Priscilla's Story Really Started in 2008 You Know...

I have an incredible, mind boggling story to share with you.


It really starts in 2008, when Esther was born into our family with that blessed extra chromosome.  But let me skip ahead a little first.

In February of 2010, an expectant mother got the news that mothers dread.  Through a standard ultrasound, it was revealed that their daughter had not only a heart defect, but also had Down Syndrome.  As she was dealing with this news, a friend sent her a link to my blog.  Esther was just about 1 1/2 years old at this time.  She found encouragement in what she read, and also lots of information.  She blogged about finding my blog Here.

I didn't find out about it for several months, as she had sent me a message on a board for parents of children with Down Syndrome and I had not visited that site in months.  I found her note just weeks before her baby was due.  When their baby was born, they named her "Verity" which means truth.

Verity, 1 1/2 years old
Katie, 9 years old

I found her blog and began to follow an amazing story of the love a family can have for a precious baby with the gift of Down Syndrome.  But it didn't end there.  Susanna read This Blog Post about the plight of children with special needs in Eastern European orphanages and her eyes were open to the truth.  This led to their adopting Katie, a 9 year old with Down Syndrome, hidden away in the top floor of a terrible orphanage.  She weighed just 10 1/2 pounds when she was ransomed.  She required specialized medical care to preserve her life as they transitioned her to good medical care and proper nutrition.

Katie and Verity, just 14 months later

Katie blossomed in her new family.  She grew and learned to do so many things so quickly. (Susanna and her family are now adopting Tommy from the same orphanage that Katie was in).

But the Mussers weren't satisfied with just saving one child.  They worked to make changes in that orphange, and changes were made.  The director was fired and fundraisers were done to provide proper medical care for the orphans there.  They spread the truth of what was going on there and so many families have stepped forward to ransoms these deprived children.  The Mussners have ransomed another child there, 16 year old Tommy. He has been home for a while now and is blooming too!

Tommy enjoying time with
his new mommy when she
came to visit!

 When I read about the things happening on the other side and world, and what a difference a loving home can make in the lives of these forgotten, abandoned children with special needs, I was inspired to act.

Tommy, 11 years old

I knew there were so many others still in those dark, filthy places where children were not properly cared for.  So I had to act - I started advocating right her on my blog and on Facebook.  I selected some children and a family to advocate for.

But God wasn't satisfied with that level of involvement.  He pushed us to consider adopting a child into our family.  This was WAY outside our comfort zone, but God was relentless.  We tried and failed to adopt a little girl from Russia (before that evil ban was put in place).  We discovered "Priscilla" in January.  We tried again in January and found success.

Priscilla, Whom we re-named "Christiana" and we call her "Christy", is the daughter we didn't know about until just over 3 months ago.  But God knew she was our daughter a long, long time ago.  Do you know how I know this?  Because I discovered something tonight.

So Christy's story starts way back in 2008, when God blessed us with Esther and opened our eyes to the wonder and joy or raising a child with Down Syndrome.  And then, way back in February of 2010,  Susanna was given her news and she found my blog,  and Christy's mommy was just finding out that she was pregnant.

So God, in His sovereignty, put into motion the events that it would take for us to discover Christy just when He had prepared the soil of our hearts to be ready to adopt.  Before Christy's mother could possibly know that she had Down Syndrome, God knew it, He had designed her that way.  But He had a plan, and that plan has been in place long before we had any idea that God had a plan like this for us.

Isn't God's sovereignty amazing?

I can't wait until the day that I can tell Christy that God prepared her place in our home for her before she was even conceived.

What Can I Give Him....

Do you remember that sweet Sunday School song..."What can I give him, poor as I am?"  That kind of thought has been going through my mind over and over again throughout the past month of so...and here's why.

