Elena’s Journey

Elena has been a busy busy girl!

Last weekend she took out her trach in the night and the hole (the stoma) that the trach goes into, closed over. She was brought to emergency and all her levels were great! Her oxygen stayed in the high 90s and heart rate was stable. She was admitted into the iwk Sunday morning and stayed until Wednesday afternoon. Elena had her trach out from Sunday-Tuesday, and she was happy as could be. However she did experience some heavy breathing along with a rise and fall of heart rate while she slept. This led to her being sedated Tuesday morning and was given a bronchoscopy which showed some growth of granulation tissue in her trachea, causing the heavy breathing at night. The doctor decided to put her trach back in and for Elena to go back to the iwk for appointments soon to be evaluated by her specialist and potentially come up with a plan for the granulation tissue removal and decannulation (trach removal) at a further date.

Since then Elena’s been home and enjoying her days, eating snacks and going to the park 🤍

Elena isn’t a fan of cats and dogs, however she is the biggest fan of grandpa’s chickens!!

We spent this past Sunday hanging out with grandpa and the chickens. Elena was so happy and was scooting after them. She’s so gentle and will pet them when they are near.

We also picked some fresh raspberries from grandpa’s garden 🪴

Elena loves ikea and fell in love with this stuffed animal 🐶 of course she convinced momma to get it for her and is currently napping cuddling her new toy

A few cute pictures of Elena from the last couple of weeks 🤍

Elena gets more curious every single day and is loving to explore. She will eat almost all of the foods she can get her hands on (except most sweet foods, she loves savoury).
She is still learning how to drink liquids however she’s been practicing with her sippy cup daily.

She loves flowers, her toy penguin & pineapple, morning cuddles, her favourite song is You Are My Sunshine, being with her grandparents, car rides, & dancing.

So beyond blessed to be sweet Elena’s mom 🤍

Little miracle girl🤍

Elena was looking too cute last night after bath time not to post these pictures 🤍

Elena has been doing very well and is still a lover of books 📕

Happy Canada Day from this little miracle girl 🤍🇨🇦

2 years ago vs now 🤍

Elena has been doing so great with eating orally!

For the last few weeks she has moved from eating just puréed food to now eating a solids! She’s learnt how to chew and is wanting to explore all kinds of new foods.

She starts her mornings off with soft boiled eggs and half a slice of spelt sourdough toast with butter. She absolutely loves it and will eat other foods throughout the day like rice crackers, avocado, meat and anything else she sees someone eat. She still is fed through her feeding tube through the night with formula as she’s not eating enough oral food yet to get rid of the formula feeds but she’s definitely on track to one day only eat food orally!

Thank you for all your positive thoughts and prayers for Elena 🤍

Little Elena update:

Elena’s been doing great since she was sick a few weeks ago. She still needs more trach suctioning than usual and can’t tolerate corking due to that however she’s been very happy/content.

She is growing up like crazy and is getting stronger daily! She’s getting more curious and unfortunately has learned how to take her trach out herself 🙃
Hoping that this new skill of hers doesn’t last too long😅

This just shows why it’s so important for Elena to have full time night nursing care while she has a trach. We have one absolutely amazing night nurse that takes care of Elena so lovingly and we are still waiting for another nurse to take the other part time position (It’s been since October that we have only had part time night nursing).
A few weeks ago we did get another amazing nurse say she would pick up some night shifts when she’s able to, which has been a huge help! This new nurse will only be able to work with us for a month or two as she has another job outside of HRM.
If you could send your prayers and positive thoughts towards Elena’s nursing situation that would be very much appreciated! I’m hopeful that a new nurse will apply for the part time position in the next few months so that Elena can get the nursing care she needs 🤍

Hello!!! The last few weeks have been gogogo!

A cold went through our house and Elena got a nasty cold for the first time since last summer! It lasted for 2 weeks with her and ended us being admitted to the iwk for two days. Thankfully Elena pushed through very well and we were sent home with antibiotics for 10 days.
We were admitted to the PMU unit at the iwk which is where Elena lived for several months before being sent home almost two years ago now 🏡
Even with her being sick Elena and I had such an amazing time seeing nurses who became more like family while we lived on PMU.

Another update is that Elena has started to eat some more “solid” foods! She has been eating some baby crackers, yogurt melts and even some small bits of chicken! This is a huge huge huge step for her!

