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
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
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! 💚
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.
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.
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.
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.