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.

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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.

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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.

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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.

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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.

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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.

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

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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.

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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.

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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.

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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.

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Trying Trying Trying… Pt 3

Apologies for this follow up post taking so long. It’s been a crazy few weeks and time has quite literally gotten away from me. We have all been struck down with every sick and flu virus going and even now, I still feel like i’m at deaths door.

Anyway…

Michael and I were just going through the pregnancy motions. Picking up bits and pieces every time we were out shopping, and excitedly imagining  the amazing potential few months ahead of us.

I started showing at the start of August.

The tiniest little bump started to emerge and my clothes began to feel so uncomfortable that I resorted to wearing leggings with every outfit (one of the best parts of being pregnant)!

On the 14th of August I was attending my cousins Hen Party. I felt quite run down, but nothing out of the ordinary. Just tired.

It was later on that night, after going to the bathroom that I felt a bit strange. TMI moment coming here, but I had a funny discharge on my underwear and something just felt wrong.

I put it down to just feeling tired and thought I might have been coming down with the flu. My bones were aching and I just wanted to lie down. So I went home.

I awoke the next day feeling even worse, and I was still having a strange discharge.

It wasn’t until dinner time that night that I noticed something completely out of the ordinary.

I was having a tightening in my stomach, that kept coming and going. So after about 20 minutes I decided to pay attention and time it. They were coming every 10 minutes and were lasting around about 30-40 seconds. No pain as such, just a weird cramping sensation.

After speaking to Michael, I decided to call Midwifery Triage to get their opinion on the matter. The lady I spoke to was lovely. She said it sounded like i might have a urine infection but advised me to head up just for a quick check.

We casually made our way to the hospital, thinking at the very worst, I would be sent home with an antibiotic.

We were shown into an examination room and a midwife, along with a junior doctor came in and asked me to lay on the bed and prepare for an internal examination just to check everything was ok.

This is already an extremely uncomfortable thing to do, not necessarily in terms of pain but with regards to your dignity…

It is quite simply left at the door.

So i reluctantly got myself ready for examination and lay back counting the seconds till it was over… when I was frightened within an inch of my life by the shriek that came from the midwife.

“Stop stop stop”! She instructed the junior doctor.

“Do not go any further… Slowly and carefully remove the speculum”!

She then ever so calmly made her way to the top of the bed where Michael and I were waiting to find out what was going on. She gently pushed past Michael and pressed a red button on the wall behind him and an alarm sounded off in the corridor.

That’s when she bent down next to me and said, “Danielle don’t be alarmed, but we can see your waters and it would appear you are in pre-term labour. The room is about to fill with a number of medical staff, but they are all here to help so just try to stay calm”.

Calm???

Not possible!

The next few minutes, hours and days were a blur. I was medicated to the max with steroids, antibiotics and all other sorts of drugs to try and slow down the labour. I managed a further 4 days holding onto Matthew before he was born, breech and weighing a mere 1 pound 9 ounces.

My angel was laid onto my hip for a full minute before being whisked away from me, for what would turn out to be the most difficult 4 and a half months of our lives…

But that’s a whole other chapter…


Still Trying To Figure This Out!

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So I had a blog a few years ago which I really enjoyed writing.

It was a mixture of beauty and lifestyle posts, and I posted most days. This time around I’m not quite so sure of the content I want to focus on.

I have many interests and therefore many things I could quite happily write about. However recently I’ve realised there is only one thing in particular that I feel passionately about.

My son.

Now I’m not in any way, shape or form declaring myself an expert in the field of paediatrics (I am very much NOT) but I am an expert on my son, and with him comes an abundance of information related to Premature Births, Child Illnesses, Disability and the more recently the Autism and Sensory Spectrum.

When my son was born 16 weeks prematurely I documented his journey throughout the NICU, coming home and everything that followed that, and after hearing it from friends and family so often, I have decided to put all of my words on paper and turn his story into a book.

Now please don’t be kidded, I do not think for a minute that I am an author, or that my careless and often blatantly incorrect grammar is worthy of anybody ever laying eyes on it. But I do believe that it is important to be able to physically hold this story in my hands, as opposed to scrolling through it on a social media site.

So on that basis I am going to incorporate Matthews Preemie Story into this, my daily musings. I hope those of you perhaps reading it, find it helpful or in some way valuable. It is personal of course, and in no way indicative of the journey anyone else may be going through, but i’m sure it will at least be a comfort to know that you are not alone. That someone else has faced the same difficult decisions you have. That someone else has suffered the same heartache that you have.

So from tomorrow I will post an excerpt of Matthews Preemie Story for you all to read. This in addition to, most likely, the many uninteresting and exceedingly uneventful moments of my life.

Enjoy! 😀22017911706_510a97d093_o