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.