Sunday, January 25, 2009

Busy Times

It didn't take long for life to ramp up into overdrive around here!  Our weeks have been full of dentist appointments lately.  This coming week will be the first week in over 2 weeks that we don't have any dentist appointments - twice I double booked appointments now!  We'll have more dentist appointments starting in just over a week, and then on the 9th and 18th I'll be taking Esther down to Children's for follow-up appointments too!

We've also dug into school and are making good progress, finally.  It's so nice to have all the school age kids reading this year - last year was so difficult teaching 4 kids to read at different levels.  I still have all the school age kids reading everyday, but only one is still learning some phonics.  We're studying amphibians and reptiles for science, reading from the Mayflower Series for early American history - they are almost up to the Salem witch trials now,  Everyone has math, of course, and three of the bigger kids are doing Engish/Grammer together with Switched On School House and we have been studying the origins of the English language and spelling.  We are also working on penmanship - the oldest three are working on their cursive, and the younger ones on basic writing.

Esther is doing really well.  She's growing, slowly, but is growing.  She's gained around 9 ounces since she came home, which is 3 ounces a week - the cardiologist said that he wanted her to be gaining around 3 1/2 ounces a week.  Since she's doing this without a feeding tube, I'm happy with the progress.  She's been gaining faster the last week, but I've noticed that she does better with feeding (more volume throughout the course of the day) when we are home than when we go away for appointments, so I'm trying to delegate appointments more.

Esther is talking up a storm now - she was talking off and on before her surgery, and seemed to lose the skill after the surgery, but the last few days she's been talking like there's no tomorrow!  It's sooooo cute!  She has a very feminine voice that is soooo sweet!  She's smiling too, but not as much - it's harder to get smiles out of her - it's like she likes to talk more right now.

She's also starting to try to hold up her head now.  That was something she really lost after the surgery - but I've been working with her, so she's been gaining strength and now she's starting to try to hold up her head on her own - but she's like a bit bobble head doll right now.  But it's progress and she's progressing faster everyday now.
For those of you who love photos, here's some recent ones of Esther:

Here's a cute shot of Rachel cuddling with Esther this afternoon:

And here's Esther last Sunday, just before we left for church:

Here's our family (minus our oldest son, Jeremy) at Esther's dedication:

And here's Esther this morning, all dolled up for church:

And here's Rachel and Esther - Esther is wearing a new hat made by my friend, Laurie, who knitted this hat out of wool that she had purchased to make socks for herself, but after she read about Esther's problems with polyester and acrylic, and some prompting from her son, she made a hat for Esther instead - and she told me that with every stitch (and there is probably well over a thousand stitches) she said a prayer for Esther! Isn't that the most wonderful thing!

And here is the latest photo of her scar - taken just moments ago...doesn't it look marvelous!!

And last, but not least, we found out this week that our son, Jeremy, will be coming home on leave on February 21, and staying for 2 weeks. He'll be deploying to Iraq following his time at home. We are all very excited to have him coming home since we haven't seen him in well over a year now!

Friday, January 16, 2009

Esther's Dedication

Sorry I haven't posted in a while - my laptop is in for repairs, and I've had a very busy week.

I'm behind on everything it seems, but I'm making progress - paid some bills and went to lots of appointments (5 dentist appts in one morning, at two different dentist offices - I would never have scheduled it like that, but it worked out surprisingly well!).  I've been working on laundry, but have so much more to do!

Esther is doing well - still no feeding tube, and she's gained some weight - not as much as the doctor was hoping for, but close enought for her first entire week without a feeding tube.

The best news of the week is that we are going to be deicating Esther this Sunday - Sanctity of Life Sunday!  How special is that!  I was just checking to make sure I have my stats correct and it was - as quoted from Wikipediae "A 2002 literature review of elective abortion rates found that 91–93% of pregnancies in the United States with a diagnosis of Down syndrome were terminated." 

Isn't that sad!  So having Esther dedicated on Sancitiy of Life Sunday is just so special!  It is our pro-life statment!

