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!

Hanging in there

It's been a few days since we sent an update...mostly because, though Elizabeth is stable and doing well, we're exhausted! The short story is: the Infectious Disease team was able to narrow the "bug" down further and now has identified it as streptococcus pneumonia ("strep-pneumo" for short) . As a result, they are giving her a new antibiotic specifically for that infection and have decided she only needs 7 days of antibiotics once her blood cultures come back negative (meaning there's no more of the bacteria in her blood). As of now, it looks like that means we can go home on Friday, a full 10 days before Baby Girl Harms is due to arrive. At the same time, she's still being treated for her "c-dif", and the upside to that is, we're on isolation, and can't have a roommate! (insert great sigh of relief here!) All in all, Elizabeth is doing really well. She's a different child that she was during our last hospitalization, and if it's possible, the gains she made in terms of over coming her fear of ALL things hospital, have continued. She's friendly to everyone who walks in (even though they're all wearing yellow gowns and gloves), she participates in her vital checks with great delight, and is cheerful, active and engaged, unless she's getting stuck for another IV or blood draw.

A few more things we're grateful for:
-Our own room
-Elizabeth's emotional stability
-Once again, being hospitalized where Matt works
-All the meals we've been receiving at the hospital. It may not seem like much, but having breakfast, lunch or dinner delivered to us at the hospital is a HUGE blessing since Matt is working hard and I can't really leave Elizabeth.
-My pregnancy is stable and shows no sign of "ending" soon. :) Stay in there Baby Girl!!
-The help of a few friends (Jenny, Jill, Betsy and Paul to name a few) who have come by the room and played with Elizabeth so I could go to OB appointments or run home, or simply lie down and put my big swollen feet up...it's SUCH a gift to me.

A few things we'd love your prayers for:
-NO complications for Elizabeth that would keep us in the hospital past Friday
-Stable IVs. She's blown 2 already, the antibiotic she's on is known for being "hard on veins", and she's a "tough stick". Today they had to poke her 5 times in order to get a new IV in and in the end only were able to get enough blood for SOME of the labs they wanted. They'll have to try again tomorrow for more blood. Please pray for a "one stick wonder!"
-Energy when we're awake, sleep when we need it, and continued grace for this.
-If there is ANYTHING that's brewing, regarding Elizabeth's health, that would complicate the next few months, that God would bring it to the attention of the Dr.s so it can be dealt with.

Ok, I must sleep now. Matt's at the hospital overnight, so I have to take advantage of the uninterrupted night ahead.
Thank you so much for continuing to support our family through this.
Love,
Sara (for all of us)

 

Where's Sherlock Holmes When You Need Him?

It's time to break-out your gloves and gowns...Elizabeth is turning out to the world's cutest little biohazard with attitude! Today, we got a preliminary identification on the bacteria growing in her blood (Streptococcus viridians, if you're curious) and fortunately, it's VERY sensitive to antibiotics. This explains why she was sooooo very sick yesterday and today is back to her usual self. Everyone thought that this bacteria was enough to explain her high fevers and white blood cell counts. So it was a bit of a surprise to find that her intestines are also infected with a different bacteria (Clostridium difficile)! This type of infection can also explain her high fevers and white blood cell counts. Having two simultaneous and severe infections seems to be Elizabeth's M.O. If you recall, her last blood infection was with enterobacteriacea coli with a simultaneous intenstinal infection with Rotavirus. Fortunately, her recovery M.O, seems to be a quick return to her cheerful self.

We are still in search of an explanation for these infections. It is possible that the intestinal infection weakened the wall of her colon enough to let the bacteria escape into her blood stream. More tests are in process to exclude more serious possibilities (like an infection of the heart valves). Regardless, it looks like she's going to need 2 full weeks of antibiotics by vein! For those of you keeping score, that means Elizabeth should come home from the hospital on Thanksgiving Day, a mere 5 days before our delivery date for Baby Harms #2. That's cutting it a bit close for our tastes.

Thank you all for your prayers. A couple of additions:

1. The intestinal infection Elizabeth has is VERY infectious. Everyone entering or exiting the room must wear a disposable gown and gloves. Elizabeth can't even leave the room to go to the play areas. Pray that Sara and I won't get infected (especially since up until today we've been holding and changing her without protective garments).

2. There's a chance Elizabeth could receive her antibiotics at home if a semi-permanent IV could be placed. As a newborn however, she clotted many of these types of IVs, including one serious clot that almost damaged her kidney. We will need some serious wisdom as we decide whether it's worth the risk of another blood clot to be able to bring her home sooner.

3. As always, there are some "new" things popping up on Elizabeth's labs. There's unexplained blood in her urine and some funny looking red blood cells in her serum. Pray that not-scary explanations for these abnormalities will be found....and quickly.

