Mom details NICU life with twins, tragic loss of 15-day-old daughter – Love What Matters

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: Some may find this story disturbing. 

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. It was very confusing. I had no idea where I was or what time it was; I didn’t even know if my babies were alive.

J informed me that she was now a mom, and they had two daughters. It blew my mind that just a few hours ago I was pregnant and now I wasn’t. My baby girls, who weighed 1 pound 7 ounces and 1 ounce respectively, were born to me later.

I was in severe pain the night before, and it was difficult to speak because of the fact that the breathing tube I received during the surgery really hurt me. However, I did manage to get some sleep. J visited the babies in NICU, FaceTimed me, and showed me my daughters.

The NICU, a level 3 NICU, was only one floor above the labor and delivery floor. The postpartum nurses brought in a breast-pump and showed me how I could attach it to my own breast pump so that I could start pumping breastmilk. I was able make a few millimeters per hour and J took it upstairs to pass to the nurses.

After calling to confirm that they were stable enough to allow us to visit them, we made our way up to the NICU. My husband assisted me with a wheelchair. After three minutes, we were allowed to go into their rooms. They were able to share one room with a curtain.

The first thought I had upon seeing ‘A’ (Baby B, the bigger and stronger of the two) was how tiny she was. My child was hooked up with all sorts of tubes and plugs. It was scary to look at her 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.

I couldn’t hold back my tears. It was everything I had hoped it would 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. Nothing could have prepared for what I saw.

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. Our hands could only be used to press their skin, mimicking the sensation of being in-utero for 96 days.

NICU Life

J and I spent the remainder of the week in the hospital together. I was finally able to get up and walk around, use the toilet independently, and take my first post-birth shower. I felt a lot of pain, which I expected, and an overwhelming amount of mental pain.

We visited our girls several times per day. Every two hours, I pump a small amount (eventually breastmilk) into the girls’ feeding tubes. We texted and called our friends and family to let them know the good 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 didn’t know what the future would bring for our family of four.

Later that week, I was released from the hospital and felt bittersweet about returning 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 were blurred with pumping, continual bleeding from my major abdominal surgery and lots and plenty of tears. J and me were able visit our girls in NICU at most once a days for the first few week. We would continue to bring my breastmilk, and the nurses would provide medical updates every time that we saw them.

J and me returned to full-time work the week after that. It felt like a healthy distraction to be in a position to focus our attention on someone else 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.

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.

It is a crucial decision

The doctor, nurse practitioner and nurse asked us to proceed to the multipurpose room just down the hall when we arrived at the NICU. 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 had a private conversation and decided to stop her medical intervention and put her on morphine. This would allow her to feel comfortable and not be in pain. She was going through so much that there was no turning back. She had been fighting to stay alive, but at this point she couldn’t fight anymore.

They switched off all the machines that kept her alive and took her out of the isolette. A had not been stable enough for her to be held out of her isolette before this moment.

As we held her, we talked to and thanked her for her life. We then said our final goodbyes. After several hours, the doctor arrived at our home to check if our daughter had a beating heart. She couldn’t find one. The time of her death was at 11:10 AM on August 23rd. Our perfect angel lived just 15 days.

We chose to have A cremated, and her ashes placed in a tree or another plant that can support new life. We want her memory will live on. It felt as if we were living in a fantasy that 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 precious, beautiful little girl never saw the sunshine. She never breathed by herself or saw the outside. She couldn’t even see her identical twin sister. She was averse to machines, pain and beeps.

It was a good thing she was at peace towards the end and was always surrounded with 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.

Living with Grief

Even weeks later, I still remember the trauma of my emergency C-section and how my daughters were born. It hurts that I can’t forget every detail of those days. This new trauma completely outweighs all previous trauma.

It feels like life just didn’t exist before this. Who would have thought that, before I had even been healed from my C section incision, my husband was going to a funeral home to discuss options for cremation for our baby girl, who is now two weeks old.

I did everything right. It was a perfect pregnancy, full of health and positive choices. 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. There is nothing fair or just about this.

‘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 saw her fur-siblings or the family members who loved her so deeply.

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. After only 15 days of life, our baby died in our arms. She was probably in pain throughout the whole time she was being poked, prodded, and experimented upon.

Our other baby is currently undergoing medical procedures and may not be able to make it. It isn’t okay, and I can’t stop feeling so bad for myself and the life J and I have with each other.

V is now two-months-old at the time this article was written. V is still in the NICU, and she continues to undergo intense medical procedures. She continues to fight for her existence and is now gaining weight.

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 are okay while others feel great, while other days can be very, very 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.

I most definitely don’t feel like a mother at this point. One of my daughters passed away, and my other is in an isolette as doctors and nurses attempt to determine the best settings for her oxygenation and feeding.

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. Do I think I will ever get the chance to do this? We feel as though we are in limbo and yet the world goes on around us.

I wish I had profound advice to close this story. I hope that all will be well and that I can now feel at peace. This is not my experience.

My only words of wisdom are: Life is precious and fragile. Grief is not a time-line. It is not what I had hoped for when I married and became a mother. And love does make even the most impossible days a bit more bearable.”

This article was submitted to Love What Counts by Mollie Midlothian, VA. Follow her journey here Instagram. Subscribe to Love What Matters and join the Love What Matters Family Newsletter.

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