Home and Dry? Part 2

A couple of days later came the experience I had been dreading.  Samuel was very slow with one of his feeds.  I tried not to worry too much but he didn't cry for his next feed and was very sleepy - too sleepy to take his milk.  We called the hospital and a neonatal nurse came out to see us.  She weighed Sam and we discovered that he had lost a bit of weight.  She explained that he might be wearing himself out at feeding times by taking too much overloading his stomach and then not having the energy, or stomach space for his next feed.  She suggested that we draw his feeds out to 4 hourly rather than demand feeding him.  She said not to feed him any less than 4 hourly as he was so tiny and we ran the risk of exhausting him and overloading his stomach.  A couple of days passed and his feeding hadn't really improved.  He was screaming and struggling to go the full 4 hours but if we tried to respond to his cries and feed him before hand he would take a tiny amount before falling asleep from exhaustion.  He then wouldn't make it anywhere near his next feed.  He was nearly falling asleep from a combination of exhaustion and frustration.  A very well meaning person told us the newborn babies always have difficulty feeding. I can remember, all too clearly, the frustration I felt; Sam wasn't a normal newborn baby.  He fell under the category of 'very low birth weight', health professionals were concerned about his weight gain and he wasn't feeding properly.  I was still keeping the charts we had been shown to keep in SCBU, showing exactly how much milk he was taking at exactly what time.  I knew I was becoming obsessive but something told me that if I didn't keep the charts, if I didn't monitor his feeds, he would fail to thrive.

A couple of days later the midwife came out again.  If she thought I was tired and emotional before, I dread to think what she must have made of me this time!  We discussed Sam's feeding and sleeping patterns and he was weighed again.  The midwife still wasn't happy with his weight gain and he was prescribed a very high calorie formula and we were given a load of premature teats that would hopefully make feeding a bit less of an effort for him.  We were warned that if his feeding and weight gain didn't improve we would be looking at him going back on the naso-gastric feeding tube.  Everything felt like such an effort.  Although his feeding didn't improve dramatically, the high calorie milk made a huge difference and he gained 1/2 lb in the space of a week.  I can remember the relief - and pride - that I felt.

Sam had been home for two weeks when I braved the world of parent and toddler groups.  I had been going stir crazy at home and, due to Sam's prematurity, I hadn't been able to do any antenatal classes and as a result had only met one other person who was pregnant at the same time as me.  I decided that the children's centres were probably a good place to start for meeting people.  One of the first groups that I went along to was a children's centre 'Baby Club' where mums had the opportunity to sit around, chat, offload to each other and drink coffee until it came out of our ears! As I wasn't breast feeding, the caffeine seemed like a very good idea.  The first time I went along I could see that the room was very clearly split into different groups of mums who all seemed to know each other.  Sam's size, for once, did me a huge favour and became a hot topic of conversation drawing me into chatting with one of the groups. They all seemed lovely and had babies the same age as Sam.  I found out that these ladies had met through NCT classes that they had done together before their babies were born.  One of the ladies, Mary, looked vaguely familiar although I couldn't place her.  As we continued to talk, mainly about our babies, Mary asked when Sam's birth date was, and on which ward I was in hospital.  I explained that, although I had been on the c-section ward, Sam was in special care.  Straight away, she exclaimed that she had been in the bed opposite me before her c-section and had watched me trying to assemble a breast pump!  I couldn't believe that she had remembered me and was even more shocked to find out that she had been thinking of me since seeing me in such a state that day!  We exchanged numbers and another of the ladies in the group, Karen, took my email address telling me that she was going to invite the NCT groups round for lunch one day and would love for me to come too.  And so my group of 'mummy friends' was made.  I went home and couldn't stop telling John about the other mums I had met and how I had even been invited for lunch!  Finally it seemed like things were becoming more 'normal'.  Over the next months and years these friends became some of my closest friends and I am so grateful for getting to know them.  I don't know how I'd have survived the aftermath of Emilie's death without their support.

Home and Dry? Part 1

The intended day for bringing Samuel home arrived and we made our way into hospital as normal.  I was desperately scared of being let down again so we left the car seat and his coat in the car so that, were we not able to bring him home that day, we wouldn't have to walk out of the hospital with an empty car seat.  I was fed up of going home empty handed, but the thought of actually taking away an empty car seat was a different matter altogether.  I needn't have worried though as he was weighed and discharged within an hour.  We were given meds and syringes for him to have on a daily basis and our checklist was checked before we were able to put his coat on and put him into the car seat.  At 3lb 15oz we realised that he was too small to sit comfortably in the car seat so a nurse showed us how to pad out the seat with nappies to ensure that his head was raised up and supported to reduce the risk of asphyxiation.  We then said goodbye to the special care staff and were chaperoned to the car park by a nurse.  We strapped him into the car and realised that, for the first time in five weeks, we were solely responsible for our baby.

The return home with Samuel was very surreal.  We went from being under constant supervision, measuring and recording every little bit of milk, recording the contents of every nappy change and having an apnea mattress for Sam in hospital to being told that we needed to treat him as a 'normal' baby.  Inspite of this, we were also told that if he missed a single feed we needed to call the hospital so we were on edge.

At the time, we lived in typical terraced house with central heating but no double glazing and very questionably sealed sash windows and it was the middle of February.  We put Sam into his Moses basket and rolled up blankets, in the way we had been shown, to make 'boundaries' so that he didn't feel as swamped as he would without them.  We then placed him, feet to foot, in the Moses basket and tucked blankets around him.  It was freezing cold outside and our house was cold and drafty and I was torn between worrying about Sam conserving vital calories and keeping warm and dying from cot death as a result of over heating.  I don't think I slept at all the first night he was home.  The following day the midwife came out to see him and check me over.  She was happy with Samuel and seemed happy with me but I remember her writing 'tired and emotional' on my notes.  I wondered what else she had expected!  

