Showing posts with label heart defect. Show all posts
Showing posts with label heart defect. Show all posts

Thursday, June 19, 2014

Christy's First Month Home!

Two Feet on US soil - a new US citizen!
Oh my, time flies!  I can not believe that as of this week, Christ has been in our home for a month!  Her first day in our home was May 18.  She has done so very very well in adjusting to our home!  She even acclimated to our time zone within days - faster than I did, that is for sure!

 We have been very busy settling in, finding a new routine that works for now, and getting her the medical diagnosis that we felt were important - here's a list of appointments she's had and what we found out from them:

Carese - the binky caretaker
May 20 - Pediatrician - basically got her height weight, updated our Dr with her new medical information and got her file started and a general look/see for her doctor and her.

May 22 - University of Washington Adoption Medical Clinic (3 hour drive each way!) - Dr Davies got her weight height and looked over both Christy and her latest medical documents and got referrals in place for things like cardiology, neurology, speech and physical therapy evaluations being top priority, Ear/Nose/Throat  evaluation, eye sight and hearing are all on the list too, only not critical.   She also had a myriad of blood work drawn and tested as well as stool cultures done.  So far everything has been great, with the one exception of a Vit D deficiency (we are giving her 1000 IU/day now).

She wasn't too sure about grass, but she warmed up to it!
May 27 - Pediatrician - checking Christy for cold symptoms, but mostly discussing the findings from Dr Davies and discussing referrals needed. She also got to watch Christy drink from a tippy cup and put in the feeding referral right away...told me to only feed her foods from a spoon until then (thickening everything to pudding consistency to be on the safe side).
It was hat day, or something!  Carese wanted to do whatever
Christy was doing that day!

Starting the next day, a virus passed through our family - Rachel, Elizabeth and Carese with high fevers, and I got tonsillitis, the worst case that I can remember (it really took me over a week to finally have no pain)!  Esther and Christy did not get sick at all which was totally weird!

Too stinking cute!
June 3 - Seattle Children's Hospital Cardiology/Echocardiogram -   I finally got all the answers - Christy did no only have an ASD correction like her earlier documents had said, but a very complete open heart surgery - they repaired an ASD, a VSD and an AV Canal defect.  They basically reconstructed the middle of her heart.  The echo was not as clear as they would like, but she feels that the surgery was very successful that she will not need any further repair work.  We are to bring her back in one year from now.  That was a very good sign!

Playing at her Neurology
Appointment
June 5 - Neurology - after reviewing her medical files, and observing her clinically, the pediatric neurologist has determined that Christy has brain damage.  This could have happened either when she was born (traumatic, fetal distress induced emergency C-section) or during her open heart surgery.  If it happened at or around the time of birth, then it is called "Cerebral Palsy" but if it happens later in life they refer to it as a "stroke."  Either way, it is a stable diagnosis (that means it is not getting progressively worse) but it is permanent.  At the same time she did agree that it was very promising that we were already seeing her use her right hand and arm more and more since we brought her home, and with therapy and the blessing of a home and many siblings to play with, she has great potential to gain more use of her right side and she believes that she will be able to walk someday too!  So that was great news, but I did shed a few tears as in my heart I had really hoped that it was just some pinched nerve that adjustment/surgery would correct.

All 4 in matching PJs!
June 8 - First time we were able to bring Christy to church!  She did great and we had a wonderful time introducing her to our church family.  She would not make eye contact with strangers and got a little stressed if people wanted to touch her, but she had no panic attacks and we were even able to stay after the service for the potluck!


Favorite toy - her own foot!
Jun 10 - On the 5th, I finally got a good look at Christy's teeth and immediately made an appt to see our pediatric dentist.  On this day my suspicions were confirmed.  Every molar had as least two cavities (one above each root) and she needed work done right away.  She has been referred to Seattle Children's for this and has a consultation scheduled for the middle of July, but she is on a cancellation list, so hopefully we can get her in sooner. So far no abscesses, but I am to keep and eye out for that and brush regularly.  She does allow me to brush her teeth, but I can tell that sometimes it hurts (she winces).

First Sunday going to church - all in
Matching dresses (all of which came
from a consignment store!)
That was the  last appointment so far, but in the next month we have the following:

(I have two appts for a new crown as a tooth broke last summer and last weekend it broke further...)
June 24 - ENT
July 1 - Esther's pre-surgery consultation for her dental general anesthesia procedure
July 3 - Christy - Physical Therapy Evaluation (hoping to get a referral for braces and her knees bend backwards to an alarming degree)
July 11 - Christy - Feeding Therapy Evaluation
July 15 - Christy - Seattle Children's Hospital - dental consultation
July 17 - Esther - Seattle Children's Hospital - dental surgery

Good night mommy!
So we have a busy month ahead.  We still have some things to schedule yet, but they are not urgent (like vision).

