the anatomy of open heart surgery

In early life, Naomi did not look very well when sleeping…pale lips, purplish around eyes and under nose…glad I took her to Children’s emerg…her O2 sats were actually good…her heart had figured out a way to keep things going well…but at emerg. they heard her heart working hard and found her heart enlarged on an x-ray…so referred us quickly to Cardiology a few weeks later.

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I’m acquainted with biological terms, due to studying Biology in undergrad. and post-secondary studies in Biochemistry & Molecular Biology.  And, I greatly enjoyed learning about Human Anatomy and Physiology!  So, when we had some initial visits with Naomi’s Cardiologist at the heart centre, who explained Naomi’s blood flow problems, I caught myself saying “interesting”!  But, in fact, the anatomy had now become personal (and scarey), no longer textbook.

Before her open heart surgery surgery, at the end of July 2014, when Naomi was just 3.5 months old, we had to go to the heart centre for a full day of appointments and preparations.  Lots of scarey things were said…the cardiac surgeon mentioned all the risks…like ALL of them…things like…

…risk of HIV 1:2,000,000 (from blood used to prime the heart/lung machine since babies are so small they need some extra blood…and parents can’t donate since they found it can cause a rare blood disease)

…risk of not getting off the operating table 1:200 (about the same risk of her having Down Syndrome)

…and on and on it went…until I said “I’m not following you anymore”…and the Dr. took a breath…and then went right on with all the risks of everything that could go wrong…and the staff in the room laughed…it was good stress relief to laugh…(the Heart Centre nurse had warned us that this surgeon would go through ALL the risks…he rattled them all off from rote memory…)

He also said he was not sure what would happen when they closed the holes in her heart, if her lungs would “clamp down”.  If that happened, they would have to leave it open, and then try to close it later.  Unsettling.

A wonderful nurse showed us a photo book of a girl who had DS and went through heart surgery–her mom had chronicled their daughter’s open heart surgery through photos.  It was good to see a photo of the ICU for some advance preparation, and then wonderful to see her healed up chest and living a normal life at the end.  I hoped that would be our story too…but good outcomes are not guaranteed.

So, here’s a window into our journey with open heart surgery…

Naomi was a bit tired…later, I realized she was often tired after being in the infant seat…maybe she was too scrunched up and not getting enough oxygen…mom’s heart always worrying.  So tiny…the last photo of her bare, unscarred chest.  Glad my sister in law visiting from Ontario had agreed to take some photos of her before her heart surgery–didn’t realize until later what a big request that was–thank you, dear!

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This is after I gave Naomi some sleepy medicine.  She was pretty kicky, but eventually seemed to get very sleepy.  Serious glazed look on her face.

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When the nurse took her away, she looked like such a cute little package.  What a little sweetheart.

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We were left alone in room.  They closed the door, then my husband broke down, and I gave him a big hug.  I looked at the empty stroller/car seat…and it seemed so empty…it finally hit me.  We walked into the hallway and went to a private waiting room.  Along the way, we saw the woman–the hospital orderly–who had just carried Naomi to the operating room, but she also did not have Naomi anymore.  Where was she?  Somewhere behind the walls…we had no idea.  I really just so much wanted to see her!

In the private waiting room, we closed the door.  I read a pack of index cards given to me by our Pastor’s wonderful wife.  She had handwritten out a bunch of verses.  I read this verse:

Psalm 23:5 (New King James Version)

You prepare a table before me in the presence of my enemies;
You anoint my head with oil;
My cup runs over.

and later found it to be very important…

(this verse set to a triumphant song of praise played in my mind… [track 2, Psalm 23]

http://nrkids.wix.com/ridgekids

…as I faced some very difficult moments post-surgery, where I had to fight for Naomi, so she would have sufficient oxygen saturation in her blood…they kept trying to wean her from an oxygen line too early…when all she needed was just some more time…and just the tiniest amount…and without it, her O2 sats would start on a downward trend).  I tried to focus on reading the Bible verses or praying, but it was hard to concentrate.

While praying, I had my eyes closed.  I saw a room that was dark, pitch dark but there was a round lamp shining light over the operating table where Naomi was lying.  There were a couple people in blue scrubs.  Everything was calm.  I was surprised the room was so dark, since I thought operating rooms were well lit…as I had been in one during the birth of my first daughter.  I recall seeing some kind of instrument going toward her chest cavity.  It was a sort of stick with some kind of pale brick red plastic on the end of it (which looked a bit like something my brother likely had lying on his bedroom floor when he was in high school…along with other nifty electronic do-dads…like diodes with coloured stripes…and green circuit boards…which I guess the goal was to solder together to create electronic circuits.  So, I had no real interest in all this electronics business…other than to avoid stepping on those sharp pieces in his room…and to think it was very impressive that he could put those pieces together!  So, I remembered what those pieces looked like…and just googled to find out what that familiar looking piece was called.  I found this video: https://www.youtube.com/watch?v=c-bX239OK3c  and, learned that the piece is called a capacitor which looks like this:  http://electronics.howstuffworks.com/capacitor2.htm So, on the end of the “stick”…it looked something like the semi-rounded shape of a kind of red brick capacitor.  And, then what I could see in that vision ended.  If someone knows what that was and why the operating room was dark, let me know. 🙂