As I imagine there are with any baby, there were a lot of worries around bringing Samuel home, which were amplified by his size and weakness.  He was 5 weeks old and I didn't feel that it was right for us to stay in the house as you might with a newborn and wanted to get out and about.  In getting out and about I then became terrified of the germs that he might encounter and actually remember considering keeping the rain cover over his pram so that he would be protected from germs.  We tried to keep up as normal as an existence as possible but Sam's tiny size drew a lot of attention and we would be constantly stopped by well meaning people who commented on how tiny he was.  I hated people that we didn't know coming to look at him.  I didn't know what ailments they might have and what germs they could be passing on to my precious son.  I started to become withdrawn.  When you have spent the first 5 weeks of your son's life in a blur of antibacterial hand gel, plastic aprons and sterile environments it is very hard to adjust to real life.

Life in SCBU: Part 2

Once milk had been expressed it would labelled with the baby's name, nursery number, date and time.  It could then be stored in the fridge or freezer until it was taken out by whoever was preparing the naso gastric tube feed at that time.  Sam was still being weighed daily and his weight wasn't increasing as much as the medics had hoped that it would.  I arrived one morning to prepare his feed for his tube and was handed a powdered sachet and told that it needed to be added to his feed.  It was a high calorie fortifier and needed to be added to boost the calorie content of my breast milk.  I put the feed down his tube and then went into the expressing room and cried.  It seemed, at the time to me, so unfair that not only was my body unable to sustain him in pregnancy but my milk, that should sustain him, was too low calorie to do so.  I began to feel more and more redundant.  This was nothing like I had imagined having a baby would be like.  I had had dreams of bringing home my fluffy little bundle who would, of course, sleep through the night straight away and be a joy to everyone around him.  Instead, my friends hadn't even met him.  I hadn't held him for more than a couple of minutes at a time, I couldn't choose new and exciting clothes for him to wear and I couldn't take him out to cafes to while away the morning with a book as I had imagined.  And now, the milk that I was so proud of producing wasn't enough to sustain him.  I spoke with the breast feeding coordinator who explained to me that what was happening was very common.  She told me how well I was doing to express any milk at all and how this would really help his immune system.  She also explained that having a premature baby triggers a grieving process.  Grieving for the experience you had hoped for, and should have had.  I was so pleased that she was normalising what I was feeling and tried hard to cling to her words.  

The following day I was able to put Sam's milk into a bottle for him to have instead of down his feeding tube!  As far as I was concerned this was the biggest step yet!  I actually felt like I was doing something that a normal mother would do with a normal baby.  He took 10ml from the bottle which was a huge amount!  The rest of his feeds that day were put down his tube to avoid tiring him out too much and expending too many calories.  I didn't care how many feeds he had from a bottle that day; he had taken milk from a bottle which meant he was one step further to having the tube removed and coming home.  I couldn't have been happier and spent the rest of the day looking at the photograph that had been taken of him having his bottle!

A couple of days later Sam was weighed but his weight gain was a lot less that they had wanted it to be.  It was explained to us that until he gained more weight he wouldn't be able to maintain his body temperature and as a result wouldn't be able to come out of his incubator.  Calories were being burnt through bottle feeding and it was decided that the majority of his feeds would be given to him down his naso gastric tube until his weight gain had improved.  Although I was still able to give him a couple of bottles a day I felt like this was a huge kick and a big step in the wrong direction.  I desperately wanted to see Sam come out of his incubator and into a heated cot but it seemed impossible.  Even though I was aware that there were far sicker babies than Sam in the nursery, all I could focus on was what was wrong with Sam.  I hated having to look a him through his incubator and hated having to rely on his tube to feed him.  I hated how weak he was and that there was always someone there to tell me that he needed to go back in his incubator to rest when all I wanted to do was cuddle him.  I hated that I still hadn't heard him cry and that he very rarely opened his eyes.  He was still so tiny and so weak and I knew that this is not what having a baby should be like.

Finally, Sam had gained enough weight to be transferred from his incubator to a 'hot cot' which is a heated cot that helps babies to maintain their own body temperatures.  He was also taken off the heart and breathing monitors.  Although we knew that it was a step in the right direction this was incredibly scary for both of us.  I kept worrying that he would stop breathing or that his heart rate would dip and no one would notice.  I couldn't stop thinking about it.  As I sat next to his cot I would place my hand gently on his chest to check that he was breathing and would even find myself holding his wrist to feel his pulse.  The thought of his heart or breathing stopping were with my the whole time.  It was explained to us that, although such thoughts were normal, Sam wouldn't be able to come home with the monitors so we needed to get used to not having them.  We were also told that he would be transferred to 'the nursery' which was to be the last step before home.  In the nursery the nurses would work on getting Sam to take all his feeds from a bottle, so that the tube could be removed, and maintaining a consistent body temperature and weight gain so that he could come home.  I took this as encouraging news and knew that we had to work hard, with the nurses, to reach these goals.  However, a couple of days later things took a turn for the worse.  Sam had been really hungry and had been feeding from his bottle very well and even waking up to demand more feeds!  Because of his tiny size, and therefore the tiny size of his stomach, although he was still hungry we could not give him extra feeds as we would risk overloading his stomach.  As a compromise it was decided that his feeds would be stretched from three to four hourly so that he could take larger amounts.  This initially seemed to work but over the course of the next couple of days he began to get very tired and by the Friday afternoon he was exhausted and largely unresponsive.  It was decided that he would be put back on three hourly feeds and would also be put bacon the nasogastric tube.  I remember being absolutely devastated.  It felt like such a blow.  I found the tube so invasive and clinical and felt redundant when it came to feeding my baby. It felt, to me at the time, that we were back to square one and I began to have somewhat irrational thoughts of having to bring him home on a feeding tube!

