Well...here we are at the hospital again, the only place I seem to be able to find a minute to do posts. We had to come in just for the day for bela to have a little procedure done. She got her broviac removed from her leg, (horray!! the long 6 weeks of administering her med is done!) and some sutures removed from her incision that were starting to poke through her skin and bothering her. She had to be put out and put on the ventilator, but it was taken out before she was even brought back to us here in the room. I was sooo glad that I didn't have to see her with that darn breathing tube back down her throat. I always get so worried when she's on her way back to us after a procedure for fear of how she'll look. It's so hard to have her taken from your arms peaceful, dressed, and tube free and to come back completley different. But this time was much better than the first two times... she looked pretty much her same beautiful self, minus a broviac and plus a couple little incisions on her chest. She had to have an empty stomach so the poor thing hadn't eaten since 3 a.m. so she was starving by the time she got to eat at about 10.
I think the best news of today was that she weighed in at 8.4!!! That's 6 ounces in 5 days!! She is finally gaining, and I can feel the stress I've been feeling for the past 5 weeks slowly starting to ease up each day that she continues to gain. I think we finally found her specific formula and plan that she needed, boy was it tough to figure out! Amazing that through all of her throwing up, she is somehow still gaining... Her reflux has been pretty bad latley and causing her lots of pain. We switched her reflux med to a little stronger one and hope to see improvements over the next few days.
We hope to be back home tonight. Bela's recovering perfectly. I have lots and lots of pictures to post of her, but they're all on the home computer so I will try really hard to get them up tonight. This is the only picture I have on this computer. It was taken a couple weeks ago.
My Daughter, My Hero.
I love this picture because it shows all her battle wounds of all she has gone through and she still has a huge grin on her face. It shows her amazing spirit. She fought a hard fight for nine months in utero, and has fought for the past three months of her life. Just to give you an idea of how hard she is fighting, 99% of Turner Syndrome fetus' spontaneously abort themselves during pregancy. She had to fight hard to be in that 1%. Of that 1%, most have a pretty minor heart defect or no defect at all, so she had to fight even harder having the most severe of heart defects. There's about a 50% national mortality rate for babies born with HLHS (no other condition), and here she is today. She's a fighter and I tell her every day that she makes her mommy so happy and how proud I am of her for that. I tell her sweet little eyes to keep fighting because soon all her surgeries will all be over and she won't feel so weak or so much pain anymore. I love her more than I can say.
She's starting to feel a little better and be a little easier (she dosn't require being in my arms 100% of the time, just about 90% :)), and she's giving us lots more of those wonderful smiles that make all of this a little easier to get through. In those brief little moments when nothing is hurting her and she shows me that she can be a happy little baby, I feel a sense of renewal. It is so hard to always see her hurting or upset, but time and upcoming surgeries will help her feel better.
Benson slept at Grandma's house last night (thanks grandma!) bc we were supposed to be here at 5 a.m., and when I was telling him last night that we had to go back to the hospital, he looked up at me and said, "I'm happy mommy." I think he could tell that I was sooo worried to tell my sweet little boy that we had to go back to the hospital for fear that he would think I wasn't going to come back home again for days at a time. Hearing him respond that way made me want to cry. Heavenly Father is blessing him to be happy during all this. I worry so much that he is not, and to hear him say that simple little sentence to me was an answer to lots and lots of my prayers latley. I am so grateful for the blessings that are being poured out upon us. i'm always so afraid of this experience hurting our little family, but I was reminded by my angel 2 year old that it will only make us a stronger and a happier family.
On another note, I missed my cousin Cason's wedding this last weekend, and that was really hard for me. I hope he knows that I would've been there in a heartbeat if I could have been. He married a beautiful girl and I could not be happier for him... He has always been one of my best friends and greatest examples. I thought about you all weekend long Case, I love you!