NICU Awareness Month

Before having my son Joseph, I knew that the NICU existed, I had walked past it several times on my way to appointments when I was pregnant.

However, I didn’t know that there were different levels, the extent of my knowledge was that it was where premature babies were treated as I had spent a couple of weeks in neonatal as a baby myself with slight jaundice. I hadn’t ever thought about what would happen though if my own full-term baby was born seriously poorly and fighting for his life. Ignorance is bliss.

My son Joseph was sent straight to the Neonatal unit at our local hospital almost immediately after he was born. He was born via natural delivery at 37 weeks gestation. For unknown reasons Joseph was born in very poor condition. The doctors and nurses tried hard to get him breathing on his own but eventually they sent him to be intubated (put on a ventilator, which for anyone that doesn’t know, is a machine that breathes for the patient).

I understood when the doctor told me he had suffered from hypoxia that this meant lack a of oxygen to the brain. I knew this because 7 years earlier my Nana had unfortunately suffered from severe hypoxia whilst in intensive care following major surgery. This had ultimately led to the doctors deciding to withdraw her life support. So as soon as the consultant uttered that word after they’d whisked my new-born away, I think I went into shock.

I don’t remember even having much of an outward reaction to her words.

I remember being told that Joseph needed to be taken to another hospital with a level 3 Neonatal unit to receive hypothermic cooling therapy. I wasn’t even aware that there were ‘levels’. Within a matter of a few hours, he was transferred to another hospital around 45 minutes away.

The doctors and nurses at this hospital, to this day remain some of the most competent, compassionate medical professionals that I have ever met. (I’ve met a lot!).

They really were a beacon of light, guiding us through a dark tunnel that was to be the beginning of our journey onto the path we now find ourselves on.

From the minute we arrived, nothing was too much trouble for the staff. They took care of us as much as they took care of Joseph. Parking was taken care of, a room for us to stay in just across the corridor was taken care of, all of our meals were taken care of, we were even given staff discount vouchers for the hospital café!

This blew my mind completely as I saw first-hand how tirelessly these staff worked for up to 12 hours a day in such an intense environment and yet they still managed to do so with a smile. They still managed to find the time to do everything in their power to make our life just a little bit easier.

They still managed the time to chat to us, to comfort us, to answer our relentless questions, to explain what all of the unfamiliar equipment was, to give us reason to hope and to teach us how to carry out all of the medical cares that Joseph needed.

I remember being filled with such overwhelming feelings of respect, admiration and gratitude for these incredible people that if I thought too much about it, it would reduce me to tears.

Though we were only at this level 3 unit for 2 and a half weeks out of the huge chunk of time Joseph came to spend in hospital, the impact that it had on me emotionally will never leave me.

I felt terrified when it was time for Joseph to be transferred back to our local neonatal unit at the hospital where he was born. Although I knew it was a positive step in the right direction, the thought of leaving this bubble that I’d come to feel so safe in absolutely filled me with dread.

I needn’t have worried so much though as we were very warmly welcomed back to our local hospital by a team of wonderful staff on the neonatal unit, that during almost 5 months spent there, came to feel like extended family to us.

The NICU is a very unnatural environment to spend so much time in as a new parent.

We were constantly surrounded by a cacophony of beeping machines. I remember finding it strange because it is quiet and yet noisy, bright and yet dark and the time seems to pass slowly but fast all at the same time. It’s hard to understand what I mean by such contradictory terms, unless you have experienced it first-hand.

I found it quite upsetting that for so long we were unable to spend any real quality time with our baby on our own as a family and we had to leave him there every night to come home. His absence filled every room in the house, despite the fact we had yet to bring him home. I saw it in the empty Moses basket next to our bed. I saw it in the freshly sterilised bottles we wouldn’t need as Joseph was tube fed. I saw it in the many gifts, clothes and baby paraphernalia scattered, unused around our house.

Despite this, staff were so good at allowing me to take things in from home so that it felt a bit more homely in his little corner. One lovely nurse found Joseph some amazing sensory lights to go around his cot and this was the first thing that I noticed him really looking at and enjoying.

It was particularly difficult being in the NICU with a full-term baby. I was surrounded by premature babies. Everything was geared towards premature babies and I often felt like we didn’t belong there. The literature we received about HIE (Hypoxic Ischaemic Encephalopathy) was so limited.

