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We can't send him back...My worst nightmare has happened - Page 2

post #21 of 96
It's ok to feel the way you do. Honest. You sound like a great mom, being willing to pump for your baby. Hang in there.
post #22 of 96
I'm sorry things are so hard right now. Everything you are feeling is normal and natural. We need to grieve that loss of the original dreams and ideas we had for our babies before we can move on to see future dreams for them.

You asked how you can be ap under these circumstances and I just have a couple of suggestions for you:

1. see if you can do any kangaroo care for the baby even if you can only be there for limited times. Even if you can't bf the baby feels that closeness and knows mom is there.

2. Moms here at MDC are some of the best educated I've seen in regards to researching choices for their children. Take that thought and use it to give yourself strength if you can. You can be this baby's #1 advocate. You can ask questions until you are satisfied with the answers.

You've found a great place with this board. Come here to vent, scream, cry, laugh (and you will laugh again) whatever it is that you need. You can do this. I know it's very dark right now, but you will find your way back into the light.

There may be all kinds of new things you are learning with this particular baby, but at its heart what this baby needs is exactly what you have given all of your other children I suspect - tons and tons of love.
post #23 of 96
How can I do AP like this?
You create your own version of AP - just like the rest of us have Remember, the core philosophy of AP is meeting your child's needs.

Okay, I looked it up and the eight core principals of AP are -

Preparation for Pregnancy, Birth and Parenting
Feed with Love and Respect
Respond with Sensitivity
Use Nurturing Touch
Engage in Nighttime Parenting
Provide Consistent Loving Care
Practice Positive Discipline
Strive for Balance in Personal and Family Life

You can still do all these things even if you don't breastfeed, can't wear your baby, cloth diaper, etc. Luckily, we here have ALL been through these struggles and are more than willing to help you get through yours with caring and compassion.

and then I read this -

Dr. Sears does not require a parent to strictly follow any set of rules, instead encouraging parents to be creative in responding to their child's needs. Attachment parenting, outside the guise of Dr. Sears, focuses on responses that support secure attachments.

Boy, if that isn't this group, with our creativity in dealing with our kids, I don't know what group would be! We must be the most AP of all

Most importantly, you need to make sure your needs are taken care of and you've got support. Maybe that's a PPD group, a DS support group, or a counselor. Or a great message board like this one.

It is VERY hard to suddenly go from what was supposed to be normal into being thrust head-first into the world of special needs. It is even harder when you don't feel like you fit in anywhere. You look at your child and wonder what happen to that child you expected to watch grow up healthy and happy, and you only see the disabilities - and then you are wracked with guilt for thinking this.

We've been there. I've been there. I remember being very angry and upset over dd's eyes. I thought she had beautiful eyes and loved how they seemed shaped like dh's. Then the doctor pointed out that the epicathal folds might mean some syndrome, we should run tests. Suddenly I found it hard to look at her eyes b/c they were a sign of something wrong. And then I had to realize that they were the same beautiful eyes as before.

I will also admit that when the doctor first started us on the road for the search for the correct syndrome, I had this sudden urge to have another baby right away - partially to prove I could still have a "normal" child, and also to give my older dd a "normal" sister. I then realized that having a "normal" child was not guarenteed and my older dd was and still is perfectly happy with the sister she has.

My path has been different than yours, but it's had it's dark spots and rough patches. But honestly, I think I'm lucky to have such a happy innocent little creature like my daughter.

hugs to you!
post #24 of 96
I just wanted to say I'm incredibly impressed by your post. It is a sign of great maturity and security that you can give voice to these feelings. It is a very healthy thing to do.

Is there a DS group in your area? I know your hands are full right now but I'm wondering if someone at the hospital could help hook you up with a supportive parent who has been through some of what you are going through right now.

Hang in there.
post #25 of 96
Oh honey. I know the dark place you are in. My son was 9 lb 13 oz when he was born, but he was still the sickest baby in the NICU, the one they were talking about putting on ECMO, the one we'd known since 18 weeks gestation might not survive, or might suffer serious consequences from the traumatic birth we knew he would have.

