Or Say Whatever
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Kayden is growing and doing well in general terms. He is now 8 months actual and 4 months adjusted.
We did a blood test for his supplement levels. He is supposed to be on iron, vitamin A and vitamin D. We haven’t been doing the iron for a while because he instantly power chucks it. And then has episodes of vomiting for 24 hrs or so following. He losses more good than it’s worth, or so we hope. The vitamin A is a odd one, microprems don’t usually get it supplemented and the paediatricians can’t actually tell us the detriment for having low vitamin A because the research is lacking. So it’s supplemented as a precaution but this as well has been tricky to give him.
With Sylvie we had no issues with the supplements because she took a bottle like a champion. Kayden of out the blue around 2 months adjusted started to gag violently on the bottle. We tried everything from different bottles, teats, positions, temperatures, people, times of day but it’s a no go. We also saw an Osteopath, that was for his torticollis, but I was hopeful it was going to help with the bottle adversion too. She did amazing getting his neck into full range along with some tips from a physio and lots of tummy time.
Taking no bottles meant my pumped supply was getting out of control. It’s been a sad experience for me to having put so much effort and time into my pumping and not being able to use it for Kayden. Thankfully, I have been able to donate, it’s makes me feel better to know it’s going to good use. The waste would just break my heart. Whoever said don’t cry over spilt milk didn’t pump breastmilk.
Anyways two weeks on from the blood test and we’ve haven’t heard a follow up. So I chased it and have found that his levels are all within normal range, still waiting for them to send us the results. I have been finding the letters in the mail are coming late. I got one the other day with information that was near a month old.
One said that Kayden is due a review of his ROP (retinopathy of prematurity - eyes) which will be booked within a months time. Our surgery is booked in less than a week so ya let’s hope that’s not an error.
He is going to be getting an angiogram which will assess the need for laser eye and will be done in the same appointment. It’s done under general anaesthetic and he will be intubated. The thought of him getting intubated again makes me want to cry, even just writing this thinking about it. We fought so hard to get him off respiratory support, I don’t think I can bare to see him back on and at the highest level. I’m so nervous about it, I keep picturing him lying there floppy all hooked up again. I don’t even know what I’ll be seeing or if I’ll just be in a waiting room but I’ll likely be crying at some point.
Onto some good news, Kayden sleeps through the night 10-12 hours and has been for a while. Most mornings he’s just chillin in his bed, smiling and waiting to be picked up. He is just over 10x his birth weight! This is big milestone and he is zooming through clothes sizes.
I still get lots of comments “oh he’s so cute/small/new” insert whatever reference to size there. Oh boy, they rub me the wrong way. They’re coming from both strangers and people that know his story. So to get it off my chest cause I need to purge this anger. Hopefully you know by now that my blog is my mental health support because the services were out of reach despite saying in hospital “I need access to mental health services”. There’s a whole story in itself there.
Anyways, Yes Kayden is small for his actual and adjusted age. He didn’t not chill in comfy womb getting free EVERYTHING from a healthy placenta. He spent the first weeks of his life fighting to breathe, fighting to live and kicking some serious medical butt. He didn’t grow during this time because all his energy at 565grams went into staying alive. He has done some hard time in hospital, stuff that would put adults on their ass. Like I said it rubs me the wrong way.
I’m going to put another thing out there, and again it’s my blog and my experience. But one of my favorite messages of this whole experience was actually one I didn’t even read. It was from someone I knew in my childhood, she had wrote something and then deleted it. And good ol’ Facebook with its love to stir the pot, send me a message saying I got a deleted message. I loved it because it showed that it isn’t just me that has no idea what to say to people but people also have trouble finding what right to say to me. My options seem to be tell the truth and shock people and overshare. Or be less forthcoming and it feels like sweeping the experience under the rug and lying. So I guess that best things to say sometimes is just “I don’t know what to say”. Or say whatever like I did above in my vent against small baby comments.
