feeding – Down Home with the Irrs

one YEAR update

in typical fashion, i have neglected the blog posts. between mike’s travel schedule, brady’s appointments, landon’s most epic 4 month long sleep regression, and the holidays, i just couldn’t get myself to stay up to write posts. not kidding, we were going to sleep at 9 every night….

here i am at 7:30 pm writing brady’s one year update almost a month late. whoop whoop!

first, let’s just get this out of the way – BRADY IS ONE YEAR OLD. how????? i don’t know, but mike would say it’s felt every bit of one year, ha!

in the last few months, brady has changed a lot. physically, he has gone from just starting to push up to sitting, to CONSTANTLY pushing up to sitting. it’s both adorable and frustrating when you are trying to change diapers, get him dressed or work on trying to crawl. the kid wants nothing to do with being on his tummy anymore! he’s started to army crawl and can pretty much get anywhere he wants to go with a lot of rolling involved!

if you follow us on instagram, then you know the rollercoaster that is brady’s feeding journey. brady has feeding therapy once a week and it’s by far our biggest challenge. we take a few steps forward and a few back. feeding is more challenging to see progress and sometimes this momma needs that progress to keep it up. however, he has definitely made progress in the last few months. brady is moving on from purees to soft solids. he’s showing interest and is not gagging or choking as often as he was before. this is huge! i pray he can continue to make strides in the right direction with this all.

speech is also a major challenge for brady. speech therapy is something that will be in his life forever. brady is not babbling much and does not have any words just yet, but he’s vocal, loves to “talk” and makes his voice heard when he wants to.

in other news, i officially sent in brady’s katie beckett (medicaid) application and we are praying and praying for an approval soon. we hit a small bump in the road and the medical review team requested more paperwork. our hope is the updated paperwork is the final piece to the puzzle and we can get an approval! this is incredible important for this calendar year because the number of therapy visits brady gets per year, will not be enough. after those visits are used, it will be up to us to pay for everything totally out-of-pocket. with katie beckett, medicaid will take over those overages when we reach our private insurance limit.

monthly update: eight months

brady is officially eight months old (plus eleven days, because life) and i am starting to freak out. we are closer to him turning one than him being born and it’s really starting to hit me. this month was a big one in some ways (heart surgery), but also a slow one because we were waiting for surgery, had surgery and were recovering from surgery.

brady started sitting up unsupported (he still splats occasionally) and more importantly, he had his heart repaired!!!! he has a WHOLE heart and my heart couldn’t be happier for him.

heart surgery was a big hurdle and one we are happy to have behind us. i can’t wait to share that story with you soon. brady rocked it and rebounded even stronger than he was before.

during this month, brady found his feet and cannot stop playing with them all the time. it might be the cutest thing ever. he also expanded his solids palate and likes mostly everything. we should have feeding therapy set up within the next month and see how he continues to progress in the solids world.

landon and brady continue to be best buds. seeing landon love on brady and miss him when he’s napping is the sweetest. to think i was so worried about their bond before brady was born…. silly me.

the biggest milestone for me during brady’s eighth month…i stopped pumping so much. heck yes!! stay tuned for more of this in his nine month update.

summer break: 5, 6, and 7 month update

hey y’all. i’m back. after a 2ish month hiatus from the blog (aka summer break), i thought it was time to give it some love. this post is all about months 5, 6 and 7 – the months i am calling the waiting months. the months we spent waiting for brady’s heart surgery to come, attempting to keep him healthy, failing at that, getting surgery postponed 9 more weeks, struggling with bottles, feeding and weight gain, and finally ending with surgery (and summer).

month 5: brady celebrated landon’s second birthday and my first mother’s day with my two nuggets. he started giggling more, smiling with his entire body and getting stronger and stronger in PT. we took his first trip to the beach (and really first trip anywhere). we attempted to keep him healthy and ready for surgery that lingered just on the horizon. month 5 was a big one, but we knew (or thought) month 6 would be even bigger.

month 6: heart surgery month. not exactly. i know i mentioned it on instagram, but we were prepped and ready for brady’s surgery. we planned a last minute baptism, attempting to fit it into the schedule with most of our family. we had family lined up to come in town and help with landon while we would be in the hopsital with brady. then boom, no surgery. i knew brady had caught a cold the week before. i was emailing with his cardiologist wondering if i needed to speak up to the surgical team or not. we decided to wait it out and see if his body could clear it before surgery. no dice. one nose swab test later and positive for rhino/entrovirus. no surgery. what we thought would be a 6 week bump, turned into 9 weeks thanks to school aged kids planning elective surgeries during the summer months. after this, we decided we wanted to live a little bit. we continued to struggle with bottles, so one day we tried to nurse and he took to it! we went from exclusively bottle-feeding/pumping to nursing after a 5.5 month struggle. things were looking up a bit, until we learned he was not gaining weight. between brady’s heart condition and the calories he burned nursing, he just couldn’t keep the weight on. back to bottles….

month 7: living a little bit meant we were finally going to take the trip this summer that we missed out on before surgery. so we went to connecticut to visit mike’s family, have brady meet one of his great-grandmas and his great-aunts. he took his first plunge in the pool and officially became a rolypoly. he would literally roll straight across a room if you put him down! we also started brady on solids! month 7 was a big month for him. solids started off okay, he pushed out more than he was taking in, but he didn’t hate it which was huge! brady also finally got fitted for his helmet to correct his plagiocephaly (this will be a separate post) and took to it just fine. it’s a little hot and sweaty in the georgia heat, but like everything else he encounters, just smiled his whole way through it. he looks cute as ever in his helmet too. as we continued to live life and move through more weeks of waiting, brady continued to get stronger. he started to prop sit and impressed his pediatrician with where he was at developmentally.

month 8 update is just around the corner! this little bug of ours is truly amazing and continues to surprise us with his strength, love and smiles everyday!

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.