Hunkering Down

I just got home from the hospital. Elizabeth's doing okay. Her spirits are good, but so far she's still growing bacteria in her blood, so we can't start the countdown to discharge (7-10 days from the 1st negative culture) yet. Matt spent the afternoon at home and I stayed with Elizabeth trying to get her moving a bit, and working on some crafts. She's still on contact precautions, so everyone (except family) who comes into the room, no matter how friendly, has to wear a gown, gloves and a mask (the picture)....not exactly a fun way to entertain visitors.  Below is a bit more of the medical information of where we are and how we got here, since you're not all obligated to read Elizabeth's chart! If you want, or your neurons just aren't firing quickly tonight, you can skip to the prayer requests at the end..

**minor review - (skip it if you feel like you totally understand what's going on with Elizabeth medically speaking)** Elizabeth had an umbilical catheter when she was 3 days old and waiting for heart surgery. That is a risk factor for developing a clot. We'll never know for sure, but in all likelihood, a clot broke off and lodged itself in her portal vein (the vein that supplies blood to half of her liver). Initially, this caused a major infection (bacterial peritonitis) in her abdominal cavity when she was 9 mos. old (that's how we originally discovered the clot)  Since then, that clot has caused her blood pressure to rise (called "portal hypertension"), and all the veins in her body to be under greater stress. Her body has done what it should and created new blood vessels to handle the pressure (called "collaterals") but the pressure is still not great and she remains at risk for a "major bleed" especially in the varicose veins (called "varices") in her esophagus where acid and popcorn etc. give them more grief. THAT is why she has endoscopies every 6 weeks...to check and make sure none are about to rupture. If they see one that's looking "ripe" they cauterize it off to protect her. Lastly, and the reason we're where we are today, the portal hypertension wrecks havoc on her spleen which gets all backed up and can't do its job of filtering out blood-borne infections. So a "bug" that your spleen would catch, hers doesn't. So she develops bacterimia. To prevent future infections, she's on "penicillin prophylaxis", but apparently it's typical that in winter, kiddos which poorly functioning spleens have these frequent "bacterimic episodes", and the system can't keep up. (4 episodes in 4 weeks??) So after this tour is all wrapped up, from now on, each time she spikes, we're supposed to bring her in to the hospital, for 48 hours if she doesn't grow bacteria, and for 7-10 days if she does...sigh.

Unfortunately, she's not a great candidate for a PIC line, (a more stable IV which would allow us to take her home and administer IV antibiotics here) because she's got a major clot in her liver (the cause of ALL our troubles at this point) and she's clotted off lines before...AND, since strep pneumo lives on the skin, a hole in her skin for an IV is a perfect way for her to get another infection. So for now, unless there are any other bright ideas from the Team, we're staying put.

So would you pray for a few specific things as we head into this week?
~Elizabeth needs to SLEEP. She's exhausted and yet struggles with insomnia while she's in the hospital.
~Continued protection of our whole family's health...if anyone gets sick, especially the kids, that makes us a lot less flexible.
~A big storm is supposed to be heading our way, with Ice tomorrow and 6-12 inches of snow on Tuesday...not exactly weather for shuttling back and forth from the hospital. We need protection and wisdom about how to juggle our crew.
~Favor for Matt at work. He needs heaps of understanding from his colleagues and bosses as once again, he is trying to be super-dad and responsible-employee (and amazing Dr!)
~Elizabeth's portal vein thrombosis (clot) to disappear!! THAT would eliminate ALL sorts of problems...

Matt & Sara Update

Can I tell you how encouraged we are by your gracious expressions of support, encouragement, solidarity and love? There are many of you who we haven't talked to in a while, and the idea that you still want to be part of the nitty-gritty of our lives and our journey with Elizabeth is such a blessing. Thank you for responding so quickly to my recent emails and bless you for your faithful friendship.

