Lily is going to have cardiac sugery.
Our cardiologist gave all of Lily's information to the cardiac surgeon at CHOP and he said he would recommend surgery, and soon.
He feels with the decrease in her pulmonary hypertension we have a window, and need to take advantage of that. We don't have a date yet, probably early May. They want to get out of winter, so to decrease the chance of her getting a cold.
The surgery she is getting is called a Glenn procedure, she will then need a second surgery, the Fontanne, about a year later.
There was a possibility they would do one big surgery, but because she still has hypertension and is considered high risk, it is safer to do two seperate surgeries.
Both surgeries will be open heart, and she will go on bypass.
So how are we feeling about this news???
Of coarse we are thrilled and excited, this is what we have been hoping and praying for, what the medication has been for, what the doctors had said would most likely never happen - so this news could not be more amazing.
On the flip side, we are nervous, not fearful, just concerned for our precious girl.
She is doing so amazing, so happy
What we know is that is it is a miracle that we are at this point, and we know that if God has opened this door, then we need to walk through it, trusting him all the way.
What we know is that is it is a miracle that we are at this point, and we know that if God has opened this door, then we need to walk through it, trusting him all the way.
the thought of jeopadizing that is unthinkable.
What we know is that it is a miracle that we are at this point, and we know that if God has opened this door, then we need to walk through it, trusting him all the way.
When we adopted Lily a year and a half a go, we expected to bring her home, and she would get the Glenn, and then the Fontanne, the pulmonary hypertension was not something we were expecting. When we were told she would very likely never get surgery and maybe only live until her teens or less - we started a journey we had not anticipated when we accepted Lily's referral.
Had we set out to adopt a child who may not live? No Way.
Would we have originally excpted her referral if that was stated? I honestly don't know.
What we do know is that there was a point after we had accepted Lily's referral that it wouldn't have mattered what news we could have recieved, she was now ours no matter what. When we recieved updated information on her saying she was delayed, couldn't sit, couldn't talk, we could have changed our minds, but for both Chris and I we knew it didn't matter. She was our daughter, and there was nathing that was going to stop us from bringing her home.
Does that mean it has all been eas? No.
There have been moments when we have said - man life would be easier if lily could talk, was out of diapers, and was well, but those are just brief moments. Honestly we have been surprised by what we have found we can handle, and the alternative for her is unthinkable.
Most of our momnets concerning Lily are filled with joy, love, amazement, and laughter, we feel so honored to have been chosen to be her parents and family.
This year and a half has stretched our family in many ways, we have seen the good, bad and the ugly about ourselves, but that's ok we have all grown, and are better for it.
We could not imagine our lives without this precious girl
