Bliss

This evening Bliss have shared our story online & I really hope that this helps raise awareness of PPROM & the amazing work that neonatal teams across the country do.  Without them lots of us wouldn’t have our little bundles of fun at home.  If you can support either Bliss or SSNAP  you’ll find details on their websites http://www.bliss.org.uk/page/yourjourney/were-here-to-help & http://www.ssnap.org.uk

Later this year a friend & I will be crazily attempting to complete Offas Dyke (177 miles) through the medium of running (eek) & canoein in just 8 days  to raise money for both charities – so watch this space for tales of exercise prowess (read pain & torture) over the coming months!

Feeling better

21-22 weeks

Before the 20 week scan I hadn’t really been ‘leaking’ much water so if it hadn’t been for having to take it easy, twice weekly visits to DAU & weekly blood tests I could have almost pretended that I was a normal pregnant lady!  I must have known things were about to start changing, as on the exact same day I’d picked up a diary to keep a journal of thoughts (rather than just the one containing temperature & pulse for the midwives), was the exact same day I started to bleed, a after month after my waters went.

“Friday, 30th May, 21 weeks.  A rubbish start to the day.  Woke up this morning & felt what i thought was a leak but turned out to be a bleed.  Called Jon back from work.  A day full of waiting & although admitted, I don’t seem to know anymore.  On the plus side baby is still moving & thank god for Emily on the observation ward as she realised that a high risk pregnant woman probably wouldn’t want to be on the same ward as the lucky women with beautiful crying babies.’

Saturday, 31st May.  Rubbish nights sleep.  Obs all normal & I’m sure I can feel baby moving again.  Tiny amount of blood today. Hopefully they’ll take the drip out soon as it keeps catching on clothes. Doctors finally came round at 6pm – I can go home but if I bleed again I have to come back in.  Baby is moving again & once I even felt as if I was going to wet myself when a sharp kick felt like it hit my bladder! Got home around 8 – shattered. Desperate to make it through the next few weeks.  Bed rest it is.

Wednesday, 4th June. Jonny’s Birthday! Jon flying today so spent the day baking a birthday cake for him.  No amniotic fluid loss today.  Back at hospital tomorrow – only 2 weeks to go until the next goal!

Monday, 9th June.  Consultant Day.  Different consultant this time but he was nice.  The wait took forever.  What is it about waiting rooms that gives you the heebie jeebies? So, kidneys, head etc look normal.  He said the lungs look about the right size but there wasn’t any fluid in the stomach.  Bad news. He talked about the high chance of handicap because the baby is going to be premature.  How premature we just have to wait & see.  I am scared too but how can you not have hope when you can feel the baby moving?? He talked about the caesarean thing & I assured him that there was no way anyone was sticking a needle in my back again.  Struggling with other people today.  Why do some people not think before they speak? Thank god for the girls. ”

 

Home & Puppy Pads!

Well we made it home thankfully on Tuesday afternoon after weaning Gwen’s oxygen down.  Still coughy & yucky so the following 2 nights & days were quite ‘busy’.  On Wednesday morning when by 9am we were up to 2 baths for Gwen, 3 changes of clothes for mummy & a trail of very clean carpet leading from her room to the living room, I did contemplate covering all the carpets with puppy training pads! Unfortunately the dogs were in kennels so I couldn’t even rely on their disgusting keenness for baby vomit.  One thing is sure though – this prem baby has an exceptional gag reflex!  Great for weaning… not so good for a cough… Last night we only had one coughing fit, so almost back to sleeping through the night & thankfully she’s only needing a little more oxygen at night which I can do at home. We even managed to blow some raspberries in our porridge this morning.

Hospital was ok & whilst Gwennie caught up on her sleep (she chose hospital to sleep for 14 hours straight not even waking up for her coughing episodes) I think I join most mums & dads in finding the cotbeds an ‘interesting’ sleeping experience.

