Would you come and tear down the boxes
That I have tried to put you in
Let love come teach me who You are again
Come do whatever You want to
Then you crash over me
And I’ve lost control but I’m free
I’m going under, I’m in over my head.
-Bethel, “Over My Head”
“We don’t need you NICU!” I repeated for weeks every time Brian and I passed the Neonatal Intensive Care Unit (“NICU”) at UCLA on our way to the Labor and Delivery Unit to be checked for pre-term labor. “My babies will be fine – God would NEVER want them to be in there! Besides, we are almost in the green zone!” I declared.
In The Green Zone
Thirty-two was the most important number I had ever known since the day of our emergency fetal surgery at twenty-four weeks gestation. “If you make it to thirty-two weeks, your kids will be in regular school” my OB joked during our weekly check ups. “You will be in the green zone if you make it to thirty-two weeks,” we heard from our fetal surgeon. “The red zone is 24-28 weeks where children born then have major hurdles to overcome and are often born with disabilities, the yellow zone is 28-32 weeks where kids can have breathing issues and other problems, and the green zone is 32 weeks on. Let’s hope you make it to 32.”
Every morning after the TTTS (Twin To Twin Transfusion Syndrome) surgery, I woke praying for 32 weeks to arrive. Each day that brought me closer felt like a victory. I awoke night after night, fearful I was in labor. I prayed and begged the Lord to keep my precious boys in my womb for just one more second, one more minute, one more hour, one more day, one more week.
To say it was a harrowing time is an understatement. I couldn’t fathom a stay in the NICU for two reasons: I thought I would be too weak to endure an extended hospital stay for my children, and I assumed that because the Lord had miraculously delivered my babies from TTTS, they/we would no longer suffer. I put God into two boxes of my own making.
The morning I woke up thirty-two weeks pregnant, tears streamed down my face as light streamed in my window. I breathed the biggest sigh of relief imaginable. We went to our weekly ultrasound appointment and heard the good news that the babies were up to five pounds each (really large for twins at 32 weeks). Baby A (Theo) had been breech for weeks and was still not moving from his position, but we thought he would turn closer to delivery. My OB was convinced we had a few more weeks to go, and we would be delivering some of the biggest twins imaginable. More sighs of relief.
“You Have Done Enough, My Love. It is Time.”
I finally ventured out of the house to church with Brian that Sunday for the first time since my surgery. I was quickly becoming more and more uncomfortable sitting, sleeping, and combating acid reflux each day. I remember the Lord saying: “This is the last Sunday you will be in church before the boys are born” as we worshipped that day. I decided that meant we weren’t going to church for at least another month. After all, it was the 4th of July and their original due date was August 24th. We had some time.
The next night, I couldn’t sleep. I went into the future babies’ room and started to pray. The Lord reminded me of one of my favorite songs “Come Away With Me” by Jesus Culture. The lyrics read: “Come away with me/ Come away with me/ It’s gonna be wild/ It’s gonna be free/ It’s gonna be full of me.” I knew He was speaking to me and I heard Him say that these were His promises – the boys were going to live a victorious and rich life, but that didn’t mean it would be easy. The terms wild, free, and full of God do not describe a life absent pain and struggle. I pondered these things in my mama’s heart.
That Tuesday, Brian was providentially working from home and I was getting ready to head to my weekly ultrasound when the first signs of labor began. Ashen white, I ran into our office to grab Brian and off we rushed to UCLA. I knew that thirty-two weeks was the “safe zone,” but I also knew the babies needed to stay in as long as possible, ideally a few more weeks.
At UCLA, we took our weekly stroll by the NICU (where I once again pronounced we would never have our children there) to the Labor and Delivery Unit. We discovered I was in the very early stages of labor, but it still looked like it would be several weeks before delivery. I received a steroid shot to speed up the babies’ lung development in case they arrived early. I was asked to return within twenty-four hours for the second steroid shot. Brian and I went home and I tried to relax, but I still felt off. That evening, my water broke and we rushed back to UCLA, missing the infamous traffic on the 405 (a HUGE answer to prayer!).
At the hospital, we found that Baby A’s (Theo) water had broken but Baby B (Henry) was still intact. Amniotic fluid continues to replenish even after the sac breaks (yes, the human body is amazing), so the decision was made to park me in the hospital as long as I could manage until I started to dilate. I felt relieved knowing I had made it to the beginning of the end after such a long, tiring journey.
