doctor appointments – Down Home with the Irrs

2 month update

y’all. brady is already TWO months old! that is so wild to me. it feels like yesterday we were coming home from the hospital. i know time flies, but man is it flying by faster this go around. i wanted to share a quick update on where we are with our little brady bug.

sleep

now that we are doing well in the weight gain department, we were given the clear to let him “sleep through the night.” AMEN. because brady is actually a pretty good sleeper. most nights we are doing a 10:30/11 PM dream feed and little man sleeps until we wake him up at 7:30 AM. i know, i know. we are very lucky with this. from my non-scientific research (and poll of other DS mommas) it seems to be a common characteristic of our babies. i think the combo of his diagnosis and VSD makes brady a champion sleeper.

feeding

bottle feeding continues to go well. i am still “exclusively pumping” with hopes that he will nurse. basically, we do a bottle, attempt to nurse, then i pump. he latched a couple times and stayed put for a good minute. it wasn’t long enough to transfer much milk, but it is progress and it keeps me hopeful that we might be able to get there and i can kick the pump. in the meantime, pumping it is.

we do have some concerns that he might have silent aspiration/reflux. when his bottles are not going well, he is usually exhibiting discomfort. his eyes water and get red blotches around them, he sneezes, he pulls off the bottle frequently and may spit up. because of these warning signs, we will have a swallow study done at the end of the month.

doctor appointments

after our visit to the Down syndrome clinic at Emory, we added a few more specialists to the rotation. brady will see ENT and ophthalmology this month in addition to our regular pediatrician and cardiologist.

ENT will check his ears in more depth and also take a look at his breathing. brady frequenting makes “squeaky toy” sounds when he is flat on his back or sometimes while eating. this is pretty common with all babies, but sleep apnea is very common with Down syndrome. i am not at the point of requesting a sleep study yet, but we will see how the initial ENT visit goes.

he will also get his second RSV shot this month. the RSV shot will go on pause until “RSV season” picks up again in the fall.

early intervention/therapies

brady had his initial evaluation with georgia’s early intervention program Babies Can’t Wait. this will definitely be a more in-depth post at a later date. sharing the good, the bad and the ugly. until then though, here is what we know. brady is delayed, which we expected. a case manager is assigned to us and will begin working on setting up the various therapies he qualifies for at this time. it will like be PT and OT to start, but we will see.

big brother

landon is adjusting to being a big brother pretty well. he thinks it is so much fun to “hold” brady and we get to watch some really sweet kisses exchanged and gentle pets/hugs. landon even likes to “help” me feed brady and change his diapers. however, i play defense 90% of day. landon will go from a sweet kiss to a swift slap on the face and poke in the eye. man. he is still learning and very much a toddler.

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

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!