Hello to you all! I know it has been almost a week since I gave an update on Miss Ava. Life just goes by so quickly.
I took this picture this afternoon, so about 3 hours ago. She is such a good little girl. All SMILES!
She has been having a time with keeping anything down these last few says. She has been throwing up about 6 times a day. I have been doing a lot of online research about bowel obstructions. (I feel I have to constantly be thinking far ahead of the doctors.) The sad part is I feel like we are getting her Congenital Diaphragmatic Hernia diagnosis all over again. I'm constantly scrapping for new information and sifting through the truth and lies about it all. It is so frustrating. Where are all the other cdh kids that this has happened to? How did they do after reherniating? When is this nightmare ever going to end? Will she be able to eat again?
Okay so the start of the week she was throwing up yellow. (This means it was stomach bile, which is a good sign, meaning it wasn't her intestinal bile. That is green.) She did great pooping and things were staying down a little better. Then about two days ago the green throw up came back. I was discouraged. I looked back on her chart and it had been since Wednesday since her last BM. So last night I gave her a suppository. "Houson we have made contact! So there it was a tiny turd. Yea!"
This morning she has already thrown up 4 times. However her "lunch" (four bites of a ravioli) has managed to stay down so far. ("Cross your fingers!") We litrally have to have her puke bucket at the table. She takes a bite and then she squirms, her head turns a funny angle and she grunts a bit. We all try to distract her. I encourage her to take her plate and eat, watching TV. Usually the sight of food makes her make her head turn sideways and then the grunt starts. How helpless can a Mother feel? On the flip side I am thankful for her TPN. She is up to 25 pounds now. Her heighth was 34.5 about a month ago. She is picking up steem. She still babbles and we have a joke. I ask her who I am, she says, "Bob!" I say, "No Mom!" She looks at me with the most precious blue eyes and says, "Bob!" Then we laugh and laugh.
She loves watching Brian and the girls play "Guitar Hero." She has to be right there in front, many times blocking their view. Then she already has mastered the start pad on the "Dance Revolution." It is far too cute. She starts it and then it plays for about 20 seconds and sometimes she steps on the right squares but mostly it says, "Try again." And she does just that!
On a very positve note her stomach is healing rapidly. I mean almost in front of my eyes. I've been doing the dressing change everyday now for the past 4 days. I have to trim the silver Mepilex Ag smaller everytime. It is the coolest thing I have ever seen. Her skin in almost all the way grown over the bottom of her wound. I called the doctor last week and asked if we could remove her stitches at home with Lisa our home health care nurse. He said we could. So on Friday boy did we try but Ava had other plans. She squirmed and cried so we gave up. I'm going to call Josh, Ava's nurse practicianer tomorrow because they are going to have to knock her out to get these 20+ stitches out of her. There is no way around it. They are "supposed" to be disolvable but they sure don't look like that to me. They pull at her skin. They are not infected but she would feel a lot better with them gone. I have been putting hydrol-gel on them to loosen up the skin arounf the stitches to help with removing them. See I'm always thinking. Here is some recent picture of her stomach and also an old one I threw in.
See how the bottom skin is forming over the wound. Isn't that amazing?
This picture was taken January 2008. I thought it might be worth comparing.
The girls and I rang in the New Year's at my parents house with my Sister and her family. It was nice. Brian and Ava stayed snuggled up in our nice warm house! I'm praying 2009 will be a year of total healing!
Here are some pictures of her this last week!
Ava finally meeting my sister Tina's dog "Patches."
We had a few nice days last week so we took full advantage of them. Ava loves to be outside!
Here is my "Rock Star" daughter Mmiss Ava!
I caught, "the look" she is about to get sick. See chicken nugget in hand?
This picture was taken this morning. This is her usual spot until her TPN is done. It is "The Wiggles" all the way!
Thanks for taking the time to love, support, pray and be there for us. We truly appreciate each and every one of you! God Bless and have a healthy new year!