What's the real deal on Matt and I? We're tired. I think mostly we're tired of trying to get our footing, getting a little routine established, making plans and then everything getting blown out of the water. It's amazing how much easier it has gotten over the last 6 years (Elizabeth came into existence 6 years ago this month!) to hold our plans loosely, but I continue to feel like there is some way that we should be able to "prepare" ahead of time so that when E has another health crisis, we're not completely sidelined. But each time, though we're not as surprised and shaken, we are left scrambling to do silly things like do all the laundry that was "going to be done on Saturday", or grocery shop, mow the lawn, or clean the bathroom, pay bills, buy a mattress, figure out our 401K contributions...plan for Elizabeth's schooling...or a million other life things that keep not getting done, or canceling the few commitments we made when things were stable...and the process is rather exhausting.

At our core, we are less rocked by the ups and downs, but practically speaking, we look around and wonder if we'll ever climb out from under the pile! We're tired of being "needy", we're tired being unpredictable, undependable and so many days just incapable of doing it all.  All the thank you cards unwritten, all the baby and birthday and wedding gifts unsent...all the emails un-responded to...I hope you know how dear you are to us even when we feel like we're on a different planet.

And finally, remember we found out we were pregnant with Hannah while Elizabeth was in the hospital in 2009? Well, into the middle of our chaos comes another miracle. In the middle of all of this, we are rejoicing in the wonderful news that we're expecting again. It is was a complete surprise, (no, we weren't "trying for a boy") and only serves to remind us just how much God is in control of our lives. I'm almost 11 weeks and still in the middle of 1st trimester ickiness, but this time around the nausea isn't as severe as it was with the girls, so I'm so thankful to be able to be mostly upright! Lord willing, our 4th little one will arrive sometime in August, just after Matt begins his research schedule thanks to the KL2 Grant he received earlier this year! He'll have much more flexibility in his schedule and God knows, we'll need it!

So we are still very much in need of your prayers. For rest, for wellness, for wisdom, for grace. We know God's purposes are good and we know He loves us and He shows us regularly through YOU how faithful He is.

Tonight as I go to sleep, I will remember so many things that we're thankful for...

~A new life growing in me!

~Hannah Mae, the "world's happiest baby!" she's so flexible and content.

~Ruby, my little helper, our prayer warrior and burden bearer. She is an amazing sister to Elizabeth and Hannah.

~Matt, I'm so thankful God have me such a strong, steady, faithful husband and father to our girls. His incredible insight into Elizabeth's health issues has been amazing. And he can fall asleep ANYWHERE! So for now, I don't have to stay in the hospital!

~A private room on the 10th floor. Once again, a private room is like a kiss of kindness from heaven.

~A yummy casserole delivered to my door by a super busy wife of a med-student & working mommy of three! Amazing!

~A precious friend, who came to my house and helped me clean all afternoon and into the evening, so we could start the week on better footing....you, my friend,  are the best.

~Elizabeth, strong, brave, cheerful, flexible. She makes this so much easier than it could be!


We sing this song over our girls each night as we put them to bed. Tonight, we pray it would be true for you as well.

The Lord bless you and keep you.
The Lord make His face shine upon you.
And give you peace,
And give you peace,
And give you peace forever.

Good News, Bad News

The good news is:

Matt met with the Infectious Disease Dr. and what we're seeing with Elizabeth is totally typical for kiddos with a poorly functioning spleen (mostly kids sickle cell anemia). So it's not uncharted territory as far as treatment goes.
 
The bad news is:

The treatment is 7-10 days of IV antibiotics. So we'll be in the hospital for a while.

I'll elaborate later, but for now, Matt's staying the night with Elizabeth and I'm at home with the girls, so I need to get dinner ready. Since it's RSV season, kids under 15 are not really allowed up to the patient rooms so we'll be working on childcare for the girls starting Monday when Matt needs to do at least some work.

