Walking? How overrated!

Skye’s first birthday marked the start of a very frustrating year for all of us!  She had begun sitting unaided slightly late at 10 months – the age her little friend had started walking!  Skye wasn’t even crawling by her birthday.

In June she began to commando crawl – it was very funny, we used to call her our little zombie because she would drag herself along with her arms and just let her legs trail along behind.  In July we visited friends and Skye learned to crawl ‘properly’ on a trampoline of all places!  She soon began pulling herself up to standing and shuffling her way around furniture.

On our return to the Children’s Development Centre (CDC) we’d been attending since Skye was 5 months, we were told she was doing fantastically and they checked that we realised that when she started walking unaided we would have to leave.  I begin to plan for leaving at Christmas.

We waited and waited for her to take those elusive first steps – people kept telling us that she’d just stand up and walk very soon.  We kept waiting.  She loved to walk pushing something, but just couldn’t manage on her own, much to her great frustration.  She had to sit and watch her friends running around, or try to crawl after them.  Mother’s intuition told me something wasn’t quite right...

Just before Christmas one of the leaders at the CDC asked me if I’d like to see a physio.  We’d been discharged by physio when Skye was 8 months – before she was even sitting unaided – something I’d never felt particularly happy with.  I jumped at the chance to see a physio without having to go through the whole re-referral business so went in the following Friday to see the physio.

She moved Skye’s legs and feet to see how tight her muscles were and also watched her walk.  She said she wasn’t too concerned, that Skye’s hips and ankles were incredibly loose so she was very unstable, but that she would monitor her.  We saw her every month or so for the next few months, also seeing another physio for her opinion, which tallied with the first physio exactly.  I could see, however, that the longer she didn’t walk, the more closely the physios watched her!

Around her second birthday she began to stand unaided for a few seconds (building up gradually to half a minute or more) and was also able to bend down and pick an item up from the floor while standing.  I started thinking that maybe her problems did stem from hypermobile hips and ankles after all.  Then we had a session with the physio where she told me she wanted to refer Skye to the community paediatric team.  She had a feeling there was something more at work and wasn’t able to give a diagnosis herself.  I hit Google with a vengeance and discovered that the diagnosis that was most likely was cerebral palsy.  The bottom fell out of my world for about an hour.  Then I gave myself a mental shake and reminded myself of 4 things:

• We were lucky to have her at all, considering her early birth
• Having a diagnosis wouldn’t change who she was
• Since we’d got to her 2^nd birthday before diagnosis, it must be mild
• Having been a teacher, I knew that having a ‘label’ was a great help in accessing support

At the beginning of June came the moment we’d been awaiting for so long – Skye took her first steps.  She was very wobbly and fell over often, but she was walking! 

A few days later I took Skye along to her first appointment with her paediatrician.  By now I was hoping that she WOULD diagnose Skye with something as I hated not having an answer.  She watched Skye, listened to the physio, moved her legs and arms, did various other tests and then asked me what I thought she was going to say.  I told her I’d looked into it and I thought it was CP, she agreed and told me it was a type of CP called spastic diplegia.  She made sure I realised that it didn’t change who Skye was, or what she would achieve – It was simply a term to describe the way that her limbs behave.  She also set up an appointment to talk to John so he had a chance to ask anything he wanted to discuss.

We felt very cared for and whilst it wasn’t what we would have wanted for Skye, it felt a very positive meeting.

Home at last!

So finally we were all together at home – a happy family.  We were thrilled and looking forward to the days ahead.  Whilst in SCBU Skye had been a model baby – waking 4-hourly for her feeds and then sleeping between.  On night 1 at home we were in for a rude awakening!  Skye woke every 45 minutes wanting to feed, and would only settle between feeds if one of us was cuddling her.  We tried lights on, lights off, white noise, my t-shirt in the Moses basket, the lot!  Nothing worked.  The Health Visitor told me it was common for a premature baby to feel very unsettled once home because it was such a different environment to the one she was used to.

As the days went on a pattern began to emerge.  Skye preferred to be cuddled and wasn’t terribly happy in the Moses basket, she would also scream from about 4:30pm until about 11 or 12.  It was a terrible time.  We tried colic remedies, reflux medications, massage, cuddles...  It was horrible watching her in pain and being unable to help.  As she grew, the screaming reduced – I can’t tell you when it stopped.  I can’t honestly remember.  However, in September it was awful and by Christmas it had settled.

