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.

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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.

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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.

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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).

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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.

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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….

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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!

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my first dive in to the deep end of the advocating pool

“you have to be your own doctor.”

i distinctly remember my mom telling me this. i was in college and my grandparents had been in the hospital (separate occasions). i remember all the things she said about them missing medications, doctors and nurses not reading notes or the charts thoroughly. i remember her saying she (and my aunt) had to tell THEM what was going on and correct their mistakes. i kept thinking, “wow. can it really be that bad?” and “how scary? i am glad they have you to be there with them.”

fast forward to today and i can 100% understand the “you have to be your own doctor” sentiment. to the best of my ability, i have to the biggest advocate for my children. i know this. i do this already in a number of ways, but preparing for brady’s heart surgery was the first time i had to really “fight for him.”

the healthcare system is all kinds of messed up. not getting into politics here because it really doesn’t have much to do with that. but i really think a lot of people don’t understand that you have choices. you don’t have to take what the doctor, nurse, scheduler or insurance company says as “fact.” truthfully, you shouldn’t. you should question them, research things on your, present your findings if they differ from your doctor’s perspective, request second opinions, etc. when it makes sense.

you should feel 100% confident in your doctor’s plans, approach, care, etc. we were NOT feeling this way after meeting with brady’s cardiothoracic (CT) surgeon for our consult. i will get to why in little bit, but i want to ask you a few questions first:

  • if you, or your child, needed surgery, would you feel comfortable waiting until pre-op day to meet the surgeon? (note: pre-op is generally the day before surgery)
  • if while performing the surgery, the surgeon had to remove a part of your (or your child’s) anatomy considered “non-essential” to successfully complete the surgery, would you want to know? or do you need to know?

noodle on these questions as i tell you our story and experience advocating for what we believe is best for brady and his health as it pertains to his heart surgery.

our cardiologist gave us the heads up – brady’s case had been reviewed and deemed ready/necessary to have surgery. we should be hearing from the scheduler to get something on the books in the coming months (this was april). right on cue, the scheduler calls to get brady’s heart surgery scheduled. i had done some research on the 3 CT surgeons at CHOA and had my heart set on one of them, but would have been comfortable with 2 of the 3. of course, as our luck would have it, we can only be scheduled with the one CT surgeon i know least about – dr. shaw. here is how that conversation went:

“are all of the dates you offered to us with dr. shaw?”

“yes.”

“are dr. kanter or dr. subi available at all?”

“no.”

“okay then. looks like we are going to have to go with dr. shaw.”

“great.” (lots of details said) “you will get to meet with dr. shaw on brady’s pre-op day to have any questions you might have answered. since brady’s surgery is on a monday, his pre-op day will be on the friday before. if his surgery date changes, his new pre-op will be the day before surgery.”

i’m sorry. HOLD THE PHONE. you want me to ask any questions i might have for the surgeon on the DAY BEFORE my son’s open heart surgery?? no. that’s not how this is going to work. it will NOT work for me. honestly, how could it work for anyone? if we are not comfortable with the surgeon, we need to have time to find one. the day before surgery does not give us enough time to adequately prepare and feel comfortable. back to the conversation.

“meeting with dr. shaw the day before surgery will not work for me. can we schedule a consultation with him as soon as possible?”

scheduler says, “oh yes of course! you can meet with him whenever you want. he does all consultations on tuesdays. let me pull up his schedule to see when we have his next available.”

why would they not offer this information to everyone? why do i have to ask? i can’t possibly be the only parent who feels this way, yet i bet most parents take the “day before” option because it’s the only thing mentioned or offered. this is one example of how the healthcare system is flawed.

