‘Look at those eyes; she is a fighter.’ She was one of the smallest, sickest babies they’d ever seen.’: Mom of twinless micropreemie offers advice for navigating ‘NICU rollercoaster’

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This is a follow-up to Part 1 of Caryn’s story, which you can find here.

“The term used for a baby born between 22-27 weeks is called a ‘micro-preemie.’ Any baby born 28-37 weeks is called a preemie. On July 18th, 2011, Olive Avery was born over 16 weeks early for her November 11th due date. In the Jewish religion, the number 18 is special as it signifies life. It was no coincidence she was born on that day, and I took this as a sign all would be okay. But, it was not easy by any means.

My husband stayed over with me that first night after her birth. I remember feeling so comfortable waking up in my hospital bed on the post-partum floor. Thank goodness I don’t remember hearing or seeing many babies. I’m not sure my fragile heart could have handled it, coupled with my scattered hormones and lack of sleep. There wasn’t much interaction with my direct MFM once I had given birth.

During his quick check-in with me, he told me he presented my case that week to the medical students due to its rare nature. To this day, I am sure this man pats himself on the back and takes full responsibility for my taking Olive home. I don’t look at it that way at all. In my eyes, had this man listened to me, I might have been able to take home two babies instead of just one. I hope time has sobered him to the reality that he must listen more attentively to the women he treats and their concerns.

My husband and I went through a lot of emotions after her birth. He asked me if I wanted to see her, and my first response was no. He showed me her picture and insisted she needed me. I can’t explain why my first thought was no, but I guess I was scared. I had just been through my second traumatic delivery, and I was panicked I would lose her too.

If you have ever been in a NICU, you know it never sleeps. Having a mom roll up in a hospital bed to her baby’s isolette is a common sight there, even at 3 a.m. From the second I laid eyes on her, I knew this baby would be coming home with me. She was so tiny, a mere 3/4 of a pound (less than a can of Coke). I had never seen a baby that small whose eyes were still fused closed, but I just knew. Being that it was a tough time for me, I continued my therapy as often as possible. I remember sending her picture to my therapist when her eyes had finally opened. She took one look at her and said, ‘Look at those eyes; she is a fighter.’ And fight she did for 135 days.

A baby girl wearing a pink hat lies in the NICU
Courtesy of Caryn Rich

Having a baby in the NICU is like a box of chocolates; you never know what you’re going to get (thanks, Forest Gump). It’s often referred to as the NICU rollercoaster. No two days are alike, and just because things may look good one day, the next could be the total opposite. I think my perinatal stay prepared me for what I was about to go through. Still, it was a whole new learning experience, complete with its own set of abbreviations. Sats, Nec, Brady, Cpap, ET, HFV, Broviac, and PICC, to name a few, are words I became intimately familiar with during our stay.

When Olive got there, she was one of the smallest and sickest babies they had ever seen. Typically, nurses work 12-hour shifts, but I remember some shifts were much longer in the beginning. I had no idea what a primary nurse was or why I needed one. Still, I was grateful several nurses stepped up to give my little girl continuity of care. Olive’s nurses were a huge source of support for us all. It was a new and scary experience, and I was grateful to have some kind of routine during the chaos.

I genuinely believe these nurses were meant to be with us, especially the recently engaged one getting married on the twins’ due date. On more than one occasion, they went against the doctors and advocated for Olive when I couldn’t or didn’t know how to. One time that sticks out is when the NICU doctor wanted to take her off the ventilator because her oxygen saturation was excellent. Our day nurse knew Ollie was just ‘honeymooning’ that week and gave him a very firm NO. (‘Honeymooning’ is the term used to describe the effects of pre-birth steroids on a baby, making it look like their lungs are healthier than they are.)

