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Elouise with silo pouch

On March 17th 2009 I had my twelve week scan of my first baby, it was then that we were told that she had Gastroschisis. Our local hospital arranged for us to go straight over to a more equipped hospital to get more information, however when we got there we just felt like they were judging our reactions to the news and they only told us what we had already been told. We were also told not to look it up on the internet as we would only find worse case scenarios, the only thing they gave us was an information sheet which was one A4 side! All I can say is thank God we did eventually look it up.

QEQM in Margate, Kent was to be our closest point of call, and where we would go every four weeks for growth scans. At our 1st appointment with a consultant there, we was told that we would have to give birth in Lewisham University Hospital, as that was the nearest hospital that specialised in bowel problems and it was 80 miles away from our home. Well if it wasn't for us going to Lewisham we would have spent the whole of my pregnancy completely beside ourselves with worry. This would have been because at our appointment at QEQM the consultant told us that gastro babies only have a 50/50 chance of surviving. They frightened the life out of me and my partner telling us that there was such a big chance our baby could die after she was born. This information however and most of the other information we were given was incorrect, as we later found out at Lewisham.

The first time we went to Lewisham wasn't until I was 19 weeks gone so we spent a lot of time not knowing anything as we only had what QEQM had told us to go by. At Lewisham they put our minds at ease, telling us they dealt with cases every week and that there is such a small chance that our baby wouldn't make it and that she shouldn't have any lasting problems and they would even make her a fake belly button. We was shown photos and told that we should look it up on the Internet.

Elouise all wired up

We were due to be induced on the 21/09/2009 only a week prior to my due date, however at a scan at QEQM at 35 weeks they told us that the bowl had dilated and part of the stomach was herniating. We went straight to Lewisham the next day to get a second opinion and they reassured us that it was pretty normal and it was nothing to worry about. We discussed with Lewisham that our date to be induced was too far away and too risky as we lived 80 miles away they agreed and bought it forward to 37 weeks.

So on the 8 the Sept 2009, my labour began. We knew we were having a little girl and her room at home and all her pretty clothes were all waiting for us but we expected this to be the slowest moving time of our lives. Through my labour not only did our baby have a Gastroschisis but she had a high heart rate and when my waters were broken she was lying in meconium and I was not dilating. After us telling the doctors we thought it was going on too long and there was a need for a c-section they agreed and on 09/09/09 Elouise Poppy was bought into the world.

Elouise's bowel was put straight into a silo bag in theatre. My partner was then allowed to see her and stay with her whilst they got her settled in NICU. She weighed 5lbs 7oz and didn't need any oxygen or sedation. I didn't get to see her until 8hrs after she was born but it was worth the wait she was absolutely gorgeous and to us so perfect. We were prepared as we could have been for what the bowel would look like and it wasn't shocking at all.

Her Gastroschisis was large and very swollen, we honestly had no idea how it was going to fit inside her, but after just a few days you could already see that it was less swollen and the surgeons come to push it down every morning. We didn't like to watch the bowel being pushed down as it looked very painful but seconds after Elouise had forgotten and was not in any other pain. The first week went past very quickly and seven days after she was born she was to have her closure operation.

Do I look cute in this?

The operation was the part that we were less prepared for as it was taking a few steps backwards for Elouise. Although everything went well with the op, when we saw Elouise she was terribly swollen and on oxygen. A few days after however, she looked like herself again. We finally got our first cuddles on the 20th Sept she was started on 3mls of expressed breast milk to begin with and we thought we were waiting for her bowels to open, however when we read back through her notes her bowels had been opening before her operation.

As her milk went up she had a couple of set backs when green stomach bile was backing into her stomach. Eventually with a lot of patience from us everything was flowing through and the amount of milk she was being given began to go up a little quicker.

Suddenly Elouise developed a very high temperature, her food was stopped and she was put into an incubator. We were told she had developed and infection from her long line (TPN). This was very common as the line flows from a baby's ankle, wrist or possibly head through to the chest. It was Elouise's third infection but the others had been caught early. Tests were done and it was confirmed she had septicaemia she was given antibiotics and within a few days luckily she was on the mend and being given milk again.

Finally at seven weeks old the day came that we were told we could take her home. I can't explain how proud you feel knowing how well and how far your baby has come, it was such a relief that she had made it through. Elouise is now 11 weeks old, she is still a little small for her age but will catch up. She loves her milk and has no lasting problems, she even has her own special belly button.