congenital heart defects – 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.

three month update

hooray! today is the day our little brady bug turns THREE months old. how? i’m not really sure, but time is moving both at warp-speed and slow (hello long days). it has been a big month for brady and i am excited to share with you all where we are at!

new this month in terms of milestones – brady is SMILING! i pretty much spend all day trying to get those sweet little gummy smiles out of my little man. he spends more time awake during the day, which i love, and he has started to coo. my heart can’t handle it. these are little newborn things i never new i missed until now.

landon is still adjusting. most days he’s great with brady. he will want to help hold brady’s bottle and give him kisses. every morning, i can hear the pitter-patter of landon’s feet running to our room to find brady in his bassinet. sweetness. other days, however, it’s a smack to the face, poke in the eye, and whine kind of day. you win some and lose some. we are working on big brother skills, but happy to report we have mostly good days.

other things that are new this month have more to do with the medical side of life with brady. we had a slew of appointments and new doctors to visit. here’s the skinny on it all:

eyes: check. we are grateful we only have to go back for annual eye checks
ENT: check. ears look good, we will go back at 6 months for another hearing screen. we did do a scope to check on Laryngomalacia (aka floppy airway) which is very common in all babies. structurally all looks well, but we did see signs of irritation from reflux. this is something we are keeping an eye on.
swallow study/feeding therapy: we learned through a swallow study that brady has a risk of aspirating thin liquids 100% of his swallows. the barium test showed deep penetration into the airway with every swallow. when we moved to “nectar” consistency, we saw improvement with every swallow. currently, we are thickening feeds to nectar consistency and will re-test in 2-3 months. i’ll do a separate post on this process.
cardiology: this was the big one. brady has been doing so well and still is doing well. however, we have started to see all the signs and changes that we were warned about. brady is in the early stages of heart failure, but we are still able to manage it and schedule surgery “electively.” we started him on Lasix to help take some pressure off his lungs and heart. this should help with his feeding and overall well being. we also saw a small dip in his weight gain. he is still gaining, but not on his curve he had been on. we have 2 weeks until his next appointment to turn it around before we start talking about fortifying his feedings. i think we can do it! we are seeing some positive changes since thickening. his most recent echo showed everything exactly as it has been. the hole is still very large (almost 1 cm) and not getting any smaller. surgery is tentatively “scheduled” for July.
PT: brady started PT and we are working on neck control and range of motion. just in a few days of directed play and proper holding techniques, we have seen improvements. we are battling a flat head (his left side) because he favors looking left. odds are brady will need a helmet, but we are doing everything we can to fix it before we get to that point. he’s a strong little dude!

most importantly this month, he is still as cute as can be, sleeping like a champ (PRAISE), and stealing hearts everywhere!

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