Thanksgiving & Beyond: Email Update Sent December 5, 2006
Hi friends and family,
When holidays roll around, it's difficult to let them pass without remembering where we were a year ago. This Thanksgiving was no different and let's just say it was infinitely better than last year, when our family took shifts visiting Elizabeth and I in her 4x6 cubicle in the ICU and Matt was on call
Our little butterball has lived up to her name and as of her last weigh in, she is in the 90th percentile for weight for height...that means she's one chubby baby!! **comparatively, only 3 months ago, she wasn't even ON the charts** We are praising God!
We're continuing to compress her feeds with pretty good success and this morning she puked for the first time in 3 or 4 days! (you know it's good when I've lost count) For those of you who have specifically prayed for her puking...thank you! We believe it's having an effect. She has completely eliminated her puke in the middle of the night, and the early morning one as well. We're saving money on laundry again and she's thriving with all the nutrition she's receiving.
We had a fantastic Thanksgiving in Clovis and Elizabeth enjoyed the beautiful fall weather in the Central Valley. We took LOTS of walks with Granna, met some local farm animals, watched football with Papa, and learned that the slide is her new favorite activity.
Thank you for holding our family up in prayer. We're so grateful for each and everyone of you. Because of your prayers, we really are doing well.
Thanks so much!
Love,
Sara (for all of us)
Tuesday, December 5, 2006
Saturday, November 18, 2006
Elizabeth Archives - November 2006
Email Update Sent November 18, 2006:
Hello Everyone,
It's been more than a month since we updated you on Elizabeth's progress. Before the inquiring emails turn into threatening ones, here it is...
Elizabeth has stayed out of the hospital for about 2 months! This "minor miracle" has allowed us to find something of a routine. It has also allowed us to make two trips to Clovis, where we loved making up for the family time we missed earlier this year. Elizabeth recently weighed in at 20 pounds, forcing us to purchase and install a larger car seat. And her recent chest x-ray and labs show that her diuretics are working to keep off the abnormal fluid build-up. Additionally, a recent ultrasound of her heart showed that one of her three heart abnormalities has completely disappeared! When they looked, her ventricular septal defect had closed, and the other two issues were stable. We obviously believe that God healed it up. Join us as we praise Him for this development!
Many of you have been asking about the status of her liver and portal vein thrombosis. At this point, the surgery to correct things is being put off because the medications are currently successfully keeping things in check. The longer they can put it off, the bigger she'll be and therefore, the safer the surgery will be. There are three situations that would prompt surgery: if she stops growing due to poor absorption of nutrients, reaccumulates fluid despite the medications, or if one of her dilated veins ruptures. Every day that passes gives Elizabeth's body and God's knitting more time to build passages around the blockage that could potentially keep her from needing surgery. God knows we'd love to avoid another surgery and hospital stay...especially since our insurance in St. Louis won't be as good as it is here!
With surgery on the back burner, we've had time to start noticing and worrying about some other "issues." Elizabeth's left foot remains quite swollen. Like her funky-looking feeding tube site, it's becoming just another "one of those things" that we hope will resolve at some point. We're not stressing over these though, as there are bigger fish to be fried, especially Elizabeth's vomiting and lack of progress in oral feeding.
Elizabeth is currently vomiting 2 to 3 times a day. Even worse, she wakes up every night around 11pm and again at 5 am to vomit some more (this is our least favorite of her tricks). It is likely that increasing doses of her diuretics are a major contributor. These are the mediations used to keep her fluid build-up from returning, so reducing the dose is NOT really an option. The vomiting is exhausting for her, increases the chance of her dilated veins rupturing, erodes her developing teeth and makes for some nasty halitosis! It is also very hard for Matt and I to helplessly watch our little girl throwing up. We have no idea how she stays cheerful through it all.
The other major difficulty continues to be Elizabeth's eating. More accurately, her lack of eating. Now, she has even stopped taking a bottle! There are two forces working against her learning to eat. The first is her complete lack of hunger. In order to keep her gaining weight, we have to continuously give her small amounts of formula through her feeding tube. Because her stomach is constantly full, she has lost the ability to sense and interpret hunger. We are trying to get her to the place where she tolerates intermittent boluses of larger amounts of formula. Theoretically, during the breaks in formula flow, she'll relearn what its like to feel hunger and then learn that taking things by mouth will satisfy. At this point, our moves toward boluses of larger volumes just make her vomiting worse. The second major roadblock is Elizabeth's aversion to food. The slightest morsel of food or drop of liquid in (or even near) her mouth is enough to trigger her gag reflex. This isn't surprising given that she has never been able to use her mouth to bring comfort (with all her teething pain and vomiting). Of all that's going on, her feeding issue definitely has us the most frustrated.
Would you please join us in:
1. Asking God to end Elizabeth's vomiting.
2. Asking God for a breakthrough in Elizabeth's eating skills.
3. Thanking God of closing the hole in her heart.
4. Thanking God for keeping Elizabeth out of the hospital and responding to her medications.
5. Asking God to remind us to be more diligent in sending out updates!
Thank you all for continuing to care,
Sara, Matt and Elizabeth
Hello Everyone,
It's been more than a month since we updated you on Elizabeth's progress. Before the inquiring emails turn into threatening ones, here it is...
Elizabeth has stayed out of the hospital for about 2 months! This "minor miracle" has allowed us to find something of a routine. It has also allowed us to make two trips to Clovis, where we loved making up for the family time we missed earlier this year. Elizabeth recently weighed in at 20 pounds, forcing us to purchase and install a larger car seat. And her recent chest x-ray and labs show that her diuretics are working to keep off the abnormal fluid build-up. Additionally, a recent ultrasound of her heart showed that one of her three heart abnormalities has completely disappeared! When they looked, her ventricular septal defect had closed, and the other two issues were stable. We obviously believe that God healed it up. Join us as we praise Him for this development!
Many of you have been asking about the status of her liver and portal vein thrombosis. At this point, the surgery to correct things is being put off because the medications are currently successfully keeping things in check. The longer they can put it off, the bigger she'll be and therefore, the safer the surgery will be. There are three situations that would prompt surgery: if she stops growing due to poor absorption of nutrients, reaccumulates fluid despite the medications, or if one of her dilated veins ruptures. Every day that passes gives Elizabeth's body and God's knitting more time to build passages around the blockage that could potentially keep her from needing surgery. God knows we'd love to avoid another surgery and hospital stay...especially since our insurance in St. Louis won't be as good as it is here!
With surgery on the back burner, we've had time to start noticing and worrying about some other "issues." Elizabeth's left foot remains quite swollen. Like her funky-looking feeding tube site, it's becoming just another "one of those things" that we hope will resolve at some point. We're not stressing over these though, as there are bigger fish to be fried, especially Elizabeth's vomiting and lack of progress in oral feeding.
Elizabeth is currently vomiting 2 to 3 times a day. Even worse, she wakes up every night around 11pm and again at 5 am to vomit some more (this is our least favorite of her tricks). It is likely that increasing doses of her diuretics are a major contributor. These are the mediations used to keep her fluid build-up from returning, so reducing the dose is NOT really an option. The vomiting is exhausting for her, increases the chance of her dilated veins rupturing, erodes her developing teeth and makes for some nasty halitosis! It is also very hard for Matt and I to helplessly watch our little girl throwing up. We have no idea how she stays cheerful through it all.
The other major difficulty continues to be Elizabeth's eating. More accurately, her lack of eating. Now, she has even stopped taking a bottle! There are two forces working against her learning to eat. The first is her complete lack of hunger. In order to keep her gaining weight, we have to continuously give her small amounts of formula through her feeding tube. Because her stomach is constantly full, she has lost the ability to sense and interpret hunger. We are trying to get her to the place where she tolerates intermittent boluses of larger amounts of formula. Theoretically, during the breaks in formula flow, she'll relearn what its like to feel hunger and then learn that taking things by mouth will satisfy. At this point, our moves toward boluses of larger volumes just make her vomiting worse. The second major roadblock is Elizabeth's aversion to food. The slightest morsel of food or drop of liquid in (or even near) her mouth is enough to trigger her gag reflex. This isn't surprising given that she has never been able to use her mouth to bring comfort (with all her teething pain and vomiting). Of all that's going on, her feeding issue definitely has us the most frustrated.
Would you please join us in:
1. Asking God to end Elizabeth's vomiting.
2. Asking God for a breakthrough in Elizabeth's eating skills.
3. Thanking God of closing the hole in her heart.
4. Thanking God for keeping Elizabeth out of the hospital and responding to her medications.
5. Asking God to remind us to be more diligent in sending out updates!
Thank you all for continuing to care,
Sara, Matt and Elizabeth
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...
Love,
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...
Love,
Sara
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!
Gratefully,
Sara
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.
Love,
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 ( http://www.cdc.gov/ncidod/dvrd/revb/respiratory/rsvfeat.htm) 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...
Love,
Sara & Matt
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...
Love,
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...
Love,
Sara
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!
Gratefully,
Sara
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.
Love,
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 ( http://www.cdc.gov/ncidod/dvrd/revb/respiratory/rsvfeat.htm) 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...
Love,
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.
Love,
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.
Love,
Sara
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.
Love,
Sara
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.
Love,
Sara
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,
Sara
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,
Sara
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
Love
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.
Love,
Sara (for all three of us)
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.
Love,
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.
