Why Did I "Weight" this Long???

So yesterday, I bought a HealthOMeter infant/ toddler scale to have at home so that I can monitor Elise's weight gain a littler closer.  Now I'm asking myself, "Why did I even "weight" this long??"  It's a great purchase, well worth the money, as far as I'm concerned.  Today, Elise weighs 11 lb 4 oz, which is just a 3 oz gain in the past week. I called Elise's dietician to review everything this morning...and she said that she's okay with the slow gain for now...at least she's gaining! She said that it is normal for babies to slow down with the weight gain at Elise's age. That makes me feel a little bit better.

Also, Elise's doctor says her Pre-Albumin level is GREAT, which is a good indicator of nutritional status.

Anyway...now that I have an infant scale at home, I can stop bringing her in to the office every week for weight checks. I'm going back to work in two weeks, so this will be a HUGE help!  She has clinic appointments often enough as it is...it will be so nice to eliminate the additional "weight check" appts in between.

Speaking of appointments, I was not able to get an appointment for Elise with the pediatric Urologist until the end of April!  I was hoping for something a little sooner....like this week...but no luck.  I HATE waiting for answers.  I don't even like waiting one day, so having to wait two months is really pushing it... lol!

The best part though is this...I called Elise's doctor to tell him that the earliest appt I could get is April 24, and I asked if he or his nurse could call and try to get in a bit sooner. He told me, "You don't need to worry about it...April should be fine." Well, maybe he shouldn't have ordered a VCUG test and made a referral to a Urologist if he didn't mean for me to worry about it. That train has now left the station!  Seriously, I will try not to worry so much about the urinary reflux....but it's very difficult.

Anyway, Elise is still generally doing very, very well!!  Her labs are terrific, she's eating well, slowly gaining weight, smiling, laughing, playing....and LIVING!!!  Two months ago, I swore that I would not let Biliary Atresia hold Elise back in any way...and let me tell you... it is not.

Just one more thing...

Well, as I have recently been only too happy to report, Elise has been doing extraordinarily well....much better than I ever imagined she would be this point, just 2 months post-Kasai. As a result, her liver clinic appointments have been seemingly more routine...not alarming by any means. However, at this last clinic appointment this past week, we were just about to leave the office when the doctor added "one more thing;" he said that Elise needed to be tested for urinary reflux. You could say I was less than excited to have to bring Elise back to Children's hospital for another test, exposing her to another dose of radiation, but the rationale did seem reasonable, and the benefits of this test reportedly outweigh the risks, so we scheduled the VCUG test.

This past Friday, I brought Elise to Texas Childrens' for the voiding cystourethrogram (VCUG), and the result is positive; Elise has grade 4 urinary reflux, which is obviously not good news. The doctor said that 80% of babies with urinary reflux outgrow it, so we could just "wait and see," and re-test in about 18 months...but...in the meantime, she would slowly be incurring kidney damage. We will be bringing her to a pediatric urologist within the next week at Texas Children's Hospital to further explore our options.  After doing some research and speaking with Elise's pediatrician and GI doctor, I am in favor of attempting to "fix" the problem now by having the urologist perform a "Deflux"procedure.  ANYWAY...this is just one more thing, but at least there is a fairly simple solution, and we can look forward to eliminating this issue.

On a bright note...David, Elise, Ethan, and I had dinner with a fellow "liver family" last night.  It was just so wonderful visit with them and to share experiences and ideas. They, along with many other liver families and friends, will be participating in the Liver Life Walk Houston 2012 next month with us.   By clicking on this link below, you can learn more about this event and visit Elise's personal Liver Walk fundraising page:

"Click" HERE to visit Elise's Liver Walk Houston 2012 personal page

OH Happy Day!!

I brought Elise to Texas Children's Hospital today for her liver clinic appt with Dr. Fishman. It went very well!  Her weight is now 11 lb 1 oz, up from 10 lb 4 oz three weeks ago. She's still just in the 3rd percentile for weight though, so the dietician advised me to start giving her 3 mL of pure coconut oil or MCT oil daily. That will add lots of calories and fat to her daily intake which should help with weight gain. The dietician also says we can start introducing solid foods like rice cereal and fruits; however, at this point it's mostly for development and taste, not nutrition. Elise still needs to be taking in at least 30-32 oz Pregestimil formula (24 cal/ oz) daily. 

