Hi I’m new to the world of twins and TOF and wondered if anyone else has been in the same situation?
Had twin boys by c-section on 1st Feb but within an hour or so had one of the twins whisked away because of breathing difficulties.Just thought he needed his lungs clearing out because of the c-section and that he would be back with me shortly. So it came as a bit of a shock when the dr said Luke needed a major operation as his windpipe & foodpipe were joined up - that the best place to have that done was Leicester & that Luke would be transferred there asap. So I only had a few minutes with Luke that first day and didn’t get to hold him properly until a week later when he was out of neo natal care & in high dependency. He has been in so many different wards now and still hasn’t been home that I’m beginning to wonder if he really is my child! Everything seems to be a blur and I find it hard -wanting to have some normality at home with his brother Joshua to counterbalance the stress of dealing with so many different nurses looking after Luke & not really knowing what’s going on & what’s holding Luke back.
I haven’t had twins but I had a simular experiance when I had Devin, just turned 10mths. I had a natural birth in Taupo, NZ. I got to hold Devin for half an hour before I was told that I had to let him lay down to see if that improved his breathing, after check on him every hr and finding him covered in blood which he was coughing up the midwife on duty decided to send us to Rotorua, i wasnt allowed in the room with him I could only watch through a window while they tried poking tubes down his throat, that was 9am at Rotorua then to be put in another ambulance and sent to Waikato, Hamilton; where they took Devin into NICU and had to start bagging him I didnt get to hold Devin until he was 10days old then 2 days later I was to take him home. I was allowed to spend one night in hospital with him, but as Devin was my 1st baby and I am a single mum I left not knowing what was normal for a baby with Devin’s problems, as we left I was told if anything wasnt normal to go straight to the Drs, to me everything was normal. Now that it is 10months on my dr has commented to me that from not having that true bonding with Devin at birth and feeling like I have been thrown in the deep end he can see the signs of post natal depression creeping in, he told me that if I had of demanded more time in the hospital with Devin when I went home i wouldnt have had all the problems i have now. The best advise i can give to you is to find a nurse that you are comfortable with and get along with and get her to call you everytime something happens, eg first bath, feeds; also try and be there when the drs do there rounds, that way when one dr hands over to the next dr you are there to hear what Luke has been like over the last 8-12hrs and what the plan is for the next 8-12hrs. Ask to spend 2 nights on the ward with Luke before you take him home so that you are prepared for the “abnormal moments” if you have them. Being so little they do bounce back really fast. We are thinking of you and Luke and i am sure Joshua will be looking forward to being with Luke again. If you need help just make sure you ask, or need to talk to someone we are all here for you.
Thanks for sharing your experience. It’s not knowing what we can & can’t do as parents in hospital - I don’t want to be a nuisance to the nurses as they’re the ones looking after Luke. My husband is a lot more vocal than me and asks lots of questions but it gets confusing after a while knowing what may or may not be the problem with Luke’s breathing/feeding. My husband is convinced that Luke may have a chest infection as he keeps bringing up mucus when he coughs/sneezes but the drs have tested for bronchiolitus and it came back normal.
To be honest with you Jo I find it all very tiring as it feels like trying to get blood out of a stone - I haven’t got the energy to put up much of a fight against the health service. I just want Luke to be well enough to come home so I can take the time I need to get to know him properly and to give him all the love & help he needs to grow as a child.
Devin also had a lot of mucus after his op. The nurse that I ended up talking with that looked after Devin said that it was all the “gunk” that had built up in his windpipe and oesphagest and they just need to help clear it until they are able to clear it on their own, she was kind enough to tell me it could take 3mths as all kids are different.
I was the same as you and didnt want to ask questions instead I got my mum to ask for me, I kinda gave up on asking as I couldnt understand. the othe problem we faced was drs would only talk to my mum as they thought I was not old enough to be Devin’s mum, I’m 23yrs.
Once Luke is out of NICU it is pretty smooth sailing, you only experiance problems normaly in the winter and when you introduce solids, I waited until Devin was 6mths and then I only gave him farex.
