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Here I am...nowhere else to go....

Are you part of the NICU club? Do you have a child who is still struggling with the effects of being born too soon from preeclampsia? Share your concerns and stories here among parents who have been there.

Here I am...nowhere else to go....

Postby mom2ella » Sun Jun 14, 2009 06:27 pm

by mom2ella (238 Posts), Sun Jun 14, 2009 06:27 pm

I am feeling completely overwhelmed. I have a child at home with a trach and on a vent. Thank God, he is doing very well and is the best baby ever. His "care" doesn't overwhelm me at all but I'm SSOOO tired of everything else. I appreciate all the help, but I am SO tired of having people in my house 24 hours a day. I am going through a really bad divorce, that just became the worst it could if you can imagine, and I have NO privacy. My mom is my biggest source of help but she's starting to overstep her boundaries with Ethan and she's not the kind of person that takes it lightly when you try to talk to her about something like that. She's also not fully trained so even though it is helpful for her to be here, she cannot be left alone. I feel guilty that I cannot get all of Ethan's physical therapy exercises in every day and he's still not even sitting up. I'm tired of waiting, waiting, waiting for things to happen. I need to see a little more progress. I know I shouldn't complain because he's doing great, but I feel like there should be something else that I can do. I feel myself losing my patience with him quicker. Not like in a bad way...just not taking as much time to get him to eat or to help him sit up and that stuff. I feel like I have post partum depression, only 13 months later. I cannot go back to work because I don't have enough reliable nursing, my ex was paying half the bills but is now only paying a small amount of child support, we lost Ethan's SSI (long story) and I'm afraid I'm going to lose everything. Some days I just feel like checking myself into a hospital just so someone else can take care of me and I can have some time to myself for a couple days. Chad is the only other person besides the nurses that is completely trained to be alone with him but he's too busy having a good time in his own life. He thinks parenting is visiting for a few hours a week, taking pictures to brag and maybe giving Ethan a bottle every now and then. I just asked him to stay one night and take care of the baby so I could get away for a night and he won't do it unless I tell him where I'm going. This coming from a man that started having an affair when I was 6 weeks pregnant with Ethan. I went out Saturday and he called me 31 times. I cannot even have a decent night out. I feel like all this is affecting my parenting so I have to feel guilty for that on top of the fact that his dad left us and other people HAVE to help me take care of him. UGHHH...I'm so overwhelmed. Thanks for listening to me vent.
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Re : Here I am...nowhere else to go....

Postby fiona » Sun Jun 14, 2009 08:10 pm

by fiona (5767 Posts), Sun Jun 14, 2009 08:10 pm

Oh my dear Nikkole,

I can't even begin to imagine how tough things are for you right now. You've done such an incredible job looking after Ethan and to have to deal with a difficult relationship at the same time, is more than most could bear.

It sounds to me - and I'm absolutely no expert - that perhaps its time to find yourself a counselor. Someone you can offload all your deepest, most troubling feelings, without having to worry about hurting anyone.

It also is not good that you are having to shoulder so much of the care of Ethan. Would it help if your mom was actually fully trained up? That may be a way you wouldn't have to always be in such close proximity, while at the same time offering you the chance to take a much-needed break.

As for Chad, I am so sorry he's proven incapable of supporting you and Ethan. I can't see why you should feel any guilt about a grown adult's immature behavior.

Please try and take a step back and find a way to get more help. I don't know anything about US healthcare insurance, but it seems incredible to me that you are having to cope in this way. I hope others will have concrete ideas about how to maximize your entitlements - or of non-profits who may have programs to help.

Mostly though, I wish I could give you a big hug.
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Re : Here I am...nowhere else to go....

Postby rebeccac » Sun Jun 14, 2009 09:19 pm

by rebeccac (761 Posts), Sun Jun 14, 2009 09:19 pm

I am in agreement with what Fiona said....

