I’ve heard that making the decision to have children is making the decision to forever have your heart walking around outside your body. Last night, as I reclined for several hours in the dim light in the back corner of Georgetown’s NICU with my finally-5lb baby girl warm on my chest, I tried to mentally prepare myself for another unexpected surgery on ‘my heart’ named Avery. Still one week from her gestational due date, but already 16 weeks old, I told the tiny warrior stories of her great strength, how many people she has already touched, and how much she is loved. I told her about everyone I could think of who I know is praying for her, and while I recited the long list of love, she seemed to fixate on my freckles and her eyes moved toward the sound of my voice. I felt the sting of her sharp little nails dig into my skin as our heartbeats touched and I tried to send her every bit of strength and love I had within. I then chuckled as I realized that this little wonder is stronger than I could ever be. Heck, she was giving ME strength. I trust that all who have been parents can relate to the feeling that you would give anything to take your child’s place in a hospital bed or an operating table. However, they’re undoubtedly much more courageous than we are.
I left the hospital very late and we arrived again this morning very early. The hours before surgery on ‘my heart’ inevitably always feel like a month. We took the opportunity to cuddle all morning with Avery before they took her from our arms and placed her into a transport isolette to wheel her away. We stood by and cried quiet tears and felt the raw pull of not wanting to let her go again with gowned and masked (albeit very kind and undoubtedly talented) strangers. It was apparent to me even as I melted into Quin’s arms that I was shedding tears for more than this surgery, more than the feeling that her sister was present, and for more than the fact that I was so tired I could hardly stand. I cried for the very young mother who stood alone watching for her own daughter to return from the OR who told me her baby was (also) a ’23-weeker’ who was now 5 months old and had yet to feel fresh air. I cried for the reality that I didn’t feel social, or even friendly, when we met a new NICU mom who was facing her first week living in our new hell, even though all I wanted to do was hug her. I cried for the fact that this isn’t Avery’s last surgery before she can come home. I cried for all of the unknowns that remain. I cried because there were so many emotions as the warrior who survives clinged to my chest with pure instinct after I had to give the specialists permission to pry her away for another invasion. I cried because there are so many unspoken words when you are the mother of micropreemies. (As they come to me, I will continue to try to “speak” the words here.)
After stopping in the Chapel to put Avery and Sienna’s names on an overflowing prayer board, we went out for some air, grabbed some food, and tried to talk of other things to pass the time. In a few hours the surgeon called to let us know that she had done really well and that he was “very pleased.” I finally exhaled.
Since coming back to the NICU sedated with a breathing tube and an eye patch, she has been resting comfortably all afternoon and evening and her vitals are strong. She’s currently still off feeds and on IV’s, and they’re hoping to restart her food and get her back on the nasal cannula sometime overnight. The surgeon will continue to check on her over the next few days and has indicated that he will know if the surgery was effective in relaxing the tension on her retina in a few weeks. The likelihood of her having vision will not be known for many months.
The days to come will reveal whether we transfer back to Fairfax and what date her next surgery will be. We’ll post as often as we are physically and emotionally able. Until then, thank you to the nurses, anesthesiologists, and to Dr. Lai. Thank you friends, employers, and family for your love, your support, and your continued prayers.
And, thank God for our blessed child, her potential, her strength, and for the hope of tomorrow. Despite our current unknowns, there could be no greater honor or no greater source of wisdom than to have the opportunity to walk around ‘with our hearts outside our body.’