Via Con Dios, 2010

This has been some year.

Blissful highs and devastating lows.

Our year in review:

January
CakeCake Sundays with Daddy

February
Silliness in the SNOW!

March
Baby Golden II is ALL BOY

April
Spring Shenanigans

May
Terrible Two's even before she's 2!

June
Happy 2nd Birthday!

July
Welcome to the world, my Studly Muffin

August
Much Needed TLC From Big Sister

September
Baking Therapy

October
Bruja!

November
So Thankful For Peaceful Sleep

December
Most Precious Gifts of All

Praying for a HEALTHY, happy 2011 for our family and yours.
Happy New Year.

Hello Again, Houston

We are back in Houston today for another checkup with Wes' transplant team.
We got in yesterday and had labs drawn...first two sticks in over a month.




W was not too thrilled to be without his broviac in that regard.

We met with Dr. Fishman, Julie our transplant nurse, and Stacey our dietician. Can you believe they used the term "scrawny" to describe Weston?! They are pleased with his weight gain and he is still growing well: 26" (50th percentile) and 16.94lbs (a lot attributed to liver)
So the meat and potatoes of our appointment:
•Wes was approved by UNOS for more points, he is now at 24 PELD points (up from 10)
•Bili and INR (clotting time) are up and albumin is down - all expected signs that his liver is failing. Thankfully, nothing is bad enough for hospitalization right now.
•All of his feedings must be supplemented, so no more direct breastfeeding, although I can still pump
•We avoided the dreaded NG tube today-yea!!!
•As I type, we are waiting for an ultrasound of his abdomen to check for any fluid (ascites; also associated with liver failure)

All in all, a good appointment. Hopefully, with the increased points we will get our call soon.

Posted using BlogPress from my iPhone

Location:S Braeswood Blvd,Houston,United States

Merry Christmas From The Goldens

We just missed Santa! Weston's on the left, Emily's on the right.

 

Checking out her loot.

And so it begins!

Sweet Wes in his new ride.

Santa brought E an iXL loaded with her favorite pics and Yo Gabba Gabba songs. Check out that crazy bedhead!

Astonished that the puppy knew his name!

The aftermath of Hurricane Christmas 2010

After the dust settled, the kiddos decided to check out each others toys...

Yes, she climbed in there herself. Yes, she fit. Yes, she knows she too old for that toy. Yes, she is a cute mess.

Wes loves Emmy's Dancing Mickey!

Mommy and Daddy's favorite gifts.

 

Another Week Down

What a week...

Emily turned 2.5 years old on Saturday; Weston was 5 months on Sunday. 

Billy and Emily have been off on Christmas break since Monday.

Daddy played golf Tuesday and Mommy had a girls' night.

Today, we ventured to see Santa twice...we waited and waited, but never saw him.

No news from Houston. We have an appointment with the Liver Center on the 29th.

I still jump every time the phone rings. 

I don't think my little man is feeling well these days. While he still smiles, its not like before...

The last few nights, he has had horrible screaming and crying fits. Nothing will console him and he sounds like he is in pain. It is so hard to watch...and even harder to understand.

Hopefully, he will get his new liver soon.

Emily is keeping us on our toes and entertained, as always.

Just a little sampling of her shenanigans...

I love to make Wes laugh!

Sneaking around with a stolen binky...

A funny face or two...

NAKEY BOOTY BOOK TIME!

Daddy says I must be going to the movie, 'cause I'm picking my seat.

**pffffffffttttt** Ahhh, that feels better.

Can you believe she just did that?!

On THE List

We received some great news this afternoon...Weston has officially been added to the liver transplant list.

Since he is still relatively "healthy", he does not have many PELD (Pediatric End-Stage Liver Disease) points.

Right now, he is listed with 10 points, but our liver team is petitioning UNOS to increase his score to 24. 

Every time the phone rings, I jump. This is going to be some process...

We are very grateful to Julie, our transplant nurse. She busted her butt to get him listed so quickly. I think it was their goal to have him ready before Christmas...

It is a very unsettling feeling to pray and hope for a liver. The liver has to come from a donor.

It just doesn't feel right.

But, we continue to pray for Weston.

Untethered

Weston had his broviac removed this morning.

In a few days he will be able to enjoy his first real splish-splashy bath since the first part of October.

I am glad it is out, because it can be a major source of infection and I know it bothered him. But, I am also wary of any testing to come, because our line to draw labs is now gone...

It's been a pretty rough week.

My gut is telling me that Wes is teetering on the edge of a downward spiral.

As mentioned previously, his liver is now hard and spleen enlarged. We also learned that his bilirubin has gone from 6 to 10 and he is looking more yellow to me. Also, his stool has suddenly lost its color.

He is scheduled for his echocardiogram (ultrasound of his heart) next Thursday. This is the last test needed to present him to the medical team and have him added to the transplant list.

Our Houston liver doc called me yesterday to check in, and said that they may pre-post him with the pending echo results. Hopefully, Wes will be listed before Christmas. 

I can't lie, I'm pretty sad right now. 

I know I need to focus on the present and enjoy him being at home and his first Christmas and keep my spirits up for Emily and make sure that she enjoys the holidays and it is just as special and happy as always...

Sometimes it is hard not worry about what is to come.

Oatmeal...A Photo Essay

Oatmeal? OK! I'll try it!

Huh. Not what I was expecting.

Yeah, this is seriously gross.

No more, Mom!

I tried it...I don't like it. *baaaaaaarf*

Yet you keep shoveling it in...

Help!

Wordless Wednesday: Sweet Love

Weston Update

We saw Dr. Z (Austin GI doc) this morning.

I expressed a little concern that MAYBE the transplant team was being a little too aggressive in wanting to get him listed and all that associated jazz.

My biggest immediate concern was the possible start of TPN (total parenteral nutrition, aka IV nutrition) if he had not gained sufficient weight.

TPN is a huge pain with MANY complications and serious considerations.

Weston was 15lbs 1oz (OMG!) and 24.75" today!

Dr. Z felt that TPN was not needed.

After he assessed Weston, he said that his liver was now hard and his spleen was enlarging. And therefore agreed that we should continue pursuing transplant at this point in time. He again reiterated that it is better to transplant him when he has been able to compensate and grow normally, as opposed to going into liver failure and then dealing with all those complications added on top of the transplant, itself.

It was very disappointing and upsetting to get the news that his liver is hard now...meaning there is significant scarring and damage.

I guess I keep denying that he really does need a liver transplant...

Once out of the office, I promptly called the transplant nurse, Julie, and reported the highlights of the appointment. AND they are thrilled with his weight gain and he will not need TPN! Which means, he can get his broviac taken out!! YEA!! Wes longs to splash and play in the bathtub, but has been restricted by not getting the broviac wet. Maybe before Christmas?!

National Biliary Atresia Awareness Day

Today is NBAAD! 

Weston was one of 300 babies diagnosed every year with this horrible liver disease. 

Hopefully with education and research, we can put a stop to BA and all other pediatric liver diseases.

Click the following links for more information about the disease and the stories of Weston and other children with BA:

Cincinnati Children's Hospital

baaware.org