Hope you get to take Luke home soon, if you ever need someone to talk to you are always welcomed to email at .(JavaScript must be enabled to view this email address)
Luke had his dilation yesterday -it was brought forward a few days - hopefully Joshua & I will be able to stay overnight with him tomorrow if things don’t change yet again! I just can’t get used to it all and I’m 40!!! But as these are my first children I probably feel just as you did - getting used to being a mum as well as dealing with drs etc… can be quite daunting!
Are there many TOF children in New Zealand? Do you have a support group near you? I think it might help my husband & I to meet other parents to talk with as we’re finding it difficult to support one another & dealing with things differently.
Was your mum able to help you a lot when you got home? Mine is 100 miles away and recovering from ovarian cancer - my sister-in-law came yesterday & did some of my ironing for me but she lives 30min drive away & has 2 children of her own. So it just me & my husband coping as best we can!
Oh my, goodness, i thought I was alone in having the TOF AND twin thing!!! Yes, WHat you wrote pretty much sums up what I went through too. Even though I went through the motions at the time, I still feel guilty for not seeing my TOF twin.
I should start from the beginning I suppose. My name is Claire and I have identical twin boys Oliver and Harrison. Born by planned C Section at 36 weeks. Now 18 months old.
Although both twins were small at birth, Oliver (non-TOF) stayed with me. Harrison (TOF and slightly smaller) went to special care. I kept thinking he’d join me and Oliver anytime soon, but he never did. I still feel guilty for not going to see him in special care until late afternoon (born 9.30am) even though I was recovering from the operation myself.
The TOF was diagnosed the day after birth, and later that day me and my two boys were whipped off to another hospital. We all stayed there for a couple of weeks, though H was on a different floor, obviously. After those 2 weeks, we transferred back to local hospital, and I brought Ollie home. H stayed in another month. I literally had to choose some days between eating the only thing I’d had to eat all day, or going to see H in hospital.
Having a newborn at home to look after and one in hospital to look after is about the hardest thing i have ever done in my life, emotionally and physically. I don’t think anyone else will ever understand that.
It helped when people said to me, Oliver only has you, H has a whole army looking after him! If you look after Ollie well, in will make it easier to look after H properly when the time comes. It was true.
There is so much I could say, but it would take far too long. If you want to e-mail, my address is: .(JavaScript must be enabled to view this email address)
PLease note it’s clarie not claire, even though my name is actually claire, BT set up the e-mail address with an incorrect spelling!
I really feel for you, and you will already know it’s not easy. Harrison was short gap etc,had only the TOF and OA and minor holes in heart, but nothing complicated, but has had a number of problems along the way. However, if you’d have asked me at one month old, would he sit up in Tesco’s cafe at 18 months old, eating kids’ butties, and grown up steak pie n chips off the menu, I would have laughed in your face. But he did - 2 weeks running recently. Even when other TOF babies have overtaken him in terms of advanced eating, he has got there. And having a twin as a role model is definitely a good incentive. There is an article somewhere on this website specifically about tof twins. If you don’t find it, let me know.
If you feel fed up, please do e-mail. I can let you have my other contact deails too, if you want to chat on phone. i know how hard it is when people honestly don’t have a clue what you’re going through (don’t let them try to say they do, there is NO WAY they can unless they have twins and a TOF).
It really honestly truly does get better, in fact time flies, though it doesn’t seem like it in the first few weeks. or months even.
I don’t want to be at all patronising, but if you want me to let you know how i managed in the early months, I can pass on a few tips if you like. EG, feeding non-tof first so that he is over with, then you can take time with the tof baby so that he is more settled. And getting dummies! My God, they were a god send!!!
Sorry to waffle on. Hope some of it has helped.
