bela girl: Bela's Story for PCH

Thursday, August 25, 2011

Bela's Story for PCH

A couple months ago St. Joe's and Phoenix Children's merged their Pediatric Heart Units. I know I'm way biased towards St. Joe's, but PCH just gained an amazing cardiology team. They are very lucky. I'm really excited about the merge, I think it will offer the patients the best of both worlds. They called us a couple weeks ago to do an article to help with their '100% for Children' campaign. I told them that I didn't know anything about PCH, but I will promote Dr. Nigro (bel's surgeon) until I die. So anyway.. I'm glad I was able to share her story again and sing my praises to her incredible doctors.

Here's the link: Bela's Story

3 comments:

Matt and Jennae Porter said...: What a nice story. Seems so simple when it's all summed up in one article. I don't think any article can fully articulate the ordeal you all went through. Bela is a beautiful little miracle in every sense of the word! On another note, we were on the Powell Around 2 weeks ago, and we were thinking of you guys!; August 29, 2011 9:49 PM
Sarah said...: I just happened across your blog this week and have been truly inspired by your touching story. Would you mind if I contact you via email? I would really appreciate it. Thanks, Sarah; September 18, 2011 6:47 AM
Dianne said...: Hi,
I wanted to respond to your questions in your comment but haven't had a chance til now...Ashlyn was about 25 lbs before surgery but I think she is a little down from that now. The main thing I would recommend when Bela is hospitalized is to have any treatment done like blood draws, etc. in a separate treatment room and not in her hospital bed so that she doesn't associate it with something horrible. Of course since she is older it might be easier to explain things to her. Try to prepare her by reading books about going to the doctor/hospital and that doctors and nurses are people who want to help her. Good luck...I will definitely be checking up on Bela during that time. Hope all goes well, and enjoy the upcoming holidays. How is she doing developmentally? Is she behind on anything or just typical for her age? She seems to be doing so well!; October 2, 2011 7:19 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.