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!
Monthly Archives: August 2010
Breast Mates!
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
Lo Flo!
25.8.2010
From 9am – 11am this morning has been very busy, though still no sign of the doctors. David and I arrived to find Esther and William in the same incubator again, just for a short while as Esther was getting a new house. At 9.30ish she was moved back and I did William’s cares. He wee-ed all over his bed so I changed his bedding and his clothes too!
At 10am William came off CPAP and instead of oxygen in his incubator he now has Lo Flo oxygen which goes through a tube in his nose. He started on 0.05 of a litre and is now on 0.02. He has not had a desaturation for one hour and twenty five minutes!
Esther also has Lo Flo but her oxygen requirement is higher and she still has regular desats.
Esther’s weight stayed the same overnight and William gained 46g and is back up to 1690g.
Dr Long is doing a proper round tomorrow, for today we are trusting Jane’s decisions.
William is now on 25mls of milk every 2 hours and Esther is on 20 mls 2 hourly. Esther will try for 8 hours off CPAP and 4 hours on. William is trying all day off and 6-8 hours on over night. They are both now having nasal cannula oxygen instead of ambient whilst they are off. This means that they can come out for cuddles at any time and also can spend some time together in the same incubator. We are making slow progress in the right direction.
Came back from lunch to find both babies quiet and stable. William’s oxygen saturation was 100%. Esther was having some desats but they seemed to be fleeting. So far so good. All there is for me to do is watch and wait.
The temperature in both their incubators is down to 29 degrees. Jane is getting them ready for the big wide world, or an open cot at least!
I am getting very slack with my milk. Today I did it at 7.30am and 12pm so far, that is a gap of 4 and a half hours, I need to get down to gaps of no more than 3 hours. My schedule should be
6.30am, 10am, 1pm, 4pm, 7pm, 10pm and 2am
But it never is, life just seems to get in the way! Doctors and cuddles are the main routine busting events!
Jane has just explained that all being well William will stay off CPAP until 11pm tonight and then go on until 5am when he will come off again. At the moment his nasal oxygen is set at 0.01. Esther is set at 0.08 and and there is a larger meter on stand by for her in case she needs much more. They both, at the moment, seem settled and stable. Touch wood!
Have arranged with Jane to have the babies out for cuddles after lunch. We are both going to lunch from 1pm- 2pm. I am going to cuddle both babies from just after 2pm to 4.30pm. Then I will do milk and then have story time with each before going home when David gets here. Hopefully the IKEA delivery will have arrived.
First Cuddle with both Twins 15th August 2010
After lunch had a lovely cuddle for about an hour with both babies. I then changed both their nappies and settled them down.
While I was doing cares Jane took swabs for MRSA. Now I know that they do this routinely but today the swabs were labelled NICU Screen and all the babies were done at once. I have a feeling that either the swab was not testing for MRSA or that MRSA is the infection on the ward!!I have no idea as no one is allowed to tell us anything. But, the swabs were taken straight after a meeting to discuss the infection. We get the results in 2 days!
After cares I had a quick cup of tea and did milk.
When I came back William and Esther were both fast asleep. They seemed stable with very fleeting desats. This was in spite of their oxygen prongs often being nowhere near their nose! I read both babies ‘I Love You Sleepyhead’.
By 5pm I realised that William’s Lo Flo was on 0. No oxygen! And he seems really quite stable. Esther’s is on 0.12 which roughly equates to 26/27%, which is the level of ambient oxygen she needed for much of the time. And again she seems quite stable. I think that in an ideal world they should be keeping their respiratory rate below 70 and they are managing that much of the time. We will see how tired they become. They have both taken big steps forward today, I hope that those steps will not have consequences!
Just waiting for David now. I am ready to go home. Milk plan for tonight is 7pm and 10pm, 2am and 6.30am. I am so tired but need to maximise milk supply in readiness for breastfeeding. Esther and William are 32 weeks today. It can’t be long now!
