the dark days

editors note: this post is lengthy. it is a completely, transparent, honest recollection of my days following the first sign of bad news. i am embarrassed by many of my thoughts and emotions, but i said i was going to be honest when i started this blog. i can only speak for myself, so i briefly touch on Mike throughout these days. please know, this is NOT how i/we currently feel. we have come a long way since these dark days.

still in shock from the appointment, we finally got Landon to sleep for his afternoon nap and have a brief moment of reflection. we hugged and held each other for what felt like an eternity. i was hoping it was all a bad dream and i would be waking up from it soon. i decided to run out to grab takeout for dinner, because there was no chance i was going to be able to focus on putting together a meal for the evening. i was alone in my car when i received a call from my mother-in-law and that was when it all really hit me. something was wrong with our baby.

the tears started that afternoon and never really stopped after that. same with the flood of questions, fear, doubt, worry, confusion, etc. i was truly grieving. grieving the life i had once pictured for our future – our marriage when we would be empty nesters (likely not a reality anymore), the future for our family and kids, what that future would look like, what our family would look like, what opportunities our children would have in life. the hopes and dreams i once had, all seemed to fade away fast. i grieved it all.

in those initial moments, i was confused and angry with God. we are both very faithful people, but i started to question it all. how could God want this for us? how could he want this for any child? what is He trying to show me? what did i do to deserve this?

in the midst of all the emotion, there were real decisions that needed to be made. how were we going to proceed next? we had three days to decide what type of testing to do. we dove into researching the options to make the best choice for us and our baby. when we left our appointment on Thursday, the genetic counselor was pushing for a CVS procedure (invasive procedure with a risk of miscarriage, but is a true diagnosis) over a noninvasive, blood test (NIPS) that was not diagnostic, but pretty accurate in screening for the chromosomal abnormalities. the genetic counselor was pushing the CVS to make sure we had plenty of time to decide how we would proceed with the pregnancy should we receive a positive diagnosis of chromosomal abnormality. translation: if we would terminate or not. i was NOT prepared for this idea. neither was Mike. i think it hit us both like a semi-truck. it was never in our hearts or thoughts, but now we were faced with the reality to discuss it.

chromosomal abnormalities come in a wide range – trisomy 13 & 18 (typically not compatible with life), trisomy 21 (Down syndrome), and sex chromosome abnormalities (in the grand scheme of chromosomal problems these are not hugely impactful on developing life). where our little baby would fall into these categories, we did not know. did we want to know now, so we would not be left to wonder for days? or do we keep our baby safe for as long as possible and endure the wait?

by monday, we had decided no matter what was going on with our baby, nothing would change the course of this pregnancy. we met with the second genetic counselor and decided to opt-out of the CVS procedure and do the non-invasive blood test. this genetic counselor provided more insight to my blood work and said it was more consistent with a trisomy 13 or 18 case, rather than a Down syndrome case. truthfully, we did not know what to make of this news, but knew we had more research to do. a prick to the arm later and we left with more uncertainty to wait for the results.

the waiting game is the absolute WORST. no matter what the situation – job interview, medical tests, a date to call you back, buying a house, etc. in the period of waiting, you are met with anxiety, fear, sleepless nights, lack of interest, appetite, and STRESS. this was our reality for the next 7-10 days. i would be sitting and playing with Landon, when i would be overcome with sadness and start crying. i would look at him and wonder what this meant for his childhood. would he only know hospital and doctor visits for his baby brother or sister? would he be as carefree as a child should be? would he have the same opportunities as others or be hindered by what is going on with the family? suddenly, i would end up in a dark spiral of thoughts. all valid, but all unknown. only God could answer these questions.

thankfully, i was not alone during this time. Mike took time away from work to focus on our family and our mental health. he was grieving like i was, we just grieved in different ways during this time. some days he was the strong one and others it was me. some days I could feel confident trusting in God’s plan for our family and others I was a total mess, filled with doubt. it was truly a rollercoaster of a week.

to add more fuel to the fire, this same week of waiting for updates on the health of our baby, Mike was in the process of renegotiating his contract. were we staying in California or moving away? between the work stress and baby stress, we were ready to explode. all the uncertainty was placed on our shoulders at one time. we were being tested as parents and partners.

God has a funny way of working, though. after all the uncertainty with baby, He opened up an opportunity for Mike to return to Atlanta. that meant, potentially moving back to my home and have the love and support of our families nearby. it’s like He said, “i may have given you a lot to handle, but i will help make this easier to manage.” the Atlanta opportunity was a total God wink.

on Monday, July 9, 2018, we learned the results of my NIPS. positive for Down syndrome (90% chance) and much to our surprise, positive for a sex chromosome abnormality. we weren’t planning to find out the gender of this baby (just like we had done with Landon), but we had questions about the sex chromosome abnormality that could not be answered without us finding out. we are having another boy!

in my next few posts, i’ll touch more on the subsequent days, telling our friends and family, and the continued grieving process.

