Wow, it's been nearly a month since we last blogged. I guess that's what happens when you get home with your baby and suddenly you're parents -- like, real parents. Between feedings, changings, and playtime... there isn't as much time for blogging, hobbies, or general hygiene ;)
I wrote about how this journey is very much like a roller coaster and that certainly holds true. We were discharged from the hospital September 2nd and have already been back twice... once for an extended stay and a cath lab procedure. It's scary how quickly things can change for these kids. One day Sawyer's O2 saturations were in the 80s... the next day low 70's... then the day after that we were headed to the emergency room for sats in the 60's. We are so very fortunate to live close to our hospital and to be in a hospital that's filled with truly AMAZING doctors and nurses. I know for them it's a job, but I wonder if they know how many people consider them family? Do these nurses realize how we trust them with our most precious gifts when trust is so hard for us? Do these doctors realize that we sing their praises every day... even when we're resting comfortably at home? We sure do hate going back to the hospital, but how wonderful that, when we do, it's like going to see family.
I have to admit I've been staring blankly at the screen for about 5 minutes trying to think of something to write. We've truly just been living life like any other family does. Granted, we don't get out much. We don't take her to the store or even to the park. You just can't be too careful with hypoplast kids between their first two surgeries. Germ free is the way to be. Catching even a small cold can land these kiddos in the hospital (Just ask us!!! She had a cold when we took her to Emergency). So we don't really leave the house, but we still live. We read books and do playtime. We sing, bounce, and snuggle like other families do. It all feels so very normal. It's our normal. Drawing medicine, checking sats, charting her intake and weight gain... it's a special kind of normal. It's easy to look at her and see just a regular baby. We have to constantly remind ourselves (and others) that she is, indeed, fragile. Because, honestly, she is the strongest, toughest person I've ever met.
I suppose the big difference between us and other families is that we're crazy... at least I am. I'd be lying if I said the last two months have been easy. In the back of my mind, at all times, is the thought that something could go terribly wrong any second. I'm constantly asking myself, "Does she look puffy? Has she been peeing as much as she did yesterday? Is her color off? I wonder what her sats are at this very second? She's grunting... is she in distress? Why is she so fussy... is it just gas or is her heart failing? She didn't gain weight, SHE HAS TO GAIN WEIGHT." Then there is the added stress of nobody truly understanding what we've gone through and what we continue to go through. People will judge us or question our decisions because they don't know what it's like to care for a critically ill child. They don't know what it's like to watch your child slowly heal from an open heart surgery knowing they will have to go through it all again in just a few months. They don't know what it's like to be sick with worry before each echo... knowing that something might have changed for the worse. We've already seen strain on some of our relationships because a lack of empathy and understanding... I'm sure this will continue. But on the opposite end, we've been blown away by the kindness of many, the outreach and support, the thoughts and prayers. We are blessed by the love of these friends, family members, and even complete strangers. Whoever chooses to follow Sawyer's story, whoever chooses to be in her life -- they are so lucky. She is incredible. Every day she shows us how strong she is. But that's not all... she's sweet, too. And smart. She has the most precious smile and the FIERCEST cry. With all this personality, all this spunk, you'd never know she only has half a heart. And with only half a heart, she has this amazing ability to make others' whole. She has touched so many people in such amazing ways... and we are so incredibly blessed to call this inspiring, beautiful, and perfect girl our daughter.