Thanks for your prayers,
Love,
Sara

Here's a picture or E's recent lost tooth, and then from the ER this morning. Elizabeth, as usual, is a rock star. Hannah is enjoying holding down the stroller (aka: luggage rack)

Bacteremia

When Elizabeth started to spike again yesterday, we drove directly to the lab to get blood cultures. Matt met us at the lab since he was done with clinic, and we had a nice family dinner in the cafeteria and were able to come home for the night.

Unfortunately, we got a call from the hospital this morning. Elizabeth's blood cultures from yesterday afternoon grew bacteria, so we have to take her in to Children's Hospital immediately to get admitted for IV antibiotics. We're of course really bummed, especially since, in typical fashion, she's looking great this morning. BUT we're hopeful that we're making progress on figuring out what is going on with her little body.

Praise God:
*It's a weekend, so Matt's off, and while he has 2 patients in the hospital, he can see them this afternoon once I get there.
*Because of Matt's foresight, we'd arranged to get lab slips so at the first sign of another fever we could get cultures drawn before her fever got too high and killed off anything that would grow.
*We got to keep her at home last night and everyone got a great night of sleep, and now we get to deal with all this at the beginning of the day, rather than at midnight.
*The other girls are healthy and can visit the hospital, which gives us much greater child-care flexibility.
..for God's grace which we KNOW will carry us through.

Thanks for praying friends. We'll let you know when we know more.

Fever...Gone, Endoscopy...Complete

Just like in the past, Elizabeth cleared her fever so we were able to get her endoscopy this morning. Amazingly, we were in and out in under 3 hours. The GI said it was "the most boring endoscopy he'd done in a while" and we were thrilled he didn't have to cauterize any veins.
Unfortunately Elizabeth's tooth did not fare so well. It was knocked loose by the breathing tube and this afternoon it was bugging her, so we pulled it! Can the tooth fairy still come if a tooth didn't die of "natural causes?"
Thanks for your prayers!

Quandry

Just a quick request for your prayers for Elizabug. For the 3rd time in less than a month, she's spiking a fever and complaining of abdominal pain. The first time she got up to 105, and we spent two days at Children's Hospital. We prayed, we waited and we believe God healed her! Then a week later, same fever, same symptoms, so we watched her and since she only got up to 102, we kept her at home, prayed and within 24 hours, she was perking up. Now, a week later, we're at it again. She's at 103.7 this time, so we're still watching her, but are wondering if there's something more than just a virus going on...We need wisdom. She's supposed to have an upper endoscopy tomorrow morning...so we'll continue to pray and wait and see.

Celebration Time!

We could hardly wait to get home after receiving our discharge paperwork. We quickly made our way to our favorite cupcake shop to pick up some tasty treats for our coming home party with Ruby. Here's a little video of our festivities:



Thankfully our sitter was able to stay a bit and help me transition home and now 2 of the three girls are sleeping soundly. It's good to be home.

We're Home!!

Elizabeth lost her IV at around 4 this morning, so when they came to
look for another site at 5am, and couldn't find a good one, Matt
suggested that perhaps we could hold off and let the team decide if 8
hours of antibiotics would matter if her cultures were still
negative....so they talked and eventually decided to send us home,
with a clear understanding that if her cultures grew something at 47
hours (unlikely) then we'd bring her back. We gave them our promise
and headed for the door before they could change their minds!
Elizabeth practically pranced out of the hospital. We stopped to take
this silly picture with a visitation dog and then were on our way home
for cupcakes to celebrate.

Thanks again for praying for us! Our family is holding together and Elizabeth is well. To God be the Glory.

Elizabeth's holding steady

"She's not as sick as she was"...that's the diagnosis around here. Elizabeth's fever came down with the help of some Tylenol (which we have to give her cautiously because of her liver issues resulting from the clot there) and overnight she held her own and hasn't spiked since. Her abdominal pain has "resolved": she isn't complaining and doesn't react when we push around on it. So she's on broad spectrum IV antibiotics for 48 hours and if her blood cultures from last night remain negative and she doesn't have anymore abdominal pain, then the plan is for us to get discharged tomorrow (Thursday) afternoon or evening. Yay!