Many you know that Sarah Palin (who ran for the vice presidency last year) has a baby with Down Syndrome - here's her statement about how she views her son, Trig - "Trig is beautiful and already adored by us. We knew through early testing he would face special challenges, and we feel privileged that God would entrust us with this gift and allow us unspeakable joy as he entered our lives. We have faith that every baby is created for good purpose and has potential to make this world a better place. We are truly blessed."

In case you missed it, here's what I had to say about Esther and Down Syndrome in a post last month -

"We believe that God has created Esther exactly the way He wants her to be. The way we needed her to be.  She is a precious gift from God.  She is exactly what God saw as best for our family.  I wouldn’t have her any other way.  God is working in our family through her and her circumstances."

If you want to be there for this special event, it will be at Silverbeach Community Church in Bellingham, WA at the 10:30 service.  Show up early to ensure you get a seat as last week the second service was full and it was just an average Sunday!  There's refreshments served before the service from 9:45 - 10:20 also!

So pray that God will protect us from illness so that we can all be there together when Esther is dedicated to the Lord, and that her life will continue to touch many live for His Glory!

Saturday, January 10, 2009

Quickly, so I can go to bed...

Just thought I'd let you know that Esther's first 24 hours without the feeding tube went great.  She even slept for 7 hours straight last night.  And, the greatest thing was that she gained weight!  So we are just finishing day 2 without the feeding tube, and she did better today that yesterday even!

I'm really tired tonight, so I'll have to keep it short - I was up early this morning to feed Esther (4 am) and couldn't get back to sleep, so I did some more investigating on the lead testing and found that our existing products can be sold without the testing that will be required when the Aug 10 deadline hits - I only need certification from the mills/manufacturers of the component parts.  That I am able to do, and already have several certificates already!  Yeah!

For my customers this means that for now our Snap-EZ line (including all those cute prints) will still be available for at least another 6 months or so.  I'm hoping they will come up with some exclusion for garments as fabrics are usually lead free (I've never heard of a fabric having lead, it's usually paints).

We are hoping to bring Esther to church tomorrow (but we aren't going to let anyone hold her yet, as this soon after surgery a cold could land her back in the hospital again), and I'm really lookng forward to going again as I've only been to church twice since the first of September!

Friday, January 9, 2009

One week at home!

And 11 days after Esther's open heart surgery.  Boy the time has gone fast, and I can not believe how fast Esther has recovered from such a major surgery!

Here's some photos of her right after surgery (these might be hard for some to view, sorry about that....but without seeing them you just can't understand what a dramatic improvement Esther has gone through)

