Wordless Wednesday: Waiting Is The Hardest Part

I <3 Hipstamatic

So, I'm slow on the uptake. I have just discovered only the most awesome iPhone app ever!

I love that no matter how technologically advanced we get, 

we still crave that vintage charm.

Channeling Sylvia Plath. JK!!! Watching her cakecakes bake.

 

 

My big eyed boy

LOVE LOVE LOVE the subtle color...and that little belly rotunda!

Posted using BlogPress from my iPhone

Kitty Cupcakes

It's no secret of E's love for cupcakes.

And, in effort to jazz up our stay-at-home time, why not MAKE cakecakes?!

Up close and personal with the kitties

Enjoying the fruits of her labor

You thought you could escape, elbow icing! Muwahahaha

A poor, innocent by-stander to all this sugary debauchery

- Posted using BlogPress from my iPhone

Surgeon and GI Follow-Ups

We got some disappointing news this afternoon. Weston's liver functions and bilirubin levels have not changed much since discharge. It could just be that he needs a little more time before the numbers start responding. On the bright side, the surgeon felt that if the surgery wasn't working at all, his numbers would have increased significantly. Both doctors are still hopeful that the Kasai procedure will work for Weston. Another piece of good news, the biopsy showed that while his liver was fibrotic, it had not developed cirrhosis.

So, the plan is to have the labs redrawn in two weeks. If there is still no change and depending on the results of other tests, they may either increase the steroids or treat him for possible infection.

We still appreciate any prayers and positive thoughts. Weston HAS to get better!

- Posted using BlogPress from my iPhone

2 Month Pedi Check-Up

The stats:

Weight: 9lbs 11oz (~10th percentile)

Height: 23" (~50th percentile)

We updated Dr. C on Weston's Biliary Atresia diagnosis and surgery. He said he was not surprised to see that he dropped off a little on weight and height, but that his voracious appetite is more than like due to W trying to catch up for lost time.

He was very impressed with Weston's speedy recovery.

Shots are very important for our little guy, but we decided to get his blood work done and visit with both the surgeon and GI doc tomorrow before we start them.

Wish us luck tomorrow!

To Weston, At 2 Months

My sweet Weston,
      I can't believe you are two months old. In a way, time has flown. It seems that you have spent the majority of your short life in the hospital or at a doctor's office. You had been through more at 6 weeks old than I have in 27 years. But, I believe that you will be a stronger and better person because of your experiences. And I know that I will never take a smile, coo or milestone for granted.

I love you so much, Little Man!

Big Sister Extraordinaire

Seriously, E is the best big sister EVER.
She loves that little boy more than anything.
First thing in the morning, she looks for Baby Weston to give a good morning kiss to.
She looks for him as soon as she gets home from school.
Is always there to pop a binky and is very sympathetic to his needs.
She calls him "little man"!
AND I even saw her trying to teach him how to turn on the lights and sounds on his bouncy seat.
SO SWEET!
We love her soooooo much!


Weston Update:
Weston still seems to be doing well. Poopies are still colored for the most part.
He is hungry ALL the time. I am not producing enough milk, so we are having to supplement him with some formula pretty often.
He is also going through Mommy-itis. *sigh*
No one will do but the mommy. As sweet as it is, it is also very frustrating because he REFUSES to be put down or held by anyone other than me!

Next week is a big week.
Monday, Mr. Man has his two month check up with the pediatrician, maybe some shots :-( and then he has to get blood drawn to check his liver functions and biliruben levels.
Tuesday, we have afternoon appointments with the surgeon to discuss the results of the labs and his recovery; followed by an appointment with the GI doc.
We are praying that his labs continue to improve.
A lot of people ask me if he still looks jaundiced...it is so hard to tell.
Some days yes, some days no.
It is dependent on the lighting and what color he is wearing.
I THINK his color has improved and I am pretty sure his sclera have clear up a lot, but still have a little tinge of yellow to them.

 

The Sibling Ying Yang

Weston is only 7 weeks old. I am really not in a position to speculate about the dynamic two children have on a household, but I can't help but notice this uncanny relationship between the two.

During the last couple of months, we have become accustom with this:








The whiny, tantrum throwing 2 year old and the sweet, lovable bitty baby.

Over the last two days, they have collaborated and thrown us a curve ball:








Our sweet, spunky little E has returned with more than enough hugs and love to go around.

And the little stinkweed is raising holy hell, refusing to be held by anyone but The Mommy...and it's not because he likes me better, it's simply because I supply the food.

Which brings me to my theory...one must be the yin to the other's yang. In short, I will never have a sane day again. I've resigned myself to the fact that if I want my day to be in ANY way productive, it's going to have to start after his 4 o'clock feeding. The dishes in the sink- still there. The sheets in the dryer- barely made it on the bed before 10pm. The exercise DVDs I tried to start- still in the shrink wrap.

Serenity NOW!

