Friday, 28 February 2014

Crashing Down

24 and 25 September 2011

John and I had our normal Saturday night routine - Dr Who, X-Factor and Casualty - and I lay on the sofa waiting for movements.  I prodded my stomach and could feel a faint 'shifting' which reassured me although I knew that she wasn't kicking.  Not really. I was absolutely exhausted and decided to go to bed.  During the night I woke up experiencing pins and needles up and down one of my arms and had to take my wedding rings off as my hands were so puffy.  I went to the toilet and went back to bed although didn't really sleep.  Looking back, I am certain that I knew something was wrong.  When I woke up the following morning my face and neck were puffy, my hands were puffy and my feet and ankles were puffy.  I also had a terrible headache and cramping.  I asked John to take Sam to church without me so that I could get some rest-but the rest didn't come.  My head continued to ache and each time I prodded my stomach there was no response.  The baby seemed to have wedged herself in a position that was uncomfortable for me and I couldn't get her to wriggle out of it.  I spent the morning moving around, drinking sugary fruit juice and trying to get her to move but nothing happened.  As soon as John and Sam got home I called the hospital and sobbed down the phone.  "I feel really poorly and exhausted.  I've got a headache, I'm all puffy and I can't feel my baby move.". I told the triage nurse.  She reassured me over the phone but asked me to come down and get checked out.  We called round a few friends to see if anyone could have Samuel but couldn't get hold of any as they were all still at church.  I decided that we couldn't wait any longer and we took Sam into hospital with us.

We arrived at the assessment room and sat in the waiting room.  There were a couple of other women in there who were much bigger than I was and I looked at their sizable bumps jealously.  As we waited to go in, Sam became restless so John took him for a walk round the hospital to get a snack.  I sat in the waiting room nipping to and from the toilet to try and get a response from the baby. I carried on prodding my bump and couldn't feel any kicking but was reassured by the shifting motion that I could still feel.  I was certain that I was going to be admitted there and then for delivery, that the lack of movement was the same thing that had happened with Samuel as he began to become weak before he was delivered.  I'd even packed spare contact lenses and make up in my hand bag so that I could re-do my make up for photographs in special care after delivery.

No sooner than John and Sam arrived back from their walk was I called into the, now all too familiar, assessment room.  I was asked to give a urine sample and lay down on the bed for monitoring.  Immediately the midwife commented on the size of my bump and measured me commenting that I was measuring about 3 weeks behind - something to try not to be too worried about.  She had a feel of my bump for the baby and asked when I'd last eaten.  I explained that I'd tried some porridge for breakfast but couldn't manage anything.  She suggested that the lack of movement could be as a result of low blood sugar levels and wanted to run CTG fetal heart monitor test to reassure us.  I knew the score by now and fastened the pink and blue bands around my middle whilst the midwife positioned the sensors under the bands.  When she couldn't find anything she repositioned them, joking about what a 'little pickle' the baby was and how she was going to have wake up and say 'hello'.  Still, she couldn't find anything and carried on trying different positions and poking my abdomen.  Eventually, she said that the baby might be too small to pick up on a CTG and got a sonic aid to try again.  Minutes dragged by and I started to cry.  I kept reminding myself to be brave and telling myself over and over that the baby was just being awkward.  She pushed the sonic aid into my stomach and tried various positions.  Finally, I heard a heart beat but no sooner had I got my hopes up that the midwife stated "no, that's you.". This pattern repeated for a number of minutes as I stated to feel dizzy and was unable to hold back the tears.  Suddenly, my consultant walked into the room.  She said that she was on call and had seen my name on the board so wanted to come in and see what was going on.  I broke down as soon as she arrived and told her how bad I felt.  Looking back, I don't know what I'd have done had she not been there.  I know that, as hard as it must have been for her to tell us what had happened, there is no way I could have taken, or trusted, the news from someone I didn't know.  From a stranger.  When my consultant found out what was happening she requested a mobile ultrasound unit and it seemed to arrive within minutes.  I sat crying and sent a text message out to my most trusted friends.  I still have it on my phone.  It read "hi guys, please can we have some prayer over the next couple of mins. Just in hospital as had a bad night but midwife can't find any heartbeat for baby. Thanks x".  

