Living with a Rhino

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I’m sure your curiosity is slightly aroused by the unusual name of the brace Lucy has to wear. Sadly the explanation is a rather boring one: they are made by a company called Rhino!

Lucy has to wear the brace 23 hours a day. We’ve had three weeks now to get used to it and it’s changed how we do things in a number of ways:

Clothing: Her once extensive wardrobe (thanks to very generous friends and family) has now been trimmed down to a few key items. To prevent chafe, she needs to have clothing underneath all parts of the brace. I put her in a sleeveless babygrow and a pair of leggings, day and night. This is the only way I can make sure all the affected areas are protected. Unfortunately for her, it is summer here in Perth and our temperatures have been hovering around the mid-thirties plus. Having to wear leggings means that she is usually wet with sweat, particularly at night when the temperature in her nursery averages 28 degrees celsius. I’ve bought a stack of the sleeveless babygrows from Kmart for $3 each. The selection is minimal so her wardrobe really has become more of a uniform.

Lucy in her uniform!

Lucy in her uniform!

Feeding: I am still breastfeeding Lucy and, while awkward, continue to use the cradle hold with a cushion underneath her for support. It looks pretty funny with her leg hovering in the air but it works and she seems comfortable! The bigger challenge comes with feeding her solids. Our wonderfully convenient bumbo and highchair are now redundant as she doesn’t fit into them. I think I’ve come up with a winning solution though: we have an old couch in the shade outside which is covered with a sheet. I prop her into the corner, sit next to her and do my best to get as much into her mouth and as little everywhere else as possible – no small feat! If things get a little messy, I just pop the sheet into the wash and I always have a carton of wet wipes on hand to keep things tidy. It’s actually really pleasant feeding her outside, looking at the garden, and super comfy too.

My hungry little gannet ready to eat!

My hungry little gannet ready to eat!

Nappy changes: No problems here other than it taking a bit longer as I have to take the brace off and put it back on again. Strangely enough it’s actually become one of my favourite activities during the day. No really! Every time I change her nappy, Lucy gets a short time out of the brace and is able to kick her legs freely and roll around a bit on the change table. It also allows me to monitor her left leg in case the nerve gets affected like it did in the Pavlik harness. So far so good on that front.

Sleep: I knew it would take a while for Lucy to adjust to sleeping with the brace on. Prior to the brace, she had become so mobile and loved to roll around in her cot, often getting stuck then crying for me to roll her back over again, only to flip over immediately after I’d rescued her. Sound familiar?! She had also taken to sleeping on her side, with one hand holding onto the side of the cot. She traveled extensively during the course of a night, and I would never find her in the same location that I’d left her in! Needless to say, she found the brace incredibly frustrating for the first week and a half. She slept fitfully and I was in and out of her room throughout the night for ten nights running, at times really struggling to console my very miserable baby. It was EXHAUSTING! Fortunately her sleep has since started to come right and she’s only waking up about twice a night at the moment.

I put a cushion under her feet when she sleeps to minimise strain on her lower back

I put a cushion under her feet when she sleeps to minimise strain on her lower back

Playtime: This is another major area of frustration for Lucy, again because she had become so mobile before she was put back in a brace. Where I used to be able to leave her playing happily on the mat for a few minutes, now she cries as soon as I leave her. I spend most of her waking hours sitting behind her so that she can sit propped up and play and know that I am with her. I get very little else done in a day! I can’t put her in the bumbo or highchair and make supper or unpack the dishwasher or strap her into a carrier and hang up the washing. All chores now get done when she is napping or at night when she’s in bed.

Milestones: The doctor assured us that being in a harness won’t restrict Lucy from meeting all her important developmental milestones. I suspect, though, that it is probably going to delay them a bit. She was never keen on tummy time (an important precursor to crawling) but now it’s extra-challenging. I make sure she does a bit of time on her tummy each day, even though it’s not very comfortable. Some babies apparently learn to crawl and roll over while wearing the brace so we’ll see if Lucy will beat the odds. Sitting isn’t a problem and I think the brace actually provides a bit of extra support. She wasn’t quite sitting on her own before she went into the brace and I’m still right behind her for the time being. I hope it won’t be long before she can do it on her own.

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If anything will motivate Lucy to crawl it’s her favourite toy – our dog Stella!

