One Year Ago Today: Pre Birth Trauma

My Scar Now

One year ago today. Saturday 10th July 2010. I was 25 weeks and 3 days pregnant. With twins. David had invited his Dad round to help us start preparing the house for the arrival of our babies in 15 weeks … Continue reading 

Blog Gems – Breastfeeding Premature Twins

Tandem Twin Feeds!

In January 2010 my fiancé, David, and I started our fifth cycle of ICSI in the hope of getting pregnant and having a baby of our own. We were starting to wonder if IVF was ever going to work for … Continue reading 

Thank You William Harvey! You Saved Our Lives!

2nd January 2010

Name someone who deserves more credit than they get. And for bonus points, how to change things so they get more

This is an easy one!  The staff at William Harvey Hospital in Ashford, Kent.  Particularly a midwife named Fiona and the whole NICU/SCBU team, each and everyone of them provide care above and beyond their call of duty.  And I thank them all from the bottom of my heart.

On the 10th July 2010 I was rushed into the William Harvey Hospital.  I was almost 26 weeks pregnant and feared the worst.  I was losing my babies.  We were taken straight to the Labour Ward where it was discovered very quickly that actually the babies were fine, the problem was with me.  I was given steroid injections to mature the babies’ lungs just in case I did go into labour, but that wasn’t to be.  Not yet.  It took 2 days of agonising pain and absolute fear for my fiance before I was operated on for a twisted bowel.  Before this stage he was sure that we were going to lose the babies and there were times when we thought that I might die.  I wanted to die rather than have anything happen to our babies.

The surgeon miraculously cut me from just below my chest bone to just below my belly button without disturbing the twins.  It took me 10 long days in hospital  and a blood transfusion to begin to recover from the op.  I was nil by mouth and then had to drink yoghurt drinks before being reintroduced to solids.  My whole body was swollen from pregnancy and water retention.  I was on oxygen and in and out of consciousness.  I was a mess!  I stayed two days in ITU before being kept on the labour ward for 8 days where my care was overseen by Fiona.  She was amazing, really looking after not only me but my fiance too.  Everyone who cared for us was wonderful and steered us through a very rough sea.  After 12 long days I was allowed to go home.  Everyone wished us well and said they would see us again in 13 weeks for the babies to be born.  72 hours later we were back and this time I was in preterm labour and I was terrified.  Once again Fiona was there, this time to welcome our children in to the world.  It was so fitting that she should be there to welcome Esther and William.

I went home from hospital just hours after the birth but at 27 weeks gestation it was without my babies.  For 59 long days and nights they were cared for by the fabulous doctors and nurses in NICU/SCBU.  This expert team cared for our babies and also looked after me as I adjusted to life as not just a mum, but a mum of twins and extremely premature twins at that.  You can read about them in this blog and understand what a fabulous job they do for very little recognition or thanks.

Thank you to everyone at William Harvey Hospital, Ashford, Kent.  Thank you for helping my family get such a fantastic start and for supporting us, giving the babies time to grow bigger and stronger before we brought them home.  Thank you x

RSV Updated for 2011

Lung Chart

10.11.11 So many babies I know are affected by RSV at the moment. Some are having to use inhalers, some need home oxygen support and others have been admitted to hospital and in severe cases ventilated. Please take a moment … Continue reading 

Lo Flo!

25.8.2010

From 9am – 11am this morning has been very busy, though still no sign of the doctors.  David and I arrived to find Esther and William in the same incubator again, just for a short while as Esther was getting a new house.  At 9.30ish she was moved back and I did William’s cares.  He wee-ed all over his bed so I changed his bedding and his clothes too!

At 10am William came off CPAP and instead of oxygen in his incubator he now has Lo Flo oxygen which goes through a tube in his nose.  He started on 0.05 of a litre and is now on 0.02.  He has not had a desaturation for one hour and twenty five minutes!

Esther also has Lo Flo but her oxygen requirement is higher and she still has regular desats.

Esther’s weight stayed the same overnight and William gained 46g and is back up to 1690g.

Dr Long is doing a proper round tomorrow, for today we are trusting Jane’s decisions. 

William is now on 25mls of milk every 2 hours and Esther is on 20 mls 2 hourly.  Esther will try for 8 hours off CPAP and 4 hours on.  William is trying all day off and 6-8 hours on over night.  They are both now having nasal cannula oxygen instead of ambient whilst they are off.  This means that they can come out for cuddles at any time and also can spend some time together in the same incubator.  We are making slow progress in the right direction. 

