Weʼre raising £5,000 to raise money in honour of our little princess who lost her battle at 6 days old.
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We would like to raise money and raise awareness of PPROM- Preterm premature rupture of membranes and BWS- Beckwith-Wiedemann syndrome.
Our story in depth:
It all started when we decided we would have another baby shortly after Tierney turned 1. A few months later and we done a test and found out I was pregnant. This was exciting and what we wanted. Having had a very straight forward and simple pregnancy with Tierney our first, we thought all pregnancies are different but was hoping for the same.
We went for our first scan and was told we were a little to early only around 11 weeks. So getting everything seen was hard, but was assured it all looked good at this point. We went back 2 weeks later which would be October 2018 at our 13 week scan we went in and we were told that something didn't look normal around the stomach area of the baby. This could have been 3 conditions: gastroschisis, exomphalos or a hernia. We needed to go to Newcastle IVR fetal medicine unit for a scan to check. We went there and was told straight away that this was exomphalos and with this it can bring other abnormalities such as triploidy. I asked if it were possible that this can be mistaken for a hernia but was told definitely not. Triploidy is a chromosomes defect which means our baby would have 3 sets of chromosomes (69) which is not possible to survive with. Longest case on record is 10 and a half months.
We were asked at this point about taking a CVS test which is a needle through the belly to take a sample of fluid from around baby to test the chromosomes. We were also asked at this point if we would like to terminate the pregnancy. We refused termination before we knew any other outcome. So we took the CVS test and waited. We had to wait for around 2 weeks for results. We were sitting in the car when we missed the call and phoned back. We are told that the tests came back and it's all clear and no abnormalities what so ever. The stress of the last 2 or 3 weeks was somewhat gone. Such a relief to know it was just the exomphalos which was easily treated. Known this made us break down with overwhelming emotions. At this stage we decided to find out that we where having a little girl.
We have a few check ups between Carlisle and Newcastle, all looking ok and no further tests being done.
Until December 2018: At 19 weeks we found out that my waters had broken (PPROM) and that I could go into labour at any time. We were told that night we would probably miscarry the baby and was offered another termination. We then asked a higher doctor who said we will just take it day by day for as long as possible. The chances of making this full term are very slim. Normally 50% give birth within a week. After this is 50% everyweek after that again. We had to be kept monitored twice a week. Bloods, heart rate, blood pressure and temperature. Also checking baby was ok. This was to look for any signs of infection, if there was any signs that show they would have to deliver baby. With the waters breaking it would mean I would leak fluid. Leaking varied from every couple of days to then being every day. It started from being a clear lycra to blood stained which meant that I was up and down at the hopsital checking that there was no sign of infection and also that baby was ok. It felt like we were never out of hopsital, there was always something that would come up which meant that we had to get transferred hospitals. Everytime this happened it through our life in the air with doubt and worry.
We made the big milestone for the doctors at 24 weeks where as stated above we would have another emergency rush to Newcastle. We got there and they were talking about delivering baby. We got told the babys heart trace wasnt normal and was told it could be best to deliver. At this early stage chances of survival where close to zero, but also if we kept the baby in it would probably pass also. We went for more tests and scans. The fetal medicine team were happy and said it's ok to carry on and leave baby where she is. This was a relief to us after what we had been told. The fetal medicine doctor spoke about other abnormalities that could be checked for at this point using the same samples taken previously. Genetics testing and MRI scans. None of this ever came to being done as another doctor from the unit was happy with everything they had seen. At this point while still in Newcastle I got 2 rounds of steroids to help with the babys lungs try and mature just incase she came early.
Through out the whole pregnancy we were asked 3-4 times if we wanted to stop the pregnancy and we always said no, there was never anything wrong with the babys heartbeat so why would we give up.
Shortly after we got transferred to Glasgow and was kept there for a week, at this point we decided to transfer our care to the Queen Elizabeth hospital as it was closer to family and had more support. All was ok a few scares in and out but we got to the 28 week point which is what the consultants wanted.
On February 8th I went in for my regular check up and everything was fine until I was put on the CTG to check the babys heart trace. Our consultant was not happy with the babys heartbeat and decided it was time for a C-Section. This was a shock but also exciting and very worrying. My partner was at work back in Carlisle when I called, he had to leave and rush to the hospital. Luckily there was a few people and a few emergencies in front so he made it in plenty of time.