Here's Esther the day before her surgery - notice how distended her tummy is?  That's because her heart is so enlarged:
Esther after surgery
Esther moments after we got to see her for the first time after surgery:
Esther after surgery
And here's the bank of machines putting medications through Esthers IVs (later the two ones that are off were also in use for feeding her and a new medication):
Esther after surgery
Here's Esther the morning of day 2, just before they took her off the ventilator:
Esther after surgery
Here's Esther on day 2 after they removed the ventilator:
Esther after surgery
And here's the miraculous change - here she is just 2 days later, on day 4:
Esther after surgery
We went home the next day, and on the following day, day 6 (Saturday), she was enjoying some time in her swing watching the butterflies:
Esther after surgery
And lastly, here she is today, showing off her soon-to-be-scar - her belly is still big, as her heart is still enlarged, but some of that is because she had just finished off 50 ccs of milk! The cardiologist says that it will take a few weeks for the heart to go to it's normal/healthy size as it is still recovering from the surgery.
Esther after surgery
Oh, and here's a great photo of the biggest snowman ever seen in these parts (Jonathan is 5 ft 11 inches if that gives you some reference for the size of the snowman):
Esther after surgery
I''m sure you are wondering how our day trip to Children's went - it started out difficult - a flat tire and news of road closures and flooding! We saw some of the flooding once I swapped cars with Daryl (when I finally got ahold of him after several phone calls, I found out that his place of work was flooded with around 6 inches of water and they had been forced to turn off all power so they wouldn't be electrocuted while they got the water out of the building!).
We went through water over the freeway by Lake Samish (seeing a "water over the roadway" sign when going 60 MPH on the freeway will definitely get ones heart-rate up, that's for sure!
We arrives only 45 minutes late for the appointment, and from there things went really smoothly - her check up was great, they said she was doing really well, and really loosened up the parameters for her feeding. Basically I could feed her however I want, as long as she gains at least 1/2 and ounce per day over all! Yeah! Now I can relax a little!
I even went so far as to pull her feeding tube this morning as she got all her daytime feeds through the bottle without using the pump or the feeding tube in anyway yesterday, and she was fighting some congestion that I was sure would improve if the feeding tube was out of the way!
The one draw back to removing the feeding tube would be that she wouldn't be getting a constanst feeding through the night - but this morning she woke up really hungry at 5 am anyway, so I think she's ready to ditch the tube and eat like normal babies! Well see how tonight goes - she downed around 70 ccs before falling asleep tonight (she drank it all in around 15 minutes as apposed to taking 1 1/2 hours to take that much before her surgery!).
Also, she's down to just two medications! She's still on Lasix, but they only have her taking .5 ml twice a day (she was at 1.5 ml three times a day before surgery), and a thyroid medication once a day. Both of which I can give her through her bottle with her milk! They are planning to go down to once a day for the Lasix after her next checkup in a month, and then get rid of it all together soon after that! She'll probably be on the thyroid medication her whole life though. But I can live with that!
Today was my first official day back to work (I've been just doing emails and bossing everyone around for what seems like forever), and boy was it exhausting! But we got a lot done, and there's work for all our seamstresses for this week at least! It's so hard to know what to do with this terrible law about lead testing hanging over our heads! If the law is not amended, our entire line of diapers and trainers will be unsellable in just 4 short weeks! The Eco products I can keep going with and have tested, but the diversity of the regular line is just not compatible with the type of testing they are requiring! If they will allow component testing, some of the Snap-EZ line will be salvageable, but not all of it. So we have decided to concentrate on the Eco line for now, and not put anymore Snap-EZ stuff into production until we know where we stand with the Feb 10 deadline! At least we started the Eco line this year, and the Snap-EZ 4 Life line will not be effected by this ruling in the least, so all is not lost.
I must get to bed, as I'm sure Esther will be noticing that she doesn't have that feeding tube in place tonight!

Thursday, January 8, 2009

2008...The Year of God's Blessings

Ok, so I had a lot of trials in 2008.  Now I'd like to talk about all the good things that happened in 2008.

First of all, at the beginning of 2008 we were in the middle of building a new home...our dream home.  Not that the home is everything we've dreamed about, but it's a wonderful home that meets all our needs, and some of our wants!  With my sprained knee, and being tired from my pregnancy, we all learned to pitch in where needed, and to share the work.  The kids who were able helped to paint, pack, clean, and move since I could do little of any of it.

When we introduced our new line of products, the Eco diapers and trainers, we met with great success - God richly blessed that move throughout the summer, helping us to defray many of the costs associated with our dental problems and other things.

God also blessed us with new seamstresses - and I didn't have to place one ad, as they all came to me through word of mouth.  This enabled us to expand without increasing my workload (much).  Also, Kenda really stepped up and went from sewing for us, to shipping for us, to managing all the shipping and some of the production as well!

We had a wonderful time at our church campout, and getting out trailer there was looking impossible (our 12 passenger van broke down over a year ago and we just haven't had the money to replace the engine), when a co-worker of Daryl's offered to loan us his truck to tow it to camp and back!  What an unexpected blessing that was!  I thoroughly enjoyed the break from reality that the church campout brings!

Through my bed rest, I learned to delegate more and more, and the children learned to be more self-reliant as well as more helpful with running things and helping the little ones.  This was great preparation for  when I stayed at the hospital with Esther, only we didn't know it at the time!

Esther's first hospital stay was a time of blessings in many ways.  Our friends rallied around us with meals, child care, gifts, visits, and above all, prayer.  We could not have survived all this as well as we did without such a wonderful network of support.

Two years ago, my friend, Renee, encouraged me to start a blog, so I started one.  I wasn't very good at blogging in general, often not posting for weeks (especially while we were building the house).  But because I already had the blog, it was such a blessing to be able to use my blog to update everyone without making dozens of phone calls.  Especially since I wasn't allowed to use my cell phone in the special nursery or the ICU at Childrens.  But what started out as a way to keep everyone updated on Esther's progress and get prayer request out there, turned out to be a wonderful outlet for me as well.  I can not tell you how much it helped me to process all that I was going through when I was able to blog about it!   I can also tell that my blog has also been used by God to bless others, and for that I am also thankful - that God used me for His purposes!

