Blog Archive

Tuesday, October 31, 2006

Elizabeth Archives - October 2006

Email Update Sent October 2, 2006:
Hi everyone,

Thanks so much for praying and emailing and calling in response to our last email...we feel so loved! Elizabeth is still home and doing well. Praise God we have SUCH a fantastic relationship with our GI team. We were able to speak with our Dr. multiple times over the weekend, and tinker with her diuretics from home in the hopes that she could avoid another hospital admission.

In fact, the next time you pray, thank God for Dr. Rhee. She is phenomenally accessible (she's given me her pager & cell phone numbers, as well as her email...) and is really going above and beyond the call of duty in order to keep Elizabeth on track. (and as a stay-at-home-spouse of a wonderful doctor myself, I'd also ask you to pray for HER husband...the one that she's taking time away from to sit on the phone with ME!)

For now, I'll be taking her in to get weighed 3 times a week, an we'll probably get labs drawn once a week, and in the in-between days, we'll be ready to do more tinkering if she starts reabsorbing. But we're home...that's all that matters. She's held her weight steady since Saturday, so what we're doing (including the prayers many of you are praying) is working!

Thank you again for your support...
Sara (for all of us)

Email Update Sent October 5, 2006:
Hi Everyone,

As Elizabeth's birthday draws near, we're realizing that we need to postpone the Celebration Open Houses we had planned for San Mateo and Clovis later in October. It's just too much for right now. We're so grateful for your prayers, so thankful for your support and friendship and still hope to pull it off one day....just not right now.

By way of a quick update, Elizabeth is doing remarkably well. She's stabilized on her diuretics and nutrition and has been gaining a stable amount of weight. As of Wednesday she weighed over 17lbs! We've had some productive therapy appointments this week, and it's evident to everyone that her nutrition is helping her grow stronger every day. I'd say she was growing like a weed, but "weed" implies tall and thin....she's growing like a linebacker! She has chubby little legs and arms for the first time in her life. Her puking has decreased dramatically, and we are amazed at how straightforward things are right now....she's eating, and keeping it down, and growing...This is definitely an answer to many prayers.

We'll update the website with more pictures soon...

Email Update Sent October 10, 2006:
Hi Everyone,
Today is Matt's birthday! As a happy birthday present for her daddy, Elizabeth weighed in at 8.2kg this morning! (That's 18.04lbs) She's packin' on the weight, and we're mostly sure it's good weight. Dr. Rhee feels pretty certain that even though she's gaining at this rapid (but not extremely rapid) pace, she still isn't displaying signs of respiratory distress and fluid retention, so we can wait to ultrasound her until next week...thereby avoiding any possibility of Elizabeth getting readmitted to UCSF on or before her 1st birthday on Saturday. We're really grateful.
Elizabeth continues to thrive on her fatty formula, and the result is, she's back on the growth charts! Here's a quote from our nutritionist:
"She gained 1.5 cm in her arm circumference in just one month, and significantly improved in both her muscle and fat stores. And, the best part about it is that you can see the difference just by looking at her! Her weight and length for age were right at the 5th percentile, with the resulting weight for length at the 50th percentile."
We're still doing weight checks multiple times a week, but don't need as many lab draws because she appears to be stable. As a result of her increased nutrition, Elizabeth his getting stronger and gaining new skills all the time. She's finally using sign language to say "more" on a regular basis, and is starting to show us a few more signs as well. She's bearing more weight on her arms and legs and she can sit for long periods of time without any support whatsoever. We've been waiting for so long to see signs of real progress in her gross motor areas, so this is a real answer to prayer!

Email Update Sent October 21, 2006:
Hi Friends and family,

The plan was to send you an update after our week of appointments, but that will have to take a backseat to a more urgent prayer request. We're headed back to the ED today...not for anything we've dealt with before. Praise God, she seems stable from a nutrition and ascites standpoint but she's possibly developed a clot in her left foot. (or leg or somewhere thereabouts) Long story short, her left foot puffed up on Thursday night, and in light of her symptoms over the last 48 hours, our pediatrician wants us to bring her in. Because of the questions that still linger about Elizabeth's clotting status (in the past she has both bled (sub-dural hematoma) and clotted (deep vein thrombosis and portal vein thrombosis)) so if this is a clot, then treating her may be tricky. We're still waiting for her blood studies to come back (they were started back in September, but take weeks to complete) so we need God's guidance as to what this is and the best way to treat it if it IS a clot.

In other news:
**Elizabeth is growing beautifully! She weighs 18.6 lbs (8.4kg) and is now in the 10th percentile for fat stores! (She's a chubby baby indeed!)
**Her nutrition has given her the boost she needed to start developing seemingly overnight! She's clapping, waving, on the verge of Calling Dada by his name...she says Dada all the time now, (even when I say, "Say Mama Elizabeth" her reply is..."dada...dada...big smile") She's her daddy's girl for sure! She's bearing more weight on her legs and seems stronger and more solid every day.

