Family members not getting it - Mothering Forums

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#1 of 30 Old 07-12-2007, 11:44 AM - Thread Starter
 
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Did anyone else deal with family members who were insensitive during (and after) their hospital stay? I am still a little upset with DH's family because they we pretty insensitive while DS was in the CVICU. DH's brother did not even come to visit and he was in the area. He never even met our DS at that point and DS was close to death. He played golf instead. Then 2 days after DS's surgery (when he was still very critical) DH's brother scheduled a tee time for them to play golf : DH didn't go. Then DH's grandmother was down to visit during our hospital stay and called to make sure he was gonna come home to visit her - this was also during the critical time. DH did go home to visit her, and he went to the movies, then out to dinner with his family (it was on his birthday) and I stayed at the hospital (90 mins away). I'm still a little mad about that. The last thing on my mind at that point was going out to have fun, I just wanted to be there for DS.

I'm still a little upset about all of this. His family just acted like there was nothing wrong at all, like it was just any other day and couldn't understand why he didn't want to come hang out. Being there alone at the hospital sucked and it was scary. People kept saying, go out and do something fun, let the nurses do their jobs. I just couldn't, I felt like I had to be there to keep an eye on things. One nurse missed a dose of DS's pain meds and he was screaming, if I weren't there to tell her that the dose was missed he could have been in pain for hours. Another nurse almost gave him a double dose of fentanyl b/c she didn't write down the last dose time. And another time he was turning purple while a nurse was on a personal call and I had to run out and get someone to help.

I think the most annoying comment was when DH's brother told us to just leave the baby with his mom so we could all go out together, this was the day we got home from the hospital. He just didn't understand why we were being so "overprotective".

Zen doula-mama to my spirited DS1 (2/03), my CHD (TAPVR) warrior DS2 (6/07) & a gentle baby girl (8/09)
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#2 of 30 Old 07-12-2007, 01:23 PM
 
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s: I am so sorry that you have to deal with this. It must be so hard having people like that not understand. I think you did the right thing by being their with your child. Nurses are nurses, but you are his mother. Good for you being there and being protective!!

I cant give you any advice on having insensitive family members, luckily even my extended family was a part of it. But just wanted to send out a s: to you...

single mommy to identical twin girls (3/06) Non-traditional mama just : through life.
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#3 of 30 Old 07-12-2007, 01:53 PM
 
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Even very sensitive family members don't always get it. my dh made me take the subway to the hospital 1 week after having a C-section because he was worried about the cost of taking a cab! when my mom found out she had a hissy fit (she had a preemie at 33 weeks and a C-section) some people just don't get it know matter what you do.

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#4 of 30 Old 07-12-2007, 02:12 PM
 
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Oh, I understand.

My mom still does not get it.

My brother never came and saw DD in the NICU.

I honestly think that if you have not been there yourself you have any clue what it is like for a parent.
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#5 of 30 Old 07-12-2007, 02:20 PM
 
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No one in my family came to see any of my kids during their nicu stays. In fact 3 days after my twins were born everyone in my family left for a Christmas vacation in Vegas and never even called to see how my babies were doing. Actually thinking about it they didn't even know my babies came home until I called because they were being readmitted to the hospital, 2 weeks after they came home, for rsv. My mom said "I didn't even know they came home, guess you should have kept them there for a few extra weeks."
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#6 of 30 Old 07-12-2007, 03:13 PM - Thread Starter
 
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No one in my family came to see any of my kids during their nicu stays. In fact 3 days after my twins were born everyone in my family left for a Christmas vacation in Vegas and never even called to see how my babies were doing. Actually thinking about it they didn't even know my babies came home until I called because they were being readmitted to the hospital, 2 weeks after they came home, for rsv. My mom said "I didn't even know they came home, guess you should have kept them there for a few extra weeks."

