I apologise for the length but it is copied from the original that i wrote last week and i don't really want to shorten it. I lot of people reading this will already know but there are some that won't. I also apologise for those that are getting fed up reading about Isaac and wondering where the cake and camping part of the blog are - i promise i will not always talk about Isaac but this month is a particularly hard month and at the moment it is what i need to write about.
I was just under 24 weeks pregnant when i started feeling something wasn't quite right. I didn't know exactly what but i just felt ill. I felt amazingly tired all of a sudden and was having bad headaches. I went to see the gp as i was due to go on holiday in a few days and wanted to make sure it was ok. The gp made me feel like i was being very silly and over reacting. He said that it was perfectly normal to be tired and have headaches during pregnancy and that i should leave his appointments for ill people. He didn't check my blood pressure or do any other checks. He made me feel very silly and i went home and packed to go away. I was 24+1 weeks when we went away to Cornwall. We were camping for 2 weeks with my 2 nieces and a large group of friends. I didn't take my notes with me - nobody had told me i should take them everywhere i go so i didn't think it at all necessary. We had been there 2 days when i started to worry. Isaac hadn't moved at all since we had been putting the tent up on the saturday we arrived. This was highly unusual - he was a very active baby!! I was told by so many people to try not to worry, that he was still so tiny he could have just moved position etc etc. I tried to put my worries to the back of my mind. By weds i couldn't take it any more. I hadn't felt him move since sat and that was 4 days ago. I rang my midwife at home who told me she would call me back. She rang back 5 mins later and gave me the number of a midwife led unit in the nearest little town and said to call them. I did and they asked me to come straight in. The mw there was lovely. She listened to my worries and agreed that it wasn't right. Also, my ankles and hands were badly swollen and she was worried about this too. She listened for Isaac and heard his heartbeat which reassured me! She too agreed it could just be that he was still small and had moved position but she was concerned about other things. My blood pressure was quite high (and it is normally low but she didn't know this as i didn't have my notes - nobody told me i may need them) and my urine had +1 protein. I didn't have a clue what that meant at that point. She told me she was ringing the hospital and i had to go to the delivery suite to be monitored there. I arrived at the hospital and all went mad! They just kept shouting at me for not having my notes with me. They monitored Isaac and he was seeming to be fine, they said my swollen ankles, face and hands were dehydration and i could go home. They didn't say anything about the protein or my blood pressure. I went back to my tent and tried to relax. The next few days i felt really quite ill. I was sick, had diarrhoea, had bad stomach ache and awful headaches. But i tried to get on with it and enjoy the holiday with Justin and the girls. I spent a lot of the time sleeping. On weds the 4th August i was 25+5 weeks pregnant. I was really not feeling well and the car had broken down and was in a local garage. I sent Justin down to the beach with the girls so i could rest as i didn't feel up to going with them. He had been gone about 30 mins when i felt severely unwell. I had shooting pains in my stomach and felt so ill. The next thing i remember was a friend who was staying on the site asking me if i was ok. We couldn't get Justin on his mobile as he had no signal so she sent her husband down in the car to pick him up and he rushed us to the midwife led unit we had been to the previous week in the nearest town. Our friends v kindly watched the kids and the dog. It was a different midwife but she was also very nice and listened to me. She said Isaac's heart rate was quite high and my blood pressure was way too high. She also said i had +1 protein (i still didn't have a clue what this meant) and sent me by ambulance to the hospital. This time at the hospital they took me a little more seriously. My blood pressure was considerably higher than before and i was really quite swollen. That was the first time anyone mentioned the possibility of pre eclampsia. A doctor terrified me by just panicking me (and everyone else in the room) and kept babbling about being transferred to Plymouth as they had a neonatal department. She was shrieking at the midwife at one point and was taken out of the room by another doctor who told her to calm down! They tried to take my blood but it took a long time as i was so swollen and my blood was clotting as they tried to take it. They decided to keep me in hospital and moved me down to the ante natal ward. There they put me on labetalol to try and lower my blood pressure and kept me on strict bed rest. They gave me one steroid injection to help Isaac's lungs in case he needed to be delivered early. The next day i asked the doctor about pre eclampsia and he said it was not