No, I am not poor, but I feel so unable to do something to help the helpless.  Over the last 22 months I have been following a family's journey through adoption and beyond.  This family was adopting internationally, like many other families I know.  But this was different.  First of all, I had never met this family, but I have a close connection to this mother going back ever farther.  Over two years ago, Susanna contacted me after she found this blog.  You see, she was expecting her 10th baby and had received a prenatal diagnosis of Down Syndrome.  When she was researching to prepare for her new little one, she found my blog and read about Esther . She sent me a message (which I found just weeks before her baby was due) and told me that my blog was a great help in preparing her for her little one, answering questions and dispelling fears.  I loved connecting with another mother-of-many  who would be mothering a precious child with Down Syndrome.  I followed via her blog, The Blessing of Verity, as she went down many of the same paths that we did...nursing difficulties, heart defects, open heart surgery, Occupational Therapy, Speech Therapy and more.

This precious little girl was born into an amazing family.  They loved her before they saw her.  They cared for her oh so carefully as she too, like Esther, had a hole in her heart.

But then, their journey began to take a new direction - adoption.  This was not something I could personally relate to, but was fascinated by.

I've known several families who had adopted internationally and have watched as they blessed children who had little opportunities to grow and develop in the nation of their birth.  Some were old enough to know the difference, others were not.  I always thought that it was wonderful that these parents would make such a huge sacrifice to help a child - to make a difference in the life of a child who has little hope in their future.

But Susanna's adoption showed me a whole new world.  Children who desperately needed to be adopted.  Babies and children left in their cribs all day.  Children with feeding problems who had a bottle propped up in their mouths and left to "deal with it".  Babies who had their diapers changed once a day.  Children who had never seen the light of day.

When I think back to the weeks we spend with Esther in the hospital I remember going days without stepping foot outdoors.  This was especially bad when she was in the Special Care Nursery in our local hospital as there were no windows to the outdoors, and in NICU at Seattle Children's Hospital as only some of the NICU rooms had windows but we never seemed to get a "room with a view" there.  I think it messes with your mind if you never get to breath fresh air, feel a breeze on your skin or the sun on your face (for that matter, the rain on your skin or the snow gently caressing your face - Esther's journey to her heart repair was mostly in the winter ;).  When I think of our Esther being deprived like that I just can't even stand the thought.  She had my love and tender care everyday, as well as  caring nurses, regular diaper changes and careful feedings even if I wasn't present.  But these precious little ones are never held, rarely talked to and hardly ever get out of their cribs.  My heart broke for these forgotten children.  There has been a program set up to give "Babbas" to these children, grandmas if you will, and this has helped tremendously, but it's not enough.  To read more about Pleven, the orphanage that Susanna was adopting from, Read This.

The really sad part to me is that children with Down Syndrome are so social.  They love to be around people, they love to smile, give hugs and kisses and are in tune to the emotional needs of those around them.  But these precious little ones at Katie's orphanage, on her floor,  could not do any of the these things, and to be aware of the great needs of those around them (even if only to be in tune to the suffering sounds around them), seems to me like the cruelest hell for someone with their special abilities.  Not all of the children on Reece's Rainbow are in these terrible institutions, but many of them are.  Even those that are in good orphanages or foster homes need the special care that only a lifetime family can give them.

Here is Katie without her family...take a good look at her calf and her wrist...

Susanna's blog posts told of these deprivations and more, but she also shared about a wonderful organization that was dedicated to finding these "hidden treasures" and getting them adopted.  It's called Reece's Rainbow.  They specialize in working to get orphans with Down Syndrome adopted into loving families, but they also have other "angels" who have other problems like Cerebral Palsey, Spina Bifida, Brittle Bone Disease and other birth defects.  I couldn't believe how many children there are in the world who had been rejected by their families because they had Trisomy 21 or some other birth defect.  I understand that some of them might have been unable to get their child the medical care that was needed, but by far the majority of these children had been abandoned at birth because they were not "perfect".  For many, the stigma of having an imperfect child was just too great, the sacrifice too much.  After about a year, Suzanne was able to visit their "Katie-bird", set up things for her care to prepare for going to her forever-home, and then return to bring her home.  This little girl may look like  she's a baby is in reality 9 years old in this photo.

I watched through her blog posts as Katie was able to come home to her forever family.  She flourished through both proper medical and physical care as well as the love of her new family.  She became active, started connecting with people, learning to love being held and caresses, and above all, growing!  She went from a child starving both physically and emotionally to a little girl thriving on good nutrition, proper medical care, lots of fresh air and timely diaper changes, and loads of love...these two photos are just 7 months apart!

