Meeting the Surgeons

Yesterday was a big day for our family- Sawyer and I got to meet with the pediatric cardiology surgical team that will be operating on him Thursday.


 I already knew all about them though, God works in mysterious ways sometimes.


A couple of years ago, an old high school classmate posted on facebook one morning about her baby cousin, Kally, having heart surgery and asked for prayers. Of course, like anyone who hears of a baby having open heart surgery, my heart was immediately pulled to pray, so I did. For some reason, this little girl lingered around my mind all day. I found myself checking and re-checking facebook for any updates on her.


So often, especially with facebook, we see these stories of families in crisis, coveting our prayers. We say our dutiful prayer, and then we go on about our day. I'm ashamed to admit, but I'm definitely guilty of this, but this time, it was different.


A short time later, this same family posted a video about the surgeon who performed on Kally- Dr. Hisashi Nikaido was receiving the 2011 Miracle Achievement award and it featured this sweet angel's story. I remember watching and re-watching the video crying my eyes out.



And then, as time went on, I forgot about it.........



The night before Sawyer was admitted for RSV, Lyndsey, my old classmate sent me a message asking about which surgeon Sawyer had been assigned. She reminded me of her story, and it all came flooding back to memory. Upon request, she sent me the link to the video of the surgical team. I thought, "There's no way we'll get that team"  I didn't know how it all worked, but I thought there's just no way.



Last week when Dr. Kimberling, Sawyer's cardiologist (by the way, a cardiologist is not a surgeon. I did not know that before my heart baby.......anyways.......back to the story) said that Sawyer was big enough, so he was going to present him to the surgery board to get scheduled for surgery. He said that they would call me so that I could come and meet with them to discuss everything. When I called I asked the name of the surgeon and when she told me, I was amazed.



I'm not necessarily amazed with the cardiology team- I mean, I am- but that's not what gets me. As much as I respect Dr. Nikaidoh, Dr. Alteyeb, Dr. Barth, and Perfusionist Jorge Molina, I was amazed at the intricate details that God takes an interest in.



Its amazing to me that he SENT me the comfort of already having confidence in this team's ability before my heart baby was even conceived.

He didn't have to do that. But he did.

Its amazing to me the way he works.

Its amazing that the God that I serve sits OUTSIDE of time.

He's Big. He's so big, we can't even fathom it.

He's holy. He's not holy as in an adjective. He IS holiness.

He's not powerful. He's not merely 'full of power'. He IS power.

He is the source of life itself.

And yet, he cares enough about me that he would start preparing me for this long before I even knew it.

 My confidence about Thursday does not lie in the hands of the cardiology team, though its no secret that I am incredibly THANKFUL for them.

 My confidence lies in the hands of the God that formed my son's heart. His design is perfect- even though we may not see it that way.

For you formed my inward parts

You covered me in my mother's womb

I will praise you, for I am fearfully and wonderfully made

Marvelous are your works

And that my soul knows very well

My frame was not hidden from you

When I was made in secret

And skillfully wrought in the lowest parts of the earth

Your eyes saw my substance, being yet unformed

And in your book, they were all written

The days fashioned for me

When as yet, there were none of them

Psalm 139: 13-16

Here is a picture of some of the surgeons notes that Dr. Alteyeb sent home with me so that I could describe to Heath what I learned about the surgery. At the time with him explaining it, this drawing made perfect sense. But now, I have no idea, really.......

And here is the outfit Sawyer wore yesterday to go meet the team. Its a 6 month outfit! (He's not quite 3 months) CHUNKY MONKEY! Love him so!

And here is the video of Sawyer's team. You won't regret watching it.

And this is the picture that a friend sent me a few weeks ago. I love it. Thanks Becky!

Sawyer's Surgery: One Week from Tonight

Right now, it is about 9:30pm on Thursday. One week from tonight, Sawyer will have already been through his operation, and he will be recovering in the PICU. Everyone that came up to the hospital to show support will be home. His big brothers will be sleeping at a friend's house, and I will be in the room with him, staring at all of the machines and listening to the beeps for consistency in their tones. 

This will all take place on his 3 month birthday. My sweet little man is going to go through something that most adults will never have to face- Open Heart Surgery. 

Just 12 weeks ago, I was sitting on this very couch, watching Sawyer roll around inside me, and wondering to myself what he looked like, what his cry would sound like, how his brothers would handle his arrival, and honestly, how the scheduled c-section would go. Surgery always makes me nervous. Always. 

I didn't sleep for one second that night. Not one! I tried. I turned off the t.v., then turned it back on. I closed the laptop, and then reopened it. I couldnt turn my mind off, until finally 4am came, and it was time to start getting ready to leave for the hospital.  This is me and Sawyer the night before his birthday.

The next morning we went in and everything went as planned! Sawyer Lee Edward Guinn was born at 7:25 am and weighed 8 lbs 1 ounce. He also had an unexpected full head of dark hair- so unlike his two bald blonde brothers. 

It wasnt until that afternoon that the doctor came in to tell us that they had heard a loud murmur in his heart and were sending off the ekg to be looked at by cardiologist in Tulsa. 

No big deal, I thought. I have friends that have heart murmurs.

Later that evening I had family visiting when the doctor and nurse came in and asked us to clear the room. 

I really don't fully remember in detail what was said next. Its all bits and pieces, I remember her reassuring me that it could be repaired. I just remember hearing the terms 'blue baby syndrome', 'tet-spell', 'passing out' 'dusky appearance' and several times Shawn White was mentioned. Hes an Olympic Gold Snowboarder and was born with the same condition- Tetralogy of Fallot.

Basically, he has 4 separate defects of the heart affecting his valves. When these defects are seen together, this is the term used to describe the condition. TOF is usually seen in children with Downs Syndrome and also usually seen with a cleft lip, however, Sawyer has neither of those. The certain obstruction in the valve leading to his lungs is the most worrisome, because his blood oxygen levels are lower than that of a normal persons, and any extra added stress on the valve can result in him having what they call a "tet-spell" where he passes out.

So letting him "cry it out" is NOT an option. 


So, we went home and we just expected to wait until he was between 4-6 months old to do the surgery, but when he was 3 weeks old, he caught RSV, which lead to a 15 day stay in the PICU. Any type of respiratory virus has to be monitored with him because of his blood oxygen levels. Normal people have blood-ox levels at 100%. The lowest Sawyer got in those days was in the 40's- but he didnt stay there for long. For a couple of days he was hovering around 65%, but the average for him during his stay was between 70-75. Here is a picture of Sawyer on his one month birthday, when he was in the PICU.

Here are some more PICU pictures

He loved the way the nurses burrito wrapped him

Here is the first outfit he got to wear, about a week after he was admitted. Our nurse that night helped me re-wire him so he could wear his jammies!

Smiling while he was sleeping on mama!

So, here we go again! I am so thankful that his condition is one that can be repaired, but my eyes are now forever opened to anyone who has had a child who faces challenges and has a special precaution or need. 

I'm also permanently aware of  the difference between just telling someone that you are praying for them and serving them with whatever way you can think of.

I now know that people who are in crisis can tell if you're telling them you'll help to appease yourself or if you really mean it.

Sawyer's heart has forever changed my life, and it has me always asking myself where MY heart is. 

I want my heart to be a reflection of Jesus. I want it to be focused on God, others, our family, and our home. I'm starting this blog to celebrate those four things. 

Thanks for joining me in celebration, and thanks for listening to our story.