Brain Bleeds

This is Six Months!

The boys are 6 months old today! Wow, how time flies. They’re really 3 months corrected age, but 6 months actual today. It feels like it’s all been a blur and also the longest 6 months of my life, if that makes sense?

Our biggest issues continue to be general development (due to their brain bleeds and damage, Jaxon’s muscle tone and risk factors for CP and other issues) and feeding issues (G-tubes, trying bottles etc). Axel has some kidney stuff going on and Jaxon has some heart stuff.

They’ve met some milestones and others, not yet… No one is super concerned yet, but I can tell some challenges lie ahead. We knew that there would be challenges, but it doesn’t make it any easier as the days unfold. But still, most days lately have been pretty positive and we try to keep up good spirits. I tell myself daily the boys have their own schedules for doing things and not to pay attention to “regular milestones”, even for their corrected age. (Easier said than done sometimes.)

We are very much still living in “medical land” as we calculate daily fluid intakes based on their TFIs, manage their tubes, medications, make phone calls to book ultrasounds and tests and appointments (still 3-4x a week for various appointments), and so much more… It’s a LOT. But, we’re really starting to get to know the boys’ care teams which is a big deal (to me anyway).

After spending months being seen almost daily by the same doctors and nurses, you develop relationships with them and learn to trust them with your children’s lives. It’s huge. I had that for a few months with my (amazing) MFM during my pregnancy, then with the NICU doctors and nurses, and now we’re settling in with their pediatric team. I really like the boys’ pediatrician who we see weekly, as well as their physio, OT, dietitian and psychologist team (who all work together and we see biweekly), their neurosurgeon is THE BEST (which I’ve mentioned before). We have some really good people on our side and I’m so grateful for that.

But, living in medical land comes with drawbacks too.

I have to consciously remind myself to spend enjoyable time with my twins. That sounds bad, doesn’t it? What I mean by that is I have a laser focus on feeding them on their assigned schedule (from the docs), changing them, cleaning up puke and changing clothes, giving meds on time, checking head circumference, “charting” their feeds, meds, diapers and vitals, and all those tasks that need doing. I am so focused on these things, checking things off a list, that I often don’t even think of doing anything “fun.” Yes, I play with them. We do tummy time and play with toys and make funny faces. But… it’s always about their development. They’re at risk for being so delayed and behind, and in some respects they already are- Jaxon especially.

But what else could I be doing? It just occurred to me I could play some music and they might like that.

So much of motherhood still seems foreign to me, since I’ve missed so much of the normal stuff already. Without my schedule and safe sleep rules and doctor’s orders, I find just a big black pit of, “Now what am I supposed to do?” And feeling frustrated at the end of the day when it feels like I’ve “done nothing all day,” but what that really means is that I didn’t do anything to feel like an actual mother, only a caretaker or physical therapist.

What is “normal” motherhood like? I wonder this daily, knowing I’ll never have an answer. I try not to dwell on it.

I find myself thinking more and more of my pregnancy and the NICU. Instead of fading, these memories are intensifying. I know there’s probably some sort of anxiety disorder there, but how could there not be. Just trying to take it day by day and not get too upset over the memories.

The path ahead is still very uncertain and a lot of practical and impractical questions weigh on my mind. We need to move in a few years. Should we buy a rancher in case one of both of them can’t walk? How will we afford physio and all their therapies? (Right now it’s covered but it won’t be in the future.)

I take a deep breath and remind myself to enjoy the moment.

As scary as the future is and as “medical” as this season is right now, there is still a lot of GOOD in every single day. ❤️Happy six months, my miracle boys!

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