We've begun seeing the Respitory Therapist every 4 hours and they are doing an updraft treatment to help with her labored breathing. What has honestly shown to be the most helpful thing is this suction device (it looks like what they use at the dentist to suck out saliva). We can use it in her nose and mouth (its like a bulb syringe on steroids!) We've gotten a TON of mucous out with that and it helps so much with her feeds and her coughing when we do this!
This morning we spoke to the doctors and they will continue to round on her each day but will wait until Monday morning to re-evaluate her to possibly schedule a surgery date. We are praying for remarkable improvement so that we can proceed with the hard stuff, the heart surgery. I've been talking to many people and learning so much about heart defects/problems/etc that I had begun feeling much better about this heart problem, the surgerical solution and was/am hopeful about the prognosis. Today I spoke to someone who was kind and encouraging, though, he did tell me some more information that we'd not heard before. He said that it really was such a blessing that she had gotten this RSV illness because honestly, we think its what pushed her over the edge and allowed the heart problem to be discovered sooner rather then later. Because the PDA (the duct that is being kept open by the PEG meds) helps to get oxygen to the body, if this condition had continued to go unnoticed, she would have turned blue or just stopped breathing all together. Thankfully we have been in a medical environment under close watch and care and I wasn't home with her and the three boys when I found out, that would have been shocking. I told him how encouraged we were to find out that of all heart surgeries this is one of the most straight forward procedures to do and that this condition (coarc) is one of the most "fixable" kinds. He responded with what we already know to be true and fully believe is right, "that God is ultimately in control, and that we are just stewards of these kids God has given us..." He said that if she had have gone much longer she would have been a candidate for a complete heart transplant...that was sobering, that brought back the reality, the gravity of the situation for sure. Praise the LORD this was caught when it was and that no more damage has been done to her heart or body!
It's crazy to think that three days ago we thought we were just dealing with a bad respitory infection (which, in fact we were) but it's so much more then that...so much more serious. Life is fragile, it is precious and I've thought about that fact each time I pick her up or change her diaper, wash her body or feed her. It's a priviledge. God's given Ava Jane specifically to Adam and I. As Mrs. P pointed out today during her visit, Ava Jane IS the little girl that we so fervently prayed to God for, she IS the baby that God gave to us and we are so grateful...what a priviledge to have been given this precious little bundle of joy to love on and enjoy!
She was able to get a sponge bath and have her hair washed this evening, that always feels good to get clean and have some good smelling lotion put on you. Right now she's resting comfortably. Isn't she a doll?
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