Cardiology update
Thursday's cardiology visit was great! For the past year or so we've been watching a leaky valve and the pressure in her aortic arch. For a little while there they were both considered moderate/severe, and there was talk of cath and talk of early surgery (20-24 months). The last few visits is went from moderate/severe to moderate to moderate/mild, and then on Thursday, completley MILD!! Beth asked us what our secret was, and Dr. Pophal said her echo looked fabulous, better than it's ever looked. If you've ever taken your baby in with that nervous pit in your stomach then you know what hearing that feels like! I wanted to take a couple victory laps around the office! I thought there was a good chance an upcoming surgery might be tentatively scheduled for the next couple months, and the thought of having that planned was just making me sick. But Beth told us that there was no way they were going to do anything with Bela looking as good as she does. Her heart just keeps looking better and better, and so there is absolutley no reason to do anything right now!! HORRAY!! They said MAYBE when she's 3 or 4, but not to even think about it for a long time!
Weight wise she was only up a few ounces, but she was up. I am going to consider that good. Beth isn't worried about her weight anymore and so neither am I. With regards to eating, I am going to start a feeding journal for her that I will be posting. I am going to be aggresively working with her oral eating. I think she is ready. There are a variety of foods she will eat now, and she is eating enough on her own to push her. I am not going to put anything (besides meds) into her tube during the day. I am just going to let Bela eat when she wants and how much she wants and write it all down. Of course there will be lots of assistance and some pushing (no forcing), if Bela really only ate what she wanted to eat it would be an ounce at each meal. It is going to be a lot of work for both of us, but we're going to see what happens. At night I'll give her an extra feed or two when she is asleep to get a little more calorie in her, but during the day she'll be eating all on her own. I did a couple trial runs last week and she did awesome, til she got sick. Her cold is pretty much gone now so yesterday was our first official day. Here we go.. Wish us luck!
Weight wise she was only up a few ounces, but she was up. I am going to consider that good. Beth isn't worried about her weight anymore and so neither am I. With regards to eating, I am going to start a feeding journal for her that I will be posting. I am going to be aggresively working with her oral eating. I think she is ready. There are a variety of foods she will eat now, and she is eating enough on her own to push her. I am not going to put anything (besides meds) into her tube during the day. I am just going to let Bela eat when she wants and how much she wants and write it all down. Of course there will be lots of assistance and some pushing (no forcing), if Bela really only ate what she wanted to eat it would be an ounce at each meal. It is going to be a lot of work for both of us, but we're going to see what happens. At night I'll give her an extra feed or two when she is asleep to get a little more calorie in her, but during the day she'll be eating all on her own. I did a couple trial runs last week and she did awesome, til she got sick. Her cold is pretty much gone now so yesterday was our first official day. Here we go.. Wish us luck!
Comments
As far as the feeds go, I can't wait to hear how it goes. Good luck!!
Andrea
Good luck with the feeding. Bela is just so darling. We are big fans.
Aimee
Mom to Jack, 12 months, HLHS
k, i'm calling you for this afternoon, maybe you'll be free and we can snap some pictures?
P.S. I linked Bela's blog to Scarlett's.
heartbabyscarlett.blogspot.com
Love and Hugs,
Melodie
(mom to Scarlett TOF/PA)