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UPDATE: JACK AND KALEN
They said there would be good days and bad.......
I was concerned because Jack and Kalens bums were very sore and they seemed to be pooing all the time. Well the Doctors were concerned too. The outreach sister popped to have a look at their anus's and she decided that they need to be seen by the surgeon again. He was originally supposed to see us on Monday but the Sister said it was much more urgent :(
We saw the leading specialist that night and he discussed all the options with us. This was comforting to me because I had been researching anorectal malformaitons on the internet and the situation was basically that if they had a mild form they would have to have this thing called dilatation (inserting metals rods to stretch their anus's bit by bit) or if it was worse they would need to have a stoma until they were older and could have reconstructive surgery. The option given to us last time we saw the surgeon.
The surgeon, Dr Sugarman had another option called a cut back where he would just make the anus larger with a small cut which he would then stitch the edges of. There were some small risks but none of them seemed to be on a par with the amount of pain the boys were going through (although they rarely cry so it's not like they were in constant agony)
They went to surgery today and after examination there was no need to perform surgery on Jack and he can have the dilatation (which I will have to take over eventually), Kalen's anus was a bit more smaller but the malformation was only mild like the Dr thought so he performed a cut back. Both boys woke from the anaesthetic without the need for a ventilator which surprised the surgeons. When I left Kalen was a bit grisly (understandable) and Jack was sleeping like an Angel.
The malformations could have been so much worse and can often be a compound problem with other organ problems but all their major organs have been examined/xrayed/US'd and they have perfect hearts, lungs, kidneys etc.
I am pleased the surgery went well but do not like the thought of Kalen being in pain and just before I left he had a desat during which his oxygen level dropped and he turned slightly blue :( but considering he had just had anaesthetic and he is only 30W3D that is fantastic. These are the smallest babies they have ever worked on before so they did a great job.
I know my boys are strong little fighters and I know they will get through this but I am sure it is because of all your positive thoughts and prayers so please keep thinking of us.
I'll try to update you as often as i can but I'm running out of steam at the moment and becoming very tired. I'm managing to express every 3-4 hours and at the moment I am keeping up to the volume of milke the twins require. I only hope I can keep increasing my milk volume.
Thanks for all your prayers and positive thoughts. xxxxx
I was concerned because Jack and Kalens bums were very sore and they seemed to be pooing all the time. Well the Doctors were concerned too. The outreach sister popped to have a look at their anus's and she decided that they need to be seen by the surgeon again. He was originally supposed to see us on Monday but the Sister said it was much more urgent :(
We saw the leading specialist that night and he discussed all the options with us. This was comforting to me because I had been researching anorectal malformaitons on the internet and the situation was basically that if they had a mild form they would have to have this thing called dilatation (inserting metals rods to stretch their anus's bit by bit) or if it was worse they would need to have a stoma until they were older and could have reconstructive surgery. The option given to us last time we saw the surgeon.
The surgeon, Dr Sugarman had another option called a cut back where he would just make the anus larger with a small cut which he would then stitch the edges of. There were some small risks but none of them seemed to be on a par with the amount of pain the boys were going through (although they rarely cry so it's not like they were in constant agony)
They went to surgery today and after examination there was no need to perform surgery on Jack and he can have the dilatation (which I will have to take over eventually), Kalen's anus was a bit more smaller but the malformation was only mild like the Dr thought so he performed a cut back. Both boys woke from the anaesthetic without the need for a ventilator which surprised the surgeons. When I left Kalen was a bit grisly (understandable) and Jack was sleeping like an Angel.
The malformations could have been so much worse and can often be a compound problem with other organ problems but all their major organs have been examined/xrayed/US'd and they have perfect hearts, lungs, kidneys etc.
I am pleased the surgery went well but do not like the thought of Kalen being in pain and just before I left he had a desat during which his oxygen level dropped and he turned slightly blue :( but considering he had just had anaesthetic and he is only 30W3D that is fantastic. These are the smallest babies they have ever worked on before so they did a great job.
I know my boys are strong little fighters and I know they will get through this but I am sure it is because of all your positive thoughts and prayers so please keep thinking of us.
I'll try to update you as often as i can but I'm running out of steam at the moment and becoming very tired. I'm managing to express every 3-4 hours and at the moment I am keeping up to the volume of milke the twins require. I only hope I can keep increasing my milk volume.
Thanks for all your prayers and positive thoughts. xxxxx
Oh, your boys sound so cute! I bet they will be best friends when they grow up.
So happy your twins are having more good days these days and no bad news.
So happy your twins are having more good days these days and no bad news.
I am sooo glad to hear that they are doing well!!
I smiled when you said they are sucking each others fingers & holding hands.. Too precious!
