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 until 1oam. Esther had 7 hours off over night and William did 9! Apparently both coped really well and had good blood gas results.
Esther gained 10g over night and now weighs 1420g. William lost weight! Quite a lot of weight actually, 56 grams! He is back down to 1644g.
Today Dr Long did a quick trouble shoot and not a full round. William is to stay off CPAP for as long as he is comfortable, should be at least 6pm but possibly later. He is also going to try two hourly feeding again. Esther is going to have 7 hours off CPAP, 5 on today and will continue with hourly feeds. She is looking pink and glowing since her transfusion but is still desatting regularly and is on 27% oxygen.
I have done both babies’ cares this morning. Washed, dressed, nappy changed and reunited with their elephant and giraffe blankets.
I have been asking about the infection today but no one is allowed to say what it is. I asked what the symptoms were and apparently there aren’t any! The only way to find out what the infection is, is to ask the Mum and I am not sure I can do that. But I really want to know, it can’t be as bad as the things that I imagine!
We are no longer allowed to bring drinks into the room because of a risk of infection. Contamination! I asked how long they think the infection may remain on the ward and no one seems to know but could be weeks!
Not sure what a plan for the day can be so as William and Esther are off CPAP for so long and Jane is on. She does not believe in getting babies out for cuddles off CPAP!
At 12pm William had a bad episode, severe bradycardia and desats combination. He had to be stimulated. That would have terrified me a few weeks ago but now I am confident that William can sort it out with just a little help. He is a good, clever boy just born too soon. Wonder if I will ever forgive myself for that?
William seems fine again now, curled up on his tummy. It is so scary when he does that!
Today for story time I have got 3 new books for Esther and William to share. They are presents to celebrate being one month old. The books are:
On the Night You Were Born by Nancy Tillman
I Love You Sleepy Head by Clare Freedman
Oliver Jeffers’ The Way Back Home.
I cannot wait until they are old enough to see and enjoy the pictures!
Heard lots of sneezes from Master William. Cause? He had pulled out his nasogastric tube!
Nothing much has changed so far today. William is quite stable in air or 22%. Esther is having regular desats in 27% oxygen. Her incubator temperature has been reduced to 31.7. She seems quite settled at the moment but we had some crying earlier on.
At 2pm I will go for my lunch and to do milk. Then when I come back I will do their cares. Today seems to be passing really quickly, I’m not sure why. Tomorrow is my last full day here for a while. Thursday, Friday, Saturday and Sunday I am going to try and do less hours at the hospital so that I can get some stuff done in the house. There is so much to do! Will also do less hours on Monday as we are going for a Henley sailing day in Bewl. Then Tuesday I will be back to full days again because hopefully we will start to think about breastfeeding!!!
Next Wednesday the twins will be 33 weeks and it will be September!
All being well we will be starting to prepare for home! Though we are still a long way off even thinking about home.
After eating my lunch I fell asleep in the lounge for a few minutes. I really do feel exhausted at the moment.
There is a queue for sterilisers and the breastfeeding room! It is so busy in the unit now. NICU is full, High Dependency has 5 babies in total, 4 of whom are on CPAP! The special care nursery has 4. So that is 21 babies all in. No wonder there is a queue for the one room where you can express!
And in the space of a few hours we are now top of this ward! Jane says that William is really not far off being in an open cot but they are holding out for Esther to catch up. She really has to be 1.5kg and her incubator needs to come down in temperature. This process has been started and she is coping well. When in an open cot they will each need vests, sleepsuits and hats. They will also need sheets, cellular blankets and normal blankets each.
We need to start buying bits or asking people for bits. It is very exciting. Babies can go into a cot with CPAP and can move to the next room on oxygen. All being well Jane thinks that they will be in an open cot by Monday. Jane is on on Monday and so we can make the transition then!
Jane also talked me through havig oxygen at home. It is quite a huge thing that involves piping around the house and informing house insurance, car insurance, telephone people and electricity board. We would be put on an emergency/priority list so that if there is a power cut / line failure it is sorted quickly. We would also get lots of home visits to monitor the babies’ progress as they continue to be weaned off the oxygen at home.
Jane gave me a leaflet to read about Chronic Lung Disease and home oxygen. It said that as parents we should consider having the flu vaccine before the babies come home. May be sensible for grandparents to be immunised too!
Esther went back on CPAP after six and a half hours, and William will go back on after 8 so that David can have a cuddle with him. They may try to extend them again tonight. Our very clever babies!