Game Face

24 Sunday Nov 2013

When no one else is around, I talk to the boys a lot. Sometimes it is nonsense. Sometimes it is what I’m doing (which could also be nonsense). Sometimes it is deeper stuff. What I hope for them. How few things in life are going to come easy for them. But how having to work for something makes it that much sweeter. How we all believe in them. And also how we love them exactly as they are.

I’ve warned them that life may not be easy. That if they want to beat the odds, and work their way out of a pretty poor prognosis, that life might be more “work” and less “play”. They will need to have their game faces on…all of the time.

I’d like to show you N’s game face:

That’s not his prettiest look, so let me add some context.

I had N on his belly for some tummy time. His arms and legs were tucked. They are able to lift and turn their heads in tummy time. I’m thrilled with that, and let them practice it on the floor, and on our chests when we have a chance. N threw in a little surprise this time though. With some grunting and struggling…he rolled over on to his back.

Rolled.

Over.

I was in disbelief. He is weak, they say. His ability to manage extending and flexing muscles is out of balance, they say. He will experience delays across the board.

Yet I had just watched him roll.

I placed him right back on is belly to determine if it was more of a fall / fluke.

He rolled over for a second time.

Mima emerged and I told her what had happened.

I placed him on his belly and for a 3rd time, and this time for another witness and with a little more effort, he rolled over for a 3rd time.

We got our cameras ready, and put him on his belly again. I could tell he was tired. It seemed he didn’t have enough strength to make it happen again, and we were content with the fact he has rolled 3 times. But he put on his game face, and made it happen one more time:

L gives him a poke to get started

Going…

And…

Over!

You can probably guess what I did next…it was L’s turn to try. He is bigger, heavier, and not as mobile as N. I wasn’t sure if he could do it…but he did it too. It was only once…but it happened.

The last time I recall anyone discussing rolling over was at our first care conference when the neurologist warned J and I that most Liss babies reach a developmental ceiling at the point where they are smiling and rolling over.

The boys hit that milestone at the ripe old age of two months / adjusted to 3 weeks. According to my notes, K didn’t even do that until he was over 4 months old.

Maybe the boys are almost done developing and we will still be celebrating the occasional roll months from now. I certainly am aware that is possible. But to me it feels like we’re at just the start of a lot of amazing things.

Game Faces on.

Two weeks down!

23 Saturday Nov 2013

Posted by Mama Laughs in Uncategorized

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Week two was surprisingly calm. We still had a couple of nursing visits, an equipment download, one long appointment, and a few visitors, but in general, we didn’t make taking care of 3 kids look nearly as hard as we had been.

We’re getting in to a routine. The bottle making and washing, baby changing, cord moving, laundry washing is all second nature now. I think it would be weird to me not to have to move cords out of the way for a diaper change now.

We’ve settled down a lot. The first few days every alarm seemed scary. We are used to the beeps, and have now grown comfortable that the boys are in fact breathing, just shallow. We sound like NICU nurses yelling “it’s fine” to let our fellow house nurses know this isn’t really an event. We also don’t panic every time one of them spits up, or makes a weird face, or grunts. 🙂

I’m flying solo on occasion. Monday and Friday I was on my own with the boys all day. We have gotten very comfortable and while not much else gets accomplished, make the day work without any glitches. I even tackled baths for both boys on my own. It took me 3 days to set up, and because I did them by the warm fireplace, I was sweating. When I finally finished, they were two months old, and I felt 10 years older. But it got done.

Staging

Clean babies!

The “big” event this week was their outpatient follow-up on Wednesday. Mima and I left around 9:15 am with the babies and all of their goodies on board. We got home around 6:30. It was a long day. BUT…it was also a good day.

Not sure who was more worn out…us or them!

I liked everyone we met. The Neonatologist, Dietician and PT will be the ones we see going forward. We didn’t spend much time talking about the future for these boys. For now we just assessed that they were eating right, growing well, and overall adjusting well to being home. We discussed future appointment plans including Opthalmology, Audiology, Neurology, and Endocrinology. They analyzed their monitor information and confirmed no serious cardiac events had occurred. We felt sure of that, but it was a relief to have that confirmed. As a result, we’re letting them be off of the monitors when we are home and just hanging out during the day. We walked away with some additional PT ideas to help the boys with a few things. (I’ll post a separate Developmental post another time). Perhaps the most useful takeaway was learning that the boys tummy issues are likely being caused by their medications. We’ve had some pretty fussy evenings and nights, particularly for Nolan. Turns out their seizure medications (which were weight adjusted / increased as we left the hospital) can cause constipation and gas. Isn’t it funny that with all that we have been / will be faced with, right now our biggest worry for the boys on a daily basis involves a diaper? Isn’t that always true of babies? It all comes down to…well you know.

Week 3 we will have one nurse visit, but otherwise just family time. We’re having family in for two different Thanksgiving dinners, so look for some photos after the dust has settled!

And here are pics of some of this week’s cuddlers: