I have a few updates on the girls and especially Lilah. We received a denial letter in the mail a few days ago for Lilah's RSV shots. If any of you are knowledgeable about these shots, they are EXPENSIVE. It is a series of five shots total and run about $3000-$3500 per shot. According to our insurance company she was denied because she was born after 29 weeks. Of course she has congestive heart failure and is on a medicine cabinet full of heart medications she takes daily. So to say the least I have been so scared and stressed out. The girls are suppose to start child care on January 12th. How can I put her in a center around sick kids without protection? Well I can't. After numerous phone calls to family members out of state and in state I might have found a solution. I have an aunt in California who can come down and stay with her for a few weeks. Al's mom can come for a few weeks and my sister is available also. If we can just get her through RSV/FLU season I would feel better about daycare.
Today was also her Cardiologist appointment. Al took her today because I was home with Olivia and Cierra ( Cierra had her four wisdom teeth pulled yesterday). Well Al called and said the appointment went great. Lilah is weighing 6lbs oz. The Cardiologist is also writing a letter of medical necessity for Lilah and sending to the insurance company. She feels very confident they will accept the letter and cover the remaining shots for her. I hope so..... We are also increasing feeds from 42 mils every three hours to 52 mils. Al and I have been waiting for this appointment to increase her feeds, but this little girl has been cranky and wanting more food. We didn't want to increase the volume because it could be dangerous and put to much liquid in her lungs. But, luckily her lungs sounded good today and now she can eat more food and get bigger! The Cardiologist said we can also cut out the 2 am medications (which is huge) and she is changing some of her other heart medications. Depending on blood work today, we might even be able to stop two of the medications! She goes back in three weeks and they will make the determination on when her surgery will be. The doctor seems to think it will be in January. Let me tell you what an amazing, strong fighter my daughter is! I am not sure how Al and I got so lucky and were blessed with these girls.
It is so hard for me to see people complaining and bitching about things that are so small and insignificant anymore. Then I look at my life and know it is the only thing I do have control over and every single day I am so lucky... so very lucky... to have my beautiful family.
On a different note:
I know I haven't mentioned this in a while and I apologize. For those of you still trying and going through the disappointment of failed cycles. I do think about you often. I still read your blogs and I still cheer you on. I know I haven't commented a lot lately, but you are not forgotten. As I have always said, please keep fighting for what you deserve and are entitled to. Please keep going forward and especially through the darker hours. I know some days it doesn't ever seem like you will have your beautiful babies, but I do believe that one way or another you will be mothers. For some it will take months and other years and maybe many of years, but don't give up because you have come to far.
You are not forgotten.