Double the fun!

We've been at home for 4 days now and Elizabeth seems to be slowly getting her strength back. She's still not fully recovered, but tomorrow at 6:30am, we'll show up at the hospital for an endoscopy to see how her the varicose veins in her esophogus are doing. This time though, we'll also be bringing Hannah Mae, who will ALSO be getting an endoscopy as a result of her severe reflux, sliding hiatal hernia and persistant blood in her vomits. Yuck! Thank God my mom is in town and can keep Ruby so both matt and I can be at our girls' bedsides. It's a little weird to be taking them both in, but we're so thankful that we were able to coordinate things so they could be done back to back! Elizabeth will certainly help her little sister to be brave. As always, we'd really appreciate your prayers for safety. We're old hat at Elizabeth getting intubated to undergo the procedure, but putting Hannah through all those pokes, and a sedated procedure reminds us that there truly are risks and we need God's protection for both our little angels. Thanks in advance! We'll let you know how it goes.

home

In a whirlwind morning we were discharged 8 hours earlier than expected and now we're home! I'll give a more thorough update later. Thanks so much for your prayers!

Another Busy Day

Between exploring the rooftop garden and the playroom, Elizabeth got lots of exercise today and had plenty of fun. Add learning new signs from her Signing Times Birthday DVD, painting a princess picture and taking a bath to that list and it was a full day. And this came after a busy night!

She lost her IV in the wee hours of the morning, (it came out and leaked into her bed) so after a bed/wardrobe change at 5am, she got poked 4 times before they finally got her new IV in! Fortunately, Grandma is a good stand-in for Mommy in the comfort department, and Elizabeth was strong and brave and quickly fell back to sleep. Please join us in praying that this IV stays in until discharge!

Grandma flies back to California tomorrow and then Granna arrives on Wednesday evening, hopefully just after we get discharged! I think we can see the light at the end of the tunnel! Goodnight!

~Sara

Pizza Party on 12!

We ordered in pizza...can you believe in all our stays at the hospital we've never ordered in pizza? Clearly, the girls loved it and Mom & Dad enjoyed the easy cleanup!

Five days down

Today was a great day. Elizabeth had a great night and is finally starting to get some sleep. We had a family morning in her room and got to play Candyland together for a bit. (By "play" I mean, Elizabeth holding all the little men and Ruby holding all the cards and Grandma and Daddy or mommy trying to "encourage" them to figure out whose turn was next) Then we had a mommy-daughter day and I got to take a long walk with Elizabeth to the playroom and the outdoor garden. I didn't have my camera, so here are a few pics from my phone. Her birthday present from Children's Hospital was a "Dancing Singing June Doll" and she loved taking her vitals, carrying her around everywhere and introducing her to anyone who happened to cross her path, saying "What's your name? This is June!" 

Unfortunately, this afternoon I caught her IV infiltrating (leaking out of the vein into the surrounding tissue, causing her elbow to swell) so we had to take out her IV, but the upside to that was we had 3 wonderful hours free of her IV pole and she was amazingly calm when they placed the new one in the same spot on the other arm. We finished the day with a pizza party (I'll post those pics on our blog) and now everyone is tucked in for the night.

We're continuing to experience God's mercies and so appreciate your prayers.

Please continue to pray for:
~Elizabeth to remain fever-free (and our whole family to remain healthy) so she can return home as soon as possible.
~Matt's patient load to continue to be light, so he can complete his work and remain available if Elizabeth needs him
~Ruby & Hannah to be flexible with the daily changes in schedule and caregivers
~Great rest for all of us!

No News is Good News

Grandma is sleeping at the hospital with Elizabug tonight giving Matt and I some time with the little girls and a chance to get a good night's sleep. We got a standing order for benadryl to hopefully help with her "itchies" which we think is just her system being overloaded and we're hopeful it might aid in helping her sleep better too! Thanks for your continued prayers. Goodnight!

A Plan!

I just got off the phone with Matt and the team agrees that we should tentatively plan for a 7 day course of IV antibiotics, so that puts us at a Wednesday afternoon discharge...Yay for a tentative plan!!

Elizabeth on the mend...but still not sleeping well!

Today was a hectic but GOOD day. Elizabeth tried to make up for her late night by sleeping in-between interruptions (vital checks every 4 hours, IV antibiotics 2 or 3 times, blood draw at 6am) until 8:30 this morning. Her appetite is slowly coming back and she's getting stronger and steadier on her feet. She's gone for 36 hours without a fever so we think we've gotten the upper hand on whatever was ailing her and now we just need to make some decisions about how long she needs to be treated with IV antibiotics in light of the fact that her cultures haven't grown anything. No one seems confident that we should stop treatment and go home, but we'll see how things go over the weekend. At this point, we're bracing ourselves for the full 10-day course of antibiotics and we'll be delighted if we get surprised with an early discharge.

Grandma arrived and immediately her presence was a blessing since the little girls got some TLC and good naps at home and thanks to a sweet visit from our friend & babysitter, I got to go home and take a quick nap! I'm home tonight with Grandma and the girls to get some much needed sleep and Matt's at the hospital with Elizabeth. She's still awake and tossing and turning...pray for her little body and mind to rest!