I apparently fell asleep at some point, having hardly slept that night previous while trying to ensure we had everything ready for the week long hospital stay…I was startled by the sound of the pager going off.  My husband was casual, now it was my turn to lose it.  WHAT???!!!  But, it was only 3 hours.  They said it would be 5 hours.  Faith all gone…SOMETHING MUST HAVE GONE WRONG!  My heart was pounding.  I jumped up and paced to the bathroom.  We waited what seemed like FOREVER for the surgeon to arrive with another staff member.  He said some stuff…and I said it seemed to have gone very quickly!  And, he said, nonchalantly that everything went really well.

Soon enough, they wheeled Naomi in her hospital bed into the ICU and set her up.  They invited us in to see her.  We walked in and I didn’t know where she was.  I heard a sound…like a dry, scratchy, drowsy yell…I stopped, not walking further.  She look so different with all the tubes and wires attached.  I was afraid to walk closer.  A nurse said we could come closer, but were to not touch her too much, as they didn’t want to excite her too much.  I asked why she was making that noise?  Spikey blond and multiply-pierced Nurse Jo said “she’s basically stoned”.   After all the stress, it was such a bizarre statement, that we laughed.  But, it was difficult to see my child like this.  I’m glad we had seen some photos in advance of a little girl who has DS going through heart surgery.

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I was afraid to pass on germs in Naomi’s fragile state, but I’m glad Matt grabbed her wee fingers.  I passed the time by talking to “Nurse Jo”, and learned a lot about her life, how she turned vegetarian and couldn’t stand the smell of barbeques during summer…I forget the word she used…something like “carnage”.  (Meanwhile, heart surgery can perhaps feel like carnage, even though it’s not–all for her good, to give her a longer life.)

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Naomi had a thickly folded flannel sheet on her chest, and “Nurse Jo” told me I could pat her chest quite hard to help calm her.   I saw above Naomi, the round light.  I asked Nurse Jo if that was the kind of light they had in the operating room and she said yes…the same one I saw when I was praying.

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Tubes, tubes, and more tubes…a nurse drained the chest incision site…she watched the numbers of the monitor for all sorts of things…she kept a steady eye on her one patient…and then a shift change with another nurse…and then another…

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And, then we had to leave her.  We were exhausted, and no place to sleep in the ICU.  Since we did not live far enough away, we could not stay at the Ronald McDonald House, but we were blessed to be able to sleep over at my brother and sister-in-law’s place in the same city.  And, on the drive there, we saw this…it’s a blurry image, but will have to suffice…we saw a bright shining cross at the top of a church steeple in the night sky.  A great visible reminder of God’s love for us, in the midst of a very stressful time.

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The next day, we came back to the ICU, until, we could all go to the ward.  Naomi was again wheeled out on a bed…into the elevator.  Finally, we could escape the commotion and intensity and dim lighting of the ICU.  On the ward, there was window in the room (but it would not open) and we had a small single cot to lie on (albeit very uncomfortable..but a dramatic improvement from the ICU) and a place to put our stuff for the hospital stay and our own room with less alarms going off…and a door to shut out some noises…and some peace until the next person walked into the room to check on Naomi…or until the next round of doctors walked through in a group to talk about the case–it’s a teaching hospital after all–so lots of people involved…or until an alarm bell went off.

And, there were some set backs…

…her oxygen line was connected to a water box for hydration, to avoid her getting a nose bleed from her nose drying out from the air flow…but, somehow when the nurse was adjusting the lines…water entered into the air tube and shot into her nose and she went limp.  I grabbed the tube with gurgling water out of her nose.  Later, they called some other professionals and said she had a vasovagal reflex (why she went limp).

“Vasovagal syncope (vay-zoh-VAY-gul SING-kuh-pee) occurs when you faint because your body overreacts to certain triggers, such as the sight of blood or extreme emotional distress. It may also be called neurocardiogenic syncope.

The vasovagal syncope trigger causes your heart rate and blood pressure to drop suddenly. That leads to reduced blood flow to your brain, causing you to briefly lose consciousness.

Vasovagal syncope is usually harmless and requires no treatment. But it’s possible you may injure yourself during a vasovagal syncope episode. Your doctor may recommend tests to rule out more serious causes of fainting, such as heart disorders.”

http://www.mayoclinic.org/diseases-conditions/vasovagal-syncope/home/ovc-20184773

Later, I tried to wake her, and her heart went into tachycardia.

“Tachycardia is a common type of heart rhythm disorder (arrhythmia) in which the heart beats faster than normal while at rest.

