Sugar, Cream, & Reality

This morning, as I was sitting down with my cup of coffee, feeling fairly upbeat and positive, I came across a message and picture from a fellow "liver mom," which grabbed hold of me and yanked me back to reality at lightning speed. It was a picture of her baby's blood-soaked diaper related to a GI bleed, which is one of the common problems associated with Elise's liver disease, Biliary Atresia.

Baby Lillian's blood soaked diaper due to GI bleed-  posted with the permission of her mom

Of course, I have often read about varices and GI bleeds, but prior to today, I had not laid my eyes upon the graphic detail. And then, I am optimistic by nature, so I've always told myself, "This won't happen to Elise." But using that logic, I suppose the Biliary Atresia diagnosis would never have happened to Elise. Anyway, I stared at this picture for a while and then began thinking of the solutions....such as "banding the varices."

Well, as I often do, I summoned David and asked him, as a nurse anesthetist, "What exactly is involved in "banding varices?" And as he often does, he gave me the straight-forward, matter-of-fact, not-for-potential-mothers-of-a- GI bleed- patient version. Apparently, he is quite familiar with the banding varices procedure, and he spared no detail. Suffice it to say that I should have just referred to Wikipedia.

Later this morning, I read the wonderful news that one of the other BA babies, whom I think about and pray for daily, "got the call" that there is a liver available, so she is on her way to transplant today!  Then I began thinking about the gut-wrenching wait that this family has endured as their child was listed for her life-saving liver transplant....and at any time, this could be the story of our life.  We have a liver clinic appointment and labs tomorrow. What if they tell us that it's time to list Elise??  Or if not tomorrow, what about next month? And the month after that?

I've always considered myself to have a "Type B Personality," as I am generally fairly relaxed and easy going....just like my dad....if you know my dad. Well if that's the case, then I have Type B Personality with a situational anxiety disorder now.  I wonder if I still have a lower risk of coronary artery disease??

Searches for Solutions

Wow... today I decided to take a look back at my Amazon search history. I was trying to jog my memory regarding toddler toys that I have been thinking of buying for Ethan. I feel that maybe Ethan has been getting "left out" a bit lately, with David and I being so caught up in Elise's ordeal.  Anyway, I was expecting to see a browsing history full of various toys, toddler and baby items, and maybe some other incidental gift searches from Christmas. This, however, was not quite the case.

Here's a peek at the items currently found in my Amazon browsing history: Pregestimil, AquADEKS, Ergocalciferol, Carlson Vitamin D drops, MCT oil, infant weight scale, infant pulse oxometer, rectal thermometer, infant thermometer, 3 mL syringes, Dr. Browns bottles, OxiClean, stain remover, steam cleaners, carpet cleaner, fabric cleaner, Keurig K-Cups.

Of course, I didn't actually buy all of the items for which I searched. These searches resulted from various situations I have encountered during my adventures in Liverland. Here's a little closer look...

The first time I purchased Pregestimil in the store, I immediately began searching online for more less expensive offers on this formula. I didn't find any great deals for Pregestimil on Amazon, but I have had lots of luck on E-Bay.


AquADEKS is the orange-colored liquid multivitamin which Elise requires twice daily; it has been the subject of several previous blog posts, as it causes daily problems in our household.


Ergocalciferol is the Vitamin D2 supplement drops which are prescribed for Elise and cost about $150/ bottle in the pharmacy. Obviously, I was looking for less expensive online retailers....which brings me to the Carlson Vitamin D drops. Elise's hepatologist  approved this brand of Vitamin D3 drops as an alternative to the Ergocalciferol, since it is the same concentration.


MCT oil is the medium chain triglycerides which Elise needs in order to absorb fat and other nutrients adequately; MCT oil is also found in Elise's specialized formula, Pregestimil.

I have often thought it would be nice to have an infant weight scale at home to more closely monitor Elise's weight, as weight gain is a huge issue for her, as it is for most babies with Biliary Atresia. It is very important that Elise gain at least 1 oz/day, on average.

