Bela Girl: November 2010

Wednesday, November 17, 2010

gone for good!

You know when life is being so good to you you wonder if it's your turn for something to happen? Is that a horrible way to think? I don't think I used to think that way, before Bela's medical issues came crashing down on us one day. I guess I just don't want to take one single day of my life right now for granted. Time is going so fast and there's so much good..

To name a few...

1. Bela is an eater.

Such a simple thing to say, but what a HUGE accomplishment for her! Most of the time I knew that one day I'd be able to say that, but there were also days I was unsure if she'd ever get her tube out. It hasn't been easy since that day she pulled out her own tube. The first week was BAD. She was not eating very much and I was worrying myself sick everyday. We prayed like crazy during those days. There's only so much you can do to get your daughter to eat when she is refusing. She hit a really low point and now looking back, I realize that she needed to get there in order to decide she needed to eat.

There are NO words to describe how good it is to not tube feed or do anything associated with it. I can't believe how easy life is without it and how much more time I have to enjoy life and my babies. Throwing all her supplies away was liberating!

2. Yesterday we had a GREAT cardiology appointment.. our best yet!

Not only was she up from 9.6 kilos to 10.1 kilos :):):):), assuring us that her tube is definately staying gone for good, her echo looked fabulous! Her heart function continues to be better than anyone originally thought possible.

3. Benson turned 5!

That boy is the definition of sweet, I could not be luckier to be his mommy. He loves that he can now say he's 5. I'm not sure how I feel about having a 5 year old yet.. but he's sure fun.

4. Baby number 3 is healthy and the pregnancy is going great.

I can't believe I'm already 29 weeks. Bela's cardiologists did a fetal echo on the baby and reassured me that everything formed perfectly. I could not believe the difference between her heart and Bela's. I'm really enjoying this pregnancy, apart from horrible sciatic nerve pain. I'm so grateful for her health.

5. It's the holidays! What isn't happy about that?! I'm baking too much though. I usually control myself, but something has happened to me latley.. I just made these and they were amazing.. yumm.

From the beginning:

When I was 18 weeks pregnant I was ecstatic to find out that I was having a little girl. We would call her Bela. Just two hours later my OB called to tell me they suspected a problem with her heart, most likely a VSD. After researching that, although I was terrified I knew she had great chances of living a very normal life. So I was sent to get a level3 ultrasound to get a clearer picture. After an extremeley long ultrasound, 4 doctors came in to deliver the news that it was not a hole in her heart, but rather a severly underdepeloped heart. It was called hypoplastic left heart syndrome and she literally had half a heart, the weaker half. It was the most complex and severe heart defect an infant could have. They then told us that her femer bones were measuring 2-3 weeks behind and that she most likely had a chromosome issue as well. They told us that things did not look good for our baby and her chances of living were slim to none. They spoke of abortion. We were going to lose her. It was devastating news and I felt like someone had ripped my heart out. As I struggled to get my body to stop shaking, they performed an amniocentesis. 3 days later we found out she had Classic Turner Syndrome. The first reactions from doctors were not positive. 99% of babies diagnosed with Turner syndrome in the womb spontaneously aborted by 24 weeks. No one we met with had ever heard of a survivor with these two conditions together and could offer very little hope or support. We met with a NICU doctor who suggested abortion. Finally we met with the heart team at St. Joe's. Dr. John Nigro, her surgeon, told me that my baby would be fine. Those were his exact words, I will ALWAYS remember them. It was my first glimpse of hope. I continued to see them regularly as well as my high risk obgyn, and little Bela was not going anywhere..

Bela was born on February 29th 2008, leap day, and was beautifully pink. I was in love, but so scared. She was whisked away and given medication to keep her alive. That night she started to have periods where she would stop breathing so a breathing tube was placed in her throat. I wanted to be by her side every second, I didn't know how many I would get. I was in awe that she was surviving, even if it was just a few hours or days. Her first big hurdle to jump was her first open heart surgery, the hybrid procedure. She was the 3rd baby to ever receive that procedure at St. Joe's, and the first to survive it. She came through with flying colors. Her body got stronger, she fought hard. We took her home two weeks later, another miracle. We had two crazy but beautiful weeks with her at home, then she came down with a horrible infection in her inscision. She was taken back into the OR and opened up to clean out all the infection. After a month, she came back home. Three weeks later, she developed double pneumonia and upon assessing her after she was admitted to the hospital, it was determined that she was in full heart failure. It was another miracle that she was still alive. It took Bela another month to pull through and get better. Then we had one month to get as much weight on her until her next surgery. All we did was feed her, all day long. She reached her goal weight of 11 pounds the day before her surgery. On Aug. 27th she underwent the Norwood and Glen procedures together. We were told that it would be a tough surgery and would be a very difficult recovery. 8 very long hours later, she finally came back to us. She was puffy and blue and did not look like my baby. I felt so weak. During the critical recovery time she had severe hypertention and clamped down several times and had to be bagged to get her heart and breathing going again. It was the scariest week of my life. I felt like I couldn't shut my eyes or something could happen. She slowly made improvements and was finally able to come home a month later, when she was 7 months old. She was on a month long weaning schedule to get her off Ativan and morphine, and it was a very tough time going through withdrawals. By about 9 months she was finally starting to live her life. She continued to struggle with eating so we were still using the NG tube. It was also at about 9 months that she decided she didn't want that tube in her nose. From 9 months to 12 months we reinserted her NG tube several times and day and by the end of those 4 months I was ready to check myself into a mental institution. I'm not sure what was more difficult, inserting the NG tube on a daily basis, or going through open heart surgery. It was that bad for us. It was finally determined that she was NOT going to eat, so I drove her to a GI surgeon and with giant tears, literally begged her to put in a G-tube NOW, that I could not put the NG tube back in one more time. She set up the surgery for the next morning and we said GOODBYE to those darn NG tubes after 12 longs months. Her eating has greatly improved, she loves to snack on most anything, but still depends on her g-tube (mickey button) for most of her nutrition.
We are grateful beyond explanation for the last 2 wonderfully challenging years that our miracle has been with us.