Thank you for inviting us to share our NICU experience through Bee Mighty. We will forever have a special place in our hearts for preemies and their families, and we hope that our story can help someone who is going through or has been through a similar experience.
- Let’s start from the beginning, can you tell us how you learned you were pregnant and finding out you were having twins?
My husband, Tod, and I had been trying to get pregnant for almost two years. We had experienced a miscarriage and started going to REACH when we found out we were pregnant again in March 2016. We were excited but told to be “cautiously optimistic” as it was so early in the process.
We went in at week 7 for our first ultrasound. We were nervous and hoping for the best. Our doctor looked at the screen and pointed out the gestational sac. Then she looked again and said, “and there’s the second one”. It took a few seconds for it to sink in. We were in complete shock. She continued to look at the screen, and Tod told her to stop before she found a third. It felt like I was in an episode of “The Twilight Zone”. Twins had never crossed my mind.
She did notice that Baby B’s sac was a little smaller, so she referred us to Maternal Fetal Medicine for an ultrasound at week 12. We kept our pregnancy to ourselves in the meantime and tried to balance the emotions we were feeling.
- When did you find out that things with your pregnancy were not going perfectly? Did you know you would have to spend time in the NICU?
At week 12, we went to MFM for a more in-depth ultrasound. At this visit, the babies were measured, and it was determined that Baby B was not measuring in accordance with the gestational age while Baby A was measuring on target. At that point, it was too early to do anything, so we just waited. I think Tod and I thought that in time Baby B would catch up and everything would be okay.
On July 13 we went back for our 18 ultrasound to find out the sexes. We had both been trying to guess. Tod thought two boys, I thought two girls, so we were both surprised and ecstatic to be getting one of each.
A few moments later the doctor came back in, and we knew something was wrong. He made it clear that Baby B was significantly smaller and did not appear as healthy as Baby A. It was the first time I had ever heard the term Intrauterine Growth Restriction. He was very supportive and told us that with a pregnancy like ours, it was impossible to know the outcome, and he had to lay all the options on the table. We could possibly lose one or both babies, or we could terminate Baby B to try to ensure a viable Baby A. I just started crying. We left the office that day with a flood of mixed emotions.
Then 4 days later, things took an even crazier turn, and I ended up in the ER with extremely high blood pressure. Side note…be sure to eat lunch before a trip to the ER so you don’t get sick, throw up, and freak your doctors out even more. I was admitted, put on meds, and sent home after a day of observation. We didn’t realize at that point that it was the beginning of preeclampsia. I would go on to be admitted two more times and spend seven weeks on the Special Care Maternity unit at Presbyterian Main. I was so worried about leaving our home, chickens, and our sweet dog, Flossie, behind for Tod to take care of alone.
During the time in the hospital, Baby B (Ada) continued to struggle. We were visited several times by NICU doctors who wanted to get us to 27 weeks to give the babies a better chance of survival. We were faced with tough decisions that we debated constantly. We also visited the NICU for a tour and saw the tiniest baby I had ever seen. We were told that Baby B would be about that size, and that really brought things into perspective.
- Share what you are comfortable with about the delivery of the babies.
At 26 weeks, it was determined that Baby B had reversed diastolic flow and needed to be delivered soon. One of the NICU doctors explained that to deliver before 27 weeks meant we would be potentially harming a healthy Baby A to save Baby B who may or may not survive. We made the heartbreaking decision to stop monitoring Baby B until the 27 week mark. We decided that if she was meant to be with us she would still be there in a week. It was so incredibly difficult to hear Baby A (James) on the monitor and not know what was happening with his sister. One week later we were hooked up the monitor, and we waited anxiously for the nurse to locate the babies. In a few moments we heard the two heart beats we had been waiting for. Ada was still there fighting. It was then that delivery was scheduled.
On the morning of September 14, we were taken to labor and delivery. Our doctor came to visit and said she had just delivered another set of twins about the size of ours, and that gave me confidence that at least we weren’t alone in this strange experience.
