The Problem With Early Intervention

As with most preemie parents, we take Madeleine and Reid to a lot of appointments.  They currently see a paediatrician, physiotherapist, occupational therapist, neurosurgeon, and ophthalmologist, and probably will continue to for a while.  The list may grow longer as we discover other issues and needs.  When babies are born very small and very early, things tend to go wrong, they tend to need extra help, so these appointments are put in place at discharge (sometimes they even begin during their NICU stay), with the intention of providing as much help and assistance to these little ones as early as possible.  You get a team of people on your side, a reassurance that you won't be alone in advocating for your children.  It's a good thing.

In Good Time

At first, we were most worried about Reid.  Before we knew about Madeleine's hemorrhage, before the hydrocephalus, and the surgeries and the shunts, all we knew was that Reid wasn't doing so great.  He needed a lot of help to breathe.  He had a heart murmur and a PDA, and it might need surgery.  From the get go, we saw Madeleine pushing back against the ventilator, getting frustrated at the technology needed to keep her alive.  We saw a spark in Madeleine since the moment she came into the world much too soon - impatient from the very start.  But with Reid, we didn't really see that.  And that concerned me.

I often think that the best part of having twins is realizing how little I actually have to do with who they are.  With one baby, I would imagine you would feel a lot of pressure to do everything perfectly, to not mess up your influence on your blank slate of a child.  That's what I expected, anyway.  But when Madeleine and Reid were born, it became clear from day one that they were very different people.  They had their own personalities, their own needs and sensitivities, their own way of experiencing the world, even though I was doing everything the same.  I realized pretty quickly that my job as a mother wouldn't be to mould or influence them at all, but just to try to stand by them and try not to get too in the way of who they were naturally going to become.

This has been easier to do with Madeleine.  She's naturally curious and talkative and pushy and determined - things that, as a mother of a child who endured fairly significant neurological trauma, make me think, thank goodness.  We need her to be all of those things.  Those things will help her try to overcome the obstacles in her way.  But with Reid, it's always been a struggle.  He's so relaxed, happy to just be held and fed and snuggled.  Happy to just lie there and watch his sister squirming and scooting and reaching for things.  This is who he is - it has always been who he is - but sometimes I think, "c'mon little guy.  Try a little harder."

Madeleine is talkative.  Reid, not so much.  Madeleine grabs her toes and sticks them in her mouth and rolls and grabs her toys.  Reid, not so much.  At our most recent follow-up appointment, we were told this was probably a bad thing.  His muscles are tight, his core is weak, he needs physiotherapy.  He's getting stuck in his patterns, it'll make it harder for him to sit and stand and progress.  He's not making clear sounds, maybe he's having trouble hearing.  It was exactly the thing the anxious mother inside of me wanted to hear.  I was right!  There's something wrong!  But I was forgetting something else very important about Reid, which is that he has his own schedule.  Reid takes his time.  Reid does things when he is ready to do them, and pushing and prodding him to go any faster makes no difference whatsoever.

Eventually, Reid did come off the ventilator.  Eventually, he began breathing room air.  Eventually, his PDA closed without surgery, and his murmur became faint.  Eventually he passed his car seat test, on his third attempt (compared to Madeleine's 'one and done').  And now, eventually, he is making sounds and grabbing his toes and laughing and screaming, and not showing any signs of caring that his sister did it first.

https://vimeo.com/76074675

 

Progress

On Tuesday, the babies and I woke up far too early and headed out to Sick Kids Hospital for Madeleine's usual three-month checkup with her neurosurgeon.  He's seen her four times now since February, and thankfully, we haven't yet had any issues to worry about as far as her shunt function goes.  He asked a few questions about Madeleine's motor development and about potential issues, like having a preference for one side of her body over the other.  No, I told him, no problems yet that we can see.

I was hesitant to ask the question I really wanted to ask, the only question that really matters.  "Do we know anything for sure yet?  Do we know if she's going to be okay?"

He answered in that way that doctors do sometimes, when they don't want to commit to something they can't guarantee.  "It's too early to say," he said.  "But I will say that given the severity of her bleed, I certainly didn't expect her to be doing this well."