The ultrasound machine arrived and my consultant began to scan me.  I could see the look of concern on her face and her furrowed brow.  It seemed to be the longest scan I'd ever had and she'd scanned me enough times for me to know that the first thing she always pointed out was the heart beat.  This time she remained silent.  After what seemed like a age she put the ultrasound wand down and said "I'm so sorry Claire but the baby has died.'. Immediately John began crying next to me and I started screaming.  There was no way I could control what was happening to me.  Anyone who knows me will know that I hate losing control.  I hate showing weakness, vulnerability or emotion in public and here I was screaming and shouting at the top of my voice in a room full of strangers.  The only thing I knew that would comfort me was Sam and I asked for someone to hand him to me.

The next few minutes are a blur as I remember being taken out of the assessment room and helped down the corridor to another room.  I carried on crying hysterically and couldn't focus on anything around me.  I know now that I was in the middle of a massive panic attack.  I sometimes find myself looking back and trying to piece things together in my mind but there are still huge gaps in my memory.  The walk from the assessment room to the bereavement room seemed to take forever and although we were accompanied by a team of medics I could only focus on myself, John and Samuel who was clinging to me not knowing what was going on.  With each step I took, my legs seemed to cripple more and I could feel myself sinking lower to the ground.   Once we made it to the bereavement room we were advised to let someone take Samuel whilst we talked.  I screamed and panicked at the thought of them taking away my little boy – my little girl had already been ripped from me and I hated being apart from Sam at the best of times and didn't want to let him go. I was told it was for the best to avoid him seeing us in such a state and know that that was the right thing to do but at the time I was certain that they weren't going to bring him back.  I called Faye and managed to get the words "I've lost the baby, please can you come and get Sam?" out on the phone.    

I can’t really piece together the next minutes and hours of the day – they seemed to pass in a haze of panic and dread.  I had, at some point, realised that our baby dying meant she was still inside of me and that we would somehow need to get her out.  I began to have another panic attack at the mere thought of having to give birth to her and begged the doctors to allow me to have a caesarean.  They explained that this would not be the best option for me due to recovery time and urged me to have an induction instead.  They explained that I would be given a tablet to block progesterone release into my womb and then would come back 2 days later for induction to begin.  2 days?!! How was I going to sit at home for 2 whole days pretending that nothing had happened and knowing that my beautiful baby was dead inside me.  Again the panic set in.  Eventually my consultant came into the room telling us that she had some news.  There was protein in my urine and my blood pressure was dangerously high indicating pre eclampsia.  I would need to be induced as early as possible. 

Faye arrived to take Samuel home with her.  He came back into the room and was oblivious to what had happened.  He was treated like a celebrity and had been given juice and biscuits by the midwives.  Someone had blown up a latex glove and drawn a face on it to make a puppet for him.  We kept this for months afterwards until I deemed it a health hazard.  I could never bring myself to throw it away and recently found it tucked into Emilie's memory box!

 Sam loves Faye and was more than happy to go home with her and spend the night with her, Mark and the boys.  I asked Faye if another friend could bring in my hospital bag, which I'd already packed, for me.  I specifically asked for any baby clothes, dummies, bottles etc to be taken out of the bag and for one blanket to be left in.  We have such wonderful friends and Sally, who brought in my bag, didn't even think twice about doing so.

Once Sam had gone home and I had stopped panicking, I asked John to call our Church leaders and let them know what had happened.  Unbelievably they all came out to the hospital to spend the afternoon with us as did Carol - a lady I'd been seeing for counselling throughout the pregnancy. I don’t know what we’d have done without them as their presence was so loving and supportive.  I think the panic would have continued for the whole day as we bounced off each other but I am certain that the fact we were able to talk to them meant that alot of our terrified emotions were contained on the first day prior to delivery.  

 My consultant popped in and out throughout the day offering amazing support.  One of the biggest ways in which she supported us on that day was to remind us what a special boy Sam was.  She kept reiterating how she couldn't understand what had happened but reassured me, in my panicky state, that nothing I had done would have caused it.  She carried out umpteen blood tests to try and find out what had happened whether it was the same thing that had caused Samuel to be born prematurely and growth restricted. Throughout the day, various people came to talk to us about post mortem and funeral arrangements but the whole day is a blur.  I remember saying over and over again to anyone who would listen that (at that time I felt) there was no point in trying to find out what had happened as I wouldn't be able to go through it again and wouldn't be having any more children.  I had wanted, and still wanted this baby.  I couldn't bear the thought of giving birth to her and not seeing her breathe, hearing her cry. The thought of finding out what had happened to prevent it happening to any future babies could not have been further from my mind at that moment and thank goodness that 
there are guidelines and protocols that have to be followed. Thank goodness for practical people who are able to function well and keep their heads in a crisis. I just wanted the whole situation to be over with. I wanted to go to sleep and wake up when it was all over. I wanted to forget it all. 

