It's been a while, this I know

So many people have private messaged, emailed, called, texted or visited in wondering how our family is doing since we lost our precious Angel. Lately, the days have been more bad than good (I hate to say). I feel my irritation rise more often inside than before. My heart literally hurts when I think of her tiny feet and her sweet little hands that they said would never open. WRONG! My angel opened her hands. Her little fingers so tiny that they didn't wrap all the way around one of mine. I remember her gaze into my eyes and stare at my soul. No words had to be spoken, we "just knew". I prepared myself for the worse, or so I thought. Oh how I laugh sarcastically at that thought now. Nobody can prepare for the loss of a loved one, especially a child. I sit here in tears. My heart overflowing with so many emotions. So happy that she is not in pain, not fighting for life every single day, no more apnea, no more cardiac arrest, no more life long struggles and fighting doctors to believe in the right for life. I anxious, to meet you in Heaven. The one thing that this whole experience has taught me above all others is that I'm not afraid to die. NO, I do NOT look forward to dying, nor am I leaning in that directions. If you lose a child you will understand that death is not an ending, it's just the beginning, of something so perfect. The Lord guides me daily to be a better mother, a better wife, a more "well rounded" person. Without His strength nothing would be possible. Even when Ava took her last breath in my arms, I felt the love of my family there and the embrass of the Lord. I felt whole in that moment. I had the chance to witness and hold a miracle angel in my arms and get to be called her mommy. I will FOREVER say I am her mommy. When someone ask the name of my youngest child, I ALWAYS say Ava Grace. She will always be counted and always be remembered and spoke of often. She changed me in so many ways. Before Ava, my life did not belong to the Lord as it should have, I would never had thought of training for a half marathon in her and her angel buddies honor. I would never have agreed to go on a radio show to talk of the deepest and most gut wrenching experience of my life, in hopes of raising money for such a WONDERFUL children's hospital. Batson NICU nurses and dr's truely set the bar high in the medical field. One of her nurses called me tonight, just to say hey. I miss you guys. Love you Amanda and Jessie! I've worked in the background of the March of Dimes many, many times, but never been in the "spotlight" per say. Ava has given me the strength to tell her story to many people in hopes that they will see how precious these "special needs" and preemies are to us as parents. I am not nervous in the least. I am once again anxious. People all over the world has read Ava Grace's story. To spread awareness of Trisomy and other genetic abnormalities that far away, speaks volumes! A lady in Argentina sent me a message last week and as soon as I can finish translating it, I will send her big hugs. So many emotions, one for each hour of the day.
      The loss of my brother has haunted me lately and made me miss him so much. I don't think I ever really grieved over him, as he died suddenly a month before Ava was born. He was my go to man when my husband was working. He had a way of saying the harsh truth and then sprinkling some sugar on top with just a few words. I miss his face, his hugs and his texts. He always made my day with his sarcasm. He was definitely right to tell me Ava Grace was going to be our miracle baby. That she was bubba!
     I've often been asked "how are your other children"? Well, Landon has his days where he wants to go to the cemetery to see his sister. Some days I catch him with tears in his eyes. Other days he talks about her like she was the best thing since chocolate and that she is perfect in every way. Heartbreaking when your 9 year old tells you that he would take Ava Grace's place in Heaven so she could be here with me. ****Tears rolling down my face**** I can not tell you how precious and tenderhearted this wonderful little boy is. He has been through hell and back this year and still manages to live life as normal as possible. God bless his soul! Trace, well he is a different story all together. He has freaked me out a time or two. He was laying in his bed one night (keep in mind he just turned 2) and made a startled sound. When I turned to him he pointed above my head and said "zizzy". He continued to point and followed his finger with his eyes, moving higher and higher until he said "zizzy go bye bye". If that doesn't give you chills, check your pulse. I instantly started crying. After a few experiences similar to this, I absolutely believe that children can see things we can't. They haven't been "mind altered" by the non believers in this world. My child saw something and amazingly he saw his "zizzy" floating above me all these times.
    Ava Grace is still with me in spirit and in my heart. I will forever carry her in my heart, until I can hold her in my arms in Heaven. The Lord did me the greatest favor by allowing me to meet, hold and get to know my little spunky peanut before He took her home. I only pray that the people that He has chosen for this same journey, can find some peace in knowing that God only chooses the parents in "need" of something "special", to care for a "special needs" baby. He knows that we will give them the utmost attention and dedication that a person can and will. Not only with a open mind, but a open heart as well. God bless everyone who has walked side by side with us and especially those who have and will, walk in our shoes.

