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)

PICU Day 7

Where to start????? It seems as though we have been on an emotional rollercoaster this week. Our sweet child has been through the ringer. She has had a lung and a half collapse, then reinflate then try to collapse again. The PICU staff has worked aggressively on Ava to help her little lungs strengthen. We had a mishap yesterday and two physicians didn't communicate with each other and doubled up on pulling back AG's breathing tube. This caused her to basically be extubated for a while, until they got the second xray back. In turn making her work harder and made her co2 levels increase. In laymans terms, she went without adequate oxygen for to long. Thus was a major setback. I was quite fired up over this initially and very vocal to my friends. Realizing this wasn't doing anything but keeping me in a uproar, I just thank the Lord that they realized it before it was too late. There has been a lot of praying coming from the PICU this time around. That is nothing new from AG's room though. She is fighting and is still here. That is more than some families have. I have to constantly remind myself that at least I still have a reason (Ava) to have something to fight for. That is a struggle that I am having with myself. since they have moved Ava to a private room inside pICU, I am able to stay with her. On saying that, I am doing this blog from my iPad, so please overlook any grammatical errors. This hospital stay seems to be taking a toll on the family. I'm not sure if it is because of the stress, worrying about Ava's daily advances/set backs or the possibility of being here another two months. That's right, another two months. The drs are pretty much attributing AG's diagnosis to her inability to swallow her secretions due to her incomplete esophagus. We have spoke to various specialist about a fix, whether temporary or permanent. All of our thoughts and consults have lead to finding out it's going to be a "go big or go home" deal, literally. We either do nothing and go home and continue suctioning her every 30 to 45 mins or do the esophageal connection surgery that will demand a 6-8 week recovery period in the hospital. I know most of you are thinking thus is a no brainer, but until you physically see the toll thus has taken on our family, the high risk that are involved with the surgery and the possibility that Ava may have her last days trying to recover from a surgery that adults have a problem recovering from,then you can't see the full picture. I am praying for the Lord to lead mine and Bryans heart to the correct decision, with Ava's best interest at heart. The thought of Ava never going home with us is gut wrenching. My inlaws took Trace to our house yesterday to get some things and the first thing he did was run to Ava's room and look in her bassinet fir her. All I can do is cry. Can you imagine what is going through his little mind? He thinks Batson is our home. When he walks in the hospital he says "moma dada". Poor Landon is rolling with the punches. Without my family and friends jumping in and helping with him, I'm not sure he would be as well off as he is. At least in PICU we are able to schedule a time that Landon will be able to come see Ava. I love the fact that they have a child life coordinator that takes your child and shows them the machines prior to them ever setting foot inside the room. This allows them to touch and ask questions about the equipment so they aren't so overwhelmed by it. What a fantastic idea!? We will hold off doing that though until she comes off the vent. Even though she is able to open her eyes, she is still not able to move her head as freely bc of being taped. I guess my thoughts are I really don't want him to see Ava like that. Anyway, Ava has had some amazing first time experiences. She got to fly in a helicopter and she received her first celebrity autograph! A sweet sweet friend went to a children's miracle convention in Washington and told this celeb about AG's story and why she wore a pink bracelet. He signed AG's pink bracelet!!! Guess who? Mark Willis! Thank you Amanda for allowing Ava to have another first :) tomorrow I am making a list of all the things I want to feasibly accomplish with Ava Grace and make my goal, crossing each one off of my list. Send me some suggestions. One thing I really want to accomplish is to take Ava Grace to church. I want her to be dedicated to the Lord and have that connection strengthened. I was baptized the weekend before her birth and it was an amazing feeling! I miss my church and my preacher so much. Bro Mark came to visit us the other day and I felt so blessed that he took time out of his day to travel 2 hour to just see and pray with us. That's a GREAT preacher for you!!!!!! Please keep praying for our strength, wisdom and understanding. Pray for Ava's strength and uncomplicated recovery. The Lord is good in all times and is making the unexpected time we will and have already had even possible.

"I came naked from my mother's womb and I shall have nothing when I die. The Lord gave me everything I had, and they were all His to take away. Blessed be the name of the Lord! In all of this Job did not sin by blaming God".

Ava Grace is still fighting!

