Mireya means Miracle

I haven’t updated since last week cause it’s been one big emotional rollercoaster for us.  Last Tuesday (22/5/18) we took Mireya in to LGI for her operation to be done on Wednesday (23/5/18). All was good Wednesday morning there was a bed in the intensive care unit and she was 2nd case to go to theatre. The surgeon and the anaesthetist had been and spoken to us all consent forms was signed and we was just waiting for them to call for her. 20minutes before surgery unfortunately a poorly baby had been fetched in and took the last intensive care bed that was empty for Mireya so the operation got cancelled. We was absolutely gutted emotions was running high but that poorly baby needed it and we got told we could bring Mireya home and wait for another date. we packed our things and come home awaiting a phone call. We have now been given Wednesday 30th May for Mireya to have the operation and she is 1st case so this means the operation is in the morning. So if there is a bed Wednesday...

Mireya’s operation got moved again from Tuesday 22nd  to Wednesday 23rd May. Yesterday (21/5/18) We was on nerve ends waiting for another phone call to cancel the operation again every time the phone rang we just was so nervous cause we didn’t want it to be the hospital. But the call didn’t come. Then reality really kicked in 😬 we are going in hospital and our baby girl is having the surgery. So this morning (22/5/18) I woke up at 5:30 and that was me up waiting for 8:30am to ring the ward to see what time they wanted Mireya in. Time was going so slow but eventually we got to 8:30 and rang the ward and they was a bed available and we had to be at the hospital for 2pm. When we got here Mireya had observations done and then we met the surgeon. Mireya’s operation is gonna be tomorrow afternoon and will be 6 hours long and then we are unable to see her for 2hours after while they sort her out and get her comfortable in intensive care unit. But the surgeon will ring us as soon as su...

today 15/5/18 Mireya had her pre op assessment at Leeds General. We first met with a nurse who went through a load of paperwork and told us a little what to expect once she comes out of surgery. Then Mireya had a ECG, length & weight, bloods and then to finish off a chest X-Ray The bloods is by far the worst part cause she is small it’s hard for them to get a good vein so after two nurses tried twice we ended up on the ward where the doctor managed to get the samples he needed to have her blood tests done and have the right blood ready for the operation. We have also been given some special body wash and A nasal spray which we have to use 5 days before surgery this will help her skin be sterile and help the skin heal after surgery. So once again we are set for going on Monday 21st for the operation on Tuesday 22nd. Fingers crossed it doesn’t get cancelled again. ECG Getting ready for Chest X-Ray Chest x Ray Bloods 🙈

This morning we got a phone call from the hospital I thought it was to tell us times and everything for when we go tomorrow but nope unfortunately they have cancelled Mireya’s operation and moved it to the 22nd May. Upset feeling as we both got our head round it all happening and now we got another 13 days to wait.

Finally a date has been set for Mireya to have open heart surgery. She will be going into Leeds hospital on Thursday 10th May and have the operation on Friday 11th May. We have been told to still be on stand by as if there is a cancellation we could be called in sooner. Reality hit after the call our beautiful baby girl is having a major operation on her tiny little heart. We know it’s been coming and it’s what she needs but as for any parent having there child go for a operation it is just so nerve racking. So our bags are packed and we are ready for next Thursday maybe before. Our Little Miracle 

Today (30/4/18) we are very proud of Mireya she has had her first full bottle in 4 months. You may think this is a silly thing to be proud of but bottle feeding is one of the most challenging parts for Mireya  and people don’t realise how hard it is to get them to suck, swallow and breath all at the same time for a term baby it just comes naturally but the upset and struggle we have had is upsetting to watch your baby not been able to  coordinate properly.  To leave the neonatal unit in January Mireya had to be full bottle fed she struggled with this a lot and was taking 20-30ml max and this was taking over a hour to fed her. The nurses suggested to have speech and language therapist come to see her to try get her to take more. They observed her for over a hour feed and suggested she needed part bottle, part tube feed but at the time Doncaster hospital wouldn’t allow babies to go home tube fed. So we come home with the struggle of 30ml every hour n half.  20 days a...

Yesterday 24/4/18 I woke up at 5am I could not sleep thinking about and hoping we get the phone call. We know what’s coming we just want to know WHEN! So by 9am all the washing and ironing had been done, Mireya’s bottles and syringes cleaned. And then I sat with our beautiful little girl. I was just staring at the phone just waiting the phone did not ring. Today 25/4/18 I rang Dr Barwick (cardiologist) secretary to find out what was happening she told me that Mireya had been discussed at the meeting and I needed to speak to a cardio nurse specialist she put me through to the nurse and she explained that the surgeons have agreed with the consultant that the 4 holes (2VSD’s, 1PDA & 1PFO) need closing as soon as possible. She then went on to explain Mireya had been put on the acute board which means priority and can be done in as little as 2-4 weeks. They didn’t schedule a date as yet for Mireya’s surgery as they are waiting for the Liver team to meet on Monday in case it could cause...