Matching PJs that were given as gifts from
Two different people in two different states!
As far as Christy's integration into our family - it has gone so very much better than I even hoped!  She really had no problems with our busy home, except occasionally if played with too long she would get grumpy, but would recover if she got some time by herself.  She loves to scoot all around the house exploring her new environment.  She continues to love reflective surfaces like our kitchen appliances. We have definitely had to do some "baby proofing" in the home, especially since she loves to put things into her mouth - she loves to chew on paper, plastic and other things....but yet she spews out things like Cheerios and Kix - go figure!



Here are some videos that I think you'll enjoy!

Christy at the UW appointment, having a great time waiting.  She LOVES mirrors, can you tell?


This was just two days ago - this is her right hand/arm that has pretty much been useless.  When we visited her last fall, she could only move it occasionally and it was usually to get you to stop messing with it.  This is purposefully using it to experiment with the toy!  This is miraculous!


This last video was taken that same day, only at bedtime.  Esther has pretty much ignored Christy until very recently.  We noticed that she showed jealousy for the first time just last week, and it was when she saw that Reuben was spending time with Christy and Reuben is Esther's favorite person.  Then, on this evening, she was actually playing with Christy on the floor and they were laughing together.  I thought it would stop when I took them to bed, but I was wrong and I was able to take this amazing, sweet video of them playing together!




Tuesday, July 16, 2013

More Quotes from Three Decades of Fertility

Three Decades of Fertility

No, no new letter yet.  But I have something just as good!  Last fall I was asked to contribute to a book about childbearing years.  The authors all have two things in common.  They have all given birth throughout their childbearing years.  Some had many children (like me) and some had only a few, with long time spans between having babies.  The second thing they all have in common is that they are women of faith.  Faith in the God of the Bible, and they each recognize that He is the author and creator of life, and that God uses our childbearing years to create us to be Christlike.



Relinquishing control (or perceived control) of our bodies to the creative work of pregnancy and childbirth has many correlations to the walk of a believer.  We have to take a back seat in order to really see the glory of what Christ is doing in us.  If we fight against God and choose to give in to our natural desire to control our lives in any way, then we are not allowing God to be Lord of our lives, and we will suffer for it.  If in no other way, we suffer from stress.  Because we are not God, we are not created with the ability to control most things, so when we try, we are putting stress into our lives.



Anyway, all that to say that this book is a great collection of stories.  Stories of faith and trust.  Stories of learning to recognize God's hand even in times of difficulty.  Stories of triumph and stories of intense heartache.  I wish all women of faith could read this book and learn of these women who have, in so many ways, "Been There, Done That."



Three Decades of Fertility will be released in paperback and E-book on July 29, Lord Willing!  You can use the banner at the top of this or the link near the top of the right side bar for ordering (I will get a commission on your order so thanks in advance for ordering using my link!  With two trips to an Eastern European to rescue Priscilla, I'm sure any extra income will come in handy!).



But without further ado, please watch the trailer below, and click on the image in my side bar to read more about this book, and get a sneak peak at some of the stories, as well as other parts, of the book!


Thursday, June 13, 2013

Three Decades of Fertility - Book to Release Soon!

I wrote a chapter for this book.  I have read many of the other chapters and they are amazing stories of God's grace and faithfulness as these women live out their lives as moms, devoted to giving the "best years of their lives" to the amazing mission of motherhood.

The book is due to release in early July, and I'll be selling it right here on my blog!


Three Decades of Fertility - Trailer from Visionary Womanhood on Vimeo.

Thursday, May 2, 2013

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.

Tuesday, April 2, 2013

How Prolife Are You?

If you are like me, you will tell anyone who asks, that you are wholeheartedly pro-life   Since I was young the thought of abortion sickened me.  Beyond that I really did nothing to promote life.  That is what "PRO LIFE" means - that we promote life.  But I didn't.  Maybe I thought I did, but I didn't.

OK, so I always voted for pro-life candidates.  That was what it meant to be pro-life, right?  That was enough, right?

