I've come to join you

[HCB]

Our identical twin boys were born last week at 27+4 weeks, Lucas weighing 1072g (about 2lb 6oz) and Morgan weighing 810g (about 1lb 13oz). I went into spontaneous labour, there doesn't seem to be any reason for it and neither baby was in any distress throughout. Thankfully I was able to give birth naturally to them both.

They had been diagnosed with severe twin to twin transfusion syndrome at 20 weeks when one of the boys measured 3 weeks behind the other and was classed as a 'stuck' twin as he had been pushed out of the way under my ribs and had virtually no amniotic fluid so wasn't moving much. I had a laser procedure done the same day and everything had been going well with both growing and the little one even catching up a bit. They have already come through so much and now they're having to be little fighters again. We had only just had a scan a few days before and were looking at being able to reach 34 weeks but it didn't quite work like that!

Both of the boys have been doing so well until the last couple of days. Morgan (the smaller one) was on cpap within a day or two although Lucas was having trouble with a sticky lung but then suddenly got through it and got onto cpap. Both are having time off cpap twice a day, Morgan generally managing about 3 hours at a time and Lucas 1 or 2 hours. They had both lost more weight than they would have liked, going down to 810g and 620g but because they were doing a lot of wriggling and using energy breathing they weren't concerned. They have now started to put a small amount of weight back on, which we're thankful for.

However, in the last couple of days Lucas has been vomiting his feeds up (and some how still managing to put weight on!) and there were concerns about what was causing this. Today he had his feeds stopped and had a chest and abdominal x-ray but they showed that there wasn't any infection or anything so they started him back on feeds. Both boys just didn't seem like themselves when I went in and after seeing how far they had already come in such a short time I found that quite hard to take as there seemed to be something wrong but I didn't know what and couldn't do anything about it.

Unfortunately, expressing isn't really happening as it seems my milk hasn't come in so they have had to be put on formula, which is probably what they're reacting to. I wish I could do more for them but I'm feeling quite helpless at the moment. I did get to do my first bit of kangaroo care with Lucas today, though. I couldn't believe it when I got asked if I wanted to and was so gobsmacked I couldn't even get a yes out!

I'm trying to stay positive but the feeding thing is getting me down a bit as that seems to be the key to things at the moment and something I could and should be able to help with.

 

[Sakura-chan]

I am new to this section to and also gave birth last week (Jan 6th) although just to one baby and I was 31 weeks 4 days.

I can totally understand the feeding thing getting you down and feeling completely helpless. I have found the whole thing getting me down- I definitely have good and bad days. I am finding it very hard to balance my time between the NICU and with my one year old son as I feel like I am abandoning each of my children every single day by leaving my son with his grandparents and by leaving my second son in the NICU (I can only visit him for an hour each day due to commute and also NICU rules)

Welcome and congratulations on the birth of your twins- hope they thrive. We will get through this!

 

[AP]

Hey hunny, ive already posted in third tri but a massive congratulations and theres a fab lot here that can help with advice on your NICU journey xxxxx

 

[mylittlebud1]

HI, Congrats on your babies.

I gave birth to Evie on 22.12.10 at 27 + 2 days weighing 2lb 8oz. She was breathing on her own within days but due to her using so much energy to duo this she went down to 2 lb 1oz. She got extremely tired so she has since been on pressure assisted cpap.

She had a 5 day spell of de-satting and bardy's (extreme drop in heart rate) where they had to resusitate her, which was very scary, but we're told this is normal. There not meant to be here yet so they simply forget to breth sometimes.

To top all that off i'm told today that her belly is slightly swollen so she is on anti-biotics and her feeds have stopped as she may have NEC (gut problem) so they need to treat that.

Its such scary time with ups and downs and i'm yet to see the light at the end of the tunnel but the staff in NICU are amzing so i'm just hoping that she pulls through everything.

Wish you all the best during this difficult time. xxxx

 

[HCB]

Thanks to you both.

We are lucky with our NICU in that parents have access whenever they want and we also live only a 5 minute drive away. Never thought that would be such a bonus when we bought the house 6 years ago! They have restricted other visitors, though, because of the bugs going around so grandparents and siblings of children in there can't visit at the moment.

I had a bit of a cry last night when i suddenly realised how much I missed them. My husband was very comforting and said he missed them too but I had to explain that I was missing them from my tummy (I do miss them not being at home too, of course). Because of the complications I had only just started to relax and begin to think that I would get to have two healthy babies and enjoy the pregnancy only for it all to be taken away from me 3 days later.

 

[HCB]

Thanks to you too MyLittleBud! Our posts crossed.

 

[AP]

Thanks to you both.

We are lucky with our NICU in that parents have access whenever they want and we also live only a 5 minute drive away. Never thought that would be such a bonus when we bought the house 6 years ago! They have restricted other visitors, though, because of the bugs going around so grandparents and siblings of children in there can't visit at the moment.

I had a bit of a cry last night when i suddenly realised how much I missed them. My husband was very comforting and said he missed them too but I had to explain that I was missing them from my tummy (I do miss them not being at home too, of course). Because of the complications I had only just started to relax and begin to think that I would get to have two healthy babies and enjoy the pregnancy only for it all to be taken away from me 3 days later.

You might find the ban on visitors a blessing when you look back hunny. A few of us regret visitors in the early days, too much time was spent letting visitors in and keeping them happy in our case. Visitors tend to ask too many questions too! Take time to get yourself in the surroundings and get to grips with what's happened.