Zen doula-mama to my spirited DS1 (2/03), my CHD (TAPVR) warrior DS2 (6/07) & a gentle baby girl (8/09)
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#7 of 30 Old 07-15-2007, 12:08 AM
 
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I was really blessed because my mother, my brother, my midwife and many of my dear friends totally got it and supported us 150 percent. Maybe because I mostly associate with a birth oriented crowd. My mother even pinch hit on nights when I was exhausted and needed some extra sleep but didn't want my baby alone in the NICU and also would come up to sit with me by the isolette if I was lonely or scared. She was either with me at the hospital or with my other children at home every minute she wasn't at work for two solid months. My inlaws got that it was serious (one twin died right after birth so that was a clue) but now are pretty insensitive about the fear and grieving that still is present with us. His sibs don't even recognize that maybe it might take a few years to work through losing one and nearly losing another child. We just passed the two year mark a couple weeks ago and not one of them called or wrote or emailed him. Fortunately they aren't the near family so it doesn't affect me most of the time.
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#8 of 30 Old 07-15-2007, 12:38 AM
 
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Oh yes, I have pms too so if I sound a bit uh pmsy you know why!

Since Maggie was there for 3 mos I got to see it all from day 1. Sadly the same people who could be great one minute, would do something totally different the next : Also, if you have a long nicu stay or even with a critical situation like the OP said, you most likely will hit a holiday in there.

Mine was easter. Maggie was 8 weeks old and on Good Friday might have needed a spinal tap. And as most here know the babies can be stable and great one hour and the next hour have something huge happen. So Maggie was fine all week and then on Thursday got an infection like most nicu babies do. So one thing lead to another and she might need one on Good Friday. Well, thankfully she didnt but to say it was gut wrenching would be an understatement. Then the recovery. After being up for 2 nights straight worried sick about a call in the middle of the night (we all know that feeling) and then the falling action, by Easter we were dead tired to the world. Bob fell asleep on the sofa around 11am.
Well this is not an issue to SIL who had invited us that week. We already were not feeling up to extended family plus her family who had questions upon questions for us and we already dealt w Bob's family the last few days. As I was trying to explain that morning why we were not attending, while I was saying "bob just fell asleep on the sofa after we..." She intrupted me and said really pissy, "well I gotta go, we do have an egg hunt you know" and hung up. Several months later when we were talking about someone needing a spinal tap, I said "Yeah Maggie almost had one" SIL said- When? I said Easter weekend. "Why didnt you tell me???" I replied I tried, you hung up on me. " Then they came out and said they were so hurt that we didnt fill them in on what was really happening w Maggie and they were hurt we didnt feel close to them. :

Like I really care who needs to hear what when I have a child in critical care. I ended up saying this conversation is on hold until one of your children spends 3 or more months in the hospital. Then you can tell me how terrible I was to you.

But, in all fairness some people handle things different than others. Not that I would schedule a tee off time during my nephew's heart surgery but even my closest people during this ordeal who also were in pain could be a problem. MIL said one night after a dinner out when we were leaving to go to the nicu- you guys need to relax. I replied - tell me how you relax when one of your children is in the hospital. She understood but was trying to help. She also said later it was very hard for them and my parents also said this- to see DH and I in so much pain plus their grandchild was too.

I am glad your ds is doing better and I know what you're going thru picking up the pieces. Sadly this ordeal like any teaches you who your real friends are.

"The true joy of life is the trip. The station is only a dream. It constantly out distances us."
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#9 of 30 Old 07-16-2007, 06:26 PM
 
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Oh, I understand.

My mom still does not get it.

My brother never came and saw DD in the NICU.

I honestly think that if you have not been there yourself you have any clue what it is like for a parent.
I wholeheartedly agree with this!