Came back from lunch to find both babies quiet and stable.  William’s oxygen saturation was 100%.  Esther was having some desats but they seemed to be fleeting.  So far so good.  All there is for me to do is watch and wait. 

The temperature in both their incubators is down to 29 degrees.  Jane is getting them ready for the big wide world, or an open cot at least!

I am getting very slack with my milk.  Today I did it at 7.30am and 12pm so far, that is a gap of 4 and a half hours, I need to get down to gaps of no more than 3 hours. My schedule should be

6.30am, 10am, 1pm, 4pm, 7pm, 10pm and 2am

But it never is, life just seems to get in the way!  Doctors and cuddles are the main routine busting events!

Jane has just explained that all being well William will stay off CPAP until 11pm tonight and then go on until 5am when he will come off again.  At the moment his nasal oxygen is set at 0.01.  Esther is set at 0.08 and and there is a larger meter on stand by for her in case she needs much more.  They both, at the moment, seem settled and stable.  Touch wood!

Have arranged with Jane to have the babies out for cuddles after lunch.  We are both going to lunch from 1pm- 2pm.  I am going to cuddle both babies from just after 2pm to 4.30pm.  Then I will do milk and then have story time with each before going home when David gets here.  Hopefully the IKEA delivery will have arrived.

First Cuddle with both Twins 15th August 2010

After lunch had a lovely cuddle for about an hour with both babies.  I then changed both their nappies and settled them down. 

While I was doing cares Jane took swabs for MRSA.  Now I know that they do this routinely but today the swabs were labelled NICU Screen and all the babies were done at once.  I have a feeling that either the swab was not testing for MRSA or that MRSA is the infection on the ward!!I have no idea as no one is allowed to tell us anything. But, the swabs were taken straight after a meeting to discuss the infection.  We get the results in 2 days!

After cares I had a quick cup of tea and did milk. 

When I came back William and Esther were both fast asleep.  They seemed stable with very fleeting desats.  This was in spite of their oxygen prongs often being nowhere near their nose!  I read both babies ‘I Love You Sleepyhead’.

By 5pm I realised that William’s Lo Flo was on 0.  No oxygen!  And he seems really quite stable.  Esther’s is on 0.12 which roughly equates to 26/27%, which is the level of ambient oxygen she needed for much of the time.  And again she seems quite stable.  I think that in an ideal world they should be keeping their respiratory rate below 70 and they are managing that much of the time.  We will see how tired they become.  They have both taken big steps forward today, I hope that those steps will not have consequences!

Just waiting for David now.  I am ready to go home.  Milk plan for tonight is 7pm and 10pm, 2am and 6.30am.  I am so tired but need to maximise milk supply in readiness for breastfeeding.  Esther and William are 32 weeks today.  It can’t be long now!

I am getting much more confident in the unit.  I am not afraid to ask questions, I chat to the staff and some of the other parents, and grandparents.  Today I also told someone that they should not have their mobile phone on in the ward!  Perhaps having some time out over the next few days will do me good, though I will miss the little ones like crazy!  I will be doing things that are for them.  Things that have to be done before they come home. 

I was restless by the end of today and just wanted to go home.  I feel like I am a terrible person for saying it but I just feel for the first time that I need some time away.  I think it is because of the stressful atmosphere in this room now it is full of incubators and buzzers like NICU.  And with not knowing what is going on with the infection. 

I have told Jane my plans for the next few days and attached a schedule of my comings and goings to the babies’ notes, hopefully that will avoid any confusion.

Think this week also tough as had hardly any visits with Clare and Michele both away.

Hurry home ladies!

Chronic Lung Disease

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Dr Long saw the twins this morning. William first. Everything is to stay the same with William. He is now classed as having ‘Chronic Lung Disease’ (CLD). This is because he still requires oxygen support at one month old.

http://www.lpch.org/DiseaseHealthInfo/HealthLibrary/respire/cld.html

Dr Long says not to be surprised if he is still needing oxygen at 36 weeks, and could even go home with oxygen support. Continue reading 

Rest in Peace Baby Maya x

13.8.2010

Friday the 13th!

Maya is not here anymore.  Rest in peace little one.  I feel so sorry for her parents and so so thankful for our two.  May they continue to grow big and strong.  Please!?!

