Reflections and ramblings on motherhood and other matters

Archive for the ‘Uncategorized’ Category

Happy World Breastfeeding Week

I don’t often post about breastfeeding, as these days it can be a contentious issue, and often social media posts about the benefits of breastfeeding are accused of trying to shame those who don’t breastfeed. That is not what I am about, and I am also not a fan of confrontation, so I usually keep quiet about how important breastfeeding is to Kaylee and I. Every family has to choose what is best for them ❤

The WHO recommend exclusive breastfeeding until six months of age, and continued breastfeeding until the age of two and beyond. New research is coming out everyday regarding the illnesses that can be prevented or minimised by breastfeeding, and the benefits to both mother and child. Breastmilk is now even used by cancer patients and body builders, with amazing effects. World Breastfeeding Week is necessary, as breastfeeding mums receive very poor support and information (often given damaging advice from health professionals who unfortunately aren’t actually trained in breastfeeding), that leads to only 15% of babies in Australia still being exclusively breastfed at six months of age.

I think that the fact that breastfeeding has most definitely not been easy is part of the reason that I am so passionate about it. I have had to fight to provide Kaylee with breastmilk, and breastfeeding is not very well understood in Australia. Society is very quick to tell mothers to “just give formula” everytime you hit a hurdle, and even medical professionals give advice which is based on their own opinions rather than science and research and best practice. I have sacrificed a lot to be able to breastfeed, to be able to give Kaylee what she needs. I am very lucky to have had fantastic support from family and friends, and access to information to make informed decisions. This has been vital, as finding correct breastfeeding information is difficult at the best of times. Breastfeeding a child with significant tongue and lip ties, laryngomalacia and severe reflux has not been easy, however it is something that I am very proud to be doing. Knowing that breastfeeding lessens Kaylee's sleep apnoea and helps her reflux has kept me going on the hardest days.

This is a link to one of my favourite articles on breastfeeding, and here is my favourite breastfeeding photo of Kaylee and I.

Taken by Tabbitha Cole Photography, at eight months old.

Taken by Tabbitha Cole Photography, at eight months old.

Motherhood

Motherhood is amazing, joyful and full of love. It is also lonely, isolating, mundane and frustrating. I have found that one of the best ways to combat the loneliness and isolation, and to laugh rather than cry, is to find other mothers with whom you can share these moments, both big and small, and who understand what it is to feel a constant battle for a sense of self. Within my first year of motherhood I have found that it is all too easy to forget who you are, that you are someone, not just someone’s mother. It is easy to lose your identity, and to feel that you are simply a caregiver and an extension of your child. That is how I have been feeling lately.

It is also within that community of motherhood, of lovely, generous and kind women whom you call friends and look to for support, that you can feel at your loneliest and most isolated. When your child is different, and has needs that are not the norm, it is within those mothers that this fact becomes most glaringly obvious, when your experience is not mirrored or understood. The feelings are complex. When you feel surrounded by “normal” and find yourself as “the other”, especially when that relates to the medical needs of your child, it is difficult not to become frustrated and feel jealousy, and to wonder why your child is not as “lucky”, to ask why your journey of motherhood has not been so “easy”. These words are emphasised as everything is relative and subjective, and of course everyone has their own struggles and parts of motherhood that they might feel are not comparable to others. And this is all within a middle class, first world bubble of privilege that is not comparable with much of the world. While my daughter may have complex medical needs, we also have access to some of the world’s best specialists and hospitals, and the money to pay for these when they are not free and provided by a fantastic public healthcare system, and the education and experience to advocate for the best for my daughter. Many of the world’s mothers would view this experience of motherhood as very “lucky” or “easy”. So everything is relative.

However it can be difficult not to alienate yourself from these other mothers, in order to protect yourself from the mirror that is held up between you that finds fault in your experience. And that is what I am struggling with at present.

Kaylee and I celebrating her first birthday

Kaylee and I celebrating her first birthday

Article about the lack of breastfeeding knowledge in the Australian medical system

This article is very important, and should be widely read by pregnant women in Australia. I wish I could say that the lack of breastfeeding knowledge within the Australian medical system is surprising, however my experience has been that the majority of doctors, nurses, midwives and maternal and child health nurses know almost nothing about breastfeeding. In fact if I had listened to the “advice” from the professionals at the hospital when Kaylee was born, I doubt I would have been able to breastfeed at all, and I certainly wouldn’t still be feeding now. Unfortunately I have yet to find a doctor who has any idea about breastfeeding, so I just don’t mention it and ignore their misinformation when it arises. Health professionals in Australia really need to be better informed and pregnant women need to take responsibility to educate themselves.

Lack of Breastfeeding Education – BellyBelly

Tongue and Lip Ties

Today we took Kaylee to see Dr Kestenburg at Coburg Dental, the top specialist for tongue and lip ties in Australia. He used a laser to cut the prominent ties that were affecting Kaylee’s tongue and upper lip. He assessed these ties as being obvious and significant.
Research shows that ties lead to problems not just with breastfeeding (which was ridiculously painful in the beginning and which is still slightly painful but manageable), but also can cause reflux (a major issue for Kaylee still), significant speech and dental issues, and may even be related to sleep apnoea (!!).

This is yet another case in Kaylee’s life of being let down by the many (over ten) health professionals who guaranteed me that Kaylee had no ties, which included assessments by lactation consultants. I knew that something wasn’t right, breastfeeding was very painful and Kaylee was spending over 12 hours out of every 24 breastfeeding, as she could not effectively use her tongue and upper lip to feed. Unfortunately despite mounting research and anecdotal evidence, the many health professionals refuse to update their knowledge and recognise that ties both exist and cause many problems when left untreated. In out case even professionals who understand ties were adamant that Kaylee did not have any ties, and as they are the experts, I believed them, until Kaylee’s assessment by a speech pathologist last month revealed ties. What a frustrating journey, and we are hopeful that Kaylee’s symptoms will now begin to improve.

