12.9.2010 Today we got to the hospital just before 8.00am, ready to do Esther’s cares before her first feed. David did her cares and then she had a really good breastfeed. She was given a half top up. Today she … Continue reading
Esther has been high saturating in air (actual air!) for much of the morning. She has no prongs in her nose and is not attached to the wall!
….She has done almost 5 hours unplugged now! Continue reading
01.09.2010 33 weeks today! Arrived at 8.20am as Jane was leaving her night shift for two weeks holiday. She left us a little present, both babies are now on 3 hourly feeds! They seem to be tolerating them well and … Continue reading
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
26th August 2010
Today I woke up at 6.30am to do milk and then phoned the hospital to see how Esther and William were doing. William had a blood transfusion over night as his Haemoglobin had been really low. He managed all his time off CPAP and was only on from 12am – 6am. Well done William! He gained 55 grams overnight so now weighs 1745g which is 3lbs 8ozs. He is still feeding every 2 hours and is up to 26mls for each feed because of his new weight.
Esther gained weight too and is now 3lbs 3ozs or 1475g. She is tolerating her 2 hourly feeds and is up to 22mls per feed in accordance with her weight. She did 7 and a half hours off CPAP and had a good gas.
Today David and I stayed home until 2pm to sort out the house. I was reassured through my phone call that this would be okay and confident that the babies would be fine as Louise was caring for them. Got quite a bit done at home but still have much to do over the coming days.
At 2pm we arrived at the hospital to catch up with our babies through Louise. They have both had a good morning on their Lo Flo oxygen. William was in air for much of the time and Esther was fluctuating between 0.05 and 0.12. They both need a whiff more oxygen when they are being handled. Esther was working hard on her breathing so Louise thought she might not make her 8 hours today. What we don’t want is for her to work so hard that she uses too much energy and does not gain weight.
The best part of today was William having his first go at breastfeeding! I was a bit shocked when Louise first suggested it and I felt terrified. Absolutley panic stricken that I would not know what to do. I became self conscious and worried. Nervous. I asked for a screen to shield me from other people in the room in case I did it wrong!
But … I got William out and put him to the breast and it just felt like the most natural but magical thing in the world. Not that he really did very much. It was the way he looked at me and the warm feeling of his breath on my chest more than anything that made my heart miss a beat with love and adoration for this tiny perfect baby boy that is mine! He did lick around the nipple and had a bit of a nibble and suck but nothing much at all before falling asleep. And I just held him and watched him sleep and it was perfect and I was filled with love for him. Our beautiful baby boy! Such a clever little thing. A clever, sleepy thing!
I can’t wait to get back to the hospital tomorrow and try the feeding again!
http://www.preemie-l.org/bfaq.html
http://www.bliss.org.uk/page.asp?section=580§ionTitle=Breastfeeding+your+premature+baby
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!
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.
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 …
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
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.