Ryley had perfect Apgars when he was born on October 3 2006 (I was induced at 39 weeks as I had pre-eclampsia), though he wasn't interested in feeding and didn't cry during the first night at all - so I called the midwife in, who gave him some formula in a syringe (we couldn't get anymore out of me) but he really wasn't interested. The next morning, he still wasn't really feeding well, so the midwives were trying to help, and still nothing happened. Then when we were changing his nappy (he hadn't passed the meconium plug) he vomited up a green bile, so immediately the Paediatrician was called in (we found out later he suspected Hirschsprungs Disease, which is a disease of the bowel where the nerve endings or ganglion cells don't develop properly, meaning that stool cannot be passed through the bowel) and he sent Ryley for an Xray. This showed a blockage in his bowel so they took him to the Special Care Unit (that was sad enough to see- my baby placed in an incubator and I couldn't hold him) and then they transferred him to Monash NICU in the NETS ambulance. This was 18 hours after birth.
It was all so distressing - of course you have pregnancy hormones going berserk and nothing is going as planned. I had never been to hospital before and had been looking forward to the whole experience, and I had certainly never been in an ambulance. So the first time was when Ryley was transferred to Monash. They didn't have a bed for me there though so I still had to go back to The Angliss at night - that lasted one night then I checked myself out. I couldn't stand being in a ward where there were 3 other new mums enjoying their babies - I spent the whole night crying.
Anyway, at Monash, they continued to run tests and tried to relieve the blockage, but nothing much was happening. Finally 3 days after birth his tummy blew up and they took him for another Xray which showed that his large bowel had ruptured. So they rushed him into surgery (they couldn't even wait for us to get there). They also said if he was at the original hospital or at home with us, he would've died. Very confronting to hear! It was a horrible experience, as we didn't know whether he'd pull through the op. I kept trying to imagine my little baby in a very serious operation - how did he know that life was worth living? And we didn't have a chance to see him before surgery, so all kinds of thoughts were going through my head - I didn't know if I would ever see him again.
Well he made it through, and they did a biopsy and they gave him a stoma (so he had an ileostomy). This was difficult to deal with at first but we got the hang of it eventually - we had to as he had it for 5 months! But my husband was great with it - fortunately for me, so I rarely had to do it by myself. We usually changed it as a team, and we had to frequently as most bags wouldn't stick to him and used to explode everywhere. I am so glad he now poohs into nappies! Nappy changing is a breeze!
The biopsy showed that he had short segment Hirschsprungs, which to us was best case scenario after all the different things they were guessing it may have been and it was better than long segment. He came home for the first time after 10 days (his weight had to increase a bit before he was discharged). He weighed 2.6kgs at birth (yes, he was tiny!) and 2.8kgs when he came home for the first time. Then less than 2 weeks later, I noticed that whenever I would feed him, it was coming straight out through the stoma and he was never full, so we took him back to hospital and they think that was his first bout of Hirschsprungs Enterocolitis. He got very dehydrated and lost a bit of weight, so stayed in hospital for 5 days.
Then a similar thing happened another fortnight later, so we took him to our closest hospital (where he was born) as we figured they'd just put him on a drip and antibiotics again. Turns out though that they refused to handle a baby with an ileostomy, so they transferred him to Monash again (yes, another ambulance trip). This time, even though I kept telling them it was the same thing as last time, they tested for everything else but that! They tried to do a lumbar puncture, to test for meningitis, and I just about hit the roof as I didn't want him to go through that and I was fairly sure he didn't have it. Turns out the test didn't work and when they went to try again I refused permission. When they finally found out that he had the bowel infection again (I couldn't resist saying I told them so) they started treating him straight away, but by then he had lost so much weight that they weren't sure he'd survive. We ended up giving permission for them to put in a central line for him to get fed into his heart and through his veins (something I suggested a week earlier). He also got various infections whilst in hospital which were set backs, so his stay this time was 7 weeks and included his first christmas.
