NEC Disease?
- Thread starter KWAK
- Start date
W
WildCherry
Guest
That is the last thing you need to be doing is looking on the internet. You need to ask the nurses there at the hospital. They will know more than anyone and they will be able to answer your questions without it scaring the hell out of you. Please don't look on the internet and stress yourself out, you need to stay strong for those babies. If anything pray hard to God for help and I will pray too. I'm sure we all will. Talk to the doctors and nurses that is the best thing you can do. They know what will happen better than anyone.
In the mean time, rest when you can and pray for baby A as often as possible.
Dye Tied
Garden Variety Gnome
The internet is full of useful information and if you read up on the condition, you will see this...
The majority of infants with NEC are treated medically, and symptoms resolve without the need for surgery. Treatment includes:
and this....
Most infants who develop NEC recover fully and do not have further feeding problems.
You need to be educated and proactive in your and your family's health. Read up on the condition and write down questions for your doctors. Burying your head in the sand will not help you to stay on top of things, educate yourself and do what is needed to help your baby rcover.
Hopefully this issue will resolve itself without too many problems.
The majority of infants with NEC are treated medically, and symptoms resolve without the need for surgery. Treatment includes:
and this....
Most infants who develop NEC recover fully and do not have further feeding problems.
You need to be educated and proactive in your and your family's health. Read up on the condition and write down questions for your doctors. Burying your head in the sand will not help you to stay on top of things, educate yourself and do what is needed to help your baby rcover.
Hopefully this issue will resolve itself without too many problems.
cattitude
My Sweetest Boy
I know it's common in preemies. My sister's baby was born at 28 weeks (he's 17 now!) and he was x-rayed almost daily to check for condition. He never developed it but I recall the nurses and doctors talking about it and explaining that in most instances, it is treatable. Talk to the babies' doctors and nurses, they will certainly give you the best answers. Remember, these babies need time..they have good days and bad days.
Wishing you the best.
So sorry to hear that Baby A is having problems. My son was born full term at 38 weeks and we discovered he had NEC at 2 days old. He was transported to Hopkins immediately. It depends on the severity of the disease they can either stop feedings & do IV nutrition & high doses of anti biotics or if the intestines develop a perforation they end up doing surgery. My son had xrays every 6 hours to watch his intestines & was put on IV nutrition only, unfortunately his developed a perforation at 3 days old and had to go in for emergency surgery. He actually only had to have about 3mm of tissue removed and they repaired the hole. He did have to have an illeostomy bag for about 8 weeks to let his intestines heal. He stayed on IV nutrition for about 7-8 days & we slowly started feedings again. He was released from Hopkins when he was 16 days old & went back for the illeostomy takedown surgery at 2 months old. He is now 8 months old & you would never know how much he has already been through. Hopefully your baby doesnt need surgery & is healed with antibiotic. Please if you have any questions feel free to email @ haleyhunny@hotmail.com My thoughts & prayers are with you and your baby.
camily
Peace
That is the last thing you need to be doing is looking on the internet. You need to ask the nurses there at the hospital. They will know more than anyone and they will be able to answer your questions without it scaring the hell out of you. Please don't look on the internet and stress yourself out, you need to stay strong for those babies. If anything pray hard to God for help and I will pray too. I'm sure we all will. Talk to the doctors and nurses that is the best thing you can do. They know what will happen better than anyone.
In the mean time, rest when you can and pray for baby A as often as possible.
I have to disagree. Being as this is relatively rare the nurses may not have the information she is looking for. I recommend seeing if Yahoo! has a group for parents/care givers. You will find the best information from another parent that deals with NEC disease daily. They will have tons of tips and offer the best support.
twinoaks207
Having Fun!
Well, sort of -- I think the nurses are probably pretty well informed and a great source of information but it's the Internet piece I really agree with Camily about. The Internet is a wonderful source of information if you know HOW to use it. Always double-check the information found in one site against a couple of other sites. Check out who sponsors the site & who contributes to it. Support groups are a wonderful idea and the Internet is the best place to find them! Don't panic and get all the information you can! Even though we've never met, we're praying & pulling for you & the babies. Hang in there! 
