Hearts for Evelyn

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Hearts for Evelyn A place to follow Evelyn's congenital heart defect and heart transplant journey

The last couple of days, the team and Evelyn have been working hard to remove excess fluid from Evelyn's lungs and give ...
31/05/2026

The last couple of days, the team and Evelyn have been working hard to remove excess fluid from Evelyn's lungs and give the swelling and inflammation time to improve. She had remained fully sedated and on a paralytic so the ventilator could do all of the work for her, allowing her body to focus on healing.

They have been walking an incredibly fine line. Last week, Evelyn developed an acute kidney injury and her kidneys temporarily stopped working properly, so the team had to stop the diuretics and give her kidneys a chance to recover. While that helped protect her kidneys, it also allowed fluid to build up and made things harder on her lungs. Since then, they have been carefully balancing removing enough fluid to help her breathing without putting too much stress on her kidneys again.

Today brought a moment we've been waiting for. They were able to stop the paralytic, and Evelyn woke up some. She was alert enough to hold Daddy's hand and answer yes and no questions. Seeing those little signs of her personality and awareness peek through all of this was incredibly special.

The image on the left is from Thursday, and the image on the right is from today. There is a small improvement in her lungs. It may not look like much, but after everything she's been through, we'll take every bit of progress we can get. A small step forward is still a step forward.
We still have a long road ahead, and her lungs need more time to heal, but today gave us a glimpse of our girl.

In the middle of all the machines, medications, and uncertainty, getting to hold her hand and see her respond reminded us that she's still right here, fighting every step of the way. ❤️

The last 24 hours with Evelyn have been incredibly heavy and scary.Last night the team discovered there was a kink/narro...
29/05/2026

The last 24 hours with Evelyn have been incredibly heavy and scary.

Last night the team discovered there was a kink/narrowing issue involving her breathing tube and airway positioning. At first there was concern because they could not get the suction catheter to pass correctly, and there were worries about mucus plugs or something more serious. The pulmonologist and ICU team performed another bronchoscopy and found that the issue appeared to be related to a kink along with severely inflamed tissues and swelling in her airway. They ultimately had to replace her ET tube, meaning another reintubation.

They also performed an echocardiogram to look closely at her heart, and thankfully it came back reassuring from a heart function standpoint. Right now, the bigger battle is her lungs.

Today the doctors also found a small clot in her LVAD tubing, so they changed out the circuit. They explained this can happen, especially in the first few weeks after surgery while they work to carefully balance everything. They also restarted nitric oxide to help lower the pressures in her lungs and reduce strain on her heart and circulation.

Despite all of this, Evelyn’s lungs have continued struggling badly from pulmonary edema, and she has required 100% oxygen support again. Today things became even more serious when the team had to start a paralytic medication to fully relax her body and allow the ventilator to work more effectively because she is going into respiratory failure. Essentially, they are placing her into a medically induced sleep state to give her body the best possible chance to rest and heal. This allows all the machines, and drugs to work most effectively at healing her.

They still have tools and treatments available to support her and give her the best fighting chance, but none of this makes it any less terrifying to watch as her parents.

Please continue praying for our sweet girl. Right now she needs every bit of strength she can get.

26/05/2026

They tried to extubate her on Sunday.

After Evelyn was extubated, she was unfortunately too weak to maintain her breathing on her own. CPAP and BiPAP were not enough support and her oxygen saturations continued to drop, so the team made the decision to reintubate her to keep her safe.

Because of how weak she was afterward, there was concern for a possible neurological issue or bleed in her brain, but thankfully her CT scan came back normal.

The doctors also discovered another issue. When trying to pass the suction catheter down her breathing tube to clear secretions, it would not pass correctly. They performed a bedside bronchoscopy and found that her breathing tube was positioned in a way that was causing restriction right at the curve of her airway. Thank God it turned out to be positional and not something more serious inside her lungs or airway.

Right now Evelyn is remaining intubated while her body regains strength. Between everything her little body has been through, the weakness, lung congestion, and the tube positioning issue, the team feels she just needs more time before trying extubation again.

