babies · children · Lifestyle · Uncategorized

Then There Was You… Final Part

When I think back on those first days and weeks it seems like it all passed in the blink of an eye. However living it was an entirely different story. Days felt like they would never end, and taking our boy home seemed like it was light years away. It was 12 days before I held him in my arms, and even though this was the best thing that happened to us at the time, it just made me realise how much longer our journey would be.

13

He was so sick that we had the “life or death” conversation more times than I care to remember. It’s one of those surreal moments in life where you have the responsibility of making the most important decision you will ever make. I will never forget the feeling and I can honestly say I wouldn’t wish it on my worst enemy.

IMG_8774-2

I don’t want these posts to be a long, monotonous rendition of NICU life from a mothers perspective, but I do think it’s important to share the real parts of our journey. Being unprepared was the worst part for me. I’m a self-confessed control freak and not knowing what is happening, how long its going to take and being able to fix it myself was utterly soul destroying. Needlesstosay we all got through it, despite the roller coaster ride that it was.

42

Instead of going into detail about each and every adversity I will instead share all of the obstacles my boy faced in his first 4 and 1/2 months on earth.

 

  • Sepsis – including having to endure a Lumbar Puncture to rule out Meningitis.
  • Both lungs collapsing within days of each other – including having to endure the insertion of 2 separate chest drains.
  • Pulmonary Hypertension.
  • He was diagnosed with Chronic Lung Disease.
  • A Patent Ductus Arteriosus (which is a hole in the heart).
  • 2 different types of Fungal Infection – one of which there was no treatment plan for. This was when we were first asked if we wanted to continue with Matthews care or let nature take its course.
  • He had several blood transfusions (into double figures).
  • He was transferred to another hospital to have a procedure to insert a Central Line as none of his veins were viable for transferring medicines via cannulas.
  • He was on life support (a ventilator breathing for him) for 10 weeks.
  • He was on Byphasic CPAP for 3 weeks.
  • He was on High Flow Oxygen for 3 weeks.
  • He spent 16 weeks in the Neo-Natal Intensive Care Unit.
  • He spent a further 3 weeks in Special Care.
  • He came home on 0.1LPM of oxygen.
  • He has asthma.
  • He has a Dairy Intolerance.
  • He has quite severe Eczema.
  • He has been re-admitted to hospital on 4 separate occasions since we were discharged.

12278002_10156257257050344_2030836433_n

There are still many issues that Matthew faces every day. He is a beautiful, smart little boy but his time spent in the NICU has had a lasting effect on him, something which might affect him for the rest of his life.

51

He has some quite obvious development delays, like talking for example. He walks and runs and climbs like every other little boy his age, but he really does struggle in other areas.

67

He suffers from some Sensory issues and is in fact in the early stages of an Autism diagnosis.

94a

He gets regular Occupational Therapy and attends a Special Needs Toddlers class, as well as having fairly regular hospital appointments with an array of Paediatric Consultants.

98

Looking at him you would never know there had ever been any problems. He has no obvious physical scarring from his time in NICU. However, after spending 5 minutes in his company you would notice his lack of social skills. How scared he gets when he hears a loud noise. How unconventionally he plays with his toys. How he doesn’t ever really look you in the eye, and many more.

IMG_0033

As a mum it’s heartbreaking to watch your child’s inner turmoil. I am the one person who is supposed to take all his hurt and pain away. However, his condition means there isn’t a lot I can do to help him except arm myself with the knowledge I need to get him through all of the hard times he faces.

IMG_1616

After everything he has been through, this is just a tiny blip on the radar. He is beautiful and bright. He is funny and energetic. He is clever and adventurous. He is my perfect little human and I couldn’t be prouder to call him my son.

IMG_1890

babies · children · Lifestyle · Uncategorized

What’s In My Bag – Venturing Out (Toddlers Edition)

Being a first time mum I have discovered a great many things about having a child. Things like never expecting to have a long lie ever again are obvious, but I didn’t fully understand that every time I ventured out with said child,  it would be the equivalent of moving house with all the “stuff” I’d have to bring with me.

Of course, as the tiny human grows, the list of required items to bring with us decreases. Thank goodness!

My tiny human is almost 2 and so I am happy to report our baby bag has drastically reduced in size. Here is a breakdown of the main things in his bag at the minute.

