cutest pumpkin in the patch

happy Friday y’all! we are gearing up for a fun, but wet, weekend with my brother-in-law and sister-in-law. i was hoping to hit a few fun fall spots, but looks like we will be playing everything by ear due to the weather.

first, i want to say thank you to everyone who read my last post and reached out to me with recommendations and advice on the special needs trust. we are going to figure out some time we can sit down with an expert and really understand what we need to do. now we just have to find that time….

this past week was a busy one, to say the least. Mike was away all week and weekend, so i had to find some things to keep us busy (read distracted) so we didn’t have time to miss him too much. we kicked it off with a trip to the pumpkin patch with my mom, while the rest of the men in the family celebrated my dad’s big 6-0. per usual, i was so excited to take Landon to the pumpkin patch, complete with farm animals, corn maze and hayride. needless to say, he was less than amused and only smiled when his snack cup went “shake shake shake” and he got to walk in the gravel on the way back to the car. typical. here’s a few pictures for proof

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unimpressed
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equally unimpressed, but snacks are life

we are still in the midst of molar teething, which has resulted in some very trying and tiring days for me. he’s getting better each day and dealing with the pain a little better too.

other things that happened this week – tours and interviews. i am happy to report we hired a part-time nanny and she starts next week! fingers crossed she’s everything we hoped for and Landon takes to her quickly. mama’s gotta work and get things done! we  toured two different preschools (we have a third tour lined up for next week). it feels good to get some of these things checked off my list. i also interviewed one pediatrician and have a second one lined up for next week. truthfully, i loved this first pediatrician and would choose him without interviewing anyone else. BUT i want to make sure i am thorough.

i am feeling every bit of 29 weeks pregnant lately. i am currently writing this with a heating pad on my low back because i literally cannot move. probably because i have been going 100 mph and cleaned our entire house yesterday, but it feels good to know it’s done and clean! also, i am happy to report i passed my glucose test (WHOOP WHOOP!) so i can continue to have my bowl of ice cream every night 🙂

it’s crazy that i go back to the OB every 2 weeks now. this means, we are close to the end. woah, woah, woah! slow down. we still don’t have a name, but we did add one more option to our list. we still don’t have anything cleaned out of the nursery, but i did order fun wallpaper for an accent wall (sorry, Mike). we still have no idea what we are doing. we are trying though. after a nice little push to spend time reading again, thanks to my beautiful and talented friend Ashley, i have picked back up with two books. one by Jen Jacob with DSDN and the other by a prominent self-help author who also has a son with Down syndrome. feeling like i can do this a little more than i was feeling yesterday.

still on my to-do list: pick a name, tour the hospital and NICU, pick a pediatrician, clean out the nursery, decorate the nursery, house projects.

NEW on my to-do list: connect with the local Down syndrome chapter, look into Gigi’s playhouse.

enjoy your weekend, friends! we will be spending it with all the Tia and Uncle snuggles for L, another Hawks game, and maybe a couple house projects. we should also carve L’s pumpkin too…. i’ll make sure this is top on the list.

 

third trimester

holy smokes. i am officially 28 weeks pregnant – aka entering my third and final trimester. WHEN DID THAT HAPPEN? the panic continues with the massive to do list, but i do have some fun updates from this past week.

first, on the pregnancy front. i took a bump picture. i really did it, finally. while we were watching the Dawgs lose on Saturday, we decided it was best to distract ourselves with sweeping leaves off the deck and taking a bump pic. this will not be the last time Landon sits on his little brother, but it is the only time it is allowed… (ps this was technically 27 weeks)

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first bump pic – 27 weeks

other pregnancy related things – i had my 28 week appointment and glucose test yesterday. i will say, this one was MUCH easier than my last. for some reason in Cali, i had to do the 3 hour test no matter what. there was not a choice for a 1 hour. but here, i get to start with the 1 hour test and see how those results go before doing the longer more invasive 3 hour test. i felt like a pin cushion though. i got both my flu shot and Tdap shot at this visit. my arms are sore! i now go back every two weeks to the regular OB and still on an every 5 week schedule to the perinatologist. i know this will change once we get closer to the due date.

the name, still up for debate. his nursery, still a storage locker and disaster. the house, still in shambles, but we hung curtains in our bedroom and bought new bedside tables! i cannot wait to get those in place and finish our room. oh! and my biggest accomplishment, i found stools for our island!!!!!! i have been down a deep, dark hole of online furniture shopping and couldn’t find anything i liked that was $350+ per stool. that’s insanity. but i am happy to report, the search is over. now i just need to get them and assemble them all.

