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We can't send him back...My worst nightmare has happened

post #1 of 96
Thread Starter 
That is what my husband keeps saying, we can't send him back. Our baby is ten days old and still in the NICU, he is a big term baby at nine pounds but had a stroke in utero and has down's syndrome. He is medically stable but is not eating properly and can't come home. It may be several more weeks.

Where do I fit? Not with the preemie moms because my baby is term and a giant compared to their tiny little ones. There is a new mother's support group and breastfeeding group at the hospital but I can't bear to be around healthy babies right now and the concerns of new moms. I'm not a new mom, I am a breastfeeding mom who is feeding her dd and pumping for my son in NICU.

I am just a mess right now. It is terrible : to say this but when I became pregnant my worst fear was what if I have a child who will be a burden to us in our old age and to our family now. My husband says all children are a burden I feel like all the plans we had for a new baby and our family have crashed against the rocks, I can't see a future right now that makes sense to me.

I have times when I don't want to visit him. It is difficult anyways because he is seventy miles away and by the time we travel there we only have a few hours until we have to come home again to take care of the other kids. I don't want to pump milk but can't bear not to because I feel so strongly about the need for breastfeeding.

I may never breastfeed again and that is hard to take. I so much wanted to have that special time with this child.

I can't talk about him without crying. I can't even think about him without crying. By the way he is beautiful, perfectly formed with very minimal features of DS. Because he had a stroke it is hard to tell what will be permanent and what will get better with time.

The baby things in our house are so depressing for me. I feel worse than I did after my miscarriages.

Every hope and dream I had about having this baby and the homecoming are gone.

I need some hope for the future and I can't find it. I don't know how I can cope with another three weeks in the hospital or with him coming home on possibly a feeding tube.
post #2 of 96
Oh mama, it sounds like you're in a really dark place right now. Love and healing to you and your newborn sweetheart.
post #3 of 96


You are welcome here, and it's a great place to suss out feelings and needed action. The bestest women I ever 'met' are here...

You will grieve the loss of your dreams about your baby, and it is a process. Try not to be too hard on yourselves, and try to remember to love one another in these hard times.

post #4 of 96


I am so sorry you are going through this. If you want positive stories of kids I have worked with who had DS and were stroke survivors, just ask...

post #5 of 96


It's a terrible shock to have a child who is ill and with a disability, and your mind is full of what-ifs right now. It's OK to grieve the child you don't have before you get to know the child you do have.

Does the hospital have a social worker? You might seek them out for someone 'neutral' to talk to, someone who can give you a sense of what to expect. You also sound, understandably, depressed, and I would make sure you keep an eye on that. You need to take care of yourself before you can care for your children.

Many moms here can tell you about pumping or deciding to let that go, about tube-feeding, and how it's not that bad, about having a child with major and/or minor disabilities. You're not alone, you're just in a different world than you thought you would be. Post your questions and your concerns. You'll find the moms here very open minded and helpful.
post #6 of 96
I just had to send a . I'm so sorry you're struggling right now.
post #7 of 96
I saw your post when your ds was born in your DDC. I still have no idea what to say without sounding totally stupid, I'm sorry.

Just know this is a safe place. You can talk it out and sort it out here. No one here has been exactly in your situation, but many moms here have had critically ill newborns, tube fed children and newborns, children with down syndrome, and children who have sustained mild brain damage. There are moms here who can talk to you and help you find your way down this new path.

post #8 of 96
I second talking to the hospital social worker. They are pretty helpful, if only as a sympatheic shoulder...
post #9 of 96
i couldnt read without giving a :HUG

i also second seeking out a social worker, or the like that you can let loose with all you are feeling, etc... i worry for you too
post #10 of 96
Oh, mama,
I can't imagine what you are feeling... But this is a safe place to come, vent, cry, and share. We will not judge you.
I am sending healing vibes to your babe, and to you... right now you are all hormonal, and your body and emotions and heart all need some time to heal. Try to find support where you can, pump if you can, and let us know how you are doing. We care.
post #11 of 96
Quote:
Originally Posted by Finch View Post
Just know this is a safe place. You can talk it out and sort it out here. No one here has been exactly in your situation, but many moms here have had critically ill newborns, tube fed children and newborns, children with down syndrome, and children who have sustained mild brain damage. There are moms here who can talk to you and help you find your way down this new path.

Yeah that. I remember feeling many of the same feelings you've expressed in your post. Please be easy on yourself--having a baby in the hospital on top of normal postpartum hormonal stuff can be brutal.

