Jake's Story Part 2

Mandy's story continues from yesterday....

Jake at 1 week old

At LGI the following morning we both felt sick as we waited for the consultant to see us. Finally we were called in to the room and I was in tears before I’d even got onto the bed to be scanned. We explained what we had been told and then the scan began. Amazingly the fluid levels had risen slightly. Afterwards we were told that there was now a very small but significant chance that we could have a healthy baby. Dean mentioned 50% but the consultant immediately said no it was much lower than that but there was a small chance. On hearing this our decision was made. We would continue with the pregnancy, I would be on bed rest for the remainder of the time and we would return to Pontefract the following day to put a care plan in place.

We left Leeds feeling slightly more positive although we knew we had a testing time ahead of us. At Pontefract the following day it was decided that I would attend the day unit twice weekly for blood tests and swabs to screen for infection. I would also have fortnightly scans and consultant appointments.

The next several weeks were one huge long scare. A week after making all these decisions I began to bleed and was admitted to hospital. We were shown around SCBU, given steroids and survival rates for a 24 week baby. After 4 days with no contractions I returned home only to be readmitted several times in the following weeks. By now I was losing fluid almost as fast as it was being produced and it was nearly always mixed with blood. I was on a constant countdown to 28 weeks as this is the stage that our SCBU accepts premmies.  Before this time and I would need to be transferred.

Once I reached 28 weeks I relaxed a little but when I was 29+2 I woke in the middle of the night with regular contractions. I rang labour ward and was told to get there immediately with my bag as SCBU was full and I would need to be transferred if I was in labour. On examination they found my cervix was long still and not dilated. The contractions continued though for a couple of days so I was kept in as a precautionary measure.

On the Saturday I was allowed home. I was very uncomfortable and finding it difficult to walk properly. I put this down to the fact that there was no fluid protecting the baby and that meant it would be bumping against me. The contractions continued and became even more regular the following day. We were going to have dinner with my Mum and Dad at their house. It was a treat to be going to lie on a different sofa for a change! When there the contractions were 10 minutes apart but as the hospital hadn’t been worried the day before I decided not to worry either. Whilst eating dinner they became more regular to the stage where they were every 3 minutes. At this stage my Mum insisted we went straight back to hospital.

On arriving in labour ward I was given a speculum examination. This is the only type of examination they will do if your waters have gone to avoid infection. The doctor said I was in labour and at least 2-3 cm dilated although he couldn’t see fully. We were both terrified. We were sure it would be another false alarm ? it was much too early for our baby to be born. The next bit of bad news was that SCBU was still full and they would need to find a cot and transfer us ASAP. This couldn’t be done immediately though as I was contracting too much and had to be given drugs to slow the labour down. I was also given antibiotics in case an infection had set in. Dean was rushing around phoning people. We didn’t even have my bag with us as we’d come straight from my parent’s house. My Mum and Dad arrived with my bag at roughly the same time as the ambulance. We were relieved to hear there was a cot at St. James only 20 miles away. We were transferred with flashing lights and sirens in an impressive 19 minutes!

I was devastated that we’d had to be transferred. After spending several weeks in our local hospital I felt like I knew the midwives and was confident that I would be well looked after. Arriving in a strange hospital when you’re in premature labour is an extremely frightening experience. The first midwife looking after us did little to ease this. She just kept asking why I wasn’t asleep and gave me 2 co-codamol for the pain! I explained that I was in a lot of pain and it was only much later that I got an injection of morphine. Although this helped she was still insistent that I should be asleep. I kept saying the pains were worse and more regular but she didn’t examine me or do much to ease my worries. I wasn’t even offered gas and air!

At 7.30 am the nurses handed over and the new midwife came in to see me. I told her I was in a lot of pain now and felt that I needed to be examined. She said the doctors would do this when they did their rounds at 9am. At 7.50 am I said I could wait no longer and needed to push so she gave in and finally examined me. On doing so she said the head was right there and the baby would be born very quickly. However, I still couldn’t push as she hadn’t set up and she needed to call the paediatric crash team. This all happened very quickly and with 3 pushes our beautiful son was born at 8.06am.

First cuddle

 It was only when he was born that the fear closed in on me. What if our baby had no lung tissue as we had been warned? What if he didn’t live? Then we heard a cry. I know everyone says that is the best sound in the world but it really was for us. After all this worry our baby was here and alive! The paediatricians quickly showed us Jacob Lewis before whisking him away to NICU.

