Baby Christian

Baby Christian
Christian was born with two very rare congenital heart defects; Hypoplastic Left Heart Syndrome (HLHS) and Endocardial Fibroelastosis (EFE) He will require three (two down, one to go!) open-heart surgeries to sustain life. He is a miracle and a blessing. We are so greatful to have him here with us. Thank you for stopping in. Lilypie 2nd Birthday Ticker

Sunday, August 26, 2007

Fundraiser results...

Yesterdays fundraising event was very successful! A huge thank you to all who donated, bought raffle tickets, or just wished us good luck! With the procedes from the Brightspot Juice and Java, the tip jar, and all the donations, we made $2,086.21. Can you believe it? We did not expect so much! We were so happy to know that some of Nicole's outstanding medical bills can now be paid. How wonderful.

The winners of the raffle prizes are as follows:
Block Donation (Gift cert from Brightspot, the car wash, and Sno-Cap): Cassie Watson
Mona Vie gift bag: Deri
40 lbs. National Dog Food: Dave Berray
Candle from The Culver House: Helen Young
Hand made quilt: Allen and Katheryn Godsiff
Handmade beaded necklace: MaryAnn Abbajay
Mona Vie gift bag: Tammy (at Suttle Lake Resort)
Hen's Tooth gift set: Jamie Sampson
Meal time gift set from Wisteria Chic: Dr's Kevin and Eden Miller
1 lb. of coffee from Sisters Coffee Company: Jason Spencer
1 lb. of coffee from Sisters Coffee Company: Carisa Gregg
40 lbs. of dog food from National Dog Food: Cary Kiefer (who owns a chiawawa)
$25.98 gift cert. from Your $12.99 Store: Daryl Tewalt (who gave it back for Nicole to use)
$25.98 gift cert. from Your $12.99 Store: Terry at Sno-Cap
$25.98 gift cert. from Your $12.99 Store: Andrew Gorayeb (Welcome to Sisters, Andrew!)
Handmade memory box: Sharon Watson
$100.00 Cookie Lee Jewelry gift cert.: Toni Turner

A HUGE thank you to all who purchased tickets for our prizes and another huge thank you to all the businesses and individuals who donated items for us to raffle off! We could not have done this without you.

And to Deri, who owns the BrightSpot Juice and Java, thank you so much for inviting us to hold the fundraiser at your business (30 N. Pine St., Sisters). Without your advice, help, and willingness we would not have had the success we did. Your heart is so huge and you are a great friend. Thank you.

Hugs to you all,
Grandma Whee
(Denise Wheeler)

Friday, August 24, 2007

Tomorrow is a big day!

Well here we are almost 11:00 at night. Tomorrow is the big fundraiser at Brightspot Juice and Java. Nicole decided we should have some of those awareness ribbons for people to wear. So while we were in Salem today visiting the state fair, we dropped into Craft Warehouse and bought some light blue organza ribbon and 800 little pins for them. We got home and made the signs for people to hold by the highway pointing the way to the fundraiser. The fumes from the pens were very strong! But we got the signs done and also a huge card for people to sign that will go to Doernbechers when Christian is born.



While at the fair Nicole got a Henna drawing on her cute tummy. Henna and flowers are supposed to bring good luck for pregnancies, so we went for it!



Cute, huh????

So now we will see how tomorrow goes and will update the blog as things transpire. We will also list the winners of the raffle here along with the prize won.

Come and see us tomorrow!

Grandma Whee

Tuesday, August 21, 2007

August 21, 2007


Isn't this a much cuter picture?! I know these 4-D pictures always make the poor babies look like they have some strange deformities of the head and a skin condition. But be assured that it is just the picture and not really the baby!
We have been keeping busy getting ready for the fund raiser on Saturday. I made an informational brochure and copied it off 200 times. Now we are in process of tri-folding them. My thumb is getting a bit paper burned! I also made some signs that are being put up in shops around town to advertise it. Deri (the owner of the Brightspot who is doing the fund raiser for us) has had some items donated for us to raffle off. Then a friend of mine at Bank of the Cascades donated a handmade quilt (thanks Angie!). I am donating a $100.00 gift certificate for Cookie Lee Jewelry. I am going to hit up some of the local business owners and see if they can help out. It should be successful and help out the fund that has been established at Bank of the Cascades here in Sisters. Let me know if you would like to make a donation and I can give the address of the bank.
Nicole has an appointment at 11:00 tomorrow for another ultrasound. We have an interview with a local radio station (99.7 The Mountain) on Thursday morning. The fund raiser on Saturday. Next week we go to Doernbecher Hospital to meet with the cardiologist and the surgical team and get the date that they will be inducing labor. So things are moving right along and we are now anxious to see what the future holds for this precious baby.
Thanks for checking in. I will post again after the fund raiser and let you all know how it went. Drop us a note to let us know you were here!
Grandma Whee
P.S. I am having a problem with this blog tonight smushing all of the paragraphs together into on big long one. Sorry about that!