It was just what I was hoping for, what we had been dreaming of all of these months.  But at the same time, there was still something nagging at me, still a whirl of anxiety making it's way through my chest.  Of course I'm grateful to hear that Madeleine is doing better than expected - of course!  But even though we've been watching her blow us all always this whole time, even though we had a feeling that she was doing better than she could have been, even though every little new thing she does is a big step in the right direction, I had been trying very hard to not consider the outcome I've always really been hoping for - that maybe nothing will be wrong with her.  I'm hesitant and slightly ashamed to even write those words, to let them slip out of the secret place in the back of my mind I've reserved for the best case scenario.  Best to prepare myself, I figured.  Best not to get my hopes up in case something still goes wrong.  Best to take it a day at a time and not get ahead of myself.

I'm ahead of myself.  I can't help it.  Each time Madeleine impresses her doctors, the part of me that dreams of my girl running and playing and having chatty, articulate conversations gets a little more excited.  The part of me that hopes that she'll grow up and we'll look back and say, "you had hydrocephalus, and look at you know!".  The part of me that hopes that one day we will be the people telling the scared, new preemie mom that their daughter had a grade III intraventricular hemorrhage and you'd never even know it.  And each time nothing goes wrong, that hope gets a little bit stronger.

Of course, I know that if that doesn't happen, if she has developmental impairments that are mild or moderate or crazy severe, if she ends up not being able to walk without help or talk or write or if she needs special help at school, if she has trouble seeing or hearing or whatever it is, it will be more than fine.  She has already shown us that she is perfect and incredible.  I know that even the progress we have made so far is an achievement, that many babies like Madeleine haven't done so well, that we should be counting our blessings for what we have.  I know that no matter what, our lives won't really change that much at all, and motherhood will still by far be the best thing that will ever happen to me, the most incredible, life-changing gift I've ever been given.  I know that health issues and disabilities do not at all change the heart of who a child is.  That they will not change who Madeleine is.

But then there is the part of me who dreams of Madeleine's future and wants her to have only the best, most incredible, easy, beautiful life.  The part of me who doesn't always count her blessings.  The part of me that hopes that we'll beat the odds despite everything we've been through.  That part just might end up pretty disappointed.

Milestones

One aspect of parenting I had never considered prior to having kids is how preoccupied I would become with their development.  When I was pregnant, I thought (hoped?) that I would have this wonderful relaxed attitude towards the twins' growth, that I would just trust the idea that all babies have their own schedule and that they would eventually get there in their own time.  And then I gave birth at twenty-five weeks.  (Funny how that changes things.)

When you go into labour that early, one of the first things you are told during that scary blur of time before your babies arrive, is that premature babies are often developmentally delayed, even if nothing else happens to them.  It's a consequence of missing all of that extra time in utero, and it's totally reasonable.  Then, your babies come out, and everyone reminds you about the chance of delays, and you say, yes, yes, of course, delays, no big deal.  But in your head, you think....I really, really hope we will be the exception.

Eventually, the other women in your life with due dates around yours give birth to full-term babies, and you are happy for them, but also sad for you.  It's a reminder of what you never had, a reminder of all the awful stuff you had to go through because you never made it that far, and you start to become a little bit obsessed with the milestones.  Her little boy is making lots of cooing noises, why isn't Reid?  Her little girl is rolling over already, why isn't Madeleine?  You ask lots and lots of questions.  How much does your little one weigh now?  How much does she take at her feedings?  Is your baby doing lots of tummy time?  Is he smiling or giggling?  Does she reach for her toys?

It is of course, completely relevant and irrelevant at the exact same time.  Every baby is different, and every baby will approach these tasks in their own way.  Reaching a developmental marker late does not mean your baby has a problem.  Except when it does.  Whenever Madeleine sleeps a lot more than Reid (which is most of the time), or vomits, or is grumpy and cries, I worry that her shunt is malfunctioning (and never that she maybe just likes sleep/ate too much/is just grumpy).  When other babies show more progress with motor development, my brain automatically screams CEREBRAL PALSY.  When Reid fails to coo or make noise when he tries to giggle, I wonder if maybe his vocal cords were damaged by his ventilator.

