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

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.

06/30/2025

Day 10 Post Op: Today marks 12 days of being admitted to the hospital and tomorrow will be 2 weeks since we left home. In the grand scheme of things, this is just a blink of the eye. At the same time, Svea and I both miss home. Today was the first full day of doing this together. We really do make a good team but we miss Daddy, both Grandmas, and even Auntie Kate.

There isn’t much to update. Svea is tolerating her feeds. She did have one puke overnight, but the nurse said it wasn’t too bad. Other than that, she has kept everything down.

You can tell she is feeling better now that she is getting adequate nutrition. Her energy, mood, coloring and overall temperament is better.

Now we need to work on getting off oxygen. She still drops below her goal when she is active. It’s crazy how well a two year old knows her body. She knows when to take a break and when to keep going. Svea has to be without oxygen for 24 hours before discharge.

While we wait for discharge we will continue to make the hospital our home. We play, watch tv, take naps, and go on adventures within the hospital to pass the time. Mama tried to take a nap at one point today but Svea disagreed. Yesterday I didn’t leave until after 10pm and was back before 6am so I was very tired. Anyway, Svea kept pulling my hair, tapping my face, and then attempted to empty her suitcase on me 🤦‍♀️🤦‍♀️ She managed to eventually get tired and I finally got my nap cuddled up wih her.

Being in the hospital means long drawn out days. I’m just so grateful I get to spend them with this amazing little girl. You can see and feel God’s healing power every day. It truly is a beautiful and powerful thing.

06/29/2025

Svea had a unique opportunity to be part of a special coloring book. A big thank you to Willow's Way for putting this together. Svea alongside numerous other heart warriors and heart angels can be found in the 2nd edition Heart Warrior coloring book. If you are looking for a unique gift or want to support a great cause, here is a link to purchase the book: https://a.co/d/iWzGdH5.

Let’s help this organization to continue to help medically complex families who are facing impossible situations. They are dedicated to working with families whose children are on hospice care.

06/28/2025

Day 9 post Op: Today has been primarily focused on feeding. We have been working out some issues and evolving the game plan. I chose a very thick formula. Unfortunately it was clogging the NG tube and disrupting the feed. I really appreciate the whole food quality ingredients and did not want to switch. At the same time, Svea is volume intolerant. If you feed her too much volume at once, she will vomit. We had to find the perfect balance of thinning the formula with water to flow through the tube but not adding too much volume that she becomes intolerant. I think we are good to go now.

Her team set a blood oxygen goal of 85 or above. She has had trouble maintaining it without being on oxygen. She seems to hover at 83/84. They sent her for another chest X-ray just to make sure her everything was still ok with her lungs. Well, they look great! The best yet! Svea is just taking a bit longer to recover. She tends to advance at a slower pace and that’s ok. She will get there!

The other big medical highlight of the day is that Svea’s IJ came out! That was the central line in her neck. She cried through the removal but seemed to bouce back fairly quickly.

Today’s “laugh” of the day happened when I tripped on her feeding tube and accidentally caused it to come out. It occured during her first morning feed when she was connected to the pump. Silly me. Unfortunately the tube had to eventually go back in and Svea was NOT happy. Mommy is so sorry sweet girl!!!!

Other than that we said goodbye to both Grandmas. We miss them so much already. I am incredibly grateful for all their help. It’s just us now. Hopefully we will be heading home very soon! We miss Daddy, the dogs, our church family, friends, and all the fun we have there.

06/27/2025

Day 8 Post Op: I walked into Svea’s room at 6:30am. She was sitting up in bed watching Blippi. When I walked in, she smiled at me and said, “Hi Mama.”

I thought she may have had a rough night. I always sneak out after she falls asleep and return before she wakes up. Not today. Apparently she woke up at 3am. She looked at her nurse and said, “No sleep!” Rather than put her back to bed, they played with her. Svea was very convincing and “cute.” 🤦‍♀️

She managed to walk to the family lounge without oxygen this morning. At the same time, she still needs minimal support after a while. She is getting stronger, and she is almost there!

Svea got a feeding tube today. We are hoping it is very temporary. It will definitely give her the nutritional boost she needs. Her energy level has gone down from lack of food. Hopefully as her body continues to heal she will be able to pick up her intake. For now we will give her the support she needs through the tube.

The tube did not get placed until late in the day so we have yet to start feeds. If she tolerates them overnight, her central line will come out tomorrow. We are only using it for fluids overnight. If we can get formula in Svea, we don’t need the line.

Other than that, nothing big happened. I met with her clinical care coordinator to go over at home care after open heart surgery. Svea played with her PT. We also had a special visit from Angie (Lyndi’s Mom).

On a more comical note, we ordered Indian food. Doordash delivered the wrong order and we had to guess what we were eating. I did get a refund but it sure made dinner interesting.

Svea the HLHS Warrior

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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