Pictures from the last few weeks...

Granna & Papa came to town to help us welcome Hannah and we had a wonderful time. The girls kept them entertained and we all caught up on hugs and kisses. After almost three weeks, we were so sad to say "Goodbye". Click on the photo below to see the album of photos from Papa's fancy camera.

Hannah Mae Harms is Here!

Born: 5/14/10 at 10:56pm
7lbs 14oz
21inches
beautiful.

Happy Mother's Day

While we're still awaiting Baby Girl's arrival, I had a lovely Mother's Day and felt full to the brim with all the love and affection from my family. Matt's yummy crepes for breakfast, an enjoyable afternoon walk with my sweet friend Abby, and dinner out (read: no clean-up) made for a perfect day. I'm so thankful to be a mom and truly grateful for how I've changed as a result of the two little people God has entrusted to me. While the journey hasn't always been easy or painless, in the process of becoming the mom I want to be (still not there yet!), I know I lean on and love God more, and experience more of His grace and faithfulness on a daily basis. Praise God from whom all blessings flow.

"Wohoo!!"

I don't know if those words will be in the official report, but that's basically how we feel after a really good news from the surgeons this morning. On a side note, in addition to her Endoscopy, we were able to schedule Elizabeth to have her ENT clean out and assess her left ear (where her hearing loss was classified as "moderately severe") while she was under general anesthesia. St. Louis Children's is really good about doubling and tripling up on procedures to save kids multiple intubations and traumatic hospital experiences...and it's much more convenient for us too.

Since the ENT was able to get a good look while Elizabeth was in Lala land, she discovered the extent of a fungal infection in Elizabeth's outer ear (which we've been treating for the past few weeks) and was able to thoroughly clean it out, and also discovered her tube had come out, and the eardrum had sealed over trapping a lot of sterile mucous...so it's no wonder our little bunny couldn't hear!! So, she's got a brand spanking new tube in her left ear and both ears are spic and span, and in two weeks we will re-test her hearing and are expecting better results! So please continue to pray for complete healing for E's ears...that prayer request hasn't been officially answered yet! :)

In the other good news of the morning, the GI surgeon thought her varices looked good (grade 2 out of 4, 4 being badly at risk of rupturing) and this time didn't feel like he needed to do any sclarotherapy (the process of sealing off veins that will likely rupture soon). And he thought we might be able to wait for 3 months before looking again!

So it's all good news from us today! Elizabeth did great all morning, she was brave and strong and cheerful and as soon as her anesthesia started to wear off she promptly began negotiating for her favorite treats....animal crackers, a Belle sticker and a little Einstein's video...which I promptly supplied.

Thanks for your prayers and emails!

Endoscopy - Round 3

In the hub-bub of getting ready for Baby Girl #3 and preparing for a visit from my sweet friend, (My Abby from California is here for 4 days!!) I forgot to ask for prayers for Elizabeth's endoscopy today. It's easy for me to forget that there's a risk each time she goes under general anesthesia and each time they poke around near those varices, but I was up early this morning with sweet Ruby and thought I'd send out a quick request. We've got to check in at 6:15, so I have to go get her things ready, but please pray for a successful surgery (she's scheduled at 7:30am) AND that I wouldn't go into labor today. :) That would just be too complicated. Ruby will play at Sophie's house and Matt's got a full day at work, so we're all scattered, but firmly in His grip.
We'll let you know how it goes. There's a chance if things look good, that this could be the last one until the fall, we'll see...
Love,
Sara, Matt and the girls

Wanna help?

For a number of years now I've wanted to post about the things friends have said or done which have been particularly helpful to us as on our journey through Elizabeth's diagnosis. (And, to be honest, the things I wish I could have asked for, or expressed, but couldn't) This series of posts says everything I would want to communicate.

How to help a grieving friend

Thanks Kendra for posting this link!

Overheard

After toppling to the floor in her efforts to do gymnastics on Mommy's ever shrinking lap:

Daddy: What happened?

Ruby (in tears): I bonked my head!

Daddy: Why?

