Four Little Ladybugs

Ava Elisabeth was born 6 weeks ago, 5 weeks early. She did not pass her hearing screen at birth. We took her to AI DuPont for follow up testing. It was there that we discovered that Ava has severe to profound hearing loss. Our Son Eric was once diagnosed as such as well. It wasn't just hearing loss. It was an undiagnosable mitochondrial disorder which took his life when he was 4 months old.

We are now trying to figure out if Ava has the same genetic problem that her brother had. The problem is that we don't have a clear cut diagnosis for him. WE have his DNA in some of the best labs across the country. We need insurance authorization to test his DNA so we can possibly be firm in Ava's findings and spare her from some harmful tests and lots of blood draws.
We are praying that Ava will remain with us and just have her ears be harmed. This will be a long emotional road but we are relying on God to walk us through. He did with Eric, He will now too.

Update 10/01
Yesterday Ava had the remaining blood work drawn. It was a lot of blood and she seemed to fair well. Today she had an appointment with the Neurologist. It usually takes a month or so to get in with him, but he remembered Eric and they saw us two days after my phone call. After a comprehensive evaluation we were told that Ava passed her exam, but he is concerned about her head control. He stated that if I brought her in his office and he didn't know about her brother then he would think that she was appropriate for being 5 weeks early. Which still may be the case. However, because of family history, he wants to watch her and will see her next month to know for sure.
Currently this news is bothering me, even though I know that is mostly OK. It's needling at me.
We are seeing all these specialists at the request of the geneticist so we can get a base line of Ava's functioning so we can get a picture of her current health. I fear that all these exams are too much for her. The Neurologist is hatching a plan if Ava becomes acutely ill and how to proceed from there. At this time it is imperative that she eat regularly, not fast for any test or exam and to keep illness away from her. If she should become ill then we would have to take her to the hospital for IVs. This is in effort to not throw a wrench in her metabolic system as a wrench is likely not something she would be able to recover from. (Should she in fact have a mitochondrial disease). We are now thinking that is what started Eric on his downward spiral.

This is a lot to digest. We find ourselves on a path of discovery. In the process of trying to help our sweet baby girl we are finding more and more out about what happened to Eric. None of which we were ready for. This is indescribably difficult, but we are trying our best to dig deep, have hope and rely on God. He was the only way we got through Eric's illness and subsequent death.

When I feel deep despair I find God gently nudging me to remind me of His presence, plan and His love for us. I could be a phone call from a friend, a letter, Facebook message, one of our daughters' hugs, giving us a snugly toy. It could be how the day all of a sudden changed from despair to hope. Ava could wake up and smile.

Emily and Alexa will be five in a month. I was trying to talk with them about their party as we may have to share it with Ava's dedication. They were all excited about the prospect and Emily even said, "I would love that." I was all stressed out about not being able to dedicate her on a more convenient day for our family and here is my daughter showing me compassion and flexibility. God is in all the details.

Tomorrow Ava sees a cardiologist for a baseline evaluation on how well her heart is functioning.
I pray for strength, endurance, and of course good news.

Today I ask for prayers that we have hope and peace and that Ava get stronger. Good news is that she gained a good bit of weight since last Friday, so that is encouraging too.