We're praising God for guiding us through these last storms, even as we look ahead at one that is possibly on the horizon...Will you pray for us today?

We are grateful for you.
Sara (for all of us)

Email Update Sent October 31, 2006:

Hi friends and family,

I know it's been a long time since we sent an update...after the scare with Elizabeth's foot two weeks ago, we've been stable, but busy! Matt's been working so hard this month and Elizabeth and I have had multiple follow-up visits with doctors to keep us from getting into too much of a routine. However, the theme of our trip to Clovis this weekend was "Don't stop sending emails!" and because we truly appreciate your prayers and your investment in our daughter's life and our lives, we will get back on the wagon, and keep you better informed.

Elizabeth's foot, while still puffy, has remained asymptomatic, so we're pretty certain it is lymphedema (simply - a fluid collection) that should go away with time. This is not uncommon for girls & women with Turner Syndrome, so we're really relieved that it's not something worse. Otherwise, Elizabeth continues to thrive. She's up to 19lbs ( 8.6kg) now, and thanks to a water mat (see picture) she received as a birthday present from Auntie Svea and Uncle David, she's finally decided that tummy time isn't so bad! In fact, thanks to the hard work ALL of her grandparents have been putting in to help her with her PT (physical therapy), just as we were preparing to leave Nana & Papa's house this weekend, Elizabeth rolled from her back to her belly for the very first time!

I can't adequately describe the sense of joy and relief and elation we felt at seeing her reach this milestone that we had many times all but written off as impossible. Part of settling here in "Holland" has meant giving up some dreams and hopes and letting Elizabeth's development occur on its own time line. Something as simple and yet HUGE about her rolling over causes our hearts to hope for things to come.

Each week we go to PT, OT and Feeding Therapy, this week we'll see her cardiologist, and next week we'll see hematology. We're down to every other week weigh-ins and labs, and once a month she'll get her Synergis shot to keep her immunized against RSV ( through the winter. Thank God for insurance to cover this!

On that note, some of you have asked if Elizabeth's medical care has created a financial burden for Matt and I. The wonderful thing is, the total cost for all of Elizabeth's hospitalizations and surgeries is nearing the 2 million dollar mark...and with the exception of copays, our insurance is paying for 100% of it. In fact, at the bottom of the itemized statement we received after her most recent stay, it read, "you have no further financial obligation for this claim. We hope we have been of service to you"...I should say so!!

Thank you so much for staying the course with us...we are humbled by your dedication over the long haul...
Sara & Matt

Elizabeth Archives - September 2006

September 2006 Email Updates
Email Update Sent September 4, 2006:
Hi Everyone,
Elizabeth is definitely enjoying being home, though she seems to miss the constant stream of visitors from her days in the hospital. I'm nowhere near as entertaining! As a result, I've taken to hauling her outside (feeding pump in the backpack and Ejoy in my arms) and walking to a little market and a cafe a block a way. She practices her waves and hi fives and generally delights everyone she meets and I manage to stay sane between her naps!
Today we went on a family trip to the San Francisco Zoo. I'm trying to get more comfortable with transporting her in preparation for three Dr/therapy appointments for Elizabeth this week. Tomorrow we will meet with her GI Dr. for follow-up on our hospital stay. Will you join us in praying for good weight gain and signs that her ascites and verices are still stable?
We are so thankful for your prayers and support.
Sara (for all of us)

Email Update Sent September 11, 2006:
Hi Everyone,
Today marked two weeks at home! We're slowly getting a routine down. We're learning how much we can feed Elizabeth overnight and when to turn it off to hopefully avoid an early morning puke (today was the first puke-less morning this week!) We're getting more accustomed to toting around her feeding bag and pump, and gaining courage to get out of the house. We made it down to Target and Church this weekend...and had our first initiation to Ej actually puking IN the sanctuary, WHILE the choir was singing...sorry Choir! (yes, we avoided the upholstery)
Today we had a follow up ultrasound and after our slew of appointments last week, we have mixed news to report.
Elizabeth is growing. Unfortunately, the ultrasound today confirmed that at least some of the weight is fluid in her abdomen. We'd suspected this, but it's still disappointing and troubling.
Also confirmed in today's ultrasound was the presence of gastric verices... (we had documentation of verices in the esophagus, but to date had only assumed they were in her stomach as well) These verices are throughout her stomach tissue, and are not good news.
We won't see our GI until next week. In the mean time, we're watching her closely, and praying for guidance.
On a personal note, today, I crossed over. I will never again judge anyone for how they dress in public. Today, I managed to leave my house, drive across town to our ultrasound appointment at UCSF's Mt Zion Campus, park the car, leave the parking structure, and make it to the middle of the intersection of Sutter and Divisidero before realizing I was wearing my slippers.
Please pray for us. ALL of us.

