Let me start off by saying, I'm not going to cover all of the technical 'stuff'. This is simply a 'What to expect' from a parent's point of view.
Being born early comes with a lot of complications and set-backs.. 'R.O.P' being one of them. When I was first flown to Penrith, I met Maria, one of the beautiful Neonatologists ('Baby Doctor') at Nepean Hospital. I'd only been at Nepean for about an hour when Maria came into my room holding a booklet, 'Birth Before 32 Weeks - What to expect when your baby is born prematurely". She explained that, should I have my baby that night, he would have a rough start, but they'd bust their butts to do everything they could for him. Inside the booklet, it explained that, at 27 weeks, Carter would have to come out fighting. I was horrified. There was a section that explained the different complications; breathing, feeding, heart, brain, infection.. and eyes. It explained that the back of the eye (the 'retina') is still developing for premature babies.
When these tiny babies are born, their need for a higher percentage of oxygen is much greater than a baby born term and healthy.
An excess supply of oxygen (or 'hyperoxia') can make the blood vessels grow abnormally throughout the retina. Babies who develop serious problems with retinopathy (Stage I & Stage II are generally self-correcting), may need laser treatment to one or both of their eyes.
Babies born before 32 weeks gestation and/or, with a birth weight below 1500g are at a higher risk of developing R.O.P. - (Take a look at The Royal Children's Hospital Melbourne's website for more information by clicking here!) Now, that's where my understanding of R.O.P ends. Carter, along with all the other premie babies in the unit, had a screening test for R.O.P every fortnight. The screening test consists of taking a bunch of images with a retinal imaging camera which focuses on the back of your baby's eye where all the 'good stuff' is. It's where our eyes take what we see and tell our brain all about it. Carter's first test was horrible. At least, I thought it was. I wasn't to know that it would just get harder to watch as he got older and became more aware. For Carter's second test, John sat with him. He came back to our room declaring that it was one of the hardest things he'd ever had to do. I reminded him that we still had MONTHS of this.. and Carter was the one with the shit part of the deal.
At two-months-old, I stayed with Carter for his third test.
I decided that I was going to photograph it from start to finish, not just to be able to show him one day, but also to show others what these tiny little fighters go through. Tracie and Jane are a couple of my favourite people. Just having them there made the experience so much better.
Carter had already had some eye-drops earlier, to dilate his pupils.
Right before the test, he's given more eye-drops which numb his eyes. Whilst the babies usually become pretty distressed, they shouldn't be in any pain. You can see the lovely Nik holding Carter in the background of the above photo. Your baby will be held securely by another nurse and he or she will give your baby a bit of Sucrose to help ease them a little. Sucrose is just a sweet-tasting liquid, it isn't a medication.. I suppose it's the equivalent of us having some chocolate on a bad day.
So, this is the horrible part. It reminds me of a scene out of a Saw movie or something. This little device will be put on your bubby's eye to hold it open. It's horrible. Horrible horrible horrible. But you have to remember, it's probably uncomfortable for them, but it isn't hurting them. If you're worried, have a chat to the ophthalmologist or nurse looking after your baby. I can't stress to you how important it was for us to be well informed on the things Carter had to endure. It allowed us to better support him and helped us to feel less anxious.
Some gel will be put on your baby's eye..
At this point, Carter was already screaming his little lungs out. Nik, his lovely nurse, had already given him some sucrose and she was holding his dummy in his mouth to help soothe him. He'd stop to suck his dummy, in-between screams, and notice this sweet taste in his mouth which helped to settle him for a second, before he remembered he was half-way through screaming the unit down.
The following image shows you the specially designed retinal camera which is used during the screening test. Yes, the camera does make contact with the eye. Yes, it looks extremely uncomfortable.
Yes, it's gross and you may cringe a little.. or a lot.
..but it's over in SECONDS!
You will see the images on the screen immediately. It's amazing to watch! I definitely encourage you to take a look!
They will take a bunch of images and, whilst they will have an idea of how things are looking straight away, the images are sent to a specialist ophthalmologist to declare whether or not your baby is in the clear.
From the scary little horror movie device to the end, it takes a couple of minutes before it's all over.
They'll give your baby's eyes a little wipe over the eye-lid to clear out most of the gel on their face, and you'll notice the 'scarecrow' looking eyes and a load of redness.
Don't worry, that will go away over the next few hours.
All done!
We always tried to tee up a bit of a cuddle after Carter's screening test, just to help comfort him. The first couple of times, we weren't able to. The test took a lot out of him, and it was a little touch-and-go there for a few weeks, but this time Carter was on high-flow and doing much better, so I was able to give him a cuddle before getting him off to sleep for the morning.
Being a NICU parent is rough! It's an experience that we wouldn't wish on anyone! But being prepared and knowing what to expect, it certainly makes things much less scary.
If you're feeling anxious about any part of your NICU journey, I encourage you to speak to the nursing staff or your babies' Neonatologist. They will be an amazing lifeline for you during your time there!
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