It looks like she's got a gastro-intestinal bug. Fever and diarhea, and the fever is coming down. She's looking better as well. She's still got the diarhea though. Now instead of worrying about fluid retention, she's getting close to being dehydrated.  She's lost 1/2 of a pound in 24 hours. So far all her test have come back negative - but some haven't in yet.
I got to go shopping with Jessica while Daryl sat with Esther, and then we all went to get dinner and checked the boys into the hotel. It's a nice hotel, so we were pleased about that.
I'm busy holding her so my post will be short tonight
Friday, December 19, 2008
Esther is sick
She lost her IV last night, so they took her to the procedure room to place a new IV. I really needed sleep (I fell alseep sitting up three times yesterday), so I went to bed. When I woke up early this morning, I found out she had spiked a fever during the night. So this morning was lots of fuss over her - 3 failed blood draws, a catheter for a urine sample, and a stool sample (she now has diarhea), and then finally a few minutes ago, they were abe to get a blood draw from her scalp.
Her heart rate was hitting over 200, but the tylenol really helped bring it down. They have an ice pack (not really cold, just cool as it's wrapped in cloth), that we are placing on parts of her and rotating every few minutes.
I finally had to leave to get breakfast as I was beginning to shake from lack of sleep (haven't gotten more than 5 hours a night since we got down here).
Please pray that they will be able to find what's wrong with her, and that it can be treated quickly.
Also, Jessica and I are wearing thin, so Daryl and the rest of the kids are already on their way down to relieve us. I think Jessica will come and sit with Esther so I can take a shower and get a nap. Ideally, we'll get some volunteers to watch Esther to Jessica won't have to do that either.
I'm just numb.
Her heart rate was hitting over 200, but the tylenol really helped bring it down. They have an ice pack (not really cold, just cool as it's wrapped in cloth), that we are placing on parts of her and rotating every few minutes.
I finally had to leave to get breakfast as I was beginning to shake from lack of sleep (haven't gotten more than 5 hours a night since we got down here).
Please pray that they will be able to find what's wrong with her, and that it can be treated quickly.
Also, Jessica and I are wearing thin, so Daryl and the rest of the kids are already on their way down to relieve us. I think Jessica will come and sit with Esther so I can take a shower and get a nap. Ideally, we'll get some volunteers to watch Esther to Jessica won't have to do that either.
I'm just numb.
Thursday, December 18, 2008
Let it snow.....and boy did it ever!
Last night the pacific northwest really got socked with snow! Back home they got 4 inches, Lynden got 6 inches, Concrete got 22 inches. Here in the University District, we were the last to get snow, but it snowed all day, starting at around 3 am. I was up at 5:30 am when a really strange thing happened - there was lightening and thunder! It's a very rare phenomenon but it happened this morning (a thunder-snow storm!).
Here's some photos I took of our snow:
Those poor giraffes! Their frozen solid! LOL!
I've found out that my Uncle Vern's funeral is on Monday at 2 pm, so unless her surgery is bumped (if a child needs surgery suddenly and is more critical than Esther, she can be bumped to later in the day or to the next day).
My sister, Lisa, was able to change her travel plans and will be flying in from California on Sunday. So she'll be spending Sunday with us, and some time with us Monday morning as well. It might work out really well if here surgery goes as planned, I'll be able to give an update before ther funeral, ans many of my relatives will be there and be able to know how Esther's doing.
The hospieal social worker was able to secure accommodations for the kids at home and Daryl for the week. I had looked into hotels, and a nice one was $149/night, and a cheap one was $69/night if we stayed a week. But the social worked got us accommodations at a nice hotel with the first night free, $102 for the second night, and just $30 for each night after that! Praise the Lord! He always provides for our needs!
Plus, since we really don't have any extra money, even the great deal on the hotel would be difficult, but a gal I've gotten to know through my fabric co-op send us some money to us towards the cost of the hotel, and Daryl got a Christmas Bonus today that will cover the remaining cost as well as gas to bring both cars down here! Isn't God incredible!
