Friday, April 10, 2009

some pretty serious stuff...

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.


  1. I love you Callie!

  2. Thanks for sharing all of those details. Your faith is inspiring. I wish I were close enough to offer some tangible help, but you'll be in our prayers nonetheless.

  3. Thank you for sharing it this way Callie. Honestly I think this is the best I've ever understood it, and I talk to you about it every day. I love you. I love your family. I love Weston. I love your example of faith and peace, because the alternative seems pretty destructive and sad.

    We'll all help you get through this and we'll all learn and grow and love together. I'm so glad to be your sister.

  4. Just wanted to give you (((HUGS))). All of us (meaning us in the hood') are here for you with anything you need! Good Luck with everything. Weston is so lucky to have your family!

  5. wow callie, i'm always so inspired by you. thanks for explaining this to us. i really wish we were there to help physically. we pray for you everyday, even grant. if we can do anything, let us know. we love all of you!

  6. I love you Callie...we pray for you and Jon and little Weston at least twice a day. Thanks for sharing some specifics. You ALL mean so much to us.

  7. Callie-
    Ditto to all of the above. I thank you for explaining things in a way I understand more. I understood what you had explained previously but this helps much more. Daniel and I are so thankful for you and your entire family. We will be there for WHATEVER you need! LOVE love LOVE you!

  8. wow, your vernacular is amazing! as soon as we return i'm on the list to help. you rock callie canlas.

  9. Love you guys. Prayers always.

  10. We'll keep you guys in our prayers. What a miracle Weston is. I can't wait to meet him!

  11. Jon sent me here to read about the details and I'm beside myself with honor to know y'all (well, I know Jon more than you, you and I have only met once a couple babies ago). Your family is in my prayers, thoughts and cares :) Power to Weston!!!