One thing I’d like to see change in the future on Neonatal intensive care units would be more information and help for parents of children with HIE and other conditions. Not all babies in need of intensive care treatment are born early and this is a common feeling amongst parents of poorly full-term babies. I know this is something that charity peeps hie are working hard to improve, which is such a positive step forward.

Another thing that I struggled with was the fact that Joseph had never been outside into the world. During particularly dark thoughts, I would worry that we’d lose our baby having never been able to take him outside of the hospital.

One day when Joseph was around 3 months old, a very special nurse made something incredible happen for us. She arranged for us to take Joseph out for a walk around the hospital grounds. It was a military operation, but I will never be able to articulate how wonderful it was to finally see him with the sunshine on his face and to watch him absorb all of the new exciting sights, sounds and sensations.

As I gradually became more confident at being outside with him and all of his equipment, I was soon able to take him out unassisted for daily walks, and my partner was able to join us at the weekends. I finally started to feel like a real mum and that tiny bit of freedom worked wonders for my mental health. I owe that to the lovely nurse responsible for organising this, who I still keep in touch with to share Joseph’s progress.

The staff in the neonatal unit did everything they could to make us feel as comfortable as possible and they supported us for 5 long months whilst Joseph lived on the unit. I say lived because that’s genuinely how it felt. It felt like that was Joseph’s temporary home and we were just visiting him whilst we waited for him to be able to come home with us. We were eventually allocated a room when Joseph was around 4 months old so that we could spend some time each day together away from the bustling and beeping of the neonatal nursery room.

The staff on the unit operated a parent led approach that they took from day one.

I felt like our roles as Joseph’s parents were the main focus and priority of the staff and in turn, influenced the way that they cared for him. I think it’s so easy for parents to feel as though their baby doesn’t really belong to them when put in these situations but I knew that the staff did everything they possibly could to combat that, and to ensure that parents were bonding with their babies.  The staff, I felt were very much led by the parent’s thoughts, feelings and wishes.

The NICU is not somewhere as a parent you ever want to find yourself, but having experienced it, I can’t even fully express how eternally grateful I am to all of the NICU staff. I owe everything to them. They saved Joseph’s life on more than one occasion and they helped to guide us in becoming the type of parents that Joseph needed us to be.

There is a certain quality that people in this role have that I can’t quite put into words, it goes above and beyond empathy, love and compassion. What I can say though is that each and every one of them will be forever special to me, Joseph and all of our family for supporting and caring for us so well during the some of the most difficult and worrying times in our lives.

I Want to Walk

Everyday Annabelle wants to walk. Sometimes she wants to walk in her walker and sometimes she just wants us to hold her waist and support her whilst she takes steps.

The constant bending hurts our backs and even takes a toll on our arms after a while but how can you deny your child the opportunity to walk around when they want to but are unable to do so independently?

One of the things we find most difficult about having a non-mobile child is that she wants nothing more than to be mobile and the obstacles we face trying to give her the form of mobility she desires. She wants to be up on her feet like every other 3 year old but it isn’t always possible.

We decided to purchase the Firefly Upsee and our only regret is that we didn’t do it sooner.

It is a completely different experience for Annabelle, and we are taking it slowly but already we can see the amount of benefits we will get out of one piece of equipment.

We will be able to explore more places, Annabelle will be able to touch new things, she will be able to assist us with the housework which she asks to do on a daily basis and we will be able to use it to aid her therapy.

Annabelle will be able to take full assisted steps. Currently, as a result of increased tone her steps and her gait in her walker are poor and not controlled. The Upsee allows us to fully control the movement in Annabelle’s legs so we can work on the correct placement and weightbearing through the whole of her feet rather than just through her toes!

We are beyond excited for the opportunities she will have whilst using it.

Lost In Lockdown, Left Behind

It’s been six-months since lockdown started, and although for some there is the beginning of a return to some kind of normality, schools going back, offices opening up, for others lockdown continues like some never-ending groundhog day.

Even for those who are beginning to see some light at the end of this most challenging of tunnels, the effects of lockdown continue to cause all sorts of difficulties for families of children with additional needs and disabilities.

A recent survey of parents and carers by the Disabled Children’s Partnership found that the situation in families through lockdown has, and continues to be, quite stark.

Parents reported that the level of care they were needing to provide was increased significantly, with 72% of parent carers saying they were providing ‘a lot more care compared with the amount before lockdown’. Siblings were being drafted in to help too, with 68% of parent carers saying that non-disabled siblings were ‘providing a lot more care’.

