F's medical history.

F, my beautiful little trouble maker. He was born at 35 weeks be emergency c section due to foetal distress, prom and sepsis.

He was a good weight but very poorly, he was 6lb 10oz the biggest baby in intensive care but the sickest. He wasn’t breathing on his own and we don’t know how long he was like this for, he was put straight onto a ventilator on high setting at one point a 100% oxygen and still not adequate. He was given two doses of surfactant to try and help his lungs to move. They called this respiratory distress syndrome and told us that we should come and see him.

He was on the ventilator for three days and then oxygen for another day and then nothing my super-duper baby. This time our consultant presumed reflux so they took feeds slowly. After 2 weeks he was able to feed from a bottle so his feeding tube was taken out and we were able to take him home.
5 days after coming home I found F blue and not breathing in bed, we rang 999 and got him to hospital it was then that they said it could have been an ALTE (apparent life threatening event) and in our case probably caused by reflux. Our consultant gave us omeprazole and domperidone right away and when he seemed to be choking on feeds gave us thickener.

F continued to choke on feeds and get chest infections but it was only when he caught bronchiolitis at Christmas was this taken seriously, they gave him a NG tube and we took him home. The speech and language therapist withdrew all of F's oral feeds to try and stop him aspirating on his feeds which has made a big difference but F also seems to be aspirating on both saliva and reflux contents. So we are seeing a surgeon later this month to see what the best course of action is, it might be that he needs a fundoplication surgery. We are also waiting on our consultant to see if they can find something that will stop him producing so much saliva.

F is currently fed for 15 hours through the day as we don’t feed overnight with an NG tube in case he vomits and chokes. He has very little gag reflex and seems to be behind in his developmental milestones and has been suggested that it could be neurological, a result from his rough start to life.

F has now had surgery and is doing really well from reflux point of view but is struggling with his development.

O's history. again will probably need updating.

O 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 didn’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 couldn’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 j'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 neocate milk.

At 4 months old O 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 wasn’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, O 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 O 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 haven’t looked back. She was amazing she still is. We worked with the dietician and the speech and language therapist to get O 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 O and j 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.

j's history, wrote in 2010 so will be updated at some point.

J was born in March 02 and from the first week we had sick, we were told this was normal and all babies were sick. When he was 5 weeks old he was sick and seemed to choke, his lips when blue and we rushed to the hospital. This is when someone mentioned reflux; they sent us home with infant gaviscon and thickener which these days aren’t supposed to be given together. (They both thicken so shouldn’t be used together).

These made little difference to our life, j was miserable and we were miserable and our paediatrician at the time kept telling me that he was fine as he was gaining weight and that reflux was a social problem that affected me more than him. We spent the day holding him upright and hoping he would settle. The doctors would tell my health visitor that I was anxious, I was young.

As luck would have it at 7 months out doctor left on maternity leave and we got our amazing doctor that we still have today. I explained to her that we had been made feel that we couldn’t cope with our own child because people kept saying its normal. She checked him over and found a heart murmur that turned out to be innocent but the other doctor hadn’t said anything.

She referred j to Leeds hospital where they would do some tests to see how bad his reflux was and she also gave us ranitidine to try in the meantime.J went into Leeds and had a ph. study and an endoscopy which shows that he had quite significant reflux that wasn’t being controlled; they recommended that we start omeprazole and also a low dose of erythromycin.

We slowly over time increased this dose to what was considered maximum and when he still hadn’t outgrown reflux at 2 the doctor suggested we would repeat the reflux tests to see if there had been any improvements, also because sadly over time the constant vomiting had taken its toll on j's eating. He would refuse food because he knew it would make him vomit.

After the test it showed the start of irritation to his oesophagus (esophagitis) and also showed that his reflux hadn’t got any better in fact showed worse. With the surgeons we decided that the best way forward was to have Nissans fundoplication done and a gastrostomy feeding tube placed.
J had the surgery in September 2004 and for us the surgery was life changing. J hasn’t refluxed since, sadly because of his oral aversions from being sick he still doesn’t eat very well now and is still fed via a gastrostomy tube. We however live in hope that he will eventually be able to get off the feeding tube.

It is rare that children with reflux don’t grow out of it by j's age and just recently j and my daughter O have been diagnosed with a genetic condition called Ehlers Danlos syndrome which can cause the sphincter muscle as the top of the stomach to stay floppy which can attribute to reflux. J also has ADHD and anxiety; although these aren’t related to reflux they could be part of the reason for him not eating. We did try for a year to tube wean and actually stopped all feeds but j stopped growing completely and soon had faltering growth again so we had to put him back on full feeds.

welcome

I want to welcome you to my family. we are slightly dysfunctional but i think that works for us. my long sufferring husband J and i have been together for 16 years so far. we have three children, J, O and F. we also have two dogs and a tortoise called t-rex. thats the mum part of the name, i am a community nurse. i am currently changing jobs to work for an enteral feeding company. this is in addition to all the nursing experience that i get at home while juggling the children. all three children have additional needs that require specialist care and are the reason that i eventually took the brave step into nursing. i am also a huge doctor who geek, Harry Potter and sherlock which finishes off the title name. i hope that i will post regularly here and keep you updated with life of being a mum, nurse and a geek.