Sound like anyone you know? (Really Long explanation)

So I have two family members, my sister and my sister in law (my hubby's brother's wife) that act like what we have been through is a normal thing and everything is fine. My sister insisted today that I have not missed any bonding time with my daughter because of all this. She defended her opinion by telling me that I am wrong and even talked over me when I gave her an explanation (that no matter what the baby has been separated from the mother, therefore losing bonding time). She may have an adjusted age but that does not mean I will ever recover these 4 months! My sister also said that my daughter having stomach surgery wasn't that big of a deal. My sister is young and has no idea about babies and much less cannot even pick a decent man to date...On the other spectrum, my sister-in-law has two kids of her own and recently found out she is pregnant again. Whenever we talk about my experience in the Nicu, she quickly refers to her other friends that have recently had kids and talks about their misfortunes and says that its proof that mine will be fine. She thinks that my little one looks like a normal healthy baby and won't have any problems in the future...that once she comes home she will be a normal 4 month old-but smaller. I think her friends 6 pound baby that never stayed in the nicu and was only 4 weeks early should not be compared to my baby. These are only a few examples from both people. It is really frustrating because there are so many things that we go through with this experience and it continues after they go home. I don't ever expect someone who has not gone through this to truly understand...but how can they believe that this was a piece of cake...that its all peachy when they do come home? Does anyone else have a problem with some family or friends in this way?

By Mamato4
Posted July 18, 2008 at 7:14 am
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UGH! A friend and I were talking about how some ppl just dont get it! She has friends that act the same way about her 26wker who barely weighed a pound. I dont know if its just ppl lack the ability to comprehend things that make them say or do the stupid things they do. I would totally be frustrated in your situation. Having surgery is a BIG DEAL! Maybe Im just moody right now but sheesh you sister and SIL need a reality smack. hehe.
For myself I havent even told several of my friends that Im prego again because of their lack of response to my last preemie. It just hurt that they couldnt even respond to my emails or updates on how she was doing. It felt like the time I needed the most support they offered very little or none.

By alskwirut
Posted July 18, 2008 at 7:32 am
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Wow! This was like reading my very own experience through someone else's eyes! I went through the same thing with my sister in law (hub's bro's wife). She said just about the same things. When Jeff was diagnosed with CP I got all the comparison stories from her about how so and so did this and so and so did that and she even came out with "he doesn't look like he has anything wrong with him". Needless to say, I have not spoken to her since. No one will disrespect me, my husband, or my son like that.

I DO know what you are dealing with. People don't understand how special and strong preemie parents are. Just think, could your sis or SIL have come through as strong as you have if they had a preemie? Nope. Just think that your little girl has the best mom and dad she could have ever wished for. *hugs*

By Yolonda
Posted July 18, 2008 at 11:08 am
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My daughter is a former 23 weeker who is now 3 years old. In a group of her peers, you would never guess she was born 17 weeks premature weighing 1# 5oz. However, that is where it ends. My daughter has lung disease, pulmonary hypertension, does not like to eat, thank God for Pediasure, sat up late, walked late, run late, and still does not jump. She still delayed in some areas, but bridging the gap everyday. I have long since stop talking to my family and friends about my daughter on the premature level because it always end up in total frustration. If I tried to praise my daughter for something she accomplished, I was met with well mine did that at this age etc. If I tried to confide, vent, or just express my concerns about her, either they dont know what to say, say nothing, or say the WRONG thing.

3 years into this, I only speak with other preemie parents about the preeemie issues. Only other POPs (parents of preemies) understand. And although any experience in the NICU is a scarey one. A child being born 4 weeks early does not compare to a child being born 17 weeks premature. The journey and course of treatment is much different.

Just know that people will really never understand unless they have been there and in that respect, I dont want them to because I wouldnt wish a NICU journey on any child or their parents.

Take care,
Yolonda

By katek
Posted July 18, 2008 at 1:16 pm
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* I have had friends compare my son's NICU experience (25-weeker, born 1 lb 3.65 ozs) to when their son (FT baby) had an asthma attack and had to get some tests at the hospital (didn't stay overnight).

* When explaining RSV and having to stay indoors and away from people, another friend with FT babies said, "Yes, my kids both got colds this winter. I should have kept them in too."