 

You know that awkward moment when you meet someone that you’ve either been really drunk in front of, spaced out or they’ve seen you naked (& not your husband)? I had one of those moments while we were at the hospital.  The neonate registrar that came to see me when I was in labour & delivered Gwen – well he was the duty reg on the ward on Monday.  Lovely to see him & for him to see how well Gwen has done – but all I could think was ‘oh my god, you’ve seen me high as a kite & half naked’. I really hope he couldn’t remember some of the horrendous jokes Jon told me I had been cracking!

 

 

Just a cold…

Sometimes people ask me why I don’t want people with colds or that have been round people with coughs/colds etc.  “Its just a cold” I’ve even been told a few times.  Well colds aren’t necessarily just colds even with normal full term babies but add prematurity & oxygen into the mix & you’ll soon understand why a cold is not just a cold to us!

So here we are.  Back at the JR.  There vulnerabilities to coughs & colds are one of the slightly major downsides to an oxygen preemie baby.  Two weeks ago we had the go ahead to reduce Gwens oxygen as she was doing so well.  Then within 24 hours she had a bit of a dry cold & needed to go back up to the level she was on before.  The from about Friday lunchtime she seemed to lose interest in her food (she LOVES her food & 32oz daily is the norm for her), wanted to sleep & cwtch lots. All the typical signs of teething were there; saliva drooling out of the mouth, nappy rash, obsessively chomping down a dummy & pink cheeks.   Friday night she started coughing & vomit everywhere!  Saturday a quick trip the GP as she was still vomiting & there seemed to be even more mucus – a slight even crackle on her chest but nothing serious & some preventative antibiotics.  okey doke… so back home & time to walk the dogs.  As I walk back in theres vomit quite literally everywhere, Gwens just had a coughing fit & all the vomit has gone everywhere & she’s now struggling with her breathing a lot more.  In trying to check her saturation levels upstairs on the monitor I struggle to find a good reading & highest is 92.  So NHS Direct time – & they decide to send us an ambulance. I normally pride myself on being cool as a cucumber when it comes to stuff going wrong as I don’t want to panic Gwen but I could feel myself getting more & more worried. Always seems to happen when Jon’s away with work!

Fast forward 48 hours later & we’re on the ward.  Her first night was horrible & everytime she coughed she quite literally coughed with her whole body & she would need extra oxygen on top of the increased level she’d already been on.  Last night her cough wasn’t so bad & this morning we’ve reduced her oxygen a bit. Suction (putting something like a miniature hoover up her nose) seems to be helping & its really quite gross whats coming out. Back up to normal volumes of milk & she hoovered up half a jar of baby food this morning.

Hopefully not too long before I can take her home to carry on ‘the recovery’.  So far I’ve successfully distracted myself from boredom on the ward with movies, uni work, a run & actually sitting down to do this (whilst keeping a close eye on Gwen as she keeps pulling her tubes out!)

Thats my first world problem of the week anyway – god I hate colds!!!

Rucksack Doggy Walks

Last weeks purchase was a new rucksack.  My hubby LOVES gadgets & as he doesn’t need anymore (or allowed anymore) it means that baby gadgets are in.  When he’s been away so far I’ve been walking the furkids with the pram, but as doggy mums know, that makes it quite restrictive with regards to where you can go – even with a robust pram! Gwen’s head control is now good enough for her to go into a rucksack.  Fortunately rather than chucking her in any old rucksack, hubby relished the opportunity to do some ‘gadget research’.  Cue our new Osprey monster.  It does mean I can now do longer doggy walks a bit more off piste (all part of the get fit again plan) & we took adventure of some sun last week & trialled it in walking across the fields to the pub (as you do).  Jon has achieved gadget success but a chubby baby & an oxygen cylinder are quite heavy when you haven’t carried a rucksack in at least a year! She seems to love it, tends to have a good look around before falling asleep & snoring in my ear for the next 30 minutes. With this extra spring burst of walking exercise, I’m not quite sure why I chose this week, to try a buggy friendly exercise class as well. This evening kneeling down for bath time & getting back up again was seriously emotional!!!  Jon’s away for a couple of weeks so any way of getting out & about in the fresh air is appreciated.  I do wish spring would arrive though – I want to get rid of all the horrible bugs so we can try & start weaning Gwen’s oxygen!!

