Bela Girl: So fun!

Friday, March 23, 2007

So fun!

Here are some pictures of Benson...He's 16 months old and so much fun. I'm always convinced every new stage he goes through will be my absolute favorite and then he gets to the next one and it's even better than the one before. But 16 months is definatley one of the best. He has so much personality and is ALWAYS busy.

Thank goodness for Baby Einstein movies! They are about the only thing you'll ever catch Benson sitting for (almost always with his legs crossed). He loves them. Right now he's on a baby mcdonald kick because of the cows.

He sleeps in the funniest positions...this one is actually one of the more normal ones.

Bensons first taste of acai. He loved it. He kept asking for more. We knew he had a little brazilian blood in him.

Cheeks!

Bumps, scrapes, and bruises...things we're becoming very familiar with. He gets a new one every day. He scraped all the skin off the end of his nose from a nasty fall in this picture. It had healed a lot. He's such a boy...all about getting dirty, taking risks, getting into everything, and trying to do what the big kids are doing, usually ending in bumps, scrapes, and bruises.

Where's the airplane? He finds them all.

He did NOT want his picture taken but he was so handsome!

Playing in sand is one of his favorites.

This is an old picture, but it's one of my favorites.

4 comments:

Ali said...: What precious little face. I love seeing him in action.; March 26, 2007 at 8:18 AM
Meriel Frandsen said...: Oh, my goodness. He is just such a little doll. And really, those cheeks are just too much. Are you guys coming up for conference and/or anything else any time soon?? We miss you all.; March 26, 2007 at 8:37 AM
La said...: he looks too cute in all of these pics. i need to see him soon! maybe eden will be nicer this time.; March 26, 2007 at 7:27 PM
Anonymous said...: mmmmmm lovely cute mouth , look better with my c-m in it though love him to suck me; January 5, 2017 at 4:16 PM

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.