More than an Eyeball
NICU 32
Day 101 - 106
Gestation 37 - 38 weeks
Kayden is down to 2 Litres high flow! You can barely hear it now, if you put your hand under the tube it feels like warm breathe, theres not much flow at all. It will come off in a day or two.
His feeds has increased to every 2.5 hours and milk is up to 53ml. He is still sleepy on the breast, only scoring 1 and 2 s out of 6. I will keep putting him on though, and positively associate breast with an NG tube feed.
The next morning, I come in and Kayden must have heard all the chatter. He tried to take the high flow off himself. He manage to get the NG tube out, the left sticker of high flow is shifted up and is barely hanging on. The right side is ripped off and he has made a mess of his cheeks. He is the kid that crashes his bike the morning before picture day. Thankfully, my timing was good and we decided to finish it off and clean him up.
I’m so glad I didn’t miss it, coming off the high flow is a big deal. He has been on some form of respiratory support for 104 days. We’ve gone from the ventilator to NIPPV, bubble CPAP and then high flow. He has always had his cheeks covered and even his head. I’m so excited just to stare at and kiss his sweet face. Turns out his cheeks are chubbier than I expected.
He is already showing more energy and alertness. He did a few attempts on the breast, getting much better. He does however get too excited and forget to breathe. He goes suck suck suck swallow suck suck suck oh shittttt…. Pufffffffed need to sit up to breathe. I need to learn to read him and pull him off before he overwhelms himself.
We did a mini photoshoot thanks to Courtney. I have to say having friends in here that are going through it too are an absolute saviour. I am so grateful for Courtney and Jade. If you’re in a NICU or SCBU, please reach out to others parents around you, I promise it will better your journey.
On Tuesday we are due the eye test. I’m sure I have said it before, they are aweful. We’ve had so many I have lost count and each time it feel like nothing changes. It is starting to feel like cruelty.
I called in this morning from home and said I wanted to discuss the test, please hold off on the eye drops.
When I got in everyone was in a meeting and there was no one available to discuss it with but the eye team was on their way up. The drops are two rounds and take 30 minutes to work so there is a time pressure to make this call. I want to make an informed choice.
A specialty nurse tries, she asked me what my concerns are. As I begin to explain she cuts me off saying they do it cause they do it. That’s not good enough for me. The paediatrician is unavailable so a nurse calls the on call paed. She is not well versed in ophthalmology and says the same they do it cause they are told to do it. I asked based on what data? There is no reliable data, there are no significant trends because each baby is different.
Okay well then let’s base this off my baby, we have done ten or so of these resulting in minor changes. He just came off respiratory support and I don’t want to stress him unnecessarily. What is the likelihood that missing one week will make an impact? Can the eyes change for the worse that quickly? And would they considering his history?
No real answers, we do it cause we do it. Cause if we don’t know what it’s like without the pictures. But do you need a picture every week when it’s torturous and not changing?
I’m so stuck, Im not getting answers based on medical data. I call Lee for help. It’s stressing me out and I’m getting nowhere with time pressure on my back. They only come on a Tuesday so it’s not like we can push a few days, it’s today or next week. Lee makes a clear line, if his last results are trending positive we will not test this week.
Good, I agree. The eye test nurse sits down with me at the computer and pulls up Kaydens result history. She really took the time here to explain and go over it. This is what I needed this whole morning, I’m so grateful she took the time, she’s not an ophthalmologist, she’s going out of her way to help. Based on Kayden results, his eyes have not significantly changed since we started testing, there is a slight positive trend. We call it, no test and I thanked her for her help.
He is not just an eyeball, he is a whole baby and his journey is very special. I’m glad we made a choice based on him and not to do it cause it’s what they do.
A Mum in the unit said to me later that she admired my strength. They were really pushing me to do this aweful test and I stood my ground for what I believed to be best for my baby. I demanded data and reasoning and had to fight for it. It took all morning to get real answers.
He is my baby and I am his voice.