July 2, 2012 - Norwood Surgery Day

We arrived at the hospital early that morning to spend some time with Kate before surgery.  She had already been moved to the PICU when we arrived.  They let us hold her for about an hour before the purple people (surgery team) came to get her.  Craig let me hold her the whole time, and I'm sure I cried the whole time.  Holding your child, knowing you are sending them into a major open heart surgery, was even more heartbreaking than I ever imagined.  We were so scared and had no idea the emotions we would endure on this day.

They took Kate from us around 8am and told us we wouldn't see her until that evening.  We waited in the general surgery waiting area, but quickly asked to be moved.  Seeing people in there waiting for their kids tonsil surgery and many kids running around, made the wait even more difficult.  I wished we were just there for a "simple" surgery.  We were moved to a more private waiting area, where we waited for our hourly updates from our surgeon's assistant, Barb.

There were many hours of prep time, putting Kate under and getting all of her lines in before incision was even made.  Barb finally told us that incision was made around 11:30am and she was being put on the bypass machine.  The bypass machine does the function of the heart and lungs, while the surgeons stop the heart for surgery.  Her heart was stopped for approximately an hour while he worked.  The surgery took all afternoon but she only had to be on the bypass machine for that hour.  She came off of it fine and surgery went as planned.  We were told it was completed around 5:30pm.

They settled her back in her room and we were allowed to come back to see her around 7pm.  She looked so pale and her chest was still open but covered with a plastic cover.  We were relieved to see her, but we only got to stay with her a short time.  Within that hour, we were back in our waiting room because Kate was not doing well.  Her heart rate was very high and her blood pressure was very low.  They monitored her for hours with very limited updates for us. 

About 1:30am, Kate's surgeon came to update us.  He told us that she did not look good and he felt it was time to put her on the ECMO machine to give her heart a break.  Her blood pressure was dangerously low so he wanted to be very cautious and get her on the machine before she could potentially code.  I have never cried so much in my life or felt so helpless.  Why was this happening to our baby??  Being put on life support??

Putting her on ECMO took about an hour.  It is something you never want to see you child on...2 large cannulas (plastic hoses) attached to her heart through her open chest with her blood cycling through to a machine that oxygenates her blood and pumps it back into her body.  She was so pale and puffy b/c her kidneys were not working well.  At this point, we were scared and exhausted. 

So at the end of this day we had an 11 hour and 8 hour stretch of not seeing our sweet baby Kate...and she was on life support.  I never knew it was possible to feel as much despair as I did that day. 

ECMO machine

Tree of drugs



Sweet Kate