As for the photos, the first one shows her making the sign for "piggy." The second shows her playing "beads" with one of my co-workers. He's mostly out of the shot, but his lemon yellow body suit and gloves are just visible!

Thanks again for all your support and prayers. We are truly being sustained by them!
Matt (for everyone else)

Elizabeth spends much of her time in the hospital delighting all the nurses and doctors with her sign language vocaubulary. I think she's using it as a sort of "jedi mind trick" to keep them from examining her. They show up, and before they can touch her belly, she's sigining and blowing kisses...smart gal! Here she's signing "Pig".


All dressed up and nowhere to go! Elizabeth LOVES her necklaces. They were an ingenious gift from her friend Jude, and provide lots of dress up options...and go with almost anything she wears. ;)

Here we go again...

Hello. This Matt writing. And just to get things out there quickly, Elizabeth was readmitted to St. Louis Children's Hospital again this morning. I'll spare you the dramatic details, but briefly put: last night she was fine, but this morning at 5:30 developed a VERY high fever...to high to be anything benign. So I woke Sara and we took her to the ER. A lot has happened over the day, but the take home is this: Elizabeth has an anaerobic bacteria growing in her blood stream. With this information, we've been able to get her on a set of antibiotics we think will work. In fact, after just two doses, Elizabeth's fever has started to come down and she's looking more like herself.

Most of tomorrow will be organized around trying to discover the source of the bacteria. Leading possibilities for the source focus on her intestines or the ascites fluid she has had in the past.

Through all of this, we are grateful to God for a number of things:

1. My board examinations were Tuesday, and it would have been considerably more stressful if Elizabeth had gotten sick just 1 day earlier.

2. The nursing staff knows us so well that they arranged for us to get the big half of our room from the outset.

3. Out support network here in town has been forged with our previous hospitalizations and is already helping us out.

Aside from focusing your prayers on Elizabeth's recovery and wisdom for her doctors, please also pray for:

1. Sara's health. She has the beginnings of a cold and is 81/2 months pregnant. Sleeping in the hospital is less than ideal in that state! We have an ultrasound scheduled for tomorrow morning to check in the baby and make final plans for delivery.

2. The co-worker who normally covers for me when Elizabeth is in the hospital is out of town this weekend. And in fact, I'm covering her patients! The logistics of helping with Elizabeth's care and fulfilling my work obligations is complicated.

We'll keep you updated as information becomes available,

Matt

Here's a picture of Elizabeth from yesterday...happily playing with her Physical Therapist.

 

Milestones

Last night marked a few delightful milestones for our family.

First, we made it through Matt's board exams! After a 7 hour exam, he's finished, and if he passed he won't need to revisit the material until next fall when oral boards roll around. It should be 10 weeks before we know the results, and in the mean time, we'll be bringing another little Harms into the world, so that should help keep us distracted enough!

Second, Elizabeth played, actually played, with leaves! She watched daddy rake them and then sat in the pile with mostly smiles. Until she was done, and then there were no more smiles. The fact that she's overcoming both her fear of new things, and her aversion to textures is an encouragement and gives us hope that someday she might do things like walk on grass, play in the sand and fingerpaint, without tears.

Hope you're enjoying your Fall!

 

 

 

Haute Couture

 

 

Still home, still steady...

This week, we had appointments with our Pediatrician, GI, Occupational Therapy and Physical Therapy to assess how Elizabeth is doing now that she's home. The good news is, she appears to be stable! She's getting some of her strength back, and with the help of her new orthodics and sassy new shoes (thank God for Target and cheap cute shoes!) she actually spent some good time on her feet.

 

At our GI appointment, we got the results of last week's intestinal biopsy. The mixed blessing is, there's no real diagnosis...just dilated lymphatics, which are probably a result of her portal hypertension. We're relieved that she doesn't have yet another illness, but this leaves us without a clear option for treating her diarrhea and seeming mal-absorption. So that will just have to be dealt with in baby steps over the next weeks and months.

We've started her on blood pressure medication and will see our GI again on Thursday and get labs drawn so we can see if she's retaining fluid, absorbing nutrition, keeping her anemia under control, absorbing potassium and finally, to determine if her liver is processing ammonia properly. (She's been out of the hospital for over a week, but remains extremely tired...possibly as a result of a build up of ammonia in her system from a liver that's not working perfectly)

In the middle of this, Elizabeth's caught a cold, and continues to have a serious diaper rash! We spent much of the afternoon moving a waterproof pad around on the floor so she could have some "air time". She still managed to pee on our floor and her bed. :) Thank goodness for hard-wood floors!

We're enjoying beautiful fall days here, and even made it out for a walk and some swing time at the park. She loved it. My muscle strain is vastly improved thanks to all the help we've been receiving. I'm at 35 weeks now. We're anticipating BGH2's arrival at the end of November and praying that God would protect Elizabeth from any more hospitalizations or complications before then.