so ashamed to admit i cant bond with my baby

Cheryl - posted on 09/20/2009 ( 66 moms have responded )

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i had a daughter 13 weeks ago, i knew she was going to be born with club feet but such a shock i have had, she had 2 heart defects, truncus arteriosus and a large hole, she had surgery at 4 weeks and thankfully survived as she wouldnt have without it, she has a genetic condition which involves more problems in the future. she is fed with a feeding tube and andhas reflux. i just let her lie in her swing most of the day except to feed and change her. i feel that she is so fragile and i cant get into the way of treating her as i would any other child because im constantly reminded that there are so many problems when i look at her. i dont want to feel like this and it is breaking my heart.

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Amanda - posted on 01/22/2010

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I felt the same way with my middle child and only son. He wouldnt respond to me. Not a laugh or a giggle. He didnt even seem to care if I picked him up or not. I would let him lay in his crib or swing while I took care of my oldest (who was only 2yrs) I new something was wrong, I loved him with all my heart but just didnt connect with him at all. My mom finally sat me down and told me that its children like Caleb that dont connect with you, that need the most love and attention. I had to force myself to bond with him. Now Im bonded to him more than anyone else is. Because he couldnt bond with anyone else. There are so many days that I feel like " why me" or " I just cant do this" but he didnt ask for this either. Your daughter is going to need that bond with you. because in some cases (like mine) you are all that she will be able to bond with. To this day my husband still has problems connecting with our son. So does the rest of mine and his family. Its not easy but soon she will come to life and you will be thankfull that you took the time out of your day to spend with her. Because I took the time with my son and picked him up and played with him and made the goofy faces,even though the first few months he didnt even respond to it, he eventually caught on to it and started smiling back and now he is a complete goof and is always smiling and playing. If I hadnt, he might never have come around, he might still be that empty shell that I couldnt connect with. Your daughter has a rough road ahead and so do you, but you have to work together to get through it and make the best out of it. It will be ok. You can do this.

Sandy - posted on 11/16/2009

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I am a mother of a 15 year old special needs girl. I found this "Dear Abbe" article many years ago and it has helped me through some difficult times. Here it is: Welcome to Holland. I am often asked to describe the experience of raising a child with a disability-to try to help people who have not shared the unique experience to understand it, to imagine how it would feel. It's like this. . . When you're going to have a baby, it's like planning a fabulous vacation trip-to Italy. You buy a bunch of guidebooks and make your wonderful plans. The Coliseum. Michelangelo's "David." The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting. After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The flight attendant says, "Welcome to Holland." "Holland?!" you say. "What do you mean, Holland? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."
But there's been a change in the flight plan. They've landed in Holland and there you must stay. The important thing is that they haven't taken you to a horrible, disgusting, filthy place full of pestilence, famine, and disease. It's just a different place. So you must go out and buy new guidebooks. You must learn a whole new language. And you will meet a whole new gtoup of people you would never have met. It's just a different place. It's slower paced than Italy, less flashy than Italy. But after you look around, you notice that Holland has windmills, Holland has tulips, Holland even has Rembrandts. But everyone you know is busy coming and going from Italy, and they're all bragging about a wonderufl time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's where I had planned." And the pain of that will never, ever, go away, because the loss of a dream is a very significant loss. But, if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things about Holland.
I hope this helps because I have come to absolutely LOVE Holland.

Anna - posted on 10/03/2009

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Hi Cheryl. I had twin girls at 26 weeks delivered by cza because of twin to twin transfusion. I was told at 20 weeks that there wasn't much chance of them surviving. The sickest of my girls, I was too scared to bond with. Her sister was in the same room at NICU and I stayed near her because it was safe. The second day, we were told she wasn't going to make it, and not until the last half an hour could I stand to be near her and watch as she died. It was heartbreaking. I held her for hours and hours after she passed away. I was told of my surviving twin's heart condition on the day of her sisters funeral. The doctors didn't think that there was anything they could do to help her as a co-arctation repair surgery hadn't been done before in N.Z on a baby so little. She had surgery at 3 weeks weighing 900grams. She had a further balloon dilatation at 40 weeks. Her stay in hospital was 4 months long, with many challenges. I watched her get very sick at 3 months old, right up to the point of dying and having three minutes of cpr before she came back to us. At that point, I thought, I can't do this anymore, it's just too hard for me. My husband replied, just think how hard it is for her. We only have the emotional part, she has the whole lot to deal with. At the beginning, I did think why me. Then I came to realise, why not me. Almost 5 years down the track, I can now say that my daughter has enriched so many lives and taught so many valuable lessons to many people. Appreciation of what we have, even if it is far from normal. It is a hard road having a child that isn't perfect, but a very rewarding one as well.

