therapy – Down Home with the Irrs

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!

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.

three weeks.

happy three weeks, brady! it’s been a whole three weeks with our littlest dude and, boy, has it been a whirlwind.

things started off great with a breezy delivery, no NICU stay, and a discharge 48 hours after brady’s birth. what we didn’t anticipate was a two night stay at CHOA after only being home for 24 hours. short story is: brady turned blueish around his mouth after a bottle feeding. this is something we were told to keep an eye on with him and his heart condition. after my MIL noticed his bluish tint around his mouth (she’s the one who fed him his bottle), we called his pediatrician to get advice on what to do. turning blue is not something they take lightly and immediately sent us into the ER. thank God we only live 10 minutes away from the children’s hospital and literally dropped everything and went.

after initial examination, brady’s oxygen levels were great (this was my concern) and we thought we would be headed home. problem was his body temperature was low. too low. technically considered hypothermic (despite being in a heated home, wearing long sleeves, pants, socks, hat and swaddle). we were given warm blankets and instructed to keep him warm so they could retake his temperature after 30 minutes. thirty minutes passed and his temperature was actually lower than it was when we arrived. this triggered alarm bells for the on-call pediatrician. it could mean possible infection and they do not take that lightly with young babies. the pediatrician explained to us that we would be admitted to the hospital for a 48 infection protocol.

the nurses whisked brady away to start drawing labs. our sweet little bud was poked and prodded for a spinal tap, urine sample, blood sample and to put in an IV port. it broke us to see our 3 day old baby like that. all we could do at that point was hope and pray all the cultures would come back negative and infection free. unfortunately, that takes time and we were in the hospital regardless. brady would receive antibiotics as part of this plan until all the results were in.

we were elated when they discharged us and cultures were coming in negative. no infection!!! we left feeling like first time parents all over again. our little bug is just a more fragile baby than we were used to. brady’s size in combination with his underlying syndromes and inability to regulate his body temperature is what resulted in him turning blue that night. we learned that he needed socks, footed sleeper, mits, hat, and three swaddle blankets to keep him a nice level of toasty. healthy toasty. lesson learned! and as he continues to grow and gain weight, he will be better at regulating his temperature.

other than this scare, everything at home has been wonderful, although very challenging. currently, we are in the “gain weight and wait for surgery” stage with brady. everything is about getting him big and fat for his open heart surgery (which will come between 4-6 months). this means we are having to wake him up every 3 hours to feed him. i know this is not atypical of newborn life, but usually when you get back to birth weight you can move onto feeding more “on demand.” nope, not us. to say we are sleep deprived is an understatement.

to make it more challenging, brady will not latch. which means i am currently in an exclusively pumping stage of feeding him. i am trying to stay hopeful that as he gets bigger and stronger he will be able to nurse (or even after his surgery), but this EP life is TOUGH. so for all those mommas out there that have exclusively pumped for a year (or longer or shorter) i have mad RESPECT for you. it is TOUGH. my life has been attempt to nurse, bottle feed, pump, wash parts. rinse and repeat. alllllllllllll day long and all night long. one cycle can take an hour or longer to get through. all while trying to entertain and keep landon alive. thankfully, we have had help with L and other areas of life, otherwise we would not be making it.

mike went back to work after two weeks of being home with us. he leaves tomorrow for two weeks and i am not ready to handle all the middle of the night feeds solo. that has been tough, but like i said, we have had help. landon is warming up to his little brother. he has been so sweet with giving kisses, helping me hold brady’s bottle while he’s feeding and “sharing” his toys (aka throwing a ball at him). those are the moments that make me feel like we did the right thing.

we wouldn’t have survived these weeks without the help of our friends and family. to everyone who has brought us a meal, diapers, held the baby or just checked in on our mental well being, thank you. thank you, thank you, thank you.

on deck for us next: appointments. we have pediatrician and cardiologist appointments every other week. brady starts feeding therapy and the early intervention program (babies can’t wait) next week. i am realizing scheduling and rescheduling appointments will become a full time job!

all i can say is – brady is the sweetest and we are very much in love with our boys.