* When my son first came home, I mentioned that he had reflux to yet another friend who said, "Oh well. All babies spit up."

* A medical assistant at the pulmonologist's office said to me, "At least you didn't have to carry around all of that weight during the last trimester."

* And my favorite...a friend found out that she was pregnant and called me. She said, "Well I just need to make it to 25-weeks like your baby."

My husband and I have come to the same conclusion as Yolonda when she says:
"Just know that people will really never understand unless they have been there and in that respect, I don't want them to because I wouldn't wish a NICU journey on any child or their parents."

In a lot of ways, I am a better, more compassionate person for having been through this experience. I worry about my son everyday, but I do hold out hope that things will be OK. That said, if I had a billion dollars and was given the opportunity to exchange it for my son having a "normal" birth, I would do it in a heart beat.

== Kate

By Mama_Cyndi
Posted July 18, 2008 at 8:34 pm
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I learned really quickly, probably within the first week of my son's birth, that everyone I know, except for my best friend Lisa and my parents, husband and son, are incapable of processing the sheer magnitude of what having a micro preemie encompasses. People, I think, for the most part try to say what they hope is the right thing, but most people have never needed to know what to say, in this situation, so they end up seeming incredibly insensitive. I found it easy to get angry at people for making remarks like "well at least you didn't get far enough in the pregnancy to get new stretch marks" ( O.o <-- raised eyebrow). When I would sit and think rationally about it (usually after throwing a silent mental fit), I knew that my friends, etc didn't WANT to hurt my feelings..they just didn't get the "how to talk to a micro preemie parent" memo. They just couldn't help sounding insensitive and I needed to be mad at someone anyway since I had no one to really "blame" for the whole situation. It would give me a few minutes to vent..work out some emotions and then remind myself that we were all dealing with something beautiful/horribly timed/terrifying/unknown. I also didn't know that everyone I knew would have a "preemie" story (family excluded). My father, bless his heart.. said the perfect thing about my son.. "I don't know what to think or say about any of it, but I love him".

By jodi2
Posted July 18, 2008 at 10:59 pm
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There are truly all kinds of people in this world. My sister in law delivered a healthy 9# baby seven weeks before I delivered my 26 week 1lb 1oz son. It has been a constant comparison of who is doing what and when. My son has obviously been behind on numerous things. But what makes me most proud of him is his outgoing personality, easy to get along with anyone, and his tough I can keep up with anyone attitude. He is only on the 5th percentile for height for a three year old- but it does not stop him from anything.

After 3 1/2 months of being in the hospital and finally being able to bring him home did we learn how inconsiderate people can be. Some of them family and friends. After trying to explain to everyone the struggles of being a preemie parent, did I try to finally add humor to it. If they were truly stupid enough not to get it, that is their loss. I would try to give an answer that would make them realize how dumb they were being.

We have all had to explain why we don't take our little ones in public- fear of RSV, colds, flu etc. I would never want anyone to experience anything like that. But, when a cousin of mine just didn't get the whole RSV thing and why I didn't bring my son around at Christmas, and her daughter caught RSV a week later, I thought to myself now maybe she will understand. She complained about a few days in the hospital. Trying being in there for months at a time.

No, I didn't have to feel the uncomfortable kicks at the end of the third trimester. I didn't get to feel any kicks at all. No, I didn't have to feel the uncomfortable contractions, I had to have an emergency csection. And what should be most humiliating is where did the 40 lbs that I gained while I was pregnanct come from when I only had a 1lb 1oz baby?!

What makes me smile the most is the first time we took him to a mall. My husband was pushing the stroller and some old ladies came and asked how old the baby was. My son was about 6 months old , three months corrected. He weighed about 6lbs. When my husband told him how old he was, they looked at me and asked how old he really was. I told him the same, and then of course had to explain the premature thing. They didn't believe a word he said because he was a man!

I know not all people are that ignorant. I have met a few that had to experience the NICU for a few days. They said they can't imagine what it's like to be a mom of a preemie who has to go what we go through.

I believe it really does take someone special to be the parent of a preemie. I know what an impact in made on my life. There are reasons why those people who ask stupid questions and make stupid comments are not a preemie parent!