Love,
Sara
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.
Love,
Sara
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.
Love,
Sara
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,
Sara
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,
Sara
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
Love
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.
Love,
Sara (for all three of us)
Thursday, August 31, 2006
Elizabeth Archives - August 2006
August 2006 Email Updates
Email Update Sent August 4, 2006:
We are writing again to ask for your prayers for Elizabeth and our family. Since our return from Memphis, Elizabeth has not been herself, eating about half her usual amount, sleeping for short periods of time, grunting a lot, and generally fussy. We had hoped she was just getting ready to pop another tooth, but last night, despite still being on very strong antibiotics designed to kill many different kinds of infection, she began having very high fevers again (about 103 or so). We took her to urgent care today, where tests have revealed that her portal vein has clotted off.
In the tradition of Elizabeth's ICU days, here's a more medically detailed explanation of what's going on:
This vein gathers the blood from the intestines and brings it to the liver for processing (detoxification and extraction of nutrients). If it is filled with a blood clot, those functions cannot be carried out. The toxins can build up leading to sleepiness and poor brain function. Without the extraction of nutrients, malnutrition and growth retardation are inevitable. Additionally, when the blood cannot take its usual route through this vein, the pressure builds up in the abdomen. That pressure causes the spleen to swell (Elizabeth's is twice its normal size right now), and puts her at risk for rupture blood vessels leading to massive bleeding into the stomach. Fluid leaks out of the blood vessels into the space around the intestines to form something called ascites (that's why her abdomen is so swollen). That fluid contains lots of nutrients and is the ideal place for bacteria to set up shop and grow. The leading theory now is that is what has happened and that Elizabeth's infection is of that fluid.
The in-hospital doctors have just now started seeing her to plan what steps to take next. At the very least, they will try to drain some of the abdominal fluid (ascites) to verify the infection, start her on even more powerful (and therefore more dangerous) antibiotics, and then begin the search for a cause for all this.
Tonight's brief list of requests:
1. That her infection would be quickly killed before it becomes more severe.
2. That her portal vein would be miraculously reopened before our very eyes
3. That Elizabeth's little brain would forget all the things that are being done to her to get these answers
4. That Sara and I would be strong in our faith
Thank you for joining with us.
Matt
Email Update Sent August 5, 2006:
Thank you all for your kind expressions of thoughts, encouragement and prayers. Despite a nearly sleepless night, we're doing alright. Elizabeth's night was certainly rougher than ours. Around midnight, she began having much more difficulty breathing. She was moved to the ICU for closer observation, and though she has improved a little, the doctors are working extremely hard to keep her from going onto the ventilator.
One of the the fourteen doctors who have taken care of Elizabeth in the last 24 hours said, "Elizabeth is a very complex case." Though she her medical condition is certainly complex, the way before us seems simple- hold on to our faith in God's perfect plan and rely on your generous love and support.
As more information becomes available, we'll pass it along.
Thanks,
Matt
Email Update Sent August 6, 2006:
Hi everyone,
Thanks for continuing to pray, and for your calls and emails. It means so much to know you're supporting us from near and far. Just to keep you from worrying in the absence of an update:
Elizabeth is stable today. She's breathing easier with the assistance of Oxygen in her nose, and they removed some of the fluid from her belly (ascites) to test for infection and that gave her a little relief as well. After multiple failed attempts at putting in IVs, they were able to get two good ones in her hands, so she is getting the labs she needs as well as the antibiotics.
They've taken a hiatus from testing, poking, or otherwise bugging Elizabeth today, so she'll rest up in preparation for what will be a busy week to try to figure out the source of the blood clot and how to treat it without harming Elizabeth with the side effects of treatment.
Matt and I are hanging in there. Matt's working (albeit just one floor up from Ej - so he's quickly available) and I'm at Elizabeth's bedside. I know my stable emotions and relatively alert state of mind are only the result of God's grace. We are so grateful for you.
Love,
Sara (for all of us)
Email Update Sent August 7, 2006:
Hi everyone,
Matt's working, so it falls to me to send the update today. It's a nice distraction from the ICU and it's something I can DO which is a change of pace from just sitting around watching things happen to Elizabeth. She did well overnight and when a VERY competent nurse came on and gave her morphine last night, we felt assured that she would be ok if we both slept at home. My parents arrived and have given Grandma and Grandpa Harms a break from their round the clock help, so we're falling into a little bit of routine. I was writing in Elizabeth's journal this morning and telling her that this ICU routine feels really familiar. That is both sad and comforting. We don't want to feel comfortable in the hospital, but this isn't as scary as the first time. We know many of the Dr.s, Nurses, Attendings and Fellows so at least I'm not trying to get to know the world here at the same time I'm watching Elizabeth go through this.
The hard part is, she's a different baby than she was during her first stay. We know her now, and she knows us in a deeper way...so that makes it harder to leave her, and harder (if it's possible) to watch her experience the pain and fear. That also makes it easier for us to comfort her, we know her and know what she likes and doesn't like. She LOVES her kiki - that beautiful pink blanket she kept with her during her 1st hospitalization and has slept with since. Having a comfort tool has helped tremendously.
Today the Team is regrouping, collecting input from the various specialists and trying to formulate a plan. The goals for the next day or two are to:
1) wean her from her oxygen
2) increase her feeds. Unfortunately she's back to her foul tasting no-fat diet, fortunately we can bypass her taste buds and put it directly into her g-tube.
3) get an echo to make sure she doesn't have a heart infection that's contributing to her illness
4) get a few more tests to give us a clearer picture for dealing with her clot. We still need to find out if Elizabeth has a clotting disorder which led to this portal vein clot in the first place, which would complicate the plans for her treatment.
Right now she's pretty comfy with the help of some morphine and a Baby Einstein video.
Thanks for your continued prayers and encouragement.
Love,
Sara
Email Update Sent August 9, 2006:
Dear Faithful Supporters,
Today has been a whirlwind of activity and studies for Elizabeth, and sadly, the resulting news is very disappointing.
Increasingly, it looks like Elizabeth's portal vein thrombosis began a long time ago, possibly as far back as her first abdominal surgery in November. I don't want to play Monday morning quarterback. But in retrospect, there were many signs pointing to her portal vein condition that Elizabeth's doctors should have noticed and acted upon. They are very apologetic about missing the signs and signals. God has given us the forgiveness we need to keep from being angry with them, but it is frustrating to think that this turn of events might have been prevented.
This afternoon, Elizabeth was placed on the ventilator for two important tests- and MRI and an upper GI endoscopy (like a colonoscopy, only down the esophagus). The good news is- she tolerated both without problems (except they allowed her body temperature to fall to 33.8 C by leaving her uncovered too long). There was fear that her large abdomen pressing on her lungs would make getting of the ventilator difficult. But Elizabeth handled it like a champ and is now breathing comfortably for herself.
The upper endoscopy shows that Elizabeth has developed varicose veins all along the inside of her esophagus. These vessels are not supposed to be dilated as large as they are, resulting in a very thin, easily ruptured wall. If ruptured, the bleeding can be life threatening, and because of location, very difficult to stop quickly. Elizabeth's veins looked on the verge of rupturing. The silver lining in this information is that we've hopefully caught this at a time when treatment might prevent her from having life-threatening bleeding into her stomach/intestines.
While the GI doctors could inject alcohol into each of the veins to help them clot and hopefully scar down, this requires frequent endoscopies (daily for a little while), each of which might require going on the ventilator. The only other treatment that would help prevent bleeding from these vessels is termed a "shunt." This consists of finding a way to divert the blood building up in the abdomen around the clot. This is where the MRI comes in. The best "shunt" surgery takes the open vein near the intestine and reattaches it to the open veins inside the liver. Today's MRI basically showed that there are NO portal veins in the liver to form that reattachment site. So we already know that Elizabeth will not be a candidate for the best surgery for her disease. Tomorrow, a liver surgeon specialist will see her and then meet with us to talk about the other options. As best as our reading has informed us, the side-effects of the other procedures are quite problematic, ranging from retardation of growth, removal of the spleen, mental slowing, etc...nothing resembling the picture of life in Holland we had begun to envision.
One of the harder things about this process is this: many of the praise reports we've sent out recently were ironically signs of her growing problems. For example, we mentioned her continued rapid weight gain, despite not meeting her goal for feeding volume. It's now clear that all that weight was fluid retention in her abdomen. She also appeared to be "fattening up," developing some chub in her arms, legs and face. Now that they have dehydrated her to try to get rid of her abdominal fluid, her "fat" has melted away leaving her very thin and almost malnourished appearing. That "fat" must have also been fluid retention.
We are also struggling with this fact: Sara and I had just started to accept our "life in Holland" (if you recall the story we sent out long ago). On our trip to Memphis, we interacted with several infants Elizabeth's age and could see in stark terms how far she was behind in several aspects. While we longed for Elizabeth to catch up, we were honestly able to rejoice in the health of these other children, and had relative contentment in Elizabeth's progress on our own special track. "Holland" was starting to feel normal. And now it feels like we're starting to pack for another move...to a place much less pleasant (not wanting to offend the residents of any country, I'll let you fill in your own idea of the worst place in the world to vacation). Life on the other side of shunt surgery looks very complicated and dominated by frequent visits to the doctor, many medications, and feeling always on the verge of another trip to the hospital.