I have to bring her for frequent weight checks at her liver clinic and pediatrician's office. I searched for the infant pulse oxometer a couple of weeks ago when Elise was struggling with RSV.  I was literally staying up around the clock watching her breathe and wondering about her oxygen saturation.

The rectal thermometer and infant thermometer searches were executed when Elise returned home from the hospital, after her Cholangitis stay. I have often doubted the accuracy of the thermometers that we have at home, and I thought maybe a rectal thermometer was the answer.....or not.

The 3 mL syringes? Well, I use those syringes several times each day to administer Elise's meds. She takes  the multivitamins twice/day, the Vitamin D twice per day, Bactrim twice per day, and Ursodiol once daily.

I have invested in the Dr. Brown's bottles in an effort to reduce Elise's spit up episodes, and these bottles have indeed worked wonders.  These are the only bottles I use for her, and for that reason, I now have 8 of them!

The OxiClean, stain remover, carpet cleaner, and fabric cleaner searches have been prompted by the orange stains on Elise's clothes, our carpet, bed sheets, carrier, and stroller due to Elise spitting up the vitamins.

And finally, the Keurig K-Cup searches are suggestive of my effort to preserve my sanity; that is, I drink coffee daily, and my k-cup stock frequently runs low.

Looking back, my Amazon browsing history is indicative of one thing for sure: the life of a "liver mom."

Seeing Orange

Over the last month of so, I have frequently commented that I'm "seeing red," usually when I have been angry over various incidents related to Elise's care. Well, today I am seeing orange...literally.

You know, when we bought this house, I remember the contractor jotting down the names of several household items which we would need to purchase and use in our new home, ideally before moving in. One of these items was Stone Tech granite sealer. Granite, being a porous stone, will apparently absorb liquids spilled onto it, making it vulnerable to stains.  Well, being 8 months pregnant with our first child at the time, I ran right to Home Depot to purchase the granite sealer, so I could protect my beautiful granite countertops from the Kool-Aid and juice spills that I predicted would be in our future.  Never in my wildest dreams did I imagine the granite would need protection against the nasty, stinky, orange AquADEKS vitamins which we would have to give our baby girl twice each day. So I did apply the granite sealer before moving into our house in 2010. The problem, I suppose, is that I never re-applied the sealer. Now this morning, I woke up to find an entire bottle of the AquADEKS spilled on our counter. I'm not sure when the bottle got knocked over or how long the puddle of this orange liquid was sitting there, soaking into the stone.  All I know is that I have spent my morning trying to clean it, and I'm still seeing orange.

As a result of Elise's frequent spit-ups, I have been "seeing orange" before, which I may have previously mentioned, on things like Elise's clothes, her bed sheets, her carrier, and our carpet. These other items can be cleaned, with some effort, or easily replaced though. Seeing orange on granite countertops is just a no-good, very bad thing, because it can't be easily cleaned, and it most definitely can not be easily replaced.

I'm suddenly feeling very nauseated...and no, I'm not pregnant.

Any suggestions?  I would be grateful.

Just What the Doctor Ordered...

Not for Elise....but for ME!!! My parents treated me to a full facial and pedicure today at the Aveda Lavish Salon & Spa!! OMG...It was EXACTLY what I needed!! That's not to say that I could totally put the "liver mom"in me aside, however.

I actually started my spa treatment off with a lie; the Esthetician asked if there was anything making me particularly stressed, and I said, "no." During my facial, the Esthetician first asked me to choose between three aromatherapies. Well, I was trying, but honestly all I could smell was latex gloves, which reminded me of a hospital room, so I had to ask about it. Apparently they wear these skin-tight latex gloves which allow their hands to glide smoothly across your skin. Okay, I decided to try and block the latex smell out, and I chose the "mint" aromatherapy scent, which was quite strong. A few minutes later, the esthetician started a "milk mask." I was thinking, "Great, now I'm going to be smelling Pregestimil formula " But it was actually okay. I was able to relax, and really think about not much of anything, until I became acutely aware of the intense silence. I tried to concentrate on the soft music and nature sounds being played in the Spa, but at this point I started thinking of our tax returns..."should we itemize due to our medical expenses, or take the standard deduction?" For about a second, I felt an overwhelming urge to jump up and calculate all our medical expenses. I fought the urge. I enjoyed the rest of my facial by focusing on deep breathing and other relaxation techniques. Haven't I mentioned before that I never used my social work skills as much as I am now?? True Story.

