I have to start the update with something that is extremely cuteand funny. Our wonderful nurse Megan showed Ava a chart that showed sad and smiley faces. She asked Ava to point to the one that she felt most like. Ava ALWAYS points to this one....(The saddest it has the number 10 by it and has tears coming out of the eyes.)
We started Ava on Vital Jr. for her G tube feeds. The first run didn't go so well, 30 ml's (one ounce) over one hour. After about an hour on she threw up all of it. So then I told them to only do 10ml's an hour. That started out well but then on the second hour she threw up half od the feed. So now we are backing off yet some more. I am letting them do 8 ml's over one hour then giving her one hour off. So far nothing more has come up. She has only thrown up about 50ml's today. This is better than yesterday! Who knew. I figure it is better to get a tiny bit in her belly than to overdue it and cause her to be sick. What will the docs think? I don't really care. I know Ava and she has to go slowly. It really, really, reminds me of her NICU days. We have to listen to Miss Ava. She is the boss.
I gave her a bath this morning in the baby tub. She was playing having so much fun. I love doing things that make her feel more at home. We did have an accident on the floor before she got in. I have never seen a puddle that large before. I got the nurse and asked how in the world they measure that? She laughed at me.
We want to thank Judi from the Ronald McDonald house in Jersey for sending Ava another shirt. Here she is sporting the RMH tee!
I also put these adorable barettes in her hair today. Not many stay in but these seem to be staying fine!
They are checking to see if she has C-dif. Her stools have been burning or stinging her when she has a bowel movement so we want to be sure there is nothing else going on. She has been on 3 strong antibodics in the last three weeks. So our room is "isolation", as a precaution. We will know for sure tomorrow at about 2 in the afternoon. It is contagious so let's pray it is nothing. She has pooped 4 times today!!! I am so happy that things are moving through. It is just going to take time building her tummy up to the right feedings. Until that time she will still be on TPN. This assures that she is getting the proper nutrition.
My plan is to be out of here on Monday. Dr. Shilyanski will be back and I sure hope he sees things as I do. Ava is full of energy. We went for a walk tonight and she was grinning from ear to ear!
Just to make this perfectly clear we are NOT "leaving for home" only leaving to walk the floor at the hospital. She does think when we take a walk we are heading home. Poor baby...but very soon!
More pictures.....
Ava has been really talking A LOT lately. We can't understand her but SHE knows exactly what she means. I just laugh and she says, "AHHHH!"
I've been thanking God all day (as always) for letting Ava's recovery go so well this time. We know just what a blessing this has been. We know where we "could be" and we feel happy that she is soaring. IN no time at all...okay perhaps some time....she will be feeling as though she felt before.
Oh she weighed 24 pounds today. THAT too is a miracle! Thanks for all the wonderful supportive messages. They make our day. We feel so loved by even those we have never met!
~Terri
6 comments:
Well she looks so good. I'm hoping your going home very soon.
I hope you guys are home soon. Poor Ava and the sad face :( Thanks for keeping us updated and posting lots of pictures.
Ava looks so happy! she just looks like she is feeling so much better. Hope you get to go home soon.
That makes me so sad that she points to the saddest of them all. I hope that it is just that she is drawn to that picture for some reason.
I don't know why I never asked this before...but is the formula they have Ava on something that is already broken down...pre-digested. Kaden was on this type of formula for a long time...it is called Elecare. He is now on Peptamin Jr...I don't know if this is broken down or not. If they haven't tried Elecare, I would recommend them doing so. It seemed to help Kaden out a lot. I just don't know if she is going to be considered too "old" for it. But hey, if she is not tolerating anything else, what will it hurt, she will still be getting something in her belly. Just to let you know though, this formula is very expensive. Our insurance did end up covering it after the doctor wrote out a perscription for it.
With all that said, I hope things start looking up in the feeding dept for Ava. I want you guys to be able to go home soon without the worry if she is going to continue throwing up.
Thinking of you always and keeping you in my prayers.
OH Terri! She is looking really good! And she looks so happy! It is sad she points to the face that is crying!
She is so cute walking all over those halls. She's gonna think she is the Queen of the Ped ward! If she doesn't think that already! LOL She's just cute, cute, cute!
She's in my prayers!
Ava looks so cute with her cute hair clips.
It sad to see her point to the saddest face. I hope she points to the happiest face soon! Thinking of you and have you in our prayers
Post a Comment