Vicki - posted on 09/20/2009

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I think you need to find mom's in your area with similar situation or even just special moms. I feel for you. I love my son but still have my days where this is too hard for me! But your baby didn't ask for all of this either and she will bring you joy in many ways. It is hard but play with her and you will be surprised how much love you can have for a special child. There will be bad days but with support you can get through it. If you are truly having trouble maybe speak to a doctor. It takes awhile to accept life will be different but is can also be very good too. Hope I helped you a bit.

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Sophia - posted on 09/29/2012

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wow .. thats a mouth full honey.. I need you to also think that she constantly may have problems but she also constantly need to feel your hands. Get to know her before long you will only see a cute baby . your heart is breaking .. but just think can anyone be too fragile to be kiss up , love up ,hug up .. no.. get to know her..

April - posted on 02/04/2010

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I think the 1st step of bonding is admitting you're having trouble bonding with your baby. My oldest daughter was born with cleft lip and palate and analstenosis, it came as quite a shock to me as well. I kind of felt like if I didn't get that close to her, then if I lost her, it wouldn't hurt so bad. But she was a fighter, and she was determined to make it. When I got to bring her home around 6 months old, I had to take care of her feeding tube and her colostomy bag and all these medical supplies, I think after a good week of crying by myself and crying with her and trying to figure out how to take care of such a fragile baby, I realized she was the strong one fighting so hard and I was the fragile one not knowing what to do or feel. I finally bonded with her and decided if she was going to fight so hard, I was too. My daughter is almost 10 now, and she still has a few problems here and there, and it still isn't easy, but we're learning together and I'm so proud to have such a strong, brave daughter. I hope all the best for you and your baby!

Marji - posted on 01/27/2010

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Oh Cheryl, my heart breaks for you. My daughter had a hole in her heart as well. She was fine developmentally, she just wasn't thriving. She had open heart surgery at 4 months and suffered severe brain damage. She now suffers from seizures, she is tube fed, legally blind, and dependent on us for everything. She is also in a wheel chair. She only responds to us with a smile and sometimes laughs. She feels pain and will cry but for the most part she is content. One thing we have learned thru the years is unconditional love. We love her as much as humanly possible with nothing in return. She can't hug us or tell us she loves us and she doesn't smile all the time. My advice to you is to just love her. Hold her, read to her, tell her you love her. Because a day will come when you won't be able to hold her because she will be too big. Our daughter is now almost 18! I just noticed you posted this back in Sept. I hope things are better and your daughter is getting better.

Chelsey - posted on 01/26/2010

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my 6 month old son had club feet too along with something called arthrogryposis. dont feel ashamed, maybe you have postpartum depression since your not really connecting with your daughter. dont give up she needs you!

[deleted account]

IT is always a shock to Moms when they go home with a special needs baby. And what a whirlwind... surgery, doctors, putting up a good face at the hospital! now you are home, alone. But ya know what? You are NOT alone. That baby is there, needed the same things a typical baby needs... love, laughter, touch.



Could you have some post pregnancy depression? Or just some new depression? Sure, and you owe it to your self to see someone about that.



In the mean time, spend short amounts of time with that pretty baby. If you can't hold her, talk to her. Of talking seems funny... read. I wasn't allowed to hold my baby b/c of her one pound size at the hospital. So I read. Baby books, children's stories, newspapers, everything.



Its okay to mourn the "normal" child you expected. But now its time to move one. She will surprise you and teach you things about life you hadn't thought about. Mine is 13 now and everyday she teaches me about something. Mainly to slow down and smell the roses. Enjoy one another and life will happen. She is amazing. And so your daughter will be too.



Don't forget to get a sitter and go out for while. Get your hair done, meet with some girl friends for some laughter and crying.... buy a new sweater. ITs okay to live. Before you know it, you'll be taking your daughter for lunch and shopping.

