On the morning of 8th march, at term plus 5, I went to my regular antenatal appointment, hoping I would have perhaps a sweep and be sent home to see if things would progress naturally. No such luck! Again babies heartbeat was irregular but also decelerating, and I was also showing signs of pre-eclampsia so was sent straight to Shrewsbury hospital to be monitored and for a decision to be made, whether to induce me or leave me labour naturally. Every time I had been sent to hospital for monitoring, the ECG/monitors could never accurately pick up babies heart beat due to it being so irregular, the machines just went crazy and set off alarms, which was nothing new to me as it had been found at 36 weeks and i was told was normal, however they were concerned so at this point I was given some options. Go home to labour naturally, get induced and sent home, or get induced and stay in. I chose to be induced, which they said would be best, as baby could be kept an eye on. In the mean time my consultant or midwife must have spoken to a cardiologist, who came to have a listen and also to scan babies heart. I was used to this so didn't think anything of it. They really struggled to scan her heart so I was sent down for a more detailed scan and at this point the cardiologist said it would be best for the baby to come sooner than later. They didn't want me to labour naturally as the babies heart wouldnt be able to be monitored properly and if she was distressed there would be no way of knowing. At this point I was so excited, we were going to meet our baby very very soon! After it was decided that a c- section would be best they explained that the baby had what they suspected was heart block. I was way too excited about meeting my baby, and nervous about the c-section and really didn't take in what they were saying, which I should have, but in hind sight perhaps it was best I didn't, I would have just worried more.
So my section was booked for 9 that night as I'd eaten at about 3 and they have to wait 6 hours after eating! Cue lots of waiting around..Because I'd been induced I started to get contractions, but didn't really realise, I just thought it was baby moving around, haha. When I mentioned it to my midwife I was hooked up immediately and it turned out I was having contractions every 3 minutes! They then rushed me in for a emergency section. Again I didn't really realise why. Too excited.
So I was in theatre, which was great actually, the radio was on, everyone was chatting and friendly. Very relaxed! They were even singing a long to the radio! I was given my epidural, and will never forget the song playing as I went numb, ed sheeran - Lego house. Before I knew it I was being cut open. I can't remember the song playing whilst Rosie was born, I was proper daft, I went from deliriously happy and daft to feeling incredibly sick. Then the most pivotal amazing moment in my life. My beautiful baby girl was born. I'm welling up just writing this. She was a very healthy 8lb 6oz. They whipped her away, cleaned her and then brought her over to meet me. Amazing. I cried, and kept repeating to Dave, our beautiful baby girl, look our baby girl. Then they took her away to the neo-natal unit
they had explained she would go there just to be checked because of her irregular heartbeat, and that it was routine, and not to worry. Yeah right. I wish that were true.
I was stitched up. Very odd feeling, like some one is washing up in your tummy, then I was taken to recovery, at this point I was ecstatically happy as I had a beautiful baby daughter, and I was also high as a kite from the epidural, I was singing and humming and chatting away, rang my mum etc. Very vague recollections. Next thing I remember I was in a room on the ward, Dave had been to see Rosie in neo natal, he'd rushed back to say they were bringing Rosie in to meet me! I cried, I was just so happy and overwhelmed. She was all wired up to machines they had to wheel along with her incubator. They popped her on my chest and suggested I tried to feed her, I didn't need to try, she snuggled down to my breast naturally, it was amazing! She came in a few hours later again for a feed, just incredible, then I rested, ready for the next morning, and meeting my beautiful girl properly!!
If I'm honest this is hard to write as I'm trying to block out some of the bad things as I get too upset. Basically Rosie was wired up to various machines to monitor her heart. When she was born her heart rate was 50 bpm, when a newborn should be 140+ bpm. They were in talks with Birmingham children's hospital immediately, discussing what medical intervention they should do to help speed up her heart, but by the time they had discussed it her heart rate was improving. Everyday it improved by about 10bpm, until she was steady by about 3 days old at 100 bpm ish. I was back and forth feeding and staying with Rosie except when I had to eat/have Meds/get obs/sleep, and the machines surrounding Rosie made me hugely paranoid, because her heartbeat was still very irregular they kept setting off alarms, and if her heart rate dipped it set them off. I had baby blues pretty bad, spent a lot of time crying, especially when I wasn't with her. It was so hard being separated, I cried when I wasn't with her, when I knew I was going to see her, when I was with her, when I had to leave her! I was. A barrel of emotions. My OH Dave was my rock, and we had a constant stream of family and friends everyday, which helped enormously. I got in a right state one night and was asked if I would like Dave to stay, so he had a camp bed by my side. I couldn't have done it without him! we enjoyed the time together and with our gorgeous girl and couldn't wait to take her home!