Thank you for your prayers, your encouraging emails, phone calls and meals! We feel loved on every side and it's remarkable to once again be faced with such a complicated crisis and honestly feel like we're doing well! Matt continues to be able to work because by the grace of God he only has a few patients on service. This RARELY happens for him. Usually when he goes on service he has "the most patients they've had in a month" or some other craziness. But after hearing how things went today I was remembering 4 years ago when we were admitted to UCSF for  one of Elizabeth's long stays and Matt was able to continue his residency program AND be fully present in the hospital with us because he had 1 patient on the wards the entire month! That was unheard of. But it was a beautiful picture then and now of how many times God hasn't taken us away from the crisis but has made a path (think red sea) through seemingly impossible circumstances. Personally, I think He's enjoying showing off for us. :) He's good. Thanks for being part of His goodness to us.

A dozen times a day I log a little tid-bit that I want to pass along to encourage you how well God is taking care of us in answer to your prayers. I would love more time to write eloquently of his faithfulness, describe the nuances of his kindnesses to us. But tonight, I only have energy for a list:

~Our sweet nurse "doesn't believe in waking sleeping children"...so Elizabeth got much needed rest.
~A sweet friend got some groceries for me so I could sleep instead this afternoon.
~Elizabeth is perky, compliant, cheerful, flexible and simply the best patient a hospital could hope for. She makes hospital stays EASY (except for the insomnia thing!) :)
~Delicious Harvest Bisque with grilled cheese on french bread for dinner thanks to another foodie friend.
~Coffee and visitors at just the right time yesterday. And a friend to distract Elizabeth so I could talk with yet another team of doctors who wanted "the whole story".
~A Grandpa who is willing to spend his 60th birthday alone and send his bride of 39 years on a plane to be with his ailing granddaughter.
~Friends who care for, love and enjoy our daughters so I can be at peace in the hospital with Elizabeth.
~Matt works AT the hospital where Elizabeth is admitted. He RARELY has to take a vacation day and is always only a phone call and a few steps away.
~What appeared to be a really sad development a month ago--Hannah needed to be weaned and only takes formula from a bottle--has become a tremendous blessing: She's thriving and we have the flexibility to leave her with Grandma or a friend when I can't keep her with me at the hospital.
~lastly for tonight...a sweet video of Elizabeth taken at the height of her fevers on Wednesday night...http://www.youtube.com/watch?v=vzLqt8RYvAI

Goodnight sweet friends,
Love,
Sara

Another day older...

Elizabeth spent her 5th birthday getting much better. It appears the antibiotics have finally started working. As you'll see below, she's feeling better and starting to act more like herself. Folks from around the hospital and around town stopped by or sent gifts and Elizabeth felt properly celebrated despite her location.

It's now almost 11pm and Sara just called me to say that Elizabeth still hasn't fallen asleep. Typically, just as she's starting to get better, Elizabeth gets a more than a little maniac and seems driven to catch up on all the talking and playing she missed while really sick. Pray that she'll give Sara some peace and quiet tonight...

The photos attached take you from pre-sick, to really sick, to getting better, to the events of the Birthday, to her cupcake inspired insomnia:

Happy Birthday Daddy! (Sunday 10/10)

Sweet Elizabeth in her "comfort zone"

Birthday Breakfast: Chocolate Chip Cookie!

At mommy's recommendation, Elizabeth tried Chocolate Milk for the first time in honor of her birthday....her response? "MMMMmmm tastes like.....quesadilla!"

For a girl who loves her quesadillas, that's a high compliment!

Princess Balloons from Ms. Megan!

Happy Birthday Princess Elizabeth!

Birthday's over, NOW WHAT??

Elizabeth Update

No news is pretty good news. Elizabeth spend the day with fevers to 104, but it looks like the broad range of antibiotics they are using are finally kicking in- our limp dishrag of a daughter has perked up a little in the last hour. We don't have confirmation that she had bacteria in her blood stream again, but that's what everyone is assuming based on her fever pattern and how sick she looked. We are extremely grateful that my mom is going to be able to fly out tomorrow and stay with us until Sara's mom arrives. Since we're anticipating at least 10 days in the hospital, they'll be a big help.

Tomorrow is Elizabeth's 5th birthday. She also spent her 2nd birthday at Children's, so she's no stranger to important days passing, but it seems sadder to us this time around. Pray that we'll have some creative idea for how to mark the day despite our circumstances.
Thanks to everyone for their prayers...more info when we have some.

Pray for Elizabeth

Matt took Elizabeth to the ER last night after a day of high fevers and no probable cause. Her white blood count was 15,000 so she's pretty sick, but we don't know fur sure if it's in her blood. We'll hopefully get those results today sometime. Neither of them got any sleep last night, so after an IEP meeting with Elizabeth's therapists this morning, I'll head to the hospital with Hannah in tow. Our friend Rachel is watching Ruby this afternoon. Matt's turned in a grant yesterday morning (praise the Lord) but yesterday started his two weeks of Attending duties so we're still working out logistics. Obviously we'd appreciate your prayers. Her fever is hovering around 104, so we need to know what we're dealing with so we can get her on the right medicines.

The Lord is my light and my salvation; Whom shall I fear?
The Lord is the defense of my life; Whom shall I dread?
I would have despaired unless I had believed that I would see the goodness of the Lord In the land of the living.
Wait for the Lord; Be strong and let your heart take courage; Yes, wait for the Lord.
Psalm 27: 1, 13 & 14