Avery had her best blood gases ever yesterday, and again today, which is great news. Today, however, there were several other things in the nurses report that made us worry. We know these ups and downs are to be expected in the NICU, yet it doesn’t make it any easier. Step forward one, step back two. Step forward two, step back one. It was predicted by all that this back and forth is just the way it is… we shouldn’t be surprised by it ever… AND…. it’s still crushing.
I’m realizing the emotional and physical toll that this is taking on us. The last few days in particular have been really tough for me (mom) to show up the way I want to in the world, to the point where I can barely figure out how to get my bearings on what day or time it is. I am struggling with finding peace in this reality, communicating effectively, being the friend I’d like to be for my dearest friends who are hurting this week too, knowing how to actually connect to my dear husband without making him think I’ve lost my mind, or even how to nurture our soulful dog. As any parent likely knows, perhaps the hardest part about having a hard day personally is that on top of your own pain, you then feel guilty about having a hard day when your little one is having an even harder day and those around you are hurting too. More emotions. How does my body even produce this many tears?
I know the rawness will someday fade and I am so grateful for the personal and touching emails I have been receiving from other moms who deeply (and so unfortunately) understand how hard it is to grieve the loss of so much, while still being strong for the miracle of the twin who fights on (and still be a good wife, friend, family member, employee, step-mother, neighbor, etc). I am so appreciative to those of you who are reaching out to us in a multitude of ways. I regret that we can’t promptly respond to all, but I know those of you that write or call don’t expect that we communicate until we’re able or have the energy. Please know that we do appreciate every message.
Many of you have shared how much you appreciate that we are sharing our story so openly and unfiltered, and that it’s helping you tremendously by our doing so. Thank you for telling us. Perhaps that’s another thing that comes with this level of pain….a lack of a decent filter and a whole new perspective on what matters most. Perhaps I’ll change my mind someday, but as I sit here bleary eyed and type this, my current view is that if being totally honest and open and revealing my vulnerability can help someone (or be good therapy for me – which it is) then so be it…
Yesterday, as I walked into the hospital to visit Avery, I saw lots of beautiful children, several sets of twins, one stroller with triplets, and happy parents wearing smiles and name tags exiting the building. I felt it without knowing…. it was the NICU annual reunion. It was the day each year that results in one of those beautiful photo collages on the walls of the halls to the NICU that we have come to know all the faces on. The same collages that each time I walk by them, I consciously visualize us being there each year of Avery’s long and wonderful life.
I dropped to sit on the curb and just take it all in. I breathed deeply and soaked in the energy and hope pouring from those double doors back out into the world. I visualized Quin, Maddie, Avery, and I being there next year, and the next year, and the next year. I visualized Avery giving her doctors and nurses huge hugs and telling them, “Thank you for taking care of me!” and, “Thank you for believing in me!”
As they passed, I asked one mother who came out with her daughter if it was, in fact, the NICU reunion. She confirmed what I already knew in my heart. I then asked if they had enjoyed the party and asked if they had been able to see her nurses and doctors. As we spoke longer, I shared with her that one of my daughters was in the NICU. She replied that she lost her now 5-year old daughter’s twin sister in the NICU 5 years ago. She continued, “You never get over it… and some times it’s really tough….but it’s also worth it.” Her red-haired, bright eyed 5-yr old daughter chimed in, “Yes, it’s worth it!” as she finished shoving her last bite of yellow cake into her perfect little happy body. I closed my eyes and visualized Avery saying the same thing before anyone believes it’s even possible for her to talk. It was not lost on me that God had me “meet” a woman who would share this particular story and knew so intimately what was heavy on my heart.
Avery has reached 2.7 lbs and, although we’re all having ups and downs, Avery is an amazing little miracle and we are all marching on. We have so much hope for her full recovery and for her attendance and inspiring stories at the 2011 NICU reunion for those who “graduated” in 2010!
Dad got to hold her today, and as long as lil’miss Avery cooperates, he’ll also get to hold her again tomorrow on his birthday (8-31). I have a feeling that this is one year we will all know what he’s wishing for as he blows out his candle.
Thank you all for continuing to lift our family up with your prayers.