I started multiple IV drips, took the second steroid shot, and settled in for what I thought would be several weeks. Thankfully, my parents were already on a flight as we thought birth was imminent the day before. After a long day in the hospital, Brian and I tried sleep that evening. I was weak and tired, but resolved to hold on a few more weeks.
In the middle of the night, a doctor arrived from the NICU to walk us through the admitting procedures once the babies were born. I tuned her out as I denied the inevitable, once again unable to process or comprehend my babies undergoing a hospital stay. I believe she informed us about many of the difficulties that could and would lie ahead, but I turned a deaf ear.
In the midst of another sleepless night, the contractions started to get closer together. I gritted my teeth and put on a smile each time a nurse came to check on me. “I am feeling just fine, no worries here!” I would utter each time my contraction monitor spiked. “Just hold on a few more weeks,” I told myself second by second, minute by minute, hour by hour.
Then I heard the voice.
“You have done enough, my love. You have held on. It is time for them to enter the world.” I knew it was Him. The One who made my babies. I tried to fight Him one last time, and considered begging the Lord for more time, but exhaustion had set in. I knew it was time. I thought about the fact that my husband and his twin were born at twenty-eight weeks thirty years prior, survived, and thrived. It gave me hope. They not only went to “regular school” but ended up graduating from law school, as well. Nothing is impossible for God.
The Lord led me to Jeremiah 1:5 that night, which reads, “Before I formed you in the womb I knew you, and before you were born I consecrated you; I have appointed you a prophet to the nations.” It was a beautiful promise that He had appointed the babies’ birth, even though it seemed early. They were appointed prophets to the nations. I trusted the Lord would deliver on His promise.
“Oh, we need you, NICU!”
At 7:00AM on Friday, July 8, 2016, my OB arrived in my hospital room to check in. After a quick exam, I will never forget her words: “You ready to have some babies today?”
“Brian, I think you need to wake up,” I announced, “It’s time! Let everyone know!”
“Doctor, do you think we could wait until 10:30AM or so for the surgery so all our family can arrive?” Brian asked. All he had to do was look at my doctor’s face to know that was a big no. Theo had moved precariously far down in the birth canal – I’ll spare the details about how we ascertained that fact. We immediately began prepping for an emergency C-Section. My body shook as I prayed and readied myself for another grueling day. After our fetal surgery, we had two mandatory, in-depth echocardiograms that revealed that the babies could be born with potential heart issues requiring surgery, but it was impossible to tell until birth. I also knew many preemies were born with weak lungs. My mind stayed on Him as I prayed for strong lungs and strong hearts for the babies.
My parents arrived minutes later, just in time to kiss me goodbye as Brian and I walked in the operating room. I was glad Brian was with me – my constant supporter, my biggest encourager. I will never be able to explain how difficult it was to say goodbye to him during my fetal TTTS surgery. This time, we were hand in hand, joined together as the C Section began. What a relief!
The team at UCLA could not have been better – all gifts from God. I barely felt my spinal tap; I felt no pain; my doctor narrated the process for me; I had the best nurses possible tending to my every need – including lavender scented towels and my own Pandora station (I chose Matt Redman – our favorite) – I was truly in amazing hands.
I will never forget hearing Theo and Henry for the first time. I couldn’t see anything because of the drape over my stomach. I waited and waited to hear their cries. They were a distance away from me, but when I heard their screams, my heart leapt with joy! I asked Brian over and over how they looked and if they were okay, and he assured me they looked strong and healthy. Theo was born at 5 lbs 1 oz, and Henry came in at 4lbs 14 oz. Small, but mighty little men.
It was a different kind of birth in that the second both babies were born, they were whisked away to the NICU by a team of nurses and doctors. I didn’t have the chance to hold my babies that day. I first touched them laid out on a hospital bed as I reached my hand through their incubators.
I read books and went to classes that discussed how important it is to hold your baby and nurse after birth, but that was simply not my story. I suppose I could’ve been upset about missing out on all the elements of a natural birth, but I was so elated they were alive, I didn’t think about it. That is certainly the perspective the fetal surgery and high-risk pregnancy gave me – that perspective was a gift from Him. I will never lament missing a natural birth as I am grateful for any birth at all.
I spent the rest of the day dozing in and out of consciousness as my nursing team woke me for medications and tests. I was beyond tired and could feel intense pain rearing its ugly head every time I woke up. I developed post delivery pre-eclampsia, so my blood pressure skyrocketed. I started a series of breathing treatments and rounds of heavy medication. I’m pretty sure I said, “I’m on drugs” about every hour when asked how I was feeling. Thank goodness for medication to help me through.