The 5 weeks at home with Esther in November was a great time of being there with my family, learning to manage feeding Esther with a feeding tube and managing her medications.  This was a huge part of Esther being able to come home just 4 days after having her open heart surgery.  We enjoyed a nice Thanksgiving together.  I also got to take a few rides down to Seattle for Esther's check-ups, taking one child each time and enjoying a day with that child - games of alphabet and eating out at Dick's Drive-In!

Spending December in Seattle was a time for our family to learn what's important (being together as much as possible), and how to be flexible (spending Christmas away from home makes keeping traditions difficult at best) and I know in the future we will really appreciate being home for Christmas!

Christmas at the Ronald McDonald House was full of new things - lots of wonderful gifts, Santa's visit, shopping in Seattle, meeting kids with cancer (for some this might have been their last Christmas) and kids with huge medical struggles.  We also learned  that having a child with Down Syndrome and a heart defect seemed like a piece of cake compared to some of the heart wrenching things we were seeing famillies dealing with there.

My time in Seattle was also one of building relationships.  With my brother, Mark, and my other brother, Tom.  With my friends who have gone before and spend time with their children in the hospital.  With people I didn't know before this time, but now I count in my circle of friends.  With those I have never met, but through our mutual experiences have now connected through the miracle of the internet.  With my mother as she relived her times at Children's over 50 years ago caring for my brother and sister who both spent time there. With my husband, Daryl, who grew so much through all that we were going through (I'm so thankful that this experience brought us closer together, as things like this can go either way).  And with my daughter, Jessica, who really came through for us in all of this.

Jessica...this has been a year for her as well.  Behind what you have read here is a dear daughter who has gone the extra mile.  She has stepped up the plate to fill the gap that I left behind.  Everyone who hears how many children we have always asks "how do you do it"...well as tough as it is for me to do all that I do, imagine trying to fill those shoes when you are only 18...and you are so concerned for your baby sister on top of it all.  It wasn't easy, and she learned a lot through this, and boy is she going to be a great mother someday!  I don't know how we could have made it through all of this if she hadn't been there to keep things together so much of the time.  I'm so thankful to God that He blessed her with the abilities she has and that He created in her a spirit of willingness.  Thank you Jessica!

Preparing your heart to turn over you baby to open heart surgery also blessed me with a closeness to God that I have not felt in years.God is truly close to the broken-hearted.  During that time God surprised me with encounters with two strangers - one who told me that God was going to bless us double-fold for all that we have gone through, and another who showed up just as we were going to give Esther to the nurse who would take her into the operating room who came along side me, put her hand on my shoulder, and told me that she had been praying for Esther for over 2 months already and that Jesus would take care of her.  God sure knows how to carry us.  He cares for us in ways we could never imagine possible!

And lastly, even though this happened after the New Year, it was in the works before this.  I trained a new seamstress this fall, Laura, and she's done so well, especially since I just finished training her the week before I had Esther!  But she's been more than a seamstress - she's been such a great source of encouragement - little gifts, beautiful cards, wonderful words to lift me to Jesus.  Visits at the hospital, and encouragement through comments on my blog too.  But to top it all off, she called on Tuesday and said she'd like to drop off a gift for me (I couldn't imagine what it would be as she's already given us so much), but I was home so I said come on over, even though our driveway is a mess and you'll have to walk in!  So she arrives with a beautifully wrapped, suspiciously heavy gift for me.  I open it, and all I could do was cry.  If you will look back to the middle of November, I commented that many people have told me I should write a book in my spare time "what a hoot" I said.  Well, there in that box was my blog in print!  God had put it on her heart when she read that post, and she print and bound my blog starting the day after Esther was born, and all the way to the post I had posted the evening before!  It took 3 volumes!  And all three volumes have the most beautiful covers - see for yourself:

I can not describe how it felt to see my own words in print like that.  I just knew that this was straight from God and that Laura was the perfect person to do this for Him and me (can you tell the Laura is a scrap book lady?)