It’s normal for your heart rate to rise during exercise or as a physiological response to stress, trauma or illness (sinus tachycardia). But in tachycardia (tak-ih-KAHR-dee-uh), the heart beats faster than normal in the upper or lower chambers of the heart or both while at rest.”

http://www.mayoclinic.org/diseases-conditions/tachycardia/home/ovc-20253857

They did an ECG and all seemed okay, but with the extra fluid, I’m guessing some entered her lungs and made recovery a bit longer…

…and, then, the nurses kept trying wean her off the oxygen according to their own discharge schedule, not according to Naomi’s schedule of recovery…and I tried to fight for her to be seen by a respirologist…which finally happened, but, with no solutions…I noticed her oxygen saturations would dip lower in the evening…but, they kept trying to take her off oxygen for periods of time, to see if she could withstand it…and one night…as I was watching Naomi’s oxygen saturations decline on the monitor…until 68!!!…finally, FINALLY, the assigned night nurse came running into the room wearing a yellow isolation gown (clearly, pulled away from another situation, finally realizing the urgency of Naomi’s situation) …and she berated me, asking, have you been up watching the monitor? and then proceeded to say “you are NOT a medical professional!”  The next day, I asked for the nurse practitioner to review the O2 sats history the next day…she looked in detail and found her O2 sats had dropped to 68.  Another nurse, happened to mention that there is a long-term repository for those electronic records.  Later, I heard a similar story re: the same unkind nurse at BCCH from another fellow DS parent.  Life gets so busy, but I do need to submit a letter of complaint regarding this nurse.  Extremely unprofessional and unsafe nursing practices.  I worried about injury to Naomi’s brain, due to insufficient oxygen in her blood.  Pauvre Naomi, after all she had gone through with heart surgery, and now this!  We met some real gems, but we did encounter a rotten apple.  Nevertheless, Naomi survived!  And, we can thank God for his deliverance.

Psalm 23:5 (New King James Version)

You prepare a table before me in the presence of my enemies;
You anoint my head with oil;
My cup runs over.

Two other heart centre nurses and the cardiologist tried to reassure me that CF (cystic fibrosis) patients survive with oxygen sats in the 70s!!!  But, my thinking is that these CF patients had not just gone through major heart surgery and they had a long time for their bodies to adapt (since birth!)

Moms know best, right?  Even Naomi’s pediatrician told me that.  So far, I have diagnosed Naomi using Dr. Google, so many times before a medical professional ever came up with an official diagnosis.  Trust your gut instinct, mama, they are given to us by our Creator God.  I know sometimes, us moms, we can be excessive worriers, but I think it was encouraging for me to realize that I did have good reason to look further into those nagging feelings that just. wouldn’t. go. away.

Psalm 23:5 (New King James Version)

You prepare a table before me in the presence of my enemies;
You anoint my head with oil;
My cup runs over.

A nurse arranged a meeting with the cardiac surgeon.  I wanted Naomi to be on oxygen for longer.  It seemed like they were weaning her too soon.  All she needed was the smallest amount possible.  Without it, her oxygen saturation would drop lower and lower.  Another cardiac surgeon for a sweet baby next door (just a month older who had DS and went through open heart surgery at the same time) told the mom “do not let her O2 sats drop below 95”.  Meanwhile, they had allowed Naomi’s O2 sats to drop to 68!!!  I told the cardiac surgeon, I’m a teacher and I want Naomi to be able to read.  He replied, from what he had read, socio-economic status seemed to be the biggest predictor (I guess meaning, in terms of how high functioning).  I asked him what he meant by that?  (I knew, but wanted to hear his answer).  He said I have to go, but I’ll come back.  He never did.  A bit of a harsh, likely true, but not kind comment…as I might have a lot of education, but I certainly do not belong to the upper echelon of society (i.e. the rich who can afford all kinds of different therapies)!

Psalm 23:5 (New King James Version)

You prepare a table before me in the presence of my enemies;
You anoint my head with oil;
My cup runs over.

Months later, I happened to see the cardiac surgeon in the hallway, during a follow up visit, and I thanked him for all that he had done for Naomi and showed him her beautifully healed scar.  “No not at all”, he said.

It must be a strange thing–to be saving lives every day.  I wonder if it hard to not let it go to your head?  Is it difficult to realize the significance of what you are doing, when you do it everyday?  Or, does concentrating on the significance add to the pressure of doing a job properly?  So, something to avoid thinking about…?

I’m thankful for skillful medical professionals and our Canadian medical system.  It’s not perfect, staff are overworked, and there are wait lists, but they are doing life saving work, and ensuring medical care for all–without financial burdens–and for that I’m very, very thankful.

Wheeled down to get post-operative imaging in a really old buggy.  They don’t make them like they used to!!!  A really sweet ride.  Full of springs to float a baby along with minimal jostling after major surgery.  Someone had a smart idea!