More philosophical rambling can occur at a later date. For now, praise God that:
1) Elizabeth's "timebomb" varicose veins didn't rupture while she was on blood thinners yesterday
2) Elizabeth's varicose veins have been found prior to bleeding and there appears to be a surgical way to improve them
3) Elizabeth did so well with her ventilator event and is already breathing on her own
4) Despite the breathing machine again, Elizabeth's voice continues to be strong
5) Despite being in the hospital and unable to use her arms and legs due to IV's, Elizabeth was still smiling and trying to play this morning.
6) Elizabeth is hospitalized in my hospital, allowing me to help coordinate her care even while continuing my working responsibilities
Continue praying that:
1) Elizabeth's portal vein will miraculously re-open by the next time they look.
2) The liver surgeon's will have wisdom about which surgery to perform and when to perform it
3) Sara and I will continue to receive God's strength to make it through these straights
We love you all,
Matt (on behalf of us all)
Email Update Sent August 10, 2006:
Today was a quiet one, in which Elizabeth returned to being herself. It was a thrill to have her raspberry me when I entered the room this morning and to have her babble as I left. The liver surgeons stopped by today and think they may still be able to do the better surgery...but not until her abdominal infection is completely treated and she has regained some energy for the big operation (weeks?) This news is very encouraging, giving us hope that Elizabeth might even be able to return home for a brief period prior to her surgery. We're excitedly praising God for this change in opinion.
When major things seem to be going wrong, the minor ones somehow seem even more important. Tonight, we just about began hugging the nurse who suggested they swap Elizabeth to a room further from the Nursing Station. The drop in background noise level was immediately noticeable and will allow Sara (and probably Elizabeth) to sleep much more soundly. That's a praise report!
Thanks.
Matt
Email Update Sent August 12, 2006:
Hi everyone,
It's been a few days, so here's a quick update to let you know everything is alright. Matt will send a more substantial one tomorrow filled with specifics, but here are the basics:
-Elizabeth was transferred to the Pediatric ward today. They removed one of her IVs (only 2 more to go!) and removed the nasal cannula as well because she doesn't need extra oxygen anymore.
-My mom (affectionately called "the saint") slept up in the hospital with Elizabeth last night so both Matt and I could get some good solid sleep. We did. She did not. Unfortunately, some sicker kids came into the PICU in the evening, so they transferred us (because Ej was doing so well) to an "open unit"...still part of the PICU, but a shared room with 3 other babies...needless to say, sleep was not on the agenda for either Elizabeth or Mom.
-Matt has this weekend off, so my Dad drove over and all 4 Grandparents pitched in today to give Matt and I a much needed day off to rest, spend time together and recuperate a little. We had a WONDERFUL time and feel recharged for sure.
-We have a few days left of IV antibiotics and are counting down to Ej's discharge...it could be in the next few days...we'll see. She's doing really well and is at her feeding goal. We praise God daily that we didn't remove the g-tube when the surgeons encouraged us to. It has been and will continue to be VITAL to Elizabeth's recovery.
-Surgery is still on the horizon once she gets bulked up a bit and the infection and all inflammation is gone. Here's a short article about her condition and the upcoming surgery: http://www.childrensmemorial.org/depts/gastroenterology/liver/portalHypertension.asp
Amazingly, Elizabeth is such a brave little girl and is continuing to be cheerful and delightful despite all the chaos going on around her.
Thank you for your continued prayers...
Love,
Sara (for all of us)
Email Update Sent August 15, 2006 (AM): "Elizabeth's 10 Month Update"
Dear Friends and Family,
I hope that Sara has not independently written to update you about Elizabeth. Our time for communicating such details is very limited these days, so if she has, just disregard this message.
Elizabeth turned 10 months old yesterday!
We were reminded today that the vast majority of babies conceived with Turner's do NOT survive to birth (either due to in utero death or their parents' choice to terminate). So despite all of her medical problems and the what they mean for the future, we consider ourselves blessed just to have her smiling face around and her cheeks to kiss.
Elizabeth is doing much better, with some of the expect ups and downs of being medically challenging- needing a new IV, getting severe diarrhea from medications or a virus going around the hospital, starting to throw-up again when one of her medication dose got too high for her to handle. Despite this, she remains engaging and cheerful, playing as best she can with one arm and leg strapped to IV boards!
As the doctors have gotten some of her extra fluid off, she has become a VERY skinny little one. In fact, while in the hospital, she has lost an entire kilogram (2.20462262 lbs if you never joined us in the Metric Age), now showing all her ribs and feeling MUCH lighter in our arms. How those of you with normal sized babies manage to hold them is a mystery to us!
The plans for the next phase are starting to come together. She will likely have her surgery at the beginning of Sept. There is a raging debate among our caregivers as to whether she should stay in the hospital until that date. Many are concerned that her varices (the dilated blood vessels in her esophagus and stomach) looked extremely "ready to bleed." If that were to happen at home, Elizabeth could theoretically lose enough blood to damage her brain or kidneys, even bleed to death, before anything could be done. Others feel like the risk is not that high and the bleeding rarely that severe. We are very torn. While we don't want to expose Elizabeth to any excess risk, staying in the hospital seems unbearable. Sara has been sleeping their with Elizabeth while I sleep at home. Both of them are awakened 4- 6 times per night by everything from IV malfunctions, overhead pages and even the janitor who insists on changing the trashcan liner at 5 am! Additionally, leaving Elizabeth alone at the hospital is very difficult to do. The nurses are nice, but stretched thin, meaning their response time to her crying is abysmal. Neither Sara or I can bear the thought of her sitting in her crib, alone in her hospital room, crying for us! Fortunately, our parents have been around and have allowed Sara to get home for showers and food. We are extremely grateful for that.
So here are the prayer requests:
1. That Elizabeth would put on weight (not in fluid) to strengthen her for surgery.
2. That the doctors would come to some conclusion about whether she should go home, and that God would give us wisdom to decide.
3. That Sara would get better sleep at the hospital.
4. That our marriage would survive and even grow in this season of stress, drastically reduced face time and infrequent communication opportunities.
5. And of course that nothing else untoward would happen to our little daughter from now on!
We love you guys,
Matt and Sara
Email Update Sent August 15, 2006 (PM):
Hi Everyone...I only have a second, (a hospital "snuggler" is hanging out with Elizabeth in the room so I could sneak away and send this)...
I just wanted to let you know that we're doing ok...well in fact! In the middle of all that's going on, God's grace is so apparent...it's really remarkable. I find myself feeling (not just telling myself to be, but actually feeling) grateful, peaceful, joyful and hopeful.
God is answering some of our prayers...Elizabeth is doing great....not gaining weight yet, but at least holding down her goal feeds for the first time in her entire life! I'm getting great sleep at the hospital (yes, I said great)...especially since Elizabeth is on overnight feeds through her g-tube, so she's not waking up to eat!! The dr.s have made a plan...a few tests this week and hopefully schedule surgery for next week...so that means 2 or 3 more weeks here...or more, we'll see. Matt and I are doing ok...not seeing enough of each other but surviving!
I have to go...they're closing the computers down, but I just wanted you to know how thankful we are for your prayers....we're hanging in there!
Much love,
Sara (for all three)
Email Update Sent August 17, 2006:
Dear Friends and Family,
Today has been one of the hardest yet. Elizabeth underwent two procedures today to help plan for surgery, with grim results. It looks like her entire portal system is clotted, making surgery they'd planned impossible. As a result, it looks like the only other option is a liver transplant.
We're feeling a little devastated right now and could use all the extra prayers you can muster (and probably then some).
Thanks,
Matt and Sara
Email Update Sent August 21, 2006 (AM) From Michael Easton: "Prayer for the Harms"
To: Everyone receiving updates regarding Elizabeth Harms
From: Michael and Sara Easton, Matt and Sara's good friends
What: An invitation to prayer and fasting for Elizabeth
I realize that many of you have no idea who I am (Michael), but I have come to know Matt and Sara though my wife who grew up as a close friend to Sara.
As you all already know, Elizabeth's medical condition is quite fragile, and in the next few days, Matt and Sara are faced with some of the hardest decisions that I can imagine parents having to make. On top of that, there are having to decide what to do about his fellowship in St. Louis as well.
I realize that we all come from various spiritual backgrounds, and that we all have thoughts on how to face these kinds of situations. But, in talking to Matt, we have both come to the conclusion that things like this are just hard to deal with, no matter what you believe.
At 7:30 pm today (Monday) and tomorrow (Tuesday) people in Clovis/Fresno will be getting together to pray. I would like to invite all of you to pray with them, wherever you are. If you feel so led, I would also encourage you to fast, that is, to skip a meal and take that time and dedicate it to prayer. This prayer and fasting is not meant to be a magic bullet, and how they work remains a mystery to me. But I know God hears our prayers and desires to answer them. I also know that the Bible says we should do this for those who have need - and Matt and Sara have great need right now.
Matt and Sara will be sending out an update tonight with specific prayer requests to focus on. Please continue to stand with them and pray that they would would have the peace of God laid on them.
Respectfully,
Michael and Sara Easton
Email Update Sent August 21, 2006 (PM):
Dear Family and Friends,
It has been a quiet few days for our family as we have awaited "The Return" of the liver surgeon from being out-of-town. Elizabeth has been her delightfully cheerful self. She has even learned to wave "hello" while hospitalized. We have gotten a little more rest thanks to Sara's mom's willingness to sleep at the hospital. And the number of patients I care for in the hospital has remained extra-ordinarily low, allowing me the time to spend with Sara and Elizabeth. We are extremely grateful for all of these things.
