Since starting this blog I have focused on the children I have. One child that I had, but is no longer with me is still just as important in my life. I have a baby in Heaven. I have a little angel there. Her name is McKenlee Peyton Gratz Rogers. She was born December 19, 2003. She would be 12 years old this year. It is hard. I see other 12 year olds and wonder if she would be like them. I wonder what her favorite color would be. Would she be really girly?
In April 2003, three days before my 21st birthday I found out I was pregnant. I had been married for 4 months. (My ex husband and I had eloped to Gatlinburg, TN on 01-02-03 and married in a small chapel with just immediate family. We were planning on having a wedding in May. He was in the Army and was in basic training in Georgia and then got stationed to Alaska. Of course the pregnancy wasn’t really planned but we were very happy.) I immediately started in with morning sickness. Actually, I had morning sickness the week before while in Florida on vacation but didn’t know what was wrong with me. I also apparently didn’t realize I was “late” by about 8 days. I just been enjoying myself on the beach. When I could confirm this was morning sickness after 3 positive tests, I puked from 10am until 8pm. I would put a glass of water on my nightstand before going to sleep so that I could drink it upon awakening so that I wouldn’t dry heave. Thankfully I was still living at home with my parents and not working either. So I actually had it pretty easy. I became part of the couch for 3 months and lived on tomatoes and coco-cola. I ate tomatoes like apples and drink coke to settle my stomach. I also enjoyed red kool aid, but it didn’t settle well so I would make a big glass just so I could throw it back up! I also became glued to the book, What to Expect while Expecting. I knew all about pregnancy. What to expect. When to worry. What to be concerned about. All of the body changes. The hormones. The amount the baby was to move. The amount of weight I was to gain. I started drinking organic milk when I finally could eat again. I avoided coffee, stopped my medicines, stopped smoking, no drinking, no tuna or swordfish, etc. I went by the book. I went to the doctor every month. I had my ultrasound at 20 weeks, we found out it was a girl. Everything looked great. I gained 33 pounds, blood pressure stayed normal, no gestational diabetes, no complications. But looking back now and hindsight is 20/20 I now realize McKenlee didn’t move like a “normal” baby. But with her being my first I didn’t know the difference. I counted and she moved the recommended amount of times. I think it was 10x a day possibly. And she did, but that was about it.
So come December 18th after being a week past my due date I went in to be induced. I went in that evening and started with cervadil to have the Pitocin started at 5am on the 19th. So after laboring close to 13 hours and dilating to 3 and no epidural the doctor decided to do a C-section. I was a nervous wreck but also ready to be done. Even though I wasn’t dilating I was contracting at constant peaks and very little relief. I just wanted her in my arms and to be done with labor. My ex-husband wasn’t able to be there. He may have actually been in Afghanistan at that point, so my mom was my partner. She dressed in the surgical clothes and we went back. I don’t really remember the surgery or actually seeing McKenlee right when she was born. But I do remember going to the recovery room and waiting to see how she was. I remember asking my mom how she was and mom would say she is fine, then leave the room. I would ask again and mom said she had clubbed feet but that could be fixed. And after that things are a blur. I remember going to my room and I still hadn’t seen McKenlee. I was anxious to hear how she was from the doctors and get to hold her. At this point I had absolutely no idea anything was wrong. I knew she had lots of dark hair. I knew she weighed 7 pounds 13 ounces. She was a big baby. She had big eyes and seemed healthy. I remember wondering why I hadn’t got to see her yet. Then 2 doctors came walking in. One I recognized as the pediatrician and one I didn’t recognize. As I laid in the bed and they stood at the end, asking who I wanted to have in the room while they talked to me I knew something wasn’t ok. I said that my mom, dad, and sister could stay in the room. My grandmother and aunt left the room. As I lay there sore and recovering from having the C-section I tried to sit up more so I could see the doctors better. The pediatrician said that he was sorry, but there was something wrong with McKenlee, they just didn’t know what. I can feel the pain in my chest, that sickness, that breath taking pain come over my body. I remember I rolled to my side and the pain from the surgery took over and I tried bringing my knees up to my chest but couldn’t, so I rolled back to my back. I apparently screamed because my aunt and grandmother heard me from outside the room. I don’t remember what the other doctor said, but I do know that she stood there holding some papers. The pediatrician explained that McKenlee had low muscle tone and wasn’t responding to stimuli the way she should. And then I don’t remember what else he had to say. I don’t remember them leaving. But I do remember the nurse bringing McKenlee to me. And I remember being disappointed that I hadn’t got to hold her or see her as the “perfect” baby I thought she was. I already knew there was something wrong by time I got to hold her. There was a gloom that hung over already. I am so upset still to this day that I never got to experience just seeing her as a healthy baby. I think every mother should get to hold their baby for the first time and know that they are perfect. I already knew she “wasn’t perfect” The doctors words kept ringing in my ears, “there’s something wrong with her” And honestly I almost didn’t want to hold her. What was the point. No need to get attached now. Just send her back to the nursery. And of course looking back that was just a defense because I was already so attached I didn’t know how to accept that something wasn’t right.