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During our stay for a bit over a week, we had some visits from family members, including some really, really good big sisters!!!  Big sister #1 and Beppe in the corner.

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And, big sister #2.

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O2 sats looking better so will be home soon.  Naomi’s lips, face and hands are starting to gain a rosy colour.

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Home, sweet, home!!!  Could not even describe the amazing feeling of being home!!!  It felt like breaking out of prison.  It was so amazing to see the sunshine again on the drive home, and people just going about their everyday life.

And, our bedroom at home was beautifully cooled down with a new installed air conditioner by Naomi’s paternal grandparents, Pake and Beppe.  Later, our neighbour mentioned that we were not allowed to install air conditioners on the outside of our townhouse (strata rules), but I let him know about Naomi’s open heart surgery…and we never got a letter…thankfully!  It was a hot summer!

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Such a good, sweet baby!

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Life after surgery, a family post-operative visit to the heart centre, with iPad minis, gifts from family in Ontario to keep the big sisters busy during medical visits.  Dr. Sherwin was a wonderful cardiologist.  Skillful and incredible bedside manner.  She took such an interest in Naomi.  We will miss her now that she has moved back to the USA.

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And, later that day, we went to the Ronald McDonald House to a visit with Naomi’s first buddy…a fellow little sweet baby girl named Bonita from Saskatchewan who also has an extra chromosome…I met her lovely mom during her daughter’s heart surgery, just outside of the PICU, right after Naomi’s heart surgery…we ended up having rooms on 3M side by side…fellow believers…was encouraged by this mom’s joyful heart and hearing her sweet singing to her baby next door…God had all the details figured out…glad we could visit and stay connected through Facebook land 🙂

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Psalm 23:5 (New King James Version)

You prepare a table before me in the presence of my enemies;
You anoint my head with oil;
My cup runs over.

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Sweet girl.

hiatus

Well, here I am…close to two years after we were about to experience the most stressful time of our lives, ready to publish another blog post.

When I read my last blog post, some emotions started to rise up, as I remembered all the good messages God sent my way in the time leading up to heart surgery.  When I look back at photos from that hospital stay, I cannot stop the tears from flowing.

I have always been terrible at keeping a regular diary or journal…I JUST can’t do it…instead, growing up, I had a drawer in my desk where I’d toss inspiring thoughts hastily scribbled on scraps of paper…with the hope someday I’d write them…in another place.  Now, on the rare occasion, I put my snippets on files in my computer…here are some snippets that I saved in a file on Jan. 15, 2015, with some edits too:

********************************************************************

I’ve wanted to write this for a very long time.  After Naomi’s surgery, I felt a burning need to process, but never got around to it.  Maybe finding something else to do.  Maybe avoiding remembering the trauma.  Finally, at the beginning of a new year, taking some time to remember.

Today, the public health nurse (she really is so kind, and this is her job), but she decided to slip in “ye old” post-partum depression questionnaire.  She used this:  http://www.fresno.ucsf.edu/pediatrics/downloads/edinburghscale.pdf  I complied and took the test for the second time since Naomi was born.  Today, the score was like 2 or 3, not a problem.  The last time she gave me the test was back in May–just after Noami’s diagnosis.  The nurse let me know the previous score.  It was a lot higher, back then.  (According to the test, “Mothers who score above 13 are likely to be suffering from a depressive illness of varying severity”).  At the time, I did not like the test, feeling that depression is very different from sadness/grief.  There was a reason for my sadness/grief–we had just found out Naomi has Down syndrome.  Back then, my head felt like it had been replaced by a rock.  Couldn’t sleep, yet so tired.  Often in tears.  In the early days, a friend told me about this song, and I played it on repeat, over and over and over!  Listened to it and cried to it too!

“Overcomer” by Mandisa

http://www.youtube.com/watch?v=b8VoUYtx0kw&feature=kp

Staring at a stop sign

Watching people drive by
T Mac on the radio
Got so much on your mind
Nothing’s really going right
Looking for a ray of hope

Whatever it is you may be going through
I know He’s not gonna let it get the best of you

[Chorus:]
You’re an overcomer
Stay in the fight ‘til the final round
You’re not going under
‘Cause God is holding you right now
You might be down for a moment
Feeling like it’s hopeless
That’s when He reminds You
That you’re an overcomer
You’re an overcomer

Everybody’s been down
Hit the bottom, hit the ground
Ooh, you’re not alone
Just take a breath, don’t forget
Hang on to His promises
He wants You to know

[Chorus]

The same Man, the Great I am
The one who overcame death
He’s living inside of You
So just hold tight, fix your eyes
On the one who holds your life
There’s nothing He can’t do
He’s telling you

(Take a breath, don’t forget
Hang on to His promises)

[Chorus]

You’re an overcomer
You’re an overcomer
You’re an overcomer

So don’t quit, don’t give in, you’re an overcomer
Don’t quit, don’t give in, you’re an overcomer
Don’t quit, don’t give in, you’re an overcomer
You’re an overcomer

But, wow, things have changed.  Today, I couldn’t even look at the options I selected back then on that post-partum depression questionnaire–almost a physical reaction–don’t want to go there back to that sad time.  (It now makes sense to me that soldiers don’t like to talk about war!  Even if there was a victory, it came with much pain.)  It’s so good to process emotions, but looking back can bring up painful memories.  Back then…if I got enough sleep, I could keep things together, a bit better.  If not, it was so easy to dissolve into tears.  Sleep was very important.  (Now, I mostly cry watching Little House on the Prairie with the family!  There are challenges, but overall, life is good.  It is a gift.)