He was in hospital for 52 days and is now 4 years old and is at school. The only ongoing issue with his health is asthma. He really is a miracle ... I hope someone gets some inspiration from our story.

Jake's Story - Part 1

My friend Mandy submitted this story to me for World Prematurity Day. The response I had was over- whelming so I decided I would post this story at the end of November to mark the end of Prematurity Month. Here Mandy tells the story of her pregnancy, and the birth of her son will be in part 2 tomorrow

Our story of prematurity is all down to PROM (premature rupture of membranes)  I have chosen to focus on the pregnancy rather than our journey through NICU.

We don't know when Prom happened to us - I have guessed at 17 weeks as that is the time the doctors presumed it happened. It could have been much earlier however we just know it was between 12 and 18 weeks. I hope this story helps someone going through this horrendous time. Please feel free to contact me. Apologies for the length of the story but I know from reading others that details are important when you are in this position ...

On December 13th 2006 I found out I was pregnant. After several months of trying to conceive we were absolutely delighted. The first few months of my pregnancy were uneventful, just the normal morning sickness and tiredness. When I reached 18 weeks I received a phone call which was the start of the most terrifying time of our lives. It was a nurse to say our triple test results indicated that our baby could have spina bifida and we would need a scan later that week to find out. That Friday we went to Pontefract for the scan and after about 20 minutes of scanning the radiologist went out the room. When she came back she said that we needed to go and see a midwife downstairs in the day unit. I was now beside myself with emotion although when we got downstairs the news was fairly inconclusive. The midwife said that the scan showed the baby had hardly any amniotic fluid surrounding it and they could not see clearly so we needed to be referred to a specialist in Leeds. The next appointment was the following Tuesday. After a very sleepless weekend spent reading up about low amniotic fluid we went to Leeds feeling very pessimistic. All the internet sites we looked at gave a very poor prognosis for a baby in low levels of amniotic fluid so early in pregnancy. I read that a way to help raise these levels was to drink as much water as possible. In our mind this was the only way I could help this unborn baby we already loved so much survive. So for the remainder of the pregnancy I drank between 3 and 5 litres of water a day.

Jake at 12 weeks

At LGI the consultant scanned me and the news was not as bad as we were expecting. Our baby looked perfectly fine to her (no spina bifida) but she could still not see very clearly as the fluid levels were still low. She was not worried about this, however, and said they would keep a close eye on me but they thought the outlook was not too bad. We left feeling quite positive with our appointment booked in two weeks. In these two weeks we got back to some normality and, as a teacher, I returned to work. I had taken the few days off between the last two scans as I didn’t feel emotionally able to cope with work.

When the day arrived for the next scan we were quite relaxed and we decided that my husband didn’t need to attend this scan as he was using up his holiday allowance extremely quickly! Accompanied by my Mother in Law I went to Leeds on the train and back to LGI. As soon as the consultant began the scan I knew something wasn’t right, the doctors mumbled between themselves before finally telling me there was hardly any fluid again around the baby and this was very bad news. We were told that there were three possible causes of low fluid levels and they needed to find out which one it was. We were told that the first thing they needed to do was a chorionic virus sampling (CVS) test to rule out a genetic problem with the baby. Earlier in the pregnancy I had been opposed to any such testing but now it seemed like a necessity. I rang Dean (my husband) in tears and we decided I would have the CVS test done there and then. I was terrified that our baby would be harmed and we were very lucky that the procedure was uneventful and the following day the results came back showing there were no genetic problems. Another cause of low AFI (fluid levels) could be lack of kidney function or bladder problems but again the scan had shown this not to be the case.