But why am I telling you all of this?  No, we are not adopting (at least not yet, but who knows what God might do in the future).  Am I trying to get the word out about Katie?  Yes and No - this little girl has been saved out of that life, she's doing wonderful in her new home and new family, but that is not the real purpose.  I am telling you this story because it shows what a loving home and family can do for a child seemingly beyond hope.  Looking at Katie's photos in the orphanage you wonder if there's any hope that she could survive, let alone thrive...is the damage done too great?  Is it worth all the money and hard work to adopt a child from so far away?  Would she appreciate it?  Would she ever be healthy?   The answer is yes!  It is worth it all to get her into her forever family!  She will continue to have health repercussions and developmental delays due to the deprivations she experienced, but they are slight compared with the future she faced without adoption.  And she's not alone!  There have been several children adopted out of the institution where Katie came from and they too are thriving in their new homes, loved and cherished by their new families! And there are still over a hundred children (to the best of my knowledge) in that very institute, desperately needing to find their forever families.

I have been so challenged by all of this.  I've even looked into what it would take for us to personally adopt a child with special needs.  But at this time we can not do that (my knee is the biggest hurdle as I might be having surgery and laid up for a while this fall).  I'd love to be able to financially assist another family adopting, but we aren't in a position to do that right now either (but I hope to do this in the future).  But what I can do is get the word out - through my blog and through my business.  I can also become a Prayer Warrior, a Guardian Angel, a Family Sponsor and/or an Orphan Warrior.  I'm hoping to do all - I've even picked out which ones I want to feature here!!  

So, "what can I give Him?"  I'm giving my time, energy and my blog.  I can get the word out that these children need help.  Reece's Rainbow is dedicated to matching up families who are able to adopt, children with special needs who need to be adopted,  and those who can't adopt but can donate towards those adoptions.  It's a match made in heaven!

I've heard it said "but I can't help all those children!" No, but you can make all the difference in the world to one child.

Please take some time to pray about how God would have you help bring these precious little ones into homes where they will be loved and cared for.  It could be a simple as "sharing" this blog post, being a prayer warrior, "sharing" a little one as a timeline update on your Facebook account, sponsoring a little one or a family on your blog, or donating money towards a child or family.  Maybe for some of my readers God has grabbed a hold of you heart and challenged you to go further.  If so, I'd love to hear about it and work to help you bring your forever child home to your family!

Here are the precious little ones I have chosen to sponsor here on my blog:

Alexdra is a little girl who has Brittle Bone Disease.  She just turned 5 years old. She is in an Eastern European Orphanage. I hope to be her official Guardian Angel.  She needs to find her forever family!  Take a minute to check out her profile, and, if you can, send some money her way so her forever family can get the help they need once they find her!

Kimberly  is from Latin America.  She has Down Syndrome and a few other medical issues that we are familiar with like crossed eyes and hypothyroidism.  We have all marveled at how much she looks like Esther (hair color aside)!  I am going to be her Orphan Warrior.  Her forever family needs to find her! Please donate on her behalf - she doesn't have anything yet!

And the family we are sponsoring is Paul and Maria Brown of Washington State!  I picked them because they are here in Washington, and they are adopting a little girl named Gemma out of Pleven, the orphanage where Katie was adopted from.  I am looking forward to following their story as it unfolds, watching as God works His miracles in the life of another precious little one who has found her forever family!  You can too - check out their adoption blog, Carry Your Light.  Take a minute to check out their profile by clicking on the image below, and help them build their adoption fund - I'm sure it would be encouraging them as they are just starting out in this journey!

