Edward's First Christmas

I've mentioned many times that the Bliss charity has been instrumental in teaching me how to be a mum to a premature baby. One of the mothers who has inspired me, helped me, and encouraged me is Lizzie. During the run up to Christmas I thought it was poignant to share stories of NICU at Christmas. Here is Lizzie, Jon and Edward's story of their first Christmas as a family. 

Christmas Day 2005 was like none other. We knew it would be special: I was supposed to be exactly 35 weeks pregnant with our first child. As it was, however, Edward had been born 10.5 weeks earlier at just 24 weeks and 4 days gestation. Those first hours, days and weeks dragged by in a fearful haze as we didn’t dare hope that Edward could be strong enough to hang on. He had been born dangerously early. The one glimmer of hope was his weight – 1lb 9oz or 725g – very tiny, but very respectable for such an early baby.

Christmas became an important milestone for me and my husband Jon. We knew that, two and a half months after his birth, we should by then have some idea of what the future would hold. Before Edward’s untimely birth we had originally intended to spend the day with my parents, but all plans were shelved and Christmas was officially cancelled. In our heads it became a day of huge significance, because if he was still with us by then, then maybe – just maybe – we would be lucky enough to keep him. We never discussed these thoughts between us, both afraid that if we verbalised our thoughts then somehow we would be jinxed.

We were both so absorbed with every aspect of life in NICU that we barely noticed the run-up to Christmas. We didn’t send a single card; we didn’t buy presents. To us it seemed pointless: the one gift we wanted was a baby who was still alive and was growing healthier and stronger each day. On many days that gift seemed desperately far out of our reach, but as the weeks passed and the many frightening moments became fewer, we both began to believe that we just might get our Christmas gift. On Christmas Eve I dared to go out and buy a Christmas card for Daddy – I was frightened doing it in case something terrible happened before Daddy could receive it. We also plucked up the courage to buy Edward a single small present – a colourful cloth book to put in his incubator. Suddenly in a whimsical moment of hope I decided to dash to Waitrose shortly before it closed and buy up the few items of Christmas food that they had left on the shelves, because things were starting to look more positive, and we could allow ourselves to enjoy a Christmas dinner at home after spending the day with Edward.

One of the key things I remember about Christmas Day was that most of the parents on the unit looked rather blank whenever anyone greeted them with “Merry Christmas”. Although we all knew what day it was, we all had so much more important things to think about and it felt very odd – it wasn’t supposed to just be another normal weekday, but it was to all of us. Edward was still in NICU at the time but was starting to do well – well enough that when the night nurses had secretly dressed all the babies in a Father Christmas outfit and taken photos for personalised Christmas cards, they had been able to include him. His card to us was waiting on the top of the incubator when we walked in. I welled up as soon as I saw the photo of him in his Christmas suit – I have no idea how the nurses made it fit so beautifully because he’d struggled to put on weight and was still well under 3lbs. That photo is one of our most precious possessions and is on display in our home all the time, but also gets included in our Christmas decorations every year!

The nurses had done such a wonderful job decorating each room in the unit, and they were all extra cheerful that day, with Christmas songs playing quietly on the radio in the background. A kind volunteer had managed to get stockings and little presents donated for each baby in there, and we still have Edward’s stocking and cuddly bear now. I must confess that we didn’t keep the hand-knitted cardigan though – I hope I don’t sound ungrateful, but whichever kind soul knitted it, had done it for a baby at least 5 times the size that Edward was and I couldn’t imagine him ever fitting it! I remember actually staring at it in its hugeness and wondering what it was for!

We had a little break at lunchtime and decided to ‘treat’ ourselves in the hospital ‘restaurant’. It was virtually empty, though there was a family sitting not far from us with a very elderly, very frail looking granny who was clearly an inpatient. I remember thinking that this was probably her last Christmas and feeling rather sad for the family. In contrast, I was beginning to feel that this just could be the first of many Christmases for Edward.