Instead we had to live through what no parent should have to endure.

Wednesday, 26 February 2014

Back to the Grindstone: Part 2

The weeks went by in a blur of appointments, ultrasounds and tests.  To our relief a strong heart beat was found at my 15 week midwife check up and the ultrasound at 20 weeks confirmed no abnormalities.  It also confirmed that we we're having a little girl.  A complete set!  Sam was going to be an amazing big brother and I couldn't wait to see what our daughter would look like.  There was one thing worrying me, however, so I asked the sonographer if growth looked ok.  She reassured us that everything looked fine but it was too early to tell about growth; third trimester was when fat reserves were laid and that would make the difference "between a six pounder and ten pounder", to which I muttered under my breath "or a two pound thirteen ouncer!".  

We came out of the hospital and I couldn't stop looking at the scan photo - my precious little girl.  I couldn't believe how lucky we were.  That evening I went out and bought a tiny purple dress and a pair of pink tights.  Every time I needed cheering up I would go up to the baby's room and take them out of the wardrobe just to look at them.  A week later, Faye found out that she was having another little boy.  She turned up with a huge box of tiny pink clothes from her sister that she had been holding on to 'just incase'.  I sorted through the box and lovingly placed the clothes into the baby's wardrobe - hats, tights, sun dresses, knitted dresses, cardigans and baby grows.   I couldn't wait to dress my daughter in the beautiful clothes.

We met with my consultant at 21 weeks before going on holiday.  It was such a relief to see our beautiful little girl again.  We could see her sucking her thumb and swallowing.  These are such precious memories of when she was so full of life.  Of all the photos we have of her, the pictures from this scan are my favourite as I remember seeing those signs of life.  We trusted, and still trust, our consultant completely and were very reassured when she said she was happy with the way things looked.  I was still worried about the size of my bump and thought about this the whole time but we had in front of us photographic and written proof that everything was ok.  We went on holiday the following week safe in the knowledge that this would be our last holiday together as a family before our lives fell apart 10 weeks later.

We had a really lovely holiday together but for me it was plagued by exhaustion and nightmares.  I had dreams about tiny micro preemies and giving birth to a non viable baby that was unrecognisable as my baby.  There were a number of times that I was certain that the baby's movements had slowed down and would want to lie still for however long it took for me to be comfortable with the fact that she was still moving.  I was worried about what would happen if I needed to go into hospital.  Neither John or I speak French and I had written down a number of phrases I had found online about obstetric problems, reduced fetal movement and premature labour, just incase.  I found myself wanting to check if any of the residents at the gites in which we were staying were midwives so that I could get thoroughly checked over.  Most of all I was obsessing about what would happen if my little girl was delivered at that gestation of 24 weeks - particularly without the hospital that I knew and trusted so well on our doorstep!  We arrived home two weeks later still in one piece and relieved that people started to comment on the fact that my bump had grown!

At 25 weeks I had another check up, this time with a different consultant.  He was very happy with how things were going and even felt that there was a chance I could go full term.  An appointment was made for me to see a specialist consultant midwife at 29 weeks to discuss delivery.  I was adamant I didn't want to risk going to 40 weeks and was hoping for induction or a c-section at 38 weeks so that I wouldn't have to endure the stress of 'going over' and the added risks that that held.  A week after my appointment I began experiencing cramping and wasn't happy with the baby's movements so called the hospital and was advised to go in for a check.  They seemed happy with everything and the CTG confirmed not only a strong heart beat but also picked up fetal movements.  The midwife tried to reassure me but I really felt that something was wrong.  She explained that I had been through a traumatic experience with Sam and of course I would feel on edge but that I needed to try and relax as everything was fine.  I went home but still couldn't get out of my head the possibility that something was wrong.  My next appointment was at 29 weeks so I tried hard to relax until then, at the same time spending each day allowing time to lie still simply to feel the baby moving.  I would take warm baths to feel her kicks in the water and would prod my stomach gently to feel her response.  As long as I could still feel her moving I knew that everything was ok.

