January through July 2018

To say it has been a while since I have posted would be an understatement.  But the fact I’ve haven’t had time to sit and process life about sums up what the last seven months have been like. We’ve celebrated first birthdays, had an ostomy reconnection surgery, celebrated first “adjusted” birthdays, and learned the extent of Avery’s hearing loss. This led to multiple trips back and forth to Chapel Hill where we underwent tests to determine the best steps for her. In early July she underwent cochlear implant surgery and was activated about three weeks later. Her joy and excitement when the flip was switched was breathtaking. The past few weeks we have been charged with help her adjust to the devices and slowly turning up the volume programs on them. The process will be slow to help her develop normal hearing and speech but it is a beautiful one. We are so thankful for the therapists, doctors and audiologists who are helping us along the way.

Here is her activation video:

Annie is finally starting to eat a little bit more. This has been one of her biggest obstacles, but with the help of a feeding therapist and lots of patience from family and helpers she is discovering foods she loves. Hopefully one day soon we will be able to step back from using the G-tubes so much. Both girls still need extra calories than they will eat themselves, but we see a light at the end of the tunnel.

Dear 2017,

Dear 2017,

You were the hardest year I have ever dreamed I would face. Half of you I spent in the hospital, and the second half I spent learning how to be a first time mom to preemie twin girls. During your first week I was admitted into the antepartum unit for bedrest. I spent your first month confined to a bed, strapped down with monitoring panels and full of anxiety. During your next five months I spent sitting next to two bedsides in the NICU day in and day out watching monitors, holding my breath during multiple surgeries and earning my honorary RN. I spent the next six months figuring out how to feed two stubborn eaters at one time, manage a quadrupled laundry load and find quality time with my husband. There is a lot I will remember from this year, but I’m sure there will be a lot I will forget (or at least forget to remember).

My life has changed forever, in ways I have always wanted and in ways I never would imagined. I will look back at you with mixed emotions. But through it all, you gave me my sweet girls and made me a mother. There are two sweet faces looking up at me each morning when I walk into their room reminding me that God is still in the miracle business.

Sincerely,

MM

 

 

 

 

The Next Chapter: At home with preemie twins

We’ve finally made it. We have now been home as long as we were in the NICU – 146 days in and 146 days out. Our NICU stay was long in terms of NICU experiences. You are not going to be the same person after spending nearly a half of a year in the hospital, including my four week stay in the antepartum unit. I am slowly recognizing myself again, but learning who I am as a new mom of twins at the same time.

People say to me all the time, “I don’t know how you did it.” I’m the first to let them know that I don’t either. But when you are faced with the unknown and in extremely stressful situations, you have no other choice. It makes me really appreciate the resilience of humanity. People are faced with harrowing experiences all of the time. I think about soldiers during wartime, about survivors of catastrophic natural disasters, those fighting life-threatening illnesses and about those affected by domestic and foreign terrorist attacks. You hear stories all of the time about strength in the face of circumstances no one ever wakes up expecting to happen.

Last December when I learned there was something wrong with my pregnancy my life turned upside down. I wish I could go back to during that time and show myself a snapshot of what I am looking at while writing this post. I have two beautiful little miracles playing in front of me. We still have little obstacles to overcome. Both girls are still struggle with taking a full bottle by mouth, and mealtimes can be a bit stressful. They both are, however, eating solids pretty well and love their veggies. I try to focus on that and not get so discouraged. Like most things so far into my journey into motherhood, I can’t compare my experience with others. There are others out there dealing with similar issues and even more complicated ones, but it’s hard not to have a friend to call up to ask how they got their six month old to drink more than 30 mls of milk. Plus, Avery still has an ostomy bag as a result of her colectomy when she was a very sick two pound baby. We have a reconnection surgery down the road a bit, and I have mixed feelings about that day.

After a total of 15 surgeries in less than five months, one would think it gets easier. In a way it does. You know the drill. You trust the surgeons who not only once but multiple times saved the lives of your two daughters. I just hate to see such a small person experience something so difficult.

My girls have already overcome many obstacles of being born too early. My husband and I have (mostly) kept our sanity after a hard pregnancy, bedrest, a long hospital stay and an extra long NICU stay. I still have moments of weakness and triggers that send me back to feelings of anxiety, but my new normal feels pretty normal these days. I just focus on how far we’ve come and appreciate each smile, each babble, and even each diaper change (even when I’m running on nothing more than a broken night’s sleep, three cups of coffee and a handful of Goldfish).