Cherish - posted on 01/25/2010

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Here are some places in N Ireland that you can connect w/ other parents w/ special needs kids.
I have 3 kids w/special needs,one has "severe needs".As far as the "MR" (mental retardation) I know how hard that is to hear,but retardation only means delay,it's not that they can't learn,it just takes them much longer.
My youngest is functionally "MR" but he is above grade level in reading....
Don't feel guilty,you love her and she is adorable!


http://www.snapireland.net/

http://nwpf.ie/about-us.html

Tabb - posted on 01/23/2010

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If your too scared to pick her up, sit by her swing. Sit there and talk and sing to her, rub her face, her hands, brush her hair. When you change her, take that time to hug her and nuzzle her. Do anything you can to let her feel your love, don't drift away from her. Even if your too afraid to hold her right now, do everything you can to still let her 'feel' you. She will be in my prayers, and I hope she continues to do well. GOD bless.

Carissa - posted on 01/22/2010

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I feel for you. I understand what it is like to have a child with such serious problems, I have 2 that depend on me totally for life. They have a lot of the same problems. I can't give you any advice that these other mothers have. What I read is all good advice. I would like to share with you some thing though. It is very scary not to know what the future holds. My oldest is ten then I have another who is three. 10 years ago I was terrified that I would do something wrong to hurt my daugter. That is so normal. You will learn your child I promise. Its so early for you. Then you will become a pro and when other people look at you while you deal with your special daughter as if it is everyday thing (it is for you) they will not know how you do it. I get that all the time. How do you do it? I don't know how you can do it? I have heard that so many times.... anyway. You can do it with Gods help. YOU CAN DO ALL THINGS THROUGH CHRIST WHO STRENGTHENS YOU! It is the thing I say to myself when times get tough. I can tell you love her very much or it wouldn't be breaking your heart. Give yourself a break you will connect if you haven't already. It just took one person looking at my child with pitty for my to jump into momma bear mode and I have stayed there. She was 2 weeks old.
Just remember she is unique not glass. You are not going to break her. I the tube comes out you can put in a new one infact if something happens it can usually be undone.
One more thing. Look into the Shrinners hospital. It is free and it is very helpful. They can provide you with information and braces if she needs them. Good luck and feel free to contact me if you have any questions.

Joanie - posted on 01/22/2010

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Someone sent me this when my son was diagnosed, I found it a great comfort, I hope you get something out of it too.

THE SPECIAL MOTHER

Most women become mothers by accident, some by choice, a few by social pressure and a couple by habit. This year nearly 10,000 women will become mothers of disabled children. Did you ever wonder how mothers of disabled children are chosen?

Somehow I visualise God hovering over earth selecting his instruments for propagation with great care and deliberation. As he observes, he instructs his Angels to make notes in a giant ledger.
“Armstrong, Beth, son - Patron Saint, Matthew
Forrest, Mary, daughter - Patron Saint, Cecilia
Ruthledge, Carrie, twins - Patron Saint, Gerard”

Finally he passes a name to an Angel and smiles -”Give her a disabled child”. The Angel is curious, “Why this one, God, She is so happy?” “Exactly”, smiles God “could I give a disabled child to a mother who does not know laughter? That would be cruel”. “But does she have patience” asked the Angel. “Ï don’t want her to have too much patience or she will drown in a sea of self pity and despair. Once the shock and resentment has wears off, she’ll handle it. I watched her today she has that sense of self and independence that are so rare and so necessary in a mother. You see, the child I am going to give her has his own world. She has to make it live in her world and that’s not going to be easy”. ”But Lord, I don’t think she even believes in you”. God smiles, “no matter, I can fix that. This one is perfect, she has just enough selfishness”.

The Angel gasps, “selfishness, is that a virtue?” God nods. “If she can’t separate herself from the child occasionally, she will never survive. Yes, here is a woman whom I will bless with a child less than perfect. She doesn’t realise it yet, she is to be envied. She will never take for granted the spoken word. She will never consider a step ordinary. When her child says “Mummy” for the first time, she will be witness to a miracle and know it. When she describes a sunset or a tree to her blind child, she will see it as few other people ever see my creations. I will permit her to see clearly the things I see - ignorance, cruelty and prejudice and allow her to rise above them. She will never be alone. I will be at her side every minute of the day of her life because she is doing my work as surely as she is here by my side”.

“And what about her Patron Saint?” asks the Angel, his pen poised in mid air. God smiles, “Ä mirror will suffice”.

