Tuesday, August 13, 2013

Waiting

Waiting

Originally posted August 2013 | Updated for new blog

Reflection: This post captures what I think a lot of NICU families and support people feel: that aching, restless *pause*—where you’re just sitting with your emotions, not knowing what to do or say. “Waiting” became its own kind of emotional labor. It’s something we don’t talk about enough. This entry is short, but it held a lot of weight back then. It still does.


There’s not much to say today.

I know Maliyah’s on ECMO. I know things are serious. I know my sister and her partner are doing the best they can.

But I don’t have any updates. I haven’t heard anything.

I’m just… waiting.

Waiting for a phone call.

Waiting for good news.

Waiting for this part to be over.

And in that waiting, I’m holding my breath. Hoping. Praying. Refreshing my phone more than I want to admit.

If you’re reading this and you’re waiting too—thank you for being here. Thank you for hoping with me.


Reflection: Waiting is one of the hardest parts of any medical journey. It’s the part no one prepares you for. You don’t get a manual for how to hold space when there are no answers. And while I wouldn’t wish that kind of wait on anyone, I’m glad I wrote this down. I want other people—especially aunties, siblings, chosen family—to know: your love matters, even when you’re on the outside looking in. Keep holding that hope. It’s sacred work.

ECMO – A Rollercoaster of Hope and Fear

ECMO – A Rollercoaster of Hope and Fear

Originally posted August 2013 | Updated and migrated to new blog

Reflection: Reposting this years later still hits me right in the heart. I remember the anxiety, the constant updates, and the way I clung to hope. Watching someone you love go through ECMO is terrifying—and for my niece, it was a lifeline. I wanted to document everything at the time, not just for us, but for other families going through it too. Looking back, I still feel every emotion in these words.


Yesterday I updated the Team Maliyah Facebook page more times than I ever have in a single day.

The day before, Maliyah had been having some trouble with her oxygen and blood pressure. They were weaning her off of the nitric oxide and increasing her vent support, and she just wasn't tolerating it. That night, they even tried putting her back on nitric oxide, but it didn’t help like they had hoped. So around 5 a.m. they told my sister and Matt that they were putting her on ECMO.

They explained that ECMO (Extracorporeal Membrane Oxygenation) is a machine that does the work of your lungs and your heart. It allows her lungs time to rest and heal without having to work so hard. They placed a large tube in her neck and one in her groin to pull out her blood, oxygenate it, and then return it to her body. It sounds simple when you say it fast, but it's one of the most intense things a newborn can go through.

There are risks—serious ones. Bleeding, infection, clotting. But for babies with CDH, sometimes it’s the only option to give them a real chance.

She’s doing well on ECMO now. Her numbers are improving. She looks more relaxed. The doctors and nurses are amazing, and my sister is holding it together better than I ever imagined possible. I know how scary it is for her. For all of us.

I’ve learned that every day in the NICU feels like a lifetime. One minute you’re hopeful, the next you’re spiraling. But Maliyah is strong. Fierce. She has a whole team cheering her on and loving her fiercely from near and far.


Reflection: ECMO was a word I had never heard before this experience, and now I’ll never forget it. Watching my sister go through this with her first baby opened my eyes to how fragile—and resilient—life can be. If you’re reading this and going through something similar, know that you’re not alone. Your fear is valid. Your strength is real. And even the tiniest babies can fight like warriors.

Tags: CDH, ECMO, NICU, Baby Maliyah, Family Journey, Premature Birth, Medical Story, Auntie Life, Reflections, Team Maliyah, Infant Health, Healing and Hope

Thursday, August 1, 2013

When Silence Hurts

When Silence Hurts

Originally posted August 2013 | Updated for new blog

Reflection: I debated whether to include this one. It’s raw. It’s uncomfortable. But it’s real—and that’s what this blog has always been about. The helplessness I felt not being able to be there, not knowing what was going on, was so heavy. And that fear mixed with trauma can do strange things to family relationships. I share this now, not out of blame, but because I want other people supporting NICU families to know: sometimes the pain isn't just medical—it's emotional too.


I haven’t heard from my sister all day.

I know she is overwhelmed. I know she has a baby on ECMO, and doctors, and nurses, and decisions to make—but it doesn’t make the silence any easier.