The internet is a good source for information, but it really does depend on the severity of the disease. I do recommend talking to any of the attendings on staff as they are wonderful with answering any questions. I also recommend being at the NICU when the staff is doing their rounds so that they can share in great deal with you everything that is going on with your baby. They will let you listen in on every step that they are going to take with your baby & that is a great time to ask any questions. Again if you have any questions feel free to PM or email as I just went through this a few months ago.
My granddaughter was diagnosed with this after her birth. She and her twin brother were born at 34 weeks. He was immediately taken to Childrens because of breathing difficulties and she was kept at Civista but later transferred to Childrens with this diagnosis. They stopped regular feedings and did iv. After about a week she was able to come home.
They will turn 8 tomorrow and are happy, healthy and a little rambunctious!!!
Sending my prayers and good thoughts for your twins.
They will turn 8 tomorrow and are happy, healthy and a little rambunctious!!!
Sending my prayers and good thoughts for your twins.
Part of what was left out was that this disease only affects 5 - 10% of babies born prematurely and that even with antibitics it can still get worse. Trust me when I see I am reading up on it as much as possible - and I ask plenty of questions to the staff at the hospital. They can tell me facts and statistics - but when I ask the dreaded question of "Will my baby pull through this?" they cannot give me a definitive answer - which was the basis of my question here, wondering how many people knew of a baby that had the disease and pulled through without surgery or life altering complications.
I'm very proactive in my children's health and care. I am at that hospital every day during rounds - where, at minimum, I'm hearing what 2 neonatologists, 2 NPs, 4-5 RNs, and a few residents who see my children almost daily are saying and how they're progressing. The doctors are great at explaining things and always take the time to answer any questions I may have - and the least amount I've asked during any one visit was 2.
I'm just saying that my head is definitely NOT buried in the sand on any of this!
I'm very proactive in my children's health and care. I am at that hospital every day during rounds - where, at minimum, I'm hearing what 2 neonatologists, 2 NPs, 4-5 RNs, and a few residents who see my children almost daily are saying and how they're progressing. The doctors are great at explaining things and always take the time to answer any questions I may have - and the least amount I've asked during any one visit was 2.
I'm just saying that my head is definitely NOT buried in the sand on any of this!
Dye Tied
Garden Variety Gnome
Hang in there. From reading what folks wrote here, the prognosis sounds positive for a healthy recovery. Being educated and proactive is one of the best things you can do. Sounds like your babies are in the best hands right now.
halfangel- I totally understand how you feel, stressed, nervous, scared, upset, helpless.....it is unfortunate that the doctors cant give a definite plan of action with this disease because it is so rare and it is frustrating that the treatment has to be taken hour by hour. I totally understand how you feel when you ask "will my baby pull through this" & all they can say is we will have to see how he/she progresses. It is like a waiting game that you just want to be over. Eventhough our son had to have surgery, in his case their are no problems with his health, growth or learning abilities now. He is a very happy healthy 8 month old that is crawling around and getting into everything. I don't know if this will help but we signed up to participate in a 2 year study on NEC, maybe Childrens can get you some of the information that they have been able to compile? I know that their is nothing that I can say to make your worries go away. I will be keeping you & your family in my thoughts. I pray for a speedy recovery for your little baby. Please keep us updated on their progress.
Last edited:
SoMDGirl42
Well-Known Member
Doctors will never give you a definitive answer to a question like this because of law suits. You have to trust that they deal with this everyday and will do everything in their power so that your angel will come home happy and heathly. We are all pulling for you here too.
I have a very good friend who is a NICU nurse and has dealt with many cases of NEC. If you have a question that they won't answer, PM me and I'll get the answer for you.
Prayers for you and the little ones, I hope you may all be together at home soon.
BTW, have you checked out the Ronald McDonald house? I don't know how that one is, but the one I stayed at when my son was in the NICU 19 years ago was wonderful. You may even find some support from other families dealing with preemies and the same issues. Just a suggestion.