Towards the end of our day with him, we were chatting about something and Jon finished the sentence, as we had hundreds of times before, with “....if Edward comes home”. I took a deep breath and dared to say it at last. “He is coming home, isn’t he?” “Yes, he is.” Edward was asleep in his incubator and not available for cuddles, but we had the biggest hug with each other, standing watching him sleep.

Edward moved into the lofty climes of HDU on 2^nd January 2006 and came home to us on 8^th February, on day 120. We were a proper family at last.

NICU Mantras

I have really started to embrace Twitter, its a great place to interact and meet people you never otherwise would have met. I have met this wonderful mummy via another via this lovely mum and Nicu nurse. I met Jenny whilst she was pregnant with triplets. She threatened preterm labour and managed to hang on until 28 weeks. Her three little babies are currently in NICU (neonatal intensive care unit) and doing very well, however they are subject to the usual NICU issues that all premature babies face, little setbacks, various health problems, and just the slow business of growing and learning lifeskills that full term babies take for granted - you know, life skills - like breathing, maintaining body temperature and the all important feeding.

Yesterday, on Twitter Jenny was feeling a little low, post c-section, babies in NICU, expressing (for three!) takes its toll. She mentioned that her mantra was "tomorrow will be better". It got me thinking, what were my mantras in NICU? What were those little snippets that helped me through those long days?

I am the Mummy - I repeated this over and over. It is very hard to feel like a mummy when your baby is kept in a plastic box, doesn't look like a baby and you are not doing normal mummy things. But you are the mummy, very much the mummy and no one, no matter how qualified, how experienced, can do the job you do. However dedicated the professional, they do not, and will not, love your baby. That's your job.

Now is not forever - It is very hard to keep a sense of perspective, especially when you know that your baby is likely to be in hospital until their due date, and that is 3 months away. I remember my sister blogging at the time "she is learning to be a mother to a baby who lives in a hospital". And feeling desperately sad. But it wasn't forever. And now, its just memory, story. It happened, it was real, it hurt, but its over.

The rule of three - One of the things I really struggled with was information, particularly about things that came down to opinion. Every nurse does things differently. And every nurse thinks her way is either the only way, or at the very least the best way. I was told to throw out bags of milk as I had frozen them after being in the fridge for 24 hours. At the time I didn't know how much he was taking so didn't want to freeze them straight away as fresh is better. One nurse said it was fine, the other said it was dangerous. I accepted the second nurse's opinion as gospel and chucked it. Several others subsequently said it was fine. So I then operated a rule of three, if three people said the same thing, I accepted it as truth.

I know my baby best - Although your baby might be in special care, with things happening you don't understand, you have known your baby since it was conceived, and you can still trust your instincts. If you are concerned, speak out. One of the doctors wanted to do a lumbar puncture on my son, because they believed he had an infection. At this time Joseph was on pretty much the full spectrum of prophylactic antibiotics. I made the doctor tell me what indicators Joseph had of infection, and he told me he was having seizures. Now by that time I was spending up to 7 hours a day with him, so I asked him for dates and times. Some of these "seizures" had happened whilst I was there. I was sure it was constipation. It looked to me, to use the local dialect, that Joseph was "thrutching". During these "seizures" he was awake, he was looking at me, and his tummy was tensing. As it turned out, he was constipated, in the next 48 hours he did several poos, and the "seizures" stopped. No need for the lumbar puncture.

You are not alone - When you are going through special care, you can feel desperately lonely. In our case our unit only had room for one long term NICU patient so no one else was going through what I was. However, I found support from unlikely sources. Cleaners, chaplains, one of the maternity doctors who used to lurk outside the unit for a cuddle and a quick catch up, even fellow bus catchers. I met one lady whose son had been in hospital for six months, and she went nearly every day to see him. We would swap notes, and give encouragement. She was in her 70's and her son was 40 and in long term psychiatric care. But I felt a strong affinity with this mummy, who was having very similar experiences to me, the feeling of social isolation, fear of the future, and disconnection from her son. And having to deal with things she didn't always understand.