Travel: The lovely new car seat we’d bought for when she was ready to transition out of her capsule is unfortunately not wide enough for her now. I had it checked out by an occupational therapist at the hospital and she tried to modify it with some foam padding but it still didn’t work. She then took me across to the wonderful not-for-profit organisation called Kidsafe and they offer seats for hire at a cost of $70 for three months plus $40 for the extra long strap that I needed to accommodate Lucy’s brace. A technician from the hospital then fitted it for me. I feel much better knowing that Lucy is in the right car seat with proper support. Fortunately she is still able to fit into her pram and I’ve just had to put a cushion behind her back to ensure her feet can straddle the edge and not get pushed inwards.

When she first had to go into the brace, I felt completely overwhelmed by the challenge of it but it hasn’t taken long to adapt and find solutions to make things work smoothly. Thank you to everyone who has sent messages of encouragement. I need and welcome them!

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Six Month Setback

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Two weeks into January we were due back at the hospital for Lucy’s follow-up x-ray. It was a lunch time appointment and Jon nearly didn’t join us as he was under pressure to keep building our house while on school holiday. He arrived back home just in time to hop in the car with us and off we went, thinking it would be a quick in and out trip with no drama.

We struggled to find parking at the hospital, as per usual, and eventually found one a bit of a walk away. We struck it lucky when a lady pulled out of a parking and offered us her ticket which was valid for the rest of the afternoon. We made it to the appointment on time and again, Lucy was an absolute star during the x-ray. A quick word to the doc afterwards and we’d be out of there, I thought.

Not so. The doctor wasn’t smiling when we walked in but rather told us grimly that “it’s not looking good” – the words every parent dreads on a hospital visit. He showed us the x-ray and the difference between her left and right hip sockets was very clear. Lucy needed to go back into a brace, this time a rhino brace rather than a Pavlik harness. He didn’t hazard a guess as to how long she would be in the brace for, but said we should come back in six weeks’ time for a check up.

Lucy was fitted immediately into a brace at the orthotics unit then had to go back to orthopedics to have an ultrasound done while in the brace to check it was in the correct position. This didn’t work so it was back to the doctor who then sent us back to get another x-ray done then it was back to the doctor again to talk about the x-ray… You get the idea. When we were finally done at the hospital, we had to try figure out how to get Lucy safely strapped into her car seat for the trip home, since her legs were now out to the side making it impossible for her to fit in without somehow boosting her up. She had missed out on her afternoon nap so was exhausted and hungry but managed to fall asleep in the car, despite being terribly uncomfortable in her make-shift car seat arrangements.

It was a very long, emotional, heavy-hearted afternoon and I knew I was in for a long night ahead as Lucy was bound to take a few nights to get used to sleeping in the brace. I was just so relieved that Jon had come with us as I don’t think I would have coped with all that on my own.

The picture above will give you a bit of an idea of what the rhino brace looks like but I’ll show you more pics in my next post and go into greater detail of what the brace involves.

Within Normal Range

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After three weeks of Lucy enjoying harness-free living after the palsy saga, we had to go back to the hospital for another ultrasound to see what was happening in her hip socket. We went along hoping that we’d gotten our miracle but bracing ourselves in the event that there had been no change.

Our little star sailed through the ultrasound happily and after a short wait we were summoned into the doctor’s room for The Talk. Two smiling doctors awaited us (if you’re familiar with the usual bedside manner of orthopedic doctors you will know how rare that is) and they talked us through the images on the screen. Lucy’s left hip socket now averaged more than 60% coverage on all the critical points they had to measure which meant that is was within normal range and needed no further treatment. A follow-up x-ray was arranged for when Lucy got to six months of age just to check that all was still fine.

Oh the JOY!

We got to go on with normal life again and over the last few months we have loved watching our baby learn to roll, start to sit by herself and begin sampling solids. She is such a happy little thing!

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Christmas morning – Lucy’s first

Enjoying the Christmas festivities with dad
Enjoying the Christmas festivities with dad

Our happy girl at 6 months

Our happy girl at 6 months

Me sharing at church about our prayers being answered

Me sharing at church about our prayers being answered

The Best and the Worst Advice for Future Parents

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It’s become standard practice to joke and roll our eyes about how much advice is given to soon-to-be parents, either from well-meaning relatives or strangers in the grocery store queue or best friends who haven’t got any kids themselves. I can understand why some find it irksome but I actually really enjoyed hearing what everyone had to say while pregnant with Lucy. My approach was to read widely, listen to all the anecdotes and words of wisdom and store it all so that I would never be without options. I hated the idea of having a screaming baby, say, and being all out of ideas on how to settle her. I wanted to have an arsenal I could draw from when my own ideas failed. Knowledge is power and all that.

There’s one piece of advice that stood out for me while attending our antenatal class. The midwife said that your face reflects the world to your child: if you are smiling and happy and delight in your baby, it will feel secure in an otherwise big and scary world. Happy parent = happy baby.

