James
“The doctor wants to do the c-section today, but we told them the adoptive parents need to get here first. So they’re willing to wait one more day. Can you get here?” The call from our son’s birth father came in at 1pm on a Wednesday. They’d chosen us as their child’s adoptive parents just 2.5 weeks prior. This called indicated that we would need to rush to West Virginia to meet our son 4 days earlier than planned. Chills spread throughout my body as I replied, “Of course! We’ll pack and leave tonight!”
It never crossed my mind to wonder why the c-section was being moved up. We knew James’ birth parents struggled with Opioid Use Disorder and as far as we knew, James’ birth mom had been on Methadone since 27 weeks. With our limited knowledge of the world of opioid addiction and prenatal opioid exposure, we didn’t have the experience to understand that the c-section was being moved up in order to get our son out of the damaging environment he was in as quickly as possible.
The morning our son was born, we were told his birth mom needed to be put under anesthesia because she could feel everything, no matter how many drugs they gave her. I hadn’t realized this could happen, but her tolerance for pain medication was so high that they weren’t comfortable giving her the amount she would have needed to block the pain. I felt awful for her that she was going to have to endure this. When James was delivered and clean, they placed him in a bassinet by her bed and woke her up. She was still in an unspeakable amount of pain and the nurses seemed confused about how to dose her medication. While she somehow managed to hold herself together, she invited us into the room to meet our son.
I reached out and grabbed his hand and he squeezed my finger instantly. My inner voice said, “There you are. I know you and I love you.” My heart recognized him and it was as if I’d known him all my life. Truly the most transcendent and divine moment I’ve ever experienced.
With my other hand, I reached over to James’ birth mom in her hospital bed and grabbed her forearm and squeezed it. With a choked up voice, I told her he was beautiful and that I was so sorry she was having to go through this pain. Her body shook and she downplayed her misery with a smirk. James’ birth dad left the room, saying he needed to run an errand but would be back in a few hours. James’ birth mom told us we should take him into our hospital room while she tried to get some pain relief and some rest, so that’s what we did.
We took him back to our room and held him against our chests, skin-to-skin. We stared at his face and got to know every tiny millimeter of it. We changed some diapers. We listened to music together. We attempted some feedings. We existed in pure bewilderment and tentative joy, elated but ever conscious of the fact that James’ birth parents didn’t have to sign adoption papers for two more days. This could all fall apart at any moment. We also knew that he could go into withdrawal from prenatal opioid-exposure at any point that day. But for now, he needed safe arms to hold him and hearts to love him - so that’s what we did.
Many hours went by before we heard from James’ birth parents again. His birth dad walked into our hospital room and invited us to their room so they could spend some time with James. After chatting for a bit, we asked if it would be alright to leave and get dinner then return to their room. They were happy to have us leave James with them, so we did. About 30 minutes later, we came back and were stopped by a nurse. They seemed a little stressed about the fact that we had left. “We thought James was with you. Could you let us know next time you want to leave? We’d be happy to watch him for you,” the nurse said.
I was confused about why they didn’t want me to leave him with his birth parents. Our adoption agency had really emphasized how important it was for us to build a good relationship with them and allow them to get to know their son, so that we could have a healthy open adoption. I wanted James’ birth parents to have an opportunity to hold and spend time with the baby they’d brought into the world, if they wanted to. So leaving him with them felt like a respectful and loving thing to do.
What we didn’t know (and wouldn’t understand for 24 more hours) was that James’ birth dad had picked up drugs on that errand he ran after the birth. He brought them back to the hospital and administered them to James’ birth mom to relieve her untouchable physical and emotional pain. The nursing staff were used to interacting with people on drugs and recognized the signs by their behavior. We were not - so we really couldn’t even tell they were high when we left James with them.
The nurses told us they had decided to move our room to the other end of the labor and delivery floor, because they wanted to keep James’ birth dad from barging into our room unannounced. They said they didn’t like that when he’d invited us into their room before dinner, he had come in without knocking. In hindsight, we know they were trying to minimize interaction between us and protect James because they were already aware that drugs were in their room.
That first night, James began to show signs of opioid withdrawal. The leg tremors I had seen glimpses of when we changed his first diaper became more constant. His precious little 5lb body shuddered. He sneezed repeatedly. His cry became high-pitched and miserable. He refused to take a bottle. He sucked on his pacifier with aggression and urgency. He ran a fever and began to cry inconsolably. The nurses helped us immensely through that first night. By the next afternoon, we learned he’d need to move to the NICU for a feeding tube and closer monitoring as withdrawal had set in. Our hearts broke and we were fearful, but we knew this was a possibility when we agreed to adopt an opioid-exposed baby. It was the right place for him to get the care he needed.
Before we moved to the NICU, I was sitting in the room rocking him and staring at his little face while he managed to get a few minutes of desperately needed rest.