Its all character building - Sometimes I wondered why this was happening to me. But then I asked myself "why not me", if it has to happen to somebody let it happen to someone who will roll with the punches, who will learn from it, who will come out the other side with a richer character, and an appreciation of the whole experience.

I would never, ever wish having a premature baby on anyone, its hard, its sad, and what the baby goes through in order to survive and thrive is tough. Most mummies cry when their babies have their injections. When Joseph had his injections, I was completely calm, grateful that was all it was.

However, having a premature baby can be exhilirating, watching them grow and develop, and learn, its amazing. So whilst I would not advise going out of one's way to have a premature baby, use the experience, if it is thrown at you, to grow as a person, and importantly as a mummy.

The Hardest Part

Its cold and snowy here at the moment, last night I cheered myself up by looking at how long it is until our trip to Australia in February. 75 sleeps. I was amazed its that close and was thinking how quickly time will fly. Then, a thought crossed my mind. Joseph was in hospital for 76 long sleeps. How slowly that period of time went for me then.

I am not sure many people realise this, but, in the vast majority of hospitals in the UK, you cannot stay in hospital when your baby is in special care. There are no facilities for parents to stay. There is an anomaly, because in paediatric hospitals and untis parents are encouraged and even expected to reside with their child during their admission.

There are lots of difficult things about having  a premature baby. The fear of the unknown, watching your baby go through unspeakable medical procedures, not being able to hold your baby. But for me, the hardest part was not being with my baby at night, leaving in the evening and going home. It was made more poignant that our car park was also where parents parked who were taking their babies home. Day after day I saw excited parents with bouncy babies taking them in their car seats and going home. It was tough. When I caught the bus I deliberately got off at the main entrance so I could avoid that door during the day, when the vast amount of discharges take place.

I was "fortunate" to be ill enough to stay in hospital for the first 7 nights of Joseph's life. It was lovely to be near to him (albeit a floor away) and I could pad down during the night and see him. The visits at 2 or 3 in the morning were my favourite ones, the doctors would be there, but busy between special care, A & E and the children's ward, so sometimes there were only 2 staff on duty. I was left alone to just stare at my gorgeous little baby.

Once I got home, the wheels fell off. I am not sure how much of this was the medication I was on for high blood pressure, normal post pregnancy hormonal imbalance, and how much was immediate post traumatic reaction, but I lost my grip on reality, particularly at night. I woke up my first night at home asking for a nurse to help me get up so I could see my baby. I routinely got up looking for the elevator so that I could go to the unit.

Later on, one horrible night, I had a nightmare. I can deeply recall it. When Joseph was in hospital, I had a self-imposed Google ban. I thought no good could come out of looking up potential problems, if I didn't understand something I'd ask one of the staff, a doctor, ring my GP or ring Bliss.

But this one night, I had the most vivid dream. One of Joseph's doctors had some MRI scans up on a screen, Joseph had a break in the spine at T3/T4 (thoracic spine, the middle of the back) and it looked like a fluid filled tumour. It would mean Joseph would probably not be able to walk, and it accounted for some of his breathing problems. I stood with the doctor trying to digest what this meant. The doctor left the room, and I woke up.

I had tears all down my face, I was shaking, it felt so real. Then, in my muddled state, I thought, maybe it was real, maybe it had happened during the day and I just couldn't remember. I lay in bed, deeply frightened and confused, and had thoughts spinning around my head. So I rung the ward. Fortunately it was one of the senior midwives, who knew my husband's family well, had had pre eclampsia herself, and was very kind and understanding. She listened to me, reassured me that Joseph was fine, and hadn't had an MRI and there certainly were no issues with his spine.

Very kindly, in the morning, one of the doctors did an examination with me present so that I could see there were no problems. But they thanked me for flagging it up. Apparently this is a problem in some premature babies.

Now how did that dream come about? I hadn't read anything, or researched spinal problems. Why was it so detailed? It still sort of haunts me, how my subconcious works.

