Wednesday, July 11, 2012

Surgery Decision

We have decided that we will proceed with surgery for Ava. Actually, we really weren't given a option. I have prayed and prayed for the Lord to direct our decision in the correct direction and it was made evident. Since Ava can't live on TPN (IV feedings) for long and her myelo seems to be increasing in size, we feel that she needs the surgery. The last thing we want is for her myelo to rupture and her to get an infection that may ultimately be the death of her. Her surgery will be taking place this Friday and will last 4 hours. We are so super scared that this week may our last moments with her. There are so many risk accompanying these surgeries, but there are so many benefits too. In the end, the benefits outweigh the risks. The only way she will ever be able to go home with us is if she has these surgeries. Bringing her home with us is my ultimate goal. I want her to feel the love of her family and let her brothers get to know her without wires or bandages. I want her to have as normal of a life for as long as she is with us. She is such a blessing to our family and brings so much joy to us. Ava Grace will need major prayers to pull through this surgery. I know I've asked a lot of everyone by means of prayers, but we really need some heavy praying and believing that my baby girl will keep fighting and pull through these major surgeries. We were given a short life expectation and so far she has been amazing in fighting for every minute. She is not in any pain right now or anything like that, except hunger pains. She gets so fussy because she can't have anything by mouth. This is extremely difficult to watch your child be hungry and not be able to soothe them with food. After her surgery, we will not be able to hold her for two weeks. This will be a battle in itself as holding her is her only means of comfort right now. She will be able to be tube fed a couple days after her surgery. At least she will be able to have a full belly, which will help her sleep and grow more. Currently she is 3 pounds and 4 ounces, but will not gain much weight on TPN. Ultimately we have struggled with our decision, but feel that we are choosing the best thing for her. We can not move forward with her if she is not moving forward herself. She is my little peanut and I want to bring her home, healthy, warm and happy. Please pray for her strength and endurance through and beyond her surgery. We love and thank every single one of our prayer warriors. The Lord hears your prayers and is granting us more invaluable days with our sweet miracle.

"I am the Lord, your God, who will take hold of your right hand and says, do not fear; for I will help you." isaiah 41:14
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3 comments:

  1. Jill BakerJuly 16, 2012 at 3:24 PM

    Following Ava's progress through a friend in Missisippi. We are praying that all went well during surgery. Know that prayers come to you daily from Missouri.

    Jill Baker

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  2. baybuh86July 19, 2012 at 9:39 PM

    Hi, I don't know you, but a friend of mine told.me she came across your blog. I wanted to take a moment to say Ava is beautiful. A good friend of oura has a daughter who was born with Trisomy 18. She just had heart surgery almost 2 weeks ago to close 1 of 3 holes. She is doing great. They took her off of oxygen and upped her feedings. I also wanted to tell you about my son. I had an amnio at 19 wks and was told he had Triploidy and would not live. I didn't like how the dr delivered the prognosis, so we got a second opinion. We were told he actually has the mosaic version of Triploidy, so he had a chance to live, but would probably be stillborn bc he was not growing. My husband, daughters and I prepared ourselves for the worst. At 29 weeks, my water broke and we were told that bc Castan was so tiny and his lungs wouldn't mature, he only had a 10% chance to live. I spent 10 days in the hospital, then got a uterine infection bc of prolonged time of my water being broke. On 4/27/12, Castan was born weighing 1 lb 12 oz. A couple days later, the dr argued with me over Castan's disorder. He then proceeded to tell me that Cas would not live bc he was so tiny. I am happy to say he finally came home on the 13th, and now weighs 4 lbs 1 oz. Kids with disorder may live 1 day or 30 yrs, we take it a day at a time. I know I have been rambling, but I just tell you about Eden and Castan to offer you hope and show you that statistics aren't always a reality. Good luck with Ava. I pray everything works out.

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  3. cbrown86July 20, 2012 at 4:27 PM

    My friend, Samantha, would like you to email her to discuss baby Eden and Ava's journeys. Here email is samantha_salazar417@yahoo.com .

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