While the babies were off CPAP I read them their Bookstart books, This Little Baby and Tickle Tickle. They are not very exciting. I was actually very disappointed with the Bookstart pack as it only contained 2 books and lots of adverts and catalogues. A pack makes you think it will be a pack of books not just two! Very disappointing! Continue reading
William pulled his feeding tube out this morning and so had to have a new one pushed down.
I did William’s cares at 2.30pm. I really took my time with his mouth, nappy, body wash and oiling his skin. He was good as gold. While I was with him Esther pulled her feeding tube out! Continue reading
15th August 2010 Arrived at the hospital at 8.30am to find William coming to the end of 3 hours off CPAP. He had a good gas and was able to stay off for almost 4 hours. This makes me nervous … Continue reading
written 19.8.2010 about 24.7.2010 Today I have been trying to remember what happened after I gave birth to the twins. I remember being in a daze and Fiona, our midwife, being an amazing source of comfort and support. I remember … Continue reading
Happy Birthday Babies! You are 3 weeks old today! Feels like you have been here forever, yet there is still so much I do not know. I love you both more than all the world and so proud of the progress you have made these past three weeks. Well done Will Henley and Little Star! Well done indeed! Continue reading
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.
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
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
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!
