April 2020 Mighty Bee
Updated: May 27, 2020
Annie and Avery’s Story
Thank you for sharing Annie and Avery’s story with us!
I know their journey has not been an easy one so let us start from the beginning, how did you find out you were pregnant? I met my husband on a blind date on Easter weekend of 2015. One thing that bonded us early on was the strong desire to start a family. With both of us in our mid-thirties, we were ready to start a new chapter in our lives. Bruce and I dated for a year, became engaged in early 2016 and married that July. To our delight and shock, we found out I was pregnant soon after our honeymoon. Nine weeks into the pregnancy we went into our first ultrasound anxious to hear the heartbeat for the first time. We saw our precious little one on the screen, heard the beating sound of a heart and saw the beginnings of little arms and legs. A few seconds later the doctor paused, then said, “Guys, there is another one in here.” Bruce’s mouth dropped, and tears started flowing from my eyes as we heard a second heartbeat. After close examination the doctor determined I was carrying mono-di identical twins and followed with a lesson on all of the different types of twins and the risks that come with ours.
When did you find out that things in the pregnancy were not going perfectly? Did you know you would have to spend time in the NICU? When we made it to our 19-week ultrasound, we were on the edge of our seats waiting to hear the sex of the babies. Soon after receiving the news about our two little girls, we were told to wait on the doctor to come talk with us. In the middle of our excitement a doctor walked in, sat down and started to explain something else the ultrasound revealed. “Baby B is small,” she said. Then she proceeded to list terrifying reasons why this could be. We were given options we never wanted to hear. I was in a daze until we returned to repeat the ultrasound with the specialist to learn more about Baby B. They found that her umbilical cord was a two-vessel cord instead of three and that she had a condition called intermittent reverse flow. Our prognosis was not good. We were told that most babies with that condition do not make it more than a week, and if they pass in the womb, their identical sibling is put in great danger of a stroke. Each week we came to the appointment with the same fear as before, but amazingly enough Baby B kept shocking everyone. She kept growing despite her condition.
At 24-weeks I was scheduled to be admitted into the hospital for steroid treatments and daily monitoring. The day before I was admitted we were scheduled for an fetal echocardiogram at Levine’s. They wanted to check to see if there was any correlation between Baby B’s umbilical cord condition and her heart, which is sometimes the case. I underwent two hours of anxiety-inducing doppler sounds and waited on pins and needles for the results. The cardiologist sat down and gave us good news about Baby B. Her heart is perfectly normal. Our sigh of relief was interrupted by her next words. “We did find something irregular on Baby A,” she said. We learned she had developed a pulmonary stenosis, a treatable condition once a baby is around 4 pounds. Being more than 4 pounds at birth usually is not an issue, but our girls were measuring less than one pound at that point, and the doctors told us they would have to deliver as soon as Baby B stopped growing. As far as we knew this could be any day.
Share what you are comfortable with about the NICU experience for your little ones. We thankfully made it to 27 Weeks and 6 days before the doctors saw it best to deliver. Avery Louise Moser (Baby A) and Leander “Annie” Huntley Moser (Baby B) were born at 8:32 and 8:33 a.m. on February 2, 2017 weighing 1 pound 11 ounces and 1 pound 4 ounces respectively. They were quickly intubated and rushed to the Levine NICU with the doctors and my husband while I was wheeled into recovery. The next few days and weeks were a blur. We endured lung perforations, a half-dozen intestinal surgeries where both girls lost some intestines and Avery lost her colon due to a hard battle with a NEC (a serious intestinal infection common to preemies), and multiple eye surgeries. We bounced back and forth on a variety of breathing supports and had countless blood transfusions. Sometimes we were prepared for the procedures. Sometimes we were woken up in the middle of the night for them. We watched in panic as their oxygen levels and heart rates would suddenly drop and began hearing the dings of the NICU monitors in our sleep. After about a month of holding their heads and hands through little holes in their isolettes, I was finally able to hold my daughters for the first time. This experience was both precious and terrifying. As I held their fragile bodies against my skin, I felt their tiny hands holding onto my fingers and thanked God for the opportunity to be the mom to such little fighters.