21 Things about Esther

This post is inspired by Ruby's Mom!
1.Esther is loved by God, and made in His image.
2.Esther is loved by her ten siblings, two parents, three grandparents, and lots of uncles, aunts and cousins!
3.Esther's Daddy knew she was going to be a special child even before she was born.
4. Esther Heavenly Father blessed her with an extra Chromosome that made her special before she was born.
5. Esther spent 11 of her first 16 weeks in in the hospital.
6. Esther had a VSD and an ASD that were repaired when she was just 3 months old.
7. Esther has low thyroid, and has trouble with aspirating liquids when drinking, but we thicken all her liquids and she does great now!
8. Esther loves unconditionally
9. Esther loves to laugh!  She also love to make others laugh
10. Esther learned to sit up at 8 months.
11. Esther learned to crawl just past 1 year of age
12. Esther learned to walk just last week (she is 25 months old)
13  Esther LOVES to read books!
14. Esther loves to push things around the house while walking behind them!
15. Esther loves it when we clap for her accomplishments
16. Esther can do most of the motions for "Itsy Bitsy Spider"!
17. Esther loves to give hugs (she pats you on the back - it's so sweet!)
18. Esther sucks her thumb.
19. Esther loves music...especially when falling asleep!
20. Esther loves ice cream
21. Esther loves to climb the stairs...up and down...up and down...up and down....

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!

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 moments after we got to see her for the first time 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):

Here's Esther the morning of day 2, just before they took her off the ventilator:

Here's Esther on day 2 after they removed the ventilator:

And here's the miraculous change - here she is just 2 days later, on day 4:

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:

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.

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):

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!

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)

Awwwww.....

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

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!

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!

Esther is out of CICU

Esther has moved to "the floor" today!  She's doing great, and has even been off morphine since early this morning, and just on Tylenol and resting comfortably!  They will be removing her central line as well as her arterial IV, and then placing a new peripheral IV before she goes to the floor.  She's been getting breast milk by feeding tube all night, increasing from 5 ccs per hour to 25 ccs per hour this morning.  She hasn't had even one episode of reflux at all.

Here's a sweet photo I got of her late last night when she was bundled to get her temperature back up:



She has been having mucus in her  throat, and for some reason she doesn't like to cough.  They used deep suctioning to get rid of it last night, but this morning, they really want her to cough it up, and so far she's doing well.  She's been having trouble regulating her temperature - bundle her and she gets too warm (like 99.9), but if left with out a blanket she gets really cool.  Sometimes even just a blanket loosely over her can make her too warm too!  Hopefully she'll level off once we can get clothes on her (once her lines are out she can wear clothes again.

She also gets to start binky training again today!  She will be so happy!  She's been sucking for all she's worth whenever she's not sleeping.

I finally went through my memory card and got some of the photos we took last weekend when Esther got many visitors!

First Uncle Ed, Aunt Denise, and Uncle Duane came by:



Aunt Denise even got some smiles from Esther:



Then Auntie Lisa came and had a great time talking with Esther:



Auntie Lisa brought Esther the cutest Lady Bug, whom we will call "Lady" - Esther loves the bright colors - we suspended her from the mobile above the swing, and soon Esther was taking aim and hitting Lady like she was a pinata!




Then after lunch, Daryl's sister, Jeanne (Esther's middle name is Jeanne), and her family came by on their way home to Indiana!

Here's Esther with her cousin Caitlyn - she had the touch and soon Esther was sound asleep, and sprawled in her lap"




And here are Caityn's brothers, Aaron (has his pilot's license and is going to college), Nathan (also attending college), and Derrick (he and Caitlyn are in high school):


and here's Jeanne and Dave laughing with Daryl:


That was a lot of visitors, that's for sure!

It is well with my Soul

 This morning my Itunes was playing "It Is Well With My Soul"

It is well with my Soul

When peace, like a river, attendeth my way,
When sorrows like sea billows roll;
Whatever my lot, Thou has taught me to say,
It is well, it is well, with my soul.


It is well, with my soul,
It is well, with my soul,
It is well, it is well, with my soul.


Though Satan should buffet, though trials should come,
Let this blessed assurance control,
That Christ has regarded my helpless estate,
And hath shed His own blood for my soul.


It is well, with my soul,
It is well, with my soul,
It is well, it is well, with my soul.


My sin, oh, the bliss of this glorious thought!
My sin, not in part but the whole,
Is nailed to the cross, and I bear it no more,
Praise the Lord, praise the Lord, O my soul!


It is well, with my soul,
It is well, with my soul,
It is well, it is well, with my soul.


