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Milanah’s Micro Journey, London, ON (2025)

11/13/2025

I know it’s been a while since I’ve shared anything about Milanah’s health… Sometimes it feels like every update is another heavy one. It’s a constant cycle of one thing after the other. Even though things have been calmer on the respiratory side, we’re still facing some unanswered questions.

We recently did an echo to check for pulmonary hypertension. If nothing shows, the next step would be a catheter procedure to measure her pressures directly. We’ve also been referred back to cardiology to see if her heart could be behind the strange desats and random high oxygen needs. She’s also going to be seen by a new GI specialist to hopefully get some clarity on her ongoing GI issues. And on top of that, we’ve been referred to complex care to hopefully help us along in this journey. Her respirologist told me that Milanahs lungs have not followed the typical path of her other ex prems… I wasn’t surprised, but it still hurt to hear. However I’m so thankful to have had the same respirologist follow her from the NICU all the way up till now. Although it would have been nice to say goodbye long ago, This doctor truly goes above and beyond in her care for Milanah and I’m so appreciative and thankful for that.

Today Milanah had a sweat test to check for cystic fibrosis. No poking or prodding was needed thankfully and she was SO brave the entire time. One thing about Milanah, she always shows up with more strength than most adults I know, including me. She has an EEG coming up in early December to assess her brain oxygen supply, I’m hoping that doesn’t bring up anymore surprises.

For now, we’re taking things one step, one test, and one answer (or lack of)at a time. No matter what comes next, she continues to amaze me with her strength. I’m hopeful that soon we’ll have the clarity she deserves.

11/03/2025

School picture day 🍎✨❤️

11/01/2025

Bunny by day, vampire by night 💜🧛‍♀️💜

Even though we both had multiple layers on Milanah was quickly over it 🤣 She enjoyed giving out candy more than getting it.

10/24/2025

My lil pumpkin pie butterfly 🥹💕✨

09/17/2025

Thankful for sunshine, bubbles, and better days. ✨🫧

Milanah is feeling a lot better. Her heart rate has come down, she’s not needing any oxygen but still has a horrible chest cough. I’m keeping her home from school this week even though she’s starting to improve because I don’t want her to catch anything on top of this. For now we’re just enjoying the tiny glimpse of summer that we have left.

09/15/2025

Yesterday evening was one of the scariest times we’ve had in a long time. 💔 My girl went into respiratory distress, even on 4L of oxygen, her sats were still only 81%. I quickly switched cords and machines thinking something had to be wrong with something else before I rushed to call an ambulance. Watching her little chest work so hard while I tried to stay calm was gut wrenching. When she woke up she was highly confused and shaking, she wasn’t able to stand for a couple minutes. Shortly after we weaned her down and she was back to herself.

In the ambulance I just sat there quietly, eyes widened, in pure shock. Halfway to the hospital I realized my shirt that I had thrown on so I wasn’t wearing pajamas was on backwards. At this point Milanah had fully come around and was asking the paramedic for pieces of tape.. Those type of bounce back situations just make you feel absolutely insane. I sat there feeling eerie from the adrenaline rush… trying to come to terms with what the hell just happened???

When we got to the hospital… She did a chest xray and she needed an IV. 3 nurses and myself had to hold her down while she screamed and cried, it was absolutely horrible. All I could do was sit there, hold her, and tell her how brave she was and that everything was going to be okay soon. I tried so hard not to cry because how scary would it be to have your mom, the person who is supposed to be brave cry too.. She’s never a one and done poke so the experience seems like it lasts waaay too long. I think that is the most traumatizing part for both her and I.
These very moments are the hardest part of being a medical mom. You’re literally watching your child suffer so that they can get better. Again, and again, and again. They are screaming for something to stop becaue it hurts while youre trying to tell them it will help… i can’t even pretend like last night didn’t shake me, it did. When I went home this morning to get some stuff and my car I just broke down crying on the drive back to the hospital. Not long after everything happened she was fine and talking away as if she didn’t just go down to 81% while being on like the max amount of oxygen I could even give her.

09/05/2025

Off she goes, my little kindergartener 🥹❤️

Be kind to my baby world 🥲

09/01/2025

🥲

08/25/2025

Today I bought the character shoes.

I’ll be honest they are not my vibe, they are not aesthetic, and I actually shuddered a little as I put them in the cart. They will clash with almost every outfit I’ve bought her, and they’re the exact opposite of what I would have picked for her.

But one day she won’t want shoes with sparkles or cartoon faces. She’ll care about brands, or what’s trendy, or maybe even what’s “cool.” But today, she just cares that her favorite characters are walking with her wherever she goes. Today these shoes are magic.

You should have seen the way she held them to her chest like they were treasure… If I didn’t get them I knew that there will come a day where I’ll wish with everything in me that I had said yes to the shoes that made her whole face light up, the shoes that made her voice get three notches higher and louder at the sight of them.

These silly little shoes aren’t just shoes. They’re a reminder that her childhood is fleeting. That her sense of style, no matter how bright or sparkly, deserves space to shine. That her joy matters more than my curated back to school outfits or my personal taste.