She’s also been developing really well with some communication. She will wave say bye bye when someone is leaving, blow them a kiss, and when she’s done eating in her high chair she will make a sound similar to the word Done.
While Elena was sick she had to stop her “corking trials” however she should be well enough in the next few days to start that back up again. Before she got sick she was seen by her doctor who gave me the go ahead to keep corking trials going while she had her mid day nap to see how she does 🤍

Very greatful for everyone who keeps Elena in their thoughts and prayers🤍

Little update on Elena🤍

Elena has been doing very well! She’s getting more curious with foods, wanting to explore new places and is constantly on the move scooting from place to place!

I’ve been “corking” her trach and she’s very well with it! (this is where her trach is covered making her breathe completely through her mouth and nose. This has to happen to help build her lung strength to one day, hopefully soon, to get her trach out!)

While she’s corked she’s able to clearly make sounds and she’s been learning how to speak 🤍 her favourites recently have been momma, dada, up, down, all done, and even got an uh oh!

She’s learning quickly and it’s so amazing to see her grow.

One thing that’s new is that Elena has a hernia on her lower left side of her abdomen. It’s not anything that needs immediate action on however she will need to have a surgery to fix it in the near future. Her medical team doesn’t want to put Elena under any more sedation due to the countless times she’s already been put under, so they will align this hernia surgery with the next time she is sedated (as long as nothing gets worse).
Your thoughts and prayers would be so appreciated as it’s hard to think of Elena going through yet another surgery ❤️‍🩹

Elena got a “learning tower” and she’s doing so well with it!

She’s now able to stand at the kitchen counter and be apart of cooking with mommy, eating, play and so much more.

Elena is doing well with oral feeds and is so open to exploring all sorts of savoury foods (she still hates all things sweet!)

Hope everyone had a lovely Easter weekend 🐣

Elena enjoyed her Easter basket from grandma maymay soooo much as you can see 😂🤍

Sweet little Elena’s internal feeding tube broke again yesterday late afternoon so off to emergency we went!

She wasn’t in any sort of pain/discomfort. This same thing happened last month and her feeding tube had to be replaced then too.
Internal G/J feeding tubes will either last for months or can last only a month or two.

Elena did amazingly and loved seeing familiar nurses, playing with toys in her emergency room, tasting some yummy pickles and showing them to all the nurses who came in.

We almost had to be admitted overnight due to no doctors being in to do the 10 minute feeding tube change however last minute in the early night, they found a doctor who was available! They quickly changed her feeding tube with no issues and Elena handled it all like a champ.

Soon after we were discharged and headed home to get Elena into bed for a much needed sleep 🤍

Forever grateful for how fast the emergency doctors and nurses get elena into an isolated room as she’s immune compromised and also for the continuing support and work all the doctors/nurses/medical professionals do for little Elena 🤍

Elena has been a happy gal!

She her her first dentist visit which went great and Elena’s teeth look amazing!

She’s been seeing lots of family and going out on little day trips/ car rides.

Mom gave her her first official hair trim on Friday along with a blow dry.

Elena’s been doing great with her oral feeds and lets me know when she would like some Greek yogurt, mashed veggies or purred stew.

Still no nursing updates. We are still waiting to get 1-2 more night nurses since one of the night nurses resigned to relocate back in October, however we haven’t had any luck. Still praying and hoping for more nurses soon 🙏🏼

Elena got to see a fire for the first time at papas house last week and she absolutely loved it!

It’s so amazing to see elena experiencing things for the first time 🥹

Feeding update:
Elena has been doing very well with G (feeds going through her G tube, straight into her stomach) and is even having 1-3 small oral feeds a day! She is fed through her J tube at night to avoid any reflux, vomiting and potential aspiration (Aspiration occurs when food, drink are breathed into the lungs).

We are still taking the G feeds slow due to her reflux issues however she is doing so amazingly 🤍💪🏼

Hope everyone is having a great Wednesday!

Elena has been absolutely LOVING oral feed times and is back to eating beef stew along with Greek yogurt. She is still getting tube feeds of formula but she’s doing so well with oral feeds!

Her personality is showing through more and more each day and loves taking glasses off of anyone wearing them, to put them on herself 😂

Forever blessed to have her here and growing so much each day 🤍

Started off the week with Elena going to emergency this morning!

All is well and as you can tell by the first photo, Elena had a blast 😂

After Elena woke up I realized that her internal feeding tube was falling out (the “bubble” that gets filled up with water weekly to keep the feeding tube in Elena’s abdomen had a leak which caused the feeding tube to fall out).

