Milanah’s Micro Journey

11/04/2026

I knew it.. Yet until there’s a fever or she needs oxygen there’s usually not much I can do besides wait. I hate that part. I gave it a couple of days, but by Monday night her oxygen levels were hovering right around the threshold where she typically needs oxygen. Her heart rate was elevated, she coughed all night long. But still no fever, no working to breathe besides the tachycardia. I knew taking her in early meant risking it not being caught yet. But I also didn’t want to sit around waiting for it to completely take her down. After what is now 19-20 rounds of pneumonia I’ve had more practice than I’d ever wish for. I am officially a pneumonia extraordinaire, if you will..

We got to the hospital and did an X-ray. When the doctor came back she said she didn’t think she saw any signs of pneumonia, but the radiologist still needed to review it. We decided to do a swab, and by the time the doctor returned the radiologist had reviewed the X-ray. It was an early pneumonia.

The doctor commended me for knowing my girl so well and recognizing the signs so early. “It looks like you’ve had quite the journey” she said as she complimented me again on knowing my child best. But after almost a year of not having to know those parts of her it meant more than I can explain to have someone recognize the depths we’ve had to go together to be here. This isn’t necessarily the kind of knowledge or skill I thought I’d be walking around with one day. It’s not the kind you set into motherhood thinking you’ll acquire either, but to a select handful it happens.

I wish I didn’t know that cough. I wish I didn’t know exactly what to watch for, or how quickly things can change. I wish I didn’t have to look at her and feel her light draining… I wish I didn’t have so many experiences to draw from.
I wish I had learned to know my daughter in all of the ordinary moments of motherhood instead of through scary times that came over and over before this. But in my collection of moments, and my mom made encyclopedia on her I learned to trust my gut. And while I’d love to have lived a life with her so blissfully unaware of the need for anything of the sort I’m so grateful to have it today.

08/28/2026

Sometimes motherhood looks different than the one we imagined. I’ll never forget being thrown into a world I knew absolutely nothing about.
And sometimes it’s in the motherhood we never planned for that we discover just how much we’re capable of. The places we never expected to be are often the places we grow the most.

I never would have chosen this path for us but I’m proud of the mother I became walking it. I’ll never forget what it felt like to be stripped down completely and somehow become everything she needed me to be. Now people can look at her and never know.

They see the little girl running, laughing, growing and living her life. They don’t see the incubator. The monitors. The oxygen. The hospital rooms. The fear. The years filled with hospital trips and stays. The version of me who learned how to function while terrified.

She may not look like she was a micro preemie anymore. But I’ll always remember the little girl who was and the mother I had to become alongside her.

08/16/2026

Just the two of us. 🤍

08/15/2026

08/15/2026

It’s been a while. We’ve been busy summering.

There were years when I couldn’t imagine motherhood without the constant worry attached to it. Even when Milanah was good I was waiting on alert because it was never long until the next sickness found us.

This summer it was just Milanah being Milanah.
Growing taller, losing teeth, swimming, making mud cakes, beach days, having her first weekend away sleepover, being silly and happy and wonderfully beautifully ordinary. She spent so much of her little life having to be brave before she ever should have known what brave meant. And this summer she wasn’t forced to be brave once. Brave was on her own terms for once in her little life….. She just got to be five.

I’ll always carry the version of me who was terrified of what her future might look like. Especially after so many years of sickness. Last summer was tough, I felt defeated and scared. If I could go back to last year and show myself these pictures I’d tell her to just breathe and keep going. I’d tell her the days of normalcy she tearfully prayed to God for were on the way.

What a difference year can make. 🤍

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08/15/2026

Summer so far. 🩷

These months of good health have allowed Milanah’s body to do so much growing. I’m really seeing it in both her height and her weight, and it’s such a beautiful turnaround to be living in.
Last summer she was still frequently ending up with pneumonia, and I was still living in that constant fight or flight mode. Last year was exhausting. When summer rolled around and she was still getting sick so often I was scared of what the future might hold for her. I never could have imagined that just one year later she would be doing SO much better. 🥺

This summer Milanah graduated senior kindergarten, she lost her first tooth and then her second, started swimming in the deep end of the pool (with her floaties, but a win is a win 😂), made endless mud cakes, had lots of beach days, and had her first weekend away sleepover with her Aunty Loretta and Uncle Bill.

Yet one of the biggest milestones of all? She hasn’t been sick once this summer.

What a whirlwind of a difference from last year.
I guess sometimes no update really is the best update. Maybe we’re finally out of the woods? (Is it safe to say that here now?) Maybe this is the part of life where we get to just “be” instead of constantly fighting our way through.