Ruby (with fresh sobs): Because Mommy's not a jungle gym!

Sifted Circumstances

"There is no circumstance, no trouble, no testing, that can ever touch me until, first of all, it has gone past God and past Christ, right through to me. If it has come that far, it has come with a great purpose, which I may not understand at the moment. But I refuse to become panicky, as I lift up my eyes to Him and accept it as coming from the throne of God for some great purpose of blessing to my own heart." -Alan Redpath

Changed

For a long time now I've been wanting to post a link to one of my favorite resources. The book is Changed By A Child: Companion notes for parents of a child with a disability. If you know someone who has recently received a diagnosis, I would encourage you to send this book to them....it has been a tremendous gift to me.  I regularly come across an entry that I want to send to everyone I know and say, "THIS is exactly how I feel." "This is EXACTLY how my life is"...This book has been so validating during the ups and downs of the journey over the past 4 1/2 years.

Case in point: After a particularly exhausting week of Matt being gone and feeling the weight of a new diagnosis for Elizabeth, I read this entry on page 278:

"Too Complicated

Vinetta sighed. Life was so complicated now. She had never reckoned on life being complicated. It was like knitting on a dozen different needles. ~Sylvia Waugh

Life withour kids is complicated. The disability itself is complicated. Our emotional responses are intense and contradictory. The medical issues are complex; the technology our children use is intricate. Filling out a medical assistance form is tricky, as is figuring out the special education system. Hunting for resources can be an experience in maze walking.

Then there are the multiple filters we have to run everything through. Our kid leaves for school happy and comes home irritable and belligerent. Is it physical: Is she constipated? Are her new shoes to tight? Or is it medical: Did we forget the medication today? Is she getting an ear infection? Or is it environmental: Did the teacher assign new seats? Is it frustration? Is she tired of not being understood when she speaks? Or is it just a mood, just being a kid.

Then of course there is all the rest of life--our other kids, our relationships, our job, what to have for supper, how to kill the crabgrass, when/if to take our vacation. We are knitting on at least a dozen needles. It is complicated and it is hard. But we do it. We drop a lot of stitches but we knit our lives. And what interesting, varicolored, unique garments they turn out to be."

Elizabeth's Audiogram

We got all the information we needed from Elizabeth's ear-specific audiogram this week. Unfortunately, it revealed she has mild hearing loss in her right ear and significant hearing loss in her left ear. The next step will be to get her fitted for hearing aides..hopefully before this baby arrives! The test itself was more stressful for her and the audiologist was concerned that if she responded so adversely to the headphone in her ear, she probably wouldn't be excited about big bulky hearing aides, even if they are pink and have sparkles on them. (yes, that's possible) :) The bottom line is, we're so thankful that her hearing loss is treatable and seemingly "fixable", but we're really disappointed that she'll have to endure yet another round of tests, and have to learn how to deal with another "thing" that's uncomfortable for her.

The most difficult part of the appointment was when Elizabeth said, "God needs to heal my ears!" I told her we were going to keep asking Him to heal them. I'm so thankful for her childlike faith and pray that her heart, like ours, would continue to be protected when God's ways are not our ways.

He is Risen!

Happy Easter from the Harms Family!

Aunties, Uncles & Cousins, OH MY!

We had a wonderful time during a week long visit from my sister and her family. Elizabeth & Ruby loved playing with "the cousins" every day all day and miraculously we all slept well, stayed relatively healthy and even managed to make it out of the house a few times! Some of the highlights were:

~Visiting the St. Louis Zoo and enjoying and ice cream treat
~Feeding the Coi fish at the Botanical Gardens
~A birthday party for the Braun cousins at the Cupcakery
~Long walks, playing in the park and lots and lots of reading, dancing, playing dress up and
~our niece Eiley asking her mom if she could have surgery...(apparently Elizabeth's scars were pretty impressive)...and then after hearing what surgery actually involved...saying, "Mom, We need to pray for Elizabeth more!"
~A wonderful date night...adults only, thanks to our sweet babysitter.
~The fact that after 8 days, we were all sad to say goodbye...the visit was perfect from one end to the other.

