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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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. 


How we deal with baby/ infant Eczema!

As I’ve previously shared, my son was born prematurely and with this comes several potential problems. Due to being subjected to several rounds of antibiotics as a baby, as well as having mine and his dads allergy-ridden genes, he has become a sufferer a few different allergies, including Eczema.

When it first appeared, it was very minimal. Just dry flakes of skin on the tops of his arms. It seemed to be kept at bay with daily moisturising. However about 8 months ago it started to spread and became more severe.

At this time I began to google information and images of it in the hope that I would find some miracle cure, which I didn’t. In fact some of the images I found were so severe that they made me think my boy had gotten off easy.

However with the rapid growth of the condition, came another issue.

Scratching!

This was so much worse than just looking at dry, flaky patches of skin ruining my baby boys otherwise perfect complexion. He was scratching so hard that it was becoming inflamed and at certain points the skin would break and bleed.

Now, the thing with Matthew in particular is that he doesn’t really experience pain in the same way we do. He has sensory issues and because of this he will scratch until his skin is completely raw.

My husband and I had to take action.

We spoke with my Health Visitor who referred Matthew to a Dermatologist.  This would be a few weeks waiting, so in the meantime our GP prescribed Matthew an anti-fungal & steroid ointment as well as cream for moisturising.

For the first few days this combination seemed to help keep the itching at bay, but it soon returned and with vengeance. Our appointment with the Dermatologist was brought forward because of this and Matthew was prescribed a stronger Steroid cream.

This worked wonders for a good few weeks, until once again it just stopped being effective. His condition worsened considerably, to the extent that it was all over his body, from head to toes.

I felt completely desperate. My beautiful boy was in pain all the time, scratching his lovely face and body for some sort of relief, which was only making the patches of skin even more inflamed and painful for him.

It was then, as if by fate, that I came across a post on Facebook of a mum who had experienced the same problem with her little girl. She had discovered a brand called Child’s Farm, who specialise in dermatologically tested skincare products for children. They make Bubble Bath’s, Body Oils, Moisturisers and all manner of products related to children’s skincare. So I bought some of their products and tried them out. Within an hour of use, I noticed a difference.

Matthews skin was less red and angry. He was scratching less and just seemed much more comfortable. We were elated!

Of course, it didn’t solve all the problems, but it did give us a better understanding of the type of skin regiment that seems to work for Matthew. I know it won’t work for every child, but I thought it would at least be helpful sharing our process in case you are a mum or dad at your wits end and you haven’t yet tried this.

So here goes:

  • Every morning we apply one of three steroid creams/ ointments to the patches of skin effected. (We have found this to be the most effective way to ensure the best results. Using the same one over and over again eventually becomes less effective at lessening his symptoms). We use Eumovate Ointment, Daktacort Hydrocortisone and Betamethasone Valerate. (All of these were prescribed by our GP)
  • We follow this with either Child’s Farm Coconut Body Oil, Child’s Farm Moisturiser or Oilatum.  (Child’s Farm products were bought online at their website, but are available in Boots – Oilatum was prescribed by our GP)
  • We bathe on alternate nights so as to prevent Matthews skin getting too dry. On bath nights we use Child’s Farm Baby Bubble Bath in warm water (37 degrees Celsius). Matthew is washed with Child’s Farm Baby Wash, which we use to wash his hair as well as his body.
  • After his bath we pat dry his skin and apply Eumovate Ointment to the effected patches of skin, once again followed by Child’s Farm Coconut Body Oil, Child’s Farm Moisturiser or Oilatum.
  • We also use Epaderm Ointment on a regular basis throughout the day to Matthews elbows, backs of legs and any other folds and creases in his skin. This is a very gentle ointment not unlike Vaseline in its properties. It’s definitely not a necessary part of his skincare routine, but we have used it since he was born and so it’s more of a habit, but certainly doesn’t hurt. (This was prescribed by our GP)

We apply his prescribed creams/ ointments twice a day, in the morning and at night before bed. His Moisturisers are always applied after these treatments, however I often apply them sporadically throughout the day if I feel his skin is needing it.

The most important thing we’ve learned about this process is that we need to keep his skin as moisturised as possible. Missing just one opportunity to do this can result in a breakout and it takes far longer to rectify the issue than just to stick with this skincare regiment.

It has taken 8 months to find what works for us and it has been the most soul destroying time of our lives, helplessly watching our little boy suffer. Hopefully anybody going through the same thing with their wee one finds this useful and if you would like anymore information please get in touch with me. 33852315732_b7a1a777d8_o33968583176_ca6977498e_o33624308340_b55bf55f4e_o33166396944_e65127f39f_o


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…


Trying Trying Trying… Pt 2

In April of 2015 I had a minor meltdown. 

I was home by myself and felt an overwhelming rush of emotions that resulted in a good 8 hours of self-loathing and depression. 

It was a culmination of years of failed attempts and getting pregnant and crazy hormones. 

My husband came home from work and spent his entire evening trying to console me. It did eventually work, but it was definitely a dark day for me, and was a stark realisation of how I was really feeling on the inside. 

I should also mention that I had been suffering from Gallstones as a result of my weight loss and my attacks were becoming more and more frequent. 

On the 2nd of May 2015 I was blue lighted to Wishaw General Hospital with a sever Gallstones attack. I was admitted to the Surgical Receiving Ward and was being prepped for emergency surgery. 

The nurse Lynn came and took some bloods from me and I had to provide a urine sample, just to make sure that everything was all in order before they started the procedure. I was told it would be an hour before I would get my results back, so I sent my hubby away to get himself some food. 

Minutes after he left, my nurse and the registrar came over and pulled the curtains around my bed. I remember feeling incredibly nervous after seeing the serious look on their faces. 

“Danielle we have the results of your urine sample and it would appear you are pregnant”

Well…  Of all the things I expected to hear, I can honestly say that was not even on the list. It was so surreal and so unexpected. But when I began to think about it, I had been having some pregnancy symptoms, including nausea in the morning and sore boobs, something that I hadn’t experienced any of the other times. 

However, my nurse advised me that the urine sample isn’t always 100% so they would have to wait on my bloods coming back to make sure. She advised that this would show my HCG levels (pregnancy hormone), and we would be looking, based on my last period, for them to be around 500-600 mlU/ml.

So while waiting I called my hubby and told him he had to come back,  I didn’t want to blurt it out over the phone.

When he returned I told him our news, as all of the surgical nursing staff hovered nearby to watch his reaction. It wasn’t the fairy-tale setting by any means, but it was a moment in our lives that I will never forget.

While we sat and chatted excitedly about the potential pregnancy, Lynn came over with the results of my blood test. My HCG levels were 32,000 mlU/ml. Significantly higher than the minimum levels Lynn told me was required to confirm the pregnancy. I still have the paperwork with the results on it in our memory box.

So no surgery… And home to celebrate we went!

The next few months were pretty normal. I had my 12 week scan and saw my little button on the screen for the first time. It was wonderful watching our baby grow throughout each different scan. We found out on our 20 weeks scan that we were having a boy, a feeling I had felt since we found out we were expecting.

We were over the moon. We would soon have a son… In fact it would be sooner than any of us would ever have anticipated.


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