All this in response to a collapse in the support offered to families, with half of parent carers saying that the extra support or therapies for their children that they had in place before lockdown had stopped. For families that had received access to short respite breaks before lockdown, three-quarters reported that this respite care had stopped. Lockdown has been affecting assessments too, with two-thirds of families experiencing delays with assessments and approaching half of families saying that annual reviews had lapsed or been put on hold.

Consequences of these issues are serious, with half of families not seeking necessary medical health support for their disabled children, for themselves, or for their non-disabled children.

The overwhelming majority of families have seen a decline in the mental health of their children and themselves, with over half of families also saying that either their physical health, and/or their children’s, had worsened.

Families are facing financial pressures too, with a reduction in income affecting over a third of families, and increased costs impacting on nearly two-thirds. One in five families said they will go into debt as a result of lockdown.

It’s a stark picture, and one that many of us will recognise.

The Disabled Children’s Partnership is using this data to lobby for acknowledgement of the situation that many families of children with additional needs or disabilities are facing, and for increased support and flexibility to help families.

For the full report from the Disabled Children’s Partnership, including many quotes from families that were asked for their views, visit: https://disabledchildrenspartnership.org.uk/wp-content/uploads/2020/06/LeftInLockdown-Parent-carers’-experiences-of-lockdown-June-2020.pdf

If nothing else, this report shows that families that are struggling are not the only ones, the majority of families with children with additional needs or disabilities are struggling too. It also shows us that there are people campaigning for us, trying to make a difference. Let’s cheer them on, share this data, and help to bring about change for all families.

Find your Light

I’m sure it’ll not come as a surprise to anyone reading that parenting (and even more so when there is a child with additional needs) can be incredibly hard.

There are challenges to face that nobody could see coming, along with pain that goes so deep you can physically feel it. You’ll have moments where you’ll think “I can’t do this, I’m not strong enough” and want to run away.

What would I say to those people? Find your light.

There is such amazing beauty in bringing life into the world. It’s an honour and a privilege that you should most definitely embrace as fully as you can. Our triplets were conceived on round three of ICSI and were desperately loved before they were even in my tummy!

I fell in love with the idea of motherhood, and the desire to have a child was so ingrained within me that I was able to withstand the trauma (and to me, it was traumatic) of struggling to conceive. The light at the end of the tunnel was three gorgeous babies!

One of our two boys has spina bifida, hydrocephalus and epilepsy. Those conditions cause so much emotional pain for our family that we have been through some incredibly dark times.

Very recently we have had the absolute worst time of our lives, although this is too raw to talk about in any detail. I really want to say to anyone struggling, find the light.

We were encircled by family and friends who poured out their love and support. I even spoke to “estranged” friends as well as people we have known for a relatively short time who all showed such kindness. Their gentleness and willingness to let me just talk was incredibly important.

Ben and Chloe coped so very well despite their young age and own anxieties about their brother’s health crisis. My mum took them every day and made life as normal as possible so that they could be distracted from the harsh reality we were facing. These things were all our sources of light!

My husband is quite genuinely the best man I have ever known. He is the only person who can make me laugh during the hard times with a well placed (often inappropriate) joke to cut the tension. He knows when I need his strength and when I need him to take more of a backseat. He’d defend me to the end, even if I am wrong, which does happen a lot (you’ve this in writing now Ryan!).

He understands that I am a chronic overthinker and need to talk things out, usually to the point of driving him a little bit bonkers. But he lets me do this because he loves me and knows it’s a coping mechanism. He is my best friend and my guiding light when everything else has gone dark.

So, during the hard times…please hold on.

Find your tribe and love them hard, because it really does take a village! During the darkest of times, trust that your people will find you and help you through, even when you can’t see the way.

Craniofacial Acceptance Month

September is Craniofacial Acceptance Month in the United States.

Approximately 600,000 people in the United States live with a craniofacial condition – or facial difference.  That 600,000 includes two of my children and myself.

We have a rare genetic disorder called Oto Palatal Digital Syndrome (OPD) with Pierre Robin Sequence. This condition involves, among other issues, a small lower jaw that compromises a person’s ability to breathe.

Pierre Robin Sequence is one of the 19 conditions classified as craniofacial by the Children’s Craniofacial Association of America (CCA). Although these conditions differ in severity, the people they affect all have some noticeable facial differences.

The goal of Craniofacial Acceptance Month is to spread awareness about craniofacial issues and facial differences.

