I continued to have small amount of fluid loss with, and at times there was blood as Dr Penman told us about. At last we had some answers to what was happening to my body we relaxed and started to enjoy being pregnant again. We already had a private gender scan booked for the 7^th February 2018 with window to the womb. We debated going as we had already been told the gender, my husband made the decision that we would still go and enjoy this scan and look forward to seeing our girl without the added worry about the fluid loss and bleeding like before.
I’m so glad he did.

Wednesday 7^th February is the day our lives came crashing down. We arrived at window to the womb and were shown into the scanning room. We were so excited to see her and finally confirm that infact she was still a she. I lay on the bed and excitedly lifted up my top, the sonographer placed the jelly and probe on my growing bump and her face quickly turnt serious. My heart sank. I knew my fears were about to be confirmed. I looked up at the scan on the two big tv units on the wall. Where was my baby? I could just make out a slight flicker of her heart. The sonographer then said the following “I’m so sorry I cannot proceed with your scan I’m afraid there is no fluid surrounding your baby, your baby is in a kelp position and I cannot make out her body structure let alone her gender, I’m so sorry we need to refer you straight to hospital.”

My heart sunk, I felt sick, I couldn’t stop shaking and crying.  My husband drove us to Medway hospital where we had a scan with a consultant who confirmed there was no fluid surrounding our baby. I had suffered a thing called PPROM – Preterm Premature Rupture of the Membranes. He proceeded to tell us this was not good and the best option would be to terminate the pregnancy as there was absolutely nothing they could do and my body would naturally go into early labour in the next 24 to 48 hours. If it didn’t I was at serious risk of getting an infection called chorioamnionitis, an infection of the womb. This could turn sepsis extremely quickly and both our lives would be in danger.

They told that us her limbs could be deformed as she had no fluid to create room for her to grow, and if we made it past viability she had a 1% chance of survival as her lungs would not be formed as amniotic fluid is crucial in the development of baby’s lungs. He told us she would probably be a neonatal death as she would not survive labour. We told them there was no way I was terminating and I would fight for my baby till the end, whatever the outcome. We wanted to give her a chance of a life, if I went into labour before 24 weeks at least we knew we had done everything we could for her and if it was after 25 weeks we had done everything and I knew the doctors would do everything for her too.

We were sent home with a bleak outlook, told to come in every week for blood tests to check my infection levels if it was to start to rise then they would override my decision and induce me as it could be deadly for both of us. I also had to come in every 2 weeks to have a scan.  Every scan we had we had no measurable fluid around our daughter and every scan we were told the bleak outlooks and they kept suggesting a termination. But every scan our daughter continued to grow, our daughters heart continued to beat. She was fighting, so we would continue to fight with her.

I got home and broke down with my husband. Letting my family know what we had just found out was incredibly hard. They all supported my decision and that’s when I started my research into PPROM. I found several blogs and websites with information on some suggesting bed rest and drinking 5 litres of fluid a day to help replenish the fluid when it comes to PPROM.

While researching I found a support group on Facebook called – Little heartbeats – Making Pprom Awareness-. This group was our saviour. So much advice, so much experience, and so many stories. Once I joined this page they asked me for my address and I received a free support pack in the post, with valuable packs of information, flyers, wristband, relaxing adult colouring book with pencils, and the most beautiful teddy that we could record our daughters heartbeat and put it inside the teddy for a keepsake in case we lost her too soon.
Such a thoughtful gift. This helped prepare me for the fight ahead, I will always be grateful to Ciara who runs this group.
You can find more info on Little Heartbeats website.

On the 6^th march, at 20 week I was admitted to hospital with a very heavy fluid loss and a big bleed. I felt extremely poorly, we thought this was it, time to say our goodbyes. Bloods and swabs were taken to check for infection and I was giving a course of antibiotics and monitored for 5 days until results came back. In those 5 days I’ve never prayed so much. I was angry why did my daughter have to suffer like this, even though the doctors told me it was nothing I had done that caused this I was blaming myself, blaming my body. It was a hard 5 days but the results came back clear, no infection and the bleeding had slowed down too. I was able to go home and continue fighting to reach 24 weeks.

The day we had been waiting for arrived and we felt such a huge relief. We finally reached 24 weeks, 10 weeks after my waters broke, we were finally at viability this felt so over whelming. We were booked in to have my steroid shots 2 injections 24 hour apart to help speed up lung development. By this week I started having strong Braxton hicks and I just started feel tired and drained, I new deep down it wouldn’t be long. We had our first meeting about delivery with our consultant it felt surreal.  He told us if we could get to 34 weeks her survival rate would be 0ver 98% and he would deliver her at 34 weeks no later. After 28 weeks 50/50 and below 26 weeks 1-5% chance of survival, He told us the safest way to deliver a baby this early without fluid is natural. He told me if he had to perform a csection before 28 weeks it was life threatening and I wouldn’t be able to have anymore children. This petrified me.

