We are a family of 5 and live outside of Nashville on a little farm that keeps us very busy! Our oldest is Hunter, who is 11 years old. Maci is stuck in the middle at 7 years old! Our baby girl Addy has complex CHD with Tricuspid Atresia/Hypoplastic Right Heart Syndrome. She is now 3 years old, has had 3 Open heart surgeries, and is totally perfect! We are on a heart journey where we love her half a heart with our whole hearts! Follow our family through this crazy thing called life!
Our Congenital Heart Warrior!
Wednesday, February 9, 2011
Officially Tube Free
So just a quick update over the last few days...since we changed her formula to Similac Sensitive Addy has become a different child. She has now been without the tube for 6 days, life is finally starting to feel normal. It is so nice not to have to fight with her to take what she will by mouth, check tube placement, bolus the rest of the feed, flush the tube-and then do it all over again in 3 or 4 hours. In between that it was always highly likely that she would pull the tube out, get it caught on something, or the tube end would pop off and one of us would wind up wearing nasty formula. Although I'm still a little paranoid she isnt' going to eat enough,she is eating 22-24 oz a day, I think today we may be tipping the scale at 26oz! For the first time since Addy was born, she is actually crying when she is hungry! You can't believe how much easier it is to wake up at 2 am to feed a baby when she is crying, not just an alarm clock going off! We haven't been concentrating much on working on baby foods this week but I think after next week if she is still doing well we will starting adding more back in once I'm sure she is taking enough fluid. She hasn't thrown up one time but their do seem to be a lot of dribble spit ups since changing formula. This is mostly probably due to the fact that she chugs 4-6 oz in about 10 minutes. She seems unphased by the spit ups though and to me the trade off for the fact that is is taking all PO is worth it. Her next RSV shot and immunizations are next week so we will check her weight then but she looks nice and well fed in the mean time. Being able to feed our baby like a "normal" baby is such a big step in being able to "normalize" our life, it feels as though a giant weight has been lifted.
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