Quickly she was brought to emergency however she seemed to be in absolutely no pain at all during the day! The hardest bit was the wait and missing her nap, but she got lots of cuddles🤍

Usually it takes a long time to get a new one in however she laid perfectly still the entire time while watching her show, and it only took the doctor 5 minutes this afternoon to put in a new one!

She had a quick nap on the way home and is now back eating some Greek yogurt before bed!

She’s one tough and strong little girl 💪 ❤️‍🩹

Long time no see!!!

Wanted to check in as it’s been a while since I’ve done any updates on here!
Firstly, Elena is doing great and getting unbelievably strong! I appreciate all the kind and loving messages asking how she’s doing. I’ve even seen some of you guys in public who say you follow along Elena’s Journey, and it’s so amazing to meet/see you 🤍

Honestly January was a month of lots of ups and downs especially reguarding Elena’s nursing.
We are supposed to be getting 7 nights a week of overnight nursing along with 6 hours of day nursing a week that I split into two 3 hour nursing shifts so I can go get groceries, be active, or take time to myself. 
However since October we had one night nurse resign, leaving us with one other nurse (who we love dearly) but this means we haven’t been having much night shift coverage/ when our nurse is sick or on vacation then we get no nursing at all.
There was a nurse finally hired for the other night shift position in December, however right before they were supposed to be trained with the nursing company, the nurse quit, bringing us back to square one. As far as I know, nobody else has applied for the position yet.
On top of this, I had a call a few weeks ago from “Continuing Care” (Continuing Care is an organization through the government that pays for Elena’s nursing due to her medical complexities) and they informed me that they reviewed Elena’s file and had decided to take away Elena’s day nursing.
So pretty much it’s been a lot of sleepless nights watching over Elena to make sure she’s okay, doing the care the night nurse would be doing throughout the nights and dealing with the troubles of medical equipment.

Please continue to pray over the nursing situation🤍 apologies about how long it’s been since I posted about Elena on here! I know many of you were concerned Elena was sick and that’s why I wasn’t posting🤍

Through all of the bad news though, the amazing news is Elena has been doing great. She’s growing strong and stronger daily!
Yesterday she even climbed up on the couch all by herself which was big! She’s Ana amazing little girl who is loved dearly 🤍

Sending some love to Elena’s grandparents today!

We wouldn’t be where we are today without the love and support from these three amazing people 🤍 thank you for the three of your continued support, love, kindness, help, for being the people there with us daily in the hospital, and learning her care so we can step out from time to time while you care for her so well🤍

Little story time:

When I was around 6 months pregnant, I was lucky enough to get a doula to help me with my birthing journey. She was incredibly sweet, kind and brought a lot of insight to me on what different ways birthing can look like as I was about to be a first time mom.

When I got to my induction date, she came to the hospital with us and was by our side until Elena was born 20 hours later. Giving us tips and tricks to make the birthing process easier and advocated for us with doctors and nurses on how we wanted the birth to go.

After Elena was born, you all know how Elena’s health was constantly up and down, especially in the first 24hours of her life. Our doula came to see me in the PICU at the hospital one last time before she moved away and she gave me this gorgeous handmade blanket and she said she hopes that one day I would be able to wrap elena and myself in it when/if we get to take her home one day.

The blanket in the pictures below is the blanket that she so thoughtfully made and gave to us. It’s been two years since she gave it to me and every time I see elena with it, it brings me joy to see how far we’ve come and how amazingly Elena is doing considering her start🤍

I am very greatful we had a doula, especially such a kind and thoughtful one 🤍

(Picture is of Elena today during her nap)

Elena found out she can stand up on her own and she’s barely sit down since!

She’s now able to walk the whole length of our couch while holding onto it👏🏻

We lowered her crib as she started to stand in there as well!
Once she learns something, she really takes off!

We (and her physio team) are incredibly happy with her new found strength and desire to stand/get around on her own 🤍

We are also trying her with some oral food again as well. Right now her favourite is Greek yogurt (she isn’t a fan of anything sweet) and she will have a few spoonfuls a day 🥄

Hey everyone! Hope you all had an amazing Christmas and Happy New Year!
It’s been a while since posting on here!

We have been busy seeing family/friends, I (Esther) was sick the week before Christmas, dada (Chris) was sick the week after Christmas, Elena however did not get sick which was a huge blessing, we celebrated the new year and dadas birthday!

