Leapin' Liver Mom

SO....we're just getting back today from the Liver Life Walk Houston 2012! It was AMAZING!!  First, let me say THANK YOU so much to all of you who sponsored Elise and helped to support us in our fundraising efforts benefiting the American Liver Foundation (ALF).  Our team was the TCH Leapin' Livers!  Elise raised $440...our team raised $7,545...and the whole Liver Walk event raised $86,922.  Awesome, right?  I KNOW!!  But what was even more awesome was spending this beautiful day with all of our new liver family friends!!  It is just the most wonderful thing to see all these kids happy, healthy, and thriving.  Some are kasai only....some are post transplant...but all are so amazingly strong. Our babies are so special!

I wish I could have taken more pics...it was difficult to round everyone up in one place at one time. But I did manage to get a few pics to share with everyone...I hope everyone can see what a special day this was for us!

Liver Life Walk Houston 2012-  3/31/12-  Terry Hershey Park

And...we're off...stompin' out Liver Disease one step at a time!!  

Leapin' Livers!!!  Our TCH team!!   Dr. Leung modeling our shirt...

Dr. Fishman- Elise's awesome liver doctor

Dr. Himes...another awesome liver doc at TCH who has seen Elise many times and actually diagnosed her with BA after reviewing her liver biopsy back in December 2011.

My little ham, Ethan,  enjoying his day out at the liver walk!!

Posing with two favorite little people....Ethan and Elise...

Visiting with baby Audric and Andrea.   Audric is now 6 months post transplant and doing GREAT!! :-)

Daddy and Elise...stopping to take a a little break!  

Elise hanging out next to little Abby (Kasai only and doing FANTASTIC) and mom Tara...

SO happy to see my fellow liver mom Michelle and big baby Tayden!!  Michelle was the very first "liver mom" to reach out to me after Elise's diagnosis...she came to see us at the hospital right after Elise's Kasai.  

Sweet baby Elise enjoying her day!!

A few liver friends...the kids are Audric (6 months post transplant), baby Tayden (kasai only), Elise (kasai only, and Claire (2 months post transplant)....and us proud liver parents!!!  

Urology Consult....Done!

Today, I brought Elise to see the TCH pediatric urologist to whom she was referred after her VCUG test was positive for grade 4 kidney reflux.

I'm a little ambivalent about the results of the appointment...
On the one hand, I really hate to have to put Elise through anything else right now, so in that way, it turned out great.  The doctor reviewed her VCUG images, the radiology report, and previous labs and confirmed that she does have high grade reflux. As for as an action plan, he said he recommends we just continue the meds she is already taking, which include the antibiotic Bactrim 1.5 mL twice/ day.  He said would not recommend surgical intervention to stop the reflux at this point because she was already sick and hospitalized both times she had a UTI, so we really have no confirmation that the UTI was primary in either case.

Now on the other hand, I sort of feel that this whole VCUG test and urology consult was a waste of time and money. I say that because the doctor was very condescending throughout our discussion and made me feel as though my questions were ridiculous and the appointment was a waste of his valuable time.  Also, he made the same point that I brought up to Elise's treatment team.....she has never just randomly turned up with a UTI.

Anyway, this urologist did make me feel a bit better in that he said that as long as she is not experiencing urinary tract infections, the reflux is not actively damaging her kidneys.  If you recall, I was very upset last month when the resident radiologist told me that there was progressive kidney damage happening even in the absence of infections.  SO, if that's not actually the case...then great!  We'll just try to forget about this whole urinary/ kidney reflux thing until next year, when it is recommended that we repeat the tests.

Catching Up...

I've been meaning to post this for several days now...but this week has been busy, confusing, and fun...all at the same time. So here's to catching up!!

On Wednesday morning, I brought Elise to her "liver clinic" appointment at Texas Children's Hospital. That's where the confusion set in.  After the initial weight check and examination, the doctor said, "Well, she looks great!" Then I started asking questions... a lot of them. I concentrated the doctor's attention on her abdomen, which has been distended for months now. He ordered an ultrasound, which is exactly what I wanted, and it was not long before the results were in. As we discussed the report, I was happy to hear that there appears to be just "a trace" amount of fluid...not enough to treat; however, the next issue was the scarring on Elise's liver, which was apparently visible on this ultrasound. My initial reaction was that this is not really new information, since Elise's surgeon already informed us that  some of her liver tissue was found to be cirrhotic. But then, the doctor told me that the ultrasound seems to indicate that Elise's liver may be a little more sick then we've been thinking. He said that he will give her 2-3 more months to "declare herself," meaning that her condition over the next couple of months will basically dictate our next steps...either we will "stay the course" or "take more aggresive measures."  OMG...enough with beating around the bush, right? I asked, "Are you talking about listing her for transplant?" Her doctor then told me that he's just not certain whether she will actually need a transplant within the next year, or even 2 years, but he feels very confortable saying that she will require a transplant before age 5.  Can you sense my frustration?  I mean, what exactly am I supposed to take from this?  I suppose the bottom line is that only God knows what the future holds. 

Time for an Ultrasound!

All done!  Going home now!!

Anyway, the good news is that Elise does not currently have Ascites (fluid in and around her tissue), and she is currently meeting her weight gain goal of 24-30 grams per day.  She weighed 12 lb 1.5 oz and was 23 inches long at clinic on Wednesday!

On Wednesday evening, I enjoyed a night out with several of my fellow "liver moms." We went to "Painting with a Twist" in Friendswood. SO much fun!!  And to make it even better, they made it a fundraiser for us, with 50% of the night's profits benefiting the American Liver Foundation and Liver Walk Houston 2012. So, it was "Painting with a Purpose" for us.

Painting with a Twist  3/21/12

Fellow "Liver Moms"with our works of art..."Painting with a Twist" night...

Tara, Erin (me), Harriet, Jennifer, Andria, and Kelly

Wonderful Weekends!!

This past week was my first week back to work...and oh how I am enjoying my weekend at home with my family right now!  I just can't get enough snuggles with my babies!! Unfortunately, the weekends go by too fast....and this one is just about over. When I finish this post, I need to go prepare Elise's bottles for daycare tomorrow and finish laundry for the week.

Yesterday, David and I brought Ethan and Elise to the mall to take a picture with the Easter Bunny!  It was lots of fun, and it will of course be an annual tradition,  along with Santa pictures at Christmas. Anyway, Ethan got a big kick out of the giant Easter Bunny this year....he was cracking up the whole time he was on the bunny's lap.

Anyway, Elise's first week at "school" went very well!  She has continued to gain weight steadily though out the week, so I feel confident that feedings are going well, which is what they are telling me.  As of this morning she weighs 11 lb 15 1/2 oz....so just about 12 lb now!!  She is doing better and better every day with tolerating the MCT oil and Polycose Powder added to her formula for additional calories and fat.  We will be seeing her dietician this week, on Wednesday, during her "liver clinic" appointment at TCH.  I think her doctor and dietician will be very pleased with her weight gain.  Of course, I'm still anxious about her labs though.  I will feel so much better when her GGT level begin to come down.

OH, and Elise is 5 months old today!!  WOW!!  :-)

Back to Work!!

So, I have now completed Day 2 back at work.  I was fortunate enough to be rehired by my last employer, and I just know I have made the right decision.  But let me tell you....it has been more difficult than I even imagined to actually leave my baby girl at daycare.

Elise....all packed and ready for her first day of "school!"

I've been home with Elise for just about five months now...all day, every day.  I have worked tirelessly at refining a feeding and activity routine which meets her dietary and developmental needs. It is SO incredibly hard to hand her over to daycare with the assumption that they will do for her what I do.  I mean, it seems impossible to me that anyone, for any amount of money, would really care for her the way I do.  Well, I would not be at work right now if I did not believe 100% that Elise is receiving the best physical, emotional, and developmental care available.  It might cost almost 40% of my salary to have both of our babies in daycare...but it's completely worth it.

I am so grateful that I have come to know and trust the teachers and other caregivers there at Children's Lighthouse though....since Ethan has been going there for over a year now.  I mean, the director and staff know us...they know Elise....they know her situation...and they show that they truly care and understand the anxiety that I feel.  Today, Elise's lead "teacher" texted me a picture of Elise with a message that she was doing great and was "all smiles."  I can not even explain the emotion I felt to receive that unexpected message at work....let's just say it made me very happy.

text message: "All Smiles!!!"
A SWEET picture of my baby girl, texted to me by her "teacher" Roxy to brighten my day at work!!
SO THOUGHTFUL!!  