Then about 8 years ago I started going to the Walk For Life event locally here that supported our local pregnancy center.  Then a few years ago we began to regularly contribute to that pregnancy center.  Then in 2011 we attended the Whatcom County Pregnancy Clinic's annual dinner.  It was a wonderful event where I got to learn more about what they do to serve the women of our county.  Last year, we heard about a town (not our town), where the pregnancy clinic got serious about defending the life of the unborn, and used media to get the word out that abortion was not the only choice for women facing a crisis pregnancy.  You know what happened?  Nearly all the abortion facilities in that county closed - they were no longer needed.  Supporting your local crisis pregnancy center/clinic is the best way to stop abortion.  Governmental laws come and go, but the law of supply and demand will always win.  If there is a demand for abortion, abortionists will be in business to supply that service.  For them, it's all about the money.  So please, support your local pregnancy clinic and reduce/eliminate the demand for abortion in your community.  We support our clinic on a monthly basis, as well as attending their events - it's not that hard,and even $5 a month can help pay for a few pregnancy tests!

Also, did you know that some forms of chemical birth control allow for fertilization of the egg, but create a hostile environment in the womb, preventing implantation?  If you, like me, believe that life begins at fertilization (egg + sperm), then using these types of birth control should be unacceptable.  We need to get the word out about this!

So I'm good right?  I fight the good fight against abortion, right? I don't use birth control that can cause abortions. I can now be content with my stance of being pro-life, right?

Girl, born Feb 2009
Down syndrome,Postoperative CHD
(VSD after repair)
Sweet little Tina! 
In 2008 I gave birth to a little girl with Down Syndrome.  We had refused all prenatal genetic testing with every pregnancy as we knew that we would not do anything different if we knew that the baby I was carrying had a genetic disorder.  But I think I always thought that it would never happen to me.  As I got older, I would have some nights of lost sleep thinking about the possibility that the baby would have a genetic disorder, but they were few and far between.  When Esther was born, we were plunged into a new world.  One of the most startling pieces of information that I read in those early days was that 92% of unborn babies diagnosed as having Down Syndrome are aborted.  I just couldn't believe it.  I checked the facts and found that they are true.  Then I also read that there is a waiting list of families in the USA who WANT to adopt babies who are born with Down Syndrome.  At that time the list had over 200 families on it!  Incredible - 90% aborted while over 200 families wait to adopt those babies.  TRAGIC!   I did what I could and blogged about this situation, trying to get the word out about this situation, but I think my impact was small, to say the least.  Chask is a US agency that matches adoptive families with children born with birth defects.

Brandon, Born November 2005
Sweet little boy who was born with CP.  
When Esther was in the hospital in Seattle I had an amazing encounter with a lady that was just plain shocking to me.  I met her in the cafeteria.  She was sitting with what looked like two young adults with Down Syndrome. As I talked with her I found out that she was a single woman (looked to be in her 50s or 60s), and that she had adopted both of them!  She also shared with me that she had adopted a third baby boy with Down Syndrome, but that he had died due to his congenital heart defect at age 11/2.  She shared with me that she had adopted the son that was with her that day when he was a baby, that he had been rejected by his birth parents due to his having Down Syndrome.  She then went on to tell me a story that I will never forget.  She share with me that her daughter was now 52 years old (just 7 years older than me at that time), and that she had adopted her when her daughter was 26 years old.  She said that her daughter had been put in an "institution" for "people like her" when she was born.  This place was a place that I was aware of when I was growing up - if you thought someone was acting stupid, you would make fun of them  and tell them that they belonged at "Fircrest."  I really had no idea what that place was about, but I knew that it was a place for "dummies" and "retards."  Man, I hate that word, but that's another blog post!  Anyway, I found out from her that this woman that she adopted had spent her first 26 years in a crib.  She had always been fed with a bottle.  She could not feed herself, walk or talk when she was adopted.  People, do you realize that this means that this was going on right here in our country as late as 1982?  That is the year I graduated from high school.  This means that we were joking around about real people my age who were rejected by their families and put in an institution, living their lives out in cribs.  I was SHOCKED!  This "young" lady was politely eating her lunch and occasionally smiling in my direction.  Her mother shared that she still had no speech, but that she had learned to communicate with signs and gestures.  This mother deserves a medal, but she'll get her reward from her Lord and Savior, I know it!  She was so sweet that the next day I got word that I had a visitor - that same lady had gone out and purchased and stuffed animal for my Esther, and she sat and talked with me and encouraged me that day.