You can read more about tongue and lip ties Here And Here.

Laryngomalacia – Kaylee’s story

#AirwayDefectsDay

Today we are wearing blue for International #AirwayDefectsDay.

Wearing blue for International Airway Defects Day

Wearing blue for International Airway Defects Day

A year ago I was heavily pregnant and the thought never crossed my mind that I might have a child with medical needs. When we were able to take Kaylee home after her stay in the Special Care Nursery, we thought that the worst was over. Being first time parents who had been told that newborns are noisy, we didn’t question the sounds she made while breathing, until at 6 weeks old we were told by a nurse to get her checked out. A trip to the GP turned into a Friday night visit to the Royal Children’s Hospital, which was to be the first of many visits there. We were rushed straight through that night and tests were done, but eventually we were told that we could go home and get some rest, as long as we kept an eye on her breathing. That was a long weekend, with Kaylee sleeping on our chests for every sleep to regulate her breathing and have her close. Monday afternoon saw us back at RCH meeting with one of the top paediatric ENT specialists in Australia (thank you public health system) , who we have seen regularly ever since.

That first ENT appointment included the first of many endoscopies, a procedure where they place a camera up Kaylee’s nose and down her throat to look at her larynx, while awake and without pain relief. The scope confirmed the diagnosis of Laryngomalacia (LM). Children with LM have underdeveloped soft cartilage above the vocal cords that falls into the airway when breathing. A very common condition, for 95% of children this is harmless and simply means that the child breathes noisily until they outgrow it, at around 1-2 years of age. Further tests confirmed that Kaylee did not fall into this category, and instead had developed severe obstructive sleep apnoea (OSA). The risk that Kaylee would stop breathing for good one night was real, and forever present. Sleep studies confirmed that while sleeping Kaylee’s airways were being blocked, resulting in her oxygen levels often dipping between 70-75% (oxygen levels should never dip below 95%). Lack of oxygen to the brain has some very severe implications, which can include brain damage.

The decision was made for Kaylee to undergo major surgery at RCH, where the specialist would trim the excess tissues. At 6 months of age we took Kaylee to RCH for a supraglottoplasty, which was completed successfully in a couple of hours. Kaylee was then taken to the Paediatric ICU for monitoring for 24 hours. Very fortunately Kaylee’s airways held up well and she did not require breathing tubes at this time. Kaylee’s recovery was painful, and complicated by her severe reflux. Ben and I stayed by her side for the five days that she was in RCH, taking turns when breaks were needed. While in hospital Kaylee lost a lot of weight, as swallowing was painful and she developed a slight oral aversion. Fortunately we were able to avoid a drip by breastfeeding Kaylee while she was asleep and less aware. Once we took her home she returned to breastfeeding properly again.

Kaylee before her surgery

Kaylee before her surgery

Follow up sleep studies showed that unfortunately, due to her reflux Kaylee’s surgery did not fully “cure” her LM. Her sleep apnoea continues, but is now classed as significant, an improvement on severe. We continue to monitor her breathing and hope that she will overtime outgrow her LM without the need for further surgery. Throughout this journey the care received by the staff at RCH has been fantastic, and it is a relief to know that Kaylee is in good hands. Luckily Kaylee has not let her medical issues hold up her development nor dampen her spirit, and our little firecracker has also not had any weight gain issues that can be common in children with LM. Fingers crossed that soon all of these issues will be in the past.

Waiting for discharge on her last day in hospital

Waiting for discharge on her last day in hospital

Article about baby sleep

Babies should wake through the night, new study finds

There is so much pressure and expectation on parents that their babies should be sleeping through the night. I would be rich if I had a dollar for everyone who asked me (especially when she was really young) whether Kaylee was a “good sleeper” or whether she was sleeping through the night – to which I would usually just laugh and say that she sleeps like a baby (aka not much!) It really is no wonder that there is such a huge incidence of pnd amongst mothers in western society, and desperate parents are pushed into “sleep training” under the mistaken belief that their child is not normal, or should not be waking over night. This could not be more wrong! The truth is that baby sleep develops over time. Some babies just naturally sleep for long periods (lucky parents!). Lots don’t. That’s okay. Kaylee was 3 months old before she managed to sleep for 3 hours in a row, and to this day she wakes multiple times a night at ten months old. Given the severity of her sleep apnoea, I am extremely grateful for this.

2015 Gratitude Challenge

2015 Gratitude Challenge

Week 1 – why start this challenge?

As most events and news of note seems to be shared and discovered by my generation, a friend on Facebook shared this challenge a few days ago. I was attracted to the idea of focusing on positivity and gratitude, and of having the discipline to stick at it for a whole year. It is often easy to get caught up in the negative and the mundane in everyday life, while failing to stop and appreciate the little things until it’s too late.

Having Kaylee has been a great example of this. A great deal more time seems to be spent talking and focusing on the challenges and difficulties of motherhood, and being asked about these, however if I was to define my daily life it would not be by her medical issues nor the difficulties (now that she has mostly stopped her hours of screaming), but instead by the smiles, the games played, the growth and development experienced and the wonder and amazement I feel at having created this perfect being (in my eyes) who is growing so fast and is so devoted and attached to me. It is this that I wish to focus on when I think of my daughter, and it is gratitude and positivity which I would like to emphasise in 2015.

Tag Cloud