Ruby turns 6 Months

The Colorado Harms came to town

We were thrilled to host Matt's youngest brother and his wife this weekend. We had a great time showing them around town, despite the crazy thunder storms including tons of lightning and hail. We are SO thankful that they came to visit and can't wait to see them again soon. Phil and Darbi, we miss you already!

Good, Good Days

Sister Snuggle Time

Elizabeth helps Ruby with her "Tummy Time"

Row, Row, Row your boat

She's an Eating Machine!

Ruby loves the backyard swing

What a week we've had! For the past few days I've been singing that song from Fiddler on the Roof: "Wonder of Wonder, Miracle of Miracles" There's a line that goes:

And like He did so long ago in Jericho
God just made the wall fall down

That is the perfect summation of how we feel: The wall fell down this week. Elizabeth is eating. Really eating. Eating purees, tolerating textures that have given her trouble in the past, allowing me to feed her a variety of foods and is mostly okay with it! Talk about miracles...It feels like this is the one we've been praying for.

I had a dream last Tuesday. In it, Elizabeth took a bite from a sandwich and ate it. I was amazed and kept waiting for her to throw up or gag at least. Instead, she opened her mouth and showed me how she could move her tongue to push the food from side to side, chew and swallow....amazing. I woke up feeling so good. I didn't realize it was a shadow of things to come. Tuesday afternoon, our Occupational Therapist, Mary, pushed Elizabeth a bit during lunch, and got her to explore some textures, which she handled better than she had last week. This gave me encouragement to try a few new things with her later in the week. Then Thursday at a particularly stressful ENT appointment, Elizabeth's G-Tube came out...completely out of her belly. It's a long story, but I actually had the fleeting thought, (before I replaced it with a new one) "well, maybe she just needs to learn how to eat!" It's about time.

In the last two days, she's eaten 4 out of 6 meals ENTIRELY by mouth...pureed bananas, carrots, applesauce, sweet potatoes, oatmeal, yogurt, avocado...I keep waiting to wake up! Thank you to those of you who have been praying faithfully that she would learn to eat. We'll be on to chewing before long!

As a result of the good news from Elizabeth's endoscopy, we'll be heading out to California in July. We'll spend some much needed time with family, get a little rest, visit our beloved church, ALCF, and hopefully see many of you! We're still in the planning stages, but hope to have a day &/or evening when we can be in one spot so folks can drop by for a visit. If you're in town, we'll keep you posted!

In other news, Ruby's growing like a weed. She'll be 6 months old on Sunday! She weighs close to 19lbs, has two teeth and is LOVING solid foods. The girls are interacting more & more. Elizabeth is a great big sister and a super helper around the house.

While Matt's parents were here two weekends ago, we were teaching Ruby one of our favorite songs, "Running over". As a result, Elizabeth has been singing it at the top of her lungs for days now. It's such a good reminder.

Our cups are full and running over indeed.

First Foods

Clearly Ruby likes eating.

When I slowed down, she tried to eat her bib, the chair and finally decided to try to feed herself!

The Harms Girls' Lunch Date

I'll post a more thorough update soon, but for now, enjoy this video!

Grandma & Grandpa came for a visit!

Grandma & Grandpa Harms are here to visit for Mother's Day and we're having a grand time. Yesterday, a trip to the Missouri Botanical Gardens provided more fun and more photo ops. The matching sweaters were lovingly knit by Mary Hughey, the sweet Aunt of our honorary "Auntie Abby." Thanks Aunt Mary!

Cousin Camp

This week, we've been thrilled to host our nieces Eiley & Taliah for "Cousin Camp." My sister, Svea came along too :) ...and it's been quite a ride! Here are some pics from the first 5 days. I'll keep adding photos to this album for the rest of the week. We'll be so sad to see them go on Sunday. It's been a little slice of heaven.

Welcome Grayson Paul Harms!

After 9 long months of waiting (surely longer for Tia than for us) we have a nephew! He's a cutie pie and we can't wait to snuggle him. Congrats Dan and Tia!

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.