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.
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!
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!)
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.
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!
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
Brady’s perfect “sandal gap” a common physical trait among people with Down syndrome
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.
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?
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:
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.
it’s hard to believe my last post was at 37 weeks. i planned to write one before Brady was born, but took some time off with Christmas. then, all on his own, Brady decided to enter our world at 38 weeks 4 days. here is how that day went.
sunday, december 30 : my in-laws had just come in town the day before and we planned to use this day to get some things done around the house before it was too late. this included hanging the art and mirror in the nursery, taking down Christmas decorations, doing a load or three of laundry, packing our hospital bag and installing the car seat (better late than never). i remember looking at Mike at the end of the busy day and saying, “i just need you to do one more thing for me tonight. i need you to go install the car seat.” and THANK GOD we did!
monday, december 31 : i was woken up at 2:30 AM by contractions. this was not unusual for me these last few weeks. i would get one or two throughout the night that woke me up, but nothing consistent. the only difference this night is that they were relatively frequent – one or two every hour – making sleep next to impossible. i had flashbacks to Landon’s labor and started to get really anxious we were about to go down that road again.
my in-laws grabbed Landon in the morning and kept him pretty distracted while i was laboring at home. by morning, they were pretty intense feeling, but very inconsistent. some would be 5 minutes apart, then the next 20 minutes, then 15, etc. mike nervously headed into work and promised he would be back as early as he could. i reassured him this was not real labor, that this was very reminiscent of how Landon’s labor began. i told him i was going to take a bath to calm them down.
back story – Landon’s labor, the semi-cliff’s notes version : we were out in Cali at the time and had no idea what to expect with labor or delivery since it was our first baby. i began to have contractions 72 hours before being admitted to the hospital for delivery. they were the kind of contractions i had to breath through and couldn’t talk through. i would be hunched over the sofa with my mom rubbing my back and praying that the baby would just come already. when those contractions became consistent enough for long enough, we headed into the hospital. the first time – “sorry, ma’am, you are not in labor. you are having contractions and pretty consistent, but nothing is happening to your cervix so it’s not considered labor.” ummmm excuse me, what?! they asked if i wanted some morphine sleep so i could at least get SOME rest (i hadn’t slept in 24 hours). i declined thinking that if this is not real, then i have some MAJOR pain ahead of me.
we headed home and i laid awake all night with contractions. day two came – same charade. my mom is begging me to go into the hospital and i am saying, they told me not to come back until they were more intense. that night, we went back to the hospital to get me some medication so i could at least sleep. after being sent home again, this time with the drugs, i was able to get a little rest (aka 3 hours) before it wore off and the contractions came back with a vengeance. by morning, i was at my wits end. i told mike we had to go back and i would force them to admit me. i could not go through another day/night without sleeping and contracting all day. we head back in and to our surprise they tested me to see if my water had broken, and thank G it did, because that was a sure way to get me admitted! it would be another 48 hours before I actually delivered Landon, but that part of the process is another story for another day…. or maybe not since it was so traumatic.
anyway, point of all this Landon back story – THIS felt like the same pre-labor, labor. not consistent enough, not intense enough. they call it prodromal labor.
back to Brady’s labor : i figured they would sent me back home and i could not handle that all over again, so i chose to ride it out at home for as long as possible. the bath helped, it soothed things a little, but not enough to try to nap. i distracted myself as much as possible, but the contractions kept coming. again, i was bent over the couch, on all fours, etc. trying to manage the pain. i finally caved and called our doctor office to reach the on-call doctor. keep in mind it’s a holiday, so i had to go through a different answering service to finally get to the doc. he called me back very quickly and i explained what was going on and what happened during my previous delivery.
he agreed with me that it was like pre-labor and to try to relax, drink more fluids, and even drink a glass of wine (off the record). at this point, i happily obliged with the wine and it seemed to push the contractions back to 15 min apart instead of the 5-7 minutes they were before. i decided a hot shower was in order to keep things calm, however, that did not work like the bath did…
by this point, it’s 4 PM and contractions were coming 2:30 – 4 minutes apart and i had enough. i call Mike up to our room in a panic and tell him to call the doctor back and tell him we are coming in regardless. if it wasn’t real, i needed something to let me rest for the big day. if it was real, well then i would rather have a baby in the hospital than our bathroom floor. after talking to the doctor for 2 minutes, we all agreed it was time to come in.
we grabbed our bags, called down to my in-laws we were leaving and were out the door. thank goodness we only live 10 minutes away from the hospital and could be in there quickly. i definitely felt like that woman in the movies though…we get to the hospital and i am contracting every 2-3 minutes. i have to sit through the admission process (even though i did all the pre-admission paperwork, so someone tell me the point here…) and between contractions give my information to the woman. after that, they sit me out in a waiting area for the nurse. i am sitting between two other pregnant woman who are more visibly pregnant than i am and they are just straight up chillin’. meanwhile, i am trying not to cause a scene in the hospital lobby and banging my head into Mike’s arms with every passing contraction.
FINALLY a nurse comes to get me and we are off to the room. immediately i tell them i want fentanyl to take the edge off so i can try to rest (or nap) for a little bit (jokes on me). problem was, there was still more paperwork for me to sign and they had to draw my blood and send it off to the lab before they could give me any medication. the nurse decides to check me in the process of waiting and, SURPRISE, i am 4 cm dilated.
this was it, folks. real freaking labor. hallelujah!!! still waiting for labs, and laboring with contractions every 2-3 minutes, when the on call doc comes in to check on me. i had never met him, but he was exactly who we needed to be there at that moment – good rapport, witty, compassionate, brilliant, and experienced. he promised me he would not let our baby get stuck and he was going to come out on his own most likely without need for a c-section.
thirty minutes passes and i am hooked up to the fluids in anticipation of an epidural, when WHAM, i am 7.5 cm dilated. i look at Mike and say, “if that anesthesiologist doesn’t get in here in 5 minutes, i am going to lose it!” my body was shaking uncontrollably and i was on the verge of vomiting from the contractions and pain. the doc tried to talk me out of the epidural since i had done “the hardest part,” but sorry, doc, no can do! in the knick-of-time i got my epidural and could finally relax for a brief moment.
mike and i were so in shock with how quickly things progressed. total opposite of my first labor and delivery. our moms had arrived to the hospital with dinner (for mike) around 7:45 PM. mike literally left to pick it up when the doc comes in to check on me. takes one look at my contraction strip and says, “yup, it’s time to have a baby.” so calm and nonchalant. in walks mike, 5 minutes later and i say “babe, we are about to have a baby!” this all cracks me up now. how relaxed, yet not, the whole scene was. they start calling to prep the room and when the doc says it’s time. the NICU team and prep nurse hadn’t even arrived yet. one and a half pushes later, Brady entered the world at 8:14 PM.
both Mike and i were overcome with emotion. for me, it was both tears of happiness and terror. i was excited to meet our second son, but now i could no longer keep him safe and healthy. i didn’t hear cries at first which intensified my fear. mike was with him and the NICU team examining him (they arrived 1 minute after birth). i couldn’t see much, but i was getting thumbs up that things looked okay. the neonatal team decided he was adjusting well on his own that we were able to avoid the NICU and headed up to our postpartum room all together that night. with five minutes to spare on the clock, we turned the TV on in time to watch the ball (and peach) drop for NYE. the perfect end to our 2018. good thing we installed that car seat, huh?
Down Home with the Irrs 