So are each one of these 50 miracle children

Miss Amanda got Ava Grace's first celebrity autograph

Love Mark Willis

PICU

I know it has taken me a couple of days and hundreds of unanswered messages to update everyone, but here it is. As you read in my last blog, Ava was taken to the hospital for what I thought was broken ribs and was sent home. She did ok through the night and by mid morning she was breathing quite a bit heavier. She seemed like she had a lot of secretions but nothing would come up. I called hospice to come out and eval her. They felt that it could go either way and since we had a dr appointment on Monday morning anyway, that it was my call. Less than an hour later, Ava Grace was in full distress. Luckily my cousin, (Doctor) Brandon Oakes, came over for a suprise visit and reinfored mothers intuition. We immediately jumped in the truck and flew to DRMC calling in a botched report on the way. Poor Brandon was probably thrown all over the back of the vehicle with my NASCAR driving skills. Drifting into the ER parking lot, my good friend was ready and waiting. AG was struggling to breath, her lungs were struggling to circulate oxygen and one had partially collapsed. They started line and gave her the first dose of lasix. Her heart was smothering from so much fluid surrounding it. Once they read the X-ray report from the night before, the ER dr said that she was diagnosed with fluid around her heart and pneumo last night. Oh my gosh!!!!! They sent us home with pneumonia and fluid around the heart! I will save my feelings about this for another time when i can prepare a full disclaimer prior to reading. The repeat X-ray showed partially collapsed right lung bc of the pneumo. Upon seeing Ava struggling for air and hearing that she was in fluid overload, it was time to make the decision to intubate or not. Since we knew that her need for intubation was not related to her Trisomy, we decided to intubate and transport to Batson. They know her and her dr's are all there. I will give cuddos to the nurses and Dr at DRMC for being so proactive and on top of everything. From door to helicopter we were in er for about an hour. I was impressed. Once they intubated her, she calmed down and was not as feisty. Air care got to the bedside and made me aware that I could not fly with her because of the isolette they were using was too big, do Bryan and I set out for Batson. We made it to Jackson about 20 mins after the chopper. According to the pilot, AG gave him the stink eye the whole way. That's my girl!!! Keep them straight. Two great ladies were waiting on the chopper to land. They followed Ava to PICU and stayed with her until we got there. Thank you Jackie and Amanda!!!!! Once they evaluated Ava Grace they found out that she had a large air leak around her ET tube and bc of this leak her left lung was not ventilating well, so it completely collapsed. So we are working with a half a lung. They also had to extubate and reintubate, which was a bit scary since they didn't have the right size blade. It took a little bit and was a bit of a struggle, but PICU doc prevailed. The plan of care was since they could not tell if it was true pneumo or aspiration, they were going to treat aggressively for pneumo. They started two antibiotics and had to go up on her vent settings. Even with a half a lung functioning, my little peanut was still breathing over the ventilator. Super proud!!! In case any of you have never had anyone on a vent, breathing over what the ventilator is trying to breath for you is a good thing. It shows that you're not dependent on it to breath for you. They also are doing CPT and IPV. CPT is basically where you take a cup (soft) and beat on the outside of the chest to break up secretions and get things moving. IPV is just like CPT, but it's actually hooked up the the breathing tube and blows strong puffs of air into the lung to pop open the little sacks in the lung, so it will open up. Ava did not tolerate this treatment. Her oxygen and heart rate would fall when they tried to do this with her. She does not like CPT either, but it's helping. After a full 24 hours of CPT and medications, AG is taking a turn for the better. Her left lung is starting to open up and her left lung is not as hazy. She has not ran fever through the entire process. Now she has gone from 100% O2, to 40% O2. They are thinking that if she keeps progressing like she is, then they wil extubate her tomorrow. She will take baby steps to decrease each support measure until she is back to her norm. Right now she is laying in front of me sleeping comfortably and has sats on mid 90's, which is more than the dr wants her to do, so they will most likely decrease her again. I can not praise the Lord for putting people like Brandon, Adam, Dr O, Amanda and Jackie in the right place at the right time. It truly mad this experience a lot more transitionable. Toni has been a Godsend as well. She has been running messenger if I have any questions or issues that they nurse can't answer. I am truly blessed. The Lord just keeps blessing me. I have a awesome and supportive husband, beautiful kids and a nursing background that allows me to understand what is happening. There is no doubt why the lord sent me into this field of study. As far as her plan of care, we will keep doing antibiotics, d/c the ventilator as soon as possible, keep doing CPT, suction and there is no plan for her ribs at this time. Please continue to pray for Ava Grace and for her friend Karis, who is also visiting the NICU. Please pray for strength and recovery as this will be a hard battle to overcome. My little spunky peanut can do it! She is already proving this. I have had my moments as so has her dad. You just breakdown bc you feel so helpless and broken, but if she can keep it together, then so should we! I dive into my faith to send up my prayers ad wishes for complete recovery and sanity. A chaplain for the hospital came by and prayed with us. It was wonderful. Even our pastor made a special trip to pray with her. I love it!!! There has been so many casualties lately, so please cherish each moment with your loved and living ones. In a flash they can be taken. Thank you all for your support!! We love y'all for all the prayers, gifts, food and encouraging words.

