Wilf’s Story

We’d been turned away from hospital 3 times. I was 29 weeks and 5 days pregnant, in labour and no one believed me. We came home from the final, ‘go home, take paracetamol and rest’ hospital visit, and I had the best night’s sleep of my life! I think the pain killers I had been given for my ‘growing pains’ really worked.

The following day we rushed to hospital, they still didn’t believe me until my waters broke in the waiting room, Wilf was born 40 minutes later. Life changed.

I remember my waters breaking was the weirdest feeling, relief and terror combined. I became a pin cushion… steroids, cannula etc.

The labour was very quick, scary, and just like that he was whisked away. Paul went with him to NICU, I was left in the room… for approximately 3 hours on my own. No possessions or idea what was going on. I showered and wrapped myself in a towel waiting for someone to come find me. I was so terrified I couldn’t leave the room, no clean clothes, an empty tummy and no idea where my baby was or if he was alive.

I met NICU with a bang. The sight of Wilf and the noises will always haunt me, I couldn’t believe what was going on. I had only just got used to being pregnant, let alone have a baby in NICU. They let me stay on a pre labour ward for three nights, I refused to leave the hospital. However, the reality of being surrounded by mums complaining about being overdue was too much, how dare they complain! I would have done anything to be their situation.

One of my worst memories was walking into NICU and seeing a blue plastic sheet over Wilf in the incubator and a bloody arm poking out- I lost it, completely. I thought he had died and was waiting to be taken of the unit. Turns out he was having a longline fitted as he wasn’t tolerating feeding, totally normal in NICU but for someone who the reality hasn’t fully sunk in yet it was pure fear that I’d lost a baby who’s face I hadn’t even seen. (He was on CPAP and under UV with googles on)

‘Has your milk come in yet’ the question on all the nurse’s lips, ‘nope’ Back massaging my boobs praying and crying for milk to come. It finally came but trying to catch it into a tiny syringe was like a losing battle. Hysterical over one lost drop knowing that was one less drop for him.

The expressing room…the sound of the expressing machine will haunt me FOREVER! Every 2-3 hours 24 hours a day, for 10 weeks. I say I had milk, I did. But not as much as I needed. I’d watch ladies leave the room with bottles full of milk (I secretly hated them; the jealousy was so real!). The most I ever got was 70ml in an hour. I spoke to none for the first few weeks and cried behind a curtain.

At home expressing, was just as bad! The alarm is set every 3 hours through the night to express milk for the next day. Those nights spent on the sofa alone were some of my darkest times. ‘Look at pictures of your baby to promote the milk’ I could not make that work for me. I’d look at the pictures of him and totally breakdown. He was in hospital, in an incubator fighting for his life and I was sitting on the sofa with a machine trying to feed him, empty, blaming and hating myself for what I had done to him. The expressing was constant but also gave me a routine and a purpose, which would not have been possible without Paul and the nurses support (especially Kate) who are truly magical.

That was 10 weeks, 10 long weeks of very little sleep. Wilf was in NICU for 5 weeks and special care for 5 weeks. Days on the unit are long, waiting for the ward round, waiting for updates, having a meltdown about brain bleeds, breathing issues, NEC, nil by mouth and as much skin to skin as I could. We read to him every day, it felt weird to start with but on the days we couldn’t hold him it was the only way we could think of to comfort him. The nights are the long, thinking constantly about your baby, what is happening on the unit and waiting to go back in the next day.

We finally went to room 3, this meant home time. After a few trips to John Lewis with public breakdowns, we now owned more baby things than we knew what to do with, we were sort of ready. I’d imagined how amazing these shopping trips and the nesting would be the reality was very different.

Pure fear blended with a weird excitement. No alarms, no beeping, no incredible nurses to ask the same questions on repeat. ‘what is it like when you go home?’ ‘do you think we’ll be ok?’ … the list was long! I’d planned to leave for 10 weeks and now I wanted to stay more than ever. Going home is a very different experience when you’ve had a long hospital stay, the hospital becomes home and safe.

