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.

Day 2 of tube wean

So, we have been without the tube since Thursday afternoon after Addy's appointment. Thursday she didn't seem to notice a difference, she got most of her fluid for that day. Friday I went to work so Daddy was left at home with Addy & Maci. Heath hurt his back this week so on second thought this was probably not the best idea to leave her with him by himself on the first day of the wean. He can pick her up but it is difficult, and he is still in a good bit of pain. He has an appointment next week to get it checked out, as well as some bone changes in his hip that showed up on unexpectedly on an xray.

Friday morning she didn't take much by mouth and by 11 am she had cried for 2 hours straight and was refusing to eat anything, bottle or food. Heath finally broke down and put the tube back in and gave her a few ounces. That seemed to satisfy her and then she fell asleep and took a nap. That afternoon she took a few more ounces but didn't eat great, by 3 or 4 that afternoon she had pulled her tube out again. This time he didn't put it back in and just let her PO what she would take. By the time I got home she was in a better mood and eating a little better. I think for Friday her total intake was about 12 to 15 oz, 3 was by tube.

So day 2 of our "wean"....just to clarify we had been letting her go sometimes without tubing the rest of her daytime feeds occasionally througout the last few weeks but had been hesitant to really "wean" until we got our clearance and cut her lasix back to once a day....anyway, starting at 1:30am she started eating today. This is the first time that I think Addy has ever woken up in the middle of the night since we brought her home to eat on her own. We have always woken her up when she would have otherwise slept. She took 3 oz at 1:30, 1oz at 5:00am, and 3oz at 9:30am. This feeds have been on her cues for the most part, when she refused the bottle we did not push it. Heath and I went to see Dave Ramsey speak today so she was with Grandma and Grandpa for the day. We have always said that it just seems like Addy doesn't like milk (especially since she will suck down pear juice from the bottle) but we have never changed her formula that we are fortifying her breast milk with. My mom finally decided she was going to do some research because she thinks it is because Addy doesn't like the Goodstart taste...it does smell like sour milk or vomit, either way it's nasty. So she found that the only formula that the ingredients started with corn syrup was the Similac Sensitive...I'm not sure what the other formula's first ingredient was but she says this one was different. So mom bought a can and tried it with her today. Honestly I dont' know if it's the formula or that her hunger drive has finally kicked in but she ate better today overall than she ever has. She took 8 more oz between when I dropped her off at 11am and 6pm. Then, when we got home she took 4.5 more oz for me at home! She took the whole thing without any coaxing or fussing or distractions! I think this is the most she has ever taken voluntarily while she is awake so I am really excited! Today was just the beginning so who knows how she will do tomorrow but I am optimistic. It is late now and she is still in their playing & fussing instead of sleeping so I will update more the next few days.

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....