u/SheElfXantusia

My former 28-weeker, now 6 weeks adjusted, just freaked me out. 😅 I never noticed his soft spot before and I just realised it's enormous! My daughter's was so small compared to his. I know the doctor's checked it daily while he was in the hospital and nobody was ever concerned, but I'm concerned now. 😅 Is it meant to be bigger than a normal baby's? It reaches the top of his forehead and is as wide as the top of his head.

I hope this feels as encouraging to someone else as it feels good to me. It's a huge relief every time we find out we can do normal things. :)

I tried yesterday with an elastic wrap but the IV pump kept reporting a blockage. Today, I was more mindful about the IV line and used my woven wrap that I'm more comfortable using.

He also has an ileostomy and so far it feels good, no leakage but I will let you know later I guess. XD

I'm creating a bag that needs to be as thermo-isolating as possible (for an IV bag). I'm considering a thic fabric - foil - thick fabric combo, but I'm not sure the foil can be effective if sandwiched between layers of fabric. I might add another layer of foil on the inside, but that will be very clumsy to use.

It is finally over! 🥹 I'm so happy and so, so tired! I haven't been posting many updates lately because I was drained. For 15 days, I was hospitalised alongside Atlas in order to learn everything. I learned everything in a couple of days (I already had some medical and technical background, so the IV pump was child's play for me), but then the gastroenterologist decided to go against all doctors who wanted to release us and she decides to keep us for no freaking reason for another week (I mean it, no reason but she's the most senior doctor so they couldn't go against her). The last weekend, there was a kid with laryngitis in the room right next to us, which was scary and unnecessarily risky. But enough yapping.

Atlas, formerly 960g 28w+5 is now 3230g and 5 weeks corrected. Crazy. He's still small but he's healthy and gaining. And he's amazing! You guys, after all that he's been through, he's brilliant and I'm constantly in awe! When we brought him home, we put him on a mat with some toys above him - he never had that before - and he is able to punch the toys to make noise like he did that every day, like it's nothing to him! And two days ago, I swear I saw his first social smile! He smiled when he woke up and saw and heard me! My daughter did that at 8 weeks, so he'd be a little ahead and he has yet to repeat it but I'm sure it was that! (Sorry for yelling, I'm excited. 😅)

What he's been through, in this order: lung infection, DART, issues weaning off breath support (ended up being irrelevant), NEC, 15 cm of his small intestine remover, ileostomy, revision to take a few more cm and fix the stoma that fell apart, sepsis, high output stoma, failure to thrive, recurrent sepsis, PICC line placed, still failure to thrive and high output stoma, placed on almost full parental nutrition and only 12 ml of milk per feed PO.

What we're left with: ileostomy, PICC line, IV nutrients at home, a teeny tiny but healthy and strong baby.

What I learned in the past 4 months: People have no idea how hard this crap is and I'm weaker than they think and if someone tells me I'm strong I will punch them. 😅 I also learned not to keep my head down and be quiet when doctors are being ignorant. I fight for my kids. I love them both so much, they are my whole world.

If anyone has any questions, I will gladly answer, especially if you're in a similar situation and are wondering what life could be like.

Now I have a few more bags of medical equipment left to unpack. 🙃 Thank you everyone for supporting me through this! 💕

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Hi, we're going home with an ileostomy and on parental nutrition (21 hours a day). All of the necessary supplies will be provided by the hospital, naturally, but is there anything extra I should be looking for?

So far, I learned that you want to have a big plastic box (two in my case) for all the supplies you'll be getting a shipment of every month, for easy transport. I see other moms and partners of patients lugging those boxes around all the time, so I got myself a pair with handles for easy carrying.

I might be provided with a backpack for the IV pump, but honestly, I was told the bag that the pump manufacturer sells is crap, so I'd like to look into an alternative.

I heard about car seat inserts(?) that would make traveling with a stoma bag easier or even safer, but I can't find any, even just to see what it looks like. Anyone knows?

Anything else?