Here she is again! Phase two- post up from her arterial switch, OFF ECMO, weaning drips like it’s her job. During her four week stay at Penn State Hershey Children’s Hospital I tried to visit as much a possible. I wasn’t sure I’d even have the right words to write Part One of this story (if you missed that- click HERE!) so I asked my sister and her husband to write a bit about their story for the second part of this series. Obviously, their experience is extremely unique and something only they can truly describe.

So today I give you more of the story, in the words of my first ever guest bloggers- Amanda + Jason Doebler (aka Mom + Dad).

13 days…

That’s how long we had to wait in order to finally hold our beautiful baby girl.

We don’t have any of those traditional hospital baby pictures. Those pictures with the mother in her hospital gown holding her brand new baby and a beaming father in awe. “Mother and baby are doing great!” is usually the caption. That was not our experience, not even close.

The moment our daughter came into the world was the same overwhelming joyful moment that all parents get to experience. However, the fear and uncertainty that ensued quickly changed the narrative over the next hours, days, and weeks.

Our family had so many wonderful and unforgettable moments in those first few weeks from the birth of our miracle to her getting through two successful open-heart surgeries in just less than 24 hours. The joy of first laying our eyes on this beautiful girl could only be rivaled by the pure emotion and relief that was experienced when Laney was brought back up from the O.R. after her 8-hour arterial switch operation. We were still in disbelief and stood in the hallway in silence, until the heart surgeon following closely behind his “Laney-girl,” adorned with a huge smile said, “she did awesome!”

Laney’s upcoming days were met with wonderful progress, along with some expected and unexpected setbacks. Her main goals were healing and getting stronger to work toward getting extubated. Her setbacks included a seizure and a potentially dangerous blood clot in the brain (paired with a bleed in another part of her brain just to make things even more complicated). As the amazing Doctors, PAs, and Nurses flawlessly altered the course of her recovery to handle what seemed to be daily hurdles, Laney continued to fight and take on every challenge that was thrown at her. Despite all of these setbacks, she continued to heal, get stronger, and show more signs that she was preparing to breathe on her own.

Finally, June 3rd came. It was extubating day. This was huge.

Laney was finally going to get the breathing tube out. Now that the tube is out, its time. For the first time, we could finally see her little face, her little mouth, and hear her poor hoarse cry. With all the IVs, wires, and monitors it still was a 3-person job to get her out of her PICU crib, but it was time for her be where she belonged- in our arms. Although, the road ahead was still daunting with more setbacks to be met and more milestones to be achieved. In this moment, for the first time we could hold our beautiful daughter in our arms and it truly felt like from this moment forward, everything was going to be all right.