Oh my girl. How are you already 3 years old today?? How did time fly so fast?? Everyone said it  would but I didn’t believe them.  I remember going into labor with you on the 19th and being so nervous and excited to meet you. I couldn’t wait to see what you looked like. After almost 24 hours of labor and birthing you without an epidural or drugs, you came out looking like your daddy. But I’ve forgiven you for that. 😉 He’s a pretty amazing person to look like. When they laid you on my chest you were crying and I told you it that it  was okay. I told you that everything was going to be alright. As the hours and days unfolded our roles reversed in a way and it was you and your strong, beautiful spirit that reminded me it was okay. When the doctor said they wanted to do a chromosome test to see if you had Down Syndrome, I thought my life was over. I was so ignorant. Little did I know that life was just beginning! You’ve given me new eyes, Adalene. You’ve awakened a part of me that I never even knew existed. You have shown me true beauty from the inside out. You embody joy and love. You brighten every room and every face and heart in that room. You’ve even made someone who hates kids absolutely adore you! You live every minute to its fullest and experience the moment then and there with no fear of the future. I want to be more like you, Ada. You’re strong and courageous, beautiful, smart, lovely, joyful, kind, silly, musical, hysterical, creative, snuggly, compassionate, empathetic, heroic, brave, fearless, faithful, a heart warrior, a big dreamer, a dancing queen, a go-getter, a shining light, a safe place, a beautiful soul, my hero- my daughter, Adalene Joy. You’ve made me want to be a better person. You’ve helped me see what’s important in life and then to focus on those things. You’ve helped me to live in the moment and not worry about things I can’t change. In your own way, you’ve pointed me to Jesus and brought me to my knees. You’ve brightened moments of despair and worry and frustration. All you have to do is look at me and show me that big, beautiful smile and my world is okay again. You’ve helped me learn the beauty of perseverance and hard work. That some things are worth fighting for and the reward of accomplishing it is worth it . You’ve worked harder than most people three times your age to crawl and walk and talk and learn every day. I’m so so so proud of you! You’ve brought me joy beyond measure. You daily live up to and fulfill your middle name, Joy. Having you has given me a better understanding of God’s love for us. I can better understand now why God would continue to love me and cover me in grace because that’s how I feel toward you. I thank God every day that He chose me to be your mama. What an honor. What a privilege! How did I get so blessed?? He chose me for you and you for me, Bubba. And I’ll forever be in awe and wonder of you and God’s gift. Thank you for being mine. Thank you for being my girl who loves unconditionally and spreads the love and light of Christ wherever you go. I love you so much, sweet girl. XOXO

All my love,  Mama

I remember opening the door to our apartment and all three of us walking inside together for the first time as a family. It was the best feeling in the world! It was also kind of scary and intimidating at the same time. We’d been taking care of Adalene in a hospital with the help of nurses and doctors around the clock. As much as we didn’t want to be in the hospital, we couldn’t deny that the help was nice. So coming home and realizing that we were it was sobering. Thank God for my amazing mom who was still in town and helping us! She was staying at an airbnb just a few minutes away.

We continued our same routine at home that we had established in the hospital. Every three hours we’d change her diaper, I’d breast feed for about 30 minutes (if she would eat), then we’d feed her my previously pumped milk through her NG tube, I’d pump for 20 minutes, then we’d have play time, and then she’d fall back asleep. I’d usually have about an hour or so before starting the process over again. At her first doctor visit we discovered that Adalene’s pediatrician had a daughter with Down Syndrome too! He was such an encouragement and help to us in those first few weeks. We also discovered that Ada’s jaundice was not improving so her pediatrician prescribed to have a bili-blanket delivered to our home. We had to have her wrapped in the blanket any time we were not holding her. It  was really annoying. But we were thankful to have something at home to help her.

Those days at home in our little apartment are still a blur. I remember feeling happy, sad, exhausted, proud, angry. I was overwhelmed but so happy to have our girl home. But I still hadn’t processed anything that had happened. I was in survivor mode still, moving from one minute to the next just trying to keep above water.

About a week after we brought Adalene home, Ryan got the call from the Costco Warehouse manager that he had gotten the job to help open the new store in Charlottesville. A huge reason why Ryan got the transfer was because of Adalene’s heart condition. We knew that she would maybe need heart surgery if the holes didn’t close up. So Ryan made it  known to Corporate and that gave us an open door (that and God’s providence).  We were so excited to finally hear back and be able to start planning our future. Before the call, we had no idea if we were staying in Indiana or moving to Virginia or what the heck we were doing. My parent’s plans all depended on this too. They wanted to retire to Virginia but only if we would be there too. So Ryan got the call we started to plan.

