Shelly Myers’ Baby Boy Milo

My husband and I recently buried our 3-week old little boy Milo.

I know that’s a really rough way to start things off, but it’s the most recent part of our family’s story.

Our beautiful boy Milo was born on August 4th. He came into the world with too many internal birth defects and anomalies to count and was just broken on the inside. But his outsides were sure beautiful. Our doctors and specialists are still baffled at how healthy and normal he looked because most babies who are that sick look, well, sick. Milo’s brain was his only good organ, and we are so grateful because it’s what let him interact with us so perfectly throughout the special 19 days we got with him. Milo’s main issue was that he had a diaphragmatic hernia – this is where your diaphragm doesn’t form all the way and leaves a big hole that intestines, stomach and liver can squeeze through. They go up into the chest and don’t leave adequate room for lung and heart development, and those two things are ultimately what ended Milo’s life. He couldn’t breathe. And his heart just couldn’t sustain his body.

Not only was Milo’s short life miraculous, heartbreaking and beautiful, but the way he got here was equally amazing. Milo was born because of IVF. IVF that we won on the radio. From a random contest that we heard about one day while driving to church.

Crazy right?

 We had been trying to have a baby for about 7 months when we found out that my husband was missing vas defrens because he carries cystic fibrosis. Without your vas defrens, you just can’t get pregnant on your own. Period. So we looked into adoption and fertility clinics, which are both so expensive. We cried. A lot. We prayed a lot. And we carried this heavy, hard thing in silence… for months without really telling anyone. And then in fall of 2016 we heard about a radio contest giving away In Vitro. You had to submit a video telling your story and then get votes on Facebook daily for two weeks. The top 5 finalists interviewed with the fertility clinic and then a winner was chosen. It was terrifying thinking about sharing something so personal, so hard, and so tender with the world. But after a few long conversations and more prayer, we felt good about it. It would be worth it if we could get a little help getting our babies here.

A wonderful friend offered to film our video for us and the day came to post it and start voting.

 I still remember that morning. I was nervous. I felt sick. I just had no idea how it would all be received.

Honestly, it couldn’t have gone better. We were met with so much love, support and kindness – it was overwhelming. We posted daily reminders for two weeks… and then we waited. We got a call from the station and clinic saying we made the top 5 and that the doctors needed to do some initial interviews. We went in and met the staff – they were so kind and knowledgable. We did a few tests… and then we waited some more. In January of 2017 we got a call from the radio station. They said they were having the top 5 couples come in to do on-air interviews, and they wanted us to drive to the station in a few days. I remember feeling so excited. So nervous. We showed up and were taken to a private room. We were told each couple was in a different room, and that we’d each be taken in to the hosts separately. When we were taken in, Frankie and Jess greeted us and started talking about the contest and our situation. They played audio clips from our video and had us share a little about why we wanted to be parents. Then they gave us the greatest gift we’d ever received – they told us that we were the lucky winners. There weren’t any other couples in the studio, and we had won free In Vitro.

I cried and cried. And I remember feeling so much hope and gratitude and humility.

I had never felt so loved.

We went through our first cycle and got 2 strong embryos. We transferred the first in December 2017. We found out the day after Christmas that it didn’t take and we weren’t pregnant. Not the best Christmas on record. We transferred the second, our last embryo, the following February. We found out right around Valentine’s Day that it also didn’t take and we were again not pregnant. Boy do we know how to ruin a holiday or two.

We started over with a fresh IVF cycle that spring and the day before we were supposed to retrieve my eggs, we found out that my blood work showed a huge drop in my hormones and that my eggs wouldn’t be viable… so we had to terminate the cycle. We decided to take a break and try to get a little normalcy back (if that’s even possible).

In the fall of 2018 we started over again and ended up with 5 healthy embryos. We transferred the best one and found out we were safely pregnant. With our Milo. It had been 3 years of actively trying and we were finally pregnant. We went to one of those little “early ultrasound” places to find out gender. We did the big gender reveal with friends and family who had been invested in our family for so long and found out our baby was a boy. I’d always wanted to be a boy mom, so basically all my dreams came true in one beautiful, blue moment.

At our 20 week ultrasound the technician said everything looked great. We were finishing up the scan when she noticed one thing looked a little off. She got quiet. She scanned more. And then we started to worry. We asked what was wrong, and she said Milo’s heart and stomach weren’t lined up like they were supposed to be. She called in the doctor who confirmed things didn’t look quite right, and we were scheduled to see a specialist a couple weeks later.

