some pretty serious stuff...

image via medicineworld.org

so after we found out about weston's heart complications, i wrote a bit about it as a really easy way to let lots of people know what was going on. i think as we get closer to him being here i'm ready to write down the details of what's been happening...mostly so i don't forget and also to give more insight as to how our lives will be changing really soon. this is mostly for me and i'm guessing it's going to be pretty lengthy so no need to feel obliged to keep going :)

TOF (tetralogy of fallot) is the easiest way to describe what's wrong with weston's heart. but it's also pretty misleading. of the two structural abnormalities of TOF, weston's heart is only consistent with one. the thing that makes what he has so rare that the cardiologists didn't even have a diagram for it in their "special folder" is that instead of a small pulmonary valve (the valve in your heart that keeps blood going towards your lungs instead of back into your heart), he has no pulmonary valve. so his official diagnosis is tetralogy of fallot with absent pulmonary valve.

this causes a couple of concerns...mainly that because there is no valve to keep the blood from coming back into his heart, the blood just moves out and in, back and forth. right now, he's actually not at risk at all. but because the blood is moving back and forth, it's causing the arteries it's moving through to dilate or grow.

when we first found out the specifics of what he has, they measured his pulmonary arteries...they were at about 6-7.5 mm. a normal measurement would be around 3. when we went back about 6 weeks later one had grown to 8 mm while the other had grown to about 12.5 mm (or 1.25 cm). the doctor mentioned at the first visit that the largest he had seen was 15 mm. weston still has 7 weeks to develop and thus 7 weeks for those arteries to keep growing.

the concern around these dilating arteries is that they put pressure on the bronchioles in the lungs and will greatly inhibit weston's capability to breathe on his own. as we see it, the most critical time for him will be when they cut the umbilical cord and he has to start breathing on his own.

one of the most difficult things for me to process during this whole experience has been my realization that i can't control or really prepare for what's going to happen. for every question we have about specifics of surgeries and outcomes and what to try to expect, the doctors have basically let us know that we won't know until it happens. the spectrum of possibilities just of what will happen when they cut the cord is huge...anywhere from intubation working to it not and having to perform a tracheostomy. then there are risks with lack of oxygen to his brain and so many other things.

and that's just in the little dude's first minutes of life. he'll have continuing surgeries all his life to correct the structural defects as well.

but we've been blessed with peace. he's already taught us so much and the little dude's not even here yet. we're grateful for the preparation, emotionally and intuitively, we feel that Heavenly Father gave us before we knew anything was wrong. the peace that has permeated our home and our hearts is sacrosanct. it's allowed me to keep functioning and even thriving some days and to still be the mom i want to be to the kiddos we have now. we've already had so many experiences so close to the Spirit to get us ready for what lies ahead.

we've chosen not to dwell on the endless possibilites of how our lives will change. i was in that place for the week before we got amnio results back and it was hell. instead we have just accepted that life will be different and hard, but that it's part of the plan the Lord has for our family. i think the real test for us is to choose to be faithful and hopeful and to cling to the truths that we know bring peace.

thank you again for all the concern, and prayers, and offers to help. another lesson weston has already taught me is that i can't and i'm not supposed to do this alone. so thank you and we'll be in touch and taking you up on all the wonderful and sincere offers to keep our family functioning when it will be the hardest.

i'm drained now, so i'm done. :) but i'll keep posting when i need it for me and when we have any updates. we've felt your prayers so much in the last few weeks. thank you. thank you. thank you.