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.