Sorry it's been so long since I've last updated! So this is our tenth week! As I'm sure you all are well aware of now, since my last post we have final closure! She is doing just beautifully and her belly is just wonderful!
Surgery went amazingly well. I will never forget the feeling I felt after waiting for hours seeing the smiles on Dr. Buchmiller and Dr. Labow as they walked towards in the waiting room to announce that she was out of surgery and her belly was beautiful! I wanted to run up and hug them and spin them around I was so happy! Both Dan and I felt like we had just had our first child all over again, calling everyone to announce the good news. We are eternally grateful and so blessed by these two wonderful surgeons who have given our little Gianna the chance to experience life at it's fullest! They will always be in our hearts and prayers.
Her belly looks so good. Even the nurses were surprised at how good it looks compared to other omphalocele closures they've seen. She did get a bacterial infection in the incision and we've been treating that with antibiotics. It's still slightly red on the incision, but it will heal over well. She's still on one antibiotic, which they're trying to figure out how much longer she actually needs to be on it.
Her little belly button is the cutest belly button I've ever seen! I look forward to the day she discovers it and curiously sticks her finger in there and plays with it! Every kid needs a belly button! ;)
She had her little ear tags removed, which also look great! Her tongue was clipped and she seems to be doing well enough with that.
We are weaning her off of her Ativan and are almost complete with that. She is at .3 and needs to be off of it completely before we can take her home. She hasn't really shown any signs of withdrawal, which is very good. She should be off the Ativan if everything goes well by next Wednesday or Thursday. The methadone has not been weaned at all and that is something that we'll be taking home with us and weaning her off of it ourselves.
She still has her feeding tube in, but we're really working hard to get her to eat by mouth. She really started sucking on her bottle for the first time today! I was so pleased! She also ate her first solids yesterday! We gave her a couple spoonfuls of rice cereal. She didn't hate it, but I don't think she was too impressed by it either. Today I gave her carrots, which I think she enjoyed much better! I can't wait to see what she does with something sweet! She only takes a tiny bit of it, but every little bit is one step closer to her getting that feeding tube out!
As of right now we'll most likely be going home with the feeding tube. I'm being taught how to work it and I will be taught how to put one back in if she happens to pull it out. I feel comfortable enough as I've seen it plenty of times. Of course it won't be enjoyable to see her coughing and gagging and crying as I do it, but if having the feeding tube in is the only thing that's keeping us here I'll do it! Pray she starts eating by mouth better!
She's still throwing up almost everyday, but then again the poor little belly of hers is so tight from everything being put in. I think she just has way less room now that there's pressure on her belly and she just fills up a lot faster.
Hmm, I think I covered all of the medical issues. Developmentally she's doing great. I work with her everyday trying to get her to roll over on her own and strengthen her core muscles. I put her in the Bumbo and we play with her toys and read books. She also goes in the exersaucer for a little bit a couple of times a day, which I think she enjoys. Her head gets heavy after awhile and she just lays it down on the edge lol. She likes to move her arms and legs and is starting to talk a lot more now. Her hair is getting longer and I'm able to put it in a little pony on top. She probably weighs close to 17lbs now! She is just such a love!
As for our departure time....well earliest it could be end of next week or maybe the week after that. So excited to go home! It'll be different as we've been here for so long now. Gianna has spent more time here then she has at "home." In a way this has become like home lol. We'll miss all of our wonderful nurses and the doctors. They definitely have become family to us and they will all be missed!
I'll post pictures soon...my little muff muff has just woken up and is looking for mommy!
Thank you for your support and prayers! We are so blessed!
Love Dan Kaite and Muff!
