Another surgical decision

This will be another blog coming from my cell phone, So please excuse any grammatical errors that you may see. My heart is heavy and very on easy regarding the decisions that we are having to make. Our choices were laid out before us today at a family meeting between the physicians and the family. Doctors are telling us that Ava's lung condition is being contributed to her esophagus being incomplete And her aspirating her secretions. This was not something that surprised us. We already knew that at some point Ava would have to have her Esophagus repaired. We just thought that she would have more time to grow bigger before we actually had to have it done. As of today this is no longer a choice. We are told that we had two decisions: We can either do nothing and try to win her off the ventilator and take her home or We can do the surgery. If we do not do the surgery and take her home then we would definitely be back in the hospital within a short Time. She would again aspirate and end up with pneumonia and possibly even respiratory failure. We would be in the exact situation that we are in in now trying to make a decision on the life of our daughter. In addition to that, one of the times that she comes in with pneumonia, it is likely to take her life. If we decided to do the surgical route then she would require a lot of recovery time, healing from her chest being opened up, and a lot of ventilator time. The risk with surgery is of course the obvious but also with Ava we run the risk of her never coming off of the ventilator. As you have read in previous blogs the risk of trisomy 18 babies becoming ventilator dependent is a lot more than a baby without trisomy 18. They have now added an additional diagnosis to Ava's running list of diagnosis. They are saying that she has chronic lung disease. Her daddy and I have worried over our decisions and prayed beyond belief. We have asked the Lord to lead us to the correct decision That is best for her during her earthly stay. We have cried more tears than we knew we could And begged Him for more time With her here with us. The doctors told us that the best way to make our decision was to figure out how we would feel about our decision if Ava passed away. I honestly cannot even think about her not being here with me. Do we do nothing and watch her aspirate until she has pneumonia again and has to suffer through another hospital stay on a ventilator? Or do we do surgery and watch her suffer through incisions i and mechanical breathing with the hopes that she recovers and can come off the ventilator? I do not wish such an extreme decision on even my worst enemy. I think I even heard one doctor say how would you want your child to pass. My heart has been breaking all day long as we have struggled with our decision. I feel so helpless watching my daughter have to go through something that I cannot prevent or protect her from. How far is to far and when is enough, enough? Bryan and I sat down with the surgeons and the intensivist today and made a decision to do surgery on Monday morning. The surgery will take approximately 2 hours. during this time, they will make two incisions in the right side of her chest, dissect her esophagus and attach her tummy to the end of her esophagus. This is a hard surgery to recover from as an adult. They have a 95% success rate with this surgery. The surgeon is not fearful of surgery being successful, they are worried about her recovery from it. My stomach turns as I fear that this surgery could possibly take my daughter's life. I am a very optimistic person but I don't think I have ever been so afraid of anything. She is so small and fragile and I worry so much about her and her endurance. I often wonder of she thinks that this life is normal and pain is part of fighting to live it. I know she is a little fighter, she has proven it up to this point. She has exceeded every physical expectation any of the physicians and others gave her. She has made us all so proud. We know that the Lord has a plan that is greater than we can see. There has not been a night that goes by that AG and I do not pray together. We pray for our friends, our friends family, the other children in ICU and the families of those that have lost their children. This week we met a family with their little girl who was admitted in ICU a couple pf days before Ava Grace. She was diagnosed with leukemia a few days before Ava arrived at the hospital. She Unexpectedly passed away on Saturday. It was so tragic to watch this family lose their daughter. The fear of this hit so close to home that it shook me to my core. Life is not guaranteed and I know that we all have heard that cliché, but until you are put in a position to make a decision on your child's life, I beg of you to treasure each moment with your children. I miss my boys so much right now that if it wasn't for the fear of leaving Ava here for a few hours by herself, I would probably drive to Greenville to see them. Monday will be a very difficult day for our family as we watch Ava roll back for another surgery, all while begging the Lord to please have mercy and bring her back to us alive. Please keep my family in your prayers as we cling closer to the Lord then we have probably ever been and beg of him to cradle Ava in His arms and bring her through this surgery without any complications. We beg that He allows her to recover with no complications and to get off the ventilator, so she can go home to our new house and play with her brothers and family. These last few lines are said in mine and AG's prayers every night. The Lord is greater than all of this and I know He hears out prayers. Please, please take a moment out of your day to pray for Ava Grace as well. Prayers are heard loudly in numbers.

"If you wait for perfect conditions, you will never get anything done." (Ecclesiastes 11:4 NLT)

“His disciples asked him, ‘Rabbi, who sinned, this man or his parents, that he was born blind?’ ‘Neither this man nor his parents sinned,’ said Jesus, ‘but this happened so that the works of God might be displayed in him.’” (John 9:2-3 NIV)