Ryan did pretty much all of the planning for our move. He’s really great with that kind of stuff. We decided to have Adalene and I move out first so we could avoid the chaos of packing and living in a packed up apartment with an infant. My mom offered to fly out (she had gone home to CA by this point) and drive with Adalene and I. So six weeks after Adalene was born and 4 weeks after we’d been home from the NICU, we began another journey. We moved to Virginia. It  was about a twelve hour drive and Mom drove the whole way so I could pump and feed Adalene in the car. It was actually nice that Adalene was still so young because she basically slept the whole way.

Mom and I arrived in Virginia at “Cordyland” on June 9, 2015, the day before my mom’s 60th birthday. Our dear friends, the Cordy’s, offered to host us for the couple weeks before Ryan moved out with all of our stuff.

I can’t fully describe all the emotions involved in those few weeks. So many things were changing. Everything was changing. My entire life looked differently than it  had just a few short weeks earlier. Even my mom turning 60 and celebrating her birthday in a new place away from dad and Ryan was weird. I felt completely out of control. In every aspect of life, I was powerless. I couldn’t control the fact that my daughter was born with Down Syndrome or the possibility that she may need heart surgery. I couldn’t control that I didn’t have a home to call my own. I was living out of a suitcase in someone else’s house with a tiny newborn and away from my husband and family. I couldn’t control where we would live after Ryan arrived or how often I would even see Ryan. Opening a new Costco warehouse is a lot of work and I knew from our experience in Indiana that he would be busy and stressed. And I would be in a new place without my family or friends. I couldn’t control the fact that my milk supply was decreasing and causing me stress or the fact that I was gaining weight instead of losing it . All of these factors played on my heart. But it ’s like I didn’t even know I felt that way. I was still in survivor mode, living minute to minute and trying to keep my daughter healthy and safe. With all the chaos and things I couldn’t control, I could control one thing- my hair. I’ve always had long, thick hair. It ’s one of my favorite things about my looks and I get complimented on it  regularly.  But a week after we arrived in Virginia, I chopped it  all off. I had this nagging urge to cut it  for days and felt like if I didn’t cut it  then I’d explode. I just had to cut it off . So I did. The hair stylist asked me if I was sure and I said yes. She cut it  to my shoulders and I liked it – for a few days. Then I wondered what the heck I was thinking to cut off all my hair! I realized several months later what was going on and that it  was my way of controlling something when everything else what out of control. Looking back though, I can see God’s hand and guidance. He was in control and was making a way for me to find healing even when I thought He wasn’t.

On April 29th, 2015 we got the news we’d been dreaming about since we arrived nine days earlier in the NICU. We could go home!!! The pediatrician on Adalene’s case came up to me while I was walking in for Adalene’s 8am feeding and asked if we wanted to go home that day. I said, “Yes, we are ready” with the biggest smile on my face. I couldn’t wait to tell Ryan! I don’t remember if it was that conversation or a conversation the day before, but on one of the last days in the NICU the doctor told us that the results came back and that Adalene tested positive for Down Syndrome. The doctor told Ryan and I separately which I wish he hadn’t. But I wasn’t surprised by the results because I knew in my heart that my little girl had Down Syndrome. It was nice to get the official diagnosis though.

Before we left the NICU a woman who had a daughter with Down Syndrome met with Ryan and I. We sat on the couches in the waiting room of the NICU and talked to her for probably 45 minutes about all kinds of things. She told us that her daughter was in her 20’s and living independently in Chicago where she had a full time job. I was completely taken aback by this. I thought people with Down Syndrome were unable to have jobs and live independently! She told us how hard it was at first because of the shock and society’s perception of people with Down Syndrome. But then she said after you get past that, it’s really not much different from raising a typical person without Down Syndrome. Adalene would have her own struggles and strengths, dreams and gifts, just like anyone else. She’ll learn and grow and have her own personality just like her peers. She just may take a little longer in some areas. She’ll take the scenic route, I like to say. My weary heart found so much comfort in what this woman said. She talked as if it wasn’t a big deal at all that Adalene had Down Syndrome. My life was shattered just a few days before with the news that our baby had Down Syndrome and I thought my life would never look the same. I thought my life was over. I thought that all my hopes and dreams were forever lost because I was given a baby with special needs. I didn’t think it’d be possible to have a normal life ever again. But here’s this lady sitting across from us who, just twenty something years earlier, was in my same position. But look at her now, working and living her life and dreams all while her daughter with Down Syndrome lived her own successful life and dreams. It really was a shock, but a good shock to hear how well people with Down Syndrome can do in life. She said it was up to us. We would be Adalene’s greatest encouragers, her greatest advocates, her greatest teachers. Decades ago, parents would just put their kids in facilities because they just figured they couldn’t learn much. They had no idea what their kids were capable of.  It’s not until recently in the last few decades that kids are getting the help and therapies they need early on so they can have the best future. So she told us to fight for Adalene and to never underestimate her. She said to dream big for Adalene and never allow her or us to think she couldn’t do something.  I’ve remembered that and try to follow her advice every day.

