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 hoepfully 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 ger 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.