Sunday 15^th April 2018, 25 weeks 4 days,

 

I started getting what I thought was strong Braxton hicks, but they became stronger and every 2-3 minutes. It was labour, it has started. We headed to the hospital and was hooked up to the monitor on delivery suite, I had to have this drug called magnesium sulphate which protects the brain in premature babies. Before I knew it I was Monday 16^th April my labour was on off all night and at one point there was talk of sending me home. My contractions started up again and by 230pm I was 10cm dilated and emergency buzzers going off, an Oliver fisher team was in and out of my room with an incubator at the ready. I was told to start pushing, this is when it all started to hit me, I started panicking, this was really happening I was about to deliver my tiny 25 week old baby. This was when I would know the outcome of our little miracle. I pulled myself together with the help of my husband, my mum and my amazing midwife Helen.

At 3:02pm on Monday 16^th April, our tiny little Anaiah Faith made her arrival into this world, kicking, screaming and crying.

She weighed a tiny 895grams, 1lb 15oz. The doctors couldn’t believe what they were seeing. I was uncontrollably sobbing as I couldn’t believe how small she was. Seeing our tiny baby laying on the bed as they cut her cord was overwhelming. All I can remember is the doctors telling us “she is a feisty one”

Anaiah was intubated at 14 minutes old after 3 attempts, they brought her over to me for a quick kiss on the head before they transferred her to Oliver Fisher Neonatal Unit where they put her on a ventilator and started IV antibiotics. She was wrapped up in a special plastic bag that would keep her warm.  We were told we had to wait while they settled her in the incubator. 5 hours later we where finally allowed in to see her. Things were not looking good her incubator was surrounded by doctors and nurses and her Machines where all flashing red and alarming constantly.

 She was on a machine called HFO High frequency oscillator, this made her whole body shake. It delivers breaths much faster than a standard ventilator. A standard ventilator can deliver 20-60 breathes per minute but a oscillator can deliver close to 1000.

Her consultant came over and explained to us that Anaiah had taken a turn for the worse and there was no more they could do for her. She had developed something called PPHN – Persistent Pulmonary Hypertension Of the Newborn, Its failure of the normal circulatory transition that occurs after birth.

When a baby is born they take in a big deep breath or they cry and their lungs fill up with air instead of fluid, when the lungs are filled with air the Blood vessels which take blood from the heart to the lungs start to open up, and this means that oxygen can be carried from the lungs, back to the heart, and pumped to the brain and rest of the body. Anaiah’s lungs were so premature that her vessels didn’t open up properly so built up pressure, this stopped the oxygen getting to her brain and the rest of her body properly. This was life threatening.

Oxygen was just seeping through her lungs it wasn’t staying in them enough to expand the lungs. They told us if her oxygen level continued to drop this would cause her heart to be under extra pressure. If this was the case they would withdraw assisitance and let her pass away.

This broke our hearts. The last time we saw her she was pink, crying, wriggling, to now seeing her tiny body covered in so many wires, montitors, tubes, and laying there pale lifeless and her little body shaking no parent should ever see. We asked her consultant if they had used Nitric oxide on her yet (something I researched while pregnant in the support groups this is what saved most babies). He told us no and that he believed it wouldn’t work on a baby as young in gestation as Anaiah.

We pushed it to be used on her as we felt they hadn’t tried everything and we weren’t prepared to give up this fight yet. He agreed and they set up yet another machine, next to her incubator. We were offered the chance of getting her blessed by the hospital pastor and we agreed, we phoned our families and they came to support us and be present at the blessing. They then had to leave Intensive care and we were left there watching our daughter literally fight for her life, I broke down in my husband’s arms why her? Why did she have to go through this it wasn’t fair.

A touch and go hour passed and we noticed her sats started rising her oxygen levels were rising her heart rate was increasing.

We stayed with her all night and saw her slowly improve. Her consultant came over and said he was outstanded by her progress and the oscillator was doing its job on her tiny body.

Relief I broke down again with happiness.

From then on things only got better and better. Our daughter had so much fight in her. We told her every day she was loved and we wanted her at home with us and her sister. We read to her and spoke about our days and future plans. Day 4 the nitric oxide was stopped and she was put on a ventilator where she remained on it till day 11. Our little girl started breathing over the ventilator from day 5, it was causing the machines to constantly alarm and not read properly so they decided to take her of the ventilator on day 11.

This was the best day we finally got to hold our precious little girl. There is no other feeling in the world then having your baby skin to skin on your chest. I could finally feel her breathe, smell her, touch her without asking for permission.

She was put on a different type of breathing support from then on called Vapourtherm and she stayed on this for 33 days.

