blog – Down Home with the Irrs

still here

hi, let me introduce myself again. i am stefanie and we are still alive and here. i apologize for being a bit MIA these last 12 days to be exact, but it’s been a bit nuts.

we have had a crazy 12 days jam packed with an epic visit from Cali friends, rain, rain and more rain, sleepless nights (thank you teething), sickness, doctor appointments for both L and me, and one long freaking road trip for mike. can you tell i am a bit salty about the road trip?

here’s my attempt at trying to catch you up on all the craziness. the last couple weeks started with a terrible three days of literally no sleep for me. between third trimester insomnia, the constant middle of the night bathroom trips, and landon’s teething, i could not get any rest. my body breaks down every time this happens and i get sick immediately. so i got sick. perfect timing for a big weekend of UGA football with friends visiting from Cali for their first ever SEC football game. good news, 60% of the people on this trip were sick. bad news, 60% of us were sick. but we had the time of our lives and it made me miss my Cali family SO bad.

after such a fun weekend, i needed to attempt to heal my body. sleep was necessary but not happening. mike left for one of the longer road trips and landon is currently not sleeping great thanks to his molars…. naturally, i get him sick in the process and Atlanta decided this past week was the perfect week for nonstop rain and 40 degree temps. who can keep an 18 mo old, sick toddler entertained indoors for 3+ days straight? anyone? please message me your tips.

even though our bodies were broken down, we did get some things accomplished around here. landon had his 18 month appointment with the new pediatrician who will also see little bug. it was great getting to know the doc a little more before going in for our first visit with bug. i think he will be a great fit!

i also had my 32 week OB appointment. my final “calm” appointment before the storm. next set of appointments include biophysical profiles (BPP) and non-stress tests (NST) every week. that’s enough to send my anxiety through the roof! looks like the hospital bag will be packed just in case. all is still looking good and normal right now!

in more fun news, my mom and i made more progress on the nursery. the accent wall is 4/5 of the way completed and has become quite the joke. i have literally had to order a new roll of wallpaper after each “nap time” work session. 2 sessions later and still need another roll of wallpaper for LITERALLY 21 inches wide of space. OH and if it couldn’t get any worse, the actual paper is only 20.5 inches wide, leaving us with figuring out how to make this work for HALF AN INCH. face palm. but we love it and it’s been really fun to see it start to come together. we also hung the curtains, which appear black in the photos from the lighting, but they are actually a dark green. this is going to be an accent color we use for the dresser.

4/5 completed

better shot of the green

more pregnancy updates – i am pretty positive we have decided on a name for little bug. YAY! this upcoming week i have another fetal echo to check on bug’s heart condition and we will tour the hospital/NICU. with the holiday chaos literally around the corner, it will be nice to at least know where we go when the time comes to deliver.

after all the rain, we have had two really gorgeous days and was able to escape with my little dude. we might both have runny noses and yucky coughs, but he loves to be outdoors and needed to make sure he practiced his hoop skills before dada came home. ❤

my focus this week is family time and Christmas shopping. anyone have particular black friday deals you are excited about? i’ll also be looking for baby gear we need for bug. aka a different baby monitor, double stroller, nursery decor, etc. second time mommas, send me your recs! i am all about finding a good deal, but also would love to know what you have found to be practical.

the waiting weeks 2.0: weeks 16-18

weeks 16 to 18 were filled with more waiting, but more “life.” here’s a look back at those weeks while we moved, prepared for an amniocentesis, and house hunted!

week 16: on july 27, we headed to our perinatologist in Oakland hoping to be able to have the amniocentesis done this day. i was freshly 16 weeks pregnant and just barely into the window of time where they can perform an amniocentesis. basically, they want the amniotic sac walls to be fused before they perform an amnio. this typically happens as early as 16 weeks, but is not the case for everyone. surprise, surprise, this was not the case for me.

the first half of the appointment consists of the ultrasound where the sonographer takes tons of pictures of baby to measure, track development, look for potential abnormalities or defects, and check if the amniotic wall has fused. then you meet with the doctor to go over the results. little bug (our nickname for this baby) was looking good and happy. per usual, he would not sit still for his pictures! then the doctor came in to talk through the results. things we learned this day: 1) i would not be getting the amnio unless we wanted to risk an unsuccessful procedure (we decided to return in 2 weeks) 2) there were a few areas of concern – there were signs of a hole in his heart, a potential brain defect, and a potential echogenic bowel 3) he was happy as a clam and gave us the thumbs up – like don’t worry mom and dad, i’m going to be okay 🙂 meet little bug ❤

it seemed like we were getting more and more bad news at every appointment. we had to keep in mind, however, that all of these potential health concerns were all considered normal for a baby with down syndrome.

week 16 was also filled with some fun things – house hunting! well, house hunting from afar. we looked at listings online from our agent and compiled a list of homes we wanted to see the following week when we arrived in Atlanta!

week 17: this week was a blur of life things. i think we toured almost 20 potential homes, striking out with them all. then we had a friend’s wedding in the North Carolina mountains. it was a much needed break from “life.” a weekend away baby-free (thanks to my father-in-law for keeping Landon), where we could reconnect with our east coast friends, relax, and semi-forget all of the stresses in our life.

we had a rude awakening back to reality after the weekend. Mike flew back out to California to handle the movers and returning the keys to our place. he flew back late Wednesday night to be at work bright and early Thursday. then i flew back to Cali on Thursday afternoon for my amnio procedure the following day. woof. this was a week!

