July 5th, 2018
I approached my 20 week ultrasound confident and without any worries. I had the day in Sioux Falls to myself in which I had created its agenda in my head (i.e. appointment, lunch, shopping, pedicure) and was eager to get the day underway. The ultrasound technician was nice and talkative. While I appreciate the kind gesture of small talk, I was there for the purpose of seeing my beautiful child, hearing his heartbeat and getting on with my lunch date with myself - this pregnant girl was hungry! While there was nothing said in my ultrasound that made me truly realize there was a problem, I look back now and can see the red flags waving strongly.
- The small talk was rampant in the beginning and was null by the end, which was my preference anyways.
- She took an absurd amount of pictures of his face, but who wouldn't want to keep looking at that beautiful baby boy?!
- This ultrasound was taking FOREVER, did she not realize that it's lunch time?
- She doesn't confirm all looks ok, but doesn't say otherwise either. She just says that the radiologist will give me a call with results.
- She says, 'Good luck' as I leave the room. What did I hope to be lucky about?
It wasn't but 10 minutes after I'd left, almost to my lunch location, when I received a phone call from the other ultrasound location, asking me to come in for a repeat ultrasound. Well crap, I thought, that can't be a good sign. Once again, lunch was postponed - the agony!!! At my next ultrasound, I was greeted by two ultrasound technicians, a perinatologist and the genetic counselor. Confirmation received, this wasn't good. The perinatologist explained that my first ultrasound showed a cleft lip and palate and that they'd like to get more pictures, provide me information regarding cleft lip and palate birth defects and arrange future appointments with the cleft team including plastic surgery, ENT, orthodontist, OBGYN, genetics, etc. She said that the root cause of such birth defects are unknown and they tend to be multi-factoral.* I sat in the dark ultrasound room taking in this information as if she was telling me I couldn't eat at Panera Bread for lunch, but would have to settle for KFC. I mean, I was disappointed, but I could find something decently satisfying to eat at KFC, right? I was calm and receptive due to thinking that a cleft ain't no thang.
As I exited and walked towards my car, I remained level-headed with a rational mindset about this unexpected news. I called my husband, Derek, and informed him fairly nonchalantly (similar to how my perinatologist informed me) that our son had a birth defect, a cleft lip and palate, which will bring about feeding difficulties and a couple of surgeries [At that time, this is the full extent of my knowledge of cleft lips and palates]. I state that this is crappy news, not ideal, but it's fixable and nothing we can't handle. He hesitates, but I believe coughs out validation eventually.
My original agenda for the day was adjusted as I just wasn't in the mood for fun and pampering, but wasn't going to forego lunch! I hit up a drive-through and started my nearly 2 hour trek home when my mind began to race. Not far into my drive, I couldn't stop the million questions running through my head about the news that I was just handed not long ago and quickly realized that I knew squat about what a cleft lip and palate diagnosis really meant. I pulled over and did some research, shying away from Wikipedia, of course. And that's when the semi-truck hit me. [Not literally, thank God!] There was far more involved with this news than I had processed earlier, far more challenges, more surgeries and even more unknowns. I cried the entire rest of the way home. For your own knowledge and understanding of clefts, I invite you to check out the links provided on the home page of the blog.
My emotions were on a crazy rollercoaster ride the rest of the day and evening, ranging from positive to negative and everywhere in-between; and when I was still wide awake at 11:45pm, I started writing out my thoughts.
My questions, concerns, fears and worries:
I am scared to death about what this diagnosis means for my child.
I am scared to death about what this diagnosis entails for my family.
I am apprehensive to share the news with others in fear of their reaction or reflective pity.
I feel guilty, what did I do wrong? What could I have done differently? If only I could go back…
I feel uncertain how to prepare Rome and Winslet as I want them to love their brother, not be afraid.
I feel nervous about how our daycare provider is going to receive this news. Will they still love and care for my child?
I was nervous about adding a baby in general with the juggle of work and home, will l be able to make it all work with the special care and needs this child will require?
What will I think of my child when I see him? What will others think?
I am nervous in thinking of the financial costs associated with the journey ahead.
I am nervous in thinking of the financial costs associated with the journey ahead.
I am sad in thinking about the potential emotionally impact this could have on my child.
I am helpless in sending my child into [numerous] dangerous surgeries.
What else could be/go wrong?
How do I promote love for my child without upsetting others and/or myself?
How can I be genuinely strong in the presence of others AND by my lonesome?
How severe will it be?
I love him unconditionally already, this doesn’t change that.
This is a fixable problem, resolvable with love, time and patience.
There are far worse diagnoses, circumstances, etc. that could impact one of my children.
Everyone is judged, my child is not the exception.
The people that truly matter, don’t mind.
I need to approach this day by day and not be overwhelmed with the overview.
God will provide strength, opportunities, growth, health and healing. Pray and ask.
We will persevere through the obstacles and be better and stronger for it.
There is 4 months left to talk to and prepare the kids and our daycare provider.
There is a teachable opportunity to truly embrace love, kindness and support instead of appearance-based worth.
Medical advances are astonishing, he will be in the based care possible.
This moment can either define me or I can define this moment.
Positive thinking and gratitude-focus mindset are game changers.
*I am grateful to be this child’s mother.
*I am grateful that God believes in my capabilities to persevere through this.
*I am grateful that this child continues to be healthy, grow and develop within my womb.
I fell asleep shortly after.
*Everyone keeps telling me I don't need to justify myself or my actions, but I just feel like I do, so bear with me. For the record, we had genetic testing done on this child with no recognition of any genetic link, I have been taking prenatal vitamins for YEARS, I went off caffeine and alcohol prior to our embryo transfer and haven't touched it since, I don't eat cold processed meat, I heavily limit red meat and I shy away from chemical anything in our home and the list of positive choices on my part goes on and on. On the flip side, I have extreme guilt for my sweet tooth, drinking a few diet sodas early in pregnancy and getting my hair colored. Guilt. Heavy guilt.
*Everyone keeps telling me I don't need to justify myself or my actions, but I just feel like I do, so bear with me. For the record, we had genetic testing done on this child with no recognition of any genetic link, I have been taking prenatal vitamins for YEARS, I went off caffeine and alcohol prior to our embryo transfer and haven't touched it since, I don't eat cold processed meat, I heavily limit red meat and I shy away from chemical anything in our home and the list of positive choices on my part goes on and on. On the flip side, I have extreme guilt for my sweet tooth, drinking a few diet sodas early in pregnancy and getting my hair colored. Guilt. Heavy guilt.