We left that conversation with a new sense of hope for the future. Things were starting to look up for our little family.

We had conditions to be able to leave the hospital.  Ryan and I both had to be taught how to insert Adalene’s NG (Nasogastric Intubation) tube. Adalene was still breast feeding but didn’t get enough since she was weak so the NG tube was how she received the majority of her milk. There’s no way we could go home with her needing the NG tube and not know how to insert it . Ryan and I don’t have the strongest stomachs when it comes to blood and medical procedures. There’s no way either one of us could ever be a doctor or nurse (hats off to those people!). But we had to suck it up and learn how to insert the tiny tube up Adalene’s nose and into her stomach for us to go home so that’s what we did. Having to hold your infant down while you insert something into her nose that makes her scream and gag is probably one of the worst things. Then we were given a stethoscope to listen to her lungs and stomach to make sure the tube was going to the right place. If it went down the wrong tube and into her lungs then she could basically drown. So we had to make sure it went to the right place which was obviously into her stomach. After some practice, we both were able to successfully insert the NG tube for Adalene. There was something else that we needed to keep an eye on- jaundice. She had been under the blue light for most of her stay in the NICU and while her jaundice was getting better, it still wasn’t gone. So we understood that we could potentially have to have a home treatment.

There were other details and legal procedures we had to go through before we left but it’s all a blur. We just couldn’t wait to get home! So on the evening of April 29th, we busted out of that NICU in South Bend, IN with a spring in our step. We just couldn’t wait to experience life with our baby girl outside of the hospital walls!

Several weeks before Adalene was born, we found out that a new Costco Warehouse was going to be opening up in Charlottesville, VA. It had been our desire to move closer to family for awhile and since there’s little to no Costco movement in California (and since the cost of living is outrageous), we decided to push toward Virginia. I had visited Virginia several times and thought it was beautiful and I especially loved all the history and wineries. Ryan’s family are mostly in or around Culpeper which is only an hour north of Charlottesville. So when we got the news that a new warehouse was going to be opening in C-ville, we jumped at the possibility of moving. We’d only been in Indiana for a few months but we knew that it wasn’t our forever home. So Ryan adjusted his resume and filled out all the paperwork required and sent it to Virginia. At the same time, my parents had been seriously considering retiring on the East coast. They also liked Virginia and were thinking about going to Charlottesville as well if we got the transfer. My mom’s mom (Grandma Grape, we lovingly call her) would be needing to be closer to immediate family as well since she was getting older and needed more assistance. So mom and dad wanted to be able to bring her along.

Once Ryan sent in the paperwork all there was to do was wait and pray. We wanted to go to Virginia so badly, but we didn’t want to get our hopes up too high in case he didn’t get the transfer. We waited and waited. We thought for sure we would hear back before the baby was born. But Ryan never got the call.  All of our lives and future hung on one person’s decision in Virginia whom we’d never met. My parents were flying back and forth looking at houses outside of Charlottesville and we were waiting and wondering if we needed to be looking at bigger apartments in Indiana since we only had a one bedroom or if we should be applying for apartments in Charlottesville. There were so many questions with no answers. We waited for weeks, even though it felt like months.

Then finally, one day in the NICU Ryan got a call from an unknown number. Adalene had just been born and we were living in the NICU with her- it was the worst timing! But Ryan had to put all the heartache and emotion aside and focus on the interview. He talked with the Warehouse manager in Charlottesville while he was at the hospital. Ryan interviews very well so I had no concerns about that, other than the fact that we were in the NICU with our newborn. He hung up the phone and came into the corner room where I was holding Adalene and told me that the interview went well. He said he was one of the first people to be interviewed and it would be several days before we would hear back. More waiting.

