Maebh’s Journey 2018 - now
Here we are, four and a half years later, and Maebh is loving life. Her little sassy, diva-like ways keep us on our toes but we wouldn’t change her for anything. I mean, it’s been far from an easy ride; we still fight constantly for things she needs. However, in herself Maebh is a lot healthier and happier than in previous years.
By October 2018, when Maebh was coming up to 10 months old, we had been saying for some time that we felt she didn’t need her oxygen support (0.5l) any more. Again, her consultant was adamant that she did, as most Edwards’ babies struggle to sustain their oxygen levels. Well, being the defiant parents we always have been and questioning everything anyone has ever said, we decided to try her without her oxygen, cautiously…
On Halloween 2018 Maebh had her first full day and night of being oxygen-free. We barely slept a wink that night, but she was attached to a sats monitor and had an apnoea monitor on her nappy. She slept soundly. So that was it. We fought yet again to get a second opinion from a specialist at our local children’s hospital. Then, whilst waiting for this appointment to come through, to our surprise we received a call from our consultant to attend a meeting with him. He apologised! Not just from himself but on behalf of his fellow colleagues at the hospital who, from the outset, had not given Maebh much hope. He thanked us for being such great parents and questioning every decision the hospital made. This was the turning point for us; having a team of professionals who could see our daughter the way we had seen her for the past twelve-months- plus made our lives a lot easier.
Maebh has always struggled with her weight. Often in the earlier days she sicked up all the milk that she had had via her NG tube. She had severe reflux, constipation, and all that goes along with digestive problems. We made the decision to put Maebh forward for gastrostomy surgery. Again, me being me, I had done a lot of research on gaining weight and what to do help symptoms of reflux, and I came across the idea of a blended diet. Four weeks before her surgery was scheduled, I tried an Ella’s Kitchen banana pouch, syringing it very slowly down her NG tube. Much to our dietician’s disgust, I proceeded with this because this was the longest period in Maebh’s eighteen months of life that she had not vomited. Soooo, that was it, more research, more food, more blends She was tolerating it! She wasn’t being sick! She seemed more alert! She had more colour in her little cheeks! Gastrostomy surgery done, blended diet here we come. We’ve never looked back. Maebh now has all the food we do and more: cake, cream, Christmas lunch, steak. Anything that can be blended, we will feed to Maebh.
Maebh has gone from strength to strength. She still is only 8.9kg in weight and 76cm in height but she is the sassiest diva I’ve ever met. She has such an infectious smile and will brighten up even the darkest of rooms. Everyone who meets her instantly falls in love with her; she gives so much back to life and has so much life in her little bones.
Maebh has two birthdays a year. Some may say we are crazy, but, when you’ve been dealt the cards we have, and been told your baby won’t survive 6 weeks, why not? We celebrated her six-month birthday with a garden party at her Nan’s, and her first birthday was the biggest first birthday party I’ve ever been to. Every year since we’ve had two parties. For her eighteen-month celebration we went to our local zoo, and I got permission to spread wildflower seeds on a patch of land by the lion enclosure. All of our close friends came with us, and all spread some seeds in honour of all our angel and living babies and children.
Maebh has just started in the reception class in a special school. She absolutely loves it! She loves the attention she gets from the teachers; she loves the attention from the other children, and the interaction has completely changed her. She is learning more and more each passing week. She is very expressive and responsive. She anticipates, she is vocal, and she communicates likes and dislikes. Her personality is growing and beaming. She has several pieces of physiotherapy equipment at school, one of which is a walker. She loves being in this, and has progressed from showing no interest at all in walking to motoring up and down the long corridors twice a day. The aim is that she will, in the near future, be able to walk unaided. or at least with minimal support.
If there’s one thing I could pass on to all the expectant parents, or the parents of a new-born baby with this diagnosis, it’s Never Give Up! Never give up hope, never give up wanting the best for your child, never doubt what your child is capable of.