When I was worrying if Naomi had Down syndrome in the early days, my mind started to spin with lots of questions…all kinds of crazy questions…

*what will happen to her when we, as her parents, pass on?  will she live on her own?  or in a home?  (*shudder*) or will her sisters care for her?

*what will people think of us?  will people stare at us when we go out?  (what a dumb thought, I know!)

*what medical issues would she have associated with T21?  (all of them, some of them, high or low functioning?)

*what do we do when she gets her period?  (crazy mind spinning!!!)

*and on, and on, I can’t even remember…

I’m glad I found good first hand perspectives through online blogs and through this book: Babies With Down Syndrome, by Susan J. Skallerup

http://www.amazon.ca/Babies-Down-Syndrome-3rd-Ed/dp/1890627550

It was good to have resources to outline potential medical concerns, but the best part was reading encouraging accounts from parents of children who have Down syndrome.  They gave me reassurance in realizing pretty much all parents of children with Down syndrome had an initial shock/grief stage and then move on to acceptance, and a joyful new perspective on life, and counted their little one as a blessing.

The road is not always easy, but it is good.

John 16:33

33 These things I have spoken to you, that in Me you may have peace. In the world you will[a] have tribulation; but be of good cheer, I have overcome the world.”

And I don’t need to worry, things will be okay.  Life is not about success.  The greatest is LOVE!

I Corinthians 13:8-13 …

Love never fails. But where there are prophecies, they will cease; where there are tongues, they will be stilled; where there is knowledge, it will pass away. For we know in part and we prophesy in part,10 but when completeness comes, what is in part disappears. 11 When I was a child, I talked like a child, I thought like a child, I reasoned like a child. When I became a man, I put the ways of childhood behind me. 12 For now we see only a reflection as in a mirror; then we shall see face to face. Now I know in part; then I shall know fully, even as I am fully known.

13 And now these three remain: faith, hope and love. But the greatest of these is love.

And, God will be with me.  This song was also a great encouragement to me.

By Your Side – Tenth Avenue North

http://www.youtube.com/watch?v=J95rAr0gOFU

Why are you striving these days
Why are you trying to earn grace
Why are you crying
Let me lift up your face
Just don’t turn away

Why are you looking for love
Why are you still searching
As if I’m not enough
To where will you go child
Tell me where will you run
To where will you run

‘Cause I’ll be by your side wherever you fall
In the dead of night whenever you call
And please don’t fight these hands that are holding you
My hands are holding you

Look at these hands at my side
They swallowed the grave on that night
When I drank the world’s sin
So I could carry you in
And give you life 
I want to give you life

And I’ll be by your side wherever you fall
In the dead of night whenever you call
And please don’t fight these hands that are holding you
My hands are holding you

Here at my side wherever you fall
In the dead of night whenever you call
And please don’t fight these hands that are holding you
My hands are holding you

‘Cause I, I love you
I want you to know
That I, yeah I’ll love you
I’ll never let you go, no, no

And I’ll be by your side wherever you fall
In the dead of night whenever you call
And please don’t fight these hands that are holding you
My hands are holding you

Here at my side wherever you fall
In the dead of night whenever you call
And please don’t fight these hands that are holding you
My hands are holding you 
Here at my side, my hands are holding you
Ohhh…

I believe we are all broken, not just people with disabilities.  I’m starting to understand.  I think it is often people with disabilities who can see God and worship Him in the most pure way.  Last Sunday, I met a young man at church with developmental disabilities.  He was so joyful to know God.  What an inspiration.  Reminds me of this story written by one of my heroes: Corrie ten Boom.  (She and her father and sister hid Jewish people during WWII in the Netherlands.  Her father died in prison and her sister in a concentration camp.  Corrie survived and continued to serve the Lord, presenting His good news of salvation, often in prisons around the world).

“God wants to conquer our largest and smallest difficulties through His love.  Think of the problems in your life at this moment.  Are there problems that you cannot conquer with human love?  Do it from now on with God’s love, God’s “agape”, which never falls short.  “Happy is the man who can draw his love from the heart of his Savior,” Count Zinzendorf once said.