I have taken this advice to heart with Lucy. No matter how many times I have been up in the night, when I go into her room in the morning I greet her with all the excitement and joy I can muster, along with a sometimes-off key rendition of the good morning song. When she’s being fussy and testing my patience, I do my best to not let her know that I’m annoyed. If I’m having a serious conversation with someone, I make sure that when I turn to face Lucy my expression changes in an instant from frowning to beaming. It seems to have worked because our baby is content and peaceful and full of smiles.

There are times, however, when this advice haunts me. Times when no matter how much I try to rally my strength and engage my will power to put on a happy face, my emotions refuse to be reigned in. Like the time we had to go back to the hospital because her left leg was temporarily paralysed as a result of the Pavlik Harness she had to wear. We had already been at the hospital for a few hours before she had to have an ultrasound done on both hips and both knees. She had been her usual cheerful self up ’til this point but the ultrasound was a drawn-out, unfamiliar process that pushed her tolerance too far. For the first few minutes I did my best to hold onto her flailing limbs and soothe her but her cries escalated to screams and nothing would console my three-month old. Eventually I was too choked up to offer any further comforting refrains and had to step back and let my aunt take over the role while I found some tissues and tried to re-group.

I am discovering the power that a little baby wields over a parent. I have never been big on crying, especially in front of people. I like to be composed and collected and there are few things I hate more than mascara smudged all over my face and other such evidence that I don’t have it altogether. But my goodness me, when my little bub is in distress, it completely unravels me.

So to all prospective parents out there, I would like to add an addendum to the midwife’s advice in the hope that it haunts you a little less: to create a sense of security and well-being for your child, you need other people’s help. You simply cannot smile your way through every circumstance. I have learnt that I need someone with me when I take Lucy for appointments at the hospital. If my husband isn’t able to take leave from work, I’m fortunate enough to have an aunt who is willing to drop everything to come to our aid. If you’re a single parent, try to find a family member or friend to go along with you to offer smiles and comfort to your baby if you have come unglued.

This doesn’t just apply once your baby is born: try not to go alone to your antenatal check-ups and scans. Some of us have grown up in circles that take pride in never being sick and having to take leave from work. In my first three years of teaching, I only took leave on two occasions – both times to attend funerals of family members. It was literally only death that separated me from work! But this sort of stoicism has no place where babies are concerned.

Men: no matter how strong, independent and capable your partner is – she needs you at those appointments. If it is within your power to do so, take time off work and be there for her. Nine times out of ten, everything will be perfectly fine and you’ll silently mutter about having to leave work unnecessarily. But if the doctor does find an irregularity, she will need your strength and comfort to deal with the bad news.

Another standard practice is to joke about a mother’s superpowers and yes, we mothers can dig deep and summon more strength than we ever imagined possible when our children need us. But let’s not fool ourselves into thinking we can do this parenting thing alone.

What is the best or worst advice you’ve been given?

A Hitch

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After a few days of Lucy being in the Pavlik Harness, I started to notice that when she had her ‘happy hour’ each day, her right leg would kick furiously as soon as it was set free but her left leg stayed in an abducted (bent up and out to the side) position. I raised my concern with my husband and we thought that maybe it was just her body’s way of healing itself by staying in the optimum position for the hip socket to be corrected. We didn’t want to be paranoid parents and over-react. I still had an uneasy feeling about it though.

A few more days went on and my uneasiness grew when she started to cry as though in pain when we moved her left left leg at change and bath times. I did what any modern, rational mother would do and hopped on Doctor Google to see if any other parents out there had experienced the same thing. We joke about Doctor Google but I tell you what, there is a lot you can learn from other parents on forums and blogs, which is what gave me the idea of starting up my own blog. Doctors, especially in public hospitals, are so pushed for time with their waiting rooms bulging at the seams that they can’t always have nice long chats with you hashing out all your concerns and questions. Also, your concerns and questions usually crop up only once you’ve left the hospital and are now having to sink or swim on your own at home. That’s where we parents can do so much to help each other out by adding our experiences to the online conversation.

I got onto a forum where parents were discussing DDH and came across a parent who had gone through the same stiff leg problem that Lucy had. Now the alarm bells really went off because the mom in question put a name to the condition: femoral nerve palsy. This got me in a total spin and I phoned up the hospital at once to book an appointment for the next day. On one hand I was angry with the hospital for not warning me that this could happen in which case I would have whisked her off to the hospital days ago. On the other hand I was so angry with myself for not trusting my mother’s instincts for fear of appearing paranoid. It sounds so cliched to tell parents to trust their gut, but I learnt first-hand that it is so true.

