We're not going home tomorrow

aforst · June 2014

She hasn't had a Brady in at least a week. She had one at 3 am and has had 3 in the last hour. They are talking about drawing more blood to make sure there's not something else that's bothering her.

I'm devastated. I just sobbed on the phone to DH. I don't understand why this keeps happening. I know it could be so much worse but I just want to fucking scream. I don't know how much more I can take. I know I don't really have a choice but to deal with it.

I'm tired of being in this fucking room. I'm sorry, I don't even know how to articulate right now.

I'm just feel like quitting. I know that's not even remotely an option, I just feel like I'm going to break soon.

Thank you for letting me ramble...again. I'm almost tired of talking about it in RL.

ILoveBoys · June 2014

Sorry

Since it had been almost a week would they let her go home on a monitor?

EVA116 · June 2014

I am so sorry. so sorry. Like uconn said you and rant and yell and scream all you want.

jesuisfatiguee · June 2014

I am so, so sorry

LucilleAustero · June 2014

I am sorry you are feeling so frustrated. She will be home soon.

aforst · June 2014

They may eventually send us home with a monitor. I'll have to ask about it.

studyinpink · June 2014

I am so so sorry. I know this is not what you want to hear but I think they are doing the right thing.

As a NICU nurse, I would definitely be concerned at the reappearance of a&b's.

They should/will have a pretty low threshold on deciding to work her up again.

Usually increased a&b's are a sign of infection before everything else follows as I am sure you know.

I am so sorry. I know you want her home so badly but it would also suck to get her home and be re-admited or have an episode at home.

secretsout · June 2014

I'm so sorry. I can't imagine how hard this must be.

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aforst · June 2014

ChickenOnSunday said:
@aforst

Have you talked with anyone about your feelings? For me, our NICU nurses were not only taking care of our daughter's health but also my sanity. They were my therapists. Have you built that sort of relationship with the NICU staff? If not, is there a counselor you can talk to? You need to be mentally strong for your family and the situation you are in is very draining.

I am close with a couple nurses. They also have a therapist that comes in but I find her a little patronizing and not very helpful.

RondackHiker · June 2014

I'm so, so sorry. Massive hugs.

studyinpink · June 2014

Does your NICU have a support group? Usually just made of NICU moms. @aforst‌

jorkz821 · June 2014

I'm so sorry

nikiz628 · June 2014

I am very sorry ((hugs))

aforst · June 2014

Studyinpink said:
Does your NICU have a support group? Usually just made of NICU moms. @aforst‌

I'm not sure if they do. I know they had one for women on bed rest.

I know how bad this is going to sound but I don't feel like talking to anyone helps. The only thing that's going to make me feel better is her coming home. I know how childish that sounds. I know she'll come home eventually and I know that none of this is in my control. I just can't find anything, any type of outlet that helps. I'm sure I'm making it so much harder on myself but I can't seem to help it.

studyinpink · June 2014

It does not sound childish at all. Can't imagine how crushed you are.

You can definitely vent here.

Please keep us updated.

Edit for spelling.

Pips09 · June 2014

I'm so sorry. It is so incredibly stressful. A's and B's can often be the last hurdle before coming home. I'd definitely look into an Apnea monitor and ask her Neo if it is an option for you to be discharged with one.

virgin4lyfe · June 2014

Oh, so many hugs @aforst

I'm so sorry.
You and she are both such great fighters.
It's not childish at all, sometimes life just sucks and it's hard to find ways to cope.
I hope she gets to go home ASAP without any problems.

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MrsT0514 · June 2014

Im sorry mama. We are here for you. Your sweet little girl will be coming home soon enough!

ToastieSimons · June 2014

I am so so sorry. Here's to hoping it's just a fluke and she's home soon!

littlestjerry · June 2014

I'm so so so sorry. I don't blame you for how you feel, I can't even imagine it. I really hope things start getting better soon.

credcat7 · June 2014

What kind of schedule are you keeping at the hospital? Do you give yourself time each day to go outside and get fresh air and not stare at the wall?

I can't imagine what you are going through. Glad you can vent here to get some of the feels out.

SpaceGirlSpiff · June 2014

I'm so sorry

KTdidit · June 2014

I'm so sorry :-( at least you are close on case something were to happen. "This too shall pass"

wiggyslilsis · June 2014

*huge hugs* I cannot even begin to understand the pressure and stress you have on you to stay strong for your family. My only advice is to let yourself feel. It is okay to break down, it is okay to cry, scream in a pillow or whatever you need to do to release.

msdrdg · June 2014

Hugs! Hopefully it is a fluke and she will be home soon.

aforst · June 2014

credcat7 said:
What kind of schedule are you keeping at the hospital? Do you give yourself time each day to go outside and get fresh air and not stare at the wall?

I can't imagine what you are going through. Glad you can vent here to get some of the feels out.

Monday-Friday I get there around 9 am and stay until 6-6:30. I usually don't leave the room unless it's to go to the parents lounge to eat. Some days I don't leave the room at al except to pee. I'm sure this is not a good idea. I'm sure it adds to the stress. I just want to be with her as much as possible. It's really heart wrenching to leave her every night, even after 2 months of this.

Next week I won't be able to go up there during the day bc DS1 will be home with me everyday. I'll probably have to go at night.

I feel like such a downer. I'm sorry guys! I really do appreciate all the thoughts and support. I'm going to drink some wine, let myself wallow in all of this tonight and try to get it together tomorrow

theimpossibleastronaut · June 2014

I'm sorry. I hope you guys get to go home soon!

angelashly · June 2014

I am so sorry that you have to go through this. I don't think you sound childish at all you sound like a mother and an awesome one at that.

At my hospital they use social workers and they can find you groups etc. When you are ready.

And of course you always have us here. Always come here to vent if you need to.

(Hugs)