I tried to not think about it. I wanted to just be focused on what was in front of me which was taking care of Adalene. I couldn’t control the future and worrying about what was going to happen wouldn’t change anything. So I chose to give it to the Lord. Every day I would lay it down and trust that He would open the door for Charlottesville if that’s where we were meant to go. To be honest, though, I wasn’t sure where my relationship was with God at the time. I knew He was good and that I loved Him and He loved me, but I felt like He had somehow messed up by giving me a daughter who probably had Down Syndrome (we still didn’t know for sure- still waiting on that too!). I wasn’t mad at Him. I wasn’t turning my back on Him. I was just wondering why. I felt like we were on such good terms with each other. I was a good kid growing up and never did anything completely stupid. I had a good relationship with  my parents and family.  I was a missionary for three years, and then married a good, Godly man. I had done everything right. So why was this happening?? Honestly, I felt like I had been sucker punched by God. Like everything was going well in life and then WHAM! sucker punched! I was just confused about the whole thing. I constantly asked God why and then would immediately feel guilty after because I loved my daughter and didn’t want to sound like I was ungrateful or didn’t love her. I just didn’t get it.

I remember one day in the NICU I was sitting on the bed and asking God why again. I’d been crying for days and I just wanted to know why God had given me a “damaged” baby (I hate using that word but it’s how I felt at the time). Suddenly, I felt a smooth, warm peace come over me, like Jesus had walked into the room and was sitting there next to me. I felt His presence and His words wash over me like warm water.  He told me that He’d chosen me for this “privilege”. He had hand picked me to be Adalene’s mom and had been preparing and equipping me for years and I was able and ready.  Life would only be fuller and more joyful from here on. He would strengthen me but there was no reason to fear. He was good and sovereign even still.  I let the words and the peace of the moment sink into my heart and soul. It was going to be okay. God was with me. He wouldn’t leave me or forsake me, but has been equipping me all along. I cried but this time the tears were tears of joy and gratitude. No matter what was to come, I knew everything would be okay because the God of the universe was with me.

I had a conversation the other day with my music/worship leader and mentor. We talked about how far I’ve come since he met me and since we started meeting. He said I was timid and unsure of myself when we first met. I was very much inside my head.  I’ve come so far. The person that sat depressed yet joyful in the NICU with her newborn is not the same person today. Living day to day, you don’t realize the change as much. But looking back over months and even years now, I know I’ve changed. How could you not change? When your life is altered and shaken at its core, you are shaken with it. The foundation of who you are is shattered. But I’m seeing now that all the shattered pieces of who I was has miraculously come together again, with some new pieces, and has re-formed a new, fierce, beautiful person that I’m now starting to recognize in the mirror. (Because there were days when I didn’t recognize myself at all).

 

I realize now that having to pump breast milk for Adalene was my saving grace. It kept my mind and body on a schedule with something intentional to do when I felt so helpless. Every day in the NICU was the same. I’d get up and try to breast feed and then pump while Ryan or my mom or a nurse would tube feed Adalene. I clearly remember the details of our schedule day to day, but the days themselves are a blur. Every 12 hours we had a new nurse and I remember thinking how weird it was to be updating another woman on how to take care of my baby. These women had their own lives outside of the four walls surrounding us, but my whole life was summed up within those same four walls. It felt unnatural to have someone else that I didn’t know taking care of Adalene. I know they were trained for that and it was their job, but it still felt weird to me. I had to remind myself that life outside of the NICU still went on. My whole world had come to a scary and abrupt halt so I just figured everyone else’s had too. But that’s not how the world works and trauma is no respecter of persons.

Half way through our stay, Adalene got moved to her own semi-private corner in the NICU. It was a good sign and it was one step further to being able to leave. It gave me more privacy to breast feed and pump too. Adalene’s oxygen levels and jaundice were our main concern by that point. The holes in her heart didn’t seem to be of much concern to the doctor so we just let it be and focused on the things that were keeping her in the hospital. She wasn’t gaining much weight either. I know it’s natural and normal for a baby to lose weight initially right after their born. Adalene had done that and then plateaued and just wasn’t gaining. This concerned the doctors because a heart condition can cause the body to over work and therefore, not gain weight. Every day we held our breath when the nurse would weigh her in the morning. Some mornings she has lost weight and other mornings she would stay about the same. So we continued to pray and do what we knew to do to help her gain weight. I would day dream about the day when the doctor would come in and say that we could take Adalene home. My heart ached for that. I couldn’t wait to take her home and show her our own place where there were no doctors or nurses or tubes or beeping machines. I wanted to have my own routine with her at home that didn’t depend on a hospital’s schedule or get interrupted by well intentioned people. I knew it would happen though. That’s what gave me hope- knowing that we wouldn’t be there forever and someday (hopefully sooner than later) we would be taking our little girl home.