So, we will all be together in Seattle for a week (all but Jeremy), and that is what I want for Christmas! We are hoping to get our Christmas shopping done on Saturday, and maybe get the RMH room decorated as well. Not sure how much we'll be able to get done.
Here's a photo of my tired little Esther:
They've started Esther on a new medication that makes her sleepy and pretty listless when she's awake. I did get one smile out of here today, and several half smiles, so that was such a sweet thing for me today.
I think our shopping trip wore out the kids, they decided to just hang out at the RMH today, so I didn't see them today. Either that or my "come on up today and we'll have you get your flu shots" made them less desirous of coming to see us! LOL!
I was hoping to go spend part of the day with them, but with the snow, there were no volunteers to hold Esther, so I couldn't get away.
I ran across this video I saw a few months ago - check it out, it's really good - makes me cry every time I watch that part where Christ takes the blows:
http://www.godtube.com/view_video.php?viewkey=ee73e63418003b47d7d5
I've been doing really well today. I haven't been weepy at all, not sure what's different, but I have a hunch a few people are praying for me and that I will be at peace during this storm.
Praise You In This Storm
(click on title to hear song on GodTube.com)
I was sure by now,God, that You would have reached down
and wiped our tears away,
stepped in and saved the day.
But once again, I say amen
and it's still raining
as the thunder rolls
I barely hear You whisper through the rain,
"I'm with you"
and as Your mercy falls
I raise my hands and praise
the God who gives and takes away.
Chorus:
And I'll praise you in this storm
and I will lift my hands
for You are who You are
no matter where I am
and every tear I've cried
You hold in your hand
You never left my side
and though my heart is torn
I will praise You in this storm
I remember when I stumbled in the wind
You heard my cry to You
and raised me up again
my strength is almost gone how can I carry on
if I can't find You
and as the thunder rolls
I barely hear You whisper through the rain
"I'm with you"
and as Your mercy falls
I raise my hands and praise
the God who gives and takes away
Chorus
I lift my eyes onto the hills
where does my help come from?
My help comes from the Lord, the maker of heaven and earth
I lift my eyes onto the hills
where does my help come from?
My help comes from the Lord, the maker of heaven and earth
Here's some photos I took of our snow:
Those poor giraffes! Their frozen solid! LOL!
I've found out that my Uncle Vern's funeral is on Monday at 2 pm, so unless her surgery is bumped (if a child needs surgery suddenly and is more critical than Esther, she can be bumped to later in the day or to the next day).
My sister, Lisa, was able to change her travel plans and will be flying in from California on Sunday. So she'll be spending Sunday with us, and some time with us Monday morning as well. It might work out really well if here surgery goes as planned, I'll be able to give an update before ther funeral, ans many of my relatives will be there and be able to know how Esther's doing.
The hospieal social worker was able to secure accommodations for the kids at home and Daryl for the week. I had looked into hotels, and a nice one was $149/night, and a cheap one was $69/night if we stayed a week. But the social worked got us accommodations at a nice hotel with the first night free, $102 for the second night, and just $30 for each night after that! Praise the Lord! He always provides for our needs!
Plus, since we really don't have any extra money, even the great deal on the hotel would be difficult, but a gal I've gotten to know through my fabric co-op send us some money to us towards the cost of the hotel, and Daryl got a Christmas Bonus today that will cover the remaining cost as well as gas to bring both cars down here! Isn't God incredible!
So, we will all be together in Seattle for a week (all but Jeremy), and that is what I want for Christmas! We are hoping to get our Christmas shopping done on Saturday, and maybe get the RMH room decorated as well. Not sure how much we'll be able to get done.
Here's a photo of my tired little Esther:
They've started Esther on a new medication that makes her sleepy and pretty listless when she's awake. I did get one smile out of here today, and several half smiles, so that was such a sweet thing for me today.
I think our shopping trip wore out the kids, they decided to just hang out at the RMH today, so I didn't see them today. Either that or my "come on up today and we'll have you get your flu shots" made them less desirous of coming to see us! LOL!
I was hoping to go spend part of the day with them, but with the snow, there were no volunteers to hold Esther, so I couldn't get away.
