Daisy was born on 25th February 2018 weighing 9lb13oz and on the 98th centile. Life as a family of 4 now began. We never knew the journey we were just about to begin.
The first night Daisy was born was when we saw our first symptoms. Daisy would projectile vomit after each bottle and scream in pain. She was really wheezy and coughing lots. The way Daisy was made me feel terrible. I felt like I was “that” mum on the ward who could not stop her baby from crying. The next day I requested we were moved to a private room just for my own comfort and to allow the others mummies and babies some rest. The paediatrician came and saw us, they didn’t seem to concerned and said she had a traumatic birth ending in c section so quite normal for babies to behave like this but put Daisy on antibiotics just in case and kept us in for 3 days.
Finally home but things hadn’t changed. Daisy was the unhappiest baby I’d ever met. She didn’t sleep, spent roughly 22hrs a day crying in pain, feeding was really tough- she would refuse the bottle, she went between constipation and diarrhea, projectile vomited every feed, had runny eyes/nose, wheezy, rapid breathing, eczema and bad painful wind. I was thinking to myself how did I make such an unhappy baby. At 2 weeks old she was still nowhere near her birth weight and kept losing weight, she also kept refusing feeds or would only take a small amount. My health visitor luckily was having weekly visits with us as she also knew something wasn’t right with Daisy. We tried all colic medicine possible with no difference seen. At 3 weeks old I went to the GP and requested gaviscon to help with the vomiting. We were then on weekly check ups with our GP so he could check in on Daisy. At the end of March (4 weeks old) was when our GP sent us up to Paediatrics at the hospital. The GP and health visitor were concerned regarding Daisy’s breathing, poor weight gain and feeding issues. The hospital didn’t seem to concerned kept us in for 24hrs, topped Daisy up with milk via NG feeding tube due to dehydration and discharged us with the advice of I have to get 3oz into her every 4hrs. This was the worst advice I could’ve been given. Have you ever had to try and force feed your baby when they are in so much pain. Most feeds it would take over an hour of myself, my partner and my mum taking it in turns just to get some milk into her. It was traumatising and stressful. I then began to suffer with post natal depression. It was tough and tiring! I had massive mum guilt over my eldest daughter too. Over the month of April I went back and forth between the health visitor, GP and hospital. We were put on Nutramigen milk, giving ranitidine and omeprazole alongside the gaviscon, flavouring the Nutramigen with Nesquik. You name it we tried it over that month. Daisy was still losing weight and beginning to become lathergic and really unwell. The first weekend in May I finally had had enough I could no longer cope like this and my daughter needed help. I went to my GP who referred me back into the Paediatrics department at the hospital. My GP and Health visitor had done all they could to help us we needed more investigations. Daisy had dropped down to the 25th Centile and they admitted us for investigations. Daisy now had complete oral aversion from the force feeding we had been doing. She now had to be fed solely through an ng tube. The hospital changed us to Neocate milk and tweaked her medication. She was finally diagnosed with CMPA and GORD. We were discharged after 8 days with the NG tube in situ using Neocate, gaviscon, ranitidine and omemprazole. After a couple of weeks we finally had a happy, settled baby who was gaining weight. During these 4 months, we also went through 2 tongue tie divisions (first one didn’t work properly).
I spent a lot of time after discharge working with SALT team and feeding specialists helping me encourage Daisy to bottle feed. At the end of June (16 weeks old) Daisy pulled her tube out one day (regularly occurrence) usually we would have it put back in the same day but something came over me and I made the decision to not put it back in. I wanted Daisy to up her bottle feeding intake and in order for her to that she needed to have the feeling of hunger and request to feed when she needed it. I’m so glad I did because it worked! She began to up her oral intake. A weight had been lifted and it felt amazing.
Now she was bottle feeding and accepting things orally we could start our weaning journey and cutting down the reflux medication. At 12months old Daisy now loves food and will eat anything put in front of her, still not keen on milk from a bottle. We have confirmed allergies to Dairy and Soya and our elimination diary is still ongoing. Daisy is still having daily reactions but we are unsure as to what. We have also cut out grapes, raisins, raspberries and almonds for the moment. Our dietician is wondering if we have some environmental allergies which is why the reactions are happening daily. Only time will tell and diaries and photos.
Things I have learnt on this journey so far;
· always trust YOUR instinct as a mummy, you just know.
· Do your own research and go armed with it. The health professionals don’t always know everything.
· Keep diaries, photos and videos of anything you may need because most appointments the baby somehow falls asleep and they think you are exaggerating things.
· Don’t try and do it alone. It’s one of the hardest journeys I’ve been on and could not of done it without help and support from family and my health visitor.
· If you don’t agree with a medical professional do say so. They are open to your opinions. I’ve learnt over the months you do need to make your voice heard if you want/need something.
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