NICU Graduate - Baby Girl's Gone Wireless!

Baby Girl had her second NICU follow up today and she looks great!  Everything from head shape to weight gain is fantastic.  She seems like a typical 7 week baby, which is amazing considering where we started.  She's beautiful and so much fun to cuddle.

Mama is a bit nervous to be going wireless, we'll be using a Snuza monitor for the forseeable future.  We're working on adding more tummy time now that we are wire free.  Baby Girl gets OT through Infant and Toddler Services - a wonderful and very awesome organization (they are a 501(c)3, I think you can donate to them if you'd like).  We also receive support and help with early childhood development from Parents as Teachers.  Or at least, we do for now. Apparently, the committe that manages Parents As Teachers budget has decided to defund it, ending the program.  This would be a huge loss for families across Kansas.

We're so grateful for everything the St. Luke's NICU has done for us.  The doctors, nurses and support staff are top notch.  An amazing group of people who work tirelessly to care for a very vulnerable group.  We're so thankful we were in the right place at the right time.  We know our story could have gone very differently.

Baby Girl was 22 weeks old on the 22nd of this month.  She's a NICU Graduate!

CHD Awareness Day #4, Realization

It took me a long time to realize that C4 was never going to be cured.  No matter how skilled the surgeon, there was never going to be a point wher ethe doctor would say "Ok, your heart is good now, you no longer need a cardiologist".  C4's heart will always be broken.  With skilled repairs and careful manipulation of what the surgeon had to work with, we've achieved "good enough for now".

When you tell people you're going to have a baby with a congenital heart defect, almost universally, they tell a story about their friend who had a heart baby who had open heart surgery as an infant and "they are totally fine now".  For some defects, that may be true, but regardless, that heart now has scar tissue and modifications that will forever change how it operates.  That heart can never be normal, it must be managed.

People think that congenital heart disease is something that can be fixed and then you move on, but it isn't.  It is a life long affliction with lasting conseuences.

Some days, I barely think about Charlie's heart.  Some days, I don't imagine when the next surgery will come.  Most nights, I check on him, to make sure he's still breathing.  Most nights, I realize, this is a journey that will never end.

CHD Awareness Day 3, Siblings

The decision to have another baby after C4 was really hard.  We were very scared of another CHD.  The odds increased to 2-3%.  We ran some genetics tests on C4 and determined that he didn't have any obvious syndromes that would effect the heart, this is part of what gave us the courage to try again.  We are so lucky to have Baby Girl in our lives, she's a different adventure, as all kids are.

Even though Baby Girl was born heart healthy, her prematurity led to the possibility of a couple of defects that occur when the fetal circulatory system doesn't correctly shift over after birth.  She could have had a PDA or a PFO which would have needed to be surgically corrected.