Before I fell pregnant I was considering doing a degree in nursing, and I went to a talk at the University of Manchester. The lecturer asked us what the most important day in hospital is, from a patient's point of view. I knew the answer, but sat quietly to see what people said. One person said "every day", another said "the day they get a diagnosis", and another said "the day they have their operation".

No the greatest and most important day in the life of a patient (or in this case the patient's mummy) is the day of discharge, the day they finally go home.

Here is the News

Joseph has a cold. He's been poorly since last Thursday. I still have the "PPP" (premmie parent panic) every time he gets a respiratory infection, even if its just a cold.

I remember when Joseph first came home, I was very nervous, and didn't really know what to expect in our first year. The very kind neonatal outreach sister visited us every couple of days. On one visit she warned me that Joseph would be in and out of hospital all year with respiratory infections, and back on oxygen.

We had one close call at Christmas. On Christmas Day Joseph was dopey and not quite himself, but by Boxing Day was piled in the car to Accident and Emergency at a hospital near my in-laws English home in Great Yarmouth. I was terrified, his breathing was dreadful, he was fighting for each breath, and I was absolutely certain I'd be seeing the New Year in at a hospital far from home. As soon as we arrived our "passport" flashed on the screen and we were seen immediately. Joseph gets priority at our own hospital, and I was suprised to see that this followed us to Great Yarmouth.

A lovely nurse was taking Joseph's particulars and put the sats monitor on his foot, I was watching in earnest as the numbers started going up, I whispered "come on Joseph aim for 95", the nurse kinda looked at me as he said "um, how do you know what I am looking for". I grinned and he said "oh, he was prem, you've done the first part of the degree then!" with a cheeky grin.

As it turned out, it was just a cold, it sounded scary, but Joseph was fine. The doctor who saw us was very confident that Joseph did not require anything other than a Ventolin inhaler as needed, and plenty of cuddles, that I could handle!

And that has been our sole brush with readmissions, no one at our own hospital can quite believe our luck. I think the key is that Joseph was on CPAP for a long long time, longer than most other 27 weekers I know. Shall I explain?

When a premature baby is first born, their lungs are underdeveloped and they usually can't breathe on their own. The first step is mechanical ventilation, they are on a machine that does all the work for them. The next step is CPAP, continuous positive airway pressure. This machine helps by keeping the airway established with air, but the baby has to do some of the work themselves. Cycling CPAP is a term used when the baby is given periods of time off CPAP to get stronger, these times off are important for improving lung strength.

CPAP is also the machine used by people with Obstructive Sleep Apnoea. Joseph was ventilated for only 15 hours, which is somewhat of an achievement given his size as well as gestation.

Joseph took a long time to finally kick the CPAP habit, and it was expected he would be discharged on home oxygen. I hadn't really thought too much about it, I knew lots of premature babies went home on oxygen, and then weaned off at home, I was so keen to get Joseph home where he belonged, I didn't worry too much about it.

I am still cautious about colds, at the first whiff of a cold I pull us out of circulation. Joseph has had about 5 colds since discharge, an ordinary baby gets 12 - 14 a year!

The only really bad thing about this current cold, is that Joseph has decided to share it. Ugh.

A New Story

"How old is he?" I've always struggled with this question. I am not sure how I am meant to answer it. Joseph's birthday is the 8th May, but it should have been the 7th August. 3 months. That's a long time to a 1 and a half year old!

When you have a premature baby there are three ways to refer to their age. When they are little the doctors use "gestational age", and refer to the baby in weeks, from their date of conception. For example, he's 34 weeks now. Later on the term is "actual" so at the moment Joseph's actual age is 18 months.

The final term is "corrected", where the months or weeks of prematurity are taken off. So Joseph is 18 months, but 15 months corrected. Whenever I give someone Joseph's corrected age someone usually rumbles me! Like at baby group! (Its often easier with fellow parents to give Joseph's corrected age). Or the little voice in my head squeaks "liar liar". For what its worth the paediatrician and the outreach worker at special care think I should use his corrected age. My Health Visitor thinks I should use his actual, which causes a lot of confusion and annoyance on my part.