I have supported her from the beginning. I’ve taken her calls at 3 a.m., updated the Facebook page, organized support, and answered questions. I’ve been here. I’m still here. But I’m starting to feel shut out.

I know I’m “just the aunt.” But I love that baby. And I love my sister. And it hurts not knowing what’s going on. It hurts not being able to do anything. I want to believe the silence means things are stable. That maybe there was nothing new to report today. But when you’ve been living hour to hour in the NICU, no news never feels like good news.

I also want to say something to the people who are following this story: thank you. Thank you for reading, for caring, for praying, for holding space even when the updates are small or hard or don’t come at all. It means more than I can say.

Tonight I’m just hoping to hear something. Anything. I know I’m not entitled to answers, but I wish she knew how much this silence is hurting.


Reflection: Looking back now, I understand more about trauma responses and family stress. I know my sister wasn’t trying to hurt me—she was probably just trying to survive. Still, I think it’s important we talk about how support people—siblings, aunties, close friends—sometimes feel lost and invisible in medical crises. If you're in that space, I see you. And I hope you give yourself the grace to feel it all.

Saturday, July 13, 2013

Meeting Maliyah: A Night I’ll Never Forget

Meeting Maliyah: A Night I’ll Never Forget

Originally written in 2013 | Updated 2024

Reflection: It’s hard to revisit this story now. So much has changed. My sister and I are no longer close—our shared trauma pulled us in different directions, and sometimes the damage runs so deep it can't be repaired. I’ve made my own mistakes, I know that. But I hope that, wherever she is and however she feels, she knows that I always wanted the best for her and Maliyah. My intentions have always come from a place of love. They still do.

On July 9th, 2013, my sister went into Boston because she was experiencing what she thought were Braxton Hicks contractions. I knew that with CDH (Congenital Diaphragmatic Hernia) babies, there was always a risk of early labor, but my sister was determined her baby would stay put until the scheduled induction date.

So, when she came home that night—still contracting but insisting they weren’t real—I was in disbelief.

The next day, I insisted on going over to my parents’ house to see her, bringing my two kids with me. I’m so glad I did. I remembered what it was like being pregnant with your first—it’s hard to tell when those "practice" contractions slowly turn into the real thing.

Michelle was clearly uncomfortable, lying on the couch nearly in tears, still insisting the contractions weren’t painful, just “weird.” But something didn’t sit right with me. I called her doctor’s office and told them she was still having consistent contractions. They called back two minutes later: “Head to the hospital now.”

I rushed to help them pack for the two-hour drive—three pillows, a blanket, and whatever I could think of last minute. Michelle still swore she wouldn’t be delivering yet. My parents told me, “This is her first baby. Labor will take at least 12 hours.” But in my mind, it had already been 24.

Since I don’t drive, I was at the mercy of my mom and aunt. Long story short—we arrived 10 minutes too late. She was already pushing. I was heartbroken that I couldn’t be there to hold her hand, yell at a nurse on her behalf, or coach her through contractions. But my little sister did just fine—with her partner by her side.

We finally got to see Michelle around midnight. My mom and aunt left. My grandmother and kids were already asleep, and I had no idea where I was going to sleep myself. But I didn’t care. I wasn’t leaving until I saw that baby.

Matt had been with the baby since the moment she was born, so I stayed with Michelle. She was surprisingly patient with the nurses—though clearly eager to see her daughter. Like any brand-new mom who’s never experienced an epidural before, Michelle insisted she could stand up and walk. I wanted to laugh (I was her just two years ago). But we insisted on the wheelchair, and with help, we got her settled and headed down the hall.

And there she was: Maliyah. 4 pounds, 8 ounces. So tiny, so beautiful. Despite the tubes, she looked like any other newborn. I was overwhelmed with emotion. Seeing her made every delay, every minute of uncertainty, completely worth it.

That night reminded me of how powerful those first moments are. And how much love and strength flows through our family—especially when we least expect it.


Closing Reflection: This story is a memory I hold close to my heart, even as time and distance have changed the shape of our family. I don’t know what the future holds, but I do know that love—real love—shows up when it matters. And that’s what I tried to do. This post is not just about Maliyah’s birth. It’s a reminder that even if relationships change, the love behind those moments still matters.

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