Each day we counted gram by gram as the girls gained weight and celebrated when they reached 2 pounds. Each ounce was a milestone. At 2 and a half pounds the doctors became increasingly concerned with Avery’s heart. The stress of the stenosis and the effects of the life-saving medicine she was on were taking their tolls. They feared her heart would not last until the targeted 4 pounds for her procedure. We were called in one day to discuss a plan. One of the doctors decided it was time to act. The risks were great for performing a balloon catheterization on a baby weighing less than 1500 grams, but doing nothing would put Avery’s life in danger. After one of the longest nail-biting days in our lives, we were relieved to find out that the procedure was successful. She then had a follow-up procedure again at 4 pounds to help the hole open even more.
We had a few more hurdles before the girls were well-enough to come home. When that time came near, the girls had their newborn hearing screening that most babies receive at birth. Annie passed. When it came to Avery’s turn, the audiologist turned to me afterwards with the news that she failed. They gave us the normal response that it could be fluid, but we needed to follow up in a few weeks after we got home.
Did both of the girls get to come home from the NICU together or did you have to go back and forth with one at home and one at the hospital? After five months in the NICU and at 6 pounds each, Avery and Annie both had the follow-up surgeries needed before they were able to go home. On June 28, 2017, Annie and Avery Moser both came home from the NICU together after 146 days, 15 surgeries and lots of love from the doctors and nurses.
What was the biggest challenge that you had to face since bringing the girls home? Since coming home from the NICU we have had a lot challenges relating to eating. Both girls came home with g-tubes, due to the fact they never were able to take more than a few milliliters of milk at a time from a bottle in the NICU after weaning from being on a slow continuous feed from their intestinal issues. Also, after Avery’s follow-up hearing screening we learned that she had little to no hearing and started our hearing loss journey that resulted in her receiving cochlear implants the following summer at UNC Children’s Hospital.
When did you know that you would be needing extra therapies? Do both of the girls need the same therapies? We knew the girls would need feeding therapy and physical therapy from being in NICU beds for the first 5 months of their lives. They were also extremely small for even their adjusted age, so they would need to build strength to reach milestones. Both girls also received two rounds of cranial band helmets to correct severe asymmetrical flattening of the head. Because of Avery’s deafness, she would also need speech and hearing therapies. Avery’s type of deafness also affects balance, so she has also received occupational therapy to help her adjust.
What therapies have really helped? All of them were necessary to help the girls get to the point they are today. Feeding therapy really helped to get the girls eating solid foods. They never learned to drink milk and still rely on their g-tubes for a lot of their needed calories, but we have hopes they will graduate from them in the next year. Physical therapy was also extremely essential for the girls for the first year. We were behind on all physical milestones, but are now caught up at age three.
I know you volunteer with Bee Mighty, how did you hear about it and what made you want to get involved? I learned about Bee Mighty from another NICU mom friend who had volunteered. I also learned more at the table at the Levine NICU reunion. I knew I wanted a way to help and support other NICU families after going through our experience. I loved that Bee Mighty focuses on NICU graduates with a strong understanding that the challenges don’t end when you leave the hospital.
What does a typical day at your house look like now? A typical day at our house includes a lot of reading, potty training, hide and seek, playing dress-up, crafts and singing along to Frozen 2. Avery has speech therapy twice a week, along with ASL class. Our family is learning ASL to give Avery all options in communication. I look at my daughters sometimes and ask myself how are these the same girls who went through such a tough beginning. We are beyond fortunate to be where we are, and we owe so much to the doctors, nurses, RTs, and therapists who have helped us so far.
Any advice you would give another family going through the process? Anything that really helped you get through the experience? We really had to learn to take things one day at a time. As hard as that may sound, it is the only way we kept going while on our NICU rollercoaster. It is also important to give yourself as parents time to take care of yourselves. It is so easy during the NICU experience to forget about making sure you are meeting your daily needs. After you get home, make use of organizations like Bee Mighty and Early Learning Interventionists in your county. Services are out there. Don’t be afraid to ask for them. Be an advocate for your children’s needs.