Unrul-E

What a monkey this child is!

We went to lunch with Nana this afternoon. Miss Emily was having none of her grilled cheese. Instead, she wanted to run around and chat up the other patrons of Panera.

Nothing helps form an impression like an adorable, but pushy toddler refusing to cooperate and running up to strange men, "Hi Daddy!"

ugh

I have to admit that in the past, I have judged parents who put their kids on "leashes". And judged harshly. But now I find myself contemplating one...maybe a whine control collar, too.

PS:

E felt Weston was a pretty stand-up guy today, and deserved a sticker...

Met with the Surgeon, Have a Plan

Have I mentioned that we have been to Dell Children's and its surrounding campus every day this week??

I met the Pediatric General Surgeon this morning, Dr. M. 

After talking with him, I have to say that I finally feel confident that everything will be ok.

I've been spending a lot of time bouncing around the different grief stages, staying mostly in "anger", but hopefully now I can accept the situation at hand and move on.

Weston will have laparoscopic surgery on Wednesday. They will take the liver biopsy and try to do the cholangeogram (where they try to shoot dye through the gallbladder) at this time. If they are unable to perform the cholangeogram, due to destruction of the duct system, aka Biliary Atresia (BA), he will then open his abdomen and perform the Kasai procedure right then and there. 

So, Wednesday we will finally know if it is BA and if so, it will be "fixed" right then.

Dr. M had some encouraging information regarding Weston and his prognosis, should he have BA. Weston's liver is still soft and it appears that he is moving some bile into his intestine (judged on the color of his poopy diapers). While this is not enough to say he is out of the woods for BA, it is promising that IF it is BA, the disease is not as advanced and he has an increased chance for the procedure being successful.

Old research broke the prognosis post Kasai procedure into thirds: a third of kids would basically be "cured" by the procedure and not have any issues; a third would do well for a while, but would ultimately need a liver transplant at some point in life; a third would not be helped by the Kasai procedure and need a liver transplant right away. Dr. M said that recently the total success rate for the procedure has increased some.

One more day of vitamin K injections. Dr. Z (GI doc) and his nurse have been very good to us, as well. His nurse has spent a lot of time with me and I feel very supported and that they really are concerned about Weston. 

We Need More Smiles

We have suspected that Weston may be part puppy...the puppy dreams, the barking in his sleep, and evidently he likes it when you howl at him.

Check out this awesome big sister and mommy's best helper.

Change of Plans

We were scheduled to go in at 0700 tomorrow for Weston's liver biopsy...the leg work was done, I requested my pick of anesthesiologists. Unfortunately, today's blood work showed that his bleeding time is prolonged, more than likely due to Vitamin K deficiency. Bile helps absorb fat soluble vitamins, such as Vitamin K. Since he is not excreting bile into his intestine, he cannot absorb these vitamins. 

SO, after all the phone calls and preparations, Dr. Z called me this evening to postpone his liver biopsy (not a good idea to poke the liver when you have a propensity to bleed longer than normal) and set up Vitamin K injections for the next three days.

I spoke candidly with Dr. K this evening. I expressed concern about the frequency of needing blood drawn and IVs for this test and that procedure.Weston is a very hard stick, 6-7 yesterday and 2 today...he's had enough and frankly, so have I. I asked if it was possible to place a longer term "IV" so that they could draw lab from it, and use it as needed for procedures. This is something that may be considered depending on the diagnosis.

He said that he is concerned is more concerned that it is biliary atresia because the HIDA scan showed that his liver is not excreting any bile at all. But, he is still hopeful that it is not because his liver was soft upon palpation last week. Right now he feels there is a 50/50 percent chance that it is atresia. Not something that we really wanted to hear.

The plan...Vitamin K injections for the rest of the week. Monday, they will arrange for an anesthesiologist to draw another lab to check his clotting and bleeding time. If he has shown improvement, he will have his biopsy and intraoperative cholangeogram on Tuesday. If there is no improvement, he will have to receive plasma during his procedure. Lets hope the vitamin k works and we can avoid blood products. We may meet with the pediatric surgeon some time this week to discuss his surgery.

