Thursday, September 24, 2015

What they didn't say.

When we were 20 weeks along with our 3rd pregnancy we went in for our normal anatomy scan, or what others associate with the ultra sound to find out the sex of your baby. Whether you were buying blue or pink soft onesies, hair bows or bow ties. 

   But for us, it was a day that changed us forever. 

At our 20 week anatomy scan they couldnt get a good look at babies heart, though I could only see three chambers each time it danced across the screen. We were sent for fetal echo in hopes that it was "nothing" and we were just being overly cautious. We only wish this was the case. 

 Our boy was diagnosed with a Critical Congenital Heart defect. 

We were told MANY things that day.

 Like his left side was extremely small and barely working (his heart that is). 
His Aorta was small and narrrow. 
He may not survive. 
His life would be hard and have little to no quality.
We could choose abortion. Abortion was an option. If we chose abortion it needed to happen somewhat quickly because of his fetal gestation. ETC ETC. (I mentioned this multiple times because it was mentioned multiple times!!). 
This would be a huge change and challenge to our little family with my husband and I being somewhat younger and having two small children already. 
We would have a few options. Abortion, give birth to him and take him home to pass, three open heart surgeries before 3-4 years old, or heart transplant. 
Because we didnt choose abortion this hospital only offered to do the three surgeries or compassionate care/hospice. 
We were told the hospital was great and could handle it. 
He could have multiple developmental delays. 
It could be a rocky course of recovery because every child is different. 
Become accustomed to PICC lines, IV's, heavy narcotics, breathing tubes/machines, Oxygen Saturations, Blood pressure. 
He could pass at anytime, and most of these kids dont make it to school age. 
We would go home with machines, daily phone calls to check weight and Oxygen. 
And so much more. 

There is alot we werent told. Alot we werent prepared for. 

They didnt say that we would learn to wear an array of masks to make it through the day.
They didnt say that we would learn the hospital better than some of the staff. 
They didnt say that while its challenging, we would learn to balance hospital life with home life/time with our other two children.
They never mentioned ECMO (life support) as a possibility. But it happened.
They never mentioned possibility of brain bleed or brain damage occurring that could change his life and make for more challenges.
They didnt say that we could become accustomed to all of this and more.
They didnt say he would make it. 
They didnt say I would sit by his bed and beg for his pain to go away, even if it meant me telling him he could move on past this world if it was to much. 

Out of everything, they didnt say that we would learn to celebrate EVERY bit of progress. That we would learn to juggle better than any circus clown and do it with a smile on our faces most days. 
They never mentioned that we were strong enough for this life. (We still break at times, what parent wouldnt.)
They never said we would learn to love through any pain that came.
They didnt say he would have an infectious smile that could make even the most stone cold person light up.
That he would smile even through his biggest struggles.
That he WOULD start school one day, and the days in the hospital would just seem like a dream at times.

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