Bela Girl: Thank you

Sunday, June 8, 2008

Thank you

It has been several weeks since my last post and I feel like I am past due. I wanted to start with a specific yet general thank you. We want to thank you from the bottom of our hearts, for the meals, the drop bys with treats, watching our Benson Guy, mowing our lawn, helping Avery with Bela, the list goes on and on and I am sure there are so many random acts of kindness that I didn't even know took place. If time permitted, you would all receive a peronal thank you card for everything you have done. We just want you to know that nothing you all have done for us, has gone unnoticed. You know who you are and what you have done and we pray that you have been blessed for your service and kindness because we have.

I have had a great day by myself with Bela. Bela is my HERO. To think a week ago right now, I was standing in this same hospital room pleading with Heavenly Father to let her stay here with us as she went into heart failure. I stood and cried completely helpless considering the thought of her not being with us. That is a constant reality we hope to not have to face, but every day is a struggle. Today her stats look good but for the majority of the day, she has been uncomfortable. It is frustrating to think that we will not know for sure what is causing the discomfort until a week from Monday or Tuesday. The plan is to keep her comfortable this week and complete the cycle of antibitoic before she goes to the cath lab on Monday or Tuesday of next week. The update for today is that Bela is the Best, Greatest, Strongest, Sweetest, Cutest, little 3 and 1/2 month old I have ever met and I am grateful for every day I have to spend with her.

9 comments:

Anonymous said...: You kids are doing such a great job. Your blogs are so wonderful to keep up with Bela. Your calm reassuring voices help settle our nerves and it should be us giving you reassurance. Your family is the best and we think of you everyday, remembering you all in our prays. We send our love, The Yeates's( Carl & Mickie); June 8, 2008 at 9:10 PM
Kara said...: Avery - Bela is so beautiful. I've been checking her progress on your blog and I want you to know that you are in my thoughts and prayers. I love the spirit that I feel when I read her updates. I'm sure you'll never know how many lives you are blessing by sharing your story. I wish you nothing but the very best.; June 8, 2008 at 9:13 PM
Carolyn said...: I just found your blog off of the family (Garrick/Cherrington) sites. I have been reading up on all of your posts. You are an amazing family and I know the Lord's hand is surely watching over your precious baby girl. I agree that I'm sure you'll never know how many lives you've touched and how much your testimonies have strengthened others. She is absolutely beautiful! Brady and I will keep you in our prayers. I hope you don't mind me checking out your wonderful blog. :) (this is Carolyn!); June 8, 2008 at 11:53 PM
ashley said...: ah, i had not checked for a week or so, and had no idea what had happened! scary.
but oh so happy to see that things are getting better.
loves and prayers to you all. especially that sweet little girl, she is amazing!; June 9, 2008 at 12:14 AM
Shannon said...: Tanner your blog always makes me cry. I wish I still lived in Az so I could be of some help, but it is so amazing to read how many people are blessing your lives. I check your blog and read about Bela all the time - hope you don't mind, and she touches my heart even though I have never met her. You can tell there is something special about her and that she has a fighting spirit! I am continually in awe that she beats the odds over and over again - what a blessing she is. We keep her and your family in our prayers and I hope she keeps getting stronger and stronger. I love reading your sweet thoughts on your daughter - she is blessed to have you and Avery for her parents!
Shannon Scorse; June 9, 2008 at 9:37 AM
Lila said...: What a week you have had. Please know how much we love and care for you and pray for Bela's comfort and health as well as each of yours.
Doug and Lila; June 9, 2008 at 1:11 PM
Ashly said...: a family friend of ours had a son with the same heart problem. i just thought you might enjoy looking at her blog and im sure she would LOVE to look at yours too. i hope its okay if i refer her to yours. good luck with everything. thanks for all of the updates on bella. i check back every day to see how she is doing! oh their blog is miraclemason.blogspot.com; June 9, 2008 at 2:30 PM
mandy said...: We think about you guys all the time and your stength still amazes us. Hopefully we'll see the whole family back at home very soon. Trent & Mandy; June 9, 2008 at 10:16 PM
Sally Jensen Interiors said...: Oh...you sweet things...do I get Benson tomorrow?; June 10, 2008 at 12:03 AM

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.