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Niamh
Niamh with Mun & Dad

We found out our baby had Gastroischisis at our first scan, I was just eleven weeks pregnant at the time, but with a family history of a maternal nephew born with his bladder outside, they detected something straight away. I was asked to go for a scan at Chester hospital two weeks later with a specialist. She confirmed Gastroschisis. On hearing all this I was understandably frightened for the little life growing inside me and although I had been advised against looking the condition up on the internet, concern and my desire to feel some control over the situation got the better of me, I then discovered your website Which has been of great help to me.

We where then scanned every month until we got past 26 weeks, We were having a little girl. Then we were scanned every other week and the weeks between scans , baby was monitored via heart rate and movement monitoring.Everything was going great, her bowels could be clearly seen but still appeared to be working fine, she was growing and moving brilliantly. I had originally been advised, by my consultant, that I would not be allowed to pass 38 weeks, so as that date got closer I got more and more nervous and excited.

At 37 weeks and one day I attended for another scan, two parts of her bowels had previously been dilated, but not enough to cause concern, however now, these parts seemed larger and one of her kidneys was larger than the other. During this particular scan, my baby, who normally bounced all over the screen, lay very still, as if to highlight the issues to the consultant. I was told then, although there was no panic and everything seemed good, there was no point in leaving baby in there any longer, she was a good size and still healthly. Time to plan induction. "Dr Wants baby out within 24hrs." , the nurse told me after more tests and monitoring.

The very next day I was taken in and the induction began. I couldn't wait to get started! (If I'd of known then what I know now, maybe my excitement would have been less..... Labour hurts!!! Of course I knew it would, but no one can tell you exactly what it's like, except, it hurts!) I was given my first pessary to soften my cervix at 10.30 0n Fri 6th july 07, second at 4.30pm. The pains started at 2pm. I was then told the following day they would put me on a drip to induce me further. I had a bath
and settled for bed at 10pm, following 2 paracetamol and 2 codine tablets......

Niamh Gastroschisis wrapped in plastic

10.30PM MY WATERS BROKE.

The rest you don’t need to know, but I have to advise, If your going to be induced..... take advantage of the pain relief available, don’t be a martyr, I tried until 4am to go without, in the end after 14hrs of pain I opted for the epidural....... HEAVEN. The rest was a breeze! I got to see my baby girl enter the world at 11.10 am on Sat 7th July
and all her bowels followed her, just like a bag of sausages. They took her to the otherside of the room and wrapped her bowels in clingfilm and she was in my arms by the time they had delivered the placenta. She weighed 5lb 15oz totally perfect with lots of black hair. I held my little girl for about 2 mins and then daddy did the same. She was taken on to the Neonatal ward and stablised for transfer to Alderhey. We visited her about 45 mins later before they took her over. I had lost a lot of blood and Chester were relucant to let me follow until they where satisfied I was ok. Originally they had said 6 hours but after 3 we where allowed to leave.

At Alderhey my little girl was waiting to go down to theatre. Her bowels had been cleared and they looked so much smaller than first, but I still never thought it was possible to fit them all in her tiny tummy. At 9pm, Niamh, was taken to theatre and was back out at 11.20pm. We went up to Intensive Care to welcome her back and too our amazement lay our little girl, minus the bag of sausages (as we like to refer to it). The surgery has gone great and the surgeon has managed to get them all back in one. She had a slight hernia where he was unable to rejoin her stomach wall muscles, but said it was fine, it would either correct itself or be corrected by further surgery when she reached 2. I'd advise anyone going through this, get involved in the care of your baby. Ask the nurses what you can do, as so much of the care is removed from you, It helps to feel your doing something to help your baby. Change their nappy, do the eye and mouth care. Anything to help you feel part of that baby's life and the baby to know you.

Niamh was expected to spend up to a week in intensive care and was on a ventilator, all kinds of drips and machines beeping all round her. We could only hold her tiny hands and watch as she struggled trying to pull the lines out. It broke my heart to see her there but I knew she was in the best hands. After a day and a night on the ventilator the doctors had said to change it to some other breathing support, but while they where setting the other machine up, little Niamh was off the ventilator and breathing just fine on her own. I asked if she could be left to try on her own and it was agreed, they would monitor her closely though. That night she did just fine. So after just two days on ICU Niamh was taken back to Neo. Her TPN gave her all the nutrition she needed until about five days later (I can't be more specific than that I'm afraid it was all such a blur). We were allowed to start introducing her to my milk through her Gastro Nasal Tube. I'd been expressing since day one so was so excited.

2mls first then 5mls. Gradually they increased to 10 the next day and then 15, then 20 until we reach 25mls. Her bowels still hadn't opened but they didn’t seem concerned, the feeds where so small. When we reached 40mls we where told to go up by 5 every feed. I tried her with the breast every time limited to just 5 mins. The nurses would then top her up through the NG Tube, Until when we reached 50mls, when I asked that they didn't top her up and just called me whenever she woke I would try to feed her.

A sleeping Niamh
I was adamant I wanted to breastfeed and so followed a hard slog!!! At first Niamh wasn't interested in any type of food. Bottle, cup breast, because she had gone over a week without food she had lost that reflex. I went to the ward everytime they called and tried and tried. I was there for every feed, nappy change, bed bath. I took the role and made sure every nurse on every shift knew I wanted to be the one doing all these things. I wanted Niamh to be breastfed and I was to be called if I was away from her side whenever anything needed to be done. I wanted my daughter to know who her mum was from the minute she was awake to when she slept. This didin't mean sitting at her bedside all day and all night. BUT YOU MUST BE FIRM AND STRONG with the nurses. I kept being told I needed to rest, My attitude was if I was at home, you wouldnt be there at 2am to feed her, so I will cope. The one night I did give in and allow them to do the 2am fed, they bottle fed my daughter all my breastfeeding work was undone for at least 4 more feeds!!



Oh yummy!

All of a sudden out of nowhere, after hours and hours of sitting and trying, Niamh suddenly decided to latch on and feed! 4 days and nighs of trying and she was there. That same day she pulled her NG tube out herself!! Evertime I fed her, she took more and more, her bowels opened... and continued to open for every nappy. She somehow learnt to pass wind...... I hadn't taught her that I promise, It was after a visit from her Grandad so I blame him. I have to tell you, her bottom end often sounded like an explosion and smelt like bad drains!!!! She weighed 6lb 14oz now and was going strong!!

Niamh with friend

At age Day 11 we where allowed to bath her and dress her in something other than a baby grow!! At aged 12 days her TPN was taken off her, although the broviac line
was still in place just incase. We were also allowed to take her off the ward and stay with us in the parent accomodation across the way. On day 13, Niamh was weighed and placed on temporary discharge. She's now at home with us intil Monday when we have to take her back to Alderhey, they will weigh her and providing she hasn't lost too much weight (which is normal when TPN is taken away) or has maintained her weight, the line will be removed and our little girl will be just an outpatient for follow ups. The breastfeeding is going great, well worth the sweat and tears. She is a very contented baby, she was on the ward and she is at home. Her bowels where put back in through her belly button and she has what
looks just like her umbilical cord bit. Im advised she will have a kind of belly button.

Niamh after her operation