it’s a very gradual process. With some increased pickiness lately, she’s actually been needing a bit more milk overnight again. From what we’ve been told, feeding progress with ARFID can ebb and flow, so we’re trying to stay patient and take things one step at a time.

She continues her weekly SOS feeding therapy sessions. Progress hasn’t been dramatic since our last update, but she is still getting valuable exposure to different foods and textures. With feeding challenges like hers, the process can be slow and non-linear.

Her feeding therapist also recently completed an articulation screening to see if Svea might benefit from some additional speech support. Her language skills are advanced and she’s talking so much, but sometimes it can still be a little hard to understand her. We’ll see what the results show and whether adding speech support would be helpful.

She is also starting to work on potty training. Progress is very slow because she has little interest right now. She would rather keep playing with her toys than take a break to use the potty, and she often doesn’t seem to mind if she’s wet or soiled. Any tips or encouragement for this stage would be greatly appreciated!

While we know Svea will always live with a complex, special heart and need lifelong care, moments like this remind us just how far she has come.

If you have any tips, tricks, or words of encouragement for feeding, sleeping, potty training, or just being brave little humans, we’d love to hear them!

02/06/2026

It’s National Wear Red Day!! If you are wearing red, we would love for you to share your pictures too!!

02/04/2026

Hi All!

Sorry I haven’t posted an update in awhile. My life has been incredibly busy with work. I hope it will begin to slow down soon!

Friday, February 6th, is National Wear Red Day in support of bringing awareness to congenital heart disease. We will be wearing red for Svea and all the families/friends who have been impacted. We would love to see your photos if you too decide to wear red! Share them in the comments below!!

We met with Sleep Medicine on January 15th. They ordered a sleep test and labs. We have yet to get the labs and the first available sleep study wasn’t until August 2nd. We waited nearly 6 months for this appointment and now we have to wait another long stretch for the test.

Svea continues to wake up roughly every 3 or 4 hours. The only way we can survive in our house is to give her a bottle so she will go right back to sleep. Yes, this has been affecting her daytime eating, but until her team rules out obstructive sleep apnea, they don’t want us to change it.

Honestly, it probably is behavioral as Svea has consumed the balk of her calories overnight since day 1. It’s something that has seemed impossible to break and still function for work. We do what works for our family. I was disappointed when I found out how long we have to wait for the sleep study, but at least it’s on the books.

If we find out nothing is structally causing her to wake up, we will be referred to a sleep psychologist to work on weaning milk and addressing her need for fullness to stay asleep.

Other than that, not much is new. Svea is loving her weekly SOS feeding therapy sessions. She may not be consuming a ton of volume when it comes to “normal food,” for nutritional needs, but she has made tremendous progress in her ability to “chew” and swallow thicker purees as well as the the variety of textures that she will attempt to chew and swallow. She has also become more curious about new foods (though she won’t always try them) and loves to help in the kitchen.

01/01/2026

Today, as we celebrate the New Year, we reflect on 2025 and say hello to 2026.

2025 was a year we will never forget.

This year held some of the biggest chapters of Svea’s journey, and of our family’s story. Svea completed the Fontan, a milestone that once felt impossibly far away. We walked through major surgery, recovery, follow-ups, and the emotional weight that comes with each step, and Svea showed us yet again what true strength looks like.

2025 also brought incredible progress. Svea aged out of Early On and does not qualify for special education preschool because she is caught up developmentally—a victory we once hoped for quietly and now celebrate proudly. Her medication list shrank from five heart medications down to two, a huge win for her growing body.

Feeding remains a struggle, but even here, 2025 brought meaningful milestones. Svea said goodbye to her feeding tube. While she still requires assisted feeding and faces ongoing challenges with eating, she has made real progress—learning to swallow some textured foods and increasing the volume she can tolerate.

This year tested our family in ways we never expected. We survived a major car accident, a terrifying moment that could have ended very differently. We also experienced deep heartbreak with a miscarriage so close to Svea’s surgery, a loss that will always be part of our family’s story.

Alongside the hard, there was light. Jason’s business continued to grow steadily, and I started a new job, giving us hope and forward momentum when we needed it most.

And now, we welcome 2026.

A year filled with healing, hope, and new beginnings.

In 2026, we’re looking forward to continued cardiac stability, positive follow-ups, and supporting Svea as she begins SOS feeding therapy.

But most of all, we are overflowing with joy as we prepare for one of Svea’s biggest and most exciting roles yet—BIG SISTER!!!

This heart warrior, who has overcome so much, will welcome a baby sibling in July, and we already know she is going to be the fiercest, most loving protector. Watching her step into this role feels especially meaningful after everything she’s endured.

