Katy: Happy 1st Birthday

A message to our boys on their first birthday...

Dear Matthew and Oliver,

Today you would have turned 1. If you were here, I'm sure that we would have had a really fun day with all your family. I would have made you each a cake (as soon as we found out that there were 2 of you we had decided that you shouldn't have to share a birthday cake!) We would have also had a little party and you would have had loads of pressies. I often wonder what you would be like now, what we would have brought you for your birthday, what you would be doing and little things like what colour your eyes would be.

But you aren't here, because you will always be 6 days old. However, that doesn't mean that we can't still have a special day for you. Me, Daddy and your Sisters are going to go in to town and see your special butterfly on the wall at the museum. After that we are going to plant a lovely tree we have brought for the garden. It is a Japanese Maple and the leaves go bright red every autumn. This means that it will look fabulous on your birthday every year. It also has a colourful sign so that everyone can see that it is in memory of two special boys.

We have also got a little present for your sisters. It is a book all about you so that they can grow up knowing all about their big brothers. They are a bit too small to understand it at the moment but I'm sure that they will love it when they are a bit bigger.

Me and your Dad still miss you both terribly and Emily and Sophie, your little sisters, would have loved to have met you. But we will try and make your birthday as happy as we can, a wonderful celebration of the two of you!

You can read more about Katy and her journey in her own blog 1 in 10 Thousand

Katy: Is it your first? When are you due? I'd love to have twins!

One of our guest posters, Katy, has recently started her own blog to share her twin boys' story and also her journey in her rainbow pregnancy, where she has again been blessed with twins. You can read more about Katy at her new blog 1 in 10 Thousand.

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I wanted to write about something that I find really hard especially on two occasions recently.

My pregnancy has been pretty obvious to all from quite early on (as you can probably imagine, being pregnant with twins twice in a year does nothing for your abs/figure!) So, in the past month I've been looking pregnant enough for people that I don't really know to start commenting and asking questions... innocent enough.. but sometimes hard to answer.

Is "it" your first?

I know many bereaved mothers who are pregnant again find this one hard, in fact I nicked my stock response from a friend from university whose baby boy was stillborn. I usually say "We lost our first twins, but we are really hopeful about these ones." I cannot ever bring myself to say "yes they are" because I feel like I always have to honour Oliver and Matthew's existence... They are my boys and I'll always be proud of them! People tend to react in one of three ways - all of which are totally fine: Mumble and not ask anything else, share with you their own/ their friends'/parents' stories of loss/fertility issues or (my favourite!) just say something along the lines of "I'm really sorry, I wish you all the best!"

When are they due?

For me that is the million dollar question. Matthew and  Oliver were born in October and due in January! Technically these 2 are due in October but will be induced by mid-September if I get that far. Usually I say "Oh late summer early Autumn." I feel that should cover it hopefully!

I'd love to have twins!

Tricky one. It is an amazing gift to have twins, it is wonderful to see two little ones kicking each other on a scan. Seeing your 2 babies and how alike (or not) they are to each other is fascinating but twins are risky! A not very helpful consultant (not mine, mine is lovely!) said to someone I know "The womb is not built for 2." Very true but when 2 have ended up in there naturally there isn't much you can do about it! The risk of stillbirth is 3 times higher in multiple pregnancies than single ones.. the risk of complications much higher. Having twins is wonderful, but it is also scary!

Recently, these questions have come up twice in different situations.

Firstly, we went to a friend's wedding. It was great and we had a fab time but plenty of people there didn't really know us so there were lots of the normal pregnancy type questions. Someone said "Twins, eh, that will change your life!" "In ways you can't even start to imagine," I thought.

