Just the other day I can across a Time Hop from two years ago of my then little toddler girl sitting at a coffee shop with a giant cookie. While the photo seems simple and genuinely sweet, I saw it and a rush of emotions came flooding back to me.
This photo was snapped shortly after a routine, weekly ultrasound of my 29 week babe (who was given the nickname Coco Loco by his big brother). This particular ultrasound was followed by some bad news. I was told that we were almost guaranteed a scheduled blood transfusion on our baby, while still in utero. We were going to continue to monitor closely (like we had been doing all pregnancy long) but we were told to start preparing ourselves for the possibly of this procedure. If we were to avoid the transfusion, we may end up with an early delivery and a transfusion on the baby as a newborn.
This was my second high risk pregnancy with a hematologic disorder. From the very beginning I was well aware of the possibility of a transfusion. However, this pregnancy was so closely monitored, I felt a sense of peace for most of it… until that day. I sat there in the coffee shop, with my almost 2 year old and just sobbed. My purse held fresh ultrasound photos of Coco Loco, something I usually spend time marveling over, but that day, I couldn’t bring myself to even look at them. To look at them brought on more fear of the unknown.
Thinking back on that day, 2 years later, I’m able to view the photo and reminisce at what I was feeling. My fear was legitimate, yet still was my trace of hope. I began to think of what helped me along the way.
Stay away from Dr. Google
For a lot of us, our first instinct when faced with something we don’t know much about is to turn to the world wide web. We mistakenly type in our search on Google and most likely, the worst case scenario pops up. My biggest advice is JUST DON’T DO IT! It is nerve-wracking when we are handed a diagnosis. It is especially frightening when we don’t know much about the diagnosis. I found my best bet was to take all of my questions to my perinatologist before doing my own research. Which brings me to my next tip…
Ask all the questions
This process is new to you. It is intimidating and quite legitimately terrifying. Your OB and/or your perinatologist are your experts. For my situation, I wanted to know as much information as possible. As I would think of questions throughout the week, I would jot them down and bring them to my next appointment. I felt better because I had a plan in my head. It may seem strange, but I needed to know the worst case scenario. It reassured me to have a plan of what could happen, prepare myself for the possibility, but also ask what the likelihood of it occurring would be.
Be your biggest advocate
If you are working with both your OB and a perinatologist or any other specialist for that matter, be sure everyone is on the same page. A lot of times, I was filling one in about what the other one said, which was fine for some minor issues, but if it is something major, ask your doctor to send a note to the other doctor. Speak up if you don’t understand. Ask about other options if you feel uneasy about something.
As difficult as it may seem, hold onto hope. Even if you know the worst outcome. Even if the odds are entirely not in your favor, be this baby’s little light. I was not optimistic my entire pregnancies. I had many meltdowns. Multiple moments of pure sobs of panic, letting myself believe the worst was going to happen. Often a good cry was needed, I still had to pull myself out of that rut. I had to find something that gave me peace. Consider meditating, praying, talking with a friend/loved one/counselor.
When I would catch myself getting anxious or thinking the worst circumstance was going to occur, I would tell myself: I am this baby’s MOM. Out of all the people in the world, I should be the one with the largest hope-filled heart.
I’d love to hear how all of you navigated the high-risk pregnancy journey. What are some strategies that got you through it?