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Author Topic: NICU support group?  (Read 3036 times)

AngelLily03

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NICU support group?
« on: January 26, 2012 at 04:12 PM »
I was hoping someone here could recommend a good support group for NICU or offer some advice..  We had our son last week 35w 1d after 10.5 weeks of bedrest for PTL.  Baby was taken right to the NICU due to hospital policy that any baby under 36 weeks has to go in.  It took 2 hours to get an IV in and he was a little grunty, but other than that he was great.  He's been making huge strides and at one point looked like he'd come home today. 

I'm just having a hard time coping with him being there, having to wait for someone to be available/willing to watch our other kids for me to see him, and feeling like he's not getting the attention he needs due to "the more serious babies in the unit" ( seriously straight from the nurses mouth, the Dr's don't spend as much time with him becuase of the more serious babies in the unit).  He is eating, and finally gaining, no respitory support, and looks incredible.  Only waiting on his temp and we've been stalled at 27.3 in the isolette for a few days now, they wont even try to move him to a crib til 27.  And now they won't try to move the isolette down until he gains more weight.  My kids are slow gainers.  I'm just so frustrated, I know if he were home or had come to us none of this would be an issue right now, but because he's there now they won't let him go.  I"ve seen a number of babies come in with the same issues he had and they are gone, and really feel he'd be fine at home.

Any suggestions on where to go or what to do?  I'm starting to resent friends and family for saying they would be there to help so I could be with him anytime and now bail at the last minute or are unavailble.  Husband just isn't understanding and I can't get him to take long lunches, go in late to work so I can see baby more.  He thinks one visit a day is fine and can't understand why I"m so upset about it (I usually manage 2 if I can get a sitter, today sucked it up and when to the 5:30 am so I could see him twice).  Family isn't getting it either and keeps lecturing me about taking it easy and not to be focused on the little things like his temp (you know the thing preventing him from coming home).

I would never do anything to endanger his heath and if he weren't in great shape, setting off alarms, loosing weight, or not eating what he needed too I wouldn't be worried about gettting him home.  The really pessimistic part of me is starting to wonder if its a money thing, the slower they go, they longer they keep him, and the more money they make.

Sorry for the rant but hope someone here can steer me the right direction.  I don't like feeling like this and its not fair to my kids or family.  And yes I have called my OB and they say this is all normal.

celticmama

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Re: NICU support group?
« Reply #1 on: January 26, 2012 at 06:10 PM »
It's been my experience with various NICUs that the "squeaky wheel gets the grease". When it got to the point where I felt like I could manage my baby's care (and mine!) better at home, I always ask for a "sit down" meeting with the neonatologist and the charge nurse. And, I try to be as unemotional as possible and lay out what I'm going to say BEFOREHAND. I will tell you this: my babies who've been in NICU (3 of the 6, so far) have always come home the day I've had my little pow-wow.  ;)

Don't forget that YOU are his Mama. YOU love and know him better than ANYONE. And, YOU have to be the one to advocate for him (yes, even with family members!), because no one else will.

Deep breaths. You can do this. Take charge of the situation; you will feel better having some control back.

Hugs and prayers.
~Mary Kate~
Happily married to Kyle for 17 years
Blessed to be Mama to:
Killian 16, Joe 13, Maeve 11, Jack 9, Eamon 4, Faith 2, & our 3 saints in Heaven (2 m/c and our full-term baby born still, Fiona May).
Happily awaiting our latest blessing with a EDD of 4/23/12 (del. date 3/12/12)

sjaz09

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Re: NICU support group?
« Reply #2 on: January 26, 2012 at 06:19 PM »
I agree. I would request to talk with the head neo or be present for rounds ready to fire with the questions and the "plan" to get him out of there.  Has your pediatrician been there yet? That might also speed up the process if you can explain your frustration/concern to them. I can totally understand your frustration.

I am on another board strictly for preemie parents, it's called thepreemiepalace, you have to be recommended and invited by a member, so if your are interested let me know...

Good Luck.
Mommy to Haley (gest. 28 week 1 day) born June 2009.
Hoping for a healthy Baby Boy due March 8, 2012; Bedrest @ 22 weeks for IC

Angela

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Re: NICU support group?
« Reply #3 on: January 26, 2012 at 09:52 PM »
A really wonderful resource for preemie parents is https://www.inspire.com/groups/preemie/. They will understand exactly what you are going through. They're an amazing group!

If you need more support from family and friends, don't stop asking. And if you need more support from your husband, tell and don't ask. He didn't just deliver a baby. He can go in early and come home early. I'm so sorry the challenges continue. Being away from your newborn is one of the worst feelings in the world, and most people just don't get it. The ladies at the Inspire Group totally do.  Sending prayers for strength and that your little guy will be home with you soon.

