"Her Heart is Repaired"

Esther sporting pigtails on a Sunday!

Esther, Carese, Daryl and I went down to Children's yesterday for her cardiology appointment.  It's been 2 years since her last appointment!  We left very early (in the car at 6:45) in order to drop some elastic off for a seamstress to pick up, accommodate feeding Carese on the way, and making one stop to get sun glasses for Daryl.  Even with the careful planning and not having to feed Carese until we got to Children's, we just made it with enough time to change her into her nice clothes, comb her hair and put on her braces/shoes before her 10:00 check in time!  I ended up nursing Carese (under my nursing cover of course) while getting our IDs and checking in!

Carese and Esther did amazingly well on the way down.  Carese mostly slept, waking up just before our stop to get sun glasses, so we were able to change her diaper and get he dressed then (I had only changed her diaper before we left, in hopes that her outfit that I'd picked out for going to Children' would still be in great shape when we arrived).  Esther played quietly in the car with her Jessie doll and looking at books.

Once at Children's Daryl got the job of chasing her around, and did he ever have to work to keep track of her. With all that sitting quietly time in the car, she was ready to run and investigate!  The weird thing was that she seemed to know exactly where to go every time we moved.  She even went straight for the "purple doors" that lead to the cardiology wing...but it's been 2 years since she was there!

Her first appointment was for her echocardiogram of her heart.  This is basically a detailed ultrasound of the heart, checking for any possible leaks or problems.  This take about 1/2 hour and she has to lay on a hospital bed during the entire procedure.  She did marvelously!  They do have a TV up high on the wall and allow the parents to select a video for their child to watch.  We picked a cute looking computer graphic cartoon (cute characters, bright colors, but we soon found out that the morals and language was not the best), and it did help a lot to keep her distracted.  Esther's Jessie doll (from Toy Story) was her constant companion, and she also watched the video as well as danced around to entertain Esther (Esther loves to make Jessie tap dance on any surface, as well as having her read books or reading books to Jessie...but her favorite thing is to make Jessie dance with and kiss other dolls, especially the man rag-doll that Rebekah made for her).

After the ultrasound, we headed over to the cardiology room for her EKG (a dozen wires attached all over her body) and she was quite  concerned about this, but she made it through without too much trauma.  Next was getting a blood pressure reading and then a Pulse-Ox reading too.

Next was waiting to be seen by the nurse.  This took about 20 minutes, and required that we pull out my Iphone and let her watch The Incredibles for a while.  The after another 20 - 30 minute wait (during which Carese went to sleep), we finally got to see our favorite Cardiologist, Dr Kemna.  She had cared for Esther all the way back when Esther was home the first time and was going to Children's every two weeks, as well as being on rounds during one of the weeks that Esther was staying at Children's before she had her open heart surgery. Dr Kemna took one look as Carese and said "you are a brave woman" - too funny!  We really like Dr Kemna, especially as she explained to us that Esther heart is completely repaired, unless someone knew that she had undergone a repair, the repair would not even be noticeable in any tests!  She said that Esther didn't need to be seen again for 3 years!  Hooray!

We then went to the cafeteria, as we were all getting very hungry, and had a snack or yogurt and chips.  The last stop was to go up to the lab and get a blood draw for Esther's thyroid screen.  Her pediatrician is now in charge of monitoring her thyroid instead of having to see a specialist (if anything shows up funny, then Esther will go see the endocrinologist again).  This requires having her blood tested every 6 months (down from every 3 months now, yay!).  Since we were at Children's, and they have the best phlobotomists in the world there, I had the lab request send down there and got it taken care of there!  It went well, as usual for Children's lab draws.  During the "poke" Esther was understandably upset, saying over and over "I'm OK, I'm OK" while tears were forming and running down her cheeks.  At one point, she leaned her head back onto Daryl's shoulder and snuggled with him...it was so sweet (wish I had a photo, but I wasn't expecting a photo opportunity during a blood draw).