So there, Aunt Marilyn and others who encouraged me to write a book or to get my blog put into book form, Laura has accomplished for me what I could not have possibly done on my own!  Thanks Laura!

2008 was a year of trials, to be sure.  But it was also a year of expanded horizons, unforgettable moments,  and unbelievable blessings straight from the hand of God.  Thanks for sharing this time with me!

Tuesday, January 6, 2009

2008...The Year We Survived

I distinctly remember telling Daryl sometime last spring, that 2008 would be a year that we would look back on as a year we survived.  How little did I know then, that that would seem soooo true by the end of the year.

Yesterday, while walking down our driveway in deep snow, in rubber boots, I had a flash back that almost made me turn around and go back in the house as fast as I could.  It was one year ago, the first Monday in January, that I had ventured out in 4 inches of fresh snow to get paint for our new house and a pregnancy test.  I didn't make it far before I found myself on my rear-end, hearing my knee make this sickening snapping sound.  That's how my 2008 started out - strained ligaments, a house to paint, and finding out that I was pregnant.   With the help of friends, and Daryl, and the kids, we did get the house painted.  My knee healed slowly (I wasn't completely free from pain until the middle of summer).

We started moving into our new home in March, and finished moving out of the mobile home sometime in April.  I never did get all the trim painted...and cleaning out the mobile was a "whole nother story".  It took weeks of hard work to get caught up on business "stuff", and the summer was zooming by.  We had to sell the mobile home, and that just wasn't working out.  We had a deadline to meet and it was fast approaching.  On every turn it seemed there was difficulties - major non-cosmetic orthodontist work needed to be done on 3 kids, 2 little ones needing to have major dental repair with a pediodontist, a broken foot, a hole in Rachel's back that needed stitches,  building permits/inspections, getting the exterior of the house painted, and then boom...I'm on bed rest for high blood pressure for some strange reason.

By the beginning of September, I thought we had gone through the most difficult 8 months ever...and if I could just get through this labor and delivery, life could get on into a normal pattern once again.

Boy was I ever wrong....we hadn't seen anything yet!

Esther's life threatening birth, and subsequent 5 1/2 weeks stay at St Joes, and then at Children's was just not what I expected.  Those were long weeks of  waiting...for what we weren't quite sure, except we wanted to take her home and get back to life as usual again.  Then, we did make it home.  But it wasn't life as usual - it was caring for a fragile baby with a difficult medication regimine and feeding her wasn't easy either.  We tried to find a new normal, only it seems to be always out of reach - every day something different got in the way.

Then, just when things were seemingly smoothing out (I caught up with laundry, had put on a decent Thanksgiving celebration, and had most of the Christmas decorations up), the bottom fell out again.  Just after hearing that an old friend's husband had died suddenly, we were back in the hospital.  Two home trials soon were failed and we faced that fact that Esther couldn't go home until her heart was fixed. I missed our friend's memorial service.

The day Esther got transferred to Children's, even as we passed through ER to get in the ambulance, my favorite Uncle Vern was fighting for his life with a life threatening stroke - I passed just a few feet from him without knowing it!

Esther's open heart surgery was scheduled just as we heard that Uncle Vern had passed away - they were scheduled for the same day.  both were rescheduled, but again on the same day.  I guess I wasn't meant to attend his memorial service either.

Just when the year was winding down, and I was facing the hardest day of my life, it got harder.  On the eve of Esther's surgery, I got a call from my sister, as she had driven herself to ER and the doctors said that dreaded word...cancer.  That was indeed the most difficult night of my life.

Esther's surgery went wonderfully, and before the year wound down, she was out of ICU, and we got to ring in the New Year in Esther's room on "the floor".

So, what do you think?  Will we look back later and say "2008...the year we survived"?  I'm sure we will, but I'm hoping we will also look back and say "2008...the year we learned to trust God, even in the storm".

Monday, January 5, 2009

Crazy Day

Mondays can be that way.

While I was pumping this morning, I had turned on the radio so keep Esther calm, and they were asking people to call into the radio station and tell them what you were looking forward to in 2009.  Man, I really thought about calling in!  I'm looking forward to a year that will not be 2008 - it was a tought year right from the beginning - but I'll get into that in a separate post later....

