Family Photo Shoot

My dad brought his fancy camera when he and Granna came to visit so we took the oportunity to get some family photos at the beautiful Missouri Botanical Gardens. The tulips were in full bloom and I think we got a few (like a thousand) pictures for posterity. Thanks Papa!

 

 

 

 

Elizabeth's Endoscopy...good report!

We have wonderful news to report from Elizabeth's endoscopy today.  The procedure went well, and Elizabeth came through with flying colors. The varices, while still there, have shrunken by one grade.  They saw only one small "red spot" (a sign of potential future bleeding) where before there were three.  The three WashU experts who attended the procedure were delighted with the improvement, and feel like her current medication regimen must be working.  As Matt puts it, "We're not sure the medication is helping, but we're positive the prayers are.  We'll definitely keep taking the medications and we certaily won't stop praying!"  Best of all, the good report means Elizabeth won't need endoscopy for another 6 months.  For the time being, a liver transplant is, I think, officially off the table.

 

On the way home from the hospital, while the anesthesia was still wearing off, we stopped by our pediatrician's office for an ear check.  Elizabeth has been "ignoring us" for about a week, and almost completely deaf for several days.  The pediatrician confirmed double ear infections.  She's such a tough little girl that she hadn't even been acting sick or complaining of ear pain!  Pray that we've caught these infections in time and that the antibiotics will prevent any permanent hearing loss from occuring. 

 

Thank you for your thoughts & prayers. We all feel good about today.

 

Love,

Matt & Sara

 

This picture was taken at the St. Louis Zoo yesterday...

 

 

 

The fun doesn't end

We're having a glorious time...Elizabeth has eaten a Thin Mint (I guess everyone loves girlscout cookies), Ruby is trying her best to sit up and charm everyone within reach, and we're all soaking up the family time. Monday is the big day, so we'd appreciate your prayers for Elizabeth's endoscopy.

 

 

 

A New Approach to Feeding Therapy??

Elizabeth's Granna & Papa arrived on Wednesday, and life is GOOD. We're enjoying the spring like weather and lots of time outdoors. Granna has such a beautiful affect on Elizabeth, constantly encouraging her to try new things. It's amazing what she'll do at with a little encouragement from Granna. :)

 

Be Inspired.

This video was sent to us by a friend. It is worth the 13 minutes of time it takes to watch it. Be prepared to be inspired and encouraged. God has great plans for Elizabeth's life...and yours, and mine.

Back in the Saddle Again

After a 7-month hiatus, we're trying to start feeding Elizabeth by mouth again. With all her illnesses last fall, and the multiple hospitalizations, her oral feeding just stopped and we've been waiting to move forward again until she was stable. (read: not throwing up, in the hospital or suffering from severe diarrhea) Winter seems to be officially over here in St. Louis and we are hoping it takes the cold season with it. Elizabeth has regressed quite a bit in her chewing and tolerance of textures, but has matured quite a bit and seems let adverse to some flavors. She asks for a "bite" of anything resembling pizza and will tolerate some small tastes of yogurt.

 

I frequently get asked if we can just start her off like a baby again and reintroduce everything...the answer: unfortunately it's not quite that simple. We'll start there, but she has a history of throwing up when anything stays on her tongue, (something a healthy baby doesn't necessarily come with) so we have to retrain her to not gag and desensitize her to the textures on her tongue. I did it last spring, but it was my full time job...no less than 8 hours a day spent making food, helping her eat it, cleaning her up after a vomit and re-feeding her via g-tube everything she either lost or didn't get in the first place. With a 2nd child, I simply cannot do that this time around.

 

The good news is, we've had some success at self feeding, so hopefully the excitement of doing it herself will motivate her to try more...that has yet to pan out, but it's definitely not hindering her eating.

 

I'd appreciate your prayers for:

*Wisdom about how & how quickly to progress. I tend to want to push her and make daily progress...one more cc today than yesterday, etc. But she's got her endoscopy scheduled for April 21, and depending on what we see (still praying for a miracle!) this may or may not be a great time to make significant changes in her diet (she's on 100% Peptamen Jr. ~ 40oz/day). If we add food, then we have to start counting calories...and so far, we've really struggled to get all 1200 calories (what she needs to grow) into her just by feeding her food.

 

*Courage and encouragement for me (Sara) to tackle this again. Honestly, I'm dreading it and if I had an extra $10,000 lying around, I'd gladly pay for the feeding folks in SF to come work with her. I feel quite overwhelmed at all that she has to learn in order to first eat, then eat enough in order to get rid of her g-tube.