Anyway, much too soon, this incredible facial was over, and I moved on to my pedicure. I had to choose a color. Of course I chose "green!" Why? Can you guess?! And it is not to inspire envy. I chose to have my toe nails painted GREEN to support BA/ liver disease/ transplant! Up to this point, I had not uttered a word about Elise's condition. But then I was asked, "Why green?" Really??? What version does she want?? I responded, "I have a 3-month old baby girl diagnosed with liver disease- Biliary Atresia- and I just want to raise awareness and support. At this point, the Esthetician began offering me wine like it was water! I did enjoy a glass of Chardonnay, and the rest of my spa treatment was phenomenal. Really. It was just what the doctor ordered!

A huge "thank you" to my mom and dad who treated me to my day at the spa!! MUCH appreciated!! :-)

Just what the doctor ordered!!! For ME!!!

I had my toe nails painted GREEN to support BA/ liver disease awareness!!!!

Double Trouble

Well, I must say that we are really, really enjoying having my parents here for these few days!  Having recently turned into a family of four, lots of things have doubled: double feedings, double diapers, double illnesses, etc. Nonetheless, the immense love and joy in this house has also doubled.  That's not to say, however, that Ethan & Elise don't sometimes mean "double trouble."

My parents and I arrived at the mall this morning with Ethan and Elise, and as we were walking in, we commented on the "lifesaver" that is the double stroller.  As long as we were rolling along, everything was fine, but when we actually started shopping, the trouble started...double trouble. First, Ethan began screaming at me because he wanted to keep moving; yes, he was actually screaming at me, and he can't even talk yet. Next, Elise starts spitting up the AquADEKS vitamins, thereby dying her clothes and carrier a nasty shade of orange.  Before I could even get to the bathroom to change her, Ethan has his second "explosion" of the day and also needed changing.  And through it all, they were both crying. They were crying, and several other women in the bathroom were staring...staring at me as I took a picture of Elise's poopy diaper. I felt an overwhelming urge to explain myself, but really, what could I say? It's not like there's a simple explanation for taking pictures of your baby's poop.... assuming of course that these other women are not "liver moms." Oh, and FYI, the poop was worthy of my "poop dance;" the color was a great indication that there is indeed bile flow out of Elise's little liver!  SO, I never imagined I'd have so much to say about a bathroom trip at the mall!

As we were on the way out of the mall, Ethan and Elise settled down long enough for me to run into The Loft to buy a new outfit. Let's just say that I seriously need new clothes.  I have lost about 35 lb since Elise was born, so the maternity clothes that I have been wearing for almost two years now doesn't quite fit anymore. But the whole time I was in the fitting room, I could hear them crying, so I finished up quickly, gathered everyone up, and left the mall. So taking my two kiddos for a day out at the mall didn't quite double the fun; it doubled the trouble.

Ethan (14 months), Elise (3 months), and Me

Grammie loving up on Elise

Ethan spending a little quality time with Paw

When Elise isn't happy.....no body's happy.  And Elise isn't happy being changed at the mall.

Looks like somebody needs a nap!

