Infant reflux and how it is presented by families

Nadia Bartel shared her personal story of her child’s infant reflux overnight. A friend sent it to me as she knows my son Ripley has reflux disease. If you don’t know who she is, her husband is a former football player.

This is the comment I wrote on Nadia’s blog:

I don’t follow your blog regularly but a friend sent me your link as my son has severe reflux disease. I just want to say, I understand how tough it is and what you have been through. I do want to point out though that goats milk is actually still dairy and most babies that are sensitive to dairy, will react to soy and goats milk as well as the proteins are similar. I also want to say that sleep training does not work for reflux babies as they are in pain. A baby in pain needs love and cuddles and for parents to just surrender to its needs. There is a lot of evidence out there that goes against sleep training and I would ask anyone considering it to just read both sides of the argument. Sleeping through the night at a young age isn’t actually biologically normal for a baby, and while it sounds good (believe me I have a 23 month old who is still medicated for reflux and 6 food allergies and wakes 3+ times a night), it isn’t fair to expect babies to sleep all night at a young age and especially if they have food intolerances or any pain or medical condition. Thank you for sharing and I hope that your boy continues to improve and thrive.

I think it was respectful, and I hope she understands where I am coming from. I felt it necessary to point out the mistakes as so many women are still consuming soy or some forms of dairy thinking it is OK, but if your baby has a dairy allergy or intolerance, you need strict avoidance.

But this makes me angry! I am so fed up with a world that advocates for Tizzy Hall’s Save our Sleep and sleep training in general. I support my friend Carly who blogs about this topic a lot and has grown a considerable audience who support her.

I really feel for Nadia, I do, and I am the last person to say “oh my situation is worse” but unfortunately her account does trivialise what it is like for many other families who have children with gastroesophageal reflux disease. Her baby improved immediately on losec (a lot don’t), the reflux disappeared around 7-8 months of age (true reflux disease does not disappear this early). While I feel for her having the sleepness nights and screaming, and all of the other terrible symptoms, 7-8 months is a much shorter time period than many others who have children on reflux medication for years, and years.

I feel terrible for saying this, I don’t want to discount anyone’s feelings, not at all. But like people who choose to follow a gluten free diet when it suits them, and the impact this has on coeliac’s who don’t get taken seriously when we eat out, talking about infant reflux in terms of your personal story is fine. But when you are in a position of influence, as a well known and person, with an audience who listens intently to what you say, you have to be so careful.

I just hope that if a mother has a child with the symptoms Nadia describes, they will do a google search and find Reflux Infants Support Association – www.reflux.org.au – and join a wonderful and supportive group of parents who have been there, know what it is like, and can help navigate through the difficult times.

Despite my feelings about her comments on sleep training, I do feel for Nadia and I hope that this is clear. Having a baby that isn’t “normal”, screams all the time, and then having to fight for recognition of this, and overcome the mentality of hysterial first-time mother, is HARD. It’s almost impossible. If you know someone who has a baby like this, please reach out to them. There is a higher than average incidence of postnatal depression or anxiety in mothers of babies with infant reflux. Cook them a meal, do their washing, dishes, sweep the floor, listen, send them texts or make a phone call. Just reach out.

 

 

Dear Ripley

This post has been coming for a long time, but as the days pass and his second birthday gets closer, I find myself reliving those early days of his life and feeling many emotions. It’s very personal but it encapsulates how hard it is for parents who are separated from their new babies in hospital.

Dear Ripley,

I’m sorry that you had to go through so much as a new baby. You should have been in my arms, being surrounded by love, breastfeeding and being shown off to everyone we love. I’m sorry that you were separated from me when you were just 45 mins old. It’s not fair. People tell me that you don’t know, that you won’t remember and that I will someday forget. But we both know the impact it has had on us and your daddy too.

I’m sorry I didn’t come to the second hospital straight away. I will never forgive myself for that.

I’m sorry we didn’t name you for 48 hours, we were so overwhelmed by everything and couldn’t really say we knew you enough to name you.

I’m sorry if the nurses at the new hospital thought you were abandoned or unloved; you were and are so very loved.