on the childcare front – i have realized, i need to move my focus from MMO/PMO to  finding preschool options for Landon and accept that we will not be getting into anything school related until next year. we are too far down on wait lists and, let’s be honest, not enough people will be moving in the next 6 months to move us up. SO here’s what we are working on, a part-time “nanny” to help me 2 days a week and try to get Landon into a preschool for 2019-2020 (holy cow) school year. i have a lead on a promising nanny option! praying this will work out and we can schedule all the doctors appointments and therapies on these two days. AND now i won’t have worry so much about Landon bringing home bugs and getting little bug sick before heart surgery!

here’s my pregnancy/life checklist to work on: find a pediatrician, tour the hospital and NICU, find Landon a preschool, work on the nursery, continue with home projects/organizing.

also, i need to focus some research on insurance for little bug. i hear we will want to set up a special needs trust to protect him long term and keep his insurance coverage, but man this is all way over my head. sounds like we will be having talks with attorneys and financial planners in our near-ish future. if you have experience with this, please please please let me know! i appreciate any help i can get.

oh, and in case anyone is keeping tabs and wondering, yes, i am still eating ice cream every night. this is not an exaggeration, just ask my husband 🙂

 

the bug.

i am currently writing this post from the couch, eating ice cream, watching real housewives of dallas and resting my back. no judgements please. man, being pregnant the second time around while trying to wrangle an almost 30 lb, 17 month old is physically draining. this time around, my back is not loving me, so here i am trying to take a break while i have a house with endless to-dos staring me in the face.

here’s an update on where we are at this week. nothing new to report medically as it relates to little bug. i am officially 27 weeks. woah. however, little bug and i got hit with a big whammy of a stomach bug.

we enjoyed a wonderful visit with Mike’s parents and just finished afternoon at a tip-off event for the new season, when WHAM!, i was hit with a stomach bug.

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pre stomach bug happiness

at first, i thought it was food poisoning (because where would i have picked up this bug), but then 48 hours later Mike got hit. then, the worst of it, Landon woke up Tuesday night after vomiting all over himself and his crib. major panic for me and my momma heart. the little guy didn’t understand what was going on and we could not get him to stop throwing up. with Mike down for the count, i called in my mom for reinforcements so i could at least put him down and clean up the mess. THESE ARE THE MOMENTS I AM GRATEFUL TO BE BACK HOME!!!

sparing you all the gory details, but we ended up in the ER with Landon late Tuesday night to get him some zofran. poor guy just could not stop the sickness. after a dose of the meds, my little man was back to his usual self flirting with the nurses and smiling.

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all smiles for his first trip to the ER

 

it honestly took a week for our entire household to recover. i spent the next couple days sanitizing everything in sight. after both the physical and emotional exhaustion of the week, we decided to hop in the car with my parents and head to the beach for a couple days. a little fun in the sun is just what the doctor ordered! and the sweetest beach naps.

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and just when we thought we were all recovered, WHAM!, my mom got hit with the bug. this dang bug. i pray y’all do not get hit with this thing!

other life things going on this week other than being taken out by the stomach bug – the house is still in shambles. there is not a single room that is complete, but i will say i have some visions and plans that i just need to execute. little bug is KICKING a lot. he’s just happy as clam in there. we have not made any progress on the name front (just haven’t had time to think about it), but did make progress with pediatrician research and information interviews. i will keep y’all posted about that. i know i will feel more at ease when i choose a pediatrician.

emotionally, this week really took it out of me. i don’t know if it’s the extra focus on down syndrome due to down syndrome awareness month (which is incredible, so please don’t misunderstand me), or the buddy walk that took place in Atlanta last weekend, or just the result of being overly tired and physically exhausted, but i ended the week in tears. i am in a valley again for the time being. feeling totally unprepared for life with two under two, unprepared for a baby with special needs, unprepared to become a “special needs mom.” just overall unprepared and feeling majorly guilty. so i am trying to give myself some grace and trying to remind myself that this too shall pass.

my goals for this week – take care of myself a little more, keep calling preschools/parents morning out programs for Landon (so far on 3 waitlists…ugh), and embrace this pregnancy a little more. i may even take a bump picture…

 

 

 

a new season

this week has been another crazy week here at the irr home. we are entering a new season in many ways – a new weather season, a new life season, a new professional season. and all the new seasons are colliding!