AngelLily03

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Re: NICU support group?
« Reply #4 on: January 26, 2012 at 10:35 PM »
I'm feeling a little better after our visit tonight.  For the first time in a few days DH and I were able to go in together and really talk.  The nurse said as long as he gains again at his weigh in they will try to wean again to the crib tomorrow.  His temp was night and high when I took it so just hoping and praying.  All the nurses keep commenting on how good he is doing, making the fact he is there so much harder.

His ped doesn't have privalges at this hospital (but wanted me to deliver there, he likes it better than the other one).  I was going to call him today but wasn't really able to talk coherantly and now that I'm feeling better will try again tomorrow.

Sadly I can't be there during rounds most days due to my sitter issues.  I may get lucky tomorrow as my sister is coming over and I'll be there during rounds.  When I have been there during rounds I get the "he's with more serious patients" talk and try to wait them out.  The nurse did hunt him down the other day for me.  Another indication that he wasn't getting the full attention of the Dr's was it took them a few days to up his required feeds, as soon as they did that he started to gain weight.  I plan on letting them know when I'll be there tomorrow and insisting that the Dr. come over to see me.  I know there are sicker babies there but I want mine home.  I guess I've just been too polite about all this.

DH and I did talk and he reminded me that he's working now so he can be home for the first few days Bryce is here, to help, ensure we get to appts, spend time with him, and make sure I rest.  I know all that but it doesn't make things any better.  Family is still a no go, but its all legitimate reasons from working to being down with a migrane (the cause of said migrane is what's infurating and out of my control).  I tried and failed to screen calls today resulting in a 2 hour lecture from my dad about taking care of myself and not fixating on tenths of a degree...he is not getting that's whats keeping him from coming home.  And after hanging up with me he called and lectured my husband.  I can count on one hand how many times he's seen me cry since Jr. High and never to the extent I was yesterday in the full on hysterics...and he didn't even see/hear it.  So I am trying to figure out how to say in the most loving way possible to back off and leave me be for a little bit.

When I see the Dr. tomorrow I will be more insistant about him coming home, the nurse gave us the going home speech a few hours ago and said she didn't see why he wouldn't be home by the end of the weekend.  She also pointed out we wouldn't even know about the temp issue at home (my whole point exactly).  I so desperately want this to be true but am hesitant to get me hopes up, I coudln't stand it to think he was coming home and have it not happen.  I understand and respect the hospitals policys but think we're getting to the point where this is silly.  If I'd just made it  more days they most likely wouldn't have even taken him up.  If they did for the grunting he would have been back down in a few hours (a grunting 37 weeker came in the other day while I was there and was back down with his mom in a couple of hours even though he set off the O2 saturation alarm a couple of times and his temp was a high 97).  Angela I'll check out that site and sjaz lets see how the next couple of days goes but I may take you up on it.

Taya

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Re: NICU support group?
« Reply #5 on: January 28, 2012 at 10:50 PM »
Way to go mamma! Keep up the great work!!! You have to be assertive and tell them how it's going to be! Hope he is home snuggling with you right now!!!

AngelLily03

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Re: NICU support group?
« Reply #6 on: February 01, 2012 at 12:31 PM »
Just wanted to update this.  I finally was able to call my ped last Friday...I just asked to talk with him about how to approach the Dr's about how everything was going.  The nurse had me fill her in on everything in and said he'd call me back.  By the time I went to the hospital for my visit that afternoon I still hadn't heard back and was determined to camp out until i saw the Dr.  He'd gained weight the last two nights but were still not wanting to move the temp down in his isolette...even when I got there the nurse said it would most likely be another day before they tried.  I was a little deflated and said to please have the Dr. come talk to me when he got a chance, I wanted to talk about why progress had stalled and not on Bryce's part.  She also said my ped called in for an update.

A half hour later the nurse came back and said we were going for broke and going for the crib to see how he did.  She asked if I still wanted to wait for the Dr., he was in a conference.  I decided not too since I got what I wanted.  Bryce came home the next day, had no problem at all with his temp in the crib...one nurse telling us she didnt' know why it hadn't bee done days ago.

So we were at our ped and he asked if things started to happen after he called on Friday.  He looked over Bryce's chart and informed the Dr. that he didn't see any reason that this baby shouldn't be home and what exactly was the hold up with everything.  Since he knew certain benchmarks had to be met it was time to try the crib, not to worry about inching the isolette down...I LOVE my ped.  He's been doing this for decades now and know he would never do anything that would hurt the baby.  He agreed it was a little of the focus thing and a little complacancy.  I aplogized for putting him in a position to have to question other Dr's, and I just wanted advice and justification that my intuition was right.  He said he'd treated the NICU Dr's kids and now grandkids and they'd been friends for years.  They'd even practiced together at another hospital in the area.  So lesson learned, get your ped involved early and often,  thanks for the adivce everyone!