All had been going great with my fourth pregnancy, until the 19 week ultrasound. It showed that I’d had a bleed into the sac, but they really werent concerned, I’d had a brief sharp pain low on the side of my belly around a week prior which actually stopped me in my tracks and doubled me over, but the midwives told me it was just round ligament pain, still, an appointment was made for me to go to fetal diagnostics at 23 weeks. A few days later I had a small dark discharge, I was examined at hospital and after MANY hours I was given the ok and sent home. The following morning I woke up bleeding, it wasn’t a huge amount, but it was bright and continuous. Off to hospital again. I sat in a room all day, still bleeding, by late afternoon the midwife decided to do an amnisure, it was positive for a leak. She said my membranes were leaking and it was just a matter of time before id go into labour. I was sent home to wait. Within 45 minutes to an hour of being home, I felt a massive gush and bolted to the toilet, I was hemmoraging. Whilst I waited for mum to get her stuff together to take me back to hospital I had another massive gush of blood.
When we arrived back at the hospital I was taken straight to delivery. There the horror stories began. I was told my baby was going to be born within hours and that she was going to die. The midwife told me she’d be see through and covered in bruises, if she came out intact at all!! I was horrified, devastated, traumatised. We waited for ages, the midwives giving me no hope at all and telling me to make my peace and say good bye to my baby, they told me I had to give up and let her go. I just couldn’t understand what was going on. The baby was so incredibly active inside me (as usual) I know that when something is wrong they conserve their energy, but this baby had no idea anything was amiss!!!
After hours of waiting I Had to get out of that room and had mum wheel me downstairs, I just couldn’t sit there listening to other women birth healthy full termers around me while mine was supposedly dying. After a short while downstairs we went back up where I was put into a small delivery room down the back of maternity to await the inevitable. I was almost 20 weeks gestation. The midwives popped in from time to time, I continued to bleed, but the massive bleeds had stopped. It was a friday night and I couldn’t get an ultrasound until the monday, so we waited with baited breath to see what was going to happen.
On the Monday I hit 20 weeks, and it was my 38th birthday. The ultrasound showed an extremely active, healthy baby and whilst the fluid levels were low, they were within normal range, we thought we’d get good news. Later that afternoon the obstetrician came up and recommended I be induced. He said it was obvious that she must have some sort of chromosomal abnormality like downs syndrome, despite my maternal serum screen and every other test coming back perfect. I said I didn’t care if she had downs, he told me it was inevitable that I’d miscarry so we might as well do it now, but I was adamant that if that was the case it could happen naturally, I was not about to abort my baby girl. He said I could go home and wait, or stay in hospital. Visions of what those midwives told me filled me with horror, there was no way I was going to risk my other kids seeing that so I stayed in hospital.
I continued to bleed but the leaking seemed to have stopped or slowed, I was poked and prodded and every week they did a speculum, each time they did that id have another hemorrage but it didn’t stop them. I was told repeatedly that my baby, who we’d named Jasmine, was still going to die and there was no hope at all for her. I researched prems and found they had some chance from 24 weeks so that was my first goal, reach 24 weeks and get to Monash! When I mentioned this to doctors and midwives, again I was told there was no hope, one midwife told me I was cruel for wanting to put Jazz through NICU, she also told me that if by some miracle she lived she would be severley disabled and unable to have any sort of life.
At 23 weeks we saw fetal diagnostics who said all was well, when I got back to Casey hospital they had steroids for me and I knew Jazz would be ok. At 23 +5 I finally got to Monash and at 24 + 2 Jazz made her very scarey entrance!!! She was 526g, 28 cm long, 20cm head circumference.
She had a rough ride, her isolette broke down on her the second day and after a couple of weeks her ventilator broke and she needed cpr. She had all the many infections including meningitis at 26 weeks. She had a large PDA, but 2 courses of indomethicin closed it. Not long after getting meningitis her o2 got worse ( as if that were possible) and she needed the high frequency ocillator, I had seen 2 other 24 weekers put onto that machine and both passed so I just broke down, I thought she was going to die. Oxygen requirement kept going up and she was in 100% and still frequently desatting. They gave her a course of steroids and within a week she was extubated!!!! It was like a miracle drug! But a few days after the course stopped she rebounded, it was either more steroids or reintubation. She had a second course of steroids and never looked back! We had quite a few ups and downs and many times we werent sure shed make it, but she came home after only 5 months, and was featured in the herald sun!
Last year was her first full year out of hospital and it was a shocker! She had come off day time o2 in December 2009 and on 15th march 2010 got the ok to come off completely! It was her birthday the next day and this was the best present ever, but the next morning her breathing was not good, she opened some pressies with the kids and then we went to Monash, she was admitted with bronchiolitis and back on o2, while she was in there she picked up whooping cough, after 3 weeks she came home on good friday. A week later she was back again with a whooping cough flare up, home after a week, and stayed out for a month then back in this time with RSV. That was worse than the whooping cough, she ended up in ICU on 18lt o2 and I was having some very scarey NICU flashbacks! and this was our pattern for last year, home for a few weeks or a month and back in for 1-2 weeks, We probably had a good 4-5 months out of last year in hospital admissions and my other kids really struggled to cope. Her feeding got worse and worse over time, weight gain was always a massive issue so in November 2010,after a month of admissions with respiratory viruses and rotavirus and a weight loss of around 1kg she had an ng tube inserted, and we havent looked back ( I really don’t know why they didn’t do it sooner).
Its not ideal, but at least shes getting the nutrition she needs and so far has been able to fight off the couple of bugs shes had already this year, hopefully we can try to wean her after winter. In between all of this she was also diagnosed with mild CP ( apart from her feet turning in 90 degrees you wouldn’t know!!! she just doesn’t ever STOP!! she runs, climbs and jumps) and a sensory processing disorder, but is so switched on its just not funny! She supposedly has a language delay, but she does say some words and best of all shes FINALLY off o2 again!!. As of 28th February 2011, and hopefully she wont need it ever again!
Vicky, mum to Jasmine