We also started our twins antenatal classes. This was a a tricky one because everyone introduced themselves and mentioned other children they had or if their twins were their first pregnancy or they had had IVF etc. When it got to me I had to mention Oliver and Matthew. I felt a bit guilty. I didn't really want to freak out a big bunch of couples expecting twins. But they are our sons, I gave birth to them and I feel that they are too big a part of our lives to be missed out. Also, if nothing else, our story lets people expecting twins know to listen to their bodies and be hyper vigilant! Fortunately, I think it was received well. I had spoken to the midwife who runs it at the start and she thought I was very brave. Clearly she couldn't see the sweat on my brow!

Sarah: The Story of Our Premature Twins

Our story begins on the 20th July 2012. I was 28 weeks pregnant with my twin girls. I had been getting regular pains all day at work (my last day!), but they were not too bad, so assumed that they were Braxton Hicks. In the evening these pains got worse, so I decided to call the labour ward, who advised us to come in to be checked. I had not yet packed my hospital bag, so was madly trying to chuck what I thought I might need in a bag just in case (it was my plan to pack my hospital bag that weekend ironically!). We got to the labour ward and were shown almost straight away into a room. I was connected up to the fetal heart rate monitor where we could hear two healthy heart beats.

I was then examined by one of the midwives, who, to my surprise told us that I was in fact 3cms dilated, with waters that were just about to burst, and the chances were that my girls would be arriving in the not too distant future. I was then put on a drip to slow down contractions and given the first of 2 steroid injections (to help strengthen babies lungs).

At this point it was quite late, so my husband decided to go home for a rest. I continued to have contractions every 5-10 minutes throughout the night, using gas and air as my pain relief. I was then given a second steroid injection twelve hours after the first. Laurie Gatehouse came down from the Neonatal Unit and talked us through what was likely to happen when my twins were born. We were told that I would need a caesarean section due to twin one (Grace) being breech.

At around 4pm on Saturday 21st July, my contractions seemed to get more intense and painful. I was examined and found to be 10cm dilated. Everything then happened in a bit of a blur, I remember Drs and midwives prepping me for surgery. It was very rushed and rather scary! But necessary due to the fact that I was getting the urge to push, which with a breech baby could cause a lot of problems!

After being given a spinal block, twin one (Grace) was born at 18:06 and twin two (Isla) was born at 18:11 using forceps, as she was stuck high up under my ribs! I was told that my early labour had possibly been caused by Isla’s placenta being infected, so the surgeons spent a long time cleaning me up, and all three of us were then given strong antibiotics.

When they were born, Grace needed to be fully resuscitated (scary!) but Isla was managing to breathe by herself. They were both stabilised in the operating theatre, by two teams (one for each baby) of Drs and Neo natal nurses. Once stable, we got a quick glimpse of them, as they were wheeled past us to make their way to the Neonatal unit. We were then told that the nurses would contact us as soon as the girls were settled. This took a few hours, but eventually my husband was allowed to go and visit our daughters (I was bed bound due to the Caesarean, and pretty dosed up on painkillers). My husband returned with a photo of the girls taken by the nurses.

Grace

Isla

I finally got to meet my babies the next morning, but wasn’t able to hold them until they were 5 days old.

The girls settled really well, and I got down to trying to produce some colostrum for them. After much boob squeezing from both my husband and I, I started to produce colostrum. The process of collecting this was very time consuming! I would be squeezing it out, while my husband sucked it up with a 1ml syringe and then took it down to the neonatal unit for the nurses to share between the girls. After 3 days the real milk came in and I was an emotional hormonal wreck! I just sat on my bed and cried, and when asked what was wrong, I replied “I don’t know!” I was told this is perfectly normal.

After a week or so, the girls were doing really well and were really stable, so they were transferred from the “hot room” (more intensive care) into the nursery. They continued to do well for the next week, both were on optiflow, which uses water vapours to push oxygen into their nasal prongs, making it easier to breathe. Unfortunately they both developed a chest infection, so were put on antibiotics to treat them. Little did we know, things were about to get a lot worse very quickly.