In October we began weaning her.  She loved it, was keen for most things – and flavours she didn't like, we simply mixed in a bit of apple puree and she’d wolf it down!  Soon she was eating all sorts of foods and we had a freezer full of cubes of mush!

By February, aged 10 months (7 months corrected), Skye had been discharged by her physio and her paediatrician.  She was beginning to sit unaided, had settled down into a rather more placid child (as long as I stayed by her side) and life was good.  Then she got a cold – no big problem, she’d had colds before and was fine – but this time things were different.  She was having trouble with her breathing and was working very hard.  We went to the doctor who sent us to the children’s ward at the hospital.  They monitored her and decided she needed to be admitted overnight to be monitored.  Unfortunately the local children’s ward is a day unit only, so we had to be transferred by ambulance.

We ended up staying for 3 nights in the hospital – Skye had bronchiolitis and required oxygen to help her keep her blood oxygen levels up.  She was very cheerful throughout, despite people poking her and prodding her at all hours of the day and night!  On day they discharged her, she had a bit of a temperature and was a bit grumpy, but they weren’t worried and so home we went.  2 days later it became apparent Skye had chicken pox!  She wasn’t too miserable with it, so we put cream on her spots, took it easy and soon she was better. 

A few days later she got another cold.  We didn’t worry too much until we came home from a walk and noticed she was blue around the lips!  She was struggling to breathe again so off we went to the Out of Hours doctor and again we were admitted (another ambulance transfer!).  We were put in the room we had vacated only 2 weeks before and she was given oxygen and monitored again.  Halfway through the first night things got exciting...  Her blood oxygen levels were about 80-85 (95 or over is preferred) and that was when she was already being given oxygen!  They turned the oxygen up and up... and up but her levels were being very stubborn.  We were moved to the High Dependency Unit so they could monitor her more closely and we were warned that she might be put on CPAP (a type of breathing support she had for a few weeks when newborn).  Luckily her levels rose and they were able to turn her oxygen down gradually.  We were moved back to a normal room the following day and two days later we were home again.

By now I was getting paranoid about letting her near people who had colds!  I didn’t want to wrap her in cotton wool, but 2 readmissions in 2 weeks were a bit scary!  I avoided toddler groups for a while to let her get properly better and asked my friends to let me know if their little ones were ill so I could cancel arrangements to play.

In April 2000 we began to plan for her birthday – we had a little party for her friends from baby group and she had fun playing with them.  One of her friends had started walking and we were all chuckling at the wobbly walk and looking forward to ours doing the same.  We also had a barbecue for our adult friends who had supported us through our first year of parenthood.

It was amazing to look back and see how far we’d come in the last year!

How it all began...

This post was first hosted by my very good friend on her blog for World Prematurity Day.  It explains how our story began.

Everything progressed normally with my pregnancy as 2009 began.  I was excited, but refused to get too emotionally attached to the baby growing inside me until I reached 24 weeks – viability in my eyes.   Also, I didn’t like to decorate, etc ‘just in case’.  There was absolutely no reason to think that the pregnancy would be anything other than perfectly routine and unexciting, but still the magic 24 weeks seemed to take forever to arrive.  After 24 weeks we began to prepare the house for the baby – beginning with our room as that would be where baby would spend the first few months.

During the Easter holiday I mucked in with preparing the bedroom for the plasterer - I scraped wallpaper off the walls.  As the first week went on I began to get some pains at night.  It was waves of discomfort, not unlike period pains.  It would ease off overnight, so I chose to ignore it and assume it was just pains as my body adapted to its extra passenger.  I did begin to do less DIY though!  We went away with friends over the Easter weekend.  Whenever I did too much walking the pains would increase, but by morning they’d ease off.  I phoned the delivery suite at the hospital once we were home, expecting to be told it was perfectly normal, and instead they told me to come in.  I went in and they monitored me for a while before telling me that I’d simply done too much DIY and I should go home and take it easy.

On Monday 20^th April 2009 I went into work.  Throughout the day I was having waves of pain so severe I could barely stand straight.  I kept reassuring my colleagues that it was simply that I’d done too much over the holiday, that I would be fine in a while.  That night they became even more painful and I experienced a small amount of blood loss, so I called the hospital again.  Back in we went!  They monitored me again and told me it all seemed fine but that the consultant would take a look.

