Category Archives: tube feeding

Graduation Day!

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This post was written back in August 2010 when our babies moved from NICU to SCBU. I want to share it again now as part of the Maternity Matters Meme. It tells of a very proud moment for me as a Mummy. This post shows the emotion I was feeling as I realised that no one knew my babies as well as I did, not even then, at that difficult time.

I am their Mummy and nothing in the world can change that. No matter what.

12.8.2010

Arrived at the hospital today to the most wonderful news.  Esther has graduated too!  Both babies are on the same ward and closer together than ever.  I am going to be allowed to have both babies out at the same time.  How exciting!

Esther had a stable night but her oxygen support is often over 30% on her CPAP, mostly because she always has her mouth open and so cannot keep the flow of oxygen sealed.  It goes into her nose and straight out of her mouth!  Such a lady!

Though we are now in the next room the babies’ conditions have not improved.  They are still desaturating often and forgetting to breathe, but they are small rather than sick and so no longer need such intensive levels of care.  I am very proud of them!

Reading back through this diary makes me realise how far we have come in a relatively short space of time.  Now I hope and pray that everyday our babies will grow stronger and live to enjoy a long, happy and healthy life.  I love them both so much!

Esther now weighs 1180g which is about 2lb 9oz.  She gained 79g over night.  William’s weight has stayed exactly the same, 3lb 3oz. 

I think this ward will be good for getting babies to sleep through household sounds … babies crying, radio on, nurses talking and laughing loudly, machines beeping … all of this and the babies sleep on!

Hopefully today will be able to have a cuddle with our little ones.  Fingers crossed!

Spoke to one if the NICU nurses today who reassured me about our move to High Dependency.  She says that this is definitely the right place for our babies but to expect to be in here for a long time.  We still have a long way to go!

I asked her how Maya is doing.  She is not really allowed to tell me but knowing that I talk to her Mum she said enough for me to know that the outlook is not good.  Poor baby Maya!  She has put up such a fight, her parents too!  I hope that there is something they can do to save her little life.

Dr Long came to see our twins.  He is happy with their progress and thinks that they both look healthy, active and well.  Esther now has a systolic murmur like William that has not been there before and she is rather pale.  William is not putting on weight and so his feeds have been increased to 10mls an hour and if he tolerates them will go up again tomorrow.  I am worried that his tolerance may be affected by the fact that I am on antibiotics!  Traces of the drug will cross through into my breast milk and could cause tummy upset in the babies!  We will see.

Dr Long has said to us as parents and to the staff that we need to be patient with Esther and William.  Wait for them to grow stronger and become less dependent on CPAP.

After the doctors I did William’s cares.  His nurse is one of the ones who likes rigid routine!  She said that I had to wait til 11 to change his nappy but once he had been disturbed by the doctors she allowed me to go ahead. 

I find it so frustrating that all the nurses work in such different ways.  One will say do what you think needs doing as and when appropriate, another will demand that you leave 6 hours between changes whether a nappy is dirty or not.  Very frustrating!

Esther’s nurse encouraged me to do her care as it needed doing so though her care was not due until 12 I did her nappy change before 11 because she was dirty and upset. 

After all the cares I came away to do milk.  I then sat quietly with the twins til 12.00 when I went for my lunch.  I have still not seen Maya’s parents today.  I do hope they are okay!

There are some very strange people on this ward.  I wish there was one other normal parent so that I might make a friend.  I feel quite lonely today.  I think it is to do with the nurses.  The visiting hours are also enforced more on this ward.  So anyone other than me, David, Mary and Tony must come between 4 and 7.

William dropped his heartrate to about 60 twice today.  This has been recorded.  Poor little William.  Three times!

Both William and Esther are on 23% oxygen now.  Going for lunch.

Came back from lunch to find William settled on 22% and Esther on 25.  I spoke to the nurses about a cuddle plan.  We have decided to wait for David and get them both out together at 5pm.  That will be very nice and is a step towards me having them out together on my own.