Esther and William seem fine this morning.  A few desats but mostly self correcting.  They have a lovely nurse called Louise who we met when William first came into the nursery.  We watched her weigh Esther, who has lost 25 grams.  She now weighs 1155 grams.  Our babies do not come out on to the scales to be weighed, there are scales built into the incubator!  Very clever. 

David changed Esther’s nappy and cleaned her mouth this morning before he went home to do some work.  She was just all clean when she decided to make herself dirty again!

The doctors came round about 10am.  It was a different doctor who basically said just to carry on the same.  The next step would be trying to breast / cup feed.  I laughed when he said this, saying about their mouths being so small.  No one laughed with me!  While the doctors finished their round I went to have a snack and do milk.  When I go back I am going to ask Louise about the steps in the breastfeeding process.

I will also have to do William’s care.  Esther’s next care will be due at 3pm and William at 4pm, unless of course the two of them decide otherwise!  Mucky pups!

Both babies are having two hours off CPAP today though they may try William for more, depending on his blood gas result.  Poor Esther’s nose looks very sore today so I am glad that she will be getting a good rest.  Both babies are coming off together at 2pm.

Had some lovely chats with Louise today.  She said that I can do mouth care with expressed breast milk – EBM.  You place the milk laden stick in the centre of the bottom lip until the baby’s tongue comes out to meet it.  Then use a scooping action from the centre to each side to clean the mouth with milk instead of water.  I can also put a milky stick in their mouth when the babies are tube feeding so that they can start to associate feeling full with the taste of milk in their mouth.

Both babies have been alarming a lot this morning with high heart rates and low oxygen levels.  I comfort held them, talked to them and sung to them, all of which worked for a short while but then they would start again.  Esther was particularly unhappy and forgot to breathe 3 times in short succession.  I know that they will grow out of this but in the mean time it is just awful, flitting from alarm to alarm, worrying about who will do what next.  It cannot be good for a lady’s nerves!

Louise also told me today that on the Thursday or Friday of the week beginning 23rd August the twins’ will have their first eye examination by an opthamologist.  He will be looking for any damage to their retinas and something called Retinopathy of Prematurity.  Any damage can be corrected with laser treatment if found early enough. 

http://www.patient.co.uk/doctor/Retinopathy-of-Prematurity-(Retrolental-Fibroplasia).htm

After this first eye exam the optometrist will come to see them every week or two weeks until they go home.  Louise gave us some print outs about the eye exam and what they are looking for.  She also gave us some information about the development of preterm babies from 28 – 33 weeks.

At 12.00 Granny and Grandpa Henley came to visit.  It was the first time they had seen the babies in over 2 weeks and they definitely noticed a difference, and particularly I think with William.  After their visit we all went to Pizza Express for lunch to catch up on the last 2 weeks.  We will see them again tomorrow after Si and Em have been to visit for the first time.

I got back to the hospital at 3pm and William and Esther were just coming off their CPAP.

We are now nearly at the 2 hour mark (off CPAP).  William is fine but is in 27% oxygen, Esther is hiccupping away in 26%.  They have both had some desaturations and William forgot to breathe one time!  Whilst they were off I read Esther the second Milly Molly Mandy story and William a tale for mothers and sons called ‘Snot Nose’!   They were both so peaceful after that, I just let them sleep.

Esther had a good gas at 5.15pm.  She went back on her CPAP and I put some milk in her mouth while she had a tube feed.  She seemed to really like it.  Louise gave me Esther’s CPAP hat as she got a new one today.  She is nearly ready for the next size up – but not quite!

William has gained weight and is now 1470 grams.  Our lovely big baby!  He had his gas done at 5.30pm and this was also good.  As his stats were steady too Louise let him have a bit longer off.

Meanwhile, Esther, who was back on her CPAP, had managed to pull her prongs out of her nose in protest, as if to say, “I’ve done 2 hours, let me do more!”  Bless her!  She was only on 24% oxygen and her levels were alarming high.  She is getting stronger.  Slowly, slowly, day by day!

Not sure about having cuddles today as William will still be off CPAP when David arrives.  Maybe we will let them rest today and have them out for longer cuddles tomorrow.  See what Daddy thinks when he arrives!

Moving Day!

11.8.2010

A mixed start this morning!

Jane has William today and Tracy has Esther (two nurses that we know and like) so should be a good day!  The staff really can make or break your day!

