It's a post I never ever thought I'd have to write...yet...here I am. And truly, if you've kept up with my weekly posts, you've known I've been extra anxious (especially lately) for lack of movement and such. And truly, something has just felt 'not right'. I can't even explain it, but the no movement + that feeling has just irked at me recently...hence why I bumped up my ultrasound by almost 2 weeks.
I had a jam-packed morning (which looking back, even that felt strange) full of school drop-offs, meeting at school, squeezed in a pedi and then darted off to my 19 week ultrasound appointment. Mike had to work the night before so he stayed home to sleep -- and I told him to, I said it was just another ultrasound and no big deal. When the tech called me back I told her I hadn't felt any movement and was really hoping it was just a super thick anterior (front) placenta and that would explain it. Well, it took her about 30 seconds to realize something was not right with our little babe -- and even I noticed this. The ultrasound screen looked, well, WEIRD. I had literally just pulled up Patrick, Rosie and Annie's 20 week ultrasounds to compare so I feel like I had some fresh ultrasounds in my mind and what I was seeing was not that. The tech asked who my doctor was, I told her, and she promptly shut off the machine and said that the baby looked very swollen -- lots of edema all over...and said she wanted to get my doc to have her do the scan with her. Immediately my heart sank -- I KNEW something was up. Something major...this is an anatomy scan that usually lasts a good 20+ minutes...not barely three. As soon as she walked out of the room my heart started to race. I grabbed my phone and tried to google what I *think* I saw but I had no idea where to even start. I just set it back down and decided to wait and see -- maybe this wasn't a big deal.
A few minutes later my OB and the tech came back in and started to scan my belly again. They told me we were having a little boy (at this point I didn't even care -- there was something wrong with our little dude and I wanted to know) and that he had significant edema all over the internal (lungs, chest, abdomen, heart, etc...) and external parts of his body. Honestly, I noticed this on the ultrasound and it looked very very odd -- almost like a puffy vest covering his entire body. You can kind of see it in the ultrasound -- the dark part behind his head/neck and then up around his face where it starts to turn white -- that is all his skin swelling and layer of thick fluid. They though they saw some other things too but honestly the edema alone was pretty terrible. Fighting back tears, I asked my OB to be realistic and straight with me: what does this mean?! She said she couldn't be for sure -- they'd try and squeeze me in upstairs with the high risk specialists today for another ultrasound with more details -- but she said it didn't look good. That this baby had some serious issues and the prognosis looked very grim. I lost it; and deep down inside I had known for a while that something was not right and this confirmed it and it was just gut-wrenching. Devastating. The worst news a mother can hear: there is something fatally wrong with your child.
I went with my OB back to her office (so I wasn't typing up the ultrasound room and crying in front of anyone...but I guess they see this often? sometimes? seldomly?! I mean, part of their job, right?! A completely shitty part but still. A part) and had her call Mike and fill him in while I fought back sniffles and waited for the nurse to hopefully get me in upstairs with the specialists.
Gosh I love my OB. She is just the sweetest person and since Mike wasn't there (yet! He was on his way up) a very comforting person to have digest this...and distract me a bit (cause who doesn't like talking about pictures?!??!). After about 10 minutes the nurse came in and said they could get me in like now with the high risk OB and specialist for another ultrasound so I headed up (fortunately just a floor up) and met Mike in the hall, fighting back tears...which I feel like will be a regular occurrence nowadays and I'm telling myself over and over THAT IS OKAY. It is okay to cry. It is okay to love this little guy and pray for him and talk to him and celebrate him.
Shockingly we only waited maybe 5 minutes upstairs before they called us back -- which was great. I fully expected us to wait an hour or more so that was nice we got to go back. I wanted more details and answers and a sliver of hope that maybe MAYBE that first ultrasound was wrong.
The tech scanned my belly in silence for almost 30 minutes -- I asked questions here and there (cause, duh, I know what I'm looking at and things kept looking 'odd' on the screen -- not like any ultrasound baby parts I'd ever seen before) and the tech kind of answered them but kept saying the doc would be in soon to explain everything. She left and said the OB would be back in in a few minutes to go over the ultrasound and do her own scans.
In that time I canceled our dinner plans and my photoshoot for that evening...regardless I was in no mood to do either and I hoped my clients and friends would understand (spoiler: they did) with my vague (for now) cancellation.
The high risk OB came in and basically confirmed everything that we were told by my OB and tech downstairs and some other things. Along with the swelling (maybe that's why my belly is so huge?! This baby was measuring quite big with all of the extra fluid he had in him) she suspected a heart defect -- something she couldn't really see because of all of the fluid. Our sweet boy was in heart failure. He had clenched fists, clubbed feet, a very very small bladder (that they had a hard time locating at first, which indicated very little fluid output), massively huge cysts/fluid pockets on his neck, lungs and intestines, and some facial features that all were not only abnormal, but pointed to Trisomy 18.