We reintroduced his bottle feeds gradually over the next couple of days and watched his weight increase.  He even began demand feeding!  Discharge meetings came and went and after each meeting I expected to get the news that we could take Sam home.  The news didn't come and I began to feel the weight of having a baby in special care. I can't remember any of life outside special care during those weeks and had somewhat begun to feel comfortable there.  Our daily routine for weeks revolved around chatting to nurses and building relationships with other special care parents.  When John went back to work I began to spend my whole days in special care as I still couldn't drive, due to the C-Section, and I began to look forward to seeing the friends I had made there more and more.  Even though I was desperate for Sam to be discharged, and it was all I could think of, I was apprehensive about leaving special care, and the relationships we had made, there behind.

Eventually, as Sam became stronger and the transition home looked more imminent we were able to spend two days and two nights in the family room with Sam to prepare us for going home. The family room was a small 'hotel like' room with a bed, a cot, a TV, a breast pump and tea and coffee making facilities.  I was more excited about the 'on tap' tea and coffee than I was about the ensuite! Two days and two nights without nurses milling around us constantly and two days and two nights with coffee making facilities in the same room as Sam.  I, for the first time, was introduced to daytime TV and was able to watch it whilst I held Sam and fed him. Simple things, but such a novelty.  Although we were kept awake by every little grunt and groan he made and every breath he took, we loved finally spending the night with him - and playing at being a real family.  Although I had thoroughly looked forward to this it was a tiring two days.  Sam still needed the fortifier in his milk so I was unable to breast feed him.  I sat and made notes and draft schedules in my journal to work out how best to juggle expressing, bottle feeding him expressed milk and continue 'normal' things like cooking and cleaning once we returned home.  As John was at work it was generally just me and Sam in the family room with no one to curb my obsessive nature and I ended up with pages of drafted routines and schedules, none of which seemed to work.  Once John returned to the family room from work on the following evening I went to share my concerns with one of the nurses.  I couldn't understand how I could possibly spend half an hour expressing and half an hour bottle feeding every 3 hours.  It had even exhausted me in the family room without having anything else to do.  I then realised that the fortifier wasn't approved for community use and Sam would need to be supplemented with formula anyway to help him gain weight.  It all seemed completely overwhelming and, with the support of the nurse, I made what I believe was the most sensible decision of our time in special care and decided to wean Sam off breast milk and on to formula.  There are still times when I look back and wonder if I gave up too early but I know that I spent over 4 weeks of my life painfully expressing milk every couple of hours to put down Sam's feeding tube and there was no way that I could realistically do this all day and all night at home, plus bottle feed him and supplement his feeds with formula.  I have spoken to other friends who have had premature babies who feel the same.  Once I made this decision and began to increase his formula feeds and decrease his expressed milk feeds it was as if a weight had been lifted off my shoulders!

Life in SCBU: Part 1

Shortly after, I was moved to another ward for women with babies in SCBU.  I found this much easier but still struggled with seeing women coming to and from delivery with their new babies - seemingly not a care in the world - whilst I sat feeling rather sorry for myself.  That day I wrote this in my journal: 'today has been a really hard day.  I think the tiredness and hormones are setting in.  I'm finding it really hard leaving Sam in SCBU and desperately want to be with him all the time.  I am so jealous of the mothers who give birth to their babies and no one takes them away from them.  I find it so unfair that I can't touch him and hold him as much as I want to.  The next few weeks seem endless in front of me and I just want him at home with me so much.   I don't think it helps being in hospital myself.  I saw some twins today, same gestation as Sam but both significantly bigger.  What went so wrong?'.  I continued to struggle with being in hospital and asked to go home as soon as possible.  I was discharged after the obligatory 72 hours!

Leaving Samuel at the hospital was the hardest thing I had ever had to do.  I was desperate to go home; to be in my own house and in my own bed.  Our plan was to rest at home as much as possible whilst still travelling the 10 minutes to the hospital to spend as much of the day with Sam as possible - and for me to be able to use the top of the range breast pumps in SCBU rather than my manual one at home!  As we left the hospital I still couldn't walk properly due to the c-section and had to be helped by John.  We walked out of the main entrance and in to the car park and I was suddenly hit by the enormity of what we were doing.  We shouldn't be leaving our baby in the hospital - we should be bringing him home with balloons, cards, smiles and new outfits like the other parents we saw.  I broke down in the middle of the car park with exhausted sobs and cried all the way home.  I struggled to remind myself that Sam was ok.  We called the hospital as soon as we'd arrived home to check how Sam was and then went back in that evening to see him again.

The next few days things seemed to get a bit easier.  Sam had a brain scan at a few days old which confirmed that his brain was clear of any bleeds. This was amazing news and something a lot of people had been praying about.  He was able to tolerate tiny amounts of milk and had even done a small poo.  This is a very exciting thing with a special care baby - it meant his digestive system had started to work!  He was placed on a 'cautious feeding' regime where he was given tiny amounts of milk every couple of hours.  The idea is that the amount of milk, and the gap between feeds, would be very gradually increased as Sam was able to tolerate more milk.  He was being fed through a naso gastric tube and the nurses showed us how to put his milk down this.  By day 5 he was able to tolerate 2ml milk every 2 hours!  This sounds like a tiny amount but it was very exciting at the time. We were also able to do his 'cares' ourselves which involved gently cleaning him with cotton wool and sterile water and changing his nappies, both through the windows in his incubator.  This juggling act took some getting used to but made us feel more like his parents than people who observed him through a box.  We decided that we would try to be at hospital for his cares whenever we could.  

Throughout his stay in special care, Sam miraculously managed to stay infection and jaundice free but had a lot of ongoing problems with his feeding.  When he was 8 days old we were told that, as he was getting towards full feeds, the next step would be to take him off his drip and remove his long line so that he would get all the nutrition he needed from milk.  However, that day when we went in to visit him and he seemed quite distressed. He still didn't cry as such at that stage but he looked uncomfortable and his heart rate kept dipping which I found very upsetting.  Just before we left for the night he was sick.  I remember getting really upset about what had happened and didn't want to go home,worrying that he would be sick again and choke during the night. A nurse explained to me that he possibly had a bit of reflux which was normal, especially in premature babies.  I couldn't stop thinking about it and didn't sleep that night.  When we arrived the following morning everyone was happy with him.  He hadn't been sick again but they had kept his drip and long line in until the following day, just incase.

