Ava's 3 week Update

I truly try to stay positive in most of my blogs, but this one may be a little less so.

We have been told that AG has a few more complications than previously thought. Not only does she have Trisomy 18, Spina Bifida, VSD, but she also has a ASD (hole between the top two chambers of the heart), abnormal heart valves, and her esophagus does not connect to her stomach. Adding a little more bad news to this is they believe her windpipe is actually attached to her stomach. This adds the additional problem of when she produces saliva it can back up into her lungs, therefore causing pneumonia or even cutting off her air supply. I had debated announcing this to the public, as I honestly didn't want people telling me their opinion on how I should handle the decisions of surgery, but I feel compelled to be honest with all of my family and friends. Bryan and I would definitely appreciate prayers and encouragement as we have to make the hardest decisions of our life on whether to do surgery or not. This may seem like a cut and dry, no questions asked case of do we or do we not do surgery. It's just not that simple. You see, we have been told by dr's from day one that babies with Trisomy tend not to do well under anesthesia or with pain medication. As a matter of fact, they have problems coming off of the ventilator (breathing machine). With our little angel, we have the additional problem of being told that due to Ava's weaken heart, she may not even have the surgery, as her heart may stop on the operating table. Maybe after reading this, you can see our huge dilemma. Ava Grace is fighting her little tail off to stay with us and is doing a fantastic job. I'm very proud of my super trooper peanut. We are just afraid that if we agree to have these surgeries, that we may never see our baby through them. I'm sure you're wondering how she is being fed right now? Well, she is getting all of her nutrition through her PICC line. This is the procedure all of you were praying for her to do well on last week. Which she did! Except, last week her PICC line clotted off and they had to pull the line out. She has since had multiple IV's and the PICC team is currently trying to do another POCC line. The only thing is she can't live on TPN (IV feedings) for long, as this can cause irreversable liver damage and/or liver failure. This is not something that will happen immediately or even within the next week or two. I stay at the NICU all day to suction her when she needs it so that her airway is not occluded and her oxygen sats don't drop. Yes, there are nurses there, but they are so swamped with other babies that it is hard to stay on top of just one baby. Bless their hearts, they are wonderful and I have been blessed with some of the most precious ones. I'm very picky with who I trust to watch her while I take a quick break. That's the protective mommy instinct I guess. Bryan and I have decided to gather all of the facts. Ask all the questions. Then make a decision of what we want to do and what we feel is best for Ava. She is my heart and soul and I am completely, undeniably, head over heals in love with my little girl. I will fight for every breath she gives us. Ava will need 3 surgeries to pull through this. We will have to decide today about surgery. They want to put in a feeding tube (g tube), close the connection between her trachea and tummy and do a closure to her myelo (hole in her back). They are wanting to do all 3 surgeries at one time due to the risk of anesthesia. They are afraid of infection with leaving her back open. There are many babies with T18 that have had a g tube put in and have been sucessful, but not all of them have had the extensive heart defects as little AG or the additional needs for these surgeries all in one. All I keep telling myself is that she is a fighter. She has proven the dr's wrong in so many ways. They said she may die at birth. She is still here. They said she would not cry. Ya'll have seen her crying video on my fb page. They said that she probably would not have mobility to her legs because of her spina bifida. They nurses have had to baracade her in her warmer because she pushes herself everywhere. She does not use her oxygen half of the time, because she takes her finger and pulls it out. I love this little girl. She has surpassed so many expectations. Bravo Ava Grace!!!!

She set us back this week with dips in her oxygen sats and a spell where she went from pink, to grey, to blue. Scariest thing of my entire life!!!! Even with my nursing experience, for a split second, I drew a blank. That was the most helpless and longest second of my life. I can tell you that she did revive and turned back a beautiful shade of piggy pink. All I wanted to do was snatch her up and love on her, but I do not have that option. Our holding time is limited. She seems to get too relaxed and acquire a good bit of secretions (blocking her airway) when I hold her too long and she will drop her sats. I end up suctioning her and having to put her back in her warmer. :( It breaks both of our hearts. I worry that she thinks that she did something wrong or that I'm disconnected with her. Truth is, I am there every minute. I watch her expression, her breathing, her monitor, everything. I don't want to miss a thing. Good or bad, I want to be there.

I can not go without saying thank you to everyone who has prayed for our miracle baby. Thank you to all of our visitors. Thank you to my friends and family that are coordinating the t-shirt sale as a fundraiser for AG's medical bills. Thank you to everyone that has given a donation, meals, snacks, etc. Thank you to Michelle at Clayful Impressions for making me and Bryan momentos of our family and Jennifer Rutledge for our perfect photos. We really hold all of these and other selfless acts dear to our hearts.

Ava Grace has changed our lives forever. Please pray for Bryan and I as we collect, evaluate and decide, with the help of the team of physicians, Ava's plan of care. She is our heart and soul and we will be with her every step of every day, as she is with us too.


"Do not use harmful words, but only helpful words, the kind that build up and provide what is needed"
(Ephesians 4:29)