at home, we are in a new season of life and homeownership. it’s been a busy week of more appointments and phone calls – calling repairmen, reporting claims for property damage (very minor stuff), buying all the equipment and essentials, and trying to completely unpack a single room (still working on this). we love our home, but man, it’s tough to keep up with it all while simultaneously juggling a toddler and a career that takes a very important member of our team away from us for the majority of the week. oh, did i mention we also have squirrels in our attic? flying squirrels to be exact. and one that managed to find its way into our wall just in time to scare me while Mike was away. hello homeownership and goodbye money! and a big OH, we also have an owl in our backyard. pretty cool, unless you have seen the Michael Peterson Dateline….i’ll just leave it at that…

a new NBA season has officially begun and i am not ready. i am never really ready for the season to begin, but this year really feels like it popped up on us fast. i don’t feel like we really had a summer off (probably because we have been a little busy) and that is draining on us all. it’s also a very strange feeling to be entering a season as the newbies. it was always great to see familiar faces and our NBA family after a summer apart, but now we are those people entering a new team and not really feeling connected at the current moment. i know time will change all of this, but with so many other aspects of life being in transition, it’s tough feeling when we will be spending so much of our time together and away due to the team. i will say i am hopeful! i am grateful to have met a couple incredible women who i know will help ease this transition and also grateful for an organization that really puts a large emphasis on family and support.

a new season of life literally began this week for Mike. we celebrated our favorite guy’s birthday and were lucky to be able to do so with both of our families. in this next year for him, life is really changing and we are embracing the opportunity to get another year together to see what is in store. we checked in with little bug at the perinatologist this week and all is looking great! he is measuring right on target and, other than his heart defect, looking perfectly healthy. thank God. i am now being spaced out 5 weeks between visits unless something changes.

i have been asked several times how i am feeling. physically i am feeling pretty good. i am exhausted, but to be expected. otherwise, pregnancy symptoms are minimal and all is well physically. mentally, i am feeling a bit unsettled. i am feeling unprepared for a second child, any child, let alone a baby with special needs. i am feeling guilty that i have not focused as much on this pregnancy as i did with Landon. i keep putting things off because i have “time” with the pregnancy and these other life matters have been more pressing. it’s officially time for me to stop procrastinating and get focused.

on deck for me this week – call around for interview appointments with pediatricians, focus on the name search (we have one we love, but i want to be 100% certain), look into Gigi’s playhouse in Atlanta, start figuring out what we need for baby #2. i should also start thinking about a design for his nursery… but that might be another week or two before i can really focus on that.

things i am thankful for this week: a healthy toddler, a healthy husband, a healthy baby boy growing inside me. my family, who continuously help us through this transition. Mike’s family who gave me a much needed break this week and helped us with more house items. a roof over our head, even if it’s filled with squirrels. a loving home. and a God who continues to provide for us.

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official birthday celebration pic before L’s shirt was stained at dinner…

the present: 24 weeks

hey! remember me? i know, i know. it’s been 10 days since my last post.

suddenly, life was moving at a rapid pace and i couldn’t keep up with it all. between the doctors appointments, closing on our new home, moving, a toddler, and work orders, i was exhausted. still am. but we are finally, mostly, out of boxes and resuming life.

here is the final “catching up” update to get you to the present: 24 weeks pregnant.

weeks 21-23 were exactly as described before. BUSY. we closed on our first real home! we couldn’t be more excited to be be homeownIRRs and create a loving, happy, healthy, home for our growing family. thanks to the help of my parents and brothers, we were able to get the house in a decent place within a week! now it’s mostly decorating and buying new furniture! wohoo! i’ll keep you updated on the home front once things are more settled.

with a new home comes all the necessary appointments and people to the house – aka appliance deliveries, pest control (ummmmmmm California spoiled me for the last three years), locksmiths, internet provider, etc. there was someone new here almost every day to get things up and running. now we are waiting on the final delivery, our washer and dryer. can you believe we have been living without one for over a week now? the laundry pile is HUGE and we are on our last pieces of clean clothes. my wednesday is looking like a day full of laundry…yipee.

somewhere in these weeks, i managed to sneak in an appointment with the pediatric cardiologist. we were referred to Sibley here in Atlanta and according to my research and network of friends, they are THE heart specialists. in the earlier ultrasounds, little bug was 100% showing a heart defect. we did not know the extent of that defect and needed to get the cardiologist to take a look to confirm what was going on.

here is what i knew going into this appointment. it is very common for babies with Down syndrome to have heart problems. i knew little bug had a VSD (hole in the heart) and potentially a much more serious defect called tetralogy of fallot (ToF: basically a combination of four defects present at birth – you can google more about it). i was hoping this appointment would give us a clearer picture of what to expect after birth in regards to his heart.

if you have never had a fetal echo done, word of warning, they are LONG. like 45 minutes of ultrasound long. just looking at the heart. tips: make sure you are hydrated and well fed before you go in there. i was not and almost passed out on the table while the sonographer was taking all the pictures….whoops. and i was solo at this appointment – thanks, NBA.

after a painfully long ultrasound, the cardiologist came in to review the pictures and look more at little bugs heart. after he had everything he needed, we met in a different exam room to go over the results. to my pleasant surprise, the news wasn’t all that bad. if you know me, you know that i worry a lot and typically prepare for the worst (i am constantly working on this).