It took me a while to settle into normalcy. For a long time, normalcy and good health actually felt uncomfortable because I wasn’t used to them. As a medical parent IYKYK. Now do not get me wrong… I was over the moon that Milanah was finally experiencing the good health we had fought years for. But when your brain has spent years getting used to chaos sometimes calm can feel unsafe. And I’ll admit I struggled so much with that.. I remember crying to my mom because why did good health for Milanah feel so anxiety provoking in the beginning? I truly felt like I had to learn how to be a different kind of mom. Because before that my whole motherhood experience had rooted and grown through extreme situations.…It’s like a lotus flower that learns how to grow in the mud. It grows roots there, It learns how to survive there. And somehow despite the environment it was given it still manages to become something beautiful. But what happens when you suddenly take it out of the mud? When you cut those roots free and place it in clean still water? The water is safer. It’s everything you hoped for, yet the flower doesn’t know that yet. All it knows is that the environment it learned how to survive in is gone. I think that’s what this last season of motherhood felt like for me. I had spent years learning how to be Milanah’s mom in the mud through hospital stays, sickness, fear and constantly having to fight for her. Then suddenly we were placed in clear water and I had to learn that I didn’t need the mud anymore. I could stop surviving and trust that maybe we were finally safe enough to just grow.. It took time. Maybe that metaphor makes sense to some or maybe just me I don’t know. But I wouldn’t be honest if I didn’t share that part of this whole experience because I feel like other medical parents could relate.

For the first few months I struggled with that more than I expected. My brain had spent four plus years staying on alert, always waiting for the next illness, next hospital visit, the next thing I would have to watch her experience. But I can finally say it’s been calm long enough that my brain has settled here. The calm doesn’t provoke anxiety anymore. I’m not constantly waiting for the other shoe to drop, maybe this really is our new normal. And after everything it took to get here, what a beautiful normal it is.

06/11/2026

This morning while doing Milanah’s hair in the bathroom mirror, she asked me why she has one big nostril and one small nostril. Immediately, my mind went back to my tiny little one pound baby in her incubator literally fighting for her life. The flashback was wild.

When she was born I was told she might be too small to even be intubated, that the tubes might not fit. Thankfully they did. But after months of life saving support, there ended up being a small difference between her nostrils.

And leave it to Milanah to notice.

I told her it was because she was a warrior, and that one day she would fully understand exactly what I meant by that. I told her she was absolutely beautiful and that it was part of her story. Everyone has something that makes them unique, and that’s one of hers. On the inside though, I didn’t quite know what to say. Sometimes it’s so surreal being on the other side of it all. Like a strange dream. Yet little pieces of the reality we lived through still remain.

The mother bear in me immediately wanted to ask if someone had commented on it, or if she had simply noticed it herself.

When she asked me about it I was immediately flooded with memories of why, but how would I explain it properly? Because to me, that tiny difference isn’t something I see when I look at her.

I see the most fragile few hundred grams of determination.
I see 132 days of fighting in the NICU, that turned into many more years beyond that
I see a little girl who was never supposed to have it easy and didn’t for a long time, yet somehow has the most beautiful/bright little soul.

What she sees as one nostril being bigger than the other, I see as a reminder of just how hard she fought to be here. I don’t know if she’ll remember asking me that question years from now. But I’ll remember it.

Because for a moment, I wasn’t standing in my bathroom. I was sitting beside an incubator again, watching my tiny baby fight for her life.. And then I looked back at the mirror and saw the same little girl staring back at me. Sometimes that’s when it really hits me how far we’ve come.

06/01/2026

Today I bought the tutu

Did we need it? Another one? Absolutely not.

But this one is blue, and pretty, and she just had to have it. She lit right up when she saw it.

We must already have at least 8 others at home..

But one day she won’t light up with excitement and joy and tell me that we simply must get it… One day she’ll walk right past those things because she’s too cool, and too old.

So yes, I bought the tutu. Because one day she won’t ask me… And I’ll wish so badly that I could go back and buy a few more.

So today I bought the tutu, for her and for my future self… 💙

05/30/2026

You only get 18 summers with your kids..
And this one right now is one of them, if that’s not perspective I don’t know what is.

05/28/2026

My little petunia 🥹🥹🥹🥹

Last night I went and got her from her bed and brought her into mine. Sounds crazy? It’s kind of our thing. For a long time she slept beside me, especially when she was sick. When she started going back into her own room, I’d always tell her, “If you need me, you know where to find me.”

Some nights when I tucked her in, she’d say it right back “If you need me, you know where to find me… just come get me and bring me into your bed.” 🥺

So sometimes I do. Just because.

And last night while I was carrying her down the hall, I realized how much bigger she felt in my arms. These months of good health have finally let her grow the way she was always meant to. It’s beautiful and heartbreaking all at once realizing how much her little body spent so long just trying to keep up. And now suddenly she’s growing so fast right in front of me.

Someone slow time down 😫