So much has happened since my last blog post. I won't bore you with the medical details and disappointments we've faced, but instead write a quick summary.
Avery was released from the NICU exactly one month after her admission. We were not convinced that she was ready to go home, but complied with the discharge plan only to return to the hospital three days later. Avery was having dangerous episodes of oxygen and heart rate dips. She is seemingly stable now but still walks a fine line between stable and critical and we never know what could tip her over the edge.
The plan is to "limp along" until she's three months old in hopes that growth will allow her to be a mouth breather more easily. However, limping along is easier said than done.
Avery's care is intense. Our in-home nursing applications are still being processed by our insurance and the interim is proving to be brutal. Her care looks a lot like projectile vomiting (with the added risk of asphyxiation for a baby with an inconsistent airway), constantly blaring monitors alerting us to a problem, sleeping in "shifts" (Avery can't be unsupervised for a second, even while sleeping or crying) to ensure that she's never alone, and constant screaming. We've seen improvement in the last few days, but most of Avery's days are spent in panicked screaming fits. Her breathing is labored, made worse by her cries, thus increasing her sensation of suffocation... It's a vicious cycle. Another painful element is that, like any child, Avery is biologically wired to "suck" as a form of pacification. She cries, looking for comfort that she can't have because her breathing becomes increasingly unstable. The only source of comfort for her is the tired, helpless arms of parents. At times, it feels torturous. She writhes and claws at my chest, gnaws on her hands between cries and there's nothing I can do to help her. She often goes through periods of holding her breath and I find myself unwittingly holding my breath alongside her, willing her to take in oxygen.
Through this process, the Lord has been teaching me the art of withstanding trauma. I have spent a large portion of my life in unique crisis, but I've come to know a new frontier of pain that comes from watching my own child suffer. I've never known anything quite like it.
This has been a useful exercise for me as I often, in an effort to cope with stress, worry about the future. I strategize and anticipate the next obstacle, but often find myself more anxious and fearful. There is no grace for the troubles of the future because I'm not there yet. The Lord has been reminding me that His mercies are "new every day" meaning I have to ask for the new mercies every morning that are perfectly formulated and allotted for TODAY. I can't worry about tomorrow because tomorrow isn't here. I have to look down, tackle today with His abundant supply of grace and then start the process over again the next day, asking for tomorrow's grace when tomorrow comes.
At the end of my pregnancy with Avery, I feverishly researched her possible birth defects and associated syndromes. I knew the most likely option was Crouzon syndrome (though, our initial genetic tests have come back negative for the common Crouzon mutation), and with much horror, made myself as much of an expert on the subject as possible.
Google images can be terrifying.
As I grappled through the questions,
"How will she look?"
"Will she even be alive when she's born?"
"Will she be able to nurse?"
The Lord just spoke to me, "Look up."
It finally dawned on me that He was reminding me to look beyond my immediate fear and remember HOPE. Even if she were born with a syndrome and all the associated defects, one day the shock would wear off and we would learn a new way of life, our new normal. We would take Avery on vacation. I would homeschool her. She would dance in ballet recitals and try to avoid eating her veggies. (I say "try" because girl WILL eat her veggies. Hehe.)
There is hope. It doesn't lessen the pain, or take the place of processing through grief, but it reminds us that life will continue. I have hope, because the Source of all hope lives inside me. I know He has been with me in suffering before and even when all I can see and feel is darkness, I know He is and always will be there.
During Avery's second hospital stay, she was admitted to the PICU (pediatric intensive care unit) and transferred to "the floor" for general pediatric recovery, once deemed stable. One afternoon I realized that, thanks to food delivery services, I had not left Avery's hospital room in DAYS. I decided to venture out and remind myself that an entire world still existed outside those four walls. On the way, I noticed a young girl, accompanied by her mother and others, slowly trudging down the corridor, pushing an IV pole. Having spent five weeks in a children's hospital, I had sadly become accustomed to seeing kids in suffering so I continued, unmoved by the sight of them. It wasn't until the elevator doors were closing that I caught the tiniest glimpse of the back of the little girl's head and noticed the patches of bare scalp, missing her golden hair. I suddenly realized the significance of the contents of her IV bag, slowly dripping into her tiny veins.
This little girl had cancer.
My elevator glided downward as I choked back tears. Avery's situation is precarious, but her diagnosis is not a death sentence as of yet. My heart broke for the girl and her family, and yet felt so grateful that God has chosen to sustain Avery's life. May He choose to sustain that little girl's life as well.
Over the past few months, I have often thought, "This IS really hard... But at least I'm not marching to a death camp, separated from my husband and children. Or huddled, holding my babies during the last moments of their lives, surrounded by the darkness of a gas chamber. Or stranded on a mountain top, waiting for religious extremists to close in, praying for exposure or starvation to take me first."
The suffering we face is real, but this could be worse. Things could be much, much worse.
In trials, may we always look around and acknowledge the indescribable pain of those around us. Not to compare, but to remind us that we're not alone and that there are those suffering far worse than we. I feel oh, so lucky. Things could be MUCH worse.
Thank you all for your continued prayer and support, but especially that of my family, who has stepped in and gone above and beyond to be the hands and feet of Jesus to us during this time. We are so grateful for you.