No more button for Eliza-button!

Drum roll please.....We took out Elizabeth's G-tube tonight! I can't explain all the conflicting feelings in my heart. I'm SO thankful that we had the g-tube to help keep Elizabeth alive so many times when she was so sick, to help her grow when she didn't know how to drink or eat. While at first I definitely had a love/hate relationship with the "button", and all I could think of was trying to wean her so we could take it out, in the past year and a half I'd made peace with it, and was in fact, thankful for the flexibility it provided us as we tried to teach Elizabug to eat.

After talking it over with her GI, we agreed that now that she's solidly eating by mouth (still learning to chew but making steady progress), she's proven that she can eat enough to keep from loosing weight and she's stayed out of the hospital and eating by mouth despite some gnarly colds this winter. Suddenly, removing the tube became realistic. So we did it! Ironically, I shed a few tears...it's been quite a run for the little button, but otherwise it was pretty anticlimactic in light of how much her eating and tube feeding has dominated our lives for the last 3 1/3 years.

We're praising God that tonight, Elizabeth is tube free, eating and drinking by mouth and sleeping soundly at home. The next step is finding homes for all the tubing and syringes we've got in our basement...It feels good to finally be able to say, "we don't need it!" Here are some before and after pictures.

Happy Valentine's Day!

Sisters, Sisters,
There were never such devoted sisters.
Never had to have a chaperone, no sir!
I'm there to keep my eye on her.

Princess Parties, Pit Bulls & Playgrounds, Oh My!

February is the month for hearts and tutus and princess parties! It's months like these when I'm really glad I have girls. All my dress up dreams come true and we can wear tights and "panty shoes" (fancy shoes) and crowns any time we want. There are 5 families in our little group of friends. The gals meet for bible study, the men meet for bible study, the families do breakfast together once a month and the kids (10 under age 4) just have a ball together. Emily (in the pink dress) threw a "Kingdom of Love" party and we all (I do mean all) dressed up as princesses and knights. Elizabeth was looking forward to going since I told her about it. Every day she asked to "go to the Valentines Party and wear a princess dress and a crown". We did a dry run over the weekend and let them play in some dress up clothes our OT brought over when she heard we were going to this party. Ruby can say "tutu" now and when she puts one on, we think she looks like one of the hippos doing ballet from fantasia...he he he. I just think a tutu makes household chores so much more fun!

After our princess Party, I had put the girls down for their quiet times and gone back to the car to finish unloading when I heard a woman screaming for help in the alley behind our house. She was being attacked by pit bulls that had escaped their yards to attack her dog! I called 911, and after another neighbor got the dogs to retreat, stayed with her until the police & EMTs came.

When the girls woke up from their quiet times, we went to the park. At the end of our time there, Elizabeth fell about 2 feet to the ground off of a cement structure and landed on her back in the wood chips. She seemed okay and after a few tears played for a bit longer before heading for the car. On our way there, she seemed dizzy, and lethargic and as soon as I buckled her in, she got white as a sheet, started babbling a bit and falling asleep! My first thought was that she'd ruptured her XL spleen and after running it by Matt, we decided to be safe and head for the ER at Children's. Fortunately, after the work-up in the ER proved she was okay, she began to perk up a bit and we were discharged in just under 2 hours. We stopped by the cafeteria for ice cream and headed home where we crashed from all the adrenaline from the day! See what happens when we leave our house??

Stanley the Snowman

I'm a California Girl at heart. I could do without winter, cold floors, hands cracking from all the dry heated air and icy streets, but I LOVE SNOW! A week or so after our first snow we got a major storm that gave us something to get excited about. Daddy helped the girls build Stanley the Snowman, ("Daddy!" she said, after kissing him, "Stanly tastes like water!") and Ruby helped herself to a snack. She's pretty much always trolling for food. It was a great family weekend.

Call Me Ruby Bon Jovi

SNOW!

We finally have some snow that's sticking to the ground! It started to snow while we were driving to church and really came down during the service. We emerged to a winter scene, complete with snow falling hard to quickly cover any tire marks or footprints. It's fun to finally feel like there's a payoff for all this cold weather. :)

We bundled the girls up when we got home and had some fun running and playing in the backyard. Ruby decided she liked snow once I showed her she could eat it, and Elizabeth was brave and decided to make her first snow angel! Dad did some asthetic touchups before I could take the picture, so what you're seeing has been given some attention with a broom. :) He WAS sweeping the sidewalk for us though, so I guess Ican't complain!

We also built a tiny snowman, difficult to do since it was so dry, but we managed and the girls had a great time.

Celebrating Life

A few years ago, we were asked to share our journey with Elizabeth for a video project. It was a powerful experience for both of us. I've attached the link to the video below.

Miracle Babies Video

A Good Day

We're home from the hospital and thankful for a very smooth, peaceful day. Elizabeth was a champ and came through the procedures beautifully. They found 3 more "cherry red spots" (spots that are at high risk of bleeding) and out of the 5 varices she has running down her esophagus, they sclarosed 3 of them. We'll need to go back for another endoscopy on March 2. We'll be on this schedule of looking every 4-6 weeks until they get the upper hand and the body creates different collateral veins that are more stable, or in the case that she has a major bleed and we need to evaluate other treatment options. (liver transplant) Given the options, we'll take the first.

 

Since they had to inject the varices, she was at higher risk of bleeding, so they kept her for observation until 4 this afternoon. I was able to drop Ruby off at our friend Kristin's home and she had a marvelous time playing with her friend Sophie. The afternoon in the hospital was absolutely peaceful (despite the fact that it was FREEZING outside (5 degrees when we were driving to the hospital!). Matt was able to return to work and Elizabeth watched all the Sesame Street and Signing Times she could get her hands on, ate right off the hospital menu (a first for her!!) and was her delightful self (as we were leaving, she turned to our nurse and said, "Thank you for Lunch!") We saw many of our nurse friends and they marveled at how big and smart Elizabeth has gotten over the last year.

 

When we got home, Matt had to run back to work, so I set the girls up on the couch with an animal video and set to making dinner. When the video stopped, Elizabeth hopped off the couch and announced, "I had a great day!" Amazingly, it's true. Despite the pain of getting the IV, the discomfort of not being able to eat or drink until 1pm, and the stress of another hospital visit, our Peanut was thankful for Dairy Queen ice cream, her favorite videos, a morning with her daddy and oatmeal for dinner. All of our prayers were answered and I for one am amazed at how kind God is to give us such grace for what could have been a really stressful day. (Thank you again Kristen and Sophia) 

 

These days, we are certainly learning a lot about what a "good day" really looks like.

 

 

Elizabeth's Proceedure Tomorrow

We'd appreciate your prayers for Elizabeth tomorrow as she is sedated for her endoscopy. We were also able to arrange to have her tubes placed in her ears while she's in the OR, so she'll be spared an additional sedation/intubation and hospital experience. We'll be taking Ruby with us and all need to be at the hospital at 7:00am. If all goes well, we should be home by late afternoon.

 

Would you pray...

~for Elizabeth to come through the proceedure with flying colors,

~that God would give the surgeons discernment and wisdom about how aggressive to be in sclarosing the varices.

~for no complications!

~for Ruby to be flexible

~Anything else that comes to mind!

 

We are so thankful for all your support and prayers. We'll let you know how things go!

 

Post-Christmas Update

We are so thankful that we got to spend almost two whole weeks with family in California. Elizabeth and Ruby got to see aunts and uncles and cousins galore and we enjoyed the few moments we had to put our feet up while the Grandparents loved on the girls. While the trip couldn't technically be called "restful", it did allow us to spend time with the Harms Family in advance of Matt's dad's surgery to remove the kidney cancer which had invited itself into his pancreas. Since Matt had to cancel his plans to attend his dad's first surgery during the Fall of 2007 due to Elizabeth's hospitalization, we were especially grateful to share these moments with the family this time around.  

 

Matt stayed in the Bay Area for the surgery while I took the girls to Clovis for a few days with my family.  Sadly, shortly after arriving in California, both girls got colds, and a week later Elizabeth's had turned into a bacterial infection in her ears. After flushing out her ears, a bunch of days of fevers, improving then worsening symptoms and consults with a pediatrician friend, we finally got antibiotics the day before we flew home. I, for one, am ready to take a trip that doesn't include any emergency trips to the doctor! The trip home was equally eventful, and needless to say, while we're so sad to say goodbye to family, we're glad to be home. 

 

The day before Dad's surgery, we finally were able to meet with the "feeding therapy guru" as I like to call her. Despite E's fevers and overall misery, we actually had a great session and she was able to get a clear picture of Elizabeth's abilities and limitations. We got some feedback and tools that should either prepare us for an intensive session later in the spring when we get called up from the waiting list, or will allow me to help Elizabeth make the progress she needs here at home without the intensive sessions. We're now waiting for E to get well so we can get this party started!

 

On Monday we'll meet with Elizabeth's ENT to discuss putting tubes in her ears to help us avoid more infections and hearing loss, and on Thursday she has another upper endoscopy to check the status of the varices we recently sclerosed. We've got a lot going on and would appreciate your prayers for our health. It's apparent that even a simple cold can throw Elizabeth off track for a while physically, create bigger problems in her little body and often results in a regression of the skills that were so hard earned.  But it's cold season and I can only quarantine us so much!