I ran across this video I saw a few months ago - check it out, it's really good - makes me cry every time I watch that part where Christ takes the blows:
http://www.godtube.com/view_video.php?viewkey=ee73e63418003b47d7d5
I've been doing really well today. I haven't been weepy at all, not sure what's different, but I have a hunch a few people are praying for me and that I will be at peace during this storm.
Praise You In This Storm
(click on title to hear song on GodTube.com)
I was sure by now,God, that You would have reached down
and wiped our tears away,
stepped in and saved the day.
But once again, I say amen
and it's still raining
as the thunder rolls
I barely hear You whisper through the rain,
"I'm with you"
and as Your mercy falls
I raise my hands and praise
the God who gives and takes away.
Chorus:
And I'll praise you in this storm
and I will lift my hands
for You are who You are
no matter where I am
and every tear I've cried
You hold in your hand
You never left my side
and though my heart is torn
I will praise You in this storm
I remember when I stumbled in the wind
You heard my cry to You
and raised me up again
my strength is almost gone how can I carry on
if I can't find You
and as the thunder rolls
I barely hear You whisper through the rain
"I'm with you"
and as Your mercy falls
I raise my hands and praise
the God who gives and takes away
Chorus
I lift my eyes onto the hills
where does my help come from?
My help comes from the Lord, the maker of heaven and earth
I lift my eyes onto the hills
where does my help come from?
My help comes from the Lord, the maker of heaven and earth
Wednesday, December 17, 2008
It's just not getting any easier
Today we found out that Esther's surgery is 8 am on Monday.
I also found out that my Uncle Vern is with the Lord - he got there 4 pm yesterday.
I found this photo on my phone - it's a photo of my dear Aunt Marylin holding Esther the week of Thanksgiving. That was the last time I saw my Uncle Vern - I'm so glad I took the time to stop by that day!
They can't schedule his funeral this weekend, so it will be next week. That means, most likely, I won't be able to attend. I'm really bummed about this. He meant a lot to me.
I have also found out that it looks like Jeremy will not be able to come home at all, until at least February, possibly later. He said tonight that he might not even be deploying to Iraq, but Afganistan. Almost every time I've told someone that my son is being deployed to Iraq, they say "at least it's not Afganistan". This was not good news to me.
I keep getting a picture in my mind of a garlic press. You know, you put a garlic clove in it and press it down to press all the oil out of the garlic. Not sure how this metaphors works, but I know I don't want to be that garlic clove, but that's kind of how I feel right now.
Tonight there was a code blue just 5 doors down from me. A code blue means that a child has gone into cardiac arrest. I sat here stunned thinking that some child might be dying just 30 feet from me. I even started to cry imagining what those parents would be going through. I did find out that it was a false alarm, but it's not the first code blue I've heard, and I'm sure it won't be the last. I hope I never heard a code blue called for Esther's bed, but that could be in our future and that is so hard to even think about.
OK, enough depressing talk. Today the kids and I had a great day! The Ronald McDonald House wanted us to make up wish lists for the kids for Christmas, listing things they want and what store to find them in. So we all got to ride on a Metro bendy bus! We rode out to Northgate Mall. None of the little kids have ridden on a bendy bus, so that alone made the day really fun for them!
Here was are on the bus - sorry for the blurry photos, but buses aren't great for taking photos without a flash:
And then the bus driver had a stop for a break (she was ahead of schedule) and offered to take a photo of all of us:
We went to Target, and first of all bought gloves and hats for all the kids and myself, as it was sooooo cold outside, and those items are few and far between in our house, and even fewer came down to Seattle, and none of them were on the kids when we left!
Then we started working out way around the store making the wish lists. It was a lot of fun!
When we got done, we headed out for the bus stop.
We tried to pass the time by singing songs and playing the alphabet song. Then we saw our bus - on the other side of the street! We missed the bus as we were at the wrong bus stop!
So we trecked 1 1/2 block in the freezing wind to the right bus stop, but since we knew it would be nearly 1/2 an hour until the next bus, we made a detour to the Starbucks across the street and we all shared hot cocoa and rice crispy treats ( I had a pepermint mocha twist, yummmm).