week 18: week 18 started with me flying back to California for my amnio. due to insurance reasons, i had to come back to Cali. truthfully, i wasn’t too disappointed! we planned a girls weekend with my friends out there and basically had a weekend-long sleepover! besides the actual procedure part, it was a really fun weekend 🙂

the amnio. man, was i scared. there was the pain part that scared me… no pain medication or numbing creams to help with a needle going through my belly. then there was the risk to our baby that scared me. we already knew our baby had down syndrome (even though all the tests were not a true diagnosis), so was it worth the potential risk to baby just to find out the answer to the Klinefelters? i wanted Mike with me, but it just wasn’t possible.

one of my best friends stepped in for Mike and took me to the appointment and was my nurse for the rest of the day. the ultrasound showed the amniotic walls were fused and the procedure could take place. i think the entire procedure took all of one minute. it was definitely uncomfortable and not something i would like to do again. we had to wait two weeks for the results.

the rest of the day was spent relaxing and binge watching Bachelor in Paradise.

as with all things, everything seems to pile on at one time. we submitted an offer on a house the same day as my procedure (i did not see said house in person, but loved it from the pictures and trusted Mike to make the ultimate decision after he saw it) and went under contract the next day. life was definitely not slowing down for us anytime soon…

the waiting weeks

over the next few posts, i will attempt to do my best to get you caught up to the current (almost 22 weeks) stage in my pregnancy. we left off at 14 weeks, so here we go with the following weeks. i call them the waiting weeks.

welcome to the waiting weeks. weeks 14-16 of my pregnancy. they were weeks spent literally in waiting. waiting for more answers to be confirmed by an amniocentesis that could not be performed until week 16 at the earliest.

like i mentioned in the last post, we decided to go through with the amnio to confirm the exact genetic make-up of our baby boy. and again, like i mentioned, the blood test is very accurate in detecting Down syndrome, but not terribly accurate in the sex chromosome detection. given the results of the blood work, we just wanted to be absolutely certain. we were NOT denying that our baby had Down syndrome, but very skeptical that he also had Klinefelters since it’s extremely rare to have both.

back to the waiting weeks. these weeks were interesting. we were both still grieving, but now had to turn our focus (as much as possible) on the immediate need to move cross country.

we had approximately three weeks left on our lease and logistically needed to get things moving as quickly as possible. the tough part, waiting to find out from our moving company when the movers would be able to load our house. fortunately, our move included the packing service, so we were only responsible for packing what we needed for potentially (up to) 90 days. also fortunately, we were planning to move in temporarily with my parents while we house hunted (more on our house hunt later! i promised this blog would be snippets of our life and not only about DS 24/7). these last two blessings made things a little less stressful, but don’t forget we still have our 15 month old to worry about with all the adjustments ahead. move-wise, things were moving (haha) along slowly, but surely. life-wise. that was a different story.

life-wise, we started sharing with our friends that we were moving and it was a mix of emotions. i was not sure how much more i could handle on the emotion front. we made the most incredible friends in Cali. some of the best of our lives. they were more than friends to us. truly, they were family. when you are cross-country from your families and living in a world that revolves around basketball, where holidays really don’t exist, you learn to rely on one another. us women bonded together while our men were on the road or working, literally, seven days a week for 9 months of the year. we became sister-wives of sorts – cooking dinner for each other, holding babies for each other so someone could shower or take the trash out, drinking and laughing together through the long road trips, and checking in on one another when the earthquakes struck (TWICE WHILE HOME ALONE!!!!!). these goodbyes were tough and they barely had enough time to sink in. i cried pretty much the entire flight to Atlanta…and this is honestly not an exaggeration. to our Cali family, i left a piece of my heart there with each of you ❤

down syndrome-wise, i was making connections. i reached out to two “friends of friends” who had walked this path in super awkward texts and emails. i will forever be grateful to both women for being so kind, open, welcoming, non-judgemental and encouraging. you helped me (and continue to) through my mess of emotions and lengthy list of questions. thank you for your patience and thank you for opening my eyes to this beautiful community. we may not have met in person, but i felt less alone in just a few conversations and emails. one of the best pieces of advice i was given at this time was to continue to connect with women and families in our situation.

i was then introduced to the Down Syndrome Diagnosis Network and their private Facebook group for women expecting babies with DS. this support group has been one of the biggest helps in this journey. it’s a safe place for all the questions, worry, ugly feelings, doubt, fears, etc. each of our journeys are different, but one in the same and everyone in that group only wants to help and encourage. it’s the opposite of everything bad you read about the internet and i love it. if you are going through the same journey and have not connected with these women on Facebook, i encourage you to click the link here or on my homepage and get connected. i promise it is worth it. i have spent a lot of my waiting weeks reading the posts in this group and connecting with these women who are all in the same boat. i learned, for me, connecting with the DS community started to get me hopeful and feel excited again about this pregnancy and baby. this was the first sign of my mental/emotional health gaining some strength again.

we finished up the waiting weeks with all our necessities packed away in 6 suitcases awaiting our flight to Atlanta. with only a few days left, we headed in to our appointment with the perinatologist at exactly 16 weeks + 1 day hoping to see a healthy baby and proceed with the amnio.

stay tuned for an update from that appointment and the waiting weeks 2.0 (hint hint)

IRR-32 — photo credit: someplace wild (aka our amazing photographer and 2017 maternity shoot location)

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.

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.