Posted: June 29, 2018

Rhiannon-Ray’s Story

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At 6 weeks pregnant we discovered I had a biconuate Uterus aswell as suffered from Antiphosphilipid Syndrome (blood clotting disorder) which put our pregnancy at high risk. Pregnancy was never straight forward, but we didn’t expect what was to come.

At 17 weeks I experienced some leaking, after ringing PAU I was told it’s more than likely bladder weakness (common in pregnancy apparently) so I didn’t worry too much in all honestly I thought nothing could go wrong after 12 weeks. Everyone reminded us how that was the safety point in pregnancy.

The leaking was small amounts but continued daily.

Our 20 week scan came and of course we were all excited, the midwife doing our scan didn’t speak at all we thought maybe because he was a student from university he worked better in silence. Until I looked at the screen and it was really hard to make our little girl out I never had a 20 week scan before so to me that could have been normal. I asked why it was we could hardly see her and that’s when our day was about to get turned upside down. He replied “there’s no amniotic fluid, I need you to take a seat in the waiting room so I can speak to a doctor” this didn’t seem normal.

Waiting and waiting for what seemed like a life time we were called into a private room by a doctor she explained I now suffered from Oligohydramnios (no amniotic fluid) she said it was more than likely what I experienced at 17 weeks were my waters breaking. She sent us home with an appointment for fetal medicine at RVI.

The appointment at Fetal Medicine came around, we had no information and didn’t realise how serious this was for our daughter. After another scan we were sat down with the consultant who explain why amniotic fluid was important and that it was very dangerous to suffer PPROM (Preterm Premature Rupture of Membranes) this early in pregnancy. He explained this gave our baby a small chance of 20% survival rate. If we was to make it past viability (24 weeks) he then asked us if we would consider a termination. We refused and agreed I would go on bed rest.

We attend appointments at QE to undergo PPROM Protocol to make sure both baby and I didn’t catch an infection and were ok. We had regular scans at Fetal Medicine to ensure our baby was growing as she should be and she was coping without any fluid.

At my 28 week scan our little girls lungs had grew not by much but enough to make the consultant smile it was a shock to us all and still until this day we don’t know how, it was a miracle and good news. We talked birthing plans we were to be started off at 36 weeks she was doing amazing staying in this long.

At 30 weeks gestation I went into spontaneous labour I was giving steroid injection for her lungs and gave birth to our Rhiannon-Ray at 12:07pm on 25th January 2016 she came into the world breathing on her own and she gave us a weak cry before she was taking away to be giving help. She weighed 1580g (3lbs 8oz) so tiny.

We knew the next 48 hours were critical it was now time to pray and hope for good news.

Her oxygen levels were 100% on the ventilator which meant she needed extra help from Nitric Oxide to stable her.

48 hours into special care she came off Nitric Oxide completely and to our amazement she coped very well. Her brain scan showed a small bleed on her brain we wouldn’t know how this would effect her.

Day 4 – she came off the ventilator and onto C/Pap Breathing Support, we were told she would have to go on coffee shots to remind her to keep breathing on her own. we were finally allowed to hold our precious little girl. She started feed’s which would start and stop for the first week until her stomach adjusted to the milk.

Day 8 – she came off C/Pap Breathing Support onto High flow (humidified oxygen) she was sitting at flow 6 and we were told her weaning programme would start the following week depending how she coped.

Each day she was showing amazing strength she was gaining weight amazingly, she was getting stronger and proving she was a fighter.

Day 25 – she was coping on High Flow, our little fighter. She was sitting in flow 4 and keeping her body temperature and got demoted out her incubator into a baby therm finally allowed to wear clothes now they were tiny. We also got promoted to Blue Area so much in one day but that didn’t stop our girl.

Blue area meant time for growing and getting healthy to come home first time we heard home and baby in one sentence.

Day 28 – she was switched down to flow 3 we couldn’t believe she had sailed through these four weeks just going from one strength to another. But as her flow went down her oxygen went up. Every few minutes it was needing turned up and up until she require 50-60% of oxygen. She stabled for a few hours and her requirement started spiking again. Doctors came and advise they upped her flow until she was stable.

Day 29 – we came in to find her in flow 7 with her oxygen requirement still high 60’s. We were sat down to discuss what options there was from here, she could end up back on C/Pap or need steroids and other help for her lungs. She needed to gain more weight for her lungs to grow healthier. She was booked in for an x-ray which showed she had shadows on her lungs possibly fluid. She started working hard on her breathing the doctor came and listened to her chest he then heard what he though was a PDA (heart murmur) he booked in a heart scan which proved she did have a moderately open PDA because of how she was already requiring large amount of oxygen they didn’t want to risk her not coming off the ventilator if she was to have the operation to close it and because it was only moderately open we had hope it would close alone. It explained the shadows on her lungs and she was giving a double dosage of diuretics daily to help flush out her lungs. Her gas had also came back that she was anaemic and needed a blood transfusion.

