Where do we go From Here

After learning about Stetson’s diagnosis we were flooded with questions and all kinds of emotions. We were told that we would from now on be working with a medical team, which included my regular OB, Maternal Fetal Specialist, Genetic Counselor, social worker, and a nurse and social worker from an organization called “Angel Watch”.    

Ultimately the team is there to serve us in whatever capacity that they can and what we may require. Of course all of this information was a lot to take in and process and of course with Thanksgiving underway it meant that we had both time to process but, also lack of communication with our team until the following week. 

Being in Park City with Levi’s family allowed us to have a positive distraction as well as opportunity to process our news.  I was met with both an informational mood and devastation and I swung through these states. At times I would randomly cry and think about how my belly felt different. My growing belly is now the only true place that my baby is with me. The thought, as soon as he arrives he may not even take a breathe is a tough pill to swallow. Its also tough to think as I get bigger more and more people will congratulate me, ask me when I’m due, if I’m having a boy or girl, if were excited, etc. It seems odd responding to those questions as if I get to take my baby home but in reality I wont be able to. 

I started formulating questions again. Preparing for the time that we would meet with the genetic counselor and our doctors. Of course this lead me to research online which is both a great and terrible resource all at once. At times I got a little bit of hope as I read survival stories and other times it made me devastated as I thought of my babies little body becoming swollen from fluid. 

When we got home from our trip I decided to once again create my list of questions for our medical team but this time I emailed the list to family. This way they could add to the list and I would be able to get my questions answered and theirs. 

Due to Covid 19 restrictions we met with our genetic counselor over the phone. I asked her what her degree is and what kinds of question she could respond to. I learned that her background is in counseling and genetic disorders meaning she is not an MD and couldn’t respond to any medical questions but she could help us understand genetic testing methods and results and help us navigate that aspect of the pregnancy.

We had approximately a dozen questions regarding amniocentesis and directed all these questions to her. We quickly learned that the world of genetics is very vast and very complicated. However, our goal is to provide Stetson with the best fighting chance he could possibly have. Unfortunately, it is very difficult to determine what that looks like especially because we don’t understand the whole picture of what is happening. 

Essentially what we gathered is  genetic testing whether in utero or afterwards (through autopsy) wouldn’t change Stetson’s chances of life. It simply tells us the cause of the Hydrops Fetalis, Hydrops isn’t a disease, it is a condition caused by something else (in our case more than likely genetic issues).  

The counselor was blunt in her responses but still compassionate. She could tell based on what we were asking that we desperately wanted a solution. She explained that Hydrops is a fatal diagnosis; it’s not as simple as just draining built up fluid. Our baby is building up fluid and we don’t know why and placing a shunt to drain it doesn’t mean that the built up fluid will stop building or that other organ function and development wont be compromised. In other words there isn’t a treatment, there is medical intervention that has no guarantee of providing Stetson relief. She also informed us that determining what genetic disorder doesn’t change how medical intervention would be carried out. His condition of Hydrops determines his chances of survival not the genetic disorder itself. 

At this point we felt pretty defeated and felt like although we got answers to our questions we were no closer to figuring out how we could possibly increase Stetson’s odds of life. The counselor informed us that although there are a lot of unknowns, making decisions difficult it also means there isn’t a right or wrong way to handle the situation. 

After our conversation with the counselor Levi and I decided that we wouldn’t go forward with the amniocentesis, as it will not change anything for Stetson at this point. For now we want to be ignorant to our chances of this happening again (which depending on the exact genetic defect could be as high as 25%). We don’t want to be discouraged in growing our family anymore than we already are. We may decided afterwards to do further testing and investigating to discover what truly went wrong, but for now we are going to table this unknown and focus on our goal of having Stetson be born alive. 

I had an appointment with my regular doctor to check for gestational diabetes after the holiday. This would be the first appointment I had with him after receiving the awful news from the specialist. Unfortunately, my doctor was in surgery so I met with the midwife instead. Although, the office was super apologetic I didn’t worry about it, Surgery is a pretty good excuse. Plus I selected this doctor because he is very flexible with natural births; if he is in surgery its pretty clear it’s an emergency C-section.  

While meeting with the midwife I could tell she had no clue about Stetson’s diagnosis. At first I was bothered by this but realized with the Holiday and with my doctor typically not being in the office at the beginning of the week, he probably hadn’t gotten to his faxes/notes yet. As the midwife was asking me questions about if were having a boy or a girl, if it was our first pregnancy or not, how excited we were, I just broke down crying. I told her what we found out earlier that week  “our baby has Hydrops and it makes these appointments really hard”.  The midwife actually started crying with me and was super apologetic. I actually appreciated her sensitivity and she informed me about resources the clinic could provide for Levi and I as we navigate through this journey. 

Levi and I have a lot to prepare for the next ultrasound with our specialist. We know that we need to advocate for Stetson regardless of the out come.  We continue to bear this burden not because it is bearable but because we have to. I’m so grateful for my little girl who reminds me everyday that we can have healthy babies. That we are not destined to have our family to end here. We know that she has other siblings waiting to come to this earth and we may never know how long or how short of a life we will have, but I know that Stetson was meant to come to our family. His life may be short and I pray that we will witness a miracle and he may be allowed to stay with us a little longer. Whatever the outcome, Levi and I have already witnessed many miracles as people have reached out and offered to help us in whatever capacity they can.  We feel a lot of love and support and are forever grateful to everyone who is following our journey and holding us up as we manage to carry on.