Taking the good news with the bad news

Yesterday we had an appointment with the Neurosurgeon for an after shunt surgery check. The doctor has diagnosed her with hydrocephalus which is enlargement of the ventricles in the brain. This is associated with Dandy Walker Syndrome. Doctor was very impressed with Ella and her learning and growth. We will re evaluate Ella in 6 months on her shunt.

Today we were given bad news, which we expected for the last month. But its harder when you hear the bad news in person. Ella will be going in Monday night to have surgery in the Cath Lab. The doctor will try to insert a catheter into her groin, if all goes well and the catheter fits than they have two choices to close the artery that did not close after she was born.

1- Insert a spiral type device
2- Insert a cork type device

Doctor will not know till she see's Ella''s artery to know which one she will need to use. But she is pretty positive that Ella's artery is too large to fit a spiral. So we will have to go with option 2. Option 2 has a tendency to cause more heart problems. If this happens than we will reschedule and have open heart surgery in January. Doctor will know right after she inserts the cork if its going to cause further heart problems.

IF the doctor can not insert a catheter because of Ella's weight, than we will also have to reschedule for heart surgery. 4 weeks ago the doctor put her on less water, more formula to gain weight. During these 4 weeks Ella only gained a pound. She is weighing in at 12lbs which is very small for her age.

If we end up scheduling heart surgery, the doctor is scheduled out a month. So it would be in January, we are doing this surgery as a semi emergency surgery because Ella is hardly eating and not getting the nutrition she needs, she is also not breathing normally.

I broke down when the doctor mentioned surgery, she assured me that this condition will not damage her heart or her brain. She said that we need to get this fixed so she can grow and be able to develop. This makes me feel a little better. But anyone that has a child that has had to watch them go through surgery or go through something complicated knows that this isnt easy on the parent or the child.

We all have had a really hard few weeks with Ella's symptoms increasing and knowing that we were going to have to face this appointment and schedule surgery. We knew when I was pregnant with her what we may face, but it has been a lot harder going through it than just knowing about what we may face.

Our support from everyone is beyond what I thought we would have. Everyday I think about everyone and how much love, support Ella has. The world is not all bad , UN trusting people after all.I wish I could wish us a Merry Christmas and a Happy New Year at the end of this post. But all I can offer is my love and gratitude for everyone that is there for our family.  Praying to Jesus to bless our family with support to strengthen our family and to make sure Ella's surgery goes well. Sending love and hugs to everyone.