Bela Girl: Sleeping Beauty

Saturday, September 6, 2008

Sleeping Beauty

Dad here... Bela has had another great day. She has slept most of the day and for the most part has remained pretty calm.

We found out today about 2 other HLHS and Turner's babies that were born and passed away within the last month or so. We count our many blessings and were again reminded that Bela is an absolute miracle. I am constantly asked by friends, neighbors, and even business associates, how she is doing. I usually struggle to explain what she has been through or is going through that day, but now I know my response, MIRACULOUS! Today they took out Bela's art line and hopefully tomorrow the central line will get taken out. Another good day.

Avery was able to hold Bela for the first time in 11 days. Tomorrow will be my turn.

16 comments:

Amy Finnegan {BookshopTalk.com} said...: Wow, how wonderful that must have been to hold Bela again after so long!!

I'm so glad she's doing so much better. I've been reading your blog for months and have been so uplifted by your faith and courage, and your baby's remarkable journey.

:) Yay Bela!!; September 6, 2008 at 9:45 PM
Kara said...: Chris' wife Kara here. We are still checking up on you guys regularly to see how things are going. You are an amazingly strong family. We will keep you in our prayers!; September 6, 2008 at 10:42 PM
S and K said...: HAPPY DAY!! I'm so happy that you got to hold her today! That is so awesome. And I'm so glad she had such a good day. Keep up the great work Bela!!!; September 6, 2008 at 10:57 PM
milenab said...: I am so glad that Bela is doing fine! Heavenly Father does answers our prayers...Isaac is also doing good, he had a doc's ap and they decided to wait to see if the laser worked in his tumor. Hopefully he will be fine too. I always pray for your little girl! These babies are sure very special! :0); September 7, 2008 at 1:30 AM
Auburn said...: Yeah so great! She's is a Miracle!; September 7, 2008 at 6:23 AM
Ali said...: amazing! she looks so good.; September 7, 2008 at 6:42 AM
Dana said...: I am so happy that Bela is improving each and every day - what a miracle and blessing she truly is. I had goosebumps seeing the picture of you holding Bela, Avery - I'm sure that was such a great feeling to have your little girl in your arms again after so long. Love you guys!!; September 7, 2008 at 8:39 AM
lundgrenville said...: She is so beautiful! Sleeping so peaceful. I know the feeling of not being able to hold your own sick child. How priceless it is for Avery to be able to hold her again. Its humbling to follow along in your journey. Bella is truly a miracle for her parents & those striving in the faith to make her well.; September 7, 2008 at 8:45 AM
Branton Family said...: Brilliant Avery. Why on earth I never thought to actually get in bed with Zach and hold him there I have no idea. I was always trying to bring all the cords with him over to my chair. What a wonderful picture, and I am so thankful everything is going so well. Praise God! Amy; September 7, 2008 at 2:10 PM
Johanna said...: I am a friend of Rebecca Butcher and have kept myself updated on Bela's precious story. You look SO very happy being able to hold your precious baby! Please know that I pray so often for all those fighting HLHS babies!!! Bela is absoutely beautiful.; September 7, 2008 at 7:32 PM
The Silly Nilly Family said...: She's a little Angel. Avery you are beautiful inside and out.; September 7, 2008 at 10:36 PM
Maren said...: I am so happy for you guys! She is truley a miracle. By the way your husband gave one of the sweetest testimonies in church. I don't think their was one dry eye. She is lucky to have you two as her parents.; September 7, 2008 at 11:58 PM
Erin said...: Yay momma's holding her little peanut again! Such a great picture of the two of you...you couldn't look happier! So glad she is making good progress...keep it up Miss B!!!! It was great to see you guys at church for a brief second and Tanner's testimony was so touching. He once again helped us put things into perspective and know the Lord hears and answers prayers in His own way and time. You guys are such a strength to the rest of us. Hope there are lots more snuggle pics to come!; September 8, 2008 at 7:54 AM
my life: said...: She is so perfect and beautiful....she looks so comfy in her mama's arms!; September 8, 2008 at 7:31 PM
The Andersens said...: yay for holding your baby!!! I haven't looked at your blog in about 2 weeks so this was all a huge shock to me!! I'm so grateful that all has gone well thus far and that you are already holding her!!! Grace got her gift of a new heart two and half weeks ago and the surgery was definitely very difficult, but you always come away with a renewed sense of gratitude. you are truly such a wonderful family and little Bela is lucky to have such wonderful and loving parents. She is a living miracle and a darn beautiful one at that!!!
we're praying hard for all of you!! love the andersens; September 9, 2008 at 10:20 AM
likeschocolate said...: She really does look great! Her color is amazing. It looks like you will be on your way home soon.; September 9, 2008 at 8:53 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.