VENT - mothers of full term babies giving advice on preemies - Page 3

[sehbub]

Kathi, that's terrible. I also had a "friend" tell me that I should take down the photo we have in our living room of DD in her isolette with her feeding tube clearly visible. It was "disturbing." Tough.

And yes, the guilt is terrible, and ate away at me for a very long time, and still does on occasion, when yet another person (at least one a day) comments on how tiny DD is for her age. When it is mentioned that she is a 30wk preemie, the look that inevitably crosses one's face is one of "what went wrong?" In our case, nothing. My pregnancy was completely normal and perfectly healthy until I went in to unexpected labor at 27weeks.

[jkpmomtoboys]

After ds was born and we were at the ped for a well-check, a lady asked me how old he was. After I told her (he was a 29 weeker but a big one at that), she asked me if I was sure...

What?!? No, wait, hold on a minute--let me check his birth certificate...

And my dear, dear, 97 year old grandmother, who I love, still talks about how ds was the size of a roasting chicken....:

[sehbub]

People compare DD to inanimate objects too, instead of just, "her back was the size of the palm of your hand, shoulder to butt."

I do think it's cute when my DSDs talk about their little sister though. They brought her an Elmo doll when she was in the NICU, and DD was smaller than the doll. The girls tell people that, and then the four year old says, "but sje's super strong like me and sissy, and she's getting so big!!" all the while DSD2 is flexing her muscles to show how strong she is.

[Amys1st]

Originally Posted by MCT25

I am so glad we have a preemie/nicu forum. Because my daughter was born at 34weeks and weighed just over 5lbs I got all the "oh she wasn't THAT premature, she's fine" comments.

Meg

But she still was and still has premature issues. I cannot believe anyone would say that but then again I have heard some things!

Some of the babies I saw that were the sickest had 10 weeks on my dd and no one could say shes fine to them.

I think the media shows these micros and how they are beating world records etc so our society thinks they will "be fine". well my micro is "doing fine" and she is 6 mos old and has raked up a 1/2 million in medical bills to be fine. The two smallest babies ever to survive did so in Maggie's nicu - Loyola University Medical Center. One is in high school, the other is about 2 years old now. The 2 year old has a fraternal twin sister who was just over a pound. They are both doing fine. As fine as you can after a 5 mo nicu stay. My home care nurse also cares for these girls. She said the smaller one is doing better but yes both of these will eventually be fine but it will take some time. I dont think people realize that most of these babies should and will have a normal like but they need to get there first. And to get there it might be a rollar coaster ride.

[Finch]

Most people equate weight with health in babies. My patients in PTL often say to me, "oh, but the baby probably weighs xyz pounds now, so s/he should be fine, right?" It's a misconception that most of the general public has, unfortunately. Drives me nuts.

[ApplePieBaby]

Originally Posted by sehbub

Kathi, that's terrible. I also had a "friend" tell me that I should take down the photo we have in our living room of DD in her isolette with her feeding tube clearly visible. It was "disturbing." Tough.

My exhusband once said I should take down pictures of our daughter that died at birth because she was dead and it would disturb the other kids- I told him to take down pics of his dead grandparents first

[boscopup]

Originally Posted by kondonis

I hate when people just meet you and guess your childs age.

I haven't had too much of a problem with this, since DS has always been tall - he looks his age, basically, BUT... When we were ordering lunch one day at a mall restaurant, the cashier asked how old DS was. I told him he was 13 months old. The guy asked if he was walking yet. I said no, not yet. The guy then made a big deal about a 13 month old that isn't walking yet, as if my DS was horribly behind in that area!!! Ok, FULL TERM babies sometimes don't walk until 16-18 months of age! There is nothing at all abnormal about a 13 month old not walking. PLUS, the guy didn't know that DS was 10.5 weeks early, so he was really a 10.5 month old, adjusted!

DS started walking at 14 months, so 11.5 months adjusted- RIGHT ON TIME. There were full term kids on my due date list that weren't walking until 16 months. I could have slapped that cashier! :

[EastonsMom]

I have never had a premeie so I am out of place here but I just want to say congrats to all you moms out there who were blessed enough to become preg. carry and nuture your children, give birth, in what was I am sure uncomfortable and VERY unplanned fashion, and have to deal with the insensitivity of not just friends but family! All children are miracles but these lil angels but a new meaning to the whole procces! I stand up for all of you! I know it probably doen't mean much coming from an 'outsider', but that is my two cents worth!

[sehbub]

It means a lot, EastonsMom. Outsider or not, you're human. Sometimes that's all the validation I need.

[liberal_chick]

I got a "what do you mean he's here for his 12 month check-up? He's 12 months old?" from a new nurse at my ped's office once. I said, "no, he isn't 12 months. He's 12.5." Then the other nurse gave her ds's whole back story and told her how he was right at 5 pounds at his 2 month check-up. It hurt my feelings, but she shut up really quickly about his size once she found out he was a preemie.

[intorainbowz]

Hi ....

I'm new and I'll post my whole story tomorrow. Can I just say AMEN to what has been said before.

My mom is the worst. I had to leave my little one in a carefully selected home day care for the very first time yesterday. She called me and asked how I did. I told her it was very hard. She said that since Sydney is so small, she won't remember this. I said sarcasticly that I have left her since she was born. She said so I'm used to this, implying this is a good thing. This from a woman who had 5 healthy pregnancies, 5 unmedicated labors, 5 babies who went home with her. She was also able to be a SAHM until my baby sister was 14. She knows nothing about this.