It sounds so cliche, but taking it one day, one hour at a time is all you can do.
post #12 of 96


You can't send him back...but in the future, I promise you will be glad he is here.
post #13 of 96
Oh mama, I don't really even know what to say. I haven't been in your shoes, but I can tell you the mamas on this board are wonderful and will listen unconditionally.

No matter how or when we learn any of our kids are special needs, there is a grief that goes with it that many people cannot understand. Remind yourself this is still the baby you loved while you were pregnant and waited for. I know it must be really hard to not know what the future holds right now, just know you don't have to figure it all right now. Be kind to yourself because any emotions you are feeling are the right ones for you to be having. I cannot imagine how hard it must be to deal with what you are dealing with, especially while being post-partum. Please feel free to talk to us here as much as you need.

Sending you many hugs and many healing thoughts for your sweet little boy
post #14 of 96
Your post prompted tears and a quick dash over to hug my boys. They think I'm crazy.

You're safe here.
post #15 of 96
Many s to you. My "baby" is almost 5 and those kinds of hard days are way behind us but I remember the grief and fear so well.

Talk it out here. Talk it out with your partner. Talk it out with a counselor or social worker. Just make sure you have support somewhere. We can be that somewhere.

post #16 of 96

I am sorry your newborn is in NICU

It's okay to feel the way you do. It's the way many mothers feel without saying the words out loud.

Sincerely,
Debra, homeschooling mom of 4ages 10 1/2 (AS), 9 1/2, 7 1/2, and 4 (Apraxia, Dysarthria, HFA, OCD)
post #17 of 96
Oh mama, I know just how you feel. When dd was born, she was only in the NICU 5 days, but even after she came home we went through so much with feeding problems and the chromosome disorder and it was such a huge, awful shock. I don't think I enjoyed one moment. Even if I was holding her and thinking how much I love her and how beautiful she is, tears of sorrow would be streaming down my face because I knew she wasn't 100% healthy and her future would be nothing like I dreamt, and therefore my future wouldn't be either. Nothing can prepare you for it, but I truly believe, at least for everyone I've talked to- that the period after the initial diagnosis, when there are SO many unanswered questions about how bad it's going to be, is the most difficult. It's emotional hell. I am not someone who can easily be in denial, and I tended to believe the worst constantly. I thought she would die, she would be severely unhealthy, etc. The truth is, it was much too soon to make any kind of prediction. DD seemed totally out of it for the first month. She barely woke up, barely seemed to make eye contact or even notice or care if I was there, had to be force fed, but slowly things got better. So much better. But I still cried, a LOT, through the first 6-9 months. Somewhere along the line, the way I deal with this has improved drastically. I would never have believed at first that I could ever be happy again.

Pumping is terribly hard, but in some ways, it gave me something to do to give me hope that I could help her. Just take that part one day at a time. You can always stop if it becomes overwhelming- thinking about what it will be like to *still* be pumping in 3, 6, 9 months used to make me feel trapped and angry- just making it through one day and one week at a time was better.

Allow yourself to feel however you need to right now- you don't have to be okay with this. It isn't fair. Just know that for most people it really does get easier, emotionally, at least, the cycles of grief seem to happen less and less. Right now everything is very raw and that's perfectly understandable.
post #18 of 96
I wish I had something to say, something to offer you in the middle of all this grief. You expressed the things so many of us special needs moms feel at various points as our dreams and expectations for our lives and our children are seemingly suddenly crashed. You will get through this dark time. You will. And we will be here for you.
post #19 of 96
Thread Starter 
Quote:
Originally Posted by bri276 View Post
. DD seemed totally out of it for the first month. She barely woke up, barely seemed to make eye contact or even notice or care if I was there, had to be force fed, less. .
That is where my son is. I have to go in to learn to feed him and it is really hard for me. I don't know how to pump or bottle feed and I never wanted to learn. How can I do AP like this? My husband holds him and feeds him and seems happy to do so. I'm not happy at all except for the time at the end of the feed when I put him on my bare breast and let him cuddle and sleep. He likes that.

I feel like I was so arrogant thinking I'm an experienced mother and I have it all figured out with breastfeeding, and AP.

This is the opposite of everything we believe as parents. Our child is abandoned into a box most hours of the day.
post #20 of 96
Quote:
Originally Posted by momuveight2B View Post
This is the opposite of everything we believe as parents. Our child is abandoned into a box most hours of the day.
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