The days in special care are very long and monotonous.  Most of the time is spent either staring through the incubator or expressing milk.  Breast feeding was something that wasn't an option for Sam as he was so small and weak and his sucking reflex was very underdeveloped but I carried on expressing as I knew how important breast milk was for him.  The expressing room in special care is a surreal place!  It is a small room split in to two with a fridge, freezer and sink in one half and a number of chairs and breast pumps in the other half.  These breast pumps bear no resemblance to the small, portable pumps that people buy when they have a baby.  They are huge, hospital grade pumps that plug into the mains electricity and work a lot harder than the manual pumps people own.  They can even pump milk from both breasts at the same time which was a source of many jokes at the time.  Strangely enough, the expressing room became somewhere that I looked forward to going.  There were always people in there to chat to and as everyone was in the same position it became a huge comfort to exchange stories, anxieties and experiences with people who had endured the same things as I had.  It was there that I met one of my closet friends, Siobhan.  We hit it off straight away and went through the stresses of special care together.  Sam and her little girl have been close since and there is a level of understanding and empathy that I don't feel is possible unless you have experienced special care.  The staff in the unit that we were in are amazing.  They are both highly skilled and friendly and I feel that it is the friendliness and warmth that they show both babies and parents that makes the unit a safe place for parents to develop and build friendships with each other.  I can't imagine how anyone could be in special care for any length of time without support from other parents.

Size Matters: Part 2

The next 7 hours went by in a blur of tears, sickness and pain.  There was another newborn baby on the ward but he was full term and not poorly.  No one had taken him away from his mum and visitors came and went and cooed over him whilst I sat and mourned for the normal experience I so desperately wanted.  I haven't ever been able to put into words the feeling of having your baby taken away from you.  All of a sudden your body is awash with hormones that are telling you to do everything you can to protect this tiny being yet you become obsolete as the staff in special care take over.  Eventually a midwife brought me a photograph that the neonatal nurses had taken of him.  He looked tiny, wrinkled and exhausted and I asked John to go back to special care and take a better photograph of him - which he did!

Seven hours after Samuel was born I started to regain feeling in my legs and was allowed to go down to special care to see him.  John had to wheel me in a wheelchair that would only move backwards and that, combined with the morphine and anesthetic effects, caused me to be violently sick.  I was told that I wouldn't be able to see Samuel until I was a bit stronger so I stood my ground, held my breath and defiantly kept my head down and eyes focused forwards, whilst forcing John to push the impossible wheelchair FORWARDS until we made it to special care without any more vomiting!

My first memory of seeing Samuel is very hazy.  He was tiny and there were wires coming out of him everywhere.  He wasn't ventilated though and didn't need oxygen which was amazing and was one of the first miracles we saw after his birth.  He wore a nappy that as good as covered his whole torso and he looked tired and fed up.  I remember his half hearted effort to open one eye and squint at us when he heard our voices but there was no crying, no grappling for a feed and no attempts to focus on objects as normal newborn babies do; he simply lay, in silence, every breath and tiny movement he made using up precious calories that he needed to preserve to grow. To live.  

The nurse came over and asked if I'd like a cuddle.  I hadn't prepared myself for that at all - I was certain we wouldn't be able to hold him for a while.  She took him out of his incubator very gently and wrapped him in a blanket explaining to us the importance of keeping him warm to conserve calories.  Everything came down to calories.  Even the way in which his nappy was changed; as quickly as possible through the windows in his incubator without taking him out or moving him unnecessarily.  It was all so clinical.  I hated, and still hate, the incubator.  A clear box that put up a boundary between my baby and I.  The monitors around it that were connected to Sam by various wires beeped, as it seemed, every couple of minutes and a drip machine at the side of his incubator contained various liquids which sustained his life.  Milk wasn't an option.

The nurse handed the blanket wrapped bundle to me to hold and explained that it would only be for a couple of minutes.  He felt tiny. Even through the blanket.  His skin was paper thin and his limbs felt like tiny little twigs.  His ribs were visible through his chest and his tiny finger and toe nails felt like claws.  But I loved him.  I sat and cried, uncontrollably, as he lay in my arms.  My beautiful little boy.  Already I couldn't imagine life without him.  My 'couple of minutes' went far too fast and before I knew it he was back in the incubator and I was being wheeled back to the ward.

My sleep that night was fitful and uncomfortable.  I still hadn't been allowed anything to eat or drink due to the fact that I was still vomiting a lot and was still on a drip feeling very weak.  I woke up feeling sick and hungry and asked for a bowl of cereal but when I was checked over by the midwife she said that I had no bowel sounds and would not be able to eat for a while.  Wondering what to do instead, I decided to get dressed as best as I could, make myself as presentable as possible - I even put on make up although goodness only knows who for - and hobbled down to special care to see Samuel.  

Whilst my lack of bowel sounds was a cause of annoyance, Sam's lack of bowel sounds was cause for concern.  They would want to be giving him tiny amounts of milk soon but his digestive system didn't seem to be working.  They decided to wait another 24 hours and see what happened.  Although he couldn't have any milk, one of the special care nurses explained to me the importance of expressing colostrum (first milk) to refrigerate for him to have when he was ready.  She supplied me with an expressing kit and showed me how to use it very quickly before I hobbled back to the ward.  The midwives felt differently about expressing and advised me to try by hand at first, rather than using a machine.  I couldn't get any milk and I certainly didn't want any help from a midwife to try.  All I could think about was Sam and his unresponsive digestive system, the fact that he was severely under weight and needed all the calories he could get.  Back to those calories again.  I asked John to bring in my manual breast pump from home and, when he arrived, sat in bed, cross legged, wondering - no, obsessing, about how to use it.  I was tired, emotional, sore and hormonal and in my (somewhat irrational) mind, if I couldn't get the pump to work, I wouldn't be able to express milk and my baby wouldn't get any of the nutrients he needed.  Of course, I now know that there is a milk bank available for premature babies and if all else failed, formula would be an option.  But at that moment in time there were no other options.  I sat on the bed and sobbed.  I was crying for the fact that I didn't know how to use the pump; I was crying for the exhaustion and pain; I was crying for the culmination of all of the worry of the previous month; and I was grieving for that 'normal' experience that other women on the ward were getting.  