At 10 am the c-section began. The plan was to pull Baby B out first to give her immediate help, but she was hiding so far back that Baby A had to be delivered first instead. At 10:17, James was born, and we heard him cry. It was the most beautiful sound, and I cried too. He was whisked away to a side room to be stabilized by a team of NICU doctors and nurses. He weighed 1 pound 15.9 ounces, but he was breathing enough that he did not have to be intubated at that point.
At 10:18, Ada was born. I thought I heard her make a peep sound, but Tod insists it was my imagination. I think I just wanted to hear her so badly. She weighed just 15.9 ounces. She too was whisked away quickly. Tod went into the room with the babies, and the NICU doctor explained that, despite fears that Ada would be too small for the breathing tube, they had been able to insert it. Our first goals were achieved- both babies were alive, stabilized, and breathing (even if with support).
- When did you get to hold the babies for the first time?
We were fortunate. James was stable from the time he was admitted, and Ada had a brief “honeymoon” period those first days. We held James skin-to-skin for the first time when he was 4 days old, and we held him regularly after that. It was comforting to be able to interact with and hold him since we were unable to do those things with Ada.
I held Ada for the first time when she was 10 days old. I had been so nervous to even touch her before that, so it was magical to hold her. I held her again 7 days later when I held them both together briefly. That’s a moment I will always cherish. Ada became very sick after that, and we could not hold her again until her one month birthday.
- What were the first days in the NICU like? Did it seem to get easier as the days went on?
We had no idea what we were getting into. The first two days were relatively smooth and encouraging. The gravity of the situation hit us hard at 7 am on day 3 when we received a phone call to let us know that Ada’s heart had stopped but she was okay. Being the independent baby she is, she had extubated herself, and after trying her on CPAP, her heart stopped, and they had to do compressions to get it started again. She was re-intubated. We were in shock and realized how precarious this journey would be.
The NICU was a completely unfamiliar experience, but the doctors, nurses, and respiratory therapists were so supportive that it quickly felt like our home away from home. We got used to all the beeps and learned to recognize the scarier ones from the more normal. Tod was working from home at that point, so were both able to be at the hospital every day. We connected with other families and NICU staff and became part of a community we didn’t know existed until were thrown into it but one for which we will be forever grateful.
- Tell us about the nurse and doctors that you worked with.
We were blessed with amazing doctors and nurses through the entire process. We are incredibly appreciative of our doctors for helping us weigh all our options before and after birth and for supporting the decisions we made. The NICU staff are truly special people. Our Nurse Practitioner was always there to explain things to us (sometimes multiple times), and we knew she genuinely cared about our babies. Our primary nurses were so loving with James and Ada and helped get us through good days and bad. We always felt so at-ease when we would call the NICU and one of our primaries had the babies for that shift. We are so fortunate to have been surrounded by such an amazing medical team.
- What was the biggest challenge that you had to face while in the NICU?
The biggest challenge was when Ada got sick. She went from 30% oxygen to 100% in a matter of days. She began retaining fluid making it more difficult on her lungs. She had an infection which led to multiple rounds of antibiotics and 8 blood transfusions. She was moved onto an oscillator when she reached 100% oxygen, and we were told there was nothing more they could do. It was up to her to continue to fight and up to us to have faith in our tiny (but tough as nails) baby. She received steroids, which come with their own set of risks, to decrease inflammation and strengthen her lungs. Her kidneys were not functioning properly which caused her to turn a very dark brown color, and a small clot in her brain developed into a small brain bleed. We felt helpless and overwhelmed, but we were so proud of her everyday as we watched her fight. It’s amazing how strong-willed these little preemies are.
Even though James was relatively “easy” we did have a scare when it was thought he had possible PVL. We were upset with worry and guilt thinking that by forcing him into the world at 27 weeks we had possibly caused him life-long problems. We were so relieved when his follow up scan showed that everything was normal. We will be forever grateful to James for going through what he went through to save Ada. He is a little hero.
