Aiden – a survivor and a super star

There’s a song by Baz Luhrmann called Sunscreen. He says worrying about the future is as effective as trying to solve an algebra equation by chewing bubble gum. The real troubles in your life will always be things that never crossed your worried mind. – Tim, About Time

When I watched About Time a few weeks ago, this quote really struck me, because it so encapsulates the unexpected turn our lives took two and a half months ago. It’s a difficult thing to write about,  but for the sake of closure on the journey so far I’m going to give it a go. Maybe putting it out there in the big wide world will take me a few steps further down the road of acceptance too. 

I suppose the best place to start is at the beginning …. 

A few months ago we started to notice that Aiden wasn’t using his left hand and was falling behind on some developmental milestones. An OT assessment and a conversation with Colin’s doctor sister later, we found ourselves in a paedetric neurologist’s office on the 2nd of September. The neurologist examined Aiden and then told us he thought Aiden had suffered a mild stroke before birth. He sent us for an MRI, after which we reconvened in his office to look at the scan. I will never forget that afternoon – a day when previously distant concepts crashed into my world, surreal yet crushingly real all at once. 

The MRI showed that Aiden suffered a severe peri-natal stroke consisting of a shower of clots, and consequently has extensive damage to the right hemisphere of his brain. He has been diagnosed with cerebral palsy, manifesting as left hemiplegia. We’ve since discovered that his right leg has also been affected, so while it hasn’t been confirmed by the neurologist (we only see him again in April), his therapists are treating him for diplegia as well. Within these hard and heavy words though, there is a lot of hope. Despite the severity of the stroke, Aiden is showing remarkable functionality. So much so, that the neurologist was frankly amazed. His speech and vision don’t appear to be affected, and the delight of his temperament is something everyone who meets him remarks on. 

Those are the facts. 

The emotional implications are much harder to express, partly just because we’ve gone through so much since receiving Aiden’s diagnosis. The first six to eight weeks were utterly awful. We thought and talked about it non-stop – we couldn’t turn it off. Short-term implications, long-term implications. Anger. Grief. Denial. Fear. Worry. It was all there and it was exhausting. But one can’t maintain that pace and expend that much emotional energy for too long. Eventually the storm blew out. We burnt out. We are in a different space now. We can talk about the effects of the stroke without breaking down. We’re a little more detached, and a lot more knowledgeable. Aiden’s physio and occupational therapy are now part of our routine. But we are still in the process of accepting this awful, horrible, unfair thing that happened to our boy. An event that we had no control over and that we could not have prevented. It’s not something you get over – it’s something you learn to carry. And the responsibility of it is heavy. 

The hardest thing is the uncertainty. We just don’t know how the stroke will affect Aiden in years to come. At the moment the impact is manifesting as a gross motor development delay. Aiden is nearly 14 months but isn’t crawling, cruising or moving independently. He only started sitting three months ago. He’s got the physical capabilities of a 7/8 month old because of his low muscle tone, but the desires and instincts of a pre-toddler. It’s frustrating for him and hard on us. But we have a lot on our side – early diagnosis and intervention, great doctors, plasticity – and he is showing a lot of progress from the therapy already. He’s using his left hand a lot more, is starting to transition between positions and is trying to pull himself up on things. But it’s hard to keep fear from the heart. It’s hard not to compare. It’s hard, but so vital, to hold onto hope.

In the process of processing there have been a number of things that have lodged in my heart and are helping me move forward. One of them is the word ‘tension’. Some wise people we met recently, who are on a different journey but in some ways a similiar one, warned us that the fear of the future is not something that goes away. They also warned that the things you worry about aren’t necessarily the hard things, and the challenges often come from unexpected quarters. There’s tension between reality and expectations. There’s tension between carrying on with life and learning to carry this new load. There’s tension between realism and hope. The tension will not go away, but we will learn to manage it better. 

It hasn’t even been three months since this bomb went off. Debris is still falling from the sky. There’s so much more to say, but it’s impossible to recount all we’ve been through, and I’m not sure it would be a helpful exercise. The important thing is that we are starting to recognize and focus on things that we can be grateful for in this new reality. And the biggest thing is Aiden. He is a precious, wonderful child who’s place is so deeply entrenched in our hearts and who’s value is so indescribable. He’s a fighter, a survivor, our little fiery one. And we love him madly. 