Matt saw patients this morning, so I sat with Elizabeth in the hospital today while Hannah & Ruby played with our sweet friend and babysitter here at our house. Matt's back at the hospital overnight and we'll swap again tomorrow so he can avoid canceling his clinic patients, some of whom have waited 6 months to see him. So we've got a plan through tomorrow afternoon....everything after that is up in the air. Thank you for your prayers and your emails of encouragement. They were such an encouragement as I headed off to the hospital this morning.

Sustained by His grace,
Sara

Re: Prayers Please

Elizabeth's chest xray was clear, her blood work was normal and the culture is still "cooking" so we'll see what shows up (if anything) after 24 hours, her urine looked okay except for her typical amount of blood, and her abdominal ultrasound showed air in her intestines but nothing else significant. Her fever came down with some Tylenol, but the fact that she spiked to 105 means they want to keep her for IV antibiotics until her cultures come back negative, observation of her pain and serial abdominal exams, so.....Elizabeth will be admitted overnight. Please pray that they're able to get a room quickly so both of them can get some sleep.

I was praying earlier & at the same time wrestling with how to pray..."God if it takes an illness to uncover some lurking thing in Elizabeth, then use it....if abdominal surgery would allow Elizabeth to get her massively over sized spleen taken out and that's what needs to happen then have your way Lord...Don't let her be sent home if there's still something that needs attention....but send her home quickly Lord, spare her and us another hospitalization...."

As always, we're a jumble of thoughts and prayers and desires...and God reminded me of this verse:

Hebrews 4:14-16

Since then we have a great high priest who has passed through the heavens, Jesus, the Son of God, let us hold fast our confession. For we do not have a high priest who is unable to sympathize with our weaknesses, but one who in every respect has been tempted as we are, yet without sin. Let us then with confidence draw near to the throne of grace, that we may receive mercy and find grace to help in time of need.

God knit our little miracle together in my womb, He sustains her life every day...He knows her. And he is the source of all the mercy and grace we need right now.
I'll update you tomorrow....
~Sara

Prayers Please

We'd love your prayers for our sweet Elizabeth tonight. After having congestion this week, but getting a glowing report from our regular check up with ENT yesterday ("Her ears look the best we've seen them!") and having a stellar appointment with Endocrinology today ("She's in the 16th percentile for height on the regular growth charts").......Elizabeth fell asleep during her quiet time today (first red flag) then she complained of abdominal pain on the lower right side, curled up into the fetal position and slept for another two hours (2nd red flag). When she started to spike a fever and her abdominal pain was still significant, so Matt took her to the ER. As of an hour ago, she was up to 105 and in a lot of discomfort. Would you pray for her?

After a great sermon on prayer this weekend, I determined to pray with hope at every opportunity, and continue to believe that our God does miracles and heals. I even told God he could make me look like a crazy over-reactive mom and heal Elizabeth in the ER if He wanted to...so here's my chance to walk it out. Pray that God will make us look crazy and allow her to prance out of the ER tonight! Of course we'll keep you posted as we know something.

Gratefully,
Sara

Harms Family Christmas 2010

Thanks to the generosity of some wonderful friends, our family was able to stay in a marvelous vacation home in San Rafael this year. There were 10 adults and 7 children under age 5 and yet there was enough space for each of us and our kiddos! We had a ball! Mostly we ate, laughed, fed kids, changed kids diapers, tried to get our sweet ones to nap and sleep and stay asleep...and then ate some more! We had a precious prayer time for Grandpa Harms and continue to pray that the Lord will heal Grandpa's cancer.

Matt and I were so thankful we were able to make the trip, AND that our girls, especially Elizabeth, were healthy the whole time. We can't wait to see everyone again this summer when we gather to celebrate Grandma & Grandpa's 40th Wedding Anniversary!