We're Home!

The girls are tucked in bed, and Elizabeth's only a few ounces lighter than when she last slept at home. We're back on continuous feeds, but she tolerated her full-strength formula today, so we're hopeful that we'll move to boluses within the next week. Grandma and Grandpa Harms arrive late tomorrow night, so she'll be in for a super surprise when she wakes on Friday. Thank you all for your prayers and encouraging emails. We read every one and they really lift our spirits! Thanks also for those who brought yummy meals. We're so happy to all be sleeping under the same roof again. God is so good. Sweet dreams everyone!

Discharge on the horizon??

Maybe today...She's mostly held down 3/4 strength formula, so that's promising. We'll keep you posted!

Hanging in there in the hospital

Elizabeth is doing okay today. She hasn't had a fever in 18 hours, so
that means hopefully the antibiotic is finally making some headway.
We've switched to a "safer" one and if she improves, we can change to
an oral version for going home. The glitch is, she's been unable to
tolerate ANY food since Saturday. She's getting pedialyte through her
g-tube around the clock, but has to be able to take nutrition before
we can go home. Please pray that she'll start to keep down some food
soon! Daddy's doing an amazing job. He hasn't left the hospital since
Saturday. Ruby and I have been able to spend the afternoon and early
evening there for the past two days and we'll go again today. There's
nowhere else I want to be than with BOTH my girls and Matt. Grandma
and Grandpa Harms arrive for a pre-planned trip on Thursday night.
We're so excited to see them and are praying we'll be home from the
hostpial by then...

Three Months and counting...

Ruby turned 3 months old yesterday. She's growing like a weed...or
should I say, a pillsbury dough baby...we LOVE it. She's talking quite
a bit. Lots of coos and gurgles. She's starting to sit up a bit in her
Bumbo chair (thanks Jenny!) and still loves matching with her sister.
:) She's given me a few nights of 8 hour stretches, and we're hoping
this is a trend! We are so thankful for her sweet little spirit. She
is truly a delight.

Elizabeth Update

I was hoping to have some difinitive news for you, but as it often goes, we haven't made much progress. We do know that she has Ecoli in her urine (thus the UTI), but it's not responding to one of the antibiotics she's on, and the other is one that is so heavy duty (and can cause hearing loss) it's not healthy to be on it for extended periods of time. As a result, they're still working to find an antibiotic that ecoli will respond to. In the mean time, she's throwing up most of what we're feeding her through her tube, and continues to spike fevers, so we know we don't have a good handle on her treatment yet. She got an ultrasound of her kidney this morning, but we haven't heard back yet.

 

The good news is, Matt is super-dad.  He's been totally available to stay with her at the hospital and is still managing her care beautifully, while running on only a few hours of sleep and few breaks. His constant presence there has made it much easier for me to be away with Ruby. We'll head up there in an hour so so, and spend the afternoon as a family. Ruby's been quite flexible and we're so grateful for the friends who've offered to watch her, and brought us groceries, and meals. We're frustrated that Elizabeth is in the hosptial and eager to get her well, but in the mean time, God is giving us supernatural grace to juggle this crazy life of ours.

 

Thanks for your continued prayers and support! Love, Sara

Bump in the road

Last night Elizabeth spiked a fever here at home and after waiting to see what developed, Matt took her to the pediatrician this morning. Our suspicions were confirmed when he sent us to the ER and she tested positive for a Urinary Tract Infection. Generally though, UTI's don't give a person a temperature of 104, so they're concerned that the infection has gotten into her kidneys or her blood. Since she only has one (horseshoe) kidney, we've got to be good to it! They've started her on IV antibiotics and are admitting her. We're hoping that this will just be a straightforward UTI and her blood cultures and ultrasound will come back clean. In that case, we could be home on Monday. BUT as we've experienced in the past...we never know. SO....I'm writing to ask you to pray for our family.

~Quick healing for Elizabeth & protection from the psychological stress of another hospitalization. Unfortunately, the hospital is practically full, so instead of our usual admission to 8 West, we're going to the 10th floor, and there we'll have new nurses & new staff, so we'd appreciate prayers for favor in our "new" digs.
~Grace and strength for Matt who will be doing this solo whenever I'm home with Ruby; for me (Sara) as I'm not able to be in two places at once; for Ruby, to be flexible as we haul her back and forth and require her to adjust her normal routine.
~A straightforward diagnosis and easy treatment so she can come home soon
~REST for all of us.