According to the International Hip Dysplasia Institute’s website, femoral nerve palsy affects 2 – 3% of babies in the Pavlik Harness. What happens is that the muscle on the front of the thigh “falls asleep” and the baby can’t straighten the knee. It isn’t painful; it is just like when you’ve been sitting cross-legged for too long and your leg goes numb. If left too long, though, it could lead to permanent damage to the nerve.

At the hospital, the orthopedic doctor was sceptical when we raised our concern about femoral nerve palsy. He said it was extremely rare and in the four years he’d worked there, they had never seen a case of it. He went on to say that Pavlik Harnesses don’t cause palsy, at which point I tersely presented him with the statistic from the International Hip Dysplasia Institute (Doctor Google: 1  Orthopedic Doctor: 0). I must have displayed enough fierceness to make him change gear a bit and start to take me seriously because he then examined Lucy and agreed that yes, her left leg wasn’t moving and yes, she did seem to be in pain when it was moved for her. He arranged for another ultrasound to be done on her hips and knees to try figure out what was going on.

We were most fortunate on this occasion because our appointment at the hospital coincided with the weekly meeting of the orthopedic doctors and their director. The ultrasound was completed just in time for the results to be discussed at this meeting, so we had the best possible brains looking at Lucy’s case and making decisions on what to do next. This was comforting for me since I had lost faith in the first doctor after he’d shown his ignorance about the link between palsy and Pavlik Harnesses.

When their meeting was over, we sat down again with the doctor and he said it would be best to take Lucy out of the harness for a bit and monitor the left leg to see whether the movement would return to normal. A follow-up appointment was scheduled for three weeks’ time.

We had a blissful three weeks with Lucy out of the harness and and were so relieved when her leg was moving normally again within about three or four days. In the back of our minds the whole time, though, was the concern about what we would have to do next. The Pavlik Harness was an awkward thing to work with but it was not the worst form of treatment available. I dreaded having Lucy undergo surgery and being put in an awful spica cast, which is a plaster of paris cast that stays on for months.

I got hold of our close friends and family to fill them in and ask them all to pray that her hip would come right without the need for any further treatment. Jon and I prayed like crazy every day and when we went to church we asked friends to pray for her at the service too. What we needed now was a miracle.

Pavlik Manoeuvres

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Prior to Lucy’s diagnosis of DDH, I had never heard of or seen a Pavlik Harness, like many of you I’m sure. I’ve included a pic here so you can get an idea of what it looks like from the front and the back.

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We were told that Lucy needed to wear the harness 23 hours a day for at least 3 months. It was not allowed to come off for nappy changes so had to be placed beneath her clothes. Fortunately, because she was so small, she was still able to fit safely into her capsule for travelling purposes, as well as in her bassinet.

So how did it impact on our day to day life? A seven month old baby has a pretty simple existence: they sleep a lot, feed, mess in their nappies, have a bit of playtime and cuddles, and a daily bath. The Pavlik Harness changed how we did all of these things except for the bath.

In terms of sleep, the first five nights were hell. Lucy woke up pretty much on the hour throughout the night. So just to make it plain, she would wake up at, say, 9pm. I would go in and feed her and get her back to sleep which would take about 20 minutes. I’d get into bed, take a few minutes to switch my brain off and drift off to sleep. Come 10pm she’d be crying again. And the cycle would repeat. For five nights. I was exhausted to say the least, and devastated that her sleep had become so disrupted when it had been starting to come right before the harness went on. Just when I was at my wits end, she began to have more settled nights and sanity returned to the household.

As for feeding, the first few tries were clumsy as I tried different positions to try figure out the most comfortable way to breastfeed her. The classic cradle hold ended up being the one that worked for us, with a cushion under her back for support and to keep pressure off her legs. It was more the burping after a feed that was tricky as the harness made it impossible to rub her back and difficult to seat her on my lap for the move we dubbed ‘the butter churn’, where you hold under her chin while moving her torso in a rhythmical circle (works every time – try it!)

Changing nappies was an interesting challenge given that we weren’t able to hold her legs up during the process. We learnt to tilt her onto her side and then feed the nappy in and out of the straps without getting muck everywhere. Within a few days we had it waxed.