As I recovered, I heard the sounds of crying babies in other recovery rooms with their parents. My heart and my arms yearned for my babies, but I rested knowing they were in the best care possible. Brian went back and forth to the NICU and brought reports. Doctors and nurses informed us about the babies’ progress throughout the night. Theo had been born with a pneumothorax (collapsed lung) they said, and he required immediate surgery. My eyes grew large as I asked Brian again and again if the boys were okay. “Yes, honey, they are fine,” he kept repeating to me. This was the first of many times I would hear that things like collapsed lungs are normal for premature babies, and not a huge cause for concern. How that sinks into a new mother’s head and makes her not worry is beyond me.
A nurse burst into my room in the middle of the night announcing that Henry was ready to feed and she wondered if I could start pumping to get breast milk. As politely as I could muster, I uttered that I was too tired and I had to rest and would try tomorrow. I almost let her have it. She seemed confused as she turned and left. I was simply at the end of my rope.
“Henry will probably only be here a few days and Theo maybe a week” I heard that day. “Well,” I thought, “I guess I can handle them being in the NICU until we head home in a few days. They’re just fine.”
In For the Long Haul
I woke the morning after they were born and made the “first walk” after surgery. The pain (while hopped up on strong pain meds) was incomprehensible. I had braced myself for what I had heard was extreme pain, but lifting myself out of bed and walking to the bathroom felt like a million knives stabbing all over my stomach and pelvic area, coupled with the feeling all my insides falling out.
My attending nurse, or Angie the Angel, worked a great miracle in helping me out of bed that day. I remember telling her I couldn’t get out of bed because I was in too much pain, and she smiled patiently but firmly as she told me I had no choice, and I had to get up.
I remember recognizing right then that this journey called motherhood would be full of moments like this – where I would have no choice but to gather my strength and get up. It is in these moments I have had to reach for God’s great hand to carry me through. Lauren Daigle’s song “My Revival” was my anthem those first few months as I leaned into His promises in Isaiah 40 to renew my strength: that I would walk and not grow weary, I would run and not be faint, that I would soar on wings like eagles, and find my rest in his everlasting name. I still find myself constantly begging God to deliver those gifts to me.
When I arrived at the NICU, I first had to make it past the front desk, which only allowed parents with ID bracelets or their guests to enter. I still have our ID bracelets — though they once were printed with the babies’ names, they are now completely blank – weathered friends that accompanied us on our many visits to the boys.
I immediately removed all my jewelry and scrubbed in before I was allowed to walk back to the boys’ “pod.” As I walked, I took in the NICU for the first time – the smells, the sounds, the sights. It was overwhelming. At the NICU at UCLA, there are twenty-two beds for babies, and four to a “pod.” At all times, there are surgeries being performed on the babies at their bedside, nurses running to and fro, crying families, laughing families, families taking their babies home, teams bringing new babies in, screaming babies, wailing babies, and silent babies. Babies born at twenty-three weeks, babies under one pound – measured in grams, babies only one pound, babies way too big for their gestational age because of genetic disorders. The common thread was the sound of medical equipment – warming bassinets, beeping monitors, wires, IVs, medications, washing stations, and pump stations for all the mothers who could not directly feed their babies (like me).
The common thread was also that we were all in there together; soldiers fighting a different battle for our children each day. While there were curtains that could be drawn around each baby, full privacy was not possible. As we walked by the front bank of desks that held the receptionists, some nurses, and the attending physician, I was struck that everyone knew who we were. We were famous! I was Theodore and Henry’s mom – the new twins in Pod 3. Everyone smiled and asked me how I was doing every single time I made that walk. I remember looking in the mirror down that corridor thinking, “I’m a mother? To two babies? How did this happen? And I’m supposed to be strong enough to endure a stay in intensive care?” “Will they live?” was the constant question on my mind – the biggest battle I faced every day as my children struggled to breathe, and struggled to eat, and the wounded came and went on the battlefield in Pod 3.