My mom actually called me IN the NICU to tell me that I need to go home because afterall, I did have other children who needed me. I couldn't even say a word, I just hung up on here and promptly proceeded to start crying. And since we were there over Christmas we spent the night as a family at the hospitality house which appalled pretty much everyone because we "messed up" all of the regularly scheduled events.
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#10 of 30 Old 07-16-2007, 07:02 PM
 
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I mentioned at Dinner the other night that it looks like DH will be gone for military training over Christmas, and I'm thinking of flying out to him to spend the holiday, rather than he fly home. People were appalled at how I could Skip Christmas. Ummm No, I'd just rather my husband not have to spend 2 days of his Christmas training break from a very challenging school traveling. And I'd rather be with him than them.
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#11 of 30 Old 07-16-2007, 11:12 PM
 
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No one in my family came to see any of my kids during their nicu stays. In fact 3 days after my twins were born everyone in my family left for a Christmas vacation in Vegas and never even called to see how my babies were doing. Actually thinking about it they didn't even know my babies came home until I called because they were being readmitted to the hospital, 2 weeks after they came home, for rsv. My mom said "I didn't even know they came home, guess you should have kept them there for a few extra weeks."

single mommy to identical twin girls (3/06) Non-traditional mama just : through life.
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#12 of 30 Old 07-17-2007, 12:18 AM
 
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We still cant celebrate Valentine's Day and this year we didnt do anything for Easter. I guess it was still raw in our hearts. And everyone else here too. :

"The true joy of life is the trip. The station is only a dream. It constantly out distances us."
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#13 of 30 Old 07-17-2007, 12:55 AM
 
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This touched a chord with me too - with DD, I felt like everyone except my DH didn't get it. Even my dad (with whom I have a really close relationship) hurt me deeply when she was 3 or 4 days old by saying everything's fine now (uh, no it's not) let's not talk about it again. But the deepest wound was with my mother-in-law who stood around hours after my c-section while I vomited and then threw a fit b/c DH told her he didn't want her spending the night at the hospital with us....

With DS, the situation was much more serious and I had had a really rough time with PTSD and depression through the entire pregnancy - my parents were a godsend and everyone else was just shut out b/c I knew they wouldn't be sensitive. MIL still managed to get some zingers in - including a tongue-lashing of DH after he had spent two hours waiting for the central line to be put in (it should have taken 20-30 minutes, but in the end was just fine). And by suggesting that she should stay at the hospital with DS while we went home, in case something happened... (And that would accomplish what??)

But still while DS was in NICU at the children's hospital, everyone kept encouraging me to go to home /c DD missed me - including DH. Just what I needed to hear.... thanks.

I realize now that in the crisis the world closes in on you - but it doesn't on everyone else, no matter how concerned they are. And people's true colours come through - my relationship with MIL is only as a courtesy to DH now.

Michelle, mama to Isabelle (03/04) and Tom (02/07)
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#14 of 30 Old 07-17-2007, 03:17 AM
 
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Did anyone else deal with family members who were insensitive during (and after) their hospital stay?
I had to, too. I had kids years after both of my sisters had theirs. I had always figured that once I joined their "ranks", I would feel closer to them. Instead, my first child was born 2 1/2 months early, so DH and I got quite a different introduction to parenthood than my sisters did. The fact that neither of them had ever had a child hospitalized, let alone had a preemie did not stop them from trying to tell my how I ought to react to the situation. Even after Zoey was discharged, the useless parenting advice continued, because they refused to understand that preemies don't stop being preemies after discharge. Their behavior after Zoey was born 6 years ago actually still colors our relationship to some extent, even today. Because they totally disregarded the uniqueness of my life-changing experience, it is a little hard for me to feel they really care about me or my family. The emotional pain from listening to my sisters and my SIL swap labor stories over the turkey at the first Thanksgiving after both Zoey and SIL's kid were born - with no regard for the fact that I would have given years off my life to be able to share in the discussion - left me with a distaste for family get-togethers that continues to this day.