The door opened and a nurse stepped in with a police officer. The officer was wearing a tactical vest and carrying a gun, taser, and radio. He asked me a few questions about how we knew James’ birth parents. We told him that they had chosen us to adopt their baby and that they struggled with Opioid Use Disorder. He informed us that he would be partnering with hospital security to physically remove James’ birth dad from the hospital, due to the fact that he brought illicit drugs onto the labor and delivery floor, administered them to James’ birth mom, the nurses reported that he had been doing drugs himself in the bathroom in their hospital room, and he had apparently become belligerent and disrespectful to nursing staff. The staff was trying to determine what drugs James’ birth mom was on, so that they could reverse them and get her discharged. She was incoherent and whenever they attempted to take her blood, James’ birth dad became protective of her and tried to stop them.
My heart absolutely broke for what they were going through — and for James missing out on these precious few early days we could have shared with his birth parents.
The police officer gave me the number for local police in case things went sideways, showed me where the emergency security button was in our room, and advised me to stay in the room with the door closed and not to open it until James’ dad had left the floor. I was terrified while I listened to scuffling and swearing in the hallway, booms and bangs as they bumped into each other and the walls as they fought their way down the hall and through the double doors off the floor. Moments later I could hear James’ birth dad shouting in the parking lot two floors down outside our window. He was not allowed back on hospital grounds. Shaking and sad, we held our boy closer and prepared for the next challenge: The NICU.
James had fantastic care throughout withdrawal. This hospital was thankfully using a non-pharmacologic method of helping opioid-exposed babies withdraw, called Eat, Sleep, Console. The NICU pediatrician put a prescription for Morphine in place in case it was needed, but the goal was to support James with NG tube feedings (and bottle feeds if he was able), encourage him to sleep as much as possible (keeping lights low, playing quiet music and white noise), and consoling and holding him skin-to-skin as much as possible. It was the honor of my life to get to support him in each of these ways.
James needed three different types of creams applied to his bottom at each diaper change. As drugs left his system, they created raw open sores. It was absolutely heartbreaking to change his diaper as he wailed and screamed in misery. Feedings were frustrating and sad, too. We learned that opioid-exposed babies often have a, “lazy suck,” and he also had a tongue tie. He had very little interest in eating. We’d attempt to give him whatever we could from a bottle, and once he’d taken 30-45 min just to drink half an ounce, the nursing staff would help us feed him the remainder of the bottle through his NG tube.
A few days later when James’ fevers became less frequent and he was scoring consistently lower on the Finnegan NAS (Neonatal Abstinence Syndrome) Scoring System that the nurses used, we were incredibly relieved. Around this time, James’ birth mom was lucid again and able to leave the hospital. She reunited with James’ birth dad and they relinquished their parental rights a couple of days later. We agreed to meet up with them for coffee before going back to our home state, so they could see him one last time.
After 12 long days, we were allowed to leave the NICU and take James home. He still wasn’t taking in much formula, he only weighed 5 lb, still had tremors in his arms and legs, kept his arms bent and tight against his chest, and had inconsolable crying fits in between short naps. We knew deep down that he still wasn’t well, but we were in love with him and focused on starting our new life together as a family. We met up with James’ birth parents before leaving town and took pictures of them holding him, while they took pictures of us holding him. They expressed their gratefulness for what we were doing for them, and we expressed (as best we could) how grateful we were for what they’d done for us. We hugged and parted ways; I promised to send photos and letters, and we jumped in the car and headed home as a family of 3. The most surreal and wonderful miracle. I held James’ hand in the back seat all 22 hours it took us to get back home. No one tells you ahead of time that you have to stop every 2.5 hours to get the baby out of the car seat for safety reasons, move them around a bit, change their diaper, feed them, etc. It took us twice as long to get back home as it did to get there three weeks prior!
James’ first year of life was incredibly challenging. He suffered from continued withdrawal symptoms for 4 months. We didn’t expect this. No one told us when we left the NICU that we’d continue to see tremors and inconsolability and refusal to eat, and that those sores on his bottom would stick around for awhile. We thought acute withdrawal was…it. Beyond that, he’d be like a typical baby.
We felt like failures at every turn. Not only were we first-time parents, but we couldn’t get our baby to eat and he was unhappy most of the time. He screamed for 20 minutes non-stop before each bowel movement. His bowel movements were loose and acidic. He suffered from horrible gas pain and few things we tried gave him relief. I remember many sunny summer days spent in his nursery with the blackout curtains drawn, lights off, white noise machine blaring and quiet jazz music playing, headphones in my ears to drown out his crying, sweating as I bounced up and down in the middle of his room, out of breath from shh-ing, vigorously patting his bottom. I would move in ballroom dance patterns with my footsteps on the rug, holding my tiny dance partner tightly - dipping and swaying, praying to God through tears that he would miraculously have his pain taken away. That he would eat. That he would grow. That he would thrive.