A pair of NICU nurses hold up a tiny baby girl
Courtesy of Caryn Rich

Those next four months were so tough on the whole family. I had a child who had started Kindergarten, and I had to get him on the bus, drive over an hour to the hospital, and leave in enough time to get him off the bus. Towards the end of her stay, I traveled back and forth to the hospital twice a day. I was also waking up every few hours to pump and save my milk. The end goal is to get them stable to ‘grow and thrive’ to be discharged home.

During Olive’s first week of life, she suffered at the hands of a doctor who wasn’t skilled in getting central lines in tiny babies. It was the same day we had planned for our son to visit his little sister. After returning from the procedure, one of her nurses pulled me aside and told me he might be scared to look at her. The doctor had failed to obtain the line, and she came back with her left leg being black in color because he had cut off the circulation in her groin. Ultimately, we decided it was best not to cancel his visit. He was so excited to see his sister, he ran right up to her, unphased by her appearance.

A little boy holds his baby sister in the hospital
Courtesy of Caryn Rich

That same week, she also suffered a complication common with tiny babies when small amounts of milk are introduced, called NEC. Olive had an infection in her intestine that could have been fatal. I remember looking over at her and seeing nine different medicines pumped into her at various times. She had blown up like a balloon too, which required a breathing tube replacement and was somewhat of an emergency. Replacing the tube was very difficult, and the respiratory department pulled it off flawlessly.

After Olive’s leg turned black, she was sick with NEC, and getting her healthy was the priority, not her leg. We didn’t know until over a year later the extent of the damage the doctor caused to her leg. Eventually, she got better, but unfortunately, her toes stayed black, and about a month later, they all fell off. I remember being numb the whole time. It was like I had an out-of-body experience; I couldn’t believe this was happening. I had to keep remembering that keeping her alive was the priority. In the Jewish religion, we are to bury body parts back in the ground where they came from. We eventually buried Olive’s toes with her lost twin, Alef, knowing there was no other place they belonged. It makes me feel a tiny bit better knowing a piece of his twin is with him and he isn’t alone.

While so many in the NICU become like family, not everyone is a good egg. Like the lactation nurse who told me not to pay her for the hospital grade pump, who said, and I quote, ‘Let’s see if she makes it first.’ I don’t think I ever told her how much that hurt me, but I just let it slide because I didn’t have the energy to fight. Or the young nurse who shamed me for being emotional over all that was going on. I would challenge anyone who was going through what I was not to be. Or the resident who shamed my daughter and made her a spectacle because she lost her toes. Thankfully, these were the exception and not the rule.

All I wanted to know was if she could come home. No one could give me a personal, first-hand story of hope. The odd acquaintance had a micro-preemie who survived, but there were not many actual people I could go to when I had questions. There were very few books and stories on a NICU stay, let alone one like ours. I only wish I had the love and support available today via social media.

If you are looking for tips to get you through your child’s stay, here you go…

Things that helped me:

1) Prozac

Yup, I just put that out there. I was having a tough time. After thoughtful consideration and discussions with my therapist, we felt going on an anti-depressant was needed. My job was not only to take care of my tiny miracle, but I had a child and husband at home who needed me too.

A little boy stands in the NICU visiting his baby sister
Courtesy of Caryn Rich

2) Staying laser-focused on Olive coming home, no matter what the naysayers said

It didn’t matter what the doctors thought, or anyone else for that matter; I knew in my gut she would come home one day. No matter how sick she was, I knew it. One doctor told me daily I needed to prepare for the worst even though she progressed. I told him all I cared about is how she was doing at that particular moment. Each day was challenging, but knowing in my heart she would come home made them a teenie bit easier.

3) Kangaroo care as often as they would let me

The nurse let me hold my baby for the first time because her heart rate was declining. She wanted me to have that experience immediately if she was not to make it. Olive’s health began to improve slowly from that moment on, and I swear it was from her being close to me. I would whisper all the positive thoughts I could in her ear and tell her what a fighter she was. I needed that snuggle time just as much as she did. It made a considerable difference and was a turning point for both of us.

