My Alessandra Rose
I Will Carry You
I remember vividly how frightened I was when I first learned of my very unexpected pregnancy.
My life had seemed to have come to a screeching halt. So many questions and emotions clouded my mind, but what I felt more than anything was happiness. I was a mommy from the moment I found out.
The weeks passed slowly until the date of my highly anticipated gender-revealing ultrasound had finally arrived. I couldn’t wait! I planned to go straight to Baby Gap after to buy his or her first outfit. I was so excited as the ultrasound technician began and my child’s heartbeat filled the small room. Within minutes I was told I was having a baby girl. I already had her name picked out, Alessandra Rose.
While I waited to be seen by my obstetrician, I spread the happy news to my closest family and friends. I had no idea that my world was about to be flipped upside down. I must have been oblivious to how long the technician spent looking at Alessandra’s head and heart. But the minute I saw my doctors face, I knew. My heart even skipped a beat. She started telling me there were certain markers on my ultrasound that indicated a serious problem with my baby. She lost me when she spoke the words that I’ll never forget, “incompatible with life”. It was the first out-of-body experience I’ve ever had in my life. It was as though it wasn’t happening to me at all. I watched this poor girl as tears streamed down her face, while the doctor talked about blood work and level II ultrasounds needed to confirm this fatal diagnosis, Trisomy 18. A medical termination was offered at this time.
I barely recall walking out of that room or going down the hall to get blood taken. I don’t remember driving home. I only remember feeling so empty that I felt as if I might collapse into myself. The tears never stopped. For the first time in my life I knew what true heartbreak felt like.
The very next day, I was sent to a near-by hospital for further testing. A 45-minute ultrasound revealed more devastating news. Alessandra had a confirmed neural tube defect, a serious diagnosis on its own. The doctor cooly explained that this alone could mean she may never walk or go to the bathroom on her own. She would require immediate surgery after birth and the extent of the damage wouldn’t be known until that time. I was offered an amniocentesis as the doctor explained the spinal defect could be caused by the more serious issue, Trisomy 18. She stoically explained if I planned to terminate with the knowledge I already obtained, that the amnio wasn’t necessary.
For the second time in just 24 hours, I was being offered the chance to end my daughters life. This doctor was offering it just based on a neural tube defect. Simply because she wasn’t going to be perfect and could potentially need extra care. I was so horrified that this doctor specializes in bringing life into the world. How awful that she could so easily tell a patient and a mother, that her baby shouldn’t live.
I chose to do the amniocentesis that day. My boyfriend shielded my eyes as the biggest needle I had ever seen was inserted into my abdomen to slowly remove amniotic fluid. It was such a painfully long day waiting to get the call with the results. I prayed nonstop that Alessandra’s only problem would be the neural tube defect. But the call came and she was officially diagnosed with full Trisomy 18.
I was devastatingly heartbroken. My doctor invited me to come back in and talk the following Monday to discuss what direction I wanted to go in. There never was any other option for me. I was specially selected to be Alessandra’s mommy and there wasn’t anything the doctors could tell me that could make me want to opt out of my responsibility to my baby girl. I’m sure I shocked my OB when I told her I would carry my sweet girl until the day God called her home, but she was proud of me for making the choice so many other moms couldn’t.
My Tiny Fighter I never once gave up on Alessandra. I always held tight to the promise that God was always in control. I knew the odds and was painfully aware of the bleak statistics. The medical world and my rational side told me that Alessandra had over a 90% chance of being miscarried, stillborn or passing shortly after birth. Not to mention my doctor had told me that no doctor would preform the surgery that Alessandra required after birth. I refused to believe that.
I took it upon myself to contact neonatal specialists at one of our nations best pediatrics hospitals, Boston Children’s Hospital. I am blessed to live just an hour away. We set up an in-depth ultrasound, echocardiogram, and an MRI. With traffic it was taking us so long to get there and we were so late, that my sister and I got out a half mile away from the hospital and essentially ran the rest of the way there. We were there for almost 10 hours.
When the doctors sat down to discuss Alessandra’s medical problems, there were more than we had originally been told. Her neural tube was opened in the lumbar region, which is much more serious. This had caused a chiari II malformation in her brain, which essentially displaces the brain stem. Her brain hadn’t formed completely. There was dysgensis of the corpus collosum and a kink in her brain stem. These were her most serious problems as they could affect her ability to regulate her breathing, heart rate and body temperature. In addition, she had a large ventricular-septal defect (a hole in between chambers in the heart), which would require surgery as well. She had a coarctation of the aorta (a narrowing of the aorta). She also had hypertelorism (space between the eyes), micrograthia (small jaw), rocker bottom feet and clenched hands.
I felt my heart break all over again. I had officially done everything I could think of to help save my daughters life. But I knew that I could no longer make the decision to choose life saving measures if she was born alive. Instead, that was the day I decided I would choose comfort care for my little girl. I was so thankful to the doctors that were so compassionate to myself and my unborn baby. It was the first time I felt there were medical professionals that truly cared about her and were willing to do whatever I was comfortable with. It was truly amazing in contrast with the doctors that had diagnosed Alessandra.
