Losing hope

[littlefressia]

Hi everyone

I am fairly new to MN and new to this forum- I hope you may be able to help me. Sorry this is a really long story.

I am mum to 8 month old identical twin girls- born by emergency C section in June. I had a horribly stressful pregnancy twin B was smaller from the dating scan and they thought we had twin to twin transfusion syndrome. The doctors were hugely pessimistic about the outcome and we were told bluntly at 15 weeks we would not have two babies at the end of the pregnancy. I was scanned weekly from then onwards and they decided we didn't have twin to twin but unequal placenta sharing. I was signed off work as it was so stressful.

The babies were born weighing 2.7kg and 1.6kg and twin B was taken to NICU immediately to be monitored and tube fed. Twin A was also tube fed for 4 weeks until breast feeding was established.

At 7 days old Twin B was diagnosed with coarctation of aorta (a severe narrowing of main artery leading out of heart) and a hole in her heart. She had major surgery a week later to correct the narrowing, which went well. We all spent a further 3 and a half weeks in hospital, trying to establish feeding. She came home bottle feeding (very small amounts, lots of dribbling) and I tried to breast feed once each day, but she never got the hang of it.
She has such small amounts of milk and that has never really improved- she has special high energy milk as her volumes are so small. We introduced solids early on the advice of the dietitian and she seemed to enjoy them intially, but now she needs loads of distraction and barely opens her mouth.

She is 6 pounds lighter than her sister and is not even on the bottom centile for weight. I kept hoping things would improve with her feeding, but it doesn't appear that way.

To top it all off, she also has reflux which interfered with her feeding massively until the docs worked out what was going on. She does gain weight, but it's incredibly slow (about a pound a month- she weighs 11 and a half pounds now).

None of this is what I had expected or wanted. I have really been to the depths of despair over the past year. She is a lovely baby with a really cheerful temperament, but I feel I can't enjoy them as each day is such a struggle.

I just really need for things to be a bit easier, the feeding and her weight is just all-consuming and so worrying.

Sorry for the depressing post- just needed to share I guess.

Thanks for reading.

Someone will be along with proper advice in a moment, but in the meantime I wanted you to have a hug ((()))- you have been under such strain, for so long, no wonder you feel used up.

I don't have any words of wisdom other than you are doing a very stressful job and I'm glad you felt able to post. Do you have local support?

Dear Littlefressia,
I didn't want you to go unanswered. You poor love, you have really been through the mill, haven't you? I have twin boys, now nearly 18 months old, and though I didn't have the same problems re: being hospitalised for a heart condition, DT2 was a very poor feeder, lighter than his brother at birth and a very refluxy baby. He too bumped along below the lowest centile until after 6 months old.

I can only say, you have done brilliantly to get this far - twins are so hard, even without the additional issues you have had to deal with. Reassure yourself that although slow, she is putting on weight, and is getting stronger every day. Perhaps soon she'll find some favourite foods and start piling on the weight a bit faster - that is what happened with our DT2 - at 6 months he was nearly 2 kilos lighter than his brother, by a year they were almost the same weight and wearing the same sized clothes.

Things will get easier. For us one year was a huge milestone. Since then things have been getting better and better. I hope the same happens for you all. Hang in there. You are doing a marvellous job, and, as you say, your little girl is cheerful and happy.

Get a break if you can to catch up on sleep and recharge your own batteries. You need it, I am sure.

I am sorry I have no helpful advice for you. However, I am a healthy women in my mid thirties who has given birth to 2 healthy children.
I was born with a heart condition, was an absolutely terrible feeder. At 1 year I would only eat one flavour of baby food (for 6 month olds). I was never on the centile growth charts and weighed only 12 lbs at a year old.
I am now of normal height and weight.

I have ONE 8 month old with no major problems and it is tough! Can't begin to imagine how much harder it is for you - sorry, hope that doesn't sound too glib.

ds has been putting things in his mouth for ages but we have only really noticed in the last week that he seems to be actually swallowing anything. I think it takes a while for some to get the hang of food. Hopefully she'll get more interested soon.

Keep coming back, MN is great for advice and distraction x

Hi Littlefresia,
I couldn't read your post and not answer. I have no personal experience of having twins (athough my sister does have twins) but I do have experience of things not going how you thought they would. My first DD was born with a condition that meant she couldn't swallow and when she was born 5 weeks early she needed emergency surgery to repair her oesophagus and link to her lungs. Its a totally different experience to you but I can empathise with the daily struggle of feeding and trying to get a good weight gain. About a year after my DD was born someone shared with me an essay called "Welcome to Holland" it summed up exactly how I had been feeling and I found it a great help. I've posted it at the end of my post. Good luck and I hope this helps you.