Society has come a long way in fostering an environment of acceptance for those who may look different, but it’s clear that we still have a ways to go. Recently, there was a  challenge on TikTok, which had parents scaring their kids with mugshot type photos and pictures of people with noticeable facial differences, having them believe that they were face timing with their new teacher, and then filming their reaction for laughs.

Teaching your children to be afraid of someone who looks different, or letting them believe that facial differences are something to be used as the butt of a joke is not only ableist, it’s poor role modeling.

When the movie “Wonder” based on the novel by R.J Palacio, came out in 2018, it sparked the #choosekind movement. As someone with a facial difference, and as the parent of kids who also have facial differences, I was hoping that people would not just choose to be kind, but that they would choose to be educated.

There are lots of ways that people can educate themselves about craniofacial issues, but here is a small list of things that you can practice or pass on to others if you or a loved one has a facial difference.

Don’t presume competence. It has been my experience that some people automatically assume that if you have a visible disability or difference, then your intelligence must also be affected.

Do ask questions. It’s ok to be curious and interested. It’s not ok to stare and make rude remarks. I love it when people ask about my kids, even though questions from the younger kids tend to be blunt. Usually, when I explain our condition, they accept it and move on.

Don’t pull your kids away if they are staring, commenting, or pointing. Instead, use it as a teaching moment and encourage them to say Hi. If you avoid the situation, it can send the message that it’s ok to fear or avoid people who look different.

Don’t try and befriend or be nice to someone with a facial difference for clout. Like anyone else, we don’t like being used or objectified to make someone else feel better about themselves.

People with facial differences (or any visible disability for that matter) have historically been marginalized and discriminated against based solely on the way they look. Things have gotten better over the last few decades, but we still have a long way to go.

Surviving Hospital

Alfie has spent a lot of this year in hospital, and though most of our hospital visits are planned (appointments, surgery, etc), one in particular was not, and they all came with complications.

Alfie had a gastrostomy in May and that was supposed to be the end of things – he would be tube fed and his lungs would be protected. But of course, it was not. I noticed in the days after Alfie’s surgery his reflux was getting worse, but we were sent home anyway.

We were told to take Alfie back to hospital just a few weeks after discharge.

When we got there, we found out he had lost nearly 20% of his body weight. Nothing they did stopped the vomiting, and this was the start of our longest hospital stay to date, other than when Rory and Alfie were born.

Alfie continued to deteriorate as he could not tolerate any gastric feeding, not even water. The weeks went by and Alfie became more unwell, losing 30% of his body weight in total and dropping down to just 11.9kg. For context, his identical twin is nearly 18kg.

Alfie continued to become more unwell and the only way he kept hydrated was via IV fluids. But every few days he would pull his cannula out or it would tissue on its own. Soon they were struggling to find suitable veins.

Alfie had developed anxiety over the nurses and doctors coming into the room and his heart rate would spike dangerously every time they came in. The procedures became more difficult to do and no one had a plan.

Everything had been tried and it had failed.

This was after watching my child literally vanish before my eyes. No longer was my little boy chubby, happy, and playful. He was malnourished, dangerously underweight, pale, and tired. He would nap throughout the day and night because he simply did not have the energy to stay awake.

There were times we questioned if Alfie would get better. He had so many complications and the doctors were unsure of what to do. Each thing they tried would fail and the situation would become more dire.

Though Alfie is recovering well physically, the mental trauma is still there. Alfie screams when any medical professional comes near him and is inconsolable. In time I hope Alfie will begin to realise not all medical staff will need to do procedures that are painful and upsetting. I hope he begins to trust them again and that this has not caused long term problems for him.

Life Line

As I entered this foreign world of parenting a child with disabilities, I felt like I was alone on an island.

Observing others experiencing parenthood differently was extremely isolating. That’s why I am so thankful for the community that I have found in the online world.

The social media world can be a very toxic place, but at a time when I felt completely alone it was exactly the lifeline I needed. I had a hard time envisioning myself as a medical mom. Every depiction was either extremely depressing or the opposite end of the spectrum of being unrealistically positive and “inspirational”. I could not really see myself or my experiences in any of it.

Early on I was introduced to the world of online groups that were more specific to our situation. It was eye opening to see so many families from all walks of life feeling similar emotions as mine and experiencing the same traumas I have experienced myself.

Being able to express raw emotions without feeling apologetic. Being able to be angry with the hand I was dealt without feeling shamed. Hell, it’s even nice to be able to use medical terminology without explanation.

It has been so beneficial seeing other family’s routines and lifestyles, and I could finally envision myself as a parent. In my interactions with typical families, I found that they attempted to console me by telling me “everything is going to be alright” and “don’t always listen to doctors”.