that - his words were 'pre eclampsia doesn't happen until 26 weeks so you can't have that. You just have high blood pressure and you are dehydrated'. He was a doctor - i believed him! On friday 6th August we were due to go home, a 10 hour drive - we were planning on driving through the night so the girls would sleep and to try and miss out all the traffic. I was still in hospital and they were disagreeing whether i should be allowed home or not. The doctor came and said that i could go home as long as i rested when i got home and went to see my midwife on tues 10th when i had an appointment. I asked about the second steroid injection for Isaac's lungs and was told i didn't need it. Again, i didn't question this, he was a doctor. I believed him. We drove home and arrived about 6am sat morning. I went straight to bed and stayed there until sunday morning. Early hours of sunday morning i woke up having difficulty breathing. My chest hurt so much. We read the side affects of the labetalol and it said if you had breathing difficulties to go straight to a&e, so we did! Both us and the staff at a&e thought it was side affects of the labetalol, but just as a precaution they decided to send me up to the antenatal day unit to be monitored. The midwife up there took one look at me (i was so swollen i looked like a michellin man) and said it was pre eclampsia. I told her that it couldn't be - i was only just 26 weeks pregnant and apparently it didn't start until then. She just looked at me shocked and asked who had told me that. She did tests and my protein was +2. My blood pressure was so high they were seriously worried about me having a stroke, though i didn't find this out until later. I stayed in, and was told i would be staying in until i had Isaac. I took this to mean i would be staying in for another 12 or 13 weeks!! It wasn't the side affects of the labetalol, it was the pre eclampsia causing fluid on my lungs that made me have breathing difficulties. The staff on that ward were fantastic and explained to me what pre eclampsia was and they kept a v close monitoring of Isaac. On weds 10th August i went for a blood flow scan and they saw that Isaac was getting reverse blood flow. My blood pressure was so high the blood through the placenta was bouncing back on itself. I was told i would have to have Isaac now by c section, they were waiting for me at the end of the ward to take me to surgery. My blood pressure would not stabilise, i couldn't breathe properly and i was really ill. I was told that Isaac would die if he wasn't delievered - he was getting so little blood. I was in shock tbh, i hadn't even thought about this happening for a second. I asked about the second steroid injection and was worried about Isaacs lungs as he was so small - i was only 26+4 weeks. I was told that i had had both injections. Erm...no!! But apparently on my notes it had down i had had the second injection on firday night. I was halfway up the motorway when i apparently had the injection!! If the hospital at Leeds had known that they would have given me the second injection - but they thought i had already been given it. The c section was horrendous. I was so badly swollen that it took 3 attempts to get the spinal block in. They told us that Isaac wouldn't cry. They said he would probably not have eyebrows or hair, he may not have fingernails or toenails and that he probably wouldn't open his eyes. Not because he was ill but because he was so tiny and early. I presumed they would have a screen up so i couldn't see what was happening - but they didnt!! I could see it all so i just tried to look at Justin and not think about what was happening. Isaac was born at 3.50pm on August 10th 2010. He weighed 1lb 13oz. He didn't cry - we never heard him cry. However he did have hair, lots and lots of dark hair! He had eyebrows and eyelashes and when they brought him to me for just a few seconds before whisking him off to neonatal unit, he opened his beautiful eyes and looked straight at me. He was transferred to LGI that night and i had to stay at st james. They kept me on the delivery suite as apparently i was too ill to be transferred to LGI and i was too ill to be on the post natal ward. For 3 days i kept being told i would be moving later that day and i never got moved. They kept changing their mind and saying i was still to ill. It drove me mad. I was surrounded by people having babies. I could hear babies being born all around me and i didn't have my baby. I hadn't touched him yet and i just had a photograph taken by the transport team that moved Isaac. Because i was still on the delivery suite there was no visiting for anyone but my boyfriend. We did persuade them to let my sisters in and my friend - but depending on the midwives i was or wasn't allowed visitors, it was hit and miss. Some were lovely and very understanding, others just didn't seem to care at all. They forgot to give me my medication and moved my buzzer so i couldn't reach it. Eventually 3 days later i got transferred to LGI. It was like a different world. The midwives were so so helpful and lovely. They showed me how to express milk and how to label it to take to the neonatal unit. They also checked my scar for the first time in 