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: high dependency
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!
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
