Sunday, October 21, 2012

2 Weeks From Goodbye

It has taken me two weeks to do this blog. Two weeks ago my sweet fighting peanut sprouted wings and took flight. Reliving that day has been a constant battle in my heart and head. Putting it in writing just seemed to make it real and I wasn't ready for it. Honestly, I'm not sure that I am ready now, but I am going to attempt to take a step in the admission to myself process. We received a call at 6:47 saying "Amy, Ava Grace is actively coding. Get down here now". My heart started racing and ironically I didn't get in until late the night before from the PICU, that I just took a bath a put my clothes on for the next day. I never do that and not sure why I did that morning. Bryan stayed behind with Trace so he could wait on my mom to run up from a few doors down in the hotel. I remember thinking "I'm not going to make it". All I could do was pray in the mist of throwing on my flashers and seatbelt. I honestly did not think my truck would go fast enough. I prayed Lord, please heal her or take her. I know that it sounds cruel, but I did not want my baby girl on a ventilator and already gone. I couldn't stand the thought of having to make the decision to take her off the ventilator or her suffering. I instantly called my friend, Jessie, who works in the NICU and was on that night, so she could meet me there. Once I got there, I ran to the PICU. Ava's room was the first one when you rounded the corner. They had moved her over one room. All I could see was all the nurses and dr's in the room, around her bed. She was on the ventilator still, sideways in the bed and grey. My heart sunk as I knew my fear had come true.  She was zonked. She didn't look like my baby. She had a new tube, a catheter in her right lung. The Dr. pulled me to the side and told me that they had left the ventilator pressure to high for too long, her lung basically popped and collapsed, causing a decreased in oxygen and cardiac arrest. He said she was in cardiac arrest for a full 3-4 minutes. He also said that most babies could tolerate that pressure but Ava Grace's lungs were just "too sick to handle it". About this time Bryan made it to the hospital and the whole story was retold. The dr. added then, that he didn't believe Ava Grace would ever come off of the ventilator and be able to survive. All I could do was crawl in the crib with Ava Grace and lay there with her. My heart was so sad. My little girl was not responding to anything I used to do to get a rise out of her. The dr said he didn't give her anything, so this said to me that she was trying to leave us and had just been down to long. Cry, cry, cry. Finally, I fell asleep right beside Ava Grace. I'm not real sure how long I slept, but I have to admit, it was the first time that I actually rested in months. I was right beside my baby girl and was not worried about something I would not do right or miss and hurt her. I wanted a second opinion from the head of the PICU on Ava's condition and prognosis.  I did find out that she was given medication during the code and that it was sedating her. A friend of ours brought in a radio with Christian music playing for soothing. The head PICU dr called a meeting and our family was called in. This meeting would change my life forever. Bryan and I sat in the meeting with our family outside of the door. This dr was so kind and gentle in presenting the information to us that Ava Grace would never come off of the ventilator. She said that her surgery that was scheduled the next day was a bad idea, since her lungs and heart would probably not be strong enough to survive it. Even if she did, she would still most likely not come off of the ventilator. LARGE KNOT IN MY THROAT! Tears came to my eyes and my husband told me that he would support any decision that I wanted for Ava. The dr told us that "if this was my child, I would stop and just make her comfortable. No more ventilator or suction." Tears were streaming down my face. She told us that we had gone far and beyond what most parents would go and had done an exceptional job. She told us that they were keeping her sedated because she was trying to pull out her breathing tube. This did not suprise me at all, since she has done this since day 1. She was so strong willed. I love this about my baby girl. This was the first time that a dr in PICU truly seemed to place theirself in our shoes and think about what they would do if in our situation. She added that if she was in our shoes that she could only hope that she could be as strong as us and make decisions based on Ava's quality of life and not on her selfish needs of wanting her here on earth, despite Ava's suffering. Bryan and I talked for a moment with Palliative Care and decided that she needed to be with Jesus and be whole again. She was suffering like she was. We decided to turn off the ventilator, make her comfortable and just hold her. Nobody should ever have to make this decision. Not ever! We waited on our family and pastor to get there so we could pray over her. As