When we returned home this afternoon, I learned of a new resource for obtaining Pregestimil, the specialized formula that Elise requires which retails for approximately $30-$40/ can. Apparently, an organization called The Oley Foundation can link one with individuals who are willing to donate cases of the formula, and all the requester  needs to do is pay shipping & handling costs!  Wow!! There are currently 60 cans of Pregestimil up for donation!!  I requested one case at a total cost of $17.30 for shipping!!  Oh, and there are lots of other types of specialized formula and medical supplies/ equipment also available.  I added this organization's website to my "Links" page on this blog, but here it is:
http://www.oley.org/

A Bidding War

So today, I found myself in a bit of a bidding war on E-bay...for Enfamil Pregestimil!  It ended tragically with me being outbid by $1 on a case of 6 cans. I can only hope that it's a fellow "Liver Mom" who took my advice a this week and resorted to E-bay for purchasing this specialized formula. Meanwhile, I have decided to donate the many cans of Similac Neosure formula that I purchased just days before Elise was diagnosed with BA and switched to Pregestimil....these cans of Neosure are going to expire in a few months, and I know there are families with premature babies who could use it!!

Anyway, Elise's liver doctor still has not called me to discuss her last liver panel; however, he did have his nurse call me and relay the message that he wants another liver panel drawn sometime within the next week. I agreed to bring her to the lab on Wednesday, since I will be at Texas Childrens Hospital anyway on that day to meet with the liver clinic dietician and to get a weight check. I don't like this "message" thing though.  I feel that the doctor needs to call me himself regarding results of lab work, especially when he is asking for another liver panel before our next liver clinic appointment. I mean, I have questions now....like, "why do you want another panel so soon?" I thought her last results, which I posted yesterday, looked good....Is there something I'm missing??  WHY can't these doctors understand that this is MY BABY!!! We're not talking about just a fax or some meaningless sheet of paper with random numbers....this is my child's life...and MY life!!

On a happier note, my parents are here now to visit...Grammie and Paw!! Ethan could not be more thrilled!!  He has been grinning, ear to ear, since they walked in the door!  Elise is fascinated with them and is enjoying the extra loving. We all went out to eat tonight at Outback...we had steaks, and I enjoyed a glass of Merlot, which was wonderful!

Of course, if we're talking about wine, I must say I may or may not have enjoyed a glass of wine or so at home over the last couple of weeks.  Ahhhh....a nice bubble bath and a glass of wine is about the only "me time" I can get these days....and I'll TAKE it!!  But since I've decided that I'm due for some additional "me time" this week, I've scheduled a facial and pedicure at the Lavish Salon & Spa for Saturday. My mom will be partaking in the spa treatment as well. She deserves it....she's been "my rock" not only now but throughout my entire life.

Wine, bubble bath, spa treatments....just what this "Liver Mom" needs right now...the perfect package...  worthy of a bidding war, except I've already won. I've reserved these things--this special time- for myself...and that, my friends, is one of the best lessons I've learned throughout this experience thus far:  You must take time out for yourself.

SUPERCALIFRAGILISTICEXPIALODOCIOUS!!

SUPERCALIFRAGILISTICEXPIALIDOCIOUS!!!!  In the 1964 song from "Mary Poppins," this was suggested as  "something to say when you don't know what to say." It means great, fantastic, extremely cool. It can also be used as an exclamation, or as a way to describe something that surprises and delights you, similar to the words "stupendous" or "wonderful." I can't think of a better word to describe how I feel after finally receiving Elise's liver panel results from Monday. But just to be clear, he still has not called...no, I called the lab and obtained the lab results myself.  Anyway, her numbers are very good, relatively speaking of course, and all indications are that her liver is very happy!!

For anyone interested in the specific numbers, as I am, here is her current liver panel:

AST- 83   (normal range 20-60)  

ALT- 78   (normal range 6-50)  

ALK PHOS-  351   (normal range 110-320)  

GGT-  851   (normal range 10-160) 

ALBUMIN- 3.8   (normal range 2.8-5.0)  

BILI DIRECT - 1.2   (normal range <0.3)  

BILI INDIRECT- 0.6   (normal range  <1.0)  

As you can see by comparing her current numbers to the "normal range," Elise's liver enzymes are still technically high, BUT, they are generally trending in the right direction...DOWN. 

Anyway, I am so keenly aware of how much worse things could be for Elise and for us...so when I look at her, hold her, and witness her thriving like any other 3 month old baby, I can only praise God for this blessing...this miracle. 

