Tags » Congenital Heart Defect

Defect of the week: Endocardial Fibroelastosis(EF)

This week we will be switching off and discussing another rare heart defect called Endocardial Fibroelastosis(EF). EF occurs when a child’s heart tissue thickens, because of too much tissue growing particularly around the valves. 248 more words

Defect Of The Week

For Those About to Nom: We Salute You

Hey friends: as promised, I would keep you posted on Nolan’s progress with the g-tube wean.  First thing’s first, I have to admit that this is a major challenge, so if you’re thinking about weaning your child off a g-tube, prepare for a marathon…an uphill marathon…an uphill marathon where you’re carrying a boulder….you get the picture. 456 more words


The Preemie Food Challenge

The day I passed my twelve week mark during my pregnancy with my son, I began to contemplate how I would breast feed. I hadn’t felt that strongly about something in a long time, and to be quite honest the selfish part of me knew it was easier to lose the pregnancy weight by breast feeding. 1,681 more words

Breast Milk

Role Models

Now this is a strange one.

I had no intention of writing anything on the subject of Role Models, it hadn’t even crossed my mind.  988 more words

We miss you Birdy

Ava Samantha Grace Colley

December 4, 2012 – August 15, 2013

We love you so much our sweet little Birdy, and can’t wait to see you again in heaven some day. 39 more words


Heart Dads and PTSD

Can dads experience PTSD while their child recovers from intense heart surgery?  In short, yes.

You’ve read this blog, and you might be going through it yourself, so I don’t have to tell you that having a heart baby is tough.   638 more words


Dear G-Tube: This is Your Eviction Notice

As of writing this entry, Nolan is 19 months old and very soon to be 20 months old.  If you recall from waaaaay back in this blog, he had a G-Tube placed for feeds just before he went home from the Norwood Procedure.   866 more words