6 week Glenn clearance- Goodbye tube!

Well, we finally made it to our six week followup!! Besides an unusally long echo due to a squirmy 5 month old, it was fairly uneventful as far as appts go. Her echo looked good, no sign of restenosis of her aorta and her flow looked great. We won't see cardiology again for 3 months....that's hard to believe. More on that in a few minutes though. The last 5 months has been a roller coaster, although I feel that we have been lucky that we have had more ups than downs. We have been blessed to meet a lot of families along the way that are on similar paths as us. Some of their paths take good turns, and others don't. Every time that I forget for a moment how precious her life is, the reality that another family is dealing with reminds me of just how precious every good day we have is. There are people that feel sorry for us that Addy has been born with her heart the way that it is, but we don't want pity. We have long since accepted that this is what we have been dealt, and I wouldn't trade my sweet girl for anything. Every day with her is a blessing. She is such a joy, her laugh makes time stand still. Her sweet smile is enough to melt my heart. I have accepted with open arms that she will be spoiled rotten when she gets older because I don't know that I will ever be able to say no to her. I feel lucky for every day that I get to scoop her up in my arms and cover her with kisses as she squeals with delight.

The last few weeks have been great, I think we are finally getting to start enjoying our baby like a regular child! She has officially reached the fun stage where every day she seems to learn something new! The list of things that are new is quickly growing...She is officially ticklish. She has found her feet and loves to swing them in the air and grab hold of them. She squeals so high pitched only dogs should be able to hear it. She can now put her own pacifier in her mouth. She absolutely has to see everything going on in the room, and will completely flip herself around or crane her neck around while you're holding her just to see. She still doesn't really like the bottle, but she LOVES pears. Her favorite object is still Bearie Manilow. She is already addicted to television, her favorite thing to watch it in is her jumparoo so that she can jump up and down when she likes something. She likes the sippie cup but mostly just as a chew toy. She is endlessly fascinated with Cookie (dog) and loves to pet her. She can roll OFF her stomach, but not all the way ON it. She thinks that everyone's lap is a jumparoo and attempts to vault herself off it it when you hold her. Those are just a few things that have become apparent in the last few weeks that I love about my sweet baby girl.

So, back to our appointment today. So the biggest reason I was excited about this appointment is because we are ready to be done with this stupid feeding tube! So...the last few weeks we have changed Addy's feeding schedule. I mean, really, how ridiculous is it that at 5 months old we are still easting around the clock every 3 hours...without her telling us she is hungry? We started out by feeding her 4-5 oz 5 times a day and she has done well with this. We are at least getting 6 hours of sleep at night now, and she sleeps like a baby should! Dr Kavanaugh didn't have a problem with basically letting us push her to eat more during the day and not tubing the rest. However, she still wants us to supplement and make sure she gets all her calories and fluid every day. Personally, after doing research I have a different opinion so I'm pretty much just going to do what we feel is right. I mean, between Heath and I we should be able to know how to feed our own kid, right?! We think that Addy is telling us that she is done with this tube too, because she has pulled htis tube out at least twice but up to 4 times a day for the last week. We can barely even keep the thing in now! We have skipped giving her what she didn't take some, trying to get her to get hungry, but I think it's going to take more than just a day at a time. So here we go, no more tube!! We're going to watch how much she takes over the few days and try to actually get her to learn what hunger is. It is time to let her act like a real baby. She only gained 200 grams the last month but she grew at least 2 inches so we're not too worried about her weight at this point. My wonderful friends with normal babies the same age keep reassuring me that their babies don't take that much more than she does, and they're not force feeding them with a tube! So the math that Dr Kavanaugh gave us was that she needs 100ml/kg which would be 600ml a day. OK....so, that's what she is just about getting but we are still on 27cal/oz breast milk & formula...once again, why? If she is getting what she needs, why are we still stuffing her like a thanksgiving turkey? Does anybody else get hungry when they are essentially drinking a milkshake every 3-4 hours? So stay tuned, I'm going to try to keep everyone updated as we go through this journey. Although we love our doctors and hospital that has given our little girl a fighting chance, we are extremely disappionted with their lack of weaning protocol to help these kids get off of feeding tubes. Although we have a lot of medical knowledge, this isn't something that we deal with every day (except with our own child!) at work. We feed them through tubes and don't worry about the ensuing tube dependance that we cause when they go home. Here we go....