Today was indeed crazy! It took until 10 am before I had everything ready for taking Esther out for the day and had her fed, and catch up on 13 phone messages and making dental, orthodontist/oral surgery appts for some kids, and paying some overdue bills.

I got everything in the car, and headed out.  But I only got 20 feet out of the garage before the station wagon got high centered in the deep snow.  We were saved by Kenda, my dear friend and our shipping gal/office manager. She gave us a ride to our doctors appt (she was smart enough to park at the end of our 400 ft long driveway, ensuring that she'd get out again.

Esther's Dr appt went well - she still weighs 11 pound 15 oz - the same she weighed on the 2nd of Dec.  She also got her stitches out from the hole left when the drainage tube was removed (she doesn't have any stitches from her incision as they closed that with some kind of surgical super glue).  She didn't like that part.  Then Daryl and I drove him back to work so I'd have a car for my errands.

Then we did some shopping and banking, and the went to JoAnns to get some fabric to make larger blankets for Esther (like receiving blankets, only bigger as she is so hot to hold, and having a thin blanket between her and you makes it so much more comfortable for both of us, but she's starting to get too big for some of her blankets.).  Then we picked up Daryl  and went to Costco for a few odds and ends - small shopping trip for us as we spent under $150!

Then we had dinner at Billy McHales ( we split an order of potato skins, and split a dinner and a dessert!), then stopped by Grandpa and Grandma Einfeld's so they could see Esther, and then made for home.

The kids unloaded the car and carried everything down our long driveway while I got Esther ready for bed (medications and feeding as well as pumping and preparing her over night milk).

Tomorrow's a stay at home/make blankets/catch up on emails day, and Wednesday we have follow up appointments at Children's.And please pray for my sister, Lisa, as it is looking like she does have a tumor/cancer or something and her doctor has referred her to an oncologist.  She has an appointment for a consultation on Thursday, and they will probably schedule surgery at that time.  She is in good spirits, and is relying on God and His sovereign loving care through this time of waiting, and I'm so proud of her.  Pray that she will continue to rest in the knowledge that God loves her and is in control of even this.

I was reminded of a song by Rich Mullens today, it was playing on the radio, it's called Hold Me Jesus, and it's so where I am, and I'd love to share it with you, especially you, Lisa (she reads my blog everyday, so post here if you have any encouraging words for her!)

Hold Me Jesus

"Well sometimes my life just don't make sense at all
When the mountains look so big
And my faith just seems so small

So hold me Jesus 'cause I'm shaking like a leaf
You have been King of my glory
Won't You be my Prince of Peace

And I wake up in the night and feel the dark
It's so hot inside my soul
I swear there must be blisters on my heart

So hold me Jesus 'cause I'm shaking like a leaf
You have been King of my glory
Won't You be my Prince of Peace

Surrender don't come natural to me
I'd rather fight You for something I don't really want
Than to take what You give that I need
And I've beat my head against so many walls
Now I'm falling down I'm falling on my knees

And this Salvation Army band is playing this hymn
And Your grace rings out so deep
It makes my resistance seem so thin

I'm singing hold me Jesus 'cause I'm shaking like a leaf
You have been King of my glory
Won't You be my Prince of Peace

(Interestingly enough, Rich Mullens recorded this song in 1993,  and he was killed in a freak car accident on 1997.  He was one of the best Christian recording artists ever - I love all his music.  He even gave away all his profits - lived on an average American salary, and the rest was donated to non profit agencies - mostly those working with Native Americans - do a Google search and learch about his life and death and the beautiful songs her wrote and recorded!)