 

the day our lives turned upside down.

the first time our lives turned upside down was when Landon was born. the second time, it was June 28th and i was freshly 12 weeks pregnant. we were on the verge of starting to break the news to our friends and extended families that Landon would be a big brother. up until now, everything was pretty textbook. baby looked healthy, had a strong heartbeat, and was developing as expected. overall, i was feeling pretty good – minus some nausea and a few food aversions.

we were still living in California at the time and in California, the state pays for a prenatal screening program for anyone who would like to opt into the additional testing. for me, and us, it wasn’t something that my doctor strongly recommended we do given my age and clean family histories. the chances of a chromosomal abnormality were extremely low. however, we did the screening when i was pregnant with Landon, so we decided we would do it again. best case scenario, it was an extra ultrasound and chance to see our baby. worse case scenario, we would learn about potential risks that we would have time to educate ourselves on before the baby is born.

we sat in the exam room at maternal fetal medicine, Landon in tow because our babysitter wasn’t available, watching the sonographer work her magic and show us our baby. baby was happy, moving around like crazy, and made it a bit challenging for the sonographer to get the measurements. we thought it was pretty cute.

during this visit, the sonographer measures the fluid space between the neck and outer dermis. in combination with blood work done before the exam (and eventually after), they use algorithms to determine your baby’s risk of a chromosomal abnormality.

after the sonographer wrapped up her measurements of baby, we waited for the doctor to come in and deliver the results of the first two portions of the screening, the blood work and NT ultrasound. Landon was getting restless, as it was starting to get late for his afternoon nap, but we fully expected to be out the door in ten minutes with a sleeping baby in the car. that’s when the doctor arrived to deliver the results.

all I remember him saying was “i wish i had different news to share with you, but unfortunately your screen came back positive. high risk for chromosomal abnormality.” we both sat there stunned. in shock. not sure what to ask or what to say. there were no tears (yet) and i thought i was going to wake up from this bad dream at any moment. i was in disbelief that anything could be going on with our baby. we were told we would meet with the genetic counselor next before we would be on our way.

in the meeting with the genetic counselor, we were fighting our restless 14 month old and our emotions. we learned that our baby’s neck measurement was 6mm and the threshold for “normal” was 3mm. we learned my blood proteins were also very low for the normal range. we were told we now had a 1 in 5 chance of our baby having down syndrome (trisomy 21), trisomy 13 or trisomy 18. we were given all the information we needed to decide the next course of action we wanted to take, aka what further testing we wanted to do to learn more about what was going on with baby. after all, this was just a screening test that could have resulted in a false positive.

we took our information, uneasy emotions, and restless toddler as we exited. our next step was another meeting 4 days later for further counseling and testing. until then, we needed to process, pray, and research. needless to say, we waited to share the news about baby #2 until we had a better handle on all the unknowns.

the next 4 days, and subsequent week, were some of the darkest days of my life.

 

 

jumping in.

hi. if you are joining me here, you probably just read my instagram post, or heard from a friend, or from me, Mike or my family about this crazy idea of mine to start a blog. truthfully, this is something that has been on my heart for quite some time, ever since we learned the initial shocking news about baby #2. and truthfully, it’s very scary for me to share my life with the world, so i am jumping in head first.

if you know me more personally, you know i lay awake most nights with thoughts and feelings running through my head. i decided, for me, that it would be most helpful and therapeutic to get them out, to make a journal of sorts. and that is where this blog was born – 2 am, awake with my feelings.

my hopes and goals for this space are:

  • to provide a place where friends and family can stay up-to-date with our journey during this pregnancy and into parenthood with two under two
  • to be an advocate for our baby and share resources we have found helpful
  • to connect with others walking a similar path
  • to *hopefully* ease my mind (and get a little more sleep at night)

if you happened here by chance, or just have no idea what i am talking about, my name is Stefanie. i am recently 30 and currently pregnant with our second baby who has been blessed with an extra chromosome. it’s extremely rare for my age, but there is a 90% chance our baby will have down syndrome. we will know more definitively what is going on with baby in the coming weeks. more on that later.

in the meantime, i ask that we keep this space positive and full of prayer. if you know anyone who is sharing in this same journey, please share this with them. feel free to comment! i would love to connect with everyone.