Since we last "spoke" I had a baby! A beautiful, sassy, perfect baby!
Sawyer spent 1 week in the NICU with the world's most fabulous nurses. Then she had her first open heart surgery.
We have since been in the CVICU being taken care of by some more seriously fabulous nurses! She is doing well all things considered. This surgery is no small potatoes -- it's a huge deal. Open heart surgery on a 7 day old is pretty serious business and the recovery will be a long process with many ups and downs along the way. Don't ask if she's "on course" or if she's "doing as well as expected". There are no answers for those questions. HLHS is a beast of a heart defect. It presents itself in many different ways and each child and family walks a different path when it comes to treatment and recovery. There's no predicting who will do well and who will struggle. There's no predicting how well Sawyer will do from one day to the next... or even from one hour to the next. We live minute by minute here, and while it's scary and frustrating at times, we also get to celebrate a lot.
Sawyer has been in the hospital almost 2 weeks. Today is day 13 of hospital living. When she grows older, she won't remember any of this, thank goodness. We, however, most definitely will!
We will remember the nurses fondly -- particularly Nurse Phyllis. Nurse Phyllis is a NICU nurse at Riley who allowed Patrick and I to be parents instead of bystanders. It may seem small to the parents of healthy children, but Nurse Phyllis always let us feed our child, let us change her, gave us opportunities to snuggle her. Nurse Phyllis let us love on our daughter and we will be forever grateful for that. Nurse Phyllis also did her fair share of loving. When we were out for lunch one day, we returned to find Sawyer snuggling a little teddy bear, with a sweet little bow on her head. We looked up to find a painting of flowers made with little Sawyer footprints. I take Sawyer's teddy with me everywhere. I held it through her whole surgery. The flower painting will decorate her nursery. Nurse Phyllis gave us memories to cherish.
We will remember the cramped living quarters and forever appreciate our king-sized bed. Making your life fit into a little nook is no easy task, but we make it work. Care for a tour?
Here is our nook. I literally spend all day here. Pat sleeps on that blue "futon" and I sleep on that lovely green recliner then proceed to spend the rest of my day there twiddling my thumbs and watching HGTV.
Here is our storage. Our mini fridge is filled with Pat's Coca-Cola because "You can't get a coke for a square mile" and the closet houses all of our stuff and our snacky snacks because "There are no candy bars here!" (complaints from pat on hospital living day TWO!)
This is a view from the front of the room. We are SO SO SO grateful for private rooms. It just gets a little snug. You can see Sawyer's little hangout on the left side.
We will remember the noise. The constant rhythm of her heart rate over the monitors. (How will I know if her heart rate is good at home?! How will I function without the beep?!). The bing bongs of her oxygen monitor when she is breathing too slow or too fast or there's water in her vent. The quiet hum of all the equipment running around her. The click clack of the nurses typing out their charts. The footsteps of nurses, doctors, and respiratory therapists entering and exiting the room at all hours in their clunky hospital black shoes. Will we ever be able to sleep in silence again? I think now I will need the noise.
But above all, we will remember how brave our little girl was through this whole ordeal. We will remember how her strength left us at a loss for words. We will remember how this tiny, sweet baby was born fighting and how she never gave up... how she gave us the strength we needed to fight. I don't know how much longer we will be "hospital living" but as long as I get to look over and see my girl -- it doesn't matter where we are. We can't wait to get her home, but when it comes down to it, home is wherever she is.