And Lord, haste the day when my faith shall be sight,
The clouds be rolled back as a scroll;
The trump shall resound, and the Lord shall descend,
Even so, it is well with my soul.


It is well, with my soul,
It is well, with my soul,
It is well, it is well, with my soul.

- Words by Horatio G. Spafford, 1873
- Music by Philip P. Bliss, 1876
The words to this hymn was written after two major traumas in Spafford's life. The first was the Great Chicago Fire of October 1871, which ruined him financially. Shortly after, while crossing the Atlantic, all four of Spafford's daughters died in a collision with another ship. Spafford's wife Anna survived and sent him the now famous telegram: "SAVED ALONE." Several weeks later, as Spafford's own ship passed near the spot where his daughters died, he was inspired to write these words.


Bliss originally named the tune "Ville de Havre" after the ship on which Spafford's four girls perished, the SS Ville de Havre. Ironically, Bliss himself died in a tragic train wreck shortly after writing this music.

(http://www.the-synergy.com/lyrics/itiswell.html)

This morning I reflect on all I have gone through this year, and I see that God has lead me through very difficult trials, but that through it all, He has given me the grace to stand faithful to His call.   In light of the tragedies that Horatio Spafford went through (it doesn't mention it above, but preceeding the fire, his only son died suddenly at just 2 years of age), my plight seems small indeed.

I got to hold her!

She is uncomfortable when she is moved, but soon settles in.  She had a great awake period after I held her, but I was so exhausted, I just had to sleep, so she got some daddy time instead.

Here we are all together:



Getting her into my arms is a three ring circus - she has more lines that you could ever imagine!!

And here she is during her super awake time - she was evenbatting at her Lady Bug toy from Auntie Lisa!



We found out today that our propane tank is empty - the kids came home to a cold house, could water, and Daryl's shop smelled like propane - that 500 gallon tank was topped off in October, so we are thinking that something went wrong with the heater in he shop and it drained the tank. This is very upsettiing as it is a fire hazard and that is hundreds of dollars of propane gone. This month has not been easy on our finances, and December is notorious for being slow in the cloth diaper market...and thei year was definitely no exception.

I'm not sure how we are going to make ends meet over the next couple of weeks, but I know God will provide.

Day 2

Esther is looking so much better!  They've removed the drainage tube and wires from her chest, her urinary catheter, her stomach suctioning tube, and her breathing tube!  She's breathing on her own, and is getting very little oxygen.  She breaths soooo slow now that I just can't get used to it!

Oh - and she's past the critical "first 24 hours", so unless she develops an infection, things should go great from here on out.  She'll be coming out of ICU sometime tomorrow, or maybe Thursday at the latest.

If you remember, her "baseline" for breathing was 60 - 70 breaths per minute, but now she's 20 - 30!   It almost scares me into thinking she isn't breathing!  I haven't been able to hold her yet, as they just removed the breathing tube about an hour ago, and they wanted her to rest and level out before we hold her.  So I took a shower and Daryl and I had lunch together.  She's still sleeping, so we are waiting for her to wake up.

Jessica and the kids are on their way home right now. They wanted and needed to be home.  Daryl is staying here, and we are with out a car, but Jessica can come down when she gets discharged, or maybe God will surprise us with an unexpected ride home like last time when Daryl's sister-in-law had to be down here for a doctor's appointment and was able to pick Esther and I up and take us home!  Who know!

Today I'm really tired and out of sorts - I think the stress of the last few days has really taken a toll on me.  I'm going to make this short for now and take a nap until Esther wakes up.  I'll try to post some photos tonight!

On the other side now for 5 hours

Esther is doing well.  She's heavily sedated, but she does respond to my voice.  I am so exhausted I don't want to do anything, so I'm going to keep this short.  They are going to keep her on the ventilator until morning and possibly longer since her lungs have been so overworked lately and still had fluid in them.  With the ventilator in she's not working hard,  so it will be easier for her right now this way.  I won't be able to hold her until the ventilator is out, so I'm just resting here.

We did find out that in CICU a parent can stay in the room and there's a couch/bed.  That was such a relief as the "caves" are full, and the RMH will only allow 6 in the room.  The 4 oldest boys went home, so we don't have the hotel room anymore, so that meant we had one extra person.  We were trying to make arrangements with a brother, and it would have worked out, but it's so nice not to have to deal with that now!