I promise you it gets better. You will have more clarity, more peace, you will know what the future holds because you will be living it. You will work through the grief and the other emotions you are feeling right now: there is no wrong way for you to feel, you have a lot to adjust to and absorb!

I hope very much for you that it will get better as well in that your son will be able to do more than you dare to hope. I don't mean to sound trite, but there is no better time in life than in the beginning to have a brain trauma and recover from it. My son has done amazingly, though there have certainly been other bumps on the road and other surprises and 'new normals' to adjust to.

In the meantime, again I don't mean to sound trite, but take it one day at a time. Talk to whoever will really listen and not tell you how you should feel or try to shut you down. Your dh sounds like a sensible caring guy, but there are times when you won't be able to support each other because it's too much, it's better to turn to others. Do what you can for your beautiful baby: if it helps to pump because it gives you a focus, then pump. I know pumping is incredibly draining! If people offer help, then ask for child care: it'll give you recuperation time and help you feel less torn.

I will be thinking about you. Please come back and talk with us. Again, I promise you, it will get better.

post #26 of 96
Oh mama, s.

I know there isn't much I can say that helps, but I've been in a similar dark place. I gave birth to twin boys that ended up having a random genetic mutation resulting in a disease called Tuberous Sclerosis. In their case, it is really severe, and we are dealing with multiple special needs in each of them. The disease, the medical complications, the twins, the expense, the stress, the darkness....it was just too much.

You'll make it through this. You WILL. It's going to be hard, and you're going to go thorugh all the stages of grief and mourning, but on the other end you're going to find strength, hope, and love like you've never known. Stay close to your husband--this is IMPORTANT. Stay close, share your fears, and listen to his when you can. Lean on each other, and go to each other. You will need him, his love, and his support like no one else's over the next weeks, months, and years. This is the time to turn toward him, not away.

Special needs children often start life out rough. Trial by fire, almost literally. If you can make it through this NICU time, day by day, you'll be able to make it through the rest. One challenge after the next, and in the beginning they're big challenges grouped really close together. As you go on, the challenges will be a mix of small and big ones, and they'll be spaced out more. Much more. You will learn to cope, and special needs mothering will become as natural to you as the mothering you've always known.

Lean on the women here (but not so much that you're not leaning on your husband, too). They will help you through the dark times.

And don't ever beat yourself up for feeling things like "we can't take him back." My boys are 5, and I still have dark moments of wishing the worst....wishing I had an abortion, wishing they would die, wishing I could have my old life back, wishing I had never met my husband or started down this life's road, wishing I could find them new parents. These are the rare, deepdarkawful thoughts, and they're okay. They happen. They're pretty normal, from what I've seen. They don't affect at all the other 99.9% of the time (now) that I feel love, patience, and thankfulness for them. So if in the beginning you have some dark thoughts, or don't want to be near him sometimes, let that shame/guilt/whatever roll off your back. It's okay. Those thoughts might come back to you time to time for years, but like everything else that's overwhelming right now, they'll lessen and you'll eventually see their place in it all.

Is there a grief counselor that works with the NICU? Someone you could talk to about having a baby with special needs? Sometimes they're wonderful people to talk to, sometimes they're hacks. It's worth trying, on the off chance that you meet someone who gives you a word, or a thought, that helps you peek out of the darkness for a little while.

Wishing you and your family healing and strength.
post #27 of 96
you fit in here hun

I hope your little one is doing better, and We are here anytime you need to vent, my pm box is open if you just need someone to talk to. I don't have a down syndrome baby, but I have a nice shoulder to cry on. :
post #28 of 96
post #29 of 96
Thread Starter 
I am trying to hold on to the small things each day. The calls from friends & family, each day is better for our baby. A week ago he was weaned off the vent and we began to hope that he would live, no one would tell us that even a week ago. Then they started giving him breastmilk, 5cc a feed and now up to 60cc a feed. A few days ago they started letting us hold him as much as we want, today my husband came home with pictures of him holding an awake, alert and smiling Nathaniel. Today he started wearing him own baby clothes from home. By tomorrow they hope to remove the PIC line. Yesterday my four year old got to touch him for the first time. They are giving us things now to take home for when he comes home. The child development specialist says things like " a child with suspected DS". That sensitivity means a lot to me since bloodwork has not come back yet to confirm diagnosis. I still think it is true but I appreciate that respectful way of talking about my son.