Back to the bus stop, and finally the bus came. This time we got to sit in the middle of the bendy bus - the kids had a blast! And the driver was in a hurry so it was much like a roller coaster ride - even knocking Dayton off his seat twice!
Then back to Children's where we hung out together with Esther for about an hour, waiting for the shuttle bus to take them back to RMH. Then things were more quiet around here, and after the volunteer baby holder (this time a daddy) came, I went upstairs for my CPR class. I was the only one there, and since I've already taken the advanced neonatal resusitation course, she made it more of a refresher and turned the 2 hour course into a 45 minute refresher for me! yeah!
Then back to my room with dinner, and a quiet evening of phone calls. Now it's time for me to crash, as Esther's asleep for the night.
BTW Esther had a good day - she was more like her "normal" self - alert when awake, and not fussy, but she was very scroogy with her smiles - I think she only let a couple loose all day, bummer!
I also found out that my Uncle Vern is with the Lord - he got there 4 pm yesterday.
I found this photo on my phone - it's a photo of my dear Aunt Marylin holding Esther the week of Thanksgiving. That was the last time I saw my Uncle Vern - I'm so glad I took the time to stop by that day!
They can't schedule his funeral this weekend, so it will be next week. That means, most likely, I won't be able to attend. I'm really bummed about this. He meant a lot to me.
I have also found out that it looks like Jeremy will not be able to come home at all, until at least February, possibly later. He said tonight that he might not even be deploying to Iraq, but Afganistan. Almost every time I've told someone that my son is being deployed to Iraq, they say "at least it's not Afganistan". This was not good news to me.
I keep getting a picture in my mind of a garlic press. You know, you put a garlic clove in it and press it down to press all the oil out of the garlic. Not sure how this metaphors works, but I know I don't want to be that garlic clove, but that's kind of how I feel right now.
Tonight there was a code blue just 5 doors down from me. A code blue means that a child has gone into cardiac arrest. I sat here stunned thinking that some child might be dying just 30 feet from me. I even started to cry imagining what those parents would be going through. I did find out that it was a false alarm, but it's not the first code blue I've heard, and I'm sure it won't be the last. I hope I never heard a code blue called for Esther's bed, but that could be in our future and that is so hard to even think about.
OK, enough depressing talk. Today the kids and I had a great day! The Ronald McDonald House wanted us to make up wish lists for the kids for Christmas, listing things they want and what store to find them in. So we all got to ride on a Metro bendy bus! We rode out to Northgate Mall. None of the little kids have ridden on a bendy bus, so that alone made the day really fun for them!
Here was are on the bus - sorry for the blurry photos, but buses aren't great for taking photos without a flash:
And then the bus driver had a stop for a break (she was ahead of schedule) and offered to take a photo of all of us:
We went to Target, and first of all bought gloves and hats for all the kids and myself, as it was sooooo cold outside, and those items are few and far between in our house, and even fewer came down to Seattle, and none of them were on the kids when we left!
Then we started working out way around the store making the wish lists. It was a lot of fun!
When we got done, we headed out for the bus stop.
We tried to pass the time by singing songs and playing the alphabet song. Then we saw our bus - on the other side of the street! We missed the bus as we were at the wrong bus stop!
So we trecked 1 1/2 block in the freezing wind to the right bus stop, but since we knew it would be nearly 1/2 an hour until the next bus, we made a detour to the Starbucks across the street and we all shared hot cocoa and rice crispy treats ( I had a pepermint mocha twist, yummmm).
Back to the bus stop, and finally the bus came. This time we got to sit in the middle of the bendy bus - the kids had a blast! And the driver was in a hurry so it was much like a roller coaster ride - even knocking Dayton off his seat twice!
Then back to Children's where we hung out together with Esther for about an hour, waiting for the shuttle bus to take them back to RMH. Then things were more quiet around here, and after the volunteer baby holder (this time a daddy) came, I went upstairs for my CPR class. I was the only one there, and since I've already taken the advanced neonatal resusitation course, she made it more of a refresher and turned the 2 hour course into a 45 minute refresher for me! yeah!