This is a “Tommee Tippee” Sippy Cup. We have tried a few different ones, but have found that while we are trying to slowly wean the tiny human off his bottles, this is the most effective cup for his water and fruit juices. He doesn’t have to use his sucking reflex to the same degree as his milk bottle and so he knows the difference between the both of them.

If someone had told me how many bibs I would need when I had a baby, I would have laughed in their face. I literally have over 50, just to let me get through the week without having to do a washing every single day! This is a must have item in every baby bag!!!

We are at the stage now where our boy can eat along with us, so it’s not necessarily a big must to have a food jar in his bag. However, he’s a toddler and can be a difficult little monkey at times, so in the instances where he refuses to eat with us, we always have his food jar to fall back on. His Biscotti snacks are a no-brainier!
33573193143_7cbbdb394c_o
This is a given… Babies and toddlers are a messy species so Baby Wipes are an absolute necessity! Nappies for the obvious reasons and Sudocrem because it is not only a fantastic cure of nappy rash but is a soother of many other ailments (for adults too).
I used to laugh at these devices. I now not only understand their purpose but I appreciate them greatly. To restrain your tiny human when they frantically try to break free from your grip! They therefore have a permanent spot in the baby bag!!!
No explanation needed really… This is a requirement for all those moments (and there are many) when mine or the company of his daddy are no longer riveting enough to relieve his boredom. This toy in particular is great for the tiny human as it’s a Sensory one and it stimulates him as well as relieving any tension he may be feeling.
Lastly I always have spare outfit. The reason for this is twofold. Firstly he’s a toddler who loves making as much mess as any other child and secondly, if we’re at a function and he’s dressed up we can get him changed and comfortable as soon as he begins to get tired and grumpy. Nothing worse than being exhausted and stuck in your party clothes. Trust me, if I could get away with going to every function in my loungewear I would!

There are a few things that we always have with us that are missing from this list; his dummy and his cuddle blanket for instance. However these are items that he most likely has on him or with him at all times, as opposed to being in his baby bag.

My hubby and I have found that if we at least have all of the things listed above packed and ready, then our days out are generally successful ones, with as little drama as possible.

babies · children · Lifestyle · pregnancy

Then there was you… Part 2

The day after Matthew was born I was moved from the labouring room into a single room. I felt quite lucky being allocated a room of my own, what with having so little privacy in the open wards. It wasn’t until later on that morning that I overheard one of the midwives telling another staff member that they had put me there so I wasn’t in amongst new mums and their babies.

It broke my heart, but I felt grateful that they had thought about me in that sense.

Still unable to walk and with the doctors debating my requirement for a blood transfusion, my husband wheeled me over to the NICU to see our son. The unit was much scarier in the cold harsh light of day, with a great deal more staff there than the night before.

Matthew still looked the same. Small and fragile.

I still felt the same. Disconnected and ashamed, feelings I didn’t share with my husband.

We spoke with the doctors who told us that Matthew was doing really well considering. The pressures on his ventilator weren’t too high and they were in fact thinking about extubating him in a few days if his stats remained at such good numbers. At this point Michael and I knew nothing more than the facts and figures they were giving us and so we were content to leave every decision up to them.

A decision we did make ourselves was that we wanted to have Matthew blessed by our priest. Michael and I are both catholic and it was important to us that this ritual was carried out in case the worst should happen.

Michael contacted our priest the following day and he was at the hospital within hours, offering to baptise Matthew for us. It was just myself and Michael there standing at his bedside and despite the sense of urgency and the fleeting ceremony, it was actually a beautiful moment for us both and the first time I felt any sense of hope about our situation.

21992027345_6d1d677a66_o

I had been trying desperately to express milk for those first few days, but to no avail. It was important for Matthew to have breast milk ready for when the doctors started him on feeds. Breast milk was easier for his body to digest and kinder on his gut than formula, so I really felt the pressure to deliver the goods as it were.

It took 4 days, but on Sunday the 23rd of August my milk supply finally came in. I managed to express 0.6ml which sounds like nothing, but it was honestly the most rewarding feeling in the world being able to produce anything at all.

21802143979_399e7ac0e6_o

I immediately got ready and took the syringe over to the NICU, where we were met with masked and scrubbed up doctors and nurses surrounding Matthews open incubator.