And Elise's liver panel still looks wonderful...even better than 3 weeks ago!  Her conjugated bilirubin level remains at 0.0, which is as good as it gets! Her AST, Alk Phos, Albumin, and indirect bili are all down also, which is great!  Her ALT is slightly up, but not too bad, and then the lab made an error and didn't draw her GGT, which is one of the values we've been watching very carefully....so that is really frustrating.

Here's Elise's actual liver panel for anyone interested:
AST: 113          (normal range 20-60)
ALT: 83            (normal range 6-50)
ALK Phos: 364   (normal range 110-320)
Albumin: 4.4     (normal range 2.8-5.0)
Conjugated Bili: 0.0  (normal range <0.5)

We are still waiting on her vitamin levels and some other blood tests which were sent off. 

But...like Dr. Fishman says...looking at the patient is just as important as looking at the numbers, if not more important than the numbers...and Elise looks GREAT.  Actually, she looks AMAZING to me!!  Really, he said that we can rest assured that her liver is working just fine right now. Her color is pink, her tummy is less distended, there doesn't seem to be any fluid build up or ascites, she has no bleeding or vomiting, she's eating very well, and she is gaining weight.

After liver clinic, we went to see Elise's regular pediatrician to get her second dose of the RSV vaccine.  Hopefully, this vaccine will help to keep her from getting sick when she starts day care!  I'm happy to announce that Elise has been medically cleared by her GI/ liver doc and her pediatrician to go to day care, which means I can go back to work!!  I am being offered the opportunity to return to my job at UHC, and I have pretty much accepted!!  I have a potential start date of March 12, 2012!  This will go a long way towards restoring normalcy to my life and to our family routine, and for that, I am truly grateful. 

Oh happy day!! 

Laissez les bon temps rouler!!

"LAISSEZ LES BON TEMPS ROULER!"  Let the good times roll!!  HAPPY MARDI GRAS!!  I was just telling my mom how I wish we would have taken a little trip back home to Louisiana this weekend to enjoy some good times and good food with good friends and our wonderful family!!   We have so much to be happy about right now...it's a perfect time to celebrate Mardi Gras!  I could really use some good gumbo, jambalaya, king cake, and a daiquiri!  And maybe Elise would gain weight just by smelling the yummy food...LOL!!

Anyway...my parents, a.k.a "Grammie & Paw," spent this past weekend with us...and we had such a wonderful time! The weather was terrible, but Ethan still thoroughly enjoyed his play time with his pal, Paw, and Elise was loving her extra cuddles from Grammie....actually they both enjoyed lots of extra cuddles from Grammie!!

Well...Elise and I are going to Texas Childrens' Hospital tomorrow for a liver clinic appointment. I'm trying not to get nervous...because there are no indications that we will get bad news.  I mean, her poops have never looked better, she's eating at least 30 oz per day,  and she has no signs of jaundice in her skin or eyes. Peachy... right??  Well, in addition to her liver panel, I'm still asking for her vitamin levels to be drawn and for an ultrasound to be ordered.  I want a complete abdominal ultrasound done so I can see things up close and personal...and hopefully rule out Ascites.

One last thing...I want to thank everyone who has sponsored Elise in the Liver Life Walk Houston 2012.  The support is just overwhelming and means so much to us! We still have a little over a month before the event, which is scheduled for March 31st.  David and I will be walking while Ethan and Elise ride along in the stroller. We are on the "TCH Leapin' Liver Team" which is being led by Elise's GI doctor/ hepatologist. The funds raised will be going to the American Liver Foundation to support research, advocacy, and education related to liver disease.   Here's the link for anyone interested in visiting Elise's personal Liver Walk page:

"Click" HERE to visit Elise's Liver Walk page!!

Elise Marie, 4 months old!!

Before My Eyes

So much is happening these days, right before my eyes....

