Retinopathy of Prematurity (ROP)

Day of Life 66 ~ Corrected Gestational Age 34 Weeks, 1 Day

The last forty-eight hours has been incredibly difficult, however we have survived them. 

On Wednesday, Zoe underwent laser surgery to treat her ROP eye disease.  The surgeon needed to stop the growth of her abnormal blood vessels.  Surgery required Zoe to leave the unit (taking her first field trip) and be put under anesthesia (which required her to intubated). 

Zoe's disease was progressed to Zone 2, Stage 3, pre-plus.  The laser destroyed all cells from the equator of her eyes (yes both of them) forward - out toward the world.  This means no cells, healthy or diseased, will grow past this point.  The hope is Zoe will be able to maintain "normal" vision with an increased risk for near-sightedness, which will be able to be corrected with glasses.  She also lost some of her peripheral vision. 

Zoe was returned to the unit late Wednesday morning and the surgeon proceeded to examine Isabelle and Cecilia.  The news was not great. 

Both Isabelle and Cecilia were showing the disease in Zone 1, Stage 3, plus disease.  Isabelle would require surgery within 48 hours and Cecilia would need surgery within 24 hours.  Definitely not what I expected to hear, especially after the first eye doctor stated "if he were a betting man, neither of the girls would require intervention."

The girls were scheduled for surgery first thing Thursday morning. 

Cecilia's disease was located furthest back in the eye, creating the most complicated situation for treatment, as a result we were presented with the option of a "quasi-experimental" treatment ~ an injection of medicine directly into the eye ball called avastin.  The avastin treatment is relatively new and comes with an increased risk of death. 

Accordingly our options were: 

A)  Do nothing which would result in retinal detachment and ultimate blindness;
B)  Laser surgery which would eliminate a majority of her blood vessels (good and bad) resulting in what would equate to being legally blind; or
C)  Avastin treatment with its increased risk of death. 

The avastin treatment is an injection into the eye ball which stops the growth of abnormal blood vessels, allowing the healthy vessels a chance to progress forward before the abnormal vessels start growing inward again.  She will require laser surgery in the future to completely eliminate the abnormal blood vessels and prevent retinal detachment.

We have always stated we just wanted Cecilia to have a chance and the avastin treatment gives her her best chance at normalcy.  Please pray for Cecilia.

Cecilia was taken down to surgery at 11 a.m. and returned from the operating room at 1:15 p.m.  She was also intubated.

Isabelle followed going down surgery at 1:45 p.m.  Like both Cecilia and Zoe, Isabelle was placed under anesthesia and intubated.  Isabelle was having laser surgery, like Zoe, but unfortunately, Isabelle's disease was significantly worse than Zoe's.  Isabelle's surgery took over 4 hours but the surgeon stated it was well.  Isabelle will lose more of her peripheral vision, but she should still have "normal" vision correctable with glasses. 

The girls all have severe eye disease but thankfully the surgeon believes that none of the girls' central vision (ability to see forward, read, etc.) was affected.  Not progressing to Stage 4 of the disease was very important.

The girls are currently all intubated, meaning I can no longer hear them cry.  It feels like a step backwards, however in the NICU this is unfortunately par for the course.  Sometimes you need to go backwards in order to go forward. 

Please keep praying for our girls and please help us find the strength to endure all the pain the girls must be feeling. 

Love Always,

Adam & daneille