I’ve been wanting to share my breastfeeding experience for a while, but I’m very aware that it’s a unique set of circumstances and therefore doesn’t really apply to the majority of mothers. It does however, apply to a minority of women like myself who tried and failed, so I’m sharing it all the same. Read More
Happy New Year lovelies!!!
Today is the 2nd Anniversary of the day we brought our boy home from hospital.
He spent his first 138 days within the confines of Wishaw General and believe me when I say that it felt more like years than days.
Today marks his 869th day on this planet and I honestly mean it when I say it feels like only yesterday that we brought him home. All snuggly in his (far too big) Emile et Rose outfit, carefully placed in his (even bigger) car seat.
After fighting so hard to bring him home, it really did take Michael and I a good few days to get over the shock of figuring out what the hell we were supposed to do with this medically fragile little “newborn”!
He has since filled our lives with more joy and love than we ever knew was possible and my heart swells more and more every single day I wake up to his beautiful face.
We had our first appointment of the year yesterday with his new consultant. Despite being discharged from Chronic Lung & Neuro, Matthews doctors are fully aware that he is in no way out of the woods with his health and so his care has simply been passed on to another service… this time it’s the Asthma & Gastroenterology Clinic.
Our care plan going forward for the year will include the following NHS/ Local Council services:
Paediatric Occupational Therapy
Speech & Language Therapy
So as ever, it’ll be a full year for my boy and us.
I am also going to start documenting Matthews behaviours and development in written and video format. It’s amazing how many things I forget about when we are at appointments because of the unending list of concerns we have. But by doing this, it means when it comes to “official diagnosis”, we will have all of the information to hand and on video.
I will sign off on this post with a bit of symmetry (which I love 🤪)… Matthew starting 2017 and Matthew ending 2017! ⬇️⬇️⬇️
P.s. Yes this is the same snowsuit & hat… this is the silver lining of having a small baby… their clothes fit for longer! 💚
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.
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.
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.
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”.
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…
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.
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.
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.