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Ethan's update/surgery
Ethan's surgery went well and he is doing fantastic and we are optomistic that he may be home by the weekend!!! I know I haven't gone into much detail about that but here is what happened. After breastfeeding them both once I was given the option to have them feed sugar water from a bottle through the night or come down to the nursery to breastfeed. I was told that the bottles may help them wean from their iv's faster so they would be able to leave the nursery and plus I was exhausted so I let them stay. At about 4:00am my nurse and a nurse from the nursery came into my room and she sat down to tell me that basically that had unfortunately missed the fact that Ethan did not have an anal opening and was unable to rid the waste from his body, he had started spitting up the sugar water and there was blood in it and his belly was getting distented. So I went to the nursery to say goodbye to him. The next day he underwent a host of tests as I understood this condition came with a host of other brain and heart problems - luckily Ethan has none. It was hard to comprehend it all as well as again having to remind myself that I did indeed have twins. The surgery was scheduled for friday which of the two options they figured he would require a colostomy for 3-4 months, another surgery to reattach the bowel to an opening that would be made in the first surgery along with a dilator probe needing to be inserted daily to prevent closure, and then another sugery later on to close the colostomy. The morning of I was d/c at 6:00am and immediately went to Children's to see Ethan before surgery, when I got there there were rumors floating around of him having a meconium smear in his diaper, the surgeons came in to comfirm and in an instant everything changed. Ethan would require just this one surgery to create and opening and bring the sphincter muscle to it and dilation with the probe. It will probably be continuous maintenence for the first 5-10 years until he is aware of his condition and can verbally express things about what is going on in his body. I would imagine a high fiber diet as well as stool softners ect.., but even so that was way more appealing than a colostomy and future surgeries!!!
He is already off the ventaliator and feeding and pooping up a storm. They have just increased his feedings to 15cc/3hrs and the catheter is due to come out today!! Agains, thanks for all your support encouragement and prayers. Hopefully the next few times I get on here one will be to announce his arrival home!!
**Alexander is doing wonderfully at home and is waiting anxiously with the rest of us*
He is already off the ventaliator and feeding and pooping up a storm. They have just increased his feedings to 15cc/3hrs and the catheter is due to come out today!! Agains, thanks for all your support encouragement and prayers. Hopefully the next few times I get on here one will be to announce his arrival home!!
**Alexander is doing wonderfully at home and is waiting anxiously with the rest of us*
My boys were born with ano-rectal malformations too!!! One of my boys had an anal cutback (make it slightly bigger) and the other was dilated higher under anaethetic so didn;t need the surgery.
I have to perform anal dilatations on my boys twice daily. They found it hard to pass a five at birth but they are already up to an 11!
This is very hard to do as a parent but it is for the best and my boy don't always cry, sometimes they are quite chilled and it appears the cries are because they don;t like having their bits and bobs out.
I was at first told their would be surgery for a colostomy and then reconstructive surgery when older.
It seems our boys have the same thing, the anus is not quite lined up with the bowel. Talk to your surgeon about an anal cutback and see if he has heard of it since i remember my surgeon saying it was a new procedure.
My boys only need to have dilatations until their anus is the right size for their age and we will not know if they have to manage it by diet until their are older but it is looking unlikely.
My boys are pooing for England now.
If you want anyone to talk to about this, just e-mail me. Learn how to do the dilatations yourself even though it seems a bit wierd and its difficult as a parent, it will get Ethan home faster.
You're right too, the bond is strong. my boys have been unsettld in their moses baskets since we got home and last night I put them in together in the nursery and they were much better. They were obviously missing each others close contact in the night..
I have to perform anal dilatations on my boys twice daily. They found it hard to pass a five at birth but they are already up to an 11!
This is very hard to do as a parent but it is for the best and my boy don't always cry, sometimes they are quite chilled and it appears the cries are because they don;t like having their bits and bobs out.
I was at first told their would be surgery for a colostomy and then reconstructive surgery when older.
It seems our boys have the same thing, the anus is not quite lined up with the bowel. Talk to your surgeon about an anal cutback and see if he has heard of it since i remember my surgeon saying it was a new procedure.
My boys only need to have dilatations until their anus is the right size for their age and we will not know if they have to manage it by diet until their are older but it is looking unlikely.
My boys are pooing for England now.
If you want anyone to talk to about this, just e-mail me. Learn how to do the dilatations yourself even though it seems a bit wierd and its difficult as a parent, it will get Ethan home faster.
You're right too, the bond is strong. my boys have been unsettld in their moses baskets since we got home and last night I put them in together in the nursery and they were much better. They were obviously missing each others close contact in the night..
God bless you and your little ones! I will pray for a speedy recovery for your baby. I'm glad that things turned out better than expected. I'm sorry for the many worries this has caused you. But glad that God blessed you with those little bundles of joy :)
Oh my, I have tears in my eyes to think you had to go in to say goodbye to him but now he may be coming home with only one surgery! *HUGS*
Yes the bond is amazing, when I was saying goodbye to Ethan as they wheeled him away Alex suddenly woke and and began crying, the nurse commented on how he hadn't cried all night long until then. I cannot wait to have both boys home as I can count on one hand the number of times I have held Ethan - I need to catch up in the picture department for him too =-)
People ask me how I do it and I guess you just do, its not as if we have much choice. God is with us and he is in the care of a great nursing staff and skilled surgeons.
They upped his feedings to eat as much as he pleases, hubby visted him today and said that although the surgeon wouldn't say for sure there is definitely a chance he will be home this week!!!!!!!
People ask me how I do it and I guess you just do, its not as if we have much choice. God is with us and he is in the care of a great nursing staff and skilled surgeons.
They upped his feedings to eat as much as he pleases, hubby visted him today and said that although the surgeon wouldn't say for sure there is definitely a chance he will be home this week!!!!!!!
Glad to hear that he doesn't have to have all those surgeries and things are going as well as they can!
Try to take care of yourself during this time too!
Try to take care of yourself during this time too!
so happy to hear Ethan is doing so well. do u know when he will be able to come home? i bet the boys really miss eachother. i couldn't imagine how attached twins get to eachother being in the womb together for all that time. i think its amazing the bond they will always have. i will keep Ethan in my thoughts and prayers. i'm sure he's doing great though, seems to be a strong little trooper already. they are so beautiful..let me know how everything goes, i hope to hear that hes home soon. take care of yourself and good luck!!!
ash
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