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
Mental health really is a minefield. I wrote just a week or so ago about how I was feeling really content and at ease with everything in my life. Today, I feel the opposite.
I know getting a good amount of sleep has a lot to do with how well your brain can cope, and I’ll admit to really struggling with sleep recently, but surely that can’t be the main reason for having such hard days?
With anxiety disorder i’ve found that there are certain triggers that can send me on a path towards self-destruction and normally I can avoid those triggers completely. But someone… anyone… please tell me how I can avoid my son???
Matthews birth was such a traumatic time in our lives and despite seeing a counsellor and talking through our thoughts and feelings about the entire process, there are still moments when I feel completely overwhelmed and right back in that NICU.
Yesterday I was making an attempt at cleaning out the files on my computer when I came across an album full of Matthews NICU photographs and videos, as well as a slideshow I made for his 1st birthday.
It broke me.
You think you’re over the worst of it and then 2 and a half years later it hits you, like a freight train.
I’ve been battling with my inner demons about this for the past 2 years and even told you all about asking my GP for help, which I did.
But sometimes the medication isn’t enough. Sometimes the hours of counselling aren’t enough. Sometimes you’re just going to feel it all over again and there’s nothing you can do to stop it.
That’s how I feel right now.
I’m sure, or rather I’m hopeful that tomorrow will be better, but today all I can hear is alarm bells ringing. I can smell latex gloves and sterile hand sanitizer. In my peripheral vision I can see coloured screens with oxygen levels rising and falling. I can feel the delicate thin skin of my baby in my hands and I can’t stop it.
This is PTSD.
It’s a no brainer that there is a right and wrong way to speak to another human being. The quote “in a world where you can be anything, be kind” always comes to the forefront of my mind when I think about this topic.
However, there are people who have absolutely no filter and are unable to see the error of their ways especially when it comes to speaking to someone about their child.
Don’t get me wrong, I am very much an “honesty is the best policy” kind of person, but not if its rude or downright cruel.
So on that basis, as a mum of a NICU baby, I have compiled a list of the big NO NO’s when it comes to conversing with a parent like me:
- “Oh yeah you can tell he was a preemie” – Seriously… like freakin seriously??? Why would you ever say this? Yes I understand that because my baby was very early that he looks different to the average full term baby, but you are basically calling my son ugly in the most underhanded but obvious way!
- “You should really try and expose him to germs, it’ll make him stronger in the long run” – This one is an old favourite and by far the most frequently heard nonsense for me. Firstly, this is factually incorrect. My son was a very medically fragile little baby. Any exposure to the common cold, for example, could quite simply have killed him. Now I’m not being dramatic when I say that… I truly mean it when I say he could have died from the cold. You are not a medical professional and if you are then you really need to go back to school. Yes preemie parents are very overprotective of their babies, maybe more than required. But this is simply because we have watched them face death on a sometimes daily basis within the NICU. Let us be the parents and trust us when we tell you this.
- “He’ll be fine” – This is quite a broad expression but it covers a multitude of ignorance. No he won’t always be fine. Yes, my boy overcame a lot of the hurdles that were thrown at him, but there is simply nothing worse than hearing the nonchalant tone of this phrase being thrown at you when you express any worry you have about your child. I know sometimes that it’s well meaning, but let me tell you, it’s really NOT helpful.
- “At least he’s here” – Now this is a tricky one, because YES in the grand scheme of things we can at least hold on to that fact. But when you’re pouring your heart out to somebody over the pain and heartache you’re going through watching your beautiful baby struggle for life, this is the last thing you want to hear. For me the reason is quite simple. There were so many times I thought we would lose him, and on some of those occasions, we, his parents, were in charge of making that decision. Nobody wants to see their baby suffer and we were asked on so many occasions whether we wanted to continue care. So saying this doesn’t help… at all!
- “He’s home now so you can relax” – No… Just no!!! The nightmare of the NICU doesn’t just end when they’re discharged. They are simply passed over to you, their parents, to keep them alive. Matthew came home on Oxygen, which he was hooked up to 24 hours a day. He was also referred to SEVERAL different clinics, which 2 years later we still attend. He is still a medically vulnerable child, classed as disabled by law, and even in the cases where the child has no other serious illnesses, the NICU nightmare never leaves you. I have been officially diagnosed with Anxiety and PTSD. I don’t sleep and I hear every noise my child makes. Every time he coughs, my anxiety levels reach maximum. I am constantly worried about everything he does, eats, drinks… everything. It never leaves you.
So that’s just a few of the absolute worst things to say to a NICU parent. It really isn’t rocket science, and like I said before I do understand that a lot of these comments aren’t intended to be malicious in any way. I just urge anyone who knows someone going through this to really think long and hard about what you say. It can really make or break someone’s day without you even realising it. If you’re really struggling just offer a sympathetic ear… ask if there’s anything you can do… assure that person that you are there for them. That’s all they need to hear.
“If you propose to speak always ask yourself: is it true, is it necessary, is it kind.” Buddha
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.
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.
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.
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.
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.
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.
He suffers from some Sensory issues and is in fact in the early stages of an Autism diagnosis.
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.
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.
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.
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.
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.