His lung had collapsed and the doctors needed to insert a chest drain to allow for the fluid and air to escape. I honestly think my heart stopped beating for those first few moments.

We of course consented and were ushered into the family room located across the corridor. Both Michael and I fell apart and held each other, waiting for news.

We waited for what felt like a lifetime. It was in fact 30 minutes. The procedure was successful and Matthew was stable and a lot more comfortable than he had been in the previous half hour.

It was in this moment that my heart swelled for this tiny boy. He was fighting for his life, already enduring more in his first few days of life than most people do in a lifetime. I felt overwhelming pride and an outburst of love and affection. The feelings and emotions missing from those first few days surged through my body like a tidal wave. I sat by his incubator, put my hand inside, placed it gently on his body and wept for my son.

21801152668_5a89ef0923_o

babies · children · Lifestyle · Uncategorized

Matthews Favourite Books – Toddler Edition

So it may have something to do with the fact that I am a lover of books myself, but my boy, even at such a young age, has really been enjoying his introduction into the vast and exciting world of children’s literature . 

I make a conscientious effort to read to him most nights and we have made our way through an abunadance of beautiful books he has been gifted or had passed down to him. However, he has had the best reaction so far to this collection of books in particular. 

1. Always There Bear – Its a story depicting the special relationship between a child and their favourite teddy bear. It’s heartwarming and beautifully illustrated, and takes only a few minutes to read. I find this is the perfect book for Matthew when he’s on the edge of falling asleep. 

2. Harry Potter and The Philosophers Stone – I have to confess. This was actually a purchase I made for myself. I am a self-proclaimed “Potterhead” in all its glory, and I fully intend on turning my tiny human into one too… Hence the introduction to not only JK Rowlings wonderful stories but the most beautifully illustrated books I think I’ve ever laid my Muggle eyes on. This is a working progress which we are taking our time to get through. There’s never a rush with Harry Potter, after all, this is a marathon, not a sprint.

3. The Gruffalos Wean – This humorous and downright lovely book was gifted to Matthew by our NICU friends, who know how much I want books to be a big part of his life. This book is a translation of “The Gruffalos Child” into Scots. It is one of the classic children’s books with a Scottish twist, and being Scottish ourselves we love it!

4. The Very Hungry Caterpillar – Again this book was gifted to us by Our NICU friends. It’s a finger puppet book, one of many in Matthews collection, and to say he loves it is an understatement. It’s definitely not a book we read when it’s time to settle down. He loves the animation of the finger puppet and gets excited by the mere sight of the book. It’s beautifully colourful and vibrant, and just the perfect little story illustrating the transition of a caterpillar to a butterfly. It just never gets old!

5. If You’re Happy & You Know It – This is a musical book which plays the title tune, as you follow along with the words and pictures on the pages. Again, Matthew has several of these books in his collection and this so happens to be the one he’s enjoying most just now as it’s one of the songs he has been hearing most in Toddlers group. They are fun little hardbacks that bring an immense amount of joy to any child exploring them. 

So there we have it. This list will most likely change within a week, as it has done previously. Just means more fun adventures to journey on, and more beautiful illustrations to admire with my boy… And there’s nothing to complain about there. 

…We lose ourselves in books… We find ourselves there too…

babies · children · Food & Drink · Lifestyle · Skincare

MUMMY MUST-HAVES (Chill Out Edition)

Follow my blog with Bloglovin

Generally speaking, raising kids is hard work. Toddlers in particular I find, are like navigating your way through a minefield. They have a seemingly unending amount of energy and if my little human is anything to go by then you will spend most of your day chasing them around the house, barely having enough time to stop and get a breath.

On that basis I have come up with my favourite way to relax and unwind, while daddy takes on full toddler chasing duties. It might not be for everybody and I’m sure all of you mummies out there will have perfected your own “Chill Out” evening, but here is mine…



Face Masks!

I used to be one of those people who had a strict skincare routine, consisting of gorgeous and luxurious products with a price range that would literally bring a tear to a glass eye. However, after having my little human I have found i neither have the time nor the inclination to A. Spend all that money and B. Spend an hour of my day applying layers of serums and ointments to my face. So I have condensed my daily skin routine down to a quick 5 minute cleanse, tone and moisurise at night, and every now and again I will apply a (cheap and cheerful) Face Mask and relax for half an hour. Whether or not it actually helps my skin is by the by… it is just in the act of doing it that the relaxation portion of my evening can begin.