Claire xx
Hi, I also have twins identical boys who are now 10 yrs old. Jack who is the TOF and Oliver. Reading your messages brings back many memories. They were 7 weeks premature born in Leicester but transferred to Nottingham as there were no special care beds. We were then told of Jack’S tof and he was operated on in Nottingham, we all stayed in Nottingham for ten days then transferred back to Leicester. I took Oliver home but Jack was in hospital for 10 weeks in all. During his first months he had several dilatations and an aortopexy for trachemalacia. Writing this now it sounds awful and visiting a sick twin and looking after another was not easy, but if you could see him now you would not think he had been through so much. I remember finding it difficult to talk to the doctors and nurses partly because I did not know what to ask and they sometimes seemed so busy. I did speak to my health visitor who spoke to the staff on my behalf which helped.
Jack is a very happy healthy boy no different to any other 10 year old who enjoys swimming, cubs and school. He still takes medication for reflux and is a slow eater but if you had told me things would be this good all those years ago I probably would not have believed you.
I wish you all the best and hope you have both your twins at home soon.
Hi Anna, was wondering what the neonatal counsellor was? I know that I’ve never really come to terms with the guilt - especially when I had a miscarriage three months before conceiving the twins…
Claire
link to the twin article - it’s under TOFS leaflets - if you’re trying to find it directly, look on left hand side of page, took me ages to find the link!!!
Claire
Am so glad I’m not the only one with twins! Do all hospitals have a neo-natal counsellor? I had a heart to heart with one of the nurses last week about how I was feeling and she contacted my health visitor to find out what sort of support I could get locally. Am seeing my GP tomorrow but find it hard to talk about my problems. I’ve always been better at writing things down. Am surprised they don’t automatically provide help for us mums - it is a very traumatic experience!
All - I’m not mum of twins but thought i’d add to the bit about counselling..
There is a neo-natal counsellor at Addenbrookes who Mark and I saw for a couple of sessions (Ian I believe he was called).... I remember him appearing at the door of the NICU ward just as Laurie was being taken down to theatre on day 2. Most of the time he wandered around the place and you could just wander up and talk. I’m afraid we didn’t use him as much as I think we should have (and probably should still!).. I recall one session, Laurie had just been moved to SCBU from NICU, the session was planned for 6pm so Mark could get in from work. That for some reason was a particularly bad day, just before the session, I was trying to feed Laurie some expressed milk through the NG tube. He was violently sick and I just couldn’t get it right, no matter what I did, he was sick, the milk went everywhere (I was trained to treat expressed milk like gold dust!!), the nurses were all busy elsewhere and I felt such a crap mum… Anyway, I hogged the whole booked hour with how crap I was!! He was, however, very supportive..
I remember him saying that if we needed him to get in touch.. And low and behold, 10wks later we were back in PICU with pneumonia and bronchilotis. When Laurie was going cold turkey off all the drugs they pumped him, he was very poorly and I was a mess (quite a regular occurance back then and even now!) and I saw one of Ian’s colleages.. all she tried to do was encourage me to go and get my hair done at the ‘concorse’ hairdressers!! Apparently would make me feel better..
I would recommend anyone who feels they need that support, to get in touch with their hospital NICU ward.. and ask. I can totally relate to the feelings of meltdown and “its not supposed to be like this” ..
Another route is via the HV and GP. My HV recommended I met with someone from the post-natal services.. I can’t remember exactly but it derived from my feelings of crap-ness again after we got home from the pneumonia episode.. The HV came round and I sat and sobbed for over an hour so she figured it would be helpful.
We’re not seeing anyone at the moment and I have to admit, sometimes, I think I should at least.. Tend to use Claire (Twin Mom) at the moment - confessions of erratic thoughts and guilt!! And its great to have this opportunity to talk to people who are going through what you are..
Big hug to all and just remember.. we’re amazing!! We’re not at all crap!
Rachel - did you find that to other people you looked like you were coping really well when inside you were falling apart? Sometimes I feel like screaming at everyone that I’m not doing as well as they think I am. Also when I do break down and cry my husband tells me not to cry and asks why I’m crying which just makes me angry . I/m not good at expressing anger as had bad memories of my dad exploding with anger so I tend to withdraw & go silent instead.