Had lunch with Maya’s parents.  They are so incredibly brave.  Maya is really very sick and is struggling to fight an infection.  Her parents want to give her more time.  I cannot begin to imagine what they must be going through, trying to do the best thing for their little girl, wanting to preserve her life without letting her struggle.  It must be so so hard.  Makes me feel guilty that ours are healthy and scared that something will go wrong. 

William has now dropped his heartrate 5 times that I have seen, the last time being as he had his first 10ml feed!

I spoke to Esther’s nurse about breastfeeding today.  She said that we will hopefully start at about 34 weeks.  She warned me that boys are often lazy when it comes to feeding and so it may well take William longer to establish feeding than Esther.  She also talked about getting into a routine.  I think that I will write a feeding plan that I can share with the nurses so that my wishes and ideas are taken into consideration too.

6 times!!! I am very worried about William’s bradycardia.  It seems to be becoming more regular. 

Esther is now going up to 9mls of milk an hour.  Very exciting!  Esther seemed to do well off her CPAP today.  She had 90 minutes off before her blood gas test.  I read her first Milly Molly Mandy story and then I sang some old hymns that I used to sing at primary school in Germany.  At St Barbara’s!  She liked it, the singing, so did the nurse and the other parent in the room!

From 2 – 4 in this nursery it is quiet time.  William decided to celebrate this by throwing up his first 10ml feed and then projectile pooing all over his newly clean bed after I had just changed a full nappy!  He is definitely making a name for himself in this new nursery.  The troublesome one!

And his sister is being impeccably well behaved and will have 2 hours off CPAP today as her gas was so good at the 90 minute point.  I am very proud of our little Star, she is trying so hard to catch back up with William.

Both babies had routine swabs today for MRSA, funny that also today David told me about a new hospital super bug that originated in India.  One more thing to worry about!

Put my bits in the steriliser just after 2.30pm ready to do milk.  Quiet time is not so quiet!  A very unhappy baby is crying but the good thing is that other babies just sleep through.  This is very encouraging for home!

When I get back from milk William should be off his CPAP.  I can’t wait to see his gorgeous little face!  We will observe the end of quiet time and then have some stories from David’s ‘Tales for Mothers and Sons’.  I am a mother and William is my son.  How amazing is that?

Esther did not manage two hours off CPAP.  She just got too tired and so the nurse put her back on.  Patience.  She will get stronger in time.  Love you little Star!  She is peaceful now and back on CPAP with 22% oxygen.

When the twins are breastfeeding – about 5/6 weeks from now – I want to be at the hospital 12 – 14 hours a day to do as much of the feeding myself as I can. 

Oh no!  William is having his oral gastric tube removed and replaced!  It seemed to be blocked after his vomiting.  At first I was panicked but then the nurse told me that the tubes are actually changed once a week. 

Whilst off CPAP William had a few instances of apnoea (not breathing!).  It is very scary because on the monitor it shows as a flat line!

There was a change of nurse at 3.30pm for Esther.  I was sad because Esther’s morning nurse had been excellent.  I don’t think that I am going to like this one so much!

Esther was very tachycardic today.  I was able to calm her down most times by singing, and often she would calm herself down.  I do hope that she and William grow out of all this like the doctors keep saying they will.  It could take another 4 weeks.  I am not sure my nerves can stand 4 more weeks of alarms!  But they will, because you do, that is just what has to be done!

Another breathing episode for William, 4.10pm, but he sorted himself out and his oxygen level did not drop.

At 4pm I asked Esther’s nurse if I could change her nappy because her heartrate was high and her oxygen low.  She told me to wait an hour.  After 20 minutes Esther was getting really stressed so I told the nurse I was going to do cares.  I did them and then Esther’s heartrate dropped to 155 and her oxygen went up to high 90s.  She was awake but calm, and so beautiful.  She didn’t need more oxygen or medical intervention, she needed to have her bottom changed.  Mummy knew best!  What a great feeling!  To know my daughter better than anyone else in all the world!  I love being a Mum!