Today, we met with the liver surgeon to begin discussing the next steps. While the vessels running into Elizabeth's liver are shot, the liver tissue itself looks pretty healthy. So the liver surgeon believes we should delay liver transplant as long as possible. But in order to do that, there are several issues that need to be dealt with now, including the risk of hemorrhage from her esophagus, malnourishment and ongoing abdominal fluid. He would like to perform a shunt surgery of some sort (to be determined during the operation depending on what they find when they go in). The only remaining decision is when.
Elizabeth is much younger and smaller than the children who usually need this type of surgery. A shunt surgery on someone weighing only 15 lbs is very rare. As a result, there is some debate about whether to try and postpone even the shunt surgery until Elizabeth is bigger. Proceeding now makes the surgery much more complicated due to her size. Waiting until later increases her risk of bleeding, problems with abdominal fluid and malnourishment. We need real wisdom on how to proceed.
In other news, Sara and I have begun questioning the wisdom of moving to St. Louis next July. I have accepted a fellowship position there that is exactly what I wanted. We had plenty of peace about making that choice and have begun looking forward to the cheaper rents, warmer weather and change of pace (after 8 years in SF). However, as Elizabeth's medical care gets more complicated, we're concerned about moving far from family...these last two weeks have reminded us how much we need their presence and help! The folks here at UCSF have re-offered me the equivalent position here and we need to let everyone know our decision by Friday. We are very torn, primarily because we felt such peace about St. Louis when deciding two months ago. We don't want to act out of our panic and miss a move God had intended. Neither do we want to take on the added difficulty of Elizabeth's health care so far from family.
As you pray for us (and fast if you desire to join in), please focus on these requests:
1. That we would have clear indication how soon to have Elizabeth's surgery.
2. That God might still intervene and heal her without the need for additional surgery.
3. That Sara and I would have clear wisdom regarding where to do fellowship training.
Thank you again for supporting us!
Matt
Email Update Sent August 23, 2006:
Hello again...after your dedicated efforts in prayer on our behalf, we thought you at least deserved an update :-)
Elizabeth continues to do well. She is chipper despite cutting yet another tooth (eight in total now), and has started learning to give high-fives! And her abdominal fluid remains stable.
The wisdom we have been asking God for has begun to emerge in the form of consensus amongst our doctors and through peace in our hearts. First, Elizabeth's liver biopsy shows that there is no damage yet, meaning she will not need a liver transplant anytime soon! We are very happy about this fact, especially since I was her most likely liver donor (I'd be thrilled to give it to her, but just as happy to hold on to it)! Everyone agrees that the next step is a shunt surgery (which kind will only be decided once they open her up and take a look around in great detail). And everyone agrees that NOW is NOT the time to do that surgery. She is too small and still recovering from her severe infection. They would like to see her gaining good weight and growing prior to doing the surgery, and are keeping us in the hospital for several more days to optimize her feeding formulas and schedule.
In other words, it looks like Elizabeth will get to come home before returning for surgery! We are both excited and nervous about this prospect. Excited...because we're sick of the hospital. Nervous...because Elizabeth's varicose veins will be untreated and could rupture at any moment! The bleeding could be rapid and severe, and in a worst-case scenario, could be life-threatening despite how close we live to the hospital. If she did bleed, this would prompt them to move the surgery timetable up (something which we are NOT hoping for). Oddly, Sara and I are feeling quite peaceful about this plan. We thought we'd be freaking out about the possibility of Elizabeth bleeding. But we aren't. We feel like the risk of this is small enough and that God will either spare us this event or give us the grace we need to deal with it if it occurs.
As for my career plans, peace and consensus are also emerging. With Elizabeth's medical issues seeming more managable (no liver transplant in particular), we've begun hoping we can still make it to St. Louis. So are several of my most trusted academic advisors. Unless God changes our hearts between now and Friday, we're leaning toward planning to go...and if Elizabeth's condition worsens in the next months, a probable back-up plan has me getting a local job for a year and then heading to St. Louis.
So thank you all for your prayers, thoughts and fasting. God has begun answering your prayers (and ours)...not by direct and spectacular healing (keep asking for that!), but through peace and the begins of resolution.
Between now and our next update, please continue praying for:
1. Confirmation that our course of action for Elizabeth is God's course of action for her.
2. Confirmation that my career plan is God's career plan for me.
3. The miraculous, TV-crew at the bedside type of healing we've been asking for 1.5 years now!
Thanks again,
Matt
Email Update Sent August 25, 2006: "Good Days and Bad Days"
Hi Everyone,
Yesterday was a hard day! Elizabeth is teething so she's in pain and the Dr.s had switched her formula to include mineral oil (for extra fat). Unfortunately, the mineral oil slowed down her digestion, so she got backed up and nauseated and puked multiple times throughout the night and day. By the end of the day I was exhausted, she was exhausted, she'd missed both of her naps due to blood draws and puking and dr. visits, so we were both at the end of our rope. Fortunately, they figured out the cause of the puking pretty quickly and were able to remove the oil and after 24 hours, Elizabeth woke up this morning back to her cheerful self. In the middle of the hard stuff, it was helpful to remember, yesterday was an anomaly...We are so thankful for such a happy baby. It is one of the blessings we don't want to take for granted.
In other news, Elizabeth gained some weight! She's up from 6.95 kilos to 7.08 kilos this morning. (and that's with all the puking) We're not sure if it's "good weight" yet, so we'll keep watching her, but we're hopeful that since she's taking in through her g-tube more than twice what she's ever consumed, some of it is getting made into chubby baby thighs.
My mom will go home tomorrow since Mat is off this weekend, and it looks like we're finally on a departure track. Possibly by early next week! We'll see....
Thank you for your continued prayers...after yesterday, I'm aware that things could be a LOT worse on a day to day basis if Elizabeth was in more pain, or was fussy for other reasons.
Love you all,
Sara (for all of us)
Email Update Sent August 29, 2006: "Homeward Bound"
Yes, we are headed home today! 3 weeks and 4 days after checking in, we're checking out and couldn't be happier. Elizabeth got her last set of labs drawn this morning and handled it like a champ, and now we're just waiting for the team to get together all the things we'll need for going home. Mostly prescriptions (she'll go home on 4 meds) and supplies for her tube-feeds. We won't be going far (I think our departure was helped along by the fact that Matt is an MD and we live across the street) but being in our home will be wonderful.
She's going home with the clot and the vericies (sp?) and the plan is to keep her stable by using diuretics to keep fluid off. She's taking her goal feeds so she SHOULD gain weight (Please Lord!) and they'll watch her closely to try to determine if the weight is "good" or not. She'll be getting food 24 hours a day, (the best way to help her gain) so leaving the house will be tricky :) but you can pray that I'll go home with a can do attitude.
Thanks for your continued prayers and the meals and the cards and emails and the gifts and everything you're doing for us....
YOU have helped us survive this...
We love you all,
Sara
Email Update Sent August 25, 2006: "Daily Bread"
A line in the Lords Prayer allows us to ask God to give us "our daily bread." I've heard lots of sermons on this subject and have often asked for that very thing. I don't know that I have ever experienced it so profoundly as I am now.
Coming home is wonderful. Soft sheets for sleeping, clean floors for walking & playing (despite what you might think, hospital floors are NOT clean), NO vital checks at 2 am, no lab draws, no nap interruptions. Home is good. But being home by myself is a little complicated, and has given me the chance to reflect on what turned out to be a truly blessed hospital experience. One in which we experienced daily provision - probably the answer to some of your prayers! While we're grateful to be discharged (no doubt our health insurance would offer a hearty "AMEN!" about now) I'm so thankful for so many things about the last few weeks (and no, I'm not on drugs, it really was this good):
- The MIRACLE of Matt's schedule. Had you asked us ahead of time, in which month of this coming year we would LEAST like to have Elizabeth hospitalized, we would have picked August (maybe tying it with September). Matt's rotation this month is notoriously insane, lots of patients, tons of work, tons of late nights...really bad. Well to reiterate what he's already told you, for the greater part of the month, he only had ONE patient...and near the end he got 1 or 2 more! That fact alone allowed him to be available (both physically and emotionally) at the drop of a hat to support Elizabeth and I, to talk with Dr.s and to walk WITH us through this hospitalization, all while still working full time, two floors above us. The miracle of this was driven home by the fact that all heck broke loose (translation: lots of admissions of complicated patients resulting in lots of work!) the same afternoon we were discharged! Matt's still at work as I type and we are in awe that God held back the chaos to protect our family. Praise God!
- A fantastic Clinical Fellow, who was attentive, communicative, compassionate, available and overall, our favorite person on Elizabeth's team. If your child has to have a complicated medical problem, and you have to live in the hospital, the staff can greatly impact your life. Dr. Pickens was a true blessing.
- Family available at the drop of a hat...My mom living with us for most of the hospitalization, Matt's parents up most days and any time we needed them, always bringing goodies to bless us.