We’re also looking forward to celebrating love as Svea’s oldest brother gets married, making 2026 a year full of family milestones and joy.

Thank you, 2025, for the lessons, the growth, and the resilience you demanded of us.

Hello, 2026. We step into you with hope in our hearts and gratitude for every single beat.

01/01/2026

What a wonderful holiday season 2025 has been. Svea and I are off to bed, so we wanted to wish you a happy 2026.

12/09/2025

We took Svea down to Ann Arbor for her annual neuropsych evaluation. It has been nearly a year and a half since the last evaluation and she has come so far. As a reminder she scored in the 3rd percentile for gross motor since she was not yet walking but then decided to take her first steps in that appointment. Today she was running up and down the halls, climbing the three stairs they had in the evaluation room and continually jumping off the last step. Overall she did a great job with the testing. It’s a long appointment for a newly three year old or for any toddler. There were some tests she refused to do and others she absolutely loved. She loved the visual tests of pointing to various objects and memorizing objects that she had to then pick out from a line up on the next page. She did not like putting animals back in their proper home or building towers with blocks. She could certainly perform both tests but she chose to be uncooperative. She definitely has a stubborn streak (not from either of us of course 🤣). We will have a phone call with the psychologist on Thursday to go over the results.

11/21/2025

I can’t believe this girl is 3 today!!! Happiest of birthdays to our precious little miracle. God has blessed us with such a kind, courageous, funny, strong, and brave beautiful girl.

You have come so far in your journey. From a baby fighting for your life, to catching up in motor delays, to a thriving toddler, we couldn’t be more proud of your strength and resilience.

Yesterday we had our final meeting with Early On to go over fine and gross motor test scores. Svea is average to slightly below average in some areas. Overall, the results prove our dedication to parenting and Svea’s fight to catch up has paid off. She no longer qualifies for services as she is considered caught up. What a testimony to the prayers you have poured into our little girl.

Feeding is still our main issue but, hey, she’s still off the tube and willing to keep at it. She’ll get there in her time. She did with her motor skills and she will with self-feeding too.

Happy Birthday Sweet Svea!!!!

11/01/2025

It’s been a while since our last update. Svea has been enjoying the fall, playing with friends, and keeping busy. Last week Svea had her first outpatient echo since surgery. The echo went better than I expected given her intense fear of medical settings post surgery. She was anxious, but she managed well. I wanted to give another shout out to Feel Better Friends for creating Svea’s doll. It helped. Plus the sonographer was amazing with her and actually made echo/EKG fun.

We met with her cardiologist the next day to go over results. He was pleased to report her function was strong and normal. She has mild tricuspid valve regurgitation and mild neoaortic leakage so she will stay on a heart med to support that. She has always had these two issues so it’s not anything new. The good news it has never worsened and tends to be stable.

Since her function has improved so much since February 2024 and has been stable post surgery, he feels it’s time to start weaning her meds. By the end of November she will be down to two meds (from 5). It’s a true testament of how far she’s come. He told us to enjoy this honeymoon period and we certainly will!

We are still actively working on feeding. It’s slow going and will require time. She’s still in weekly feeding therapy. Early on also comes to our home once a week to work with her.

I am now focused on planning her 3rd birthday. I can’t believe it will be here at the end of the month. If you are interested in coming to her party, let me know and I can share the details. For those of you who received an invite with a QR code, please note, it does NOT work. Her wish list can be accessed here: https://www.amazon.com/registries/gl/guest-view/30DH559304W5Y?ref_=cm_sw_r_apin_ggr-subnav-share_72WTGNA82TK2M8XKDMRM&language=en-US

09/28/2025

Svea had a very busy week and there is a lot to update on! The week kicked off with an ENT appointment on Monday. I had called the pediatrician to see if they could send a local referral rather than waiting until November to drive to Brighton. They were able to scope her only to find her adenoids were “unremarkable.” Although she hated every minute of the test, i was grateful we were able to save ourselves a trip downstate. Since her adenoids are normal, we will still have to meet with sleep medicine in January. I have to be honest, I felt both relieved and disappointed at the same time. I was hoping for answers to explain her relatively poor sleeping habits or possibly a physical factor that could help explain her refusal to swallow most textured food. At the same time, I’m happy everything is normal and that she will not need surgery to get them removed.

Tuesday we had a virtual visit with Svea’s feeding psychologist and dietitian. For the past couple of weeks, we had been mostly tube feeding her due to her being sick. Feeding was becoming more normal again in the days leading up to the appointment. To my surprise, they wanted us to pull the tube. I was a bit shocked and completely didn’t see that coming. So Tuesday afternoon the tube came out and has been out since.