I remember standing at the front of the boys’ pod, not knowing what baby to go to first. From that first moment, my heart was divided. It was equal, but it was in two parts. That is one of the crazy things about being a twin mom. Loving two at once, for the first time. So many people have asked how I can do it, how do you survive with TWO newborns instead of one. I can only say the Lord. God knew my increased need. Therefore, He gave me an increased capacity and an increased ability to love and care for two. Much of the past year has been my relying on this power infused by the Holy Spirit – the humbling circumstances led me right to my knees to ask for help. Otherwise, I likely would’ve forgotten to ask.
I went to Henry, my second born first, as Brian was with Theo across the pod. The first thing I noticed was that he was covered in wires and his monitors constantly beeped. My eyes were drawn to the tiny IVs stabbed into his precious, little hands, with the tiniest pools of blood around them. As I lowered myself into the chair next to his incubator, his nurse Renee changed him, wrapped him in a blanket, pulled all of his wires together in a way only a professional could, and laid my son on my bare chest. Henry was so light – under five pounds. I remember holding him and feeling more joy exploding from my heart than I ever knew possible. I spent a good long time there, cuddling with him. He couldn’t feed as he was born with a weak suck reflex and was fed through a tube in his nose so we didn’t attempt a feeding at that time. Before I moved over to hold Theo for the first time, I remember wanting to rip off all of the IVs and wires, put him over my shoulder, and take him out of the NICU forever. That feeling would be constant in the days and weeks ahead.
About an hour later, I shuffled over to Theo’s bed to hold my firstborn. I will also never forget that feeling – the overwhelming joy of holding my firstborn son for the first time. By the time I had cuddled with both, I was utterly exhausted and my medication was wearing off. I returned to my hospital room in my wheelchair, already yearning to be reunited with my tiny fighters. We left the hospital three days after I gave birth. I felt devastated leaving without either one of my babies, and cried almost the whole way home.
The next few weeks were some of the most challenging of my life. Every trip to the NICU felt like a battle as I girded my mama’s heart for all the screams, surgeries, and weeping families we passed on our daily trek to the boys’ pod. While the NICU was a place of happiness, it was also a place of great sadness. Since UCLA is a teaching hospital, we had residents relating that Henry had a potential brain bleed (or maybe not based on his head scan – this turned out to not be accurate, thank goodness), Theo had fluid on his formerly collapsed lungs again (or maybe it was better, but unsure), and many other issues and diagnoses came and went. Every day we got more reports with their progress or lack thereof. It seemed like they would take two steps forward followed by one step back.
As I recovered from home, I woke every few hours to pump and provide milk to take to the NICU for the babies, since they still could not nurse due to their prematurity. Talk about ironic, crazy, and difficult – waking in the middle of the night with no baby in sight to provide milk. I am so grateful to God for giving me plenty of milk to feed them. I watched every day as mothers just like me went into the NICU, hobbled over (as many had had C sections) to their babies’ bedside and hooked up to a pump to sacrifice for their children. We were all “pumping” warriors together, fighting to give our little loves the best fighting chance.
During one of those late night pumping sessions, the Lord led me to Isaiah 51:3. It reads: “For the LORD comforts Zion; he comforts all her waste places and makes her wilderness like Eden, her desert like the garden of the LORD; joy and gladness will be found in her, thanksgiving and the voice of song.” I was refreshed by His truth time and again as I surfed the waves of anguish I felt being separated from my babies. It was so unnatural, and so painful. Coupled with various complications from a C-section recovery, breastfeeding issues, sleeplessness, raging hormones (no one told me about the night sweats-agh!), I look back in awe that we made in through.
The babies didn’t have any more surgeries, but were constantly off and on oxygen and learning to feed properly. Since the NICU at UCLA is the best in Southern California, babies from all over the city and state brought there, with UCLA deliveries being a priority (thank goodness!). We joined the NICU support group and met other families in our situation, and we bonded with them. We got to know the sweet Chaplain and would pray with her often. We became like family with our NICU nurses, in particular one woman we now affectionately call Auntie Bessie.
I learned a completely new language with words like “Bradys” (for a Brady “episode” where breathing ceases), “D-sats” (for desaturation of oxygen), and “Apnia” (more prolonged breathing cessation). All three issues were “normal” for premature babies, who are typically born with underdeveloped lungs. I learned that the babies would not be discharged until they went at least five days without “As, Bs, or Ds.” They also had to take every feeding from a bottle – which at the beginning seemed almost impossible as they were exclusively fed through tubes and IVs.