One note about our time at Children's - everywhere we went, Esther got attention for her cute antics (Jessie went everywhere with her and tap dance for more than a few observers).  Carese was also the recipient of many oohs and awes as she is still so tiny.  Most little babies at Children's are shrouded in their car seats, leaving one to only wonder as to why they needed to be at Children's.  I'm afraid Carese just shouted "healthy newborn" there.

After that we were free to head home, but not until after we stopped to have lunch at the famous "Dick's Drive-In".  Esther was asleep before we were even half way to there.

With full (heavy) stomachs, we headed home.  Our only stop was at a rest area north of Marysville.  We took care of diaper changes and feeding Carese in the shade (the car was quite hot as we were driving our Camaro on a super sunny day, and the Camaro has lots of windows and a black interior - the AC doesn't work anymore).  Of course Jessie came along and found that the cement picnic table was a wonderful place to tap dance!  Esther enjoyed some free cake from the free coffee stand there, as Daryl and I took turns making a stop at the bathroom.  It was such a wonderful break in our day - peaceful, shady and with a wonderfully cool breeze to enjoy!

Our next stop was home, where I went for an immediate nap and Esther enjoyed playing with her siblings.  A very tiring day, but it went even better than expected, that is for sure!

Lastly, Esther got her first majoy hair trim a  couple of weeks ago - all her hair is finally one length!  It was a major improvement as you can see:

A Day in Esther's Life

Here is Esther all ready for the day,
with the latest headband to keep
her old glasses in place

I thought you might be interested in hearing about how Esther usually spends her day.  Granted, this is a perfect day and lately they are few and far between (I've been down with a sinus infection for 7 weeks), but it gives you an idea!

Wake up at 7 am, cuddles and juice with her medications in the juice (thyroid and vitamins), diaper change (or on a good day, we'll have her sit on the potty), and her glasses are put on.

8 am is breakfast with the other children, she self feeds and loves to participate in prayer time!

After breakfast she gets dressed (she needs lots of help with this) get's her hair brushed and her glasses on (if she isn't wearing them yet) and gets her braces and shoes put on.  If she has a cold, she also gets a breathing treatment at this time, and she doesn't mind this as long as there's something PIXAR playing on the TV!

Esther loves playing with baby dolls
- but she usually takes their clothes off ;)

I do some therapy things with her - reading a book together, trying to learn new words/signs, threading large wooden beads on a shoelace, playing with a shape shorter toy, naming body parts, reading a book with animals and learning animal names and sounds.

Here's Esther helping wash dishes!

During chore time she usually helps a bigger brother or sister, putting things away, or maybe making another mess for them to learn to teach her to pick up behind herself!
During school time, we try to have her play quietly or color in coloring books.  Our biggest challenge right now is getting her to consistently wear her glasses, and trying to find them when she takes them off any old place.  I'm trying to teach her to give them to me when she takes them off and I've a little success with this.  She recently got new glasses that are much easier on her so she wears them longer.


The rest of the morning is pretty much free time for her - to play with her toys or siblings or just hang out with mommy.
At lunchtime she is fed and gets her second juice (we found out that she is milk intolerant - we are trying out lactose free milk, but haven't figured out if it works or not yet) and some yogurt.  If she needs it she gets another breathing treatment at this time.

Here is Esther playing with ponies
 - she's making the kiss!
As you can see, she goes cross eyed
when not wearing her glasses
and trying to focus on something close.

After some play time she goes down for her nap at 2 pm and is allowed to sleep as late as 5 pm, but we wake her up then if she's still sleeping so she can be ready for dinner.  She gets another breathing treatment before dinner if needed.
When daddy gets home she gets excited and will often sign to us the I need to go greet him with a hug, and she'll usually give him a hug and ask to be picked up.  She's really getting fond of her daddy!
She loves to climb up to the dinner table once it's set and "re-organize" things...and is usually very ready for dinner.  She is not a fast eater and likes to warm up to her food, often pushing it away at first and then taking it back when she's ready for it.  She is usually just getting into the swing of eating when we are done, so she continues to eat while we have family devotions.
For the rest of the evening she plays with her siblings or watches a movie snuggling with mommy or daddy.

