Going... Going....

If all goes well, we'll wake up in 3 hours and be on our way. But the fat lady hasn't sung, so please keep Elizabeth in your prayers! This evening she was complaining of ear pain, and since she's had a virus for 4 days, and a low white blood cell count...my mom will take her to the pediatrician to check it out tomorrow and get antibiotics if necessary...We REALLY need things to settle down and stay mundane around here for a while. We'd appreciate your prayers to that end. We hope the next time you hear from us we'll be more rested, a bit tanner and back home safely from our trip.

Thanks for your prayers!

Love,

Sara & Matt

A tenatively green light...

Thank you for praying for us! Elizabeth's labs went pretty smoothly yesterday and we were able to talk through things with her GI this evening. The good news is, her labs haven't changed. Her results are still concerning, but she doesn't seem to be deteriorating. We'll have to give her iron to help treat her severe anemia and keep her a bit sequestered while her white blood cell count is so low, but my mom can do that in our absence, and we will schedule a follow-up liver biopsy, an endoscopy and an appointment to see hematology upon our return. Sooo baring anything unforeseen, we're planning on flying to the US Virgin Islands for 8 wonderful days beginning on Saturday!

 

We would really appreciate your prayers for our family for the next week and a half. Especially for:

~continued protection of Elizabeth's health.

~a wonderful time of bonding for My mom and the girls. We've never been away from Ruby even overnight.

~safety and a wonderful trip for Matt and I, and that Hurricane Bill (and any other hurricanes for that matter) would be a non-issue!

 

We'll let you know if our plans change at the last minute, but otherwise, we'll let you know when we're home safely and give you an update on Elizabeth's health. Here are a few pictures of the girls today...Elizabeth's discovered that graham crackers and nutella are a delicious afternoon snack. Ruby has discovered inner artist! As my friend Brenda says, "don't get angry, take a picture!"  

 

Love,

Sara

 

 

Elizabeth's Health and our Anniversary Trip

I'm shooting off a quick email to ask you to pray for Elizabeth this week. She hasn't been entirely herself since our wacky California Trip, and her recent hospitalization in July. We got her routine follow-up labs last week and the results were mixed, but altogether not great. Ultimately she's anemic (could she be bleeding from one of her varices?) and appears to be breaking down red blood cells (could she have muscle breakdown revealing some underlying condition we haven't found yet?), and we don't know why. Her liver is not functioning as well as we'd like, and our GI would like to do a liver biopsy to follow up on the ultrasound results that showed she had signs of cirrhosis. The biopsy is still scheduled for September, but in light of these most recent labs we're concerned that it might not be a good idea for Matt and I to leave on a long anticipated trip to celebrate our 10 years of marriage (and take a much needed break after an insanely busy 4 years!...okay, 8 years....who am I kidding??...10 years!).

My mom is coming out on Thursday to care for the girls while we're gone and we have great confidence in her, but we need to know if it's truly safe for us to be far from home right now. And let's face it, neither Matt nor I really wants to leave if Elizabeth's health is more marginal than typical. Would you pray for our family? We'd love Elizabeth to be healed, we'd love for the Dr.s to have clear answers about what's causing the symptoms and what can be done to treat them. We would love to be able to leave my mom with two healthy girls and go on our trip without any concerns. Ultimately, we need a clear and peaceful path. We know there is one because God has promised us one.

Ruby's busy day

Accessorize....check

Help mom install hubcaps...check

provide some soil testing...check

All in a day's work.

Summer Fun in the Water

Gardening

the smell of wet dirt
the joy of having 4 chubby little hands digging next to mine
picking tomatoes to eat like candy
making salsa from my own produce
tomatoes, cucumbers, basil, olive oil, balsamic vinegar...yum

having more than enough to share with neighbors
caring for my little plot of earth and watching it grow
planning for what we'll plant next!
I love it all...

Elizabeth's Home!

Thanks to her Daddy's persuasiveness we were allowed to bring Elizabeth home today, a full day earlier than we'd planned! She has been doing so well in the hospital and we were able to arrange for her to get a dose of antibiotics that will last for 24 hours just before leaving and then we'll get her final dose as a shot :( at her pediatrician's office tomorrow. She's thrilled, we're thrilled, and we all agreed that home is better than the hospital.

Here are a few pictures from today. Ruby's had quite a week and has been such a trooper while being shuttled between friends. We're so thankful for Halli and Kristen who stepped in to care for her. It madethis ordeal so much easier.