Jake at 18 weeks

We now had a two week wait until we saw a consultant. In this time we were both confused as to how I could have low fluid levels as the only remaining possible cause was premature rupture of membranes (PROM). We were sure this wasn’t the case as I would have known wouldn’t I? The day finally arrived for the consultant appointment at Pontefract. We naively presumed that this would be a very quick appointment as he had never scanned me and did not really know our history. We guessed (wrongly) that he would just say the consultant in Leeds at the next day’s appointment would give us details and put a care plan in place. So considering this we decided Dean should go to work that day and have the next day off for the important appointment. This was a bad decision, which we both regret now. The consultant that day absolutely devastated me when he told me the chances of us having a healthy baby were very slim and the best option may be a termination. At this stage I was 23 weeks pregnant and our baby was moving around. He also said that I was now given the diagnosis of PROM and as such I was at a high risk of contracting a serious virus, which could harm the baby and make me infertile. I asked as many questions as I could think of through my tears and my Mum was a fantastic support. The consultant said I could go home to ring Dean and make my decision but they would get me into labour ward that day to deliver if I decided upon a termination. I was adamant that I would never terminate this precious baby but the prognosis for our baby was so bleak. We were told that he would definitely be premature and probably within the next week or two, he would probably have pulmonary hypoplasia and he would probably have many limb abnormalities due to being so squashed.

Devastated at the news I went home. I rang Dean straight away. All I could say was “they want us to terminate but I’m not, they have said the baby will probably die.” Dean came straight home, equally distraught. When he got home my Mum explained everything that had been said. At this stage our opinions began to differ for the first time. Dean said he had to think of me and if I was at risk of contracting a virus, which would not only make me infertile but could threaten my life he had to prioritise me. These factors never crossed my mind. This baby was my priority and there was no chance that I was having a termination. Dean was very opposed to terminating the pregnancy but felt like he was stuck in the middle and did not know what to do. We spent a long afternoon and evening discussing our options, crying and researching on the internet. In the end we decided we would wait to see what happened at the scan the next day and get a second opinion, thank goodness we did. 

Jake at 19 weeks

Mandy's story continues tomorrow.....

Weekends on NICU

I got involved in a bit of a discussion about this article today on the BBC news website. In a nutshell it says statistics show that there is a spike in death rates at the weekend in NHS hospitals. I would love to know if such figures are available for NICU but doubt there are. The main reason for this is that there continues to be a culture of "normal hours of work" for senior consultants, Monday - Friday 9-5.

I find this baffling and somewhat infuriating, that younger, newly qualified doctors, are supposed to do all the difficult hours, with little experience, and often little sleep, and few opportunities for quality supervision, whilst the consultant who has "done their time" can work "normal hours", medicine just isn't like that.

I remember always feeling nervous on Friday afternoons, when the unit was slightly less staffed, and there were less experienced doctors around. I always hated it when blood tests would come back on a Friday and Joseph would need a transfusion, or new antibiotics, I could just see things going pear shaped when there wasn't anyone experienced around to sort it out.

And indeed, I recall a weekend where things were dreadful (and the consultant came in immediately I might add) but there weren't the additional support staff around and some facilities were closed, and I could see the registrar becoming more and more stressed. On this weekend it was all hands on deck, helping one another out.

And one of the doctors on Twitter suggested that consolidating services in large hospitals is the answer, instead of having lots of small units dotted about, and that the problem is that "we the public" see closures of units and consolidation as "cuts" rather than improvements.

I do accept consolidation and modernisation is necessary to a degree, and our local hospital has been a victim of this, and the unit where Joseph was born and raised will be closed. His (@DrGrumble) feeling is that in larger units this will change, and there will be more experienced staff on duty at unsociable times, which I truly hope is the case. However I have some serious concerns about this "bigger is better" philosophy and wonder if its truly what will happen. I guess for our area we will only know once it starts unfolding.

However, weekends in NICU wasn't all bad. Often times I'd be given more freedom to get Joseph in and out of his incubator on my own. I would get "forgotten" about and Joseph would have longer kangaroo cuddles. An obvious benefit of weekends was that my husband was around, and we could tend to Joseph's needs together, and have time out together, I wouldn't have to sit on the Kylie Hodges memorial bench, outside the nurses quarters!

Every weekend I still spend a minute or so reminiscing about our time on the unit, and the excitement of driving up together to see "our magic boy". 

My Pet Peeve - Oh I Couldn't Do That

My entry into care work was at 15 years of age. A friend was intending to go into nursing and wanted to do some volunteer work at a nursing home. It was summer holidays, so I thought "why not?" And I went with her. At first our main roles were to run bingo, help with craft and gardening activities and reading. However this was in the days before CRB checks and risk assessments and broadscale suing of care providers, and we did some personal care as well, such as assisted mealtimes (back in those days it was called "feeding").