- Since you had twins I know they came home at different times, what was it like to leave Ada in the NICU and take James home?
We brought James home the day before Thanksgiving after 70 days in the NICU. Ada was healthier at that point so we weren’t “scared” to leave her, but we knew things would be different. Tod and I took turns making the trip to Charlotte to see Ada while the other took care of James at home. James was, and still is, a great sleeper and a fast eater, so we were able to rest between night feedings. It was a great adjustment period to take care of one baby first. It was wonderful to have James home at Thanksgiving and Christmas even though we missed Ada terribly. On those days, we had family down to help so we got some time with Ada together.
- What were the first days like having everyone home under the same roof, how did your dog react?
After 110 days, Ada came home. It was exciting to be finally taking Ada home, but it was bittersweet because we knew we would not be returning to this environment or to the people who had been so crucial in getting us through this experience.
Ada came home with an apnea monitor and oxygen tanks, so we had to get used to working around her equipment. She also had lots of doctor appointments, so we stayed busy juggling our schedules. We worked our night feedings so we took turns allowing the other parent to rest. Ada was still learning to eat (and still is), so it could take her 30-40 minutes to take a few ounces. One fabulous thing was that the babies came home with a set routine which we kept religiously. It made life easier and kept them on the same schedule. Schedules and routines are very important even now.
Our dog, Flossie, has never really had any interest in the babies. Even now she doesn’t get near them unless they have food or a toy. They are increasingly interested in her though, so it is our hope that she will soon see them as playmates rather than two attention stealers.
- Did you have a lot of fears or anxieties regarding germs once you brought the twins home?
I have lots of fear of germs and illness. James and Ada have been healthy, but we have also kept them pretty isolated. For a long time, they only saw immediate family, and we never took them out. If they had an appointment we insisted on going into a patient room rather than the waiting area, and I always kept them covered. Now that they are older, I do take them out periodically, but I am still super cautious. I sanitize everything they might touch and am careful about people getting close. With flu season, I am even more paranoid.
When Ada first came home, her veins were too small to have blood drawn at the pediatrician’s office, so we had to go to the hospital twice a month to have it drawn by a PICU nurse. I was always terrified to have her in the hospital, and it presented a challenge because people were always trying to sneak a peek at her even though she was covered. It’s amazing how bold people get when there’s a baby to be seen. I had to be assertive with people. I’m sure some thought I was rude, but they didn’t know our situation or how far we had come.
- What does a typical day with James and Ada look like now?
I am fortunate to be able to stay home with James and Ada right now. Our typical day consists of eating, napping (them, not me…haha), playing, reading, listening to lots of music, going for walks with Flossie, and working on developmental skills. Ada receives PT and OT twice a month and has feeding issues we work on daily. The babies are 16 months old now. They love mocking us, making noises, playing with each other, and being silly. James is walking and climbing and into everything, and Ada is crawling and cruising along furniture. We are convinced she could walk but just needs a little more confidence. She is also into everything. Their personalities are, and have always been, completely different. James is outgoing and silly, and Ada is serious, skeptical, and very persistent. They amaze us every day.
- Any advice you would give another family going through the NICU? Anything that really helped you get through the experience?
The NICU experience is a roller coaster ride, and making connections with staff and other families can really help. People in your everyday life try to relate, but it is difficult for them to understand the experience because they aren’t living every detail every day like you are. Those in the NICU “get it” and can offer a different kind of support. We are so appreciative of family, friends, nurses, doctors, and even people we didn’t know who thought about and prayed for James and Ada. It was uplifting to see people invested in our story and rallying behind us.
One thing that helped me on a personal level was to keep a NICU journal to keep track of treatments, milestones, and things doctors and nurses explained that we wanted to refer back to. At the time, it gave me a way to feel useful during those many bedside hours when all I could do was watch and wait. I also wanted James and Ada to have a record of those days to read when they are older so they will know how far they have come. They, like every NICU baby, are fighters, and we are so thankful for them and the experiences they have given us.