I would hear that she was going to defy all odds, and wind up able bodied like her peers. It never sat well with me. I’ve always been a realist to my detriment.

In interacting with families similar to my own, I got a new perspective.

That my life may not end up as I had previously imagined it. That I very well may end up parenting a severely disabled child. But most importantly that despite all of that, it was going to be okay.

It makes me optimistic seeing families like mine still travel and have meaningful relationships. That is what I truly find inspirational. Not denying that life can be more difficult in many ways, but seeing despite everything, it hasn’t stopped them from living life to the fullest.

Not glossing over their hardships but being able to witness others navigating through this unique life has been so beneficial to me. And seeing how beautiful this life can truly be.

Our New Normal

Our world has been a pretty small place this year, our household went into lockdown in early March and we proceeded to stay there right through the worst of the pandemic until the shielding program was paused on August 1st.

Through social media I was aware of the enormous community effort to keep spirits up and help the vulnerable with shopping and picking up meds etc, but it all felt so far away. Locked in our home, life for us carried on fairly normally, like it was one long weekend. The longest weekend known to man!

On a day to day basis nothing was that unusual, although as the days mounted up into weeks and months, the usual feelings of isolation and disconnection began to build. We watched from the window as life began to pick up pace outside, more cars, more groups of people walking out together. Soon we were itching to get back out there with everyone else and figure out what our new normal was going to look like.

The first time I drove out to take Thomas to A&E for unidentifiable pain was a surreal experience. During lockdown, families had been painting life-size cut outs of children and hanging them on the park fences holding hands as a symbol of hope and solidarity to other families taking their allocated daily exercise.

As we drove past the park, the cut outs were faded and sagging with many fallen to the floor and trampled on. There was this unshakable feeling that our local community has been through something that we had missed. They were all in it together, while we were isolated at home.

Since then we’ve managed a few trips out of the house for appointments and the odd fun trip for the kids. Gone are social distanced queues outside shops, and the one-way systems. There are a few people around but nothing has been overly busy.

And of course, almost everyone is wearing masks.

It’s very strange going about the town with a mask on, I realise belatedly that no one can see my smile of gratitude when they step aside to let me pass or greeting when I walk through the shop door. I’m trying to remember to say thank you, or hello to bridge that connection with other people.

As we sprint into September and are preparing to send my older two children to school everyone keeps asking me what I will do with myself. Pre-covid I felt like I was constantly running around, chasing my tail, trying to get everything done. The vast majority of it was outside of the house. Now I look ahead and I’m not sure how I will fill my days.

I’m still not overly comfortable with the risks of being out and about so I suspect I will still limit them, and I would have to take my two-year-old with me anyway. I’m really not sure I can cope with him sucking on the trolley locks at the supermarket or picking everything up off the shelves!

So, I suspect that our new normal will continue to be very cautious, spending lots of time at home, and trying to recharge again just in case we have a second lockdown over winter!

Finding the Beauty within the Storm

Our lives are like a beautiful storm.

It causes destruction, has very scary moments and often times we are out of control. However, it is beautiful because we can see so many beautiful moments within the storm. Sawyer’s laugh can light up the room and his perfectly timed pranks on us. When Quinn makes him belly laugh or pushes him in his wheelchair around the room.

There are so many special needs parents out there and each of our days look different but are equally difficult. I know that many people reading this blog are closely tied to someone who may have some sort of special needs. It can be challenging as a parent and caregiver.

There are days that are exhausting and stressful.

So many days we find ourselves scratching our heads trying to diagnose what may be going on with Sawyer. Is it his shunt, is it his GI system acting up? Some days we have been up most of the night and are just barely surviving.

On the other hand the days that we are well rested and we watch Sawyer laugh and giggle with his sister is beautiful. It makes those tough days feel so much sweeter. When he reaches milestones, we weren’t sure he would it makes the long days all feel worth it.

We have a big “elective” surgery coming up that has me stressed and anxious. My mind keeps circling the drain of the what ifs and the fear of the unknown. I can’t read my gut because there are so many emotions involved. This year and the pandemic has not helped my anxiety at all.

Logically the surgery makes sense and we have not seen a doctor yet that has said we shouldn’t do it. They all agree that we should do it and it’s worth a shot for the first time. That makes the decision a little easier but no less scary. All that I can hope is by the end of the recovery we can see the beauty in the storm. We will be able to see a better and improved quality of life.