Gearing up for possible transfer
"Never tell me the odds!" Han Solo, Star Wars
Seem like a funny quote? Not really. Just last night I was telling Shane how exhausting it was to hear all the terrible odds and statistics that the doctors hand out when it comes to Jonah. You know words like cerebral palsy, autism, permanently disabled. Sometimes you wish that those doctors didn't have to be SO clinical! Couldn't they at least tell you to pray for the best? I guess that is just how life is anymore, everyone wants to be careful and not refer to any type of God and the possibility of miracles but it still seems so sad to me. So after this conversation Shane said, "Oh yes, it's just like Han Solo telling C-3PO to stop declaring their likely death every time they faced a challenge in Star Wars." I got a good laugh out of that. In fact, I'm at the point where I won't google, research or do anything yet because I don't want percentages, statistics, case studies, ANYTHING to wrap itself around my brain and take away any type of hope that I am still clinging to. Thanks, this time I want to totally trust in God instead of researching the internet for information and that is a miracle as everyone knows I am a chronic planner, etc. Even going through invitro, I wanted to know all the ins and outs of the procedures, the statistics and likelihood of getting pregnant, etc. Not this time, I have to leave it in God's hands. Like my dad said, He is the ultimate physician anyways.
Today was frustrating! Although I seem to be getting better with terrible news (I am not sure if that is a good or bad thing).
It is a matter of days before they decide where to transfer Jonah for his shunt surgery. The doctor today recommended UCLA because when they life flight they send a doctor and full team and she said she would be more comfortable with those arrangements. She also mentioned it could be as early as this weekend. I personally asked for Fresno as they have the Ronald McDonald house and accommodations for us staying for several weeks would be much easier. One nurse I spoke with this week didn't believe that UCLA made arrangements for parents, they only offer discounted hotel stays. But I talked to another nurse today and she seemed to think that UCLA offered some type of arrangements for parents with loved ones undergoing extensive care, etc. I guess we'll find out here soon. I wish we had a better idea of how long Jonah will be treated, the doctor's can only give estimates and even then it all depends on how he does in surgery, his post-op recovery, etc. They also said most likely he will also undergo the PDA surgery for the extra heart valve (so they won't need to worry about another transfer). That is good to know, I can't imagine going through transfers several times...it is a huge stress on our family, especially leaving Noah behind.
Shane is planning to stay the first week with me if Jonah is transferred this weekend or next week. I want him there for the surgery as I do much better when he is with me. He seems to hold it together and ask all the right questions (it's that linear thinking that comes with being an engineer!) I am getting stronger at putting off emotions, at least until I am home and away from the hospital. I still get a bit choked, like today when the doctor was saying that sometimes after these surgeries if babies aren't doing well parents will ask that no heroic measures be taken for the child, I remember getting choked up and looking at her and said: "The only thing that would cause us to say that would be if he was completely brain dead and would be comatose the rest of his life. If he has cerebral palsy we will still love him." It still appalls me that doctors even ask this question, why would I ever just give up on loving my child even if he was permanently disabled? Who really has the heart to do such a thing? In my darkest moments I remind myself that technology has come a long way, that even people with severe Cerebral Palsy can still lead fairly decent quality lives. Who am I to say, "Just because you medically see my child as disabled I should give up on him?" No way, I would never live with myself. Jonah has too many people, aside from his Mom, who love him without measure. No matter what, he will lead a life full of a lot of love and that IS a life worth living! No matter the circumstances that come with it.
We are going to talk to my mother-in-law tonight and ask her to come stay in our home here in Bakersfield. She is a great advocate and will give good care to our little Noah in our absence. She worked hard for 2 of her 3 boys when they were infants and sick with different ailments, in fact Shane had a nasty stomach tumor and she kept pushing the nurses and doctors until someone got the right type of test done and discovered that he needed surgery, etc. So she knows what it takes to advocate for sick ones!
I think after the first week my father will travel down to stay with me in LA, I sure wish this would only be a two week experience but it could easily turn into a month. Thank goodness I have had friends and my close cousin offer to come stay with me for support. Shane starts up work again November 1st. I sure will miss him, he has been an incredible support through this entire experience. When I was bed ridden he did everything for me and then some, when babies came early he stood by me and refused to be anything less than strong for me. I would not have made it through without his companionship.
I did want to say one thing, I really do have some good days and bad. Yes, when I write in this, my quasi-online journal, I want to be as positive as possible. After all that keeps things in focus for me and helps me when I read back at things that I may have said. But I do have my bad days, my angry days, my days when I want to say, "Hey God! I had a hard time getting pregnant, wasn't I supposed to at LEAST have healthy children out of this equation?" I am only human and my days vary in emotion. It always comes back to my faith though, thank goodness I have the gospel of Jesus Christ. I wouldn't make it through this without the knowledge that this life has a purpose and God loves all his children, no matter their situation.
We will keep you posted with updates as they come along. I am so glad to hear from so many of you saying your are keeping up with things by visiting the blog. I hope I am lucky to continue writing wherever we are transferred. I know I could ask Shane but he'll be so busy starting a new job at Grimmway Farms that he won't have the time to do much.
Thanks for your love and prayers, as always keep praying.
Love, Shane and Michelle