3 days! It wasn't good. It was opening up and i had had an allergic reaction to the dressing. The midwife was shocked that at St James they hadn't changed the dressing once in 3 days and they sent me to a new hospital with a dirty dressing on. That day i saw Isaac properly for the first time. He was in the neonatal intensive care and had so so many tubes and machines attached to him. I was scared to touch him. He had a lot of problems. He couldn't regulate his temperature, his blood pressure or his blood sugars and he was on a ventilator as his lungs were too tiny. A week after i had Isaac i had to go back to surgery. My wound had opened up and was oozing. I had a huge blood clot in it and it had to be opened up, all scraped out and then sewn up again. It was better now though, i was a lot more comfortable and it meant i could spend a lot more time with Isaac as before i was in too much pain to sit on the chairs for more than an hour at a time. Isaac was a little fighter. He was doing fantastically well and they were ready to move him off his ventilator and onto cpap where he could learn to breathe for himself. But unfortunately just before they could do this he developed a hole in his gut due to the steroids he had to have in the beginning and he had to have an operation. When in the op they discovered he had NEC, a gastrointestinal disease that attacks the bowel. He had to have part of his bowel removed and a stoma put in. They were v worried about him afterwards and he had to be kept on the ventilator longer, but he surprised everyone and recovered so quickly. They showed me how to change his stoma bag and how to clean him and change his nappy without disturbing his tubes. It felt fantastic to be able to do something for him and not just watch everyone else doing it all. Unfortunately because he had to be kept on the ventilator longer he developed cysts on his lungs. On 30th August 2010 one of these cysts popped and he developed a hole in his lung. They operated on him yet again to repair this, but we were taken to a room and i knew then that they thought he wouldn't make it. The consultant explained to us that there was a small chance Isaac would recover, but in all the babies he had seen with this problem, 90% of babies didn't recover. Isaac tried hard after his operation. He tried really hard to get his oxygen levels back up but he just couldn't do it anymore. The doctors explained to us that his body could no longer distribute the oxygen properly. We had to decide whether or not to turn off his ventilator. If we chose not to, one by one isaac's organs would have failed due to the lack of oxygen. We couldn't do that. We couldn't put our baby through anymore. He went through so much in his tiny life and he needed to sleep. A very nice chaplain came up from the chapel in the hospital and christened Isaac, and they lifted him out of the incubator (still with all his tubes intract) and placed him in my arms for the first time. He was so light and small! They removed his ventilator and placed him in my arms when we were in the private room they gave us. He died in my arms just a few minutes later. They had kept his morphine tube in so he wouldn't be in pain, and so they came back in to check his heartbeat and pronounced him dead before removing the tube, but i already knew he had gone. I wish so so many things could have been different. I wish i hadn't been told i couldn't have pre eclampsia, i wish i had been taken more seriously when i said i was ill. I wish i could have had the 2 steroid injections. Whether it would have made a difference we will never know now. I wish i had not been seperated from my little boy for 3 days. It was unnecessary and caused far too much hurt and stress. I wish the ALL the midwives at St James had been as nice and caring as the ones at LGI and not just one of them. I wish things would have been so so different and i wish my baby boy was still here with me. The day Isaac died the staff on the unit were so lovely and caring. They gave us a private room and keys for it and they allowed our families to come and see Isaac. We could have anyone we wanted there but unfortunately Justins family were too far away. I wish they could have been there and spent some time with him too. Isaac's grandparents had been up to see him the week after he was born but its not the same. The staff really couldn't have been any nicer. They helped us bathe him and dress him and they wrapped him in a beautiful blanket and we placed him in a tiny moses basket. They took his footprints and handprints and a lock of hair. They even sat and cried with us at one point which meant a lot to me. It showed that Isaac was not just another baby to them, he meant something. Unfortunately that was it. The day we left the hospital and left our beautiful baby there was the day we were forgotten about. We had no bereavement midwife. Nobody called and asked how we were. Nobody checked how i was or how my scar was healing. We were just left. When you leave hospital with your baby you get midwife visits, health visitor visits. When you leave hospital without your baby you get forgotten by hospitals and doctors. Nobody wants to see how you are, or at least that is how it feels. |