A mom holds her baby girl on her chest
Courtesy of Caryn Rich

4) Family meetings

There are so many cooks in the pot who all have opinions and thoughts. Sometimes with a medically complicated case like ours, having all these minds in one room is the only way you can get a plan and roadmap in place to get your child home. I believe we had two meetings and knowing we were all on the same page was a game-changer.

5) Working closely with Child Life and the social worker.

I had never heard of Child Life before this experience. These incredible humans are your biggest cheerleaders when you have a sick child in the hospital. They provided so much by way of support and creative projects to make our extended stay a little less daunting. The social worker was not only great for emotional support but was knowledgeable in terms of financial resources. Something I truly appreciated when the stay alone could cost upwards of $3000/day. We were there 135 days; do the math—the number is staggering!

6) Pumping milk and storing it.

At times, there is nothing you can do for your tiny infant other than just being there. It is hard not to pick your baby up when you want to and to have to ask permission to even touch them. But pumping was something I could do for my daughter. I could ensure that when the time came for her to eat, it was ready. Pumping gave me a renewed sense of purpose, which I needed.

7) Doing research.

When you have a micro-preemie, suddenly, people come out of the woodwork to tell you they know so-and-so who had one too. Every person who had a connection to a micro-preemie I reached out to, hoping to learn as much I could about the NICU and the experience. I searched high and low for books so I could learn as much as I could. I also found the best micro-preemie clothes so they were right next to her isolette, waiting when she was ready for them.

A dress suited for a micropreemie in the hospital
Courtesy of Caryn Rich

8) Praying

I would say I am more of a spiritual person but was raised to be quite religious. My daily routine included saying a prayer for healing. I would stand next to her isolette and pray to GOD to help her make a full recovery. I would then open the isolette up and touch her and tell her over and over how much I loved her and couldn’t wait until the day I could bring her home.

When you give birth to a child as severely premature as I did, you don’t get way scar-free in any sense. Olive has many physical and mental challenges due to her early arrival, but she is always smiling despite them all. She has had upwards of 40 surgeries, but she beat the odds and came home. She was one of 10 babies born at 23 weeks that year to survive. I am so lucky to be her mom, and she has taught me so much about life and what your priorities should be.

A baby girl lying on a bed in the hospital
Courtesy of Caryn Rich
A mom and her partner with their two young children
Courtesy of Caryn Rich

But our story continued after that…

Olive had just turned 2 when I visited with my RE to talk about concerns I had over recent bloodwork and the frozen embryos we had. I was torn over what to do with them after all we had been through in our last pregnancy.  She sent me on my way and told me to call her when my period came as she wanted to do an HSG based on some symptoms I was having. I remember laughing at her after all we had been through, but she insisted.

At some point, I realized my period never came. Truthfully, I didn’t think anything of it, but my doctor sent me for blood work. She called me immediately to tell me I needed to come in for a fetal ultrasound.

You hear of this happening all the time after long battles with infertility. Still, I always thought it happened to other people. At 42 years old and with one fallopian tube, I got pregnant naturally with my last child.

If you made it through both of my stories, I genuinely hope you found one overarching theme: you should never give up hope. Like you, I had so many disappointments even before I conceived, but they all prepared me in some way for what I needed to go through.

I share these stories so they can fill you with hope and renew your strength so you, too, can have your little miracle. It may not be easy, but I can assure you it’s all worth it!”

A baby girl wearing a pink dress and headband
Courtesy of Caryn Rich
A family of four with their newborn baby girl
Courtesy of Caryn Rich

This story was submitted to Love What Matters by Caryn Rich, a fertility coach from Charlotte, NC. You can follow her journey on InstagramFacebookPinterest, and her website. Submit your own story hereand be sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos.

Read more from Caryn here:

‘Get the baby out! Save my baby!’ I was willing to face my death happily in exchange.’: Mom details traumatic twinless twin birth

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