Bela Girl: Awaiting Surgery

Thursday, March 6, 2008

Awaiting Surgery

Bela is doing wonderfully. She had a great, uneventful night. Uneventful is exactly what we want from her right now.. She rested up good for today. My milked was upped again yesterday!! Yeah! She has gotten two more treatments of a dieretic (not sure of the spelling--keeps her fluid retention and swelling down) to make sure she is nice and dry for her surgery. She is exceeding expectations and we could not be more grateful for that. She is definatley receiving the divine help that we have been praying so hard for. Grace has proven so far to be the perfect name for her. THe bible dictionary defines grace as, 'divine means of help or strength, given through the bounteous mercy and love of Jesus Christ.' We know that she will continue to be in His loving hands.
Bela got a name and a blessing last night from her Daddy. It was beautiful and perfect in every way. I'm so proud of Tanner and how he has been leading our family through this. He is here with his little girl as much as he can be and she is totally responsive to his voice. He says she has stolen his heart. We had our family here with us for the blessing, as well as Bishop Bean and his wife, and it was a very sweet experience for us. I will post pictures of it as soon as my mom gets here with my camera..
We are here here with Bela awaiting her surgery right now. There is another surgery going on right now and as soon as they're done with that one they will come get her. Im feeling a little nervous, but at the same time, I know she needs this to live so I'm anxious to take on this next step. I can't believe that its here upon us, we've been waiting for this day for a long time. Thank you for all your prayers and fasting..we definatly feel uplifted by them. I feel positive and hopeful. I will post as soon as we know anything. The surgery should take 3-4 hours, then another hour of getting her stabalized again in her room until we can come back and be with her.
I can't get enough of her. I don't think the pictures do her justice...she is so adorable and sweet. I got to hold her again last night for awhile. She was very peaceful all bundled up in her blankies in my arms. Those moments give me the boost I need right now. I'm so in love with my little girl..
We just heard of the birth of the daughter of some friends of ours that also was born with chromosome abnormalities and HLHS. THey did not know it was HLHS until after she was born. I hope they don't mind me saying this on our blog, but please add them to your prayers. They named her Eden Grace and she was born on the same day as our Bela Grace (leap day). THey must've been best friends before they came to earth and decided to take on their challenges of life together. Her surgery is scheduled for Monday. We are praying for you...

6 comments:

Matt and Jennae Porter said...: Your posts always make me cry too. And you're totally right... as cute as she is in her pictures, she's a million times cuter in person. Thanks again for letting us drop by the other night. Little Bela is going to do so great today...I'm sure of it!!; March 7, 2008 at 10:18 AM
Ali said...: I'm so glad things have been uneventful!! You are all amazing, we love you.; March 7, 2008 at 10:33 AM
Trevor and Kimmie said...: Thanks for the update, Avery. Keep it coming!!; March 7, 2008 at 10:34 AM
Anonymous said...: I love reading your blog and hearing you write about your faith, love and determination to withstand this trial you're really an example to so many of us. I cry almost every time I read through your updates. We will keep checking to see how things are going.
So this is a little off the subject, but play group is at my house on Monday, you're welcome to have your mom drop off Benson.; March 7, 2008 at 12:20 PM
Dallas and Krista said...: I'm so glad you posted... I check your blog like every 2 hours because I am so anxious- I can only imagine how you must be feeling... Thoughts of Bela just reside in the pit of my heart all day long these days. You are so strong and you are seriously wise beyond your few short years- much more so than me, that's for sure, and I have the same amount of years as you :)
We are fasting and praying for little Eden as well. Don't you think it all must be more than mere coincidence? I think you are right- best friends for sure...
So much love to you today. xo.; March 7, 2008 at 12:40 PM
Candice said...: We are praying for Bela today. We have faith that she will get through this. She has so many people cheering for her. Stay strong, you guys are amazing.; March 7, 2008 at 4:55 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.