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and Zander, FT, now 2
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#15 of 30 Old 07-17-2007, 11:21 PM
 
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I wonder if thats my issue because I used to not exactly love holidays etc but not dislike. Now I hate them. We are going away the week of thanksgiving to St Martin. We are bowing out on the family xmas celebration but I have always wanted to do that. Is it because of this or I just really dont feel like spending a holiday w family members since I lead a different life than they do? And maybe this just proved to me, I really dont enjoy spending these events with them??

who knows?

"The true joy of life is the trip. The station is only a dream. It constantly out distances us."
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#16 of 30 Old 07-18-2007, 05:35 AM
 
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I don't visit with my dad and step-mother anymore because my baby was a premie. My stepmother smokes indoors, when we wouldn't go to their house she yelled at us, saying we were ungrateful.
She told me all sorts of things, like we were going to name my child something she couldn't pronounce, "I hope you aren't going to be one of those mothers who never leaves they house after you get you son home." So much unwanted and unhelpful advice, and she got offended if I explained why we weren't doing things the way she did in the 1950s.

To be "fair", she would have come up with another reason to try and divide me from my father.
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#17 of 30 Old 07-18-2007, 11:17 AM - Thread Starter
 
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I don't visit with my dad and step-mother anymore because my baby was a premie. My stepmother smokes indoors, when we wouldn't go to their house she yelled at us, saying we were ungrateful.
She told me all sorts of things, like we were going to name my child something she couldn't pronounce, "I hope you aren't going to be one of those mothers who never leaves they house after you get you son home." So much unwanted and unhelpful advice, and she got offended if I explained why we weren't doing things the way she did in the 1950s.

To be "fair", she would have come up with another reason to try and divide me from my father.
Wow, that is awful. I'm sorry you have to deal with that.

Zen doula-mama to my spirited DS1 (2/03), my CHD (TAPVR) warrior DS2 (6/07) & a gentle baby girl (8/09)
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#18 of 30 Old 07-19-2007, 10:21 AM
 
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I dealt with that too. My dh was an ass about it all, we seperated before the baby came home. He was in for 2 months, and the only people allowed in to see him were parents and g.parents. My inlaws came once, said he was too small and left.
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#19 of 30 Old 07-19-2007, 10:29 AM
 
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I am shocked and appalled. How terribly sad I am so sorry for you
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#20 of 30 Old 08-04-2007, 05:18 AM
 
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Did you guys find that after a certain period of time people expected you to be "over it".

I'm currently dealing with this with my extended "family". Most of whom seem to believe that just because Erin's now in special care and we know she's not going to die that I should be okay. For the most part they don't seem to understand that just getting up every morning to spending the day at the hospital is a trauma all of its own.

I don't really know what to do, but I know my relationships with a few of these people will never be the same. That's even assuming we have a relationship anymore.
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#21 of 30 Old 08-04-2007, 08:43 AM
 
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Did you guys find that after a certain period of time people expected you to be "over it".

I'm currently dealing with this with my extended "family". Most of whom seem to believe that just because Erin's now in special care and we know she's not going to die that I should be okay. For the most part they don't seem to understand that just getting up every morning to spending the day at the hospital is a trauma all of its own.

I don't really know what to do, but I know my relationships with a few of these people will never be the same. That's even assuming we have a relationship anymore.
That is appalling!! Your baby is STILL in the hospital - and they expect you to be over it already?!?! Over what will be one of the worst times of your life?!?! How are you supposed to be over it when it is still going on? I am with you on the part about just dragging yourself to hospital being hard, even when things are going well. Zoey in the NICU for 9 1/2 weeks. The first couple of weeks were hard, of course. Then it got a little easier, because she was not critical, and she was taking steps forward, like getting off CPAP and taking bottles and learning to nurse. Then things got hard again. Before Zoey was born, an NICU nurse told me that most babies go home at 35-36 weeks. I wish she had not told me that because when Zoey hit 35 weeks with no sign of being ready, I got really depressed again. When she was healthy enough for me to start thinking about going home (but before she was ready, of course), she'd have an apnea or brady, and her discharge "clock" would be reset again (she had to go 5 days w/o an A or B). Then there was the day that I got to the hospital to find that Zoey had had an episode overnight, only to have my mom call me at the hospital : to tell me that my nephew had been born earlier that morning. So I get that the step down nursery is better because your baby is less critical, but that emotional roller coaster ride has not stopped yet.