Even through all of this, our girl is still fighting so hard. Today they turned down her sedation some, and she was able to use her own hands to change the channels with the remote, hold up four fingers for Despicable Me 4, shake her head yes and no, point to people, and let us know her tummy hurt. Seeing those little pieces of her personality shining through meant everything to us.

This is tough stuff. Watching your child go through all of this is something no parent can ever prepare for. But we are so thankful for every small victory, every answered prayer, and every person helping care for our sweet girl.

Please continue praying for Evelyn’s strength, healing, lungs, heart, and for her body to keep recovering one step at a time.

23/05/2026

Today we got a piece of our girl back.

Earlier in the day, Evelyn was about to get her tube out. The team had been slowly weaning support and watching to see how she tolerated everything through last night. We were hopeful we may finally get to see her beautiful eyes open more and hear her sweet voice again soon.

Unfortunately, 30 minutes before extubation could happen, her nurse noticed dark blood in her stool, and the drainage coming back from her NG tube had turned dark brown/maroon in color. After evaluating her, the team determined Evelyn has an upper GI bleed. They’ve now started medications through her IV to help decrease stomach inflammation and protect the lining of her stomach while things heal. They also had to carefully adjust her blood thinner settings and temporarily stop aspirin to try and balance the bleeding risk safely with the support her heart still needs.This can be common in kids on high anticoagulantion who are on ecmo and LVADs. Because of all of this, the safest decision was to keep her intubated for now while her body rests and heals. Another bump in the road for our sweet girl.

Tonight, the nurse practitioner asked me if I had any teenagers, and I pointed at Evelyn and joked, “Yes, right there, she’s a big daddy’s girl.” Right then, she opened her eyes a little as if she was listening. I walked over to her and said, “Hey Evie, I’m going to go get daddy okay?” and she smiled SO big through her breathing tube and bobbed her head side to side, I couldn't believe it.

Then I told her, “Okay Evelyn, I’ll see you in a little bit okay?” and she shook her head yes and smiled.

After days and days of machines, sedation, setbacks, and fear… seeing her little personality peek through again meant absolutely everything to us. I cried as I walked out of the unit. I needed that so much. Our sweet girl is still in there, and she is still fighting.

No new updates tonight, Evelyn is still intubated, but we are continuing to make progress toward extubation. It was note...
23/05/2026

No new updates tonight, Evelyn is still intubated, but we are continuing to make progress toward extubation. It was noted in her chart this afternoon that if her echo looks reassuring after all the ventilator weaning, they will plan to remove her breathing tube tomorrow. I’m not holding my breath on that one… no pun intended. ❤️

Every single day we pray to see our little girl’s eyes and hear her sweet voice again. She is doing so incredibly well considering the long week she’s had. It’s hard to believe it’s been almost 8 days now of her being intubated. This has been one of the hardest things we’ve ever gone through, and it really makes you miss and appreciate the smallest things in life.

I also want to take a moment to thank each and every one of you who has sent Evelyn care packages, cards, prayers, homemade gifts, messages, and well wishes over this last week. The amount of love surrounding our family has been overwhelming in the best way. I cannot wait for her to wake up and see all the beautiful things that have been dropped off for her. She is so deeply loved. ❤️

Today was not part of the original plan, but I want to share an update on Evelyn and also explain what happened in a way...
22/05/2026

Today was not part of the original plan, but I want to share an update on Evelyn and also explain what happened in a way that makes sense.

We were preparing to move toward taking her breathing tube out, and before that we had asked if her three chest drainage tubes could be removed while she was still sedated and comfortable. The team agreed, and it was done with that goal in mind so she wouldn’t have to experience that pain while awake.

Two of the tubes came out without any issues.

The third one did not. It would not budge despite careful attempts at the bedside, and even by the surgeon. Because of that, the decision was made to bring Evelyn to the OR so they could look more closely rather than risk forcing it.

Once there, they discovered that a suture from her chest closure had unintentionally caught and secured the drain, which is why it could not be removed normally. The surgeon was able to reopen only a very small portion of her chest incision (about an inch and a half) to safely release and remove the tube, and then close everything back up.

