Monday, March 31, 2008

Heart babies

I wanted to write a few words about sweet baby Annabelle who passed away on Thursday. I posted her story on my blog about a month ago. She was born a month before Bela and I followed her journey through her surgery and going home. She was a beautiful little angel and fought so hard for the two months she was here. I didn't know the family well, but have felt close to them as they shared their story, through good times and difficult times. She is back in Jesus' arms, happy and whole.


I also wanted to share Gracie's story. Baby Gracie was born on March 20th with HLHS. She has been fighting for 11 days to stay here, but her little heart may not be able to fight much longer. She has been on an ECMO machine that is keeping her heart beating. On Wednesday or Thursday they are going to stop the machine and see if her little heart might be able to start pumping on it's own. We are praying for her and her family, and ask that whoever reads this post will do the same.


Through this experience, we have been able to come to know the most amazing, strong people, and we have been so blessed through those relationships. The Lord knows what He is doing, and knows what His children need, and although it's hard to see it in the here and now, it will all be for our benefit in the end. We are so grateful for how strong our little Bela has been through the first month of her life. It was very difficult to hear of Annabelle's passing, who was home and seemed to be recovering so well, and we've realized that every day we have with our sweet girl is a day to cherish. We will love our Bela as long as the Lord sees fit that we have her, and we hope that is a long, long time.
We had a doctors apt. today and her heart is still looking great. She is struggling to gain the amount of weight she needs to be strong enough for her next surgery. She needs to be gaining more each day so we are supplementing her feedings and hope that it helps her gain. She's still so tiny, 6 lbs 10 ounces. I can't wait until she does not seem so fragile in my arms. She's eating like a champ, but her little body is burning her calories up so quickly. Other than that, she is looking very good to her doctors. They are watching her every move (through me who has to watch her like a hawk) because they just don't know what to expect since they havn't seen many of these hybrid procedure babies through to successful recovery. She lights up our home with the sweetest spirit, you can't help but feel happy when you're with her. We were grateful for another good checkup today and hope for many many more. We are humbled by the blessings she is receiving.
Something that we think is pretty amazing is that we have now met 4 different babies with HLHS born within a few days of eachother that were given the name Grace. Two as a first name and two as a middle name. We can't help but wonder if there is some special meaning to that and if these baby girls are all somehow connected.

14 comments:

Maegan said...

I just wanted to leave a note. I am a friend of Dana and Ryan Moats and I am a NICU nurse as well. I am praying for your daughter and I hope things go well. We have seen a few of these babies in our NICU in Denver, CO and I truly hope Bela continues to do as well as she is doing. I know Heavenly Father is watching and she must have been a very valiant spirit to choose to come down here in this unique body.

family/friends said...
This comment has been removed by the author.
Lindsay Brummer said...

She is amazing! We are so glad to hear she is doing so well; we are also looking forward to being your neighbors again soon!

Brynn said...

Avery- I was just following Bela's story and wanted to know if it was okay if we linked her to our blog?

Alexjeffreyhomer.blogspot.com

Brynn
Alex's mom
HLHS 11 months old

camillian said...

I still can't read your blog updates without getting emotional. I'm so happy to hear that Bela is doing good.
I have a cute story to share. Ellah has been so funny about not wanting to say prayers lately. Well last night we finally got her to say one. She said the whole thing by herself and it was long (this is the first time with no help). The first thing she said was Heavenly Father bless baby Bela be better... It was so sweet and innocent. So you have a little toddler such perfect faith praying in Bela's behalf too! Let us know is we can do anything to help out.

Krista said...

I just read about sweet Anabelle on her blog. It is hard to believe that this happened. My heart is with her family. We keep praying for Bela everyday. It is great to see her doing so well.. Hang in there!

SMALL and TALL said...

Avery I have been reading your blog for a bit. I admire you for your strength, courage and strong testimony. Thank you for sharing your story as well as a few others.

Brynn said...

Oh- I also wanted to tell you my little sister's name is Averee... Spelled a little different... But totally cute!

Erin said...

Hang in there Avery! The Lord is mindful of your little girl and is watching over her. You are an amazing mother and Bela is lucky to have you. As always our prayers are with you and your sweet family.

Branton Family said...

Avery and Tanner,
I have been wanting to write, but haven't had a chance. I know you know how busy life can be with these little ones. I am praying for you all and am happy to hear Bela is doing so well. Zachary is doing great and continues to grow. We are cherishing this time with him and feel so blessed. Take care and know we are thinking of you. Bella says "hi" to Benson! Amy (room 20!)

Andrea said...

Avery - Your beautiful little Bela is so precious. What a little miracle! We hope and pray that she will continue to grow and get stronger each day. You are incredibly strong.
love, Andrea

P.S. Your mom sent my mom the link to your blog. Hope you don't mind if I check it once in awhile. Exciting about your parents, but I'm sure it will be hard to have them leave.

Akinol said...

SECURITY CENTER: See Please Here

Amanda said...

Avery, I just dropped off your parents at the airport and it was good to visit with them. Your mom filled me in on how things are going with you. Please know that you have been in our prayers since I found out about your sweet girl.

You are such a strong person. Not hard to believe knowing your parents the way I do. Sometimes it's still hard for me to believe you're old enough to be married and have children, let alone challenges that most people couldn't fathom going through. I feel very blessed to know you and to have spent time with you in Brazil. Thank you for your wonderful example.

Brynn said...

Hey Avery,
We live in West Jordan, Utah...It seems like my world just gets smaller and smaller... My maiden name is Clawson. I hope Bela is doing well. It is amazing the changes after the Glenn... The constant worry never ends but the kids seem sooooo much better...So we wish you days like these...