Eye Update!

Our Latest Adventures, Our Patching Stories, Patching

Hi friends! It’s been a while since we talked about Olivia’s eye. It’s crazy to think that she was diagnosed almost 2 years ago (what!?) with Persistent Fetal Vasculature! When we received that diagnosis, here is what we were told:

  • Olivia is blind in her right eye
  • She can only see some light in her right eye – if anything
  • Because of her diagnosis, this is unlikely to change
  • BUT in an effort to gain some vision, she needs to patch daily for at least 4 hours a day

I remember feeling so defeated thinking she was unable to use her Nemo eye! But we came to terms with our new normal and continued on. Olivia is a rock star but I will be honest, we have NEVER hit 4 hours of patching in one day. I really don’t know how some parents do it. I have tried everything to get her to stay focused and tolerate the patch but so far, our best patch time is 3 hours a day – and I’ll take that! (and so much respect to those parents that can get their child to patch for half their waking hours – that’s the goal!) With the patch on, Olivia has always been able to maneuver her way around so we had some suspicions that maybe blind in her Nemo might have been a stretch…

Oh man, I’ve lost my point here! Back to our eye update 🙂 So after that catch up, you know we went into this appointment with these 4 ‘facts’ in our minds. Our expectations are always pretty low but we hope for the best. My husband had to work so my wonderful sister – otherwise known as YaYa – stepped in to come along for this appointment.

We headed to Olivia’s eye doctor/lens specialist early in the morning. One silver lining to Olivia growing up in these offices is that everyone knows and adores her. We walk in and their first response is “oh my goodness, you’ve gotten so big”. They knew her when she was just born and they’ve watched her grow into this independent little girl. Crazy to think how far she has come.

At previous appointments – being that Olivia was so young – the only way they would measure how much vision she has is with some special instruments. But this time, we were surprised with pictures! Dr. Mcleary handed Olivia a piece of paper with black and white pictures on them. Olivia was then told to point to the picture she could see on the screen. She practiced with both eyes and then the doctor covered her dominant eye, forcing her to use her Nemo to see. To the doctors’ surprise, she could do it. Mind you, the images were big but that doesn’t really matter! The fact is, she could see that piece of cake enough to identify it on the page in front of her! Even with my suspicions, I never dreamed she would be able to see an image that far away and be able to identify it. She was able to do a few rounds on the eye test before become completely agitated and ready to go play with the stickers she earned.

The doctor recored the data and spun her chair around. The air around us got so still. Then she said,

Your daughter is not blind.

Yup, you heard that right. She is not blind. She has terrible vision. Her prescription is so high in the double digits I didn’t even know they could go that high – but she is NOT blind. I cried right then and there. I couldn’t contain my excitement.

This means, the patching worked. It means the surgery was the right choice. It means, so far, in a field filled with so many unknowns, we are doing okay.

The doctor was sure to remind me that due to her condition, there is a limit to how much vision she is likely to gain. Since her retina was detached and was never able to completely finish developing her eye, she will always have a lot of trouble. But she’s getting better. She’s a fighter (usually fighting me to take the patch off but who’s counting) and we are going to keep fighting to get as much vision back in her Nemo eye as possible!

When Olivia received this diagnosis 2 years ago, we began going into these appointment with the idea to expect the worst but hope for the best. Even though I could see her getting around a little better with the patch on, and watching the iPad – no matter how close – I wouldn’t allow myself to believe she was truly gaining vision in her eye. So beyond ecstatic to have been wrong this time.

So, in this new year, we are going to just keep patching – hoping to increase our time per day! The doctor is having us wait on her next surgery since her eye is looking good and the ultimate goal is to get her a little bit older and bigger before they go back in. We left the appointment over the moon and headed over to Dee’s One Smart Cookie to get our brave girl an allergen-free cake pop.

Thanks for reading and stay tuned for more fun ways to get this girl to keep her patch on!!