Wireless Headphones!

Mines weren’t particularly expensive (I think around £30 off Amazon) but they are instrumental (no pun intended) in my “Chill Out” process. Be it The Killers blasting in my ears or Ed Sheeran serenading me with just his voice and an acoustic guitar, listening to music is an essential part of my downtime. Not only is it entertaining but most good headphones are noise cancelling and can therefore block out any and all unwanted (and unwarranted) noise during this ever so sacred time.

Good Book!

Now this can be in the form of an audio-book (via the aforementioned Wireless Headphones) or a good old hard-copy that you can hold in your hand. I’m a big fan of physical books, despite in fact having both a kindle and subscription to Audible. Since having my boy I have discovered I no longer have the time to sit down and read the way I used to, so have resorted to listening to my chosen books in my bed once the tiny human is tucked up in his. This hasn’t stopped me from purchasing said books in the physical form, after all there is no better smell than that of a new book (and a new baby of course).

Hand Cream!

This is a new concept for me. My mum always told me to do it growing up, but I found it more annoying waiting to dry, than beneficial. However, as my age has increased sadly so has the dryness and amount of wrinkles on my hands, hands that are now required even more than before for lifting, feeding and holding my child. So I have made a conscientious effort to include this in my daily regime and especially during “Chill Out” time where I can use the crazy white cotton gloves that allows for the “proper absorption of the moisturiser into the skin“.

Candles/ Nice Scents!

For many it’s the fresh, sweet smell of flowers. For me its a Scentsy Wax Bar melted into one of my burners. I find there is nothing more soothing than a darkened room, the wafting of a pleasant fragrance and the flickering of candlelight. It creates a warm and cosy atmosphere that would unwind even the most tormented soul… And a BIG must on my “Chill Out” list of essentials.

Snacks!

Lastly and by no means least… I need snacks. Be it chocolate, cake, or crisps… No relaxed evening is complete without a delicious little snack to indulge in. Chocolate is a no brainer for me. Not only is it delicious but it is scientifically proven to release serotonin into the brain… It quite literally makes you happy… What is not to love???


So there you have it ladies and gents, the Preemie Mummy recommended “Must-Haves” to make any moment of child-free time as relaxing and enjoyable as possible. The most difficult part is finding the time to enjoy it!

babies · children · Lifestyle · Uncategorized

Then There Was You… Part 1

I’ve spoken before about our difficulties in getting pregnant and I had no immediate intention of delving into the deep and dark NICU days, but I’ve recently been inspired by one of the lovely ladies I follow, to share our story.

It’s a long and arduous one, that’ll take a few posts to cover but here goes. 

On the morning of Wednesday the 19th of August 2015 at 10:54, after a difficult and tumultuous 4 day labour, my son Matthew was born. 

He weighed 1 pound and 9 ounces. He could quite literally fit in my hand. 

His skin, red and angry, was so thin and transparent that I could see the deep blue veins running throughout his tiny body. 

Our first encounter was one of panic and fear. This fragile little being , resting on my hip, still attached to his cord. 

I watched, wide eyed, as his little heart pulsated rapidly out from his bony chest. His tiny legs kicking as if uncontrollably against my thigh. Those same kicks, I felt mere hours ago inside me.

He lay there for 1 minute exactly, as the Neo-Natal team watched intently, before cutting the cord and carrying him to the heated Cot on the opposite side of the room. 

I didn’t see him again until 10pm that night. Almost 12 hours later.

My husband and mum were able to see him once he was settled in the Neo-Natal unit but because I had a Haemorrhage and Retained Placenta, I had to go to Theatre. 

After being in Recovery for a few hours I was taken back to my room and waited anxiously and impatiently until they were able to take me over. Too weak to walk and with a catheter still inserted I had to be wheeled over in my hospital bed. 

The NICU was foreign territory for me. I had no idea what to expect, other than what my husband had already told me. 

The first thing I remember was the beeping noises. Little did I know after hearing them for the first time, that they would become the soundtrack to that entire experience. 