Aubrey - Girl, born Aug. 1999
Diagnoses: arthrogryposis; mental delay
Last year, my belief that I was doing "enough" in my pro-life activities was challenged more than ever before.  I came face to face with the reality of children who were not aborted, but had been abandoned or rejected by their parents at birth, or who had been removed from their families to protect them from a dangerous situation.  God has been relentless in His convicting me of the value of all life. Even lives that have been abandoned and rejected after birth.  Here I was reading about children in terrible orphanages, many were in situations like the one I had learned about that day back in 2008.  What used to happen here in the USA is still going on in Eastern European countries.  But I also read that there was hope - that there was a movement happening in the US and Canadian. Families were stepping up to the plate and working hard to either adopt these children  or help find them families.  This was happening on Reece's Rainbow.  You know this if you've been reading my blog for any length of time. This ministry is amazing, connecting orphans to families who can adopt, and connecting families who can't adopt but can help financially with those adoptive families who need financial help to facilitate these expensive adoptions.  It's a win, win situation!

But here is where this blog post came from.  God has sent his Hounds after me.  Relentlessly bringing to mind this concept of pro-life in action.  Over and over again these thoughts run through my brain.  Can we say we are pro-life, and yet do nothing to help these little ones?  Can we say we are pro-life and yet turn away when we see a child or adult with a disability?  Can we say we are pro-life and yet stop reading about these lost children because it's too hard to read?  God keeps asking me to think about what it would be like to be that person.  Think with me about this.  These children did nothing and yet they were born with some defect that is unacceptable in their culture, or their medical care is too expensive for their family to deal with.  So, on top of dealing with health issues, they have no one.  Their hospital stays for surgeries or illnesses do not include being rocked by their mommy or visits from siblings or new toys to play with.  Their days are not spent in colorful rooms or in therapies to help them overcome their disabilities.  They lay in cribs in stark rooms with no toys, pillow, or even blankets.  Some of them only get one bottle a day, and many of them only get their gigantic diapers changed once a day.  Many of them are drugged continuously to keep them docile and quiet.  Newborn babies are left in a "crying room" until they learn that their needs will not be met, that they should be quiet and just wait for their scheduled bottles and diaper changes.
Boy, born May 2000
Frank is listed with a moderate mental delay.
He could use a family to help
him reach his full potential!

I KNOW!  You don't want to read that. I didn't want to read that.  I don't want to picture those babies crying without consolation.   So many times I have had to turn away or my heart would crumble.  Sometimes I felt like I might even be physically sick when I read about the situation these children were in.

I felt so useless.

But there was more - the stories coming out of these orphanage sound like something from Nazi Germany in WWII.  Sometimes I would find myself shutting down - I just couldn't take anymore.  But then later, God would show me more.  I would read about these children being transferred to adult mental institutions and that 90% of those die in the first year.

And then I SAW IT HAPPEN!

Children who had adoptive families, whose blogs I had read, were getting word that their child, in adult mental institutions at the ripe old age of 4, 6, 8 were dead.  They had become that statistic.  I had seen their faces, I had seen the love that these families had to their children, and yet they died before ever knowing that love. Oh, Lord God, this is killing me - I just checked the memorial page of Reece's Rainbow and  I KNOW the first three shown there - Sasha, Stacy and Declan.  Each of them precious, each of them being adopted, yet leaving this life never knowing the love of a family.  It is still too hard for me.  Please, God, preserve Priscilla until we can come and ransom her!

I still feel so useless.

BUT there's more.

It's not just the "defective" that are left to rot in orphanages over there.  There are children in orphanages that have no physical, mental or developmental delays.  They end up in orphanages for many reasons - alcoholism,  poverty, child abuse, death of their parents etc.  But once a child is no longer a baby, they become practically un-adoptable.  And the longer they live in an orphanage the more damaged they become.  But they are not ir-repairable.  You might think, "They'll be OK.  When they grow up they'll get out of the orphanage and go on to lead normal lives."

WRONG.

When these children "age out" of the orphanage, they are turned out of the orphanage the day they turn 16, with about $50 in their pocket and the clothes on their back. Most of them have had NO school.  They are not skilled in any type of work.  Over 10% of them commit suicide by the time they turn 18.  Over 60% of the girls end up in the sex trade and over 70% of the boys become hardened criminals.  But this doesn't have to happen.

At least,if you think as I did, children in the USA are better cared for.  That is true in many cases, but so many children experience the hardships of the foster care system their entire life.  I read recently that 70% of the prison population today are people that grew up in the foster care system.  Granted, the foster care system has improved a lot, but foster care will always lack the permanence that only an adoptive family can give to an orphan.  Do an internet search for US orphans, or check out Rainbow Kids or Adopt US Kids to see the children available for adoption right here in our country!

OK, so the "system" is broken beyond repair, at least it seems this way.  What can be done?

How can adopting one child make any difference when there are thousands in those places.