Elise is thriving and doing so much better than I ever imagined.  It has just been 2 months since she went to surgery for her life-saving Kasai operation, and she is already laughing in the face of BA. It's just surreal to think that before this "Kasai" operation was developed, babies like Elise, born with Biliary Atresia, would die in their first year of life.  Sure, Elise's battle is not over...odds are that she will still need a liver transplant at some point...but she has proven that she is a fighter, and this is one BAattle that she plans to win! She already has excellent labs, a great appetite, and good weight gain. She is eating more than 30 oz Pregestimil formula per day!  In fact, today she started eating 6 oz per feeding!! The doctor says, "LET HER EAT!!"  The GI/ liver team at Texas Childrens likes their BA babies nice and plump!  Well, Elise has a way to go before we can call her "plump," but she's working on it!  I am watching her reach milestones every day....a miracle is happening before my eyes.

Ethan is now 15 months old!  He just started walking last week...but he has really taken to it. First, it was just a step here and a step there, but now it's like he's saying, "Catch me if you can!" He darts across the room sometimes, like a little streaker! And tonight, Ethan started eating with his fork!  He actually took the fork out of my hand and put it in his mouth...as if to say, "I can feed myself, Mom!" Alrighty then!  He has also shown me this week that he can climb up the stairs!  Today, David walked in the front door with him, and they saw me at the top of the stairs....so David put him down, and up Ethan went...all the way up the stairs...with David right behind him, of course!  Wow!  Ahhhhmazing!!! Oh...but much to my dismay, he has learned to open doors.  We're going to have to step-up our baby proofing. Anyway, my little baby boy is just growing up SO fast....and it's all happening right before my eyes!

Well, I'm now seeing little white sheep before my eyes...so I suppose it's time for bed!  Nighty Night!!

Happy V Day!

HAPPY VALENTINES DAY!!  I must say, however, that Ethan and Elise are not having such a happy V Day....because to them, "V Day" means "vaccinations day." Ethan got his 15 month shots today, and Elise got her 4 month shots. Ethan started sobbing from the moment we walked into the clinic lobby....poor baby. At least Elise didn't know what was coming until it was too late. She was a trooper though....she only cried for a minute or so.  Ethan, on the other hand, cried the whole way home.  And as for me...my skin has become a lot tougher after everything I've seen little Elise go through.  Shots are the least of my worries....unless of course she develops a fever tonight...in which case I'll be up a creek without a paddle, because Elise can not take Tylenol due to her liver damage.

So while we were at the doctor's office today, Elise's pediatrician discovered that Elise has not had a VCUG test done yet-- a urinary reflux test- which is one of the diagnostic imaging studies that she apparently feels is indicated.  So, she grabbed the phone and of course called the on-call GI doc at Texas Children's Hospital, and they put her on the schedule for next week. Lovely. Now I get to spend the next week worrying that Elise might have kidney damage. She has already had two negative renal ultrasounds though, so odds are that her kidneys are fine. Right?   RIGHT???  Wow...these people sure know how to work me up!

Anyway....Happy Valentines Day to everyone. Hope everyone is enjoying their valentines as much as I am enjoying mine!!

"This Makes Me Sick"

"THIS MAKES ME SICK!!"  How many times have I uttered those words lately? So many things make me sick, including but not limited to Elise's medical issues, fear of the unknown, troubles of others in "Liverland," the tragic loss of a fellow liver mom this week, financial stressors.. and the list goes on.  

It's true though. I have been physically ill now for the past three days...and today, I woke up with no voice. I have a constant headache, fleeting nausea, sore throat, body aches, and congestion.  This is the second time I've been sick in the past month!  I don't even really have a primary care physician yet, because I've not needed one since we moved here to Houston in 2010.  It seems that my super immune system is currently taking a hit with this new all-time high level of stress, however, so I need to establish myself with a family doctor.  I'll put that on my "to-do list." 

I am scheduled to bring Ethan and Elise both to the pediatrician on Tuesday for vaccinations. Ethan is getting his 15-month shots, and Elise needs her 4-month shots.  I scheduled them both at the same time, on the recommendation of the nurse. As I think more about it though, I must be crazy to be getting their shots done at the same time...especially on a day when I have no help!  Oh well...I just as well get it done sooner rather than later.  It's just....the thought of trying to manage two screaming babies getting shots at the same time....THIS MAKES ME SICK!!