If these people don't "get it" now that your baby still needs to be in a hospital just to live, they won't get it later, when you may need to do things like isolate your baby during RSV season or if you need to deal with long term issues like going home on O2 or going to the eye doctor for ROP followup. Can you stay away from these people? There were people I had to stay away from after Zoey was born; they irritated me so badly. If it hurts a relationship, well that's the price they'll have to pay for not being there (even emotionally) when you needed them.
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#22 of 30 Old 08-04-2007, 10:44 AM
 
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I don't really know what to do, but I know my relationships with a few of these people will never be the same. That's even assuming we have a relationship anymore.
Man you hit the nail right smack dab on the head. And it took me months to figure this one out! I am 15 mos out of the nicu and I just figured it out a few months ago.

And Paula, ITA!! I cannot even count how many people didnt get why last year we would not go to parties, playdates, holidays, loud restrnt (still wont), the mall, places w huge crowds etc. Not only because of RSV season, but Maggie like most nicu grads, had a huge problem w noise noise noise. Last night my brother and his family were w us at my parents house and she cried most of the time. They are the loudest people on earth. And yes, we have certain issues w them because we didnt tell them word for word everything that was going on. Also, as a 18 mo old, Maggie is a bit leery of some people, this family incld so what is wrong with her??

"The true joy of life is the trip. The station is only a dream. It constantly out distances us."
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#23 of 30 Old 08-04-2007, 11:49 PM
 
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Yes I get that a lot.

My mom has no clue why Syd's latest weight loss problems have me nearly freaked out. Why am I freaked out? Because we could end up back in the hospital with all the devaluing of parents that MY Nucu experience taught me.

Mom also does not understand why when anyone asks when I'm having more I react in fear.

It has taught me very clearly what I cannot expect from her. It is painful, but I just have stopped hoping she will understand.
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#24 of 30 Old 08-05-2007, 12:34 AM
 
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"I hope you aren't going to be one of those mothers who never leaves they house after you get you son home." So much unwanted and unhelpful advice,
My family was understanding & sensitive but was unable to spend time at the NICU. I wish we w/h/h someone to ‘fill-in’ especially when one baby was home and the other was still in the NICU. We have friends that are still upset with us because we didn't take our twins to their house to visit them shortly after leaving the NICU. (We don’t see them much anymore.) I also was told by many friends and neighbors that my children were not 'socialized' enough as babies. : We were told by the NICU nurses not to take them in public if it's not necessary. Plus I was overwhelmed and had no desire to cart them around town. How much socialization does a newborn need. Is the mall or grocery store really that educational for a four month old? I admit I kept my children home more than most; out of concern for their health, because it was difficult for me to do on my own, they would get over stimulated and between therapies and naps our day was filled at home. Now that they are older and healthier it is a different story although my DH and I still wash/scrub down carts like crazy people.

We did miss my grandmothers annual 4th of July birthday party. The family asked us to stop by on the way to the hospital – we didn’t. I wish we w/h. It was her 101st birthday and she died six months later. We were so consumed by the NICU experience nothing else mattered.