A pastor once spoke of God’s conquering love in Jesus Christ.  A mentally handicapped boy, Toontje, who went to church faithfully but could never understand the sermons, listened this time with great happiness.  The pastor forgot the rest of the congregation and spoke only to Toontje, whose face began to beam more and more.  He understood something of the ocean of God’s love.  The next morning the pastor planned to visit Toontje, but he heard that the boy had died in his sleep.  There was an expression of heavenly joy on the face of the dead boy.  The pastor said: “I believe that Toontje’s heart was broken because he tried to grasp too much of God’s love. “  God, who is so great, loves to give great gifts; but oh, we people have such small hearts.  But the Holy Spirit continually makes our hearts greater and stronger, until we one day see Jesus face-to-face.

When we are on the beach we only see a small part of the ocean.  However, we know that there is much more beyond the horizon.  We only see a small part of God’s great love, a few jewels of His great riches, but we know that there is much more beyond the horizon.  The best is yet to come, when we see Jesus face-to-face.

“Thank You, Lord Jesus, that You poured out God’s love in our hearts through the Holy Spirit.  Thank You, Father, that Your love conquers today’s problems.  Hallelujah.  Amen.””

(p. 21 Messages of God’s Abundance, by Corrie ten Boom)

And, someday, we all have the opportunity for a new body.  No more sorrow or pain.  I thought of that for Naomi.  Maybe her body is a bit more “broken” than most right now, but we will all die someday.  I believe Jesus died for the sins of the world, and He freely gives the gift of eternal life to all who will believe in Him (John 3:16).

1 Corinthians 15:35-58

THE RESURRECTION BODY

35 But someone will ask, “How are the dead raised? With what kind of body will they come?” 36 How foolish! What you sow does not come to life unless it dies. 37 When you sow, you do not plant the body that will be, but just a seed, perhaps of wheat or of something else. 38 But God gives it a body as he has determined, and to each kind of seed he gives its own body. 39 Not all flesh is the same: People have one kind of flesh, animals have another, birds another and fish another. 40 There are also heavenly bodies and there are earthly bodies; but the splendor of the heavenly bodies is one kind, and the splendor of the earthly bodies is another. 41 The sun has one kind of splendor, the moon another and the stars another; and star differs from star in splendor.

42 So will it be with the resurrection of the dead. The body that is sown is perishable, it is raised imperishable; 43 it is sown in dishonor, it is raised in glory; it is sown in weakness, it is raised in power;44 it is sown a natural body, it is raised a spiritual body.

If there is a natural body, there is also a spiritual body. 45 So it is written: “The first man Adam became a living being”[a]; the last Adam, a life-giving spirit. 46 The spiritual did not come first, but the natural, and after that the spiritual. 47 The first man was of the dust of the earth; the second man is of heaven.48 As was the earthly man, so are those who are of the earth; and as is the heavenly man, so also are those who are of heaven. 49 And just as we have borne the image of the earthly man, so shall we[b]bear the image of the heavenly man.

50 I declare to you, brothers and sisters, that flesh and blood cannot inherit the kingdom of God, nor does the perishable inherit the imperishable. 51 Listen, I tell you a mystery: We will not all sleep, but we will all be changed— 52 in a flash, in the twinkling of an eye, at the last trumpet. For the trumpet will sound, the dead will be raised imperishable, and we will be changed. 53 For the perishable must clothe itself with the imperishable, and the mortal with immortality. 54 When the perishable has been clothed with the imperishable, and the mortal with immortality, then the saying that is written will come true: “Death has been swallowed up in victory.”[c]

55 “Where, O death, is your victory?
    Where, O death, is your sting?”[d]

56 The sting of death is sin, and the power of sin is the law. 57 But thanks be to God! He gives us the victory through our Lord Jesus Christ.

58 Therefore, my dear brothers and sisters, stand firm. Let nothing move you. Always give yourselves fully to the work of the Lord, because you know that your labor in the Lord is not in vain.

Things were pretty scarey at the beginning.  Emotionally, it was like being on a roller coaster.  And yet, God was by our side, during this trial!

“By Your Side” Tenth Avenue North

“”By Your Side”

Why are you striving these days
Why are you trying to earn grace
Why are you crying
Let me lift up your face
Just don’t turn away

Why are you looking for love
Why are you still searching
As if I’m not enough
To where will you go child
Tell me where will you run
To where will you run

‘Cause I’ll be by your side wherever you fall
In the dead of night whenever you call
And please don’t fight these hands that are holding you
My hands are holding you

Look at these hands at my side
They swallowed the grave on that night
When I drank the world’s sin
So I could carry you in
And give you life
I want to give you life

And I’ll be by your side wherever you fall
In the dead of night whenever you call
And please don’t fight these hands that are holding you
My hands are holding you

Here at my side wherever you fall
In the dead of night whenever you call
And please don’t fight these hands that are holding you
My hands are holding you

‘Cause I, I love you
I want you to know
That I, yeah I’ll love you
I’ll never let you go, no, no