- Elizabeth actually reached THREE developmental milestones while in the hospital! This is practically unheard of. It just doesn't happen...kids regress while in the hospital...and while she's physically weaker (back to back UTI, pneumonia, bacterial peritonitis and a portal vein thrombosis will do that to you!) her mind is sharp as a tack. She's waving hello and goodbye, she's giving high fives, she's making new vowel sounds and she's used the sign language sign for "more" appropriately! (though not consistently yet) :) I actually think all of the social stimulation of nurses and doctors and med students (need I go on?), not to mention friends and family, was GOOD for Elizabeth.
So we are home, and the daily bread is continuing to arrive in the form of meals and care packages, phone calls and emails from friends which really encourage me, and I'm feeling a boost in that "can do" attitude I asked you to pray for.
Please keep praying...
*Matt's schedule is now insane and I'm alone a lot now, so I have to fight feeling overwhelmed.
*Elizabeth been puking more since she came home...don't know what that's about, but she needs to keep her calories down and grow!
Thank you thank you. you are part of our daily Bread...we are so grateful.
Love,
Sara (for all of us)
Monday, July 31, 2006
Elizabeth Archives - July 2006
July 2006 Email Updates
Email Update Sent July 15, 2006:
Dear Friends and Family,
Elizabeth turned 9 months old yesterday, and today we'd hoped to send a chipper update on all the progress she's been making. Unfortunately, she started getting sick overnight, and this morning, required hospitalization for a probable pneumonia. Last night, she started with a new hacking cough and a low grade fever. This morning, she looked great initially, but about 11am began having lots of trouble breathing (her lips, fingers and toes started turning dusky blue), started shaking all over, and scarily, stopped crying or responding to us. Thankfully, this turn for the worse occurred while we were in the car, returning from some errands. We were just a mile from the UC ER and able to get her there safely.
The staff acted very quickly to get her the extra oxygen and antibiotics her body needed, especially since her fever was almost 104.5 F! That first dose of antibiotics and some fever-reducers have really helped and she is doing MUCH better now. Elizabeth's doctors think she'll need to be in the hospital 24-48 hours for observation, putting our trip to Memphis for a family reunion in jeopardy (we're supposed to fly out on Monday AM).
Please be praying that:
1) This is just a pneumonia and that the bacteria haven't spread to her blood stream (which would lengthen her antibiotic course to weeks!).
2) she recovers quickly and without any hospital complications this time around.
3) we'll have wisdom about whether and when to go to Memphis.
4) we'll get a kind airline service agent that will allow us to rebook our tickets without re-purchasing.
Thank you for interceding on our behalves. We'll send out that more upbeat report once Elizabeth is home again.
-Matt
Email Update Sent July 16, 2006:
Talk about miraculous turn-arounds! Yesterday at noon, Elizabeth was on the verge of being admitted to the ICU. Today at noon, she was in her stroller, going for a walk around the neighborhood! Your prayers truly made a difference in getting her well. The pediatrician who released us from the hospital is convinced that this was NOT a pneumonia, but rather the very high fever that caused her system to react so badly. Her blood work looked great and all her cultures have been negative, supporting his theory.
Even better, she hasn't had any fever since going to the hospital. If she stays that way through the night, she'll be fine to travel. So for the time being, the trip to Memphis is ON. Good thing, too- we had started researching ticket changes and American Airlines was being less than customer service oriented in the process ("I'm sorry, but we don't make exceptions, even for medical emergencies").
Unfortunately for you, the last minute return to leaving on time means I need to pack instead of updating the website with new photos. When we return next week, we'll definitely get that together.
Thank you for your prayers!
Matt, Sara and Elizabeth
Email Update Sent July 30, 2006:
Dear friends and family,
Thanks for your response to our urgent update two weeks ago. Elizabeth continued to improve and was an absolute rock star on the plane and all throughout our time in Memphis. We had a wonderful time with family and felt so grateful that we were able to be there for the entire time.
A few highlights:
*Elizabeth enjoyed some Memphis BBQ at the famous Rendezvous and made her first trip into a swimming pool.
*She ate butterbeans and black eyed peas and LOVED them, and kept opening her mouth so I could give her more. This was a first and warmed my heart. I guess she's a true southern girl at heart.
Unfortunately, part of that yummy southern meal got into her lungs and she developed an aspiration pneumonia on Sunday night and a high fever by Monday morning so we had to make a detour to the ER at Le Bonheur Children's Hospital before being discharged hours before our flight back to SF. To make a long and exhausting story very short, We feel like God prevented the very kind attending in Memphis from seeing the pneumonia on her chest x-ray, so that we could get home and deal with it all on our own turf. We've had to tinker with her medications but we've found one that doesn't make her puke and she's finally started acting like herself again.
Tomorrow is the last day of Matt's vacation. Elizabeth and I have loved having Matt around all the time....so in about 36 hours, we'll BOTH be going through withdrawals!
We hope you're all surviving the heat! I'm embarrassed to admit it, but we're wearing sweats and enjoying an overcast week here in SF. But we're turning off all our lights, trying to conserve energy for the rest of you!
Blessings,
Sara (for all three of us)
Friday, June 30, 2006
Elizabeth Archives - June 2006
Week 35 (June 9 to June 15) Update
Email Update Sent June 18, 2006:
Hello Everyone,
Elizabeth turned 8 months old this week, meaning she's been out of the hospital for exactly 6 months. We wanted to let you know how things have been going.
Overall, Elizabeth continues to thrive. Everyday she's growing (almost 15 lbs. at her last appointment) & learning new tricks (her current fav's are blowing raspberries, playing with her feet, waving "Hi", saying "dadada" to anything and everything, and sitting up for some good long stretches with minimal support). She is social, happy and loves to sing while we take walks in the park, talk on the phone and basically do anything that I'm doing. This last week, Matt was working on the pediatric service and went to check on a patient in the Cardiac ICU- the same floor where Elizabeth spent her first 2 months. Instead of getting work done, he was inundated by nurses curious to hear all about Elizabeth's progress. Eventually, he was forced to call me and I have me bring Elizabeth up for show-and-tell. Everyone was thrilled with how healthy, happy and BIG she's become. It's really nice to stop every once in a while to remember how far Elizabeth has come. And we praise God for how far we've come.
Please continue to pray for:
Elizabeth's feeding: Miraculously, she's gaining great weight, despite never eating her "goal" amount, and continuing to puke intermittently. She has decided that she's not a fan of solid foods, (officially called a "feeding aversion" and we're starting some feeding therapy to help her learn to like to eat. Pray that she'll lose her distaste for anything on a spoon.
Elizabeth's muscle tone: Her floppy muscles are getting stronger, and she can now sit unassisted. She's just started physical therapy to try and prevent scoliosis and to give her the strength she'll need to roll-over, crawl and eventually walk.
The good news is I'm learning how to let go of all the things I cannot control, all the circumstances I cannot change. I'm learning to practice contentment, thankfulness and joy in the midst of daily life. It has only been by the grace of God that I feel truly at peace about the pace of Elizabeth's progress. I'm doing a better job of enjoying where Elizabeth is, and choosing not to fear what is ahead & unknown. (Does this sound familiar? have I been here before? Well, I feel like I'm making progress...and that's a relief.) Thank you for your prayers!
Love,
Sara (for all of us)
Wednesday, May 31, 2006
Elizabeth Archives - May 2006
Week 29 (April 28 to May 4) Update:
Sent on May 3, 2006:
Hi Everyone,
The last few weeks have been busy. Here are a few highlights from Sara...
Elizabeth was the belle of the ball...well, excluding the bride of course...at her Uncle Philip's wedding. We had a wonderful time introducing her to family and friends and she only made a few comments during Grandpa Sid's wedding message!
What we thought was a cold turned out to be a simple case of teething! This year on my birthday she gave me two teeth...a beautiful sight, and has since returned to her cheerful self.
Finally, she's growing and changing every day and provides us with countless opportunities to whip out the camera. She turns the pages when I read to her, and has moved from gurgling to blowing bubbles with her rice-cereal...not an easy trick! We're still working with her to help her gain the strength she'll need to eventually sit up. This is slow going but hopefully will be sped up with the aide of some Physical and Occupational Therapists that we'll meet with in the near future.
To update you on our prayer requests, last week we found out that Elizabeth will need to have another surgery to repair her hernia. Because of her history (lots of complications following her previous surgeries), what should be an outpatient operation, will have to take place at the hospital, where Elizabeth will be intubated again and admitted for 24 hours. The good news is, the surgery remains routine and complications aren't expected. Additionally, while they're fixing her right side, they can also go in and "shore up" her left side since many babies who have 1 hernia eventually develop a 2nd one.
This saves us from a future surgery and hopefully any more hernias! Please pray that the surgery can take place laproscopically and that she has no complications (a la lymphatic fluid drainage) like her previous surgeries.
The surgery will take place on May 15th, Matt's last day of work before a two week vacation. We've been planning to have some desperately needed family time on the coast, but we'll just wait and see how Elizabeth's recovery goes. Would you join us in praying that God will make a way for Elizabeth to heal quickly so that the three of us can get away for some respite?
Her feeding is...well, mostly the same. I pray often that God will multiply the nutrients she's getting and keep her growing and just give me the high sign when I don't need to stress about how much she's taking. I'm learning that my stress doesn't deliver food into her, so I'm getting better at rolling with the punches. After a visit to the feeding clinic, we're re-introducing solids and though she's still not a fan, I have more confidence that I'm not going to push her over the edge into hating food by pressing her to eat. If she can gain weight on the volume she's taking (about 60% of her goal) then we can relax a bit. We'll find out how she's doing at her pre-op appointment next Friday.