I am so looking forward to Saturday and Sunday. Two whole days without him being stuck. Two whole days of not having to go to Dell and its surrounding area.

HIDA Scan

Weston had his HIDA scan today; and much like everything else done up to this point, offered no answers.

The test basically involves injecting a dye that acts like bile in order to trace the pathway from the liver to the small intestine.

As of 3pm, there was no evidence of the dye outside of the liver.

Tomorrow morning he has to go back for a quick look to see if any of the dye has made it out and to have more blood drawn.

He is having a liver biopsy Wednesday, which involves anesthesia and an overnight hospital stay.

We are tired of seeing our baby repeatedly poked and prodded, and not getting any answers. This biopsy may not even be the missing piece to the diagnosis. There is a pretty decent chance that he will need a small surgery next week for better visualization and imaging of the liver and gallbladder.

This is taking its toll on everyone. Billy and I couldn't believe it has only been 10 days since this all started. Seems more like months.

GI Specialist Appointment

This has been the longest week.

We met with the pediatric GI specialist this morning. 

He was able to rule out the majority of viral, metabolic, genetic and hormonal causes.

There were a few tests that we were apprehensive about, and are happy to know that they are no longer possibilities.

Some other good news, Weston gained 4oz since Monday. He is now 8lbs 14oz. Yea!!

So basically Dr. Z said that we are still looking at it either being Biliary Atresia or idiopathic.

Biliary Atresia is a congenital defect in the liver's bile duct structures not allowing the liver to drain bile. As a result, the bile backs sits in the liver, and it develops cirrhosis.Children with this condition must have surgery to try to correct the problem. While the surgery is usually successful when done early in life, it is a huge procedure with a long recovery. Unfortunately, a large number of these children still end up needing a liver transplant at some point in their lives.

Idiopathic means they have no idea what is causing the liver to be inflamed. Most idiopathic cases resolve on their own and the kids usually end up doing ok without long term complications.

Of course, we are hoping for idiopathic. 

The doctor said his liver was slightly enlarged, but soft which is a good sign. He said cases of Biliary Atresia usually present with a very hard liver. His spleen was normal and not enlarged, another good sign. 

He had liver function tests drawn today. If I am remembering correctly (because I did not have the previous results in front of me), his billiruben levels have gone down a bit; but some other levels (ALT/AST) did go up. I don't know what this means. If they had improved significantly, we would have been able to delay the testing...

On Monday, Weston has to have a scan done where they inject a dye and watch to see if it follows the correct pathway that bile should from the liver to the small intestine. In order to prepare for this test, he has to take a medication twice a day to help stimulate bile production, in addition to his new vitamin. Both of these medications stink and make MY stomach turn just smelling them...I feel so bad that he has to take them.

We are also preparing ourselves for the high probability that he will have to have a liver biopsy and/or small operation to look at his gallbladder and its function.

As you can imagine, not having any answers has been absolute pure hell for Billy and I. Speculating "if it is this, then this horrible complication could arise", has been torturing us. 

I asked the doctor about his gut feeling/instinct on Weston's outcome; if he felt it was going to be detrimental. 

He of course could not guarantee anything, but did feel instinctively that this issue would not result in a detrimental outcome.

All we can do at this point is pray that it is not Biliary Atresia, and that he continues to be healthy otherwise and gain weight appropriately.

Back To School

That is the face of a happy girl!

Emily could not wait to go to school today 

:)

So Much To Love At 1 Month

Happy 1 month birthday to Weston!

It's been a crazy month, but he is so worth it.

Some of my favorite things...

You are such a good baby...you love your sleep!

You seem to be very happy...or you are really gassy, because you smile all the time. Awake and asleep.

You bark in your sleep.

You love to cuddle and hold hands! <3

I love your tree frog pose and goldfish mouth.

(Tree frog- your ability to literally stick to someone's shoulder and upper chest without support

Goldfish mouth- when you see your dinner being prepared, so to speak, you start opening and closing your mouth like a fish)

We love you, Weston!

Here's hoping your second month of life is kinder to you than the first.

Wordless Wednesday, Part Deux: **RoCkStAr**

Wordless Wednesday: Emily's Home!

