Those beautiful eyes

 

Evelyn had the most beautiful dark blue eyes. I could look into them all day. They really were the windows to her soul, and whenever we looked at one another I felt that unbreakable bond that we shared. Those eyes told us exactly how she was feeling, and ultimately it was with her eyes that she told me it was time to say goodbye. That is a part of this journey that is yet to come. 

Today I want to tell you about one of the traumatic procedures that neonatal babies often have to endure, Evelyn being one of them. This is Retinopathy of Prematurity or ROP eye exam. The test is performed on babies that are born prior to 32 weeks and under 1501g in weight. Evelyn was born at 32 weeks and 2 days, however she weighed 1324g. That made her eligible for the test. ROP is caused when babies eyes haven't developed fully at birth. Sometimes the premature birth will cause the blood vessels to start to grow abnormally in the retina and this forms scar tissue, damaging the retina. If left untreated ROP can cause blindness. 

I had heard from other parents, and in truth nurses, about how horrible this test was. Some parents chose to leave their babies in the care of the medical team for the procedure, as they did not want to witness their babies going through such an ordeal. I knew I couldn't do this. No matter what long-term scars this left with me I would be there by her side. I would watch exactly what happens so that she knew she wasn't alone, mummy was there by her side, loving her. 

Evelyn was given some medicine to help keep her sedated and as comfortable as possible first thing in the morning, and eyedrops applied to widen her pupils. Then to prepare her for the procedure she was swaddled so that she couldn't move. I think this tells you already that no amount of sedation and calming stops this being incredibly uncomfortable. A tiny metal implement is then used to hold open one of her eyes. It hooked under both her top and bottom lids. A gel was then applied directly to her eyeball. The best way of describing how that looked was if you've ever had a Mr Whippy - it was piled up on her tiny eyeball like that. The ophthalmologist then places their special camera direct onto her eyeball. At times her eye needed to be moved to see all around it, moved with another little metal implement. Then over to the other eye. She would make these clear noises of discomfort, and it broke my heart to witness her having to go through this. As soon as it was over, she was unwrapped and handed straight to me and we cuddled for the rest of the day, I didn't move until I absolutely had to. She needed to feel safe again and, in truth, so did I. 

Thing was, that was one of two tests she needed for ROP. She had to endure it all again a second time.

It has left me with long term scars, which I accept and deal with when I have to. I would not have done anything differently. Whenever I have eye tests now, I get very uncomfortable, on edge a lot through all the tests, I don't like anything that close to my eyes. In my first year of my degree, I chose the Health Science module and the only section that made me squeamish, and feel very faint, was the section on eyes. I haven't really faced the memories of this test until today properly, I have avoided it massively. Writing this my heart has been racing, my skin feels tingly, numb, like ice cold water is running down me, my face feels hot, my leg won't stop twitching. I don't feel safe. But it's a very important part of her story and I felt I needed to tell you all about it because 1. it happened and 2. it has and will happen to many babies. These are traumas that babies will remember in their bodies and, if we don't teach them how to return to safety and process these events, could end up chronically, mentally and physically, unwell in their lives. 

What it does remind me of though is how strong and resilient these little babies are. The procedures and tests that they are subject to at such a tiny age are brutal. Yet they keep going, they keep fighting. Yes, ultimately Evelyn lost her battle, but boy did she fight. Honestly, I don't think you get much stronger humans than NICU heroes.