One day I was reading to one of my old ladies. She was embarrassed, she'd soiled her pad and wanted changing. I knew that this was beyond our remit and went to fetch a staff member. This nurse looked down on me like I was piece of dog poo on the floor and said "What? You wipe your own arse don't you? Go and do it". So I did. I got her all sorted out nicely, put clean knickers on her, washed my hands then did her hair and we went out for a walk. I honestly thought nothing of it.

I rather inadvisedly did a Bachelor of Business at University (I have one subject left that I failed over and over again, Business flipping Statistics, my achilles heel), but always was jealous of my friends doing nursing (except when they were doing cadaver work, I like my bodies talking  back thanks). All through university and my one year period of unemployment, I kept my hand in. Not always physical caring but I did advocacy work, occupational therapy with people with head injuries, work with young people. I loved it.

Eventually I got a job working in a "group home" with people with disabilities. I have had other jobs, working in a bank, and working for a health insurance company, and I do like that sort of work too. But my heart is in care work.

But I hate the patronising attitudes I get. And I feel lucky. I get paid for this. There are millions of unpaid carers, doing this for love, looking after parents, relatives, children, little help and no recognition. My heart goes out to kids that don't have a childhood due to the care responsibilities, to grown up kids who give up their homes and their jobs to take care of elderly parents.

I feel priveleged. I do really, it's not just lip service. I get involved in people's lives, I get far more reward than just pay. I said goodbye to a client yesterday, and I do need to be careful here about confidentiality but I want to share this. He's 25. He has Batten's disease.  It's been a delight to transition this young man from hospital into a lovely place where he will be now. He used to say "I can't see the sky", he didn't mean physically as he hasn't been able to see for a long time, but he meant figuratively. His room has massive windows overlooking a beautiful garden. He has the sky back . He put his head into my hand and stroked my other one, whilst I said goodbye and wished him the best. I had a little tear.

He gave me far more than I gave him.. And those of you scared of a little poo, a little wee, and a bit of hard yakka are missing out.

And you know that nurse, fed up, with no time for a spotty faced school girl had a point. You wipe your own arse. Another person's poo is very much like your own. We all have responsibility to care and look after one another. And some of us wear a uniform and get paid for it.

How Not to Talk to a Pregnant Woman about Weight

I got pregnant rather by surprise. I had come off depo provera with the expectation that I would lose weight before having a baby. We weren't using contraception, however, and decided to take our chances. 6 weeks after returning from honeymoon we discovered we were pregnant.

I remember seeing my midwife in a panic and worrying about my weight, she told me not to worry and we'd deal with it, that loads of large women have pregnancies and are fine, and there was no reason to believe that things wouldn't be different for me.

However, they were different, and I knew there was trouble brewing. At 18 weeks I went to the hospital to see the consultant to check all was ok and discuss a management plan. Unfortunately I saw a junior doctor. I was unprepared for the way the consultation was to go. He shouted at me, made me feel like I was a kid. "You are an irresponsible fat person. You will get gestational diabetes. You won't be able to have pain relief as you are so fat. You will have a 10lb baby." He then went on to ask if I'd had a 12 week scan, and said "well it's a wonder they could see anything". And he said "well normally I would listen to the baby's heartbeat but you are so fat, it won't be possible". I managed to stare at him and say "it's alright my midwife heard it yesterday".

He was dismissive of my concerns that I might get pre eclampsia, and basically laughed me out of the room. I came home on the bus, tears coursing down my cheeks. Once I got home I took a deep breath and remembered the old saying "no one can make you feel inferior without your consent" and I rang our Patient Advisory Liaison Service (PALS) and made a complaint. The woman who listened to me was shocked. I then rang my midwife and she made an appointment for me to see the head consultant who put a fantastic plan together, which I believe, played a huge part in the safe delivery of Joseph.

I do feel for doctors, midwives and nurses. I think to address and discuss weight is a very difficult thing, and I don't envy them for the discussions they need to have. However, the basic fact is that increased weight does complicate a pregnancy. Increased weight can be implicated in pre eclampsia, still birth, miscarriage and gestational diabetes. It is important to note that these things can happen to normal weight and underweight women too.

I, you have no doubt noticed, am up front about my weight issues, and happy to talk about it. But, we need to do this with respect and positive regard. The vilification of fat people doesn't help anyone.