I felt helpless. I couldn’t find a local pediatrician with any specialization in prenatal drug exposure. How is that not a thing pediatricians get extra certification in? The best I could do was find a NICU pediatrician that was willing to see us and assess James’ progress moving through the after-effects of his prenatal opioid exposure. She assured us he was doing fine and she referred us to our school district’s Early Intervention program. This was extremely helpful, as he had already been seen by a Family Practice physician twice and she had not made that referral for us. I didn’t know we needed it, but it was desperately needed. He began being seen at home every other week by an Early Childhood teacher who had specialized in physical therapy. She helped loosen his tight arms and advised us to keep him swaddled tightly to provide the sensory input his little nervous system and body needed as it endured tremors and other physical pain from lingering withdrawal.
We later found a primary pediatrician who had some experience caring for opioid-exposed babies earlier in her career. I was so grateful for her and she became a support and encourager for us as parents, as well. She taught us about how long drugs take to wash out of your nervous system, even after withdrawal ends. (Did you know nicotine takes up to 5 months to stop influencing your nervous system?!) She also referred us to a pediatric gastroenterologist to help us help James want to eat and grow. The GI doctor put him on reflux medication just to keep his digestive system calm, with the goal of helping him be able to process his formula pain-free. That unfortunately never happened, and he developed a bottle-feeding aversion. Who knew that was a thing! But it is. And it’s horrible.
He had been underweight and diagnosed as Failure to Thrive for most of his first year. We stressed out so much about how much he ate that it turned into us pressuring him too much and that, on top of the pain that digesting food caused him, caused him to develop a fear of eating. We found a strict protocol online that an Australian pediatrician named Rowena Bennett developed for children with Bottle Feeding Aversions, and we had to follow it several times to get him consistently taking in formula again. In the midst of a nation-wide formula shortage, we scrambled to locate and try 6 different baby formulas within his first year. We never found one that seemed to work great for him. We even added banana flavored baby oatmeal and a drop of non-alcoholic vanilla extract to each bottle to mask the vinegary taste of his highly hydrolyzed formulas. He drank a little more when we did that, but never enough to gain at the rate he should have been. There are few things more stressful for a parent than not being able to get their child to eat and grow.
We began visiting the feeding clinic at our local children’s hospital when James was about 7 months old. He’d been trying some baby food purees and soft foods like bananas for a few months. He liked some of them and this was very exciting for us! He got on the growth chart finally and established his own growth trajectory! We happily left baby formula behind when he turned one.
Throughout James’ first year, I’d look around at other people with babies and think, “What’s that like?” I didn’t know what it was like to get to go to the store and browse the aisles with my baby, because my son screamed and hyperventilated every time he was in his car seat. I didn’t know what it was like to walk more than a block or two past my house with my baby in his stroller without him screaming and falling apart and having to turn around and go back home. I didn’t know what it was like to have friends hold my baby and not feel like I had to come up with an excuse to explain his tremors (while protecting his birth story). I didn’t know what it was like to have a baby who just drank their bottle without issue and gained weight normally. I didn’t know what it was like to go on a family date to a restaurant because our son would be screaming inconsolably the entire time. We really rarely left the house, except to go to doctor’s appointments, during James’ first year. It was isolating and lonely and although I was in love with James and adored being his mom, it was one of the hardest years of my life.
Getting through the first year felt like we’d won the Olympics. We’d earned some kind of parenting gold medal. I felt relieved and amazed. But I’ve learned that with each victory, new challenges will soon arise. Every parent needs endurance - but parents of opioid-exposed kids really need a lot of endurance!
James is 2.5 now. He is still seen by Early Intervention teachers every two weeks, and we go to Speech Therapy and Occupational/Feeding Therapy every week. He has a speech delay and uses an AAC device to communicate along with ASL signs and the few words he can verbalize. His speech delay has resulted in a lot of frustration and overwhelm for him, and he expresses this by banging his head on hard surfaces like the floor, or his mom and dad. We sometimes use a padded helmet for him when he has a bad head-banging day. It breaks our hearts when he gets bruises on his forehead from head-banging and to witness him hurting himself.
He was diagnosed with Astigmatism and Nystagmus earlier this year and wears glasses now. We’ve learned through this experience that many opioid-exposed children end up having visual impairment issues. We did further testing to rule out other causes of his Nystagmus and have confirmed it is due to his prenatal opioid-exposure. His eyes will be examined every 3 months going forward and he may need surgery eventually to correct the condition.
He is still an incredibly picky eater and prefers his “safe” foods, which are primarily packaged, predictable, and processed. He didn’t begin walking independently until 2 weeks before his 2nd birthday. He has low muscle tone and works hard as he attempts to get stronger and learn to climb, run, and play at his age level.
But he’s also incredibly HAPPY. He is silly. He is energetic and enthusiastic. He is loving. He is empathetic and affectionate. Gone are the days of inconsolable crying. Sure, they’ve been replaced by BIG emotions, but also a beautiful capacity to experience the fullness of life at maximum volume. He has to struggle far more than we want him to have to. But we know that with continued supports - he’s going places! The struggles are there each day - but they are in the background. They aren’t the center of his story — his joy and resilience are. He is a glowing light. He is thriving and we are so proud of him.