our cardiologist explained very calmly and in much detail that little bug did in fact have a VSD. it is a large one that will require open heart surgery to repair, usually around 4-6 months of life. they want these little babies to get stronger and fatten up before they attempt surgery (when possible). most VSDs can close on their own (or sometimes people live with them without issue), but it would be extremely rare for this to happen for our baby given its size.  he also explained that he did not see any signs pointing to ToF or a larger problem. yahoo! good news from this appointment! we are not necessarily in the clear, but i am choosing to think positively and stay this course unless someone tells me otherwise. unfortunately, they really cannot confirm heart issues until an echo is performed after birth. i’ll go back to the cardiologist at 32 weeks for another check-in.

today, i am 24 weeks pregnant. physically feeling pretty good, except for the aches and pains from moving, chasing an almost 30 pound toddler and being on my feet too much over the last week. mentally feeling okay. i can’t say mentally i am great, but right now, i am hopeful and doing well in the land of okay. i can feel little bug moving everyday, which makes my heart happy. tomorrow i go back to the perinatologist for a growth scan, so i’ll know more then. there is still plenty of time for things to change in regards to little bugs health, but like i said before, i am staying in my lane until told otherwise.

today, and everyday, i am grateful for my two dudes and little one growing inside me. my family for all the love, support and help with the house and Landon lately. my friends, for continuously checking in on me. i am grateful that we have been blessed with the ability to buy a beautiful home for our family.

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love bugs

 

 

the waiting weeks 3.0: life changes

i’m still working hard to get you guys caught up to the present – 23 weeks. WHAT?! is this normal second pregnancy problems? time is FLYING and i haven’t taken a single bump picture… but first, back to weeks 18-20 aka the waiting weeks 3.0

anyone else a Thomas Rhett fan? the song Life Changes seemed to pretty much be my anthem then (and still now). never in my wildest dreams did i think our lives would be where they were/are.

Ain’t it funny how life changes
You wake up, ain’t nothing the same and life changes
You can’t stop it, just hop on the train and
You never know what’s gonna happen
You make your plans and you hear God laughing
Life changes, and I wouldn’t change it for the world, the world, oh no
And I wouldn’t change it for the world, the world, oh no

weeks 18 and 19 we found ourselves in a whirlwind of life, attempting to settle in. all of a sudden, we were under contract on a home and doing the necessary inspections to make sure we were 100% certain this was it for us. we were busy getting Georgia licenses and tags, finding new doctors for Landon and i (which is more challenging than it seems), and setting up those necessary appointments. we did get to throw in a quick weekend trip to Hilton Head, which helped recharge our batteries a bit. needless to say, waiting the 10-14 days for the amnio results was not that difficult.

we had already accepted the results from my NIPT prior, so we were really just waiting for a confirmation, a true diagnosis doctors would recognize. i had my first appointment with my new OB before the results came in. she was wonderful and caring. and for the first time this pregnancy, i did not feel like i was being treated any different than a mother expecting a typical baby. i don’t know why, but i cried at that appointment. it was probably a combination of life stress, emotions running high with this little bug, and just being hormonal. i promised her i would not cry at my next appointment… whoops!

the outcome of that appointment was exactly as i expected. i needed a referral to a new perinatologist where i would get my 20 week anatomy scan done to check on the health of little bug and continue to monitor the “abnormalities” found at previous scans.

a week later, we were in the perinatologists office for the ultrasound and armed with our amnio results. we are having a SupIRR baby. little bug is confirmed T21 and Klinefelters. i’m not sure if you have been keeping count, but make that a whopping 48 chromosomes to your typical 46. boom. he’s superhuman 😉 like i had mentioned, it is extremely rare to have both syndromes, but both can peacefully co-exist. the Klinefelters markers will most likely be overshadowed by the Downs and that is perfectly okay.

upside of the amnio results, now we had a diagnosis and doctors would stop looking at our baby with the typical lens and instead look at him in the spectrum of health related to these syndromes.

the 20 week ultrasound was probably the first time we went to the doctor and did not get any more “bad” news. little bug actually made some good progress! his growth was great! the signs of the brain abnormality seemed to go away (which was always a possibility) and the echogenic bowel was no longer present. PRAISE GOD! little bugs heart was still showing a defect, but this perinatologist felt more optimistic about it than our last. we were referred to a pediatric cardiologist for a fetal echo which would be done at 22 weeks (more on that later). all in all a good appointment!

Landon had his 15 month appointment (a little late), but 3 shots later, we were all caught up on life things at the moment.

i feel like i need a nap just from reliving this moment in time! looking forward to getting you caught up to the present. we’re probably one post away from that!

 

 

 

 

 

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 ❤

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thumbs up baby

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)

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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.

 

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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.