When you?re going to have a baby, it?s like planning a fabulous vacation trip to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum, the Sistine Chapel, Gondolas. You may learn some handy phrases in Italian. It?s all very exciting. After several months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, ?Welcome to Holland!? ?Holland?? you say. ?What do you mean, Holland? I signed up for Italy. I?m supposed to be in Italy. All my life I?ve dreamed of going to Italy.? But there?s been a change in the flight plan. They?ve landed in Holland and there you must stay. The important thing is that they haven?t taken you to a horrible, disgusting, filthy place full of pestilence, famine, and disease. It?s just a different place. So, you must go out and buy new guidebooks. And you must learn a whole new language. And you will meet a whole new group of people you would never have met. It?s just a different place. It?s slower paced than Italy, less flashy than Italy. But after you?ve been there for a while and you catch your breath, you look around. You begin to notice that Holland has windmills. Holland has tulips. And Holland even has Rembrandts. But everyone you know is busy coming and going from Italy, and they?re all bragging about what a wonderful time they had there. And for the rest of your life you will say, ?Yes, that?s where I was supposed to go. That?s what I had planned.? And the pain of that experience will never, ever, ever, go away. The loss of that dream is a very significant loss. But if you spend your life mourning the fact that you didn?t get to Italy, you may never be free to enjoy the very special, the very lovely things about Holland.

Hi LittleFreesia, like everyone else I just wanted to say that having twins is hard enough without any extra health problems on top! So don't be hard on yourself - you sound like you are doing really well so far.

My 2 boys were born a little early and spent some time in SCBU both with feeding problems. Although D's feeding took off eventually, and he came off the tube, they were talking about sending J home still tube feeding! Eventually a nice NICU nurse got in touch with the cleft palate nurse and they sorted me out with a soft sided bottle which really helped. They didn't actually spot that he had a cleft palate until much later ( a fortnight in SCBU with feeding problems and they didn't even think to look) and since he has had his operation his feeding is much better, both milk and solids.

Prior to his operation, his feeding was a nightmare, and like you say, all consuming. I felt terrible as D was always passed on to someone else to feed whilst DH and I struggled with J. It was unfair to D as he never got the time he needed. And J (like your wee girl) also had terrible reflux which didn't help. I can really feel how difficult it must be for you.

However in my case it has got easier. That is mostly due to J's operation. But they get easier as they get older too. Well at least a different type of difficult.

Have you spoken to many people about your girl's feeding problems? Asked to be refered to a specialist? It could well be that she has a minor problem in her throat or palate that could be sorted and would help? J's cleft palate was completely missed.
And for yourself have you talked to the dr about antidepressants? I know a lot of people don't like to talk about them, but I've found almost every second mother is on them! And they really help - well they did with me. They just take the edge off things and make it all seem less all consuming.

Anyway, I've rambled enough. Please come and chat (or mostly moan is what we do) with us on the insane... thread. We are a lovely bunch really

Hi, my DD weighed 13lbs at the same age so not loads bigger and is usually below the bottom line. The main problem was reflux so when she did eat (would skip meals a lot) she would throw it up again anyway. Mine didn't have all the health problems that yours did and was only a little bit early but stopped growing in the womb some weeks before.

When she was 2 1/2 she was diagnosed with a dairy intolerance which once dealt with stopped the vomiting completely. She is still small and off the bottom of the chart but she is 5 now and at school and perfectly fine and healthy.

The whole situation was incredibly stressful (I had other things, horrendous things, going on at the same time and it was all too much). I found that I had to stop stressing about the eating as my stressing about it only had a negative impact so things needed to change.

Not sure if this helps.

Hi all

Thank you so much for your kindness in your responses- I have been crying while reading them. It does help to know that I am not alone.

We are really lucky in that both my parents and my in laws live nearby and are very supportive, but naturally they can't be here every day. Until recently she has been weighed weekly under the care of the community neonatal team, but we have just been discharged to the care of the HV and she will now be weighed monthly.

The twins were a month early so they are both a bit behind with milestones and generally Twin B is a few weeks behind her sister, but they are both rolling over, sitting up etc.

We thought her feeding was starting to improve just after Christmas (once the reflux meds kicked in), but for some reason that didn't continue. No two days with her feeding are ever the same.

I am having counselling which is helpful, so haven't really thought about anti depressants to be honest. I really believe that if her feeding improved, everything would just be so much easier to cope with.

It's good you had family around, I had no one (apart from husband) and it was very hard. Try not too put too much on the eating thing. I know how stressful that is but they will eat when ready (assuming there's no physical problem). I found with mine that she became stressed about meal times as well and the effects of that lasted years.

