It's been awhile since I've updated on how Bela is doing. It's so nice for me as a heart mommy to read up on the progress of other little ones to realize 1)I'm not alone and 2)she's doing some 'normal' things (for a heart baby).
I can say (with a huge smile on my face) that Bela is doing BETTER THAN EVER, and life is getting so much easier.
Things that have changed since last update:
--Her entire life, I had to feed her every hour..it was the only way she'd keep down more of her food. It's all I did, finish one feed, start another. Over the last couple of months I have slowly increased her amount and have gotten her up to 5 ounces at one time!! It's changed my life! So now I just feed her 5 or 6 times a day over a half an hour and it's amazing.. I have so much time back!
--She still dosn't want anything to do with drinking her liquids, no bottle or sippy cup can get near her lips. I'm coming to grips that she will have the NG for awhile and most likely a G-tube. I'm not sure what to do about it and her lack of eating has been pretty frusterating. I'm hoping and praying that soon she'll decide eating is not so bad.
--She is however, starting to take more bites of baby food. Three days ago was the first time she actually opened up her mouth, choosing to eat. Three times a day I'd put her in her chair for what usually was a VERY frusterating 15 minutes and try everything I could to get a few bites down her. She just did not want to eat. But halleluja, every now and then she will open up for bites, usually just a few and then she's done, but that is a GREAT start! I've learned too that pears and sweet potatoes are all she likes. Bananas are NOT okay with her. She is also starting to eat little finger foods, yogurt melts being her favorite. That was actually the first thing she ever ate. I am SO happy (happy dosn't do it justice) about this progress. I'm hopeful she'll keep eating more and more..
--She's rolling all around and ALMOST sitting. She'll sit for seconds, sometimes up to a minute but still toples over most of the time. She still dosn't love tummy time by any means and usually just rolls right onto her back. So the crawling thing is not really coming along at all. The problem is I get about 3 minutes of floor time out of her before she's crying to be picked up again. I'm the weakest of the weak when it comes to hearing my babies cry and so I give in and pick her up every time. She is the happiest in my arms and MY arms only. This month she decided that no one else is good enough to hold her, not even her daddy who used to be her most favorite. So if she is not sleeping, she's in my arms. Not the best for learning to crawl, (or for my back) but I have to admit I enjoy the favoritism, and I LOVE to hold her..
--Because of her favoritism, it is impossible for therapists to work with her. we are starting feeding therapy this week and I'm gearing up for a disaster. She dosn't like other people very much, especially people who try to make her work. Her home therapy was not working so I actually asked for a new therapists hoping that might help. We'll see..
--Perhaps the most welcomed change...I'm not sure if everyone knows the severity of her reflux.. She threw up every single day of her life about 4-8 times a day, it was a rare thing if she did not throw up a feeding. About 4 weeks ago she just stopped. It was that quick. I don't know what did it, but I am sure glad for whatever it was. That more than anything else has changed life around here. I was so tired of watching her throw up, forcefully, and then scream in pain after.
--We were asked to participate in the St. Joe's Miracle Tour last month and were asked to share Bela's story. After her cardiologist introduced us and explained from the medical side of things how bad the odds against Bela making it looked, we got to show her off and share our little miracle with everyone.. I think it was one of those things that touched us way more than anyone else that was there. Revisiting some of what we went through humbled me. The Lord has truely blessed our family this year.
We were able to make it to California to spend time with me family and it was wonderful...the highlight for me was just the fact that she was 'healthy' enough to be on a trip.. I kept thinking about that the whole time and marveling that she was. I don't know why, but I still have so many memories and flash backs (maybe because this time of year last year was sooo awful) of doctor after doctor telling us that her prognosis was not good. Don't expect to have her long, if at all. I guess I'll remember that her whole life, and its a good thing because it reminds me constantly what a miracle we've been blessed with. I was very emotional at my parents ward when we were home because so many people came up to me so excited to finally meet Bela, the baby they prayed for. Everytime someone tells me they pray for Bela I seriously get a lump in my throat. Someone I admire so much told me that it was an honor for her to have been able to be near such a noble spirit. I was very touched by that. It was a great trip.. We even made it to the beach and Disneyland. Bela was an angel the whole trip, I would have to say she did better than her big brother..:)
I hope everyone is having a very merry Christmas time..
Maybe next year she'll like Santa a little better..