Also, the patholgy from his biopsy was now unclear (for some odd reason) and they now didn't know the level. At one stage they thought the Hirschsprungs was throughout his small bowel as well, but fortunately that was ruled out by a contrast test, then they thought it was right through his large bowel, but that was ruled out in his second biopsy in January, when it was found to be longer than short segment but not too bad. It affected the whole left side (end) of his bowel up to the transverse colon (I think!).
They also tested him 3 times for Cystic Fibrosis - which was very worrying. All three tests came back negative.
[Edited on 20/04/2008]
[Edited on 20/04/2008]
It was all so distressing - of course you have pregnancy hormones going berserk and nothing is going as planned. I had never been to hospital before and had been looking forward to the whole experience, and I had certainly never been in an ambulance. So the first time was when Ryley was transferred to Monash. They didn't have a bed for me there though so I still had to go back to The Angliss at night - that lasted one night then I checked myself out. I couldn't stand being in a ward where there were 3 other new mums enjoying their babies - I spent the whole night crying.
Anyway, at Monash, they continued to run tests and tried to relieve the blockage, but nothing much was happening. Finally 3 days after birth his tummy blew up and they took him for another Xray which showed that his large bowel had ruptured. So they rushed him into surgery (they couldn't even wait for us to get there). They also said if he was at the original hospital or at home with us, he would've died. Very confronting to hear! It was a horrible experience, as we didn't know whether he'd pull through the op. I kept trying to imagine my little baby in a very serious operation - how did he know that life was worth living? And we didn't have a chance to see him before surgery, so all kinds of thoughts were going through my head - I didn't know if I would ever see him again.
Well he made it through, and they did a biopsy and they gave him a stoma (so he had an ileostomy). This was difficult to deal with at first but we got the hang of it eventually - we had to as he had it for 5 months! But my husband was great with it - fortunately for me, so I rarely had to do it by myself. We usually changed it as a team, and we had to frequently as most bags wouldn't stick to him and used to explode everywhere. I am so glad he now poohs into nappies! Nappy changing is a breeze!
The biopsy showed that he had short segment Hirschsprungs, which to us was best case scenario after all the different things they were guessing it may have been and it was better than long segment. He came home for the first time after 10 days (his weight had to increase a bit before he was discharged). He weighed 2.6kgs at birth (yes, he was tiny!) and 2.8kgs when he came home for the first time. Then less than 2 weeks later, I noticed that whenever I would feed him, it was coming straight out through the stoma and he was never full, so we took him back to hospital and they think that was his first bout of Hirschsprungs Enterocolitis. He got very dehydrated and lost a bit of weight, so stayed in hospital for 5 days.
Then a similar thing happened another fortnight later, so we took him to our closest hospital (where he was born) as we figured they'd just put him on a drip and antibiotics again. Turns out though that they refused to handle a baby with an ileostomy, so they transferred him to Monash again (yes, another ambulance trip). This time, even though I kept telling them it was the same thing as last time, they tested for everything else but that! They tried to do a lumbar puncture, to test for meningitis, and I just about hit the roof as I didn't want him to go through that and I was fairly sure he didn't have it. Turns out the test didn't work and when they went to try again I refused permission. When they finally found out that he had the bowel infection again (I couldn't resist saying I told them so) they started treating him straight away, but by then he had lost so much weight that they weren't sure he'd survive. We ended up giving permission for them to put in a central line for him to get fed into his heart and through his veins (something I suggested a week earlier). He also got various infections whilst in hospital which were set backs, so his stay this time was 7 weeks and included his first christmas.
Also, the patholgy from his biopsy was now unclear (for some odd reason) and they now didn't know the level. At one stage they thought the Hirschsprungs was throughout his small bowel as well, but fortunately that was ruled out by a contrast test, then they thought it was right through his large bowel, but that was ruled out in his second biopsy in January, when it was found to be longer than short segment but not too bad. It affected the whole left side (end) of his bowel up to the transverse colon (I think!).
They also tested him 3 times for Cystic Fibrosis - which was very worrying. All three tests came back negative.
[Edited on 20/04/2008]
[Edited on 20/04/2008]