Jane made us aware that if they need space in NICU over the next couple of days William will need to be moved to Nursery 2 – the high dependency ward.  This is positive, it means that he is well enough to make the move but does also mean that our babies will be on separate wards as Esther is not well enough to move.  So our time then will become split between NICU, Nursery 2 and being useful at home!

Today William’s cares are due at 11am and 5pm.  He will try for 2 hours off CPAP at 3pm.  Esther’s cares are due at 12pm and 6pm.  She will hopefully have an hour off later today.  William’s CPAP is just air, Esther has 26% oxygen support.  Come on little Star!

The twins are 30 weeks today.  I would have been 30 weeks pregnant. still with 8 weeks to go!  I still don’t think I have got my head around this whole situation.  I am a Mum!

David and I are sat in the lounge waiting for the doctors as they do their round.  We are not allowed on the ward while they discuss other babies so wait patiently until the turn is ours, but often they forget to call us in and we are just left, left waiting!  We are getting very used to waiting.  Waiting and wondering, wondering what will be!

The doctors are pleased with William and Esther.  They will just carry on with their planned care. 

William was desaturating a lot this morning and could not settle.  I found that he had a very dirty nappy.  Once clean and dry he settled easily.  Love him!  William is so funny.  When the doctors and nurses see him he does not make a fuss but he does try to push them away or hides his face with his hands.  Wherever a stethoscope is placed he grabs on to it and tries to help with the examination.  It is very funny to watch.  He really is rather cute!  Jane thinks he will be a handful when we get him home as he is quite a stubborn, feisty little thing.  I love him even more for that!

There is talk of putting William’s feeds up some more if he loses weight again over night.  At the moment he is on 150ml per kilo, they may change that to 180ml per kilo – this is the feed ratio that Esther is already on.

After expressing at 11.30am Jane told me that William is moving today.  He is advancing to Nursery 2 but Esther has to stay behind for at least a couple of days.  I am so pleased for William but feel so bad for Esther, and for me, have to spread myself even thinner now!  Plan my time each day between two babies in separate rooms. 

Here is my plan for the rest of today:

1.00 – with Esther; 2.00 lunch and express milk; 3.00 – with William including cares; 5.00 – with Esther including cares

Who knows what I will be able to do tomorrow!?!

I asked Jane if the babies cares could be staggered so that I am able to care for both of them in their separate wards. 

Esther is definitely not well enough for the move though.  She was desaturating regularly on 27% oxygen.  The nurses tried to keep the levels up but she just could not do it.  It was very scary.  She had lost CPAP pressure and no one knew why.  Esther was getting very distressed and her heart rate was soaring.  They did manage to settle her just as William was moved.

I cried when I first went in to the other nursery.  William is so tiny compared to the other babies in there.  I also am worried that other parents will get cross with us beeping all the time.  Now that William has graduated things are going to be quite different!

After William’s move I had a very short cuddle with Esther whilst her incubator was changed.  It was lovely!  She really relaxed so her heart rate came down and her oxygen level was high.  It was wonderful to see. 

After the cuddle I checked that William was settled and then came to spend some time with Esther while she was off her CPAP.  It was the first time that I had seen her face for a few days.  Whilst off CPAP she was on 25% ambient oxygen and she was doing okay.

It is horrible only being able to see one baby at a time.  I guess it gives us something to do during the doctors’ round now, be in the other room with our other baby! Oh!  It is horrible!  I can’t imagine what it must be like to bring home one baby before the other?!?  Hopefully we won’t ever find out!

I read Esther some poems while she was off CPAP, some about school and some classical poetry too including The Listeners by Walter de la Mare and If by Rudyard Kipling.  I also found a wonderful poem that I liked for Julie’s wedding.  I will email it to her tonight as she should be home by now.

At 3pm David arrived because he had not been able to get through to me on the phone.  He also wanted to drive our new car!!!  The new car is lovely and plenty big enough for our family of four!  It also has a dog guard which David says we can keep for possible future use!

At 5pm Esther came out for a cuddle with her Dad, then at 6pm David got a cuddle with William too.  I went to do Esther’s cares before she was settled snug for the night.

The atmosphere in NICU was awful.  Poor Maya is battling.  All the doctors are trying to help her.  Her parents are just so worried and distraught with so many questions that they want and need answered.  I hope that Baby Maya will be okay.  I offered her parents to stay at our house should they need to as their own house is so far away.  Seeing them and all that they are going through makes me realise how lucky David and I are to have our Esther and William.

