Why Mother’s Day will always be extra special
I had a healthy, normal, straightforward pregnancy until 25+4 weeks when things started to feel odd. Following a routine midwife appointment, we were sent to the day unit. After a quick examination, and a funny look on the doctor's face, I can still hear the words: ‘You are 2cm dilated.’ From there on, it’s all a blur! I was blue-lighted to Queen Alexandra hospital in Portsmouth where our son, Marlo, was born at 26 weeks.
Amazing progress
Marlo weighed 2lb 1oz (947g) and was 34cm (13.4in) long. He was ventilated, but otherwise doing very well for a baby of his gestation. For three weeks Marlo did amazingly well: he was showing his cheeky, strong-willed personality already by extubating himself and pulling out his long line. ‘I don't need these,’ he told us. He smashed his way through BiPAP (bi-level positive airways pressure), CPAP (continuous positive airways pressure), and was doing well on low-flow oxygen, and enjoying breastmilk via his OG (orogastric) tube.
Shock and surgery
But on Christmas Day we got an early morning phone call to come quickly. Marlo had suddenly become very poorly, very quickly. We didn't know what to expect when we got there, but the image of my poor teeny baby's huge, distended abdomen, and seeing him ventilated again, with 100% oxygen and nitric, and on an oscillator, is a sight that will remain ingrained on my mind forever. ‘We don't know if we can bring him back from this,’ the doctors told us. Our little pickle was extremely septic and we were told to prepare for him to not survive the transfer to Princess Anne hospital, Southampton.
Marlo had life-saving surgery. He had a volvulus (twisted intestine) and had to have 75% of his small intestine removed, and his abdomen left open. At that moment, his future was very unclear. A few unstable, hazy days passed, then Marlo had further surgery to form a stoma. Just nine days later our superhero was back on low-flow oxygen, in his cute tiny clothes, and we were having precious cuddles again!
Our NICU journey was during Covid. This made things that much harder to cope with. We were both only able to be with our baby together for a one-hour time slot each day. No visitors were allowed. Luckily we were living at the amazing Ronald McDonald house, so we were close to our boy.
One step forward, three steps back
Marlo continued to fight and grow well. He had heart surgery to close his PDA (patent ductus arteriosus) valve, which unfortunately came with a broken rib and some very dramatic single-digit desaturations. But he fought hard, and before long he made his way to special care… which didn't last long. On that same day our poor pickle got sepsis again. It was an infection from his long line. Marlo had Short Bowel Syndrome because of the volvulus. He was heavily reliant on TPN (total parenteral nutrition) which was given through the long line. His stoma output was becoming too much and he was on very little milk, so the decision was made to take the long line out. On Valentine’s Day he had more surgery to reverse the stoma.
We had many many lows, but also some lovely little high moments: Marlo’s first bath; a few tries at breastfeeding, coming off oxygen; and meeting some life-long friends, who we still meet up with regularly. It's amazing to watch our warriors grow up together, and understand what we all went through to be here today.
Happy homecoming at last
Marlo’s due date came and went in the NICU. He celebrated his 100-day birthday and then finally, at 113 days old, he went outside for the first time and met his grandparents. After 115 days, on Mothers Day 2022, our superhero came home!
Marlo came home on oxygen, which he quickly weaned off, and on a special formula that his tummy could handle. After not knowing what his quality of life would be like, Marlo defied all odds – he is now a very healthy, happy, cheeky 10kg (22lb) one-year-old! He is meeting all of his milestones, and loves his food. It's incredible to think after everything he went through the only thing to happen is Marlo can't tolerate dairy – that's it! He is under a few teams still; gastro just once a year, neonatal follow-ups of course, and surgical because he has a hernia from all of the surgeries. It will need fixing one day, but when he is much bigger and even stronger.
Last Mother’s Day will never be beaten! After 115 days, we left the hospital first thing in the morning and were met by eager family members ready for those long-awaited cuddles. We’re so excited to mark this Mother’s Day with his one-year-at-home anniversary. I will hold him that extra bit tighter and longer, and reflect on what a beautiful year we have had with our baby home.
Thanks to Beth White for sharing Marlo’s story for Mother’s Day 2023