When David came at 6pm we had both our babies out for cuddles at the same time, for the first time.  David held William and I held Esther.  They were both so settled and so peaceful, and so were we.  I wish we could have stayed like that all night.

Moving Day!

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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!

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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!

Aunty Julie

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8.8.2010

William, for the first time, is doing better than his sister.  He is needing less oxygen and is tolerating full feeds well.  His long line is out and his last cannula was taken out this morning.  He is still having caffeine and some sodium in his milk.  He will have an hour off CPAP today hopefully, to give his nose a rest. 

Esther is still struggling with her breathing.  She is desaturating to quite low levels and doing it quite a lot!  It is because she loses the seal on her CPAP by having her mouth open all the time.  The nurse today was brilliant, trying different things to improve the situation.  She tried different sized prongs and a mask.  The mask combined with a dummy has stopped Esther desaturating.  She is more relaxed, her heart rate is down and she is breathing easier.

William managed one hour off CPAP today.  He seems very relaxed and enjoyed having stories read to him by his Aunty Julie.  Hugh came to see the babies too today.  I am glad that he got to see them before they fly back to Oz.  I have really enjoyed having Julie here and will miss her very much.

Esther is still really struggling, even with her new mask.  Her desat levels were down in the 50s.  The nurse said that the best thing for her is to be left alone as she is obviously exhausted and needs to sleep to get better.  She will not be having any cuddles today.

I decided that the best place for me was home so that both babies could have complete peace and rest to get stronger and grow.

Phoned the hospital at 5.30pm and 10.30pm.  Both babies are doing well.  Esther was having a better night than last night.  She came off CPAP for her cares.  William had an hour off and seemed to be doing really well. 

I really missed being with the babies today.  I sorted out their clothes, muslins and blankets, and made a start on the baby washing.

It was nice to have some time with Julie too.  I really wish that she was here to stay.

Not Such A Good Day for a Wedding!

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7.8.2010

David and I should have got married today!  It is raining though so not such a good day for a wedding!

Had a good but tiring day with Julie yesterday.  Think I will be having a Dessy bridesmaid dress – price permitting!

Julie, David and I got to the hospital at 9am this morning.  William seems much improved.  He is going up to 7mls of milk hourly today and 8mls tonight when hopefully his long line will also be taken out.  He is back on normal CPAP but with some oxygen support.  He looks healthier and seems to be having less desaturations.

Esther is continuing to do well and will continue on 8mls of milk an hour and 3 hours twice daily off CPAP. 

William is allowed off CPAP for cares and possibly for a short period later in the day.  The doctor is pleased with both of them and doesn’t want to change too much or push too hard.

At 10.15am Dave went home, before that we had read Esther and William their stories.  Julie enjoyed them too.  Julie and I went to the canteen for a bacon sandwich and to meet Mum and Dad.  At 10.40 we all came back up so I could do Esther and William’s cares, with them all watching me!  The nurse offered to let me cuddle William but I refused whilst they were there.  It is a special time that I want to enjoy on my own, just me and William.  They left at 11.30 and I did some milk before settling in for the afternoon with my babies!

Today’s reading for both babies is Martin Waddell – Owl Babies; Dr Seuss – Oh the Places You’ll Go! and Jill Murphy – The Large Family stories.

Esther will be off CPAP at 1pm for 3 hours so I will read to her then.  I am reading to William now.

Both babies continued desaturating throughout the day, the doctor thinks this is due to their prematurity and is not overly worried.  Doesn’t stop me worrying though.  I love them so much!

Sat and worked out wedding numbers today.  I think it comes to 107 adults and 11 children under the age of 8.  Now need to work out who of those we will invite to the christening!?!  The christening will be at the church and then maybe at The Swan or in The Church Barn.  It will be January so quite cold.  I can’t wait!  There is so much to look forward to with these precious two.