I can remember our time in the NICU so clearly. It was the most present I’d ever been because I lived minute to minute there. I couldn’t see beyond tomorrow or past the walls around me. I didn’t think about the next hour or the next day or next week or month. Time and the future didn’t even cross my mind. I was solely in survivor mode, living second to second, minute to minute. I remember someone telling me that it wouldn’t be this way forever and I didn’t fully understand them or believe them. I was just living in the moment and doing what I needed to do. I had to take care of my daughter and give her the best of me in every way. It wasn’t a question at all. I didn’t think of it as having a choice. Because I really didn’t have a choice. What else would I be doing at that moment in time but loving and caring for this tiny human that literally just came forth from my own body?? Everything within me focused on her and was for her. I was completely unaware of myself. When I did stop to think about me, I just felt gross. I wouldn’t shower for days since I had to go home to do that. Some days I would forget to brush my teeth. I hardly ate so the nurses had to keep telling Ryan to make me eat. My ankles were huge, at least twice their normal size. I wore sweats all the time and had this weird post pregnancy belly that was really squishy. It was the most unattractive and gross I’ve ever felt in my life. But I barely noticed any of that at all. What I looked like and how I felt was the least of my worries. Ryan and I just wanted to go home. We would sit and talk about the day when we could bring Adalene home and get really excited about it. What would that even feel like?? To be home with our daughter as a family of three, free of cords and tubes and blue lights and doctors and nurses and beeping machines?? We couldn’t wait!

The NICU had a three hour rotation schedule with a new nurse changing every twelve hours. I was breast feeding and pumping every 3 hours, 8 times a day (skipping the 2am feeding to sleep).  At the top of the beginning of the first hour we would go in and try to wake Adalene up by changing her diaper. This in itself was a task since she had so many tubes and cords connected to her and it was easy to rip them off or get them tangled. Once we changed her, I would get set up with a rocking chair and pillows so I could breast feed. She latched on fine but was so tired and weak from everything that she wouldn’t get much milk. After breast feeding, Ryan, my mom, or I would hold her so we could attach a syringe to the NG tube and feed her my warmed up breast milk. The tube was long and went into her nose and down directly into her stomach. While that was going on, I’d pump for about 30 minutes so she’d have enough milk for the next NG tube feeding. My supply wasn’t great, but it was enough for her to not have to get formula again in the NICU so I was thankful. By the time we were done with this process, we’d have about 45 minutes to an hour until it needed to start all over again. I usually would try to eat something or lay down for a quick nap before starting over.

During the day, my mom would come visit and Ryan would occasionaly take some time to get away. Sometimes he would go home and take a shower and grab things that we needed from the apartment. Some days he would just drive and try to process it all.  I was glad that he got that time away to let it all sink in. We didn’t know how to feel or process it all. We were happy but grieving; joyful but scared; proud but angry. Anger is an emotion that came shortly after the excitement of it all wore off and we began to realize what was happening. Now I know it’s a natural process that people go through when something bad or traumatic happens. We were grieving and angry. I was constantly crying. The sting of tears were always in my eyes during that time. I’ve always been more reserved with my tears around people, but I couldn’t care less there. I felt completely stripped of dignity and unashamedly vulnerable. Ryan cried too. But most of the time he was strong for me. And he was still holding onto the hope that Adalene didn’t have Down Syndrome. We still hadn’t received her official diagnosis since it took several days to hear back. So Ryan kept hoping that it wasn’t true. But I knew. I just had this “knowing” feeling that she did have Down Syndrome and I was trying to be okay with it. The only time I wasn’t crying or on the verge of tears was when I was with Adalene. She brought me so much joy.  I remember missing her the second I would leave her. I would get so excited every time I came back into the NICU to see her. She was the only light during that time. Holding her made everything feel like it was going to be okay.

On the first or second day they had to do a blood draw on Adalene so they could send it in for the chromosome test.  Ryan and my mom weren’t there so it was just me and a couple nurses. They took the needle and had to keep poking her arm to find a vein. Her arms were so chunky that they couldn’t get the blood draw. Adalene was screaming and crying the whole time. I just stood by her, sobbing. Watching my little girl in that much pain was almost unbearable. Thinking about it even now makes me cry.

I wanted to snuggle Adalene without all the crap so badly!  A new mom should be able to do that! I was jealous of moms who could just snuggle their newborns without having to think about messing up a tube or tangling a cord. What would that even feel like? Because Adalene also had jaundice, she had to be under the blue light as much as possible. She had to wear little goggles to protect her eyes from the light. So we’d put the goggles on and then just have to leave her there under the light. It was horrible. I was angry at what we were being deprived of as new parents. These were the very first few days of parenthood with our little girl and we would never get those first moments back!