As a mum I think the hardest part to get used to was the cuddles. Instead of a soft, squidgy baby to hug, I now had an armoured car! I couldn’t wait for ‘Happy Hour’ each day when we got to take her out of her harness and get in as much close contact as we could without smothering the poor child! It was such a delight to see her kicking her legs furiously and stretching out. It broke my heart each time we had to put her back into the harness after her bath and I had to just remind myself that some babies aren’t even given that one hour of freedom a day and have to be sponge bathed.

After the initial lack of sleep and fumbling about, we quickly got used to life with the harness, as did Lucy. She was not in pain and the earlier we got her hip sorted out, the better for her in the long run. We just hoped and prayed that she would only need to be in the harness for the minimum time of three months and no longer.

Here’s a pic of Lucy in her capsule:

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Evil ECVs

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Allow me to digress a bit here before I go into detail about the Pavlik Harness.

By week 36 in my pregnancy, Lucy was still lying in breech position and it was time to make some decisions about how she was going to be born. There was only a very small chance that she would turn naturally by my due date. The doctor at Kaleeya Hospital presented my options to me:

Option 1: Wait until full term in case she turned but risk having an emergency Caesarian in the event that she didn’t

Option 2: Schedule a Caesarian

Option 3: Attempt a natural birth at one of the other hospitals in Perth that was willing to take the risk of delivering a breech baby

Option 4: Undergo an External Cephalic Version

Your reaction to Option 4 is probably similar to mine: a WHAT?!

I was given a pamphlet to read through with further details. An ECV, it explained, was when an obstetrician presses on your tummy and moves the baby from being head up to head down – the correct position for birth. It went on to say that “this can be uncomfortable but most women are fine.” It also promised this was a safe procedure with a 60-75% success rate.

Now, I’ve never been terribly excited about the idea of giving birth. That is an understatement. I’ve always been terrified of the experience! When the midwife leading our antenatal class showed a supposedly beautiful birth video complete with lovely, soothing windpipe music and dim lighting – and a lady who wasn’t at all concerned about broadcasting her (very naked) birth experience to the world – I lasted about two minutes before I had to exit the room and get some fresh air, only returning for the next session. Despite my fears and prudishness, I know full well that natural childbirth – where possible – is better for both mum and baby than Caesarian section. Also, I have a husband who was actually really looking forward to getting that phonecall from me or being shaken awake in the middle of the night to tell him to get me to the hospital QUICKLY because the baby was coming! We had practised the back rubs and and the breathing techniques and different ways that he could assist during labour and he was prepped and ready for the real thing. I didn’t want to deny him this if there was a chance the ECV could enable a natural birth.

I did a bit more research online and even watched a fascinating YouTube clip of an ECV being performed, during which the patient smiled and laughed her way through the two-minute procedure. (Check it out if you’re intrigued: http://www.youtube.com/watch?v=qT2jBxVoOQc )

That didn’t look too bad! So we booked in for an ECV and went along to the hospital armed with Time magazines to while away the long wait. I was smiling and serene – like the lady in the clip – by the time the doctor was ready to work his magic, knowing that I could experience some discomfort, like the pamphlet said, but not anticipating anything more than that.

WELL! As nice and kind as the doctor was, there was nothing gentle about what he proceeded to do. He applied exceptional force where Lucy’s head and bottom were lying in an effort to shift her. All breath left my body and the pain was so extreme that I struggled to breathe in any more, despite the doctor repeatedly telling me to breathe through it. The tears (and mascara) ran down my face and it felt like my stomach was being turned inside out. I tried desperately to hold back the sobs, which made it even harder to get the breathing under control. Each time he managed to move her a bit, she would promptly move right back to where she was before. After a few failed attempts, he gave up.

For days afterwards, my stomach felt bruised all over, as though I’d been punched repeatedly. I felt quite traumatised by the experience and angry that the info they’d given me beforehand hadn’t adequately prepared me for the pain I had to endure. Perhaps it is more painful for ladies pregnant with their first babies as there is more muscle tone and less space for the baby to move around. If any of you are faced with the same options we faced, at least you now have some balanced information to help you make your decision. You could smile and laugh through the procedure but there is also a chance that you could sob your way through like I did.

After Option 4 failed, we booked a date for a Caesarian at 39 weeks (just four days before her due date). I’m glad we didn’t leave it any later than that because the contractions had already started by the time I went in for the operation. Everything went perfectly and our gorgeous little Lucy was born on 28th June at 4pm on the dot, weighing 2.89kg.

Lucy a few minutes after she was born

Lucy a few minutes after she was born

In hindsight, I’m glad the ECV was unsuccessful. It meant that she was recorded as a breech baby on all her charts so the medical staff paid particular care to examine her hips, which led to the discovery of her hip dysplasia. More on that next time…