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| Photo by Lentille Photography |
1.5.17
I'm rolling out of bed at 4 a.m. for a date with my breast pump. I'm hoping to make it quick so I can sneak in a couple more hours of sleep before rushing back to Texas Children's Hospital to see my three-week-old son. Sleeping at the hospital again wasn't an option. There's no way anyone can properly recover from childbirth in the small upright chairs they allow at the bedside. No such thing as privacy and sofa beds in the Cardiovascular-ICU. The five minute drive makes gives me so much anxiety I want to pull my hair out.
My husband reacts to my breaking the silence with a "shh shh shhhhhh" in his sleep. Adorable yet sad. That's because we've spent the last few days endlessly "sushing" our baby while he screams his way through sedation withdrawals. They don't tell you that part. They don't explain how plain pissed off and miserable your child will be after he starts to open his eyes and move around. Meanwhile, the doctors try their best to figure out the perfect balance of medications to comfort him, yet not over do it. Maybe today will be a better day. It will certainly will never be as bad as last Thursday, undeniably the worst day of my entire life.
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| Augie showing off his muscles, photo by Lentille Photography |
It had been less than 10 hours since Augie's first heart surgery. They placed what's called a BT shunt to allow for proper pulmonary blood flow. In essence installing a tube the width of angel hair pasta to temporarily stop him from going blue. It doesn't even begin to correct his anatomy...but it buys time.
After a nail biting day of updates every hour-and-a-half for a seven hour period, all had gone according to plan. He had survived his first night post-op but was still pretty sedated. I listened to the TV and pumped at his bedside (story of my life). Meanwhile, Walter was just getting back from a quick trip to the hospital's Starbucks. In all, a pretty uneventful day up to that point.
Then, as the hospital staff would describe it, our son went down fast. The nurse brought in the respiratory therapist and the attending doctor. After a few minutes of pumping him with air, the doctor urged, --"push the code button...NOW." Walter and I were pushed into a tiny corner of the room while the rest of the floor staff ran in. All I could see was the attending's profile as she demanded, --"more epinephrine, prep an OR!!!"
The surgeon was rushed in, having just finished another operation down the hall. One of his assistants shakily passed Walter the surgery release contract we had signed a day earlier in a calmer conference room setting. Then the attending brought me in closer before they wheeled our baby away. --"Talk to him, mom. Tell him to hang in there." At that point I had been sobbing so hard, I'm not sure my words were intelligible much less inspirational. But I tried my best to tell him to hold on and keep fighting. Walter and I were left clenching each other, crying, and eventually looking around Augie's empty hospital room that now resembled a war zone. Syringes, gloves, vials thrown all over the floor. The whole event lasted less than 30 minutes before he was taken back for a repeat of the surgery he had had the day prior.
We could never admit it to each other, but we were both thinking it. Our son almost died in front of our eyes. A few days later, the attending confirmed those thoughts by casually saying, --"Hey, at least we didn't have complete cardiac arrest." She could get away with it...she did save his life. They couldn't tell us why his shunt failed. Either it clotted or kinked off...all they know is it stopped working.
I know God was in the room that day. I remember trying to block every fear I had with silent prayer. Thank goodness for the nurses, the attending doctor, the surgeon, and all others involved. Though we would've preferred to avoid the event all together, we're glad it happened at the moment it did. Our son lived. To spare myself anymore post traumatic stress on the topic...I'll stop there.
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| Photo by Lentille Photography |
Fast forward. Augie's little shunted heart has been supplying blood to his lungs and pumping enough oxygenated blood to his body for more than two weeks now. Praise the Lord. He's been doing so well, in fact, we got moved down to a "step down" unit almost a week ago. He's been eating like a champ and sleeping very peacefully with mom and dad at his bedside 24/7. It looks like we will even get released to our local apartment soon!
Now before anyone gets too excited...this doesn't mean we are going home to the Panhandle just yet. We've accepted the reality that our journey isn't over. We know and understand that the operation(s) he's had so far are only palliative or "bridges" to allow him to gain some weight for the next. He's currently surviving on oxygen saturations in the 80's. Those of us with normal hearts are at 95 to 100 percent saturation. That's why we must stay close to his cardiologists and heart surgeon for the time being.
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| Photo by Lentille Photography |
While a part of me longs for our little man's heart to just be fixed already...that's simply not the way it works. I have to be grateful for his existence and this process. Years ago he wouldn't have made it this far. So we will take it step by step. Next up? Another surgery. But to ensure a more successful outcome, he must gain weight! And that is no easy task considering the many factors that prevented him from putting on any weight at the hospital. Soooo here are our requests...pray Walter and I will continue to be graced with patience. We are working so hard at this weight gain stuff. And, of course, pray Augie continues to do his part. As always...thank you and God bless!
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