So, I was positioned next to Matthew, who was tucked away inside what looked like a mammoth sized Incubator.  His tiny face was covered, showing only his closed eyes and the smallest of openings for his mouth, which had a long tube coming out of it in order to help him breathe. I could hear the noise from the ventilator as it pumped tiny breaths into his lungs, and with every breath his chest rose up and down. 


He was heavily sedated so wasn’t moving much and he had several wires attached to his body via miniscule needles injected into his limbs. 

It was the most terrifying thing I’d ever seen. 

My beautiful, helpless little baby, kept alive by machines and an abundance of drugs that were pumping through the inky blue veins that protruded his wafer-thin skin. 

I’m ashamed to admit that in that moment I didn’t feel a maternal connection to my son. 

He didn’t look like the the blonde haired, blue eyed little boy I had dreamed of and envisioned when I felt him move about inside me. He didn’t resemble the chubby little squidgy baby I had hoped to hold in my arms after giving birth. He was alien looking. I was frightened of him. He looked so delicate that I feared my very touch would be cause him pain. But reluctantly, and after being encouraged by his nurse, I put my hand inside the incubator and stroked his back. 

He barely moved.

The guilt I felt just watching him was unbearable. 

All I could think of was that I’d failed. 

I am a woman. My job as a woman is to carry a child, and bring that child safely into the world. 

What kind of a woman am I that I can’t even do that… something that my body was made solely for? 

All I could see when I looked at my son was how much I had failed him. That I had brought this baby into the world and subjected him to all of this pain and trauma, and all because I couldn’t do my job as a woman. 

And now I didn’t even feel a connection to him. That instant moment of love and pure joy was missing. 

What kind of mother doesn’t feel a connection to their own child? 

Still I smiled and posed for the camera when my husband took our first photograph together… My son and I.Smiling on the outside, and torn apart on the inside, I felt completely alone and full of shame. What’s should have been the happiest day of my life, was one of my darkest. 

babies · children · Lifestyle

Having a Toddler with Sensory Issues!

Today was Matthews first day at his new Toddler Group.

This is a group for babies and toddlers with special needs. There were only 6 kids there, including Matthew, so already a much more intimate group for him than his previous Toddler Group (where there were 16-20 kids there).

The class is led by a Speech & Language Therapist, an Occupational Therapist and an Early Childhood Development Assistant, so instantly I felt like Matthew was in good hands.

The kids and their parents/ carers were all lovely and were full of kind words and advice, and it was nice to not have that feeling of guilt whenever Matthew acted up because they all understood.

Amongst the 5 other kids were a mixture of disabilities (I hate that word) ranging from Cerebral Palsy, Dysphagia (problems with swallowing food/ drink), Autism to Hypotonia (a muscular disease).

Matthew was born 4 months premature and so has certain developmental delays. However, as well as the delays he also has certain other sensory problems and “disabilities”:

✦He is affected by certain noises.
✦He doesn’t like be be touched or held (unless it’s his choice).
✦He is frightened and overwhelmed by large groups/ crowds.
✦He has a very high pain tolerance (will hit himself in the head and doesn’t react).
✦He’s very frantic when playing and doesn’t play with his toys in a constructive way.
✦He doesn’t speak any words (except dada) and grunts to communicate.
✦He puts everything he can pick up in his mouth.

I often convince myself that these issues aren’t important or that they don’t exist and this isn’t helpful to anyone. Let me just say though, it’s not because I’m in denial about it, it’s just that he’s such a gifted little boy in so many other ways that it’s easy to forget he has so many other struggles.

Anyway, the class went well. He had a mid-level meltdown for a good 20 minutes because the class all cheered after their first song (this is a big trigger for Matthew as my family will all attest to). He enjoyed the actual songs, but was anticipating a “Yayyy” after every song (which they deliberately didn’t do because it upset him) and had a great big outburst after each one.

He really enjoyed the second part of the class which was more of an independent play session, but again he didn’t play with the toys in a constructive manner, despite the therapists and development assistant encouraging him.

They assured me that he handled the first class very well and that they will work on helping him overcome and improve on some of the issues he has and hopefully he will be participating and at least enjoying the interactive part of the class in the next few weeks.

It’s the most hopeful I’ve felt in such a long time.