Milanah’s Micro Journey

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Milanah’s Micro Journey

1lb 1oz princess this is my journey

12/26/2025

Just a little Christmas magic ✨🎅🏽

It was definitely a little uncertain at times but thankfully Milanah pulled through and was able to be home for Christmas. It was a little quieter this year but we had a great time. I’m just so thankful she did manage to be able to stay home. ❤️✨🎅🏽

Wishing everyone a Merry Christmas filled with love, warmth, and the people who matter most. 🤍✨

12/16/2025

Thank you to everyone who wished my sweet girl a happy birthday. ❤️

12/14/2025

From the tiniest of beginnings to the most wonderful five year old girl!

Once upon a time I sat beside machines, praying for strength i never imagined us both needing so much of. There were moments I didn’t know what tomorrow would look like, or if it would even come with her in it. But i always knew that I’d never stop fighting with her.

In 5 years of life she’s faced such unimaginable things sometimes over and over again yet she’s still the happiest, lightest, kindest little soul. Shes survived things that nearly broke me to just watch and I’ll never stop being in awe of her.

To think this is the same baby girl. The same brave heart. A thousand silent battles, pokes, prods, tubes, and wires are hidden behind her big infectious smile. She was a miracle long before she ever knew what one was. And every single day with her since has been a gift I’ll never take for granted.

She is the most beautifully bright outcome of a story that could have gone so many ways, so many different times. She is my greatest victory, my sweetest blessing.

“You’re my dream come true,” I tell her most nights st bedtime.

“You’re my dream come true too mom!” she says back.

But she has no idea the depth of what I mean.
How blessed I feel to be her mother.
How blessed I feel to have had five years of her, and how seriously I take my roll as being her mama.

I hope five is good to my sweet girl.
I hope its her healthiest year yet❤️

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. 💕

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London, ON

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