It's a really pertinent question for me, and I wonder if other mums of premature babies, particularly premature older babies feel the same?

I try not to read development books or lists of what an 18 month old should be doing, as it is quite depressing. I looked at one just now for this blog entry, and I it makes it even more pertinent to me that I need to answer this question about age, for myself. The very first thing on the list, that thing that for now eludes my child.... the dreaded W word.

Is able to walk regularly and stop safely, without sitting down quickly

Yeah, well, is not able to walk at all, thanks list. But moving down the list, Joseph does a lot of things on this list, and more. His language skills are very good, his other physical skills are excellent, he can climb on to a chair and sit down like a grown up, he can (if he really really really wants to) use a spoon. He recognises himself in a mirror, so in lots of ways Joseph demonstrates abilities that reflect his actual age. Providing he is sitting down!

Perhaps a good thing, but I haven't found a nice neat 15 month old developmental list. I did find a depressing video, which really highlights why I don't do this. The only similarity with this little boy is the hair its so similar to Joseph's the way it sticks up like he's communicating with the mother ship! However this child is confidentally doing that walking thing!

Which brings me to the point I think that I'm making here, is that even if I do correct the 3 months off his age, its not really helping me, as a 15 month old (well a normal full term one that is) is expected to walk. So its not really going to help with the conversations I find difficult, that is, with acquaintances and mummies at baby group.

I have grown tired of our old story. Its a good one, and its an interesting one in many ways, but to me now, its becoming old, tired, and we need a new story now. The prematurity story is a bit like the dark period of Australian history. Deeply relevant, in lots of ways, and not all bad, it's shaped how Australia is today, but there is a new story that is emerging and growing over time.

And that's what we need, a new story that tells of Joseph how he is right now. That supports him, and celebrates him, that concentrates on all that he is, and all that he does and does not make excuses or gives reasons.

And I need increased confidence to tell that story as it is now, not as it was.

Death Stare

Yesterday Joseph and I went on a one bus, one tram, two train adventure into Liverpool. It was a fantastic day, busy and tiring. We met up with some good friends, and had sandwiches, chocolate brownies and blueberries.

Unfortunately public transport + toddler does not always work as well as I would like. On the way to Liverpool on train 1 Joseph melted down. He just cried and screamed and threw things. What can you do? I held him, talked to him, sung to him, and he continued to go mental.

Most people smiled in solidarity, a couple of people even spoke a few encouraging words.

But one old lady glared at me. She walked right to me and glared at me, staring at my awful, screaming child. It brought to mind that heartwrenching scene in Mash where Hawkeye, going mad after too long in the wilds of Korea, witnessing the horror of war, is on a bus and a baby is screaming, which he thinks is a chicken squawking, and the baby is smothered by its mother, in order to make the noise stop.

What did this woman want me to do? And if she had a secret to stop the barrage of noise, why didn't she share it? I think the fact I was calm and not shouting at him made her worse. She shoved past us and went and stood at the door of the train, willing it to go faster and pull into the station so she could make her escape. Once she was gone, Joseph shut his eyes, and went to sleep. For the last 3 minutes of the journey.

It wouldn't have been so bad, but on the way back, the exact same thing happened, although it was worse, in a way, as we hit peak hour. I was sat in the cold hallway in the bike rack with the pram, and Joseph in the mei tai. He happily ate blueberries for about 20 minutes, and then it started, the screaming and crying. There were a couple with a young baby (asleep in its enormous pram, giving me even less room in the bike rack), they were doing a dodgy deal on two mobile phones attempting to buy an illegal pit bull type dog (amazing what people will talk about on the seemingly anonymous public transport system) and were, in between heated quick calls, giving me death stares.

In the end, Joseph put his head on my shoulder, still screaming, and I got out the only weapon left in my virtual aresenal. Yep, the song. The when all else fails song. Which I sang. Over and over again. And eventually, he gave in, and fell asleep. For a blissful hour!