Sunday, August 12, 2007

Back from San Francisco...

I know, I know... you are wondering why it was not posted that we were going to San Francisco. Well, there is a good reason. It was decided on Wednesday afternoon that we would go to San Fran Thursday morning. So, between packing, planning, and general pandemonium I did not have a chance to update the blog. Then when we were there I did not have wireless internet anywhere! I was very frustrated!

So, this is what went down. Wednesday we heard that the state was not going to pay for the procedure. We were LIVID! So, we decided that after reviewing the information we had that the in-utero surgery was a must have and we would all chip in what we could to get it done. So we flew to SF on Thursday morning and we were scheduled for a full day on Friday filled with testing and meetings.

Friday we all gussied up and headed to the hospital. Nicole had an Ultrasound that was very in-depth and took over an hour. Then the doctor came in and did another scan and was impressed by the baby's brain (I assured him that the baby got that from me!). We then went to the fetal treatment center and was then sent to the echo lab where they did a fetal EKG. There has been just a bit of decline in the heart's health over the past 2 weeks. We met with the perinatologist (before the echo) and she informed us that UCSF has done the suggested procedure only 3 times and with each case the baby died during the procedure! We were floored as this was NOT the information we had been given before! After the echo the entire team of surgeons, ped. cardiologist, and other staff was gathered and we had a meeting to determine our best course of action. Needless to say, the kids made the decision to forgo the in-utero procedure since the track record is not too hot!

So, now we are going to wait for the baby to be born and then he will begin undergoing a 3-step surgical plan that will leave him with just one ventricle and then will be a candidate for a transplant later in life. How much later? We just do not know.

That's our update for now. I know it is a lot of new information and the kids are doing such a fantastic job of handling this situation.

Thanks for dropping by. I will post information as it comes in regarding doctors appointments and such.

OHHHHHHHH... Bright Spot Juice and Java is hosting a fund raiser for baby Christian on August 25th. They are donating 1/2 of all proceeds of the day. We also get to make a brochure and set up a table with donation jars. The radio station I listen may be doing a remote broadcast from there also! Can you believe it????? What a wonderful woman Deri is for doing this for the baby!

That's all for now!

Grandma Wheeler

Sunday, August 5, 2007

Sunday the 5th

Well, we are still here... hmmmmmm

Friday I spent the day with Nicole while paper work was being done in Salem and Portland. Someone really has some issues as there was one signature missing on a form and that has delayed any scheduling until Monday at the earliest. ARRGGGHHHHHH! I know I am totally frustrated, I can only imagine how Nicole and Bryan feel right now. Thankfully Bryan's mom, Sharon, is so good with the people regarding insurance and she has been such a huge help to them. She is a wonderful woman and we are very lucky to have her help.

I will post as we know more...

Grandma Denise

Thursday, August 2, 2007

Thursday

Well today was a bunch of run-around and have nothing to show for it. I got up with the mother of all migraines, nausea, stomach pain, the works. But I still made it down to Bend to help Nicole with the final paperwork for insurance by 8 am. Noon saw us doing errands to prepare to be gone for a while. Then I was on the phone for hours with different people trying to arrange the household things for while we are away.

It looks like (and this is just looking like, not set in stone) we will be leaving for San Francisco Sunday. UCSF needed some additional items that they failed to mention before. Those will be taken care of tomorrow. Then we need to get our flights and transportation. All of that should be easy as Dave's Uncle Butch lives in the San Francisco area. We may be staying with him and utilizing him as a driver.

So tomorrow we should know more and I will post then. Take care and thanks for all of you leaving comments for the kids. It is wonderful.

Grandma