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Preemie Chronicles: Blinded by Love

Posted: Feb 02 2015

I know you may have read many times before that Olivia is a special child, but every day I am reminded how miraculous she truly is. Now that I am about 95% recovered from my csection, all of Liv's specialist appointments are slowly resuming. First on our list was to follow up with her Ophthalmologist. It had been awhile since her last check up and it was bothering me – especially because I had noticed a difference in her vision as of late. 

Liv had her very first eye exam at 28 weeks gestation, which was 5 weeks after she was born. We were so happy to know that her vision at that time was good. However, being that she was still on oxygen support, it would need to be checked every 2 weeks as it would increase her chances of ROP. By the second exam, Liv was diagnosed with ROP and later diagnosed with STAGE III ROP. Retinopathy of prematurity (ROP) is a potentially blinding eye disorder that primarily affects premature infants weighing about 2¾ pounds (1250 grams) or less that are born before 31 weeks of gestation (A full-term pregnancy has a gestation of 38–42 weeks). The smaller a baby is at birth, the more likely that baby is to develop ROP. This disorder—which usually develops in both eyes—is one of the most common causes of visual loss in childhood and can lead to lifelong vision impairment and blindness. 
 

 ROP Stage III — Severely abnormal blood vessel growth. The abnormal blood vessels grow toward the center of the eye instead of following their normal growth pattern along the surface of the retina. Some infants who develop stage III improve with no treatment and eventually develop normal vision. However, when infants have a certain degree of Stage III and “plus disease” develops, treatment is considered. “Plus disease” means that the blood vessels of the retina have become enlarged and twisted, indicating a worsening of the disease. Treatment at this point has a good chance of preventing retinal detachment.


 With both her Doctor and I highly concerned, she went on to have 2 laser eye surgeries that would laser off the large and twisted blood vessels and potentially keep new vessels from continuing to grow. Unfortunately, the first surgery did not work so a second had to be done right before her NICU discharge. Even after the surgery was successful, we had monthly specialist appoints to ensure no new growth would occur–and those appointments were torturous. At this point she was about 5 months actual, 1 months adjusted. Can you imagine a 1 month old getting an eye exam where the doctor used a probe to keep the eye open while he used another instrument to poke and look around? It was horrible. The screaming crying that I would have to hear and not be able to do anything was just torturous. It was a monthly appointment I truly dreaded. To add to the torture, after a month or two of visits, the doctor noticed new growth, which was growing rapidly. Of course the discussion of yet another surgery was on the table, but this time it was to be an injection with a medicine, which stops the chemicals that are harming the eye, and makes the abnormal vessels disappear. This procedure is called an “intravitreal injection of an anti-VEGF medication (IVAV)”.  It seems less invasive then the other two but the medicine that was being used was still very new which meant who knows what the outcome of the procedure would be, or its side effects. As much as I was scared, I had no other choice. It was either this last attempt or my baby could possibly go blind. The answer was obvious and she was scheduled for her 3rd eye surgery within that week. Thankfully, by the grace of GOD, it was successful and it stopped the growth right in its tracks.

So far, we haven't had any known side effects from the injection surgery and Liv has pretty good vision. Being that she was diagnosed with ROP early on, it has caused other mild complications like myopia (nearsightedness) & strabismus (crossed eyes). Then again, it could be genetics because God knows I’m blind! :) Even with her vision being impaired to some degree, it always amazed me when she see's the tiniest lint or string on the floor and picks it up and hands it to me. We are hoping with patching, and her new miraflex glasses, a 4th surgery can be avoided...but only time will tell. We are set to revisit the doctor in another 8 weeks and I am crossing my fingers that we can catch a break and not have to undergo another surgery. 

 

I took these photos the morning after she first got her glasses and as you may see, she has a love hate relationship with them. More hate than love at this moment, but I’m hoping she will learn to love them. I can't help but feel overwhelmed with love and gratitude when I see these photos. We are so lucky that our 23-week miracle baby can see & explore. There were many times I wasn't sure if she would be blind or have severe vision impairment. Being able to see the world through her eyes as she explores gives me a fresh take on life. It gives me hope. It makes me appreciate life, the ups and the downs, and allows me to love so much harder.

Oh my Olivia Abi- Rae, you are my saving grace!

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Comments

  • Posted by charisse on February 03, 2015

    She is beyond beautiful! !! I’m so happy that she is here and blessed this world with her presence. Tell her I love her!

  • Posted by Tiffany Dessa on February 03, 2015

    Hi Kassie,

    Thank you so much for taking the time to stop by and read the blog and for your very kind words! At first, it was hard for us too, but now It’s just part of our daily routine. Also, appreciate you sharing your story. It gives me hope that with continued patching, we too can avoid surgery. XOXO – Tiff

  • Posted by Kassie on February 02, 2015

    I just happened to stumble upon your Instagram feed the other day and I’m so grateful I did. I’m not usually one the comment on strangers blogs but I wanted to say thank you for sharing your story. I can feel the love you have for your family. Your babies are beautiful. My son was also diagnosed with strabismus and nearsightedness at a young age. I would say that patching was harder on me than it was on him because of the stares and questions we would get. He was a champ and we were very strict about him wearing it and we were able to avoid surgery. Good luck momma. Thank again for sharing your journey with us all! Xo!
    Kassie

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