24th July 2010
Some photos from Day 1 in the life of Esther Grace Henley and William Nairn Henley.
Born to Jennie and David on Saturday 24th July 2010.
Esther was born at 7.33am weighing 2lbs and 4ozs, William followed at 7.55am weighing 2lbs and 11ozs. Both babies in special care unit but doing well. They are only 27 weeks so will be in special care for approximately 2 months.
Will keep you up to date with developments x
25th July 2010
Day 2 of the new Henley clan!
Esther and William have started having milk today, 1ml every 4 hours through a tube!
We were able to help with their care today which was just wonderful.
So much to do and learn before they can come home.
26th July 2010
A blue day with treatment for Jaundice but both babies stronger by the end of the day
Our first cuddle with Esther too, hopefully William will be allowed one soon!
27th July 2010
A good day with both babies doing well
Esther was very brave as she had a long line threaded through her veins for medicine and for nutrition I think
Fingers crossed for another good day tomorrow x
31st July 2010
A long day today with some tricky problems and procedures for William.
He was a very brave boy.
Both were sound asleep when we left them for the night.
Esther had a loud bout of hiccups today that made everyone on the ward smile and giggle.
Here’s hoping for a good day for both babies tomorrow.
6th August 2010
Today was the first day that I only spent about 3 hours at hospital. It was very hard but I think that it did me some good. In saying that, it will be a while before I leave them that long again.
Esther is doing well and was out for cuddles this afternoon. She is struggling to keep up good oxygen levels though so hoping there will not have to be any intervention for this! William had his blood transfusion today and is also now on pressure assisted CPAP because he keeps forgetting to breathe. This means that 30 times every minute there is a pressure exerted from the tube that helps him to breathe. I was very tearful today because he really seems to be finding life tough at the moment and I couldn’t bear it if anything were to happen to him. To either of them.
Can’t wait for morning so I can get back to our babies.
12th August 2010
William has moved rooms!!! He is still in his incubator and nothing else has changed but his location. Poor Esther is still in intensive care as she is too small and too sick to move.
Her xray came back clear and she is showing no signs of infection but she just cannot sustain her oxygen levels. Hopefully she will be strong enough to move in a couple of days.
Until then I am now torn between two rooms so days will need careful planning.
16th August 2010
Good day today. William has gained 80 grams and Esther 50g.
Both enjoying extended time off CPAP – 4 hours for William and 3 for Esther
All seems to be heading in the right direction
Fingers crossed we continue to do so
David and I are going to register their births tomorrow!
23rd August 2010
Today Esther and William are classed as having chronic lung disease as they have needed oxygen support for 28 days, this becomes more serious if they still require oxygen at 36 weeks (4 weeks from tomorrow) and the possibility of them coming home with oxygen is growing. The nurses seem confident this won’t happen but the doctor keeps making us aware that it might!
They will have a series of injections in their first and second winter to protect them from RSV the virus that causes colds and infections in small children.
We have to be very careful with the babies during their first winter and try to ensure they do not get ill as a cold for them could mean a return to hospital.
Today Esther had her blood transfusion. Hopefully this will help her to get stronger and require less oxygen.
Cannot believe that our little ones will be one month old tomorrow (today) 24th August 2010.
Exactly one month ago we were in the hospital and they were being born.
One month has seen so much change and improvement and development. Here is to another month of the same.
24th August 2010
Some very cute pics as the twins are reunited for their one month birthday!
We were told today they may be in an open shared cot by the beginning of next week.
William is ready we are just holding on hoping that Esther will catch up.
25th August 2010
Got the go ahead from the hospital today to start bringing in bedding and clothes as all being well the twins will be in a shared open cont by Monday which is very exciting. They can also have small musical toys in their cot and a cot mobile. Also soft books!
They both started on Lo Flo nasal cannula oxygen today. It is tiny prongs in their nose to provide a continuous flow of oxygen rather than having it pumped into their incubator. Once in an open cot and off CPAP we will be moved into the next nursery to start preparing for home, though we know it is still a long way off. The unit is getting very busy and the room we are in has become an overspill for NICU, very busy and noisy!
27th August 2010
Dear Granny and Grandad Henley, Nanny and Grandad Nairn
Mummy has left her camera at the hospital but we thought you would like to know a few things that have happened today.
First of all William has been moved into the twin cot. It has a space in it ready for Esther when she is a bit bigger and able to regulate her own temperature. William looks very cute but also quite lonely but Esther is allowed to visit every day.
Secondly we have both tried breastfeeding today. William had a few licks and a suck but startled himself when he got a mouthful of milk which he soon spat out! Esther latched on and was sucking away quite contentedly. She cannot however swallow and so spat all of the milk out down Mummy’s top!
Thirdly and finally, the eye doctor came today and we have both been given the all clear for now. We will be tested again in 2 weeks time but at the moment there is no damage to our eyes that can be seen.
The eye examination has left us exhausted and very sensitive to light so Mummy and Daddy have come home to get busy in the house.
We are all looking forward to taking more big steps tomorrow.
Lots of love Esther and William x x x x
7th September 2010
Both babies are doing really well off their oxygen
William will have an ECG in the next week or so to investigate his heart murmur but the doctor is not too worried yet
Both babies will have their second eye examination on Thursday or Friday when we are also hoping to move to Nursery 3, another step toward the door and home!
21st September 2010
We are very pleased to let you know that we have just survived our first night at home as a family of four!
We were taken a bit by surprise yesterday when the doctors told us that Esther and William were ready for home.
Along with congratulations the hospital staff have also given us some quite strict and specific instructions for now we are home as the babies were so premature and they do not want to see us back in hospital. They recommended that we let all friends and family know from the start so that everyone can help the babies grow stronger.
No visitors to the house until the babies reach term
Because the babies are classed as having Chronic Lung Disease they are very susceptible to any and all forms of cold, flu etc … as it is possible for these viruses to travel on hands, clothing, bags etc without people knowing the chances of these infections being brought into the house increases dramatically with each visitor. In October the babies will be given the first of 5 injections to protect them from RSV the main virus that underlines all coughs and colds etc they will then be able to start meeting their friends and family. They will still be at high risk and so we will be keeping visitors to a minimum throughout the winter.
If and when you do visit we have been recommended to follow the same rules that the hospital apply:
Don’t come if you feel ill in any way
Always wash your hands when you arrive
Always wash hands before touching the babies
Don’t come in clothes that have been worn to schools or toddler groups etc …
Talk in calm, quiet voices around the babies
Sorry these rules all sound very strict and draconian
It has been a long journey to get the babies this far
We really do not want to spend any more time in hospital so we are going to be a bit protective and healthily paranoid at least until the cold and flu season is over.
Please bear with us as I am sure you will.
Though we are out of the building we are not yet in the clear
William will have a heart consultation in December and both babies will attend a Neuro Development clinic for the next two years. We also are still undergoing screening for their eyes over the next few months. This is to check that the babies are continuing to develop healthily. It was very emotional leaving the hospital yesterday after 59 long days but we are so glad to be home.
Thank you so much for all your cards, gifts, help and support so far.
Lots of love Jennie, David, Esther and William
PS) Please do not ring the house phone as we are catching sleep whenever we can!! We will regularly check emails and mobiles x
21st September 2010
We just had an ambulance out for Esther. She breathed in some medicine and was forgetting to breathe! She went all still and lifeless and we panicked. She is fine now but was very scary. They look so small in our house.
25th September 2010
David will make a much better, more polished version of this in the weeks to come but this is my try.
In celebration of our homecoming and a closure of the first chapter of Esther and William’s lives.
It has really helped to look back at how far they have come.