Elena has been doing really good. She’s getting more comfortable with people and even stood up completely on her own yesterday holding onto a chair! She’s never done that without our help before and we are so excited for her new strength and confidence!

We also haven’t had much night time nursing care since October but especially in the last 1.5 months. We have gotten the news that a new nurse has been hired however she won’t start until March or April due to training purposes.
We do have two nurses currently (one day nurse who comes for 3hours 2x a week during the days, and one night nurse) and they are absolutely amazing! We won the jackpot having them as Elena’s nurses 🤍

Will be posting more on here in the new year about our sweet miracle girl.
Thank you for your continued love, prayers and support🤍

Sharing some Elena cuteness to your Facebook feed today!

She’s growing so much 🥹 Elena’s had a little cold however she seems to be on the mend! ❤️‍🩹
Always reminded of how blessed we are to have her here with us daily 🤍🤍

Sorry to not post in a while but we have been on the go with hospital appointments and spending time with family!

Elena’s auntie and cousin came from PEI for a visit and we had lots of great laughs, hugs and fun!

Elena has done well since her bronchoscopy however they past few days she’s had a small cough and lots of secretions through her trach. We are thinking she has a small cold however we are hopeful it will be cleared up soon!

She has been on the move with her scooting and gets around very well that way.

🙏🏼 Our prayer/positive thoughts request would be to pray for her cold to clear up and also for a new night nurse to be hired for Elena.
We are heading into December where almost half of it, we currently aren’t scheduled for night nursing, which honestly is disheartening to hear.

We only have one night nurse, who we love dearly and is so so so so beyond amazing with Elena, and we are praying for another amazing nurse to be hired soon🤍
So far we have been told that nobody has applied for the position in over 3weeks… we are hoping that the right nurse will come along at the right time to work with our sweet girl🤍

Elena is out of the OR and on her way home!

Her doctor gave us amazing news as well!

There is no bump in her throat anymore and she believes it was more of a tugging of the airway walls causing it to collapse a small amount as her trach was a bulkier model. It also could have been due to the bigger sized camera the other doctor used to do her bronchoscopy back in April which would have caused her airway some stress making the walls be pulled down causing a bump.
The doctor gave elena a new trach which doesn’t have the big bulky end and hopefully the new one won’t cause as much stress & tugging on her airway.
Elena did so well going under anesthesia and we were told that she was talking and babbling to her medical team before she was put to sleep. She also woke up after the OR so incredibly well and stayed in mommas arms until it was time to head home 🏡 🤍
We are extremely happy with the news that Elena’s airway looks healthy and have been given the go ahead to start corking trials in a few days.
Thank you all so much for your continued love, prayers and support towards our little miracle girl 🤍🤍🤍

Waiting for our sweet girl to go into the OR 🥹

She’s in a great mood this morning and the healthiest she’s ever been before being put under anesthesia so we are very hopeful that everything will go according to plan🤍🤍

Please keep elena in your thoughts and prayers this morning 🤍

Elena’s doing great but wanted to post about two prayer/positive thoughts requests.

1. Elena will be going into the IWK tomorrow for an OR time of 9am. She is getting a bronchoscope done of her airway. Her new throat specialist will be examining the bump that was discovered in her airway in April.
This is not an invasive procedure however Elena will be out under anesthesia and with that comes risks. Elena has been sedated countless times in her almost 2 years of life and there is always a small concern about anesthesia. However we are staying positive and hoping for a smooth day tomorrow.

2. Elena has amazing nurses to help monitor her during the nights. Almost theee weeks ago one of the two night nurses has sadly resigned to move out of province. We are super happy for her new move however as parents of a medical toddler, we are sad to see one of Elena’s amazing nurses go. Elena’s night nursing is in place for her safety as she needs constant monitoring through the nights with her medical equipment and to monitor her oxygen levels/heart rate.
The VON nursing position has been posted however nobody has applied for it yet that we know of. We would love your prayers and positive thoughts on this and hopefully soon a nurse will apply for the part time night position with our sweet girl.

A little late but our Halloween costumes this year with our sweet Elena 🤍🤍

Elena loves farms and farm animals so it was easy to decide what are costumes would be this year! 🐮 🐷 🐑 👨‍🌾

Elena and mommy also went to another dress up birthday party before Halloween where we were bugs bunny and tweety bird 🐥 🐰