Isabelle - posted on 01/21/2010

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GOD be with you and give you peace in your heart as you love your child as best you can. Ask GOD to give you strength and direction in the name of JESUS I pray for you! I have loved my son for 19 years and I am a rape survivor and he was the result of it . You can do it!

Kim - posted on 11/20/2009

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I know what you are dealing with. My daughter was born early and had 4 heart problems,sugar levels were off,and would not suck on the bottle or pacifier. We went home after a stay in NICU and she got up to 5 lbs. Then she had to have a feeding tube but they put it in her nose. Then they found out she had acid reflux and did the fundo nissen and g tube placement. It is hard to hold her. You are afraid of the what ifs. You have to try to get past it and understand she needs you more than a normal child. She needs to be held and loved. Take it slow.

Opal - posted on 11/20/2009

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Biologically, we are geared to bond with newborns during feedings. When there is something that interrupts that it can be difficult to overcome. I found that the emotional part of raising my son was the one thing the medical professionals completely left out. I had to create some of the bonding that came so naturally with my daughters - it just didn't come naturally. It's an ongoing process - my son is 7 and is starting to figure out on his own that he's not like other kids, so it's bringing back some of those feelings. You may want to find out of there is an early intervention program near you that can provide some support.

Crystal - posted on 11/19/2009

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My son was born with bilateral club feet as well as a whole mess of other life threatening problems. I understand feeling like you can't handle her like a "normal" baby, but you can and you should! She doesn't know any different, and the more you treat her like a normal baby, the more you will see that she is - in her own way. Please be patient with yourself and find some local support. Talk to her doctors and tell them you like to be connected with another mom with similar issues. They have special programs for that. My son is now 9 and we still treat him like any other child, regardless of his extensive medical problems- and believe me- he acts like a 9 year old!!
Good Luck and I will pray that you are able to see your daughter for the unique little being she is, not the illness. Hang in there!

Cheryl - posted on 11/15/2009

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hey i lot my password but this is my discussion page so anyone who had added me b4 please do so again. thanks xx

Jennifer - posted on 11/14/2009

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I ALSO HAVE A CHILD THAT HAS " DISABILITIES" iI WAS ONCE AFRAID OF GETTING CLOSE TO HER OF FEAR OF LOOSING HER BUT IN REALITY THAT IS YOUR CHILD YOU ARENT GOING TO "BREAK" HER SHE NEEDS TO BE TOUCHED TALKED TO HELD LOVED ALL OF THESE THINGS THAT IS GOING TO HELP HER MENTALLY GROW STRONG AND PHYSICALLY STRONG. MY DAUGHTER IS NOW 4 AND A HALF AND HAS MADE SOO MUCH PROGRESS AND SHE DOESNT EVEN REALIZE SHE HAS A DISABILITY THAT BABY NEEDS YOUR TOUCH AND LOVE TO GROW!!!

Donna - posted on 10/24/2009

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ok i had to reply to u cause i no exactly what u r going through but u r a few steps ahead of me it took me six months just to feed my son let along dress or bathe or just sit and hold him, and i mean six months after he came home from the hospital were he stayed three months his dad did everything. at the time i thought something was wrong but looking back now i relize i was probably having signs of postpartum depresion disorder wich can hit differently with moms of special needs children even after i did start doing things with him it still took a long time for me to be able to do everything alone i think he was probably around two. now he is eight and i do everything i can even usually tell when he is getting really sick. something his dad has never been able to do (momma knows) i promise it will come it may take a while but dont give up. one more thing, i wish now i would have talked to my dr about it i feel that it was ppd and dr probably could have helped me alot faster than it took. good luck and hang in there the bonding will come.

Anna - posted on 10/04/2009

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Just my name, I'm in New Zealand if that helps. Same photo on facebook as the one here.

Cheryl - posted on 10/04/2009

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thats exactly how i feel, shes been home 6 weeks an it feels like the first 9 were a blur an a bad dream!

Anna - posted on 10/04/2009

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If you want to see photos of my daughter as she was at a young age and how she is now, you're welcome to become a friend of mine on facebook. It all seems like living in a fog in those early days, or swimming in a huge lake not knowing where the shore is. It does get better. The lifeline for me was people I could talk to that also had children with special needs. I used to think it was a bit like what I imagine living in Japan would be like, everyone else going about their normal lives and I was there with my life so different than many others I knew. With all that my family had been through, all of a sudden we were talking a different language.