When we went to our 22 week ultrasound, we were told that Milo looked like he had Trisomy 18. I had no idea what that was but was quickly informed that babies with T18 just don’t make it. Most usually live minutes to hours after delivery, if they can make it to delivery. Our doctor told us Milo had a lot of things that just didn’t look right on that little screen. She was kind. She hugged us. She may have even cried a little… I can’t remember. But my husband and I sat in that room and cried for what felt like hours. We were given the conversation about terminating my pregnancy but we could see our little man wiggling around on the ultrasounds and could see his heartbeat strong and steady and wanted to give him every chance we could… we wanted to enjoy being parents as long as we could.

We did a blood test so the doctors could find out more about our boy, and a week later were called by our geneticist. She said that Milo’s blood work miraculously showed that he did not have T18 or any other identifiable genetic issue. She was floored. I remember being so happy – this was good news! My son wasn’t given a death sentence. But the geneticist said that it basically just meant we had no idea why Milo was showing so many abnormalities on his ultrasounds… we were back at square one.

For the next four months we prayed harder than we ever have. Because our journey to get Milo had been so public, we shared the news of his rough road ahead with our tribe. And boy did they show up. We received so many texts, calls, letters and messages cheering us on… cheering Milo on.

I had never felt so loved.

Those months were filled with lots of prayers and lots of doctor appointments – more than I can count. I met with specialists. I had scan after scan and ultrasound after ultrasound. Milo was as active as ever, and despite his issues, was growing well. Because of Milo’s many genetic defects, I developed severe polyhydramnios. This is where the mom carries LOTS of extra amniotic fluid because the baby can’t drink it properly. I remember getting measured at one of my OB appointments, and my doctor said I was measuring 4-6 weeks ahead and that this was the size I would be if I were carrying twins. Needless to say, I couldn’t breathe or do much of anything those last few weeks – which was a huge change from my normally pretty active lifestyle.

When I went in to have Milo, he was too comfy to come out. I honestly don’t blame him – life was going to be hard once he got here. I was in labor for 60 hours at the hospital and in active labor for 14-16 (I can’t remember a ton of specifics because I have literally never been more tired in all my life). After going from 9 cm to 7 cm and back to 9 cm (this is not normal… but not much was about me and Milo), the team finally took Milo via c-section. He was delivered in a special operating room because the doctors knew he wouldn’t be able to breathe once he was delivered. There was a little window that the team passed him through that went straight to the NICU so that as soon as he was born they could get him on a ventilator and try to help him breathe.

I never heard my son cry.

While I was getting stitched up, my husband got called to that little NICU window. The lead doctor told him Milo wasn’t looking good and would probably only live for 4 hours or so. The nurses had taken a few pictures on my husband’s phone so that we could have something to remember Milo by. My husband brought his phone over to show me the pictures while I was still laying on the operating table. He tried to act tough but finally broke down and said our boy wasn’t going to make it. We both were taken to the NICU to see Milo. He was perfect. He was already intubated and was struggling to get the oxygen he needed. But after a visit with Mom and Dad, Milo rallied and found a second wind. That was our mighty boy. His lungs opened a little, and he was able to get his stats to a point that the doctors were happy with. They rushed him over to Primary Children’s Hospital and put him on a life support machine called ECMO that’s supposed to help with lung development. In non-doctor language, the machine basically oxygenates your blood for you so your lungs don’t have to. Then they can just work on developing.

Milo was on ECMO for 19 beautiful days. He went through multiple surgeries and procedures to try to repair all of his broken insides. He made it through the procedures like a champ, and the medical team was always surprised by our Mighty Milo. Because our journey to parenthood had been so public, we literally had thousands praying for Milo. We tried to share what we could on social media because so many people were invested… but it was also hard to think about opening up such sacred moments to the world.

There is so much more I could say about those three weeks in the hospital with our son. They were beautiful. They were sacred and holy. They were perfect.

We cheered Milo on every step of the way – so did all the NICU nurses that he had swooned. And so did our tribe of thousands. They continued to pray and send notes and cards and everything else.

But after 19 days, Milo’s little body wasn’t getting any better and other organs had started to fail. We had wanted Milo to tell us when he was done fighting and he finally did. He was tired and ready to be done.

