"Your baby has a rare form of heart disease."
We decided to drive separately to our appointment so that we could both head to work after. Admittedly, we were both kind of excited to get an opportunity to see our precious little miracle twice in one week. Right away we noticed how welcoming the clinic was and felt extremely comfortable being there. We went back for our ultrasound where we made small talk with the tech and for once, our little peanut finally seemed to "behave for the camera" (she must have known that this was a very important appointment!). The cardiologist came in and she and the tech talked a lot as they collected various images of our baby's heart. We had no idea what they were talking about since all of the terminology that now is second nature to us was jargon to us at that time. It was very intimidating being in the presence of such an important doctor and we were thankful to get such personalized attention from her.
For the next part of our appointment, we were led across the hall into a consultation room. It's kind of exactly how you picture it in the movies -- minimal "decorations", an easily cleanable stiff couch, small table and a couple of chairs. As we waited for the doctors to come in, I felt myself becoming nervous but didn't really know why. After all, we were just waiting to hear that our baby's heart was totally fine and we would be dismissed back to our regular clinic for the remainder of the pregnancy...oh boy, how wrong I was!
The cardiologist and OB came in and got straight to business. They asked us to share with them our perspective as to why we were referred to their clinic. We naively told them how our baby is stubborn and didn't let the previous tech and doctor get clear images of her heart so we needed confirmation that her heart was healthy. I remember watching as the cardiologist's facial expression showed a hint of disappointment before becoming extremely serious. The next few words that came out of her mouth changed us in a way we would never have expected. It's all really quite blurry but little pieces of that appointment stick out to each of us.
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| our first drawing of her heart |
For the next part of our appointment, we were led across the hall into a consultation room. It's kind of exactly how you picture it in the movies -- minimal "decorations", an easily cleanable stiff couch, small table and a couple of chairs. As we waited for the doctors to come in, I felt myself becoming nervous but didn't really know why. After all, we were just waiting to hear that our baby's heart was totally fine and we would be dismissed back to our regular clinic for the remainder of the pregnancy...oh boy, how wrong I was!
The cardiologist and OB came in and got straight to business. They asked us to share with them our perspective as to why we were referred to their clinic. We naively told them how our baby is stubborn and didn't let the previous tech and doctor get clear images of her heart so we needed confirmation that her heart was healthy. I remember watching as the cardiologist's facial expression showed a hint of disappointment before becoming extremely serious. The next few words that came out of her mouth changed us in a way we would never have expected. It's all really quite blurry but little pieces of that appointment stick out to each of us.
One of my strongest memories of this day was looking at Bill and thinking how strong he is and how I couldn't believe how level-headed he had remained while talking with the doctors. I tried my hardest to keep my composure and not cry but it was too hard. I finally just let myself cry and I don't recall asking any questions. I was too stunned. Thank God Bill was taking in as much information as he could and asking questions because I was most definitely not!
Bill remembers this moment like this: It really felt like a ton of bricks. The next half hour was kind of a blur. The cardiologist drew us a picture and explained the diagnosis to us. She said our baby would need multiple surgeries. Oh, and try not to spend too much time on our own looking up the condition. Yeah right!
It was extremely hard to not get stuck in the "why us?" mentality. We had been through so much: several years struggling with unexplained infertility, two big surgeries for me, several failed rounds of IUIs, 1 failed round of IVF which resulted in an ectopic pregnancy and then finally pregnant with our rainbow baby. We honestly thought we "deserved" this pregnancy and we "deserved" to bring a healthy baby into this world. Thankfully, our selfish mindset didn't last too long and we knew in order to prepare for this new adventure we were going to need to shift our focus. We agreed to spend the next 2 days allowing ourselves to be sad, angry, confused and cry but come Monday morning, we were not going to let each other sink into a dark place because of our baby's diagnosis. We needed to continue to be excited and prepare for our little miracle's entrance into this big crazy world. We were being entrusted with an extra special baby and it was going to be our job to protect her.
After our appointment, we both called into work and started our weekend early. We needed time to begin to process everything. I distinctly remember being so grateful that I rarely call my sister since we usually text. I think the phone rang maybe once before Jessie had answered and she knew something was up right away. Talking with her while I drove home helped since, remember, Bill and I both had driven separately to the appointment. Sharing our "news" with the rest of our families and close friends was difficult. We remember dreading having to tell people of our baby's diagnosis. Often, they had more questions than we had answers to and it was exhausting trying to field all of them. We knew they were going to get on Google so at times we withheld information with hopes of not freaking them out even more. You guys, if I have any advice for you: STAY OFF GOOGLE! Seriously - get your medical information from medical professionals!! 😉
Our new team had engulfed us at the clinic had already started putting various services, appointments and whatnot into place. We made it very clear that we needed to speak with any and all professionals who would be working with us and our baby, including needing to meet with our child's soon-to-be heart surgeon --- still so hard to believe. We received so many hugs from everyone and at the same time, the sadness was met with hope. We left this office feeling so many mixed emotions but can confidently say, among them, was a feeling of being loved. We were going to be okay and our baby was going to be closely monitored. My former principal's staple phrase of "We got this" became a phrase I would say to myself daily just to remind myself that we were not in control and the only thing we could control is how we reacted to the cards we had been dealt. 💕
After our appointment, we both called into work and started our weekend early. We needed time to begin to process everything. I distinctly remember being so grateful that I rarely call my sister since we usually text. I think the phone rang maybe once before Jessie had answered and she knew something was up right away. Talking with her while I drove home helped since, remember, Bill and I both had driven separately to the appointment. Sharing our "news" with the rest of our families and close friends was difficult. We remember dreading having to tell people of our baby's diagnosis. Often, they had more questions than we had answers to and it was exhausting trying to field all of them. We knew they were going to get on Google so at times we withheld information with hopes of not freaking them out even more. You guys, if I have any advice for you: STAY OFF GOOGLE! Seriously - get your medical information from medical professionals!! 😉
Our new team had engulfed us at the clinic had already started putting various services, appointments and whatnot into place. We made it very clear that we needed to speak with any and all professionals who would be working with us and our baby, including needing to meet with our child's soon-to-be heart surgeon --- still so hard to believe. We received so many hugs from everyone and at the same time, the sadness was met with hope. We left this office feeling so many mixed emotions but can confidently say, among them, was a feeling of being loved. We were going to be okay and our baby was going to be closely monitored. My former principal's staple phrase of "We got this" became a phrase I would say to myself daily just to remind myself that we were not in control and the only thing we could control is how we reacted to the cards we had been dealt. 💕
*side note -- we managed to go through every single detailed (and frequent!) ultrasound without finding out that our little warrior was actually a princess warrior -- kudos to the amazing techs, doctors and nurses who helped us keep our goal of not finding out until birth!
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| on the spectrum of TOF, our baby was on the more severe side |
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