I remember seeing a lady on the bed opposite me getting prepped for her c-section.  I remember taking in her appearance and that of her husband.  She had red hair and they both wore glasses.  They both seemed so nervous.  I could tell, from their conversation, that they were waiting to go down for her to have a c-section.  Feeling a stab of pain at the thought of how different her experience would be to mine, I returned to my instructions trying to make head or tale of them. I remember the way the red haired lady looked at me as I frantically tried to decipher the instructions of the breast pump.  I wondered what she must think.  What I must have looked like? - a frantic, obsessive woman with no baby in sight.  I longed to tell her that I did have a baby - that he did exist.  But she was whisked away to theatre for her c-section.  Little did I know at that moment that over the next few months she would become one of my closest friends and someone who helped me through the following 4 years.

Size Matters: Part 1

Size Matters: Part 1

December 2008

I was well into my second trimester and the morning sickness hadn't stopped. I was feeling exhausted.  I was struggling to eat properly and hadn't gained any weight in the way that you're meant to when you are pregnant.  I envied women who bloomed in pregnancy but every time I looked at the scan photograph I knew that every bit of tiredness and sickness would be worth it.  Work was incredibly busy and I put my exhaustion down to this.  I tried to rest as much as I could outside of work but the feeling of illness and exhaustion didn't go away.  

At 28 weeks I had a routine midwife appointment.  My blood pressure was checked and my urine was checked for protein.  Both were fine.   The midwife located a heart beat quickly and I lay and listened to the sound.  I was certain, at the time, that it was the most beautiful sound I'd ever heard - the sound of my baby's life. When the midwife measured my bump, however, she was concerned about the size.  She made a note of it and reassured me saying that as I am slight she wouldn't expect me to have a huge bump and that every woman and baby grows at a different rate.  Just to be on the safe side she wanted to see me again the following week.  I wasn't especially worried.  It played on my mind but not enough to cause concern.  I went back to work, had a quick chat with a colleague to try and dampen my worry, and tried to put it out of my mind.  

The following week my bump was measured again and growth had been a lot less than they would have expected.  It was a couple of days before Christmas and the midwife advised me to rest and to come back a few days later - my blood pressure and protein levels were still fine.  We went home and enjoyed Christmas as much as we could.  My sister in law was also pregnant with her second baby - not much further on than me - and for the first time I could see that there was a big difference, not only between the size of our bumps but also in the way she felt.  She was blooming and I was exhausted, run down and frail.  We didn't tell our families about the growth issues.  We didn't want to worry them but it was having a definite strain on us.  On 29th December we returned to the midwife and heard the heart beat again.  I had tried so hard to rest over Christmas and was feeling positive - especially since my whole family had suffered an outbreak of gastric flu yet i had remained unaffected and had been able to eat normally.  I was certain I was getting stronger and even went alone to see the midwife.

I lay on the bed while the midwife took out her tape measure to measure my bump.  She measured once, readjusted the tape measure and measured again for certainty.  She explained that there had still been no growth. "I don't want you to worry", she began to say, "but I'd like to refer you to the women's for a growth scan as you seem a lot smaller than you should be for this gestation".  She reassured me as best as she could but there and then called the hospital to make an appointment for a growth scan for me the following morning.  As I was leaving she said, almost as an afterthought, "try not to worry too much.  They'll probably just want to monitor you - they won't just whip in and deliver at this gestation".  I drove home in a daze - the thought of premature delivery hadn't even entered my mind.

The next month is a bit of a blur of appointments and monitoring.  My growth scan revealed that our baby hadn't grown as much as he should have done.  It also confirmed that there was resistance in the blood flow through the placenta meaning that the baby wasn't getting the sustenance he needed.  An appointment was made for me to come back a couple of days later.  

At the second growth scan things still weren't looking great and we were asked to wait to see a consultant.  No appointment had been made for us, instead we were asked to hang around and wait until the consultant was free to see us.  I felt awful.  Something was wrong with my baby and it was serious enough for us to be slotted in to the schedule of a busy consultant.  The scan that the consultant did confirmed what the sonographers and midwives had found.  There was resistance of blood flow through to the placenta and 'absent end diastolic flow' through the umbilical artery.  My baby wasn't getting enough blood and would be delivered early at a time that was considered safe - at a time when his internal organs had had as much time to develop as possible, but before the restricted blood flow became critical.  I was given steroids to boost his lung development and my notes now read 'IUGR', intrauterine growth restriction, a term that I would become very familiar with over the coming years, as I would with the consultant. The plan was to deliver by 34 weeks.

Over the next couple of weeks I went into the hospital for daily monitoring and CTGs.  By now I was on bed rest at home as much as possible and felt awful.  The baby's movements had slowed down significantly which, I learnt, is a way that babies conserve energy in utero.  I had to keep a kick diary to monitor his movements.  It was very unnerving and I even considered the possibility of the baby not surviving and ran through different scenarios in my mind wondering how I might cope if the worst happened.  At 33 weeks his movements had slowed so much and his heart rate was not what they wanted it to be.  The medics hadn't been happy with the CTG readings for a couple of days.  Once again I saw our consultant.  She ran another growth scan which confirmed that the baby was showing signs of 'brain sparing' - where oxyganated blood is sent to the brain at the expense of the other organs in order to protect it.  My initial worry was the fear of my baby having cerebral palsy - something that they couldn't deny could being a possibility.  An appointment was made for me to have a Caesarean section the following morning.  We were advised to go home and have a nice meal before I had to come back to the hospital that night for admission.  That night we settled on the name Samuel meaning 'God has listened' and 'asked of God'.