Fast forward a few days. After several doctors coming in and out non stop. Doctors were also coming from other hospitals to see if they could confirm what was wrong with her, we got a loose diagnosis. There was no real test for this syndrome but based on her symptoms the genetic specialist from UK Hospital confirmed what we didn’t want to hear. She had Zellweger Syndrome. It is incurable and terminal. They had only saw one other case in the history of the hospital. It affects 1 in 100,000 babies. It is a recessive gene syndrome, meaning I carry a recessive gene as did her father. Basically she had a disorder of her peroxisomes. Peroxisomes are needed for normal brain, liver and kidney function. She had cysts on her liver, kidneys, and brains. She also had an undeveloped myelin sheath. She also had low muscle tone, an enlarged liver, characteristic facial features, she tested with poor hearing, and she had seizures. She was a classic case of Zellweger. There was really no doubt that this what she had. Of course, I didn’t want to accept that diagnosis. I still had hope that the doctors were wrong. They were mistaken. She was going to beat this. The cysts and seizures would go away. Her muscle tone would go to normal. And still to this day I “know” that she could hear me. I know her eyes turned to me when I talked to her in her little crib in the NICU.
McKenlee never got to come home. She was in the room with me at the hospital when a nurse came in and checked her and realized her color wasn’t good. She wasn’t getting enough oxygen so they placed her in NICU. And as bad as this makes me feel I am not sure how many days old she was at this point. The days began to run together and everything is sort of a blur. Between the pain pills for surgery, the Xanax for nerves, the antidepressants for my mood, the doctors, nurses, visitors, and trying to see if my husband got to come home from Afghanistan I lost track of time. I do know that my ex did get to come home. We picked him up from the airport, so at that point I had already been released. It as very hard to be wheeled out of the hospital with balloons, toys, and a diaper bag, but no baby.
We spent 12+ hours t the hospital everyday for the 2 weeks she survived. We went home long enough to sleep and shower. We ate at the hospital and set in the private NICU room they had given us. We got to give her baths and hold her. She had so many cords and machines hooked to her though. She was on oxygen, a heart monitor, a monitor for the seizures, and she also had a feeding tube. But we would sit in the glider, lay a pillow on my lap, leave her all swaddled and just rock for hours. I so bad wanted to sneak her out of the hospital, just take her home. Then panic would set in, how would I care for her. She needed these machines to survive. They had shown me how to change and insert her feeding tube, which I didn’t like doing. It was just wishful thinking. I wanted her to see the nursery I had prepared for her. I wanted her to come home.
Christmas day McKenlee would have been 6 days old. And since everyone had assumed she would be home, there were many presents for her under the tree. So I sat and opened those without my baby there. I held up the little outfits knowing in the back of my mind she would never get to wear it. But smiling and thanking everyone for what they had got her and saying how cute she will look in it. But I think we all knew she would never get to wear the clothes. Or play with the toys we had for her. Just no one could say it out loud.
January 1st 2004 mom and I were having lunch at Olive Garden before heading to the hospital. My phone rang and it was the doctor. McKenlee was having one of her spells and he thought we needed to get there fast. Of course we left immediately, we had only ordered drinks at that point so we just left. Getting to the hospital was agonizing. I couldn’t get up those stairs fast enough. We went in to find McKenlee comfortable but struggling. So I held her, mom called my dad and my ex. The hospital gave us a room to stay in that night there on the same floor. And we took breaks. We rotated for over 15 hours. At one point a doctor came in and evaluated her, he turned to me and said “I think she is trying to die” Oh, God, the pain. The gut wrenching feeling that came over my body. I got mad at him. I didn’t want to hear that. I didn’t need him to tell me my baby was dying. I needed him to fix her. To make her better. I needed a miracle. But I also needed her to stop holding on. And that is what I whispered in her ear as she lay in her little bed. I told her to let go and not hold on for mommy, I promised her I would be ok.
Hours passed and the time came. The date was 01-02-04, on our one year wedding anniversary. Her dad was holding her and I was watching the machines. I watched as her heart rate went from the 90’s to the 60’s. And the last number I remember was 17bpm. Then I saw her oxygen monitor had 000’s on it. I heard the beeping become a solid noise. I looked at her dad, I looked at the nurse, I looked at my mom and I started to shake. I couldn’t stand. I needed a chair. My mom came over and sat me down.
We held her for another 4 hours after she passed. We brushed her hair. We changed her clothes. I caressed her soft little face. I just held her. I knew that once I gave her over to the funeral home I would never get to hold my baby again. I just held her as long as I could. I didn’t want to let go. I couldn’t let her go. How was I supposed to let my daughter go, to never hold her again. To never feel her whole little body in my arms. I couldn’t, but I had to. So I did. I walked out of the hospital with no baby. I walked out of the hospital to drive home and not come back to see her. I drove home no longer a mother.
We had the funeral and it was lovely. We buried her in her “coming home” outfit. Which I guess was really her “going home” outfit. She didn’t get to come home with me, but she went home. She went home to the best father. She has no more pain, no more suffering. She no longer is having seizures. She no longer has to have a feeding tube. She has a perfect body. She is that perfect baby I imagined her being. And I can’t wait to see her that way. I can’t wait to hold my baby again. To feel her whole little body in my arms. I know that day will come. I know she will be waiting for me at the pearly gates. And I know that we will know each other as if we have never been apart. And at that point I will know what her favorite color is. Or if she is girly.