On to some better news...
I am happy to report that Weston seems to be doing really well. He is taking his many medications well, and it would appear that there is evidence of bile drainage (yellow and green poops)! Yea! Let's hope he keeps it up!

Location:The deepest recesses of my happy place

Day 7: Fantastic News, HOME!

I am happy to report that this is being written from the comfort of our own home! We were sprung this evening!
The Nurse Practioner came by in the early afternoon with Weston's liver function and bilirubin results.
Not only had they improved since his surgery, his liver functions were either NORMAL or very near normal! The NP and I literally shared a victory dance and chills! Wow! We were not expecting that!
Dr. M visited later, and gave Weston a final once over and sent us on our way! We will follow up with him in two weeks. In the mean time, Weston is taking a lot of medications: a steroid, antibiotic, vitamin and something to help with bile secretion. His liver functions and bilirubin will have to be checked at the apt in two weeks to ensure that the procedure is still working. We are so hopeful that Weston will fall into that third of children that do well with the surgery and have no further issues.




Ready to go!!! No lines, no tubes!

We may sound like a broken record, but Billy and I cannot thank you all enough for the love, support and prayers you have sent our way. We knew we had a good support system going into this, but were completely blown away at the generosity and immense number of people who reached out to us. A lot of people have commented on how strong we have been. I have to be completely honest with you and tell you that there were some really dark moments and our faith was seriously tested. But, we fed off of all the love and positive energy sent our way and were able to be as strong as we could be, and face this head on. I know Weston has to have benefited from our positive attitudes, and it is all thanks to you.
We are so blessed to have you in our lives.
We are so blessed to have our little boy at home with us, doing so well, smiling and eating like a horse again. We don't know why Weston was "picked" to have this condition, but God is good and there is a plan for him.



Our little boy at home, in his own bed. <3
- Posted using BlogPress from my iPhone

Location:Casa de Golden

Day 6: Poop!

We got one of the best presents this morning!!

A poopy diaper! Yea!

One of the surgical Nurse Practitioners and surgeons came by this morning and took out W's drain (5 down, 1 to go) and surprised us all by saying he MAY GO HOME TOMORROW!!!!

AHHHHH!

We were so excited and in disbelief.

 He was weaned off of his TPN/Lipids this afternoon and completely untethered except for intermittent IV antibiotics. Which means he is super snugable now!

In addition to our great news, we had great visitors.

Amy, Brenna and Bettie Anne stopped by with the greatest hospital survival kits. Not only with goodies for us, but for Miss Emily, too. You guys are so sweet, we cannot thank you enough :-)

Speaking of Emily! Nana and GD brought her by to visit her little brother. She tried to swipe his froggie balloon, but her kisses and hugs made up for it. It was so great to see her. Billy and I miss her so much and can't wait for things to get back to normal...whining, refusing to go to bed and all!

The NP said that his metabolic panel looked really good this morning. They were still waiting on the biliruben and liver panel to come back. The surgeon said that they are really not expecting to see a huge improvement this time; it is serving more as a baseline for future testing.

Wes is needing less and less pain medicine everyday. Eating well. Pooping and peeing.

AND SMILING!

Someone is well on their way to recovery!
- Posted using BlogPress from my iPhone

Day 5: Great Day!

Last night was another rough one. Can't say that I blame him; I'd cry too if I was being starved! He did not need as much pain medicine last night, though. Mommy and Daddy cuddles are the best medicine anyhow.

We saw another of Dr. M's partners this morning...he's our hero! He let Weston eat!!! He was satisfied with the very active bowel sounds and the plethora of toots!

Feeding my baby for the first time since Wednesday @ 5:30 am!

And if that wasn't good enough...this just made my heart soar!

- Posted using BlogPress from my iPhone

Location:DCMC

Day 4: So Long NG Tube, You Really Suck

Last night was awful.

Weston was uncomfortable all night. We suspect that while he does hurt from the surgery and the swelling, most of last night was due to hunger.

So sad!

Every two hours he was crying and subsequently getting pain medicine.

This was concerning to Billy and I, because while we do want him to be comfortable, we think the pain is mostly due to hunger; and the pain medicines slow his bowels down. Again, we are walking this fine line with no easy answers.
And did I mention that he pulled his NG tube almost completely out THREE times last night?!

One of Dr. M's partners came by to check on him this morning. She really wants Weston to have a bowel movement before he starts eating. The Mommy Nurse protested that he had a bowel prep and was only on clear liquids from noon the day prior to surgery. There was no way he had anything in there to move! And shouldn't the very active bowel sounds and the passing gas be enough proof that his bowels are working?!

Alas...he must produce before he gets anything to eat.

I have been assured that he will be able.

Hmmm....

(he is receiving special IV nutrients and lipids to keep him from getting too low on calories)

On the bright side, since his NG tube was only getting a small amount of clear fluid from his tummy, they felt it was fine to take it out. Wes couldn't have agreed more.