Cheryl - posted on 10/04/2009

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you are very brave my daughter has similar problems to yours and at the moment i dont no if theres more to come.

Anna - posted on 10/04/2009

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Hi again. Sometimes there isn't a reason why we get children like we do. I constantly told myself that God sent this to me because he thought I was strong enough to cope with it. A pastor used to visit often during my daughter's stay in hospital, even though I'm not religious. She was a calming influence and would often sit in silence next to me. She asked me, You must be really questioning your faith right now Anna. I replied, no I never would do that but I do question God's faith in my ability to handle all of this. My daughter does have other issues. She was on oxygen for 6 months at home after we brought her home and because of her chronic lung disease, she still has quite significant scarring that causes her to cough regularly and to get very sick from just a common cold. She has optic nerve atropy, a vision impairment that most likely happened at the time of her cardiac arrest. It can be caused by lack of oxygen to the brain. She has mild thinning of the white matter in her brain, basically it's a common form of minor brain damage that isn't uncommon in prems. She wasn't meant to be able to walk, due to the possibility of spastic diplegia. She is very active nowdays and you wouldn't know she had trouble as a young child unless you knew what to look for. She needs more surgery, open heart next time. That will be done when she gets sick enough to need it. Everyone gets something in their lives, Cheryl, whether it be disease, loss or disability. Some just have it earlier than others. I also went over my whole pregnancy trying to find reasons. I was given the wrong drug and a high dose when I was 10 weeks pregnant, could I have changed that? No. Of course we wouldn't choose a child that has challenges, but we have to step up to the plate and be the best we can be with what we have been given. Parent to parent organisation is fantastic for support. There are many support groups out there and they are often the places where you'll find really good, supportive and non-judgemental friendships.

Anna - posted on 10/04/2009

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Quoting cheryl:

aww u had a long journey indeed i thought 9 weeks was long in hospital. before her surgery she had 3 cardiac arrests and we were there when 2 of them happened, the way i keep thinking about it was that 9 weeks was just a very bad dream. does ur daughter have any other probs apart from her heart? im sorry for the loss of ur other wee baby, we were told so many times that carly wouldnt make it and i suppose i am ust amazed that she is still here and im waiting on something happen if u no what i mean. i just hate feeling the way like this i feel so guilty. i shud be enjoyin my time with my baby but i just find it hard at times. i just kept thinking of a funeral an everyday it broke my heart. y is life so unfair i keep thinking, it really hurts an annoys me to no that there are people out there that dont want there children and are bad to them or they smoke drink and take drugs during their pregnancy and their babies are born with nothing wrong. i no i shudnt think like that but it is hard not 2. people keep sayin special babies are given to special people, if that was true i wouldnt have felt like this. i keep goin over things in my pregnancy to try an think what may have caused this, i am driving myself in sane!


 

Cheryl - posted on 10/03/2009

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sorry i meant to ask how is ur man now ( meaning jacob!) im sure it was hard for u being on ur own for the first years, i can handle ryan but when his dad shouts i go crazy!

Shelley - posted on 10/03/2009

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Like I said for a majority of his life I was a single mother, untill recentlly 2 years ago . A close childhood friend and I have been dateing and now plan to get married. We do not go to counseling , although I think sometimes we should. Jacob is a handfull. My fiances father is a minister and when we have our difference we tend to turn to him. Through all my vigorous job training it has taught me how to cope. It will always be easier for me then for him. He does get frustrated and sometimes forgets that Jacob does not do certain things in purpose , but is part of his ailment. We have recentlly looked into family counseling to help Dave better understand and cope w/ Jacob "flaws" . Just remember women have a coping mechanism that men do not. My tip is: if your husband/boyfriend losses his cool due to your child, try not to lose it yourself, We can not help but to want to protect our child, thats the way I would feel when dave would lose his cool that I would jump to defend Jacob.When in fact Dave was not doing any harm, it was just his way of copeing. Take a deep breath. It WILL be alright.And like I said I am here to talk to. : )