“Today I have made you a fortified city, an iron pillar and a bronze wall to stand against the whole land — against the kings of Judah, its officials, its priests and the people of the land.” (Jeremiah 1:18 NIV)

1st ER visit post home

Well tonight was a little scary. While changing Ava tonight, I noticed a large "bump" on her mid-right back area. I called for Bryan to come in there to look. Knowing that this area of concern had not been there previously, I started texting Palliative Care and Neurosurgery from UMC. The "bump" was not a soft bump, nor did it have any redness or heat. You could not move it like a fatty tumor. IT FELT LIKE BONE. Well, like any mother, all I could think about was that she had cracked a rib from all the gagging she does when we suction her. Both of the specialist stated that I should watch the area. Not even an hour later, another spot came up with the same characters as the other, just smaller. So, back to texting the specialist and they responded "go to er now". I told Bryan what they said and off to the ER at DRMC we go. As most of you know, I used to work ER and was not looking forward to going up there on a Saturday night. Ava's immune system is already compromised with all of her diagnosis. I went in and requested they put us in the family conference room and explained the situation. About halfway through the girl at the desk said "don't you work here?" Thank goodness she recognized me, because I was ready to refuse to sit out in the waiting room with people that have the flu and other airborne illnesses. After being "wanded down", we went straight back to the first room. This process was speedy. Shortly after the dr came in, assessed Ava and ordered test. The dr. stated that it was definitely bone that he was feeling, but the xray came back as a bony lesion. Really!? We knew that. They were a little concerned about an area of the lung, but determined that it was related to her heart. They even called and talked with Ava's NICU dr in Jackson. They agreed not to do anything at this time and a follow up appointment for Monday was scheduled. I have to admit that I am not pleased with the unknown bony lesions on my child's back. I am so ready for Monday so that we can  see what Batson has to say. As far as speed, I give DRMC a thumbs up. Good job. Just wish that we knew more. The cardiac concern is now rising, because AG's heart rate has been lower the past couple of days. I marked it up to her growing and of course your rate decreases with age. I am still praying that it is the case. I am so nervous. Tonight I was greeted by some really nice people in the ER that told me that they think and pray for us everyday. How wonderful that felt. In the mist of craziness, we were still reminded that there are good people with the power of prayer. One of the dr's said "I don't know how ya'll are keeping your head straight with everything". Easy........... PRAYER! Please keep AG in your prayers as we head to Batson at 7 am Monday to figure out what is causing these bony lesions on her back. If they get any worse or more before Monday, then we will be "off to see the wizard" before then. For now we are at home and going to try to sleep (at least until her next feeding at 3am).

Phillipians 4:6 
Do not be anxious about anything, but in everything by prayer and supplication with thanksgiving let your request be made known to God.

