Ava came home today! A little groggy, a lot sore--but she is HOME. Funny how her equipment-tubing, pump, etc.-isn't nearly as intimidating out of the hospital setting. Now she is just my sweet, funny granddaughter again. I missed her.
Now that the immediate crisis has passed, it's time to get down to the details of caring for a child who is tube-fed. I have no experience whatsoever. I have lots of questions and concerns, as do Laura and Justin. Ava is still retching and gagging. She is refusing anything by mouth, except for the ever-present Mam pacifier. We tried to get her to lick a popsicle tonight, and even touching the darn thing with the tip of her tongue just disgusted her. Danielle, our local WS expert, says that this WILL pass. We have no choice but to believe her. Danielle has also invited us to a G-tube group that meets at the mall on Tuesday evenings. After the holidays I am hoping that Laura, Geri (her mom), and I can attend. We need all the help we can get.
I am scared, yet anxious to start learning. It's either that or give up having Ava for the weekend, and that is not an option. Laura said that Ava has to return to U of M in a few weeks to get a "button", which should make it much easier for Ava to return to her normal activities-or maybe a new version of normal. Until then I guess we all just muddle through the best we can.
I need advice about something. Laura is not eating, except when Ava is sleeping. She feels it isn't fair to eat in front of her. Laura is a tiny little thing, probably a hundred pounds soaking wet. How can I convince her that it's OK for her to eat in front of Ava without guilt? I don't want Ava to think the whole world stopped eating because she did!
This grandma is signing off and going to bed. I was 3 hours late for work today because I was too exhausted and stressed out to function. I will update again soon, hopefully with some pictures of Miss Ava.
Good night.......
14 comments:
We are so happy that Ava is home!! We are also glad that you are not feeling as intimidated now. That is wonderful. I was going to call you tonight but didn't want to be overbearing. Please call if you need anything, really I enjoy talking to you! As far as Laura not eating. I do understand where she is coming from. Laura is so sweet to be so considerate. Maybe Ava will want to eat by mouth if she sees Mommy and others eating. Maybe it will actually help Ava. At least eventually anyway. She probably is just so full right now with the tube feeds that she doesn't feel hungry. It is a balancing act and it takes time to get things figured out so that she will desire foods by mouth again. Think of it like going to a buffet and eating continuously. After a while you would probably say "I've had enough!" and no longer desire to put anything in your mouth. If she is still on continuous feeds that is probably why she doesn't want to eat anything by mouth.
I have no advice, just our thoughts and prayers... I know you will become the master of tube feeding :) Thinking of you over here~
Oh I'm so happy to hear that she is home!! Things will get better now. Tell Laura the more she eats the more Ava will become interested in it and the faster she will be able to have the g-tube removed.
Hugs to all of you!
Linda
Grandma to Melina WS
I am so relieved to hear Ava is home. Now life can begin again! And in time for Christmas!
You need to encourage Laura to eat. How else will Ava learn about oral feeding if she does not observe her family doing it? Laura is not doing Ava any good by not taking good care of herself. I learned that during our countless hospitalizations. I could not be there for Clare if I was not physically well. More prayers and hugs sending your way. I know your new journey into tube-feeding is just beginning and will come with its own challenges. And I know that you, Kim, one of the most amazing grandmothers I have ever "met" will figure this one out, too!
I am so glad that you have gotten to talk to Danille and Linda. I got to meet them at the convention in 2004. Melina is a sweetheart and tiny like Abi too.
Just like Danille said, if Laura eats, maybe Ava will want to be like mom and eat too.
Glad you are home!!
Noel
I'm so happy to heat that Ava is home. You all still are in my prayers as you continue to navigate through this.
nichole
I'm so happy she's home! I wish I had some advice for you with Laura-I can see myself reacting the same way though. I am praying for all of you - and before long you'll all be experts at this. Please keep us updated....and tell Laura to eat eat eat :) I'll be anxious to see more pictures of precious little Ava. Get some rest.
Kim,
I am so glad she got to come home. I hope she starts feeling better. I agree with Noel, maybe if she sees Laura eat she will follow suit. Wishing you guys a Merry Christmas.
Julie
Oh i am so happy Ava is home!
I am sure you guys will get a hang of tube feeding quicksmart! :)
- I agree with the others, if Ava see's Laura eat it will hopefully make her more interested.
good luck :)
xxoo
I'm glad Ava's home!!!!!!! That is great :) I was getting worried about the little pumpkin!
That is a tough one about Laura, but I'm sure it will pass as Ava gets better and things become easier. She needs to keep herself healthy for Ava's sake. Thinking of you all, Hope Ava has a great birthday, and you all have a Merry Christmas! xoxo Heather
Happy happy joy joy Ava is home! Please give Laura a big hug from me and tell her she needs to take care of herself so she can take care of Ava. So she needs to eat, to be a role model for Ava. Ava will eat again, Laura doesn't need to punish herself for doing what is right for her daughter. She is a great mom, happy holidays.
XOXO
Amy
I am so happy to hear Ava is home. I hope she continues to do well.
We're keeping you all in our thoughts and prayers.
I am so happy to hear the news about Ava being home!
So happy that little Ava is home. Just remind Laura that she needs to be strong and healthy to take care of Ava.You and your family are in my thoughts and prayers and I enjoy your blog. Happy Holdays to you and your family a Happy,Healthy 2008!!!
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