Elena’s Journey

08/27/2026

Update on Elena!

Doctors confirmed that there is a pocket of brain fluid forming and although they aren’t happy with how fast it’s grown, they don’t want to do surgery to move the shunt tubing yet. Since Elena hasn’t shown any signs of sickness, shunt failure, or in pain they want to hold off on any surgical intervention to wait and see if the fluid will keep growing causing discomfort or if it will eventually reabsorb into her tissues (like it’s supposed to do).

Elena has been through many surgeries especially around her abdomen. She has a lot of scar tissue in that area and if this tubing needed to be replaced, they don’t really have anywhere else they would easily put new tubing to drain into. This is also a huge factor as to why they are holding off on surgery and waiting to see what the fluid decides to do.

They thought sending Elena home to be monitored closely would be the best thing for her right now. They will see her again at the iwk next week to do further ultrasounds/X-rays to see how everything is looking.

Please keep elena in your thoughts and prayers! That the fluid stops growing, that it will reabsorb into her tissues and that she won’t need surgery ❤️‍🩹

Thank you all for your positive thoughts, prayers and lovely messages. I appreciate it all more than you know.

-Esther 🤍

08/27/2026

Please keep Elena in your thoughts and prayers.

After an amazing summer together Elena and I are back in emergency. Last week Elena developed a small hard lump in her lower left abdomen. She was seen in emergency however it didn’t seem to be worrisome. Fast forward to today, I brought Elena to emergency as the lump had gotten bigger quickly and after a bedside ultrasound the doctor said there is a big pocket of fluid forming.
Elena has a shunt which brings fluid down into her abdomen to drain. As you may remember this last November-January Elena was in the hospital with a shunt infection which resulted in her having to get surgery to remove the old shunt, put a new one in, and two more revision surgeries to put new tubing in so that the brain fluid would drain into her abdomen (where the brain fluid drains into her tissues, which her body then reabsorbs).
All I know right now is that there is a big pocket of fluid forming which doctors are assuming is her brain fluid not reabsorbing into her tissues for some reason.
Next steps are getting her medical team involved to come up with a plan, doing a “shunt series” which is a number of test done to make sure her shunt is not infected again, bloodwork, and monitoring the size of the fluid. 

I will say Elena has been as happy as can be throughout all of this as you can see from her giving a thumbs up in the photo. She’s a little trooper.

I’ll update when I know more.

Please keep elena in your thoughts and prayers. I’m really hoping and praying that this won’t result in her needing more surgery.

-Esther ❤️

07/25/2026

The iwk shared Elena’s story showing how much medical support they have provided for my sweet miracle girl and why donations are needed for them to provide the extensive medical care to save children’s lives like they saved Elena’s life countless times ❤️‍🩹

Before Elena was even born, her mother Esther knew she would have to fight for every breath.

At Esther’s 20-week ultrasound, doctors discovered Elena had Congenital Diaphragmatic Hernia (CDH), a rare and life-threatening condition that can leave babies with small, underdeveloped lungs.

What followed was a journey marked by uncertainty, extraordinary healthcare at the IWK, and a little girl whose strength continues to defy expectations.

Read Elena and her family's incredible story at iwkfoundation.org/meet-our-heroes/elena

06/25/2026

Elena graduated from her very first year of school today🥹❤️

Elena has grown soooo much this past school year! Even with missing a few months due to her being hospitalized over the holidays she has absolutely taken off with her speech, mobility, memorization, social skills and a huge role in her development has been going to pre kindergarten. I am beyond thankful for her teachers and school for helping her grow and learn in so many ways.

So proud of my miracle girl Elena. We celebrated with her favourites, ice cream and fries dipped in ketchup, with mama & nana❤️

06/16/2026

Elena was discharged Sunday afternoon from the iwk and has been on the mend! ❤️‍🩹

She didn’t test positive for any of the big viruses so they aren’t sure what she had. However the general antibiotic they gave her seemed to work and she’s been doing a lot better. She has her energy back and is able to play normally again.

Thank you all for your continued prayers and love ❤️

06/13/2026

After a long day yesterday with Elena having many absent seizures with O2 dips/needing oxygen, lots of throwups and lots of rest, Elena woke up this morning feeling a lot better!

So far all of the tests/scans she has had done are all coming back normal. Her shunt doesn’t seem to be infected so far which is great news. She was started on a general antibiotic last night and will receive a second dose of that in the middle of the night tonight. She will stay in the iwk for another night or two while they wait for more tests to come back which will hopefully give us a clearer idea of what’s going on.

She is back to her chipper self, definitely tired but very happy and wanting to eat a little bit again as well.

Thank you all for your continued thoughts and prayers for little miss Elena ❤️‍🩹

06/12/2026

Please keep Elena in your thoughts and prayers today.

She seemed to be battling just a normal cold with a cough and runny nose yesterday morning however late last night she took a turn and started vomiting continuously with traces of old blood. She got even worse this morning, seems to be having absent seizures that last a few minutes each and her O2 levels dip down into the 70s needing some oxygen support on and off.

We have been at the emergency and they have given her an IV, taken bloodwork and running more tests while we try to figure out what’s going on.

Before this Elena had been doing very good. Hoping for a fast recovery❤️‍🩹

05/11/2026

Happy Mothers Day to all of the moms out there❤️

And thank you to all of the moms/friends/motherly figures who have continuously prayed for my little girl and I, who have supported me as a mother through the hard and good times, who have checked in with me while Elena has been sick, who were a shoulder to cry on during uncertain times, who have taken their time to show up in many ways during Elena’s many hospital stays… The words, support and prayer from you women have not gone unnoticed.

I am forever grateful for you all ❤️

-Esther