Thank you for all the encouragement here. It means so much to me and I cried as I read each response.

I know things could be worse. His heart is fine and no signs of infection so far.

I am just so sad that I brought this pain to him and the rest of my family. : Of course the Lord has a plan for him but it is hard for me to see that right now when there is so much pain.
post #30 of 96

The whole situation must be very shocking. Come over to www.parent-2-parent.com forums. There are many kids who had strokes in-utero and have different syndromes and spent a lot of time in NICU. It's a very positive place and you will get tons of emotional support there.

This is also a wonderful board with good AP values. Yes you CAN still be an AP mama even if your child has special needs.
post #31 of 96
Just more mama. Our DS has DS, and it was an awful shock to us too, in the initial phases. It has changed us so much for the better, though, and this boy is just who we wanted. But couldn't have known this up front, and as all the pps have said, your feelings are absolutely normal, every dark thought -- you're not alone. It WILL get better, I promise!
post #32 of 96
And yet another for you. I'm so sorry for all you are going through right now, Mama.
post #33 of 96
I couldn't read and not send a to you.
post #34 of 96
It's wonderful to hear that Nathaniel is making so many gains!

I just wanted to say that I really recognize the feeling that you brought this on him and your family, too. Many of the women in my wonderful birth defects support group (including me!) struggle with feelings of guilt. Even if we know it doesn't really make sense to blame ourselves, we still have those feelings. But less often, and not so intensely -- mostly only when new challenges come along!

You are going to be so deeply bonded to your little boy, and he to you, you'll look back in amazement that you ever thought it would be hard to be an attached parent to him.

I have been to Parent 2 Parent as well and I would second USAmma's suggestion. Lovely people over there. My birth defects group is great but we don't have anyone in quite exactly your situation.

Thinking of you and wishing you many joys with Nathaniel -- such a wonderful name! Fiona
post #35 of 96
It will get better. No, you can't send him back, but he is yours and he will be a blessing. I know I'm speaking as a Mother of a slightly disabled child to a Mother who will have more challenges, but please, take my word for it, you son will be a blessing to you. You will see the world an entirely different way, in ways you never would seen yourself, through him and, in time, you will not be able to imagine life without him. and :for your son.
post #36 of 96

Oh honey, I know where you have been...

DS was born four months premature and had a horrible four months in the NICU. There were many times I didn't want to go see him. I feared so greatly for the future. I remember looking in envy at a woman whose baby had died (horrible to admit, but shows where I was) b/c she was at least free.

It is nine years later and it has been nine rough years, but not bad ones.

Advice. When it is bad, take one second or minute or hour at a time. The sum entirety of it all is just too much. Allow yourself to feel whatever you are feeling (the mere fact that you were able to write your post shows that you are doing the healthy thing by accepting your feelings).

Keep coming here and talking to us. We understand and are here for you.
post #37 of 96
this grief...is so normal. you're mourning the child you should have had...and it takes such a time to accept that you've had the one you were meant to.

i remember when raegan was little...her one-week check-up when they said, "well, she's too floppy..."

i remember it was almost a cross-roads...a choice to embrace her, or to let her go, emotionally. it would have been so easy to harden my heart, to NOT allow her to get any deeper into my soul; it was in shock for three days.

and then i made up my mind. i researched, i searched, but most of all...i loved. amid the tears, the pain...the absolute aching loss...i just let love lead.

ever so gradually...joy trickled in. may it also do so for you.

post #38 of 96
I also wanted to send a your way. This board is a wonderful source of support. Surround yourself with those you love and those who love you. Together all of you will get through this.
post #39 of 96

You are doing such a great job with Nathaniel! It really is so hard to let go of what you thought your child would be like and embrace the one you have. I hope that you can come here to cry, shout and share your joys and sorrows.
post #40 of 96

Sending you strength. These mamas have good advice. One day, one moment at a time. You can do this . . . .
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