I would get calls that Theo or Henry had “stopped breathing” for a few seconds, but recovered without intervention and it was not a huge deal. MY CHILD NOT BREATHING?! Not a big deal!?! This was impossible for me to wrap my head around, but slowly and surely I grew an unbelievably thick skin. I know the Lord was doing a great work in each episode, in each day, in each hairpin turn. He was building a strong foundation, tearing down the boxes that I had put myself in and that I had put Him in to grow me into a lioness of a mother. Things that had scared me in the past became small issues as I learned to face fears in His strength.
One thing that didn’t scare me was the babies’ strong hearts. Though their heartbeats were rapid (again, due to prematurity), not one doctor in the NICU determined their hearts were at issue. I knew from our prior echocardiograms that the boys were going to need more heart testing once they were born if they showed any signs of complications (the heart surgeon had insisted), and I was relieved to think we were free and clear of that issue.
One day a few weeks after their birth, Brian and I were walking into the NICU when we literally bumped into the lead heart surgeon that had preformed our prior echocardiograms. I immediately said hello and told him the boys were doing really well. That’s when I got the look. The “I still need to order an echocardiogram on your babies and no one told me they were born” look. Brian and I both froze, trying to backpedal but we had already told him all he needed to know.
Later that day, our nurses said the doctor had stopped by the boys’ pod to check on them, and he was chased out of the pod as the nurses continually told him “These boys don’t have ANY heart problems! No heart issues here!” I smiled as I thought about our NICU “family” protecting the babies from the over-concerned doctor as he tried to order the tests.
I later found that the doctor got his wish and overrode the NICU doctors to preform the echocardiograms on the babies. Thankfully, our nurses told us after the perfect echos had come back, making sure not to unnecessarily concern us. That was the level of care we had during our time there.
The Lord led me to Jeremiah 29:7 when I asked Him for guidance in the NICU. It reads: “But seek the welfare of the city where I have sent you into exile, and pray to the Lord on its behalf, for in its welfare you will find your welfare.” I believe through our circumstances and this verse, the Lord was asking us to not only physically but spiritually, mentally, and emotionally enter in the place I said I would never enter. To love the employees, the families, and the patients there and pray for their welfare, as it said in Jeremiah.
During one of our (very sparsely attended) support group meetings (just Brian and me), the leader remarked that many children in the NICU did not have parents regularly visiting at that time. That absolutely broke our hearts. We learned that at times parents abandon their children in the NICU because they are unable to deal with profound disabilities, or imminent death. We prayed for the babies and for their families, and we do to this day. As Thanksgiving, Christmas, and New Years passed this year and we celebrated at home with Theo and Henry, our minds thought of babies and families in the NICU as we prayed for their welfare.
After all our time with her, Auntie Bessie has become part of our family. She has come to watch the boys on various occasions since they have been home. She brought them gifts. We have stayed in touch with her, sending her pictures often of her “bubbas.” Bessie told us that a few days before she met our boys, she had been going through some very difficult personal circumstances. She said our babies brought her great joy during a trying time in her life. Hearing that brought tears to my eyes. It was yet another confirmation of His master plan to lead us through a trial for His purposes and glory.
Recently, I was able to go back to UCLA to visit a dear friend’s baby who had just undergone emergency kidney surgery. It was surreal to go the place I had spent so much time. It was beautiful to feel the compassion this entire experience birthed in me. To feel the solidarity with my friend who was also concerned for her precious little one, trusting God with the outcome and praying for His hand to save; to come from a place of knowledge and understanding in ministering to my friend. I know that was one of God’s many purposes in our journey.
The Boys’ First Roommates
About two weeks into the hospital stay, the boys’ first pod mate, a precious little girl born several months prior at one pound, started to take a turn for the worst. As I said, some babies in the NICU were completely silent, and she was one of them. We watched in horror as family members came and went, the tears flowed, nurses had heated phone calls next to her crib, and the Chaplain returned time and again to minister to the family. While we didn’t want to pry and tried to give the family and the baby their space, it was obvious the staff did not believe this tiny little girl was going to survive much longer.
We took to our knees to pray for her, asking the Lord to work a miracle on her behalf. I remember going back day after day, happy to see that she was still there. We saw nurses going in and out, and several surgeries taking place in her crib, that was next to Theo and across from Henry. One day, however, I arrived to see the top of her incubator had been lifted, which meant her tiny body was no longer being heated. This continued for days, until we arrived one day and she was no longer there.