Tried to wind Joshua last night and was hopeless -was tempted to take him down to dad as he is the expert wind bringer upper but thought I’ve got to try to do it myself otherwise I’ll be handing all jobs to him and will feel even more useless than I do already -if that makes any sense. Feel like I’m fighting my own low self esteem as well as everything else! Am scared I’ll end up like my mum -very practical but not very loving - I want my children to have a better bond with me than I do with her. I envy people who can ring their mum up every day for a chat & get listened to - when I speak to mine she only talks about herself & very rarely asks about how I’m doing -she was like that before she was diagnosed with cancer.
Sorry to go on but aaargh!!! Got to get it off my chest somehow.
Fay
I feel for you, I do and I’m sure every other mum out there is agreeing with you, remembering those early days. What I would say is that your little bundles are only a matter of weeks old. This is going to be new and totally different to what you were expecting. It is going to be hard and you are going to feel times of desparation and loneliness, where no one understands.. Like you, i’m a first time mum, we’re of similar age and this is not what I signed up for! I have the guilt, the ‘why me’ the ‘why us’ .. what did I do to deserve this…! Now thou, many of us here have the benefit of time on our side - you’re just starting out. We’ve been there and done it and are slowly coming out of the other side, having got used to it and for some of us, its all we know. If you had told me when Laurie was 5wks old that I would be smiling again, working again or even able to laugh again, I would have laughed (bit of a contradiction there, but i’m sure you know what I mean) in your face and probably finished off with a good old cry! You are still recovering from the birth and the shock - so no one is going to think you are not coping just for asking for a bit of help. Use your husband, if he gets the burps then give that job to him; you’ve for loads more to be in charge of.. Mark does the bedtime routine now; that’s his job (as well as others!).. Sometimes Laurie is an angel and I think Mark has it easy… but there are times when he’s upstairs for an hour trying to get a crying baby to calm down… that’s when I know we are sharing.. Cos I have my fair share too.. Cry when you want to.. its a release and you have to let it out. Never feel ashamed to cry.. Mark and I still do it, usually in turn, but both nonetheless!
I have bad memories of an exploding dad too and always opt for the ‘quiet’ life if I can, I hate confrontation (which is probably why I stumbled through the early months), didn’t have the courage to ask for help or ask for explanation and took everything so personally.. In fact, I think we could have the same parents!! My mum soulds exactly like yours; when she does call, it doesn’t even cross her mind to say “and how are you” and if she does, she rarely listens to the answer.. About 2 mths ago, after Laurie had a bad choke, I talked to her on the phone and for the first time I told her about the choke and was crying at the time.. she didn’t seem phased and I’m positive if I asked her to tell me what Laurie’s condition was, she couldn’t.. Worst of all, she only lives 20miles away but she never comes round - weeks can pass and not a word..
I have never been a very maternal or very mummsie.. I was told the pregancy would be a lovely experience, full of cravings and an excuse to endulge. I had rose coloured glasses on with regards the birth plan, a calm water birth with minimum pain relief.. Had had various tests to check the health of the baby, all came back clear. As for maternity leave, this was going to be full of coffee mornings and baking cakes to take to said coffee mornings.. Long walks in the park while baby slept peacefully for 20 hours out of every 24!!
For starters, no one said I’d be crippled from wk 28 with SPD and sciatic pain.. Nor that there would be complications, or that my perfect birthing plan would go out of the window before it even got off the ground; emergency c-section which was not fun!. No one said I’d spend my first month living at the hospital in intensive care with Laurie. No one said that the drugs he was prescribed would turn him in to the devil child who screamed for 20 hours a day as soon as we got him home! It wasn’t in the plan to end up back in ICU with pneumonia and in need of life support again for 10 days at 3mths old… By six mnoths he had had two dilations. I gave up thinking about baking, forgot the cake receipe i’d learned and decided to accept my fate And that’s where I am today, still coming to terms with the cards we’ve been dealt, but wouldn’t change Laurie for the world. He brings us so much joy and that makes us sad sometimes… How can a little lad who has been through so much smile and laugh all the time! He started this weekend to blow kisses to me which is so sweet. This year on our kitchen calendar, every time Laurie does something new, I write it on the date.. We’ll keep it for next year, when things are bad and refer back to it, remembering the good times. That’s what gets us through knowing there is good that has come out of all this…
I must go, i’ve rabbled on so much into a thread where I have no relevance… Feel free to PM me anytime, we can swap numbers..