Shelley - posted on 10/03/2009

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Cheryl. I too have special needs son he is almost 8 now. And the majority of his life I was a single mother raising him and his main stream brother. For the first 2 years of his life I knew there was something wrong, even though doctors said no. I knew in my heart that something had to be done because by age 2 hestill showed me no signs of affection or a glimse of a smile, and on top of it all was a ball full of energy with unbelievable strength , carrying around bowling balls and such( not your norm for a two year old) When the doctors finally started to see my point they immediatelly wanted me to put him on medication. I SAID NO. I went through a series of testing for him and was found to be Autistic with ADHD. So I enrolled him in special services that came right to my home including OT PT speech and physical therapy. All which your locall school district is to pay for . Atleast in NY. I love both of my children, but the love for my special needs son is just a bit different. I put myself through college and got a degree in special education, and now I put all that I have learned with my son to good use. I work for the State of NY in there group homes helping young men and women just like my son or with more severe disabilities.And in turn I have learned other ways to cope. I am not going to tell you that everyhting I peachy, because you will have your ups and downs. The best thing to do is find someone to talk to , somewhere you can vent. This site seems to be wonderful. I wish it was around back then. Also take time for yourself, for me that was very hard, but even if its a walk or time alone to read. Don't forget who you are through this whole process. And don't let anyone tell you that you can't do it. I have tons more input for you but I am not going to take up all your time. If you need someone to talk to. I WILL BE HERE. hang in there your child knows you love them , even though she can't talk hold her close to you....you will feel it. I hope I helped somewhat ! ! ! !

Cheryl - posted on 10/03/2009

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aww u had a long journey indeed i thought 9 weeks was long in hospital. before her surgery she had 3 cardiac arrests and we were there when 2 of them happened, the way i keep thinking about it was that 9 weeks was just a very bad dream. does ur daughter have any other probs apart from her heart? im sorry for the loss of ur other wee baby, we were told so many times that carly wouldnt make it and i suppose i am ust amazed that she is still here and im waiting on something happen if u no what i mean. i just hate feeling the way like this i feel so guilty. i shud be enjoyin my time with my baby but i just find it hard at times. i just kept thinking of a funeral an everyday it broke my heart. y is life so unfair i keep thinking, it really hurts an annoys me to no that there are people out there that dont want there children and are bad to them or they smoke drink and take drugs during their pregnancy and their babies are born with nothing wrong. i no i shudnt think like that but it is hard not 2. people keep sayin special babies are given to special people, if that was true i wouldnt have felt like this. i keep goin over things in my pregnancy to try an think what may have caused this, i am driving myself in sane!

Ashley - posted on 10/02/2009

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Oh that is so great congrats!!! I'm sure it made your day so great cuz it made me smile just knowing. Keep us posted on her Little yet HUGE achievements.

Cheryl - posted on 10/01/2009

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i saw her smile properly for the first today it was only a split second but i am so happy, she is also 15 weeks today!

Ashley - posted on 10/01/2009

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Just remember that she is super special and you cant compare her to other kids. I think all of us have done that at some point & probably still do it from time to time. It will just drive you crazy. Another thing please don't get caught up in reading the parent magazines I drove myself crazy doing that cuz my daughter that is disabled was my 1st child & I had no clue what to expect. Celerbrate the small things & believe me that 1st smile will be the best. Having a special child you will learn patience is the key to you staying sane & her being happy & her learning.

Cheryl - posted on 09/29/2009

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she has become a little more responsive but still no smile, any idea when this will happen i am desperate to c it, she has started liftin her whole body up, an she can wriggle about like nobodys business!! i am slowly bonding, i think it is difficult because a lot of people i no have babies or are pregnant but none in the same boat as me, how selfish does that sound! thanks for everyones support x

Kimberly - posted on 09/28/2009

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Firstly let me agree with everyone else here, what you are feeling is probably what we have all felt at one time or another. My son Michael has Down Syndrome. We didn't find out until he was 2 days old that there was a problem, at 4 days old he had his first stomach surgery, at a month, he had another and had a feeding tube put in. He is six now and still has his feeding tube....we are working on trying to wean him off of it,but I still have to use it from time to time....He was in NICU for 3 months, and I had to temporarily move 450 miles away from home to stay near him at the hospital they sent him to. I am also a post-delivery nurse....Just in a regular, everything is perfect delivery and birth experience, ALOT of my patients have problems with depression.....Cut yourself some slack....Your body is still healing, you are having hormonal fluxes due to the pregnancy, lack of sleep, plus worrying over the health of your baby. You feel overwhelmed and that is all to be expected....I know I personally felt terrible and scared probably his first 6 months at least....The best advice I can give you is to live in the moment and enjoy the little things....try not to focus so much on the future.....There's an essay called "Welcome to Holland"....to paraphrase it, it tells about someone planning to go to Italy....learning the language, getting supplies, getting the money, etc....Then when they get off the plane, they find they are in Holland....They have no idea about the language, they feel lost, scared, angry, sad.....But eventually they start to appreciate the beauty around them and accept that it wasn't the trip they planned on, but it has a special beauty of its own.....It's a grieving process.....you haven't lost your child, but you have lost the idea of that "perfect baby" that you planned for.....I hope this helps just a little....And don't give up.....I still have good and bad days, but Michael has changed me so much for the better....And his older brother loves him as much as I do.....I'm not saying its easy, but it becomes easier to accept.....Also, look on the internet for support groups and talk to others in your situation.....or keep a journal....

