Tag: NIPT

in darkness, there is light

i want to start this post off by first saying thank you for all the love and support you all have shown me over these last few days. i was hesitant to share the last post, but you have shown me grace and i am so grateful for that.

now to go back to the weeks following my last post…

we just received the results of my NIPS blood test (i will touch on this more later) and it was time to start sharing the news of my pregnancy. after all, i was almost 14 weeks pregnant and people would start to notice a belly soon enough. truth was, i was in denial about it all, but mike and i both knew it was time.

Mike jumped right in. he would share the news of our growing family and simultaneously share the challenges we were facing. he may not have shared all the gory details, but from my perspective, it seemed so effortless to him. for me, i was worried and scared. i was afraid of how our families and friends would receive the news. would there be joy like there was with Landon? would we be distanced from friends because our lives were about to be so different, they couldn’t relate? i don’t know why i let this get to me, but it did.

in all the darkness, there was light and it all started when i began to share everything. first with our families, who, while they were heartbroken for our struggles, were the most receptive. each and everyone of them promised to love our next little boy just as much as they love our current one.

second with my friends. all i can say is wow. i never expected to feel so loved and accepted, but i did. not to mention, once i shared what was going on with our sweet baby, my world felt a little a less isolated. one friend had a friend go through the same situation. the next friend had a friend of a friend who walked this journey. and each one of those friends insisted i connect with them. at the time, i was sure if i was ready to do that. after sleeping on it for a couple days, i decided it couldn’t hurt to connect with others. this was the start of more light.

third, with Mike’s job opportunities. God may have thrown us a major curveball, but he was also giving us the tools we needed to help us navigate this new life. the same day we received the blood test results, Mike accepted a new position with the Atlanta Hawks. we were going home. well, my home. this would bring us back to the east coast and close to our families. we would have the support of our families without requiring a cross country flight and major planning.

day to day was still a battle, but there was light and it gave me a sense of hope i had been missing for the last couple weeks. to all our friends and family who sent sweet texts, cards, flowers, ice cream (you know the way to my heart), emails, messages, phone calls, etc., THANK YOU. from the bottom of my heart, thank you for truly making this girl feel loved. we have the most incredible village.

finally, i have to acknowledge my incredible husband for bringing us some light. we have had a blessed marriage, not without its struggles, but this was our first real hurdle. Mike has seen me at my best and at my absolute worst (this might have been it) and has loved me all the way through. he’s been our rock and i know we will come out on top of this.

don’t get me wrong, i was still in tough place. with all the love and support lifting us up, i was starting to see the light.

before i sign off, i want to address the medical side of things. at this point in time, we still did not have a true “diagnosis.” the NIPS is still only a screening test with a small margin of error. the test results were positive for down syndrome and klinefelters syndrome (the sex chromosome abnormality i mentioned in the last post). it is extremely, extremely rare for a baby to have both chromosomal abnormalities. the NIPS test is very accurate for detecting down syndrome, but less accurate for the sex chromosome abnormalities. we decided at this point in time, we would move forward with an amniocentesis to get a diagnosis and potentially rule out the klinefelters. the amniocentesis would have to wait until I was at least 16 weeks pregnant.

 

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my light

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.