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Svea the HLHS Warrior, Lake City, MI (2025)

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!!

08/10/2025

Today was our third Heart Walk. It was a sweltering hot day with over 600 walkers.

Each year, we go to support an organization that leads the way in improving lives like Svea’s. It’s always a bittersweet event—filled with so much hope, yet also a powerful reminder of the challenges children born with CHD face. Even more sobering is the number of lives lost far too soon.

I’m deeply grateful to be part of such a strong and supportive community. We are part of a family that never walks this path alone. No one ever wakes up and says, “I want to be a heart mom.” It’s something that enters your life unexpectedly. You learn to adapt. You rise to every challenge—because there’s no one more worth fighting for than your own child or someone you love deeply. You learn to lean on strangers who become family because they understand exactly where you are because they live it too. There is no judgement when you lose your sanity - instead an ear to listen or a shoulder to cry on.

There are no guarantees when you're living with a life-threatening illness. Today was a reminder to count our blessings and live life to the fullest—because tragedy can strike without warning.

It was also a reminder to be thankful for the ongoing medical advances that give our children a fighting chance. Svea’s diagnosis was once fatal. Today she thrives and has a chance at leading a “normal” life (because let us be honest - what is normal anyway?!?).

Svea Strong now and forever 💪

08/09/2025

I realized that I haven’t posted an update in a few weeks. Ever since I went back to work on July 14th, it’s been busy. So here are a ton of pictures!!!

Svea has been enjoying summer to the fullest. She’s been to the UP to visit Nana and Grandpa at the same time Uncle Sven, Auntie Mariana and cousin Matias were there. It was such a lovely time.

She’s been to outdoor festivals where she got to ride on a fire truck, create art, see Grandpa perform, and go on a few carnival rides.

She has been playing with friends and enjoying several days with her babysitter”grandma.” Svea’s babysitter often brings her 4 year old grandson so now she is “Grandma” instead of Miss Kenda. 😂 I love it though because Svea has so much fun with him.

Life is pretty much back to normal except feeding (but that was never really normal anyway). We started our virtual meetings with the feeding clinic. Svea has made steps forward and backward. Right now we are focusing on oral intake during the day and overnight feeds with the tube. If we do daytime tube feeds, the IV pole has become a second appendage. She navigates with it so well. We stopped doing bottles for a bit overnight but she has been having night terrors and that seems to be the only thing that calms her down. Sleep was becoming a problem for Jason and I so now she gets one to two bottles overnight with her tube feed. At least it’s an improvement. Before surgery she drank 6-8 bottles overnight.

I have been struggling with the “trauma” of the tube. Unfortunately it comes out a lot though never intentionally. Svea is so protective of it and refuses to touch it because she doesn’t want to be messed with. Every time we have to put it back in, she screams at the top of her lungs. I hate it, and she does too. Thankfully she calms down quickly, but still it’s no fun. Plus the tape irritates her skin and we are constantly having to change sides.

Other than that, Svea is doing wonderful. Her incision has healed nicely. Her main chest tube site is still scabbed over and has been slow to heal but it’s not infected and progressing nicely.

Today we are headed to a family reunion on Jason’s side and tomorrow is the annual heart walk. It’s going to be a busy but meaningful weekend. I will be sure to post pictures from the heart walk!!!

07/09/2025

Today Svea saw her cardiologist.

Once again, her new fear of medical settings came out immediately—she started bawling as soon as we entered the room. Thankfully, there was nothing painful involved in the visit, and things went more smoothly once we were able to calm her down.

Svea is now considered fully repaired, which is truly a milestone worth celebrating. At the same time, this doesn’t mean she’s cured—unfortunately, she never will be. What we hope for now is that her heart remains strong for a very long time. This includes the durability of the valves she has, the openness of the vessels that have been patched or altered, and the heart’s ability to squeeze effectively (its function). All of these factors are essential for adequate blood circulation.

Her labs from yesterday showed high potassium levels, so we’ve adjusted her diuretics regimen again. She’ll have another round of labs in a week to see if further medication changes are necessary.

Looking ahead, the plan is to schedule an echocardiogram in 3–4 months, once she’s had more time to recover from surgery. This will help us assess both her heart function and how well the repair is holding up. If everything looks good, we’ll move to annual follow-ups—assuming no complications arise.

So far, this is the first surgery where Svea’s heart function hasn’t taken a significant post-operative dip. That’s likely due, in part, to her more aggressive medication regimen. I also believe that the power of God and prayer have played an equally important role in her healing.

Her cardiologist wants to keep her current medications steady for at least a year. It’s possible that she could be weaned off some of them in the future—but for now, we take it one step at a time. Only time will tell.

