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

Contagious!

10.8.2010

I did not go to the hospital this morning as I had a sore throat last night and this morning and was worried I might be contagious!  I went to the doctor who told me that I am just tired but did give me a 7 day course of antibiotics to treat the infection in my scar.

David went to the hospital this morning but was not called in for the doctors’ round.  We know that both babies were okay over night.  William had two hours off CPAP, Esther is on continuous CPAP with some rest breaks for cares.  Esther has gained 29 grams and William 30 grams.  Esther now weighs 1115g, appx 2lb 7oz and William weighs 1440g which is appx 3lb 3ozs.

William had to go back on his CPAP after 50 minutes today.  His heart rate and oxygen dropped.  He went a bit blue as he did yesterday.  Poor William!

At 4pm when Michele came I was allowed to have a cuddle with Esther.  It was wonderful!  I sang to her softly and she was so relaxed.  Her oxygen levels were stable and her heart rate came right down.  Cuddles are good, for babies and for Mums!

At 5pm we did William and Esther’s cares.  I also oiled Esther which she really enjoyed again.  Now to wait and see what tomorrow brings!

Goodnight Babies x x x x

Aunty Julie

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.

Pressure Assisted CPAP

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

William010

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!

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!

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

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