What matters to ME now – World Prematurity Day 2019

We are almost 4 years on from the end of our IVF journey, our premature birth and our 99 day NICU stay. We are 3 years on from a very difficult year mostly spent in hospital where Rory gained his tracheostomy. We are more than 2 years on since our last hospital stay.

We are 2 years in to the most ‘normality’ we have known.

But what is normal for us?

Twin boys born at 26 weeks and 3 days, weighing 943g and 840g, we had a long and difficult NICU journey with many uncertain days. It was explained to us many times that there was no guarantee we would make it home. Naively when we drove home from hospital at 99 days old, we felt on top of the world. We had prayed for this day for so long and we had overcome everything that had been thrown at us. We were leaving with two babies who were breathing and feeding on their own. We were leaving with two babies who aside from being a little fragile, with a low immune system, fragile lungs and chest and a complicated medical history already, we didn’t have a specific diagnosis or disability that would have led us to a life any different to that we had dreamt of. Or so we thought.

If only then, I had realised that the scars of prematurity would last this long, perhaps I could have been better prepared. If only I had known what was ahead of us. Those 21 days before Rory’s windpipe collapsed and the 3 months in hospital where he eventually ended up with his tracheostomy….were bliss. Those 21 days were the most normal we knew. Even if it meant we had lots of check ups, lots of nurse visits, lots of blood taken to check on our lack of immunity, that really was the closest to normal we ever knew.

But what is our normal now? And how does our premature birth effect our life at almost 4 years old?

  • Chronic Lung Disease – as the boys major organs were under-developed when they were born at 26 weeks, they both have chronic lung disease. This means that their chest and lungs aren’t as strong as they should be and struggle to cope with things such as colds and viruses. They get by with the use of inhalers and nebulisers and oxygen support should they need it in hospital.
  • Feeding / sensory – The boys were tube fed from day 1. The milk they got was calculated by their current weight and they were given a set amount at a set time through their tube. As a result of this, they never learned hunger, they never learned ‘full’ and they never learned to tell us if they were hungry. They had to learn the suck, breathe and swallow mechanism that most full term babies learn as they are pushed through the birth canal once they were able to bottle feed but they still had a set amount and drunk the bottle dry, because that was all they knew. Feeding was a huge thing for them, and as a result, although they were great milk drinkers in the end, and subsequently, weaned well, when it came to solids (they swallowed the puree until the spoon stopped coming) they had issues because it relied on them knowing they were hungry, feeding themselves and choosing and stopping, and all of those things they had never had to think about before. They have only just, at almost 4, learned the feeling of hunger and full. They are very picky eaters and tend to stick to foods of a certain texture, and this is a result of the sensory overload of the medical intervention in their early years. It was only when talking to a professional about this years later, did I learn that those early days could have such an impact on their toddler years and their eating habits.
  • Speech Delay – Austin  at aged 3 years old, didn’t even babble like a baby would. He didn’t attempt sound, he didn’t attempt to communicate. Now, his twin couldn’t physically make sound because of his tracheostomy and he was socially isolated from other children for a lot of the time, because of 1) having no immune system and 2) being unable to attend baby groups and messy play due to risks, and so despite me talking to him and interacting with him and doing everything by the book, he needed more than that. Only in January this year, with the input of an independent speech therapist, he has started to talk. His communication and interaction, and understanding is fantastic, but his speech sounds aren’t great and so not many people would understand what he was saying. Because he was a tube fed baby, and he had a dummy to support oxygen intake and to learn the suck swallow breathe mechanism to enable him to become bottle fed,  it is likely that lots of those muscles he needed to make speech sounds weren’t built up. Austin has a chewy to ‘work out’ those correct muscles, and hopefully he will get there in the end.
  • Anxiety / sensory – both of my boys can be very anxious when it comes to trying anything new. They hate having their feet touched, which when you consider that they had their heel priced for blood sometimes hourly throughout their hospital stay and then weekly once they were home, for the first 12 months of their life, it is no wonder that they have issues when it comes to trying new shoes, wearing new shoes, having their nails cut etc. They both hate wearing hats, having their hair cut or their head touched, and again, the amount of medical equipment, tubes, wires and pipes they had attached to their head as a baby, it is no wonder that they are sensitive to this too. Both boys were isolated for a while as I said previously and so going to new places, new people, can cause them anxiety. It is almost like they are untrusting, because for so long their only ‘adventure’ would be a hospital appointment, with a procedure or a test, or something that wasn’t nice. They both have an anxious disposition.
  • Solo Kidney –
  • Tracheostomy – Rory has subglottic stenosis and as a result requires a tracheostomy in place of his windpipe to ensure that he has a safe airway. This means that Rory requires trained carers, which in the main part is Mummy & Daddy who had to train to bring him home. Nannie and Grandad are also trained but Rory needs a trained nurse / carer to go to nursery with him. Rory shouldn’t do water play / swimming, go to the beach, be around all of those things which are of risk to him, but we have worked hard to manage the risks and as a result, he does have access to some of those things. The tracheostomy means that Mummy and Daddy have to suction andcare for him around the clock and this can be very difficult for Mummy and Daddy, especially in winter months, with a low immune system, a fragile respiratory system and a tracheostomy. It can be very challenging on our family unit.
  • Communication Barrier – as a result of Rory’s tracheostomy, he has no voice and therefore no means of communication. Rory has never been able to cry or laugh and be heard. This has cause self-esteem issues, and Rory struggles with interaction. He will follow a demand / avoid cycle when someone places a verbal cue on Rory, even just as much as saying his name. If someone says your name, you respond and engage in conversation, Rory cannot physically do that and so he will choose to ignore as a coping mechanism. Rory will play alongside familiar faces and engage in play with those he is comfortable with, but in a room full of unfamiliar people he will gravitate towards the quiet corner, preferring to be on his own, that put himself in danger of anyone trying to engage in spoken conversation, because he cannot engage. Lots of Rory’s behaviour of recent, is as a result of his communication barrier. All toddlers fight over toys and struggle to share at some point and he cannot say ‘my turn’ ‘my toy’ ‘no’ and so he will push people away and this sometimes turns into a fight, even with Austin, who knows what this means. But Rory isn’t meaning to fight, he doesn’t want to hurt anyone, he just wants his turn with the toy and cannot say that.