“other people you looked like you were coping really well when inside you were falling apart? Sometimes I feel like screaming at everyone that I’m not doing as well as they think I am.”
Fay, i know exactly what you mean. I still feel like that now. You look like you are coping because there is simply no alternative for not getting on with things. But inside, it all feels so hard, physically, emotionally, everything. I suspect that you have had to learn very quickly that there is so much to do, and it’s hard to think striaght. My hubby used to laugh at my various checklists and instructions in the early days, until I visited work, and my boss (genuinely lovely woman) said, “Well I think if I was getting up 4 times in the middle of the night and was that tired, I’d want a foolproof list too..” That shut him up!
But seriously, I did get a bit obsessed with checklists. Oh sod, it, I still am! Confessions coming out now! I still have a daily jobs list. People used to think ooh, isn’t she organised, but actually it was cos there was so much chaos, not organisation, that i needed the list in the bloody first place!
Re asking for help (winding etc) PLEASE ASK FOR IT! Honestly, that is my advice. You will learn how to deal with things anyway. Trust me, there will be plenty of times when you are on your own etc. So if help is available GO FOR IT! And if your Dad is the expert winder then it makes sense for him to do it.
I have always been so independent, but having twins and a TOF, I really learnt not just to accept help, but to ask for it (still find asking hard tho).
RE your mum. I am one of those people who does ring her every night. However, she is not the most sympathetic person in the world at times. Can be a right old bat if truth be known! (God, hope she doesn’t log on now!)She is absolutley fantastic with the twins, and will happily chat about them for ages, but it’s harder to get her to chat if I have any problems. As Rach said, I usually use her now - she knows what I am on about!
The most valuable thing I have found is this charity ans website, and the people I have met through it. It is a proper little community. If you have any worries, ring the TOFS office and they can give you the number of someone who you can chat to. When I was fed up a while back, I spoke to Christine, whose son Tom is now a delightful young man who spoke at the TOFS conference. Speaking to someone who knew so much about the nitty gritty of TOFS really helped. ANd it maked a difference to speak to someone who is not only sympathetic, but actually understands what TOF is and everything that goes with it.
I hope we have helped a little bit. PLease do e-mail or PM if you need a chat. Take care, Claire
Hi I am mum to twins Dylan (Non Tof) and Jake (Tof) born at 33 weeks on 16/12/07. Jake was diagnosed and sent to Alder Hey and had his operation on 18/12/07. It is refreshing to know I am not the only mum with twins one of whom is a tof and the feelings I have are normal.
It was horrendous travelling from one hospital to another day after day for 2 weeks to fit in visiting both my boys plus having to get home to eat; plus all this on top of recovering from the 8hours of labour, the birth and a retained placenta. The emotions exhausted me as I constantly felt guilty leaving each hospital. I also felt guilty as I was more worried about Jake and had to stop thinking about Jake whilst I was with Dylan as it felt unfair. Plus all this was happening over christmas and I had to beg my mum to sit with Dylan on christmas night as I could not be with him.
My husband Mark had to cope with worring about me whilst doing all the driving to and fro as well as worrying about our sons. We had to cope with disapproving looks from nurses where Dylan was who did not know our situation and thought we were lazy as well as trying to get Jake transferred back to Wigan to be with his brother over the holiday period. It felt like a constant battle and we were given no information on the condition or how it would affect him when we were discharged. Thank god for the website which we only knew about from another set of tof parents in the next incubator to Jake.
Now they are both at home and growing well but sometimes I look at Dylan and nearly burst into tears remembering having to leave him and concentrate on Jake. I tell Dylan time and time again how good he was and strong coping on his own which may sound strange considering he wont remember any of it but it helps me.
So anyone with twins who have been through this I know how you felt and probbaly still feel.
Apparently would make me feel better..