Cuddles did not go well with Esther today.  She ws struggling to breathe and to get enough oxygen.  She was making horrible rasping noises as she exhaled.  It was horrible and she had to go back in her cot.  It made me feel like such a bad mother because my cuddles seemed to be the cause of the problem but the nurse said that it is probably just a bad day.  Poor little Star!  She seems quite pale today.  The nurse said that the paleness is caused by their not being enough oxygen in her blood.  Once back in her incubator with 25% oxygen Esther was able to settle and regulate her breathing. 

This whole process is so tough emotionally.  I hate it!  I just want them to be older and better so that I can take them home!

Both babies had new CPAP tubes today.  They are renewed every week. 

They have both gained weight too.  Esther is about 2lbs 5 and a half ounces and William is almost 3lbs.  It is very exciting to see them grow, just so disheartening when things go wrong or not to plan.  I just feel so useless sometimes!  All the nurses were very nice to me today as I sat and cried after Esther’s episode.  Poor little Star!  This is such an emotional rollercoaster and we are only 2 weeks in.  There are still so many ups and downs to go.  I went to the toilet for a good cry and then I came back and read Esther her postcard from Granny Henley, and some stories.  She was much more settled by then, even with a dirty nappy!  I will change her once she is back on her CPAP. 

After lunch and milk I had a lovely cuddle with William.  Once I put him back I read him two stories from The Large Family collection which he seemed to enjoy.  Then it was Esther’s turn for cares.  I did her mouth, washed her face, oiled the skin on her arms and legs then changed her filthy nappy.  I then read her final story of the day, The Owl Babies. 

David arrived at 5pm, just in time to do William’s cares and have a lovely cuddle with his son.  It was very emotional to see David cuddling William for the first time.  I read Oh The Places You’ll Go to David and William as they sat together.  Was a lovely way to end the day.  I love my little family, I really do!

Pressure Assisted CPAP

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6.8.2010

Not such a good morning this morning.  William has been put on Pressure Assisted CPAP over night.  This gives him a push of air 30 times a minute to help him breathe.  He was struggling over night which is why this has been done.

Esther also seemed troubled this morning, with oxygen levels down in the 70s and 80s.  It is just typical that the one day I plan to go out things feel like they are going wrong.  Esther’s breathing was regulated by giving her a dummy to seal  the CPAP and stop her losing all her oxygen through her gaping mouth!  She sleeps like my Dad, mouth wide open!

William did not manage any time off CPAP last night as he was desaturating whilst still on it!  They are going to try him off again today to see if last night was just a blip.  This will happen after he has had a blood transfusion which is definitely happening today.  It all sounds bad but the doctors are not too worried about him and continue to be pleased with Esther’s progress.  She is continuing with the same regime.  William is going up to 5mls of milk an hour today and will have his sodium in his milk.

Pictures of some of our first ever cuddles …

Head Over Feet

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William had his cuddle time after Esther. I fell head over heels in love with him during this time. He was looking right at me and making the cutest facial expressions. All the nurses were cooing over him and saying how handsome he is. He is getting a bit chubby now compared to what he has been. He is going to be a beautiful baby boy. Continue reading →

29 weeks today!

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4.8.2010

At hospital by 9.  David and I changed their nappies whilst waiting for the doctors to start their rounds.  Both babies had done lovely yellow poos! 

Esther is now on 6mls an hour of milk and it will go up to 7 by this afternoon.  Assuming that she tolerates this well she will be considered to be on full feeds and her long line will be removed tomorrow!  She is doing so well, as well as a premature baby can do, according to Dr Long.  I am so proud of our lovely Esther Grace.

William is doing okay too.  His milk will hopefully go up to 2mls an hour this afternoon.  He still has a heart murmur and is having quite regular periods of forgetting to breathe.  Dr Long warned that this could lead to him being put back on to a ventilator for a while but there are a couple of other things they can try first.