At 19:09pm our little girl Carrigan Kathleen Ogilvie was born at an astonishing 5lb 2oz. We were amazed by her size thinking at 28 weeks 6 days for being so premature that this was amazing and would help her. In the deliver it felt like an eternity had passed while they worked to help Carrigan with her breathing. Once they had the tubes in place we would be allowed a brief look at our little miracle. That night Carrigan had a very tough start to life where it was not looking good for survival but she fought so hard to get better. After 3 days she was showing great signs of improvement when they done and was starting to be taken off some medication to help her. This was an amazing to see just how strong someone so small could be and the amazing work of the doctors and nurses. On Tuesday we nipped out for some lunch and realised I had no signal at the restaurant and went to call tue ward and was told everything is good she is doing well. No more than 25 minutes late we got a call to go back to the ward to speak with the consultant. This sent shock waves through us as we didn't know what to expect but deep down knew this couldn't be good. When we got there we seen she had her little name blanket on her and they said they had taken some photos. This straight away told us the news wasnt going to be what anyone wanted. They had done a brain scan to find out she had extensive bleeding to the brain. This was a major set back in Carrigans health as there was nothing doctors could do and it would slowly start to shut down her body. This was devastating news, we didn't know what to say or ask. We literally just wanted to spend the last remaining time we had with her. We decided as she would not be in pain or suffer in anyway that we would allow Carrigan to decide what happened next. We got put into a private room and family was allowed in to see Carrigan. We had called around and let family and friends know that after all the good news we've had over the last couple of days that it's gone wrong for Carrigan.
The nursing staff dealing with Carrigan where truly remarkable in helping us make as many memories as possible with her. We managed to get cuddles and start using this time as comfort for us all. On the Wednesday we managed to get some family down from Shetland to come see her and spend time with Carrigan. On Thursday 14th of February after 6 precious days with Carrigan we woke up to go in and could see with Carrigans colour it wasnt looking good. At this stage we where told she wasnt passing as much urine and it looked like the heart was starting to prioritize the main organs this is why Carrigans arms and legs started to be colder and a blue/purple colour. We told everyone to who wanted to come to come soon as this was a sign that the end was near for our daughter. We had families get there quickly and they managed to get cuddles. I (Stephanie) had my family in first for cuddles and some time with her. My partner and dad (Sean) then took his family in for time and cuddles. Sean was holding Carrigan when he noticed Carrigan was twitching weirdly. He passed Carrigan to his sister and went to speak with the doctors. They weren't sure as nothing on screens had changed but he knew it was a sign of seizures that was possible with her condition. He noticed once his brother got cuddles that her heart rate had dropped from 170 to 120 and knew this wasnt normal. We got the consultant in and asked everyone to leave. At the point we got told to bring mother (stephanie) back into the room. At this point we got told the heartbeat had dropped to around 50bpm we got offered CPR to help prolong Carrigans life but we decided this wasnt fir the best. As we always said we brought Carrigan into the world as a little miracle who fought so hard and we would allow her to decide when she wants to leave and give us a sign of when it's time to turn the machine off. This was the sign Carrigan gave us that she has had enough and wasnt able to fight an longer, so with a huge lump in our throat and pain in our hearts we turned off the ventilation machine and let Carrigan go in her own time.
We are raising money for these causes and for the great work the NICU done with Carrigan and for us as a family throughout it all. We will also be donating to the Ronald McDonald house in Glasgow as they provide excellent services to familys. Within around 5minutes Carrigan passed peacefully in our arms.
At this point we couldn't face family and the consultant went and told them that Carrigan had passed.
From here the staff of the NICU got everything done possible to help create more memories and keep Carrigan beside us for a little longer. The set up a cuddle cot to help keep Carrigan cold. They organised photographers and staff came to do casts of hands and feet. They organised a little memory box and accompanied to any of our needs possible.
The Ronald McDonald house where outstanding. As we stay in Carlisle, the house provided a room for us to stay in away from family to process everything from the birth and after the death on our own. With the situation and Carrigan being here for such a little amount of time we didn't have the chance to stay in the house long but they staff knew the situation and again accompanied to any of our needs. After Carrigan passed we thought we would need to pack up and leave but that wasnt the case we where allowed to stay as long as Carrigan was still at the hospital. We left decided to say our goodbyes to Carrigan on the Saturday and even then the house allowed us to stay longer if we needed it. They also stored some things for us until after the funeral as we had so much more stuff due to being in Glasgow for weeks before the birth.
We found our after she passed away that she had BWS- Beckwith weedamin Syndrome and thats why she was on the larger side for her gestation and also had a large tongue and exomphalos
This whole situation affected our immediate family massively. Not only through stress and worry but the constant travelling between hospitals. As we have a little boy under 2 already it was hard to be going to hospital late at night and early hours with him so family stepped in and helped massively with this.
This is the first 5k we are doing for our situation. This is so that Tierney could also take part. After this event we have a few more events to be doing and organise. Sean and his work are looking to hold a football match at Carlisle stadium and possible do walks around the lakes. We are then doing the RBS great Scottish run around Glasgow. Me (stephanie) and a few other family members will be walking the 10k in this event while Sean and his brother and possibly two cousins while be taking part in the half marathon. We will be doing this event dressed as Disney princesses in memory or our own little princess. In October Sean is also signing up to do the forth rail bridge abseil with the Ronald McDonald house.
The NICU have been great through everything and cant thank them enough. We have visited them once since to donate some arts and crafts equipment to help any further families in our situation which we will continue to do. As I write this we are still waiting for an appointment to go back and speak with the consultant at the NICU to answer any questions we may have and to check and see how we are doing..
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