So I do apologise, should you have been travelling on the Liverpool - Nottingham 16.50 service last night, should your ear drums have been assailed not only by my screaming child, but my rather dreadful singing voice. Sorry.

Notes

I have no doubt that patient notes have been the subject of many lectures, studies, and projects within hospitals individualy and the NHS as a whole. How to make them accessible and readable. I can only comment on my own experience.

When I was discharged, I was given my notes to take home, for the community midwife to use, until she discharged me, at which time they would go back to the hospital to be archived. I could not believe the size and volume of my notes, well over 100 A4 pages, from the day of my admission until the day of discharge. The handwriting was at times terrible. They were not in order. Oftentimes notes would say "written two days late as busy on shift". What use is that for the next person, especially when dealing with a complex patient situation?

I found my hospital admission, once Joseph was delivered, to be an incredibly difficult time. I felt that there was no communication between the ante natal ward, and special care. I felt my care was disjointed and problematic. I felt that if people had just read my notes, that life would have been so much easier, for them and for me. But who has time to read through loads and loads of handwritten notes, looking for the pertinent points. And what if the notes just aren't updated? Or inaccurate?

On the Tuesday, day 5 of Joseph's life, I had a really tough day. He was crticially ill, I had post natal blues, his teddy bear got stolen from my room, I was a complete mess. My husband's beloved football team were playing that night, a very important game, and I had said he was to go and watch it at the pub, but that was the day I needed him the most. I rang in tears and he came straight down before the game. The nurses and midwives gathered, to discuss what best to do. It was decided I needed a psychiatric evaluation. I didn't care, I just wanted someone to just take all this away, and make me normal. And give me back my pregnancy, or at least give me my baby.

I had my evening meal and went to special care, and spent time with my poorly baby, just sitting there, staring at him. From the chest up he looked fine, peaceful, cast your eyes downward, and he looked a mess, his tummy distended, the skin around his belly button turning black, he looked sick. And I was scared. My husband came in at once jubilant and despondent. His team had won, signalling Burnley's rise into the Premiership, but as he entered the room he could see his baby was sick, and his wife as a mess.

We went and had a cofee together at the beautiful cafe coffee machine outside special care and the delivery suite. We held hands. I cried a lot. At 10pm he kissed me good night and I took the long walk back to my room (my husband wasn't allowed in my room after 8pm at night who knows what we might have got up to!)

As I got back one of the kind, younger midwives came up to me and said "your having your psychiatric evaluation later, it will probably be around midnight, what would help until then?". I looked at her with huge puppy dog eyes and said simply "a bath". Well the ward mobilised, a nice big bath was run, the best towels obtained, and a nurse gently helped me in. I lay there patting my belly, and said goodbye to my pregnancy, and just howled a bit more. I really wished at that point I could just disappear down the plug hole.

I managed to get out, dried and dressed, and went back to my room. At midnight, sure enough, the knock came and a doctor came and spoke to me. She asked me all sort of questions, which I answered honestly but shortly. I just needed to get some sleep. She then said "right the problem is your methyldopa (for high blood pressure)" what we need to do is take you off that and put you on Labetelol, and you will start feeling better". My blood pressure started to rise, my face filled with anger.

"You haven't read my notes" (which was to become my catchphrase). She looked startled. "I have a history of reactive depression, methyldopa is contraindicated for depression, its true, but why wasn't I put on Labetelol?", she glanced at my notes, looked at me, and said "I'm sorry, I don't know." I felt relieved and annoyed, relieved she hadn't tried to wriggle out of it but annoyed that I seemed to be the only one who had a grips of my medical history. "I am a severe asthmatic, myself and Dr P the consultant felt that the risk of depression was better than my asthma being out of control, and Labetalol is contraindicated for asthmatics".

The doctor put down her folder, put her arm on my shoulder, and apologised. "You are in a time of great stress, you are very intelligent, you know what is going on, and you need us to be part of the solution, at the moment I feel I am part of the problem, and you need a good nights sleep."She left, I cried some more and I finally drifted off to sleep.