Pediatrician's Appointment

We met with Weston's pediatrician this morning. Honestly, we were not expecting much from this visit. So, I guess it wasn't too disappointing when we really didn't get any answers.

After discussing our hospital stay and some of the lab and procedure results that have returned, the pediatrician suspects a "plumbing problem". Something is not allowing the bile to drain from his liver properly. He actually gave us the ultrasound report; and it reported that it appeared that his gallbladder was not only small, but collapsed. The doctor did not have an explanation for this. 

Biliary Atresia came up again...the ultrasound showed that he didn't have any of the classic, obvious signs of this condition. However, it couldn't be ruled out at this time. But, if his guess would be that it was a very mild case, if it is the culprit.

We left with the impression that our appointment with the GI specialist on Thursday will lead to at least one other invasive test and more than likely, will ultimately involve some surgical intervention.

Again, this is just our educated guess and speculation. 

We will have to wait till Thursday to find out his thoughts and plan.

Some good news...

Weston was 8lbs 10oz today! 

He has finally passed his birth weight, having gained 4oz since Friday.

While the rash is not gone, it is looking a lot better, and the doctor feels it is baby acne.

Emily is still at Camp Nana, and we miss her terribly. But, she is having fun and Nana and GD are enjoying their time with E. It is reported that she is eating like a champ, and everything is "delicious" or "soooo good".

Prayers for Weston, Please

When Weston was born, he weighed 8lbs 9oz. He was 7lbs 15oz when we left the hospital.

Tomorrow he will be 4 weeks old, and he has still not regained his birth weight.

Friday (8/13), we went to the pediatrician's office for yet another weight check.

Poor weight gain of 1oz in a week, coupled with a rash on his forehead and still having jaundice was cause for concern. He had blood drawn and it revealed that his bilirubin level was high, indicative of some kind of liver malfunction. The pediatrician admitted us to Dell Children's Medical Center Friday evening for testing.

In the course of 24 hours, we met 6 doctors.

This type of issue can be caused by one of seemingly 100 things. Weston has been tested for everything from an infection to Cystic Fibrosis to anatomical defects.

As of discharge Saturday afternoon, we don't know what is causing his high bilirubin, his lack of weight gain or his rash; but we do know:

1. He has not suffered any liver damage at this point

2. He does have a gallbladder, but it is on the smaller size

3. The GI specialist feels that it is very unlikely Biliary Atresia, a very serious anatomical issue

4. Though he is not gaining weight, he isn't loosing it; and other than the three root issues, appears to be a healthy baby

5. Whatever the cause, it isn't aggressive or damaging enough at this point to necessitate him staying in the hospital

The plan is to follow up with Weston's pediatrician tomorrow, Monday 8/16 and the pediatric GI specialist on Wednesday 8/18. By Wednesday, most of the metabolic labs should be back, and hopefully we will have an answer. It is incredibly frustrating to see your infant child being tested for all these horrible diseases and conditions, and then having to wait what seems like an eternity for the results.

Billy and I are so appreciative and grateful for all of our family and friends that have been calling, texting and praying for Weston. We are especially grateful for my mom and dad that have been taking care of Emily while all of this has been going on. We love you, Mom and Dad. Thank you so much. 

We are happy to be at home today and are laying low, enjoying snuggle time with Weston.

Weston seems to be relieved to be home, away from the needles and prodding. He slept really well last night and has been eating like a horse today.

Please continue to pray for Weston, and all sick children.

It is truly heartbreaking to see such vulnerable creatures in dire situations.

As we learn more, we will update.

Three Weeks Old!

What To Do On A Sunday...

Get a little exercise

Mow the yard

and er, the plants

 

Hang out with a devilishly handsome younger man

Check Ups and Snuggles

Weston went for his 2 week check up this morning.

Since having his tongue tie snipped, he has been nursing so much better...and more frequently!

With the frequency with which he has been eating, you would think he would be 10lbs by now. 

Surprisingly, he was only 8lbs 5oz and 22". 

All the calories must be fueling his vertical growth. He grew a full inch from his last visit a week and a half ago! 

And now for a moment of super sweetness...

We particularly enjoyed the "baby taste-test" at the end.