He told me that they were going to try to stop my contractions, that I had very little cervical length left and that they were going to give me steroid injections and send me to the larger hospital 7 miles away.  His words were ‘Your first goal is to get there without delivering!’  At this point terror began to set in – I was 27 weeks pregnant and suddenly someone was talking about contractions and having a baby!  Luckily the drug they gave me to stop my contractions worked and as the ambulance drove the 7 miles, my contractions slowed down and stopped.

The next day the consultant came to tell me I had an infection and would have to deliver the baby the following day.  However, he also added that there were no special care cots available, and that the nurses would have to phone the hospitals around to find one which had space and facilities to cope with such a small baby.  4 hours later, I was told I was transferring 75 miles to the closest hospital they could find with space!

I was transferred by ambulance and once there they told me they wouldn’t keep giving me the drugs to stop labour.  Apparently it wasn’t the way things were done in this PCT!  The next day passed in a haze of monitoring, at the end of which they told me I didn’t have an infection, I didn’t need to deliver the baby and so they were going to send me home the following day – after a more detailed scan of the baby as it was measuring small for my dates.

That evening, the familiar aches started again.  By midnight they were really ramping up and there was more blood loss.  I called for the midwife who told me that I was fine – I wasn’t having contractions at all and not to be silly.  When she realised how regular they were she decided to call a doctor to do an internal exam to check all was fine.  I was 3cm dilated so we headed down to delivery!

By the time they had found a heartbeat, I was fully dilated and ready to deliver.  I was told to push with the next contraction, so I did.  I remember the midwife saying ‘Slow down!’ and thinking ‘How am I supposed to do THAT?!’ before the midwife caught the baby!  I was thinking ‘It’s pink!  It’s screaming!’  I hadn’t expected either of those things.  As the baby was put inside a plastic bag to retain warmth and moisture all I could see was arms and legs pushing against the bag, and I thought ‘Feisty – a good sign!’

The midwife suddenly thought to ask whether baby was a boy or a girl and we were amazed to hear it was a girl – we’d assumed it would be a boy!  By the time we had agreed on her name – Skye Elizabeth – she had been ventilated, packaged in a plastic bag and incubator and was on her way upstairs to the SCBU ward.

I was able to stay in the hospital for a week, at which point they had to discharge me.  Luckily, due to our circumstances, my husband was also permitted to stay in my room for the week.  After that we were left to find ourselves hotel accommodation.  We spent each day at her side, updating friends and family daily through a photo website.

We had been warned that there would be good days and bad days.  The first bad day was on Day 4 when we were told she had an infection and needed a blood test to check her out and she might need a blood transfusion (luckily antibiotics worked quickly and she needed nothing else).  After this, however, we only seemed to have good days – the doctors were all really pleased with her, and she was doing very well.  This in itself made me feel guilty – I could see friends we had made in Special Care going through tough times with their babies, while we were having an ‘easy ride’.  All we wanted was to have her closer to home!

3 weeks after her birth, we received the news that she was being transferred back.  We had to learn the routines and rules of the new unit, but we were so pleased to be home.  Exactly one week later she was transferred again – from the higher level care at the larger hospital to the local SCBU ward.  I remember the feeling of shock I received when a baby went home from this room – it was a room babies went home from – soon it would be our turn!

We spent 5 weeks in that ward.  They felt like forever.  We gave her her first bath, we tackled breastfeeding, she moved from incubator to hot cot and then to a normal cot.  We even tried ‘rooming in’ to prove she was ready to go home.  What a disaster!  We stayed in a room on the ward, and had Skye in with us.  She didn’t sleep, wouldn’t feed and simply screamed the whole time.  At 4am I took her to the nursery in desperation and sobbed as one of the nurses cup fed her for me and suggested I go back to the room to get some sleep.  I felt useless – I was her mother but I couldn’t feed her or look after her.

Throughout the next week, however, her breastfeeding improved and we began to think that we might be going home soon.  A few days later, I went into the unit and was told she couldn’t go home until she’d done 24-48 hours without her feeding tube in, that she refused to cup feed anymore because she wanted to suck and that I should agree to let her have a bottle overnight otherwise she wouldn’t feed.  I was reluctant but was about to agree because it was the only way I could see of getting her home. 

Another nurse came along and asked me if I wanted to take her home.  When I said yes, she persuaded the doctor on the round that Skye was ready to go home, that she would feed fine once we were home, and that he should discharge her.

At 4 o’clock on Friday 26^th June 2009, we left the SCBU for the last time – but this time we took our daughter with us!  She was 9 weeks and 1 day old, which made her 36 weeks and 5 days gestational age.