I chose to live like Alessandra was already here. Every day was another gift that I was able to spend with my little girl. We traveled to New Hampshire to camp and see a concert. We went on vacation to Miami to bathe in the sun. We made a trip the Berkshires and New York. I read her bed time stories. I took her for ice cream. I took her to the beach and the lake. I did 2 maternity photo shoots. I brought the entire family to see her on a 3D ultrasound. I talked to her all day long and told her about the things I might never have a chance to. Most importantly, I never missed an opportunity to tell her I loved her. Every day was special.
Alessandra fought so much longer than the doctors assumed she would. I took a picture of my growing belly every week. To reach a new week with my baby girl was another huge milestone achieved. We were quickly nearing my due date (October 9th) as September was coming to an end.
On September 21st, I had my last OB appointment. For the first time Matthew decided to accompany me to my appointment. I had an ultrasound scheduled just to check how she was doing. Matthew and I watched her cuddled into the same position she had always slept in with her arms curled up around her neck. Her heart beat sounded through the room. It’s always been one of my favorite sounds. Later that night, Matthew felt her move around like crazy. He had always complained that she never moved for him.
The Day God Called You Home
The very next I waited all day to feel her move around. By 5 o’clock, I called my OB office and told them I hadn’t felt her move all day. They gave me instructions to go get checked at UMass Memorial.
I had my boyfriend drive me to the hospital and we waited in a tiny triage room closed in by a curtain. The nurse began to look for her heartbeat, and within seconds of her not finding it, I already knew. Alessandra’s heartbeat was always so strong. She excused herself and got the portable ultrasound. She could not find any movement in her heart. The doctor came in next and checked as well. After a few minutes that lasted a life time, he said the words that shattered my heart, “I’m sorry. She no longer has a heartbeat.” He left us in that tiny room and we cried for our little girl.
I let my closest family and friends know that Alessandra had been called home and I was to be induced that night. My family came to the hospital and most stayed the entire time. At 8 pm my labor was induced. I was already 3cm dilated. It was slow progress for awhile as the pitocin took effect.
I had the most incredible nurse, Nathalie, who gave us a room at the end of the Labor and Delivery unit. There were no other moms around us. By about 1:30 am, the pain set in and I was given fentanyl and my epidural. Some how I was able to go into a semi-sleep state. By 3am I knew it was time. I was fully dilated and in just 3 pushes, she was here.
Alessandra Rose McKenzie was born on September 23rd, 2012 at 3:15 am. She weighed 2 lbs 13 oz and was 15.5 inches long. She was so beautiful. I was so afraid my entire pregnancy that I would have to say goodbye before I said hello. But here I was in that exact position and I couldn’t stop smiling. It was still the happiest moment of my life. I was able to hold and cuddle my little girl. Kiss her cheek. Hold her hand. I was a proud mommy.
The moments were captured through numerous pictures. I was so blessed to have found out about Now I Lay Me Down To Sleep, which is a nonprofit organization that professional photographers donate their time and talent to give mothers like me professional photos of her precious time here on earth. I couldn’t have asked for a better and more compassionate photographer. His name is Jeff and he was an absolute blessing to my family. He came in the middle of the night and took hundreds of photos. They are by far my most prized possessions.
Alessandra was with us for 12 hours. The hardest moment of my entire life was making the decision to let my little girl go. I didn’t want to have to say goodbye. But I knew in my heart that it was time. I had just a few minutes of time alone with her to tell her how I was feeling. I just wanted to tell her how much I loved her and to thank her for changing my life for the best. Just after 3pm, my nurse came to take Alessandra away. And for the first time since I got the news that she had been called home, I cried. The tears said all the things that I couldn’t.
I was released from the hospital soon after. The week moved so slowly. The flowers, the cards and the outpouring of love from family and friends was outstanding. We had her celebration of life service at the one week mark. It was beautiful. There were pink roses everywhere. My father delivered her service. We followed it by doing a balloon release of 38 balloons to represent the weeks she was here with us. I never imagined doing a balloon release could be so touching. Matthew and I released our special balloons first. Everyone else followed right after with notes attached for Alessandra. Matthews balloon shot straight up to Heaven. All of the others stuck together and traveled slowly up and disappeared into the hazy sky. My balloon was the last to disappear. It traveled all by itself apart from the rest. The very next day I saw the most brilliant rainbow I had ever seen just outside my house. I like to think it was sent with love from Alessandra as a thank you for all the balloons and notes.
Since she has passed, I have shared her story with as many people as will listen. I’ve done all I can to share my message that life is precious no matter what. If I had been told the day she was diagnosed that she would say goodbye before I could say hello, I still would’ve made the choice to carry her. She was a blessing, as every child is. Some are called home far too soon. But her short life has touched so many people. She continues to touch thousands of lives around the world. I couldn’t be prouder to be her mommy. Princess Peanut was my greatest gift in this world. I will always love her and I will always miss her.