As for my doctor, he was called in the be on the crash team for my caesarian section. He was very kind, and very apologetic. And, importantly, he has learnt a lesson about how to not to speak to a pregnant woman about weight.

The Plan - Weight Week

I have a very large amount of weight to lose to be in the healthy weight range. I am currently 113 kilos. (almost 18 stone). According to some charts I should be around 55 kilos, but for now I want to aim for 63, which according to BMI tables is a healthy weight, I think that's more realistic, and then we can worry about the rest when we get there!

I'm going to weigh in once a fortnight and will post my progress here. I think I will probably use "my fitness pal" and share my details through facebook and twitter, but I will wait untiil the New Year to do this. I'm not going to stress over Christmas about everything I eat, but I will be mindful. We'll be in Germany, and we're always active there.

My big focus is on fitness, and preparing for the Bupa London 10k. Initially my focus is going to be on covering the distance and not bothering about time. I plan to walk 5-10k in one go three days a week, when Joseph is in nursery, rather than sitting on here blogging, tweeting and wasting time. My computer time will be in the afternoon as my reward for sticking to the plan!

On non walking/running days during the week, Joseph and I will do an active activity, park or soft play, or another walk. At nap times I will do stretching and strength work.

On weekends I will walk to work, and keep as active as I can.

Food is less of an issue, because when I am active I crave healthy food. I plan to aim for a range of fruit and vegetables and low GI carbohydrates and good sources of lean protein, and keep snacking down to healthy snacks in moderate amounts. I found last time having a "treat" day one day a week was great. I didn't go mad, either kept all my meals healthy and allowed myself one nice treat, a piece of cake etc, or didn't have the treat and had one treat meal. Then onece a month had a "treat week" where I had two of these days. That worked really well for me.

My huge challenge is comfort eating. 80% of the time I eat fine, but when I am depressed or anxious I eat loads of the wrong foods and often when anxious I don't leave the house, thus compounding the problem. I am hoping that by eating well and exercising regularly I can avoid these times, however, I realise that this is going to be an ongoing issue and plan to have a consultation with my GP to go over my plan, and see if there is any help available. I am still on a waiting list for counselling, and I would like to see if I can see a dietician. After all the NHS are saving a considerable amount of money not paying for a gastric band or bypass!

I'm actually really looking forward to this challenge, and completing the run in a better time that last time. I'll be happy to just complete but if I can do it in less than 1:30:00 I will be really happy.

Any support, or anyone wanting to do this with me, I'd love to hear from you. Also, suggestions of motiviating running songs, recipes and walking/running routes around North Manchester!

Why I Won't Have Weightloss Surgery

My BMI is 44. This is classed as morbidly obese. When people find out that I am morbidly obese they are suprised. I eat reasonably healthily, I excercise, I am not the sort of person featured on reality TV who lies in bed and eats chips and cake all day. There are reasons why I am overweight, which boil down to eating too much of the wrong thing and not exercising enough, and I'll go into them tomorrow.

I am being open about obesity as we need, as a community, to get a better grasp of what obesity is and how to help those who are obese, like me. We need to get away from these ridiculous images of obese people being out of control, stupid people, who do not care about themselves. This is not reality.

As someone with a BMI of 44 and high blood pressure, in some Primary Care Trusts I would be eligible for surgery (not in Bury though, funding has ceased in light of the NHS cuts). This rather sobering. I am fat enough to go under the knife.

At times, I have thought about it, especially when my BMI was even higher. But there are several reasons why I wouldn't go down this route.

Firstly, I am an anaesthetic risk, being obese and asthmatic, and I wouldn't want to go under a general anaesthetic unless it was essential surgery.

Secondly, although its hard I know I can lose weight. I know through mindful eating and planned exercise, I can and I will lose weight.

Thirdly, I am concerned, because of the main reasons I am overweight, which I will go into tomorrow, that I would have to have the most drastic surgery, a gastric bypass. I am convinced I would breach the lap band rules and potentially cause myself damage.

I think weight loss surgery is unavoidable and necessary for some people. Especially if you have an imminently life threatening condition that your weight is affecting, or have seriously low mobility and can't exercise. It does annoy me that there seems to be little NHS help for those who want to lose weight the "old fashioned way" but will pay a serious amount of money for surgery.

I truly hope, and will work hard, to ensure I never have to go down this route.