I’m sorry that you had to have so many medications pumped through your tiny body to kill an unknown infection which turned out to be a lifesaving step by the paediatrician.

I’m sorry that you had to wear the ill-fitting CPAP on your face for two days, screaming and writhing to get out from it, until you were so tired and so distressed that the doctors had no choice but to intubate you, putting you into a coma. I didn’t even realise what it meant at the time. You were so peaceful and I was so happy to see your tiny face.

I’m sorry that you had to go in the specialist ambulance twice, and both times I was not there with you. I took the advice of the doctors around me, but I made so many mistakes.

I’m sorry that the demands of our families stressed out us and made us so very tired. I wish I had been stronger and told them to leave us be.

I’m so proud of you for fighting your breathing difficulties and for fighting to have the precious breast milk I was pumping every 2 hours for you.

I’m sorry that the hospital threw out the colostrum. That was unforgivable and to think you missed out on the liquid gold breaks my heart given how many digestive problems and immune problems you have now.

I’m sorry that we gave you formula top-ups, not knowing you would have cow’s milk protein allergy, and that I could have gotten donor milk. I’m so mad that the hospital never suggested it, and how much they pressured me to just let go of worrying about the use of formula.

I’m sorry that you didn’t get to come home and be with us until you were 26 days old.

I’m so proud of everything that you are, your laughter and cheekiness, and your curious nature. You love the same things we do, and we know that no matter how hard the start was, no matter how disconnected it made us all feel, you are our son. You are my beautiful son and I will love you forever.

Mama.

 

Why gentle parenting is important

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There are always new memes going around the internet but there has been one in particular, a newspaper column in the US which basically claims that the problem with our society stems from too permissive/passive parenting techniques and the way we prioritise our kids.

Carly aka Grubby Mummy summarised my thoughts so well overnight that there is little point me reiterating the whole argument against it.

But I did want to reiterate that gentle or peaceful or attachment parenting (there are several names) is NOT permissive or passive. It is not letting your children do whatever they want, whenever they want. It’s about connecting with your child, about respect and it’s also personal. I don’t agree with every other gentle parent out there on every parenting issue.

I can appreciate that some parents get so frustrated with their children that they raise their voice. But yelling and hitting are behaviours we don’t wish to see in our children, so expecting them to not model it, based on our behaviour is, let’s face it, idiotic.

We have had one of the most difficult journey’s I have come across and over the nearly two year period, I have dismissed my feelings, and downplayed how tough it has been. But at no point have I lost my temper with my child (or with my husband in front of my child). I’ve been angry, frustrated, so sleep deprived I’ve driven through red lights, but at the end of the day, I’ve done the only thing I can: I’ve stepped back, let go of everything that isn’t important, and focused on what is important.

Empathising with my child, who experiences chronic pain, but also experiences wild emotions like other toddlers, is crucial. If I scream, yell, put him in timeout etc, we won’t build the relationship I am hoping to have when he is a teenager. Parenting in the early years is exhausting for anyone, but we choose to have children, and we must find the strength to manage our emotions and surrender to the chaos.

 

Minimalism, motherhood and women’s rights

madi-robson-113926There is more to life than shoes. Back in 2007 and 2008, I wrote a weekly column for a mass website called The Vine – it’s still around today but most of my posts have been deleted.

At about 23 years of age, I was pretty obsessed with things like shoes and clothing, as well as going to parties and seeing my friends.

I knew of feminism but I didn’t really understand it the way I do now.

Women’s rights must be equal. For a woman to earn less than a man, is not fair. But beyond equal pay, there are a myriad of issues that are frequently dissected and argued by better writers than I.

I want to talk about minimalism and its impact on women’s rights. How does minimalism help women be better and happier mothers and what impact does that have on women’s rights?

At its core, minimalism is the intentional practice of life. It’s about waking each day, and being conscious of the decisions we make. For many, there is a strong environmental imperative to minimalism due to excess waste, pilfering of our resources and the degradation of our environment. For others it’s purely about debt and money. Or it could be lifestyle, it could be stress.