Anyway, Elise just simply amazes me every single day. She's gaining weight, eating more than she has ever eaten, cooing, smiling, sitting up in her bumbo chair, and now....sleeping all night!!  Last night, she slept an entire 8 hours before waking up at 5:30 am to eat. She was even considerate enough to wake up at the same time as Daddy! 

Now that I'm actually able to sleep at night, it's like a whole new ball game! My thoughts are clearer, my mood is better, and I have so much more energy- energy that I need now more than ever, to advocate for Elise if nothing else. Each day, I choose my battles carefully. Most days, however, one of my battles involves our insurance company. I myself was a care advocate for this insurance company until just last month, and for the life of me, I can not understand what planet these people live on or where they left their brains. I sit here and basically read the criteria and approval guidelines to them, but usually to no avail. Although, this week, I did win the battle over the Synergis vaccine. 

So Grammie and Paw are going to be arriving tomorrow, and we can't wait!! They are SO good with Ethan, and I just can't wait for them to actually get to enjoy Elise this week. Prior to this visit, it seems like every time they have visited, Elise was in the hospital and very ill.  We are going to have a wonderful time together!! 

He didn't call...

No, sorry, I'm not talking about a secret boyfriend...this post isn't going to be THAT juicy...I'm talking about Elise's hepatologist (liver doctor). I literally waited all day by the phone for him to call with Elise's liver panel results from yesterday, and he hasn't called. The good news is that I'm sure he'll call tomorrow...the bad news is he didn't call TODAY, when he knows how anxious this makes me!!  It almost feels like a personal attack, but I know it's not. I do wish he would put himself in a parent's shoes for one second though before he walks out the door at 5pm without giving out all lab results. It might be "just another fax" to him, but it's MY BABY!!

My heart is heavy tonight for two other reasons as well. First, Liverland lost a little baby boy today named Cole. He passed away today due to complications of surgery. Although he did not have the same liver disease as Elise, it still makes me so sad knowing that another "liver mom" actually lost her baby.  It makes me hold Elise a little tighter and pray a little harder.  And then there's another a little baby girl, Loralei, who had her Kasai operation today, diagnosed with Biliary Atresia, and the parents were told after surgery that the Kasai would likely not be successful, and Loralei will likely need a liver transplant very, very soon.  For this beautiful baby girl and her family, all I can do is pray and have faith that she will be just fine, even if she does need a transplant a little sooner rather than later.

I am asking that anyone who reads this post please say an extra prayer for Loralei and her family, that God will restore her to health, and also for the precious soul of little Cole and peace for his family.

Okay, now for some good news...
Elise has completed her 21-day IV antibiotic therapy, and her PICC line was removed last night without any problem.  I brought her to her regular pediatrician's office today for a weight check and Synergis vaccine....and....she gained 8 oz since last Monday!!!!  That would be just about 1 oz/day, which is GREAT!!

Okay, I need to go...*hugs* from this liver mom....and here's to hoping he calls.

The WHAT dance??

LOL...It's kind of like the "touchdown dance" in football. We call this the "poop dance," and it is the way I react every time Elise has really dark colored stools! You see, dark colored stools are an indication that the Kasai operation is working, and bile is being effectively excreted from her liver. So this morning, my eyes were delighted when I opened her diaper...and I did the "poop dance" and took a picture too! I know how much our GI/liver doctor enjoys seeing Elise's poop picture scrapbook which I have on my iphone...so I'll save the pictures for him rather than posting them on here. You all can use your imagination!

Anyway, we had our last visit from the home health nurse today, and a liver panel was drawn this morning! We should have the results tomorrow, if the doctor is considerate enough to call me as soon as he receives the results. Elise is receiving her last doses of the IV antibiotic Meropenem today, and my husband should be removing her PICC tonight after work. SO glad to be done with the IV meds and the PICC.

