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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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.

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love bugs