heart baby – Down Home with the Irrs

monthly update: eight months

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

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

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

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

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

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

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.

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.

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!

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?

the present: 24 weeks

hey! remember me? i know, i know. it’s been 10 days since my last post.

suddenly, life was moving at a rapid pace and i couldn’t keep up with it all. between the doctors appointments, closing on our new home, moving, a toddler, and work orders, i was exhausted. still am. but we are finally, mostly, out of boxes and resuming life.

here is the final “catching up” update to get you to the present: 24 weeks pregnant.

weeks 21-23 were exactly as described before. BUSY. we closed on our first real home! we couldn’t be more excited to be be homeownIRRs and create a loving, happy, healthy, home for our growing family. thanks to the help of my parents and brothers, we were able to get the house in a decent place within a week! now it’s mostly decorating and buying new furniture! wohoo! i’ll keep you updated on the home front once things are more settled.

with a new home comes all the necessary appointments and people to the house – aka appliance deliveries, pest control (ummmmmmm California spoiled me for the last three years), locksmiths, internet provider, etc. there was someone new here almost every day to get things up and running. now we are waiting on the final delivery, our washer and dryer. can you believe we have been living without one for over a week now? the laundry pile is HUGE and we are on our last pieces of clean clothes. my wednesday is looking like a day full of laundry…yipee.

somewhere in these weeks, i managed to sneak in an appointment with the pediatric cardiologist. we were referred to Sibley here in Atlanta and according to my research and network of friends, they are THE heart specialists. in the earlier ultrasounds, little bug was 100% showing a heart defect. we did not know the extent of that defect and needed to get the cardiologist to take a look to confirm what was going on.

here is what i knew going into this appointment. it is very common for babies with Down syndrome to have heart problems. i knew little bug had a VSD (hole in the heart) and potentially a much more serious defect called tetralogy of fallot (ToF: basically a combination of four defects present at birth – you can google more about it). i was hoping this appointment would give us a clearer picture of what to expect after birth in regards to his heart.

if you have never had a fetal echo done, word of warning, they are LONG. like 45 minutes of ultrasound long. just looking at the heart. tips: make sure you are hydrated and well fed before you go in there. i was not and almost passed out on the table while the sonographer was taking all the pictures….whoops. and i was solo at this appointment – thanks, NBA.

after a painfully long ultrasound, the cardiologist came in to review the pictures and look more at little bugs heart. after he had everything he needed, we met in a different exam room to go over the results. to my pleasant surprise, the news wasn’t all that bad. if you know me, you know that i worry a lot and typically prepare for the worst (i am constantly working on this).

our cardiologist explained very calmly and in much detail that little bug did in fact have a VSD. it is a large one that will require open heart surgery to repair, usually around 4-6 months of life. they want these little babies to get stronger and fatten up before they attempt surgery (when possible). most VSDs can close on their own (or sometimes people live with them without issue), but it would be extremely rare for this to happen for our baby given its size. he also explained that he did not see any signs pointing to ToF or a larger problem. yahoo! good news from this appointment! we are not necessarily in the clear, but i am choosing to think positively and stay this course unless someone tells me otherwise. unfortunately, they really cannot confirm heart issues until an echo is performed after birth. i’ll go back to the cardiologist at 32 weeks for another check-in.

today, i am 24 weeks pregnant. physically feeling pretty good, except for the aches and pains from moving, chasing an almost 30 pound toddler and being on my feet too much over the last week. mentally feeling okay. i can’t say mentally i am great, but right now, i am hopeful and doing well in the land of okay. i can feel little bug moving everyday, which makes my heart happy. tomorrow i go back to the perinatologist for a growth scan, so i’ll know more then. there is still plenty of time for things to change in regards to little bugs health, but like i said before, i am staying in my lane until told otherwise.

today, and everyday, i am grateful for my two dudes and little one growing inside me. my family for all the love, support and help with the house and Landon lately. my friends, for continuously checking in on me. i am grateful that we have been blessed with the ability to buy a beautiful home for our family.