Leaving Sydney at the NICU was not a pleasure. It was hell. It was not a break, or a time to get sleep. It was the hardest thing I have ever done.

Yeah, I'm used to this. I hate this. I hate that I used all my leave on bed rest for 2 months. I hate that I was back at work part time 2 weeks after a c/s so I would have some time with my baby when she came home. I hate that I have been her main caregiver for a whole week at once. I have to work until DH graduates. We have to have health insurance.

On an infertility board we use the term WMBI Well Meaning But Ignorant. I think this applies to much of what we experience. This does not mean the comments don't hurt though.

I also want to point out that there are a lot of silly people who ask if my baby is on oxygen, when she has no tubes in her nose. They are seeing her apnea monitor. A monitor which is currently malfunctioning and I am waiting for home health. Then I can sleep.

[Amys1st]

Welcome Wendy! Cant wait to here about your baby! I can relate to the monitor thing too!

[mama2karli]

I still have trouble communicating with my (childless) best friend who asked me how DD was fed, and when I said a tube through her nose, said "gross!"

The comment probably was out of her brain as quickly as it was out of her mouth but I don't think I will ever forget it. In fact typing that makes me feel like crying because I think of all the pics we sent everyone of her with her NG tube in, and how beautiful she looked and, well.... you know. *snuffle*

[crissei]

Originally Posted by intorainbowz

Hi ....

I'm new and I'll post my whole story tomorrow. Can I just say AMEN to what has been said before.

My mom is the worst. I had to leave my little one in a carefully selected home day care for the very first time yesterday. She called me and asked how I did. I told her it was very hard. She said that since Sydney is so small, she won't remember this. I said sarcasticly that I have left her since she was born. She said so I'm used to this, implying this is a good thing. This from a woman who had 5 healthy pregnancies, 5 unmedicated labors, 5 babies who went home with her. She was also able to be a SAHM until my baby sister was 14. She knows nothing about this.

Leaving Sydney at the NICU was not a pleasure. It was hell. It was not a break, or a time to get sleep. It was the hardest thing I have ever done.

Yeah, I'm used to this. I hate this. I hate that I used all my leave on bed rest for 2 months. I hate that I was back at work part time 2 weeks after a c/s so I would have some time with my baby when she came home. I hate that I have been her main caregiver for a whole week at once. I have to work until DH graduates. We have to have health insurance.

On an infertility board we use the term WMBI Well Meaning But Ignorant. I think this applies to much of what we experience. This does not mean the comments don't hurt though.

I also want to point out that there are a lot of silly people who ask if my baby is on oxygen, when she has no tubes in her nose. They are seeing her apnea monitor. A monitor which is currently malfunctioning and I am waiting for home health. Then I can sleep.

Just wanted to say hi.
DS stats. are so similar to your DD. He was born by c-section at 2lbs. 13.8 oz. and in the hospital for 47 days.

[CallMeMommy]

Originally Posted by mama2karli

I still have trouble communicating with my (childless) best friend who asked me how DD was fed, and when I said a tube through her nose, said "gross!"

The comment probably was out of her brain as quickly as it was out of her mouth but I don't think I will ever forget it. In fact typing that makes me feel like crying because I think of all the pics we sent everyone of her with her NG tube in, and how beautiful she looked and, well.... you know. *snuffle*

[OGirlieMama]

Originally Posted by mama2karli

I think of all the pics we sent everyone of her with her NG tube in, and how beautiful she looked and, well.... you know. *snuffle*

I know how you feel. Even after my girls came home, Kate had a nasal cannula for 2 months. I would send pictures out and wonder if people could see past it to her incredibly cuteness, or if they just said "poor sick little baby" every time. No one ever said anything except my stupid next-door neighbor (a nice but tactless guy) who came over and saw them both, and pointed to Lilly (no cannula) and said "Well, this one looks healthy!" and didn't say anything about sweet Katie. :

[sehbub]

Originally Posted by OGirlieMama

I know how you feel. Even after my girls came home, Kate had a nasal cannula for 2 months. I would send pictures out and wonder if people could see past it to her incredibly cuteness, or if they just said "poor sick little baby" every time. No one ever said anything except my stupid next-door neighbor (a nice but tactless guy) who came over and saw them both, and pointed to Lilly (no cannula) and said "Well, this one looks healthy!" and didn't say anything about sweet Katie. :

Ugh. People are charming, aren't they? So sorry, mama.

[plantmama]

It's so great they got this sun forum up. I just noticed it!
I remember feeling sooo sensitive for the first few months. It is partly the hormones I think making the trauma so much worse. And the stress. And the heartbreaking reality of going home to sleep at night while your little baby is up in the nicu with some stranger who talks too loud or is just not nice enough....(most of our nurses were so great, but you know, you're just so sensitive...).
I nearly broke down when on two occasions there were moms nursing their full term babies in the pumping room. I couldn't believe my ears when people talked about how lucky I was to get sleep at night (yeah, except for waking up to pump, that's fun!). I don't even think dads of preemies can fully relate to the agony of having a preemie, because (at least for me) the mamas hormones are telling her all this stuff that she simply can't listen too. I have never experienced such real physical pain.
I would keep a lot to myself even among the other preemie moms, because there were some who had such tiny, sick preemies and they made me feel lucky.
Ds was 30 weeks early and has always been healthy with just typical preemie issues. We were in the nicu for 6 weeks.