Dare to hope

Our last doctor’s appointment I went into with totally mixed feelings.  2/10/16.  The girls’ heart specialist did another echo-cardiogram, We had another ultrasound, saw their beautiful faces in 4D, and then visited with the doctors.

This whole time I’ve been afraid to hope.  I guess this still hasn’t changed.  We have went through the whole roller coaster of:  I’m pregnant!, pregnant with twins, twins are conjoined=no chance, to:  it’s the best case scenario for conjoined twins.  Every doctor is hesitantly hopeful.

I go into this appointment not knowing what to think.  Every appointment we have been to seems to yield an entirely different set of feelings and emotions.

But back to the point.  The heart specialist is wonderful.  She says we are family.  Anything we need she will help with.  Gives me her personal cell, and demands we use it if there is ever anything she can do for us.  She shares with us a book made by the last family of conjoined twins that the hospital dealt with.  This mom made a memory book for the surgeon as a Thank you, and it was tear-jerking and heart swelling at the same time.

I will tell you a bit about this book as it’s been on my mind a whole lot lately.  Same story.  She starts this book shortly after she finds out she is having twins, and they are conjoined.  She finds out the same way I did.  She went in for an ultra-sound to find the sex of one baby and got the surprise of a lifetime.

The book details her feelings while pregnant, presents pictures of her beautiful girls once they are born.  She had decided against termination, which everyone had recommended to her.  Her twins shared more “pieces” for lack of better layman’s terms.  They not only were joined at the heart and liver, but shared a significant amount of intestine.

To tell her story, I cry every time.  The babies beat the odds.  They were born, and healthy (all things considered).  The doctors, in her case and my own, don’t know exactly how the next parts will go until they see for themselves how “connected” the babies are, what they share and how much.  They have to see if they can wait to be stronger for a separation surgery, or if one or more is in distress, if they will have to speed up the time line.

In their cases, the babies went home in almost the normal time frame that babies do.  They went home connected.  The father made a special car seat for them to travel in, and they went home for the babies to gain strength so that one day they would be separated.  20 days into their short little lives, one baby was in distress.  Also the same situation our babies are and could be in.  One baby has transverse arteries which can make it hard on her to breath and pump blood correctly.  They had to speed up their time line.  They went in for the surgery.  The doctors told them, and have told us.  There are still many ways this could turn out.  Both babies could live, both babies could die, or one baby could live and the other die.

Both babies survived the surgery.  I will speed this story up just slightly as I could talk about this woman’s journey as if it were my own.  One baby thrived immediately after surgery.  Although the other survived, you could tell she was in rougher shape.  The parents and doctors had to decide how to separate the intestines the girls shared, and she got the lesser portion of the intestines.  After 7 months, this twin passed away.  The other twin still lives today, and never had to have another surgery.  She only has minor scoliosis of the spine, and functions pretty much as a normal 14 year old girl.  The parents even went on to have another child.

This story both gives me hope and heart ache.  I am afraid to hope, but afraid not to?

Thinking about all of this too much literally pains my heart.  Sometimes I get lost in not thinking about it all. 

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