As I’ve said before, I’m seeing a trend that mothers are embracing minimalism. Mothers have never been expected to do so much. We cook, clean, parent and drive. But we increasingly work as well, go to the gym, cook healthy and nutritious 10+ ingredient meals plus have an active social life, practice mindfulness and self-care plus we are supposed to do all of this without a care in the world… Uh-uh. We can’t possibly do it all, not at all once.

Early parenting is enough of a challenge without immense expectations of all the other things we are supposed to accomplish at the same time.

Embracing minimalism – setting your intention for your life, and focusing on the few things that are really important to you – is the key to being happier, less stressed and more capable as a parent.

Minimalism may bring you more time, money and freedom, and hopefully a greater ability to consider your small part of the world, and of course the many benefits you enjoy. As a very privileged white female, I know I’m lucky. I might not have a lot of money by Western standards, but I’m still incredibly wealthy compared to women in third-world countries. I’ve experienced an excellent education and am about to add a postgraduate qualification.

And those gifts, the things that I am lucky enough to enjoy, I should be using them to bring more equality to the world. I care deeply, but I have not acted. Minimalism means I can stop worrying about earning enough money to pay for all the expensive things in my life, and I can focus on bringing more awareness to you. Perhaps, like me, you see that there is more in life than shoes and pretty dresses – that we owe it to other women, other mothers to work towards equality, not just for women but for all.

Is social media helpful for parents?

jovi-waqa-113605.jpgWriting about social media is nothing new;  without it, we couldn’t share anything.

It has a significant impact on our well-being and our relationships but how does it impact parents?

Social media can be helpful. You may truly benefit from a special tribe of people who see life the way you do. You may be in a particular situation managing a condition or illness, or be without close family, and in many cases your online tribe can help you make the right decisions for you family.

Central to my coping with being a parent with fairly difficult circumstances has been finding like-minded people who can help me understand daily parenting challenges and work out the best way to manage them.

I’ve been focused on letting go of unrealistic expectations, and social media helps me do this, but not all the time.

 

We all have different personalities but some of us have a chronic issue of comparing ourselves to others. I’ve always struggled with this, and I’ve been working hard to free myself from the worry that comes with it.

Social media, magazines and even our friends and family can present a perspective of parenting and life that can leave us anxious and worried. Most of my friends have babies who have slept through since just a few months of age, or have great day naps.

Finding a group of people, online or in real life, that understand how medical conditions impact sleep has been freeing, allowing me to avoid setting an unrealistic expectation around managing Ripley’s habits.

But on the other hand, being constantly surrounded by people facing difficult challenges can become a big part of your consciousness. You might find yourself seeing everything through a set of eyes that are trained to watch out for symptoms.

Like anything in life, assessing a situation regularly to ensure it is healthy for you and your family, is important. Like wine and cheese, learning your threshold or defining your version of moderation is key.

Finding the right balance is personal; one of my friends keeps Facebook just for her immediate family and has removed everyone else. I have many other friends who share every challenge they face. There are no rules on what is right, only what is right for your family.

Navigating social media can be tricky; I find posts about other families experiencing trauma or health issues really troubling, so I have to consciously avoid those topics.

While social media does get a bad rap regularly, I personally feel it’s very useful in connecting us with others facing similar challenges – and in this season of life (parenting) I’m feeling the benefits. Some of my closest friends today have come from one particular group associated with reflux disease. I’m so grateful for that opportunity to meet like minded women who get just how challenging reflux is and its impact on the family’s lifestyle.

Use it or delete it, but make a conscious, intentional choice.

 

Making choices in challenging times

n2zusect73u-sylwia-bartyzelThere is a lot to be said for following the lead of others who have come before us. But sometimes, throwing out the rule book can be beneficial too.

Parenting is challenging. It’s a big part of life, for some, it is their life. For some, their greatest achievement. For others, it is something that happens but is not planned and thought through. Parenting is universal yet there is not just one way to do it. It’s a learning opportunity, as well as an opportunity to teach others. Many liken it to being a teacher, soccer coach, doctor, dentist, chef, cleaner, counsellor and more, all rolled into one frazzled and stressed mess.

Everyone has an opinion on parenting, from what is right, to what is wrong. How it should be done, or how certain choices will affect the child in the long term. And as a result, so many parents feel guilty, or lost, as well as time-poor and just plain over it.