So yesterday we brought Ethan and Elise to the Houston Zoo!  I guess we didn't have enough fun in the sun with the boardwalk. The zoo was nice, but honestly it was a let down when you compare it to the Audubon Zoo in New Orleans, the zoo I grew up visiting. Now I just want to pack up the kiddos and take them to Audubon Zoo. We will do that next time we visit home.

So today, Elise has been happy, cooing, sitting up in her bumbo chair, and eating...eating A LOT!!  The dietician considers 3 oz to be a "full feed," but Elise has been eating 3 1/2 and sometimes 4 oz over the last day or so!  I really, really hope this means that she's gaining weight!!  I might bring her in for a weight check tomorrow just to see.  We have our next appointment at Children's hospital next week.

OK, well that's all for now. I think I smell a diaper that needs to be changed...or maybe that's just the Pregestimil...lol!  Seriously, this formula really stinks. I can't wait until she Elise need it anymore!

This & That...& Sunshine!

Today was SUCH a wonderful day...right from the break of dawn, when I woke up to find that I was the only bidder for a case of 6 cans Pregestimil on Ebay last night...so I "won" the case for the starting bid price of $90!! That breaks down to $15 per can, which is just terrific...relatively speaking of course....since that's still about $1/ oz! 

After lunch, my husband and I took Ethan and Elise out to the Kemah Boardwalk for some fun and sunshine! I am SO glad we decided to do this, because it is exactly what all of us needed!  I rode the Carousel with Ethan, and then David took him on the train...and he just loved it so much! Elise actually stayed awake most of the time we were there, and I've never seen her look so calm. It was just wonderful to spend some quality family time together today, not thinking about meds, labs, hospitals, or illness. Things actually felt "normal" today. I got the distinct feeling that everything is going to be just fine. Here are some pictures from today's trip to the boardwalk...

Oh, and Elise's PICC line is holding on for the time being. It was not flushing at all for her mid-day round of the IV meds, and the meds would not flow, so my husband was planning on removing the PICC this evening....BUT, when we got home today from the boardwalk, I flushed it and even pulled back some blood, so we're going to try and keep it put for a little longer. It's scheduled to come out on 1/24/12, so we just need a couple of more days out of it.

OK, well, that was our day today, and it was a great one! 

The door bell just rang...

Of course the door bell just rang! It's another UPS delivery! When I'm not busy giving Elise her meds, feeding and/or  cuddling Elise, loving up on Elise's big brother Ethan or cleaning up and changing either of them, I am on the internet searching for and purchasing general baby essentials, and most importantly, Elise's medicine and/or vitamins and specialized formula at the best prices I can find...which is almost always MUCH less than I find in the retail stores. And it's not like I really have time to visit the retail stores anyway, so online shopping is my friend.

Today's deliveries so far include a case of formula, two bottles of Elise's multivitamin, and two bottles of Vitamin D drops. I ordered a case of 6 cans Pregestimil formula on E-bay from a vendor in Puerto Rico. Even with the cost of shipping, it comes out to a $10 savings PER CAN, for a total savings of $60!  The two bottles of AquADEKS multivitamin were purchased from Amazon for exactly $12 less per bottle than in the pharmacy. The two bottles of Vitamin D supplement drops are purchased from the company's website at a huge savings. The pharmacy was charging me $150 per bottle, and that just wasn't going to work.

Just yesterday the UPS man was here delivering a supply of Elise's IV medication, Meropenem, as well as a case of diapers for Elise and a case of much larger diapers for Elise's big brother, Ethan.  Considering the frequency of UPS deliveries, you would think our dog, Biggie, would save his breath....but no....every single time the doorbell rings, Biggie reacts like our house is under attack. The good news is we have a good "guard dog." The bad news is we often have babies suddenly woken from naps, which is never good.

Elise is doing quite well today. She has been tolerating her full feeds, which is about 3 oz per feeding, every 3-4 hours.  She is happy, cooing, and actually trying her best to roll over today!  Ethan, Elise's big brother, is trying his best to walk right now, which is equally as exciting!!

Thank you all for reading....and thank you all for the prayers and support.

Love,
Erin