Dec
14
2008
Thursday December 11, 10:30 PM
It feels like a burden has been lifted! After three months Afton and I decided to get rid of that darned feeding tube in her nose and have a "G-Tube" put in instead. I know it sounds like a trivial decision but deep down we were hoping things would improve on their own so we wouldn't have to submit Lilee to another surgery. Feedings however are about as consistent as the thought process of our 3 year old. One feeding with the bottle is great (50ml) and the next she wont even take the bottle nipple in her mouth. Breast feeding has improved as her strength has increased but since we can't really measure the intake so we call those "bonus feedings". We thought maybe she has a conscious aversion to feeding as the night feedings when she is mostly asleep are usually more successful but again there is very little consistency so it is hard to pin this down. Even despite all the feeding woes we have somehow pumped enough milk into that poor little stomach to get her weight over 11 pounds which is what they wanted before we scheduled our next surgery.
Surgery #2 is scheduled and on the books! It almost seems cruel to be excited about another surgery but we are ready to get it over with and move on. The waiting game is a killer and even though we were told the surgery window was age 3 to 6 months we still use it as a benchmark for improvement. The pre-op appointment will be January 9th and the heart surgery is January 12th with the "G-Tube" placement on January 13th. The plan as it stands right now is similar to the first surgery we will report at 6:00am and should be done a few hours later. Because she will have the "G-Tube" placement the next day they will keep her on a ventilator and sedated. We are not sure how much time we will end up spending in the PICU this time but we do know it wont be near as long as the first time. We are
Other than that heart thing Lilee is a DREAM baby! She smiles all day long, rarely cries, enjoys being held. She likes looking at her brother and sisters and smiles at them all day long as well. Every once in a while we get a verbal laugh out of her and she has really started enjoying listening to herself talk. She wants to touch everything faces, hands, bottle, feeding tube you name it she wants it. For the most part though she just sits there and watches everything with those huge beautiful eyes.