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

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.

05/28/2025

In the NICU nurses would talk about how micropreemies could go from 0 to 100 so quickly.. I thought that would eventually end but it’s proven true for Milanah consistently the last few years.. I could tell she was getting a little sick on Monday, but I didn’t know that we’d spiral so low that same night. I got home from work at around 10pm and she was still awake saying she didn’t feel good. I plugged her into the monitor and she was low, but not needing oxygen yet. I knew she’d need it once she fell asleep. Which she did, my poor girl coughed every minute of the night. That chest shaking rattly cough I’ve come to know as pneumonia. Not the pneumonias she easily but the ones that made her so sick just hearing the cough I knew immediately. She was unable to sleep, absolutely drenched with sweat, needing up to 2L of oxygen that I’d try to bump down once we got over the hump. Her breaths were so short and tight, when I peaked in her pyjamas and saw her little body working so hard for each tiny tight breath I knew it was time to go to the hospital. They took her in right away and gave her a round of dex and 12 puffs of salbutamol. The X-ray showed bilateral bacteria pneumonia, significantly on the right but it had made its way into the left lung too. The 10th time.. But this one sounded way worse than any others she’s had in the last 6 months. Drs wanted to see her work of breathing improve before we could go back home so they monitored her for the day. Once the dex started to kick in her sats improved and she was able to work less for those breaths once she was stabilized after a few hours of remaining on a consistent flow with consistent sats we were able to go home but only on the notion I’d rush her back if she was working to breathe again or taking small short breaths even with the oxygen.

She’s on a 10 day course of antibiotics and we got a round of Dex to give at home tomorrow. I’m hoping she can beat this at home without being hospitalized. Having a sick child is so much harder than having a sick baby, she’s already agitated and not feeling well she was not happy to have to wear her oxygen. Some days she understands it helps her more than others..

04/24/2025

Happy home day to my tiny girly!

After a long 132 days, I got to bring my baby home on this day four years ago. There were points where I had no expectations on ever bringing her home, I’ll never forget trying my best to make peace with the fact that maybe our relationship would never leave the NICU. Maybe I’d leave with just memories and a broken heart. But time went on, nurses and doctors worked diligently to care for her daily, and each day she got a little stronger and a little closer to going home. Through all the ups and downs, the set backs, the absolute high velocity kick backs, and the tiny little wins you almost need to use a magnifying glass to focus on, I did get to bring her home.

Four years ago she came home, and I’m so thankful for that. I didn’t know who she would grow up to become but four years later I can say she’s absolutely everything I ever could have hoped and dreamed for back then. She’s the loudest, proudest, smartest little light in so many people’s world. She is gentle and kind but she will 100% speak her mind. I hope she always stays that way. I remember being so worried wondering if she would ever walk or talk.. Well some days she talks so much I have to remind myself of the times I wondered if she ever would.

Even though she hasn’t had the smoothest journey since being in the NICU she’s always come out on top. She really is the happiest child despite everything and I’m so thankful to have brought her home on this day four years ago.

Happy home day my sweet warrior girl!

❤️🙏

04/08/2025

Today Milanah woke up and just seemed a little off. I took her temperature while she was eating breakfast but she was fine. When I dropped her off at preschool she was having a hard time so I picked her up early thinking she was just having an off day. When we got home she played a bit and then asked to lay down and watch a movie. She felt warmer this time so I took her temperature again and this time she did have a fever.

I laid her down in my bed and put a movie on while I folded laundry beside her. I asked her if she wanted me to get her anything and she said “yes my spooky, and my toe monitor (o2 sat) and my oxygen” .. Oxygen!? I kind of brushed that request off and told her I didn’t think she needed it but that we would hook up her monitor to check. I got the monitor out and to my surprise she was actually below her healthy range for saturation and was needing some oxygen.

I was blown away at how in tune she is with her body.. There were no other signs for me that she would be low. No cough, no congestion, just a fever. A fever that I was expecting may bring other symptoms in the next few days but for right now I wasn’t expecting that. I’m so proud of her for knowing what she needs and voicing that to me at her age.

I guess this is a new phase of parenting a child with chronic lung disease. Not a baby, not a toddler, but a child. A small human who knows her own body, her own needs and who will now voice to me when she feels she needs it, instead of me always waiting for the obvious signs.

She really is the strongest, wisest little girl. ❤️

.

04/04/2025

Just a spring time girly 🌼✨🌸

03/11/2025

Late post.

Life has been a bit chaotic lately. Between Milanah being sick and us moving the last two weeks have been a blur. Thankfully the scarlet fever/strep was easily healed with some medications, unfortunately the same medications caused Milanah’s whole body to break out in hives days later. They were so bad I had to take her back to the hospital. My poor girl was itching like never before. The hives lasted a couple days before finally subsiding. Thankfully she has been fully back to herself this week! 🙏 we now have to go through some testing at the adverse reactions clinic because she is allergic to amoxicillin. We’ve had this thought prior and slowly introduced amoxicillin back in after a few years of using other meds but now it’s very clear and we won’t be using anything with amoxicillin anymore.

On another note Milanah and I said goodbye to the place she was raised in. It was bittersweet because we certainly outgrew it, but it held so many memories. It was the place I got on my own with her shortly after she came home from the NICU. It was the home my little baby had all of her firsts in, the place I so excitingly brought her home to every-time she was admitted. It was the place where my little baby turned into a little girl. There were almost 4 years worth of love, laughter, joy, and sadness in the walls of that house. As much as it was loved we were ready to move on. We’re still settling into our new place but it’s been a smooth transition for both Milanah and I which makes all the difference. ❤️

We recently got a tonie for her new room and I couldn’t wait to give it to her! So far we have the playtime puppy, and a Dora one. Can any mamas recommend some good imaginative/storytime tonies!?

Milanah’s Micro Journey

07/28/2025

07/28/2025

07/25/2025

07/08/2025

06/17/2025

06/16/2025

05/30/2025

05/28/2025

04/24/2025

04/08/2025

04/04/2025

03/11/2025

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