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.
Tags: autism, babies, Child Illnesses, children, Disability, family, Motherhood, NeoNatal, NICU, parenting, Parents, toddlers