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!

 

 

 

Look out Dorthy...purple is the new "ruby"

 

Upcoming appointments

Days fly by. Elizabeth is getting bigger and stronger and if it weren't for her tube feeds every 3 hours & and doses of a half dozen medications twice a day, it would be easy to forget that her underlying health remains a huge concern. This week we'll see Cardiology and Gastroenterology. If her heart is handling the blood pressure medication, (which she's on in an effort to reduce the pressure in her verices) then we may move up to a full dose in the hopes of delaying a shunt or transplant proceedure that may become necessary if she bleeds.

Ruby is an angel. I'm slowly wading my way through the paradigm shift that is having a healthy baby and am enjoying it immensely. My saint of a mother is still here, still going strong and making sure I take daily naps and keep eating. We are so thankful for the meals, gifts, notes, emails and phone calls. We're overwhelmed on a daily basis by how loved and well cared for we are. Here are a few pics from this week. I'll send out an update when we're finished with this week's appointments.

Elizabeth LOVES her sit-and-spin!

 

Gotta love those pigtails

 

Our sweet Ruby Christine

 

Getting some "Granna time"

 

Little Sister, meet Big Sister

 

Happy 1 Week Birthday Ruby

What a week! We're a family of 4! Ruby is recovering from her jaundice and we're getting to do all the newborn things we didn't get the joy of experiencing with Elizabeth while she was in the ICU. Elizabeth has turned into a full-flegged toddler and is movin' and shakin' and keeping us on our toes. She'll walk before long if she can figure out how to balance. She's up to 26.5lbs and is thankfully staying healthy so far through this transition. Granna Peterson is still here and Matt's back to work so we're really appreciating all the meals graciously delivered from our new friends in St. Louis. Next week we'll have a follow up GI apt. for Elizabeth and will hopefully hear the final (or close to final) word on wether we'll be able to travel home for Christmas. Have a great week!

 

 

 

Ruby's Busy Day

On her 5th day of life, Ruby is quickly becoming adept at all things newborn. Here she shows off some of her newly acquired skills.

Ruby Tuesday

Welcome Ruby Christine!

Surprise! Sara went into labor the day before our scheduled C-section and endured 12 hours of labor before finally having the C-section. More photos and details will surely come later, but for now, here are a few pictures and the vital statistics:



Name: Ruby Christine Harms (Named after her grandmothers)
Born: Nov. 25, 2007 at 7:02 PM
Weight: 7 lbs, 13.7 oz
Length: 20.5 inches
Head circumference: 35 cm



Mother and baby are doing just great!

Here's a picture of Grandmas Ruby & Christine, with their one-day-old namesake.

HAPPY THANKSGIVING!

 

Home!

Nine Days, four IVs, two antibiotic injections, at least a dozen blood draws and IV attempts later and 1.2kg heaver, we're finally home! Elizabeth said goodbye with her usual charm and we left Children's with promises and hopes not to return soon. We'll continue to treat her for her GI bug for 3 more days (that means we'll still be on "isolation" at home) then we're back to our old routine. She's her chipper self and in case you missed it, now weighs close to 26.8 pounds!! Only a month ago she was 22 pounds and we wondered if she'd ever pass the 23 pound mark. Well, it appears we've landed on the right formula...she's gaining weight like a champ and we're tenatively allowing ourselves to believe the Dr.s when they tell us it's "good weight" and not fluid.

We're so thankful for all the all the prayers and support that allowed us, for the first time since Elizabeth was born, to make it through an entire hospitalization without a respite from one or both of our moms. There aren't enough thank you notes in at Walgreen's to sufficiently thank everyone who brought meals, sent emails and gifts and money and simply called to express your love. We are truely grateful for everything.

Here are a few pictures from our last day and trip home:

Look at those chubby legs!!

 

With Betsy's help, she's going to walk herself right out of that hospital!

 

Taking a break from unpacking to play with Daddy

 

So Happy to be HOME!

 

How We Entertain Ourselves in the Hospital

Clearly Elizabeth is feeling good, and if it weren't for that pesky blood infection and massively infectious GI bug, we'd be home and loving it. The plan is still to go home on Friday. She lost another IV today...Grrr. With the help of the Transport Team, we got the replacement in and she's back on track.

Tomorrow she'll undergo a small proceedure to fix a problem with her g-tube site, and then Friday, as long as nothing comes up, we'll head for home. Enjoy these videos!