Wednesday, July 31, 2013

Giraffe Club: Tootsie Is a Member

Last year our girls participated in an American Girl Doll Fashion Show.  They wore outfits from the brand, carried dolls, and attended numerous rehearsals.  They also raised funds for Isabelle's Giraffe Club.  Click on the link for Isabelle's remarkable story (and her parents' inspiring generosity and optimism), but, in a nutshell, the fashion show helps purchase isolettes for UCSD's NICU.  We've attended the show for multiple years, in part because we have some enduring American Girl Doll fans in our house, and also because my father works closely with neonates in his job as a perinatologist, and because our five-year-old nephew Jack was a preemie.  I honestly did not foresee that I, too would have a preemie baby, but along came Baby Tootsie, and she is residing in a Giraffe incubator here at Mass General Hospital. The units cost $45,000, and in my view, perform more critical functions than a luxury sedan, such as measuring the baby's core temperature and responding environmentally to help its resident regulate body temperature--one of a preemie's developmental challenges.  I'm feeling good about having contributed to this cause for several years.

Remember the Crash Test Dummies song "Coffee Spoons"?  One of my favorites:  "Someday I'll wear pajamas in the daytime...and afternoons will be measured out, measured in by coffee spoons and T.S. Eliot."  Yesterday was measured with breastmilk pumping (every three hours) with a disappointing yield (not uncommon after a promising first day, I'm told).  The aim is to stimulate my flow, without the help of a suckling newbrn.  And yesterday was measured by administration of pain meds (every four hours).  The day of surgery generally feels ok, even euphoric, especially when the yield is a new human in the form of cute infant.  Day 2 is dicey, what with the feeling that someone has driven over your midsection and the desire to reach the right dose of meds, which for me meant underestimating till about Happy Hour, when I appropriately got it right, and my outlook improved and I felt a surge of optimism and humor again, thankfully.

Against this backdrop including an exhausted husband, came the news that Tootsie did, indeed, have both an infection in her blood and spinal fluid (meningitis).  When Husband went to visit in the morning while I pumped and received another des of antibiotics, she wasn't looking so perky, and he witnessed a few drops in blood pressure and apneic episodes.  Scary.  He came back to my room, needing more sleep and with the news they were inserting a central line through her umbilicus and administering aggressive antibiotics.  She was described as a "sick baby."

The morning was not so fun, as I couldn't go see her as they were conducting the sterile procedure, and I stewed in worst case scenarios.  By the afternoon, however, we were both able to consult the resident and fellow doctors managing her care, who gave us straight-up prognoses as well as reassuring reminders:  they'd anticipated an infection and pushed antibiotics immediately, an advantage; she was still breathing room air with the aid of CPAP; and her gestational age and birth weight were in her favor as well.

By evening we learned that her brain scan was negative (for bleeds), more good news.  Apneic episodes decreased.  Her color was better and she was active (opening her eyes, stretching and wiggling). I spent a few hours with her, finger in her hand, my hand on her sweet little leg.

We need news of a negative blood culture to know that she is beating the infection.  We need fewer apneic episodes to rule out a need for intubation.  We need to get over this hurdle and back to the business of growing and strengthening.  That's what we root for tonight.

I returned to our room tonight in a lot less pain all around.


vertigomama said...

Rooting with you. Hoping for a miraculous Day 3 all the way around. Sweet Dreams

Bahamamama said...

Thanks for the updates Jenny, you are all in our thoughts and prayers. We are sending love, strength and healing! Your positive attitude and outlook are inspiring❤
Take care:)

Stacy Hall Gomez said...

Hang in there, Jenny, Jon and Faera. The cumulative effect of so many heartfelt good wishes from all your friends and family, as well as your own strength and positive attitude will help carry you all through to health. We love you!

Giraffe Pajamas said...

They also raised funds for Isabelle's Giraffe Club. ...