And I realized I don’t want to miss out on letting her be little because I was too caught up in how things looked. I don’t want her memories of childhood to be filtered through my taste instead of her joy. So today, I chose her happiness over aesthetics. I chose to lean into the magic of being little, of letting her make choices, of saying yes to the things that make her heart the happiest.

So I bought the shoes.
Because one day, I’ll look back and be so glad I did.

One day, those shoes will remind me of who she was right now a little 4 year old girl with big feelings, a big imagination, and a heart that just wanted to shine in her own way. And I’ll be grateful I stepped aside and let her. 💕

08/03/2025

Last night was a big win Milanah slept without needing oxygen, and today she had a bit more energy overall. She’s still carrying those deep circles under her eyes and her color is a little off, but I’m holding onto hope that the meds will continue to work and help her fight off this pneumonia.

To celebrate the tiniest bit of normalcy, we had a little girls outing to the nail salon. For the very first time ever, Milanah got her nails painted by someone who’s not me lol. I fully expected her to go for a shade of pink but nope! She picked a bold red, and her little heart was so happy. ❤️

Going to the nail salon with her was such a sweet experience. She really is my little bestie, I truly just love having a daughter.

I pray August is kind to my girl.
She deserves a month of calm, good health, joy, and just being a kid before the whirlwind of a new viral season and the big step into kindergarten.

Just one month of simple, normal summer days. Please. 🙏

07/31/2025

This is what the beginning of again looks like.

No fever yet. Just an X-ray to confirm and a doctor telling me what my heart already knew.

And just like that, pneumonia again. I can’t remember how many times now.. twelve or thirteen? Three this summer alone.
No matter how used to this I pretend to be, it still overwhelms me for a split second when the doctor mentions it. My eyes watered as he was talking about wanting to call respirology before treating her because of how frequently she’s had it lately. I thankfully held all the tears in this time, you’d think by now it wouldn’t be so triggering..But it is.

She had a great day yesterday, but then dropped significantly at night time. So with that and the advice of her medical team.. I just grabbed the hospital bag I keep packed and go. Because this isn’t new. It’s just again. And she doesn’t deserve any of it.

But she fights through it like she always does chatty as can be, brave, and full of smiles. She’s this way even at her sickest with multiple doctors and nurses crowded around her. It’s a blessing but it breaks my heart if I think about it for too long. She was more upset that her favourite ER nurse wasn’t there than anything else. She’s honestly such a trooper, she probably thinks we’re just there for the popsicles and stickers, as long as she’s not getting blood work or an IV she’s fully comfortable being there. It might sound sad to someone on the outside, but truthfully? That little bit of comfort she feels there makes all the difference for us. As sad as that is. I hear so many children who freak right out when the doctor even comes near, they likely rarely ever come to the hospital.. What a different world that is.

I thought that by this point in her life we’d be worlds away from all of this. I pray that she gets to leave all this behind her sooner than later.

I don’t want to always tell her how strong and brave she is, but in all honesty she is so much stronger and braver than anyone I know.

Hopefully she can kick this pneumonias butt quickly and enjoy what’s left of summer.
🙏

07/28/2025

These are supposed to be Milanah’s healthy months but this year, they’ve felt more like sample sizes. Summer flash sale teasers. Nothing that lasts long enough to catch a breath.

She’s already had pneumonia a few times this summer. And these past few days… I can just feel it coming again.. Her nose starts running, she starts getting these deep dark circles under her eyes that by the end of the day just look HORRIBLE. She’s vocalizing to me that she’s not feeling well, and that she’s more tired. I can feel the little rattles in her chest as my hand is on her back. Yet there’s nothing I can do until she gets a fever. So I just wait, I hook up the monitor at bedtime and watch her oxygen levels drop number by number as the nights go on until she starts needing oxygen again. I mentally prepare myself for the moment the fever pops up so I can take her in shortly after to get an X-ray and do everything
all over again….

I literally just watch it slowly start to drain her as the days pass. I can feel it in my heart every time.. It starts internally screaming
🚨pneumonia 🚨 pneumonia 🚨 pneumonia 🚨

It’s essentially my own little built in alarm system…. It’s like knowing someone is going to break into your house, but not knowing exactly when. So you just wait on the edge of your seat..

She’s still her happy go lucky self as per usual but I can feel her energy draining. I look into her eyes and I know what’s coming. I just never know how fast it’ll hit. So I just watch and wait until the infection exhausts her enough that her body can’t fend it off anymore. Usually it doesn’t take long, the same night she actually needs oxygen is usually the same night the fever strikes.

I move her into my bedroom, comfort her and do everything I can, knowing it will still never be enough to stop it from happening.

It’s a helplessness that literally picks away at you. It’s anxiety and heartbreak on loop.

And right now… I’m just sitting in that in-between space waiting for it all to go downhill.

Milanah’s Micro Journey

11/13/2025

11/03/2025

11/01/2025

10/24/2025

09/17/2025

09/15/2025

09/05/2025

09/01/2025

08/25/2025

08/03/2025

07/31/2025

07/28/2025

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