Friday, August 2, 2013

What We See Is What We Have: Near Perfection

Let's begin with a goofy picture of Punk Rock Baby Tootsie.

Her hair and the shadows of the blanket beneath her head conspire to make it appear she has quite the mohawk.  In fact, she has a surprising amount of corn-silky-soft black hair in a pixie 'do.

Baby had a great night last night.  She had only one apneic episode; she tolerated her feeds well and appears ready for an increase in volume; she began sucking on a binky.

When swaddled and snuggled in for the night, she was so calm and expressive with her eyes (so very cute, our nurse told us), that the nurse beckoned others to come admire her, too.  We're totally biased, of course, but Tootsie is clearly building a dedicated fan club.

Last night's nurse let us know that she was requesting to be part of Tootsie's Team.  I'd forgotten that my sister (and mother of a preemie cousin who is now a healthy five years old) shared that our baby would have a core care team of nurses.  Because we know that she will be in the hospital for at least 21 days to run her courses of antibiotics, they're beginning to assemble Tootsie's Team.  She's taking letters of interest and applications and clearly showing off to win over the pool of qualified potential draftees.  Tootsie's Team and her room will be our home away from home, and we will all become familiar with one another as we collaborate on her care and the nurses train us to take over delicate aspects of protecting a preemie baby.

We were present for a consult and examination by the Occupational Therapist.  She checked reflexes and observed her movements and alertness.  We all noted her rooting behavior, one of the signs she is preparing herself to suckle a bottle or breast.  Her rooting and sucking makes her eligible for daily scoring on a feeding readiness scale, and we will get to present her with an empty breast soon for her to practice licking and tasting.  I'm very excited about this step and motivated to breastfeed, not only for the health and convenience benefits, but because it's a most awesome bonding experience for mother and baby.  I've cherished it each time, and am more determined than ever to breastfeed our last little one.  I'm pumping every three hours around the clock to stimulate my production and generate milk for her feeds.

This afternoon was our Family Meeting.  When I told my brother in the USVI that we had a Family Meeting planned for later in the week, he responded, "Hmmm.  So you and Husband and Tootsie will get together and talk things out...?"  Haha.

The Family Meeting comprised Husband and I, two of her nurses, the social worker, a hospital administrator, a neonatology intern and the neonatology fellow, who ran the meeting.

We expected to discuss growth and development goals, thresholds for stepping down to the Special Care Nursery, and plans for family accommodations after my discharge from the hospital tomorrow.

But the meeting began on a very serious note, with a review of the events around her infection and its severity, and how The Team would continue to address potential ramifications.

Honestly, once we'd gotten through Wednesday and marked two clear blood cultures and Tootsie's promising recovery, The Infection moved to a more distant and less significant part of my hard drive.  But the doctor dragged it right back onto the desktop, reviewing mortality rates and statistics related to defects and brain damage.  Tootsie would have another spinal tap, soon, the doctor reminded us, to rule out lingering bacteria in the meninges and fluid.  And close to the end of her 21-day courses of antibiotics, Tootsie will have an MRI so we could see effects on the brain of the infection, if any.  Statistics are around 50% likeliness that she will have some neurological effects (developmental delays, cerebral palsy, seizure disorder, among other possibilities). While we're fortunate that infection was expected and antibiotics started right away, she still grew cultures from her first lumbar puncture, and we don't know how long she was suffering from infection in utero.

We moved on to discuss her recent notable developments, alertness, and activity levels, and goals for her feeding.  Much more fun topics!  We closed the meeting by talking about my discharge and options for sleeping on the couch in Tootsie's room, temporarily occupying a family dorm room in the hospital, and making use of hospital-provided taxi vouchers to shuttle me to and from my sister's apartment while I am still healing from the c-section.  We toured the dorm rooms (not unlike the closet-bedrooms I slept in in college), and they showed us the microwave and fridge and stash of saltines and peanut butter and jelly packets for parental snacking under duress.

And then we went back to see Toots, who was bright-eyed and adorable as usual, enduring a diaper change and looking, really, quite normal.

It turns out it's hard to look into those eyes and worry.  She's a pretty reassuring bug.

In the conference room, the specter of having a child with neurological challenges felt scary, disappointing, mysterious.  But with our baby in front of us, progressing as a child her gestational age would and should, the fear is unsteady on its feet.  If this little girl, with a tight grip on our fingers and eyes that respond to our voices, has developmental problems, we will certainly learn about them and grow up with them together.  Right now, she's exactly what we signed up for--a baby (and she has already far exceeded our expectations).  No diagnosis or knowledge revealed by testing will change how she presents to us at this moment, and what we see:  a nearly perfect baby human (and a darned cute one at that!).  Of course, not all is as it initially seems sometimes--a mohawk might just be a halo, or a crown, or an illusion.  But the magic of parenting is how your children are immediately yours, no matter what.  Oh how I feel that today.

We're bound to find out lots of things along her way--quite possibly that she's disorganized, impulsive, maybe weepy under duress like her mother, or a little grumpy like her dad.  She may have a thing for numbers and not for spelling.  She could have two left feet.  She might sing off key.  Nevertheless, hers is exactly the model we've fallen in love with and are taking home, and we accept all her features and those which will reveal themselves to us as she gradually reveals herself to the world.

It's such an exciting prospect, that we're only on day four of this unfolding saga, the discovery of our new family member.  It's worthy of a daily celebration.



vertigomama said...

Big Baby T fans over here. So great to get good news daily. Hoping for plain sailing for 21 days.

Carol Schrammel said...

Dearest Jenny . . . You are amazing. Tootsie is so blessed to have you and Jon as parents. She has so many things in her favor and she is certainly a strong little gal!!!! I spent 35 days in a PICU (on a respirator) and another week in regular hospital when Michael had infant botulism at 4 months. Wasn't across the country--just 100 miles away from home in Sacramento, living with my best friend and shuttling between there and the UCD Medical Center. I, too, was pumping every 3-4 hours so that Michael could get my breast milk through a feeding tube (supplemented by formula). It was a long 6 weeks AND we all made it through. Keep breathing, taking care of yourselves, and looking into that beautiful little girl's eyes. And we will all keep sending our positive thoughts and prayers across the country! We love you so!!!!

Lynn HR said...

And Tootsie will find that she is loved completely for who she is, every step of the way. No wonder I love you Ms Moore....