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. Olive Avery Rich was born on July 18th, 2011, over 16 weeks early for her November 11th due date. In the Jewish religion, the number 18 is important as it signifies life. It was no coincidence that she was born on that day, and I took this as a sign that all would be ok. But, it was not easy by any means.
My husband stayed over with me that first night and 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 that he presented my case that week to the medical students due to its rare nature. To this day, I am sure that this man pats himself on the back and takes full responsibility for me 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 that time has sobered him to the reality that he needs to take more of a vested interest in 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 that 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 that I would lose her too.
If you have ever been in a NICU, you know it never sleeps. Having a mom rolled up in a hospital bed to her babies isolette is a common sight there, even at 3 am. I knew from the second I laid eyes on her that 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 I 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.
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 one-day things may look good, the next could be the total opposite. I think my Perinatal stay prepared me for what I was about to go through, but it was a whole new learning experience complete with its own set of abbreviations. Sats, Nec, Brady, Cpap, ET, HFV, 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. At my 3 am visit, Nurse Nelda was on call, and she took care of Olive until the 7 am shift change. Nurse Linda stepped in next, and Olive gave Linda a run for her money that day. Typically, nurses work 12-hour shifts, but I remember that she stayed until 9 pm that day. That evening I met Jessa, who decided she was going to be Olives Primary Night Nurse. I had no idea what that was or why I needed one, but I was grateful that she would take on such an extreme case. She explained that she understood firsthand what it was like to care for a child in the hospital for an extended stay. She was a huge source of understanding and support for us all. As it turned out, we needed the continuity in care that a primary nurse provided.
I’m not sure if it was the next morning or not, but Nurse Stephanie was next, and I asked her to be Olive’s Primary Day Nurse. Stephanie and I bonded over so much, but mostly I think it was her spunky, no-nonsense attitude that united us. She had recently gotten engaged and guess what her wedding date was to be? If you guessed 11/11/11, Alef and Olive’s due date, you are correct. It felt meant to be! On more than one occasion, Stephanie went up 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 doc (the same one we consulted with the week prior) wanted to take her off the ventilator because her oxygen saturation was excellent. Stephanie knew that Ollie was just “Honeymooning” that week and gave him a very firm NO. The term describes the effects that the pre-birth steroids have on a baby, making it look like their lungs are healthier than they are.
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 where they “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. Nurse Agnes was on that day, and Jackson was going to visit his little sister. She pulled me aside after returning from the procedure and told me he might be scared to look at her. The doctor had failed to obtain the line, and she came back with a black leg because he had cut off the circulation in her groin. Jackson was so excited to see his sister he ran right up to her unphased by her appearance.
She also suffered a complication that week that is common with tiny babies when they start to take small bits of milk 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. It was somewhat of an emergency and was a very difficult extubation/intubation. Sergio was on call that day from the Respiratory department, and he had such a calming effect on me and rocked that switch.
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 what damage that did 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 that whole time. It was like I was having 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 to return them from where they came. We eventually buried Olive’s toes with Alef knowing that there was no other place they belonged. It makes me feel a tiny bit better knowing that a piece of his twin is with him and that he isn’t alone.
During this time, the NICU doctor (again, the same one we spoke to before delivery) walked over to me and wanted to discuss the possibility of ceasing life. I walked away from him and said, ‘she is coming home to me; I don’t know how but she will’! You don’t walk away from NICU doctors, and this one was no exception. He was not very happy with me. But, this very same doctor did walk up to me two months later to tell me that my daughter beat all the odds and that had a lot to do with me. You see, she had less than a 5% chance of coming home and was one of ten micro-preemies born that year that did.
During our time in the NICU, we connected with other parents who’s babies were also there. Even though our children were there for different reasons, we bonded. Her first friends will always be Nolan, Chris, and Eddie. We understand just how fragile our children were and share a sense of pride when each other’s children get to another milestone. You never know where you will meet other moms doing their “time,” like the waiting room, the NICU floor, or the pumping room. These families will always hold a special place in our hearts.
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 with my story not to be. Or the resident who shamed my daughter and made her a spectacle because of the loss of her toes. Thankfully these were the exception and not the rule.
Working in the NICU requires you to be an exceptional person. You need to serve not only a tiny baby but a sometimes a hysterical parent. I am beyond grateful to all the special ladies (and gentlemen) that worked so hard to get my baby home.
Things that helped me:
1) Prozac.
Yup, I just put that out there. I was having a tough time, and 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.
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 that she would come home one day. No matter how sick she was, I knew it. Even being told by one doctor daily that even though she was making progress, I needed to prepare for the worst. I told him all I cared about is how she is doing at this particular moment. Each day was challenging but knowing in my heart that she would come home made them a teenie bit easier.
3) Kangaroo care as often as they would let me.
The first time I got to hold my baby, Nurse Stephanie let me do so because her heart rate was declining. She wanted me to have that experience immediately if she was not to make it. From that moment on, Olive’s health began to improve slowly, and I swear it was from her being close to me. I would whisper in her ear all the positive thoughts I could and tell her what a fighter she was. I needed that snuggle time just as much as she did. It made a considerable difference for both of us.
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 to getting your child home. I believe we had two but knowing that 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 having to ask for permission to touch them is hard. But, pumping, that was something I could do for my daughter. I could ensure that when the time came for her to eat that 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 that 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.
8) Praying
I would say I am more of a spiritual person but raised to be quite religious. My daily routine included saying a prayer for healing, where 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 that I could bring her home.
If you made it through all 3 of my stories, I truly hope you could find one overarching theme that 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.
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. I am so lucky to be her mom, and she has taught me so much about life and what your priorities should be.
I want you to know that I see you and the pain you are in now. I share these stories so that my path can fill you with hope and renew your strength so that you, too, can have your little miracle.
It may not be easy, but I can assure you it’s all worth it!
I am sending you so much love and baby dust!
xo,
Caryn
One of the first times I got to hold her.
Nurse Stephanie and Nurse Jessa – Olive’s primary nurses.
December 1, 2011 – the day we took her home.
Olive’s Halloween costume made with love by Nurse Jessa.
Olive’s first Halloween.
