In the past week I have had two people ask me, "why do you buy things for Ava Grace when she has a terminal illness?" A good friend of mine, who is going through a situation similar to mine, answered this question perfectly. The people that ask this question, definitely are not in the same situation that we are. You look at an outfit and say, "oh that's to old looking for them right now" or "that will suit them better later". For us, we do not have that option, today may be our only day we have with our little one. We can not wait until next year to buy them all the things we want them to have or wait to do the things we wanted to do with them when they were older. So if you see me buying a lot of clothes or toys off of facebook, know that this is what gets me through the day. Just a little hope that my little one will be big enough or live long enough to be able to fit into this outfit or play with this toy. By the way, I have found a fantastic store on etsy.com whose owner is so accomodating. Please look it up, it is called Snugglebug Baby Boutique. They have so many darling things, I could truly get in trouble with my husband over this one store!
I am also making a list of all the things I want to accomplish with Ava Grace. I want her to be baptized, as well as myself and her brothers. I want her to take a bath with her moma (me). I want her to experience sun on her face. These are just a few to name. She has already accomplished one thing, which is go to New York City. She doesn't know it yet, but the big city is not a place for her. She didn't move hardly the whole time we were there, so I don't think she liked it. :) She is country at heart already. I figured out why the Lord allowed my purse to be stolen there. It was because Ava's moma would have hit all the baby boutiques and spent her money there instead of giving it to someone who needed it much more that she (undoubtedly) hehe.
In other news, I have spent the last week searching for a hospital/physician that will accept Ava Grace if she is stable enough for surgery. I have heard my perinatologist tell my husband and I that babies with T18 do not generally do well enough for surgery, but here is my dilemma, my child has a hole in her spine and if it is not closed in certain amount of time, she has a greater chance of developing spinal meningitis. I don't want my child to die at all, but I definitely don't want her to die of something that can be surgically corrected, when she has survived the fight of T18 in itself. I mean that is a GREAT accomplishment in itself. Anyway, according to my perinatologist, there is not a physician that will do surgery on a T18 baby in Mississippi. Well guess what?! I found one! After calling to Arkansas Children's Hospital and Birmingham's Childrens Hospital, both of the genetic counselors spoke with their physicians and sugested that I see Dr. Bofill at UMC in Jackson. Who knew that there was someone so close? How great! Not only that, but Alabama also said that after speaking with their surgeon, that their team would fly here, work side by side with UMC's team for delivery and fly Ava Grace to Birmingham for the surgery. Holy cow! A miracle in itself. Yay!!! So my next step is calling Dr. Bofill and setting up an appointment. I called him and got his receptionist who immediately put me on the phone with his nurse. His nurse in turn puts me on the phone with him. Wow I got a dr on the phone! He said that they have previously performed surgery (successful may I add) on T18 babies. Yay again! So the dr wants to see us tomorrow morning. :) Tomorrow we see Dr. Bofill with his team of surgeons and set up a game plan. We also see the pediatric cardiologist and Dr. Perry. I know this may sound crazy, but I am anxious. I am ready to have some direction. I feel as most of this pregnancy has been full of I don't knows and negativity. For the first time I have some promise of a plan.
Just remember if you are struggling with something in your life, give it to God and realize that your problems could be much worse without him leading you in the right direction. Look up, not down.
"but blessed are those who trust in the Lord and have made the Lord their hope and confidence." Hebrews 17:7
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