Well, for starters, adopting one child will change that child's world.

We can't all pick up and move to a foreign country to lobby for change.

 Not everyone is called to adopt either.  God doesn't work that way.  God calls each of His children in different ways.

But I think everyone should consider what they can do.  What God is asking them to do.  God's word shows us over and over again that He cares what happens to orphans.  Click on that link and you will read God's heart towards orphans and fatherless children.

There are so many ways that we can help.

SERENITY and ANITA
for the Joss family — WA
Some are so easy - share the plight of these children.  Share an orphan on your Facebook page and help their "forever family" find them.  Blog about an orphan.  Share the needs of a family who is in the process of adoption.  Pray for these children and these families.  Get the word out about these children and their situations.

Some take a little more work - commit to being an advocate for an orphan or adoptive family.  Donate some of your hard earned money to help these adoptions.  Create items that you can donate to auctions that benefit these adoptive families and orphans.

You will be blessed as you see God work in these lives.  I have!

Have you even thought about helping a family who does foster care, of a family who has adopted a child out of the foster care system?  I hadn't even thought about it until this week.

Maybe God is calling you to adopt, or maybe just asking you to consider it.  Please do not ignore that still small voice.

Remember, adoption is not about you and it's not about me.  It's not about getting that child you wanted.  The boy you never had.  The girl you wanted when you only got boys.

I always thought that adoption was for couples who had trouble having children of their own.  But now I see it so differently.

Adoption is about the children.

I am not adopting because I want another baby.  That may or may not be obvious ;)  I am not adopting because I want a girl, or I want a boy.  I am not adopting because I need to do this to feel good about myself.  I'm not even doing this so others will think more highly of me.

I am doing this because God has called us to adopt Priscilla.

I am doing this to expose these acts of Satan on the least of these, so that God's people will stand up against the face of evil and DO SOMETHING for these children whom God loves.

Remember that Sunday School song - "Jesus love the little children, all the children of the world...'?  It is true.  He loves them.  He wants to see every orphan experience the love of a family.

Last Sunday, our pastor preached about the gift of salvation.  All that Christ did for us.  He died on the cross to pay the penalty for our sins so that we could be made righteous.  He was preaching from I Corinthians 15.  His sermon ended with this thought - Since Christ has done so much for us, how then shall we live?  He challenged us that when we follow God's leading, we might be/will be required to do something that requires getting out of our comfort zone.  He listed losing sleep, giving up our comfort zone, using our free time, spending money (I think he said "all your money), being criticized and more. He said that it might hurt, and then reminded us that it hurt when Jesus died for us, A LOT.  Today we are not usually called to die a horrendous death for our faith, but are we willing to follow God's call when it means sacrificing something?   I took this to heart and applied it to our adoption.

You know, adoption has taken on a whole new look to me.  No longer do I see adoption as an option for couples struggling with fertility (although there is nothing wrong with this), but I see adoption as a calling.  I see it as an earthly representation of what our Heavenly Father has done for us.  We did not know Him. We did absolutely nothing to deserve His love.  He sacrificed everything to make us His child.  He loved us before we even knew He existed.  He loved us even when we were broken, defective, unlovable.  By following God's call to adopt Priscilla, I see His love working in us.  I can see His love for us in a small way in our love for Priscilla.

God says in His word that Children Are A Blessing.  He doesn't say that biological children are a blessing.  He doesn't say that perfect children are a blessing.  He says ALL CHILDREN are a blessing.

What is God calling you to do to aid orphans?  What blessing is He calling you to sacrifice for?

How Pro-Life are you?

A video I found on Rainbow Kids:

Tuesday, August 14, 2012

Contemplating Charis

Charis, pronounced "Khar-ees" is a Greek word found in the New Testament and is often translated as "Grace," "Graceful," "Gift of God" or "Gracious Gift."  It's definition as found in the Strong's Exhaustive Concordance is "The divine influence on the heart as manifested in the life."  This is where we got the name for our little baby girl, Carese.  She is the physical manifestation of God's influence in our lives.  The faith that He has granted us to trust Him.  To put our lives on the line and follow His leading where ever that may take us.  Do we ever doubt, struggle or fall?  Yes.  But He's always there to pick us up, dust off the dirt and forgive us.  When we trust Him whole heartedly, He give us gifts that we would never dream would be so good for us.  Sometimes those gifts are things we would naturally, unknowingly avoid.  Others we fear.  But God is always good, in every thing and in every way.  He has proven this in our lives through the conception, pregnancy and birth of Carese.  Let me share with you how God worked to bring her into this world.