Four lines down, TWO to go!

A NG free Weston contemplating his balloon froggie.

SO, our creative goals for the day (a la Daddy)...

Weston showing off his Longhorn Spirit.

So, for now we are just sitting and waiting for things to get going, so to speak.

We had some really sweet snuggle time this morning and with another line out, feel more comfortable getting him out of his bed more often.

As I type, he is laying on our blow up bed with his daddy, watching the Horns.

:-)

- Posted using BlogPress from my iPhone

Day 3: Busted outta PICU

What a good day we are having!! Weston is very awake and alert. The only down side to that is, he is more aware of his pain. :-( But, between the pain medicine and sugar water we can dip his binky in, we seem to be able to keep him fairly comfortable.

While he still is pretty puffy all over (common "complication" from surgery), his urine output is picking up and is more clear and less concentrated looking. SO, they were able to take his catheter out. Yea!! And they took out another peripheral IV. AND he is off of oxygen and we were able to ditch the heinous pulse ox and EKG monitoring! Double YEA!!!

Wanna see a pic of my less tethered studly muffin?





He still has his NG tube (in his nose) and the drain in his abdomen. These should be able to come out shortly after he starts eating. Which should be within the next day, because: Houston, we have some gas! NEVER have been so happy to hear toots in my life!

We are out of PICU, and currently on the surgical ward. I think we all had a sigh of relief when we got up here. So much so, mommy and daddy got to love on Wes!

Mommy kisses



And Daddy hugs!

Location:Dell Children's Medical Center

Day 2: Recovering in PICU

What a difference sleep makes. Billy and I were so weary last night, but awoke recharged and ready for our little man to kick Biliary Atresia's ass.

They decided to let Weston rest last night and started continuous pain and sedation medications, and kept him intubated. The night nurse had to put little restraints on his arms because W was not having any of the crap-o-la in his nose and mouth.

Dr. M stopped by this morning to check on little man. He said that Weston appears to be doing well and his labs are what they would expect at this time.

Shortly after, they extubated him and it was so wonderful to hear that baby cry. He was pretty hoarse for a while, but that was to be expected.

His nurse is working on weaning him off of oxygen and will probably have him on room air by 7pm.

Billy and I went home for a few hours this morning to shower and eat something other than hospital cafeteria food. And, of course to visit with our E. She is doing well, all things considered, but is acting like she knows something is wrong. Mom says she asks for us, mainly The Daddy; and as soon as we walked in the door, she wanted to know where Baby Weston was.
She made a special sign for her baby brother and hand delivered it to him this afternoon.

Weston's super awesome and creative caterpillar dressing.

Eyes open!

Sweet Sister Sugar

She was so happy to see her brother. :)

So, Weston is awake and seems to be more alert. It's hard because he still has so many drains and various lines, we can't pick him up. And, as much as I want to talk to him and touch him, it riles him up and can cause him some pain. So, mom and dad are still sitting off on the sidelines with some occasional sneaking of kisses and modified cuddling.

If things keep progressing as well as they have been, he may be moved out of PICU tomorrow.

Yea!

Day 1: Surgery

First of all, Billy and I want to thank all of you for your support and prayers. People have been praying for Weston all over the United States, and even halfway across the world. We are so fortunate to have such a support system.

The surgeon confirmed Biliary Atresia this morning with the cholangeogram and went right into the "corrective" Kasai procedure.

Weston's gallbladder was grossly underdeveloped along with the duct system. Dr. M (surgeon) removed the damaged areas and attached his small bowel to his liver for direct bile drainage. Weston was in surgery for approximately 6 hours. He received about 40cc of blood in the OR and only lost about 30cc from the whole procedure. I have a whole new appreciation for blood donors and will have to become one myself in the near future...

The surgery went well and Dr. M was pleased with the outcome and is hopeful that he will do well. Weston is currently in the Pediatric ICU. He is still intubated (machine helping him breathe), has a special IV called a central line under his left clavicle and has various other drains in his nose and abdomen.

They are planning on trying to extubate him tonight or tomorrow morning. This is a fine balance because they want to keep his pain under control, but the pain meds depress his natural drive to breathe.

As much as I tried to prepare myself to see Weston in this state, it was one of, if not the most painful and heartbreaking thing I have ever experienced. Even though I am very comfortable with all of this equipment in my professional life, I can't bare to see it on my baby. I am taking comfort in knowing that he really doesn't know what is going on, thanks to some sedation and pain medication.

I swear I am really trying not to be a pain in the a** "nurse mom".

A big thank you to the surgical team today. It was really comforting to see a lot of familiar faces. I was so comforted in knowing that Tara (surgical tech), Brooke and Shelia (CRNAs) were looking out for my baby. And even the non-familiar faces took excellent care of him. Thank you all for everything you do. I really do appreciate it from the bottom of my heart.