Wednesday, April 29, 2009

So I am so computer smart... NOT!!!!

I didn't even realize that my links to my store and Etsy site were not working... but NOW they are!! So check it out... see all of my wonderful goodies :-) And next time.... if it doesn't' work for you TELL ME!!!

Thursday, April 16, 2009

So... back the the phone call!Dr Cedars told about a NEW, EXPERIMENTAL fetal surgery that was just starting to be done here in the United States. He gave me three areas to focus on, and one phone number to call. I was at work and I work where the only computers are the ones that run our sewing machines so I was unable to search anything, I just made the calls cold. In retrospect this was probably the good Lord hard at work because if I had read the things I read that night before I made the calls, I probably would never have made the calls...#1, Tennessee...I called the hospital there had been doing the surgery for about 6 months. They had done somewhere around 25-45 surgeries, with varying degrees of success. They did the surgery late in the pregnancy so if anything went south the baby would still have a viable life. This sounded good in some ways, but through further research it was actually bad. See there were so many complications with the surgery that a BUNCH of these babies ended up being born very premature with lots of preemie issues, and the surgery was so recent that it didn't have a chance to work very well. But the BIG downfall to this hospital is that it was a for profit hospital and they wanted a HUGE sum of money UP FRONT, and would not even bill insurance little lone work with them. I can't remember the amount, but I do remember saying to the Lord "HOW IN THE WORLD???" They recommended I call #2#2, Children's Hospital in Philadelphia, aka CHOPs. The secretary here was VERY helpful... in some ways. She had good information about the surgery, which I hadn't really got from #1. She had the compare and contrast on doing the procedure early in the pregnancy vs latter. She told me that CHOPs DID work with insurance companies and was a non for profit teaching hospital so there were options on the money end. And she had some very promising statistics from CHOPs doing the procedure. She was calming to talk to and sweet as can be. BUT she had some REALLY bad news too.... her fetal surgery team was out of the country and would not be back before I reached the cut off in my pregnancy for them to do the procedure. See, I was already 19 weeks.... and there was no time to get there, have all the pre surgery work done and have the procedure before the 22 week mark that they stopped during that time. Especially with her team out of the country. Talk about a roller coaster... just when I was getting excited that there might be a way, she told me there was no way! I thanked this sweet heart of a secretary and just before hanging up I mentioned, "I have heard of #1 and you guys, but also of a rumor of someplace else, know where else by any chance?" Her answer shocked me beyond words! She said, "There is another hospital, but I don't know which one, I just know that they are in California."

CALIFORNIA????? Are you kidding me?? I have been on the phone for the last hour with all of these East Coast hospitals when there was one RIGHT HERE IN MY STATE??? I HAD to find out who it was.... NOW! So back I went to wonderful Dr Cedars, but he didn't know. His guess was Loma Linda in southern California. So I called them, no dice. But they thought it was a hospital in the Bay Area, their guess being Stanford. So I called Stanford. By this time I was really good. Call information for the hospital's main number. Call the operator and ask for the fetal surgery department. Get whoever answers the Fetal number and TALK REALLY FAST! :) The key was not letting them say "I will give that info the the proper person and they will call you back." The key was also keeping whoever talking as long as possible to pull as much information as possible from them. After my third call in 10 minutes to the Stanford Fetal Surgery department someone else answered. She said, "oh no that's not us, it's UCSF, here let me get you the number." Thank you Lord for that angel!!!!

So late on Friday afternoon, on tax day no less, I reached Jodi, a nurse coordinator in the Fetal Surgery Department at University of California at San Francisco. Jodi was sweet as can be and terribly helpful too. Yes, they had done a few of the type of surgery that I was asking about. Yes, they had had varying degrees of success. Yes, I could come check it all out. But as we started talking I felt her pulling back. I finally asked her why she was hesitating and she had news that stopped my heart. It seems that as a team they had decided that they would only do the procedure to the 20th week of gestation in a pregnancy... and I was already in my 19th week! I took a BIG gulp, said a quick prayer, and asked her if I could tour the department in the morning! Come hell or high water I WAS NOT letting the Lord bring me this far to scare me off now! She laughed at me, and said beings as tomorrow was Saturday, that maybe we should wait until Monday for the tour :) That afternoon Jodi set up a TON of appointments for me all day Monday, and gave me a list of directions and things to bring. You see, if I decided to do the procedure I most likely wouldn't have time to come back home before hand....

I left work then with HOPE and lots of things to do, not the least of which was break the news of what I had spent the morning setting up to my husband.... Yup, I totally had forgot to call him in all of this! Monday April 17th 2000 would become a day that my husband nor I would ever forget.... I had A LOT of those days in April 2000!

Wednesday, April 15, 2009

9 years ago yesterday.....

I recieved a phone call that would FOREVER change the course of my life...