Thanks so much for your continued prayers.
Love,
Sara (for all three of us)
Week 31 (May 12-18) Update
Email Update sent May 16, 2006:
Well, we're home, and still picking up the pieces after only one day in the hospital. Once again, I realized just HOW much of a blessing it was that we lived only 1 block from the hospital through Elizabeth's time in the ICU...after last night, I don't think I could have survived sleeping over at the hospital night after night on top of all the other stress those first two months. Elizabeth came through surgery beautifully. She's still a little puffy (that's normal) and she's cranky and totally out of whack with her eating and sleeping (also normal) so we're going to try to get her a little more settled before we think about leaving the house for some family time. Thanks for your prayers. Elizabeth's pleasant demeanor leading up to the surgery was nothing short of a miracle. Se went 7 hours without food (no pacifier either) and even though our surgery was delayed an hour, she was delightful 'till the very end. THAT we can only thank God for.
Now we all desperately need sleep.
Love,
Sara (for all of us)
Sent on May 3, 2006:
Hi Everyone,
The last few weeks have been busy. Here are a few highlights from Sara...
Elizabeth was the belle of the ball...well, excluding the bride of course...at her Uncle Philip's wedding. We had a wonderful time introducing her to family and friends and she only made a few comments during Grandpa Sid's wedding message!
What we thought was a cold turned out to be a simple case of teething! This year on my birthday she gave me two teeth...a beautiful sight, and has since returned to her cheerful self.
Finally, she's growing and changing every day and provides us with countless opportunities to whip out the camera. She turns the pages when I read to her, and has moved from gurgling to blowing bubbles with her rice-cereal...not an easy trick! We're still working with her to help her gain the strength she'll need to eventually sit up. This is slow going but hopefully will be sped up with the aide of some Physical and Occupational Therapists that we'll meet with in the near future.
To update you on our prayer requests, last week we found out that Elizabeth will need to have another surgery to repair her hernia. Because of her history (lots of complications following her previous surgeries), what should be an outpatient operation, will have to take place at the hospital, where Elizabeth will be intubated again and admitted for 24 hours. The good news is, the surgery remains routine and complications aren't expected. Additionally, while they're fixing her right side, they can also go in and "shore up" her left side since many babies who have 1 hernia eventually develop a 2nd one.
This saves us from a future surgery and hopefully any more hernias! Please pray that the surgery can take place laproscopically and that she has no complications (a la lymphatic fluid drainage) like her previous surgeries.
The surgery will take place on May 15th, Matt's last day of work before a two week vacation. We've been planning to have some desperately needed family time on the coast, but we'll just wait and see how Elizabeth's recovery goes. Would you join us in praying that God will make a way for Elizabeth to heal quickly so that the three of us can get away for some respite?
Her feeding is...well, mostly the same. I pray often that God will multiply the nutrients she's getting and keep her growing and just give me the high sign when I don't need to stress about how much she's taking. I'm learning that my stress doesn't deliver food into her, so I'm getting better at rolling with the punches. After a visit to the feeding clinic, we're re-introducing solids and though she's still not a fan, I have more confidence that I'm not going to push her over the edge into hating food by pressing her to eat. If she can gain weight on the volume she's taking (about 60% of her goal) then we can relax a bit. We'll find out how she's doing at her pre-op appointment next Friday.
Thanks so much for your continued prayers.
Love,
Sara (for all three of us)
Week 31 (May 12-18) Update
Email Update sent May 16, 2006:
Well, we're home, and still picking up the pieces after only one day in the hospital. Once again, I realized just HOW much of a blessing it was that we lived only 1 block from the hospital through Elizabeth's time in the ICU...after last night, I don't think I could have survived sleeping over at the hospital night after night on top of all the other stress those first two months. Elizabeth came through surgery beautifully. She's still a little puffy (that's normal) and she's cranky and totally out of whack with her eating and sleeping (also normal) so we're going to try to get her a little more settled before we think about leaving the house for some family time. Thanks for your prayers. Elizabeth's pleasant demeanor leading up to the surgery was nothing short of a miracle. Se went 7 hours without food (no pacifier either) and even though our surgery was delayed an hour, she was delightful 'till the very end. THAT we can only thank God for.
Now we all desperately need sleep.
Love,
Sara (for all of us)
Sunday, April 30, 2006
Elizabeth Archives - April 2006
Week 27 (April 14-20) Update:
Sent on April 19, 2006
Dear Friends and Family,
We hope all of you had a wonderful Easter. Elizabeth certainly did! She celebrated by sitting attentively through the entire church service (Pastor Paul was in rare form) and later donned bunny ears to everyone’s delight. We managed to keep Grandma and Grandpa Harms from sneaking her chocolate. And it’s a good thing, too- because she has just come down with her very first cold. Being hospital-bound and then under house-arrest had allowed us to avoid most germs until now. She’s handling the sniffles like a champ, and now that we’ve established that Tylenol makes her loopy, we’re sticking with the Baby Motrin! This week, Elizabeth’s uncle Philip gets married, and we’re looking forward to introducing her to many on Matt’s side of the family.
In other news, last Friday, Elizabeth Turned 6 Months Old! (And yes, that means that an un-named Grandpa turned 55 years and 6 months old…but who’s counting?) It is amazing to look back over the last 26 weeks and see how far God has brought our little family- from the joy (and scares) of Elizabeth’s birth and our fears of losing her in the ICU, to the daily challenges of raising her at home. While He hasn’t always answered our prayers the way we’ve wanted, He has been faithful to sustain us through it ALL.
A lot has changed in 6 months, including the focus of our prayers. To give you a sense of what’s been going more recently, and the challenges we still face, here’s an update to the list of prayer requests that has been on the website (including answered prayers and new issues).
For those of you who don’t have time to read all the details, the short story is – Overall, Elizabeth is doing well at home. She’s growing (12 lbs. 13 oz. as of today!), learning new skills like blowing bubbles, peek-a-boo and rolling from her belly to her back. She is an absolute angel. She struggles to meet her nutritional goals and the whole “GI/Nutrition-arena” is a daily source of stress for Sara as she tries to encourage Elizabeth to eat. We’re still stuck in a 1-puke-a-day routine, but her growth encouragingly continues on track. The most recent round of doctors’ appointments revealed several areas of possible concern with her heart & muscle tone (see below). We are again reminded that unless God chooses to heal her completely, Elizabeth’s health will likely always be complicated. We need grace to face the unknown future with hope and courage.
Now for the nitty-gritty…
Elizabeth’s Heart: When the surgeon repaired the abnormal section of her aorta, he was unable to reach the furthest section of narrowing. We are praising God that her last echocardiogram revealed that this last section of narrowing has moved to a more favorable location- where it is less likely to cause problems and be easier to repair if need be. Unfortunately, that same echocardiogram showed two previously unseen abnormalities in Elizabeth’s heart, a thickened/stiff mitral valve and a small hole between the right and left ventricle (allowing small amounts of unoxygenated blood to bypass the lungs and directly enter the body’s circulation). Neither abnormality is causing symptoms currently, but will be followed very closely by her cardiologist. If either becomes a problem, open heart surgery would likely be required. Pray that these abnormalities would resolve spontaneously.
Elizabeth’s Inguinal Hernia: “What hernia?” you might be asking. We just discovered it last week during a Daddy-diaper change/physical examination (it’s hard to leave my job at work sometimes). It almost always needs to be repaired surgically. We are crushed at the thought of subjecting Elizabeth to yet another surgery! Just this month, Elizabeth’s age in months was finally larger than the number of surgeries she’s had (five!). Pray that the hernia would disappear (and quickly- our appointment with the surgeon is in 1 week).
Elizabeth's Infant Development: Two months on her back in the ICU and a poorly formed cerebellum have definitely slowed some areas of Elizabeth's development. Her social interaction, language, and fine motor development are "on-track." She is the smiley-est baby we’ve ever met and loves to sing/gurgle/blow spit bubbles. She has also learned to roll from her tummy to her back. However, her gross motor strength, head control and "tone" are behind. We have a physical therapist from the March of Dimes working with her to improve this area. Pray that her muscle tone will develop and that she will rapidly gain the strength she needs to keep her head up, roll over, sit up and eventually walk.
Elizabeth's ability to feed: Her suck and swallow reflexes were initially damaged by nerve injury during her surgery and by disuse while hospitalized. Since coming home, those problems have completely resolved. In fact, last week we introduced her to rice cereal. She seems to hate the taste and texture, but has already figured out how to swallow it down.
Elizabeth’s growth: Despite not eating the amount the nutritionist has set as her “goal,” Elizabeth continues to gain weight. Her legs have gotten a bit chubbier and she’s finally fitting into those 3 month-old clothes. If she continues to gain weight for 1 more month, her feeding tube will be able to come out! Praise God that we haven’t had a single one of the complications feeding tubes can produce (infection, skin breakdown, intestinal blockage, popping out, etc). Despite all the growth, we have to practically force Elizabeth to eat. Unless she is completely starving, she is almost completely disinterested in food- possibly due to the nasty taste of the special formula she started with. As a result, Sara spends too much of her day coaxing food into Elizabeth, and then fighting to help keep it down. Please pray that we would find a formula that Elizabeth actually enjoys, something that she finds both tasty and satisfying.