 I am wearing a pair of shoes

They are ugly shoes. Uncomfortable shoes. I hate my shoes.
Each day I wear them, and each day I wish I had another pair.
Some days my shoes hurt so bad that I do not think I can take another step.
Yet, I continue to wear them.
I get funny looks wearing these shoes. They are loo...ks of sympathy.
I can tell in others eyes that they are glad they are my shoes and not theirs.
They never talk about my shoes.
To learn how awful my shoes are might make them uncomfortable.
To truly understand these shoes you must walk in them.
But, once you put them on, you can never take them off.
I now realize that I am not the only one who wears these shoes.
There are many pairs in this world.
Some women are like me and ache daily as they try and walk in them.
Some have learned how to walk in them so they don’t hurt quite as much.
Some have worn the shoes so long that days will go by before they think
about how much they hurt.
No woman deserves to wear these shoes.
Yet, because of these shoes I am a stronger woman.
These shoes have given me the strength to face anything.
They have made me who I am.
I will forever walk in the shoes of a woman who has lost a child.
Author~ Unknown

                                   Beautiful baby girl! Kissing you through the stars and clouds!

                                 My whole, sweet family all together. How I miss these days.

                                                    My brothers seeing me for the first time

                                           Move your paci Ava, I can't see your sweet face

                                           She almost got her little fingers all the way around

                                                              My mamaw loves me :)

                                             One of her first smiles that I caught on camera

                                                                                                                                                                He absolutely proved that! Thank you

 Ashley, Amanda and Amy for all the little notes and signs you made of encouragement. I love you guys so much!

      University Medical Center / Batson Children's Hospital will always be true heros in my book!

They've set the bar high for others to attempt to reach for. Good luck other guys! "skillz" as the nurses in NICU say. :)

                                      "That's Ms. Spunky Peanut to you" :) "Diva of the NICU"

                                                                    Absolutely

 The shirt that I will wear in the Color Me Rad race, along with some other "pink and blue" for Ava's little boyfriend that's with her in Heaven. Love you Hayden!

 

The shirt that Landon and Trace will be wearing during the race. "Delta Angels" on the front. (We don't want to get our other shirts stained with paint.

 

                                            Borrowed this from Trisomy Angels Memorial

Wishing your family a perfect holiday

So much is going on these days in the Oakes' household. I can honestly say that the Lord knows that if he doesn't keep me busy, then I may fall to pieces. I have to admit that most moments, I have it all under control. Lately I am going through a insomnia phase and that leaves me lots of time to think of "what might have been". I look at my Christmas tree decorated with her pictures and her pinkness and it seems so bittersweet. Somedays I think, "oh man, what I wouldn't do to have my precious angel back at Batson, smiling and happy". God knows I miss her beautiful eyes and smile. She was the happiest baby despite every hurdle life threw at her. Here I am whining because she is in a better place and not with me. While she was here, she made such a large impact on so many people. For that I am PROUD. My baby girl lives on through her story. One that I almost didn't share, as blogging was never my thing. Blogging seemed to bring more people to Ava's story, including the NICU and PICU nurses that didn't get the chance to care for Ava. They would still come by to see Ava in her cute little outfits and pray for us. While sitting in the NICU, Lauren called me one day and asked if I would like to do a toy collection for the kids in Batson. Immediately I was intrigued at the idea of doing for other children like Ava Grace and Hayden. Wow, did this idea ever take off!? Our community stepped up and has made this toy drive a huge success. We set our goal to fill up the back of 2 pick-up trucks, and so far we have almost doubled that goal. We are so happy with our fellow Deltans (I must have made up a new word). Our toy drive will conclude on Saturday, 12/15/12 at Oakes Toyota. We are having a fish fry, all donated by Oakes Toyota and Grandma's Best. All proceeds from the fish fry and the Santa photo booth are going to Batson. Did I mention that Toyota and my father-in-law have teamed up to make a $10,000 donation to Blair Batson Children's Hospital in honor of Ava Grace and Hayden? What a wonderful family I have. I love and respect them so much. All of them. My boys have even jumped on the band wagon and cleaned out their toy chest and went a little overboard with  donating the toys that they never opened. Trace really makes me smile by looking at the Christmas tree and saying "sissy" (pronounced dissy). I love that he recognizes her in every photo. He spent the most time with her when we brought her home for those 12 WONDERFUL days. Bless Landon's heart. Everytime he sees anything pink or finds an opportunity to color something pink, he gives it to me to remind me of Ava Grace. I can not wait to give these toys and money to the children and their families in our two angels honor. Such a blessing to have this experience. For everyone that has already donated.......Thank you!!!!!!

