Friday, May 18, 2012

The date is set!

So, let's see where to start.......We have made a date for Ava Grace's c-section birthday of June 18th. Yay!!! Upon her BIRTHday, we have a lot of huge decisions to make. After talking to the team of physicians from UMC, we have been made aware that we will decide at that time whether or not to close the hole in her spine. This all depends on her short term prognosis upon delivery. It is possible that she may have to have a shunt placed from her brain to her abdominal cavity as well. This seems to have freaked a couple of people out because of them thinking this would be a visual shunt. The shunt is not visible to the eye. It is internal and unless we tell you, then nobody would ever know. I tell this addition, because I have been approached with misinterpreted statements (regarding this) from other people. If she has the open neural tube defect closed then she will be in the NICU for a minimum of 3 weeks. We will not be able to hold her during this time period. This absolutely breaks mine and Bryan's heart as we not promised tomorrow and we are scared to have the surgery in the chance that we can lose her while she is in there and not have had that time with our little earth angel. The next big decision that we have made is we dont not want her on a vent. Some babies with her diagnosis have problems remembering to breath and just stop. It's kind of like Sudden Infant Death Syndrome, except it is expected with her diagnosis. While many babies go on "life support", we have chose the option to not do this. Many babies never come off and a lot of them develop secondary infections, making the whole process and suffering harder on their little bodies. This does not include, the possible damage the tube can do to her airway. This was a very hard decision to make and I do not think that I could have came to peace with it without Jackie from the Palliative Care Team. They are true advocates and do not sway to the negative aspects of the situation, as many of the perinatologist have. Bryan says that they just don't sugar coat it for me. I don't believe that they have to do that for me, but try to be sensitive with your words. Don't say "your baby only has a 10% chance to make it", add "but we are going to evaluate her and hope for the best". Words can kill the soul and the hope of all. Now as far as her heart, the Pedi Cardiologist was fantastic. She is treating Ava Grace just as she would any other baby. She has told us that she will do a ECHO on her as soon as she is born to re-examine her heart and will do surgery to correct the VSD when she is 3 months. How fantastic!? Some dots of light shining through the walls of the tunnel. She also told us that her heart defect would not be what takes her out of this world. (That's the way I can handle hearing things) This is good news to me.Now, in saying all of this, here is what I really want everyone to know. Don't avoid asking me questions about Ava, please. She is my daughter regardless of the outcome. She will always be my first daughter and I love her through any of her "extra specialties". Talking about her is my therapy. I enjoy treating this pregnancy as normal as I can. She makes me smile and cry with joy when I see her on my ultrasounds. She kicks me, well technically punches me all the time, which is not "normal" per the dr's. T-18 babies usually do not move ofter, per dr's. Well this one does! She is a fighter, like her mom :). I will fight for her last breath. Don't avoid the rubbing of the belly, like a little budda doll. Normally, I don't care for this, but in this pregnacy Ava loves to be touched. If Ava loves it then so do I. Some great things that I have experienced recently was watching her on the ultrasound put her thumb and pointer finger up, pull her downward and act like she is shooting something. This cracked me up!!! She also has smiled so much. Makes me one happy momma. She was caught of camera practicing breathing. How awesome?! I am super excited to go back and see her sweet face again. This time, I am going to try and take Landon with me. He is so excited to be having a little sister. He knows the possiblities of the situation and is still excited. Maybe we all need to be more like a kid. Hopelessly optomistic and niave. I am preparing for the worst, but hoping for the best and until my angel shows me different, no WORDS can change that. Thank you all for your continuing support, love and prayers. They are very welcomed and needed! P.S. Thank you all for your prayers through the loss of my brother. I miss him everyday. He was a big encourager with Ava Grace, but at least I know if the Lord takes my baby girl sooner than I would like, then she has my dad and my brother there to help Jesus spoil her.

This is what I pray for!
My sweet mother in law gave me this for Mother's Day ;)
My sweet necklace with my beautiful kids names and birthstones
This is one of my wonderful brothers, Doyle. He is my heavenly brother that is always in my heart.
This is my oldest son, Landon. He continues to amaze me through his outpouring love.