In case you missed the update about this pregnancy being considered high risk, you can read it here – What I haven’t said about my pregnancy. I’m going back to where I left off and doing bump progress shots, with more information about what we’ve learned along the way about our baby girl and her medical issue. All of these leading up to 33 weeks are written in past tense, just from what I remember was going on. I want a record for myself, for my little girl and to help anyone else who may find themselves in a similar situation.
January 9th – January 15th
How big is baby? She is the size of a papaya! And she’s approximately 10.5-11.8″ in length and 12.7-20.8 ounces. Her eyes are developing and she is starting to sleep in long stretches of 12-14 hours.
How I’m feeling? This was a big week for our girl, where we had our repeat anatomy scan and a fetal echo on January 14th. Both of these were at the maternal fetal center, so we saw a high risk OB. This experience kind of set the tone for all future medical interactions as we’ve been on this path, and I can’t say enough good things about the nurses, the technicians and the doctor we met with. We could really tell how much these individuals love their jobs, and love to help families. It was just really positive and amazing, which was so needed at that time since we did receive confirmation for duodenal atresia. Luckily, the echo seemed to be clear.
Since Down Syndrome is most commonly associated with DA, the doctor suggested we have an amnio or some kind of genetic testing. We were 100% on board with that because we wanted to be as prepared as possible, for whatever might be on the horizon. Luckily, that day they were able to get us in for an amnio, and we also met with the genetic counselor. She went over our family history with us, and mapped things out to find any markers or connections. We had a couple options other than the amnio, but we chose that because it has the fastest result and is the most accurate.
After that day was over, I had to be on bed-rest for 24 hours from the amnio so we came home and just rested. My mom had Ezra that day, and she brought him and some dinner over. All that was left to do was to wait to hear back our amnio results.
As a way to cope, we had both settled in our hearts that the amnio would come back with a positive Downs diagnosis. It was how we had approached things from the start when we first learned there was an “issue” and, really, we knew we would not be disappointed regardless. By the end of the week, we got the call back from the genetic counselor that our initial results were in (which is 99% accurate) and the baby showed no signs of any genetic abnormalities.
I remember crying after that phone call, for a number of reasons, which I’m not really prepared to talk about right now but our main emotion was relief that this little girl’s struggles seem to be isolated to one area. To be honest, I almost feel guilty even using the word “relief” – because a Down Syndrome diagnosis would not have been negative in our eyes. This issue is a complicated one, which is why I say I’m not ready to talk about it too much yet.
Any cravings or weird dreams? No and no. This was a stressful week, though I’m sure I probably did have dreams about what was going on.
Any other details? With the confirmation of duodenal atresia, things began to move fairly quickly. The day after the repeat scan, echo and amnio, I got a phone call from our local Children’s Hospital about scheduling an MRI and a second echo. The high risk OB had ordered these tests to isolate where in her GI system the issue was, as well as to just further confirm her heart was healthy. I also got a call from a nurse advocate who had been assigned to us, to help guide us through everything and to serve as a touchpoint through the process for any questions, concerns, etc. This guy has been a big source of stress relief for me, because I know I can call him at any time and ask any question – no matter how stupid it may be – and he’ll help me understand what’s going on.