Elizabeth's reflux problems: Although her reflux problems were very severe initially and led to frequent vomiting, things have improved greatly in this area. We have even been able to reduce the number of reflux medications she requires from three to just one! Though she still vomits several times weekly, it no longer blocks off her airway. Pray that her reflux will continue to diminish and that her vomiting will cease entirely.
Elizabeth's voice: from the same nerve damage during surgery, Elizabeth's vocal cords didn't function properly initially, and we feared they might be permanently paralyzed. Their function continues to improve, and now she makes the cutest coos and babbling I’ve ever heard. Taking the bad with the good, she also cries much louder! We are so grateful that God has healed this area.
Elizabeth's Cerebellum: Somewhat lost in the emergency of her heart surgery is the fact that Elizabeth's cerebellum and adjacent brainstem region are incompletely formed. Continue to pray that her brainstem and cerebellum will continue developing past their normal time or that other areas of her brain will take over the vital functions and minimize any potential symptoms.
Elizabeth's Turner Syndrome: Turner syndrome is a condition caused by missing one of the usually-paired X chromosomes. How and why it happens is unknown. The end result includes many of the abnormalities Elizabeth has already suffered from. But there is a very long list of potential effects that could occur as she ages. These include poor growth, hormonal imbalances and learning disabilities, to name a few. Ask God to limit the boundaries of Turner Syndrome in her life, preventing it from doing any more damage than it already has. If you are interested in learning more about Turner Syndrome, check out www.turner-syndrome-us.org.
Thanks for hanging in there with us for the long haul. We covet and appreciate your prayers and support.
Much Love,
The Harms
Friday, March 31, 2006
Elizabeth Archives - March 2006
Week 22 (Mar 10 to Mar 16) Update:
Sent Mar 16, 2006
On Tuesday, March 14th, Elizabeth Joy celebrated her 5 month birthday in style- she got another immunization and had her first vomiting in 10 days! Not quite the cake and candles of years to come, but it's a start. Lest you think it's "all work and no play" around here...we've included some pictures. She's growing like a weed. She recently weighed in at 11 lbs. 3.8 oz! She's finally growing into her clothes! :)
The good news is, despite her "Birthday-puke", she went 10 days without a puke, and has since resumed her puke-free schedule. It seems like she is growing out of it just like the Doctors thought she would. All we can say is, Praise God!
We're off to visit Sara's parents in Clovis this weekend and look forward to introducing Elizabeth to many of her friends in the Valley.
Have a great weekend~
Love,
Matt & Sara
Week 24 (March 24 to March 30) Update:
Sent on March 26, 2006:
This morning, Sara and I threw Elizabeth into the Baby-Bjorn and went for a walk. Our trek began by walking up to UCSF, a path we took several times per day during Elizabeth's hospitalization. While our original purpose was to stop by my office mailbox, we ended up dropping into the ICU to say hello. Several of our favorite nurses happened to be on duty and were thrilled to see her progress. Each of them commented on her increasing size, her cheerful smiles and (surprisingly), how well-adjusted we seemed as parents!
Returning to the places that bore witness to Elizabeth's pain and close-calls was a necessary reminder of all God has done for us. Several times during that season, it seemed like we might not survive the stress. And yet God saw us through, supported by the faithful service and prayers of our family and friends. The fact that Elizabeth is growing, developing and thriving at home is further proof of God's mercy. And although each day continues to have its little struggles, evidence of His faithfulness is all around.
Elizabeth is eating like a champ (drinking 100 ml at time, up from those frustrating days of 5)! The physical therapist is thrilled with her strength progress, and it looks like Elizabeth might be rolling over any day now. She continues to cooing and sing, but just three days ago started laughing! What a delightful sound...
Love you all,
Matt
Week 27 (April 14-20) Update:
Sent on April 19, 2006
Dear Friends and Family,
We hope all of you had a wonderful Easter. Elizabeth certainly did! She celebrated by sitting attentively through the entire church service (Pastor Paul was in rare form) and later donned bunny ears to everyone’s delight. We managed to keep Grandma and Grandpa Harms from sneaking her chocolate. And it’s a good thing, too- because she has just come down with her very first cold. Being hospital-bound and then under house-arrest had allowed us to avoid most germs until now. She’s handling the sniffles like a champ, and now that we’ve established that Tylenol makes her loopy, we’re sticking with the Baby Motrin! This week, Elizabeth’s uncle Philip gets married, and we’re looking forward to introducing her to many on Matt’s side of the family.
In other news, last Friday, Elizabeth Turned 6 Months Old! (And yes, that means that an un-named Grandpa turned 55 years and 6 months old…but who’s counting?) It is amazing to look back over the last 26 weeks and see how far God has brought our little family- from the joy (and scares) of Elizabeth’s birth and our fears of losing her in the ICU, to the daily challenges of raising her at home. While He hasn’t always answered our prayers the way we’ve wanted, He has been faithful to sustain us through it ALL.
A lot has changed in 6 months, including the focus of our prayers. To give you a sense of what’s been going more recently, and the challenges we still face, here’s an update to the list of prayer requests that has been on the website (including answered prayers and new issues).
For those of you who don’t have time to read all the details, the short story is – Overall, Elizabeth is doing well at home. She’s growing (12 lbs. 13 oz. as of today!), learning new skills like blowing bubbles, peek-a-boo and rolling from her belly to her back. She is an absolute angel. She struggles to meet her nutritional goals and the whole “GI/Nutrition-arena” is a daily source of stress for Sara as she tries to encourage Elizabeth to eat. We’re still stuck in a 1-puke-a-day routine, but her growth encouragingly continues on track. The most recent round of doctors’ appointments revealed several areas of possible concern with her heart & muscle tone (see below). We are again reminded that unless God chooses to heal her completely, Elizabeth’s health will likely always be complicated. We need grace to face the unknown future with hope and courage.
Now for the nitty-gritty…
Elizabeth’s Heart: When the surgeon repaired the abnormal section of her aorta, he was unable to reach the furthest section of narrowing. We are praising God that her last echocardiogram revealed that this last section of narrowing has moved to a more favorable location- where it is less likely to cause problems and be easier to repair if need be. Unfortunately, that same echocardiogram showed two previously unseen abnormalities in Elizabeth’s heart, a thickened/stiff mitral valve and a small hole between the right and left ventricle (allowing small amounts of unoxygenated blood to bypass the lungs and directly enter the body’s circulation). Neither abnormality is causing symptoms currently, but will be followed very closely by her cardiologist. If either becomes a problem, open heart surgery would likely be required. Pray that these abnormalities would resolve spontaneously.
Elizabeth’s Inguinal Hernia: “What hernia?” you might be asking. We just discovered it last week during a Daddy-diaper change/physical examination (it’s hard to leave my job at work sometimes). It almost always needs to be repaired surgically. We are crushed at the thought of subjecting Elizabeth to yet another surgery! Just this month, Elizabeth’s age in months was finally larger than the number of surgeries she’s had (five!). Pray that the hernia would disappear (and quickly- our appointment with the surgeon is in 1 week).
Elizabeth's Infant Development: Two months on her back in the ICU and a poorly formed cerebellum have definitely slowed some areas of Elizabeth's development. Her social interaction, language, and fine motor development are "on-track." She is the smiley-est baby we’ve ever met and loves to sing/gurgle/blow spit bubbles. She has also learned to roll from her tummy to her back. However, her gross motor strength, head control and "tone" are behind. We have a physical therapist from the March of Dimes working with her to improve this area. Pray that her muscle tone will develop and that she will rapidly gain the strength she needs to keep her head up, roll over, sit up and eventually walk.
Elizabeth's ability to feed: Her suck and swallow reflexes were initially damaged by nerve injury during her surgery and by disuse while hospitalized. Since coming home, those problems have completely resolved. In fact, last week we introduced her to rice cereal. She seems to hate the taste and texture, but has already figured out how to swallow it down.
Elizabeth’s growth: Despite not eating the amount the nutritionist has set as her “goal,” Elizabeth continues to gain weight. Her legs have gotten a bit chubbier and she’s finally fitting into those 3 month-old clothes. If she continues to gain weight for 1 more month, her feeding tube will be able to come out! Praise God that we haven’t had a single one of the complications feeding tubes can produce (infection, skin breakdown, intestinal blockage, popping out, etc). Despite all the growth, we have to practically force Elizabeth to eat. Unless she is completely starving, she is almost completely disinterested in food- possibly due to the nasty taste of the special formula she started with. As a result, Sara spends too much of her day coaxing food into Elizabeth, and then fighting to help keep it down. Please pray that we would find a formula that Elizabeth actually enjoys, something that she finds both tasty and satisfying.
Elizabeth's reflux problems: Although her reflux problems were very severe initially and led to frequent vomiting, things have improved greatly in this area. We have even been able to reduce the number of reflux medications she requires from three to just one! Though she still vomits several times weekly, it no longer blocks off her airway. Pray that her reflux will continue to diminish and that her vomiting will cease entirely.
Elizabeth's voice: from the same nerve damage during surgery, Elizabeth's vocal cords didn't function properly initially, and we feared they might be permanently paralyzed. Their function continues to improve, and now she makes the cutest coos and babbling I’ve ever heard. Taking the bad with the good, she also cries much louder! We are so grateful that God has healed this area.