Sleep well Babies.  All babies everywhere, sleep well, grow big and strong x

Possible Infection!

9.8.2010

Arrived at the hospital just before 9am.  The doctors were intubating a new arrival on the ward so we were asked to wait in the lounge. 

David had to leave to look after Rohan before the doctors came round. 

I was able to change Esther’s nappy and oil her flaky skin.  She seemed to really enjoy having the oil massaged in and it stopped her desaturating.  She also liked holding my hand.

Tracy, today’s nurse, explained that Esther is tired.  She needs to be on CPAP continuously to help with her breathing.  Her oxygen support varies but she is currently on 27%.  She just needs time to rest and grow.  The doctors looked at her.  She is to stay on her CPAP with no time off and to continue on 8 mls of milk hourly.  The doctor has asked for a chest xray and for her bloods to be cultured to rule out infection.  The main thought is however that she was pushed too hard too fast and is now very tired.  They are also checking her HB (iron) levels to rule out anaemia.  Poor Esther but at least we will know one way or another.  She lost weight overnight.

William is doing well.  He has put on more weight and is now 3lb 1 and a half ozs.  Because of this his milk has gone up to 9ml every hour.  He will have one hour off CPAP today.  He did one and a half hours last night but was very tired.  The doctors are pleased with his progress but do not want to push him too hard.  He is on 22% oxygen.

After the doctors round Julie came with me to the milking room as otherwise we were going to run out of time together.  After milk we went to see the babies and then it really was time for Julie to go.  I told her through tears that I really wished she could stay.  I have loved having her here.  I love my wee sis very much and the twins will love their Aunty Julie, I’ll make sure that they do, even when she is far away in the land of Oz.

After Julie left I did William’s nappy and oiled his skin etc… He was so good and so stable.  After cares he came off his CPAP and we read poems and and sang hymns.  His incubator oxygen was set at 26% whilst he was off his CPAP.  He and Esther are both now having multi vitamins with their feeds. 

William really is a gorgeous baby.  I got some great photos today.  I love him SO much!

I went away for some lunch and came back to find William still off his CPAP.  He was approaching 2 hours and seemed to still be doing well.

Esther had her chest xray.  The doctor and Tracy talked me through it.  It seemed fine though there was a tiny white area that the doctor called ‘fluff’!  This could be the start of something but they need to see blood cultures first. If they show something out of the ordinary then Esther will start some antibiotics.  They have put a cannula in just in case.  Esther howled as the doctor put it in and Tracy gave her some sugary water to soothe her.  It seemed to help.  It really breaks my heart when she cries and to see the doctors sticking things in her and taking her blood.  They really struggled to get blood today.  They were trying to get it out of her hand.  Poor little Star!

After milk at 2.15pm I was able to have both William and Esther out for cuddles whilst on their CPAP.  It was lovely.  I was a bit hesitant but Tracy reassured me that cuddles are good for them aswell as me. 

One set of bloods came back for Esther that were taken very early this morning.  They showed no signs of infection but her Hb had dropped to 11.  It should be higher than 12.  Tracy thinks we are 2-3 days away from her first blood transfusion.  I think so too as I now recognise the signs – pale, struggling with breathing and agitiated easily.  I actually hope that she will have one soon as it seems to have done the world of good for William.  We have to wait now for the results of her afternoon blood tests to see if they indicate an infection or anaemia.

William will also have further blood tests this afternoon as he may need to go back under the blue lights for jaundice!  This is routine for their gestation and to be expected.  Poor Master William!

Just before 5pm the doctors came round again and explained that Esther has slight shadowing on the left side of her lung but this could just be the natural maturing of her lungs.  She is currently presenting no signs of infection, so for now we sit tight.  If anything out of the norm shows there will be no hesitation in starting antibiotics.  But for now, we wait!  I am going to have to get very good at waiting.  One of the other reasons that the doctor is happy to wait is that Esther has been back in air for much of today.  Such a rollercoaster!

Tracy wants me to go to my GP and get my operation scar looked at, so I will make an appointment tomorrow. Will also go for my postnatal check up on Folkestone Ward.

Esther’s blood test came back clear!  She is not showing any signs of infection.  We can breathe a sigh of relief … for now!

When we got home we measured and planned out the nursery and bought the remaining furniture we needed from IKEA.  Online thankfully!

Can’t wait to start getting the room sorted and then bring our babies home!