My Birthday Weekend

What a wonderful weekend!  So, my 28th birthday was this past Friday, and I can't imagine a better celebration!  My mom and dad came in to spend the weekend with us, and my sister, Tiffany, came for a visit too!  We went to Rodeo Houston on Friday night to see the Reba concert, which was fabulous!!  Tiffany stayed at the house and babysat for Ethan and Elise, which was such a treat for them!  Tiffany is SO good with both of them....they both just LOVE her.  And as I've mentioned before, Ethan is never happier than when he's with his best pal, Paw!

Ethan is just growing up so fast!  It seems like yesterday he was just barely crawling, and now he's walking around everywhere...pretty soon I'm sure he'll be running.  He is taking much more of an interest in his books now too. He actually picks out books and brings them to us to read to him....it's just wonderful....really special times....and I'll be happy to read Brown Bear to him a thousand times if he wants me too.

Now that mom, dad, and Tiffany have left to go back home, I am cuddling with my babies and preparing for my return to work tomorrow! If you missed my announcement a few weeks ago, although I resigned from UHC in December, I have been offered another position with the company, and I accepted.  I feel certain that this is the best decision for us right now.

OH, and I'm thrilled to report that Elise does seem to be gaining weight on her new diet, with the addition of the Polycose powder and increased MCT oil.  As of today, she weighs 11 lb 11 1/2 ounces!!  That's almost a 6 oz gain since Wednesday!!  WOO HOO!!!   Such a relief!  I just hope this trend continues!

Running out of Tricks

Well, Elise had a "liver clinic" appt today at Texas Children's Hospital.  I really don't want to rehash every detail...but suffice it to say that the tone was not as bright as I would have liked.  I mean, it could be much worse though.  So, although Elise's conjugated bilirubin level is still perfect at 0.0, and most of her other liver enzymes are also trending down towards normal, the big problem we have currently is an extremely high GGT level at 1796 and lack of weight gain.  She currently weighs 11 lb 6 1/2 oz, which is barely on the growth charts for her age, 4 1/2 months. Dr. Fishman basically said that looking at her GGT levels which continue to increase at each draw, and considering her slow weight gain, he has to conclude that she has very poor nutrient absorption and abnormal liver function, which typically results in "failure to thrive," which is one of the indications for transplant.

Up until now, Dr. Fishman has been very hesitant to even mention the word "transplant," because he has always said that we were not on that road yet. So, of course, I began questioning him like a mad woman. Mainly, I wanted to know if the fact that he is mentioning transplant means that it is in our near future.  He said that he is not 100% sure, but that he didn't want me to be shocked if she is referred for transplant evaluation within the next year...if things don't shape up with her GGT and weight gain.

Before Dr. Fishman left the room, he said, "Just try not to think about it so much."  I looked at him, like, "Are you kidding me?" He sat down again and tried to convince me that for the sake of my mental health, I need to let him do the worrying. He even said he would be happy to keep all of her lab result details to himself and just tell me generally "good" or "bad," and "stay the course," or "here's the changes we need to make." While I appreciate his concern and understand his rationale, that's just not going to work for me right now. I feel that I need to know every detail because it's the only way that I feel well-informed and able to ask appropriate questions and advocate for Elise as needed.  To not keep myself informed is to be passive, and that's just not for me when it concerns my child.

SO, the dietician met with us during our appointment and adjusted Elise's diet yet again in an effort to increase her calories and nutrition.  Now I'm supposed to mix Polycose powder 3 cal/oz into her Pregestimil 24 cal/oz and also give her 2 mL of MCT or coconut oil three times per day. She said she is "running out of tricks" though, so if this does not produce significant results, the next step will most likely be an NG feeding tube. I've mentioned before how I feel about the feeding tube...but bottom line is that we will do what we have to do.