Both babies are being given extra sodium because they are losing too much in their wee.

David left the hospital at 9.30am and I got ready to do some milk.  I was going to sort the house out today but I just want to be with my babies!

After expressing appx 120mls of milk I gave Esther and William their first ever toys.  Their blankies!  A giraffe blankie for Esther and an elephant for William.  They look so cute!  So perfect.  I got some lovely photos.  I also put a couple of white muslins in each of their drawers with a white blanket for Esther and a yellow one for William.  I can’t wait to have them out for cuddles wrapped up in them.

The twins would have reached 29 weeks gestation today.  11 weeks til their due date when they just might come home!

William’s milk went up at 11am to 2mls an hour.  I need to put 200mls into the fridge each morning and freeze the rest.

The nurse today told me that Esther only managed 2 hours off CPAP last night.  So William and Esther are both just having 2 hours off today.  There is no point pushing them more and making them tired.

Both babies were sleeping soundly this morning.  I think it was their new blankets that kept them so calm.  Neither of them fidgeted at all.  They both seemed so peaceful.  I used the time to write out birthday cards that I have been meaning for ages to do.  Maybe I should have gone home?  But I feel that I should be here just in case.

William seems to be having breathing episodes at more frequent intervals.  I am really quite concerned and hope that he can improve on his own before intervention is needed.

Poor William had a new cannula fitted today.  He did not like having it done at all.  I hate it when he cries and I cannot be the one to comfort him.  I love him so much.  Once the cannula was in he seemed to settle quickly again and went straight back to sleep.

My plan for today is as follows

12 – lunch, 12.30 – milk, 1.00 – both babies off CPAP and allowed out for cuddles, 3.00 – cares for both babies, 3.30 – milk.

What a lovely afternoon!

And it has been a lovely afternoon!

William came off his CPAP first and came straight out for a cuddle.  We did Kangaroo Care where he is inside my top so that we can have skin to skin contact.  We stayed like that for one hour whilst I sang and chatted away to him.  I told him all about the nursery and the playroom waiting for him at home.  It was a lovely hour but my scar got really irritated by the heat of William’s body.

After a loo break and some photos – and changing William’s dirty nappy – it was Esther’s turn to come out.  We wrapped her up in her new blanket and she was promptly sick all over it!  Her milk has been upped to the max of 7mls per hour and it seemed to have made her sick.  Poor little Star!  After our very special cuddle time I changed Esther’s nappy and oiled her skin.  She seemed to really like it as I massaged the oil in.  At the end of 2 hours William and Esther had their blood gases tested.  William’s was not so great so his CPAP went back on, Esther’s was good and so she stayed off for 3 hours.  they tried for 4 but she was just too tired.

I did some milk at ten to four and now I am waiting for David but have no idea when he is coming, or if Clare, Sujo and Rohan are coming too?!?

The doctor handover was at 4.30pm.  No cause for concern with either of our babies.  They just need to continue to grow stronger every day and they MUST remember to breathe!

I asked the nurse today about what babies can see.  She said that they can see shape and shadow.  Nearer to their due date they will make out figures in black and white but it will only be after their due date that they be able to actually see us and begin to recognise us.  But what they can recognise and remember now is our voices and our smell.  Poor little babies.  They cannot see!

Esther is now off the TPN fluid.  She is on 10% dextrose and 7mls of milk an hour.

William is slightly anaemic but nothing to worry about yet.  He is also borderline for needing to go back under the blue light for jaundice!  Poor William.  He is not doing so well.  He has slept a lot today though and seems to be tolerating his milk and so will hopefully go up to 3mls hourly tomorrow.  Come on William, precious little boy.  We are all rooting for you!

A full term baby came on to the ward this evening, called Phoebe.  She was very cute.  The nurses were all cooing over her and cuddling her.  I can’t wait til mine are more grown!