Rucksack tastic

Making it to 20 week scan

Well not only did I make it out of the hospital a week after my waters went but I made it to the 20 week scan.  After I left the hospital everything felt very normal – except that my husband insisted on doing all the chores..   He had even gone out & bought a steamer & steam cleaned the whole house to help avoid infection (shame he’s not always that keen to steam clean for me).  I don’t think I’ve ever stayed so still & watched as much tv in my life.  Twice a week we drove over to the Day Assessment Unit in Fetal Medicine for a check of baby’s heartbeat & blood tests for me to check for infection.  The midwives there are absolutely amazing.  Every time I went in they were positive & supportive & more than happy for me to talk through any things I’d found out elsewhere about waters breaking early.  By this point I could have told any full term mum a million ways to start labour off as I’d looked up all of them so I could try & avoid them myself!

The 20 week scan was booked for the day I turned 20+1 & our appointment with a fetal medicine consultant planned for the next day.  The hardest thing about the 20 week scan was actually the waiting room.  It was the normality.  Up on DAU & Fetal Medicine, there were lots of women with various pregnancy complications so everyone always looked a bit worried.  Down here everything was normal,  proud dads queuing to buy the token so they could have a photo of the scan & happy mums reading the various leaflets about what happens next.  I would never ever begrudge anyone a second of happiness in celebrating their baby, as if I could stop this happening to any other mum I would, but it doesn’t mean that normal isn’t hard.

The lack of waters made it difficult for the sonographer to do the scan but she told me she could see baby moving.  Face, spine, heart & brain all looked normal & she could see some small pockets of water around baby & some in baby’s tummy!  By this point that meant the whole world to me as I knew for there to be fluid in baby’s tummy she must be swallowing some fluid!  Another fantastic sonographer, who insisted we had a scan picture to take home even though it wasn’t a pretty or even easy to read one!

The next day we went in to see the consultant. She did her own scan when we got there but didn’t give anything away at all.  You always know it’s going to be a difficult conversation when they take you into a nice room with comfy chairs & a box of tissues on the coffee table! She was calm, factual but sympathetic. She agreed with the scan from the day before, in that baby had continued to grow, appeared structurally normal & that there were some pockets of water. We were told the major challenges that we were facing were trying to keep fluid levels up for the baby’s lungs, avoiding infection & preterm labour. There was only a 2% chance that we would deliver a healthy baby & they couldn’t speculate on how far I’d progress with my pregnancy before developing an infection.  She talked through all our options again including termination.

I can remember telling her calmly & clearly that I completely understood all the risks & what a small chance of a baby we had. But I was sat there, with a tiny baby kicking me & I’d just seen a baby that appeared healthy on a scan.  I kept coming back to ‘how could I give up on the baby when she hadn’t given up on us’.  We knew the chances of me reaching even 24 weeks were tiny & that the baby would need to ‘cook’ for much longer to have a good chance but at 20 weeks I didn’t see any other choice.  The best thing that the consultant said to me? She didn’t argue or try to dissuade me, she simply said “Its not hopeless, you could be that 2%, but it’s risky for both of you”.  To someone who’s already been told a couple of times that there was no hope or that baby was dying – it was like handing me a ticket to the lottery.

Decision made, the plan was to continue with twice weekly checks on DAU & then in 2 weeks have another scan & see the consultant again.  It was emphasised again that at this stage of the pregnancy if I did develop an infection, my life would be prioritised over baby’s because of the gestation.

What a 20 week scan with hardly any waters looks like!