The day that sweet little girl went to Heaven we cried many tears. Great fear for the lives of my own boys and great sadness set in. I will never understand why God allowed my boys to live and that sweet girl to meet Him in Heaven. The loss of babies and children is truly inexplicable, yet I know He does a great work in the midst of loss. I know that He has a plan to bring beauty out of ashes. I remember that tiny angel often, and pray for peace for her family while thanking God for the lives of my own sons.
The boys received a new “pod mate” the next day. Unfortunately, unlike their prior roommate who was so sick she was silent, this sweet girl was so sick she screamed all the time. I groaned every time I heard the crying, as I so wanted my boys to have a peaceful environment to grow. Teams of doctors and nurses crammed into the pod for several days, having meetings, discussing treatments, and going through the options with the parents. I remember hearing the parents of the little girl softly cry as they signed consent waivers for a surgery that sounded like it had a very low success rate.
“This is the only time I’ll let my little girl sleep in the same room with boys – I’ll make an exception!” I heard jokingly at the sink when I was cleaning my hands one day. Surprised, I looked over to see the sweet mom of our little pod mate gesturing at my boys with a smile. I joked back that the feeling was mutual as I gave her a very knowing smile and told her that her little girl was in our prayers. “Someday soon, our kids will be home and no more slumber parties like this,” she said. I remember choking back tears as I had heard the risks of the upcoming surgery.
From that moment on, every time her daughter screamed (which was often), I thought of her sweet mother, pressing on in the midst of pain and uncertainty with joy and dignity. Instead of cringing, I prayed and I asked for her healing when I heard her screams. I will never forget looking in their eyes the day we left, as the family was still there, awaiting their own discharge day. It was a look of joy but a look of desperation. I do not know if they are still there or if the surgery was successful, but that beautiful girl was another reason the Lord had us on the battlefield in Pod 3, fighting for victory alongside her friends Theo and Henry.
A few days before we left, we met a father with newborn twin boys – identical, just like Henry and Theo. I did my best to encourage him that he soon would be following our lead and making an exit. With a huge smile and great fortitude, he told me that he hoped that was true, but he and his wife had lost their last child in the NICU a year prior. Yet he said he believed he would get his sons home soon. My heart broke as I smiled through now teary eyes. I will never forget his joy and hopefulness, in spite of their past.
On a particularly difficult night during that time, the Lord gave me a vision of my boys when they were older. Of their lives as men on mission for Him. He gave that in a dream to one of my dear friends as well. I remember texting another friend that God gave me the long view, which I so desperately needed to see in the interminable short term. I will never forget her words: “Oh Jessie, what a magnificent view it must have been!” And it was. I believe we all can and should ask the Lord for that vision, that long view of the big picture in a situation when the day to day seems too overwhelming.
The Lord showed me two passages full of His promises for my sons when fear reared its ugly head. Joel 2:21-32 says: “Do not fear, O land, rejoice and be glad, For the LORD has done great things.” He also led me to Isaiah 44:2-5: “Do not fear, O Jacob, My servant. And you Jeshurun who, I have chosen. For I will pour out water on the thirsty land and streams on the dry ground. I will pour out my Spirit on your offspring, and My blessing on your descendants. And they will spring up among the grass like poplars by the streams of water.”
Those words filled my soul, as I was in a thirsty land and dry ground. I held on to His promises for my sons. I declared them in my heart, even though my lips were too tired to speak.
After a few weeks, the boys were making good progress and it seemed almost every day that they would be coming home soon. The “five day” rule of no “As, Bs, and Ds,” made us constantly restart the clock and push back our discharge date. I grew frustrated with the constant questions of “When will they come home?”
When I saw my babies, I was paralyzed with fear because of their diminutive size and perceived frailty. God spoke to that fear directly with His word. Psalm 8:1-2 reads: “O Lord, our Lord, how majestic is your name in all the earth! You have set your glory above the heavens. Out of the mouth of babies and infants, you have established strength because of your foes, to still the enemy and the avenger.” God also led me to 1 Samuel 16:18: “But the Lord said to Samuel, “Do not consider his appearance or his height… The Lord does not look at the things people look at. People look at the outward appearance, but the Lord looks at the heart.”
Many of the doctors and nurses had said “Oh, don’t worry, babies are MUCH stronger than they look.” That didn’t bring me comfort. It was hearing the word of God that my sons were strong, that He had established strength through them, and that God was looking at their hearts, not their tiny size, that brought me peace.