YAY!! for Jack & Kalen's progress, and for your patience! Keep up the great work Mama!! I hope that you are able to breastfeed, but if not, I am glad they are consistently gaining weight! Update us on their latest weights when you can!!
Thanks for the updates! They are so cute!
I smiled when you said they are sucking each others fingers & holding hands.. Too precious!
YAY!! for Jack & Kalen's progress, and for your patience! Keep up the great work Mama!! I hope that you are able to breastfeed, but if not, I am glad they are consistently gaining weight! Update us on their latest weights when you can!!
Thanks for the updates! They are so cute!
That is too cute, how they were holding hands and sucking eachothers fingers. That made me smile.
I am glad the boys are progressing.
I am glad the boys are progressing.
Hiya Guys,
Kalen is 3.5lbs and Jack is 3lbs but they are going to be wieghed again today so hopefully they will be bigger :)
They got their first bath and first dummies (which are teeny tiny) on Sunday. They are now sucking away on their dummies when they get a chance and they remind me of Maggie from the Simpsons LOL. This will help prepare them for next week (34 weeks) when they can try a bottle (full of breast milk) and then hopefully the breast.
We had to get them dummies because they were sucking each others fingers :) and they hold hands too, it's so lovely to see.
Hope everyone is fine and keeping their legs crossed until the babies are actually due!!!
xxx
Kalen is 3.5lbs and Jack is 3lbs but they are going to be wieghed again today so hopefully they will be bigger :)
They got their first bath and first dummies (which are teeny tiny) on Sunday. They are now sucking away on their dummies when they get a chance and they remind me of Maggie from the Simpsons LOL. This will help prepare them for next week (34 weeks) when they can try a bottle (full of breast milk) and then hopefully the breast.
We had to get them dummies because they were sucking each others fingers :) and they hold hands too, it's so lovely to see.
Hope everyone is fine and keeping their legs crossed until the babies are actually due!!!
xxx
They are out of their incubators and in a cot! Together! So they met for the first time yesterday.
Look at my pictures :))
Look at my pictures :))
I am so glad your boys are gaining weight and growing! I hope you can bring them home soon. It must be so hard to leave them in the hospital.
Ur doing a great job mamma. Soon jack and kalen will be home. The worst is over.. now its just a matter of them to get fatter and get ready to come home. I keep reading ur updates and i apologise for not being faster with replies. I am so tired and counting days for the LOs to come now. I feel huge (measuring 43 weeks already) and everything pains..so that gives u an idea why i keep mia. Please keep us updated and post new pics of the babies too.
They won't tell me a time they are not allowed to get your hopes up. All babies are kept until nearly their due dates though.
Kalen was 3lbs yesterday when they weighed him and Jack was 2lbs12 so they are getting fatter and they have both been put up to three hourly feeds which is preparing them for normal feeding. They are trying to suckle and do it more when I am due to express and so I think they can smell me which is nice :) Also if they get a bit aggitated when I am washing them or they are upset (this doesn;t happen often though) if I pick them up in their incubators and rock them, it soothes them which is also a nice feeling.
nikko*ttc : I am gald your sister got to bring her son home finally. It is a miracle that he is doing well because he was born very early. I prayed all the way through my pregnancy (I am not religious at all) that they wouldn't be born before they were ready. Every minute in the uterus counts before 38 weeks!! Give my love to your sister, it must ahve been so hard being wihtout her baby for 6 months!!
Kalen was 3lbs yesterday when they weighed him and Jack was 2lbs12 so they are getting fatter and they have both been put up to three hourly feeds which is preparing them for normal feeding. They are trying to suckle and do it more when I am due to express and so I think they can smell me which is nice :) Also if they get a bit aggitated when I am washing them or they are upset (this doesn;t happen often though) if I pick them up in their incubators and rock them, it soothes them which is also a nice feeling.
nikko*ttc : I am gald your sister got to bring her son home finally. It is a miracle that he is doing well because he was born very early. I prayed all the way through my pregnancy (I am not religious at all) that they wouldn't be born before they were ready. Every minute in the uterus counts before 38 weeks!! Give my love to your sister, it must ahve been so hard being wihtout her baby for 6 months!!
Im am glad that things are going well. It sounds like the young nurse was quite rude to you, people can be so insensitive. I can't imagine how hard it is for you now, but I am so glad to hear that the baies are doing well. Do they still think that they will be home by Christmas?
I can definitely relate about the feeling as if you aren't quite a mother just yet but you know your not pregnant anymore. My sister has had a terrible time with this. You are so lucky that the boys were not born sooner than they were though and it sounds as if they are progressing very, very well. My sister just got to bring her son home last Monday. They keep flip-flopping on how many weeks my sister was when he was born. They say between 20 and 23 weeks. He was born on May 6th and came home November 10th, so just a little over 6 months. Just keep hanging in there, it does get better. Thanks for keeping us up to date. You are in my thoughts and prayers.