What reflux meds is she on? J was on infant gaviscon originally but it was rubbish for him. Now he's on domperidone and ranitidine (think thats the names, I'm not at home to check). One helps neutralise the stomach acid and the other speeds the contents of his stomach through into his intestine so his stomach is emptier quicker and hence there is nothing to bring up. Makes him hungier too as his stomach is empty

Thanks for your replies LL and gg.we are giving them home made purees; fish,meat,lentils,veg loads of bananas and fromage frais.have tried them both with finger food- toast rice cakes etc but they don't seem to be able to manage them.lots of choking.would be interested in some blw ideas though?

Gg she is on ranitidine for reflux plus a thickening powder to add to her milk. Thanks again for being there.

Glad to be of support. Maybe mention the domperidone to the dr and see if it helps, it's the one that speeds stuff through the stomach

Thanks for the advice LL- they both have 2 bottom teeth and Twin A has one top tooth. Maybe I need to be a bit more adventurous.

I know what you are saying about trying not to worry, but it's so hard not to when she is so small anyway and giving her even 50mls of milk is a real struggle. There has not been even one day since she has been born when I have not worried or stressed about how much she has had. I really thought solids would be her salvation, but it seems that's not the case :-( Sometimes I wonder if she just not hungry.

Thanks again for your help.

Hi littlefressia are you concerned about only being able to have monthly weighings?

In my area there are baby clinics at various surgeries, and I could attend whichever one I wanted, so I could get the twins weighed whenever I wanted to.

Please ask your HV about more frequent weighings, she can probably recommend a number of baby clinics, or she may even be willing to visit you more often and weigh at home (mine was absolutely lovely and very helpful with any extra support if I needed it).

As everyone else has said, you are doing a great job, the early months with twins are tough, even without any added health problems. Please come on and talk whenever you need some support - and if there's no-one replying here (it's one of the quieter topics) post in Chat - there's always someone in there to listen and sympathise.

Forgot to say, we had lots of choking and gagging too, it definitely upset me more than it did them!

I found risotto and rice pudding good - I used to blend half of it, and then mix the other half in unblended, so it was a good balance of easy to eat puree and lumpy rice to get them to chew.

Rice cakes and toast were the worst for making DTS gag, Heinz Biscotti (just like rich tea biscuits) were much better as they went soft when they were chewed, so were easy to swallow.

Also the Organix carrot sticks, sweetcorn rings etc are good, they are maize so again soften nicely when they're in the baby's mouth.

Gagging is different from choking - when they splutter and hoke things up it is them learning to move food around in their mouths. Try and sit on your hands and let them get on with it, not always easy I know! Make sure you know what to do if the airway does become blocked - might give you a bit more confidence.

Also if you are worried about choking don't give hard foods eg raw carrot or raw apple, make sure they are always sitting fully upright. Roasting, grilling or frying veg (even some fruit) will give a nice surface to grip onto and an inside soft enough to squish into their mouth.

If they are having trouble picking up slippery fruit and veg, get a crinkle cutter (got mine for a quid on Amazon). Makes stuff like mango, melon etc so much easier. Ds also found green beans, asparagus and breadsticks easiest to begin picking up. They need to practice. Now he has a tooth he likes to puncture slices of pepper straight from the fridge.

They need to watch you picking up food too, so eat when they are eating (if that's possible with twins!).

I am a control freak so BLW has really helped me back off, stress less and give ds control of how he eats. And he is (sort of) getting it now. You can still do a bit of spooning too if they let you!

Thanks for your advice about BLW. I did give Twin B some strips of cheese yesterday and she did seem to enjoy it (though she didn't have much) but today she choked on them.
Got to keep trying I guess!

OpheliaBumps I am not worried about having monthly weights- to be honest, it will be a bit of a relief as she has been weighed weekly til Christmas and I found it really stressful. Having her weighed more infrequently makes me feel slightly more normal. :-)

Will keep posting and asking for your advice.

Thanks so much.
x

Little Freesia, I'm here to offer you loads of hope, as I could have written your post a few years ago. My twin2 had lots of feeding problems, hole in the heart, hydrocephalus, was off the centiles, had very severe reflux, never slept and cried 14 hours day. I thought it would never end.

To be honest, it IS tough, very tough when one baby doesn't like eating. But this phase will go. My son was very weak until he started school. he began reception in age 3 trousers which were taken up 6 inches because he was so short (they didn't do age 2 school trousers.) He was bald as a newborn too. I felt so inadequate to help him. Now he's 8 and in age 10 trousers, bursting with life and health and cute and funny. Having been bottom of the class for the first couple of years, he's now near the top.