We had to wear badges so we could be identified as Adalene’s parents. We had to have a key to get into the NICU due to security reasons. If we didn’t have our key, we would need to get beeped in.  We even had a pin pad on the door into our room. I remember the sinks stationed at the entrance of the NICU. People were required to wash their hands every time they entered. There were so many rules and regulations. I know they were for security or sanitary purposes but they were still annoying. I didn’t want to have to get beeped in or washed up to see my daughter.

I remember one morning on the fifth or sixth day where I just couldn’t get up out of bed.  I needed to get in to feed Adalene by 5am but I just sat on the edge of the bed and cried. I felt depleted of all energy and strength. I was also sad. Depression and weakness wrapped around me like a heavy blanket. I woke Ryan up who was asleep next to me and told him that I just couldn’t do it. I needed him to help me up and walk me into the NICU where Adalene was so I could feed her and then pump. He said okay and got up with me. I’m so thankful he did- I don’t what I would’ve done without him.

I can still hear the beeping monitors above Adalene’s hospital crib. There was a green light that beeped whenever her oxygen levels dropped below a certain number. We hated that thing. It just reminded us that we were that much further away from going home. As long as that light was blinking and beeping, we couldn’t go home.

No one knew what was going on with Adalene except our family and a few people at our jobs. We didn’t tell anyone because we honestly didn’t know what to say. I remember people kept calling and texting me and I couldn’t respond to any of it. There were no words. There was no strength left. A few days into our stay at the NICU, though, my best friend called and I answered. I tried telling her what was going on but my words would get stuck in my throat. I tried to tell her about the chromosome test but as soon as I tried to say the words, I completely fell apart. I just sobbed. Then I handed the phone to Ryan because I couldn’t stop crying. With a shaky voice, he told her what was going on. He was so strong. To this day, I’m amazed at how solid he was for me and for Adalene. He was hurting too, but he was able to keep it together so I could fall a part. And the times when he needed to fall apart, I was able to be strong. Looking back, it was actually really beautiful. And God gave us each the grace we needed in that moment to hold onto each other.

Sorry it’s been awhile since I’ve written. It’s been awhile because 1) I got super busy, 2) I don’t remember a lot of things from that time in the NICU, and 3) what I do remember, I don’t want to remember. But actually, by God’s grace, this post has turned into one of my favorites so far. Enjoy!

 

We arrived at the hospital in the evening I think and found where the NICU was located. We walked in and saw dozens of tiny babies in incubators, hooked up to tubes and cords. It was awful. They took us to where Adalene was set up. She didn’t have her own room, just an incubator with her own machine in a few square feet of space. She had an oxygen mask on and cords hooked up to every part of her body. She looked so small and helpless.

The NICU Pediatrician had already left by the time we got to the hospital. We didn’t know what was going on exactly. A nurse told me that the pediatrician would be calling the NICU to talk to us that evening to update us on Adalene. Ryan went back home to grab some clothes and things to spend the night. While he was gone, the doctor called and updated me on Adalene’s condition. He told me that Adalene’s ECHO had revealed two holes in her heart, an ASD and a VSD and that she would be in the hospital for the next 10-14 days. I stood there on the phone at the nurse’s station, hearing what he said, but not fully processing or understanding what he was saying. I just kept saying “Okay” to everything he said until he was done talking and then we hung up. My mom was there and asked what the doctor said. I told her what the doctor said and I remember her eyes getting really big as if I had just given her bad news. But I didn’t understand what was happening so I just reiterated the doctor’s words like a parrot and watched my mom’s face turn in shock and horror. It’s hard to explain how I felt. I was numb and detached from what was happening.

They put an NG tube down Adalene’s nose and into her stomach so she could be fed. My milk hadn’t come in yet so they had to give her formula which was the last thing I wanted for my newborn. We tried to make them wait so we could at least give her organic formula but they fed her anyway. I felt out of control. The exact opposite of everything I envisioned was happening and I couldn’t stop it or control it.

There were “parent rooms” located just outside of the NICU that we were able to stay the night in. I call it a cell because it was a tiny room with an attached tiny bathroom with just a sink and a toilet. The room had no windows or natural light and just one pull out sofa bed that pretty much took up the entire room. But that was our home for the next several nights but we were just thankful to be able to be close to our little girl.