Svea & David's Visit

Long but successful day

Thanks so much for your prayers and emails of encouragement! It means so much to us to know you're thinking of us on days like these. Elizabeth did beautifully today we arrived at 9am and finally left at 5pm, but all in all things went smoothly. As we anticipated, her procedure got pushed back and she finally got wheeled away at noon.  The GI felt good about what he saw: increasingly scarred over veins in her esophagus (which are less at risk of rupturing and causing a life threatening bleed). He had to inject two which looked like they could bleed soon, but overall feels like we're "making progress". The long term plan is to continue doing an endoscopy with sclarotherapy every 4-6 weeks for 4-6 months in a row and then take a break for 6 months or so and repeat the cycle until her varices go away...most likely when she's in her early teens all the while, praying she doesn't have a bleed in the middle of all this and require us to go to plan B.

We've also had some new developments that we're still processing:
*Monday we learned that Elizabeth has conductive hearing loss in one or both ears and will need amplification (hearing aides) once we do further "ear specific" tests. Would you join us in praying for complete healing for Elizabeth's hearing by the next test on April 15th?
*It appears that Elizabeth sprained her ankle at some point this week! While we were at the hospital today they were able to do x-rays and an ultrasound to confirm that it's not a hairline fracture or a clot, so that's a relief, but the poor thing has been limping for 2 days and yet we have no idea how it happened!
*We've got 2 more appointments tomorrow and Matt and I have a conference call with a specialist on Saturday who might be able to give us some input on possible speech therapies for Elizabeth...so we'll see.

It was a long day, we're glad to be home and eager to see the end of this long week...
Blessings,
Sara

Elizabeth's Endoscopy Tomorrow

We're halfway through a big week for Elizabeth. She had 3 appointments on Monday and 2 today, has an endoscopy scheduled for tomorrow morning and 2 more appointments scheduled for Friday. She's been a trooper throughout and we would appreciate your prayers for a smooth procedure tomorrow. Her scopes are usually scheduled for first thing in the morning and this one isn't until 10:00am (so more likely 11:00ish) and that means she won't be able to eat at all, and won't get any water after 7:00am. Would you keep us in your prayers tomorrow? Ruby will hang out with Sophie and Matt will have a busy day of work, so it'll just be Elizabug and me and we're praying for a grace-filled day.

We'll let you know how it goes. In the mean time, If you want to see a hilarious video of Elizabeth, check this out: http://www.youtube.com/watch?v=wyww30LIxQA

Love,
Sara & Matt

Happy Valentine's Day!

The King of the Castle Returns!

We're THRILLED to have Matt home and get back to our little piece of "normal" over here. We had a great time during our "princess week" but are glad that King Daddy is home. We missed him and are so happy to be together again. It was a little hard to get Elizabeth to look at the camera, they were both so fixated on their Polly Pocket dolls...a sweet treat Daddy brought home from his adventures to Target in San Mateo...he he he....

A Little Sunshine

What's better than a glass of OJ? A dose of my girls in the morning! They've been playing "summer" lately...stripping down and "swimming" in the basement. Much of this was without my consent, while I thought they were quietly playing so I could make dinner...sigh. Well, I decided to embrace the fun and yesterday we went all out...swimsuits, inner tubes, flip flops and beach towels. We took turns jumping into the water (the yoga mat) and had a grand time.

 

Matt's dad's (7 hr!) surgery went well and if they had a bed for him on the ward, he'd be out of the ICU by now, so that's encouraging. The surgeons believe they got both the tumors out with the remainder of the pancreas and now it's just time to recover, adjust to his new life as a diabetic and stay cancer-free! We're passing the time during Matt's absence slowly...but things are going really well! We're hunkered down at home and all in all, having a really great time. Sweet friends have delivered a few groceries and necessities and stopped by to chat, and tomorrow (shhh, don't tell the girls!) we're meeting friends at an indoor pool for some open swim time. That will be a highlight of our week for sure.