It has come to my attention today that I am the only person who spends all day here on her own.  I think the parents of the other twins are living here and Eddie’s parents are here all day but always together.  Other babies seem to spend a lot of time alone.  I now that there are things I could and should be doing but none of them seem important right now.  I just want to be with my babies but it can be such a long and lonely day.

Caught Red Handed!

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3.8.2010

We were late to the hospital today as I fell back to sleep whilst David was in the shower and then I needed to express more milk as I was leaking everywhere!  Got here at about 9.30am and the doctors’ rounds were underway.  We waited in the parents’ lounge whilst they worked on the other twins.

This morning in the post we got confirmation of Esther and William’s first out patient appointments.  They are on Thursday 9th December 2010 at 2pm and 2.40pm.  They will be 6 weeks old by their corrected age and actually 4 and a half months old.  It is good that they give so much notice and wonderful that they are confident the twins will both still be around.

Caleb is gone this morning.  Machines are off and cot renewed!  So sad!

The doctors are still pleased with our two.  Esther is staying on the same milk and William is having 1ml hourly for today.  William will have 2 hours off CPAP twice today and Esther is continuing with 4.

At 10am I did Esther’s care.  I really took my time and talked to her and sung to her as I worked.  I had a bit of a fright when I found blood on my hands!  I called the nurse in panic but it was just where her heel prick was bleeding.  It did give me a fright!

At 10.30am William was due his new house.  I was allowed to cuddle him for half an hour.  It was wonderful!  I sang to him and talked to him about his Daddy and all the exciting things they will do.  At 11am I went to do milk.  I only managed about 100mls despite all the cuddles with young William.

The nurse has given me William’s first CPAP hat to keep as he needs a bigger size now.  It is the first thing to go in his keepsake box!

Esther came off her CPAP at midday and William was given a woollen blue blanket.  While Esther was off I read her a version of Rapunzel where the princess gives birth to boy and girl twins!  As the story finished it was time for William to come off for his 2 hours.  He was clearly working hard but looked very relaxed.  His hair is so dark and seems to be starting to get long.  William was struggling off his CPAP.  The nurse turned him onto his stomach but he was still working very hard.  the nurse gave his mouth some suction and also some facial oxygen to help his levels.  Poor little William!   He needs to grow big and strong.  Esther seems so much more stable.  I love them both so much!

Today I am at hospital 9.30 – 1.30 and 4 – 6.  Tomorrow I am hoping that David will agree to us both doing 8.30 – 11 and 5 – 7, possibly with Clare and Sujo here in the evening.  The house is starting to get to me so I want to spend some time tomorrow sorting and tidying.  David and I are also going to buy some furniture to store our clothes and for the nursery.  We also need to collect a cot bed from a friend.  There is so much to do when all I want to do is be with the babies.  Our babies!  Our beautiful babies!

Had a lovely lunch with Michele and Edward.  Bought some olive oil for the babies skins, maternity pads, breastfeeding vitamins, 5 giraffe sleepsuits and a blanket for each of the twins.  Esther’s is cream and William’s is yellow.

Got back to the unit at 3.45pm, in time to do Esther’s cares.  More yellow poo!  Esther did not quite manage ger 4 hours off CPAP but William did his 2.

Michele came in to see the twins for half an hour and then she left as I needed to express some milk.  For the first time in 10 days there was not a steriliser free when I needed one.  I am waiting patiently now but feeling like I might burst!

William has had the cannula taken out of his arm so both his arms are wire/tube free for a while.  He has grogeous arms, just like his Daddy!  Michele said that she is starting to see David and I in the twins now and particularly in William.

David is coming back to the hospital at 6pm.  I hope that I have managed to express by then!

To my untrained eye Esther seems to be struggling with her breathing today.  Admittedly a lot of it is to with the fact that she keeps pulling off her CPAP mask, but it was quite worrying to watch.  On a positive note, from 2pm Esther has been on 5mls of milk an hour.  Such a good girl!