Then back to my room with dinner, and a quiet evening of phone calls. Now it's time for me to crash, as Esther's asleep for the night.
BTW Esther had a good day - she was more like her "normal" self - alert when awake, and not fussy, but she was very scroogy with her smiles - I think she only let a couple loose all day, bummer!
Tuesday, December 16, 2008
Esther's surgery is scheduled for Monday
Here's the sunset from my room yesterday - it was beautiful:
We just got word that her surgery is scheduled for Monday. There is always the possibility that is will be delayed, like if a child needing emergency gets priority, then the schedule is bumped back.
Please pray that she remains stable until then, and does not catch any "bugs"
Here's the view from our room - snow on Giraffes, unusual sight!
Daryl brought Jessica, Rachel, Reuben, Daniel, Dayton, and Elizabeth down to stay in the Ronald McDonald House. We went shopping, made dinner, Daryl left for home, and I came back here to stay with Esther.
Yesterday I tried to make her bed look like a princess bed:
And here she is playing with her friends:
Esther had a great morning, she looked so good and was awake a lot. But starting around lunch time, she became grumpy, listless, her heart rate was excellerated, and she was breathing shallow and fast. She seemed to want to sleep, but couldn't settle into a relaxed sleep. This continued all afternoon and I bought it to the attention of the nurse, who told the doctors. They checked her out and said it could be the new medication she had started today, or it could be the larger doses of Lasix.
Here she is just hanging out today - just laying there looking at "Fruit Loops" - we gave her toucan this cute name - it's much easier to say then Toucan.
We had a volunteer come and watch Esther while I was with the kids, and when I came back, Esther had fully loaded her diaper - it stunk worse than any diaper I've ever smelled! She then rested comfortably and is still asleep. When she wakes up, I'm going to be very interested to see if her behavios this afternoon was from being constipated or if it was the meds. Only time will tell...I'm just so happy to see her resting comfortably.
I'm been a little out of sorts today - I cry easily. I got a call from my Aunt Marylin and she said they are all doing well, and that my Uncle is hanging on. But I haven't heard anything since this morning. I talked to my brother, Mark, and he said I could ride with him to the funeral - I just hope the timing will be good considering Esther's surgery.
Tomorrow I hope to spend most of the day with the kids. I've requested a volunteer to be here in the afternoon as they are having pet therapy for the kids over at RMH.
They are also having something special for dinner, but I can't remember what that is. We have to make a wish list for each of the kids, and they'll take the wish list and get the kids Christmas presents! The kids are so excited!
I am convinced now that this will be the most memorable Christmas our family has ever had.
We just got word that her surgery is scheduled for Monday. There is always the possibility that is will be delayed, like if a child needing emergency gets priority, then the schedule is bumped back.
Please pray that she remains stable until then, and does not catch any "bugs"
Here's the view from our room - snow on Giraffes, unusual sight!
Daryl brought Jessica, Rachel, Reuben, Daniel, Dayton, and Elizabeth down to stay in the Ronald McDonald House. We went shopping, made dinner, Daryl left for home, and I came back here to stay with Esther.
Yesterday I tried to make her bed look like a princess bed:
And here she is playing with her friends:
Esther had a great morning, she looked so good and was awake a lot. But starting around lunch time, she became grumpy, listless, her heart rate was excellerated, and she was breathing shallow and fast. She seemed to want to sleep, but couldn't settle into a relaxed sleep. This continued all afternoon and I bought it to the attention of the nurse, who told the doctors. They checked her out and said it could be the new medication she had started today, or it could be the larger doses of Lasix.
Here she is just hanging out today - just laying there looking at "Fruit Loops" - we gave her toucan this cute name - it's much easier to say then Toucan.
We had a volunteer come and watch Esther while I was with the kids, and when I came back, Esther had fully loaded her diaper - it stunk worse than any diaper I've ever smelled! She then rested comfortably and is still asleep. When she wakes up, I'm going to be very interested to see if her behavios this afternoon was from being constipated or if it was the meds. Only time will tell...I'm just so happy to see her resting comfortably.
