Kamdyn's birth story, part 2

Part 1 of Kamdyn's birth story is here.  The following is what I broke off as Part 2.  Honestly, it was hard to go back and read this.  I am finally coming to place where I am beginning to forgive myself for my struggle during those days after Kamdyn was born, but I know it will always be a sensitive area for me.  I have written a birth story for each of my children, so this was something personal that I wrote for myself, probably a year and a half to two years ago.  I stayed mostly true to everything I originally wrote, although I did delete a thing or two that I will keep to myself.  Part of me hesitates to put this out there, because I don't want anyone to doubt my love for Kamdyn now based on my feelings at the time.  If you read this, it's pretty clear that I was severely depressed.  I also don't want to give a negative impression of Down syndrome, because what I felt in those days does not reflect at all on Kamdyn or even what Down syndrome really is.  Most of the things I thought were old, out-dated stereotypes.  I hope that what this will do is possibly help someone who is going through the same emotions.  That they will know that they are not a horrible mother, and they will get through those emotions.  It also shows you that you can really just be a regular person, an average mom, to have a child with special needs.  You don't have to be super mom.  Your child doesn't need a super mom.  They need you.  Just as Kamdyn taught me, your child will teach you.

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I remember the doctor talking about Mongoloid ears and shape of the eyes, but there was no simian crease or folds of skin on the neck. He talked, but I could hardly listen. What does this mean? He ended with, "We're not sure, though. We need to take a blood test to test for sure." Ok, so there's hope. She may not have Down syndrome. It was as if every hope and dream I held rested on whether or not my baby had Down syndrome. It couldn't be true. It just couldn't. They had to be wrong. They said she didn't have all the characteristics. Suddenly, everything I knew was gone. Every security I had felt had suddenly jumped ship, leaving me alone and scared. I can't remember crying. I was just so shocked. Even though I wished they had slipped away during our secret meeting, our pastor friends reentered the room. The looks of shock on our faces must have spoken a thousand words. "They think the baby has Down syndrome," we explained in shock. I had to be strong. I couldn't make them think I didn't have faith, or that I didn't trust God. They tried to offer comfort and spoke kind words, but I couldn't hear them. I was lost in my thoughts. How could I love a child with Down syndrome? How could I love a disabled child? This can't be happening. After they left, I held Kamdyn. I lifted her pink and blue striped hat and looked at her ears. They were different. Mongoloid ears. Her ears were lower on the sides of her head. They were squished and the tops were flat and turned down. Quickly, I covered them back up. It doesn't mean anything I chanted in my head, even though the pangs in my heart told me different. I wanted nothing more than to run away and never think about these moments again, but I knew I couldn’t. And I knew inside me, deep down, that one day I would want to look back at Kamdyn’s first hours and remember. So I decided that I would take pictures of everything. I would take as many as I could. And I did.

Throughout the day, more visitors came and went. And with each visitor, there was a decision to make. Do we tell them or not. We knew we had to tell our parents and close family, even some close friends. Since most of our visitors fell into the category, it felt like that's all we did. Over and over, I was forced to utter the words Down syndrome. And I hated them. Each time I spoke it, it was if the act of saying the words made it more true, and I began to notice more and more things that seemed to indicate that it must be true. Her ears. Her tongue sticking out. And I was ashamed. Was I ashamed of my child? What kind of mother would feel this way? Maybe we shouldn't name her Kamdyn, I thought. I loved that name so much. Maybe we should save it and have another child. One that doesn't have Down syndrome. Kids with Down syndrome don't have cute names. Kids with Down syndrome aren't cute. They are ugly, I thought. And with each harsh thought, I felt more ashamed, more isolated, more devastated. “I should have had my tubes tied,“ I said. “We can’t have anymore children now.“ At that moment, I knew my only reason for wanting to have another child would be to try again and have a normal baby. A re-do baby, but that wasn’t a reason to have a baby. So we had to be done. The visitors flowed in and out all day long. They reassured us. They hugged us. They held Kamdyn. Even so, I wondered how anyone would ever love her. I wasn't even sure how I could love her. How would anyone else. My friend Jodi sat in the sterile-looking blue lounge chair that sat next to my hospital and reached out her arms to hold Kamdyn. She held her so gently. “They think she has Down syndrome,“ I blurted out as the words panged my heart. “Oh, well, she’s just precious. She’s beautiful.“ Those words panged just as much, because I couldn’t say them myself. Her own mother couldn’t even say that. People keep telling me that God gives special kids to special parents, but I’m not special. And if anyone knew what I was thinking, they would know how un-special I really am.

