27+3 twins - our story so far

[HENLEY2B]

nairnnicujournal.wordpress.com

Please read my blog documenting the journey of our twins Esther and William through NICU and SCBU.

They were born on 24th July 2010 at 27 weeks and 3 days. They are now 4 weeks and 1 day old.

I am writing this diary for them but also I hope that it will help people to understand what we are going through and what life is like with babies in special care.

I hope that someone finds it helpful x

[bearcrumble]

Thank you so much for posting this. I'm sure it will be of massive help in the future to parents of preemies.

Congratulations on the birth of Esther and William (lovely names) - but sorry that the circumstances were not what anyone would have wished for.

My little boy was born in Feb - a lot less premature than your two - at 35 weeks by elective caesarian because of IUGR/pre eclampsia weighing just under 2 kilos.

What hospital are yours at? How are you feeling today?

xx

[HENLEY2B]

Hi
We are at William Harvey in Ashford in Kent.
Have had some lovely evening cuddles with our two tonight.
Esther is very anaemic and may have her first blood transfusion tomorrow. William had one a few weeks ago and has not looked back so I hope it will have the same effect for Esther.
There is an infection on our ward at the moment so I am terrified that one of our babies may catch it.
I am confident in the staff though, they are brilliant.
Hope your little boy is well x

[bethylou]

Wow! Congratulations to you both on the birth of your little fighters. I will watch this thread and your blog with interest to see how they and you are getting on. How lovely of you to share it with us. .

I have been fortunate enough to have two boys born at term but have a friend who has recently had a very premature baby so your advice on what to do and say is great. Good luck for the journey that lies ahead of you all. x

[bearcrumble]

Oh good luck with Esther's transfusion if she has it (sounds like a good idea). So sorry about the worry of the infection on the ward - what a nightmare. Keeping my fingers crossed that it doesn't spread. I know all the neonatal nurses drum good handwashing technique into the parents.

Luckily Alex didn't have to stay more than a few hours in the NICU - he was on the high dependency ward for a couple of days and then what I called the "fattening up room" for a week and a half.

We were at St Helier in Sutton (having been transferred out from King's in utero).

He's totally fine now apart from mild anaemia - he caught up from the 9th to the 50th centile really fast but as they said on another thread - any routine that the hospital imposes goes when you get home because they wake up more often and want to feed A LOT.

My friend in the states had twin boys at 30 weeks and they are doing so well now, you'd never know they were premature.

I can't imagine how tough it is for you and your husband - I felt like I was cracking up and my situation was a lot less extreme than yours. I rememer alternating between being so happy and proud that I had such a beautiful little baby and then being in teaful hysterics really worried that something would happen to him - and the separation was horrible. I'd stare at photos of him constantly when I couldn't be on the ward. Oh, and guilt that I couldn't carry/grow him properly - it turned out when I had the caesarian that I have a bicornuate uterus which caused the problems.

It made me more anxious about his health after we got home and of other people holding him until he was about 4 months. It's not an issue now.

You are allowed to grieve for not having had the birth/early days that you'd expected - any feelings are what they are. There's no right or wrong way to feel.

It's funny how alien the SCBU is at first but how quickly you become habituated to it.

[Galena]

My DD was born at 27+4 a long 16 months ago. The NICU life is a real roller coaster, but keeping a diary is fantastic and will help you to think through things later on. Do come an join us on the Bliss Message Board if you haven't already.

[Zhen]

Thank you for sharing this. My cousin's wife had her baby, at 29 weeks, yesterday. I will share your blog with her.

[mumbar]

thankyou for posting this. My cousins GF had her baby at 23+6 6 weeks and 5 days ago. I will pass this blog info on to her.

[HENLEY2B]

Hi
Thank you for all your comments. We are now home!! The twins will be 11 weeks old on Saturday, 38+1 corrected.
We are still getting used to each other which is wonderful but exhausting.
Where is the best place to get advice now?

[hildathebuilder]

Glad to hear they are home.

As for where to get advice do you have a community neonatal team, we did and they were great, and still answer phone calls now.

Also is there a local bliss support group?

Failining all of that the bliss messageboards are good for getting advice.

Good luck

[HENLEY2B]

Hi
We do not have a neonatal community team or a bliss group. Have also been advised not to mix with other children as risk of infection so pretty lonely really.
I do go on the Bliss Boards and am now enjoying Mumsnet too.

[hildathebuilder]

It always puzzles me why some areas have such great support (here being one of them) and others seemingly nothing.

As for not mixing with other children I always thought it was a personal choice, and we did mix with others from pretty soon after DS came home. DS was pretty healthy though I know a few friends who also did mix when their LOs came home on oxygen. The difficulty typically being the logistics of taking a baby out with an oxygen tank.

I was a bit more careful and refsued to go anywhere when I knew that there was someone who was ill, and carry alcohol gel everywhere but that was about it.

DS got a cold at 5 months, and fought it off fairly well, that's it so far. Also DH is a lecturer so we have alomst no chance of him not coing home with freshers flu and all the other infections that go through universities.

[3littlebears]

Hi. Just had to add something re RSV. DS3 was born at 28 weeks and let home at 37 weeks. However, it was winter and for 3 or 4 months he had a monthly injection to ward off Rsv. I know it cost the nhs trust £200+ per shot but Ds3, who is now 3, is invincible and never gets colds or chest infections, unlike his big brothers! Can't remember the name of the drug at the moment, but creates bionic babies!!

[WillbeanChariot]

It's palivizumab (sp?). DS had it because he was on oxygen. I think they ration it because of the cost!

[slinkyfish]

My 2 had Palivisumab too for 6 months over Winter. It wont stop them getting RSV but symptoms should be less severe. We were warned we'd be in hospital for most of their first year with chest problems (one of them has Chronic Lung Disease)but we never went back and they are now 2 1/2. If you can get this vaccine then do push for it as I swear it helped prevent serious RSV infection

[slinkyfish]

Just to add BLISS helpline is great as are their support groups and messageboard. Also does your NICU have any support groups linked to it? xx