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 (they asked me what O2 sats I would like to see her at on discharge…I mentioned a value in the 90s…and they laughed…I think they thought she was not able to do that…when in reality, she just needed MORE TIME to recover!!!)…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.

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