CP, ROP, G Tubes and More (Oh My!) - NICU Progress Update
Today is 100 days in the NICU for the boys and they are now 41w 5d gestational age. Where has the time gone?
Soon I’ll have to go back and write more about their journey from the beginning. It’s wonderful we no longer have to worry about life or death. But there’s still a lot to worry about for the future in a different way. Here’s an update on where we are now.
You see the photos I post of the boys on social media. You see them gaining weight and looking good. You see their big bright eyes and funny expressions. You see the surface.
You don’t see the hard days. The days we were told they weren’t sure the boys would make it through the night or the next few days. Or when we were asked if we wanted to switch to palliative care. The surgery days – there were more than we shared publicly. The nights the boys cry endlessly in a stark white hospital room instead of in a fun nursery at home.
You see fighters because that’s what I want to show you.
Because they are fighters. But they are also not, and are never going to be, healthy little “normal” babies.
Why They Can’t Eat Well
They both may be going for surgery soon for permanent feeding tubes (“G tubes”) as they cannot eat from a bottle consistently.
A G tube is a feeding tube that goes directly into the stomach through the abdomen. Like any surgery or medical device, it carries risks like infection or leakage but it’s a fairly routine procedure.
They had me give up breastfeeding long ago, though I still pump. They will never be able to breastfeed which upset me a lot. I then thought, “Ok, bottles, fine, at least they still get my milk.”
But bottles aren’t working out either, so far.
It’s because of their brain damage. They can’t coordinate their actions well enough to eat, and they’ve developed an aversion to eating from trying so hard. Also because they puke after each bottle so they may be associating bottles with puking and discomfort now.
And because frankly some of the nurses rush to shove a pacifier in their mouths when they cry, which could be worsening their aversion to having things shoved in their mouths.
It was only a 20% chance for each of them to have had such a severe brain bleed and damage. I find myself looking at other 27 weeker babies who don’t have these issues and getting so jealous.
Why do our boys have to struggle so much?
It’s just plain old not fair and I hate that our boys have to endure this. I know everyone’s preemie journey is different and many other babies struggle much more and much less than these guys, and that there is no comparison between journeys.
Each NICU journey is that mother’s worst nightmare, no matter how “good” or “bad” it seems on the surface.
But still. Why do these boys have to fight SO hard? Like. Fuck.
The G tube surgery will likely be in 2-3 weeks unless they magically start taking all their bottles (without puking).
At the same time they may have their laser surgery for the ROP eye disease. (They have been followed closely for timing the surgery since the Avastin injections a few weeks ago. I’ll write more about this another time, ROP is actually fascinating.)
This is because both procedures require general anaesthesia so to minimize stress on the boys, they can do both in one shot.
The G tube is actually a good thing because it means we can take them home sooner.
It will be a lot of work to take care of and we still have to try a bottle first each time. If they don’t take it, we will feed via tube.
This is because we still want them to learn to eat but because of their medical states, they need to keep gaining weight well and receive adequate nutrition. Especially for brain growth!
So the tube allows that to happen at home. This is also important because now that they’re past term, they need mental stimulation and developmental exercises (plus physio) to help them develop and meet milestones.
A hospital setting is not ideal for this as they spend all their time in their cribs or 1ft away from them, tethered by cords. That’s no quality of life for a baby who needs to see new things to grow and develop.
So it’s basically better for them to undergo surgery and still be partially tube-fed at home than it is to continue being hospitalized for weeks or months learning to eat and missing out on important development things like a warm and loving family environment, new sights and sounds, toys that aren’t just plastic, etc.
In other words, being a kid.
Once I understood that the tube is a good thing that allows all this wonderful development stuff to happen, I am not as scared of it anymore. It’s still surgery and scary, and means only we can look after our babies, but it helps them as a tool to grow and (ironically) bring more normalcy to their lives.
Jaxon’s Potential Cerebral Palsy
In addition to that, we found out Jaxon has early signs of cerebral palsy, known as hypertonia (increased muscle tone). Not exactly surprising due to his severity of brain bleed (the highest – bilateral grade 4), but still entirely upsetting and heartbreaking to me.
When we finally do go home, it won’t be happily ever after.
We won’t be able to simply “put all this behind us” and move on with life.
Every day will be spent wondering, “Will they, Jaxon especially, ever walk? Eat on their own? Be able to run? Attend school? Be able to read or write or play with toys? Talk?”
Cerebral palsy is a spectrum ranging from mild, which could be just having a bit of a limp or some muscle weakness, to severe which could mean being wheelchair-bound and unable to move any part of his body. I fear that so much right now.
No one can predict the future for him, but we will be finding out more from physio next week on how to help them both develop well.
Not that I wouldn’t love Jaxon if he ended up wheelchair-bound. To me he’s perfect and I love both my boys so much. But no parent ever wants their child to have a disability or to suffer, of course. I am sad that it’s a possibility for him.
My NICU Schedule
I also don’t think people understand how hard this is physically to have twins in the NICU.
They don’t just take a bottle like a normal baby and happily eat away. It’s a process that takes about 45 minutes to an hour and includes them arching and thrashing around and screaming their faces off most of the time, to maybe finish half of it by mouth (after having their special Dr Browns bottles leak all over me and them of course).
Then I have to hold them upright for 20 minutes to help with their reflux, then lay them back in their cribs to hook up the rest of their milk to go in via feeding tube.
Then I have to go pump for 30 minutes to make more milk. Then wash their bottles and sanitize them, and maybe go to the bathroom or take a sip of water. That whole process takes roughly 2 hours and then they wake up again 30 minutes to 1 hour later to eat again.
And that’s only for one twin – a nurse helps me by feeding the other at the same time (they are not on a schedule anymore but seem to wake up at the same time still). Of course I won’t have a nurse at home!
That repeats around the clock 24/7. I don’t even have time to just cuddle or hold them or hardly fit in a bath for them or the physio exercises we need to do.
Of course there’s also many diaper changes throughout the day and NICU things like lead changes, temperature probes, interruptions, etc.
I’ve grown to seriously doubt I can take care of the twins when they come home because of their complex needs.
I’m hoping things are different when we’re home, and a bit easier.
And people say they can help and all that, sorry but no… It’s not just offer a baby a bottle and hold them quietly as they drink it. It’s an hour long fight and pukefest and no one else will be able to feed them via G tube anyway, so it’s just going to be me (and my husband for a few weeks but he will have to go back to work eventually).
The only reason I have time to write these posts is while I’m pumping and the twins scream in the background (the cord does not reach to their cribs for me to be able to reach them and calm them down).
I am lucky to have such a strong, supportive and loving husband by my side through this but it’s still a lot to deal with. And it will never stop.
Looking to The Future
Chris has been working 3 days a week to be here more with the boys. We perform most of their care and are expected to be here at least 12-14 hours a day (and often more).
He is now taking a leave from work to be here with me full-time. We hope to give the boys the best shot at successful outcomes by having the time to spend with each of them and work on their developmental exercises.
The practical, financial and emotional pressure to help them is high but will be worth it if it helps them even a little bit to reach their maximum potential.
I would never forgive myself if we didn’t try. Money be damned.
I love our boys though my heart breaks for their struggles. And along the way, it hurts for me too. For the life we dreamed of and the things we imagined doing, and now those dreams are on pause as we wonder what the future holds.
From now on, one day at a time. We have to enjoy each day as it comes and do the best we can for their physio and developmental exercises to give them the best shot. Here we go into the unknown…