 

*Healing for our Eliza-bug!

 

Here's a little video of us getting started

Ruby turns 4 months old

In honor of Ruby's 4 month birthday, here's a little quiz. Some have accused me of doctoring the photos. I'll let you guess for yourself...who's who?

Elizabeth Update

Yesterday, on the first day of spring, we celebrated with a trip to the park. The park is where, as Matt puts it, "The borders of Holland and Italy get really close to one another." (we know of course the two can't be neighbors...but if you're familiar with our trip to Holland metaphor then you know where I'm going with this (if not, you'll find a link to the poem to the right)) At the park, Elizabeth is so full of life and joy and delight. She plays on the swing, navigates the wood-chip terrain and climbs around the play structure with excitement and a distinct lack of fear. She is absolutely thrilled to be at the park. When we're at the park, it's easy to forget about her clot, her g-tube feeds, her muscle weakness and fears about her future. I love going to the park..Peeking over the fence at Italy, enjoying some good pasta and yummy wine, (Okay, Matt enjoys the wine, but you get my drift)...Feeling normal.

 

And while so many things are going well with Elizabeth--she's growing, she's getting stronger and more steady on her feet, she's learning signs and songs and parroting everything we say, she's throwing up only infrequently now, and since her hospitalization in late February, has remained "bug free"--I was reminded during a recent conversation with Matt, the future isn't perfectly clear for Elizabeth.

 

Rather than spell out all the possible challenges she faces, we'll just give you the bottom line.

 

Elizabeth needs a major miracle.

 

She can't live for long without healthy collaterals (blood vessels) to divert blood flow around her clot. She doesn't seem like a good candidate for a shunt procedure, and thus we're looking at a transplant. I'd been living in a bit of "la la land", comforting myself that if nothing got worse we might avoid a transplant. But the reality is, if things don't change, a liver transplant IS the outcome. If she gets worse, we just move things up. And while a transplant is a good way to save her life, it doesn't give her the life we want for her. A transplant means she'd have to live on immunosuppressants to keep her body from rejecting the liver. (Think HIV treatment) Immunosuppressants would mean she'd be much more at risk for little bugs causing major problems (as if we haven't seen enough of that with her already!) Any fever would mean a hospital admission for IV antibiotics...

 

So we need a miracle. The clot is completely scarred over, there's no chance of it breaking up...unless God plows through it. We have an endoscopy scheduled for April 21, so we'll get to take a look at her collateral veins. All the outward signs show that they are still under tremendous pressure, and the primary treatment for leaky or bursting collateral veins is to cauterize them...which just puts the rest of the veins under more pressure.

 

Would you join us in praying for a miracle? A parting of the red sea, raising Lazarus from the dead, feeding the 5000 kind of miracle?Underneath that delightfully sunny disposition, is a body that is broken and severely in need of repair. The same God who raised Jesus from the dead and gave us hope of eternal LIFE can heal Elizabeth. We'll just keep asking.

 

Happy Easter. He is Risen! He is risen indeed.

"Oh How We Love You Little Ruby Christine"

You'd think that since I'm the resident Singer/songwriter in the fam, any lasting musical tributes would be composed by yours truly. But, no. Daddy has become the lyricist and the girls LOVE his songs. This one was a joint effort, sung beautifully by our little Elizabug. Oh how I love these girls. Here are the lyrics, sung to the tune of "Music Machine" (a record we grew up listening to). "Ruby Christine, Ruby Christine, you're one of the cutest babies I've ever seen. You've captured my heart, and made it to sing, Oh how I love you little Ruby Christine."

Sunshine indoors

It's rainy outside, but the sun is shining in our home today!

Spring is springing??

We started the week with snow covering the ground, and by Friday, it was warm enough for a jacket-less trip to the park. Since it's our first experience of the changing seasons in the midwest, I won't declare it's spring yet...but I think it's on its way! Here are a few pictures of our full days.

Mar 7-14

Grandma & Grandpa Harms came to town

We were so blessed that for Valentine's Day Grandma and Grandpa Harms gave each other a trip to St. Louis at the beginning of March. What a treat! They came for a long weekend....the warmest long weekend we've had this winter. Of course the day they left a storm came in and within 24 hours we had 10 inches of snow! A day late for my taste. We would have loved to have them stuck here with us for a few extra days.

Elizabth had a ball and Ruby couldn't get enough of the attention. They were in constant entertainment mode! Singing, dancing, playing & snuggling. Matt and I got to go on a date on Saturday afternoon too, so I think the weekend was a success all around. We can't wait until the next visit.