Feeding is still a struggle. Svea now relies on us to spoon feed her all her nutrition. She didn’t tolerate the larger volumes on Thursday and Friday and vomited both days. We try to encourage her to spoon feed herself but she will only lick the very tip of the spoon rather than open her mouth and put it in.

To get enough calories we have to spoon feed the formula used to tube feed her. She will still only eat purees for nutrition. Regular baby foods only have 50-100 calories on average. She is so picky that it has to be store bought baby food. Thankfully she will take the formula by mouth as it has a higher caloric content. We add in baby food for snacks or something extra so that she can have more variety. Anything else she happens to swallow is a bonus.

Svea was consistently getting at least one tube feed a day to ensure enough calories. It also helped with emotional regulation in the evening on nights she just didn’t want to eat. Rather than fight with her and make her eat, I started tube feeding. It made a huge difference in her attitude. Now we are back to relying on whole milk again especially on those days she won’t eat enough.

Svea is loving having the tube out and for her sake I hope it can stay out. If she can maintain her weight, we will be able to keep it out. My only fear is that she starts having more negative experiences with food again. Please pray for her continued willingness to want to eat by mouth. So far she has been doing a great job even with the times she’s vomited.

Svea started in-person feeding therapy again. I need help advancing her swallowing skills. She had her first working session on Thusday. She has a new therapist while hers is on maternity leave. The new therapist was surprised at how skilled Svea is at spitting food out. On the bright side, I know she is making progress. A year ago Svea was learning how to chew food. Now she can chew just fine. It’s getting her to swallow chewed food that’s the challenging part.

On Friday we took Svea to her very first movie - Gabby’s Dollhouse! Svea is a HUGE Gabby fan so it was the perfect film to capture her attention. She loved the whole experience from chewing and spitting my popcorn to singing and dancing along.

This weekend we have been relaxing and having family time after a busy week. She is still loving her Saturday morning dance class and enjoyed some time at the beach yesterday evening.

That’s about it for now. Have a great week everyone.

09/13/2025

Svea started her second season of dance today. She moved up from the 1-2 year old parent-child class to the 2-3 year old dance alone class. I was so nervous she was going to be the class disrupter having never been to school or daycare and having such a strong and willful personality. To my surprise, she did great! I couldn’t have been more proud of my girl!! She was so kind and helpful to the other kids. She took it upon herself to pass out stuffies to all the kids who did not yet have one. She wanted to make sure everyone felt included. Plus she even sat down when her teacher asked her to. She had her two year old moments here and there but so did everyone in the class. She enjoyed the class so much that she didn’t want to leave.

She also started swim again this week. She can’t move up to the next level until she turns 3 so she is now one of the older kids. Babies as young as 6 months can take the class so it is getting a bit repetitive. Still she loved it. I put a floatie on her now so she can have some independence in the pool and doesn’t have to rely on me to hold her. She loves the singing and can now join the parents in singing aloud.

On the medical front, Svea came down with an ear infection that thankfully doesn’t require antibiotics. Her feeling under the weather has put a hold on oral feeding. We have done a little bit but ultimately ramped up the tube feeding. She was vomiting more from mucous build up and she just wasn’t interested in eating as much orally.

This coming week she starts in person feeding therapy again. Since she’s come home from the hospital, she hasn’t made a ton of progress swallowing textured food. She has been diagnosed with ARFID (avoidant restrictive food intake disorder) by the feeding psychologist stating she has sensory issues which causes her to avoid swallowing. So now she will see a SLP in person alongside the virtual appointments with the feeding psychologist. It’s a slow process but she’ll get there.

She is also scheduled to see ENT in November, neuropsych in December, and a sleep specialist in January. Hopefully the visit with ENT will help us eliminate the need for sleep. Svea snores, thrashes when she sleeps, and wakes up sweaty. The feeding psychologist wanted her to be seen by sleep medicine to rule out obstructive sleep apnea. I don’t think she has it because I’ve never noticed her stop breathing. I think her adenoids could be causing her to snore instead. Plus she breathes through her mouth from time to time. We know her tonsils are good since her pediatrician said so but you cannot see the adenoids so onto ENT.

That’s about it for now. Enjoy your weekend!!

Svea the HLHS Warrior

04/06/2026

03/25/2026

02/06/2026

02/04/2026

01/01/2026

01/01/2026

12/09/2025

11/21/2025

11/01/2025

09/28/2025

09/13/2025

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