Elizabeth's Cerebellum: Somewhat lost in the emergency of her heart surgery is the fact that Elizabeth's cerebellum and adjacent brainstem region are incompletely formed. Continue to pray that her brainstem and cerebellum will continue developing past their normal time or that other areas of her brain will take over the vital functions and minimize any potential symptoms.
Elizabeth's Turner Syndrome: Turner syndrome is a condition caused by missing one of the usually-paired X chromosomes. How and why it happens is unknown. The end result includes many of the abnormalities Elizabeth has already suffered from. But there is a very long list of potential effects that could occur as she ages. These include poor growth, hormonal imbalances and learning disabilities, to name a few. Ask God to limit the boundaries of Turner Syndrome in her life, preventing it from doing any more damage than it already has. If you are interested in learning more about Turner Syndrome, check out www.turner-syndrome-us.org.
Thanks for hanging in there with us for the long haul. We covet and appreciate your prayers and support.
Much Love,
The Harms
Sent Mar 16, 2006
On Tuesday, March 14th, Elizabeth Joy celebrated her 5 month birthday in style- she got another immunization and had her first vomiting in 10 days! Not quite the cake and candles of years to come, but it's a start. Lest you think it's "all work and no play" around here...we've included some pictures. She's growing like a weed. She recently weighed in at 11 lbs. 3.8 oz! She's finally growing into her clothes! :)
The good news is, despite her "Birthday-puke", she went 10 days without a puke, and has since resumed her puke-free schedule. It seems like she is growing out of it just like the Doctors thought she would. All we can say is, Praise God!
We're off to visit Sara's parents in Clovis this weekend and look forward to introducing Elizabeth to many of her friends in the Valley.
Have a great weekend~
Love,
Matt & Sara
Week 24 (March 24 to March 30) Update:
Sent on March 26, 2006:
This morning, Sara and I threw Elizabeth into the Baby-Bjorn and went for a walk. Our trek began by walking up to UCSF, a path we took several times per day during Elizabeth's hospitalization. While our original purpose was to stop by my office mailbox, we ended up dropping into the ICU to say hello. Several of our favorite nurses happened to be on duty and were thrilled to see her progress. Each of them commented on her increasing size, her cheerful smiles and (surprisingly), how well-adjusted we seemed as parents!
Returning to the places that bore witness to Elizabeth's pain and close-calls was a necessary reminder of all God has done for us. Several times during that season, it seemed like we might not survive the stress. And yet God saw us through, supported by the faithful service and prayers of our family and friends. The fact that Elizabeth is growing, developing and thriving at home is further proof of God's mercy. And although each day continues to have its little struggles, evidence of His faithfulness is all around.
Elizabeth is eating like a champ (drinking 100 ml at time, up from those frustrating days of 5)! The physical therapist is thrilled with her strength progress, and it looks like Elizabeth might be rolling over any day now. She continues to cooing and sing, but just three days ago started laughing! What a delightful sound...
Love you all,
Matt
Week 27 (April 14-20) Update:
Sent on April 19, 2006
Dear Friends and Family,
We hope all of you had a wonderful Easter. Elizabeth certainly did! She celebrated by sitting attentively through the entire church service (Pastor Paul was in rare form) and later donned bunny ears to everyone’s delight. We managed to keep Grandma and Grandpa Harms from sneaking her chocolate. And it’s a good thing, too- because she has just come down with her very first cold. Being hospital-bound and then under house-arrest had allowed us to avoid most germs until now. She’s handling the sniffles like a champ, and now that we’ve established that Tylenol makes her loopy, we’re sticking with the Baby Motrin! This week, Elizabeth’s uncle Philip gets married, and we’re looking forward to introducing her to many on Matt’s side of the family.
In other news, last Friday, Elizabeth Turned 6 Months Old! (And yes, that means that an un-named Grandpa turned 55 years and 6 months old…but who’s counting?) It is amazing to look back over the last 26 weeks and see how far God has brought our little family- from the joy (and scares) of Elizabeth’s birth and our fears of losing her in the ICU, to the daily challenges of raising her at home. While He hasn’t always answered our prayers the way we’ve wanted, He has been faithful to sustain us through it ALL.
A lot has changed in 6 months, including the focus of our prayers. To give you a sense of what’s been going more recently, and the challenges we still face, here’s an update to the list of prayer requests that has been on the website (including answered prayers and new issues).
For those of you who don’t have time to read all the details, the short story is – Overall, Elizabeth is doing well at home. She’s growing (12 lbs. 13 oz. as of today!), learning new skills like blowing bubbles, peek-a-boo and rolling from her belly to her back. She is an absolute angel. She struggles to meet her nutritional goals and the whole “GI/Nutrition-arena” is a daily source of stress for Sara as she tries to encourage Elizabeth to eat. We’re still stuck in a 1-puke-a-day routine, but her growth encouragingly continues on track. The most recent round of doctors’ appointments revealed several areas of possible concern with her heart & muscle tone (see below). We are again reminded that unless God chooses to heal her completely, Elizabeth’s health will likely always be complicated. We need grace to face the unknown future with hope and courage.
Now for the nitty-gritty…
Elizabeth’s Heart: When the surgeon repaired the abnormal section of her aorta, he was unable to reach the furthest section of narrowing. We are praising God that her last echocardiogram revealed that this last section of narrowing has moved to a more favorable location- where it is less likely to cause problems and be easier to repair if need be. Unfortunately, that same echocardiogram showed two previously unseen abnormalities in Elizabeth’s heart, a thickened/stiff mitral valve and a small hole between the right and left ventricle (allowing small amounts of unoxygenated blood to bypass the lungs and directly enter the body’s circulation). Neither abnormality is causing symptoms currently, but will be followed very closely by her cardiologist. If either becomes a problem, open heart surgery would likely be required. Pray that these abnormalities would resolve spontaneously.
Elizabeth’s Inguinal Hernia: “What hernia?” you might be asking. We just discovered it last week during a Daddy-diaper change/physical examination (it’s hard to leave my job at work sometimes). It almost always needs to be repaired surgically. We are crushed at the thought of subjecting Elizabeth to yet another surgery! Just this month, Elizabeth’s age in months was finally larger than the number of surgeries she’s had (five!). Pray that the hernia would disappear (and quickly- our appointment with the surgeon is in 1 week).
Elizabeth's Infant Development: Two months on her back in the ICU and a poorly formed cerebellum have definitely slowed some areas of Elizabeth's development. Her social interaction, language, and fine motor development are "on-track." She is the smiley-est baby we’ve ever met and loves to sing/gurgle/blow spit bubbles. She has also learned to roll from her tummy to her back. However, her gross motor strength, head control and "tone" are behind. We have a physical therapist from the March of Dimes working with her to improve this area. Pray that her muscle tone will develop and that she will rapidly gain the strength she needs to keep her head up, roll over, sit up and eventually walk.
Elizabeth's ability to feed: Her suck and swallow reflexes were initially damaged by nerve injury during her surgery and by disuse while hospitalized. Since coming home, those problems have completely resolved. In fact, last week we introduced her to rice cereal. She seems to hate the taste and texture, but has already figured out how to swallow it down.
Elizabeth’s growth: Despite not eating the amount the nutritionist has set as her “goal,” Elizabeth continues to gain weight. Her legs have gotten a bit chubbier and she’s finally fitting into those 3 month-old clothes. If she continues to gain weight for 1 more month, her feeding tube will be able to come out! Praise God that we haven’t had a single one of the complications feeding tubes can produce (infection, skin breakdown, intestinal blockage, popping out, etc). Despite all the growth, we have to practically force Elizabeth to eat. Unless she is completely starving, she is almost completely disinterested in food- possibly due to the nasty taste of the special formula she started with. As a result, Sara spends too much of her day coaxing food into Elizabeth, and then fighting to help keep it down. Please pray that we would find a formula that Elizabeth actually enjoys, something that she finds both tasty and satisfying.
Elizabeth's reflux problems: Although her reflux problems were very severe initially and led to frequent vomiting, things have improved greatly in this area. We have even been able to reduce the number of reflux medications she requires from three to just one! Though she still vomits several times weekly, it no longer blocks off her airway. Pray that her reflux will continue to diminish and that her vomiting will cease entirely.
Elizabeth's voice: from the same nerve damage during surgery, Elizabeth's vocal cords didn't function properly initially, and we feared they might be permanently paralyzed. Their function continues to improve, and now she makes the cutest coos and babbling I’ve ever heard. Taking the bad with the good, she also cries much louder! We are so grateful that God has healed this area.
Elizabeth's Cerebellum: Somewhat lost in the emergency of her heart surgery is the fact that Elizabeth's cerebellum and adjacent brainstem region are incompletely formed. Continue to pray that her brainstem and cerebellum will continue developing past their normal time or that other areas of her brain will take over the vital functions and minimize any potential symptoms.
Elizabeth's Turner Syndrome: Turner syndrome is a condition caused by missing one of the usually-paired X chromosomes. How and why it happens is unknown. The end result includes many of the abnormalities Elizabeth has already suffered from. But there is a very long list of potential effects that could occur as she ages. These include poor growth, hormonal imbalances and learning disabilities, to name a few. Ask God to limit the boundaries of Turner Syndrome in her life, preventing it from doing any more damage than it already has. If you are interested in learning more about Turner Syndrome, check out www.turner-syndrome-us.org.
Thanks for hanging in there with us for the long haul. We covet and appreciate your prayers and support.
Much Love,
The Harms
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