Veronica - posted on 09/26/2009

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Please do not feel ashamed by what you are feeling. You have already bonded with your little girl. You have to remember, on top of everything else, you may be dealing with post partum depression and its not your fault. I think you might feel better if you found someone you could talk to. Someone who will understand what you are going through. There are many support groups for moms of special needs. You do not have to start with carrying her all over the place, maybe read to her, play music for her, sing to her. Not every bonding moment has to begin physically. She will feel comfort in knowing that you are there.

Emma-Leigh - posted on 09/25/2009

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What you're feeling is completely normal. You've had some major changes happen - pregnancy, birth, bub with special needs, surgery, hospitals, doctors. It's almost too much to take in some days. If you can, you need to just relax. Take some time out. You need to process everything that has happened. You're grieving for your little girl - for the 'normal' little one you would have had, for the lost potential, dreams and plans. Take each day slowly - minute by minute if you have to. Get to know your bubba. Hold her, sing to her, talk all the time. It will get easier as you go along. It's worth it in the end - they're the most gorgeous children and they bring so much to us both personally and to the family as a whole. It's a hard journey. Get as much help as you can. Best of luck.

Debora - posted on 09/25/2009

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MY BABY BROTHER WAS IN HOSPITAL UNTIL 6 MONHTS OLD DUE TO 5 HOLES THE SIZE OF A QUARTER IN HIS HEART THEY HAD TO PUT HIM ON MED TO CLOSE HIS HEART FIRST SO HE WAS IN REGULAR ICU SINE THE HOSPITAL HE WAS AT DID NOT HAVE A INCU THEN AT 3DAYS HE WENT TO ANOTHER HOSPITAL AND SINCE MY PARENTS FARMED AND HAD 3 OTHERS KIDS THEY COULD NOT BOND WITH HIM SO THEY HAD VOLUNTEERS DOING THE BONDING AND HES FINE NOW AT 37YRS OLD.

I WOULD SAY YOU CAN LAY WITH HER AND READ STORIES AND PLAY WITH HER .AS FOR SPOONFEEDING I WOULD ASK HER DR FIRST SINCE YOU DON`T WANT HER TO CHOKE.

Cheryl - posted on 09/25/2009

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yea she is still on tube she only takes roughly about 10mls but i was considering starting spoonfeeding.

Ashley - posted on 09/25/2009

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It went away around a year or so. She was on 2 meds for awhile & then for most of the year she was only on Zantac. I started putting cereal in her bottle at 4 months & spoon feeding around 6 months. the cereal helps push the acid down. They actually make a formula with cereal in it now I used it on my youngest, it is made by Enfamil or good start, I can't remember. You can probably find it at Babies r us. Also my nephew had acid reflux extremely bad (he is not disabled) to the point he would stop breathing and the doctor's did a procedure on him, which basically created a 2nd stomach like pouch so the acid would go into that pouch and not up his throat. He is 5 yrs old now & hasn't had any issues with it. Is you baby still using the g-tube?

Cheryl - posted on 09/24/2009

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when did the reflux finally go? did u find spoon feeding helped? what age did u spoonfeed? sorry for all the questions!

Ashley - posted on 09/24/2009

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My daughter was born with 2 holes in her heart and was in neonatal till she was 6 weeks old & we were in and out of the hospital with many issues till she was 3 months. She also had extreme acid reflux. I didn't have trouble bonding with her cuz no matter what the neonatal nurses told me I held her as much as a possibly could. You are not going to break her a promise. If you are not comfortable holding her yet, lay her down next to you and just talk to her. I always found talking to my daughter when she was an infant was a relief cuz I could cry and let out whatever was upsetting my & she wouldnt know and would end up making me smile. As she grows more issues will probably come up & happen but you don't need to worry about that now cuz you can't predict it or prevent it. Special needs kids are the happiest kids in the world & I have always said if it is something that's not terminal then we are very greatful. She is your mircale, just take baby steps you will get it.