I'm been a little out of sorts today - I cry easily. I got a call from my Aunt Marylin and she said they are all doing well, and that my Uncle is hanging on. But I haven't heard anything since this morning. I talked to my brother, Mark, and he said I could ride with him to the funeral - I just hope the timing will be good considering Esther's surgery.
Tomorrow I hope to spend most of the day with the kids. I've requested a volunteer to be here in the afternoon as they are having pet therapy for the kids over at RMH.
They are also having something special for dinner, but I can't remember what that is. We have to make a wish list for each of the kids, and they'll take the wish list and get the kids Christmas presents! The kids are so excited!
I am convinced now that this will be the most memorable Christmas our family has ever had.
I've heard this song dozens of times, but never really listened to the words - man this song really speaks my heart today:
"Bring The Rain"
I can count a million times
People asking me how I
Can praise You with all that I've gone through
The question just amazes me
Can circumstances possibly
Change who I forever am in You
Maybe since my life was changed
Long before these rainy days
It's never really ever crossed my mind
To turn my back on you, oh Lord
My only shelter from the storm
But instead I draw closer through these times
So I pray
Bring me joy, bring me peace
Bring the chance to be free
Bring me anything that brings You glory
And I know there'll be days
When this life brings me pain
But if that's what it takes to praise You
Jesus, bring the rain
I am Yours regardless of
The dark clouds that may loom above
Because You are much greater than my pain
You who made a way for me
By suffering Your destiny
So tell me what's a little rain
So I pray
Holy, holy, holy
Is the Lord God Almighty
"Bring The Rain"
I can count a million times
People asking me how I
Can praise You with all that I've gone through
The question just amazes me
Can circumstances possibly
Change who I forever am in You
Maybe since my life was changed
Long before these rainy days
It's never really ever crossed my mind
To turn my back on you, oh Lord
My only shelter from the storm
But instead I draw closer through these times
So I pray
Bring me joy, bring me peace
Bring the chance to be free
Bring me anything that brings You glory
And I know there'll be days
When this life brings me pain
But if that's what it takes to praise You
Jesus, bring the rain
I am Yours regardless of
The dark clouds that may loom above
Because You are much greater than my pain
You who made a way for me
By suffering Your destiny
So tell me what's a little rain
So I pray
Holy, holy, holy
Is the Lord God Almighty
No news yet...
They will be putting Esther on the surgery schedule this afternoon, sometime. The cardiologist will be bugging them again to get a date.
My Uncle Vern is still hanging in there. He is only on morphine right now. They believe he will pass away today.
I wonder what it will be like when he enters heaven...
I can only Imagine
I can only imagine
What it will be like
When I walk
By your side
I can only imagine
What my eyes will see
When your face
Is before me
I can only imagine
Surrounded by Your glory, what will my heart feel
Will I dance for you Jesus or in awe of you be still
Will I stand in your presence or to my knees will I fall
Will I sing hallelujah, will I be able to speak at all
I can only imagine
I can only imagine
When that day comes
And I find myself
Standing in the Son
I can only imagine
When all I will do
Is forever
Forever worship You
I can only imagine
I can only imagine
When all I will do
Is forever, forever worship you
I can only imagine
Psalm 116 - vs 15 - “Precious in the sight of the Lord is the death of His saintsâ€
My Uncle Vern is still hanging in there. He is only on morphine right now. They believe he will pass away today.
I wonder what it will be like when he enters heaven...
I can only Imagine
I can only imagine
What it will be like
When I walk
By your side
I can only imagine
What my eyes will see
When your face
Is before me
I can only imagine
Surrounded by Your glory, what will my heart feel
Will I dance for you Jesus or in awe of you be still
Will I stand in your presence or to my knees will I fall
Will I sing hallelujah, will I be able to speak at all
I can only imagine
I can only imagine
When that day comes
And I find myself
Standing in the Son
I can only imagine
When all I will do
Is forever
Forever worship You
I can only imagine
I can only imagine
When all I will do
Is forever, forever worship you
I can only imagine
Psalm 116 - vs 15 - “Precious in the sight of the Lord is the death of His saintsâ€
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