On monday afternoon, Rosie is 4 days old at this point, we were seen by the drs and told they were going to scan Rosie's heart. So a chap turns up, spends about 30 mins scanning a very upset Rosie, broke my heart, I wanted to kick him. Just as he was finishing Dave pops out to the loo, and I make the stupid mistake of asking if everything is ok. He says actually no, but I will come back in a bit to talk it through with you. I sobbed. So he comes back and explains that Rosie's heart chambers are twisted, there is a few other things he is concerned with too. At this point he tells us he is not a trained cardiologist he just takes an interest in it, but what he does say is that he hasnt known anyone survive long with this problem. I can't explain the complete and utter despair I felt. My world was crumbling and my heart was breaking for my perfect girl. I went into shock. It was the worst time of my life. I honestly can't put into words how horrific it was. I didn't sleep that night, I spent most of the time in with Rosie just holding her between feeds and crying.
Tuesday morning we were seen by another doctor who had reviewed the findings of the scan. He was a cardiologist, but still told us the wrong diagnosis. Although it was better than the last one, it was still pretty severe and Rosie's life expectancy was uncertain. We were told she had a double switch. Heart-switch is where your arteries are switched and pumping blood incorrectly, I.e, the clean blood goes into your lungs and the dirty blood into your system, double switch is very rare apparently and is where your heart switches and repairs itself but the arteries are twisted and so are the chambers or something like that. My brain was pretty mashed at this point. I was pleased it wasn't as bad as they thought the day before but still scared and felt so lost.
The hospital had been in talks with Birmingham childrens hospital and they decided she should be taken there straight away. I really wish she had gone there in the first couple of days to save all the heartache. A ambulance was set up immediately and she was taken in a incubator with two lovely nurses at around midday, I couldn't go with her, nor Dave and that broke our hearts too. Our poor baby. I was then discharged. Nearly five hours later. Not impressed at all. All I wanted was to be with my baby girl. Dave drove us to brum and we got there by around six, as we had to stop and get a car seat on the way as ours was at home!
We were taken to the ward and got to see our beautiful girl finally, and we met the nurse looking after her. We started chatting and told her what they had told us in Shrewsbury was wrong with her. She smiled all the way through, and I thought either she is sick in the head or knows something we don't. She kept saying, I think you should just wait and see the doctor. So about 15 minutes later the doctor came in, we explained again and he said, wow, wait. Forget everything shrewsbury told you, they are completely wrong. He pointed at Dave and said, I don't know what your heart looks like, and pointed at me and said the same, then he pointed at himself and said, but I know what my heart looks like and Rosie's is exactly the same as mine. He said her heart is formed perfectly normally and is functioning the way it should, it's just got a extra artery formed, called a coronary artery fistula. Basically a extra artery going from her main artery and into one chamber, which is just pumping blood continually around. Basically it's causing no problems at the moment but could possibly in the future, it could cause tissue/muscle to die where its taking the blood from, or cause the chamber where it is pumping blood to, to stretch, this will have to be corrected with keyhole surgery in the future. He explained she also still had heart block too, which would need to be monitored and possibly corrected with a pacemaker in the future. Cue more crying from me, tears of pure relief and happiness too that it wasn't so bad after all. I could have kissed this guy. I told him that too and he laughed. He said he would come and see us in the morning and we would chat some more then. It was late now, and we needed to find accommodation. Not to go into detail but we stayed in the Ronald McDonald house, incredible charitable organisation. Amazing place.
To summarise Rosie stayed in Birmingham for two days, they were so pleased with her progress we were allowed to take her home. The moment I was told that, I was so happy I cried. We have since been back four times for check ups. I can't explain how grateful I am to the drs and nurses in Birmingham, they were and still are incredible. They could answer any question you asked clearly and were very reassuring. We have signs to look out for, and if we are concerned in the slightest we have to go straight to a&e.
Rosie is as I post/wrote this 13weeks and 5 days old, they are so pleased with her progress that they are putting off her surgery until she is around 6 months old! She will definitely need it before she starts to crawl properly or start walking due to the pressure on her heart. Also her heart block is improving on it's own. She now spends more time in a regular rhythm than in heart block, which is incredible news
I'm sorry this is such an essay, in a way it's been really cathartic for me to write this down. This is really a brief a lot more happened but it was hard writing this all. It was a really hard few weeks in the beginning.
I love my baby girl so much, she is the light of my life, my pride and joy, I just can't explain how much I love her. She's incredible!!!!