The weeks went on and my following appointment confirmed that things were still  going well.  I was still having the cramping which was becoming increasingly uncomfortable but there seemed to be no probable cause.  I was torn between wanting my baby to stay inside me for as long as possible and just wanting the pregnancy over.  I felt awful and was permanently on the verge of tears.  I just couldn't accept that I was going to have a baby until she was safe in my arms and constantly compared the way I felt, looked and acted with other pregnant women including Faye and other friends who were pregnant.  It is as these times that you begin to realise how patient your friends are.  I don't remember anyone once telling me not to be silly or shunning my fears.  They stood by me and reassured me as much as they could.  

One of my last memories before Emilie's death was dropping Samuel off at the new playgroup that he had started.  As I stood waiting for the doors to open I got talking to another mum.  We exchanged small talk before she asked me how long I had left of my pregnancy.  I told her that I had about 9 weeks left and immediately saw the concerned look cross her face.  "You're very small," she exclaimed.  I began to justify myself and the situation with lots of rumblings about how I just carry small and that I've been seen at the hospital and everything is ok.  Her words, however, stayed with me all day.  Later that afternoon I went to the dentist for a check up.  Sat in the waiting room another lady asked me how long I had left.  I decided to try a different tact this time and tell her that I was 31 weeks.  Her reaction was the same as the playgroup mum's reaction and I was very relieved when my dentist called me into his room and congratulated me on the pregnancy rather than commenting on my size.  10 days later I would agonise over what may have been different had I just shared the concern of those ladies and gone to the hospital to get checked out.  Would my baby have survived?  The reality of the situation is probably not.  The problems that she had would have been so advanced by that week, and the onset so sudden, that had she been born, she would well have died in SCBU or endured severe brain damage.  There is no way of knowing for certain but for months afterwards I took comfort in the thought that there was probably nothing I could have done differently to prevent what happened.
The week leading up to Emilie's death was difficult.  John was in London with work, Sam's behaviour was struggling - possibly from the tiredness of starting playgroup and towards the end of the week I had developed a stomach bug.  Strangely enough, I don't have many other memories from the week other than that.  I remember feeling really poorly and going to the doctors on the Tuesday as I had had a nasty rash for a few weeks that was worsening and was exhausted.  I was given antibiotics and advised to rest as much as possible.  I put the stomach bug down to this.  I'd love to be able to remember more of the week;  how much could I feel the baby moving?  Was I experiencing any puffiness?  Had I had a bump or fall that could have exaggerated things?  Sadly I can't remember any of this.  In all honesty I can't remember the last time I felt the baby move.  All I know is that over the course of the weekend I became certain that she wasn't moving any more.

Back to the Grindstone: Part 1

Sam was about one when we started talking about having another baby.  We had always wanted children very close together but the problems we had had with Sam had made that less likely for us.  When we started talking about things, John was a lot more keen than me.  I was still suffering the trauma of having Sam (and later found out that I had post traumatic stress) and was scared of going through prematurity, and all of the problems that came with it, again.  I was also very happy working and, looking back, know that work was a distraction and an excuse for not getting pregnant again.  I even remember thinking that I was happy with just Sam and told John that, although I'd like another baby, I never wanted to be pregnant again!  John wasn't content with calling it a day though and I knew deep down that neither was I.  We were in the process of moving house at the time so decided to get that out of the way and then rethink the situation.  Once again I was seeing babies everywhere, my friends had begun to get started on baby number two and people who had been married for less time than us were having their families.  I was beginning to feel left behind and knew that it was time to start moving forward from the experience we had had with Sam.