This holiday season will be the most difficult one ever. Since my brother passed away this year, Ava passed away this year, my sister in law, neices and nephew moved away and my grandmother is spending Christmas with my aunts, my family is seperated. This hurts my heart deeply. I feel lost in a sense. I thank the Lord for my mom and older (yet good looking 'wink') brother. I will at least get to spend some holiday time with them. It's amazing to see the Lord's plan unfold in front of me. We were pregnant with a critical baby when my brother died, which made me make myself keep calm  and collected so I didn't go into labor. We  moved into a new house the week after Ava passed, which has kept me super busy at nights and after her funeral. Then I had Trace right before Christmas 2 years ago, so planning his birthday party after my house was in order, kept me busy. Next, it was my year to host the Oakes' annual candy swap, which made me run around like a cheetah on ice skates. Next is the 2 kids Christmas parties, the 3 businesses Christmas party, a weekend of company, fish fry for AG and HB, delivery of toys to Batson, another week of company, then 4 Christmas celebrations. Whew, I'm out of breath already, but guess what!? I won't have time to wish the pain of this earthly life on my baby girl. See, the Lord has a plan for us. We may never live to see what that plan is, but in my case, I am getting to see a glimpse.

I have had a couple of people address me regarding speaking to other Trisomy moms. I would like to say that it is an honor. I had my first encounter with a T18 mom while I was in NICU. We have continued to stay in touch. Her baby did not make it passed our stay in NICU, but she thanks me often for being there for her. I wonder if this is a calling or was it that I was just given the right words to say at the right time? Since then, I have made a lot of connections with other t18 parents. It is so rewarding to get to share Ava's story with them and hear their astonishment of her will to survive. I am so proud of my spunky peanut for all of her strength and accomplishments and now, so are they.

I can't believe that we are almost in 2013. I've had people tell me, "you've just had a bad year". At first, I would agree with them. Now, when someone says something like this, I just smile and say, "it was the best year of my life". I got to meet 2 earthly baby angels. My brother went ahead of my only girl so that he could watch over her and introduce her to her grandpaw Jim. I met a lot of strong people and made new connections with parents of children like my own. I was reintroduced to the importance of Faith and the Lord in my life. I was made drastically aware of the importance of every second with your family and children. Made all too aware of heartache and warmth in the same moment. I got to hold the MOST PRECIOUS CHILD that has ever stole a heart.  She is not gone, only physically. Her handprint impression is on every wall in my house. Her pictures surround us like light. Her videos are in my phone. Her story is on the net. Her cry and coo is in my head. Her smell is in my mind and her presence is in my heart. I did not lose my daughter this year. I gained knowledge, love, faith, hope and best of all........... I gained the honor of being called Ava's mommy. God bless everyone of you that has stood beside us down our rocky road. Those of you that has ignored the opportunity to pass judgement on any of our decision as parents. All of you that has read and shared Ava Grace's story with a complete stranger or the person next door. Through you, my angel lives. Through you she bloosoms and through all these experiences, my family grows.

                                                 Merry CHRISTmas from the Oakes family

                                   My 3 favorite people's hand/footprint shaped like an angel

                                                   Merry Christmas sleeping santa angel

                                                3 Stockings for 3 precious kids

           My ornament from Jennifer, handpainted by J. Powell. Favorite piece in the whole house.

Ava had a precious little girl sit at AG's grave (who has seen her pictures) and play dolly with Ava. She even left one with her, so that Ava Grace could have it. Ava's first play date. :)

      Thank you guaranty bank and Jeri Anne for doing a Ava Grace tree. It looks so PERFECT!

