Humor Me

We're approaching another landmark date in my world, so if you haven't learned by now, that means flashbacks to last year and blogs spent reflecting on our journey. There's nothing earth shattering here, so you are welcome to skip this one; I promise it won't hurt my feelings. Heck, I'm even writing it on my phone (which I struggle with.. I'm a keyboard kind of girl after years of college followed by more years at desk jobs) so there will be more spelling / grammar / auto correct issues.

We are approaching September 10.. Addie's original due date and now it is considered her adjusted birthday. Developmentally our girl should be hitting her 1 year milestones. Obviously we are not even close on a lot (many.. Most..) and that's ok! We're closer to those than her actual age (15 months tomorrow.. Can you believe it?!) milestones. Again, I'm ok with it.

The key in our world is making forward progress. It doesn't matter (as much) where you are as long as you are making progress and progressing in order. I'm not as worried about Addie's milestones versus where she "should be" for a few reasons.. The first is easy - I'm purposely, blissfully ignorant(ish). She's our first so I have nothing to compare to as far as first person experience, I purposely don't allow myself to read the "What to Expect" books, and I'm not around many of those kids who would be her age group peers (I don't think I'm avoiding.. We're just not around a lot of kids..). The second is that I don't know any true peers of Addie's.. I don't know any other micro preemies with Grade IV bleeds who have had 4 major surgeries who spent 166 days in the NICU.. Of course she's going to be more delayed than her corrected age.. We still pray everyday that she will catch up, and I believe in my heart she will. Addie just does everything in her own time.

So, the beautiful thing is that looking back to this time last year, we have come so, so far. This exhausted, emotionally drained, terrified of what the next day, hour, minute would bring mommy couldn't have imagined the amazing little girl (she's no longer a baby.. Where does the time go?!) resting beside me tonight. This time last year we were fresh off of our second NEC scare and approaching the climax of our feeding, hydrocephalus, GERD, ROP struggles. Addie was about to go through her tremendous / disturbing / gut wrenching weight loss phase.. I've never posted pictures from those days (weeks?) because they break my heart to look at.. I don't know that I've shown anyone those pictures because they are some of the most painful moments of our NICU stay for me.. To me, it was the only time during this adventure that she truly looked SICK. She had looked tiny, frail, unreal, bruised, puffy, twitchy, jaundiced, etc, but this was the first time she looked sick and it broke my mommy heart. My plump, rosy, hot box of a baby was replaced by a gray, listless, terrifyingly thin, cold (we had to use 2 blankets, a hat and 2 outfits to try to keep her warm) shadow. She stopped smiling and moving and just stared blankly through you.. It took everything in me to visit and sit with her those days.. It just hurt so, so much. It was terrifying how tiny she was after just a few days of not keeping anything down..

But that was last year!! Three surgeries later and several months removed from our NICU days and Addie is thriving. She may not be eating much (any some days..), we work insanely hard every single day, and she is still very delayed.. But she weighs almost what I weighed at her corrected age! She's standing supported for a few seconds at a time, clapping, waving, smiling, saying "bye-bye" and "hi" and almost saying "uh oh" and "bubble" (buh-buh). She loves to bounce with us on her Pilates ball, and she has the most amazing twinkle in her eyes when she looks at you.. It's pure magic.

So, as I told a dear friend just this morning.. when things seem hopeless and never ending, you have to just keep surviving one more day. Sometimes that is all you are capable of.. But, eventually, by the grace of God, your situation will improve. Last year I couldn't imagine a single day that wasn't filled with life or death struggle or an end to our time in the NICU.. And now look at how full of life & joy our world is! I'm not saying its easy or that I'm even cheerful about it all the time.. But when I stop to look back just 12 months.. How blessed are we?!

Below are some updated pictures of Addie doing her version of " So big!!!!" and showing off her gtube, Addie on her 1st ever Market Square putting for Philip's birthday, struggling through more tummy time, and a really neat quote I found on Pinterest. Enjoy!!