13^th June At 1 month old we got the best news that she had been moved down to High dependency Unit. She was still on vapourtherm but plans were to put her onto nasula cannula oxygen while in HDU unit. We were so excited as it was a big step to going home she no longer needed intensive treatment and that was a big deal. We walked into HDU with 2 massive smiles on our faces the nurses new which baby was ours.It was so nice being in a relaxed environment there was soft colourful lights and quiet very quiet compared to ITU. Things were going so well, we were deep down expecting something to go wrong. I came in one day and her machine kept being and flashing red her heart rate kept going very high 231bpm at some points. The nurses called the doctor and the doctor took bloods to complete a sepsis screening, this came back clear they kept monitoring her over the next week her heart rate episodes continued and her doctor contact GOSH for advice and asked for her to be seen.

This felt like such a big blow, she was doing so well. A specialist from Great Ormond Street Hospital came a week later, observed her and undertook a 24 hour ecg, which showed some dips and rises which were due to her prematurity. Another little blow that was quickly resolved. We could carry on with staying in HDU.
On 27^th may the doctors made the decision to wean Anaiah of her vapourtherm as her saturations were great. This last week was full of so many changes but we were so proud of how well she was doing.

1^st June was our next milestone, our little Anaiah was finally moved from her incubator to a open cot in full vest, babygrow, and cardigan. She finally looked like a “normal” full term baby. It was the first day her sister and grandparents were able to hold her.

1^st of june was a special day.

5^th June our extraordinary little girl was moved down to the final room before home. Special care, this was the room you dream about in intensive care.

Home stretch was finally in sight.

Special care was the room for feeding and growing and boy did Anaiah like her feeding. She thrived and thrived and started putting on weight. After she grasped the concept for feeding they started weaning her oxygen down to prepare for home. They started Anaiah on 00.8l of oxygen and quickly got down to 00.3l again baffling the nurses and doctors. They completed a Sat study to check she had the right amount of oxygen in her body which came back not good, she had to be increased again to 00.8l and have tests done to see why her body started struggling. The results were that she had a build-up of fluid in her body and this was compressing her lungs.

They started her on 2 week course of diuretics medication to help her pass the excess water. This started working and they planned to wean her .01 a day. She tolerated the wean until they got to 00.3 again she started showing signs of distress and they stopped weaning her. They bumped her up to 00.6 and started talking to us about home oxygen. This is when it finally hit us that we were finally going to be taking out miracle home.

The next few days were abit of a blur and happened quickly once the doctors okayed the home oxygen, it was arranged for 2 days time. They asked us to room in ( stay on Oliver fisher unit in one of their 3 rooms for parents)  to have time to adjust to our new baby and learn her colouring, sounds, grunts,  breathing and feeding patterns. We roomed in on Tuesday 10^th July it felt incredible but it petrified us it was the first time she was off her monitors for her heart and oxygen levels.

I didn’t sleep that night I kept thinking something bad was going to happen. Everything was fine and it was Wednesday 4^th July before I knew it. We had oxygen being installed at 11am so stayed for doctors round and then we were to shoot off to have training on that when it was installed ready for whenever she was ready to be discharged. Drs round started and to our surprise the doctors said that she could go home that day! We were shocked but so excited.

She had all her new-born checks, hearing tests and was finally being weighed for the last time on Oliver fisher, 5lb 3oz was her discharge weight. Walking back into Oliver fisher with her car seat was incredible. We were finally taking our baby girl home after 3 months. What made this day even more special is that it was mine and my husbands 3^rd wedding anniversary. It was the best present in the world.

These last 3 months have been a roller-coaster of emotions, the most difficult and testing time I think any person can go through, to see your child literally fight for life fight for each breath is singly the hardest thing any parent should witness. From then to where we are today is purely a miracle. At no age should you have to think about if you’re going to bury or cremate your child but us at 27 and 28 year old had to prepare for that possibility. Oliver fisher neonatal unit is the most amazing place I’ve ever been. The doctors and nurses are walking angels, and I couldn’t possibly thank them enough for everything they have done, not just for our girl but for every baby who has been wheeled through their doors.

Since being home 2 and half weeks, Anaiah has continued to thrive and is now currently 6lb 13oz at 3 months old. She does have chronic lung disease which can cause problems in the future and we are awaiting some appointments to check her kidneys as she was on diuretics medication and she needs another hearing test. She also needs regular checks of her Haemoglobin levels as she may need a blood transfusion in the near future but other than that our little miracle is thriving and is just where she should be. At home with her Mummy, Daddy and big sister!

PPROM is something Anaiah has, but she is such an incredible tiny fighter.

I for one had never heard of PPROM before. Thankyou so much for sharing your story and being so thorough, Chantalle. I felt every emotion I possibly could while reading and I know my readers will too.

I adore taking your Family portrait, you’re all so amazing!