Elizabeth's first request upon entering our house? "Where are my quinceanera shoes?" She got all dressed up, took out every toy we have...

...and konked out on the basement floor.

Family Time

Today brought more time in the garden. Elizabeth has found a wooden
bird with flappable wings and gives him a tour of the garden
everytime we visit. She shows him where he can sleep, where to find
worms and kisses him goodbye. It's adoreable.

Elizabeth + Dora = BFF

So I had all sorts of ideals about how I was going to keep my kids from getting to attached to commercialized characters, and that was going really well until Elizabeth was about 9 months old and suddenly, out of nowhere, she knew who Elmo was, and well, the infatuation had begun. It didn't matter that she'd never seen sesame street or read a sesame street book nor did she own an Elmo ANYTHING....she saw him, she knew him and she loved him.

Well, Elmo is still her first love, but now Dora is her best friend.

And now that I'm living in a 20x10 room with her 24 hours a day, for 10 days, Dora has become MY best friend too. And just to make sure those ideals are dead where they fall, at least for now, Elizabeth's grandparents are feeding the habit. :)

We've gotten some wonderful treats from them over the past two days and it's saved our sanity.

We take Balloon Dora and our new Backpack out for walks & eat breakfast with her (Matt discovered that if Dora was sitting across from her encouraging her to eat, she'd gobble down meals like a champ!). We've decided that our Quinceanera shoes are for indoors only, but we spend hours taking out map and compass and the telescope to decide where to go, and how best to get there.

Let it be known, Elizabeth is feeling great and is so ready to go home. Everyone say a prayer for Monday!

Fresh Air!

No major developments today. Just more assurances that we're on a goodtrack, and that even if her white count and neutrophyl count don'timprove we can go home...since it's safer to be there than here ifshe's immunosuppressed! We can't wait until Monday...

The best news is, we finally got the green light to visit the rooftop garden on the 8th floor! It's gorgeous, even in the heat and we weren't disappointed. In fact, our nurse and the med student were soexcited to see Elizabeth go outside they asked if they could come too! We called Elizabeth our little Pied Piper. While looking at the fishing the wishing pond, a volunteer gave Elizabeth a coin and said, "makea wish!" So E dutifully dropped her coin in and then watched the fish swim around and finally said, "they're eating the wish!" Too cute.

Elizabeth loved the fresh air and her energy and stamina increases every day. It's too bad we have to stay here, because she's ready tohit the park! Daddy and Ruby came for dinner and again Ruby got tofeast on Elizabeth's leftovers...we called this her "fan a little harder, more grapes please" pose.

I can't wait for them to get to play together at home again.

ACE of EMGs

Lest it get lost in all the hubub surrounding Elizabeth, I couldn't let another day go by without announcing that my brilliant, hard working, sleep deprived husband has passed his EMG Board Exams with flying colors! We're thrilled of course (and not just because he can now collect his paycheck). Thanks so much for praying for us while he was studying his brains out. We're so proud of him.  

IVs, Adios Nephrology & More Big Girl Bed Fun

Today was a low key day. We're working on helping Elizabeth be less
afraid of the masks so she can venture out. Today she said, "I love
masks!" but wasn't about to put one on...baby steps.

Mid-morning, we got a visit from Nephrology (they were following us
because of the blood cells in her urine) and they've signed off on
her! They believe the "benign asymptomatic hematurea" is due to her
horseshoe kidney being fused at the top (less common than fused at the
bottom) resulting in a higher incidence of blood cells in the urine.
Since all her other test results look good, they've ruled out the
scary stuff and are confident that we've don't have to worry about it.
We'll take their word for it!

Sadly, we lost Elizabeth's IV today after 5 days of great use!
Elizabeth got about 30 minutes of freedom before the next one got
placed. Fortunately, the nurse was a pro had the new one in before
Elizabeth could say, "No thank you!" It's also more conveniently
placed in her right arm, which leaves her left arm (here's a shout out
to lefties) free for eating and coloring.

Finally, I've been covertly distracting her from the bed controls but
Elizabeth discovered the power of the buttons on the sides of her bed
and had lots of fun with those this evening.

All in all, it was a pretty uneventful day. Ruby continues to be
super flexible and is really happy with our friends who are graciously
watching her. We're thankful for the delicious meals (read:
non-cafeteria food) that our friends are supplying and though we're
tired of sleeping in separate buildings, Matt and I continue to feel
God's grace moment by moment.