Hi all,
Jack and Kalen are still doing fantastically well :)) They are still pooing but not too much this time. Kalen had a bit of nappy rash but he has had some creams on and it's improving.
I got a bit upset on Tuesday night because one of the (young) nurses said I wasnt doing the cares fast enough and they would get cold and they needed to rest. I got it into my head that I was traumatising them and they were not gaining weight because I was keeping them awake and I didn't want to get upset in front of Neil so i just blocked it out but then I couldn't sleep on Tuesday night and I had to sit in the bathroom crying so i didn't wake him.
Then when I went in on Wednesday I got the impression they had run out of breast milk when I was taking 500ml in each day and they are only on 7-8ml per hour. It turns out the milk kitchen had got the instructions wrong and were giving Kalen half EBM (expressed breast milk) and half nutreprem by accident and I have over 30 bottles frozen. I was a bit annoyed because I am expressing every three hours to try and meet the demands of my twins later but I am glad they haven't lost it or given it to another patient.
Also on Wednesday I had to learn how to do their dilatations. This is where a metal rod of a certain size had to be inserted into their anus to help stretch it. Before the surgery they could only insert a 5mm which is way too small and now after the surgery they are on 7mm and progresing to 8mm. The 7mm fits okay in Kalen and the 8mm in Jack when previously this would have made them bleed a little :( I watched the nurse do it and they seemed to go in dead easy but when it was my turn it didn't seem to fit and she said i just needed to 'push' it. Well it's very hard to do something like that to a tiny baby when you think it might hurt and every time I got Jacks legs sorted and him in position i couldn't push and then he would tense and cry. I did it in the end and he only made a small murmer. She said this dos absolutely not hurt him it is just a bit uncomfy and he cried because I kepts touching his anus and not doing it so he knew it was coming. She said babies that small do not know how to fear or get anxious.
After that I spent an hour crying while he slept like an angel. I know it will get easier and I have to do this twice a day to both of them when I get them home to get their anus's to the right size. I just keep thinking how painful it is to be consitpated and that this is for the greater good and it could be much worse and they might have had a stoma and then a much more serious operation.
I have also been doing tube feedings all week and it has been lovely to watch the boys try suckling. They shouldn't even have that reflex yet because i don't think they are supposed to get it til 36 weeks. I'm not sure i'm supposed to but I put my little finger in their mouths when they are being tube fed to give them a practice. I don't leave it there, just let them have a go.
It's nice to do cares for my boys but I still feel a bit strange because I haven't got them home so I feel some loss?!? I know I am not pregnant anymore but I don't feel like a mother just yet? I am hoping this is normal. I find it very hard to have to ask to hold my own children and even worse that it is someone elses decision whether they come home or not and when :( Luckily I have to express every three hours so I don't have time to dwell on this. My Mum has been decorating the nursery and we're going to put one cot in my room and one in the nursery, she thinks this will help me feel more normal.
Thank you for your thoughts and prayers, we're not praying for poo now, we're praying for weight gain :)
Jack and Kalen are still doing fantastically well :)) They are still pooing but not too much this time. Kalen had a bit of nappy rash but he has had some creams on and it's improving.
I got a bit upset on Tuesday night because one of the (young) nurses said I wasnt doing the cares fast enough and they would get cold and they needed to rest. I got it into my head that I was traumatising them and they were not gaining weight because I was keeping them awake and I didn't want to get upset in front of Neil so i just blocked it out but then I couldn't sleep on Tuesday night and I had to sit in the bathroom crying so i didn't wake him.
Then when I went in on Wednesday I got the impression they had run out of breast milk when I was taking 500ml in each day and they are only on 7-8ml per hour. It turns out the milk kitchen had got the instructions wrong and were giving Kalen half EBM (expressed breast milk) and half nutreprem by accident and I have over 30 bottles frozen. I was a bit annoyed because I am expressing every three hours to try and meet the demands of my twins later but I am glad they haven't lost it or given it to another patient.
Also on Wednesday I had to learn how to do their dilatations. This is where a metal rod of a certain size had to be inserted into their anus to help stretch it. Before the surgery they could only insert a 5mm which is way too small and now after the surgery they are on 7mm and progresing to 8mm. The 7mm fits okay in Kalen and the 8mm in Jack when previously this would have made them bleed a little :( I watched the nurse do it and they seemed to go in dead easy but when it was my turn it didn't seem to fit and she said i just needed to 'push' it. Well it's very hard to do something like that to a tiny baby when you think it might hurt and every time I got Jacks legs sorted and him in position i couldn't push and then he would tense and cry. I did it in the end and he only made a small murmer. She said this dos absolutely not hurt him it is just a bit uncomfy and he cried because I kepts touching his anus and not doing it so he knew it was coming. She said babies that small do not know how to fear or get anxious.
