Apologies in advance for the long post but I wanted to tell you all my birth story and the story of my little Fighter.

On the 29th of May at 39weeks my midwife agreed to give me a sweep. I suffered with pretty bad SPD and swelling during pregnancy and the bigger I got the less I could move. I was about 1.5cm dilated & she told me that I shouldn't expect much but could go back in a couple of days for a second sweep. I went home, bounced on my ball and had a nice nap. I went to bed that night fairly disappointed that nothing had happened.

At around 1.30am I woke with stomach pains. I tried to get some more sleep but eventually gave up & went to the sofa to watch greys anatomy! At around 3am my husband woke up & joined me on the sofa. He was pretty pissed I hadn't already woken him but my contractions were still about 8mins apart so I thought we had plenty time. 2 hours later I was in the hospital with my legs in stirrups pushing away!

Whilst I was pushing the midwife was struggling to keep track of babies heartbeat. A Doctor joined us in the room and found that my babies heartbeat was only 58bpm and despite the fact I had been pushing I was actually only 8cm dilated. I was rushed for an emergency c-section and my poor Hubby was left behind in shock.

At 06.05am on 30th May our beautiful Daughter, Connie, was born kicking and screaming (so I'm told). I had to have a general anaesthetic so my husband couldn't be in the room. I hate that neither of us got to see her come into this world and more so I didn't even know she was a girl till hours later! Bless my husband though, he had to keep telling both our families white lies as he didn't want to tell them she had been born until I was with it enough to know she had been born. Here's my baby :

At around midday whilst attempting our 1st breast feed the midwife noticed that she was breathing very quickly. She was taken to the neonatal unit and after an xray we were told she had some liquid in her lungs, probably because of the speed of the emergency section. Unfortunately things went downhill from there.

I was awoken by a Doctor at around 3am the next morning who told me that Connie's blood infection marker had shown that she was in fact suffering from Strep B Septicaemia and they had to do a lumbar puncture to test for meningitis. She was placed on an intensive 10 day course of antibiotics to treat the infection and moved to intensive care.

After 2 days in ICU she started showing more problems. Her heart rate was very erratic, going from a normal level of between 120 - 150 bpm and dropping to 50 - 60 bpm. After an Echo and Ecg she was diagnosed with a 2:1 Atrioventricular block and they found 2 holes in her heart. We were told she didn't require any treatment for it and would be perfectly healthy. We were also given the good news that the Septicaemia hadn't developed into Meningitis.

She had a hard slog getting the antibiotics. Apparently she's pretty tough to put an IV in so after having IVs in both feet and both hands that were pulled out, got blocked or tissues she had to have her head shaved and a central line put into her head!

After the antibiotics were finished we were all set to go home, we just had 1 task left, get her to feed! She had thus far only been fed by IV fluids and a tube in her mouth and/or nose as the Dr's didn't want to stress her. Things still didn't go to plan. She would take maybe 5 - 10ml and then fall asleep. She didn't ever wake up hungry, in fact, she barely woke up at all. She didn't cry. She just slept, and slept, and slept. We were lucky if she was awake for 15mins a day. Her breathing remained the same aswell. It was very fast and very laboured. At one point she was taking 88 breaths per minute. Chest xray showed her lungs were clear and bloods showed her infection was fully gone. Her weight was yo-yoing as well. For the next 2 weeks we spent our days seeing feeding therapist, developmental therapist, dieticians, neurologists and respiratory consultants. She had bloods, xrays, ecgs, 24 hour ecgs, developmental tests, diet alterations and feeding assessments. We were told she might have brain damage, she might have another infection, her lungs might be too small, she might still be recovering from the infection. Everything came back fine. But I knew it wasn't that, mother's instinct told me the issue was her heart.

We live in the North of Scotland and although our NHS is amazing, specialist areas of medicine tend to be centralised to either Glasgow or Edinburgh, around 3 hours drive away. Once a month a paediatric Cardiologist comes up North. We were told he would assess our daughter and hopefully then we would get some answers. We were so glad as scarily her heart rate had started to drop further. She no longer went up above 77bpm and had even dropped as low as 35bpm!

He was the rudest man I've ever met. He came in, done an Echo and told us there was nothing else wrong with her. Her block was not causing her to be breathless or tired or stopping her feeding. When I pointed out that the British heart foundation website listed all of those symptoms under a heart block he stated I was wanting him to say my baby was sicker than she was! I explained that we had been told to wait on him and he would hopefully have some answers and we were frustrated because by now she was 3 weeks old and we didn't know what was wrong. He told me he had been saying for weeks that there was nothing wrong with her and she should be sent home or they should start from the beginning and do all the tests again. I left the meeting in tears.

Another week passed with no real change. She had a brain ultrasound, more xrays, more bloods and a 24 hour saturation test. Again, all were clear.

On the morning she turned 4 weeks old we were told she was finally being transferred to a hospital in Glasgow. The Dr's had noticed that her liver had started to swell up and Glasgow had, reluctantly, agreed to look at her. The next day we made the trip down.

Within 48hours we were given a diagnosis. She was suffering from congenital long QT syndrome with a 2:1 block. She also has multiple holes in her heart that they describe as Swiss cheese ventricular septal defect and there was a duct between her heart and pulmonary artery that hadn't closed after birth like it should have. The combination meant her heart was beating too slow and when it was beating unoxygenated blood was being pushed back into her lungs and around the body. Her liver was swelling because her heart was starting to swell. She needed surgery urgently. It was the weekend so as long as she remained stable the surgery would be a couple of days off.

On July 3rd at 4 weeks and 6days old she had heart surgery. They fitted a pacemaker, put a pulmonary band in to restrict the blood flow to her lungs and sealed off the open duct. It was the longest 7 hours of my life. When we finally got to see her in ICU it was heartbreaking. She just looked so small and fragile:

She spent 3 days in the ICU before being transferred back to the ward. She was super grumpy for a couple more days and clearly found her voice but she came on tremendously. She was awake more, she even took some full bottles! Her wounds looked fab too:

We finally got home when she was 6 weeks old. Unfortunately, although her feeding initially improved after the surgery, she dwindled off again and she came home with a feeding tube.

We were only home for 6 days though before she was readmitted to the hospital because of vomiting. She could not keep a feed down and was throwing up after very small amounts. They wouldn't normally be concerned but she hadn't put on weight in 10 days and because of her cardiac issues she needs all the calories she can get.

Another 10 day stint in hospital has now meant she has been placed on continuous pump feeding through her NG tube. We're also trying a new dairy and soya free diet to see if it's intolerance. We are going back in again on the 12th for a couple of days to attempt going back to 3 hourly feeds and hopefully that will tell us whether it is intolerance or whether there is an issue with her stomach.

She's not quite there yet but she's the happiest little girl and utterly adores her big sister. We know she'll need lots more surgeries to maintain her pacemaker and she's on meds for life but she's been such a little Fighter already. I'm so grateful that the neonatal unit here kept pushing for her to be properly looked at or she might not be with us. Below is a picture of her with her beads of courage, each 1 representing a night stay or procedure she has had so far (minus the latest 10 nights as haven't received those yet):

Thanks to those who have stuck it out to this point.

Hug your babies close, they really are miracles!