My DD is 24 days old and we are going on our 21st day here at Children's in Minneapolis. To make a long story short, she had some intestinal problems and after almost 3 weeks of misdiagnoses and a negative biopsy, she was diagnosed with Hirschsprung Disease yesterday. My DD had major surgery today, her intestine was cut in half, and the healthy part was pulled out of her abdomen and now its a stoma. She will have to have a colostomy bag for upwards to 6 months. As of now, I can barely look at her stoma. Its bloody and its her intestine outside of her body and that freaks me out just a little bit. Monday, I beleive I will be trained on how to care for her colostomy bag and stoma, since we should be getting out of the hospital sometime next week hopefully. Anyways, I was wondering if anyones children or babys have special health needs that need to be done everyday and how it affects your daily routine. I also have a 22 month old son at home so i can only imagine how busy life will be after we return home. Thanks in Advance.
many parents blog. my cousin has a baby with sma1, which is a terminal muscle disorder (spinal muscular atrophy) and her baby has huge restrictions. I read her and a few others, I will pm you a link.
Right now it seems frightening. Once you learn how to do it, every day
will get easier. I have two ostomies and at first I was quite frantic. However,
once I got the hang of it, it became second nature. I know you can do it. Ask if there is another Mom you can talk to for some support. That will
help. Once everything heals, there is no pain. Also you can have the
wafers pre-cut so you do not have to worry about that. If you want to talk
to me, just send me a message. I would be more than willing to help you.
I am happy to hear that she had the surgery. If I am correct, her problem
is solved. Good luck.
Talk to the case manager or social worker at the hospital about what services you can get (home nursing visits, help with respite care, eligibility for Supplemental Social Security, parent support groups). Also make sure you have discharge plan that is clear what follow up care is needed and where to call if you run into a problem. I'm not familiar with your daughter's condition but both my babies spent some time in the NICU. It feels pretty overwhelming at first. When you are a bit more recovered from the birth and crazy hormones it gets easier. It also helps when the medical issues become clear enough you know what to expect. Good luck.
I don't have any advice, but just wanted to send you some love and strength during this very scary time for you and your family. You'll soon learn how to care for your daughter and things will work out OK.
Dear aidensmommy-
I want to echo what all the mom's have said so far...you WILL be able to do this!! Mom's are made of tough stuff!
My daughter came home with a trach...oxygen...and feeding tube. The nurses in the hospital were very helpful...and even allowed me to DO all her care for the 24 hours prior to her discharge (they had a studio apartment type deal...I could 'ring' a nurse...but was a condition of her discharge). That gave me confidence.
Looking back now, I wonder how I did it! I look at pictures of shannon and her sibs...and we ALL have huge smiles on our faces - so we coped...
Sending you good thoughts and great strength...we mamas tend to rise to the moment...and you will too! Years from now, you will look back at the pictures...and wonder how you did it...but will be grateful you did.
Think of it like the mom who gets super human strength when her little one is trapped under a car...it'll come!
Private me if you want to chat.
Take Care
Michele/cat
My oldest has had many medical issues since birth and some how you find it in you to do whatever is necessary. If you are squeemish at first, is there the possibility that your ins co would allow a nurse to come a few times a week. I reallize it's hard and there are going to be days that you are just going to have to reach down inside yourself to find the courage to do what it is that needs to be done, but you will be able to do it. The main reason...because you are her mom. Good luck with everything and I'm sure our 22 lil' guy will try to help you just as much as he can as well.
Congrats on your little princess. My little boy has Hirschsprung's as well. Fortunately for us and for him he was diagnosed within a week and had surgery when he was eight days old. He had the pull through procedure and had a short segment version of the disease, so no need for a colostomy. It sounds like your daughter must have a more severe form of the disease than he does. When he was released from the hospital we did have to do twice daily dilations of his bottom and constantly be aware of his belly for distention. At four months old he had a small bout with Hirschsprung's Enterocolitis, which we caught early, but did require a short hospitalization. During all of this we were also trying to keep up with our very active older son, who was 18 months when his little brother was born. Once past the initial adjustment phase I really don't think his extra care affected our daily routine much at all, it just became part of our life. Our baby monkey is now 16 months old and doing fabulous. If you didn't know he had Hirschsprung's there is no way you could really tell! Good luck to you!!!