Could you call your case manager from the NICU and see if there is any kind of respite care available in your area? At least that way you could get away for a while leaving Ethan with people who are medically trained.

((Big hugs to you and Ethan))
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Re : Here I am...nowhere else to go....

Postby trish » Sun Jun 14, 2009 10:12 pm

by trish (2949 Posts), Sun Jun 14, 2009 10:12 pm

Oh honey - you are having to deal with so much!! I wish I knew more about SSI or other ways to get some help for you. Can your mom get fully trained? If she is willing that sounds like it would be a big help for you.

Please don't feel guilty that you have to have people help you! My kids are healthy & I still get overwhelmed & thank God for MDO program at the Y that my older 2 can go to a few hours a week.

(((HUGS))) I wish I could do more mama - you deserve it!!
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Re : Here I am...nowhere else to go....

Postby dolphinjen » Sun Jun 14, 2009 10:36 pm

by dolphinjen (200 Posts), Sun Jun 14, 2009 10:36 pm

Is there a social services organization that provides respite care by nurses?

I'm so sorry you are going through so much, and that your ex can't even help with his own child. It just seems to me there's got to be some organization that can help. I hope you are somehow able to get some rest and space from the situation.
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Re : Here I am...nowhere else to go....

Postby rosemary » Mon Jun 15, 2009 00:30 am

by rosemary (2360 Posts), Mon Jun 15, 2009 00:30 am

Nikkole, you have been through so much. You deserve some time out and some personal space. What about a set time each day where you have full coverage, and spend a bit of time out of the house? If there is anything that I can find or think of that might be helpful, I'll let you know. My thoughts are with you. Sending you love and hugs.
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Re : Here I am...nowhere else to go....

Postby jamie w » Mon Jun 15, 2009 05:50 am

by jamie w (978 Posts), Mon Jun 15, 2009 05:50 am

You have been through and are still going through so much. It is not right that one person should have to endure so much! I agree with all of the PP. You need some time out and away to go just be Nikkole. Even heakthy kids are trying at times and I think all parents lose patience at some time or another. I don't know the circumstances around Ethan's SSI but at the hospital where I work we have something called Medical Third Party that tries to help people get the funding they can so they can pay their hospital bills- most of them fight for SSI on the side and don't require any money up front. You might see if the hospital Ethan was at has any service like that. Also, I think even if you don't qualify for regular SSI you can still get some type of respite service paid for through them. I have a friend that has used that and I'll check into it when I see her again soon. I wish I could just come help you! As far as Chad- I cannot imagine the pain he has caused you and you deserve so much better! Don't give up, you are doing a fabulous job! (((HUGS)))
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Re : Here I am...nowhere else to go....

Postby annes » Mon Jun 15, 2009 07:49 am

by annes (2527 Posts), Mon Jun 15, 2009 07:49 am

Nikkole, I agree with everything the rest have said, and I am sending you an e-mail. I wish I could come over in person and chat and give that beautiful boy of yours a little snuggle.
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Re : Here I am...nowhere else to go....

Postby mada » Mon Jun 15, 2009 01:20 pm

by mada (4081 Posts), Mon Jun 15, 2009 01:20 pm

I just wanted to send you a virtual hug. You are an amazing mama and have been through the ringer!! Please be gentle on yourself. I too wish I could come and help you out!!!
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Re : Here I am...nowhere else to go....

Postby amanda » Mon Jun 15, 2009 02:32 pm

by amanda (2216 Posts), Mon Jun 15, 2009 02:32 pm

I wish that I could come and help and get you some long term help as well. I can't imagine how frustrating this is for you - I'm so sorry that things are not moving faster and easier.

I will say this - your little man is a heartbreaker and he's making great strides - you are a wonderful mom and it's totally normal to be frustrated one minute and upset that you feel that way in the next - it's got to be even harder when you are having to deal and handle everything else.

I'll be thinking of you - I still say a prayer for Ethan and he's still on our prayer list at church - I'll add you too.
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