Thank you for all the encouragement and love while we were in the hospital last month!
We went in the beginning of November for a few days because we thought Ansley had an apnea episode but ended up being a seizure manifesting. She had two real seizures while we were in hospital. She was already at the end of her weining schedule for her steroids (for infantile spasms) so we made the decision to put her on an anti seizure medicine.
We then went home and were waiting on a barium swallow study (to make sure Ansley's feeding issues weren't due to because she COULDNT swallow) and waiting for appointments with GI & Nutrition. As soon as we started weining Ansley off her steroids we saw her feeding go back to it's old patterns. She would eat .5-1 ounce and then be done. She just didn't realize she was still
Hungry. We tried EVERYTHING. She was averaging 13-16 ounces in a 24 hr period. It then started rapidly declining. She got down to 5 ounces so our pediatrician (at the time) told us to take her into the ER. That's when it allllll started. In a nutshell, went in, got admitted, hooked her up to fluids and continued trying to feed. We had speech therapists come in and we tried all kind of different bottles, techniques, etc. She just wasn't interested. We put an NG Tube in for 3 days and she was MISERABLE. She totally refused to suck and basically screamed for 3 days. Poor zing. So then GI, Speech Therapist and the Attending Physician came in and we all decided on the G Tube. Ben and I did a lot of praying. We had a feeling it would come to this but still super scary. Decided to do the surgery and she did fabulous. Unlike her momma and daddy who were a nervous wreck. She had a hard time recovering and was in a lot of pain (apparently more pain than normal) so put her on pain meds and started gravity feeds thru the tube. She had a very hard time tolerating the feeds, as she wasn't used to so much food. The Nutritionist and MD were trying to pump her full and she just kept throwing up over and over and over, poor girl! Momma finally had to put my foot down and tell them to take it slow! She wasn't used to eating at all!!! We finally found out a rate and volume that worked and after 13 days we went home!!!!!! Ben and I got home and we looked at each other and said "oh my goodness we have no nurse to buzz if something goes wrong!" That night was crazy with medical supply company and nurse coming to get us all set up.
Went thru the weekend and Ansley did great on the tube. She did some bottles during the day and tube fed at night. Then she started running a very high fever, ended up back in the ER with a UTI. This poor girl couldn't catch a break. Thankfully we got antibiotics and got sent home.
Ansley has been doing wonderfully. She takes most day feeds by bottle and is tube fed all night long. We are working on increasing her bottle volume and she lets us know what she thinks about that! ;)
Ansley is still in Vision Therapy weekly and doing great!!!! Her eyes are open 95% of the day which is AWESOME and she even "tracked" a lighted object with her right eye. YEAH!!!!!!!!!!!
We just started Occupational weekly and Ansley loves her Therapist! She works hard!!!!! We will start Physical and speech in January.
Thank you so much for all the support and love. For those asking how they can help Prayer is most important!!! Pray she continues to thrive and prove the Doctors wrong. If you would like to give, it helps supplement my income as I've had to stay home with Ansley to help take her to weekly appointments and therapies. We have a paypal, benkatierice@gmail.com or a GoFundMe account at http://www.gofundme.com/f3a2n0
Thank you so very much for loving our Fancy Ansley!!!! SPARKLE ON!!!