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Aiden’s nine month update

Our hopscotchy, bunk-doodling, splendiferous, wondercrump, whoopsey-splunkers, phiz-whizzing, whipple-scrumptious ickle grunion is now nine-months old. The physical transformation I described in my last post is now going toe-to-toe with the emergence of a delightful personality. Somewhere in the last two months our solemn baby has transformed into a cheerful little cherub. His vocal range is much in evidence and we’re finding ticklish spots that never fail to elicit a heart-warming chuckle.  Aiden’s social side is becoming more evident. The time Colin has put in with Aidy lately is really showing dividends, and our boy always has a smile for his daddy, even if he is mid-howl when Col walks through the door. It’s quite funny to watch this crying child stop, assess, smile, and then go right on crying again! 

As far as the brothers go, there’s a simply beautiful relationship developing. Aiden really has eyes for Cam and will endure an surprising amount of abuse at his hands. Being whacked on the head with a variety of objects doesn’t seem to bother him if his brother is doing the whacking! (Obviously we don’t encourage the head-whacking and are trying to promote gentler interactions!) Cam is great at imitating the noises Aiden makes, which Aiden simply loves. He’s also building up a reportoire of tricks that always get a smile or giggle from his adoring younger brother.  We have been a bit worried about Aiden’s development as there are a few milestones he hasn’t reached yet – like sitting on his own and reaching for his toes. So earlier this week we took him to an OT friend of ours for an assessment. She said that there’s nothing to worry about. He is behind in some areas, but ahead in others, which is quite normal for a prem baby. Developmentally, he’s about the same as a seven-month old and she’s told us not to expect more. It’s amazing how big the difference is from being born those few days earlier than Cam was, even though he was also prem. We’ve got some exercises to do now to help Aiden catch up and I’m sure it will come right soon. 

I’ve seen a marked difference in the past two months in terms of my ability to cope. Having two little ones is becoming much more manageable with every month that Aiden gets older. It gives me hope that our plan of having the boys close together wasn’t so foolhardy after all!   

Aiden’s four month update

Last Friday we hit the four-month mark with Aiden. He’s picking up weight well but is a small little fellow, clocking in at the lower end of the growth chart. Perhaps the Goodwin genes are stronger in this one; perhaps he’s just a late bloomer. Time will tell.

At 11 weeks old (14 December to be precise) he started smiling, and this time round I was the lucky recipient of his first grin. He’s gurgling delightfully and his level of interaction grows each day. He’s generally a very easy baby and, as non-first children must, has learnt to be fairly adaptable. He loves being in both the sling and wrap, neither of which I got right with Cam.

The only thing blighting our existence right now is Aidy’s reflux. Just when I think it’s getting better it seems to get worse again. He’s also struggling with wind and those pesky ones that I don’t manage to get out during the day, build up and come back to haunt us at 3am. It’s for this reason that I chose ‘ickle grunion’ (little someone who moans) as the Roald Dahl phrase for this month’s photo – the soundtrack to our wee hours is the poor mite complaining about wind-related discomfort.

We are nearly at the three-month mark in terms of his corrected age, and I mention this with a mixture of trepidation and hope. Hope, because at three months some things usually get easier – winding, longer stretches between feeds, more interaction to fill one’s heart. But trepidation too because at four months Cameron started cutting his first tooth and The Dark Days (which lasted for the next five months) began.

In some ways the last four months have flown by, in others I feel like my entire life has become a never ending loop of feeding, burping, rocking … Do it all again. But from our previous flip on this ride I know how many changes come about in the months ahead – solid food, more sleep, mobility! So at the risk of having to eat my words, I’m going to say that it feels like we are through the hardest bit. The very fact I have written this post after months of silence seems proof of that. We live in hope!

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Finding a new normal

We’ve had a number of milestones to celebrate lately: Aiden has been home for three weeks, he is now a month old, and this past Tuesday would have been his due date. With these events behind me I feel like I can finally find a bit of objectivity to write an update.

The first week home was incredibly tough. Having two kiddies under one roof was much more of an adjustment than I anticipated. I spent most of it on the verge of panic, feeling as though someone had turned the speed on the treadmill up to max and that it was only a matter of time before I face-planted into the floor! Cameron and Aiden seemed to have such vastly different needs and I couldn’t fathom how I was going to find any sort of rhythm that somehow juggled both. This wasn’t helped by the fact that the brotherly love we’d anticipated just wasn’t there initially. Cameron wasn’t aggressive towards his brother, but any time I was with Aiden, he pumped up his attention seeking antics a few notches. This meant a high energy toddler throwing himself around the room, shouting ‘Look at me’ and resorting to physical violence (towards his mother) if that didn’t garner the required result. I had also forgotten just how exhausting the newborn phase is. Aiden has been struggling with bad cramps which hasn’t helped and I am averaging four hours of very broken sleep each night.

