“Life in the NICU is something that’s hard to explain until you’ve experienced it. I left the NICU a different person than before my girls were born.”
Natalie Mikles was pregnant with twin girls when, at 20 weeks, her doctor discovered a placental chorioangioma – a benign mass on the placenta. Once a week visits became twice a week visits and then daily visits until the mass had grown to a size her obstetrician no longer felt was safe for the girls. The growth was restricting blood flow to Baby A, later named Annabeth.
At 27 weeks, the OB sent Natalie to a specialist at OU Children’s Hospital in Oklahoma City. The next day, he performed an intrauterine surgery to give a blood transfusion to Annabeth.
“We thought we would soon be returning to Tulsa and that I would be on bedrest for the duration of my pregnancy,” Natalie said. “Instead, by that night, it became clear the transfusion wasn’t enough and that he would need to deliver.”
Here is Natalie’s story.
What were the circumstances around your girls’ early delivery?
The doctor gave me and my husband, Jason, the option for Baby B, later named Mary Kate, to grow and thrive, knowing Baby A (Annabeth) could potentially suffer. Delivering both babies prematurely, he said, put them both at risk. But we didn’t need to give it any thought. We decided to induce and deliver both girls. They were born at 8:59 and 9 a.m. on May 14, 2009.
Realizing I couldn’t control the process was hard for me. A doctor told us that a NICU stay is two steps forward, one step back. That it’s a rollercoaster ride of progress followed by setbacks. Sometimes the setbacks were overwhelming – my girls each had two surgeries before they left the NICU, as well as a number of blood transfusions, scans and countless IV changes and blood draws.
When did you get to go see them for the first time?
I saw my girls several hours after they were born. I was in shock about the whole experience, and don’t remember feeling overly anxious about waiting to see them. My husband stayed primarily with them those first couple of days, so I knew they were in good hands. He would call and text me with updates and pictures from the NICU. The first time I saw them, I thought they were beautiful. Just watching them take little breaths was beautiful to me.
When did you get to hold your girls for the first time?
I held Mary Kate when she was about eight days old. It was a process. I changed into a gown so I could hold her skin-to-skin, and then we moved a chair so it was close enough to her isolette that the wires could reach. Two nurses were there to hand her over, placing her on my chest. Her skin was so delicate, almost transparent. I took her all in, breathed her in and felt so overwhelmed to finally hold this amazing girl.
It was probably a week later before I held Annabeth. She was on an oscillator – a high-frequency ventilator, and all we could do was peek at her during that time. The first time I held her was more stressful than holding her sister. I only held her a minute or two before her sats dropped, and she had to be put back in her isolette.
Eventually, I was able to hold them at the same time, and would tell them about all the wonderful days ahead. I would tell them the names of every person who already loved them. I would explain what our house looked like and what we would do when we got home. I would even tell them about all the food they were going to be able to eat one day.
What was the most difficult part of having a baby born premature?
The most difficult thing for us was not being able to get our girls enough nutrition. We worked endless hours with nurses and speech therapists to work on feeding the girls. Annabeth had extreme oral aversion because of the long time she spent on the ventilator. When it was time to bottle feed, she wanted nothing to do with it. Mary Kate would fall asleep or just show no interest in eating.
Both of our girls left the NICU with g-tubes – feeding tubes surgically placed in their stomachs to deliver formula or breastmilk directly to them. I was adamantly against this, and wanted them to leave the NICU as “normal” babies. But after more than four months in the NICU and with no other remaining issues other than feeding, it was time to have the surgery and bring home our girls.
Mary Kate learned to eat pretty quickly after coming home, and her feeding tube was removed when she was just about 1 year old. Annabeth was another story. Her feeding struggles remained until she was 6 years old. At age 3, we spent a month at an inpatient feeding program in Dallas. She went from eating maybe two percent by mouth to eating 50 percent by mouth. But it would take almost three more years for her to be eating 100 percent by mouth, and we removed her tube when she was 6 years old.
What kinds of things did you do to feel more like a “regular” mom to your preemie?
I bought a diaper bag. I didn’t have any need to carry diapers, bottles or anything else baby-related since the girls were in the hospital. But for four months, I carried that bag to and from the NICU.
Were there good times?
I have many good memories from the NICU – giving the girls their first baths, watching them peacefully sleep, laughing with nurses. One of our night nurses declared her nights with our girls, “Girls Night Out,” and would play country music and sing along to the girls at night.
But just as quickly, a monitor would beep or a test result would come back with bad news, and it felt like the air was leaving the room. I have watched each of my girls be resuscitated after their oxygen dropped dangerously low. Those are images that will never leave me.
What got you through the tough times?
I felt a deep sense of peace from the day my girls were born that they were going to be OK. I knew God was with us and that He loved my girls even more than I did.
On a practical level, we got through it by staying positive, maintaining some humor throughout and planning for the future when our girls would be home with us. We were in a unique situation – living at the Ronald McDonald House in Oklahoma City – and while we didn’t have the comfort of home, we also didn’t have the distraction of home. We spent our days and nights at the hospital – leaving only for lunch and dinner breaks. To keep our sanity, we occasionally went to see a movie or would take a cookie and coffee break and bring back cookies for ourselves and the nurses.
What would you tell a mom who has a preemie baby in NICU right now?
I had no experience with babies, much less premature babies, so I closely watched and followed the lead of the NICU nurses, some of whom became very good friends and remain so to this day. I would tell moms to get to know all the caregivers in the NICU, from the doctors and nurses to the case managers and receptionists. Ask questions. The more informed I was, the better I felt.
I would also suggest keeping a notebook of thoughts and questions. Things happen so quickly in the NICU, that the important question you had yesterday can be forgotten the next day.
Websites like Preemie Mom Camp would have helped me tremendously. I would spend time looking online for information about preemies, but I didn’t want to read medical journals. What I really wanted were real stories about real babies – to know about their experience and outcome.
How are Mary Kate and Annabeth today?
Wonderful! They are 8 years old, and besides surgical scars, you would never know they had any health issues. Knowing how hard they fought to breathe, to eat and to live makes me immeasurably proud of them and of the beautiful, strong girls they are today.
Mary Kate has a partially paralyzed left vocal cord, an injury that occurred after a PDA ligation. She doesn’t have any breathing problems, but will never be able to hit a soprano’s high notes.
Annabeth went through years of struggles with eating and swallowing. Today, she’s an adventurous eater and is less picky than her sister and brother.
Did you go on to have other children?
My son, Bennett, was born full-term and healthy a quick 15 months after my girls were born. He was a wonderful blessing – and surprise!
How was having a preemie different than having a full-term baby?
We were in the trenches of full-time care with our girls, including tube-feeding and speech and occupational therapy when Bennett was born. Having a full-term baby was so much easier than having medically complicated premature babies. Bennett just made our already crazy life a bit crazier.
I always say preemie moms deserve a merit badge. What merit badges do you think you have earned?
I earned the Pumping Badge, for sure. The entire rhythm of my days centered around my pumping schedule. I pumped every two to four hours and would then clean and sterilize all the parts, label the breastmilk and store it. Then it would be time to do it all over again and again and again. But it was something that made me feel useful and proud that I could feed them both.