Once I was admitted to hospital I had a series of CTGs through the night and didn't sleep at all.  I was excited at the prospect of meeting my little boy but was terrified at the thought of what could potentially go wrong the following morning and in the coming weeks.  I tried to keep myself occupied by reading books and listening to music through the night but my mind was in overdrive.  The following morning I got up early and had a shower, trying to bring some sense of normality to the day.  The morning seemed to go on for ever.  We found out that, at that present time, there wasn't a bed available in special care and the neonatoligists were having a meeting to decide what to do for the best.  I was terrified at the prospect of having to be transferred to another hospital not as close to home where I was feeling isolated.  Eventually, another CTG showed that Samuel was tachycardic and it wasn't safe to leave him any longer.  I was very quickly prepped for theatre and sent down to have my c-section.

A canula was placed in my hand and I was give a spinal.  Everything seemed to happen so quickly.  John was brought into theatre to sit with me and the operation began.  Within minutes Samuel was born.  We waited for the cry but there was deafening silence.  There was a screen up that obstructed our view but we knew that the neonatoligists were working on him.  The silence went on for many minutes and in that time the technician kept popping to see what was happening.  We asked him what was going on but he couldn't tell us anything.  There was only one thing that we wanted to know - was our baby alive.  It became clear quickly that he was just filling time in going backwards and forwards while he checked on the progress being made. The thought of losing Samuel crossed my mind again and I began to panic.  John's body language and expression mirrored mine as we both began to fill up. Finally we heard a tiny, mouselike squeak.  It wasn't the gasping for air cry that new born babies normally make but it was a sign of life none the less.  He was brought round to the side of the operating table for us to see him for a couple of seconds before he was whisked away to special care.  I remember the shock I felt when seeing how tiny and delicate he was.  I was overwhelmed by how beautiful I thought he was but I can barely look back at photographs of him now due to his fragility.  We weren't able to touch or hold him as he was taken away so quickly.  I longed to be able to hold him.  I was taken into recovery where I had to wait for a while as my temperature had dropped quite significantly.  Once Samuel was stable, John was able to go and see him but I had to go back to the ward until I was stable too.  It was confirmed that he weighed in at a tiny 2lb 13oz - very small for his 33 weeks gestation.

A New Focus

So....I have 2 amazing writer friends. You can read all about them here  http://mywordpie.com/while-im-away and here http://campbellfiona.wordpress.com/bakes/

Over the past 18 months or so they have been supporting me (not a writer!) with getting my story down on paper to share.  The original idea was to self publish to raise funds for research into the causes of stillbirth. I wrote 30,000 words which, for me, was a huge amount. Over the past year, since the arrival of our foster daughter, I have found finding the physical and emotional space to write more difficult so have slowed down significantly.  At the moment I can't imagine finding the time to finish my story or be able to self publish but I desperately want to share my story.

After much thought I have decided to share it here, in chunks - or chapters - over a period of time. Hopefully this will help me gauge response and reaction and, once I get to the end of what I've already written, it might spur me on to finish my story through writing in small sections.

Here is my first instalment:

July 2008

Defying the Odds

We sat in the scan room as the sonographer waved the ultrasound wand over my tummy.  Even when you have no reason to fear, every scan brings the element of dread with it - the 'what if?'.  The image of the baby appeared on the screen and the sonographer very quickly reassured us "there's the heart beat" before carrying on checking things and taking measurements.  We could see their head, the shape of their profile, their tiny arms and legs, their hands and feet.  We could see the baby moving about in amniotic fluid and reaching and stretching.  Perfectly formed - fearfully and wonderfully made. The baby seemed less wriggly than at the 12 week scan - maybe we were getting a chilled out baby who slept when they were meant to and woke when they were meant to?  The sonographer told us that everything looked fine and that we were having a little boy.  I couldn't actually imagine having a little boy - I had felt certain that we were having a girl but we were thrilled none the less.  We took one last look at him, certain it would be the last time we would see him before his due date nearly 5 months later.  We took the photograph home and proudly displayed it feeling excited and comforted every time we looked at it.

We had been married just under 2 years when we found out that I was pregnant with Samuel.  A couple of years before we got married I was diagnosed with Poly-cystic Ovarian Syndrome (PCOS) after years of ogliomenorrhea (infrequent periods) that had been very painful and VERY much on the infrequent side with me often going in excess of 6 months without having period.  At that time it was treated with 'the pill' which helped to give me regular periods.  On diagnosis we we're told that, until we stated trying for a baby, there would be no way of knowing the extent of my fertility problems but it was expected that we would have a lot of problems conceiving.  We weren't even married at the time, none of our friends had children and I was very career minded so the concept of broodiness was alien to me.

Our lives revolved around our Church community and work.  We attended a large, Christian Church in Liverpool and both became involved in Church life.  The majority of our friends attended the same church and in addition to this John played for the Church football team and I helped with the Sunday morning childcare.  Church was, and always has been, a big part of our lives together.  We joined our Church in 2005 after friends of mine made the progression there from the Church I attended as a student.  John came   along, on my recommendation, the following week and shortly after he became a Christian and proposed a month later!  Just before we got married, I was enjoying my first proper job following university which was the reason we had both found ourselves in Liverpool - John to do maths and management and me to do teacher training.  We both felt that Liverpool was home and decided to stay on after university which is when we met.   My job at the time was in the early years sector working for Sure Start so I came in contact with a lot of babies and young toddlers.  I have vivid memories of holding the babies and toddlers and being told by well meaning adults that "it suits you" to which I would shrug them off telling them that I didn't want children.  It was a long time until I realised that my reasons were a method of self preservation and formed out of a complete lack of acceptance of the fact that I may not be able to have children.  Infertility was a completely foreign idea and one that I refused to think or talk about.  