Killin' Time

We thought it was appropriate to wear our Easter dress in honor of the
halfway mark in our stay! Today is Day 5 and then we only have 5 to
go!

The Queen of 8-East

Tonight's update will be short because we have a testy web connection here in the room and I have a little princess watching me like a hawk to see if I'm going to change my mind about bedtime and invite her to get up and play Dora. But it's 10:00 and I'm pooped, so to bed we go!

We're doing really well up here on 8 East. Elizabeth is settling in and today spent quite a bit of time on her feet coloring, playing board games with her little people. She loses so much strength when she's in the hospital so the more activity we can encourage the better. Even standing is great and tiaras are heavy so she logged a few hours today. There's nothing new to report except she seems to be feeling great and bouncing back quite nicely. The one outstanding issue is, she's got a half a dozen "funny" test results that have 6 different teams scratching their heads...Nephrology, Hematology, Infectious Disease, Immunology, Gastroenterology are all baffled by some recent findings and don't know what to make of them. They could be really serious or nothing at all. They'll draw more labs and consider further tests tomorrow, but
in the mean time, will you pray that each and every thing that is out of whack in that little body of hers will be made right? and soon?? We'd like to leave here on schedule please. We've got a zoo train to catch!

The pics above are of our day today. Ruby spent the day with a friend and then came up for dinner. Matt finally made a make-shift high chair for her so she'd at least sit still while eating Elizabeth's dinner. After dinner the girls dissolved into giggles while playing hide and seek in the curtains. Too cute.

Thanks so much for your prayers and emails and meals. We are shored up, and feeling encouraged and strengthened as we go to sleep tonight. To God be the Glory.

10 Days too long...

Today the decision was made that Elizabeth will stay in the hospital for an entire course of IV antibiotics. She can't be moved over to an oral medicine and she's not a good candidate for a PIC line since she's clotted off so many of her IVs in the past. That means we'll be in the hospital for 10 days as long as no other complications arise. Obviously we're really disappointed. Elizabeth is looking so good and every day in the hospital brings with it possibilities for complications. She's feeling better, but because of her low white blood cell count (neutropenia) she's on special precautions and can't go to the play room at all or even for a walk in the halls without a mask. The mask has not been a big hit with Elizabeth.

 

The great news is, we've got our own "positive pressure" room! (more air is pumped into the room and there are double sets of doors so that room air is swept out into the hall and no germs are sucked in when we open the door) It's such a blessing to be without a roommate and Matt and I are content so far to swap nights and go back and forth between being home with sleeping Ruby and being at the hospital with sleeping/beeping Elizabeth.

 

Would you pray for:

Wellness for Elizabeth

- NO positive cultures, fevers or other "sick" symptoms 

- a rise in her white blood cell count so when all's said and done THAT won't keep us in the hospital beyond the course of antibiotics

- clarity about a questionable finding on her abdominal ultrasound today,

 

protection of little and big hearts

-Ruby's being cared for intermittently by friends during the day and she's never spent so much time away from me. Pray for God to protect her heart and mind and help her feel safe and secure.

-Elizabeth is being poked, prodded, and otherwise having her personal space invaded so many times during the day. I need wisdom about how much to encourage her to endure and when to say NO MORE to well meaning doctors.

-Matt and I need refreshing, grace, fresh perspective and minds fixed on the Truth of God's goodness, faithfulness and sovereignty in the middle of really trying circumstances. We want to help create the girls' sense of well-being and need our own shored up in order to pass it on to them.

 

Finally, good restful sleep for all of us.

Thanks for standing in the gap for us. You're a lifeline.

 

For those of you who are local and who've asked how you can help:

-Meals are always appreciated, you can email me and I can let you know what we need specifically.

-Your emails of encouragement mean so much to us. Thank you for taking the time to tell us you're remembering us and praying.

 

Love,

the Harms

 

 

Haingin' in there at the Hospital

The last 36 hours have been good ones. Elizabeth is clearly improving on her IV antibiotics and is adjusting to the hospital routine (read: learning that any request for a Dairy Queen Oreo Blizzard or more Dora videos will be obliged). The team is still looking for a source for the bacteria in her bloodstream, so we've had an echo and an abdominal ultrasound, both of which were clear, so we might not ever find outwhere the strep pneumo came from. In the mean time, her white blood cell count is still dangerously low (she's basically immuno-suppressed) so she can't go home until we have a little clearer picture of why. We'll see the Infectious Disease team, Immunology and Hematology today, and hopefully they'll have some insight. There's a definite possibilty that if her white count improves, we could go home with a PIC line (a more stable IV that will allow us to give her the antibiotics sheneeds at home rather than the hospital) in a few days.