Jodi

By t-chan
Posted July 19, 2008 at 4:19 am
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Its hard but try not to be too offended by people who don't understand. Before you had a preemie how much did you know about them? I myself was shocked to find out they usually stayed in the hospital until their due date. I honestly thought it was a couple weeks and he'd be home, when they told me 15-16 weeks i was amazed.
And yeah I've had my share of well-meaning but ignorant comments as well. My favorite being when I was telling my friend that when I last took my son to the hospital to see how is cold was healing all these people (mainly sick old people) were fascinated to see such a small baby out and about and kept wanting to touch him, which of course no parent (let alone a preemie parent) would want tons of sick people touching a baby, especially one that had just gotten over a cold. And she said to me 'you're really turning into one of those parents that everybody hates' ... yes because i don't want my child getting an illness that could be potenitally life threatening.
Then there's all the old ladies who ask 'is it alright to bring him to the hospital???' well duh, how else is he going to get a check-up
My old boss called me up thinking to get me to come back to work after he was born since I wouldn't have a baby to take care of for a while 'you can't be planning to go to the hospital EVERY day???' - I have to say that was the most hurtful as he was just born and I didn't even know if he would live
Even the city welfare worker who knew he was the preemie (yup in Japan city welfare workers come to check up on you and the baby) made the silly comment about all babies spitting up when I told her to be careful holding him because he has reflux and had just eaten...
But I just try to remember that I was just as ignorant before all this and you cant make people understand. So just try to take it in stride

By mandi_f
Posted July 19, 2008 at 4:31 am
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I soooooo hear each of you!!! Everyone wants to be supportive and they say things out of the best intentions but at the time, it just blows me away.

A few of my faves...
Our daughter is a 25wks now 18month...

When she was born C/S: "atleast her head was so small it didnt get squished in the deliver"

Our daughter is a surviving twin. Of our daughter who passed away: "atleast you wont have two special needs babies to take care of, sometimes things work out for the best" WHAT??? We had soooo many similar responses about how 'lucky' we were to be 'spared', how it was 'natures/gods way'...

Of our daughters severe GERD: 'my [healthy F/T baby] used to spit up on my shoulder every morning' (if ONLY they knew what they were comparing their experience with...think projectile vomiting all down your bra, every surface and peice of furniture in your home sprayed with vomit, having to wipe vomit off of your dog who got caught in the line of fire!)

The toppers for me are always the endless feeding advice I receive from parents with healthy babies who eat:
'all babies will eat if their hungry enough...' NOT OURS! [Our local physician - there are no ped's in our rural area - actually said 'no baby will starve itself'... I responded 'well actually...' hello?? She has a G-tube for a reason!

'you just have to do x,y and z and she'll start eating for sure' oh thank you, after 18 months of endless effort and a feeding team of professionals, I dont know how we could have missed that! Okay, a little snarky but c'mon already!

Again, I know that people really try to say the right things and to be as supportive and comforting as possible but its true, you really cant relate to people on a meaningful level with this stuff if you havent endured an ill child or traumatic birthing experience. We actually had two sets of friend who had twins w/in 2 years of our pregnancy and both had complications but bc/ their children were born and they appeared 'normal', I never gave it much thought as something really traumatic! Seven months in an NICU on the other side of the country quickly enlightened my thinking. Never again will I utter the words 'everything happens for a reason'

By lillysmomma
Posted July 19, 2008 at 5:21 am
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It amazed me how people, especially family, would make the dumbest comments.
I explained the whole fall and winter why our baby was getting RSV shots and limited in where we would take her. I was always told I was too protective. DD is now 17 months old and I still sanitize any restaurant service she may touch and she sits in a seat cover from home. My grandma is the only one who will go out to dinner w/ us because we are "over the top".

Reflux was just "something we had to deal with". Are you serious, the child was miserable! She puked all the time and choked on her vomit. I had to sleep in a chair for months to get her to sleep and keep her from choking.

"RSV shots, why would you make a baby get a shot every month, that's mean". Mean? OK, lets just let her get sick and go back into the hospital no big deal, right? What's another 3 months!

I am "cruel" according to my own mother because I am making my baby wear glasses.