I remember Ryan and I talking about how much we loved Adalene. It was a kind of love we had never experienced before. It was a pure, unselfish, unwavering, deep kind of love that came up from the core of who we were. We would do anything for her- no questions asked. We talked about how it was so beautiful- Adalene had not done one single thing to deserve or win our love. If anything, her coming into the world had thrown us into a whirlwind of craziness, but we loved her so incredibly much and wanted so badly to take away the pain and the cords and tubes and scariness of what was happening. We wanted to protect her and would do anything to make her alright. This new kind of pure, unadulterated love changed us in an instant. And then I realized that this kind of love must be a shadow or a hint of God’s love for us. We didn’t do a single thing to deserve God’s love. Not one thing. If anything, we had rejected his love and turned our backs on him and flung ourselves into the arms of other “kings”.  We exchanged out Glory for grass (Ps. 106:20). And what was God’s response to our rejection? Love. Grace. Forgiveness. Sacrifice. Holy Pursuit. Romans 5:6-8 “You see, at just the right time, when we were still powerless, Christ died for the ungodly. Very rarely will anyone die for a righteous man, though for a good man someone might possibly dare to die. But God demonstrates his own love for us in this: While we were still sinners, Christ died for us.” This verse made more sense to me that day. And while I was in my own sorrow, watching my world crash in around me, I knew God’s love would be enough. He wouldn’t leave me just like we wouldn’t leave our little Adalene Joy.

I talked to my mom a couple nights ago and she told me some things that happened that I don’t remember. I guess the doctor wanted us to stay another night at the hospital and then the next day he told us about the jaundice and low oxygen. I don’t remember staying another night but we did. The next day is when we were given the option of choosing to have her transferred to a closer hospital for the ECHO or a further hospital with a NICU.

The hospital’s protocol is to have the family watch safety videos before leaving so I remember having to sit through that the next day. Also, my friends from work came to visit and meet Adalene.  I remember my lactation consultant at the hospital coming up to me and just hugging me. It took everything in me not to completely fall apart in her arms.

I hadn’t cried though. I just was holding everything inside and trying to be strong. Honestly, I didn’t know how to feel. My emotions and heart were all over the place. I was so happy to have my baby in my arms. I’d waited nine months to hold her and she was finally here. My heart was overflowing. But at the same time, my heart was breaking. My baby had a heart murmur and needed medical help. She possibly had Down Syndrome. I wanted to scream and cry and laugh and dance all at the same time. I’ve never been so emotionally torn in so many directions.

Later that day the paramedics came to take Adalene. I wanted to go with her, but I couldn’t for some reason- I don’t know why. My mom says that I asked to go with her, but they said no. I just said okay. That doesn’t sound like me, though. I would’ve fought to go with her, but I think by this time I was in shock. I felt like I was floating from one minute to the next, almost detached from my body and what was going on around me. Adalene had to be transferred in what I call a “plastic coffin”. That’s what it looked like to me and I hated that she had to go in it. The technical word for it is an incubator. Adalene was put in the incubator and we stood by to say bye before they took her away in the ambulance. I stood there, wide eyed and stoic, unable to comprehend what was happening. The paramedics were very patient with us as we said our goodbyes for a bit and then they wheeled Adalene away. I wanted to scream. I wanted to run after them and tell them they couldn’t take her. I wanted to hold her close and never let her go. But I just stood there, unable to move, trying to hold myself together. Ryan and I gathered our things from the hospital room and I was discharged. We were given a map to follow of where Adalene had been taken in South Bend which was about 45 minutes from the hospital we were in. But the new hospital she was going to was only about ten minutes from where we lived so that was a blessing.

We left the hospital and walked to our car in a daze. It is the most heart wrenching, sickening, unbearable pain to arrive at a hospital in labor and excited to bring home your baby, and then leave empty handed. My arms should’ve been carrying out our baby girl, but instead they were empty. I couldn’t handle it anymore. As soon as we got in the car I broke down. I cried and cried. Ryan just held me close and let me cry. He was so strong. He told me later that he wanted to cry too but was trying to be strong for me. I cried pretty much the whole way to the hospital where Adalene was in South Bend.

The doctor came in….

