cross-country move – Down Home with the Irrs

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.

the waiting weeks 3.0: life changes

i’m still working hard to get you guys caught up to the present – 23 weeks. WHAT?! is this normal second pregnancy problems? time is FLYING and i haven’t taken a single bump picture… but first, back to weeks 18-20 aka the waiting weeks 3.0

anyone else a Thomas Rhett fan? the song Life Changes seemed to pretty much be my anthem then (and still now). never in my wildest dreams did i think our lives would be where they were/are.

Ain’t it funny how life changes
You wake up, ain’t nothing the same and life changes
You can’t stop it, just hop on the train and
You never know what’s gonna happen
You make your plans and you hear God laughing
Life changes, and I wouldn’t change it for the world, the world, oh no
And I wouldn’t change it for the world, the world, oh no

weeks 18 and 19 we found ourselves in a whirlwind of life, attempting to settle in. all of a sudden, we were under contract on a home and doing the necessary inspections to make sure we were 100% certain this was it for us. we were busy getting Georgia licenses and tags, finding new doctors for Landon and i (which is more challenging than it seems), and setting up those necessary appointments. we did get to throw in a quick weekend trip to Hilton Head, which helped recharge our batteries a bit. needless to say, waiting the 10-14 days for the amnio results was not that difficult.

we had already accepted the results from my NIPT prior, so we were really just waiting for a confirmation, a true diagnosis doctors would recognize. i had my first appointment with my new OB before the results came in. she was wonderful and caring. and for the first time this pregnancy, i did not feel like i was being treated any different than a mother expecting a typical baby. i don’t know why, but i cried at that appointment. it was probably a combination of life stress, emotions running high with this little bug, and just being hormonal. i promised her i would not cry at my next appointment… whoops!

the outcome of that appointment was exactly as i expected. i needed a referral to a new perinatologist where i would get my 20 week anatomy scan done to check on the health of little bug and continue to monitor the “abnormalities” found at previous scans.

a week later, we were in the perinatologists office for the ultrasound and armed with our amnio results. we are having a SupIRR baby. little bug is confirmed T21 and Klinefelters. i’m not sure if you have been keeping count, but make that a whopping 48 chromosomes to your typical 46. boom. he’s superhuman 😉 like i had mentioned, it is extremely rare to have both syndromes, but both can peacefully co-exist. the Klinefelters markers will most likely be overshadowed by the Downs and that is perfectly okay.

upside of the amnio results, now we had a diagnosis and doctors would stop looking at our baby with the typical lens and instead look at him in the spectrum of health related to these syndromes.

the 20 week ultrasound was probably the first time we went to the doctor and did not get any more “bad” news. little bug actually made some good progress! his growth was great! the signs of the brain abnormality seemed to go away (which was always a possibility) and the echogenic bowel was no longer present. PRAISE GOD! little bugs heart was still showing a defect, but this perinatologist felt more optimistic about it than our last. we were referred to a pediatric cardiologist for a fetal echo which would be done at 22 weeks (more on that later). all in all a good appointment!

Landon had his 15 month appointment (a little late), but 3 shots later, we were all caught up on life things at the moment.

i feel like i need a nap just from reliving this moment in time! looking forward to getting you caught up to the present. we’re probably one post away from that!

the waiting weeks

over the next few posts, i will attempt to do my best to get you caught up to the current (almost 22 weeks) stage in my pregnancy. we left off at 14 weeks, so here we go with the following weeks. i call them the waiting weeks.

welcome to the waiting weeks. weeks 14-16 of my pregnancy. they were weeks spent literally in waiting. waiting for more answers to be confirmed by an amniocentesis that could not be performed until week 16 at the earliest.

like i mentioned in the last post, we decided to go through with the amnio to confirm the exact genetic make-up of our baby boy. and again, like i mentioned, the blood test is very accurate in detecting Down syndrome, but not terribly accurate in the sex chromosome detection. given the results of the blood work, we just wanted to be absolutely certain. we were NOT denying that our baby had Down syndrome, but very skeptical that he also had Klinefelters since it’s extremely rare to have both.

back to the waiting weeks. these weeks were interesting. we were both still grieving, but now had to turn our focus (as much as possible) on the immediate need to move cross country.

we had approximately three weeks left on our lease and logistically needed to get things moving as quickly as possible. the tough part, waiting to find out from our moving company when the movers would be able to load our house. fortunately, our move included the packing service, so we were only responsible for packing what we needed for potentially (up to) 90 days. also fortunately, we were planning to move in temporarily with my parents while we house hunted (more on our house hunt later! i promised this blog would be snippets of our life and not only about DS 24/7). these last two blessings made things a little less stressful, but don’t forget we still have our 15 month old to worry about with all the adjustments ahead. move-wise, things were moving (haha) along slowly, but surely. life-wise. that was a different story.

life-wise, we started sharing with our friends that we were moving and it was a mix of emotions. i was not sure how much more i could handle on the emotion front. we made the most incredible friends in Cali. some of the best of our lives. they were more than friends to us. truly, they were family. when you are cross-country from your families and living in a world that revolves around basketball, where holidays really don’t exist, you learn to rely on one another. us women bonded together while our men were on the road or working, literally, seven days a week for 9 months of the year. we became sister-wives of sorts – cooking dinner for each other, holding babies for each other so someone could shower or take the trash out, drinking and laughing together through the long road trips, and checking in on one another when the earthquakes struck (TWICE WHILE HOME ALONE!!!!!). these goodbyes were tough and they barely had enough time to sink in. i cried pretty much the entire flight to Atlanta…and this is honestly not an exaggeration. to our Cali family, i left a piece of my heart there with each of you ❤

down syndrome-wise, i was making connections. i reached out to two “friends of friends” who had walked this path in super awkward texts and emails. i will forever be grateful to both women for being so kind, open, welcoming, non-judgemental and encouraging. you helped me (and continue to) through my mess of emotions and lengthy list of questions. thank you for your patience and thank you for opening my eyes to this beautiful community. we may not have met in person, but i felt less alone in just a few conversations and emails. one of the best pieces of advice i was given at this time was to continue to connect with women and families in our situation.

i was then introduced to the Down Syndrome Diagnosis Network and their private Facebook group for women expecting babies with DS. this support group has been one of the biggest helps in this journey. it’s a safe place for all the questions, worry, ugly feelings, doubt, fears, etc. each of our journeys are different, but one in the same and everyone in that group only wants to help and encourage. it’s the opposite of everything bad you read about the internet and i love it. if you are going through the same journey and have not connected with these women on Facebook, i encourage you to click the link here or on my homepage and get connected. i promise it is worth it. i have spent a lot of my waiting weeks reading the posts in this group and connecting with these women who are all in the same boat. i learned, for me, connecting with the DS community started to get me hopeful and feel excited again about this pregnancy and baby. this was the first sign of my mental/emotional health gaining some strength again.

we finished up the waiting weeks with all our necessities packed away in 6 suitcases awaiting our flight to Atlanta. with only a few days left, we headed in to our appointment with the perinatologist at exactly 16 weeks + 1 day hoping to see a healthy baby and proceed with the amnio.

stay tuned for an update from that appointment and the waiting weeks 2.0 (hint hint)