Happy Valentine's Day!

Jesus loves ME...and YOU!

Ruby Chats with Cookie Monster

Not to be outdone by her sister's vivacious personality, Ruby's got a few things to say too! I have a feeling I'm not going to get a word in edgewise pretty soon...

Dancing and Jumping

Watch out...Dancing With The Stars may be next!

Elizabeth's Health Update

This past Saturday we had an appointment with Elizabeth's Gastroenterologist. He's proposed doing a catheterization study, in order to see the exact scope (if possible) of Elizabeth's portal vein clot. This procedure would most likely involve an overnight stay in the hospital for Elizabeth, since she'd need to be on a breathing tube and the procedure would require threading an IV into her femoral artery and trying to reach the clot to deliver contrast. The bottom line is, Elizabeth seems stable on her medications and the next step is to see if we can once and for all fix the problem of her clot and her resulting verices by doing a Rex Shunt (yes...if this sounds familiar, we've been here before). The Rex Shunt requires that there be a portion of the portal vein above the clot to "hook into", so if the study shows that no such site is available, then we're back to square one: waiting for one of her verices to bleed and if one does, possibly listing her for a liver transplant.

After the cath study, she'll get another endoscopy to look at her verices. If, by a miracle, they are improved, then we may possibly be cleared to fly to California this spring...We're praying for that!

All in all we're doing well. We ventured out to church this past weekend...I spent most of the service in the foyer with Elizabeth, who isn't used to being quiet for more than 10 minutes at a time. If we keep her out of child-care for much longer, we're going to need to practice sitting still and being quiet a bit more before trying that again. :) We also made it outside for a few walks and Elizabeth got to practice her walking. Both girls are doing great. Elizabeth adores Ruby and kisses her every chance she gets. Ruby is cooing and smiling up a storm and we're getting into a grove here at home with the help of Ami, a gal we've hired to help me out a few hours every day during the week. She's been a godsend for me and Elizabeth just loves her.

Finally, one more piece of BIG news: Matt passed his board exams with flying colors! We are thanking God for getting us through that and now just have the hurdle of oral boards left. He's been officially offered the fellowship position for next year, so (Lord willing) we're for sure in St. Louis until June 2009.

Park Day

After being housebound for weeks now, Elizabeth finally got to play in the great outdoors this weekend. A warm spell...or more accurately, a "not freezing spell" made it possible for us to take not one but THREE walks. Our play time at the park was her favorite.

The Hazards of being a Pedestrian

This was Elizabeth as we gleefully departed on our Saturday walk.

 

This was her on our way back home.

 

What happened??

 

The sidewalk happened. She LOVES being mobile and just can't get enough foot action. She loves to march, stomp, "run" (aka: walk really fast) and "jump" (aka: squat and stand over and over, feet never leaving the ground). All of this is great physical therapy, but leads to LOTS of toppling over. She's a trooper though. If the damage is minimal, we say, "shake it off" and after a quick shaking of whatever apendage was hurt, she's off to trip over something else. We may need to buy a helmet if she doesn't pass through this phase quickly!

She's TWO!

Months, that is. At Ruby's two month checkup, it was unanimous: She's growing like a weed (12lbs 2oz, 22.5 in) and doing great! She hated getting her vaccines, but recovered beautifully. Now it's back to our daily routine of smiling, cooing, sleeping and pooping! Lots to do and so little time.

 

Walking into 2008!

I hope you've learned by now that a long silence from our end, doesn't mean something has gone terribly wrong...believe me, WE'D WRITE! Instead, we're completely swamped by the new adventure of being a family of four and simply haven't had a free moment in weeks. We all came down with a nasty cold on Christmas Eve, and Elizabeth got an ear infection on top of that. As a result, she wakes herself up every morning with with a hacking cough and a vomit...ugh. After almost 2 weeks of antibiotics and prescription decongestants, she's improving, but still throws up every morning. Obviously this is stressful for all of us, so we'd appreciate your prayers for her complete recovery and our continued health. We also need wisdom as to where to take her in public during this winter...everywhere we go people have colds, and while we don't want to be isolationist, we live so close to the edge already, so a simple cold is a major hurdle.