ELISE'S LIVER PANEL-  3/6/12
AST- 100           (range 20-60)
ALT-78              (range 6-50)
Alk Phos- 406    (range 110-320)
GGT- 1796        (range 11- 82)
Albumin- 4.4      (range 3.9- 5.1)
Bili Unconj - 0.2 (range < 1.0)
Bili Conj-  0.0     (range < 0.3)

A Day in the Life of a Liver Mom

I brewed my cup of coffee this morning, sat down at my laptop, and...what's this? OH, I found that I won a couple of bids on E-bay!!  WOW!  I got a bottle of the AquADEKs vitamin drops for the starting bid of $0.99!!  And then...I also "won" two cases of Pregestimil formula for about $60 each, which comes out to $10 per can, which is about 1/3 of the retail price!  Ahhhh....I LOVE E-bay....and Amazon....and.....oh never mind.  Seriously though....saving some money here and there adds up to A LOT when you consider everything.

So, after I got over my E-bay wins, I weighed Elise on her new very own infant/ toddler scale.  She weighs 11 lb 7 1/2 ounces.  That means she has gained just about 8 oz in the past two weeks.  It does make me happy that she is at least gaining weight...however slowly...but I'm just nervous that it's not enough.  We have a liver clinic appointment tomorrow, so we'll see what the doctor and dietician have to say about it.

I was hoping to have a nap when David got home today, since he was home fairly early; however, that didn't quite happen. Around the time that David walked in the door, I was feeding Elise and noticed that she felt warm.  I immediately checked her temperature....with three different thermometers...and concluded that she was running a fever of approximately 101.  Because of her liver disease, we are not supposed to give her any medication without consulting the doctor....SO, I sat down to call the doctor.  Which doctor?  Well, I have our regular pediatrician's cell phone number on speed dial, so I called her first.  She said to "just watch it" and call back if it continues to get higher.  I initially thought this sounded like a good plan....until her temperature began to creep up.  When it reached 101.8, I called the GI/ liver clinic.  Elise's hepatologist advised us to bring her in to Texas Children's Hospital to run blood work and try to rule out Cholangitis. And that's what I did.  I packed her up, brought her to TCH, and presented to the 24 hour outpatient lab to have this "stat" lab work drawn.  After the specimens were collected, I sat waiting for the results.  After about an hour, I asked the lab tech if the results were in.  She informed me that the GI doctor on call tonight would receive the results when they were in, and I should follow up with him/her to get any information.  Alrighty then.  I promptly called and had the "on call" doc paged.  Another 30 minutes passed, and no call back.  That's the point at which I made the decision to go up to the GI floor of the hospital and try to find the GI doctor who was on call...whoever that might be.  Well, thankfully, it took me only about 5 minutes to find the GI doc and "pin him down" for some answers.  I then sat outside of his "call room" for the next hour waiting for him to review all of Elise's results.

THE RESULTS WERE GREAT!!  Elise's liver panel, complete blood count (CBC with differential), and urinalysis were all normal!!  The blood work showed no indication of any big infection brewing, so the doctor released us to return home. PRAISE GOD!!

So here we are, back home, and Elise is fast asleep.....hopefully for the night.  I'm preparing to go to sleep myself, and I would love nothing more than to sleep straight through 'til morning.  I have to bring Elise back to TCH for her "liver clinic" appointment in the morning....but that's okay; it's just another day in the life of a liver mom.  

Sharing a Few Words

This collage was created by one of my fellow liver moms.  I think it does a wonderful job of capturing our reality. 

Out to the Rodeo...Yee Haw!!!

Since David didn't have to work today, we decided to bring Ethan & Elise to the Houston Rodeo.  It could have easily turned into a nightmare since Ethan didn't get his mid-morning nap, but instead, we had a really great time as a family.  David had a delicious-looking BBQ pork sandwich, I had a jumbo corn dog, we shared a funnel cake, Ethan had some chicken, and Elise had....well, Pregestimil.  We spent lots of time at the livestock show, and David brought Ethan into the petting zoo.  Ethan LOVED petting the baby goats and other animals.  GOOD TIMES, I tell ya....good times!!  Yee Haw!!! :-)

Our little cowgirl, Elise, 4 1/2 months old.

Our little cowboy, Ethan, 15 months old

Ethan LOVED the petting zoo!!

Riding the tram!