The hospital where Kamdyn was born teaches nursing students from the local community college, so once again, we had nursing students accompanying our nurses. When they examined my abdomen, the nursing student would do it, next her instructor would reexamine, and then my assigned nurse would come and examine again. After one of these exams, our nurse informed us that the doctors had discovered a murmur from Kamdyn's heart. They explained it meant a hole in the heart, but that many of these holes do close on their own. But all I needed to hear was hole in the heart. As the nurse spoke, I put my face in my hands and began to sob. "I just don't want her to be sick," I sobbed. Wasn't it enough that she has Down syndrome. Now she has a hole in her heart. This was not happening. With that news came a thought: She might not make it. She might die. Our wonderful nurse decided that we needed to ditch the extra baggage of nursing students, and she asked them to leave. Calmly she reassured us of the hopeful possibilities of it being a small hole that closed on its own. Hope. It was all we had. And all I could do was hold on. Our nurse encouraged us to take one obstacle at a time. I wanted to, but I just didn't know if I could handle this. Even if this hole in the heart issue turned out to be nothing, what about the Down syndrome? We couldn't overcome that. It would never go away. We would be stuck. It seemed that my new baby was becoming all of these things: Down syndrome, messed up heart, health problem. And with each thing that was added to the list, I saw her less and less. She was a sick baby with Down syndrome, but that wasn't the baby I had carried for 9 months.

Out of the blue, Brad says, “If Kamdyn has Down syndrome, you’ll have to stop working and stay home with her. I could never trust anyone else to watch her.” I agreed. Even though I knew it would a strain on our finances for me to stop working, I wanted to be home anyway. The thought of staying home with my kids was about the only bright spot I could see at the moment.

At some point during that day, they took Kamdyn for a blood test to be sent out to test for Down syndrome. She was gone for what seemed like forever. It became apparent that things were not going well. They insisted that we not be present, because they knew it would be difficult to extract such a large sample from such a tiny baby. I knew that she must be screaming, but I pushed the thought out, trying not to think about it. As we sat, waiting for her return, another visitor arrived. This time, the youth pastor from our church. He walked into the room, but we had no baby. "She's out having a little blood work done," I said. Brad went to check on Kamdyn to see if they were almost done. I'm not going to tell him, I thought. I can't bear to utter the words one more time. It felt good not to tell someone, but it was a dark cloud hanging over my head. I felt like a phony. Like I was trying to be the person I was yesterday, but I wasn't. That person was gone, and I had become a horrible mother, who feared her own child. Brad came back into the room, pushing the small plastic bassinet with a smile on his face. As much as I feared her, I knew she belonged with us. She needed to be with us.

The next couple of days proceeded with more of the same. Dark thoughts. Visitors. Kamdyn had an echo cardiogram, and the results were reported back to us that she had a small hole, a PDA, that would close on it's own. (It was an incorrect diagnosis, and she actually had a large hole and would be in heart failure) For now, that was a relief. A consolation almost. Our kid probably had Down syndrome, but at least she was healthy. Before they would release Kamdyn, she had to pass a car seat test, due to her premature delivery. Yet again, Kamdyn was wheeled out of our room and into the Special Care nursery, where she would be buckled into her car seat, while her oxygen levels were measured for the next hour. When she was done, the nurses reported back. She failed. This meant we had to find a special car seat. First we were told a newborn car seat, so Brad called every store he could think of that sold car seats to see if they had specialized newborn seats. They didn’t. Another nurse came in and told us we needed a car bed. We had never heard of it, but we were determined to find one. Brad called around some more, before we were told that the Health Department had a car bed that Kamdyn could borrow until she graduated to a regular car seat. During our hospital stay, Kamdyn bilirubin levels continued to rise, but she was given the all-clear to go home with instructions to follow up with the pediatrician and redo blood work in a couple of days. Reluctantly, I took my new baby home.

