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Emmri's Story
"My name's Chelsey. It's taken me a while to write this because words are so hard to find..."
Well, let's start when I first found out I was pregnant, May 3rd 2010. I was 18 and still living at home with my dad, scared to death of being a single teen parent. I took my first test, in the mall bathroom, alone. I was totally freaked and went straight to the doctors to confirm the positive test. When the nurse read me the results, the room spun, my mind raced, I cried and I laugh because part of me was terrified and part of me thought they were wrong. She was rambling on and on and the only bit of information I caught out of all of it was, "and your expected due date is December 25th, a Christmas baby!" I started to sob. I knew from that moment that I was keeping my baby, and that every decision I made would be in his or her best interest from that day forward. It was no longer about Chelsey, it was about my baby to be.
I had a really normal pregnancy at first. No morning sickness, my face was the clearest it had ever been, and I was so happy all the time. Everything was so great, I couldn't have asked for an easier 7 months. I found out I would be having a princess Friday, August 13th 2010. I cried like a baby because I was so happy, I knew from day one I wanted a girl and I had many dreams that my wish would come true so to hear it was, was a truly amazing gift. I wrote her letters telling her how excited I was and I promised her I'd be the best mommy I could ever be. I told her about how I felt, what was going on at that time, about me and her dad, and all the dreams I had for me and her to do together. I was going to have my ballerina, my cheerleader, my gymnast, or whatever she chose to be and I would love her no matter what that was. I still feel that very same way today, she is more perfect than I could have ever imagined.
I switched doctors a lot, I couldn't seem to find the right one for us. I partially blame myself for not noticing she was sick sooner because of this, although I've never admitted it before now. I even moved to North Carolina for two months while I was pregnant.
Her heart rate was always excellent, and she was growing right on chart. They took a closer look at her heart one time but they later told me that it was normal and nothing to worry about. That was the last ultrasound I had at 30 weeks and they didn't say that they noticed anything abnormal. Towards the last couple weeks of my pregnancy I had this gut feeling something was wrong. I went into the hospital at least 5 times, and they always sent me home saying we were both fine. I even told my friend Jordan one time that I was scared my baby was going to be deaf or blind and she told me to quit being the worry wart I always was, and everything was going to be fine. I just knew in my heart something wasn't right with my baby. She only moved once a day towards the end, and I kept telling my doctors but they insisted she was a big baby and just out of wiggle room (I went from 115 pounds to 167 pounds). I would poke at her and shine a flash light on my belly constantly and nothing. I would eat sugary things and lay on my left side and still nothing but when I'd go into the hospital, they'd pick up small movements on the monitor and send me home.
On December 20th 2010, I decided I was going to take matters in my own hands, I was 38 weeks pregnant (full term) and had read a lot of stuff on castor oil online, so I figured I'd give it a go and see if it actually worked. At about 1 am, I started feeling contractions, I called my mom and she thought I was over exaggerating so she sent my cousin to come get me and take me to the hospital. We got there and they hooked me up to the monitors. After about 10 minutes the alarm started to sound and by then I knew how to read it because I had been there so many times. Her heart rate was dropping to about 90 beats. I started freaking out, a nurse came rushing in and put the oxygen mask on me and rolled me on my left side. Thank the good lord that it stabilized. So for the next 6 hours I laid on my left side not moving an inch because I was so scared something would happen to my baby. They told me to call whoever I wanted to have there because I'd probably be getting induced the following morning so my mom came up and camped out with me while my cousin went home and got bags ready. I was so nervous, excited, confused, and mostly worried about my baby and I thought it was the castor oil causing these complications. I was furious with myself. I later found out it had nothing to do with any of it. At 7am they came in and told me we were switching rooms and I was getting hooked up to pitocin (inducing drug). I started to cry, I wanted to go home. I wasn't ready to leave with a baby yet. I was so scared.
About 9am, a couple of close friends and family members came up to check on us all and see how things were going and things were barely getting started, so most went home to get things done for the day. At about 10:30 contractions started and I started dilating to a 2. Still thinking they had time, no one came directly up there. Well, things went fast and I flew through labor at a ridiculous pace. My main people in the room almost missed it because it went so fast! I had her at 4:41 pm, she was 5 lb 6 oz and 18 inches long. I chose not to get an epidural (which was God's doing because if I would have had one and it would have slowed down labor, the doctor said she may not have made it). I only pushed for 20 minutes, and then she got handed to be, beautiful as can be. I couldn't believe she was mine! I got to keep her! It was just unbelievable. She laid on my chest to have skin to skin for about an hour because she was very lethargic and had little purple dots all over her. Her cry sounded like a kitten and she barely moved at all. She also wouldn't eat.
They took her to do her tests and do whatever they needed to do while I made calls and visited with family and at about 7 pm they came down to let me know that she had petechiae (broken blood vessels) from low blood platelets. They said that it wasn't anything to freak out about and that they were just going to monitor her, feed her, and hopefully they would be up and everything would be normal in the morning. They had a test scheduled for 6 am and even though I had no idea what any of this meant I was worried, so I stayed up all night again. At 7am they informed me that they did not go up, they actually dropped lower to 40 (normal is in 250's) and they were transferring us to another hospital and an ambulance would be there to get her in an hour. I was heartbroken, I couldn't believe something was wrong with her, she was so perfect to me, how was something wrong? I though it must be a mistake, we're going to get there and they're going to give her medicine and send her home, they have to because she has to be fine.