20 Week Scan

PPROM Decision Day 1

I was now sat on my bed on level 7 waiting to find out what was going to happen next.  Despite being told I was expected to be going into labour within 48 hours of my waters breaking I still felt completely normal & not any different physically.  My blood tests were back & there was no sign of infection & my temperature & pulse were normal.  The hardest bit about the regular observations were when they listened to babies heartbeat.  Every time they looked for it I was expecting them to not find it as I’d been told to expect the worst, so I’d have a surge of relief when they found it.  On the Tuesday an obstetrician  told me they wouldn’t be doing a scan for another few days as they were still expecting me to go into labour.  When they did scan they would be looking to see if the baby had grown & if there were any waters left.  I spent every minute online looking for any experiences or research on waters going early & whether there was any hope. There were lots of stories from the USA about people being given antibiotics to prevent infection but I’d already been told by the doctor that it was a hospital policy not to give antibiotics at this stage & there was hardly any information on successful outcomes or pprom experiences in the UK.

It was the Thursday morning that stuck in my mind as being one of the worst moments of the whole pregnancy.  Jon was now in the habit of coming in not long after 9am so he could miss the traffic and so far the doctors never seemed to visit until much later in the day so we assumed he’d be here in plenty of time for rounds. I had an ultrasound with the sonographer booked for later that morning so I wasn’t expecting any doctors to come & see me before then.  Before I’d even had a chance to have my morning shower one of the obstetricians came round to my room.  I’m sure she never meant to be harsh but looking back I wish I’d asked to have one of the midwives in there with me or had the presence of mind to say I didn’t want to talk to her or have a scan without Jon there, as then I may not have described her as the witch to friends on the phone later!  When she talked to me it felt as if she was almost disappointed that I hadn’t gone into labour & I felt like an inconvenience, getting in the way of her busy day by wanting a scan.  She performed the scan on a portable machine & at the end she turned to me & said that there were no waters around the baby & there was no prospect of baby surviving.  I was told that now was the time to consider terminating the pregnancy if I didn’t go into labour soon.  She started talking about the termination options, said she’d be back later, after I’d had the other scan to confirm her findings & we’d discuss my final decision then.  I know that doctors can’t get emotionally involved & I always want my doctors to be factual with me but she left me feeling as if she’d just punched me in the stomach.  I’m sure she never meant to be unsympathetic or abrupt, & during my pregnancy I met many wonderful obsetricians in that hospital who were factual whilst being sympathetic,  but she wasn’t one of them. I’d spent the last 48 hours listening to my babies heartbeat stay steady, calm & healthy whenever the midwives listened to baby & here I was, being told again that there was no hope and to consider termination options, sat alone in my room. I hate people seeing me cry.  I always have.  I’m a brave face person that likes to just get on with things. So I hid. I hid in the shower for 45 minutes & bawled my eyes out like a big girl. Very hollywood!

Jon arrived after an hour & we talked about what had been said in the morning. When we went downstairs for the scan with the sonographer we were both expecting the worst. The worst didn’t happen.  Whilst we were told that there was very little water around the baby, there was some in what seemed like pockets in areas around baby & some in baby’s stomach.  It was very difficult for her to measure baby because of the lack of water but she seemed to be a good size & was still moving.  My Amniotic Fluid Index (AFI) was worked out at around 4 which was more than in a lot of the stories I’d read about in the US.  I think what gave me the most hope at that scan was the sonographer herself.  She insisted we had a picture of baby, was positive & encouraging & even wished me luck with my future scans!

Later that afternoon the same consultant came back with a registrar & informed us that although the sonographer had seen some water there wasn’t enough. The talk turned to termination options again.  I mentioned the limited information I’d found online but she was dismissive & insistent that the risk to me of infection was far too high & that when I developed an infection they would have to intervene anyway.  We were told to talk about it & that the registrar would come back later to find out what we had decided to do. As soon as they left I was clear in my head that was no choice here.  I could hear a healthy heartbeat every time the midwives listened & despite being told 4 days prior that I would be in preterm labour within 48 hours, here I was, still pregnant, no infection & not in labour.  For me, termination just didn’t feel like an option. The registrar that came back to see us was lovely & empathetic.  Jon & I had decided that we would keep going until the 20 week scan where it would be clear if the baby was still growing, if anymore water had accumulated or if I’d lost all of my waters.  She was sympathetic & understanding. It was decided that they would continue to monitor me for now & if I was still ‘infection free’ on Saturday I would be allowed to go home & just come back to the hospital twice a week for blood tests & observation. Fingers & legs crossed!!