I didn’t know this doctor but I think he was the one at the birth with my midwife. I thought he was coming in to tell us that we had been discharged and we could go. Looking back, though, I remember how the nurses kept avoiding our questions of when exactly we could go. We were getting frustrated that they wanted us to stay for 24 hours (their protocol) because our 24 hour mark was at two in the morning and we weren’t going to get up and leave then!  So the doctor came in and started talking. Then he said, “Okay, don’t freak out about what I’m going to say, but we want to do a genetics test. Your daughter is showing some signs of Down Syndrome.” Immediately, I felt the blood slowly rush down out of my face and my whole body went ice cold. I’m sure I looked white as a ghost. I couldn’t move or think. I couldn’t respond because I was trying to process what exactly he had just said. What did he say? This wasn’t right. This wasn’t happening to me. My daughter was perfect. She didn’t have Down Syndrome, did she?? So many questions filled my mind as I began to process. What was Down Syndrome anyway? Did I cause it? Did I do something wrong during my pregnancy? Was this my fault? I couldn’t live with that! What kind of life would Adalene have? What kind of life would we have? I sat there in the bed completely still. I was frozen with fear and unbelief. Ryan started talking and asking the doctor things but I didn’t listen at all to what was being said. I was in my own frozen world trying to make sense of it all. I wanted to run. I needed to leave, to get away, to leave the hospital, leave the state. I just wanted to run and never look back. A plan started to form in my mind of how I could escape and start over in another life. I didn’t want a daughter with Down Syndrome. I hadn’t signed up for that. I thought my life was over. I just wanted to run. But then I thought of my husband, Ryan. I loved him so much and I would never be happy or whole apart from him. I didn’t want to leave him. Living life without him was more scary than the unknown of living life with a daughter with Down Syndrome. So I stayed. I rejected my plan of escape and became present again in the room where the doctor and Ryan were talking. Ryan was saying something about how all the people on his side of the family are born with really squinty eyes so clearly, Adalene didn’t have Down Syndrome. Then the doctor told us that she had a heart murmur, low oxygen, and jaundice and they needed to do a heart ECHO at another hospital.

My world continued to crash in around me. I just couldn’t believe what was happening. The doctor said that we had two options: 1) Have her transferred to a neighboring hospital that could do the ECHO but didn’t have a NICU to treat her. So if there was a heart problem and she needed to stay in the hospital then she’d need to be transferred again to a hospital in South Bend which was 45 minutes away (also where we lived). OR 2) We could have her transferred to the farther hospital in South Bend first where they could do the ECHO and then treat her if she needed it. We chose option two because we would rather have one long transfer than the possibility of two transfers.

This next part is very fuzzy- I don’t remember the order of things that happened or what exactly happened for the rest of that day. I do remember my mom being there with us in the room when the doctor came in with the news. I was so thankful she was there. She told me that people with Down Syndrome are very loving and happy and it was going to be okay.

Ryan didn’t believe the doctor. He kept telling me that he didn’t think she had Down Syndrome because a lot of babies on his side of the family are born with squinty eyes and almost look Asian. He said he was going to ask his grandparents for pictures of him when he was a baby so he could show me. So I stayed hopeful that the doctor was wrong.

(Writing out how I felt then is so different from how I feel now! If I knew then what I know  now, I wouldn’t have been so scared or sad. It’s hard to say that I was hopeful she didn’t have Down Syndrome because I wouldn’t change her for the world now. She’s absolutely perfect just the way God made her. But these thoughts and feelings were real and what I experienced at that time.)

This part of our story is still really hard to write and remember. But I’ll press on because it’s a story worth telling for someone worthy of it.

Ryan and I slept a few hours that night after getting to our room. They had a little bed in the corner for Ryan to sleep on and we kept Adalene in our room right next to my bed. She woke up once crying because of a wet diaper.

The next morning my mom was flying in from California so Ryan left around 9am to go get her. I spent that time alone with my baby girl. I just wanted to snuggle her and memorize everything about her. I just couldn’t get over the fact that she came from me! I thought she was so beautiful and perfect. She looked different than what I imagined but I didn’t care. She was all mine and I knew that I was made to be her mom. For a split second I had the thought that she looked “downsy”. That’s the word that I remember thinking. But the thought that she might actually have Down Syndrome never occurred to me at all. Her looking “downsy” never progressed to my thinking that there may be something wrong or that she was anything but perfect. I hate to even use that word “wrong” now because there’s nothing wrong with her at all. But the person I was during that time is so different than the person I am today. So the thought of her looking “downsy” left just as quickly as it came. Adalene was my sweet girl and she was pure perfection. I just loved those moments we shared together- just her and I.

Ryan and my mom arrived later that morning around noon. I loved being able to introduce my mom to her new granddaughter. We all spent the afternoon together just “oohing and awing” over Adalene. I remember a nurse came in to give Adalene a bath. It was so cute and we recorded the whole thing!

A couple of the midwives came in to check on me and Adalene throughout the day. It was nice to see familiar faces. But Ryan and I were ready to go home. With the birth center, families are sent home only hours after the birth. There’s no over night stay or a 24 hour period where you’re bombarded with nurses and doctors. The protocol is to have home visits for the next couple days, but to be sent home right away. So that’s what Ryan and I were expecting and prepared to do. I already hated that we were in a hospital (although I will say that this hospital treated us very nicely). But we wanted to go home and start our new life with our little girl. We were so excited and couldn’t wait! That’s when the doctor came in…..