‘She was fighting to stay alive, but couldn’t fight anymore.’: Mom details NICU life with twins, tragic loss of 15-day-old daughter

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This is the second part to Mollie’s story. Read part one here: ‘Nothing about this was what I expected.’: Mom shares twin pregnancy journey ending in emergency C-section

Disclaimer: This story contains details of child loss which may be upsetting for some. 

Meeting My Girls

“When I woke up, I was in a different hospital room than I had been in previously, and my husband and mom were looking over me. I was really confused. I had no idea where I was or what time it was; I didn’t even know if my babies were alive.

J told me I was now a mom and we had two baby girls. It blew my mind that just a few hours ago I was pregnant and now I wasn’t. I later learned my baby girls were born at 9:20 and 9:21 p.m. on August 8th, weighing 1 pound 7 ounces and 2 pounds 1 ounce.

That night, I was in a lot of pain and it was very difficult for me to talk, as the breathing tube I needed during the surgery really hurt my throat. But I was able to get a few hours of sleep here and there. J visited the babies in the NICU and FaceTimed me while he showed me my daughters.

We were fortunate enough that the NICU (a level 3 NICU) was just one floor up from the labor and delivery floor. The postpartum nurse brought in a breast pump and showed me how to attach it to myself so I could begin pumping breast milk. I was able to produce a few millimeters of colostrum every few hours, which J ran upstairs to hand off to the nurses each time.

After calling up to check they were stable enough for us to come visit, we made our way upstairs to the NICU. My husband pushed me in a wheelchair, where we then had to scrub in for three minutes before we were able to enter their rooms. Thankfully, they shared one room with a curtain in between the two.

The first thought I had upon seeing ‘A’ (Baby B, the bigger and stronger of the two) was how tiny she was. She was hooked up to all kinds of plugs and tubes, and it was terrifying to see my child like that. Baby A, ‘V,’ wasn’t stable enough for us to even peek into her tiny isolette, as there were nurses and specialists working on keeping her alive.

new mom in wheelchair in front of "welcome to the NICU" sign
Courtesy of Mollie

I couldn’t hold back my tears. Nothing about this experience was as I had expected it to be. I always assumed I would deliver my babies naturally, I’d hear them cry right away, and then they’d be placed on my chest for skin-to-skin comfort. I never imagined I wouldn’t even be able to touch my children or that we wouldn’t hear them cry for the first few weeks of their lives. Absolutely nothing could have prepared me for this.

For babies who are born this prematurely, their nerve endings are closer to the skin and their skin is so thin that we’re not able to touch them or rub their skin in the same way we would a full-term baby. We could only press on their skin with our whole hand, trying to mimic what it would feel like to still be in-utero, which is where they should have been for 96 more days.

new mom sitting by her daughters bed in the NICU
Courtesy of Mollie

NICU Life

For the rest of that week, J and I spent our time together in the hospital. I was eventually able to stand up and walk around a little bit, go to the bathroom independently, and finally take my first post-birth shower. I was in a lot of physical pain (which I expected) and an incredible amount of mental pain (which I did not expect).

We visited our girls a few times each day. I pumped a small amount of colostrum (eventually breast milk) every two hours to be inserted into their feeding tubes. We called and texted our family and friends to share with them the news.

It felt like we were in this strange limbo – a part of us was over the moon because we had brought two babies into this world, but another part of us was too scared to be excited. We had no idea what the future would look like as a family of four.

hand holding container of breast milk
Courtesy of Mollie

I was discharged from the hospital later that week, and I felt so bittersweet about going home. I didn’t have a child (or two) to hold and snuggle; I felt like a failure. My body had failed me – and my children.

The next few days felt like a blur consisting of pumping, continuing to bleed from the major abdominal surgery I had endured, and lots and lots of tears. J and I were able to visit our girls in the NICU at least once a day for those first few weeks. We would keep bringing in my expressed breast milk, and the nurses would provide us with medical updates each time we saw them.

cookie cake with "welcome home mommy" written on it
Courtesy of Mollie

The following week, J and I returned to work full-time. In all honesty, it felt like a healthy distraction to be able to turn our attention to somebody other than ourselves and our sick children.

At this point, we started to settle back into another new routine – calling the NICU for updates at least once a day, working our normal hours, and then visiting the girls at some point throughout the day as well. We learned to celebrate the smallest of wins, like when our girls ‘graduated’ into the next size of diaper.

mom with NPremie sized diaper in her palm
Courtesy of Mollie
moms hand holding a premie sized diaper
Courtesy of Mollie

On Tuesday, August 23rd, as J and I woke up to our alarm reminding us it was time for me to pump, we noticed we both had missed calls and voicemails from one of our daughters’ doctors telling us to call her back as soon as we were able.

When we called her back, she told us ‘A’ was critical and we should come in as soon as we could. While we were driving to the hospital, fearing the worst, I remarked that the weather felt very symbolic to our lives at the moment – dreary, foggy, dark… hard to see what’s coming.

