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!

Ruby Chats with Cookie Monster

Not to be outdone by her sister's vivacious personality, Ruby's got a few things to say too! I have a feeling I'm not going to get a word in edgewise pretty soon...

Dancing and Jumping

Watch out...Dancing With The Stars may be next!

Elizabeth's Health Update

This past Saturday we had an appointment with Elizabeth's Gastroenterologist. He's proposed doing a catheterization study, in order to see the exact scope (if possible) of Elizabeth's portal vein clot. This procedure would most likely involve an overnight stay in the hospital for Elizabeth, since she'd need to be on a breathing tube and the procedure would require threading an IV into her femoral artery and trying to reach the clot to deliver contrast. The bottom line is, Elizabeth seems stable on her medications and the next step is to see if we can once and for all fix the problem of her clot and her resulting verices by doing a Rex Shunt (yes...if this sounds familiar, we've been here before). The Rex Shunt requires that there be a portion of the portal vein above the clot to "hook into", so if the study shows that no such site is available, then we're back to square one: waiting for one of her verices to bleed and if one does, possibly listing her for a liver transplant.

After the cath study, she'll get another endoscopy to look at her verices. If, by a miracle, they are improved, then we may possibly be cleared to fly to California this spring...We're praying for that!

All in all we're doing well. We ventured out to church this past weekend...I spent most of the service in the foyer with Elizabeth, who isn't used to being quiet for more than 10 minutes at a time. If we keep her out of child-care for much longer, we're going to need to practice sitting still and being quiet a bit more before trying that again. :) We also made it outside for a few walks and Elizabeth got to practice her walking. Both girls are doing great. Elizabeth adores Ruby and kisses her every chance she gets. Ruby is cooing and smiling up a storm and we're getting into a grove here at home with the help of Ami, a gal we've hired to help me out a few hours every day during the week. She's been a godsend for me and Elizabeth just loves her.

Finally, one more piece of BIG news: Matt passed his board exams with flying colors! We are thanking God for getting us through that and now just have the hurdle of oral boards left. He's been officially offered the fellowship position for next year, so (Lord willing) we're for sure in St. Louis until June 2009.

Park Day

After being housebound for weeks now, Elizabeth finally got to play in the great outdoors this weekend. A warm spell...or more accurately, a "not freezing spell" made it possible for us to take not one but THREE walks. Our play time at the park was her favorite.

The Hazards of being a Pedestrian

This was Elizabeth as we gleefully departed on our Saturday walk.

 

This was her on our way back home.

 

What happened??

 

The sidewalk happened. She LOVES being mobile and just can't get enough foot action. She loves to march, stomp, "run" (aka: walk really fast) and "jump" (aka: squat and stand over and over, feet never leaving the ground). All of this is great physical therapy, but leads to LOTS of toppling over. She's a trooper though. If the damage is minimal, we say, "shake it off" and after a quick shaking of whatever apendage was hurt, she's off to trip over something else. We may need to buy a helmet if she doesn't pass through this phase quickly!

She's TWO!

Months, that is. At Ruby's two month checkup, it was unanimous: She's growing like a weed (12lbs 2oz, 22.5 in) and doing great! She hated getting her vaccines, but recovered beautifully. Now it's back to our daily routine of smiling, cooing, sleeping and pooping! Lots to do and so little time.