Esther is so used to her breathing treatment that
she will usually hold it for herself!

Around 8:30 it's time to get ready for bed, which includes getting on pajamas, removing her braces and shoes, a breathing treatment if needed, brushing teeth (she doesn't like this, but she tolerates it if you give her breaks).  Then I put her to bed, and we pray together.  I kiss her good night and say what I've said to all the kids for over 25 years at bedtime - "Good night, I love you, See you in the morning".
She is usually a good sleeper, but she quite frequently decides to leave a little gift in her diaper after being tucked in for the night, and she will refuse to go to sleep until her diaper is changed...otherwise we usually don't hear from her again until morning (unless she's sick and wakes during the night needing meds/comforting).
Life for Esther has been not very consistent while I've been sick, but now that I'm feeling better I am going to try to get her/me back onto her normal routine.  But that will only last until she becomes a big sister (Carese, Esther's little sister in hiding,  is due to join our family around April 2nd).  I do have her routine posted on the dry erase board, so it is possible for the girls to do everything for her, but with me out of commission for a while, things will be out the normal for her for a while, to say the least.

Esther cuddling with Mommy, using my baby belly as a pillow
- Carese will usually kick Esther when she does this!

Esther's Photo Shoot!

I submitted an application to see if Esther could be included in the 2011 Smiles Calendar and she was accepted back in June.  Last Friday we met with Amy and Lesley for Esther's photo shoot.

When we got there, the photographer was not there a her camera had not been working properly and she had to go home to get her back up camera.  So while we waited, we did our own little photo shoot:

Jessica and Esther watching the boats - this photo is my favorite for style...

More boat watching

Esther gives THE BEST HUGS in the world!

And she is so stinkin' cute!

Esther being a little uncooperative, but she did quite well and was even adorable photogenic at times!

Sisterly Love...so sweet!

I think she was trying to take big steps just like her big sister!

Second Chances

Everyone needs second chances, I know I do.  I had to give someone else a second chance today and it was sooo worth it!

When Esther was just teeny tiny and we were trying so hard to get her home from the hospital, I had one of the worst days, I was so disheartened.  I wrote about this day in a post entitled "It's Sooo Hard" and I talk about an encounter with the pediatrician who was caring for Esther during that time.  Every 3 days or so we'd get a new pediatrician and see saw back and forth as to what is would take to get Esther home.  I was very offended at a remark he made and have always held this against him.

Until today he's never been the on call doctor when I needed to take Esther (or any of the children) in to be seen when our doctor was not available.  I always ask who's on call, as I prefer to have Esther seen by a doctor who has seen her before when she is ill.  When I heard who was on call, Dr F I'll call him, I almost decided to wait, but Esther really needed to be seen again and soon.  So I decided to make the appt anyway.

But first a  little more background to set the stage for this second chance.  Children with Down Syndrome tend to have very tiny everything - fingers, toes, heads, forearms, upper thighs, blood vessels, ears, airways and ear canals.  Esther has typically sized things for all in the list except the internal ones.  And her ear canals are tiny - and one is exceptionally tiny.  Since she was just a baby she has HATED to have anyone, even me, mess with her ears at all.  Don't even go near them...when a doctor holds the otoscope she starts to cry and tries to hide.

Until Today.

As I was waiting for the doctor to come into the room, I could hear him talking in the room next door and in my room was a battle....no, Esther was quietly snuggling in my lap (a sign that she's really sick as she's usually trying to escape out of the room).  The battle was in my mind.  I was so ready to have an attitude when he came in.  But I kept reminding myself to think on "whatsoever things are true..." and during the time we worked with Dr F before I was sleep deprived and in a very difficult situation to say the least.  I kept reminding myself that I had heard from others that they just loved him and that he was so good with children.  I forced myself to be pleasant, friendly and "pretend" that we were seeing him for the first time - I reasoned also that he sees so many babies that he probably wouldn't remember us anyway!

