1 in 700
Updated: Jun 1
Monday morning, September 11, 2017 was a typical morning, I scrolled through the Facebook posts about 9/11 and thought of how fast time seems to pass, I feel like that was just a few years ago not nearly two decades. Being pregnant, I thought about all those women that were on the news after the tragedy that were pregnant during 9/11, I thought, wow those babies are now nearly adults, and my heart hurt while I thought about how they may feel today. I also had a ton of excitement this day, I got to work excited that we were finding out if our second child was a boy or girl in the afternoon. It was a hard day to focus on my job, I kept day dreaming about having another little girl, wondering if she would look like me, or if she would look just like her sister and daddy. I day dreamed of two giggling girls years down the road sleeping in each other’s room, telling secrets and playing make believe. I wanted another girl so badly that my mind never even considered what life would be like if the baby was a boy. I worked on tasks for my job, then I would trail off into making to do lists for myself, you know the important stuff…email my hair dresser to get an appointment, look into wood and paint prices at Lowes and Home Depot to finally start on the entry way project I have been wanting to do, boots…I need new boots, I better write that down, my mind just trailed around to things I thought were important.
The time came for my ultrasound and I was so anxious going in, our first child took forever to find the gender, she was curled in a little ball not letting us see a thing, so I wished the whole way to the OB that this baby would be wide open for us to see! I met my husband there, he was equally anticipating to hear “it’s a girl” so hand in hand we went in hopeful together. We played coy with the ultrasound tech, Janna. She said, “so we have any guesses, or what are we hoping for” – We both just said, it doesn’t matter, even though that was a big fat fib! This baby was easy, laying in a position as if she were sitting in a chair, thighs nearly straight out and legs bent at the knee. It took what seemed like five minutes and Janna said, “there they are, the three lines, it is a girl”! I remember hearing my husband say “YES” or “YEAH” or something similar, I turned around to Lee and we high-fived and smiled wide at one another! I teared up, I was so happy. Janna, the tech, told us we were so cute and that we warmed her heart. We confessed that we both really wanted another girl. The ultrasound proceeded, finding the heart, the kidneys, the spine, fingers and toes, measuring the legs and head, all the normal things. Janna kept telling us that our little girl had her hands in her face and she would really like to get a good look at her face, so we tried coughing, changing positions, laying on each side, putting my legs bent at an angle, anything to get this baby girl to wiggle around and move those hands. I felt like the ultrasound was taking a long time, it seemed longer than my daughter’s nearly five years ago, but I though hey, she is just being thorough! Finally after being in there an hour Janna seemed satisfied with her photos and we were escorted to wait for our OB. Those fifteen minutes between the ultrasound and the OB were joyous, the smiles my husband and I had could have been bottled and used to light up the sky in the dead of night. We were so excited for another girl.
Then everything changed. The doctor came in, (not my normal OB, but another in the practice), she had a flat affect and asked some generic questions, how are you feeling, are you feeling the baby move, etc. Then she flipped through some pages and said, “well everything looks good, but your baby has a cleft lip”. She said it so flat and so emotionless, I did not even look over at my husband, I just sat there, silent, looking blankly at the doctor. I asked how sure is that, and she said, “well ultrasounds are pretty accurate”. I cant really remember what else I asked, but I remember she had no answers, her answer to every question was the high risk specialists upstairs will tell you more. I was just lost for a moment. My husband and I just left, driving separate, we parted ways. When I got in my car I just broke, I cried so hard, all I kept thinking is this is my fault, this is happening to my child because of how I reacted when we found out about her, this is all my fault. I was so scared, what does this mean? Will she be ok, what kind of surgeries will she have to have? My mind was blowing up with fear and worry. Of course as soon as I got home I turned to “Dr. Google” and began reading everything I could about cleft lip and palate and let me tell you, it can be scary. I got on Instagram and searched #cleftlip and wow, my eyes were opened to an entire world of moms of cleft children. I saw posts such as “heading to her 8th surgery” – “day 111 in the NICU” – “after six weeks the feeding tube is coming out” – “here is Lilly just 10 weeks old heading in for her first cleft surgery repair, prayers requested” – I thought she said first surgery, the other post stated eighth, how many does it take??? The information was a lot to take in. I cried for days, my husband handled it better than I did. He cried with me once and then he was there to be my strong hold, he may have been falling apart on the inside, I don’t know, but he kept it together for me, trying to reassure me with scripture, making sure I remember she is a blessing no matter what she endures.