I walk through this next part, I may miss words or ramble. They pulled in a rocking chair and stool for me and Bryan to sit on as they handed Ava Grace to me. She opened her big blue eyes and looked at me, like "what is going on mommy". My heart broke into a thousand pieces. Oh God please lead me as my strength to continue is becoming weak. They gave Ava medication to relax her and took out her breathing tube. She was so weak. She watched me as I swaddled and rocked her until her last breath was taken. I handed her to Bryan and he loved on her until her last heartbeat. I have to say that I asked God over and over why He would make us have to make this decision. Ava was surrounded by her parents and grandparents. She did not feel alone, she did not feel pain like earlier that day. She just simply went to sleep. We all cried as our daughter made her transition from our arms to Heaven. She was our little fighter and fought all the way to the end. The dr told us that in all her 20 something years of having to be on this end of life, that Ava's passing was the most peaceful that she had even seen and the quickest. She said that some babies will struggle for hours, days or even a week to pass. Not Ava Grace. She couldn't wait to go to Heaven. She is now in the arms of Jesus and in no more pain. No more surgeries, no more tubes, no more hunger, no more lonliness. God knows that I miss her more and more everyday as the numbness wears off and her absence becomes SO REAL. I packed up her room last week since we are moving and it hurt. Hurt like a heart attack. God please give me strength to get my mind and heart back on the right path. I know that you make no mistakes and you definitely have a reason for blessing me with an  angel for such a short period, but it hurts. It hurts so bad. My family is the only thing getting me through. I gave my little girl her last bath after she passed with one of my best friends in the world. I could not have made it through any of this without her and Bryan. Toni, you are amazingly wonderful. We dressed my sweet little girl in her gown and wrapped her in a blanket. Then we all just held her and each said our last goodbye. I know hours must have passed before I could make myself realize that her precious spirit had left and I was just holding her little body. She wasn't meant for me. She was just on loan. I will never forget the room we were in, the song that was playing, the exact time her little heart took it's last beat or the people in the room with us. I visit her  everyday and still talk to her grave just like I did her, when she was here. I know that she finally got to meet my daddy and brother. I miss them so dear. My brother finally got to meet "our miracle baby", as he used to call her. Her ceremony home was beautiful. Jason Fratesi and Mark Kelly sang so wonderfully. The flowers were gorgeous and Ava Grace looked like a little porcelain doll. It really was memorable. All the people that loved her was there. Her family all wore pink in honor of her. Even her dad and grandaddy :). It made me smile. Her brothers did remarkably well during the funeral. I am so proud of them. I encourage them to talk about her and tell me all about how they feel. Trace loves calling his sissy and watching her videos on my phone. He usually kisses or hugs the phone. :( Landon talks about her and funny faces she used to make. Bryan and I have formed a bond that no other marriage will understand until you have lost a child. I still look for signs that my Ava Grace is with me. Everytime I go to the cemetery a lady bug lands on me. I know that it's just the place I'm in, but I like to believe that it's a little piece of her. I can't thank everyone enough for the encouraging words, gifts and prayers during this emotional  time. Now the healing process begins. Now is the hardest part. Please don't take your kids for granted. Please fight for their every breath. Play ball when you're asked and don't wait until tomorrow to tell them how much you love them. I was lucky enough to tell Ava everyday, all day. Please pray for my family as we walk this road to recovery and still remember to give all the thanks to the Lord Jesus. Without him, our journey would not have have even been possible. I will still wear my Ava Grace and Hayden bracelets because I do have HOPE that one day they will FIGHT for babies with the same condition and not mark them off as incompatible with life. Because I can tell you that these babies know life and love more than most people will in 80 years of life. Last but not least, please do not be afraid to mention Ava Grace to me when we pass. I can't tell you that I will never tear up, but right now I'm at the point that I love talking about her. Walking passed me in fear of making me cry will only upset me. I want everyone to remember Ava Grace and her big beautiful personality. No life, no matter how short should go in vain. If I have anything to do with it, Ava's NEVER will.

Tuesday, October 2, 2012

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)