Day 30 – she receive her blood transfusion and the diuretics were working her oxygen requirement came down fast but the doctors agreed it was time to let her gain weight to grow better lung tissue before messing with her flows.

The days seemed to be going really fast now, we had to try her at breast feeding to see if we could get her off the NG Tube but it was too much for her and her oxygen spike too high.

Day 48 – we were finally allowed to bath her, starting to feel more and more like parents as we were involved in a lot more. She enjoyed her bath so much she fell asleep. Her flow was slowly coming down half by half so we didn’t push her.

The next few weeks were about growing and getting stronger, immediate family were finally allowed to hold her think she enjoyed cuddles she always seemed more settled.

Day 73 – we were promoted to Green Area which only meant one thing, home bound!!! Not long now. She was on Flow 3, Flow 2 is the lowest high flow goes we didn’t ever think we would get here. It felt like we had been in special care forever. She weighed 7lbs 8oz gained a whole 5lbs since birth getting a big girl.

The very next day we came in to find out little girl on low flow sitting in 0.1 litres, wow! She was coping really well with it and now on demand feeds not long now until the NG Tube could finally come out.

Day 75 – she was promoted to a big girl cot, the NG Tube was removed and were told because she coped so well we could look at her being discharged next week.

The day we so longed for was around the corner but we had very mixed emotions. What would we do with the monitors? Or the nurses? What if something happened. But super excited we were taking our baby home when 5 months previous we were told she may have never made it to special care.

The next week consumed of learning how to change her nasal cannula’s, watching her and not the monitors which was hard until they turned the monitors off we didn’t realise how much you could tell by looking at your baby and not the screens. Her oxygen had spiked to 0.2 litres but we were told to expect that giving how premature her lungs were. We learnt CPR and her medications and all the other little bits for coming home. The oxygen was installed at home things were starting to hit hard are little girl was really coming home…

Day 82 – was my first night rooming in at the hospital, just my little girl and I as daddy stayed home to get the house sorted for us so we were getting some alone time before we went home. Learning to do everything alone and to my surprise it wasn’t as scary as I had thought.

We spent two nights in hospital before it was discharge day 3 months and 1 day in special care and we were being discharged.

Many many emotions as we said our goodbyes and shared lots of tears I don’t know if they were out of joy or fear. But it was a very wet eyed journey home. We kept it a surprise that she was being discharged so we could settle in at home and adjust to life without the nurses.

First night at home was amazing, we finally announce little girl was home and spent the night watching her thinking is this real.

The next day we met the paediatric nurses, was very overwhelming meeting everyone but was great to know we had people just at the end of the phone. Giving this was our first child who needed extra support to other new babies, we couldn’t help but feel nervous!

Life at home has been amazing, we have cherished every memory and enjoyed every minute. Her development is exactly where our consultant would expect it to be for her corrected age, showing that the bleed on her brain hadn’t effected her development.

We’ve had a few A&E trips but thankfully neither lead us to hospital admission, in-fact I am sure some of them were more for peace or mind if anything.

She came off oxygen completely in February 2017 just a month after her 1st birthday and we haven’t had any oxygen scares. We were advised to expect her on oxygen until she was 2 if not longer but our princess always did things her way.

Her PDA is still slightly open but we’ve managed to escape the operation route, with regular check ups the consultant is happy enough to let it close alone. We won’t be back there for another 2 years.

She is now 21 months actual / 18 months corrected. She’s walking and talking. You wouldn’t think looking at her now the tough journey she has been through some people are even shocked when we explain she was 3 months early. She now weighs a massive 24lbs she has always been good at gaining weight until she started got very active but again no one has worries.

She’s such a cheeky, happy, independent little girl. The weeks have went by in the flash of a blink, we still look back and are shocked that she was ever that small it just doesn’t seem real.

We couldn’t thank the team at SCBU for everything they did for our little girl the nurses, the doctors, everyone from tiny lives and even the cleaners. We got through them 3 months because of the support we received and being informed everyday on her progress and what to expect weather it be good or bad.

We also couldn’t thank the parents on the buddy group enough for getting us through the days we had worries, it’s amazing to speak to parents who know what we’re going through and can help us with any questions we had. Even the stupid questions we may have had.

Again a massive thank you to everyone.

From Natalie, Andrew & Rhiannon-Ray xxx

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