New Patching Routine

Patching

I have officially decided that all of the moms before me were right! As soon as you figure out what works for your baby, it’s going to change. This is especially true for those other patching parents! I thought that I had our patching routine down in the mornings! Our mornings would start bright and early. I would go get Olivia from her crib, bright eyed and bushy tailed at 5am. We would get dressed, sing our patch song:

“it’s time to put our cute patch on, don’t worry it wont be on for long, its going to make our eye so strong!”

and place the eye patch on my reluctant little Olivia. Then we would start the 3-hour timer and fill our morning with all her toys, Moana, snacks and a few nap breaks. Our 3-hour patching time would turn into 5 due to a nice long 2-hour nap but by noon we were almost always finished with the patch. I count to three out loud and pull the patch off. As her eye refocuses on the world around her, the baby who was so quiet all morning and solely focused on using that ‘Nemo’ eye, all of a sudden is a bundle of life, giggles and most recently, some pretty impressive gymnastic moves – like momma like daughter I guess ☺. But of course, as soon as I got comfortable with this new normal, Olivia went through a wonderful growth spurt. Her mind has doubled in this last month and I am convinced our little warrior just became aware of what she can’t see.

Instead of spending our morning focused on toys and movies I am constantly combatting her little ninja hand from reaching up and ripping the patch off! Her little fingers are the perfect size to get under the sticky part of the patch right by her nose. With every removal attempt, she gets a little more of the sticky patch off until I look away for approximately 3 seconds – giving her enough time to put all of her might behind those two little fingers as she rips off the patch.

Now, rather than doing a long chunk of patching, our routine has changed to completing at least 90 minutes of patching as soon as she wakes up and then another 90 minutes later in the day. Today was the first day of this split of patching and Olivia was NOT a fan of double patch time throughout her day. We were able to get the full 90 minutes in the morning but only 40 minutes in the afternoon. Rather than fretting over the time not patched, I celebrate the time we did get in. I am so proud of Olivia and am in awe of her strength every single day. Despite how upset she gets when she cant see Moana dance across the screen or has to hold the books super close to her face to see the pictures, she still plays a mean game of peek a boo and rolls around with the kitty. So, you are all on this journey with me as I figure out what will work next for this strong willed patcher. She smiles the biggest, brightest smile even with her vision occluded and that reminds me that we are doing the right thing in pushing our princess and of course…to just keep patching.

Today was hard.

Patching

Today was HARD. As a result of Olivia’s PFV, she developed a cataract in her Nemo eye. In order to give her the best chance to regain some of her vision, the lens in her eye was surgically removed at just 3 months old. Since her lens was removed, Olivia must wear an artificial lens in her Nemo every day in order to let the most light in, protect her eye and give her eye the most stimulation. We have to take the lens out once every week, let her eye breath over night and then put it back in the next morning. When we first started taking the lens in and out of her eye, it was a piece of cake! Sure, she would squirm a bit – no one wants someone poking them in the eye! But we could get the lens in and out with very few tears and within a 5 minute period.

Those days..are OVER.

Now, at 9 months, Olivia has caught on. She doesn’t want us taking the lens out! She hates us putting our fingers by her eye. We have had to resort to holding down our beautiful, sweet daughter and prying her eye open in order to get the lens out. We know that taking the little piece of medical plastic out of her eye is necessary. We know that it is what is best for her. But holding her arms and legs down, and looking at that little face stare at us and just cry is excruciating. Dan and I have learned that she can smell fear and frustration. She knows that after our 17th attempt at getting the lens out we are so frustrated ,which in turn, makes her frustrated and even more upset. She is one strong willed little warrior and does whatever she can to get out of the situation she is in.

Today, we had to hold her down for 10 whole minutes. We had to watch her cry until she tired out enough that we could get her eye open just a little bit more and pull that lens out. We both walked out of the room and took turns trading off with Olivia to just cry and let it out. It is one of the hardest parts about our new normal. But we are know this contact lens is helping her in more ways than we can count and our little rock star keeps that thing in all week without rubbing at it.

Every time we work with the lens we get a little bit better at it. We know to keep that smile plastered on our faces no matter how mad we get because she knows when we arE not having fun anymore. We have learned to keep BeeBoo on and by her face to keep her even a little distracted. And we have learned that sometimes, the Puppy Pals theme song can keep her attention just long enough for us to swoop in, grab that contact and get out.

But some days. Some days are just HARD.