Email Update Sent September 14, 2006:
Hi Folks,
Please pray for us. Elizabeth is back in the ICU....all the same issues...she's retaining too much fluid, shortness of breath, not tolerating her feedings, no answers. She turned 11 months old today. We'll keep you posted.

Email Update Sent September 15, 2006:
Today was long for both Elizabeth and I. When the day started, Elizabeth was looking stable, and the general consensus was that sometime in the afternoon, she would be transferred out onto the floor (that's hospital-speak for the general pediatric unit...not the actual floor.) :) It started early with a chest ex-ray and an ultrasound to try to figure out where the fluid is collecting and was followed by an echocardiogram & a chest and abdominal CT scan. At this point in the day, Elizabeth spiked a fever, which meant she would remain in the PICU until we could identify the source. They took urine & blood (yes, involving needles) for labs and cultures and tapped her belly (requiring a bigger needle) to send her abdominal fluid to see if the infection was brewing there. Finally, after the CT showed some inflammation in her small bowel, she was taken late in the afternoon for a barium enema. Notice you didn't read anything about a nap or a feeding. Her feeds were cut off yesterday afternoon at 2:00pm, and remain off until we have a clearer picture of her GI issues. After much begging by yours truly, she was allowed small "comfort feeds" overnight (only enough food by mouth to calm her) and was again cut off at 5:00am. She couldn't eat all day and hasn't really slept much over the past two days. Despite this, she was amazingly cheerful, calm for the procedures and even when she was spiking her temp, the resident said, "Wow, she looks so good!" That's our girl. Unbelievable.

A few blessings we've already experienced:

Michael Pickens, our all-time-favorite GI Fellow is on service this month, so he is again closely involved in Elizabeth's care. This has allowed for extraordinary continuity of care because he doesn't need to get to know her from the beginning.

Elizabeth is an angel. God has graced her with such a strong and graceful countenance...I'm amazed at how well she's going with the flow.

Despite the fact that it was a Friday, Elizabeth managed to get every single study we needed (two of which weren't ordered until after 2:00pm!!) Until the last minute we thought we'd have to choose between the tap of her belly and the barium enema (not a fun choice), but in the end, both were accomplished, which means she'll be allowed to "comfort feed" as necessary throughout the weekend rather than having to go without until the test could be run on Monday. Can you imagine trying to keep an 11 month old from eating for 4 straight days?!?! It's pure torture.

Our dear friends, Michael and Sara Easton arrived from Tucson for a visit we've been planning and have been a blessing to us already.

Please be praying:
-for a CLEAR SOURCE of her abdominal swelling and over all fluid retention.
-a clear path of treatment, and that Elizabeth would respond. Right now it feels like our treatments are machine gun fire...trying to cover the widest possible range of possibilities. We are discouraged by the lack of direction we feel in attacking the problem!
-healing of her symptoms: fluid retention, fever, infection (wherever it's coming from) and vomiting and ANYTHING else God wants to heal while He's at it. :)
-strength for Matt (still working full time) and Me (with Elizabeth 24/7)...and continued grace.

Thank you, thank you, thank you...
Your prayers are our lifeline.

Email Update Sent September 17, 2006: A good weekend for Elizabeth
Hi there,

Elizabeth continues to improve and has been moved out of the ICU. As an additional blessing, we're the same room we had during our previous stay, which means it's a private one, and that alone makes life a little bit easier. Elizabeth continues to charm and delight everyone she meets, and as my dad put it, "she holds court as usual, blowing bubbles and responding to all the adoration showered upon her."

My parents arrived on Saturday and gave Matt and I the chance to have a "day off" with our friends...a wonderful treat. As we go into this week, we're praying that God will give the doctors wisdom to "identify and fix the problems." So far, they've increased her diuretics, so she's got less fluid on her, and her belly has shrunk. Unfortunately, the last CT scan showed that she didn't have as much fluid in her belly as they'd thought, so her abdominal distention was actually being caused by something else. !!???!!! This was the reason (in addition to her vomiting) that they discontinued her feedings, but fortunately as her belly has shrunk and her lab results have come back clear, they've slowly allowed us to increase her intake. We're still not sure why she's spiking fevers...could be one of a 100 reasons, and we don't have any idea whether the diuretics will continue to work over the long haul. We're frustrated by a lack of answers, and it's hard to have to deal with an entirely new set of doctors (with the exception of Dr. Pickens) and have to try to bring them up to speed and keep them focused! It seems like each new person who "picks her up" as a patient, wants to take an entirely different approach, and is concerned about a new set of things and just trying to keep everyone on the same track is a challenge.