Sabrina - posted on 09/23/2009

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your honesty and willingness to reach out is commendable.

what your feeling is normal.

my possible take...your dealing with a major hormone shift, dont underestimate that.
possible PPD, and finally, who would cope perfectly when dealing with the possible loss of a child at 4 weeks old ( thank god she did survive! ) and your fear seems to be comming from a place of compassion and possible worry that youll make her fragile condition worse!
its normal. i worked in Labor and delivery for many years....
many parents are aprehensive to physically handal their babies for some time.
its a skill, like any other.

my advice
#1. TOTALLY REASONABLE TO SEEK THE RESPITE OF A THERAPIST RIGHT NOW....your coping, and you want more help.
#2. practice, start small.
if you cant hold all of her, thats ok right now.
just sit near the swing and touch her little head and hands.
maybe sing to her, or talking is fine.
massage her little tiny feet for a few moments
work up the time....
it will come. practice practice practice...it will get easier andyoull feel more secure.

Cheryl - posted on 09/23/2009

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yea i have a lot of support but no one really knows how i feel, i told my mum this morning for the first time. my partner lives here to but he will be going back to work next week.

[deleted account]

Honey, that is so normal. For one you prob. have some postpartum depression, and you also have a special needs child. I have 4 kids in total my second child (Isaak) who is almost 5 is full care...he has CP, cannot walk or talk, and he too has a feeding tube. Somedays it is really really hard..as moms we tend to blame ourselves with what has happened and not understanding you prob. didn't do anything wrong. I also like you have a newborn son (dawson) and I am battling the same depression, I have also felt detached from this little person and have no idea why. I finally realized I am battling postpartum, I had to tell my family and my husband and ask for help. For me to ask for help took alot, but they have stepped in and are helping me with my handicapped son, as well as my newborn. My husband has learned when he comes home he holds our son, and cuddles him. I think with my son I am scared to hold and love him and become more attached for fear of loosing him. I have almost lost my 5 year old and have major fears because of that, you may be the same fear of loving your baby more because your scared one day you may wake up and the baby is not going to be with you any longer. You have done the right thing in voicing the fact that you are detached...now just to find away to help you fix the problem. Do you have a good support system for yourself? Is the babies father around to help you? Wishing you and your baby the best. I am under Sarah Renner on Facebook if you want to add me and we can try to help each other if you would like. Also we live in Oregon which may help you find me. Okay sweetheart hang in there...you are not alone in this.

Linda - posted on 09/23/2009

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I am so glad you feel our support. I am sending you a big hugs. You are in my thoughts and prayers

Brenda - posted on 09/23/2009

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Cheryl,
If possible, pick this baby up! Hold her, sing to her, caress her forehead, sit for hours at a time holding her gently. She won't break I promise. This is why you are not bonding....but please start immediately, she needs to feel you and smell you now more than ever! Especially with her having special needs. If you don't feel you can do this, then please find someone (your Mom? His Mom?) anyone to give this baby what she needs.
You are just scared and overwhelmed, but peace will come to you both, I promise, if you just hold, touch, coo to that precious child. Do it for her at first, I promise that you will be doing it for yourself within a short amount of time.
My thoughts and prayers are with you both....
Brenda,
Mom of 4, one with special needs too :)

Renee - posted on 09/23/2009

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I'm glad you felt support from us.You can always come here to vent or get support.

Cheryl - posted on 09/22/2009

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i live in northern ireland i dont no how i would contact other mums and because of carlys heart i cant really expose her to a lot of people due to risk of infection but as she gets older i think that wud b a brilliant idea. from i first put this post on i have really tried more with carly and to be honest i feel a bit closer to her. i think it is just frusotration because i dont no whats going to happen (i like to be in control of a situation!) but i am goin to really try hard because i no she is a wee innocent baby she didnt ask to born with all these problems an she needs me. i really feel ur support has helped me. i was just sayin to my partner last nite i have not cried from she came home from hospital so that has to b a good sign?!

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