And then, just like that, Reid will start gooing and gahhing when you are talking to him like he's been doing it all along.  Madeleine will easily roll onto her side on her play mat like it was nothing, even though she never expressed any interest in doing it the day before.  And, just when you least expect it, Reid will let out a big, enthusiastic laugh on the change table before he is put down for bed, and your heart will skip a beat.

It is a reminder that, while I did get premature babies, while they had to come out into the world before they were ready, they are still fully-formed, capable little people who have managed to make it through things that even adults would struggle with.  Even though I'll probably never stop worrying, I owe it to them to be patient and trust their own abilities.  They are really, really good at showing us what they are made of.

Follow-Up

When you give birth at twenty-five weeks, you receive a lot of frightening warnings about what might lie ahead.  Developmental delays, complications, surgeries, infections - it all gets thrown out there at one point or another, because the likelihood of something bad happening is uncomfortably high.  But then, probably in an attempt to temper those scary possibilities, they always mention the follow-up clinic.  When babies are born early and small, they are followed long after discharge - until age six - by a great team of people who help those babies meet the developmental milestones that are so important to their growth.  For us as parents, it felt like a bit of a silver lining - yes, all these bad things might be happening, but there are people who will try and help you minimize their effects.  We wouldn't just be waiting to see what the outcome would be, we would be taught how to be proactive about helping our babies.  But at the same time, in many ways, it would be a six-year-long reminder that, while we may be out of the NICU, we are certainly not out of the woods.

Madeleine and Reid had their first follow-up appointment today, with the physiotherapist and neonatologist who followed them (particularly Madeleine) so closely during their hospital stay.  We had heard many times already to expect that there will always be lots to work on - that even if they were doing phenomenally, you would never leave follow-up without homework.  And yet, even though I knew they would find stuff, even though I knew myself what some of those things would be, I couldn't help but feel a little sad when our appointment had finished.

Just before the babies were discharged, I worried about what it would be like to have preemies at home instead of the hospital, where it had started to feel almost like they belonged.  I didn't know how to be a "normal" mother, and in any case, I didn't exactly have "normal" babies to take home.  And then, the twins were discharged.  After a day or two passed, it started to seem so strange to think of them as the same hospitalized prems we had spent months visiting every day.  Everyday they appeared in our eyes to be more and more like every other full-term newborn out there.  I started to forget their actual chronological age (if you ask, I will reflexively tell you that my babies are seven weeks old), started not to notice their misshapen preemie heads, or their general sprawled out floppiness.  They seemed just enough like normal babies - normal, perfect little babies - to forget, just a little, what we had been through for a couple of months before.

Today, I remembered.  Nothing bad was said at follow-up, there were no major issues (in fact, I do think we were told that the babies were doing great), but it was a reminder that there is still a lot to work on.  The past few weeks, we have been such typical new parents - dealing with crying jags and projectile pukes and explosive poops and diaper rashes non-stop eating - that we forgot we also had to deal with atypical parent stuff, like physiotherapy exercises and rounding out heads and shunts and eye contact and lots and lots (and lots!) of tummy time to build up those weak preemie muscles.  We were too busy trying to get Madeleine to smile to notice that she only likes to sleep on the side opposite to her shunt, too preoccupied admiring Reid's head control to realize that it was stemming from his overcompensating back muscles.  Again, not entirely a big deal - they are still completely amazing, thriving babies - but a reminder that they are still a little bit different, that some of the things we will have to think about aren't things that most parents do.

We will go back in two months and hopefully will have incorporated enough of the suggestions we got today to see a bit of a difference.  And then, we will inevitably have a new set of things to work on.  It is difficult to consider that we might never get to a point where being a premature isn't at least a small part of who they are (at least, not while they are still children).  But I also hope that we will be able to maintain our unique parent perspective that, even with their special preemie differences, they are still whole and perfect, with no missing pieces, just as they are.

[caption id="attachment_640" align="aligncenter" width="576"] Don't be silly Mom, you know we're awesome.[/caption]