And I’ll be by your side wherever you fall
In the dead of night whenever you call
And please don’t fight these hands that are holding you
My hands are holding you

Here at my side wherever you fall
In the dead of night whenever you call
And please don’t fight these hands that are holding you
My hands are holding you
Here at my side, my hands are holding you
Ohhh…”

 

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a story begins

Naomi was born at 38 weeks on April 3rd, 2014.  My water broke the day before, while trying to help my husband install a new toilet.  It seemed we had lots that was left undone from our move a week and a half before—lots of boxes and we hadn’t even packed to go the hospital.  Quickly packed up the girls, and dropped them off at my Mom’s house.  Delivery went well, but after seeing her, we had some initial thoughts that she has Down Syndrome (DS) but didn’t mention them to each other.  My husband and I finally told each other our fears she has DS a few days after she was born.  My husband ran to get the laptop and we looked up physical characteristics of DS and we noticed some things.  Interestingly, the delivery doctor and nurses made no mention…and we brought it up with our family doctor, at a few days old, he just thought she had her own unique look…and then at 1 month, there was no referral, seemed a bit of a “wait and see” approach.  The main concern at the beginning was her jaundice and getting her feeding more—she could go for maybe 9 hours sleeping and we tried everything to try to wake her up—vacuum, bath, kids screaming—and she would still sleep.  Kept having thoughts about DS but didn’t want to really face them either.  Kind of interesting the DS was overlooked by many medical professionals…but, in retrospect, maybe it was good–time to recover from delivery and I’m sure I needed time to process.  
 
Finally decided to drive to Children’s Emergency on May 23 (at 7 weeks) since she was not looking great–pale and bluish around her eyes and under her nose especially when sleeping.  My mom had remarked that she felt cold, maybe something with her heart?  I had decided to look up some things and started to get worried–found out that up to 50% of children with DS have heart defects.  Good thing we went to Children’s–they recognized DS and said her heart was working hard and her oxygen level was de-saturating during feeding.  They referred us to a pediatrician who we met for the first time mid-June and he gave us the genetic results confirming our thoughts that she has Trisomy 21 (genetic cause for DS–3 copies of the 21st chromosome, instead of 2).  By the time we got confirmation, it was hard to hear, but good to finally have some confirmation, we could now start to move forward to get the help she needs.
 
After the first visit to Cardiology at Children’s, they were saying she would have heart surgery at 6 or 7 months…so in October or November…to give time for her to grow more…but all decisions are made as a team.  We had our second visit to Cardiology and the Cardiologist said she would present Naomi’s case.  She called mid-July to let us know surgery would be within the month.  We were kind of shocked and worried, for a bit.  Why so soon?  Were there concerns that they wanted to do it sooner?  Wrote an email wondering why it was going to be earlier, so they called again, said the Cardiologist expressed our concerns to the surgeon, and said it could be on Sept. 3rd or mid-August.  Then, we were realizing it would be best to have this over and done with sooner than later.  Waiting is hard.  We preferred an earlier surgical date, as much as we would not want surgery to happen, but we know it is for the best.  Sooner seemed better than later for a lot of reasons, then we can move on to the next steps.  I will also have more time this summer since I have very little work to do for my jobs in home education.  So, I wrote another email expressing why we actually now hoped to have this done sooner.  Just this past week we got a call that Naomi’s surgery is planned for July 28th.  Her pulmonary hypertension is on the severe end of the scale.  Not sure if surgery will solve this problem completely– Cardiologist expects it won’t–maybe partially–lots of factors involved—sounds like there is medicine she can take to help.  And, there could be other issues, but we don’t know at this point–waiting for referrals to a Respirologist and an Ophthalmologist, both at Children’s.
 
She has already been referred to physical therapy, occupational therapy and speech therapy in our community.  Her muscle tone is quite low which is common, so extra work will be needed.  Sarah asked “Will Naomi grow up to be big and strong?”  I said I hope so.  I explained to Sarah and Jasmin that Naomi will take a bit longer to learn how to walk and talk, so she will need some more help to get there.  Her big sisters give her lots of kisses and hugs every day!  And fight over her too 🙂
 
Naomi’s sometimes not feeding that well right now–I think she was tiring out with the heat wave we had recently (glad the weather has changed for now), compounded by the heart/lung issues.  She’s not gaining as much weight as they would like.  About 13-20 grams/day vs. 30 grams/day.  So, I go into the health unit every week to weigh her and sometimes meet with a public health nurse.  
 
Lots of medical appointments–at least one per week.  This coming week there will be three.
 
In the midst of all of this, definitely feeling God’s presence and love in all of this and that is a great source of comfort.  He is sending Bible verses, people and other things at just the right time.  Incredible support and prayer from family and friends–thank you!!!  
 