At our church camp out last week, there was the sharing time that happens every year on Saturday night.  I began to think through my last year since that event last year and my heart was full.

You see, last year at that event my husband shared that we were expecting our 12th blessing.  We had no idea what the future held.  I was already experiencing some unusual pregnancy problems, like accelerated heart rate/dizziness.  We had no idea how the next year would go.

The first hurdle was making it thought the first trimester without experiencing a miscarriage.  I experienced spotting on almost a daily basis, along with the feeling of being very fragile - like going up and down stairs might cause me to miscarry was the kind of feeling I was having. After some early blood work, the OB (who I hadn't even met with yet) prescribed progesterone suppositories for me and the feeling of fragility went away as did the spotting.

I got to meet the OB at 9 weeks, and had an ultrasound that showed Carese's little heart beating away.  The OB was surprised that I had conceived at my age (then 47), and even asked if we had been using fertility treatments!  She said something about it being amazing that I had conceived so late in life!  She was not terribly optimistic though, as she said she wanted me in for another ultrasound in 4 weeks to confirm if the pregnancy was still viable.

She also discussed with me that it was very likely that this baby would also have Down Syndrome since I had already had a child with Trisomy 21.  According to statistics, 1 in 100 babies born to mothers who have conceived a child with T21 who are of advance maternal age (AMA).  For the rest of the population of mothers conceiving, it'a 1 in 1000 births, and for women over 40 it drops to 1 in 100, over 45 1 in 30.  So that means that it was probably 1 in 3 that this baby would have T21.  She encouraged us to have testing done, but we refused.  I shared with my daughter's pediatrician "What's so scary about this" while I pointed to our daughter Ester:



I did agree that the health issues with a child with T21 can be difficult to deal with, but that I would welcome another child with T21.  Esther is the best nature baby/toddler/child we've had yet!  We did decide that it would be a good idea to get a good look at this baby's heart to rule out a heart defect, but that was much later in the pregnancy.

The next 11 weeks went fine - I was feeling tired, but that was about it.  I did have some problems with feeling my heart beat throughout my upper body/head when lying down at night, but didn't think much about it.

Starting at the end of October I came down with a bad cold.  After 2 weeks I shared with a friend that I was so done with being sick, that I wanted to be active again, but that I felt that God was giving me some kind of message about slowing down and taking it easy...I had no idea!

At my 20 week appointment, we had the next ultrasound and also found out that we were having a girl.  They were concerned about my BP so they asked me to come in again in 2 weeks.  I did, and in the meantime I was still sick (1 month after my comment to my friend).  I was also having stomach problems that I thought might be the beginnings of an ulcer.  The OB I saw that day poo-pooed the idea.

One week later, I was working at the computer when I felt like I was going to pass out, which I did right after calling my daughter to get her help.  After being taken to the hospital in an ambulance, they determined that my sinus infection had moved into my ears and caused me to be dizzy, adding to that my stomach ulcer, I passed out.  I was told to go home and not do anything that would cause me to get dizzy again - no computer/movies/reading....nothing that causes the eyes to move rapidly!  That's some pretty strict limitations.  After getting on antibiotics and stuff, I was off those restrictions in about 2 weeks.

The following month, just after having those restrictions lifted, they determined that my BP was significant and sent me to a specialist at the University of Washington.  I was told there that I had high cardiac output and high blood pressure.  These two indicated that it was likely that I would develop Preclampsia, a potentially fatal pregnancy complication.  I was put on strict limitations - I was not allowed to do anything that would elevate my heart rate!

We also had a fetal echocardiogram to check for any heart defects, and these was something there.  The cardiologist, whom we had worked with at Seattle Children's Hospital when Esther was there for her heart surgery, saw something that could be either nothing or a small VSD.  But she said that is was so small that the worst would be that she would have a heart murmur.

So, it was amazing/miraculous that I got pregnant, miraculous that I didn't miscarry, amazing that she had no heart defect, and now it would be miraculous if the pregnancy would not be ended early (via induction) due to pre-eclampsia!  We also possibly faced having to deliver at the U of W!

Well, I was a good girl, and the meds they gave me worked.  I had to change a lot of things with the kids chores and such to basically do nothing for the next 4 months, but we made it work.  Everything continued to go fine, seeing the specialist once a month and the OB every 2 weeks until we hit the last 6 weeks.  Then I had to go in every week for non-stress tests and ultrasounds as now we face possibly placental compromise (common in pregnancies with chronic high blood pressure).

