The Bliss Champions are unsung heroes” – Simon’s story.

Little did they know that when Simon and Gen’s baby, Jacob, was born prematurely, it would start a long journey in the NICU. During this time, Simon says the visits from Bliss Champion volunteers massively helped build their confidence and resilience.

Jacob was born at 25 weeks, four and four days, with what we are led to believe was due to an infection. When labor started, my partner Gen was rushed from Lincoln County Hospital to Hull Royal Infirmary, where we were told Jacob would need specialist treatment because of his size. Gen had managed to hang around for two more days before Jacob arrived, but he wasn’t prepared to wait any longer! I had spent the last 54 hours awake and running solely on su, gar, caffeine, and adrenaline.

The night he was born, I had plucked up the courage to book into a hotel and get some sleep, but Jacob decided otherwise. After a shower and a quick two-hour £90 nap, I got a call. “Come quickly; he’s coming!” When I got there, the labor room was full of people, doctors, midwives, specialists,d surgeons; you name it.

With that, he was out. This tiny human, skin and bones, no life, no noise, no bigger than my hand, flew away before my eyes. My worst nightmare was right before me. He was taken over to the small incubator bed where four doctors worked on him for what seemed like forever, doing my best not to listen to the comments “No response,” “low heart rate,” “come on baby, wake up.”

I forced myself to focus all my antennas also far from ok. Finally, I got a call to come and say hello, and there he was. He weighed 850 grams and was connected to machines. The doctor said, “It’s ok; you can touch him.” I felt absolute fear and terror that I would hurt him if I did. I held his hand briefly and, tearfully, said, “Hi, son, I’m your father.” His entire palm and fingers only spanned my nail. Then suddenly, he was rushed to the NICU to be stabilized, and I was told I could visit him “later.”

I was left with Gen, but she was also having problems. The infection that caused Jacob’s birth had taken hold, and the placenta was now stuck on top of that. She needed surgery as soon as possible. I was then alone in the study with my thoughts and feelings. What do I do now? Where is everybody? How are they both? Just absolute fear coursed through me! Not too long after, the midwife came to tell me that Gen had lost a lot of blood. Fortunately, everything was ok, and she was soon back with me. Sle, ep quickly, but safely.

About four hours after Gen’s surgery, I was taken to the intensive care unit, “red room,” the neonatal unit. The midwife showed me around the ward, so I felt safe and confident. She introduced me to the nurse who looked after Jacob. The emotions took over, and the tears, fear, sadness, and worry burst forth. Her presence, calm and caring aura washed over me, and I knew everything would be ok. The Power of a Neonatal Nurse! She hugged me and said, “Okay, let’s introduce you to your boy.”

Within minutes she had told me what every wire, pipe, flashing light, and noise was for and why he was bathed in a warm blue glow. The phrase she used that I still use to this day to other parents is, “This is going to be a complete roller coaster ride; he (Jacob) will do well one day, and then he won’t, two steps forward and one step back. ” I spent another,r three or four days sleeping on the floor of Gen’s room while she recovered from surgery, popping in and out of the wards and seeing my little boy. Then the journey began; we were parents… three months before we were supposed, with; a web we couldn’t even hold.

We got a room on the ward so we could be near Jacob. Living two hours away from the hospital would be a problem, but the needs must be. The nurses were more than happy about the visits at 2 am to see him when neither Gen nor I could sleep—sitting for hours just watching him breathe or wag his tongue. The fan pumps away, the drip lines beep, and the heart rate monitors bounce back and forth. If we had questions, the nurses had the answers. Not only did they take care of Jacob, but they also knew how to take care of the parents. I can’t explain how much the nurses and doctors helped by being themselves.

After a few days, we were introduced to the Bliss Champion volunteers who visited every week. They were a couple who had gone through a very similar neonatal journey. This helped us tremendously, talking to a real mom, a real dad, someone who knew how you felt and wasn’t just a medical superhero with jargon to match. They gave us their phone numbers, advising us they were there if we needed to talk anytime. They suggested that we join the same Facebook support groups that had helped them and to “make sure you take pictures and record it all so you can tell your story to him when he’s older,” which I have largely not stopped.

We were also shown all the Bliss information and support, leaflets, and a notice board on the wall about what Bliss does and how they are there to help. Every week we would see these smiley faces from across the ward checking in to see how all the mums, dads, and babies were doing and if we needed anything. Bliss Champions are unsung heroes who give up their time to help others in need.

It took two weeks to hold Jacob, and even then, so much care was needed, and still attached to the machines, unable to wander around and caress him like you should be able to with a newborn. However, that feeling will never leave me. His little hands gripped Mom and me, holding tight, and he opened his eyes and looked at her face.

Over the next 15 weeks, Jacob was diagnosed with numerous problems. He had a grade three bleed on the brain, a hole in the heart, chronic lung disease, two hernias, Necrotising Enterocolitis (NEC) in the gut, and Retinopathy of Prematurity (ROP) in the eyes. Each one needs individual care and attention. After five or six weeks, Jacob returned to Lincoln County Hospital, where his care continued from an equally fantastic team. Nurses and doctors are true heroes in my eyes. And again, a Bliss Champion volunteer who was ready to lend an ear when we needed it. Wonderful people.

In the end, Jacob cleared his brain bleed, NEC, and hole in the heart all by himself; he just needed a little more help with the other ailments. A three-day trip to Nottingham at three months old to see his ROP with laser eye surgery (this is a story in itself, it was an absolute nightmare three days!) and then a two-day stop at Sheffield Children’s Hospital for hernia repair. Jacob eventually left Lincoln after 106 days of care to go home on oxygen, join his family, and start our journey as a proper family.

If it weren’t for the nurses and the Bliss family, we wouldn’t be where we are today. The dedication, love, and care have shown to Jacob and us as parents gave us the confidence we needed to get through. There is no way to thank them all except to say from the bottom of our hearts how grateful we are to all of you!

I would also like to thank the company I work for, who were equally caring and understanding during this difficult time. Western Power Distribution management and HR were helpful to Gen and me, reassuring and constantly in touch with me until I was ready to return to work.

Jacob is now three years old and a proper toddler, full of laughter and love. He has shocked and surprised us all with how he has taken the last few years in his stride. From a tiny little thing to an absolute food monster that would do pretty much anything for cake! I’m sure he will have many more obstacles in life, but I can say that angels watched over him during his time in the hospital.