I'm sure all this sounds like it's not applicable to you in your circumstances but I just want to reassure you, it can change. It can get brilliant. She will one day eat and enjoy food. She will one day catch up. You will be a normal, happy family. It's just that with twins, when they're delicate, the first years are very different from what you anticipate. If you're merely coping, you're a supermum. If you're not coping, that;s understandable in the circumstances. You sound like a great mum who's doing a great job.

You mention not being able to enjoy them. We had this problem. The best solutions for us were:
Take them out one on one. I couldn't believe how easy it was just to have one baby. I remember a day on Oxford Street feeling like the smuggest, best mum in the world, because my one baby was such a peach to manage, after trying to cope with two every day.
Also, we got out of the house a lot. I'd wrap them up in cosy blankets and walk along the river or in parks for hours. The buggy seemed to soothe them. Physical activities were limited - but we went to a music group, as much for me as for them, and we all loved it.
Also, I didn't care what sort of day we'd had, I made it a mission to get us all giggling at least 3 times a day, and to play with them for half an hour before tea. Sometimes it was just going through the emotions of enjoying them - probably a lot of the time, that's what is was, but it means I do have good memories, and they had chuckles and we can chat about what we used to do when they were small. Sort of bank of good memories. It was an effort, but worth it. My strongest memories of the early days are from when we took the babies out and did things with them, individually or together.

Convince yourself it will get easier. Convince yourself there are loads of bright and gorgeous times are ahead. Accept it's tough and horrible now and give yourselves as many small breaks and treats as you can.

One thing I can say is, once the tough times began to pass, we seemed to enjoy ordinary everyday living more than anyone else I know, and that's never stopped. Having a tough start means you truly appreciate it when the load lessens.

Meantime, I hope you get lots of help. Try not to neglect yourself. I did - I stopped eating and got very stressed. If I had that time again I'd take really good care of my own health and moods. Get support wherever you can. Try to have a night out once a week (not easy I know.) Take time to find what you do best as a family - we lived outdoors as I hated being stuck at home, but another friend lived in PJs for two years with CBeebies on full blast. Doesn't matter. Whatever keeps you calm. You're the one who needs to keep her energy reserves in place. Whatever works for you is fine. Don't let anyone ever judge you or tell you how to do it better, not HVs or docs or anyone, if they haven't been in your position. They don't know. Textbook advice doesn't ake any provision for sickly twins.

Do pester docs for medication. Is she on Gaviscon? Ranitidine? Zantac? They helped us so much.

Another thing I did was give up on meal times. They took hours and were so stressful. It wasn't ideal to do this - my two still don't have great table manners, compared with the rest of their manners. But it was so much more relaxing to just chop up lots of healthy bite-sized food once a day and then post it into his mouth when he was distracted. He ate far more that way, than if we sat and tried to give food at one sitting. One thing i do wish is that I'd given more attention at food time to twin 1 who ate well.

Sending you lots of love and support and admiration. I know how it feels. It was the toughest time of my life but we came through happier, stronger, and I'm sure you will too.

Hi menagerie

I have not been on MN for ages so I have only just seen your post. Thanks so much for writing- it means a lot to me to think there is hope out there. I was at a terribly low point when I wrote that original post (there seem to be lots of low points), but generally things are better.

We do go out for walks and to the supermarket a lot and go to two classes a week which is great for them and for me. The feeding is still an issue- Twin 2 has now decided she does not want to eat breakfast or puddings (no idea why), but has two main courses each day. She is still tiny- only 12 lb 2 at 9 months- but is almost the same length as her sister, but obviously much thinner. But she is lively, happy, loving and a delight to be with, other than when feeding her!

Reading your post has really made me feel that I am not alone and that I can keep hoping for things to improve with her. I feel sometimes that I am surrounded by people who had normal pregnancies and normal babies who like feeding, and that no one knows what it's like for me, so to hear your story has really made a difference.

Will keep posting back with updates.

Thanks again.
x

It took one of my twins until he was nine or ten months old before he would willingly put food in his mouth and chew on it. Before that, I got excited if he even tasted anything and decided he didn't like it, before taking it out of his mouth. And as for spoon-feeding, he just used to clamp his mouth shut and turn away.

But then, at ten months, he suddenly started eating! Apparently the key for this one, not necessarily for any other child, was pasta with mild curry sauce... Suddenly a light-bulb went on in his head, and he realised things that didn't taste like milk could be nice, I think. Then he realised that it helped with his hungry feeling, just like milk did.