So, in he walks - he immediately focused on Esther, saying "hi" and getting her to interact with him.  While he and I talked he was gently warming up to Esther...by the time he was going to listen to her breathing, she was starting to get a little concerned, but he comforted her and talked to her and before I knew it, she was sitting quietly while he listened...she has been doing so much better lately, that I chalked it up to getting accustomed to the procedure.  Then it was time to look in her ears...I braced for the battle...he started talking about birdies and doing little whistles (this has been tried and met with failure by several doctors in the past), but his whistle was sweet and bird-like.  And then the miracle happened - she allowed him to look in her ear while she sat quietly...I was dumbstruck...but that ear canal was larger and more accessible, the left ear will be different, right?  Kind of - she fussed a little, and he just put light pressure on her head and she calmed right down and let him look into her ear for a good long time!  Even then, he only got a half glimpse of her swollen, pink ear drum, but enough to confirm that the antibiotics she was on were not doing the job.

So, the moral of the story?  We all need second chances!  We all need to give others second chances - we might be the ones missing out on the blessing if we are bitter or holding onto resentments.  And we are definitely the ones suffering when we do that, as bitterness and resentment do the most damage to the ones holding onto them!

And  here's eye candy - first a photo taken the day before my "first encounter" with Dr F:

Esther - 1 week - with a feeding tube and oxygen

And here's Esther last week at her daddy's softball game:

she loves going to the softball games - she loves to clap whenever anyone claps!

What to you think - would Dr F have recognized her???

Pregnancy Loss and Fear - do they have to go hand in hand?

I have had so many women email or talk to me about their pregnancy loss since I posted about Johanna, and I would like to share with you some of my thoughts about dealing with the fear women face when they think about going through another pregnancy after pregnancy loss.

Many women who have experienced pregnancy loss, deal with fear - fear of future loss, fear of personal guilt, fear of death, fear of loss of health, fear of the hardships of pregnancy as they get older, and fear of birth defects (especially those, like Down Syndrome, that have been linked to advanced maternal age).  I'd like to address these fears, especially how it should be viewed as believers.


If you are a believer, then you should know the verses about worry.  I was just studying them in my quiet time this morning (I am doing a book study on "Loving God with All Your Mind" by Elizabeth George.  The Bible has much to say about worry, such as "do not worry about tomorrow for tomorrow will take care of itself" (Matthew 6:25-34)and  "do not worry but with thanksgiving in your heart make your petition known to God" (Philippians 4:6)...etc and so many others - check this list out.  


When you struggle with fear, you need to remind you of what is true - "whatever is true....think on these things" is a command!  Remind yourself that God knows your tomorrow, He knows your strengths and your weaknesses.  He tells us in Jeremiah 29:11, "For I know the plans I have for you,” declares the LORD, “plans to prosper you and not to harm you, plans to give you hope and a future." Remember that God is the giver and taker of life - He numbers our days, and those of our children, before even one of them comes to be (Psalm 139:16).  

Remind yourself that God gives strength to the weak, and comfort to those who mourn.  He does all things well, and He never makes mistakes.

Remind yourself that if it is in His will for you to carry another eternal soul, whether or not that child is born healthy and full term, He will give you the strength for each day through the journey, I can guarantee it - if you are living in His strength and not trying to do it in your own strength.


I love this quote I recently heard - "Pregnancy is momentary, a soul is eternal" I heard recently (Doug Philips was quoting someone else, I believe).  What other things can we do in this life that has eternal value?  And remember to, what Paul said about affliction in II Corinthians 4:17 - "For this light momentary affliction is preparing for us an eternal weight of glory beyond all comparison", and I will openly admit that pregnancy for me would often be put in the category of affliction.  