On the evening of the 1st of August, we received a phone call to say that Isla was not doing so well, and had been moved back into the hot room so that she could have a closer eye kept on her. We went in to see her, she looked asleep and settled so we weren’t too worried, so we went home to bed. We then received another phone call to tell us that she had had to go back onto the C-pap , which maintains continuous positive airway pressure in the lungs. We were told to rest, and they would contact us if there were any changes. We then received a phone call at 6am on 2nd August, telling us that Isla was now on a ventilator, and would need to be transferred to a different hospital as they suspected she had Necrotising Enterocolitis (NEC) and may need surgery.

NEC is a gastrointestinal disease which typically affects premature babies. The disease creates both an infection and inflammation in the bowels. The treatment ranges from stopping milk feeds and giving antibiotics, to surgery to remove the infected gut. Unfortunately Isla had an extremely severe form of NEC.

We waited all day to find out where Isla would be transferred to (we were told it could be Oxford JR, Great Ormond Street or Addenbrookes). Finally at around 6pm on the 2nd August, Addenbrooks contacted MKGH to inform them they had a bed for Isla. A transport team were then dispatched from Oxford (where they are based) and they made their way to MK to stabilise Isla for her journey. This took quite a while as they wanted to get a long line in, to make it easier to administer drugs during the journey.

Isla waiting for a bed in another hospital

Isla being transported in a very high tech transport incubator!

We then had to make the decision to leave Grace in MK (still suffering from a chest infection but otherwise stable) and make our way to be with our critically ill daughter in Addenbrookes. When we arrived, the surgeon spoke to us straight away, and told us that she would most likely need surgery to remove the infected parts of her gut. We were told that if they could, they would wait until morning, but if necessary they would have to operate overnight. We were then given a room just down the corridor for the night, where we tried to get some sleep (note the word tried!!) we did not receive any knocks on the door throughout the night, which was a relief!

When we got up in the morning we were informed that Isla would be going down to surgery, and that they were waiting for blood and platelets for her. She was then taken down to theatre, where they operated on her for around 3 hours (it felt like a lifetime!). When she returned, the surgeon informed us that he had had to remove a lot of damaged gut, and what he had left in there did not look great, but if he had removed any more she would have been left with short gut syndrome. We were told that our daughter was extremely sick and the next 48 hours were crucial. We got through the first 24 hours and were told that Isla’s kidneys were not working, which meant there was no urine output and she was swelling up due to fluid retention. It was then suggested that we have a naming ceremony for her, so the nurses contacted the hospital chaplain who performed a wonderful ceremony with all our family around her incubator (except for Grace of course who was doing well back in MK).

After a few days, we finally started getting wet nappies (we were so relieved we even took a photo!). Isla seemed to improve gradually, but seemed to be blocking her ventilator quite a lot. It turned out that this was because she was having fits, and now had a bleed on her brain. We were told that there was no way of telling how much damage this bleed would cause, but there would certainly be some kind of mobility problem for her down one side, due to where the bleed was.

We continued to hope and pray that she would keep fighting and would pull through. Finally on the morning of Thursday 9th August we had a knock on our bedroom door to tell us to come quick. Isla had blocked her ventilator and was being resuscitated. This was successful and she was then made stable again, until a couple of hours later when she did the same thing again. Her consultant looked at us and told us that this would probably keep happening and it was now up to us to decide if we wanted to withdraw her life support. We looked at each other and we knew that this was the end of her fight. We made the decision to turn off her ventilator after one last cuddle with both of us. Isla was disconnected from all her machines (apart from one drip containing morphine to keep her comfortable) and she sadly passed away in our arms, aged 19 days old. Although heart breaking, we felt a strange sense of relief, knowing that our baby was no longer suffering and in pain. Isla’s consultant informed us that her blocking her ventilator was her way of telling us she had had enough.

