Bela Girl: 8 days old and doing great!!

Saturday, March 8, 2008

8 days old and doing great!!

Sorry for the delay in getting a post up. There are not enought hours in the days to get everything done that I'd like to.. She was kept very comfortable last night but today she has been a little more agitated and seems to be a little uncomforable. It breaks my heart. Her little face scrunches up to cry but she can't get any sound out because of the breathing tube down her throat so she trys to cry but can't. They just gave her another dose of morphine, so she should be feeling more comfortable soon. Her vitals have been staying right where they should be. There's been a couple times when they've dropped or raised, but they go right back pretty quickly. No big scares yet. She is still beating all the odds and exceeding doctors expectations of her. She got her chest tube out this morning. One less tube coming out of her! Her scar already looks like it's beginning to heal nicely. It's hard to believe looking at her that she just had open heart surgery yesterday. She really looks great. Her swelling has been very minimal which is very good. The ICU doc just came in and said they are trying to work towards getting her breathing tube out tomorrow! that would be so wonderful since we have never heard her cry yet. That will be a beautiful sound! I'm so proud of her for being so strong. I can't believe all that she has gone through in 8 days.

Here's Bela on her blessing day..

Bela opening her eyes a little for Daddy.

Bela post op. This was right after she came back from surgery to her room.

This is Bela getting an EKG (if you can see her under it all), testing the rythm of her heartbeats. It looks worse than it really is. She gets on of these every day.

They're running a million tests and watching her very closely...I know I have said this many times but Bela really is getting the best care possible. We've been so happy with the nurses and doctors and they are always right on top of things. It really was a huge blessing for Bela to be able to get the Hybrid procedure...she probably would not be doing as good if she'd had the Norwood procedure. We know they were inspired to know what was best for her. There are only 8 institutions nationwide that even do that procedure and St. Joe's just happened to be one. We also were blessed to have the surgeon from Chicago who specialized in that particular procedure to be here for her surgery. Everything has fallen into place and we just have no doubts whatsoever that it was all supposed to be this way. The Lord is in charge and is guiding and directing everything and we've all been unbelievable blessed.
I'm so glad to be passed that huge hurdle. I'm so glad that now we start working towards getting her well enough to come home. Before her surgery it was all just a waiting game. She has made it through beautifully and as long as everything stays the same we are hopefully on the road to recovery. Her first year of life will be mostly spent in the hospital but we know that and are prepared to do that for her. Pretty soon she'll come out of her heavy sedation and we'll be able to talk to her and love on her. I can't wait!

10 comments:

mandy said...: We are so happy to hear she's done so well after surgery. I check your blog daily for updates and each one is so positive. Carter and Lexie have been blessing Benson's baby sister Bela in their prayers each night. Thanks for all the pictures and updates and the examples you are.
Trent and Mandy; March 8, 2008 at 3:54 PM
Dana said...: Bela is such an amazing little girl and I am so happy that she is doing so well. She is absolutely beautiful!! The pictures of her on her blessing day and opening her eyes for Tanner are priceless! You are so strong and I love to read your updates - what an amazing example of faith you are!; March 8, 2008 at 4:12 PM
Dana said...: This comment has been removed by the author.; March 8, 2008 at 4:12 PM
La said...: all i can say is hooray. i am so happy bela is doing so well. i keep praying for her to stay strong and keep fighting. i want to see her again!! we love you 4 so much!!; March 8, 2008 at 5:08 PM
Jennifer said...: Thanks for the udpate Avery -- What an amazing few days! We will continue to pray for all of you...especially Bela. Mason has been checking on Bela's progress through all of this --Remember how excited he was in Primary to find out you were pregnant (he wasn't too sure about the girl thing...but what do you expect from a house full of boys!) I think he was the most proud to find out the news before the RS Pres.

Hang in there...The updates and pictures are so meaningful to all of us. Thank you for sharing so much with those of us who love you and are praying for your family. The Lord continues to watch over your little girl!; March 8, 2008 at 5:10 PM
Strive to Thrive said...: Your posts and pictures bring back a flood of memories of when our Hannah had heart surgery. She looks so much like Hannah did a a newborn. Blonde, fair skinned, and DARLING!!! From the scrunchy face with no sound when she cries, to the EKG's and chest tubes, etc., it brings tears to my eyes to see what you're going through. I've been there!!! And while I know we have another heart surgery in Hannah's future, she is a healthy, vibrant, almost 6 year old girl who lights up every room she enters. Your Bela is a chosen little girl and will do the same... she will fight through this and make it!!! And you will too!
I love reading your updates, you are so positive. I am so glad your family is there and supporting you. We will continue to pray for healing for Bela and comfort for your family. Get some rest mommy! Give her kisses for us!; March 8, 2008 at 5:38 PM
Matt and Jennae Porter said...: Hooray Bela! you are such a trooper! I love the pictures of her post-op when she doesn't have the breathing tube in because you can see how cute her little mouth and lips are. Hopefully the tube will be out for good soon so we can see more of those cute little lips!; March 8, 2008 at 6:51 PM
Raechal said...: avery, I've been following your situation for a little while and just found your blog. You are being so brave and strong for your family and your little Bela. I admire your courage so much! It sounds like she's doing great! and I am just thrilled to hear it! I hope she continues to improve and can come home with you soon! I'll be praying for your whole family.
Raechal (Owens) Carron Santa Margraita Stake; March 9, 2008 at 9:37 AM
kbhull said...: Tan and Avery,
We are so happy that it is all going so well for your family. I can't read your blog without totally sobing but I check it all the time to see how things are. She is so beautiful and we are amazed by the faith and courage you all have. Know your familyis in our thoughts and prayer.
Billy and Kristy Hull; March 9, 2008 at 2:32 PM
Dallas and Krista said...: Wow. Bela is an amazing little person. These pictures really bring it all home for me and I just cannot imagine the faith and strength you all have to be so positive and just absolutely wonderful. We are so glad to see how well she is doing. Our prayers and thoughts are with you as always. Does this mean that Benson can come over to play sometime soon? :) xo...; March 9, 2008 at 5:02 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.