I knew plenty about this already, as one of my internet buddies has a little girl with it (who's about to turn 2!) and have done some features for TinySuperheroes on it. But I had never heard it partnered with some of the other issues, such as the edema and fluid. I asked the doc about this and she said it definitely can be part of the Trisomy 18 diagnosis...which she wasn't formally diagnosing our little guy with but gave a pretty good guess that is what it was. She offered us an amniocentesis which would confirm any suspected genetic conditions, but our heads were swimming. I asked her point blank: what did she think the prognosis was for our little fella and she said she'd be surprised if he made it another few weeks. He definitely could, and make it another 10+, but chances are slim -- he appeared to be in heart failure and there were too many other factors that didn't look good for his chances. She did tell us about termination (which I think they have to tell you?! I mean, they tell you all of the options I guess) but that's something I could never do...so that's off the table.
Crushing. Absolutely devastating.
Not the news we were expecting at.all. And somehow, deep down, I had sensed something was off for a while. Mother's intuition is strong I guess. But there was no way I was expecting this -- I was thinking placenta previa again, maybe accreta -- something wrong with ME...but not this. Not with the baby. Not with our sweet little baby boy.
There are not many words that can describe the rest of the day. Surreal is one of them -- living in this haze between 'is this really happening?! no way.' and all of the 'oh my gosh this is happening' thoughts running through my head. It was spinning. I'm sure Mike's was spinning. There were so many questions we had that would have to wait until I spoke with my OB -- I told her I'd give her a call the next day because we needed some time to process everything (and frankly, fucking cry my eyes out over and over).
We went to pick the kids up -- fortunately Annie was at my mom's napping and Mike's parents grabbed Patrick and Rosie for us from school -- and that was just the hardest: telling our parents that their new grandkid -- a little boy -- wasn't going to be here with us. And we didn't tell the kids...we will...but not now. They are too excited about their new sibling and until we know more we are just going to keep playing along. Patrick asked on the way home when the baby was coming. I told him it was a surprise. He said, “Well I am sooooo hoping it’s a boy because I want a little brother so bad and I have 2 little sisters already so I want a brother!” and I just lost it. I think that hurts the worst: the kids are gonna be devastated.
Frankly, it felt grim to talk about this -- the upcoming and unknown. Because right now this little guy was still very much alive and heart beating away in my growing belly yet here we are talking about his impending death. And all I could think about was my little fella and all of the issues he has and is currently fighting to survive in utero with...and praying he wasn't feeling any pain. That despite all of his issues, that he wasn't feeling any of it...that he feels us and that he knows that we love him and wanted him so badly and are crushed we are not going to get that.
We called a few more family members and sent text messages to several more. By the end of the day I was just spent and didn't want to talk about it anymore, so thank God for text messages so I can send and be done. That was the hardest: the telling people. Because it seems everywhere I go people alwayyyyyyyysssss ask about due date and how far along and if it's a boy or girl and yada yada yada and truly I don't know what to say now. Lie? Just keep with "Oh due in February!" and act like nothing's wrong? Or tell the truth and make for a super awkward situation. I.just.do.not.know. I told Mike we needed to post and share this -- for the sole fact that it's out there so hopefully it will minimize some people asking how things are going. I'm an open person, you know this if you've read my blog ever, and I am not ashamed of this little guy or anything like that -- it's just hard. And crushing. And brings crazy emotions (and truly, uncontrollable crying...that you hormones) up whenever he's discussed or I think about it...and yes, I want to celebrate the heck out of this little dude for however long we still get to have him with us, even on the inside, but I also don't want to have random break downs in front of strangers either. Ahhhh, so many things going on right now.
My OB called me Friday morning to answer my questions and kinda go over everything...which I'll probably detail in a later post. There is so much ahead and even more unknown and it's just a lot. A whole fucking lot to take in at once (and subsequently unload here on this post) so that's more for another day.
I asked Mike about posting on social media (cause yes, we'd told friends and family but I just wanted it out there cause even in shitty situations good vibes coming your way is alwaysssssss good) and he agreed, so I came up with this little posting:
Although usually team green, we found out yesterday at our 19 week ultrasound that we are having a little boy. Unfortunately the circumstances in which we found out were not at all what we were expecting. Our little guy has a host of issues with a very grim prognosis. We don’t know for sure as to what specifically is his diagnosis (having an amnio is up in the air currently) but the high risk OB suspects Trisomy 18 coupled with a few other things. We are in shock, saddened, completely devastated and praying for a miracle. We love this little fella so so so much already and our hearts ache with the news we have gotten. It looks like we will be meeting our sweet little boy sooner than later, and greeting him with a hello and see you later all at once. Thank you all for the thoughts and prayers already, we so appreciate them.
And I'm crying again reading it. So much more I wanted to say but I kept it informative and simple. And if people want to know, they can ask. I'm an open book and I get it: people want to know. I got about 30 new instagram followers after I posted it today and I GET IT. People are invested and interested and want to know (heck I've been guilty of doing the same thing before) and I take it as a sign that they care about my little family and sweet little boy. So if they want to follow along and read my posts and ask questions, they can.
I could go on and on but I'm going to stop and leave it here for now. This is not the ending of our little man's story, but only a small part of it and the profound impact he's already left on all of our hearts.
We decided on a name for our little guy and I'll share that later in a post on its own, cause he deserves that. He will have a birth story I share too just like the other kids and his pregnancy will continue to be documented and shared, because he IS our son and one of our four kids and although our time with him is looking to be short on this earth, we know we will see him again in the future.
I'll leave you with my self-portrait from today. I love you so much baby boy and will keep celebrating you and this pregnancy I get to carry you as long as I possibly can. We love you little man SO MUCH.