Our biggest challenge yet..

I breastfed my other two babies and introduced formula/bottles later on but in those early days of motherhood I was one of those lucky mums who had no trouble breastfeeding and it all went very well. Feeding Maisie couldn’t have been more different. A poor latch due to her Down Syndrome diagnosis as well as a big hole in her heart which caused Maisie to tire easily resulted in poor feeding so she wasn’t putting on enough weight. I had started to pump whilst in hospital and continued this as well as breastfeeding for three long weeks. Exhaustion took over and when I made the decision to stop, it was a big relief and anyway Maisie would be much better off with a mum who could function! 

Now Maisie was being bottle fed, although it freed up a lot of my time it meant I could see what her milk intake was..and it wasn’t enough. I remember feeling like I had failed Maisie when informed that she would be admitted to hospital to have a feeding tube inserted. We had been told to expect this but it didn’t stop those feelings of failure. Feeding a baby is such a natural thing to do, yet in this instance it was taken away from me which was difficult to accept. 

So an Ng tube was inserted at 5 weeks old and this picture sums up our lives for the next few months. Although this photo is post surgery and shows Maisie to be awake and happy. Prior to surgery Maisie would fall asleep whilst being tube fed. She was put on a high calorie formula in order to assist with weight gain (she needed to be 5kg for surgery to go ahead)and we had to feed her every three hours. Each feed would take up to an hour as it had to be fed slowly, otherwise Maisie would vomit. Despite slowing the feed she would still vomit and it became a joyless activity. We got a bit of respite at night as she was asleep and usually kept her milk down. But my husband and I were both exhausted and at times we felt at breaking point. It was relentless and surgery seemed so far away especially at our weekly weigh ins when Maisie might only have put on 30grams. I wanted to burn the chair we sat on to feed her I was so fed up sitting there all the time! I remember when we holidayed that summer we were able to hook her up in the car for her feed and drive to the beach, which saved us having to sit for that feed. Those little things made a big difference. Maisie continued to be tube fed after her surgery as her suck didn’t return. But with persistence and patience (and help from our team at Crumlin hospital)she managed to suck again and at 9 months old we said goodbye and good riddance to the tube. She was pulling it out all the time now she was older so it couldn’t have come at a better time. Maisie is thriving since her open heart surgery and loves her food, she eats anything I put in front of her and wants to eat our food if she sees us eating! We couldn’t be prouder of her and my advice to anyone going through something similar is to seek support whether that’s from family members or from your cardiologist or medical team or from a charity such as Jack & Jill if you are really struggling. Those feeding days were long and sometimes a bit bleak but having come through that difficult period I see it for what it was..our baby needed open heart surgery and for it to be successful she needed to be fed this way.