PART TWO - The Choice

(If you're just tuning in, we are in the midst of MWOB'S first mini-series by guest blogger Karen. Please read Part One to get up to speed. Remember to comment for our special giveaway - see sidebar.  And comment generously. You will receive an entry for each comment you leave this week.)

My husband is a pediatric nurse and knew some of the NICU staff at the University of Utah Medical Center so they let him and my stepdaughter in after Penni was put onto a ventilator. On the video, it is heartbreaking to see the ventilator vibrating her whole body, while she was trying to breathe on her own. (She stopped trying to “over breathe” the ventilator within the hour, but it is difficult to see her struggling in the NICU video). Once relatively stable, the life flight crew brought her into my room in a mobile isolette. Everyone was there – Penni’s grandparents, sisters and us, her terrified parents. Our pastor said a prayer and off she went for her short journey to Primary Children’s Medical Center. Another horrific moment that ranks up there as almost as heinous as the moment my mom drove me away from the hospital two days later with no baby in the backseat.

It’s hard to put something so other-worldly, complex and emotional into a nutshell, but in the interest of the attention span of all of you loyal readers, I’ll just say the next couple weeks are a blur in my memory. She was placed on an enormous life support system called “ECMO” that pumped Penni’s blood out of her body for oxygenation, then pumped it back in. The surgeons tied off the major vein and artery in the right side of her neck and then attached the ECMO cannulas. That was an ominous, nail-biting blur.

There was a blur of ventilators, nitrus oxide machines, medicine, nutrition & blood pumps. A blur of her body swelling and stretching abnormally large and disfigured as a reaction to all the plastic tubing.

A blur of sitting in the pumping room with stalls for moms like me whose babies couldn’t take the breast milk but all with a tiny hope that maybe they will live long enough to need it.

A blur of visitors, waiting rooms with my girls who couldn’t visit their baby sister because of an RSV ban, cafeteria food, countless specialists, around the clock alarms going off, constantly fluctuating blood pressure, heart rate and oxygen monitors.

A blur of chest tubes, picc lines and IV’s in feet, head, arms and chest dispensing meds I didn’t understand except for the huge amounts of narcotics she needed for pain. Constant need for blood and platelets, chest x-rays, brain and heart ultrasounds… it never ended. My husband said that you could tell when Penni was not doing well by the amount of medical personnel gathered around her bed and equipment. There were CROWDS of hospital staff gathering around her all the time – always setting us on edge… she was up and down constantly as I sat numb and confused.

The worst, the absolute WORST time was the week before Thanksgiving. The medical team thought Penni was stable enough to come off of ECMO life support. They wanted her off of it before trying to repair her diaphragm (the large amounts of blood thinner she was on to prevent clots in the tubing was a major concern when trying to do major surgery on her abdomen – the risk of bleeding out would be much higher). She was exactly a week old when they took her off of the ECMO machine (which included removing the cannulas attached to her major vein & artery in her neck). As the day wore on her oxygen saturation rates plummeted, her blood pressure rates were all over the map and her heart clearly could not take the strain of pumping blood to gimpy lungs.

Basically she was dying.

On this day, the doctors gave us our most heart-wrenching choice yet. A choice to try ECMO again (if they could get the cannulas back in) and risk the diaphragm repair surgery while on ECMO. 

OR...

...the other choice was to let her go.

They didn’t tell us then, but it turns out that no other child had survived a second run of ECMO at Primary Children’s. I’m glad I didn’t know that then. The other thing we had to consider was that there were no cases that anyone knew of nationwide of kids surviving a second run of ECMO that did not have brain damage. The surgeon made it clear that we could be creating a child with severe disabilities, no school, no friends, no playing, learning, laughing, eating, running, jumping… a quality of life that will change ours and our family’s forever.

This choice was beyond anything you could imagine – we could let our little baby girl go to sleep peacefully and pain-free forever and become our angel in heaven or we could put her through another run of ECMO with no real hope of a good outcome.

And we had no time –we had to decide right then before she slipped away...

I feel VERY strongly that both options were valid. I want it to be clear that Penni’s case was one in a million, literally. We did not believe that we wanted Penni to live no matter what the cost (our other kids, our family, our marriage, Penni’s quality of life)… but ultimately, in that fateful moment...

...I couldn’t let her go.

(Karen's story in pictures)


11-15-05 - Penni's first day of life spent on ECMO life support, starting to swell from reaction to plastic tubing

11-15-05 - Close up of ECMO tubes that are attached to her major vein and artery in her neck - this is Penni's blood

11-17-05 - Long view of little Penni and all her equipment - rocking chairs are where we sat to watch everything.

11-16-05 - Penni's feet

11-19-05 - Holding on to hope.

(On Thanksgiving Day, we will bring you the conclusion to Karen and Penni's story...)