I took her to too many Dr's and she had too may appt's.

Her IVH and PVL-- I "need to quit complaining"

The worst wasn't a comment, it was the over all way I was treated by my own parents. They would never stay more than an hour because they didn't want to pay $2 to park. My mom who doesn't even work NEVER even offered to come and sit with me or go to lunch the whole NICU stay. My 76 yr old grandma, with 2 bad knees and a bad back managed though, how messed up is that? And the look of horror on their faces that their grandchild may be disabled or mentally handicapped was beyond words. It was only when she was a year old and pretty much "normal" that my dad started telling everyone how she was my mom's world. HA HA HA, She hasn't babysat since March and even then my 14 yr old was there to make sure things went smoothly.

I feel right where you are coming from! I didn't expect everyone to know the right thing to say or do but a little understanding would have made a bad situation a little more tolerable.

By Nitsrini
Posted July 19, 2008 at 6:26 am
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My God ... Its exactly like mine.

People compare my 27 weeker less than a pound to my husband's niece a FT 3.5 kg . I hate such discussions.
When my lil one came home I used to nurse her and she used to sleep a lot and my MIL is like this is very usual and that all babies do this . When I talk about her NICU blood transfusions and IV lines and Vent she talks about the niece's vaccination and how she cried for that.

She also keeps saying this nothing at all. When we do ROP she speaks about her own eye check up. My daughter never used to put her foot down during sleep and my FIL used to look at her like a creature.
Sometimes they dont realise she is a preemie and tells us to do unusual things. They were angry cos we never invited any one home for baby home coming.

My brother always used to say that there are worse complications than this and what ever I have gone through is nothing . Sometimes that put us off. My lil one never slept in the night initially and every one used to say their FTs were also like this.

This is something that has made me cry a lot. Why do people not even try to understand what we have been through. I used to get frustrated. But later on I stopped discussing with people who dont even make an attempt to understand. There by I was much relieved.

Good God I found this place. I am very thankful to all the moms who listen and reply and help.

By Nitsrini
Posted July 19, 2008 at 6:41 am
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Just to add one more thing..

Now my lil one is 10 months old (actual) 7 months adjusted.. Every one wants to meet us . They are like wow she looks very pretty , trying to crawl .. Amazing .. ( even now thy dont like NICU stuff)

These are the same people who refused to talk to us over phone or email us when we were in a crisis.

Just ignore these people and enjoy with your lil one .

By MomofTeddyandEmma
Posted July 19, 2008 at 10:30 am
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Thank you for posting this. It is just what I needed to read. We just found out that my son is going to have to stay in the hospital for at least two more months (he reached his due date earlier this week). But because of severe lung disease that is damaging his heart he needs to stay. It is amazing how unsupportive my family has become. I have an 18 month old (15 month adjusted) and was told how inconvient it is for my sister to watch Emma for a couple hours on Sunday so my husband and I can both go see Teddy. My sister said that she needs to relax before she goes to bed early????? After all she wants to go into work early so she can work out in the gym before work. (She has three children 5, 9, and 13).

As terrible as it is to say - I'm glad there are others out there who understand.

By dragonqueen84
Posted July 19, 2008 at 11:43 am
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wow!! yea there is a completely BIG difference between a child being "born early" and a preemie!! preterm and preemie are different things...yes they sound similar etc. but our PREEMIES go through hell then take their steps to recovery!! (excuse the langauge)

By triplel
Posted July 19, 2008 at 12:12 pm
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yes yes yes, there is a HUGE difference between your little preemie and their 100% healthy full-termer. I think it's hard for family to really know how to relate or compare. I think instinctively we compare kids development as they grow up, a preemie throws the regular "comparing rules" out the window.

My 26 weeker was born 2 weeks after and 5 weeks before two of her full-term cousins. It's been a struggle handling the "age gap" and the huge development gap that takes place. They are 5 1/2 now, and I am finally seeing them play together as though there isn't any problem... It's a tough thing. I agree with your frustration.

The best thing you can do it stand up for yourself and your child and explain lovingly that things ARE different and they aren't the same. Good luck!!!