My little Daffodil

So the past couple of days have been quite busy, with weaning in full swing & Daddy being home.  On Sunday Gwendolyn had her first roast lamb dinner ‘a la puree’, although I think she was somewhat distracted by having a grown up meal at the table with Mummy & Daddy being joined by her ‘Pops’ (Grandpa) & Uncle Matthew. We did make sure that she was suitably dressed up for the day & she made quite a cute daffodil!  Monday we took advantage of Daddy being home to have a little family day out to Cotswold Wildlife Park.  I was definitely glad to not be one of the mums who was having to explain that some of the animals were ‘cuddling’ each other because it was cold…

I forget a lot of the time about the Gwendolyn being on oxygen & it’s only really when you’re sat in a big cafe full of different people that keep looking over at you, watching you feed your little girl pureed sweet potato, that you remember that it’s not the norm. I know people don’t stare out of malice but it definitely takes some getting used to! Maybe I should get a sign made up explaining what’s wrong with her.  Some people do make me laugh though.  I had one lovely old dear come up to me last week & ask “what are there tubes in her nose dear?”.  I didn’t laugh. Much!

IMG_5247

No Hope

When we arrived at the Maternity Assessment Unit at the JR we were quickly taken into one of the delivery rooms for a once over.  At that point I wasn’t that worried. Bangor hospital had said there was still water around the baby & my infection markers were barely up in my blood test. The midwife came into the room & confirmed that my obs were all normal & she got a perfectly normal heartbeat reading from the baby.  Then the doctor came in & examined me. She waited until I was dressed & the midwife was back in the room before she turned to face Jon & I.  The look on her face said it all.  From what she could see my cervix was open.  My waters had definitely gone.  I would start going into labour in the next 24-48 hours.  I was losing my baby. There was nothing they could do. She was really, really sorry.

If anyone can be lovely when they give you news like that, she was. I just started crying quietly.  I didn’t know what to say.  All the hope I’d had 30 minutes ago that everything wasn’t as bad as we’d thought the day before was gone.  They went to go & sort out a room for me to be admitted into, leaving Jon & I alone together.  We couldn’t do anything but stand there crying.

For future note – the worst possible room you can be in when you’re told you’re going to lose your baby is a delivery room.  With a ‘how to put baby to sleep’ poster on the wall, birthing balls & couch.  Seriously the worst place to be.

One of the senior midwives came back to take us upstairs.  She was so gentle & kind in her manner  & took us up to level 7 in the service elevator so we didn’t have to face all the people with babies outside.  Jon had to leave as the dogs were still in the car & I needed overnight clothes.  I had my own room so just sat on the bed, not knowing what to do.  I couldn’t even bring myself to phone the my closest friends in the world as I knew talking about it out loud would push me over the edge.  Looking back I felt so guilty as all I could bring myself to do was send this:

“I’m sorry chick. I can’t really talk on the phone at the moment. It’s not good news. My waters have definitely gone. There isnt really any hope left now as there’s nothing to protect me & baby from infection. I’ve been admitted to level 7 & Jon’s on his way back with the dogs. Xx”

That night on my own was horrible.  The midwives were amazing & as positive as they could be with every check they did.  My observations were always normal & baby’s heartbeat was always perfect.  I’m normally completely against ‘googling’ medical conditions but no one seemed to have much information on EPPROM or PPROM which is what they were saying had happened. By 5am the next morning I just wanted someone to come in & give me a solution.  A plan. Anything.

“This is horrible. I feel like my heart is breaking & I can’t do anything to help baby except lie here in a hospital bed & hope for a miracle. I don’t know what to do. Xx”