Today had an exciting start as Jane wheeled in the twin cot! William is making his move today and Esther should follow in a couple of days. Luckily I have started washing the bedding already! Continue reading
One More Step Along the World We Go!
Category Archives: SCBU
Chronic Lung Disease
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!
Graduation Day!
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!
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
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
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
Through His Leg to His Heart!
Wonderful news! Esther is out of humidity and in a dry cot with a temperature of 34 degrees. She now needs lots of blankets to keep her warm and is allowed out for cuddles but whist on her CPAP not off.
William struggled to do 2 hours off his CPAP today (early am) but will try again this afternoon. His cares are due at 1pm and Esther’s after the doctors. Esther’s milk is going up today to 4mls an hour. She is tolerating her milk well. William is staying on 1ml of milk 2 hourly as his stomach is still distended. He will be reviewed at 2pm and hopefully start 1ml hourly.
Just after the doctors we did Esther’s care. She had a very messy nappy, one of the more negative effects of breastfeeding. After the nappy we did milk and I expressed the most ever, almost 200mls.
When we came back Esther was allowed out for a cuddle. First I held her while David read her a story and took photos. Then we swapped. It was wonderful having her out and it was clear that she enjoyed it too.
While we were focused on Esther, William had his long line removed because his arm was red and puffy. The line had ’tissued’. They will put a new line in this afternoon but for now his fluids will go through a cannula in his hand.
While the doctors continued to work on William I read Esther her first fairy story while she was off the CPAP. We read ‘The Frog Princess’.
William cried and screamed a lot as the doctors worked on him. It was horrible and I had to fight back the tears. I love him so much and hate hearing him cry. Once all the horrible procedures are over William will have his humidity turned off and be like his sister. Both our babies are doing so well but Esther is just that bit stronger than William.
David left the hospital at 11.45am and is coming back at 6pm when William should be off his CPAP. Clare is coming just after 1pm. I am not sure that I will be able to do William’s lunchtime care as it is already 12.50 and the doctors are still all around him.
My scar is still really red and sore. One of the nurses commented on it and asked if I was on antibiotics. I am more welcoming to the idea of antibiotics now that I know I can continue to express milk.
This afternoon I hope to read William his first traditional story, Six Blind Men and an Elephant, if we have some quiet time.
I went to lunch with Clare and Rohan after doing William’s mouth and nappy. I came back to do milk at 2pm. Esther was still off CPAP and doing really well. William’s new line was in and they were waiting for an xray to confirm that it was in the right place. Poor William, another dose of radiation!
Esther is doing so well today, almost 4 hours off CPAP with no oxygen. What a little star! Her next care is due at 4pm when she will also go back on her CPAP.
William’s line now goes through his leg to his heart. Poor little creature! But the procedure is over, again, and he can begin to recover, again. My lovely little man! William was being given lots of medical care this afternoon and so I spent my time with Esther. I sang her songs and read her poems, and she had her eyes open the whole time! She seemed so peaceful but towards the end of her time her breathign looked more laboured, yet her desaturations were fine?!? The doctor came and I asked him about it but he said she was fine and he would expect her to have to work hard at the end of the session.
Both babies are now allowed a toy in their cot. I am going to bring their animal blankies in as soon as I have washed them. I have asked my parents to buy blankets and swaddle robes for each so hopefully they will.
The nurse showed me today how to tuck a baby into a cot, tight on one side and half of the bottom but loose on the other side so they can kick off the covers if they need to and don’t get stuck in the blankets.
The twins had head scans today. Both results were normal. More good news!
Today has been a good day. And Caleb, the little twin, is still here too.
I am looking forward to tomorrow too, morning in the hospital then a break in the afternoon to have lunch and go shopping with Michele. I am going to buy muslins and blankets that can be used as covers at the hospital. Also tonight I am going to wash their swaddling robes so that they can be used for cuddles. It feels so good to be allowed to start giving our babies things. I love them both so much and want to give them everything I can. My beautiful son and daughter. Our family.
We will not see William off his CPAP today as it is not due until 8.00 tonight. We finished the day by changing his nappy before going home.