trisomy 21 – Down Home with the Irrs

four month update

brady bug is officially FOUR months old. i can’t get over how fast time is going. i need it to slow down for a minute for my heart to catch up.

brady is a lean (not really), mean (definitely not), growing machine (this is accurate!). officially twelve and half pounds and thriving! he has been even more alert, smiling and even laughing a little. we love watching him work so hard to get stronger everyday.

he took his first vacation and beach trip this month. a few days to hilton head, south carolina. he was the cutest little beach bum and snoozed most of the afternoons on the beach. man, but packing up the car for this trip was a task. not sure we will be doing that again anytime soon. OR we have to go and stay for a week to make it worth it!

as for milestones, brady is pretty on track with a typical baby his age. i know this will change, but for now, we are appreciating every little win. his PT is very impressed with his work ethic and strength. my hope is he continues this progress to make recovery from heart surgery a little bit better.

speaking of heart surgery, we officially have a date. june 10th. we are both excited, anxious, and nervous for this day to come. excited to see him thrive and be free of the daily struggle to eat and breath. anxious and nervous for all of the reasons you would expect. in this last month, we have started brady on a diuretic to manage his heart failure symptoms, so we know it’s time. we will continue to pray for peace and strength as we prepare for one of the toughest days of our (and his) lives.

medically, everything else is status quo. still exclusively pumping. still thickening feeds. we hope after surgery, these things might change for the better as well. only time will tell!

landon continues to be the sweetest big brother (most of the time). he loves holding brady, helping him with tummy time, cleaning up his bottles, and “playing” catch. we are still working on landon understanding brady is little ha! landon also thinks it is hysterical when brady has the hiccups. it’s the small things, people.

we are loving this stage of life, though exhausted, and can’t wait to see what this next month brings.

world down syndrome day

today is officially world Down syndrome day! to celebrate our first official world Down syndrome day, we are rocking our john’s crazy socks and “nothing down about it” apparel for Brady. in an effort to continue to educate and bring awareness to Down syndrome (and Brady), i thought i would make today’s post just that, educational.

to start, here is a small list of Down syndrome facts:

Down syndrome is the most commonly occurring chromosomal condition
Down syndrome is a genetic condition where an individual has three copies of the 21st chromosome
Down syndrome occurs in people of all races and economic levels
there are three types of Down syndrome: trisomy 21, translocation, and mosaicism
approximately one in every 700 babies in the US is born with Down syndrome
80% of children with Down syndrome are born to women under 35 years of age
people with Down syndrome have an increased risk for congenital heart defects, respiratory and hearing problems, Alzheimer’s disease, childhood leukemia and thyroid conditions
life expectancy for people with Down syndrome has increased dramatically in recent decades – from 25 in 1983 to 60 today
Down syndrome is named after John Langdon Down, a british physician who first fully described the characteristics of the syndrome in 1866
heart defects affect approximately 50% of all individual born with Down syndrome
Down syndrome cannot be cured

next, i want to talk about the language we use to talk about Down syndrome and people with Down syndrome. i have learned a lot in this short 8 months. language as a whole has come a long way, but there is work to be done when it comes to talking to/about people with Down syndrome. i can honestly say i did not know this when we first started our journey during my pregnancy. my hope is that even if only one person reads this post, i have sent one more person out in the world more educated and equipped to help spread the world (and love).

the national Down syndrome society has an incredible one pager outlining the preferred language. here are the main points:

people with Down syndrome should always be referred to as people first
instead of “a Down syndrome child,” it should be “a child with Down syndrome”
avoid “Down’s child” and describing the condition as “Down’s,” as in, “He has Down’.”
down syndrome is a condition or a syndrome, not a disease. people “have” Down syndrome, they do not “suffer from” it and are not “afflicted by” it
“typically developing” or “typical” is preferred over “normal”
“intellectual disability” or “cognitive disability” has replaced “mental retardation” as the appropriate term

Irr_Newborn15 — Brady’s perfect “sandal gap” a common physical trait among people with Down syndrome

three weeks.

happy three weeks, brady! it’s been a whole three weeks with our littlest dude and, boy, has it been a whirlwind.

things started off great with a breezy delivery, no NICU stay, and a discharge 48 hours after brady’s birth. what we didn’t anticipate was a two night stay at CHOA after only being home for 24 hours. short story is: brady turned blueish around his mouth after a bottle feeding. this is something we were told to keep an eye on with him and his heart condition. after my MIL noticed his bluish tint around his mouth (she’s the one who fed him his bottle), we called his pediatrician to get advice on what to do. turning blue is not something they take lightly and immediately sent us into the ER. thank God we only live 10 minutes away from the children’s hospital and literally dropped everything and went.