At home, Madison and Austin were excited to see her and hold her. We had more visitors, including Brad's brother, Mike and sister-in-law, Meredith, who surprised us and drove up from North Carolina. They knew this time was difficult for us, and they wanted to show their support and see the new baby. Having them was a welcome distraction, because it helped me to avoid thinking about the things that so steadily plaque my thoughts. Everyone sat in the living room, watching something on the TV. I walked out to the living room and plopped into the recliner seat. "I feel terrible. I'm depressed," I said, being more candid than I cared to be, but I'm sure everyone knew it anyway. "Do you want to go out?" Meredith asked. "It might do you good to get out." "No," I said. "I don't feel like going anywhere." I couldn't bear the thought of anyone seeing me. I feared that everyone could see right through me. That they could see how miserable I was. I was supposed to be happy. I just had a new baby, but I wasn't. Staying in and hiding seemed like a much better plan. The first night Kamdyn was home from the hospital, we laid down to sleep, exhausted and spent. I set my alarm to wake up 3 hours later to make sure she ate, and I went to sleep. When the alarm went off, I reached over to the bassinet and lifted her out. I moved her around, but she didn't even stir. I changed her diaper, and still nothing. I figured she was just really tired, so we decided to let her sleep for another hour or so before I tried to wake her up again. When the alarm went off again, I did the same routine, shifting, changing, moving, taking off all of her clothes, putting her in the position to nurse, but she didn't even begin to wake up. At this point, Brad was up with me, so he tried to wake her up too.  Still nothing. Brad went to the bathroom and wet a wash cloth with cold water. We wiped her nearly naked body with the cool wash cloth, and she jumped, but she still barely woke up, certainly not long enough to nurse well. We called the hospital so see what they thought, but the only thing they would tell us was to take her to the emergency room if we were worried. We didn't want to do that, so we kept wiping until she woke long enough to nurse. As the day went on, Kamdyn looked more and more yellow with the hours, and she could barely stay awake long enough to nurse well. We needed to go back.

When we got to the hospital, we stood in one of the labor and delivery rooms while we waited to see the doctor. The doctor came in and introduced herself as the doctor who had been present during the delivery. She was the doctor who had called the secret meeting of nurses and staff after Kamdyn was born, that Brad would tell me about later. "I thought the way they all met up and whispered was strange at the time," he said. We still did not have Kamdyn's blood work results back yet, telling us whether she had Down syndrome. "My brother has Down syndrome," the doctor told us, "so I saw a lot of the characteristics when your baby was born. But she doesn't have all of the characteristics, so she may not. I'm really not sure. There have been a few times that we have ordered the testing, and it was negative." More hope. But even the hope hurt, because I didn't know if there was any point. Kamdyn was admitted to the Pediatric floor. She was stripped of everything but her diaper, and a pair of goggles were placed over her eyes. She laid in the bili bed with blinding blue light shining down, allowing her skin to soak in the light. Seeing her so vulnerable, legs spread wide, so frail and weak, all I could thin was, I don't want her to die.

