A Long, Long Week

This last week we realized, more than ever, that life can change in a split second. As we drove to Phoenix Children's Emergency Room on Monday night, I was terrified. Two of my dear friends, whom I've met on this CHD journey, also took their baby girls to the ER. Their hospital visits, unbeknownst to them, turned out to be the last few moments they'd see and hold their sweet child. I played that thought over and over in my mind during that 30 minute drive to the hospital. I sat in the backseat with Zoe and stared at her face, hoping and praying that this was not our same fate. I tried to memorize her face, searing her angelic face into my brain.

At the ER, after a missed opportunity for a blood draw (a hard lesson learned), we took Zoe home to monitor her. The next morning, her fever was back and off to the cardiologist we went. You know the rest of the story...

Tuesday morning, we made a temporary home at the Pediatric Intensive Care Unit at PCH. Even though Zoe is only 3.5 months old, I could see in her eyes that she was scared and wanted to be anywhere but in another hospital crib.

She inherited a nice, big room with a great window view of the train in the courtyard. I noticed, while at CHOP, that Zoe loves gazing out the window. I can only imagine how she dreams of being out of doors.


The three and a half day PICU stay seemed to drag on and on. An echo, multiple chest xrays, countless blood draws, an ultrasound and several phone calls to CHOP consumed our sleepless days and nights. Zoe began eating better on Wednesday afternoon and her fever broke. We were told that Zoe's urine culture grew bacteria and were relieved to have an answer and a treatment plan. The urinary tract infection was, as we were told by the cardiologist, our best case scenario.

After another day of monitoring and testing, Zoe began to feel better and smile once again. On Friday, we heard the "D" word (discharge) several times, but refused to get our hopes up. It wasn't until I signed the discharge papers that I felt we were home free. One by one, the tubes and wires disappeared until all that was left was the pulse ox probe.


We began snapping some photos as we prepared to retreat far, far from the hospital.


As you can see from Zoe's facial expression, she thought the photoshoot was a waste of precious time. "Can we just leave already?!"


You can see from the photo above that Zoe's oxygen saturations are still low (mid 70s to low 80s), but once she fights off the infection fully and post-Glenn, her color should improve. Oh, and for those of you that hadn't heard, Dr. Spray will go forward with Zoe's Glenn, as scheduled, assmuming her infection is gone and lungs are clear for bypass.

We packed up our business into the car and got one last photo before driving away. Zoe refused to wave for the photo, so I helped her a little. She was mad we were still taking photos instead of driving home (frankly, so was daddy.)


At home, we were pleasantly surprised that the tornado that seemed to have struck our house before we rushed out had cleared. My mom and grandma surprised us with a pop-in housecleaning. It was such a relief, knowing the disarray when we left on Tuesday morning. Thank you SOOOOO much mom and gma!!!

Yesterday afternoon, while Zoe napped, her sats dropped into the 60s - way too low. We notified her cardiologist who, at 5 p.m. on a Friday holiday weekend, called in an emergent order for oxygen. At 9:30 p.m., the door bell rang and in came an army of tanks. Holy crap!!! Oxygen bar at the Lihn residence...



Zoe experienced some PTSD (no joke) when I inserted the nasal cannula into her nose just before bedtime. At that moment, I became angry that this was our life. The week of rollercoaster emotions had taken its toll on us. We are now five days out from heading to Philly for another surgery, another hospitalization. I expect, no, I demand, some smooth sailing post-Glenn.

Along with a hospitalization comes more medications...


And "toys" as Emmy put it...


I love that our nurse gave us Zoe's stethoscope. I can listen to her heart, lungs and shunt murmur whenever I want. And Emmy can check on Papa and Lambsie's heart too, for peace of mind.


And so...now it is time to kick back and relax and count down the days to Philly.

(For Zoe anyway - mom and dad have lots to do before then!)