We met with some good friends for dinner and spoke about how we were feeling.  I was terrified of not being able to love another child as much as I loved Sam.  I was worried about the possibility of our new baby being in special care and/or being disabled as a result of pregnancy difficulties and how this would affect Sam and any future children we might have.  When Sam had been in special care we met a number of other families and a couple of them had older children.  It seemed so hard to juggle their lives and attention between the older children and their siblings in special care and I couldn't work out how we would possibly do this.  SCBU was all consuming and I wanted all my attention to go on Sam and not on a hypothetical baby that may or may not come into existence.  Our friends helped us to understand that all of our feelings and fears were normal with uneventful pregnancies, let alone with high risk pregnancies that demanded so much time and attention.  They helped us realise that love wasn't something than ran out or had to be split between two children, but was something that was renewed and came in abundance so that each child was loved unconditionally but often in different ways.  The concept of unconditional love, for both children, is something I've only understood since Emilie's death in that I love her, regardless of what she can or can't give me.  I will never, in this lifetime, get cuddles and kisses, cards, presents or loving words from her yet I adore her inspite of this.  And so, with a sense of trepidation we decided to make a pre pregnancy counselling appointment with our consultant so that we could start trying for another baby.  We were reminded, at the appointment, of the action plan and medications that would see us through any future pregnancies and were advised to contact our consultant as soon as we found out I was pregnant.  A referral up to the fertility centre was also made for us so that we didn't have to go through months of trying without ovulation.  We returned home hope filled and expectant to fall pregnant straight away in the way we had with Sam.  That wasn't to happen.

Since having Samuel I had only had a couple of periods which hadn't bothered me at the time but once we were trying for another baby it, once again, began to consume me.  Months went by without anything happening and then, shortly before Sam's second birthday, I began to experience the tell tale pains that signified that start of my period.  We were at the birthday party of one of Sam's friends when the pains started.  It was a strangely bitter sweet feeling - I knew that it meant that something remotely normal was happening with my body but it was also categorical proof that I wasn't pregnant.  I was gutted. 

The weeks went by again after my period without anything happening and once again the weeks turned to months and I continued to throw myself into work.  My business partner and close friend, Faye, was also trying for a baby at the time and had been for a couple of years so we were both strangely comforted by each other's struggles.  As more friends announced their pregnancies we both remained significantly not pregnant.  We both had appointments at the fertility clinic within a couple of weeks of each other.  Faye had her appointment first and received clomid to take at day one of her next cycle.  A couple of weeks later I had my appointment to receive my tests results from my referral at the end of the previous year.  I sat in front of the doctor as she looked at my notes and told me quite simply that my test results indicated that I wasn't ovulating and would need to receive medication to induce a withdrawal bleed before having clomid to trigger ovulation.  I naively expected to be given the medication there and then and was distraught when I was told that another appointment would be made for me to see a consultant and receive the correct treatment plan.  My appointment date was 2 months in the future.

I drove home in a blur of tears and anger just wishing that, for once, my body would do something normal.  I arrived home where Faye was still working and poured my heart out to her.  I knew that pregnancy would be difficult for me and didn't understand why it had to be so difficult for me to even get pregnant in the first place.  It just didn't seem fair.  I felt for Faye who had been trying a lot longer than I had at the time and had also suffered a miscarriage.  I couldn't imagine longing for a baby and then having that baby taken away from you before having to endure years of unsuccessfully trying for a baby.  I longed for her to be pregnant as much as I longed for myself to be pregnant.

Feeling very low and tired I decided to make myself a doctors appointment to talk about what as going on.  Once again, I sat in the doctor's room and cried.  The previous 2 1/2 years or so had been so incredibly hard and had been taken up with either trying for a baby, enduring a high risk pregnancy and special care and caring for a baby with severe feeding difficulties.  Once that had become more easy we had thrown ourselves straight back into the emotional merry go round and I was exhausted.  As I was physically and emotionally exhausted, my doctor explained that he felt it was best that I didn't commence fertility treatment at that time due to how draining it can be.  He suggested that we try naturally for a bit longer before deciding what to do from there and ran a pregnancy test for completeness as I hadn't had a period for a few months.  He agreed with me, however, that it was likely to be negative but in the middle of work four days later on 22 March 2012 the phone rang.  It was one of the GPs from the surgery who called with the surprise news that I was pregnant!  She needed to book me an appointment as soon as possible to start my treatment plan and get me booked into hospital and referred back to my consultant.  Coming off the phone my shaky demeanor gave me away and Faye was the first person to find out our news.  I could tell that, inspite of her desires, she was truly happy for us.  I was terrified.  I called John when work had calmed down and asked him, jokingly, how he thought we would afford two children.  His reaction showed sheer delight.
A week later I woke up in the middle of the night with alot of abdominal pain and cramping I tried to sleep it off but couldn't take my mind off it.  The pain continued throughout work the following day and I decided that I needed to go to hospital to get checked out.  Once there I was checked over thoroughly and was asked the usual questions - was I experiencing bleeding? How severe was the pain? Was I experiencing any dizziness.  I had an internal examination which confirmed that my cervix was closed so I was given pain killers and was booked in for a scan the following morning.  I went home terrified of losing the baby.  I'd seen friends go through miscarriages and was certain that if I miscarried I wouldn't be able to handle it.  We arranged for Faye to have half of the childcare children the following morning and for me to pick the other half up after my scan, as long as things were ok.  I was annoyed at myself and at the situation.  I hated letting parents down and, as my scan was late, sat in the waiting room sending numerous update text messages to parents to continuously apologise for the time that was ticking over.  Finally my name was called and we went down to the scan room.  I nervously lay on the bed while the scan took.  Virtually straight away the sonographer confirmed "there's a good, strong heart beat, you're 5 weeks and 6 days".  I couldn't believe it-I was certain that I'd lost the baby.  The pain still continued but no cause could be found.  We returned home reassured and clutching the scan picture of our tiny bean on which you could see the tiny flicker of heart beat that had been miraculously caught on the screen snap image as it had been made.