after initial examination, brady’s oxygen levels were great (this was my concern) and we thought we would be headed home. problem was his body temperature was low. too low. technically considered hypothermic (despite being in a heated home, wearing long sleeves, pants, socks, hat and swaddle). we were given warm blankets and instructed to keep him warm so they could retake his temperature after 30 minutes. thirty minutes passed and his temperature was actually lower than it was when we arrived. this triggered alarm bells for the on-call pediatrician. it could mean possible infection and they do not take that lightly with young babies. the pediatrician explained to us that we would be admitted to the hospital for a 48 infection protocol.

the nurses whisked brady away to start drawing labs. our sweet little bud was poked and prodded for a spinal tap, urine sample, blood sample and to put in an IV port. it broke us to see our 3 day old baby like that. all we could do at that point was hope and pray all the cultures would come back negative and infection free. unfortunately, that takes time and we were in the hospital regardless. brady would receive antibiotics as part of this plan until all the results were in.

we were elated when they discharged us and cultures were coming in negative. no infection!!! we left feeling like first time parents all over again. our little bug is just a more fragile baby than we were used to. brady’s size in combination with his underlying syndromes and inability to regulate his body temperature is what resulted in him turning blue that night. we learned that he needed socks, footed sleeper, mits, hat, and three swaddle blankets to keep him a nice level of toasty. healthy toasty. lesson learned! and as he continues to grow and gain weight, he will be better at regulating his temperature.

other than this scare, everything at home has been wonderful, although very challenging. currently, we are in the “gain weight and wait for surgery” stage with brady. everything is about getting him big and fat for his open heart surgery (which will come between 4-6 months). this means we are having to wake him up every 3 hours to feed him. i know this is not atypical of newborn life, but usually when you get back to birth weight you can move onto feeding more “on demand.” nope, not us. to say we are sleep deprived is an understatement.

to make it more challenging, brady will not latch. which means i am currently in an exclusively pumping stage of feeding him. i am trying to stay hopeful that as he gets bigger and stronger he will be able to nurse (or even after his surgery), but this EP life is TOUGH. so for all those mommas out there that have exclusively pumped for a year (or longer or shorter) i have mad RESPECT for you. it is TOUGH. my life has been attempt to nurse, bottle feed, pump, wash parts. rinse and repeat. alllllllllllll day long and all night long. one cycle can take an hour or longer to get through. all while trying to entertain and keep landon alive. thankfully, we have had help with L and other areas of life, otherwise we would not be making it.

mike went back to work after two weeks of being home with us. he leaves tomorrow for two weeks and i am not ready to handle all the middle of the night feeds solo. that has been tough, but like i said, we have had help. landon is warming up to his little brother. he has been so sweet with giving kisses, helping me hold brady’s bottle while he’s feeding and “sharing” his toys (aka throwing a ball at him). those are the moments that make me feel like we did the right thing.

we wouldn’t have survived these weeks without the help of our friends and family. to everyone who has brought us a meal, diapers, held the baby or just checked in on our mental well being, thank you. thank you, thank you, thank you.

on deck for us next: appointments. we have pediatrician and cardiologist appointments every other week. brady starts feeding therapy and the early intervention program (babies can’t wait) next week. i am realizing scheduling and rescheduling appointments will become a full time job!

all i can say is – brady is the sweetest and we are very much in love with our boys.

brady’s birth story

it’s hard to believe my last post was at 37 weeks. i planned to write one before Brady was born, but took some time off with Christmas. then, all on his own, Brady decided to enter our world at 38 weeks 4 days. here is how that day went.

sunday, december 30 : my in-laws had just come in town the day before and we planned to use this day to get some things done around the house before it was too late. this included hanging the art and mirror in the nursery, taking down Christmas decorations, doing a load or three of laundry, packing our hospital bag and installing the car seat (better late than never). i remember looking at Mike at the end of the busy day and saying, “i just need you to do one more thing for me tonight. i need you to go install the car seat.” and THANK GOD we did!

monday, december 31 : i was woken up at 2:30 AM by contractions. this was not unusual for me these last few weeks. i would get one or two throughout the night that woke me up, but nothing consistent. the only difference this night is that they were relatively frequent – one or two every hour – making sleep next to impossible. i had flashbacks to Landon’s labor and started to get really anxious we were about to go down that road again.