We're Home!

The girls are tucked in bed, and Elizabeth's only a few ounces lighter than when she last slept at home. We're back on continuous feeds, but she tolerated her full-strength formula today, so we're hopeful that we'll move to boluses within the next week. Grandma and Grandpa Harms arrive late tomorrow night, so she'll be in for a super surprise when she wakes on Friday. Thank you all for your prayers and encouraging emails. We read every one and they really lift our spirits! Thanks also for those who brought yummy meals. We're so happy to all be sleeping under the same roof again. God is so good. Sweet dreams everyone!

Discharge on the horizon??

Maybe today...She's mostly held down 3/4 strength formula, so that's promising. We'll keep you posted!

Hanging in there in the hospital

Elizabeth is doing okay today. She hasn't had a fever in 18 hours, so
that means hopefully the antibiotic is finally making some headway.
We've switched to a "safer" one and if she improves, we can change to
an oral version for going home. The glitch is, she's been unable to
tolerate ANY food since Saturday. She's getting pedialyte through her
g-tube around the clock, but has to be able to take nutrition before
we can go home. Please pray that she'll start to keep down some food
soon! Daddy's doing an amazing job. He hasn't left the hospital since
Saturday. Ruby and I have been able to spend the afternoon and early
evening there for the past two days and we'll go again today. There's
nowhere else I want to be than with BOTH my girls and Matt. Grandma
and Grandpa Harms arrive for a pre-planned trip on Thursday night.
We're so excited to see them and are praying we'll be home from the
hostpial by then...

Three Months and counting...

Ruby turned 3 months old yesterday. She's growing like a weed...or
should I say, a pillsbury dough baby...we LOVE it. She's talking quite
a bit. Lots of coos and gurgles. She's starting to sit up a bit in her
Bumbo chair (thanks Jenny!) and still loves matching with her sister.
:) She's given me a few nights of 8 hour stretches, and we're hoping
this is a trend! We are so thankful for her sweet little spirit. She
is truly a delight.

Elizabeth Update

I was hoping to have some difinitive news for you, but as it often goes, we haven't made much progress. We do know that she has Ecoli in her urine (thus the UTI), but it's not responding to one of the antibiotics she's on, and the other is one that is so heavy duty (and can cause hearing loss) it's not healthy to be on it for extended periods of time. As a result, they're still working to find an antibiotic that ecoli will respond to. In the mean time, she's throwing up most of what we're feeding her through her tube, and continues to spike fevers, so we know we don't have a good handle on her treatment yet. She got an ultrasound of her kidney this morning, but we haven't heard back yet.

 

The good news is, Matt is super-dad.  He's been totally available to stay with her at the hospital and is still managing her care beautifully, while running on only a few hours of sleep and few breaks. His constant presence there has made it much easier for me to be away with Ruby. We'll head up there in an hour so so, and spend the afternoon as a family. Ruby's been quite flexible and we're so grateful for the friends who've offered to watch her, and brought us groceries, and meals. We're frustrated that Elizabeth is in the hosptial and eager to get her well, but in the mean time, God is giving us supernatural grace to juggle this crazy life of ours.

 

Thanks for your continued prayers and support! Love, Sara

Bump in the road

Last night Elizabeth spiked a fever here at home and after waiting to see what developed, Matt took her to the pediatrician this morning. Our suspicions were confirmed when he sent us to the ER and she tested positive for a Urinary Tract Infection. Generally though, UTI's don't give a person a temperature of 104, so they're concerned that the infection has gotten into her kidneys or her blood. Since she only has one (horseshoe) kidney, we've got to be good to it! They've started her on IV antibiotics and are admitting her. We're hoping that this will just be a straightforward UTI and her blood cultures and ultrasound will come back clean. In that case, we could be home on Monday. BUT as we've experienced in the past...we never know. SO....I'm writing to ask you to pray for our family.

~Quick healing for Elizabeth & protection from the psychological stress of another hospitalization. Unfortunately, the hospital is practically full, so instead of our usual admission to 8 West, we're going to the 10th floor, and there we'll have new nurses & new staff, so we'd appreciate prayers for favor in our "new" digs.
~Grace and strength for Matt who will be doing this solo whenever I'm home with Ruby; for me (Sara) as I'm not able to be in two places at once; for Ruby, to be flexible as we haul her back and forth and require her to adjust her normal routine.
~A straightforward diagnosis and easy treatment so she can come home soon
~REST for all of us.

Happy Valentine's Day!

Jesus loves ME...and YOU!