We arrived at Bronson NICU after an hour long, nerve wrecking ambulance ride (which I insisted I rode with her). They wheeled her up to a room, showed me around and then asked me to wait in the hallway for her to get checked out. My mom had run home to get more clothes (because, like me, she didn't realize how serious this was or she never would have left me alone) but my cousins were waiting in the lobby and came back there with me, thank God. We all waited together in the hallway watching a swarm of doctors in yellow gowns, masks, and gloves, inspecting every inch of my baby like she was some kind of research project. It was so hard to watch, and if my cousins hadn't have been there, I don't know what I would have done.
After a half hour of this, a small, petite, blond doctor came out to me and I will never forget what she said. She introduced herself and said, "Chelsey, your baby girl is very sick, we are going to run some tests but her liver and spleen are very large and we may need to transfer her to Ann Arbor for a liver transplant. I'm so sorry. We will do everything we can and let you know as soon as we have a better idea of what's going on." I absolutely lost it, kind of like I am right now writing this. I called my mom and she flew all the way there to be by my side. A million things ran through my mind. I can't even begin to describe the feelings that came over me. After a long day in the waiting room, they called us back there. They said they were not transferring her yet and that her liver function was surprisingly good for how large it is so whatever damage done to it was done. She said that they were going to run several more tests and that they will let us know as soon as results started coming back. I asked a dreaded question that I didn't even want to ask, but my mouth wouldn't stop. "Is she going to make it?" and when she told me she can't answer that, it made for a long night of worries, prayers, phone calls, and tears, lots and lots of tears.
The following day a male doctor came in to her room while I was in there. He told me "this baby has CMV, it's not confirmed with a test yet, but you pull out the text book and she has every symptom. I would bet everything I have on it." I felt relieved; I said "Good so you can treat it right?" After a long pause, he said "Chelsey, this is not good news, we were hoping it wasn't CMV, and there is no fix for this and if it is CMV then your baby will be severely disabled." He then went on to explain that CMV causes blindness, deafness, mental retardation, bleeding problems, liver problems, breathing problems, cerebral palsy, autism, and can cause death. He also said there was only a 5% chance she'd be able to hear and she probably would have severe physical and mental problems. Those words were like knives, my heart broke. I can't even explain the physical pain I felt when I heard that. I couldn't stop crying, wondering why her? She's never done anything wrong, she does not deserve this. I prayed that God wouldn't do this to her and he'd do it to me, anything but make her go through this.
My entire family had been at the hospital the whole night before and that entire day. My mom hugged me and said "Chelsey, you can do this; you can handle anything she has wrong, just love her and teach her and be the best mom you can. You CAN handle this, and you have to be strong for her." That's when I knew that no matter what disability she had, no matter what the doctors said, I'd love her just the same and as long as she was here with me, that's all that mattered to me. I prayed every night and told God that if he let her stay with me, I'd be the best mom I could and I would never give up on her. That as long as he let me keep her, I'd be eternally grateful. That following day I heard the words I needed to hear, "Will she be ok? Define ok. She will never be "normal", but she's going to make it, and I promise you she will pull through." I hugged him (the doctor) and started to sob. That was the best news in the world to me.
The next couple of weeks she was on ganciclovir, there were good days with good news and bad days with bad news. A lot of emotional days and days I felt I could take on the world. I stayed at the hospital in a small two bed family room for her entire stay along with my mom. I slept, showered, and ate at the hospital. I fed her and changed her and did her care every 3 hours. Tubes came out and then they would get put back in. All together, she got one platelet transfusion, 2 spinal taps, numerous IV's, a picc line, 2 sweat tests (because she has cystic fibrosis also), 2 EEG's, one EKG, and numerous blood draws. They took her off the ganciclovir the day we got discharged because her white blood cell count got to 6, which is too low. I got to take her home January 7, 2011 and it was the happiest, scariest, day of my life. She choked every time she ate, and held her breath occasionally. She was tiny, only being 5 lb 6 oz when she was born and now still only 6 lb 2 oz.
At discharge she was diagnosed with CMV, seizures, Microcephaly, Thrombosis, Cystic Fibrosis, hearing loss, Intracranial Calcifications, and she was just recently diagnosed with Cerebral Palsy. She is progressing very well and is the happiest baby I've ever met. She never lets her disabilities slow her down, and everyone who meets her falls in love. She has been a fighter since day one, and I know in my heart she will never give up or let CMV define her and what she can and can't do. I believe in miracles and every single CMV baby is an angel that God gave to us for a reason. I was meant to have Emmri and she has already taught me so much in her 3 months of life. I am lucky to call her mine, and it's not me taking care of her, she's taking care of me. I don't know what I would do without her in my life. I am so blessed, and being a mother to a special needs baby is the greatest gift. They are remarkable little people who push through big obstacles and still have a smile ear to ear. She can open her hands and hold toys, she smiles nonstop, laughs out loud, and can almost roll over! She loves to coo and babble at you and she can sit up almost completely on her own.
I am so proud of her and my entire family and friends. I owe a huge thanks to every single one of them because they were the ones behind me pushing and cheering me on every step of the way. I feel so blessed to have every single person that I have in my life.
- Shared by her mother, Chelsey