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

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.

07/28/2025

Just a girl and her kitty purse 🐱

07/25/2025

I’ve spent the last few days completely wiped out. I’ve caught colds here and there when Milanah’s been sick, but this was on a whole different level. I was out of it.. weak, nauseous, and barely able to move.
But what completely blew me away… was how my baby stepped up. From the moment she saw me so sick, she went into full caretaker mode no hesitation, no fear.. She rubbed my back, snuggled up beside me, made sure I had “the coziest blanket” on the couch, brought me water, made sure I was drinking that water, and brought me a bowl just in case.

Every time I moved too quickly she would calmly say, “Get the bowl, Mom… get the bowl.” As she rubbed my back.

At one point I didn’t make it to the bathroom in time, and after finally getting there, I was stuck for a few minutes. When I finally came out, I braced myself to clean up… Only to find it had already been done. She looked up at me and said softly, “I already cleaned it up, Mommy. You just lay down.”

Cue my tears. 🥹

I still went over it again myself, but just knowing she chose to do that despite how sensitive she is to smells and textures. It absolutely floored me. I literally cried. That’s not something I’d ever ask of her. But her instinct was to care for me. I was sad at first that she felt the need to do that but then I realized it came from her heart. From a place of pure love and care because that’s what I so often do for her and it’s normal in our house.

Throughout the day she kept checking in: “How are you feeling now?”
“If you take some medicine and nap, you’ll feel better! I’ll be right here when you wake up.”

It hit me so hard… because this is exactly how I care for her, and now the roles had reversed. It made me realize just how grown up her heart already is.

It’s always been just us and while I never want her to feel like she has to carry that kind of weight the love, empathy, and strength she showed these past few days were something I’ll never forget. Being sick is such a normal thing to her, and it’s always me caring for her. I guess it’s created some kind of normalcy for her to feel the want to step up and do that for me.

I don’t know what I did to deserve her but I’m so thankful

07/08/2025

✨Preschool Graduate!✨

My sweet girl graduated preschool and is off to kindergarten in September! 🎓💖 Even though pneumonia tried to dim her shine (yes again)! She powered through and made it to her little graduation celebration with her friends and educators.

This girl continues to show so many what strength looks like. I’m hoping she can remain healthy for the remainder of the summer in order to give her lungs a chance to literally just chillllll before the chaos of a new viral season.

Here’s to the next big chapter, baby girl! Kindergarten, here she comes! 📚🎉✨

06/17/2025

Pt. 2

I don’t often let myself feel upset. Honestly I genuinely don’t feel anger or bitterness in regards to this often. I feel thankful for her cognitive and physical capabilities and just try my best to stay in that place. But as the days have gone on, I’ve tried not to think about the appointment because when I do, i get this gut punching lump in my chest and I feel upset… There was one time in her NICU days that I got into my car in the parking garage and just screamed for a minute or two. I was angry for the first time instead of sad. I almost feel that same exact way again.

I feel upset that four and a half years later my sweet girl is still dealing with the repercussions of extreme prematurity. I feel upset that it’s not gotten better but it’s continued to get worse. I feel like I should have kept her in a bubble but I’m told the exposure has been good for her, and believe me I’ve asked every step of the way.. It doesn’t seem like it was good for her, but I can’t go back and change anything. I’ve asked if keeping her underexposed for the summer would give her some healing time before starting school but usually these are her healthy months so we’re going to pray that theory aligns itself accordingly and Milanah can enjoy her summer, and her friends to the fullest.

Milanah’s respirologist wants to start seeing her every 3 months again instead of every 6 months. It’s never good to be moving back to more frequent specialist appointments when the goal has always been to be discharged by now. In the meantime she’s starting a twice daily puffer and a medication to hopefully dry up some of the fluid out of her lungs. Milanah has been a champ and chews up the pill with no hesitations.

The only good thing that came out of the CT scan was her upper lobe opacities from 2023 improved. However with everything else worsening it’s hard to even be happy with that when there’s so many other things going on.

06/16/2025

Pt 1.

Last week we got the results of Milanahs CT scan and unfortunately they weren’t great..

It showed worsening of her chronic lung disease / BPD since the last CT in 2023. It also showed some pretty floppy airways which can be caused by damage or by prematurity itself. One of her airways into a lung was quite small and basically closed at times. She now has something called bronchiectasis and atelectasis-scaring, which further reduces lung function and capacity.

As if that wasn’t enough, she has quite a bit of mosaic attenuation.. Basically her lungs are so filled with fluid and some solid white masses that were never there prior. The doctor wants to check on her heart to check for pulmonary hypertension to make sure that is not the cause of the increased mystery fluid in her lungs. The solid white is also directly to the right of her heart.

She did have pulmonary hypertension as a baby but it improved with medication, oxygen, and time. However now with her experiencing so much sickness this year her heart could be showing signs of stress and causing fluid to build up in her lungs.

Whenever the stressed heart conversations arise I feel panic surge l through every single blood vessel in my body. It’s like an electric shock that goes into each finger tip and toe so quickly. My eyes watered instantly. Usually I either freeze right there or the flood gates open. It’s an uncontrolled reaction. This time I froze. A million thoughts and feelings swirled for a few seconds that seemed like minutes as the doctor kept talking I had to remind myself to stay in the moment and listen.. I probably looked like a deer in headlights just sitting there watching her mouth move but not hearing what she was saying for a minute. I felt this overwhelming feeling of unfairness. Maybe bitterness? Maybe I just didn’t want to keep spiralling so I chose to let myself feel a bit of anger instead of sadness.

When we didn’t hear back right away I assumed it was probably similar to the last CT scan so I wasn’t quite prepared to hear about so many different things going on..

05/30/2025

After the 2nd dose of dexamethazone yesterday Milanah had a great night, she even made it through the whole night without oxygen. But today she woke up and just seemed off, she looked so tired and her colour is worse. She just wanted to snuggle instead of play, after a few hours I hooked her up to the monitor and she slowly started dropping. I put the oxygen on to help her stay above 93 while awake. She was so tired this afternoon she fell asleep around noon. Quite quickly she needed to go up to 1.5L while sleeping… She doesn’t usually nap, or feel tired after waking up. My anxiety is starting to set in thinking about the pneumonias of the past that were so bad and weren’t healed with regular antibiotics.

I’m trying to tell myself she will be okay, she’s bigger and stronger than she was during those times, but I just feel in my heart this might be one of those times. When I looked at her this afternoon I just got this overwhelming feeling of discomfort and internal panic. Maybe it’s just me and some PTSD, or maybe it’s my “mom senses”.. I don’t know.

I’m hoping by tomorrow we will see more of an improvement. I don’t want to take her back to the hospital yet if we’re able to just ride the wave at home with our oxygen. Thankfully she’s not working to breathe again yet, but I almost feel like we’re not far from taking a turn into that direction. 🥺
April to September are usually her healthy months, I’m praying she can turn this around without another hospital stay and have the healthy summer she deserves. She keeps asking to go to the park and I keep having to tell her when she’s better or maybe tomorrow.. I don’t want her running around and over exerting herself while she’s already sick, I also don’t want to expose her to anything else that could tip her over the edge. I feel so bad for her, my heart feels heavy and sad saying no each time she asks because I know how happy it would make her to go for a bit. Sometimes all of this just feels so unfair.

Milanah’s Micro Journey

09/05/2025

09/01/2025

08/25/2025

08/03/2025

07/31/2025

07/28/2025

07/28/2025

07/25/2025

07/08/2025

06/17/2025

06/16/2025

05/30/2025

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