Here I am about an hour before the coded me.
I had no idea what was about to happen.
At 36 weeks, Carese started showing sign of distress, so an induction was planned.  They told us about the potential of her needing to stay in the special care nursery for up to a week or so due to coming early, but that was better than her staying put and getting weaker.

 It took a few days to get into the hospital, and then a 2 day attempt at induction, going home for one night, and then things started to progress during the second attempt (but not until after another 36 hours).  I wasn't in labor, just mild infrequent contractions on pitocin.  They broke my water and everything was fine for a couple of hours.  Then I had a gush of fluid and after that her heart rate would decellerate during and after every contraction.  The checked and found that her cord had gotten trapped between her head and my cervix.  This is not something that happens often, but when it does it's life threatening.

They called "code purple" and in about 5 minutes I was being wheeled down the hallway to the OR.  Five minutes later (5 of the most difficult minutes of my life), they came and told Daryl and our daughters that Carese was born and doing fine!








She only weighed 4 pounds 14 oz, but she was a fighter.  She had great apgar scores and was held by everyone while they were waiting for me to wake up!  She was very serious about eating, as she had no baby fat whatsoever.  She was so incredibly perfect, but so incredibly tiny!







I've heard moms lament about not being with their baby for that precious bonding time, but I did not experience any such problems.  I knew she was mine, all mine, sent straight from the hand of my Father.  A precious gift to confound the specialists and fact finders and statistics.

She did not have Down Syndrome, she did not have any heart defect whatsoever, and she did not spend weeks in the special care nursery.  I would have loved her the same if she had come to us with all of the above, but I was amazed that God would do this to confound the experts.

Throughout the pregnancy, my dear husband, Daryl, prayed for three things - the easiest labor yet (got that as I never got into labor), Carese would be perfect and that I would be an example, encouragement and inspiration to other women.  God granted all his requests.  I tease Darryl that he should have prayed for an easy delivery, but even there God knew best as now I can relate to other women who have experienced emergency C-Sections.

So, my time of being "on the shelf" was far from over back in October when I was tired of being unable to do much.  In fact, just when I started to recover from my emergency C-Section, I twisted my knee and ended up dealing with  crutches and such for 4 months.  I am now, a year and a month after discovering that I was pregnant, finally back on my feet and able to start doing normal activities with my family.  I have learned much, especially to appreciate the little things like being able to carry my sweet Esther, or making dinner for my family, or actually walking into church holding my precious miracle baby.

She is our miracle, She is our gift.  She is our statement of faith.

I couldn't imagine going through a pregnancy at my age before I did.  I would not have thought I was strong enough.  But God knew that I could with the grace that He alone could give me.

With God all things are possible.  God can do anything, anytime, anywhere.  Statistics only show us how God has chosen to act in the past, and are no indication of how He is working or will work in the future.

We are so thankful!  And I think she is too:














Monday, July 16, 2012

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!


Wednesday, June 13, 2012

And Summer Begins

With the arrival of my mother for a 2 week visit (see photos on my last post), our summer had officially begun.  We enjoyed quiet days with her - playing Uno and doing crossword puzzles with her in the evenings!

While our school year was less than optimal (mom on limited activity/bed rest/recovering from surgery/knee injury and lots of doctor appointments), our children completed their year end testing and did well - some of them skipping several grade in some subjects!  I can not take credit for that, it's just kids learning at their own rate, some years it's slow progress, and other years it's stellar!  Some kids learn to read early, other learn late.   Some kids learn to read over the course of a couple of years, others take to it like water and are devouring books their second year of reading.  Some kids struggle with math for years, and then suddenly something clicks and it's easy and fun for them.  Our philosophy for homeschooling is to teach the kids to learn.  We want our children to be capable to learn on their own.  When something catches their attention, we want them to have the skills it takes to learn about it - whether it's reading a book, doing on line research, going on a tour, joining a club/group...whatever.  When you learn something because you are interested in it, it sticks...learning facts and figures because someone somewhere determined that certain materials are the *right*  materials for a given grade level does not automatically mean that your child will do best learning that material at that age.  Our homeschooling never seems to look the same from year to year, and some years it is very minimal due to situations beyond our control that keep us in survival mode for weeks or months.