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"If these people don't "get it" now that your baby still needs to be in a hospital just to live, they won't get it later, when you may need to do things like isolate your baby during RSV season or if you need to deal with long term issues like going home on O2 or going to the eye doctor for ROP followup. Can you stay away from these people? There were people I had to stay away from after Zoey was born; they irritated me so badly. If it hurts a relationship, well that's the price they'll have to pay for not being there (even emotionally) when you needed them.
So true! It is never ending. I found some people irritated me so much I had to distance myself. Like the neighbor who, knowing my children are in therapy, would say "I know Charlie is SLOW, but what is he able to do? Oh... too bad because my twins spoke in full sentences as they exited the birth canal" - : ok maybe I exagerated her comments a little.
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#25 of 30 Old 08-05-2007, 11:35 AM
 
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Did you guys find that after a certain period of time people expected you to be "over it".
Yes, my MIL. She is a heavy smoker and has lived in the same house for 35 years. When we brought ds home she thought we would then pack up the car and then drive up there and come for a visit. Ummmm. no. Close to a year later and I still refuse to go up there, she thinks we are doing it to spite her, and that he is a normal baby now. And that the "preemie" excuse, is "just that":
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#26 of 30 Old 08-05-2007, 11:27 PM
 
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It was hard to explain to people why we couldnt leave the house the first few weeks w Maggie. She was also on monitors and O2 which was a pain to lug around until you were plenty used to it. Much less the germs etc and stimulation. We did go to my niece's graduation party two weeks after she was home but no one came near her on my SILs strict rules as we came in (she is also a nurse) but my FIL held her so I could eat. He was used to holding her since he did a lot of holding of her when he visited her in the nicu etc so that was fine. We always say she is Grampa's baby.

"The true joy of life is the trip. The station is only a dream. It constantly out distances us."
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#27 of 30 Old 08-08-2007, 04:35 PM
 
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Not trying to defend deadbeat family members and friends, but is it possible that they're in denial or scared and don't want to be in the NICU? It can be a very scary place, after all. When my son was born and taken to the NICU, I was terrified. My partner couldn't deal with everything and left the hospital for the night. I'm ashamed to say that I was too scared to visit my own son that first night and wouldn't go see him until the next day when my partner came back and went with me.
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#28 of 30 Old 08-10-2007, 03:49 PM - Thread Starter
 
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Maybe they are in denial. I honestly didn't understand what it was like to have an ICU child until it happened to us. I spent a lot of time in the NICU pumping while DS was in the CVICU so I got to know some moms of NICU babies and their stories. I think people just assume that once you come home, the child is equivalent to a child who was never sick. I thought that before too. : But some of the stories on this thread are just plain awful and I can't chalk it up to people just not understanding.

Zen doula-mama to my spirited DS1 (2/03), my CHD (TAPVR) warrior DS2 (6/07) & a gentle baby girl (8/09)
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#29 of 30 Old 08-15-2007, 02:07 AM
 
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My ds was only 4 weeks early, but he had a lot of medical problems. The hospitals kept transferring him by ambulance to other NICU's because no one could really figure out what was wrong with him. He was in 5 NICU's in 5 weeks. We were given some really horrible (ie fatal) diagnosies as they thought he had a metabolic disorder or something like muscular dystrophy. It was horrible.

Fast forward 5 months, to a Christmas party. My sil was telling a story about her friend whose baby had to have surgery the day after birth. It was scary for the parents, but the baby went home 5 days after birth.

MIL turned to me and said, "I know that you had a hard time with Connor, but at least he didn't have to go through anything like that."

I wanted to freak out on her soooooo bad. I did feel bad about their baby needing surgery, but they were home with that baby 5 DAYS after birth and her life was never thought to be in danger.

My MIL is an idiot. :

I don't think people really know what it's like until they've had the misfortune of living through the NICU experience.
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#30 of 30 Old 08-15-2007, 03:38 AM
 
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Quote:
Originally Posted by paulaf View Post
Can you stay away from these people?
Well if I couldn't before I'll definately be able to now. Long story short the cousins in question are just...I can't think of a strong enough word that can be used on a public forum...so I told them in no uncertain terms that I'll be having nothing to do with them. It certainly simplifies things, even though it still sucks.
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