Eating is still an issue but thankfully there's no talk of her NG tube coming back. Right now she weighs around 16lbs and isn't gaining much at all. She's taking 4 bottles during the day in between 'meals' and I still feed her at midnight every night when I give her last meds of the day. She's probably drinking a total of 20-24 oz total and I'm still fortifying to around 28 cal... I'm not sure yet what we'll do at the 1yr. mark with the formula/pediasure/whole milk decision. She will need more cals than the whole milk alone but right now its a challenge to get her to drink her formula let alone anything else! (thats a whole other post!) Right now part of her formula is covered by the state but that ends after this month leaving us with a bill of $280 a month if we continue with the formula! I put the word 'meals' in quotes because she's not eating much solid food either, not hardly enought to call it a meal! There are certain foods that she likes but she only takes 2 or 3 bites and then doesn't want anymore. Most of the food that we try ends up on the floor. I'm working with our OT therapist trying to figure out some ways to get Teag to enjoy eating more, they're thinking she may have a food aversion in general after all of the tubes, hospital stays, etc... We were joking that she didn't get either side of our families 'eating genes', we all love to eat more than we should! Even though she's not eating as much as she should, she is still happy and thriving so the plan right now is to keep at it and hope that soon she starts to enjoy food as much as we do!
She is trying to pull up to things but can only get up on her knees. She's really good at standing while holding on to something but not quite 'cruising' yet.
Our last cardio appt. was in early Jan. and our next scheduled one isn't until April! We go in every 1 1/2 months for a sat check to make sure she is doing good and last week she was in the mid 80's! Right now there is no talk of any upcoming cath's but I know all too well how quickly that can change, so we are thankful for her health today and have been so blessed to have had a pretty uneventful last few months (heart wise).
Several of our heart buddies are having a difficult time right now and could use some of those special prayers like the ones many of you have said for Teagan over the months. Gracie is a sweet little girl who was born with a heart defect similar to Teag's and has had a very rough road from the start. She was born the day before Teagan and her blog is one of the first ones I followed and met many heart friends through. Gracie just underwent a heart transplant and the new heart is not working like it should. Please take a minute to pray for her and her whole family, you can follow her blog in the sidebar or here. Also say a prayer for Lindsay and Owen who are both waiting for a new heart. I cherish the friendships I have made with our 'heart buddies' and their families- we'll praying for all of you!