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June 1, 2017

Learning to see the “What is”

By Michelle Moser

I met my husband on a blind date on Easter weekend of 2015. My mom’s friend thought it would be a good idea for us to meet, and needless to say she was right. 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 about three weeks 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 we told our families they could not have been more excited. Although I was elated, I was a bit overwhelmed and frightened at the same time with the thought of being a first-time mom of twins and with the weight of a risky pregnancy. Early on we looked forward to every ultrasound. Each week that went by gave me more security. 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. The words “reduction” and “termination” were thrown out. My head started spinning. My blood pressure dropped, and I blacked out right there on the table. We were referred to a specialist and were told to come back in two days. Our drive home was in silence. All of the anxiety I had early in the pregnancy flooded back and intensified.

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. Because we were only 20 weeks into the pregnancy, we were told our two options were to wait it out or to choose to reduce the pregnancy, keeping Baby A from the risk of a stroke. Bruce and I never thought we would ever be faced with such a no-win situation.

We refer to the following week as our darkest days, not knowing what we would find when we went back five days later. Did we lose Baby B?  Is she fading away? Has her sister been affected? We were faced with a dilemma no parents should ever have to face. At the next appointment, the excitement of the ultrasound wasn’t there anymore. We waited as the doctor reviewed the findings and, to everyone’s astonishment, Baby B was no worse, if not a little bit better. A flash of relief came over us, but we knew we were not out of the woods. The doctor told us we could continue to creep along, being examined week by week. At only 20 weeks pregnant, we knew that viability for the twins outside of the womb was still a month away. I was instructed to go on modified bedrest at home and was checked every few days. 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. The doctor even referred to her as groundbreaking. During this time, we experienced an outpouring of support and prayers like I have never experienced before.

At 24-weeks I was scheduled to be admitted into the hospital for steroid treatments and daily monitoring. We were still creeping by. Each day was a victory. The day before I was admitted we were scheduled for an 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. Blood drained from my face again as I asked myself how this could be? Baby A was not our concern. She had been the innocent bystander this whole time. However, 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. Our situation got all the more complicated: on the one hand, Baby A needed to grow to at least 4 pounds in order to assure a successful heart procedure, but on the other hand, Baby B would theoretically grow better after delivery, since her umbilical cord was holding her back. There was plan in place to help Baby A if she was born at a lower weight, but there wasn’t a plan for Baby B since she wasn’t big enough yet to survive outside of the womb.

My stay in the hospital was grueling. I was monitored up to three times a day with paddles strapped to my stomach trying to keep track of two heartbeats at one time for an hour. Add to that three or more ultrasounds a week, and it was a recipe for anxiety like I’ve never experienced. Each time I feared would be the time they would rush me into the operating room. There were days I did not feel like talking to anyone, but I made it through emotionally by the support of my husband and parents, visits from friends and clergy, compassionate nurses, cross-stitching and therapy dogs. Days slowly turned into weeks, and Baby B kept growing just enough to keep them both inside of me. It’s times like these that makes one truly learn to take life one day at a time and give thanks for minutes and even seconds. We began to live by the phrase “what is” and not “what if” in order to focus on what was true that day and not indulge our greatest fears. I had Philippians 4:4-7 on constant repeat in my head.

“Rejoice in the Lord always. I will say it again: Rejoice! Let your gentleness be evident to all. The Lord is near. Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving, present your requests to God. And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus.”

Two weeks into the hospitalization, an ultrasound showed that Baby B had grown enough to reach viability. A 500 gram baby doesn’t sound like much, but it is a promising number in the preemie world. Another two weeks went by, and the doctors became concerned. Fluid levels were dropping, and Baby B was showing signs of distress. I was 27 weeks and 6 days pregnant, and my c-section was scheduled for the next morning at 8 a.m. My emotions were on overdrive. The day that should have been one of the happiest days of my life became the most terrifying. How would my 28-week-old babies handle the outside world? With my head full of doubts and tears streaming down my face I was walked into the operating room. I gained composure and began to pray. “Lord, give me your strength and strengthen my daughters. Lord, give me your love and care for us now.” I had to put it into God’s hands. It was completely out of my control. My husband took my hands, and they began the procedure.

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 Neonatal Intensive Care Unit with the doctors and my husband while I was wheeled into recovery. The next few days and weeks were a blur. We endured a half-dozen intestinal surgeries, a battle with a NEC (a serious intestinal infection common to preemies), a lung perforation 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. We kept in constant prayer for every breath they took. As scary as those first weeks were, we began to acclimate to our new normal. 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.  As they reached nearly 3 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. Avery became the second smallest baby operated on by the catheterization doctor and the smallest baby to ever have received this procedure in the new cath lab at Levine’s. She would need a follow-up at a larger weight, but this would allow her heart to begin to heal.

Weeks turned into months, and our concerns became a little less severe. There were more corrective surgeries to come but each day put us in a better place. We celebrated more milestones. They joined the “4 pound club”, wore their first outfits, used their first pacifiers, had their first baths, began regulating their own temperatures and moved out of isolettes into their own cribs. They increasingly became more alert and less nerve-wracking to hold. On April 27, at 12 weeks old, they reached their original due date. I was not quite sure how to feel on that day. On the one hand, we made it. On the other, I kept wondering how different our life would have been if they were born closer to it. Again, I had to remind myself to focus on “what is” and not “what if”.

After four months in the NICU and at 6 pounds each, Avery and Annie both had the follow-up surgeries needed before they will be able to go home. Though it looks like major surgeries could be behind us at this point, we still try to take one day at a time. There are a few more hurdles to overcome, but there is a light at the end of our NICU tunnel. Looking back over the whole experience it is hard not to see the power of prayer at work. From the first disheartening ultrasound to the sighs of relief after each surgery to seeing six pounds on the scale at bedtime, God has listened to the prayers of those near and far who have walked alongside of us during this journey. God has healed and sustained Avery and Annie through the work of our skilled, devoted nurses and doctors. There have been times when I felt like I could not endure one more monitoring session, see my daughters have one more surgery or hear another alarm go off on the monitor. Yet God has given us strength to go on at our weakest and a peace that passes all understanding.

It is difficult to put down in words all of the emotions and experiences we have had over the past six months, but our story is not nearly complete without the mention of all of the nurses, respiratory therapists, neonatal nurse practitioners, neonatologists, specialists and surgeons who feel like family and to whom we owe our daughters’ lives. We also could not leave out a thank you for the support we have received from the Ronald McDonald House of Charlotte and the families we have met while living there who have become part of our own. We also cherish the love and support from First Baptist Church of Shelby and Myers Park United Methodist Church of Charlotte, plus all of the many churches and groups from across the globe who have given us so much love, support and continued prayers.

 

**Update: On June 28, 2017, Annie and Avery Moser came home from the NICU after 146 days, 15 surgeries and lots of love from the doctors and nurses. Mom and dad are overjoyed and thankful for all of the prayers and support throughout this journey.