I am getting much more confident in the unit. I am not afraid to ask questions, I chat to the staff and some of the other parents, and grandparents. Today I also told someone that they should not have their mobile phone on in the ward! Perhaps having some time out over the next few days will do me good, though I will miss the little ones like crazy! I will be doing things that are for them. Things that have to be done before they come home.
I was restless by the end of today and just wanted to go home. I feel like I am a terrible person for saying it but I just feel for the first time that I need some time away. I think it is because of the stressful atmosphere in this room now it is full of incubators and buzzers like NICU. And with not knowing what is going on with the infection.
I have told Jane my plans for the next few days and attached a schedule of my comings and goings to the babies’ notes, hopefully that will avoid any confusion.
Think this week also tough as had hardly any visits with Clare and Michele both away.
Hurry home ladies!
One Month Old Today!
24.8.2010 Esther and William are one month old! Arrived just before 9 to find Dorota caring for the twins again. Over night both babies had their off CPAP time extended so she, quite rightly, did not take them off again … Continue reading
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
No Visitors!
There is a visiting ban on the ward at the moment for everyone apart from parents and grandparents. It is because there is an infection on the ward. One of the symptoms is diarrhoea which means that they are keeping a close eye on William. There is always something new to worry about! Continue reading
Sticky Stools!
21.08.2010
Happy 4 week birthday Babies!
Arrived at the hospital at 9am to find William off CPAP. He only had 2 hours off last night as he had a few bradys and desats (low heartrate and low oxygen levels). He came off at 8.30am and will stay off until 2.30pm all being well. At the moment he seems quite stable in 22% ambient oxygen.
Esther is on her CPAP but is in air and seems stable. She will come off at 12, hopefully for 4 hours. Her cares are due at 12 and so my plan is to start William at 11 and then move on to Esther before she comes off her CPAP. When she is settled off the CPAP I will wash her face and ears, and dress her in her lovely new clothes. It is much easier to do while they are not connected to so many things!
Esther has gained weight and her feeds have now gone up to 10mls hourly. She weighs 1.33g which is so close to 3lbs! The nurses are talking to the doctors today about increasing her caffeine to help with her bradys and desats. She will also hopefully start to have it twice a day which William already does. Louise thinks that this new dosage will sort her out.
William now weighs 1645g which is almost 3lb 10oz. He gained 10g.
I am very cross today that I have a dead camera battery so will have no photos of the twins on their 4 week birthday! I charged the battery overnight but I myst have done it wrong! Oh dear.
Dr Chalmers came to see Esther and William today. She is their named consultant and we will be going to her clinic when we leave here. She has put William back to hourly feeds after his episode last night and has upped his caffeine dose to match his new weight.
William passed a ‘sticky stool’ last night, with some mucus, so a sample has been sent to the lab for testing. I wonder if it could be because they started iron supplements yesterday? Esther’s caffeine is also being upped and will be given twice daily from now on, the same as her brother. She will remain on 4 hours off CPAP. I really don’t want her pushed as she gets so tired towards the end of her time as it is, and I want her to use all her energy for growing. She looks so tiny today! My perfect little Thumbelina!
At the end of their time off CPAP today, when their blood gases are done they will also both have their HB measured. As they both seem to be struggling today I will be very interested to see those results. Today is not a good day for Esther and William. It is a day when what they really need is sleep. They are desatting, all be it fleetingly, every few minutes.
At 11.40am I did Esther’s nappy and body wash. I will wash her face and dress her when she is settled off CPAP.
William has just had his 12 o’clock feed and promptly threw up his vitamins.
When I did Esther’s nappy her poo was a bit different so I am hoping that it is just the iron for both of them.
I am going to read William a story while his feed goes down and then will do his cares. Then maybe do some singing, if he is awake.
I wonder how David and Tony are getting on? They are building the buggy garage today.