We've also been doing a little preschool here and there. Elizabeth has started spelling Ruby's name so I cut out the letters in play dough and she figured out how to arrange them with only verbal
prompts from me about what direction the letters went. She's a smart cookie!

The Peterson Family at its Best

I've been wanting to post the following video since we got home...it just makes me happy to watch it and remember how much fun we have together.

This is why we move heaven and earth to spend Christmas with our families.

We just love them! Matt and I are totally delighted with our families of origin and then feel doubly blessed that we married in to such great families-in-law. And as you can tell from this video, we're a goofy bunch doing what we do best...eating and singing.

Elizabeth's follow-up

This fun picture of Matt with the girls was taken on our Christmas trip to CA by the fabulous Corrie Sands.

 

Elizabeth continues to recover well from her surgical adventure last week. We're pleased that her hearing is much improved and to clarify in response to some questions, the varicose veins in her esophagus were a mixture of many that looked "really good" and one that needed to be cauterized twice to decrease the risk of bleeding. So she still has varices, but they're stable and the treatment seems to be working. The incision made to close her g-tube site and remove the protruding gastric tissue was successful, but after 7 days under the bandage, we looked at it Sunday evening and were concerned that it might be starting to become infected. As a result, we saw the surgical folks on Monday. Apparently fistula closures are notorious for growing infections so they were glad to be getting an early jump on it and gave us special antimicrobial dressing and prescribed 7 days of nasty tasting, and REALLY expensive antibiotics. To keep track, this is her 7th antibiotic in 45 days...her poor GI tract must be completely confused.

 

On a side note, our peanut is a CHAMP at taking horrible tasting food/medicine. Her very first "milk" was a broken down formula for post-heart surgery kiddos that literally smelled and tasted like wet moldy trash...it was disgusting. Yet she grew to love it and even preferred it over breast milk for a while after we could finally introduce her to "the good stuff". She's taken liquid iron supplements on and off and that's like swallowing pennies, she takes penicillin every day, and that's notorious for making kids gag and now, the surgical nurse told us that most kids can't even get this current antibiotic down...and the only thing that sometimes works is blending it with Hershey's chocolate syrup. Well, she has to take more than a teaspoon 3 times a day, so rather than increase the volume of that torturous stuff, we gave it a shot and just gave it to her straight, without any flavoring...and she didn't even bat an eyelash! She was completely unfazed. Amazing.

 

After just three doses of antibiotics and 24 hours under the special dressing, the site looks improved and we're hopeful that we avoided a mini-crisis. We're especially grateful because Matt's on a plane now to fly to CA for his Dad's cancer surgery and will be gone until late Sunday evening. We'd definitely appreciate your prayers for an uneventful week and a successful surgery for Grandpa Harms.

"Flawless"

That's the word the surgeon used, so I guess we can use it too! Thank you for your prayers...All three of Elizabeth's procedures went beautifully. She was cheerful and peaceful all morning, despite the early hour, and after cheerfully chatting the nurse's ear off, responded well to the anesthesia and drifted off to a "happy place". This was her longest surgery to date and took almost two and a half hours...but she rested contentedly in recovery and 2 hours later woke up, drank some juice, scarfed some graham crackers and was ready to head home! Matt and I were pretty amazed! To top it off, she got to ride in her very own wheelchair out to the car and as we climbed in she cheerfully announced, "That was EASY!"

 

Amazing. We've gotten so used to curve balls & unexpected complications on this journey with Elizabeth, and honestly, sometimes have a hard time even hoping for a smooth and easy road. But lately we've been practicing believing that God is good ALL the time and have been meditating on Psalm 112:7 which says, "He will have no fear of bad news; his heart is steadfast, trusting in the LORD."...and incredibly, our hearts are growing in confidence and trust and rest. So it's good news all around. Ruby had a marvelous morning with Sophie and sweet Kristen offered to keep her until after her nap so I could get Elizabeth settled at home. What a good friend!

 

I'm off to tend to Elizabeth, but wanted to share the latest...Thanks again for praying for our family!