By amydiane
Posted July 19, 2008 at 12:32 pm
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Mine isn't as bad as some of the things other people have had to deal with, but my MIL didn't really seem to "get it" either. Pretty much after the first couple days, her mantra was, "He's okay, he's just small." (25 weeker, 1 lb 9 oz.) She never said or meant it in a mean way, but it still was hard to hear when we had no idea if he was going to be okay. Maybe it was something she needed to tell herself to cope, I don't know. Also, when I passed a blood clot a few days after delivery that was twice the size of my fist (after several days of extremely heavy bleeding and cramping), she told my husband that that was normal, and after she delivered her kids, "couches and baseball bats were falling out" of her. At the ER, my OB disagreed and wanted to admit me but I refused since my son was at another hospital an hour away.

I also had a woman at the grocery store tell me that she wished her kids had been preemies because her kids had all gone right into 3-6 month clothes when they were born. I told her politely that I really wouldn't recommend it, and she said, "But the preemie clothes are so cute!" Yeah, you know what's not cute? Spending months in the NICU, seeing your baby stop breathing and turn blue and have to be resuscitated, sepsis, IVs, PICC lines, I could go on and on. And guess what, he couldn't even wear clothes until he was almost 2 months old, and then they were huge on him. I really don't know how I managed to not go off on this stupid woman. I know that I was ignorant of preemie things before I had one, but I would never have said something like that. And she knew how early and small my son was because she had overheard me talking to someone else and butted in.

By HannahsMama
Posted July 19, 2008 at 2:49 pm
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My 40.5 weeker is not a preemie. I don't ever say she is. She was an IUGR baby, so she'd lost weight in utero and she was a traumatic birth which put her in the NICU for 2 weeks. Two weeks is a blink of an eye compared to her roomies who were celebrating being alive for 3 months, or reaching their 4-pound marks.

When I saw the NICU micros and other 3-pounders that Hannah roomed with, I knew we had it easy. I knew we were very, VERY fortunate to be looking at a stay of days and not months.

The thing is, Hannah's birth and last few weeks in utero did a bunch of damage and she's had a number of issues that her same-age peers aren't experiencing. She started walking at 25 months, and has a speech disorder that prevents her from articulating anything beyond single syllables within a 10-12 letter range.

In terms of long-term issues arising from birth, she is more like a preemie baby than a regular no-complications baby. And so we float between the two lands, grateful for her good health and infrequent doctor's visits, and working our butts off on the developmental issues.

If I didn't have this Web site to turn to, I'd be a wreck. You moms are heros in my book, almost as heroic as your little ones who work their tiny tushies off to make it in this world.

Now I have one more thing to be grateful for: I am not subjected to the ignorant comments of moms who refer to their 36-weekers as "preemie" and who say that "at least you can sleep at night while someone else takes care of your baby".

Two weeks in the NICU is far too long, let alone 2 months... Moms, these other women who open their mouths to reveal their amazing stupidity don't even deserve a response by you, let alone an emotional reaction. Let them be invisible to you when they talk like that.

And that "preemie clothes are cute" comment... OMY GOD! I ran a store that sold very cute micro (1-3 lb) gowns. They were too small to fit my daughter's DOLLS. Sure, they're cute... until you stick a baby in them and shove 20 tubes through the gaps. I can't even imagine... I'm just going to start ranting now, when all I'm trying to say is...

I'm NOT a preemie mom. And these idiots who are all making their comments about preemies sound like absolute fools... I pray to god I am not one of those idiots, I pray I am not trespassing on this sacred ground by daring to be part of this group even though my daughter was post-term...

By RevazMom
Posted July 19, 2008 at 3:52 pm
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here are a few of my own things that people have said to really annoy the heck out of me!

1. comparing reva's horrible repeated eye exams (the the speculum and wooden stick) to getting their eyes checked and needing contacts....how it's so traumatizing to put contacts in their eyes!!

2. comparing reva going under general anesthesia 3 times in her short time here to being sedated for ear tubes!!

3. comparing her several times a day blood draws, iv's and heal sticks to getting vaccines!

4. the comment "oh, my baby doesn't eat either." about their fat little kid. are you f-ing serious?? does your kid have a g tube??

