“You never know how strong you can be, until strong is all you can be.”
We are remaining strong despite not knowing how we are doing so. Everyone keeps asking us how we are staying so strong. We are staying strong because that’s all we can do.
At any given moment, and often all at once…. We are hurting, we are angry, we are ‘fighting the constant thought reel and inner critic in our mind,’ we are grieving, we are torn, we are exhausted, we are hopeful, we are joyous, we are grateful, we are blessed, we are fighters, we are advocates, we are speechless, we are rambling, and we are parents.
And, most of all, we are united in our conviction and love for Avery Rose.
Our precious baby girl soldiers on valiantly. As of yesterday, she is now officially one calendar month old (per a previous post, we counted her one-month birthday a few days earlier because the doctors had originally told us that although the entire journey will be difficult, the first 30 days are often the most critical).
She weighs 2 lb 3 oz today (Is it possible that 2 lb is good news? Yep, you bet your buns it is!) and her vitals have remained strong and stable throughout most of the last several days. The variances the doctors made in her fluid input, have fortunately decreased her output, as we have all been praying for. It was beyond wonderful to hear that information and to know her kidneys are functioning well.
We were excited to see yesterday during our visit that our powerful little princess actually lifted up the entire lower half of her body with just her toes! (you’ve gotta try this yourself when you’re done reading this post – it’s a pretty challenging thing for most, let alone a 2lb preemie!) We silently applauded and cheered in our hearts for her heroic strength.
The doctors are very slowly weaning her from the ventilator, which is making her lungs work harder each day. Therefore, her oxygen needs are fluctuating a bit more the last few days than previously. Her dad calls this her “training,” and so far she’s showing good progress.
With “training” and “progress” comes challenges, and the ups and downs are often too much for me to witness. We had a terrible scare with her vitals while visiting her last night, which made me instantly nauseous. Fortunately, Quin kept his wits about him and helped me to a chair, then helped the nurse with Avery like he was trained professionally at doing just that. Avery ended up recovering well, and when we finally left the hospital late last night, I felt like I had aged 10 years. Our calls in the overnight and early morning hours brought the positive news that she was stable.
We’ve written about it before, but I’ll share again that the NICU is an eerie place where you can instantly lose energy and courage. Most days it literally feels like you are in a slow torture as you stand among the sites and sounds and the flurry of nurses, respiratory therapists, doctors, cleaning crews, blood deliveries, newborns being admitted, crying parents, tired parents, happy parents, beeps, blinking lights, alarms, latex gloves, hand sanitizer, cries, mixed messages, “worst case scenarios,” flashing colors, and fluorescent bulbs. I’ve shared this “slow torture” word choice with a few other NICU parents in conversation, who all simply close their eyes, and then nod quietly with absolute understanding. Quin and I both find that few words have to be spoken between NICU parents to feel like you are the closest of friends in the universe and will somehow always be connected in ways that even our dearest friends will never comprehend (and, God willing, never, ever, ever, experience!) There’s something that the other moms and dads that we are intertwined with, and share the quiet elevators with in the children’s ward of the hospital with, just know without speaking.
They too will spend a large portion of 2010 in this place that no one ever wants to be. They too will come to know the details of this phenomenal facility and the names and faces of the people at Inova Fairfax that we are so grateful for and so blessed to have nearby, yet wish we had never met.
Actually, we do wish we had met them….just not in this way. If you ever meet a NICU nurse or practitioner anywhere out in the world… hug them. Then, tell them they are a true saint. They personify the essential word for the environment within which they serve. Strength.
Yesterday in the sadly crowded elevator we know all too well, we met a mother who was carrying a pizza and an even heavier burden. Her 14-year old son, Owen, is battling inoperable cancer and she was delivering him a pepperoni pizza and a smile for dinner. I cry for her and all the mothers in those halls. I pray for her child and all the other innocent children in those beds. I’m quite sure Owen’s mom has no idea how she keeps moving. Somehow she does. Strength.
We met very early this morning with the Pediatric Neurosurgeon we had been waiting all week to talk with about Avery. He is very respected, kind, and experienced, and was fairly encouraging given the circumstances. Avery will have surgery next Friday to put in a ventricular reservoir. This will be an interim procedure until she’s full term and can have another surgery to place a shunt within her tiny frame. The success rates for these procedures are high and the benefits for her outweigh the risks. We humbly continue to ask for your unceasing prayers for her, and extra special prayers for her increased strength until, during, and after the procedure on her head next Friday.
We also had the follow-up appointment for Quin’s hand surgery today. They took off the massive bandages, pulled out the stitches, and put his hand in a hard cast for at least the next 2-3 weeks so it can continue to heal without risk of additional injury. Although I know he’s in a lot of pain (in addition to the injury and the surgery, the pain meds he was prescribed made him sick and gave him insomnia) he has not complained once. Strength. As he was given a choice of the color for his cast, he opted for a currently very meaningful color…