As hard as that moment was, I am very grateful for how it was handled. They did not force anything, and they chose the safest possible route to protect her. I am also very thankful we were able to take care of this while she is still sedated, because if this had been discovered after her breathing tube was removed, she likely would have needed to be re-intubated for the procedure.

This was not expected, but it was handled with caution and care, and she is now back resting.

Advocating for your child matters. Speaking up matters. Trusting your instincts matters, it goes to show just how important it is to be present and involved in every step of her care. We have a PHD in Evelyn.

We are continuing forward, one step at a time, and will see what tomorrow brings. 🤍

20/05/2026

Though Evelyn is doing great, we are going to wait until tomorrow morning to try and extubate her. Today the team wanted to see how the function of her LVAD and right heart responded with some weaning of sedation. They adjusted her ventilator settings and lightened her sedation enough for her to grimace, squeeze my hand, and lift her arm. (I think she was trying to arm wrestle me.) She definitely got excited when she heard our voices.

This is all part of making sure she is truly ready. They want to give her heart one more day of recovery before fully committing to taking the breathing tube out, because once it’s out, it’s a tool they won’t have to monitor certain numbers as closely.

They just want to make sure she stays stable and consistent. By giving her this extra day, she gets the chance to prove to the team that she is most definitely ready to wake up and be sassy again.

Even though today wasn’t extubation day, knowing that she could hear mine and dad's voice and respond to it did my mama heart so much good.

**picture before surgery**(something for us to look forward to seeing her smile)Evelyn was unfortunately not able to get...
19/05/2026

**picture before surgery**(something for us to look forward to seeing her smile)

Evelyn was unfortunately not able to get her breathing tube taken out today. Her right heart function has decreased some, so the team is going to focus on giving her more diuretics to help remove the extra fluid from her body and decrease the fluid overload on her heart. Once they are able to get that under better control, they can work toward extubating her, hopefully tomorrow.

This is a marathon, not a race. As badly as we want to see our little girl’s beautiful eyes and hear her voice again, we know this has to be done safely and only when her body is truly ready for it. Right now the goal is steady, safe progress, one step at a time. Please continue to keep Evelyn in your prayers as she keeps fighting her way forward. 🤍

18/05/2026

This afternoon Evelyn had a very scary episode where her oxygen saturation levels suddenly dropped very low without warning, o2 into the 40's. The team responded immediately, called for help, and manually ventilated her with the anesthesia bag and nitric oxide support. Thankfully, she responded right away and her oxygen levels quickly recovered back to 100%. She was then safely placed back on the ventilator.

Since then, the team has been thoroughly checking everything to try to find a cause. They checked her tubes and lines, ran labs, completed an echocardiogram, and did a chest x-ray. So far, everything has come back reassuring and looking good.
They suspect the episode may have been related to changes made to her ventilator settings in preparation for possible extubation tomorrow.

Throughout the day Evelyn was showing small signs of awareness, somewhat through her sedation but her body just wasn’t quite ready to fully take over more yet. She must be sensitive to the change because she shouldn't have been that aware. As much as she wants to, she is still on many medications that suppress her ability to breathe completely on her own right now while her body continues to recover.

At this time they do not know the exact cause, but they will continue monitoring her very closely for any additional episodes. Moments like this are incredibly frightening, but we are thankful for how quickly everyone responded and for how well Evelyn recovered afterward.

Evelyn continues to do really well. Every time a doctor walks in, I hold my breath expecting the worst, but every time t...
18/05/2026

Evelyn continues to do really well. Every time a doctor walks in, I hold my breath expecting the worst, but every time they have nothing but good things to say about our girl.

It’s been 3 days now without seeing my baby girl smile, open her eyes, or hearing her voice. Those are the moments I miss the most right now.

After her most recent echo this morning, we can safely say we are working toward extubation, with the hope of it happening sometime tomorrow. One step closer. 💜

She still has a long road to recovery after this go around. Once she’s extubated, the hard work really begins again. Shell need to be sitting up, standing, walking, using the bathroom, eating, and working toward needing no oxygen support. We know our girl is strong, and we’ll be right beside her every step of the way.

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