The pink ribbon is my piece of AG and the angel on this tree is a reminder of the angel I have in Heaven. It's renamed after her too, in case you were wondering.

           Thank you Red Leaf Pottery for my precious imprints. I have them mounted everywhere.

                                      Trace and Landon telling everyone Merry Christmas!

                    My earth angel. I will hold you in my heart, until I can hold you in Heaven.

 

Just a few of the toys donated in honor of Ava Grace and Hayden Brent. All of them will make so many hospitalized kids happy this holiday season.

In Honor/Memory Of Ava Grace Oakes and Hayden Brent Casavechia

Many people are preparing for the Holiday season. Brent, Lauren and my family will push through the holiday season through helping our second home, Batson Children's Hospital. They played such a large part of our life and making it through what we hope to be the hardest time in our life. NOTHING COMPARES TO LOSING A CHILD. The palliative care team (helps prepare for the inevitable) and child life (helps with activities to calm anxious patients and siblings for what they are about to experience) teams were truly a blessing to Ava Grace and Hayden. They truly gave us love, HOPE, and SUPPORT. We are looking forward to giving back to them. Many people have asked what they can do to help in memory of Ava Grace and Hayden. Batson's children are in need of so many things. Here is a list of needs for the Palliative Care floor at Batson. They will share these items with other floors also.

The following letter is a list of needs for the Batson hospital floor of Palliative Care:

· A slight reminder: children actually LIVE in the hospital. Some of these children have been left by their families because it is too much for them to handle at home or because "they just don't want to have to deal with a special needs child". I have actually heard someone say that. 

· Hey lady! Okay, so here is the list. I have included the restaurants that are around the hospital as well as materials that I have on my 2C wish list for patients and families. Thank you, thank you so very much!

Cups, McDonalds, Backyard Burger, Subway, Chick-fil-A, and Wendy’s gift cards (20 dollar Maximum)

New Release movies (Baby Einstein up to Teen)
DS games
iTunes cards
Hobby Lobby, Wal-Mart, Target cards
Rattles and teethers
Infant/Toddler toys with lights and music
Karaoke CDs
CD players (small ones) and popular CDs
Xbox 360 and Kinect GamesPrepaid Visa cards (20 dollar maximum)
Word search and crossword booksArt canvases of all sizes
Bedside arts and craft projects (Color Wonder, scratch art, sand art, etc)Cribside Mobiles (Fisher Price aquarium types)

Journals
Crayola Markers
Social Games (Catch Phrase, etc)
Look and Find/I Spy books
Party Blowers, whistles, kazoos etc
Small photo albums
Disposable cameras
Photo paper
Scrapbook materials
Hand and footprint kits (can be found in craft sections at Hobby Lobby/Wal-Mart)

Lauren and I will be taking these gifts to Batson sometime in the first few weeks of December. We are hoping that we need multiple trips from all the generosity. If you are interested in donating gift cards or anything else to Batson in memory of Hayden and Ava Grace, thank you! GIFT CARDS ARE A HUGE HELP AND NEED TO THE HOSPITAL. MAXIMUM OF 20 DOLLARS PER GIFT CARD. MANY FAMILIES SPEND DAYS, WEEKS, AND MONTHS IN THE HOSPITAL (LIKE US). THESE ITEMS HELP FAMILIES financially. SECOND, I ASKED ABOUT CANVAS’, THE CHILDREN THAT LIVE THERE LOVE PRETTY DECORATED CANVAS’ SO IF YOU LIKE TO PAINT GO FOR ITJ ALSO BLANK CANVAS’ ARE NEEDED AS THEY LIKE TO PAINT THEMSELVES. GIFTS/TOYS/GIFT CARDS cannot be wrapped!

Lastly, teachers: PICU and NICU cannot receive items. We were thinking of allowing children to do Christmas cards/ pictures to pass out to these families. Merry Christmas is allowed on these cards. So if you and your class are interested in making Christmas cards, GO FOR IT J We encourage this!!!

You can mail to either of us if interested in participating. I know you will place a smile on each of these children’s faces. Thank you for your faithful prayers and loving hearts.

Amy Oakes

C/o Batson Children's Hospital

511 Metcalfe Rd.

Greenville, MS 38703

 

Lauren Casavechia

C/O Batson Children's Hospital

235 Cattle Ranch Road

Benoit, MS 38725

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.

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)