12/27/2004 9:45:00 AM
Post date: Apr 15, 2011 5:50:28 PM
Oh, what memories this season brings!
One year ago we brought 3 month old Natalie home from Children's Memorial. One year ago from Christmas Eve to be exact.
We were so excited to bring this little bundle of joy into the world. As I was pregnant, I could not have known the sweet smile that she would have, I could not have known the joy that she would bring into my life, and I did not know the words Biliary Atresia. For weeks while the doctors tried to figure out what was wrong with her, we kept hearing those words, "Biliary Atresia."
One doctor even said, "Oh, it can't be that. That is an awful disease. I'm sure that's not what it is.
But it was. And on December 19, 2003 Natalie had a Kasai operation.
We were so scared. We had never heard of this disease that was killing her liver that was making her sick. And here we were in the NICU, following her surgery, watching her moan in pain. Listening to every beep of the monitors. Reading her medical charts, for the slightest hint as to what was going on. We knew so little then.
Over the past year we have learned of Cholangitis and of PICC lines. We have learned to give medicines though IVs. We have learned of liver function lab tests and of medicines called Actigall and Adeks vitamins to help Natalie thrive. We have learned of ascites, a fancy term for fluid retention around Natalie's organs.
And we have learned of strength, borrowed mostly from the people surrounding us, supporting us up through prayer, and phone calls, and benefits! We have become less cynic and more appreciative. We have learned to never take anything or any day for granted. Mostly we have learned of unconditional love for the little being we call Nataliebear. Merry Christmas Natalie, we love you.