I had no control of anything. I couldn't change whether or not she had Down syndrome. I couldn't make her better. The only thing I could control was what she ate. When the doctor told me that her feedings needed to be supplemented to make sure she was eating plenty, I decided she wouldn't supplement with formula. It had to be breast milk. I could do that, even if I couldn't do anything else. When feeding time came, we would switch off the bili lights, remove the goggles and wipe Kamdyn with a cold wash cloth until she woke up enough to nurse. When she tired of nursing, we forced the nipple from a bottle into her mouth, and barely conscious, she would suck. After the feeding, I would sit and pump for the next 20-30 minutes, in order to get enough to supplement for the next feeding. The process was exhausting, but I had to do it. I wasn't sure if I could provide the most basic need of love, but at least I could provide this.

On the second day we were in the hospital with Kamdyn on constant bili lights, it was the day I needed to go the OB/GYN’s office to have my staples removed. I was glad they were being looked at, because one of those student nurses had pressed roughly in the wrong place during one of those exams and popped a staple out. I wanted to have it checked out to make sure it was ok, but I was dreading having to face people and talk to them. It was the last thing I wanted to do. My friend Carrie picked me up at the hospital and drove me over. I was sitting on the exam table when Dr. B came in. “How are you feeling?” he asked. I immediately burst into tears. I couldn’t even answer the question. From my response, he suggested an anti-depressant to help with the depression. Hesitantly, I took one, wondering how long they took to work, wishing it was immediately. After 36 hours, Kamdyn’s bili levels lowered, and she was able to go home. The nurses told us that we should do another car seat check before we went home. Not taking into account her low muscle tone and premature birth, they assured us that she would be ready to use a regular car seat. Our nurse, a short woman with short, kinky blond hair wheeled in the machine that would measure her oxygen and arranged the wires that were needed. Meanwhile, Brad laid Kamdyn’s car seat on the end of the bed in front of the machine. We laid Kamdyn on the bed and hooked her up to the machine before placing her in the car seat. The nurse fumbled with the buttons on the machine, and with each button she pushed it became evident that she had no idea what she was doing. “You can hold her for the car seat check if you want,” she said to Brad. A little surprised, Brad replied, “How will we know if she passes the test if I hold her?” “Well, you can keep her in the car seat then,” she said. “There’s also a way to position blankets around them to help them sit up straighter so she will pass the test,” she went on. She grabbed a receiving blanket from the bed and began rolling it up. When it was rolled tight, she began to push it down behind Kamdyn’s back. No good. She pulled it out, rolled it up again, and tried again. No good. “It’s ok,” I said. “I’d rather just see how she does on her own anyway.” The three of us stood watching Kamdyn, watching the numbers, waiting to see what would happen. Suddenly, the numbers started going down. 89.…88.…87 BEEP BEEP 86...85...84 BEEP BEEP “Why is it doing that?” I asked with panic setting in. 83.…82.…81 BEEP BEEP “We need to get her out of there,” a little more panic in my voice. “She’s fine. She’s just holding her breath,” our nurse said. 80...79...78...77 BEEP BEEP 76... “Get her out!” I yelled as I grabbed her as quick as I could, yanking cords. My heart racing, I held her close. She was safe. Now I knew. I loved her. She was mine, and I had to protect her. She needed me, and I could do this. With her bili levels back up, we buckled her into her car seat and went home. Our only instructions were not to use a baby swing or a bouncer, and keep Kamdyn lying flat in order to keep her oxygen levels up.  

At this point, my mom was at the house helping with Madison and Austin and assisting me with whatever I needed. She was invaluable. After a couple of days of taking the anti-depressants, I was still panicked, terrified, and alone. I started to worry that taking the medication would make me stop producing milk, and I would lose the one thing I could give Kamdyn at that point. I was having trouble giving her my heart, but nursing was something I could do for her. I could give her the nutrition she so desperately needed. Nothing could get in the way of that. It was my only sanity. I decided to keep taking them and see what happened. When Brad went back to work that week, I was terrified. Just his presence helped me hold it together and gave me some sort of peace. The friend, who had watched Madison and Austin during my delivery, came and helped with them one day. She took them out of the house and brought them back around lunch time. I could tell she wanted to head home. She asked if I needed anything else, or if she wanted me to stay. My head was screaming, DON'T LEAVE ME! but I couldn't tell her. I smiled and said we were fine. As soon as she left, I was gripped with fear. I wasn't sure if I could stand being alone with my own children, and I didn't know how to treat Kamdyn. All of the motherly instincts were there with no connection. I could still barely go up and down stairs, so I thought it would be better to move everyone downstairs and stay there. Once we were all down, I flopped my tired body on the couch and sobbed. Realizing that this situation was not good, I called Brad, sobbing and incoherent, and begged him to come home, but he couldn't come right away. I was stuck. All I wanted to do was run away. I wanted to run back to the morning of April 27th when everything was normal, when my life was simple, but I couldn't. I was stuck. When Brad got home, I was so relieved to be rescued, and I realized that I was not ready to do this on my own yet.