Please pray for:
-REST for Matt, me and my mom...who's sleeping over at the hospital a few nights while she's here.
-grace for Elizabeth...strength, courage, peace, sleep, comfort....she's an amazing child and we don't take that for granted.
-That the fluid would stay off, Elizabeth get to her goal nutrition and gain good weight.

Thanks so much for your prayers and phone calls and support and meals...
we love you,

Email Update Sent September 19, 2006:
Hi everyone,
Elizabeth continues to be relatively stable, but also continues to struggle to gain "good" weight. The team has yet to find the right balance of diuretics. After the latest changes, Elizabeth was puffy again this morning and her abdominal girth and her respirations were up again as well. (both signs that the fluid is increasing the pressure in her belly) We'd begun to talk about a discharge by mid-week, but now we're just hoping for before the weekend...we will just have to see. Matt and I are okay...tired and a little discouraged, but taking things one day at a time. My mom is here still and continues to sleep up at the hospital. Now that Elizabeth is almost getting her "goal feed" overnight, she's sleeping better, so that's a blessing. Not much else to report, but I didn't want you to worry in the absence of news. She remains our joy.
Much love,

Email Update Sent September 25, 2006:
Hi friends and family,

Until this weekend we had planned to send you an update with pictures of us going home, but this morning ( Monday) Elizabeth spiked a fever, so going home is on the back burner for now. The good news is the doctors have finally found a balance between her nutrition and her diuretic regime that could allow us to go home once her fever is gone for 24 hours We have no idea when that will be.

We are tired of being in the hospital and really ready to go home. Please pray for stamina for us and a quick recovery for Elizabeth so we can go home and stay home for a while.

We will keep you posted. Thanks for remembering us

Matt and Sara

Email Update Sent September 27, 2006:
Dear Friends and Family,

After three mornings of "maybe tomorrow," we finally got the green light to bring Elizabeth home this afternoon. Many of the hospital staff we have gotten to know came by to say goodbye and see us off...hopefully for good this time.

Elizabeth came home and showed no signs of ever having been gone. It's really, really, really good to have her stuff all over the house again! We are praising God for getting us through another hospital stay and praying that He'll spare us another one in the future.

Thank you for your faithful prayers while we were in the hospital. Now that we're home, pray that:

1. Elizabeth's oral diuretics will be successful in keeping her from reaccumulating fluid.
2. Elizabeth's formula will start to put the needed meat on her bones.
3. Sara and Elizabeth will quickly fall into a new routine, full of developmental opportunities for Elizabeth and plenty of rest times for mom.
4. Work will lighten up for me (some recent days have been 6:30am to midnight!) so that I can spend some quality time with my ladies.

Thanks again,
Matt (for Sara and Elizabeth too)

Email Update Sent September 30, 2006:
Our Pastor loves to say, "God's mercies are new every morning, so when you feel like you've run out of mercies, go to BED!" Well, we're not ready for bed yet, so we're asking for more mercies both for today and for the tomorrow to come.

After only 3 days of being home from the hospital, it appears that Elizabeth's diuretics are failing to keep her fluid from reaccumulating. The GI team is worried because both her respiratory rate and her weight have dramatically increased since Wednesday. If things don't improve by tomorrow, they've asked us to readmit her to the hospital for more adjusting.

This is disappointing and frustrating to say the least. While Elizabeth doesn't show signs of trauma from being in the Hospital (Praise God) so much this summer, it's the last place we want to go right now. The difficult part is, the hospital may be the best place for her. My mama's heart is torn.

Will you join us in asking God to make the path clear? We want her to properly absorb her diuretics, we want her to gain the appropriate amount of weight...and for the record, if this astounding weight gain is simply a miracle of God, then we need the other symptoms of fluid reaccumulation to go away! We are asking God to give wisdom, understanding and clarity to the Dr's treating Elizabeth (as well as to her parents!) and we need guidance as to whether we are overreacting. In the past, the team has been 'fooled' by Elizabeth's delightful countenance and missed some major problems that were brewing, so everyone is on eggshells...As you can see, we desperately need the Lord to guide us in these next hours and days...

I've attached a picture of Elizabeth taken this morning. She's finally wearing an outfit sized for 9month olds! She's getting big and strong and is such a delight.

Regarding our Celebration party, We're still hoping and planning for it so keep it on your calendars and pray that it can happen. I told the GI fellow "You all better put OCTOBER 14th on your calendars. Because if she's in the hospital on her 1st birthday, we may just have to kidnap her!" (He thinks I'm joking, but I think her grandma just might try it!)

Ok, that's all for tonight. Thanks so much for your prayers, they mean the world to us. It's easy for us to feel isolated with Matt working so hard, and Ej in and out of the hospital...but we are so encouraged by your emails, cards and phone calls. Even when we're not able to respond, we still appreciate them. And don't be afraid to call...if we're not available to talk, we simply won't answer. Your efforts let us know we're not alone.

Sara (for all three of us)