March 29, 2009

Hi Everyone,

Here is my weekly update and it's been a really crazy week.

So I thought Amber would be going to LA on Monday instead they came to pick her up at midnight on Sunday. (But it wasn't that simple of a Sunday). They said 4pm then it was 7pm then well you know midnight. Since we don't have any control on how they transport kids from one hospital to another, Amber got a ride there via helicopter. I've now figured that the quicker they can get her the quicker they can start to bill the insurance :-)

On Monday Kurt was already there and I showed up later. Eye Dr evaluated and set surgery for Tuesday afternoon. Tuesday's surgery went well, I went home that night to be with girls in the morning. Wednesday morning Taylor has pink eye, take to doctors then head out for LA to see Amber. Kurt staying in LA all week going to work from there. I went back home Wednesday night and stayed home. Dr.s say Amber is doing well should go back to CHOC in Orange Thursday or Friday.

Thursday, Amber's numbers (stats/gases) not so well have to keep her until stable for 24 hrs. Friday, she is better but had to shave part of her head to find vein for new IV still trying to get her back to her feeds before going back to CHOC. They said she would be going on Saturday to call in the morning to find out what time. Called in the morning they didn't know what time, 30 mins later they call saying she was leaving in 15 minutes but her breastmilk had to be picked up by us it would not be transported with her. I have no idea how milk got there in a helicopter but not back in an ambulance. We called CHOC to request they take it, LA said no, it's their policy. Kurt had to go check out of the Ronald McDonald house anyways so he went to LA. I rushed to CHOC with the girls to bring milk to Amber before her next feeding.

Today, Sunday - Amber is doing well she weighs 6 lbs 7 oz (her birth weight with all the fluids), she is drinking 50 cc = 1 1/2 oz about. She has been needing assistance with oxygen since the gastro/fundo surgery a few weeks ago. They are trying to take her out of it but it might be something she will come home with... I still don't know when that will be. Kyana is still the big sister loving on both, combing Taylor's hair in the morning with pony tail and all, reading stories to Amber every time we visit. She is such a loving, sweet girl.

I thank you for all your prayers, good thoughts, texts, emails, and phone calls. I am so blessed to have you in my life. I was so afraid to move to Rancho Santa Margarita it was really easy to make friends with moms in Aliso Viejo once I stopped working. They are wonderful women and I couldn't imagine meeting a group of women more wonderful. Then I met another equally wonderful group of moms while Kyana was in Kindergarten (also know as the Kindergarten moms because of it). Not only have they helped paint, move and arrange my girls rooms, they've organized something wonderful that has given me peace of mind. Thank you Kelly for being the ring leader... She asked how can we help your mom provides the meal for you, the girls are taken care of on any given day, we want to help how can we help. I said I am ok the only thing I need is to clean my house before Amber comes home, it's been a few months. I just hope they give me enough notice so I can clean it really good. I can't ask you to clean my house so don't worry that's all I need for right now. Two days later I had a crew of three people cleaning my entire house... ENTIRE HOUSE. Thank you to all who contributed or were involved in one way or another. I will get a list from Kelly soon and thank you personally. You are all awesome people, your love gives me strength. You all make me smile when I am sad. I thank you for jumping into my roller coaster and holding my hand. Kurt and I are taking things one day at a time and truly thank you.

Love you,
Jessie

PS Thank you Angela for the Musical Jumper, Charlie for leading me her husband Jim to find the smoke alarm that needed battery change to stop beeping, my neighbor Liz for the Oatmeal/chocolate chip dessert (I was running out of oatmeal cookies my mother in law had made for me to help with milk production and then the doorbell rang). Thank you Pastor Leland for your calls and prayers, for keeping everyone informed and praying for us. Thank you, thank you, thank you to all. Have a good night and wish me an easier week (hey one can only hope)