Mireya means 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...

Today 23/4/18 we had a meeting with the liver consultant Mireya is under. There wasn’t much change with what we already knew we know it’s a large cyst and suggested that it’s connected to the liver. When Mireya was born the cyst tripled in size but since a scan in January it hasn’t grown it has stayed the same. All that’s changed since we found out about the cyst at my 20 week scan is it’s not a ovarian cyst as thought. The consultation was just to make sure Mireya hadn’t had any symptoms that suggest the liver not working properly  which she hasn’t had. After seeing the DR she then had a ultrasound scan which the DR is going to review the images and discuss Mireya in the meeting on Monday on what to do with regards removing the cyst he is also going to be in contact with the cardio consultant but the cyst removal 100% won’t be till Mireya is recovered and discharged from care after her heart surgery. Last week was the first weight loss Mireya has had since she was born which wor...

Mireya had another blood test before the meeting to make sure she hasn’t got any infection as this can put surgery back by 4 weeks She has this done every other week. She also had her weight done and she is 3.390kg (7lb 8oz) this isn’t a good weight gain this week for Mireya. Then the MEETING we was so nervous waiting to go in and speak to the consultant then we got called in there was Mrs Barwick (Leeds consultant) and Mr Hayes (Doncaster Consultant) one of the consultants who Mireya has been under since she was moved to Doncaster neonatal unit.  They both reviewed all Mireya’s medication and decided to up the diuretic medication from 0.3ml to 0.5ml this medication helps keep fluid drained from around her heart and lungs. Then a quick echo scan for Mrs Barwick to take images and seen the holes and everything she needed. Mireya is booked in for a detailed echo scan at Leeds on the 19th April which the surgeons need before surgery to plan how surgery will be done. Then on Tuesday...

I have decided to write this To keep all our friends and family updated on her progress throughout her heart surgery. I wish I had started this when she was born on 7/11/17 @ 1:12am at 30 + 4 weeks 10 weeks early weighing a teeny tiny 938g (2lb). She was perfect our beautiful daughter was here. She was born in Jessops hospital at Sheffield When she was born she was took straight to another room where they was doctors & nurses all there to do what they needed to but after 5 minutes they come for Braiden to go and meet his daughter and when he come back I couldn’t believe it she was breathing on her own he took a photo and that’s all I seen for 8hours until I was well enough to be took down to the unit were she was with wires all over, machines beeping but in her incubator there was our girl so small so perfect. The love I felt was unbelievable. She was been fed 0.1ml of milk every two hours. We was only able to touch her through tiny holes on the incubator until 2 days after she wa...