What does Mum find difficult?

Austin and Rory have done amazing getting to this point. On the outside they look fighting fit and as a result people forget where they have come from and whilst that is not an attempt to ‘cling on to the past’ or ‘make excuses’ but actually to point out that their progress from their beginning to now should be acknowledged and not be compared to their peers.

Both boys are meeting milestones within the 30 – 50 months stage and when you consider how much harder they have had to work to get there, that is amazing. But Mum finds it difficult when we are then expected to be ‘just like our peers’ and that we are assessed in exactly the same way with no real consideration for that fact. For example, Austin only just started babbling in January 2019, in 10 months, he is now speaking in full sentences. It isn’t always clear, but if that was an 8 month old babbling, and at 18 months, they weren’t clear, would you be concerned? And that’s without considering all of the above ‘prematurity scars’ that impact speech.

It frustrates Mum when our corrected age isn’t taken into consideration. Nor the fact that had we been born at the correct time, we would have been amongst the youngest of our peers. And also, consideration should be given to all of those things we missed, like baby groups, messy play etc where those all important early skills and experiences were missed which are so important for childhood development.

When considering everything, we are doing amazing. We work so hard for every single little milestone.

The big deal for Mummy at the moment is Rory’s communication barrier and when taking everyone into consideration, it is this that is most prevalent, albeit the upcoming (fingers crossed) reconstruction surgery in spring being the biggie!

People don’t really understand Rory’s communication challenges and how they present. There may come a time, once Rory has his tracheostomy out and has found his voice, and he has been given plenty of time to learn how to interact and speak and communicate, that he may still struggle and there may be other considerations in supporting him with this, but we must bare in mind right now that his circumstance, his lack of social interaction, his start in life and his lack of voice plays a huge huge part in his day to day life, his ability to communicate his mental, social and emotional needs and as a result all of this displays in his behaviour. That may read that Rory is ‘naughty’ and that isn’t so, but he struggles to follow adult direction, respond to instruction or praise and so it may seem that he just ‘does as he likes’ or ‘doesn’t listen’ but its just that Rory needs to learn to communicate a different way.

The hardest thing for Mum is that she is still, almost 4 years in, not able to exercise all of the parenting ideals that she imagined including take us anywhere on her own. She not only has two children the same age, both with very different personality and needs, but a huge communication barrier, a tracheostomy, a bag full of medical equipment and a little boy new to wearing pants.

Thankfully we have an awesome Daddy who works really hard and does his best to be their when Mummy needs him.

Recent research…

Professor Barry Carpenter:

  • Now an average of 4 premature babies in each class
  • 63% of prem babies are identified as having Special Educational Needs and Disabilities
  • 10% with Autism Spectrum Disorder
  • 80% of babies born at 26 weeks survive now compared to less than 50% 10 years ago.
  • Between 28 & 32 weeks the nerve bundles which control speech and language development are developed. Babies born before this point are high risk for speech and language challenges. (A&R born at 26 weeks)
  • Emerging evidence that babies born between 32 – 36 weeks never catch up. (A&R born at 26 weeks)
  • Current evidence shows that pre-term children do not grow out of their neurological dysfunction.
  • Phonics uses neural pathways which are reduced in children born prematurely and therefore they can’t hear sounds and blend. (This would explain Austins current speech struggles)

#worldprematurityday2019

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