The Easter holidays came as a very welcome break to work and I sat round at Faye's house one evening to complete our tax returns.  Knowing that I would be finishing work very early (in the July) to rest I decided that I would speak to Faye about keeping the accounts once I had finished.  I was worried about what a sensitive issue it would be. I desperately wanted her to be pregnant and felt guilty at her potentially having to continue working without me.  "When I finish," I began, "I don't mind still helping you out with the accounts - just until you've got your head around it?".  Faye smiled at me. "That's great but it won't be for long...". Straight away I knew why she meant.  We were to be pregnant together - I couldn't believe it.  I was so excited for her and so excited for us, as friends, to be going through our pregnancies together.  Our 12 week scans confirmed that there was a week between us.  I was due on 23rd November and Faye on 1st December.  There was no question of it in my mind - our babies would grow up spending time together and being great friends.  Nothing could have made me happier.

Sunday, 23 February 2014

Home and Dry? Part 3

A few weeks after Sam's discharge from hospital we had our 'debrief' with my consultant to learn the results of the placental histopathology from Sam's pregnancy.  I knew that the news wasn't straightforward when we were introduced to a haematologist who was also attending the meeting. We were also introduced to medical terms that I had never heard before and I remember making a conscious decision to learn more about IUGR and placental insufficiency.  The findings showed 'severe maternal vascular undersperfusion, featuring infarcts, accelerating maturation of villi and introplacental haematomas'.  My consultant explained to us that this was not normal placental development and was the cause for Samuel's IUGR and premature birth.  I was fascinated by the amount of information that could be gleaned from looking at a placenta after delivery!  I was desperate to learn more and gain more understanding about what had happened so spent time reading medical journal articles to try and improve my knowledge.  Although still somewhat sketchy, I learnt that an 'infarction' is 'an area of dead tissue in the placenta that is due to an obstruction of circulation in the area' the placenta had matured, and begun to die, too early meaning that Samuel wasn't provided with all of the oxygen and nutrients that he should have been provided with.  When the placenta was weighed it was found to be very small which was conducive with the other findings and occurrences.  It was explained to us that these problems could occur in future pregnancies and as these problems can be caused by thrombaphillias, blood clotting disorders, I had to have a blood test to confirm or rule this out.    The results came back a number of weeks later to confirm that there were no found blood abnormalities so I would be given low dose aspirin in future pregnancies, and monitored very closely, to keep me and the baby safe.  If there was a recurrence of the problem, or if I developed preeclampsia, the baby would be delivered early by C-Section.

When Sam was 12 weeks old things started to take a turn for the worse.  His feeding took a set back and he became more aggravated than he had been.  At first I put this down to his immunizations that he'd had a few days previously but when he didn't pick up I began to get concerned.  Some friends came down from Harrogate to see me for the day and I was so excited about them meeting Sam for the first time.  However, by late afternoon he hadn't taken a single feed properly, had brought up anything he had taken and was very sleepy and floppy.  I had to call the doctors to get him an appointment and was thankfully able to get an appointment straight away.  I gave my friends the house keys and asked them to post them through the door when they left.  The perfect hostess as always!  Thank goodness they are good friends who know that that is not my usual behaviour!  He was checked over at the doctors and nothing seemed to be wrong with him.  The doctor thought he may have reflux and prescribed a feed thickener for him.  I picked up the prescription and returned home, relieved that things should start to improve. 