A Critical Decision

When we got to the NICU, the doctor, nurse practitioner, and nurse asked us to go to the multipurpose room down the hall. To save you all from the medical details, I’ll say this – A’s blood pressure dropped significantly and they couldn’t get it up with any medications, and then her kidneys eventually stopped functioning altogether. The doctor told us that it was time to make an incredibly difficult decision about ‘A’.

My husband and I talked privately and decided to take her off medical intervention and to put her on morphine so she could be comfortable and not continue to be in pain. What she was going through, there was no coming back from. She had been fighting to stay alive, but at this point she couldn’t fight anymore.

They turned off the machines that were helping keep her alive and removed her from the isolette. Up until this point, A had never been stable enough to be held outside of her isolette, so I was then able to hold my precious baby girl for the first and last time.

As we took turns holding her, we talked to her, apologized to her for the life she had, and said our goodbyes. After a few hours, the doctor came into our room to see if our daughter still had a heartbeat, and she could not find one. The time of death was 11:10 a.m. on August 23rd. Our perfect angel lived only 15 short days.

We decided we wanted to have A cremated and have her ashes planted into a tree or another plant, something where new life can be grown. We want her memory to be able to live on. It felt like we were living in a dream that I knew would never end.

You know when you’re underwater, and you can see the surface but you can’t quite reach it? Every time you think you’re close, you get pulled even further down and you haven’t been able to catch your breath yet. That’s what those first few days after her death felt like. 

Our sweet, perfect little girl never got to see the sunshine. She never breathed on her own or saw the outside world. She was never even able to see her identical twin sister. She knew of nothing but beeps and machines and pain.

I remind myself that at least she was at peace toward the end, and she was always surrounded by so much love. Most days, sleep seemed to be the only thing strong enough to distract us — but even then, my dreams were filled with pregnancy and babies and twin thoughts.

two baby's first year books on table with pen
Courtesy of Mollie

Living With Grief

Weeks later, and I am still reeling from the trauma of being in the hospital, my emergency C-section, and the way my girls were brought into this world. I am constantly remembering every last detail of those few days, and that hurts. But now, this new trauma just completely overshadows anything else that had happened prior.

It feels like life just didn’t exist before this. Who knew that before I was even healed from my C-section incision, my husband and I would be going to a funeral home to discuss cremation options for our two-week-old baby girl?

I did everything right; I had the most perfect pregnancy filled with health and good choices on my end. I wanted this more than anything in the entire world, for years and years, and I just don’t understand what I could have possibly done to deserve this. Nothing about this is fair or just or right.

‘A’ died in limbo – she wasn’t a miscarriage or stillbirth, but she also wasn’t a newborn in the sense that we brought her home or that her heart ever beat on its own. She never met her fur-siblings at home or any of her family members who all loved her so much.

diaper cake with safari animals for twins
Courtesy of Mollie

I’m tired of answering everyone’s questions about V’s health, about the passing of A, and about how we’re coping. ‘How are you doing?’ is an absurd question to ask J or me, and yet we’ve been asked that exact question more times than I can count.

We’re not ‘doing.’ There is no ‘doing.’ Our daughter died. Our baby died in our arms after living for only 15 short days, quite possibly in pain the entire time, being poked and prodded and experimented on.

Our other baby is going through all kinds of medical interventions and may not make it, almost definitely not without long-term side effects from all of this. It isn’t okay, and I can’t stop feeling so bad for myself and the life J and I have with each other.

At the time of writing this, V is now two months old. She is in the NICU and continues to go through intense medical procedures. She is gaining weight and continuing to fight for her life every day.

I still don’t know how to answer the question, ‘How are you?’ because honestly, I don’t even know how I am. Some days feel okay, some days even feel good, and most days feel really, really bad. I think I have gone numb to a lot of what’s happening.

Life still feels like a blur, like I’m watching someone else experience this devastation. I don’t feel like myself. I don’t know if I ever will and I don’t even know what ‘myself’ is anymore.

twin mom wearing ring with babies' initials
Courtesy of Mollie

I most definitely don’t feel like a mother at this point. One of my daughters died, and my other daughter is still in an isolette while doctors and nurses try to figure out the best settings for her oxygen and feeding levels.

She’s not home with us to snuggle, I’m not able to breastfeed her directly (she’s still on a feeding tube), and I haven’t been able to dress her in cute onesies – things most new parents take for granted. Will I ever even get to do these things? It continues to feel like we are living in limbo, and yet the world somehow goes on around us.

I wish I had some profound advice to wrap up this story. I want to say everything will one day work out and I am now at peace. However, that is not, and has not been, my experience.

What I will say is this: Life is fragile and so very precious. Grief has no timeline. Marriage and motherhood are not at all what I expected. And love does make even the most impossible days a bit more bearable.”

mom wearing "twin mom" crewneck taking a selfie
Courtesy of Mollie

This article was submitted to Love What Matters by Mollie of Midlothian, VA. You can follow her journey on Instagram. Join the Love What Matters family and subscribe to our newsletter.

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