Speaking of milk – it is 5.15pm and I am still waiting to express!

5.30pm and appx 140mls espressed.  Phew!  I had to use the spare pump in the quiet room as I was quite worried that I might explode!

I came back at 5.45pm and Esther still looked like she was struggling.  She looked unhappy and not at all at ease.  I am quite worried about her actually.  Poor little Star!

William looked more peaceful as the evening began. 

I am taking their blankies home again and am going to sleep with them tonight then bring them back, as recommended by the nurse.  Will wash their blankets tonight too.

Both babies set off a lot of alarms today with their breathing.  Come on Babies!  Be strong for Mummy.  She needs you to fight through this and grow big and strong so that she can take you home.

I spoke to Caleb’s Mummy.  He took any decision out of their hands and passed away early this morning.  She is being so brave and strong, hoping and praying now that Maya will survive.  I cannot imagine being in her position.  I could not bear to lose Esther or William.  I love them both so much!

By 6pm Esther seemed to be calming but William was getting upset.  I hope they have a restful night.

Sleep sweet our beautiful son and daughter x

Night Sweats

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1.8.2010

Both babies can now fully open their eyes and had some awake time today when we arrived. 

Both babies have gained weight, Esther 58 grams and William 40 grams.  They both managed 2 hours off CPAP last night.  The doctors are really pleased with them both and said that they look lovely.  The midwife said that they are very straight forward babies making good progress and we can hope to take a few weeks off their due date for when to expect them home.  So they may come home in early October!! David says not to get my hopes up to high and work to 12 weeks so that any earlier feels like a bonus.

Today Esther’s milk is being upped to 3mls every hour and William’s to 1ml every 2 hours.  He is still losing bile from his stomach but does this with or without milk and it is not causing him discomfort.

Both babies will have 2 hours off their CPAP today.  Both babies are having their humidity reduced in their incubators.  It should be down to 50% by Day 10.  That will be Tuesday.  When they reach this target and their body temperaure is stable they will be allowed out for cuddles and maybe allowed to get dressed a little bit! I am going to ask Mum and Dad to buy them each a blanket that covers their cots and a swaddle robe/hat for cuddles.  These can stay with them in the hospital as a memory of their Nanny and Grandad Nairn.

When we arrived this morning I did Esther’s care whilst David held her hand.  William’s cares are due at 12 when Esther should also come off her CPAP.

Both babies look so peaceful today.

My operation scar is very painful today.  It has a bit of infection at the top, which should hopefully clear up by itself or else will need recutting, draining and a course of antibiotics.  It is so sore because of where it is, where my tummy naturally folds and sweats. Nice!  I have been having terrible night sweats.  I wake up in the middle of the night to find myself and the bed sodden. Not very nice at all but is very common after giving birth to rid the body of excess fluids and toxins.

David and I skipped the middle of the night ‘feed’ last night, doing 11pm and 5.30am.  It was nice to sleep through while we still have the chance but seemed to make us feel lazier in the morning. 

Dicken came round for tea last night.  He is a funny old soul!  Good to have some time with friends and to unwind a little while we can.  David and I did talk about the babies alot though and showed him all our photos!

Esther came off her CPAP at 12.00, just as my Mum and Dad arrived.  They watched Esther while I did William’s care.  Today there was something new added.  He had a tiny bit of milk on a stick put into his mouth whilst having his tube feed.  The nurse today said that this is very special and an important step towards breastfeeding.  I also helped the nurse change his bed.  I really like being so involved with their care.

After having lunch with Mum, William got himself quite upset, I was able to calm him with a comfort hold and by holding his hand.  I love it when he holds on to my finger.  I love everything that he does.

Esther had her eyes open quite a bit whilst off her CPAP.  I comfort held her and sang to her, and when she forgot to breathe I tapped her little bottom to get her going again.

I am loving getting to know our babies and becoming more confident with their cares.  I have learned so much in such a short space of time, and I know that there is more, much more, to come.