5. of course the old comment "all baby's spit up." i still hear this even when they know she had multiple gi bleeds, has a g tube and vomits across the room (literally). have you seen our once spotless carpet?

6. oh you're back in the hospital...well at least it's the same one. it must feel like home.

7. the continued comment of "please stop putting her through more procedures". yes, i like having reva cut open!

8. comparing her nicu stay and multiple hospitalizations to an ER visit for hydration from the flu.

9. 33 weeks is not really premature. so god made pregnancy 40 weeks just for fun?? i know she's not a micropreemie and most 33 weekers do well, but mine has spent as much time in the hospital over the past 16 months as she has at home.

10. well she looks normal so she can't be as sick as you say.

11. be careful not to spoil her. you can't pick her up everytime she cries. babies are smart, they try to manipulate you.

12. refering to reva not being able to sleep because she throws up so much and has pain. "just give her some benedryl so she sleeps it off"

13. you should just accept this and stop taking her to so many doctors.

14. oh i love this one... you must get so bored in the hospital!
yes, i'm bored out of my mind!! are you kidding??

15. well at least you don't have to take care of her when you're in the hospital. assuming the nurses take care of her. reva screams bloody murder any time a doctor or a nurse walks into the room.

16. people acting like it's no big deal that we're in the hospital so much. like it's a natural process for us and it's easy now.
like when people invite us to do something and we tell them we're in the hospital, they don't ask anything about why or how is reva. they just say ok, well next time then. if you're free to hang out, why can't you just come visit us?? always there for the good times, but not there for the bad. it annoys the s*** out of me. but then there is the question...how do you keep your friends when they keep disappointing you? even though you should not have expectations, how can you not when you consider them a friend?

seriously, ladies...how do you manage to keep friends? i seem to be losing all of mine.

By internetjunkietiff
Posted July 19, 2008 at 4:30 pm
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MY in-laws don't understand at all. My sister in law had her baby "early". Based off her period she was 38 weeks, but the baby was really small and had problems eating, and because his fingers were fused together, they are saying that he was only 35 and 1/2 weeks. BUT, she was telling me all along that the ultrasounds were measuring him BIG. LOL. Whatever. Since he's preemie and he's fine, then my 34 weeker who is 4 weeks old now, who was 6 lbs 8 oz at birth, and 18.5 inches long, she'll be fine, she doesn't need to be in the NICU. I actually got in a fight with my sister in law. She was like, she'll learn to eat. Mine did. It just took a couple days. Oh, she knows how to eat. She eats breastmilk just fine. The stupid nurses kept feeding her formula and she didn't like it. SO she threw it up! If they put it down her tube, it stayed down. It was a preference for her.
I got in a fight with my sister in law about the time they were gonna visit. She said she was coming at a specific time. I told her she needed to be there 30 minutes earlier, or wait till 2 and 1/2 hours later. I did her care every 3 hours, and I was breastfeeding. I couldn't delay her feeding! That's not fair to her. Then the nurse would feed her formula. She was eating more than I could produce. She didn't understand why they could only come at certain times. Well, it was like that with my 29 weeker to, DUH! I wanted to slap her upside the head! She also thinks that because I had c-sections that I never went into labor. I won't even go there. I had PPROM with both my 29 and 34 weeker and my 36 weeker I pushed for 3 hours before my c-section! But yeah......She actually says so much stuff that really makes me mad. I have to just not say anything about her stupidity or it somehow makes me the bitch. LOL. Oh well.....

I had a 29 weeker, she was 2 lbs 15 oz. My mother in law kept telling me how small her 6 pound kids were.

By cris
Posted July 20, 2008 at 2:32 pm
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same with me when i told my freind that my daughter was hospaised twice after coming home he said many babies get hsopitalised its not a big thing .

I think this seriously helps!remember
1)ignore ,ignore what others say.they have not been through what you have been.
2)if they say anything dont discuss or argue or disturb ur relations .its of no use.just smile and change the topic.i do that when people say such things.
3) and do not share ur concern or feelings with every one.share only with people who can uderstand u.ur mom ur dad or some one really close.
4)be cheerful i know its hard but that really helps.u r already having lot of stress with the baby do not stress ur self with the silly talk of other people .

bye ..

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