In all of the craziness of the NICU, I felt unable to give anything in terms of time or energy to the Lord. I turned to the story of the widow’s mite one morning as the Lord reminded me that as long as I give what I am able, no matter how much that is (and it will surely change from season to season).
One Down, One to Go
Almost three weeks to the day after the babies were born, that glorious day of all days arrived: the day we were cleared to go home! My heart soared at Henry’s consistent positive reports. Theo followed close behind, and I prayed desperately for a double discharge and a lenient attending physician that might overlook Theo’s continued need for oxygen and just let him come home with us.
I had a vision of our exit from the hospital: I saw our twins perfectly healthy, leaving the hospital with their double stroller and their two car seats, amidst balloons, gifts, and loud cheering down the NICU hallway. What was NOT my vision was doing this whole song and dance with one half of that equation.
“You know one of your twins is going to go home way before your other twin, right?” said the attending physician to me the day before Henry was set to discharge. I gulped and nodded in agreement as I enticed my mind to start considering a new reality. I felt nauseated and sick at the thought of separating my boys and our family, especially given Brian and my twin “experience.” Twins know that twins are NOT to be separated; they stick together!
The day we arrived to take Henry home, Brian’s parents arrived as well to stay behind with Theo as we made a break for the free world. I kept it together until we placed Henry in the stroller and I looked back at Theo hooked up to all his monitors and oxygen. I absolutely lost it. The walk out of the NICU, with Henry in one half of the stroller, placing him in only one of the two car seat bases in the car, was both exuberant and horrifying.
That first night home, as I held Henry and thought of Theo, I felt God’s word wash over and heal my fears again. God spoke to me about all the incredible things He had in store for Henry, that Henry was special both individually and as a twin (as was Theo). It gave me a very different perspective on twins, and a reminder that I needed to love them both individually and corporately. That time also allowed Brian and I to adjust to having one baby at home, while we waited with hopeful anticipation that Theo would join us soon.
One week later, we got the call we had dreamed of for a month: it was Mr. Theo’s turn to come home! We arrived at the NICU, giddy and delighted. As we pushed Theo out of the doors that had been so hard to walk in, we erupted with shouts of praise and tears of joy – the long, strange, difficult, crazy journey was over! Hallelujah! That will always be one of the best moments of my life, and our lives together.
Giving Credit Where Credit Is Due
At every turn throughout our lives together and my pregnancy, my sweet husband was deep in the trenches beside me. Brian was given the gift of a lifetime in nine weeks of paternity leave, so he was able to help twenty-four hours a day for the first nine weeks of the boys’ lives. His service to me and his love for our family literally kept me sane throughout those days and weeks. He led our family by serving, as Jesus modeled.
In the weeks to come after their birth, there was no task too small, too difficult, or too disgusting for Brian David Fahy. He carried me to the bathroom, changed my clothes and my bandages, helped me use the toilet, listened to hours of my crying and my pain, washed dishes, cleaned the house; you name it, he did it. He visited the NICU every single day of the month the boys were there, changed diapers, learned how to feed bottles, and held the babies when I was too weak and had to rest. He prayed for me, sang over me, and made us all laugh with a plethora of silly songs and ridiculous antics. His humor brought laughter as a healing balm to my pain. I will never forget him making the whole nursing staff erupt in laughter as he was sprayed with Theo’s poop in the middle of one of his first diaper changes and leapt across the room screaming “Holy crap! That’s a TON of crap!”
One day, one of our nurses in the NICU remarked what a great mother I was to the boys. I will never forget Auntie Bessie correcting her: “They’re a great team.” She was right on.
That is the greatest work the Lord has done in us this year: made us a team. An all-star team, I would dare to say, given all the man on man defense we have played. We were asked the goal of our marriage through a study we did this fall, and we decided that it is unity. More than the health of our sons, more than the fact that we are parents, more than anything else – our martial goal is unity with God and with one another.
I just finished Chip and Joanna Gaines’ book “The Magnolia Story” (because who isn’t obsessed with Fixer Upper?!) and there is a quote from Joanna that perfectly captured what I learned about our relationship this year:
“One pretty amazing thing we learned early on was that the more time we spent together, the better our relationship was. I think a lot of couples feel the need to get away from each other now and then, to take little breaks, and they come back after a girls’ weekend or a guys’ fishing trip or something all refreshed and happy to reconnect because they missed each other.
We were just the opposite, and still are. We seem to give each other energy. We function better together that we do apart, and I don’t think either one of us had ever felt the urge to say, ‘I need a break from you.’”