It's been a while I know

A lot of people are asking for updates on Ava Grace. Well, I started a previous blog and about 45 mins of pouring my heart into it, my phone went blank. Grrrr! Lost everything. Guess it was the Lord's way of saying now is not the time. So, if this blog makes it to your site, it was meant to be. :) we had a scare last week as Ava kept dropping her heart rate for whatever reason. They marked it up to her immunizations. Which scares me for the next set. Since then she has done fairly well. She still drops when she needs to be suctioned out. We were told that we would be discharged soon so we had to do the "rooming in" to make sure we could handle each other. Other than Ava having to change my diaper every 45 mins we were good haha kidding. Although it was a tough night. The bed was gross!!!! My bed, not hers. It had some dried substance on it that I don't even want to guess at. Then, respiratory came in with a huge mixup in Ava's oxygen, etc. All in all, we survived! Woo hoo!!! We also had to come up with a continuous suction device to use at night. It will keep me from having to wake up every 45 mins to suction or worse, not wake up and some devastation have happened. It will also help Ava's throat from being suctioned so often. Home health and hospice was unable to locate one for us so it has delayed our departure from this fantastic "hotel". I can honestly see why a friend of mine calls it "their second home". The nurses and dr's here are fantastic! I have absolutely developed a bond with a special neurosurgical NP, Toni. She is fantabulous!!! Plus we've been here forever it seems. I've forgotten what it feels like to have my family all in one room and cook and etc. So, my fabulous father in law got involved and like most times got the job done and his way! We now have a suction machine on the way. Yay!!!!! Super excited because we can see the light at the end of the tunnel on the hopes of going home. Yay!!!!!! In the most of all of this, I had to do something I really didn't want to. I had to quit my job. I LOVE my job and feel like it is my calling. Now I have been given a new calling and that's to take care of my pumpkin. So, I guess I am still considered a full time nurse and a full time mommy. Hope I don't have to apply for a loan or anything, that might get confusing in the occupation category. :) My job was so understanding and supportive. I couldn't ask for a better group of people to work with/for. I miss them dearly!!!! Next thing was a loss of a dear friend. My sweet sweet future son in law. Yes, it would have been an arranged marriage and Ava's daddy was already saying "hey hey now" when Hayden bought Ava her first dress. You know those daddy figures. While us momma figures are thinking awe how sweet!!! I saw some big plans in mine and the inlaws future haha. All laughter aside, I've never met a stronger fighter than this little man. I am so honored to have been a part of his earthly presence. He brought together so many people. Especially those with a "special heart". If you don't have a "special heart" child, then it's hard to fully understand. People look at you different. They look at your child different. It's almost pity in their eyes. I see this everyday in the NICU. It breaks my heart. I hate for people to stare. Worse than that, I can't stand for people to abandon you when things aren't in their favor. I've met a couple in my day that pretended to be there for me, but I haven't heard from since she has been born or even worse only want to come see me so they can be "in the know". One of my greatest friends is fully aware of these types of people. Please don't be this way. We have a hard enough time on a day to day basis than for someone to add to it unnecessarily. If you are genuinely concerned for Ava Grace and want to know or help, ask. If not, then just read the blog and report what you've read, not what you've read in to it. In conclusion, if you know a "special heart", love them and cherish them, because tomorrow is not promised and today is a gift.
I was walking to my car this afternoon and the wind was blowing and for whatever reason, I looked to the top of the hospital to see a helicopter and instantly was overwhelmed with the sense of calmness. I felt like it was Hayden telling me to stop stressing, that if I took Ava Grace home and she didn't make it that it was going to be ok. He was there for her. At that time a strong wind blew and the song let them be little came on. You just can't plan this stuff. I am so blessed! The Lord knew what he was doing. 5 years ago I was moving to Jackson, but the Lord put Bryan in my life. He has become my rock, my true love and my big hearted bread winner. Followed by Trace and Ava Grace. Somewhere in this mix, he put Lauren, Brent and Hayden in our lives. I never wanted to stay in Greenville, but He knew I would meet the best man in the world for me and create two more beautiful children. he also knew what diagnosis He would give Ava, an the support that we would need from L & B. I must say that they are my miracle. They talk to me through all hours of the night and encourage me when I am down. Hayden, even though he is younger, is my soldier. He proved to me that life is hard, but if you fight, you live for another day with the ones you love. Now AG is my GI Jane. She pushes through, even though the dr's doubted her. She is not out of the woods yet, ad never will completely be with the diagnosis she has been dealt, but she is my sweet angel and is fighting to make it home to meet her brother for the official first time. I can't go without saying thank you to my Aunt Tammy, mom in law Patsy and sis Lisa for doing Ava's room while I am here. They have made the perfect room for my perfect princess. I love yall!!!!

Ps look up Mandy Vowell and add her as a friend! She is a big heart that loves loves loves "special heart" babies!!!

"Be bold and strong! Banish fear and doubt! For remember, the Lord your God is with you wherever you go." (Joshua 1:9)