At the time of our wedding, one of my closest friends was pregnant and my sister in law was in the very early stages of pregnancy.  They would be the first people close to me who had children and when they were born, 4 and 7 months later respectively, my feelings completely changed and the fact that I might not be able to have children became more painful yet I carried on telling my story of not wanting children.  Every job I have ever done revolves around working with young children and their presence in my life, along with the presence of my nephew and my friends' new babies, began to intensify the new feeling of broodiness I was experiencing and, following discussion with John, I eventually decided to come off the pill in the hopes that my periods my start and become regular so that we could start trying for a baby.  When I stopped taking the pill I had the normal 'withdrawal' bleed and then began to wait for my ovaries to kick into action.  Weeks went by and then the weeks turned into months.  I began to get antsy but didn't see it as an infertility issue - we weren't going to start trying for a baby until I had got my first period.  But after 9 months my periods still hadn't started and I decided to go and see the doctor.  He chatted about my desire to start trying for a baby and suddenly the flood gates opened.  I sat in his room and wept.  I realised that I'd been seeing babies everywhere I looked and, even though we weren't officially 'trying', the pain of knowing that I couldn't even have a normal period (and therefore probably not ovulate to get pregnant) had become really painful.  He spoke about the stress that waiting for my periods to start could be having on my body and subconscious mind and referred me for a scan to get more of an idea what was going on.  He then advised that we stop waiting for a period and start trying in the mean time.  The doctor I saw was actually a Christian and asked if he could pray for me.  He prayed specifically that my mind would be put at peace and that, within a month of trying for a baby, I would find out that I was pregnant.  I went home to John, reassured that I was to have a scan, but with a complete lack of faith to belief for falling pregnant straight away.  The following Sunday at Church, Prue - a lady I barely knew and a new mum - came and asked if she could pray with me.  She felt that we were promised a baby and that it would happen soon.  Less than a month later, after my periods still not restarting, I found out that I was pregnant.  I called John, who was on some training at Church, and asked him to come home over his lunch break.  He arrived home to see the positive pregnancy test on the table and the two of us were delighted!

....to be continued....

As time passes inexoribly...

At the start of this year I decided to buy a mason jar to fill with memories from the year. A friend was doing it and I thought it'd be a great idea.reasonsn't wait to sit at the end of the year and look back through all of the pieces of paper remembering the joy and the tears from the year and being thankful as a family. The mason jar is sat on the shelf in our kitchen.........filled with........coffee pods. I put it to use after our coffee machine being put back to work. The jar had remained empty for months and by the time I remembered about it I felt it was too late to start filling it with memories from the last couple of months of the year.

But something has happened this week that has made me sit back and reflect on the year we have had and what I have to be thankful for.

My beautiful friend lost a baby at 14 weeks under horrible circumstances.

I don't want to go into her story here as it is her story and not mine but needless to say they are devastated. Like us, although for very different reasons , having a family has not been a straightforward journey for them.

Seeing her go through it has reminded me of the immense pain we were in 15 months ago having suffered our third loss in 12 months; a very early 7 week loss following a miscarriage at 10 weeks and a stillbirth at 32 weeks....full term for me due to a clotting disorder meaning I am unable to carry well into the third trimester. The pain is suffocating. Everything you hoped for is destroyed in one moment and your life suddenly takes a whole new course.

People who have read my blog before will know that 6 months ago we took the huge decision to stop trying for a baby following 3 years of loss,  prematurity and failed fertility treatments. It was the biggest decision we have ever made and has caused us to completely refocus our lives and rethink our priorities.

So here we are, 15 months after out last loss, having rebuilt our lives beyond any recognition of what they were like before the losses began - before we struggled to conceive and then lost our daughter at 32 weeks, 27 months ago.

So I thought I'd manually look back and imagine I'd filled the jar. What would be in it and what memories would we be reliving?

We were asked to consider caring for a little girl a similar age to Emilie.  The initial pain of the comparison between the two babies melts away when we hear her story and we agree to the placement.

Samuel celebrates his 4th birthday and our families meet my husband's half brother for the first time. We have a wonderful time getting to know each other and look forward to building relationships.

We go away on a family holiday to centerparcs and have fun making new memories together.

Our foster daughter arrives.  Our lives are changed for ever.

I facilitate my first parenting course...something I have wanted to do for years. My passion is working with children and families and the timing of everything over the last couple of years has meant that I am now able to do it without having to worry about juggling work! I go on to facilitate 2 more over the course of the year.

We continue to suffer from infertility which which breaks my heart on a daily basis. There are days when it is all I can think about. I am referred to a new consultant who agrees to a new course of treatment. I sob in his office - much to his embarrassment - purely at the relief of being listened to.

Our foster daughter's complex needs become more known and we are asked to consider caring for her on a permanent basis. We know that we cannot continue having fertility treatment and trying for a baby at the same time as caring for a child with additional needs. We decide to put our foster daughter first and stop trying to expand our biological family.

The relief is immense.

Samuel starts school. I have a month of slipping back into the clutches of depression due to a combination of missing him so much, knowing my life has moved on and Emilie's 2nd anniversary.

The fog lifts towards the tail end of the year and I am able to look back and realise how much I have to be thankful for and how far I have come.  I didn't think I would ever recover from the grief of losing a child and it is something that still effects me on a daily basis but we are still standing over 2 years on ..... Albeit sometimes only just.

And here were are at the end of another year.  I felt another wave of depression hit at the start of this week spurred on by the inexorable passing of time. I felt suffocated at thought of another new year looming and genuinely thought I was no further on than I was at the start of this year. Or the year before.

Looking back I realise how wrong I was.

And maybe I'll fill that jar in 2014...