But somehow in the weeks since then we’ve all adjusted. Cameron is much more settled and starting to accept his brother. He very sweetly imitates Col by saying ‘Hello boy’, asks to hold Aiden occasionally and doesn’t get as stressed when his baby brother cries. He’s also protective of Aiden and gets upset if other people go near him ­­– evidenced by him shouting ‘No’ and pointing an accusing finger at the guilty party until he or she backs off!

I have been surprised by how I’ve adapted to the lack of sleep. While it takes me half an hour to wake up in the mornings (and I spend most of it wondering how on earth I’m going to get through the next hour, never mind the day), when I’m up and going I’m generally okay. My short-term memory is completely shot though and I’m doing a number of incredibly stupid things every day, but fortunately to no detrimental effects yet! I am also feeling much stronger physically which is a relief as I found the recovery from this c-section much harder and more painful than my previous one.

The passing of Aiden’s due date didn’t find me as contemplative as Cameron’s did, but I think that’s because I’ve had too much emotional baggage from Aiden’s last month in utero, birth and hospital stay to work through. I am just grateful that it has come and gone as we’ve now caught up to where we should have been and I know that soon the pressure of this phase will lift a bit.

Physically Aiden is doing really well, starting to put on weight and developing some lovely rolls. (This does lead me to think that while I’m disappointed I didn’t have the natural birth I was hoping for, when I look at the size of him now I’m just grateful I didn’t have to push him out of my lady parts!) Aside from the cramps, the only struggle in his life is second-child syndrome. Cameron is such a forceful personality and at such an attention seeking age, that poor Aiden is getting lost in the whirlwind a bit. But our tiny man has a big voice and is starting to use it with gusto.

Despite the chaos that is our life right now, I find myself in a contented and grateful space. I am really enjoying having a baby in the house, probably because I am so much more relaxed this time. In the absence of anxiety there is far more space for delight and appreciation. We have also decided that we won’t be having any more children and consequently I’m cherishing everything about Aiden so much more because I know I won’t experience this again.

And as for Colin … he’s burning the candle at both ends! Work is incredibly busy yet he’s putting in plenty of hours playing with Cameron and bonding with Aiden. The pace is taking its toll, and while I’m trying to ensure he gets good sleep, the man is exhausted. But December is not far away and in six weeks or so he can take a well-earned rest.

But now I must wrap up. Aiden is stirring and once I’ve fed him, it’s time for me to snatch what sleep I can! Until next time …

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NICU – remembering, adjusting, surviving

The fact that both my boys were born at 35 weeks is an rather odd coincidence for me. In some ways having had a baby in NICU has made it easier this time round. We’re far less anxious and are approaching the whole situation with more patience.

Aiden has been in for five nights now and we’ve been given no indication of when he’ll be discharged. What’s more, we haven’t asked for one. We learnt last time how quickly things can change; how the information one receives in the morning is irrelevant by the afternoon; how babies have breakthroughs and suddenly the whole process speeds up. We are also approaching each day without the expectation that it will be the same as the previous one. I remember Cameron feeding marvelously on day three of his stay, and expecting to have him home by the Friday. On the Thursday he slept all day, wouldn’t feed at all and was only discharged on the Sunday. Making plans for more than the current day is just a waste of energy so I simply don’t.

I also remember how every day in the NICU feels like two. You can have a great morning, with excellent breastfeeding sessions, which leaves you feeling hopeful and positive. But that very afternoon, your baby can’t be persuaded to latch, develops jaundice or just won’t be roused from sleep and you’re left feeling utterly discouraged. The range of emotions one experiences, the lack of sleep and constantly changing circumstances leaves one emotionally drained and confused about what happened when.

But of course it’s not the same this time round as it was with Cameron, because this time there’s a two-year old at home to consider. And so at the moment I find myself living in two parallel realities. There’s Aiden and our quest to establish breastfeeding. And then there’s Cameron, needing reassurance, patience and a lot of energy. Colin is bearing the brunt of caring for Cam, and trying especially hard to spend time with him on weekends as Cam is spending the majority of weekdays without either Col or I around.

