100 days
NICU 31
Day 93 - 100
Gestation 36-37 weeks
Kayden is due to get his 3 month vaccines today. It’s pretty busy in the unit and I said we can do them tomorrow then. I want them done in the morning so I can be there to comfort and watch him all day.
We had a nice quiet day with skin on skin and a bath. I managed the bath myself, it was a bit tricky with the high flow but the nurses were flat out. I was at my favourite part of tucking him in for the night and then the nurse shows up. I don’t need the help anymore, we’ve past the hard part and she starts to tuck him in. I was super annoyed but for some reason lost my voice. I couldn’t find the right words. She was taking over when I didn’t need any help and was missing when I did need help.
Next morning and I’m mentally prepped for vaccines. They’re not ready. We delayed 24 hours and they’re not ready.
I have pumped, peed, nappy changed him and were set up skin on skin. They’re not ready.
It’s 11am by time they sort it out and we get one of the two shots. He screams as they do the shot and goes tachycardic. Wait one shot, Huh? Apparently the pharmacy sent the wrong second shot and they had to call down to correct it. Why did no one offer me to wait for both shots to be done together. These things stress him out, they should be done once, smoothly. We waited an hour to do the second shot and I have to resettle him again. I don’t understand why these things get jumbled. They have so many babies all year every year. Something like vaccines should be a picnic to organise.
Anyways, he seems to handle it well and I’m off for the night.
In the morning he has a cluster of Brady’s and desats so they turned his high flow back up to 4 litres. Damn, I hate back stepping. It’s so discouraging.
And then sometimes a downgrade is actually progress. Kayden got a big boy cot, it has no fancy functions, literally a plastic box. It means he doesn’t need any of the bells and whistles on his bed anymore.
The next day was pretty calm, Kayden did a beautiful breastfeed, they seem few and far between. I’m trying to be patient about it. Exclusive pumping for 97 days sucks.
He gained 191 grams, his biggest gain to date. He is now 2.721kg, which is bigger than Sylvie when she came home; 2.53kg.
Tomorrow we will go down to 3 litres high flow and will move back to the bolus feeds, bye bye compressor! Every piece of equipment and wire that leaves our bedside is such a relief.
Day 100! My blog is a few days behind so I tend to share these big milestones on my Facebook and Instagram. Here is what I wrote for 100 days.
❤️ 👣 100 days 👣 ❤️
I didn’t make it very far into the hospital without tears today. As I was checking in at reception the man next to me was carrying a baby car seat capsule. The receptionist said to him “oh how nice to be headed home”, he barely responded to her. He gave her a shrug and an ugh. And it just hurt my feelings to watch, he wasn’t even acknowledging her.
She said the one thing I want the most and he said ugh.
I had a few tears by the elevator. I got up to SCBU and the nurses have put up a special banner, brought us chocolate cake and lots of other treats. Its a beautiful bittersweet display. It has all the vibe of a celebration but it’s not really a celebration because it’s not where we want to be.
What do you call a milestone you never wanted to achieve?
No one has mentioned going home, we don’t know when it will be. It’s hard to hear people say soon, when we know it isnt.
It’s been a tricky time finding the right words. As much as people don’t know what to say to me, I don’t know what to say to them.
I don’t want to make people sad or worried and I don’t how much information is too much. I also don’t want to hide how hard it has been.
100 days of the most heartbreaking, emotional and physically difficult journey.
❤️