Being 'That' Parent

Parenting a child with additional needs is more challenging than I had ever expected. The child's behaviour is challenging, the exhaustion is challenging, the physicality of parenting a child with additional needs is challenging but the most challenging aspect of parenting a child with additional needs is the reactions of other people.  

You know that it is not appropriate to go around saying 'the reason they are behaving this way is because they have............' Yet everything in me wants to shift the responsibility for their behaviour and, what may seem to an outsider, my lack of dealing with it appropriately.

A pen, a car or an item of food are thrown across a table, across a room or at an innocent bystander; hair is pulled; another child is hit and my reaction is to guide, rather than chastise.  Of course I give a firm 'no' and try to remove from the situation if appropriate but more rigid behavioural management strategies such as time out could be seen as rejection; physical restraint may be retaliated to; rewards are not understood and understanding/sustained interest is not sufficient enough to withdraw privilages. There are times when it feels like nothing works and having to leave them to cry it out on the floor seems like the only thing to do.  And then the moment passes and they calm down. You calmly explain 'we don't hit/throw/pull hair we need gentle hands' and the world is a calmer place.  Until it all begins again. And again. And again.

The looks that we are given - the tuts, the sighs and the stares cut deep and, on a difficult day, can make me feel incapable. So I often find myself leaving before things escalate again.  We gradually build up the length of time we can stay at places. I explain to trusted people that we may not be able to stay for long, that we may need to make a quick exit and apologise for being 'not all there'.  

Anything can trigger this cycle...a new room layout, unfamiliar sounds, unfamiliar faces, an unexpected visitor, an inability to find a certain toy, a new structure.....all of these things need to be addressed and the exposure to them needs to be increased gradually but it is a slow process.

Parenting a child with additional needs is more challenging than I ever expected.  It is also more rewarding than I ever expected.  You try over and over to work on something to no avail ..... And then something clicks.  There are changes in behaviour and increased ability to handle things - new situations, new stimulations, new people. Progress is made in ways you never thought possible and trust is developed.

 The most special, challenging, rewarding thing I have ever done is parent a child with additional needs. The journey is exhausting and is a constant learning process but, as a family of a child with additional needs, we are learning and growing together and are working out the best way to handle the situations we are in.  We are learning that additional needs are just that: additional.  Added extras. Different personality traits and a different way of thinking and being.  We are learning to be flexible and find our own ways to embrace additional needs.

The following is written about a birth child rather than a foster child but it still rings true. 

WELCOME TO HOLLAND

by

Emily Perl Kingsley.

c1987 by Emily Perl Kingsley. All rights reserved

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

 

When Heaven Touches Earth

Two years ago today I lay on a bed expecting to deliver my daughter due to reduced fetal movement. I have a history of premature delivery and knew that the chances of me reaching full term were very slim. I had reached 32 weeks - a week short of my son's delivery gestation 2 1/2 years earlier - as full term as I was ever going to get.

Instead time stood still as the news of our daughter's death was given to us. Two years ago tomorrow she was born.

Over the past two years we have experienced grief like I could never have imagined, grief that cannot be put into words. Loss of a child is a heart wrenching sort of grief.  It grasps your chest and prevents normal breathing. It takes over your every waking moment and controls the few sleeping moments you can manage, filling your subconscious with fears and obsessions, with fantasies that will never come to pass so that the grief hits in a fresh wave each time you wake up realising that it was just that - a fantasy. Grief is crippling and all encompassing worming its way into your relationships, your friendships and your family.  It tells you that life will never be the same, that you will never regain the joy that you have lost, that there is nothing to live for and no sense in trying. 

It hits in fresh waves, over and over, until you feel like you can't bear it any longer.  It is like running a mega marathon but never getting a second wind. Feeling the breath taken out of you, feeling the pain seize your muscles as the intensity of the run becomes too much...

...but not being able to stop.

And then, slowly but surely it eases. The pain doesn't go away. Time does not heal where the loss of a child is concerned but your capacity increases. The belt loosens and you slowly learn to breathe again, slowly rebuild your life and learn what the new normal looks like. slowly restore relationships, slowly relearn your purpose and get to know the person you have become following the breaking of yourself.

Slowly but surely the fog lifts.....

.... And you realise there is beauty .....

Heaven becomes a tangiable concept. A place so close that you believe you could touch it if you could just reach that far.  Death is no longer something to dread and God breaks through the stifling silence to reassure me that there is something else.  Longing is replaced by hope through the realisation that my daughter - and that my miscarried babies - are not lost to me forever. 

I wonder what she'll look like now, wonder what she'll enjoy. I become impatient to meet her but know that this time is not eternal, I know that one day I'll look back on this as a distant memory as I sit surrounded by my children and marvel at the heavenly beauty around me. 

And so heaven becomes real and a song resonates in my mind.....

Happy heavenly birthday, my beautiful girl.

Heaven is the Face

(Steven CurtisChapman)

Heaven is the face of a little girl

With dark brown eyes

That disappear when she smiles

Heaven is the place

Where she calls my name

Says, "Daddy (mummy) please come play with me for awhile"

God, I know, it's all of this and so much more

But God, You know, that this is what I'm aching for

God, you know, I just can't see beyond the door

So right now

Heaven is the sound of her breathing deep

Lying on my chest, falling fast asleep while I sing

And Heaven is the weight of her in my arms

Being there to keep her safe from harm while she dreams

And God, I know, it's all of this and so much more

But God, You know, that this is what I'm longing for

God, you know, I just can't see beyond the door

But in my mind's eye I can see a place

Where Your glory fills every empty space

All the cancer is gone

Every mouth is fed

And there's no one left in the orphans' bed

Every lonely heart finds their one true love

And there's no more goodbye

And no more not enough

And there's no more enemy

No more

Heaven is a sweet, maple syrup kiss

And a thousand other little things I miss with her gone

Heaven is the place where she takes my hand

And leads me to You

And we both run into Your arms