2 Corinthians 12:9-10 says, “But He said to me, “My grace is sufficient for you, for my power is made perfect in weakness.” Therefore I will boast all the more gladly about my weaknesses, so that Christ’s power may rest on me. That is why, for Christ’s sake, I delight in weaknesses, in insults, in hardships, in persecutions, in difficulties. For when I am weak, then I am strong.”

 

 

How to be a good friend to a NICU Mom

I knew I was going to be a NICU mom when I was admitted into the hospital at 24 weeks pregnant. I went in for 48 hours of monitoring and ended up staying four weeks. During this time I was monitored three times a day, had anxiety inducing ultrasounds every other day and was woken up for vital checks in the middle of the night for a month. There were days when I was stuck in my hospital bed strapped down by monitoring panels when I felt like I was going to physically and emotionally implode. I wasn’t just on bedrest. I was on “let’s wait and see if your babies are going to make it” rest. There was the factor of being confined to a hospital room day in and out combined with the fear of losing my twin girls, one who risked not growing to a viable size and the other with a congenital heart defect. Even now, it’s hard to revisit those days in my head nearly a year later.

But it wasn’t just me who was going through it all. My husband and family felt the stress and the anxiety too. We were in this journey together, but sometimes I selfishly felt like it was solely my struggle. I had the wacky hormones, the task of enduring the monitoring sessions mixed with the constant anxiety of the unknown and a Type-A personality. I felt like a ticking time bomb. It was just plain hard. The best days included visits from therapy dogs and loving ministers who prayed with us and guided me through spiritual exercises to focus on feeling God’s love and protection. But it was still hard.

Then there was the NICU stay. Ours was a pretty bumpy ride times two. While I was in the antepardom unit, knowing that a NICU experience was in our future, people kept preparing us by comparing it to a roller coaster ride. You are strapped in for the ride and have no control of the journey. At least in a roller coaster you know the path of the track. It’s hard to describe the emotions. I was numb. I was scared. I felt joy. I was anxious. I was hopeful. I really tried to take it one day at a time. You had to. One day could feel like a tornado, the next a calm breeze.

I found it hard communicating with people outside of the NICU. The nurses and other NICU parents became my best friends. I didn’t have to explain things to them. If I told them it was a rough day with a lot of bradys and desats, they got it. I could just give a certain look to another NICU mom, and she knew. I loved the support from my friends and family, but it sometimes felt like work to hold a conversation with them. There were a handful of things friends did that really helped me through.

If you are ever in the position to help a NICU mom, here are a few tips.

  1. Send a text that doesn’t require a response. I am known for my response time on things. In the past, if you text or email me, I am quick to respond. In the hospital and NICU, I lost that. My mind was elsewhere. However, when I received texts that included scripture, kind words or just a simple thinking of you, my day got a little better. I didn’t feel the pressure of responding, and I was encouraged by the wisdom and love of friends.
  2. Visit, but make it quick. Visiting someone during a hard time is such a kind way to go out of your way to let someone know you care. During my stay at the Ronald McDonald House, visitors reminded me of my life outside. I would forget that the world was still going on around me. However, when you visit don’t linger too long. A NICU mom is tired and usually on a pretty regimented schedule, with pumping, hospital time and naps. Just like new moms at home, a NICU mom doesn’t sleep that well at night even without a baby crying next to her. We wake up to pump. We wake up to call the NICU to check in. We wake up to answer phone calls in the middle of the night when you daughter pulls her own breathing tube out and has to be reintubated.
  3. Be careful what you say. Don’t give your own anecdotes. There is no standard NICU experience, plus there is a major difference between a preemie and a micropreemie. When people would tell me an uplifting story about their friend’s friend who had a preemie at 34 weeks and spent a whole three weeks in the NICU, I smiled but cried inside. Also, don’t ask, “When are they going to be able to go home?” We don’t know, and it can be a touchy subject. Instead, try to encourage without having to know all of the details. A NICU mom will talk when she is ready.
  4. Give the gift of a massage, a mani/pedi or even a haircut. After things settled a little bit, one of the best things I could do for myself is to get away for an hour for a massage or to have my nails done. It made me feel normal for a bit to go somewhere where people don’t know your situation. I didn’t have to be the NICU mom in the nail salon. Self-care is so important during this time and is the last thing on a NICU mom’s mind. Sometimes we just need the encouragement and reminder to take care of ourselves.

 

Learning to see the “What Is”

Below is a blog I first wrote during our NICU stay. It tells our the first part of our story:

13921062_10210262068258364_6221469825129683744_nI 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.

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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.

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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 five 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.