The environment change for us all was huge. We were at home and finally a family, yet we craved being back on the unit with the support, light and the noise. I used to go back all the time, to see the nurses, take them treats but the reality was I had nowhere else to go, my PTSD was kicking in so being somewhere familiar without having to talk to friends and family was easy.

Our two-year battle with food intolerances and breathing problems began.

Wilf couldn’t sleep, unless he was up right snuggled into someone’s chest. We did shifts in the night 8pm-2am and 2am-8am!

I went to the GP so many times, sometimes it was daily. Wilf had been put on a formula to top up due to my lack of milk. Turns out he was intolerant to cows milk which was causing him so much discomfort. Severely constipated and a hernia from his tummy button. He was put on Nutramigen at the last minute and it saved us both. The expressing machine was in the charity shop by this point, I’d figured our health (mentally and physically) was more important than breast milk.

Wilf is now 2 and we still don’t sleep. I can’t listen to him cry, it turns my stomach. One night when Wilf was still in hospital, my phone rang. To see the hospital calling in the middle of the night was not good, that feeling of seeing that number can’t be put into words. Anyway, they had run out of my milk, not hard considering the daily dripple that came out of my boobs! I grabbed the nights milk and got a taxi to the hospital. I walked down the corridor, it must have been around 2am and into special care, there he was alone and crying his little heart out. My heart broke and so did I. As I was settling him, I promised him that he would never EVER cry alone at night when we finally made it out of here.

The feeling of that night haunts me and the promise I made him means I can’t let him cry and we welcome him into our bed, something I vowed I’d never do. I’m the one crying from exhaustion and praying that one day we will all sleep again but also enjoying every single second, every cuddle and the feeling that I can help him feel comfortable in a way I couldn’t in hospital.

The breathing… I have never been friends with a doctor’s surgery receptionist before Sarah came into my life. She is one of the magical people you meet when you’ve had a ‘different’ experience with a baby. Wilf sounded and looked like an old man, who couldn’t breathe. Terrifying.

It started just after we got home from hospital. I couldn’t tell you how many times I went to the GP or how many hospital admissions we had during the last two years.

One evening whilst I was up feeding, I turned to Dr Google- a general no go but there was no one left to ask! Wilf had a birthmark on the back of his neck, according to Dr Google you can also have these in the airway. Early the next morning I went to the GP (again) and told him… I can laugh about it now…BUT… the GP told me it wasn’t possible; he was a prem baby, had a loose larynx and was a happy wheezer. A happy wheezer?! No one was happy about it! I had heard that so many times, I lost my cool so badly, but I finally had a referral. The consultant we saw (after many checks) confirmed I was right and asked why no one had referred us earlier?! Long story short, Wilf had a growth in his airway which blocked approx. 40%. A basic cold would mean 2-3 nights in hospital. I still have a hospital bag packed ready to go.

Because we were so terrified of him getting ill, we isolated. I was on mat leave like a paranoid hermit, not what I imagined!

I struggled mentally, big time. I couldn’t process what was happening. I was hit wave after wave of things with Wilf- the lack of support pre labour, being left in that room, seeing Wilf with a blue sheet on him, feeding issues, brain bleeds, NEC scares and then leaving the unit and issues that followed. The support at the hospital was brilliant, they knew I needed it and so did I. I went to weekly therapy sessions whilst we were in hospital, then home visits as I struggled to bond with Wilf and finally EMDR which was the best thing I’ve ever done, for PTSD it is amazing. It gave me a way to work through trauma and be able to talk about what happened with friends and family which helped them understand our reality and why we couldn’t go to packed pubs for lunch, baby groups or big family gatherings.

My thoughts to help others- Do therapy, EMDR changed my life. Talk to friends and family when you are ready- be honest. Trust your instinct. You may feel like you’re completely helpless- trust your mother’s intuition it will guide you and the medical team. There are some amazing IG pages building communities to help, follow them and interact when you feel ready.

Prem babes are born fighters and the strongest little people you’ll ever meet so are the parents!

An A&E consultant told me on one of our many admissions that a NICU mum is wired differently- your patience, strength, and intuition are truly incredible. I always think about what she said when I feel low or I’ve had a difficult time with Wilf.