The other song, Praise You in this Storm, kept running through my mind today at odd time, especially after talking with Lisa this evening.  I've linked to before, but just in case you are new to my blog, here it is again:

Praise You in this Storm

I was sure by now
God 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

But as the thunder rolls
I barely hear Your 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

I'll praise You in this storm
And I will lift my hands
For You are who You are
No matter where I am
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
You raised me up again
My strength is almost gone
How can I carry on
If I can't find You

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

I'll praise You in this storm
And I will lift my hands
For You are who You are
No matter where I am
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 lift my eyes unto the hills
Where does my help come from?
My help comes from the Lord
The Maker of Heaven and Earth
I lift my eyes unto the hills
Where does my help come from?
My help comes from the Lord
The Maker of Heaven and Earth

Now it's off to bed as, for some strange reason I'm completely exhausted (Jennifer - I got your advise too late! LOL)

Saturday, January 3, 2009


You would not believe how wonderful it was to take a long bath, snooze on the couch while the family watched a movie, and then, above all else, sleep in my own bed!  I haven't slept that soundly in weeks, and it was sooooo refreshing!  When her feeding pump sounded at 2am it took me a while to figure out where I was and what I needed to do!

Daryl and I were bummed that we'd miss seeing our new home in snow, but guess what?  We got home and there's still close to a foot of snow here!  We actually can't even get our cars to the house yet! Here's what our new home looks like in the snow - isn't it pretty?

So we had to unload at the end of the driveway, and walk in (our driveway is about 450 ft long!).  Daryl's working on getting the camaro running (the battery is dead, and we think the alternator is toast as well), as it is in front of the station wagon, and then see if we can get the cars down the driveway - I'm not real comfortable with not having any cars at the house, and the driveway blocked and Esther just home from open heart surgery - on discharge they gave me a list of things, that if I see any one of those signs, I am to call 911 immediately.  I did talk with my friend, Laurie (her husband is a firefighter and works in the same fire hall as my brother, Mark, in Bellevue (small world, eh?)), and she told me that if need be, they will walk in and carry out through the snow.  That eases my mind some, but if we can fix things, that would be much better!

But the best news today is that Esthe drank an entire 75 cc feeding from her bottle - it took a couple of drinking sessions, and just over 2 hours, but she did it!!!!  Look out feeding tube, your days are numbered!

Here's Esther in her favorite place - swinging in her butterfly swing:
Esther in Baby Swing Video

Friday, January 2, 2009

We are Home!

We got to come home today!  yeah!  We even got a ride home - by my Aunt Marylin!  She saw me post about working out going home as we sent all the cars home with the kids, and she knew that God wanted her to give us a ride home.  She lives in Bellingham, so she drove down to spend time with her kids on Thursday and if we got out before Saturday, she'd be able to give us a ride home!  It worked out beautifully, and as always, I loved spending time with her!

It's been a long day, and my camera is still packed, so I'll keep this short so I can get to bed before midnight!

Esther still has some potential problems, like infection or illness or being handled wrong (if you pick her up by her arm pits or arms, her sternum could be cracked), so please continue to pray that her recovery will go smoothly.  She has an appt with her pediatrician on Monday, and we have to return to Children's on Wednesday for a follow up with a cardiologist, including an echocardiogram and EKG (she had both of those today and they all looked great!)

Thanks so much for all your prayers and words of encouragement through these trying weeks!

Thursday, January 1, 2009

Esther might go home tomorrow!

She's doing great!  She's off everything, even her IV!  She's on all oral medications right now, and taking a bottle for some of her feedings.  She's about where she was before her troubles that started at the beginning of December, taking around 40 ccs by bottle, and then we give her another 60 ccs through her feeding tube.

The key to her going home is that she needs to be gaining weight, but not retaining fluids (making sure that taking her Lasix orally is working and that she is on the right dosage).  Tomorrow morning's weight will tell all.  This morning compared to yesterday afternoon was good, so that much is good.

We got her bed all set up with her new and old friends watching over her:

Oh and she's got her smile back - she doesn't give out a lot of them, but she;s definitely smiling again.

The only pain reliever she's on is tylenol, and if she didn't ever get hick-ups, she probably wouldn't even need that.

The challenge is picking up and holding her - we can't pick her up using her arm pits - she needs to be scooped up.

They said she could be laid on hertummy against your chest, but that would really depend on her level of comfort, and so far, she doesn't like it at all, so cuddling the way like to cuddle Esther will have to wait a little longer. But, right now I can pick her up and hold her all I want.

Esther even got a bath today! We couldn't let her incision get soaked, so it didn't have as much water as usual, but she definitely got a bath, and man did she ever need it - mostly from adhesives left from surgery.

She looked so cute after her bath:

And last but not least, Happy New Year everyone!