the {one} percent ::

I've been working on this post for a little while now and quite honestly it's the post I've been avoiding.  They make a social worker come into any of our dr. consults & she tells me that blogging is a good thing - if nothing else to help myself from having to repeat things over and over again. And although I feel like we've gotten pretty good at "numbing" ourselves up when we need to go into details - I think blogging will be a good resource!  We are so incredibility grateful for the love and support we've already been shown from so much of our family and so many of our friends.  I can honestly say we have been tremendously blessed and can feel your prayers -- so thank you!!

It's taken me a couple weeks to finish it up and I feel like we're in a lot better place than we were 2 months ago when we found out -- so here goes!

When baby #3 decided to join our family it was quite a surprise!  The best surprise I think you can get - we're thrilled to be adding a sweet baby girl into the mix this fall.  Jackobi is particularly excited to have a baby sister.  At our routine ultrasound around 20 weeks the ultrasound showed some inconsistencies with our baby's heart.  My dates were off and my due date was pushed back two weeks, so we were hoping a second glimpse of things a bit later would clear up any "fuzzy" spots in our ultrasound.  Several weeks later we had ultrasound #2 -- the ultrasound tech I had was so sweet.  She was new and although I could tell she was concentrating a bit too much in the baby's heart region, had me leaving my appointment thinking things were a-okay. (in Burley, they send your u/s pictures off to be ready by another dr.) -- less than 2 hours later I got a call from radiology to go back again for an additional ultrasound.  Visit #3 I got the courage to ask what was going on - all they could tell me was that 'things just don't look right' and my dr. would be in touch -- [[it was a Friday and nearing 5:00 -- so I had to wait for his phone call Monday! that's just mean!]] We'll skip some details, but a phone call from my dr. led to a referral to a different OBG in Ogden which led to a referral to a cardiologist at Primary Children's in SLC.

Our sweet baby girl has been diagnosed with a Congenital Heart Defect called Tricuspid Atresia.  1 in every 20 babies are born with a CHD, but tricuspid atresia is an uncommon form of congenital heart disease that affects about 5 in every 100,000 live births.  So I guess we're really the {less} than one percent.  We asked our cardiologist at the last appointment how many babies they see with this a year and she said 2 maybe 3.  Considering they are the "go to" place for Idaho, Nevada, Wyoming, Montana, and Utah - that's not very many.

So here's the basics - normally, blood flows from the body into the right atrium, then through the tricuspid valve to the right ventricle and on to the lungs. If the tricuspid valve does not open (which is the case with baby girl)  the blood cannot flow from the right atrium to the right ventricle. Blood ultimately cannot enter the lungs, where it must go to pick up oxygen (become oxygenated).

Not the news you ever, ever want to hear.  But our Dr.'s are so wonderful - they are kind and more than anything HOPEFUL that things will be okay.  There's no way to "fix" her heart and make it function like an ordinary heart, but there are ways to repair things to hopefully make it function for her.  Many baby's need surgery their first week of life.   We are blessed in that they don't think her first surgery will need to be until she's 3-6 months old.  For us, the plan right now is for me to deliver the baby at the University of Utah so we're close to Primary Children's.  Once she is cleared - bring her home until she needs her first of two open heart surgeries (3-6 months). Her second surgery will be when she's around 3 years old.  The tricuspid atresia link above gives details about both the Glenn Shunt (surgery #1) and Fontan Procedure (surgery #2).  Probably more than most people want to know, but just in case I haven't lost any of you yet! (it's a lot to wrap your head around!)

So how are we doing?  I get this question a lot (or at least my mom does :)) -- we're doing okay.  Your mind does go some pretty weird places when you get news like this.  But we're doing okay.  They tell us the first year will be a really, really tough one - so we're trying to plan and prepare (as much as you can) for the craziness this fall.  Jackobi is excited for extended sleepovers at Grandma's house & we'll just say a few prayers for whoever has to get Kashton to sleep with me gone. :)  We have an appointment this week in Ogden and hope to solidify a date of when I need to move to Utah before the baby is born.  My dr.'s don't want to risk me going into labor here - so 2-4 weeks before my due date I'll be heading down there for the remainder of the pregnancy.  Right now, that part makes me nervous.  I know children adapt so well and mine will be in fabulous hands -- but the idea of having to leave them absolutely breaks my heart.  I'll miss pre-school pick-up, dance days and midnight snuggles. Hopefully I'll only have to go 2 weeks before I'm due and can schedule some long weekend visits from my two babes.  They just can't "move" with me in case I go into labor.  So we're a bit in limbo right now -- trying to figure out exactly what needs to happen before our sweet girl makes her grand entrance (and it will be grand :)) -- until then we'll just keep praying.  Jackobi's prayers are the sweetest.  She's learned to include her new baby sister in them; my heart swells each time she says them.  We are blessed --

".....Heaven's kindness will never depart from you, regardless of what happens......Bad days come to an end, faith always triumphs, and heavenly promises are always kept."

--Jeffrey R. Holland--