I thought, I need prayer, I need people to pray, prayer works, I know it works but I can’t tell people this, I cannot ask people to pray for us, we haven’t told many people we are even expecting. I started with my mother-in-law and asked her to please tell her friends, tell her prayer group and ask them to pray. I wasn’t even specifically asking for healing, I do want healing – complete healing, but if this is God’s will then please pray it is not severe, please pray her palate in intact (because everything I read, the cleft palate is the scary stuff). I messaged my two step-sisters–in-law and told them and awkwardly asked them to pray. My step-sister-in-law, Pam, sent me a message back saying, “Stacey never be ashamed to ask people to pray for you, there is power in numbers”. She didn’t know until now (if she reads this) how much that affected me, I thought about that statement over and over for nearly 24 hours and I decided to come out of my comfort zone and send a message to a group of faithful women and ask them to pray for my daughter. Most of these women did not even know I was pregnant. The out pouring of love from these women was amazing, some of them I really don’t even know and they sent me scripture, they told me things in their life that needed prayer, some that really know me personally texted me and with words of comfort and love. This…this is the church! This is what the church should look like, the outpouring of love and support from friends and strangers – the sharing of their own burdens, the encouragement of scripture, this is it, this is what God means in 1 John 4:7 –
Dear friends, let us love one another, for love comes from God. Everyone who loves has been born of God and knows God.
I am so thankful for those 20 women; their names are etched in my heart. I felt some peace and I felt their prayers and for a day I stopped Goggling, then later in the week a call came in from my OB office. I was told that my ultrasound had been sent upstairs to the specialists and the doctor confirmed he also sees a bilateral cleft lip. I was scheduled for another scan directly with their office the following Wednesday for confirmation and then I was left to sit with that and wait. After that call ended I could not stop crying, I tried, I was at work and I really tried to hold it together, I excused myself to my car and cried and just thought, I will get it out and go back in and I will make it through the day, but I didn’t, I could not stop, I sent a message to my three childhood best friends and said I can’t breathe, I can’t handle this…I just left and went home, Lee came home too and we sat together and prayed.
I have been met with many comments, “at least it is fixable” – “at least it is not terminal” – “one day when she is fixed, you won’t even think about the hard times” – I know this is all in comfort and I am so thankful that it is fixable, but also I am grieving the child I thought I would have, I am grieving the precious time with my newborn that I thought I would get, I am grieving the normalcy that I thought was happening. Instead of my biggest fears being how long before she sleeps through the night and how will we manage daycare, now my biggest fears are what if her tiny little two month old body doesn’t survive anesthesia and she never makes it out of surgery, what if her pallet is cleft too and she is on a feeding tube the first several months of her life, I fear how will I bond with her when I will be attaching devices and taping her face from just a few days old to prep her for surgery, how will she love me, the one who is supposed to keep her safe and care for her, but every day I have to struggle and cause her discomfort to get her face taped and put in a NAM device, all for her own health. She won’t understand.
My how your perspective changes when you are met with something you didn’t expect in life. Before my ultrasound I was planning home projects, buying new boots, planning for our tenth anniversary, thoughts of such things seem so silly now. My three childhood best friends, I love them, they were there to comfort me with discussion every day, they read every blog and article I sent them, they even distracted me for a while with discussion of home renovations, home building, and random life messages that we typically would talk about, and I was thankful for the distraction, but at the same time I just kept thinking if my child is facing years of surgery after surgery, I am not sure any of that normal stuff will ever matter to me again. Those woman are special, we can go months without speaking and we are not a constant in each other’s daily lives but when things really matter we are always there. When my grandma died a few years ago, they were all at the funeral, when I had back surgery they came to see me at home after, when my first daughter was born they came to see her, they are encouragement and love and I am so thankful.
We had our second scan with the high risk OB this past Wednesday, and the results were odd, the doctor saw what looks like a bilateral cleft lip, he showed us the dark lines on her face from her lip to nose, but there were some views of her face where it was inconclusive. The doctor’s comment was that possibly it is not severe so that is why from some angles we see it and others we can not. We think it is God healing her, making her perfect in His image. We were told by the doctor, “I would never worry parents for no reason, we do see something going on with her nose and lip, but I would like to look at her again in a few weeks before referring your to Vanderbilt”. Lee and I are taking this as a victory and a step towards Gods perfect healing. Please continue to pray for Vivianne’s healing and peace for us while we wait.