Milo’s last day with us was also a first day – the first day we were able to really hold our son. The first day we were able to see his face without all the extra wires and tubes. It was so amazing. We held Milo all day long. We sang to him, read to him, fed him… the nurses “oohed” and “ahhed” over him. They all turned into mini moms snapping pictures and videos. In Milo’s last few hours, they took out his breathing tube – his lungs collapsed – but he was still alive and doing fine thanks to the ECMO machine. I think I’ll forever have a love/hate relationship with that thing. I remember seeing Milo’s full face for the first time when they took that tube out and all the tape off. I’d never seen something more beautiful in my entire life.

Our last day with Milo was perfect. He was a happy, squirmy boy – and for the first time, we felt a little bit like regular parents… just holding their son.

When we finally had to turn off the ECMO machine that was keeping our son alive, my husband had to make the call. I just couldn’t do it. How do you tell the team that the machine giving your boy life can’t keep going? That you’re ready to let him leave? We held him as life slowly left his little body. Our Mighty Milo was finally done fighting.

You know, it’s funny – ever since having my son I feel like my memory has just tanked. I can’t remember anything these days. But if I close my eyes, I can still see so many details about those last precious moments in perfect clarity. My son in my arms. My husband sitting beside us with his arm around me. Soft music playing. And our army of nurses and doctors surrounding us, protecting us, caring for us. They poured out their whole hearts to us. They loved us. And they loved our mighty boy. I remember praying for angels to comfort us and to lift Milo. Sitting in those final moments, I could see those angels I prayed for all around me. They were in scrubs and worn shoes from too many hours walking up and down halls, taking care of complete strangers in their hours of need. They were Milo’s team who had become our family, Milo’s family.

I’ll never forget that day. I’ll never forget that little hospital room that had been our son’s whole world. It was so sacred. It’s still one of my favorite places.

We buried our Milo a few days later. Hundreds of people showed up to his memorial to celebrate his life. His nurses and doctors came along with our sweet IVF doctor.

I thought I’d seen the purest, truest love in so many remarkable moments before… but looking out at all those faces I love who had come to mourn my son and celebrate his life was truly humbling. And I can honestly say that I have never felt so loved.

My husband and I are still dealing with the grief on a daily basis… it’s been almost four months since that last perfect day with him. Four months since I held my son for the first and the last time. Four months doesn’t seem long, but I feel like I’ve lived a lifetime.

We go visit his grave often. He’s buried in an infant cemetery with other littles just like him. It’s a heartbreakingly beautiful place. It’s a place I wish I never had to love. My husband and I have found ourselves in a very special club that we never wanted to join – a club of childless parents. We prayed and tried so long and so hard for our boy, and he isn’t here. His crib and carseat are empty… his nursery is silent… and all we want to do is talk about him because he’s so real for us. Like any new parents, we’re obsessed with our perfect little boy. But because he’s gone, it’s uncomfortable for other people to want to talk about him. It sometimes feels like it was all a dream. In fact, some days I just go to the cemetery so I can see his name on something – so I can see proof that he actually existed. It’s a lot like infertility – it can be isolating. It can be hard for people to understand. And it can be even harder for them to talk about. But both Milo and our fertility struggles are just a part of us, and they’re parts we wouldn’t change because they’ve connected us to so many wonderful people. They’ve shown us up close what kindness, sacrifice, unity, and pure love look like.

We haven’t jumped back in to fertility treatments again just yet. We still feel like we need a little bit of time.

It will always feel too soon because we aren’t trying to replace our Milo. But it will also always feel like too long because we just want to have our babies home with us.

It’s a really hard place to be.

But it’s a place that so many others know all too well.

If you’re in one of these hard places – loss, infertility, and anywhere in between – know that you aren’t alone.

You are seen.

You aren’t forgotten.

Your story matters.

Your babies matter.

And your efforts to get them here matter.

You are closer to those little ones than you think. They may feel far away right now, but they see how much you love them. They know how hard you’re working to get them here. And they love you for it.

So don’t you give up.

Because you have become so strong in your weakest moments. You are a fighter. You are mighty, just like my Milo.

I honestly could talk about my beautiful boy all day, so I feel like I kept this as brief as I could even though it’s practically a novel. If you want to see more about him and our story, feel free to check out my Facebook page or Instagram account. And even if we don’t ever get to talk or meet, thank you for being with us through the hardest, most beautiful things we’ve ever experienced. It’s nice knowing we aren’t alone.

Big hugs,
The Mighty Myers (Shelly, Jason and Milo)