Bela is doing great!! I feel so much weight lifted each day that she continues to get better. You can just feel the difference in the atmosphere around our house...it is so much different lately than it has been for the last 7 and a half months. While there are things that are still very hard, things are much better. I of course will always worry about Bela as her future is still very unsure, but I don't feel that constant, sick to my stomach worry that has been my companion for the past year or so since we found out about her delicate condition. It was actually almost exactly a year ago from right now that we found out. It has been a long road, seems like FOREVER ago, but it is SO wonderful to be where we are at. She is just really coming alive latley and is so interested in checking everything around her out.. She is laughing now but Benson is usually the only one that can get her to laugh. It is a beautiful sound to hear... I love to see her happy, I longed for it...
Bela's hair right out of the bath is SO curly!! She definaltey got the Woffinden curl. For those of you who don't know my family, every one of them except me has tight ringlet curls. I always wondered if one of my kids would get it, and I think Bela might have it..
She is still coming along really slowly with eating... SHe has no interest in anything whatsoever in her mouth. SHe forgot what her mouth is for... I keep trying to tell her she'd be so much happier without that tube down her throat, but we've still got a long road ahead of us until she is eating enough orally to get rid of it. We are going to discuss the possiblity of a G-tube tomorrow at our appointment... I have mixed feelings about it. While I am extremely tired of reinserting her NG tube down her throat and the constant rashy cheeks, I would love to be able to avoid a G-tube which would require another surgery. She will have another swallow study done in a couple of weeks and then we'll be able to really start working on eating with a speech therapist at home. I really hope she can remember how to eat and make some good progress there so she dosn't have to get one...
These two pictures are kinda funny but I couldn't really get a great shot of her new thing: standing!! She loves to be standing but it is so funny because her legs are the smallest little bird legs... She'll be fussy laying down and all I have to do is lift her up to a standing position and she's so happy.
We have an appointment tomorrow and it will be a long one, complete with an echo and lab work. Hopefully we'll get all good news. I'll post her weight when I get it..I'm hoping for some good growth. Last apt. she had lost weight, but she has done much better keeping her food down the last three weeks.
Other than that, we are just enjoying being together. Bela is such a joy to have at home, we love her more than we can say. Thank you so much to everyone who conitinues to pray for her and follow her story. We are so grateful for your love and support.
These sweet eyes of hers really tell a story.. :) We love you Bela girl!
Wednesday, October 8, 2008
Tonight I feel so happy. It is a result of having a moment to myself tonight to reflect on the 25 years of life that I've lived, and in particlular, the last almost 3 years that I have been a mother. As a child, I always dreamed of being a wife and a mother, so much so that when I got a little older I remember including my future husband in my prayers... that he was trying to live a good life in hopes of meeting me, like I was for him. I dreamed of my children that would one day be mine... I didn't know what they'd look like or be like, but I knew that it didn't really matter, I would love them. I didn't plan on having a critically ill baby, spending months in the hospital, or the pain of watching her suffer, but life never ends up just like we planned it to. And that is okay. Those four little words have taken me awhile to say and then to really believe them. It's okay because, although it's not what I'd planned, it's not bad, just different. There is so much good in my life, and I will choose to focus on that. I just had to put Bela's tube back in because she pulled it out, check it for correct placement, restart her feeding pump, mix milk for her night feeds, and give her 4 meds. And then I just got to stare at her for awhile, kiss her sweet head, and marvel at how blessed I am that she is mine. Everynight before I go to bed I like to go into my kids rooms and just watch them sleep for awhile. Most nights it is an incredibly powerful moment for me. It is usually then that I realize that I am living my dream... how lucky am I? My husband is more than I ever dreamed he would be. I think sometimes I take for granted what we have.. we are two people who complete eachother perfectly. He has been my strength.. I am thankful tonight for him. I am thankful that I have a beautiful son and a beautiful daughter. I am thankful that Bela is here with me. It's hard to put into words what it feels like when I look into her crib and see her smiling up at me when there was a time I didn't know if I'd ever get that moment. For that reason, every moment becomes so special, and it makes life incredibly sweet. Without all that has happened, I'm not sure I would understand that as well as I do, or stop to think about it as much as I do. I don't think I'd take the time as much to treasure the simplest things in life that are the most important and precious. Watching Benson and Bela play together the last few days has been one of those precious moments for me. Benson is starting to let himself get attached to his sister, and she is quickly becoming his best friend. Bela is doing wonderful, she is eating better, sleeping better, and most importantly, she is feeling better. I am enjoying her so much and feel like we are finally just starting to get to know eachother. I have longed for this day to come, and I really believe the worst is all behind us and the best is yet to come!
Playing together.. Benson is sharing his most favorite things with her, but... I'm not sure she thinks they're as cool as he does..