my in-laws grabbed Landon in the morning and kept him pretty distracted while i was laboring at home. by morning, they were pretty intense feeling, but very inconsistent. some would be 5 minutes apart, then the next 20 minutes, then 15, etc. mike nervously headed into work and promised he would be back as early as he could. i reassured him this was not real labor, that this was very reminiscent of how Landon’s labor began. i told him i was going to take a bath to calm them down.

back story – Landon’s labor, the semi-cliff’s notes version : we were out in Cali at the time and had no idea what to expect with labor or delivery since it was our first baby. i began to have contractions 72 hours before being admitted to the hospital for delivery. they were the kind of contractions i had to breath through and couldn’t talk through. i would be hunched over the sofa with my mom rubbing my back and praying that the baby would just come already. when those contractions became consistent enough for long enough, we headed into the hospital. the first time – “sorry, ma’am, you are not in labor. you are having contractions and pretty consistent, but nothing is happening to your cervix so it’s not considered labor.” ummmm excuse me, what?! they asked if i wanted some morphine sleep so i could at least get SOME rest (i hadn’t slept in 24 hours). i declined thinking that if this is not real, then i have some MAJOR pain ahead of me.

we headed home and i laid awake all night with contractions. day two came – same charade. my mom is begging me to go into the hospital and i am saying, they told me not to come back until they were more intense. that night, we went back to the hospital to get me some medication so i could at least sleep. after being sent home again, this time with the drugs, i was able to get a little rest (aka 3 hours) before it wore off and the contractions came back with a vengeance. by morning, i was at my wits end. i told mike we had to go back and i would force them to admit me. i could not go through another day/night without sleeping and contracting all day. we head back in and to our surprise they tested me to see if my water had broken, and thank G it did, because that was a sure way to get me admitted! it would be another 48 hours before I actually delivered Landon, but that part of the process is another story for another day…. or maybe not since it was so traumatic.

anyway, point of all this Landon back story – THIS felt like the same pre-labor, labor. not consistent enough, not intense enough. they call it prodromal labor.

back to Brady’s labor : i figured they would sent me back home and i could not handle that all over again, so i chose to ride it out at home for as long as possible. the bath helped, it soothed things a little, but not enough to try to nap. i distracted myself as much as possible, but the contractions kept coming. again, i was bent over the couch, on all fours, etc. trying to manage the pain. i finally caved and called our doctor office to reach the on-call doctor. keep in mind it’s a holiday, so i had to go through a different answering service to finally get to the doc. he called me back very quickly and i explained what was going on and what happened during my previous delivery.

he agreed with me that it was like pre-labor and to try to relax, drink more fluids, and even drink a glass of wine (off the record). at this point, i happily obliged with the wine and it seemed to push the contractions back to 15 min apart instead of the 5-7 minutes they were before. i decided a hot shower was in order to keep things calm, however, that did not work like the bath did…

by this point, it’s 4 PM and contractions were coming 2:30 – 4 minutes apart and i had enough. i call Mike up to our room in a panic and tell him to call the doctor back and tell him we are coming in regardless. if it wasn’t real, i needed something to let me rest for the big day. if it was real, well then i would rather have a baby in the hospital than our bathroom floor. after talking to the doctor for 2 minutes, we all agreed it was time to come in.

we grabbed our bags, called down to my in-laws we were leaving and were out the door. thank goodness we only live 10 minutes away from the hospital and could be in there quickly. i definitely felt like that woman in the movies though…we get to the hospital and i am contracting every 2-3 minutes. i have to sit through the admission process (even though i did all the pre-admission paperwork, so someone tell me the point here…) and between contractions give my information to the woman. after that, they sit me out in a waiting area for the nurse. i am sitting between two other pregnant woman who are more visibly pregnant than i am and they are just straight up chillin’. meanwhile, i am trying not to cause a scene in the hospital lobby and banging my head into Mike’s arms with every passing contraction.

FINALLY a nurse comes to get me and we are off to the room. immediately i tell them i want fentanyl to take the edge off so i can try to rest (or nap) for a little bit (jokes on me). problem was, there was still more paperwork for me to sign and they had to draw my blood and send it off to the lab before they could give me any medication. the nurse decides to check me in the process of waiting and, SURPRISE, i am 4 cm dilated.

this was it, folks. real freaking labor. hallelujah!!! still waiting for labs, and laboring with contractions every 2-3 minutes, when the on call doc comes in to check on me. i had never met him, but he was exactly who we needed to be there at that moment – good rapport, witty, compassionate, brilliant, and experienced. he promised me he would not let our baby get stuck and he was going to come out on his own most likely without need for a c-section.