07/07/2025

Svea’s morning was filled with appointments. First, we met with the dietitian to go over Svea’s feeding schedule. She has been tolerating her feeds beautifully since we’ve been home. The feeding tube has been a huge help in making food more interesting and fun. We no longer have to spoon feed her to ensure she gets proper nutrition. Instead we are letting Svea go at her own pace. There is no stress since we can give her everything she needs through the tube. The focus now is to promote self feeding. Svea gets to do everything herself. Eventually she will get comfortable enough feeding herself that we will no longer need the tube. In the meantime, it is a tool to give her adequate nutrition while she learns to eat solid food.

Next we took a trip to the local hospital to get labs. Unfortunately this last hospitalization took a huge emotional toll on her. Svea started freaking out the moment we sat in the chair. She now hates any type of medical setting. She made it through the poke and the phlebotomist even let her take two toys from the treasure chest.

After the blood draw we drove to the pediatricians office to get her final set of stitches removed. Again Svea broke down in tears. No one was even in the room. It is so hard to watch as a parent. I wish I could take away her fear. I was able to calm her down and even get her to smile. However when someone entered the room, she lost it. Her screams could be heard from a mile away. I’m sure she scared all the other kids with thoughts of torture.

Thankfully she fell asleep on the way home and got a good nap in. Tomorrow we head to TC for cardiology. Let’s hope it goes a little smoother…

07/02/2025

Day 12 Post Op: Discharge Day. We made it home!!!!! Her coming home present was a brand new car. Watch out everyone, this driver needs some practice 🤣🤣

Next week Svea has 3 appointments and a blood draw. She will get her final set of stitches out on Monday. She will also virtually meet with the dietitian. This will be the start of the NG/feeding clinic. On Tuesday, she will have a cardiology follow up. Her sodium was still a little low this morning but it was trending in the right direction. Given the fact that she had 1 dose of diuril before they discontinued it, her team felt comfortable sending her home. They just want to recheck soon to ensure it comes back to the normal range.

For now, we are going to rest up!! So happy to be home 😊😊

07/01/2025

Day 12 Post Op: Happy July! Unfortunately we didn’t make it home. Svea’s labs came back abnormal. Her team changed her diuretics and want to test again in 24 hours.

Svea woke up this morning to getting poked. She cried and screamed in my arms. I thought this would be our last big upset. Now we have to do it again tomorrow.

Svea had another session of feeding therapy. She did really well. She tried every food that was presented to her. We now know she really likes goldfish crackers.

Other than that, we’ve been playing and hanging out. Hopefully we can head home tomorrow!

06/30/2025

Day 11 Post Op: Big news!!! We should be going home tomorrow 🤞🏻🤞🏻Svea has been off oxygen since 4am. She’s maintaining her goal of >85% and even stats in the low 90s on her own! She hasn’t been this high since she was born, and at the time, it was very problematic. Too much blood was going to her lungs and not enough to her body. It’s really quite amazing to see her in the 90s on her own now. Just as a point of reference she was in the low 80s/high 70s prior to this surgery. She has come so far!!!

She did have one very large puke when she first woke up. We decided to change her feeding schedule ever so slightly. Hopefully it will go better tomorrow morning.

Svea had a session of feeding therapy today. The therapist would like her to go into an outpatient feeding program. I guess Svea would work with speech, OT, a dietition, and a psychologist to address her feeding issues. The program also works on getting off a feeding tube. I need more information to determine if this is something we could logistically do. I did talk to the NP and she mentioned it can be done virtually. If this is true, it seems like a great opportunity.

Svea also had an afternoon play date with Mandi, her PT. I told Mandi Svea was refusing to walk. I checked her O2 and she was fine. She was just being overly cranky. Mandi got her up and moving by putting Peppa Pig stickers in the hall for her to find. It worked great until she found a toy she wanted to play with but could not. Then it was back to crying on the floor.

Other than that, not much else to report. We had a surprise visit from one of my best friends from elementary school. So cool of her to do that. Thank you Angie!!!

Finally, Svea will get labs in the morning to check her electrolytes. I don’t anticipate any problems. Nonetheless with every test comes the risk of postponing discharge. Please pray that everything is stable, especially her potassium. She did have to get multiple IV doses of potassium for the first few days post surgery due to it being low. Her team changed her diuretics regiment, and ever since, she has been ok.

If you would like to get together when we are home, just know we cannot be out in crowds for 2 weeks. After that, we will be free to return to our normal activities. Svea will be eager to return to church to play with all her friends.

Svea the HLHS Warrior

11/01/2025

09/28/2025

09/13/2025

08/10/2025

08/09/2025

07/09/2025

07/07/2025

07/02/2025

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06/30/2025

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