And, I’ve been “just happening” to meet other moms who have kids with DS–both who had to go through heart surgery–great encouragement.  One mom is actually a nurse on nurseline…in the early days, I called 811 due to Naomi’s breathing rate…and she “just happened” to be the perfect person to talk to…she told me about her youngest son who has DS, went through heart surgery and is now ready to enter Kindergarten.  She has been keeping in contact with me by email and we will likely meet up this summer.
 
We have definitely had very hard days—this has been very difficult—lots of tears–my husband said he doesn’t think he has cried this much in his life—I don’t think I have either!  But, in the midst of all of this, we have had some very beautiful moments too.  “Just happening”s–divinely orchestrated appointments–thankful for them.   
 
Thankful also for prayer, phone calls, messages, and visits with family and friends.  Thankful for friends and family who have supported us in different ways.  Thankful for those watching Naomi’s older sisters so we could attend appointments and so I could get my end of year work done!  Thankful for family members who have hatched a plan to keep Naomi’s older sisters occupied when they do have to come along to appointments (iPad minis)!  Thankful my husband’s cousin/boss has given him time off from work for appointments!  Thankful I have work as a teacher and the summer off!  Thankful for family members who escaped to Manning Park with us at the end of June—we needed to get away!  Thankful for family members who can share such positive words based on their work with kids with DS!  Thankful for books about DS from family members!  Thankful for family in Vancouver who are giving us a place to sleep during surgery!  Thankful for family coming to visit and help us out (watching Naomi’s big sisters while we stay at the hospital)!  Thankful for all who have prayed for Naomi and our family!  Please feel free to continue to pray.  Thankful for the elders from Coquitlam Alliance Church, where we had been regularly attending for the last 5 years before our move,who came to pray for Naomi on Friday.  It was a very good time and my husband and I felt very blessed from that experience–praying for God’s will to be done—He will answer.  Thankful for prayer, care and concern from the people at Silver Valley Church as well, where we have attended a bit lately since our move.  Maybe God has chosen to heal her heart through a miracle, or maybe her heart will be healed through surgery.  We trust in his best plans and will just pray for His will to be done. 
 
Thankful that Naomi has been smiling, and started to laugh recently–cute 🙂  
During this time, in case you are interested in reading more, here are some things that have been very meaningful:
 
Bible verses:  
 
  • This one was at the Vacation Bible School that Naomi’s older sisters attended recently at the High Way Church in Maple Ridge.  “Just happened” to meet a mom there who showed the chest scar from her 2 year old’s heart surgery.  Her daughter also has Down Syndrome.  Great to talk to a mom who has “been there”.  She offered tons of support.
1 Samuel 16:7 (second part)
“For the Lord does not see as man sees; for man looks at the outward appearance, but the Lord looks at the heart.”
 
  • And, these encouraging words Jesus said were on my mind a lot.  I “just happened” to read it in the Today devotional that is emailed daily.  Heard it in a sermon we heard recently at Coquitlam Alliance Church and in a song at Silver Valley Community Church this past Sunday as well.
John 16:33
“In this world you will have trouble. But take heart! I have overcome the world.”

Today Daily Devotional: Trouble In God’s Story
Sermon from Coquitlam Alliance Church: 
Question #3: Why does bad stuff happen to good people? (scroll to 6:59 minutes)
  • And, this verse from our wedding has been meaningful during this time.
Romans 8:28
And we know that all things work together for good to those who love God, to those who are the called according to His purpose.”
 
Video:
 
Here is an inspiring story that we watched the other day from ESPN “E:60 – Perfect”.  I had “just happened” to watch this a while back on Facebook, before all of this, and Matt let me know it was on television just a few days ago, so we watched it together.  About a Dad coming to accept and love his daughter with DS—very inspiring—grab your Kleenexes!

Story:
 
Here’s a story that I’ve been finding a lot online and in books about Down Syndrome.  I “just happened” to pick up an unrelated book on my shelf the other day, and found this story again.  The author has a son with Down Syndrome. 
 
Welcome to Holland
c1987 by Emily Perl Kingsley. All rights reserved.
“I am often asked to describe the experience of raising a child with a disability – to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It’s like this……
When you’re going to have a baby, it’s like planning a fabulous vacation trip – to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, “Welcome to Holland.”
“Holland?!?” you say. “What do you mean Holland?? I signed up for Italy! I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.”
But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay.
The important thing is that they haven’t taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It’s just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It’s just a different place. It’s slower-paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around…. and you begin to notice that Holland has windmills….and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy… and they’re all bragging about what a wonderful time they had there. And for the rest of your life, you will say “Yes, that’s where I was supposed to go. That’s what I had planned.”
And the pain of that will never, ever, ever, ever go away… because the loss of that dream is a very very significant loss.
But… if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things … about Holland.”
 
Blogs:

I “just happened” to find this one when Naomi was only a few days old.  They also received a diagnosis after birth.  This boy and his family are doing amazingly well.  Very inspiring.
Song:
We sang this worship song at our wedding.  “Blessed Be Your Name” based on Job 1:21.  Meaningful at this time.