Days in NICU are divided into three hour sessions, and that division has carried over to our home as well. Those sessions when I’m at home leave me feeling like I’ve tried to squish in a whole extra day. Trying to keep the house from disintegrating into total chaos, remembering to turn the oven on early enough to heat whichever freezer meal is on the menu tonight, spending time with Cam, getting that three-hourly reminder that it’s time to express again – at times it’s overwhelming. By comparison, the NICU, where all I have to do is cuddle with Aiden and attempt to feed every few hours, feels like a holiday!

Since I’ve been discharged, the two realities are coming closer together. There are moments when they are almost touching. Like yesterday when I changed Cam’s nappy and mentally compared it to changing Aiden’s. It was such a strange experience and I could almost feel my brain short circuiting! I can foresee a moment when the two realities merge, the effort of maintaining them both will catch up with me and I’ll just cry uncontrollably for a while! Until then, we’ll just keep swimming.

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Day three update

Just a quick post to update you on Aiden’s progress today. His blood tests showed that the infection has gone so the doctor has stopped the antibiotics. He has also started to digest the breastmilk and is up to 5ml every 3 hours now. This is a huge relief for us and for him – the isotech (nutrients given intravenously) is providing all he needs but not filling his tummy so the poor boy was hungry and unhappy this morning. At least now his tummy is being filled up, even if he isn’t able to taste the milk as its being given through a feeding tube. Odd to think he’s three days old and hasn’t tasted anything yet!

He has developed jaundice and his bilirubin level is 187 (should be below 160). So he’s been under the UV lights since 15:00 this afternoon and will remain so until tomorrow morning. The downside of this is that we can’t hold him so Col missed out on his afternoon cuddle. Fortunately I had lovely cuddles this morning and a two hour kangaroo mother care (KMC, skin to skin) stint from 09:00-11:00. Lots to be grateful for today!

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Introducing Aiden

At 8:59 on Tuesday morning our son Aiden Mackenzie Rip was born. He came into the world five weeks ahead of schedule and via an emergency cesarean. On Sunday afternoon Colin brought me to the hospital because I was having contractions again. I was admitted and the initial assessment was that I had a urinary tract infection. However on Monday morning tests showed this not to be the case and after a kidney sonor, the doctor was on the verge of discharging me. However during a routine check of the baby’s heartbeat the nurse noticed that Aiden’s heart rate had decelerated while I was having a contraction – a sign of distress. I then went to the gynea for a scan and although everything looked good, he decided to keep me for another night for observation. During the night Aiden’s heart rate repeatedly dropped, although this time without any contractions being present and the gynea scheduled the c-section as soon as he’d seen the results of the night’s observations.

So our little boy is now two days old. Lung x-Rays showed that he either had fluid on his lungs or congenital pneumonia. A sonor of his lungs yesterday showed them to be clear of fluid so he’s on antibiotics for the pneumonia. They are going to do a blood test this morning to test the level of infection and will then increase or decrease the duration of the antibiotics depending. At the moment he is unable to digest anything. They are feeding him intravenously and trying him on 2ml of breastmilk every three hours. I am getting to know my breastpump again and getting a nice stockpile of milk going!

I am doing well but finding the recovery from the cesarean much more painful than last time (although it’s possible I’ve just forgotten how bad it was). I was mobilized yesterday and Col and I both had our first Aiden cuddles yesterday afternoon – Col got first dibs this time round!

The first occurrence of premature labour was on 3 September and Aiden’s arrival brought to a close a long and taxing month. Both Col and I are finding our emotional capacity to be a little thin. Col is having to balance work with hospital visits as well as playing the role of single dad to a demanding two-year old. Between my parents and Colin’s mom we’ve got an amazing amount of help with Cameron but logistics are complicated at the moment!

I am finding the NICU aspect of things much harder this time. When Cameron was in NICU everything was overwhelming and new and I sort of developed tunnel-vision. Now so much of it is familiar and it’s almost as if I have more capacity to notice other things as a result. I am far more conscious of all the wires and tubes attached to my baby. He just seems far too tiny to be in the world and I find myself getting tearful when I’m with him.

Besides all of that though I think we are both struggling to process the emotional fall out from Tuesday morning. The gynea said that if he’d discharged us on Monday I probably would have noticed a decrease in Aiden’s movements but by the time I did anything about it, it might have been too late. The doctor’s relief was palpable when Aiden was delivered and it was only when we saw that, that we realized how serious the situation had been. As the days pass I’m sure the gratitude we have for our healthy boy will override the fear of the close call. At the moment it’s a bit raw though and creeps up on us at unexpected moments.

I’ll try for another post later today or tomorrow with another update (the fact that I have the energy and desire to blog again is definitely a good sign). But for now, nap time!

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