thirty minutes passes and i am hooked up to the fluids in anticipation of an epidural, when WHAM, i am 7.5 cm dilated. i look at Mike and say, “if that anesthesiologist doesn’t get in here in 5 minutes, i am going to lose it!” my body was shaking uncontrollably and i was on the verge of vomiting from the contractions and pain. the doc tried to talk me out of the epidural since i had done “the hardest part,” but sorry, doc, no can do! in the knick-of-time i got my epidural and could finally relax for a brief moment.

mike and i were so in shock with how quickly things progressed. total opposite of my first labor and delivery. our moms had arrived to the hospital with dinner (for mike) around 7:45 PM. mike literally left to pick it up when the doc comes in to check on me. takes one look at my contraction strip and says, “yup, it’s time to have a baby.” so calm and nonchalant. in walks mike, 5 minutes later and i say “babe, we are about to have a baby!” this all cracks me up now. how relaxed, yet not, the whole scene was. they start calling to prep the room and when the doc says it’s time. the NICU team and prep nurse hadn’t even arrived yet. one and a half pushes later, Brady entered the world at 8:14 PM.

both Mike and i were overcome with emotion. for me, it was both tears of happiness and terror. i was excited to meet our second son, but now i could no longer keep him safe and healthy. i didn’t hear cries at first which intensified my fear. mike was with him and the NICU team examining him (they arrived 1 minute after birth). i couldn’t see much, but i was getting thumbs up that things looked okay. the neonatal team decided he was adjusting well on his own that we were able to avoid the NICU and headed up to our postpartum room all together that night. with five minutes to spare on the clock, we turned the TV on in time to watch the ball (and peach) drop for NYE. the perfect end to our 2018. good thing we installed that car seat, huh?

30 going on 31…weeks

not my age. although, i am recently (ish) 30. i can’t believe it’s November. i can’t believe i am about to be 31 weeks pregnant. i can’t believe we are about to have another baby SO soon. between the holidays and many tasks left to get done around the house, we are going to blink and baby will be here.

in the last week or so, not a whole lot has happened pregnancy wise. i had two appointments, one with my regular OB and one with my perinatologist. i learned a lot of things from these two appointments – basically for the duration of my pregnancy, i will live at the doctor’s office. ugh.

there is a much greater risk of stillbirths with babies that have chromosomal abnormalities and they want to make sure they catch any signs of distress ASAP. so starting at 34 weeks, i will go to the OB once a week for non-stress tests and the perinatologist once a week for biophysical profiles. that’s two appointments a week until i deliver. at any point in time, they could be telling me i need to go in and have this baby. looks like i have to add packing my hospital bag to my list of to-dos in the coming weeks!

other things related to little bug and momming life – our part-time nanny started last week and it has been life changing. the first day went great! i was able to focus on things i needed to do around the house, get myself dressed without having to chase a toddler around while brushing my teeth and even got some work done (gasp!). the second day, Landon realized i wasn’t home and was overly tired which made for a tearful morning. i am hoping this phase will pass as he gets to know her more and by the time little bug is here, he’ll be excited to play with Ms. Mallory. we also picked a pediatrician and it feels great to have that sorted out. i hope my gut is right with this choice and we come to love him as the medical professional protecting our children.

life updates – our first halloween in the new house was a semi-success. i say “semi” because Landon was in a sour mood and was not at all interested in going house to house (i know he’s still young). instead, he just wanted to wander the street and stare at all the big kids in costumes. we also ran out of candy by 7:30 PM, soooooooooo now we know! our neighborhood closes off the street in front of our house so kids can roam safely. it turns into quite the crowd from neighboring streets and two costco size bags of candy just wasn’t going to cut it.

life lessons i have learned this week – i am not alone in my thoughts and feelings. the support from each of you has been incredible and i find comfort in knowing that we are going through a lot of this together. whether related to a baby/child or something totally different, there is a common thread between the struggles. i also learned that while your child is getting their molars, ALWAYS give Motrin at night even when you think they are doing better. the TWO nights i didn’t give L his Motrin, resulted in a 4 AM wake-up (the night before Halloween, so probably why he was cranky) and 3 AM wake-up just a couple nights ago. i am exhausted and definitely coming down with something from the lack of sleep. my goal, more Motrin and take naps 🙂

PS my friends from Cali are coming to visit this weekend to go to their first ever SEC football game. i couldn’t be more excited to visit with them, but also get back up to Athens to cheer on my Bulldogs!

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.

20180929-kop_03282 — 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.

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.

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.

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.

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)