 

In Ruby news, she'll be 14 months old next week and is eager to do everything Elizabeth does. Her favorite words are, "YEAH!" in response to anything that sounds like a question, and "no-no"...which she says while holding a hair-clip or patting her head where the said hair clip should be...I guess we tell her not to take out her bows a lot.  Now that she's walking everywhere, she's eager to start running! She can't quite pick up her feet that fast, but her attempts are too cute. Oh, and when she hears any kind of music, she bobs her head, shakes her bum and throws her hands in the air....The girls keep me on my toes and thankful for naps and quiet times. :)

 

Merry Christmas

It's beginning to feel a lot like Christmas

If I had a dollar for every time I've said, "what a difference a year makes", I'd be rich! Last year I was still recovering from my c-section from having Ruby, we were majorly sleep deprived, Elizabeth had an undiagnosed ear infection and both girls had colds. This Advent, dispite many colds, the season has been truly meaningful, filled with anticipation, wonder and excitement. Elizabeth finally "gets" holidays, and though she still regularly says "Happy Birthday Thanksgiving!" we're definitely moving on and have many conversations about the meaning of Christmas every day. Daddy told her the Christmas story using the characters from her new Playmobil nativitiy set and she plays with it every day.

 

 

Her current favorite person in the story is Mary, who has a ponytail, so Elizabeth wants a ponytail. The shepard has a staff, so Elizabeth spends some time everyday walking around the house with a broom as her staff. She does remember an amazing amount of detail about the story though, and I'm humbled by how much she absorbs and how much we are writing on her heart already.

We picked out a beautiful chistmas tree and both both girls love seeing the lights.

 

 

Since Elizabeth's health is so stable, we are thrilled that we get to fly to California for the holidays. We'll be with ALL the Harms family for Christmas and some of the Peterson clan for New Year's so we are counting the days until we get on the plane!

Happy 1st Birthday Ruby!

From the moment of your birth you have been a gift of grace to our family. You are full of life and laughter and snuggles and spark. We are so glad God chose to share you with us! We love you little Ruby Christine.
Love,
Mommy, Daddy
& Elizabeth Joy

Successful Endoscopy

We're home and Elizabeth has shaken off the anesthesia and just ate a good lunch of her favorite oatmeal. We're so pleased that the endoscopy went smoothly. Here are the facts:

 

*Dr. Sheppard, (not McDreamy) ;) who has been our liver surgeon all along happened to be visiting from Australia, so he was available for her procedure today. That meant he was able to compare the condition of the varices from first-hand experience.

*Based on what he saw, He decided to sclerose (cauterize) 2 collateral veins that had "cherry red spots" indicating a high risk of an impending bleed.

*Elizabeth didn't have any problem with the anesthesia and quickly started eating and drinking after she woke up

*Because of our history with Dr. Sheppard, he was able to talk through her current labs and answer ALL of our concerns about her current labs and strange behavior. He gave us a clear explanation for her high ammonia levels (her portal hypertension is to blame, NOT hepatic encephalopathy) and was able to put us at ease about the recurrence of her funny symptoms and the long term outcomes. The bottom line is, we can expect her ammonia to spike every time she gets even minimally sick, and the increase in her ammonia will cause her to act drunk, lethargic and off-balance, but it should go away within hours. That's good news! He sat and talked with us for over an hour and we are so thankful for all of his input from years of experience.

*Through it all, we've once again seen Elizabeth's courage and bravery in the face of pain and fear. She is so strong, and such an overcomer. I want to be like her when I grow up!

 

Thanks for your prayers and encouraging emails. We're home and happy and have lots to be thankful for.

Endoscopy tomorrow

We're taking Elizabeth in for a regularly scheduled endoscopy tomorrow
morning to check out her varices. (to review, last winter they were the
most severe, Grade 4, then this summer they'd improved to Grade 3) We
had an ultrasound on Tuesday that went off without a hitch. Everything
appears to be stable and when we had to get a blood draw afterward,

she was a champ. Even though she handn't eaten in 16 hours, she was calm

and didn't cry for one single minute! She actually told the
phlebotomist which arm to stick, counted down and then asked for a
bandaid and a sucker...next she'll want a bike and a kitty! :)
Afterwards, we went to the hospital cafeteria for an "ice cream with
Daddy date." It's our new ritual and I believe it kept her from
totally freaking out the whole morning...she was so focused on the
prize.

Unfortunately, she's been acting a little strange. That, coupled with
some abnormal lab results, has us concerned. We're in conference with
the on-call Gastrointerologist and really need wisdom and discernment
about what to do. We've almost made it through the entire fall without
a hospitalization...only a few weeks left. We'd really like to stay
home with a healthy Elizabeth tonight.

We'll keep you posted.

Here's a photo of Elizabeth celebrating Dora the Explorer's 3rd Birthday.

"Squirrel-Proof"