Because she came in over the weekend, we were able to spend a lot of family time at the hospital. This is the first time that Ruby's been sort of aware of what's going on and it's melted my heart to watch her jump right in and make the hospital room her own. She snuggles with Elizabeth on her "big girl bed", eats Elizabeth's food and steals her apple juice when she's not watching. It makes the hospital experience so much more "normal" and we're thankful for that.

Elizabeth and I will spend today reading stories, coloring, ordering room service and pretending to be Dora and her best friend Boots on a special adventure. Elizabeth remains the bravest little girl I know.

Our friends here are jumping in to help with meals and watching Ruby so we're being well taken care of. Thank you for your continued prayers. We're surviving because of them!

Please Pray for Elizabeth

To briefly catch you up, after 5 days of high fevers and only minor viral symptoms, Elizabeth's pediatrician wanted to get some labs to evaluate her. That first set of labs yesterday morning revealed some pretty significant neutropenia. That sent us back to the ER to get additional blood work and rule out a urinary tract infection yesterday evening.  After discovering blood in her urine (unexplainable and probably will result in a trip to Urology as an outpatient) they gave us a shot of antibiotics to start treating any possibility of a bloodstream infection and sent us home.

 

This morning, our Pediatrician's office called, and her blood cultures were positive for Strep, so they sent us to Children's Hospital to get admitted and receive IV antibiotics. Needless to say, it's been a busy few days and yet God's grace is apparent. We've noticed sweet gifts from God all throughout the last few days...making this a tad easier, lightening our load and encouraging us in spite of the yuckiness of it all. The best part is, Elizabeth has been a champ. She's is holding up emotionally and actually looking really good.  Please continue to pray for her little spirit. She was so brave yesterday, in fact, driving home from the hospital last night she said, "Mommy, The fear is going away! I was so brave!" Amen to that.  Additionally, despite having a low grade fever herself, Ruby's been really flexible.

 

It seems like in situations like these, we always find ourselves asking God for clarity...what exactly is the problem? what's the root cause? what's the best way to treat it and what do we do with all these other "incidental findings" that don't seem to be connected but need to be addressed as well?!? The Dr.s need wisdom for sure. Matt's staying with Elizabeth tonight and I'm at home with Ruby who has a low grade fever herself, but is hanging in there too! We'll head over to the hospital in the morning spend the day there tomorrow. We appreciate your prayers and support as we ride this out.

La Quinceañera de America!

This weekend we celebrated Independance Day at a local park with our dear friends the Oteros. We had front row seats and thanks to some fun glasses from Granna we had a wonderful time watching the show. We convinced Elizabeth to go by telling her it was a Quinceanera party for America (she's into Quinceanera Parties thanks to a Dora book she's been reading) and though she was stressed out at the first sound of fireworks, she calmed as I sang to her and snuggled her close and finally opened her eyes for the last 5 minutes or so. That was a big deal for her! Ruby loved the entire thing, lights and sounds and all and kept saying, "Happy Birthday America!"

As soon as it was over, Elizabeth sat bolt upright burst into tears and said, "I want to go home!.....that was so much fun!" She's an overcomer for sure. Happy 4th of July!

Elizabeth La Quinceañera

Elizabeth's current favorite book is "Daisy la Quinceañera" a book about how Dora the Explorer's goes to her cousin Daisy's 15th birthday party where they dance the Mambo. Elizabeth asked for a Quinceañera dress and Quinceañera shoes and a tiara. She spent all day yesterday beaming and dancing the mambo (so cute) and talking about going to her Fiesta de Quinceañera...I didn't have the heart to tell her that her next birthday would only be numero quatro.

Super Juice!

True to my health-foodie roots, I'm always on the hunt for ways to eat healthier and most recently to add more greens to our diet. We've landed on what we call Super Juice (aka: Green Smoothies) and after some strong reactions from Dr. hubby, I'm learning how to make them a tad sweeter. :) Ruby and Elizabeth LOVE them. Both will eat them from a spoon or slurp them down. When was the last time you ate kale, spinach, swiss chard and collard greens, and liked them? Anyhow, I'm sold and this morning had some fun letting Ruby help me make a batch. She loved eating the lemon and pretending the chard was a magic wand.