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

 

 

three weeks.

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

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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.

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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.

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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.

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brady’s birth story

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?

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getting real.

i don’t want this to be a long winded post, but it just might. there has been a lot going on over here as we are in final preparations for this baby (and the holidays) and things are starting to get real. real, real.

so far, little bug has passed 3 BPPs and 2 NSTs. i go friday for my NST this week – i am praying that he will be awake so the appointment can be somewhat quick. i just can’t be on that monitor for an hour anymore…NOT okay. seriously contemplating rolling into the OB office with ice cream and donuts to get him to do some flips for us while i am there. come on little man, please cooperate!

in all seriousness though, things are getting real. we are two weeks from Christmas and three weeks from meeting our baby (should everything stay the course). this blows my mind. to sum it all up, i am stressed. i am trying to get everything done in time and i am quickly realizing, that won’t happen. not only because there is not enough time, but also because my body is not having it. between the braxton hicks contractions, low back pain, and lightning crotch (sorry for the crudeness, but this is a real thing and what it is commonly known as), my body is trying to tell me to stop.

but how do you stop? how can you stop? most of the week i am a one woman show with a toddler who wants to play and be held. an almost 30 lb toddler that needs a bath every night, lifted and lowered into his crib for naps and bed, constant diaper changes, and up and down the stairs. aside from the physical stress of being this pregnant with a toddler, i still have to assemble the dresser and organize clothes in the nursery, finish Christmas shopping, wrap gifts, pack a hospital bag and about 100 other things i intended to do before the holidays. looks like 90% of this will have to wait. my body is just saying NOPE.

the physical stress is draining. the emotional stress is equally as draining. as we approach the final weeks, i am confronted with a lot of fears and unsettled feelings. some days feel like i am back at week 13 when we learned the news about our special little dude. some days i battle those ugly feelings and then i feel guilty for being back in that space. this baby doesn’t deserve that. i also struggle with the feelings of adding another baby to the mix. my time with Landon will be different and that makes me feel sad at times. Landon doesn’t deserve a distracted momma.

i am also facing the fear of this delivery – the actual physical delivery of this baby. my first labor was pretty awful. Landon was too big for my body and we didn’t know it. this lead to a number of complications and interventions including a vacuum assist, episiotomy, and shoulder dystocia. sparing you any more of the gory details, let’s just say it was traumatic for me, mike, and baby. at the end of the day, everything turned out okay, but it very easily could have been a much different outcome. i know we will have a better understanding of little bug’s size due to all the growth scans we have, but there is still an element of error and unknown. i don’t want to go through that again and i don’t want to put another baby at risk like that again. every night i pray for a safe delivery. we’ll decide in the coming weeks how we plan to go about delivery when we get a clearer picture of bug’s size.

to end on a more positive note, God is working His magic. i would not be able to get through this without the love and support of my husband. for him, i am eternally grateful. my little family is my everything and they get me through the toughest of days. and my friends – man, am i lucky. the constant check-ins and texts really mean the world to me. i don’t know what i did to deserve all of you, but thank you.

remember when i mentioned we took family photos that were disastrous? well, our photographer is SO talented, she captured some really beautiful gems (snack cup and all, because this is real life people)! not only is she talented, but she is also an incredible human being. God put Rachel in our life for a bigger purpose and He’s already showing us why. Please check her out if you are in the Atlanta area (and tell her I sent you)!

Photos: Perfectly Bliss Photography

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should it matter

this question has been weighing on me lately. it’s very simple, should it matter? let me explain myself a bit first.

as i have become more visibly pregnant, i have received a lot of well wishes and congratulations from perfect strangers, new neighbors, and women associated with the team that i am just starting to meet. and while i genuinely appreciate the “congratulations” versus the “i’m sorry” i once received, i struggle with whether or not i need to should share with them that our little guy will be different. this is usually how the interactions go:

person: congratulations! when are you due?

me: thank you! in January.

person: wow, you must be excited! do you know what you are having?

me: yes, we are very excited. another boy!

person: aw, that’s wonderful. they are going to be the best of friends (looking at Landon who is usually smiling or trying to destroy something near by)!

me: yes, that is what we hope! two partners in crime.

so here’s my struggle. it’s not with the perfect stranger. it’s with the people that i will see and continue to see over these coming months. it’s with the people who don’t know about this blog or my instagram or know me on a more personal level.

once little bug is born, are we (or, perhaps, just me) going to become “gossip?” are people going to talk about us and discuss whether or not they think we knew before he was born? and then i struggle again because, truthfully, why do i care? i usually don’t. but for some reason, something deep down, bothers me about becoming “talk” that probably won’t have the best of intentions behind the conversation. it bothers me that people will then potentially feel sorry for us and our life.

i choose not to tell people in that initial interaction because it doesn’t matter. i refuse to let little bug’s life be dictated by his diagnosis. he is already so much more than that. just like any other pregnancy and baby, i want him to be celebrated for the blessing that he is. so far, these interactions are too brief and in inappropriate settings to share something so personal. BUT i still struggle with whether or not i should.

does it matter? should it matter?