Olivia was born in November 2004 and was a chubby 8 lb. baby; she had to go to special care for some initial breathing help but was back with me the same night. We didnâ€™t hit off breastfeeding very well and by 17 days she had lost a lb. and not gained anything at all back. We were admitted to hospital, while there I expressed to show that I had more than enough milk to feed her but she just couldnâ€™t take it and was so uncomfortable. This was when she got her first NG tube. They would feed her up a little then send us home with this very cross little thing who would struggle to feed. It seemed that every time we went to clinic we were admitted.
One good thing we had was that because of her brother Jack's refluxing history we were given medication for reflux almost right away. She was given ranitidine and domperidone. She was also found to have an allergy to dairy and was put on neonate milk.
At 4 months old Olivia weighed in at 9lb 3 oz. and was yet again admitted to hospital, this time was awful. For the first week they were checking to make sure we were feeding her. Someone would stand at the door while you made bottles to count the scoops or would be around to natter at feed times to observe and then some annoying student who had no idea who would say do you want me to try as I might be able to do it.
My biggest tip is if you go to hospital and they are doing this hand the child over and let them do it. A friend told me this, she said you be mum and play but get the staff to do all feeds and let them see all vomits. It took them two days of doing this before they worked out that it wasnâ€™t us at all and that was when they started to look into bigger hospitals.
We got a permanent NG from this point, they would feed her 22 hours a day high calorie milk to try and get her to grow while talking to hospitals. We stayed in hospital for 8 weeks before coming home on NG feeds.
Due to her being so little when we saw the surgeon he recommended a fundoplication right away, Olivia was wasting away, the more food you put in the more that came out and weight was very slow growing, her red book chart was terrible not only was she not on the chart she was in the writing at the bottom. We agreed with the surgeon.
In Feb 2006 Olivia had a fundoplication surgery and a peg tube placed at the same time, she initially had some problems with an oesophageal stricture and had to go back to theatre for a dilation and was nil by mouth for 3 months afterward she had recovered we havenâ€™t looked back. She was amazing she still is. We worked with the dietician and the speech and language therapist to get Olivia eating again and now she eats wonderful.
She is 6 now and still has her peg tube but we only use it for fluid now and we hope to be able to get it taken out at some point, she eats normally and actually enjoys food. We are having problems with reflux again and she is back on 30 mg omeprazole, she will be seeing her surgeon again soon to see what the next step is. Both Olivia and Jack have Ehlers Danlos syndrome which can cause the wrap to loosen over time so I think this is what has happens it may just need tightening.
She has had to be very brave just recently as she has had her peg feeding tube changed to a button and this needs to be changed while she is awake and this is a struggle at the moment due to anxiety about medical procedures.
Poor poor girl - she is amazing.