William has really loud hiccups! I am used to hearing them from Star but I am sure this is the first time with young Will! He looks like an angel when he’s sleeping. I changed his nappy and gave him a wash at 12.15pm. He was so good. He loves being handled at the moment where Esther is not so keen. He was wide awake and being adorable. He is in air and has high oxygen levels. He looks so cosy! He does have a runny tummy though. Poor thing. We have to wait until Tuesday or Wednesday for results from the lab. Please don’t let it be anything too serious! I love him so much. He is such a little cutie!
Esther is in 27% ambient oxygen and seems quite stable now. Bless her. Our lovely, tiny little Star! I call her Thumbelina because she is so tiny but so perfect. Keep growing little one.
The Book!
“The infant comes into the world bringing formidable capapbilities to establish human relatedness. Immediately he is a partner in shaping his first and foremost relationships.” Daniel Stern Continue reading
Happy Birthday Grandad Henley love from your Grandtwins!
William is now being fed 24mls every two hours. The idea is that he starts to experience hunger and he did! 15 minutes before feed time he got very cross and started looking for food! He had to be fed 15 minutes early and then he calmed straight down. Now I hope that he does not throw up all over his nice new clothes and bedding! This is a very positive step towards breastfeeding. Next step to put him to the breast during his tube feed so that he associates being at the breast and feeling full. I cannot wait to try feeding him myself. It is such a natural other child thing to do and I have not even been able to try! Continue reading
The Twins’ New Clothes!
Esther's first hospital outfit
William's first hospital outfit
18.8.2010
Esther and William are wearing clothes! Arrived at the hospital to find William in a grey sleepsuit and Esther in a little pink dress! I want to go home and get their own clothes! I want to buy lots of special premature baby clothes! I am so excited! Esther and William are wearing clothes!
They both seem to be doing so well! Esther gained weight overnight and now weighs 1250g which is 2lb 12oz! Her cares are due at 2pm today. She will come off CPAP at 3pm so I may ask for a cuddle from about 1pm?
William’s cares are due at 3pm, so will do just before he comes off. Hope to have a cuddle with him too, maybe at the same time as Esther or later in the morning depending on the timing of the doctors’ round.
Did I mention that Esther and William are wearing clothes?
There are less babies in our room today and nice nurses so it seems a good and relaxed place to be, and Robbie is on the radio! Always a good thing!
William lost weight over night. 25 grams. He now weighs 1585g which is approximately 3 pounds and 7 and a half ounces. I am glad that he has lost a bit of weight as this hopefully means that we can stop worrying about fluid retention and possible infections. He looks really well. He is starting to look like a proper little baby! Today his OGT (Orogastric tube) is being swapped for an NGT – nasogastric tube! The nurse says that this is because he is no longer so reliant on the oxygen or the pressure coming from the CPAP. I am not so sure about this and I am quite worried about him having too many things up one nostril!
I only have 3 pages left in this journal, I hope nothing too exciting happens today!
The doctors are pleased with both Esther and William. Esther’s off CPAP time is being extended to 4 hours and William’s to 6! He will be off from 2 – 8 am and pm! The nurse is confident that he will manage fine but I must admit that I am rather apprehensive.
At 11am I did Esther’s nappy quickly before having her out for a cuddle for almost 2 hours! She was on CPAP but just in air for much of the time. We did kangaroo care so she was tucked up inside my t-shirt. It was just wonderful!
After a quick lunch I did William’s oral care and nappy before he came off his CPAP and then came out for a cuddle. I held him in my arms so that I could see his face. He was wide awake and practising his facial expressions. He is such a gorgeous boy! I love him so much. I love them both and I want to take them home! Tina, one of the nurses, said that this could be as early as 36/37 weeks and to be ready by 34 weeks as I will be expected to be at the hospital all day every day from then to establish feeding. That means that we have 3 weeks to get the house sorted and they could be home in 5!!!!