Aside from her cold, Elizabeth is doing beautifully. She continues to thrive on her formula diet, and in hindsight, we're considering it a bit of mercy that she went back to being tube-fed before Ruby arrived. While it does complicate some things, it also simplifies our life in other ways. In the middle of figuring out what to do with a newborn (remember, we didn't bring Elizabeth home until she was 8 weeks old) and trying to recover from almost 6 months of sleep deprivation, to have to start all over and train Elizabeth to eat by mouth right now might have sent me over the edge. As it is, she's gaining weight like a champ, growing stronger every day and her GI system seems to have fully recovered from the multiple attacks last fall. At this point, we're hoping to teach the girls to eat together...maybe Ruby will be a good influence on Elizabeth! :)

We have a follow up appointment with Elizabeth's Gastroenterologist on the 26th, and hopefully will hear the plan for her next endoscopy to assess her verices. By then, the blood pressure medication will have had a good long while to work, and she'll be close to 10 lbs heaver! We'll keep you posted.

Finally, the best news of the season...Elizabeth is finally starting to walk consistently! I know we announced her first steps back in August, but because of her hospitalization and her underlying low muscle tone and loose joints, it's taken her a long time to master this skill. As I described it to a friend: crawling is easier and takes less work on her part, so walking is a "trick" for her, much like jumping or hopping would be for a typical toddler. Trying to coax her to walk for extended periods of time is like trying to coax a typical toddler to hop everywhere instead of walking. They'd tire quickly and go back to walking. Well, Elizabeth resorts to crawling after a few steps and as a result, it's taken a while to master it. But she has! She loves the praise she receives when she toddles around, and is especially excited to walk if we bribe her with hand lotion. :)

Pretty in Purple

Ruby is growing up so fast! She's outgrowing some of her newborn clothes, and this morning I saw the first signs of some chub on her legs.

 

Happy New Year from Elizabeth & Ruby

 

A look back...

Only two years ago!

 

Merry Christmas

 

 

 

Snowed in and doing fine...

This week's round of appointments went REALLY well. At her cardiology appointment Elizabeth got an echo that showed her left ventricle has gotten smaller over the last month. That's an answer to prayer and means we can increase her blood pressure medication to a full dose. Otherwise, her heart is doing great and not showing any signs of additional problems.

At her Gastroenterology appointment, Elizabeth's GI was THRILLED with her progress. She's weighing in at 27+ lbs these days and that puts her in the 50th percentile for weight...pretty impressive since she went more than 4 months without really gaining ANY weight. We're happy with her tolerance of her new formula and while we're not making any progress on her oral eating, we're grateful that she's thriving in every other way. Unfortunately, her GI gave us the final word on Christmas travel and asked us not to leave the area right now. The blood pressure medication has not had enough time to make significant impact on the pressure in her verices, so it's unlikely that her risk of a bleed has decreased at all. The plan is to increase her medication, keep her on a good growth curve and then do another endoscopy in the late winter or early spring and perhaps do some repairs on any "leaky verices" at that time. We're so sad that we'll miss out on the Peterson Family Christmas this year, but in the hopes of lessening our disappointment, our dear friends, Matt & Abby will be flying out to keep us company over New Year's...we sure love them!

All in all, we're thanking God for a really stable season for Elizabeth. She's been thriving at home after that long stretch of hospitalizations. We don't plan to leave the house, especially now that we're snowed in here, (6 inches of snow today!!) so that decreases our chances of her catching something. While my mom was here to help after Ruby's birth, she kept Elizabeth moving and learning and thriving. Elizabeth is now taking 6-10 steps at a time and is growing in confidence daily. She's throwing up a lot less these days (still don't know why she's throwing up at all) and she's talking, singing & signing up a storm. We're so pleased. Now my mom has gone home and Matt's Mom has arrived (actually, she and Matt are navigating the snowy streets on their way home from the airport as we speak) and we're so thankful for the additional help.

Thank you for your continued prayers for our family. We are sustained by them and so grateful for your friendship. Here are a few pics!