We had our last cuddles with our daughter and I carried her down to the morgue. We then packed up all our things and made our way back to MKGH where the wonderful nurses had screened off an area by Grace’s incubator for us to have some privacy and to be able to grieve for our daughter. It was very emotional, but seeing Grace helped to keep us strong and realise we had to keep on going for her.

During our week away with Isla, Grace had come on in leaps and bounds and was now wearing clothes and making her first noises!

Grace wearing her first item of clothing!

Grace continued to get stronger and we found that visiting her was really helping with our grief for her sister.

She started to make sucking actions, so I started to put her to the breast while being fed through her NG tube sometimes, so she would associate this with feeling full and eventually latch on. She started to show an interest in the breast but struggled to latch on due to her mouth still being so tiny. I decided to try nipple shields, which were a hit, and on the last day of August, Grace finally had her first feed from me (a lovely end to a terrible month).

Grace was then having 3 hourly feeds, every other feed she was put to the breast so as not to wear her out too much. When I was not there during the night, she was offered either a cup or a bottle of expressed milk. When Grace was successfully taking every other feed either from breast or bottle, she was then moved onto 4 hourly feeds, of which every feed would be breast or bottle with an NG top up if needed. She took a week or so to get used to having to work for her food, but something finally clicked, and we started to hear talk of going home! As Grace was still on oxygen, she was connected up to a downloadable sats monitor, which the community nurses (the nurses that visit when you are at home if you are on home oxygen) assessed and decided how much oxygen she would need to come home with. The oxygen was ordered and delivered the next day and on the weekend of 22nd September we stayed at the hospital for two nights (to get us used to having a baby to get up to in the night and have the support from the nurses if we needed it).

Finally, after a 64 day stay in NNU, Grace came home on Monday 24th September. Two weeks before the twins due date.

Bringing one baby home when you are expecting to bring home two was hard emotionally, but knowing that Grace is getting that much stronger every day has kept us going, and although I still re-live the week we lost Isla and I still cry for her, I know that Grace needs her mummy and daddy to be strong for her. We will celebrate Isla’s life every year on the day that we lost her and we will bring Grace up knowing that she is a twin, and if she ever wants to know, we will tell her the story of how her sister fought so so hard for her life.

Here is Grace aged 15 weeks (3 weeks corrected age) still thriving and getting bigger and stronger by the day.

Katy: Two Little Boys - Oliver & Matthew's Story

I met my husband Chris at salsa classes 5 years ago. We got married in April 2011 and decided we were going to spend the rest of the year doing things we really wanted to do before we had a baby! We went on an all out luxury honeymoon to the Far East, travelled around India by train, moved house and upgraded our totally battered old car. When Christmas came we felt we were ready to try and start our own little family. I was just starting to worry after our 5^th cycle of trying to conceive when shortly after our first wedding anniversary I got the elusive BFP - we were thrilled and so excited.

At the end of July came our first BIG surprise. I was massively worried about the 12 week scan as my close friend had had a missed miscarriage. So, when the sonographer said “Ahhh OK,” I convinced myself something was up until she turned round the screen and said “Well there's your baby..and there's the other one!” TWINS! We were totally shocked but really pleased. I was 29, Hubbie 32 ,no history of twins in either family, no fertility treatment, all in all no risk factors for twins. We told all our family the news that weekend. Everyone was ecstatic. A week later we saw the consultant who reassured us that they were DCDA twins (the lowest risk type).

My pregnancy was pretty text book and our 20 week scan showed 2 perfectly formed babies kicking each other! The only real problem I had was that I got very huge, very quickly, I'm naturally quite skinny so it really showed. I started to struggle with back pain and had to go for phsyio (off a gorgeous Irish guy unfortunately!) By 24 weeks I measured 35 and had put on 2 ½ stone, more or less only on my bump.