Update:
I was just reading your previous posts. I can't believe that they took so long to get a diagnosis for you! I also noticed that someone mentioned that her relative with Hirschsprung's had a nasty diaper rash...that is absolutely normal once the baby starts pooping again. Given the fact that your daughter has a colostomy right now, you may or may not experience the diaper rash, but if you do it is horrible. Hirschsprung's babies have the nasty diaper rash due to a high acidity level in their poop post-op, combined with sensitive baby skin. The best way to treat it is actually with Desenex powder (it's for athlete's foot). It is amazingly effective in getting the rash to go away, which will get bloody very quickly if not treated since the acidity level is so high. Also, our surgeon was Dr. Graeme Pitcher at the University of Iowa Children's Hospital. He was amazing. If you experience any further frustrations with your daughter's care I would encourage you to check them out. I think it was due to the UIHC NICU staff's quick and aggressive approach to finding a diagnosis for our little boy that has him doing so well today. If you have any questions or need someone to talk to, please let me know. I would be happy to help. The one thing that kept me going during all of my little boy's time in the hospital and recovery was knowing that Hirschsprung's Disease is something that can be treated and will not limit him in life.
Thoughts are with you! With God, all things are possible.
The nurses should teach you how to care for the stoma. I know it's frightening/scary. Take a big breath and start to learn. It's what she needs. It will get better. The more you care for her and the stoma before you leave the hospital, the easier it will be at home. You will still be uncomfortable going home. Who wouldn't after all you have been through? If you are interested, there should be other mothers with a child with a stoma the hospital staff can have you talk to. Many times it helps to talk to someone who has been through a similar situation. Your little one and your family are in my prayers.
It's amazing what a Mom can do when she has to! I know this must seem intimidating and overwhelming right now. I just wanted to send some positive thoughts your way. Please make sure you have some kind of support system in place near your home in case of emergency - I seem to recall from your previous posts that you live some distance away from Children's Hospital. Have a plan in place before you leave the hospital - this will make it alot easier for you to transition to having your baby home. I don't have specific knowledge of your child's condition, but am familiar with dealing with my own daughter's post-operative care on several occasions when she was little. I know it can be scary, but your confidence will grow and eventually it will become second nature. Sending lots of hugs to you and your family.
How scary. at least it finally got diagnosed... I don't know what happens if it undiagnosed but I'm sure its not good. Every day will get easier... I'd be afraid too, of like hurting her. It probably will affect you a great deal because she'll have to be protected from germs right? What do they do when it's outside her body? At least it's only 6 months and not a lifetime problem. It will become natural after a while.
first off CONGRATS TO YOU AND YOUR FAMILY
you have already been there for 21 days dealing with here health needs i am assuming. so you CAN do this. it becomes second nature to do things for your child with special needs. my oldest son with health needs gets up about 1 hour before his little brother to do treatments and things. did i mention he is 6 and i have been dealing with his health needs from the time he was flown out to a different hospital at 3 days old,and surgery at 5 days old. then close to a 2 month hospital stay, released for about 1 week and wound back up in the local hospital.
you really do get used to it. then when said child is old enough to spend the night at say grandparents/aunts/friend of family, you will wonder what am i forgetting to do? you might also cry a little but since you have a 22 month old also you might jump for joy at having a silent house for a little bit. keep your chin up, ask for help if you need it, don't think you are weak either for asking for help of ANY KIND.
You might want to ask the hospital staff how you go about getting a home health nurse to help with your daughter's medical needs. I don't know how insurance will play into that though.
I'm so sorry it took them so long to diagnose Hirshsprungs! My nephew was born with that in May. He didnt have to do the colostomy bag, they repaired his a lot easier, it sounds like. I definately agree with following other mom's blogs. I dont know how people did things before the internet.
My husband's stepsister's daughter had a baby last year who was born with only one kidney and no rectum, they had to surgically create one for her. It was very scary to change her diaper, I was always afraid I was going to hurt her.
I had a friend who's daughter was fed through a feeding tube for awhile due to a hemangioma on her lip. She said it was scary at first, but they taught her what to do and after awhile it gets easier.
I know the stoma is freaky, and it's all very overwhelming. I'm sending good thoughts your way. Your 22 month old is probably at an age where they really want to help mommy out, which will hopefully work to your favor. Just teach him to be extra gentle with little sister. Maybe you could watch a few episodes of the Duggar's 19 kids and counting when they finally got to bring baby Josie home, and seeing how she keeps the others from touching their immune compromised baby and bringing her into the family might help.
One of my brothers was born with clubbed feet and had to have surgery right after birth, and I can remember being really scared to touch him. Your son may be too young for that, but that's something to be aware of also.
