In January 2016, our beautiful daughter Tilly was born at 41+4 weeks weighing 9lb 13oz at Southmead Hospital, Bristol. I had a straightforward pregnancy and spontaneously went into labour on a Friday evening. Everything was going smoothly until 4.25am when the midwife had to break my waters - she told us that my waters contained thick meconium and Tilly may need her airways suctioned when she arrives.
I started to panic, pushing with every ounce of strength I had to get Tilly out quickly and safely. She was born 20 minutes later and was put briefly on my chest while the team cleaned her down. She let out a cry and a flood of overwhelming relief spread over me. I thought everything was ok but five minutes later it was quickly apparent that something was wrong. The midwife asked my husband to press the red emergency button.
Tilly was in severe respiratory distress - she was gasping for air and her skin was a dark shade of purple. Within seconds, the neonatal intensive care unit (NICU) team of consultants and nurses rushed into the delivery room. I felt helpless as my baby girl was whisked away from me. I couldn't move or see her as I was having stitches for a second degree tear. My husband tried to reassure me that Tilly was ok and just needed a bit of help breathing. I knew from his face that something was really wrong.
The consultants were working hard trying to resuscitate Tilly. I felt like I was having an out of body experience as I was helplessly watching everything happen and there was nothing I could do to help. Everything just felt numb.
Tilly was put in an incubator and whisked away to the NICU. Once I had finished getting stitches, I was taken to a side ward away from the other new mums with their babies. I still couldn't believe what was happening. All I wanted was to cuddle my new baby, but I felt like everything had just been taken away from me. I kept asking to see her but I kept being told she wasn't ready. With every hour that went by, I convinced myself that she wasn't going to make it.
It took eight hours for the Southmead NICU team to resuscitate Tilly and make her stable. When the nurse said we could see her another wave of relief washed over me - my little fighter was ok. Walking down to NICU we were so excited we were finally get to meet and hold Tilly but nothing could have prepared us for what we were about to see. She was on a ventilator and in a medically induced coma.
She was connected to so many different tubes and wires and looked so small and fragile lying there. All I could do was burst into uncontrollable tears. It was the most heart breaking scene I have ever witnessed but the NICU nurses were so calm and empathetic.
I didn't take in much of what the nurses said as my tears would not stop falling. My husband later explained that Tilly was suffering from meconium aspiration syndrome, (MAS). This meant both of her lungs had become filled with meconium through her amniotic fluid and had stuck the lining of her lungs together. Ultimately, her lungs had collapsed, so she wasn't able to breathe at all by herself.
Tilly also had to be treated with antibiotics due to infections in her lungs, culminating in her having a lumbar puncture at three days old. I was discharged after three days on the ward and had to go home without my baby. To this day I still don't know how we physically managed to walk out of the hospital and leave Tilly there. But I knew she was receiving the best care possible and we also had her 18-month-old sister Macie at home who we needed to look after.
Tilly made good progress and after four days she came off the ventilator and was slowly bought out of her coma. It was magical to finally see her open her eyes and have our very first cuddle! We were all fingers and thumbs trying to cuddle her because she was still attached with loads of wires and oxygen but with the nurses help we soon got the hang of it.
Later that day my in-laws bought Macie to the hospital to finally meet her little sister. Macie was so gentle stroking Tilly's hands through the little windows in her incubator, telling Tilly how she was her big sister and she was going to look after her. I don't know how I had anymore tears left but they soon started rolling down my cheeks again.
It was great to finally start being hands on with Tilly rather than just sitting there listening to her monitors and checking her oxygen stats. We were taught how to feed her through her feeding tube and how to change her nappy, navigating the oxygen and wires.
At times it felt very lonely on the NICU as it was predominantly fully of premature babies but we met another couple whose baby had the same problems as Tilly. We soon became great friends and it gave us so much strength to be able to share the ups and downs with another couple who knew exactly how it felt. I honestly believe that fate brought Rach and James to us, and we are so thankful to have them as part of our lives.
Tilly continued to make good progress and moved on to high-flow oxygen therapy. Another five days went by and she was then progressed to low-flow. It was then that we were told Tilly would most likely come home still requiring oxygen. That's where Catherine, the Bliss champion came in.
We were petrified of taking Tilly home on oxygen. We felt completely overwhelmed and we were also worried about how it would affect Macie. Catherine was so lovely and supportive from the word go. She explained how the oxygen would work in the home, providing us with information leaflets to take away and read through. She also spoke to Macie and gently explained to her about the changes that were going happen which offered her reassurance. She gave us details about online support groups we could join and also a support group who met up once a month. She made the whole experience much less daunting and for the first time in weeks I felt I gained some strength and believed that we could manage a poorly baby by ourselves. Her support was valued highly and had a major positive impact on our whole family.
Two weeks later, after a four week stay in NICU, Tilly was finally allowed to come home where she belonged. She’d been discharged on oxygen and while we were nervous at first, Catherine had taught us the skills needed and we were much more confident than we would have been.
Tilly is now a happy, cheeky, flourishing one-year-old. She’s walking and getting herself into all sorts of mischief. Our NICU experience was the most horrifying time of our lives but it also made us a stronger family and gave us lifelong friends. The whole team at Southmead guided and supported us through the whole process and we will be forever grateful to them for saving our little girls life.
If you have been affected by any of the issues mentioned in this post and would like support, view our online support pages.