The house Rachel and Elizabeth built!
Summertime is a great time to re-evaluate our past year and plan for the next year.  Of course, we hold all our plans loosely as we do not know what the future holds (like last year - we planned for group study with me teaching in a couple of subjects, like history and science, but due to my pregnancy I was unable to follow through with that plan).  To play it safe this year, we are going to return to Switched On Schoolhouse (SOS) (computer based Christian School type education) for most of our school aged children.  Elizabeth and Dayton will be doing traditional learning for reading/writing/math for another year.   For Rebekah this will be her last year in school officially. Since we haven't been using this curriculum for her recently, we are going to do the same thing we did with Jason and Jessica for her last year in school - she gets to select the courses she is most interested in for each subject, and that will be what she will study for this year (for example, she can choose between Government/Economics (12th grade), American History (11th grade), World History (10th grace) or World Geography(9th grade)).  If she works hard and completed any subject early, she will be finished with that course!  Jason chose to finish his last year once subject at a time, and that worked great for him.  Jessica did the more traditional approach, using the SOS program to schedule out her daily work and completing it through a more traditional school year.  We are planning to use Math-U-See for math for the other children doing SOS, and selecting one subject in SOS for all the kids to study together for History, Bible, Language and Science, instead of choosing it according to age/grade as the rest of the children are close enough in grade levels  that this will work and have the advantage of their being able to help each other and be learning the same information/completing the same book reports and such.
It's Esther size, but they all enjoy it!

So enough about school on a summer blog post!

What does our summer look like? So far the children have been working very hard around here on large projects like weeding, rototilling, clearing out brush and soon will be putting in new lawn outside.  On rainy days they have been doing the spring cleaning (they got the downstairs finished last week).  I have not been able to be of any assistance due to my knee injury and caring for Carese.  You may be wondering how in the world we have been able to get our children to accomplish such great feats, and I'll tell you - BRIBERY!

Last April Daryl and I attended the Christian Heritage Homeschool Conference and we were shown a long trailer for the movie "Captivated."  It inspired us to severely limit our intake of media.  We shut down all our electronic games (Wii, Xbox, Facebook, computer games), and packed up all our videos into the attic.  This has led to quiet evenings doing crossword puzzles, lots of board and card games being played, and lots of outdoor fun - including the kids building a house out of mill ends!
Esther hanging out with her Daddy
 at Seattle Children's Hospital
We decided that we would reserve having a movie night as a reward for work done.  So we compiled lists of things that needed to be done around our place, inside and outside, and broke it down into "projects."  So far they have earned 3 movie nights - complete with pizza and popcorn!  There's still lots of work to be done, but things are looking so much better around here.  The amazing thing is that it's getting done without my help and I don't even have to encourage/nag them to get it done!

June's calendar is blissfully empty!  We took Esther down to Children's Hospital for a cardiology check up this past Monday (you can read about it on Esther's Story).  We started the summer reading program at the library today, and the kids have spend literally hours reading today..they want to win the pass to the Birch Bay Water Slides like nobody's business!

July has every weekend booked - BBQ on the 4th, Daryl's work camp out, my 30 year class reunion, my family reunion and our week long camp out that ends with the church camp out!

The girls goofing off on the way to the library!
August looks pretty boring, but I am hoping that we can get away as a family camping once more this summer, possibly up to Salt Creek (just past Port Angeles) or Baker Lake (our two favorite camping places).

Serious reading after our visit to the library!
I am planning on using at least some of my extra time this summer to invest in our home business - I'm developing a new infant multi-size diaper right now, but my main focus is building our inventory now that our business debt is paid off.  I am still very limited in my activities due to my knee injury, but I can get things done if I do it bit by bit.  As far as my knee injury goes, I did go to see a orthopedic surgeon and he hopes I can avoid surgery by doing the PT exercises and icing it two to three times a day (this is getting old), but I am scheduled for an injection to reduce the swelling if it hasn't gone away by the first week of July.  So far, it was improving until I spent too much time standing a couple of days in a row and now I'm paying for it...learned that one the hard way as it doesn't always hurt when I'm doing something I shouldn't - it hurts later!

And, finally, an update on our newest little Einfeld!  Carese is 3 months old, and as of last weekend she has passed the 11 pound mark!  She's still tiny, but she makes her presence known around here.  She has learned to smile and talk.  Her latest accomplishment is blowing bubbles.  She is learning that she has a tongue and by playing around she makes bubbles!  It's weird, but so cute!  She also loves to bounce when you hold her in a standing position - never had such a little one enjoy bouncing like that!

She's so nice to her old mom - she sleeps at least 6 hours every night, waking only once around 3 am for a night feeding.  I have finally achieved enough milk that she was only getting about 12 ounces a day of formula, but starting yesterday I am not giving her formula after every feed, and so far she's been feeding a little more often, but I have only had to give her 1 ounce yesterday, and the girls gave her 2 ounces this afternoon so I could get a nap.  She is so much happier when she doesn't get a bottle, so I'm going to keep working to keep up my milk supply for her.