Over the course of the next few weeks Sam's feeding continued to deteriorate.  I began to feel like I was spending the whole day trying to wrestle bottles down Sam when he obviously didn't want them.  He would cry because he was hungry, take a tiny amount of milk and then cry as if he was in pain.  He would quite often bring up the whole feed within half an hour of having it.  It would take him a good 45 minutes to take this tiny amount so that by the time he was finished he would be so tired that he needed a sleep.  He wouldn't have taken enough milk to get him through for long so would then wake up uncomfortable and so the cycle would continue.  One night I got ready for bed as John gave Sam his last feed.  Things seemed to be going relatively smoothly until I heard John call my name on panicked tones.  I went into Sam's room and found them both covered in vomit.  I took and cleaned him up whilst John cleaned himself up.  We then did our best to clean up the vomit all over the feeding chair.  Sam had seemed hungry and had taken his milk but had turn brought up that feed and seemingly the rest of the milk that he had had throughout the day.  He was inconsolable.
We returned to the doctors the following day and were prescribed ranitidine, which helps to prevent excess stomach acid from flowing back up the oesophagus, in addition to the feed thickener.  He seemed more comfortable but the improvement was short lived.  

A week later I attended a mum and baby group with my friends.  I was tired and emotional and felt like Sam's dysfunctional feeding was taking over my life.  A small group of us sat in a quiet room at the baby group for a baby massage class that we had been taking part in.  I loved attending this group.  Throughout the session we would be plied with hot coffee and toast and the ladies who ran the group were more than happy to take our babies for a few minutes so that we could have a hot drink or something to eat.  My friends and I felt truly cared for at this group.  At the end of the baby massage class I gave Sam his milk before he became too sleepy.  Surprisingly he did really well with his feed and took a good amount.  I was delighted.  One of the leaders made me a  cup of coffee and brought it to the quiet room so that I could keep Sam still and upright until his feed had settled.  I sat for a good half an hour before getting up to go and join the others for lunch.  As I walked across the room Sam's whole body went tense and he brought up the whole feed plus, I think, everything from throughout the day.  I was covered in vomit, soaking wet and smelly and only had a change of clothes for Sam.  The exhaustion took over and I began to cry.  Again we returned to the doctors and this time were referred to the hospital to see a specialist.  Sam's weight was checked and although he was still very tiny he was gaining weight as a result of our perseverance to keep feeding him.  None the less it was obvious that we were struggling and that he was uncomfortable.  In addition to the medications he was already on he was prescribed domperidone which helps encourage the stomach to empty before taking more feed - the idea being that it would prevent nausea and vomiting.  By this time, however, Sam had begun to associate his bottles with discomfort and had developed a feeding aversion.

Over the next few weeks we spent a fortune trying every bottle, teat and feeding cup that we could find to try and make feeding easier for all over us but Sam continued to fight his feeds. He would scream, wriggle and arch his back yet he was hungry and, as a result, uncomfortable so was very hard to console.  I withheld from going out to toddler groups, other that the one that I loved, because I couldn't handle feeding him in front of other mums who I didn't know.  John and I spent hours in Starbucks just to find a new environment to feed Sam in.  Other than seeing friends who I was comfortable with, and even then I would often make a quick escape to avoid feeding in public, I didn't really see anyone or go anywhere and began to feel isolated.  It is through this that I began to trust my 'mummy friends' who were willing to spend time with Sam and I even though we came as a very noisy, stressed and often vomity smelling package!

When the feeding aversion continued we were referred to a dietician.  With her support we weaned Sam onto solids and began to see an immediate improvement.  Finally he began to be more comfortable and content.  He seemed to enjoy his solids, all be it in very small amounts, and very quickly learnt to feed himself and become independent.  Things started to look up!

When Sam was 7 months old, I went back to work. I set up my own childminding business and very quickly my places filled up.  Not long later a friend, Faye, came on board with me and we offered the childcare together. be continued ...

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.

Wednesday, 19 February 2014

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 and here
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! be continued....