appointments – Down Home with the Irrs

a difference i wasn’t expecting

i intended to write this post for Brady’s one month, but here we are two weeks later and our little bug is 6 weeks old and NINE pounds! whoop, whoop! it’s crazy to think Landon was only few ounces smaller than this when he was born…woah.

i’ll kick off this post with all things medical for Brady. i have been getting a lot of questions about his appointments, so i figure i’ll clear that up and then move on into what has been on my mind and heart.

medical updates – Brady continues to do well with eating and gaining weight. his main specialist we see is his cardiologist to monitor his heart, breathing, and weight gain. surgery is still on the horizon, but as long as he is doing well, we will push it out as long as possible. that could mean 4-6 months, 9 months, 1 year, etc… this definitely drives my “planner” side a bit insane! the plan is no plan as of yet.

we are on a “typical” schedule with his pediatrician at this point. next appointment will be when he is 2 months. we graduated from heavy monitoring for now. we also are able to feed on demand at night, which means we are going 5 and 6 hour stretches now and feeling a little more human.

yesterday, Brady had an appointment with the director or the Emory Down syndrome clinic. it just so happens that the doctor is also the director of the new X and Y Chromosome clinic (side note: of all their patients, they have only one other little boy with both Klinefelters and Down syndrome). after her initial examination, we have been referred out to ENT, ophthalmology and swallow study. i had a feeling we were in a little calm before the storm.

we have our evaluation next week with Babies Can’t Wait and we will see which therapies Brady qualifies for. initially, we anticipate PT once per month, but depending on swallow study results, we could be seeing OT and feeding therapy more often. PHEW.

now on to what is really on my heart. it’s something that i had feared during my pregnancy, but never anticipated would be so different.

who does Brady look like?

with Landon, there was an overwhelming response of friends and family saying “he is a mini-Mike” or “he looks just like you!” or “i see so much of your family in him!” with Brady, there was hardly any of that.

our families, of course, made these comments and compared similarities between Brady’s features and our families/Landon. but from other friends? i can probably count on one hand the number of people who mentioned which one of us they think he looks like. when i think about that for too long, i get sad.

when i look at Brady, i don’t see Down syndrome. i know i am his mom and i am blinded by his adorableness and my love for him, but this was also something i feared while pregnant. will i look at him and only see Down syndrome? will i be able to see beyond his diagnosis?

it’s silly to me, now. so i do understand why it might not be as easy for others to see or talk about or feel comfortable mentioning to us. that is okay. i am here to educate, enlighten, and hopefully ease the discomfort so that your next interaction with someone in similar shoes as us might be easier.

here is what i can tell you about this topic: babies with Down syndrome do have some distinct facial features like almond-shaped eyes and a slightly flatter nose. however, babies with Down syndrome look more like their family member than they resemble one another. Brady WILL look like our family/his siblings. good thing i don’t have to worry about him inheriting a full blown DiLegge nose! HA!

if you need a little help seeing it, i encourage you to follow a few other mommas and kiddos on Instagram:

you will see just how much the little ones look like their mommas and dadas.

photos curtesy of Perfectly Bliss Photography

tests.

happy Tuesday, friends! i hope everyone had a wonderful Thanksgiving and survived the craziness of the shopping over the last few days.

our Thanksgiving was wonderful. Mike had the whole day off. like off, off. like did NOT have to go into the office for even just a couple of hours. it was very much needed and magical to spend the morning the three of us preparing to head up to my parents’ house for the DAY. because we can do that now. we can go spend a day, an afternoon, an evening, an hour with my family and i will never take that for granted.

this was the first Thanksgiving in 3 years that i did not have to cook a turkey, clean my house, and spend the week stressing about how we are going to fit everyone into our tiny little space. i still wouldn’t trade any of those Thanksgivings, but i was very grateful to show up, bring dessert, help with cooking and head home when we were ready. this was also the first Thanksgiving we were not planning the meal around a flight time because there was a road game the next day and Mike had to leave. BLESSINGS. it’s the small things in the irr household.

after all the calmness of Thanksgiving came the stress of black friday and cyber monday shopping. does this give anyone else major anxiety? i am a deal seeker. i hardly ever pay full price for something (unless i am shopping small) so this is when i like to get the majority of my Christmas shopping done. this year was more than just Christmas, it was all the baby gear we need to get, nursery items, home decor, etc. so i was feeling the pressure.

let me tell you…i failed miserably at the UppaBaby deal through Sam’s Club and this will haunt me forever. we need a double stroller and after much research and testing, we determined this is the best one for us. i had been waiting until black friday specifically to purchase it and BAM, i lost. no UppaBaby on sale for us. now i have to figure out how late i am willing to push this purchase because we have been spending machines lately with the house items and need to chill. i probably should buy newborn size diapers before i go buying a stroller. priorities.

other than the shopping over the weekend, if you follow me on IG and saw my stories, you have definitely seen the great green debate. i am starting to feel colorblind. what i see on screen, in store, on the swatch, is not what is coming out of the can. how can this be? after 5 samples, i am pretty sure i found the one. this week, on my never-ending list of to-dos, i need to paint and assemble little bug’s dresser. good news, my mom and i finished the wallpaper – HECK YES.

in all seriousness though, this week, we are facing a lot of tests. i will officially be 34 weeks pregnant and so begins my weekly testing. today starts with a biophysical profile (BPP) at the perinatologist and the week ends with a non-stress test (NST) with my OB. according to my OB, i should have my hospital bag packed now. praying that everything stays looking good and we have 5 more weeks until little bug makes his appearance. God knows i need all 5 of these weeks to prepare mentally and physically.

my in-laws get into town today and i couldn’t be happier to have the extra hands. i jam packed my week with appointments – so much so, that when the AV guy showed up yesterday to the house, i thought we might be getting robbed (because i totally forgot what day of the week it was and that i even made the appointment). only me. whoops.

on my list of to-dos: buy newborn diapers, a changing pad, figure out the stroller situation, finish the nursery, pack our hospital bag, paint and assemble the dresser.

next week to-dos: launder all of little bug’s clothes (aka Landon’s hand-me-downs), take out the bassinet, get the car seat ready, finish the nursery, finish the nursery, finish the nursery.

oh and at some point, i will decorate the house for Christmas and finish my Christmas shopping….

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 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.