Therefore I didn't worry too much when after a busy day pram shopping at 24 weeks I started to get a crampy pain in my back. It wasn't dreadful but it was nagging and on Monday morning I rang maternity assessment to get it checked out as I had a busy day at work. They said that all sounded fine, that I wasn't leaking fluid or bleeding and the babies were still moving but If I wanted to come in for reassurance then I could. So I did feeling like a paranoid first time mother! Once there all looked fine, the midwives were all ready to send me home or rather back to work for an afternoon of teaching 8 year olds PE (!) but as a matter of procedure a Dr came in to check me out. This was then I was found to be 3cm dilated... then everything went crazy.

The hospital I was booked in to had Special Care but now NICU so I was put in an ambulance (blue lights sirens the whole lot) to go to the nearest place with 2 NICU cots that was about 40 miles away. I still felt O.K, everyone had told me labour was really painful, this couldn't possible be it, I was given drugs to stop the contractions with a view to having a rescue cervical stitch put in but they didn't work (I have since found out from my parents who are both Drs that these drugs have a very low success rate).

After a scarily short labour (with 15 medics in the room not what I had ever imagined!) Oliver Thomas (1lb8oz) and his younger brother Matthew Daniel (1lb9oz) arrived in to this world kicking and screaming, surprisingly loudly, at 8:55 and 9:16pm- They were perfect, I instantly fell in love with them and I glanced across the room to see them being taken over to the NICU.

I visited them twice that night, they were bigger than I thought they'd be and over the next few days they remained stable. I spent almost all day and night going from incubator to incubator. Their odds of survival were never great at around 25% but they made small amounts of progress. They were able to be feed  on my breast milk through a tube, have little cuddles in their incubators and hold our fingers. Their brain scans and blood tests all came back clear. They each had their own little personalities. Matthew was more chilled and Oliver a lot more boisterous!  The staff there were all amazing. My father in law used to be a neonatal- paediatrician and was so impressed by the standard of care which was really reassuring.

On day 5, Matthew took a sudden turn for the worse, his tummy swelled and he lost his colour, he was diagnosed with necrotising enterocolitis (a disease of the bowel common and often deadly in premmie babies) He was immediately put on high strength antibiotics and the head consultant rushed in from home. Despite the best attempts of the medical team he was taken off his ventilator in the early hours. We held him as he passed away and told him how much we loved him. He looked so peaceful as we gave him a wash, dressed him in some new clothes and tucked him up in a Moses basket.

The next morning and Oliver was still doing O.K but the staff were slightly worried as his temperature was varying slightly, as a precaution he was started on antibiotics and transferred to another hospital where they can operate on tiny babies with NEC. Sadly he got worse very quickly and that evening they had to operate. 

We followed his incubator down to the theatre where we told him what was happening and he squeezed my finger- It was as if he already knew. We waited for the longest hour of my life until the surgeon came out and said he had tried his best but that it wasn't enough.

Less than 24 hours after we said goodbye to his brother we said good bye to Oliver and gave him the same respectful death as we gave Matthew. Then all his grandparents came in and gave him a goodbye cuddle. Without his wires in he looked just like his Daddy.

I wanted to tell my boys story for a few reasons-

Firstly to highlight the risks of multiple pregnancy. So far they think they were premature just because they were twins. That I was carrying around the same amount of extra weight as a woman at term, that my body was tricked in to thinking it was time they were out and my cervix gave way. They were perfectly formed and big for dates. I'm fit and healthy and had no sign of any medical condition. If you are, or know someone who is carrying more than one.. make sure that you listen to your body extra carefully.

 I also wanted to say how hard it is being a mum of multiples on a neonatal unit. I still wonder if I spent the same amount of time at each incubator, did I hold them the same amount of times? It was very hard after Matthew had died walking past the incubator he had been in to see Oliver and stay strong for him. As well as the guilt of feeling that I have let them and everyone around me down I also have the guilt this brings with it.

But most of all I wanted to tell the story of my gorgeous sons and how, even for just a short week, they brightened my life and the lives of all those around them.  

Sleep tight my handsome chaps!