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Juliet’s Journey, Calais, ME (2026)

01/12/2026

Juliet started daycare today!

We’re so proud of our girl!

She was so excited to wear her Bluey Valentines Sweater 💕

Obviously for safety we will not be sharing where she goes but we are so excited for this next chapter!

01/03/2026

Update:

Juliet’s g tube area looks SO much better!

Thank you to everyone who sent us prayers / positive thoughts our way during this most recent infection!

🩵🐞🩵

**picture is from a few weeks ago**

01/01/2026

A quick update on Juliet 🩵

Her gastro team was amazing today. They were able to change out her G-tube and treat the granulation tissue (overgrown scar tissue) that we believe has been causing the bleeding by cauterizing it with silver nitrate. They also replaced her tube with a slightly longer one for now and added a few new treatments to her care routine. We’re really hopeful that this combination will finally knock out this infection once and for all.

We were incredibly thankful to be able to come home after the appointment — and even more thankful that we beat the winter storm and made it back safely before it started. Feeling very grateful and relieved tonight. 💕

HAPPY NEW YEARS!! 🎉

🩵🐞🩵

12/29/2025

Juliet has been fighting a g tube infection since Christmas Day.

Working with her team using the communication app, we’ve been following a care plan for it.

Then, after her bath last night it unexpectedly started bleeding. I mean, bright red and a LOT of it.

Finally after soaking through several 4x4 gauze with holding pressure to her button we called her care team's nurse line and the on-call pediatric gastroenterologist called us back right away.

While on the phone, the bleeding started to dissipate.

We had agreed on the phone that because the infection wasn’t clearing up with the antibiotic ointment, that she might have an abscess under the skin which would be a very big problem that would require surgery and that she needed to be seen ASAP.

Unfortunately the only way to figure that out is doing specific imaging that he was very clear that the Calais ER might not be able to handle, and the fact they don’t have a pediatric unit, or they might not have the specific antibiotic that he wanted her to start - that combination he advised to skip over Calais and go straight to Portland so that her care team could personally handle it.

(Skipping over Bangor entirely because while they’ll have the antibiotic- he didn’t think they had a pediatric surgery department that could handle her complexity)

While packing up to take Juliet to Portland after speaking with the on-call doctor Juliet’s g tube started another episode of bleeding that took 5-7minutes of trying to get under control. That was enough of a scare for me so off to the Calais ER we went.

By the grace of God- the very specific antibiotic that he wanted her to start WAS on hand in liquid form which meant we could start it, go HOME and see if it improves with the antibiotic before having to go to Portland.

PHEW!

Again, our local ER is not fancy but we’ve always had a great experience with friendly staff and Doctors that aren’t intimidated by calling her team and letting them lead the care. We are so thankful for them!

Hopefully this antibiotic starts working fast and gives Juliet some much needed relief and we can avoid another surgery.

🩵🐞🩵

11/30/2025

Phew.

The last day and a half have been rough.

Friday morning Juliet started puking which catapulted a whole whirlwind of a sickness spiral.

All errands, to-do lists, and plans stop to a screeching hault as we not only tend to a sick toddler- we call nursing lines to her Complex Care Clinic for assistance managing her care to avoid another ER trip or her 14th LifeFlight.

Vomiting, intermittent fever, high heartrate (even while sleeping!) and fatigue were her primary symptoms.

Her medical team is phenomenal and helped walk us through changing up her feed rate/dose to try to keep her hydrated.

It’s a fine line between giving her enough but not too much or too fast to make sure she keeps it down.

We finally discovered that having a really slow rate AND doing 50% g tube feed & 50% Pedialyte with a smaller total volume was what she needed to keep it down.

To keep it PG on here, the most current theory is that she is SEVERELY constipated so we got medicine & a clear regime to help her out.

When she is this sick, meeting her daily hydration goal takes precedence and her caloric goal is out the window. We can recover her calories after the illness but if we don’t make sure she’s hydrated it will lead to much larger problems, including her ability to get better.

Today she is acting more like herself and hasn’t slept most of the day like yesterday. She also has been able to keep down her modified feeds & Pedialyte which is a great sign!

Hopefully we continue to be on the recovery end of this illness!

🩵🐞🩵

11/28/2025

Happy Thanksgiving!

11/15/2025

🍂Juliet is the ultimate yardwork enthusiast. She was over the moon to "lend a hand" to her brother with his share of the raking this morning!

🏥We have a week coming up packed with appointments that includes traveling to Portland to meet with 2 of her specialists and an echocardiogram.

❤️Juliet has a vein on the side of her neck that for the past few months has been protruding significantly more then her usual so we’re going to do a little bit more of a thorough work up just to make sure all is well. In some cases, a bulging neck vein can be an indicator of a circulation / cardiac problem. Considering Juliet’s history her team is taking the precautionary route and check it out which we are always grateful for. Her team is amazing and we are so thankful for them!!

Thank-you all for continuing to think about / support our little miracle!

🩵🐞🩵

11/01/2025

Today we celebrated our miracle turning 3!!

Juliet, you amaze me.

You are feisty, bossy and bold! Everything you needed to survive.

We love you!!

08/15/2025

The laughter we prayed for. The joy we fought for.

From surviving to thriving.

Juliet, watching you soak up this summer with pure, unadulterated joy has been nothing short of magical.

Thank you to everyone who has prayed, supported, and encouraged us along the way.

Special thank you to Nana and Mimi who have taken us on some unforgettable trips this summer!

🩵🐞🩵

07/07/2025

Summer time! ☀️ 🌊

Juliet is truly living her best life these days!

Swimming lessons 3x / week while still keeping up with her amazing therapists 2x / week! (Thank you Mimi and Aunta!)

We even have some fun trips planned for this summer!

These are the days we dreamed of and longed for when she was so sick and spending so much time in PICUs.

We are so thankful for her health and the community around us that have supported us along the way. ❤️

Here she is doing one of her daily breathing treatments ahead of her busy, and fun-filled day today!

🩵🐞🩵

05/06/2025

Today we have two appointments for Juliet to go over and test for some concerns we have with episodes she’s having at night.

Prayers please!

🩵🐞🩵

04/22/2025

I always seem to forget how much anesthesia effects our little girl.

Yesterday after leaving the hospital, Juliet was incredibly tired, and irritable which meant we went back to the Ronald McDonald House a lot earlier then we planned and just DoorDashed supper.

Even after we ate, Juliet was super fussy so I took her back up to the room and she fell asleep really fast which is super unlike her usual self who we have to beg to go to sleep.😅

Her airway evaluation yesterday was positive! They said that the graft looked good! There was no change from the previous evaluation which is exactly what we want! 🩵🫁

The issues with her sleep, must have a different origin that we will have to continue to figure out.

Thank you for all of the thoughts and prayers!

🩵🐞🩵

Juliet’s Journey

01/12/2026

01/03/2026

01/01/2026

12/29/2025

11/30/2025

11/28/2025

11/15/2025

11/01/2025

08/15/2025

07/07/2025

05/06/2025

04/22/2025

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