So many women are concerned about pregnancy in later child bearing years, that it is "risky", that the likelihood of having a child with birth defects increases with age.  Yes, the statistics show this, but you have to remember that God is not bound by our statistics...our stats only show us how God has acted in the past, but He is free to do whatever He pleases at any time.  If He chose, every baby born in America tomorrow could be born with Down Syndrome...He is that powerful.  


I have also heard of mothers who are concerned about their own life, should they become pregnant again.  I, myself, could face this if I were to get pregnant again.  But remember that God has numbered our days before we were born...nothing can take us out of this world "before our time".  We are to take good care of the gift of our life, not to do things to jeopardize our health, but does this apply to pregnancy?  I think not, because I believe that God is the giver and taker of life.  I would rather die carrying a precious soul for my Lord, than live one day longer fearing the "what ifs".  I could avoid pregnancy like the plague, and get hit by a drunk driver tomorrow.  My life is in God's hand, and I choose to trust Him with all that I am and all that I have.   I do believe we are to be good stewards of our health, eating right, getting exercise, taking nutritional supplements, avoiding things that can compromise our health, but even if we are having health issues, God is still sovereign!


What about how hard pregnancy can be, especially in later childbearing years.  But I ask you - should we avoid all things that are difficult/painful?  I put this into the category of a trial, and James says that we should "...count it all joy when you fall into various trials, ³ knowing that the testing of your faith produces patience. ⁴ But let patience have its perfect work, that you may be perfect and complete, lacking nothing. ⁵ If any of you lacks wisdom, let him ask of God, who gives to all liberally and without reproach, and it will be given to him."  I think this is a great scripture to claim when facing a potentially difficult pregnancy, or when you are in one.  Also, Paul says in Roman's 8:28 "all things God works for the good of those who love him, who^[a]have been called according to his purpose"  No matter the outcome, we must claim God's promises and apply them to pregnancy as well.  What better thing to bring us to our knees in weakness, claiming God's promises and living in His Strength.  God can and will use pregnancy in the lives of women to bring Him glory, and to bring about good in our lives.  

I know about difficulty carrying babies later in life - I have carried and birthed three babies since I turned 40 (I am 47 now), and when I could not go on, God's grace was always sufficient...I had to make many adjustments (and my family did too) and lower my expectations of what I could do each day, but it was so worth it, every time.  Do I ever fear getting pregnant again?  Yes, I am at times fearful, but I try to catch myself every time I begin to think about the "what ifs", and to dwell on what I know is true, and the fear vanishes.

One last thought about fear/worry in our lives - I have come to believe, that when we worry about the "what ifs", we are taking on tomorrow's problems.  God does not promise that His grace is sufficient for the "what ifs" - but He does promise in II Cor 2:9 that "My grace is sufficient for you, for my power is made perfect in weakness" and in Phil 4:13 "I can do everything through him who gives me strength" - He will give us the strength to do what He asks us to do, and the grace needed for each day.  When we worry about the "what ifs" we are facing potential trials on our own...and that breeds debilitating fear - I know, because I have done this, and I do not recommend it at all!  

I recently heard an amazing talk given by Doug Phillips (Vision Forum) and he suggested that it is possible that God uses miscarriage to populate heaven - also that it might be that in His mercy, He brings our little ones into the arms of Jesus before they see this world - they never have to suffer pain, sickness, fear, consequences of sin and all the other evils this world has to offer.  And having our unborn child precede us to heaven also makes heaven a sweeter place that we mothers will yearn for all the more for the hope of seeing our little ones there for the first time!