And that of my unborn son....

Wanna hear about it?

9 Years ago I was 19 weeks pregnant with my second child. My first pregnancy had gone TERRIBLY wrong, and my daughter Taylor died at birth after a full term pregnancy. So you can surely imagine the devastation I felt when at 18 weeks along into this pregnancy I found out that I was carrying a child with a sever birth defect. I felt like the world had been pulled out from under me, and that my Lord had forsaken me. I will tell you now, the world went on, and the Lord was with me every step of the way. But it was never easy! And the agony that I went through during this coming week 9 years ago still haunts me today!

I was BLESSED beyond words to have an AMAZING Doctor, Dr Cedars in San Luis Obispo. This poor man has had a very tough job in my life! He was the Doctor that had the incredibly hard job of telling me that Taylor had died, then just a short time latter he was the one to diagnose my Nathaniel's birth defect. I can't tell you how my heart stopped when he looked at me and said "Gretchen, I have some news for you." I KNEW it was not good news.... and it wasn't. My unborn child had a sever birth defect commonly called Spina Bifida. I personally knew very little about Spina Bifida, but I can assure you I QUICKLY learned A LOT about it in the next few days.

In the first weeks of April 2000 I went under MANY tests, and talked to many local Doctors. All of whom were laying out a life of doom for myself and my child. Many were pushing termination at me, but I could NOT terminate my pregnancy, not after what I had gone through with Taylor. Dr Cedars seemed to be the only one that understood where I was coming from and my conviction that the Lord had given me THIS child for a specific purpose and reason. And Dr Cedars was the one who made THE CALL, the one that changed the course of everything!

Dr Cedars had attended a convention and an acquaintance of his had told him about a BRAND NEW surgery that was just starting to be tested on unborn babies with the exact birth defect that my child had! He knew next to nothing about it, but had the name of three hospitals for me to call that might know more about it.....

Be sure to check back to hear what I learned in the next few hours...

Saturday, April 11, 2009

Children's Day in the Plaza 2009

Today was Children's Day in the Plaza here on the Central Coast. We had lots to do there and lots of fun, so I thought we would share some with you!
Butterfly Boutique had a booth showing off our wonderful goodie, and making free fun crafts with the kids that stopped by to see us. Josie and Brianna were a HUGE help with the craft. I think our foam door hanger were a big hit! (especially if you judge by how many we went through :) ) Butterfly did well on selling things too, and made contact with LOTS of prespective new friends
Brianna working the craft table with some participants

Audrey TOTALLY LOVED all of the activities and fun people around!

Brianns, Audrey & Josie: modeling their new BB shirts, and all of Audrey's loot
(do you see how FULL that bag is?? And this was before noon!)

Audrey with her new friends Pooh & Tigger

Also, Central Coast Dance (which is the studio that both Josie and Audrey dance at) did a performance for all in attendance. So, of course, I have to share some fun videos clips and pics!!

Kierra & Audrey getting ready to do their dance, Jazz Hula Baby.
They we so freaking cute!!
Audrey is the one on the right

This is "Tell Me Somehting I Don't Know"
Josie is the tallest girl in the group, she is the one on the left at the begining of the clip. And this dance is her first attempt at choreographing for her group. It shows LOTS of her attitude!

Now I am not really sure why these two clips won't stop kissing, but it is what it is!

The one on the left is Jazz Hula Baby, and Audrey is the dancer and the left. So sweet.

And the clip on the left is Break The Floor, another of Josie's dances. She again is the tallest dancer, the one who starts on the left.

Hope you enjoyed the pics and clips as much as we enjoyed the day!

Sunday, April 5, 2009

So we had some fun today...
being as it was Sunday, and my only day of the week off we went exploring a little...
and we chose to let Audrey be in charge of the camera for most of the day!
Her composition was different....
This is the really cool old fashioned trailer we followed down the road this morning after church
This shot wasn't so clear, but she was taking the picture through the windshield from the
back seat of the car... pretty cool gig though hu?

Ok, so this was pretty impressive.... very artsy..
Her flowers at home...

Some of the wonderful flowers my kids picked me yesterday..
at a strange angle..

At a stranger angle still...

And finally. poor Scooter... still stuck in his box from the accident.
Poor baby is soooooo sick of his box!
And THAT was our Sunday through Audrey's eyes!

Saturday, April 4, 2009

I got to play at work some today ! :0)

I got to make up some inventory (sew some stuff in plain English) for the Children's Day at the Plaza next weekend!
So today I made 2 pillow and lovie sets out of minkey, 1 crib blanket (minkey & cotton), and 1 large minkey & satin lovie.
Not too much, but the first time in weeks that I have got to "play" at my machine, not be doing customer's alterations or making dance costumes... it all makes money, but this was fun!
Enjoy the pics...