After that I spent an hour crying while he slept like an angel. I know it will get easier and I have to do this twice a day to both of them when I get them home to get their anus's to the right size. I just keep thinking how painful it is to be consitpated and that this is for the greater good and it could be much worse and they might have had a stoma and then a much more serious operation.
I have also been doing tube feedings all week and it has been lovely to watch the boys try suckling. They shouldn't even have that reflex yet because i don't think they are supposed to get it til 36 weeks. I'm not sure i'm supposed to but I put my little finger in their mouths when they are being tube fed to give them a practice. I don't leave it there, just let them have a go.
It's nice to do cares for my boys but I still feel a bit strange because I haven't got them home so I feel some loss?!? I know I am not pregnant anymore but I don't feel like a mother just yet? I am hoping this is normal. I find it very hard to have to ask to hold my own children and even worse that it is someone elses decision whether they come home or not and when :( Luckily I have to express every three hours so I don't have time to dwell on this. My Mum has been decorating the nursery and we're going to put one cot in my room and one in the nursery, she thinks this will help me feel more normal.
Thank you for your thoughts and prayers, we're not praying for poo now, we're praying for weight gain :)
I am so glad to hear that the babies are not hurting, it sounds like you have a wonderfukl doctor for your boys. I am sure that things will continue to get better, one step at a time...
I am so relieved your guys are not in pain! All of this is probably harder on you than on them. I hope you can have your twins with you home for X-mas.
This is so good to hear Kirsty. Little Jack and Kalen are holding up so well :). The little fighters will be home soon and am sure u'll have a lovely Xmas with them in ur arms.
U and the little babies are in our prayers . Keep us posted as u usually do ... its good to get their updates and know how much they r improving ...
U and the little babies are in our prayers . Keep us posted as u usually do ... its good to get their updates and know how much they r improving ...
I feel much better after seeing them today. They were as quiet as angels again.
I changed Jacks nappy and his anus looked much bigger. He did some nice solidish poos :)) all over his sheets and then weed on me. The nurse inserted the dilatation rod and he just pulled a face! No crying which means no pain.
I changed Kalens nappy and his anus was bigger and I couldn't even see the stitches. His poo was not solid but he only had his op yesterday. He lsept through me cleaning his bum and it didn't look half as sore as before. I rubbed some cream on it (which was actually eye cream but I figured they use this because if it is safe enough for eyes it is safe enough for the babies) and he didn't wake up. This also means no pain otherwise he would have cried,
So, providing Kalens stitches heal and the cut they made doesn't heal closed again, I think we might just be okay.
Now all I have to do is produce enough milk to fatten them up and they will be home in no time provided they are growing at a steady rate. So now we are praying for growing !!!!
I guess the Docs were right when they said babies don't feel as much pain as we do because they don't know how to fear or be anxious so they are nice and relaxed when things happen which means they can cope with it.
I changed Jacks nappy and his anus looked much bigger. He did some nice solidish poos :)) all over his sheets and then weed on me. The nurse inserted the dilatation rod and he just pulled a face! No crying which means no pain.
I changed Kalens nappy and his anus was bigger and I couldn't even see the stitches. His poo was not solid but he only had his op yesterday. He lsept through me cleaning his bum and it didn't look half as sore as before. I rubbed some cream on it (which was actually eye cream but I figured they use this because if it is safe enough for eyes it is safe enough for the babies) and he didn't wake up. This also means no pain otherwise he would have cried,
So, providing Kalens stitches heal and the cut they made doesn't heal closed again, I think we might just be okay.
Now all I have to do is produce enough milk to fatten them up and they will be home in no time provided they are growing at a steady rate. So now we are praying for growing !!!!
I guess the Docs were right when they said babies don't feel as much pain as we do because they don't know how to fear or be anxious so they are nice and relaxed when things happen which means they can cope with it.
Im glad things went well. And thank you for the update!
Take care! And Ill will keep you, the boys and your family in my prayers.
Take care! And Ill will keep you, the boys and your family in my prayers.
I am sorry that the boys arrival has been met with complications, but at least it seems you have fantastic and fast acting doctors that are doing all they can to give the boys relief! You must be exhausted. I think about you and the boys often and will continue to do so..
I am glad to hear they are improving!! Hopefully only great updates from here on out!!
HUGE HUGS!!
I am glad to hear they are improving!! Hopefully only great updates from here on out!!
HUGE HUGS!!
Im so sorry that they had to go through that, I can't imagine how stressful and hard that must be for you and your partner to watch and deal with. Your boys are beautiful and we can tell just from looking at them they are strong babies... keep us updated when you can, but take care of yourself first.
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