I realize that I may have stepped on many toes out there, and that what I have shared might offend some.  But I have learned so much through the difficult times that my loving Heavenly Father has brought me through - and many of those difficulties relate to pregnancies.  So many of the truths of scripture can be applied to pregnancy and pregnancy loss if we just meditate on it.  If your hackles were raised by what you read today, take some time and read through the passages I listed here and talk to God about your questions.  I have found in my life, that when something really gets my back up, I am usually either dealing with un-resolved guilt, or have been fighting against God in something He is trying to teach me.


I would also like to share with you, that when I meditate on the truths about God and His promises, fear seems to vanish...I have said before that where there is fear, there is no faith, and where there is faith there is no fear...they just don't go together.  


Philippians 4:6 - 7 pretty much sums this up - "do not be anxious about anything, but in everything by prayer and supplication with thanksgiving let your requests be made known to God. ⁷And the peace of God, which surpasses all understanding, will guard your hearts and your minds in Christ Jesus"


Let me leave you with this:

I found this at an Etsy Cart - and you'll find the full lyrics to this song:

And watch to this, but you'd better get a box of tissues first.
(and you might want to get her book I Will Carry You: The Sacred Dance of Grief and Joy)

If the Lord asked you to carry a little one for Him, would you do it gladly?

I pray that the Lord will use my thoughts to draw you into the peace of resting in His promises for all the things in your life.

In Christ,

Ruth

for your viewing pleasure

Some photos of life around here over the last week or so:

Home Made Pizza!

And Crazy Bread

Silly Kitty, Sinks are for Kids!

Remind you of anything?

Happy Birthday Elizabeth

Thankful week #2

OK, so I am not getting time to blog everyday...that's just not realistic for me right now...so I'm going to post occasionally what I am thankful for during this month of Thanksgiving!  I'll post some random photos between my thoughts on what I am thankful for this week...but I reserve the right to post more often than once a week ;)

Elizabeth fell asleep reading Calvin and Hobbs...
wonder what she dreamed of that night???

I am thankful for a church that believes in the inerrancy of Scripture - Christ Alone, Scripture Alone, Salvation by Grace Alone...and doesn't pussy foot around the truth to tickle our ears...

Esther loves her rocking chair and reading!

 I am also thankful for God working in me and through me to minister to other women...speaking the truth in love, having empathy for trials they are having that I have gone through, and a God who hears our prayers for others and always answers them (maybe not the way we expected, but He always answers them)

Did I say she loves looking at books?

I am so thankful that God has blessed us with 11 wonderful children, all sovereignly chosen for me by my loving Heavenly Father and brought into our family in His perfect timing.   I am so thankful for my friends who were willing to speak the truth to me in love about God's sovereignty and trusting God for our family planning so many years ago - in my weak, frail and finite human understanding I could not have imagined caring for, teaching, feeding, and loving 11 children, but I would not now want to live without any one of them!  Placing my trust in Him was a huge turning point for me - one of peace knowing that I didn't have to "worry" about planning our family anymore...you just can't understand this until you do it...do I struggle at time with leaving it in God's hand?  Yes, but that is when I lose that peace that God gives when we place ourselves in His loving hand to do with as He wills.

Esther loves board books, can you tell?

 I am thankful for days that I do not have to leave home...more time to love on my kids, cuddle with Esther, enjoy watching Jessica's horse graze in the front yard, enjoy my morning coffee slowly (had to nuke it I took so long)...and have friends over for coffee, knitting and great conversation!

Did I say she loves to sit in her rocking chair?
She looked a little hippy yesterday, but it was just too cute!
And her hair - it's getting so long!

 I am thankful that God gave me a blessing I would not have chosen for myself or our family - a child with trisomy 21...yet He gave us exactly what we needed...a blessing in disguise!  She is the light of our home, and laughter in our ears, and the hugs around our necks...I can not imagine life without her!

what can I say?  Our kids are a little goofy at times! 
Reuben is always ready to make us laugh, that is for sure!

This is what I get to do every night - check on sleeping Esther,
make sure she's snuggled and warm, and just love the sound of her soft breathing!

What are you thankful for that you would not have requested from God?  Something to think about!