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.

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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!

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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:

  1. Down syndrome is the most commonly occurring chromosomal condition
  2. Down syndrome is a genetic condition where an individual has three copies of the 21st chromosome
  3. Down syndrome occurs in people of all races and economic levels
  4. there are three types of Down syndrome: trisomy 21, translocation, and mosaicism
  5. approximately one in every 700 babies in the US is born with Down syndrome
  6. 80% of children with Down syndrome are born to women under 35 years of age
  7. people with Down syndrome have an increased risk for congenital heart defects, respiratory and hearing problems, Alzheimer’s disease, childhood leukemia and thyroid conditions
  8. life expectancy for people with Down syndrome has increased dramatically in recent decades – from 25 in 1983 to 60 today
  9. Down syndrome is named after John Langdon Down, a british physician who first fully described the characteristics of the syndrome in 1866
  10. heart defects affect approximately 50% of all individual born with Down syndrome
  11. 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
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Brady’s perfect “sandal gap” a common physical trait among people with Down syndrome

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.

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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.

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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?

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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.

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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.

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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!

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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 🙂