Going home without them is hard. I found night time hard, it was when I felt Alex kick the most at night and now the was nothing. Rest assured you have the advantage over most preemie mums that they are only 5 mins away and you have freedom to see them whenever

Third trimester is over rated anyway

 

[Foogirl]

Congratulations. And welcome to our little corner.

Your post rang a bell in my mind. Abby had formula twice in NNICU and was sick with it. They refused to believe the formula was the problem and made all sorts of excuses why it had happned. We found out (months and months later) she has a dairy intolerance. Ask the unit to consider trying a milk free formula to see if they tolerate it better. Are you continuing with expressing?

 

[cat81]

Congratulations on your little ones. They sound like real little fighters. I really hope that you get these problems sorted out soon. What you are feeling is completely natural and everyone here will tell you that NICU is a real rollercoaster of ups and downs. My LO is nearly 6 months now and is so happy and healthy that I cant believe I was going through it all just a few months ago. I know he wasnt quite as early as your twins but what I am trying to say is that before you know it you will have your boys home where they belong. Stay strong and we are here if you need us.

 

[Foogirl]

Third trimester is over rated anyway

I think I'm going to have this printed on t-shirts for folk to wear to the support group. What a great tagline for premature birth!

 

[raquel1980]

Hiya hun, I remember all too well everything you describe - it sounds like you've had a really tough few months and your babies early arrival means that the tough times will continue for a little while longer but they are doing so fantastically already (to be having time off CPAP already is fab - my twins were born at 34 weeks and Hannah was on CPAP for 3 weeks so your 2 being 27 weeks and already doing this is great).


on the feeding, this happened about 3 times with Hannah, they would stop the feeds and it would always feel like we were back to square one but suddenly she was just able to start tolerating it which was such a great feeling. Are you still trying to express? My milk took quite a few days to come in and I remember those early days feeling so helpless and the nurses didn't help as they kept asking if I had any milk yet! I remember getting just a couple of drops each time for ages and being distraught that I couldn't do anymore. Just try not to put too much pressure on yourself, you are doing your very very best and that's all you can do. Try and get lots of rest and eat well as that will help your milk supply if your going to continue trying.

Like one of the other girls said, I found night time the worst time as my two would kick a lot then too (wow, still makes me well up just thinking about it!). And don't worry about the crying, I cried pretty much every day for the first few weeks, just let it all out.

Take care, they are a great group here and REALLY helped me in those first few weeks xx

 

[HCB]

You might find the ban on visitors a blessing when you look back hunny. A few of us regret visitors in the early days, too much time was spent letting visitors in and keeping them happy in our case. Visitors tend to ask too many questions too! Take time to get yourself in the surroundings and get to grips with what's happened.

Going home without them is hard. I found night time hard, it was when I felt Alex kick the most at night and now the was nothing. Rest assured you have the advantage over most preemie mums that they are only 5 mins away and you have freedom to see them whenever

Third trimester is over rated anyway

We already think it's a blessing that we don't have to deal with other visitors too! It's hard enough us having a schedule and seeing the boys let alone accommodating visitors. Although because of this people keep asking for photos and are getting impatient. Don't they realise sending out photos to all and sundry isn't exactly top of our priority list??!!

 

[HCB]

Congratulations. And welcome to our little corner.

Your post rang a bell in my mind. Abby had formula twice in NNICU and was sick with it. They refused to believe the formula was the problem and made all sorts of excuses why it had happned. We found out (months and months later) she has a dairy intolerance. Ask the unit to consider trying a milk free formula to see if they tolerate it better. Are you continuing with expressing?

Thankfully our NICU has thought it must be the formula and have changed them to one that is already part digested (god knows how they do that) and both are now keeping it down and are having the amount they are given increased regularly. It also means they have started to put weight back on now and the bigger twin is virtually back to the weight he was when he was born.

Despite it being hard I am still expressing or at least trying because I want it to work. I have now heard of a couple of reasons why it hasn't kicked in yet and also one of the doctors on the baby ward will prescribe domperidone so I will probably have a word with them. However, the amount I have been expressing has increased over the last day. Still not a huge amount but going in the right direction so there may still be hope yet.

 

[HCB]

Hiya hun, I remember all too well everything you describe - it sounds like you've had a really tough few months and your babies early arrival means that the tough times will continue for a little while longer but they are doing so fantastically already (to be having time off CPAP already is fab - my twins were born at 34 weeks and Hannah was on CPAP for 3 weeks so your 2 being 27 weeks and already doing this is great).


on the feeding, this happened about 3 times with Hannah, they would stop the feeds and it would always feel like we were back to square one but suddenly she was just able to start tolerating it which was such a great feeling. Are you still trying to express? My milk took quite a few days to come in and I remember those early days feeling so helpless and the nurses didn't help as they kept asking if I had any milk yet! I remember getting just a couple of drops each time for ages and being distraught that I couldn't do anymore. Just try not to put too much pressure on yourself, you are doing your very very best and that's all you can do. Try and get lots of rest and eat well as that will help your milk supply if your going to continue trying.

Like one of the other girls said, I found night time the worst time as my two would kick a lot then too (wow, still makes me well up just thinking about it!). And don't worry about the crying, I cried pretty much every day for the first few weeks, just let it all out.

Take care, they are a great group here and REALLY helped me in those first few weeks xx

Thanks. They have stopped the feed a couple of times with our smaller one in case of infection but fingers crossed he is now tolerating the new formula he has been put on and will start to put more weight on like his brother.

It has been nearly two weeks since I had them and I still don't think my milk has come in as such but it has increased a bit in the last day. I'm trying to drink lots (even more than I already was) and eat more. I have also relaxed a bit more about it over the last few days so I'm hoping that all of this is now helping.