side story: one of the many ways the down syndrome diagnosis network supports parents is with facebook groups specific to your child’s needs. enter in the most valuable group to date – DSDN heart heroes. this facebook support group is only for parents of children with down syndrome and a heart defect. i had just seen a post from another mom asking for good questions to ask your baby’s CT surgeon. i read the thread and hundreds of comments. one comment kept popping up on the post “ask the surgeon to keep the thymus.” i took anatomy in high school. i have no idea what the thymus is or what it does. so i google. here is what you need to know (Wikipedia explains it best:

the thymus is a specialized primary lymphoid organ of the immune system. Within the thymus, T cells mature. T cells are critical to the adaptive immune system, where the body adapts specifically to foreign invaders. … the thymus is largest and most active during the neonatal and pre-adolescent periods. by the early teens, the thymus begins to atrophy and thymic stroma is mostly replaced by adipose (fat) tissue.

sounds pretty important to me. especially with brady already having a weaker immune system. of course we want the surgeon to keep his thymus. duh! so glad i saw this and looked it up.

fast-forward a couple weeks later and we are at the consultation appointment with brady’s surgeon. i was armed with questions, but the most important question “can you leave his thymus?” dr. shaw plainly states, “i routinely remove it. in order for me to get the best view on the heart, i need to remove it.” we asked if he could leave part of it and he said he would “try.” red flag.

within 24 hours, we pretty much decided this guy was not going to be brady’s surgeon. i had read a hundred of parental anecdotes stating their child still has some or all of their thymus. they found surgeons who were skilled enough to keep it, so we would too. in the meantime, we had to do more research. we wanted to know if we were being crazy in wanting to fight for keeping his thymus. was there research to support its importance? do the other surgeons in atlanta practice the same way?

so it began. the research. the back-and-forth. the “fighting.” research will tell you just what wikipedia did. it will say that once removed, your body’s immune system basically compensates for the loss of the thymus (thus it being “non-essential”). however, there is no research on this topic specific to the down syndrome community. for us, if it is possible to be kept, then we want it kept. we called two different adult cardiologists for 2nd and 3rd opinions. called our own cardiologist and explained to him that we were not happy with dr. shaw’s answers or confident in his ability to perform the surgery the way we wanted it done. i explained to him that there were mothers in atlanta who had their child’s surgery done here and the thymus was left 100% intact. how could they have it done, but we couldn’t? someone was lying to us – the surgeon or these parents. we told our cardiologist, if it’s not done the way we want, then we are willing to travel to another facility to find a surgeon who can. end of rant.

our cardiologist is amazing. he came from boston children’s  – the number 2 hospital in the US for pediatric cardiology & heart surgery. he called old colleagues, spoke to every surgeon in atlanta, reviewed cases claiming to have the thymus kept, reviewed research on the importance of the thymus and the immune system. within 48 hours of our complaint, we had all the answers.

it is standard practice to remove partial or all of the thymus during open heart surgery. this is what surgeons in boston, atlanta, texas, etc. all subscribe to.

it is important for immune development and should be kept intact as much as possible, especially for brady.

our surgeon is capable of performing a partial thymectomy and will do so. it is in his notes, it has been said face-to-face to us and our cardiologist. they understand we are not messing around about this.

at the end of all of this, we felt the confidence we needed to feel in dr. shaw to move forward as planned for brady’s surgery. we won our battle. but this brings me back to my second question:

  • if while performing the surgery, the surgeon had to remove a part of your (or your child’s) anatomy considered “non-essential” to successfully complete the surgery, would you want to know? or do you need to know?

the answer to this question should be yes. but what i have learned in my experience is that it is actually no.

if we didn’t specifically ask about the thymus, no one would have mentioned to us that they remove it. they don’t mention it even after surgery. the CT surgeon’s goal is to successfully repair the heart, so they don’t talk about the thymus. this is why parents think their child has their thymus. parents think that because the surgeon never mentioned the removal of anything, it must still be there. wrong.

after messaging with a few other moms, they were horrified to learn when they went back to the surgical notes and records that their child’s thymus was removed. they had NO idea. a few of these moms don’t have to worry about the immune issues because their kids don’t have down syndrome, but it would still haunt me knowing it was never discussed or seemed important enough to do so. another example of the flaws in our healthcare system.

advocating is hard work, but you have to stand firm in what you believe. “you have to be your own doctor.” (i am becoming my mother ha!)

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your prize for making it through the whole post 🙂

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.

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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.

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