Once again, my mom came to the rescue and came over the next morning. As soon as she got there, she gave her orders: I would lay in bed all day, sleep, watch TV, and do nothing other than feed the baby. Finally, exactly what I wanted. To be left alone, not to have to face anyone, including my own needy children. And that is exactly what I did for days. I laid in bed. From time to time, I would emerge. I know my mom could see how hopeless I was. It must have been so difficult for her to see that. On one occasion, not sure which day, because they all run together, my mom said to me, "Tricia, Kamdyn is your baby. She's not a Down's baby. She is your baby." "I know," I said even though I still couldn't feel it. With each day, my anxiety grew more and more like a monster, it was taking me over. The sight of food made me ill, and I was eating less and less. At the designated hours, I removed Kamdyn from her bassinet and fed her, and then laid her back down. Then, I would pump and put the milk in the fridge to supplement for the next feeding. Other than feedings, I wasn't holding Kamdyn much. My mom saw that, and she would come in and ask to hold her. I knew she could see straight through me, and I hated it. I hated myself for being this way. I hated everything. Between feedings and after pumping, I would slink down into the pillows on my bed and stare at the TV, not hearing anything, because I was lost in my own thoughts. Eventually, the thoughts would take over, and I would burst out in sobs, where my body would shake. I begged God, "Don't let my baby have Down syndrome! Please!" But I knew it had already been decided. Nothing I did mattered. Each day, I felt worse and worse, and I felt like I was starting to make less milk on top of everything else. Panicked that the only thing I could do for Kamdyn would be ruined, I stopped taking the pills just in case that was it, and I forced myself to read Psalms from my Bible to try to find some peace.

Despite regular blood tests and a good eating schedule, with me setting my alarm clock during the night to make sure she didn’t miss a feeding, we were worried about the ever glowing yellow appearance of Kamdyn’s skin. We scheduled a doctor’s appointment, and Brad went with me. The doctor ordered another test to make sure, but he thought she looked better. The doctor opened his laptop to fill in some information. “Looks like her karyotype results are in,” he said. “They are positive for Trisomy 21.” What? What does that mean. I'm sure the look on my face showed what I was thinking.   “She does have Down syndrome,” he went on as he reached behind him to the box of tissues on the counter and placed one in front of me. As if seeing the tissue was permission to cry, the flood gates opened. “But it’s not your fault,” he continued. “You didn’t do anything wrong, and she is doing great.” It’s not my fault. It’s not my fault. A weight lifted. How did he know I needed to hear that. The doctor finished his exam on Kamdyn and reported that everything looks good. He even reported that he didn’t hear a murmur, and the PDA they found in the hospital must have closed. That’s good news. More relief. We left the office and went down a couple of doors to see NanNan, Brad’s mom, while she was at work. “The doctor just told us that Kamdyn has Down syndrome,” Brad told her. “Well, that’s ok,” she said. For the first time, I thought maybe it was ok. I got in the car and called my mom on my cell phone. Crying, I told her the results were positive, and Kamdyn has Down syndrome. When we hung up the phone, I felt a burden lifted. Now that we knew, we could just move forward and figure it out as we went. I knew I loved Kamdyn, and that was all that mattered.

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