Buckle Up

Once upon a time, I quantified a luxury by its decadence.  To me, luxury was an afternoon mani-pedi or a nice glass of wine.  Luxury has become a day in the NICU without an “event” of which we have had four full weeks.  While the medical team has been waiting and watching Olivia’s PDA, she has quite nonchalantly lain in her isolette growing while Mommy sat by her bedside greeting staff with a smile and a sigh of relief.  This is luxury.  Brief spurts of the NICU alarms that signal the completion of medication or a short desaturation where Olivia corrects herself, this is luxury.  Being told there is no change to her treatment plan for the day, luxury.  Eating three square meals a day?  Luxury!

We knew the day would come where decisions would have to be made and challenges faced.  That day has come and it’s time to buckle up for the next round!  Olivia’s past three echos have shown a change from very large to large to “moderate to large” PDA, respectively.  None of the reports provide an exact measurement of these changes.  In an effort to close the PDA medically, the staff have been providing Olivia with less fluids and doses of Lasix.  This is not a sustainable treatment option.  While Olivia has grown to one pound fifteen ounces (!!!), she is not gaining and growing as is ideal for her thirty weeks of age.  The medical team has determined that the PDA is not providing ample blood flow to her intestines, a plausible causation for her original bowel perforation and the reason for Olivia remaining without breastmilk feeds.  None of us would like a repeat of that event!  Thus, we are exploring a PDA ligation.

PDA ligations used to be the standard treatment for all preterm infants with a PDA (http://www.nhlbi.nih.gov/health/health-topics/topics/pda/).  Over the years, neonatologists have found they could treat the problem medically with a form of Motrin.  Treating the PDA medically is most effectively done within the first two weeks of life.  Olivia’s medical team was exploring this right as her bowel perforated.  They did not initially treat her with this medication as it is linked to poor renal performance and Olivia’s kidneys struggled within the first week of her life.  Performing the PDA ligation is linked to a variety of complications, one of which is brain damage as a result of the change in blood flow and pressure to the body.

Treating Olivia’s PDA medically is not an option as we are well past the medication’s effective period and it poses an increased risk of bowel perforation (no thank you!).  Olivia is doing great for now; however, due to her PDA, they have been unable to fully wean her oxygen settings and are unable to begin feeding her as is necessary for her to grow and mature.  It is time for us to accept the risks involved with a PDA ligation and move forward.  This is daunting as we were relieved by her relatively clear brain ultrasound.  Needless to say, the medical team feels this as well.  They assume based upon Olivia’s gestational age at birth, extremely low birth weight, presentation of her PDA (i.e. wacked out blood flow) that she will struggle as her body begins to reroute her blood post operation.  It is this struggle that can often cause the brain damage.

The surgery itself is very quick and the cardiologists at Lurie Children’s Hospital are quite practiced at it.  It appears this is the only option for Olivia in order to move forward.  We await confirmation from our attending physician and the surgeons.  In the meantime, we will enjoy these luxurious days Olivia provides us.