Congenital Diaphragmatic Hernia – an update on Lucy

When she was born there were three other babies with CDH in the NICU.  The only NICU in the state to handle this defect.  According to our nurse, these babies, these CDH babies, were the “Sickest” they ever get in the NICU.  All hands on deck.  The ECMO room was full, so we got a small room right next door, by ourselves, with the ECMO machine (heart/lung bypass-it helps give their tired little lungs and heart a break while they develop.  It’s not fool proof and many babies die on it, but it can be life saving).  The understanding was that most of the CDH babies needed a run on the ECMO machine, we were praying ours wouldn’t be an early one, and it wouldn’t need to be a long one.  It’s a one time shot.  Once they remove the machine they have to clamp off the carotid artery they use to hook the baby up.

St. Lucy has obviously taken quite a liking to our little girl.  We had a pipe dream that she’d be home from the NICU in time for her feast day, Dec. 13.  With a Nov 17 birthday, that was an impossibility, but we could hope.  Our “real” goal, our biggest prayer, was that our precious girl would be our Christmas present to our other children.  Home by Christmas.  My OB made me an appointment for 3 weeks post-partum, just to check on me and how well I was balancing home and NICU.  We were in it for the long haul. St. Lucy just didn’t get the memo.

We would walk into the NICU and ask “How is her pulmonary hypertension?  (100% of babies with CDH have it.  The weight of organs on developing lung tissue is seriously detrimental, it’s often what kills these babies).  Funny thing, Lucy didn’t have it.  None.  Her blood gases were always perfect.  Her blood pressure was always stable.  She cried at birth (something we were praying didn’t happen.  Funny, all the things that used to be “good” were suddenly not, with this diagnosis.) causing her lungs, not quite ready to be filled with such gusto, to develop a couple of tears.

She was intubated within seconds of her first breath and we expected that to continue until, best case scenario, 2 weeks later.  She was extubated on day 5.  Day Five.  Her surgery was done on day 3, thorascopically.  The only organ in her chest cavity was her stomach.  Her intestines had moved back down.  She didn’t have the typical 4-6” incision across her abdomen.  She was breathing and behaving so well.  The only meds she had to wean off of were morphine and versed.  No pulmonary drugs, no extra pain or sedative drugs.   She started eating, slowly, so slowly, but after only 16 days in the NICU our beautiful miracle was discharged from the hospital.  December 3, 2014. Our “Pipe Dream” was December 13.  My 3 week appointment I had my baby girl with me and my doctor and nurse were giddy with joy.