After spending every waking moment together for nine weeks, I cried like a baby when Brian left for work. Through circumstances more trying than we envisioned possible, we learned just how well we function together.
Last Thanksgiving, Brian and I celebrated hoping that might be our last holiday season as a family of two. We asked the Lord to bless us with children if that was His will. We did not imagine what the next year would hold. I imagined all perfect blessings, not the blessings that come with struggle and pain – which are now, in my opinion, the richest blessings of all.
In 2016, our hospital bills without insurance approached a million dollars. I had five surgeries – one emergency fetal, one emergency C-section, and three MOHs procedures to remove skin cancer on my face in the past few months since delivery. As I type, I have three bandages on my head and over twenty stitches in the middle of my forehead. I had never had an IV put in prior to any of these surgeries. I had never been diagnosed with anything serious.
I see that Jesus works in surgeries, in healthcare, in excellent surgeons, just the way He worked thousands of years ago when he stretched out His hand to heal.
For some reason, the very last skin cancer surgery this week was the one that got to me. I winced on the operating table as they sliced open my forehead and clutched on Brian’s hand as my bloodshot, tired, watery eyes gushed tears. Once again, I released by grip on my ability to cope with life and let His power perfect my weakness.
This has been a year of weakness. Of experiencing bone chilling, hair raising, inexplicable pain and anguish that I wouldn’t never believe I could manage in the past. At every turn, He has sustained me. His Spirit has washed over me. His power has been made perfect in my weakness.
I am not perfect, He is. I fall short each day, I complain, I don’t have enough sleep (will I ever as a parent?!) and feel pretty imbalanced most of the time not to mention suffer from a new form of ADD and the inability to make decisions, I often forget to pray, I inappropriately take out my frustrations on my husband, I check Facebook too often and have an Amazon shopping problem that might need therapy, but I place my broken self in His hands and feel His love, His affirmation, and His strength. As the Bethel lyrics say, “I have lost control but I’m free. I’m going under, I’m in over my head.”
God has given us all we need. This has been a year of tearing down the boxes that I put God in. The “God would never” boxes; the “I am not strong enough to handle that” boxes; the “only other people suffer” boxes. It has felt so wild, so free, and so full of Him to experience the freedom of going in over my head.
I look at my two perfect, growing angels and cry almost daily with gratitude for their lives. I know that right now, there are many families in NICUs across the world; many mourned this past holiday season without their precious babies for the first time; many celebrated with babies marked by profound disabilities; many wished they could conceive a baby. It was an honor to add our TTTS surgeon, the NICU staff, and my OB to our Christmas card list this year – a reminder of the expanded territory the Lord gave us in 2016.
Both babies had their first colds during their first Christmas. This was not the scenario I had worked out in my brain. Brian and I ended up eating Chinese food with my parents in our apartment, about as tired as we had first been when the babies were born because they were so fussy from their colds.
As I took in that scene, reeling from the disappointment of many expectations of the babies’ first Christmas, it hit me. I should not strive so much for the “easy” moment. For the “safe” time. We have right now. We have this second to find peace. We are blessed whether we are inside the NICU at Christmas or home at Christmas because Jesus offers peace in the feast and in the famine alike.
As I wrestled with bringing this truth to bear in my heart, God reminded me of one of my favorite verses, Isaiah 33:5-6. It reads “The Lord is exalted, for he dwells on high; he will fill Zion with justice and righteousness, and he will be the stability of your times, abundance of salvation, wisdom, and knowledge; the fear of the Lord is Zion’s treasure.” His stability throughout all we had endured over the past year, and everything we will face moving forward is our greatest treasure. I am not afraid of the future because I walked through the fire this year and was not burned.
Luke 12:48 reads: “Everyone to whom much is given, of him much will be required…” From His word, I know that because of the lavishness of His gifts to me, I will be stretched further than I can imagine – much is required of me. I love the lyrics of Matt Redman’s song “Never Once” (inscribed in our wedding rings) that speak of this beautiful balance of pouring in and pouring out: “Every step we breathing in your grace, ever more we’ll be breathing out your praise.” I know it will not be easy, I know I will not be sheltered from difficulty, pain, and struggle. Yet I know it’s going to be wild, it’s going to be free, and it’s going to be full of Him. I know I will give all I have so others can know my beloved Jesus – who has been with me every painful step and every glorious leap this year and will be forevermore.