Hey there everybody. Ava has been having really good days and not so good nights. She generally only gets sick once or twice during the day and her nights are filled with gagging and retching. I try to suction her stomach before it has a chance to upset her. Most of the time it works. Lisa the nurse was over this afternoon to see her wound dressing change. She was shocked and amazed at how great it looks. I swear it heals before our eyes. The open wound is down to "2.5 x .5". Really if her body is healing as well on the inside she should be looking great come surgery time in February. The outside of her tummy goes up and down. On Monday it measured 52cm's and today it was 54.5. I think it has something to do with all the gas and gunk in her stomach. She has been farting great today!! ;) Also pooping almost daily! The antibiotic help move things along. Too bad she couldn't be on it all the time! She only takes water by mouth. She used to eat a little bit during the day but she knows that food makes her tummy upset and that it will soon come back up. Smart girl!)
Here is a few pictures from the last couple of days.
She knocked her sister out with that punch!
Okay here she is coming down the stairs carrying her hydration and TPN pump in her baby-pack! I wish we could put her regular TPN in this bag but it is just too big! She is so great about hauling it all around with her.
(To recap all her medicines and extra needs. She is on Protonics and Famotidine for reflux. She is now taking a Phenegran suppository at night for nausea. She also can have Zophran for nausea during the day. She gets a bolus of hydration at 7pm through her IV. She is on central line IV for her nutrition 14 hours at night starting at 8pm. I change her wound dressing pretty much every day. I change her Hicmann line dressing Monday, Wednesday, and Friday. We have only been using the suction machine to suction her stomach gunk whenever we think she is going to get sick. SO of course she still has her NG tube that goes to her stomach. We are not sure when we will discontinue the tube as I feel it helps me be able to do something to make her feel a little better. (Sigh) I think that is all of it!)
So yesterday I got to thinking we have so many followers from the Cole's Foundation that really do not know Ava's "whole" story so in my spare time (Ha, ha) I threw this video together. It is her journey from birth to now. You might want to grab a tissue as most is extremely hard to watch. I hand picked these songs as they best describe her circumstances. My baby what a story she has to tell. ALL through her life God has been right by our side. I feel lucky everyday I wake up and know that each and every one of my girls is safely in my house. I know what true happiness truly is!
I will be adding this video to my updates each time so that if the new followers can watch and "know" our sweet Ava and her fight to survive this fatal birth defect called Congenital Diaphragmatic Hernia. I want all to know that it does exist and it takes many babies lives each and every year. Her story doesn't end here. Her battle with this birth defect is not over nor will it ever be. Will I feel at peace someday? I hope so desperately. We will always and forever worry about her patch but I do know that God is in control and if He is then I can let go and enjoy life with my three girls and my loving husband!
God bless and once again thanks for your thoughts, prayers and loving, caring support!