My sister is going to stop by tomorrow before she leaves, and she was able to talk with her doctor.  She'll be having surgery once she gets home.  Lisa sounded so much better today, and God is giving her much grace right now.  She was so relieved to hear that Esther was doing so well.

We also got a visit from Pastor Steve - yes, he drove down her from Bellingham today just to see us and Esther and pray with us.  Now that's a caring pastor!

Here is a photo Daryl took of Esther while I was cuddling with her, waiting for the call to go to the OR this morning:



And here's on he took just after we were able to see Esther in the CICU:



She's not really looking at me, I was just trying to stand where she could see me if she was able.

I'll try to blog more and catch up on photos of Esther visiting with her auntie Lisa as well as her cousins from Indiana!

Please pray for Esther as she goes through this critical first 24 hours - there's still many things that could go wrong, but she's made it through most of her hurdles.  And also pray that she won't get any infections or illnesses.  Thanks so much for supporting us through all of this!

she's in ICU

All is well and we should be able to go back to see her any moment.
Praise the Lord
I can not describe how relieved I am!!!!!!!!!

Esther's off the bipass...

And everything is looking great! We should hear from them again in about an hour - they still have to close everything up and work her way to CICU. The next call will be for us to go talk with the surgeons and then we should get to be with her soon after that.

Esther's on the bypass machine

They just let us know that she's doing great...that was fast!
I'm so tired I can,t keep my eyes open, so I'm going to nap until the next call.

we are waiting...

We just got the first of 4 pages, this one was to tell us that they had started and that things are going fine so far. The next page will be to let us know that she is on the heart lung machine and they see what needs to be done.
So far, so good.
Handing her to the nurse and walking away was the hardest thing I have ever done.
My sister, Lisa, will be going home tomorrow, and she hopes to come by later today. She doing well under the circumstances, but please pray that she will experience the peace that passes understanding while she waits to go home and get to the bottom of her pain.
I will post again after the next page (I'm using my blackberry to post today).

In the Garlic Press

We are hard pressed on every side, but not crushed; perplexed, but not in despair; persecuted, but not abandoned; struck down, but not destroyed. 2 Cor. 4: 8-9 (NIV)

I don't know what to say....I really thought things would not bet  getting anymore difficult  than they already are. I was wrong.

My sister is going to be heading home to California tomorrow to have some biopsies done to figure out what's going on.  I feel so bad for her.  She's tried to hard to eat right and live a healthy lifestyle, yet has had to undergo 2 major surgeries this year, and now this.  My last phone conversation with her this evening we were both encouraging eachother to not worry about this, but to trust God because we can't change anything by worrying about what might be or what might not be.

I was totally losing it earlier, and still feel like I'm on the edge, but I'm also feeling a sense of peace again.  I just know that if I get any sleep tonight, it will a gift directly from God.

My Polyanna moment (man I need t play the glad game tonight) for tonight is that I am soooo glad that she was able to come and have such a great visit with us today.  Esther was wide awake, talking to her Auntie Lisa and smiling.  Here's one of the photos I took today - you can see that Esther is really telling her Auntie Lisa all about something, and it must be something she really liked:



We had many visitors over the last couple of days, and I've got lots of photos to share, but I'm going to wait until Esther's out of surgery and I'm spending time in ICU with her (can't use cell phones, but I can be online with my laptop in there!).  So I'll catch you up then, as well as post updates as often as necessary as Esther recovers.

Quickly...

Esther's surgery is tomorrow morning.  We will walk her to the OR at 7:15 am.  We will get updates periodically during the surgery, and we should be able to see here again around noon.

Today my sister came to visit, and then headed towards my sister's house, stopping to do some shopping.  She had some severe abdominal pain, and ended up driving herself to the hospital and is still undergoing tests to find out what is causing this pain.

Tomorrow is my uncle's funeral as well.

Please pray for all these needs, and for peace for me through this difficult night.

I'll probably blog later if I can't sleep, but for now, I'm cherishing Esther!

Thanks1