This for me is where minimalism comes in, it’s about removing that from my life which does not add value, and thereby freeing up time and space for the important things.

But being a minimalist, and applying it to parenting, is kind of ‘out there’. To me it seems like an obvious answer to the difficult parts of parenting, and the key to maximising the best parts of life. It’s like a bulls eye that most people can’t see. The path seems well lit to me, it stands out as an obvious choice.

But clearly what is obvious and makes sense to me, isn’t what makes sense to all parents out there, or all people.

The same can be said for parenting styles. It’s widely accepted and spoken that there isn’t one way to parent. But experts including medical practitioners, psychologists, and teachers do have a set of recommendations about managing behaviour, teaching basic language and counting skills, sleep, feeding/nutrition and more.

But in many cases, experts disagree too! Especially in certain areas where there may be two or more distinct camps. For example, in the area of sleep, some believe controlled crying (known by other similar names) is the right way to ‘teach’ a child to develop proper sleep habits. While others believe children will learn to sleep without the imposition of rules. Both of these are supported by a range of experts however it pays to look into the qualifications of who you are trusting. Experts can vary in their opinion and both styles of managing sleep are well supported by a variety of health professionals.

This then leaves the parent to decide for themselves how to manage various situations, which as first time parents, can be daunting. So we parents enter a world of research. And the Internet does have a unique and mostly helpful but sometimes unhelpful way of supporting basically any half-brained theory.

While parents are told to carefully consider what they read on the Internet, as a parent who has had a difficult journey, there is actually a lot to be said for carefully considering what a health professional says. At the end of the day, as a medical advocate for your child, the person most invested in your child’s health and wellbeing, it pays to do your research.

My tips for managing parenting in difficult circumstances:

  • Read both sides of any argument and decide for yourself.
  • Don’t be afraid to question a medical professional. They do not know your child the way you do.
  • Alternative therapies are not going to hurt your child, they might not be effective, but sometimes almost anything is worth a try.
  • Don’t do anything that feels wrong to you – doesn’t matter who tells you to do it.
  • If you’re not, ask a friend or family member you trust for their opinion, and then sit on the decision for some time until you can make your own choice, and feel good about it.

 

 

 

How busyness + parenting impacts relationships

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There are so many articles on the internet about the impact early parenthood has on relationships. I know that I am unlikely to contribute anything new, but part of me wants to share anyway in case it’s in some way relatable to anyone reading.

Being a parent is hard. It’s hard for everyone. When you bring other things to do such as strained relationships, a history of anxiety or depression or a tendency to not communicate, it makes being a parent all that more difficult. If you then add onto it a child with needs that go beyond the normal, patterns that don’t follow the normal curve, I think many relationships would unravel.

Minimalism has been a big part of managing my stress from the moment Ripley was born until just now. And it can also help couples prioritise their relationship too. I know I need to focus on my relationship with other things start taking over, as it breeds stress.

Some ways to curb stress in your life and allow time for your partner and family:

  • Think about how you want to spend your time, and remove everything else.
  • If you’re not sure, think about your values and what you find most important.
  • Think about your needs versus your wants. Consider how you are living your life and whether they align. Could you downsize, do you need two cars, could removing some of this excess allow you to work part-time or not at all?
  • Keep striving for your perfect simple life. More inspiration here
  • Courtney Carver says, if you can’t say ‘hell yeah’ to something, then just say no.
  • Simplicity gives pleasure, life should be about pleasure.
  • Sit with discomfort and feel OK about your choices.

Although it’s easy for me to write a short list like the one above, it’s not always easy to live it. I’ve made some choices in the past few months about how I spent my time that have caused me stress. I was agonising over whether or not to change that when I realised that the stress of the decision was making it worse. I knew in my heart what I wanted.

So I’m trying to live with the notion that saying no is really important to my well being and no one can tell me what I should do or need to be. It’s hard to overcome the programming of being busy because it’s a huge part of our society. But if you can apply a mentality of being less busy, saying no to things that are not part of who you are, that don’t and can’t exist alongside your values, then what are you doing?

#busyboycott