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Preemie parents - got some ?'s 4U

Are you part of the NICU club? Do you have a child who is still struggling with the effects of being born too soon from preeclampsia? Share your concerns and stories here among parents who have been there.

Preemie parents - got some ?'s 4U

Postby jenn » Thu Apr 22, 2004 08:03 am

by jenn (2038 Posts), Thu Apr 22, 2004 08:03 am

[?] Is your child old enough to understand why they are special?
Do they ask or show interest in their past?

Over the past few days Jaidyn has gotten a hold of some picture books of her and I in the hospital. She pointed to a pic of me and responded "Poor mommy" and one of her "poor baby Jay-in at doctor" I was really taken back. I answered her questions and told her she was special to me. I don't want to upset her or anything... not sure how to handle any future moments. But she does have an appt. at a physiatrist on 5.5. Her ped. thinks it's in our best interest and made the appt. for us months back. Anyone else done that?


Another one:
[?] Does having a special baby make you a diff. person?

I realize without this website I'd have nobody to call a friend. I can't seem to keep any. I know I'm overprotective, but I don't think it's at a sick level. I take too much criticism from others just for being who I am. And that would be a mom whom has never left Jaidyn with a sitter -EVER!- and live for anti-bacterial gel, and avoid all fast food places with a play-place, and all other public places during the cold/flu seasons (she's already had RSV, & pneumonia this year alone). Jaidyn doesn't have friends either, only because it upsets her to be around other kids (besides close family) her sensory integration dysfunction is considered moderate. I really feel misunderstood because of this.


Jennie (24)
Shad DH (28)

Jaidyn 1.24.01 (30 wkr)
Severe PE/HELLP
2lb. 12oz.

Heavenly Angel:
Blaze
12.6.03
(miscarriage)

EDD- Thanksgiving! 11.25.04
(giving mommy gray hair already) Couldn't be happier!

http://www.babiesonline.com/babies/j/jaid/
jenn
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Re : Preemie parents - got some ?'s 4U

Postby deerhart » Thu Apr 22, 2004 10:30 am

by deerhart (3282 Posts), Thu Apr 22, 2004 10:30 am

Personally I think having kids makes you special all on its own. I know how hard it is to adjust to what you have versus what you thought you were getting when you got pregnant. My son has a language delay and is also delayed in socail skills. They at one point thought he was going to be eventually diagnossed with PDD/NOS, but he has made such great strides that they feel its still may not be appropriate.

It was always hard for us to deal with the LOOKS from other people who you just know want to ask what is wrong with this kid! To the point that we avoided as much as possible going out to many places (it doesn't help that crowds or large number of people can mak his behavior worse). Over the last year of therapy things have gotten better and we feel more comfertable going places with him.

Though, he still hasn't picked up on the idea that he is any different then any other kids which I think is good. He is just as accepting of the normal kids at his daycare as he is of the kids in his special ed preschool. He doesn't notice his speech problems and he doesn't notice their disabilities or delays either.

I hope that both my boys know they are special to me, not just becuase of what we went through to get them, but just because they are our children. I don't want Mason to think that he is any less important or special to us then Alex is becuase we had a harder time with Alex. Its just that each is special in their own way and for their own reasons, personalities, gifts, strengths, weakness, and faults. Alex is challenging in one way, Mason in another.

Remeber that you have to do what you feel is best for your child and at the rate you feel they can handle it. Plus, you need to also take care of yourself. That includes includes both mommy time and me time. Whether that me time is taken by leaving your child with daddy, with grandma, or while the child is napping, its just as important as being Mommy.

The other thing you might do is look for support groups for children with delays/disabilities in your area or through your school district. Many places do have them and if not, you can always look for a support group online.

Having a special baby only makes you different in the fact that your a mommy to that child. No two mommies are the same, no two mommies face the same situations, and no two mommies will react the same way. You are the mommy to the little girl you are given and need to do what you have to for her.

Erin

Moderator - First Time Moms, Parents of Preemies
Missouri State Coordinator
Mommy to Alex and Mason
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Re : Preemie parents - got some ?'s 4U

Postby hannahsmom » Thu Apr 22, 2004 10:52 am

by hannahsmom (1141 Posts), Thu Apr 22, 2004 10:52 am

Hi, Jennie! Hannah (she'll be 3 in August) also looks at her pictures from the NICU. She loves to look at them. She does not know she is different from any other children. She plays with the kids in her daycare like she is one of the gang. She is quite delayed in speech and has some hyperactivity problems. When she is old enough to understand, I will absolutely tell her how special she is. This is a kid who was not supposed to make it, but beat all the odds and is a bright, beautiful little girl. I don't care if she had two heads, I would be so proud of her. We always get comments about how small she is and people ask why she doesn't talk more, so I just let these people know exactly what she went through and how lucky were are that she doesn't have more challenges.
As far as not leaving your little girl with anyone...I would probably be the same way, except I was forced to go back to work while she was in the NICU and have worked ever since. She has stayed with sitters, grandparents, friends, daycare....it was tough at first but you do what ya gotta do. She is very sociable and her development improved the minute she got into the daycare with the other children. I know it's hard to leave her with anyone because of all you went through. But she may enjoy some time with other children. How about pre-school a couple of days a week? My sister is a SAHM to a 3 year old and new baby. She has never left them with a sitter either. Her husband was recently hospitalized with a serious illness and she wanted to be with him during testing. No one in our family lives near her and none of us could afford to take time off work and buy a plane ticket to come down and watch the kids. She almost had a nervous breakdown, because she could not be in both places at once. I had a serious talk about it with her and I told her all I had been through and how now I am almost glad I was forced into taking Hannah to daycare because othewise she would have been very sheltered. Anyway, she agreed to leave her kids with a friend of hers and did not regret it. Best of luck to you!

Suzanne
Mommy to Miss Hannah Rose
26.5 weeker born 8/24/01
severe pre-e & IUGR
1 pound, 1 ounce
12 inches
Miracles do happen!
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Re : Preemie parents - got some ?'s 4U

Postby jenn » Thu Apr 22, 2004 11:50 am

by jenn (2038 Posts), Thu Apr 22, 2004 11:50 am

Thanks for sharing your personal experiences.

I hope I wasn't misunderstood about treating Jaid diff. just because she’s had a rough go.
I agree just being a mom is a huge life-changing event. And yes all my kids are like snowflakes and all very diff. I have a 9 yr. old stepson with autism and a 6 yr. old stepson whom is an ideal kindergardener. Each one has their strengths and weakness'.

I don't avoid going out with Jaidyn... I could careless about the stares and questions I get when she asks for a bottle in the store. I take her everywhere with me.
And I'm looking forward to her starting pre-school in the fall. We have the perfect school picked out and they won't treat Jaidyn any diff. than the others. So soon she will be with other kids her age that she's not close with. It will be great to see her grow up before my eyes.
Jaidyn is Jaidyn. You do what works for you- right?
And we tell Jaidyn she's special to us... not special to the world. I just want to her to learn early what I took for granted... Life is very fragile and don't take it for granted. We came out of this live for a purpose. And I never taught Jaidyn to say "poor mommy or poor Jay-in" That was all her perception. I just hope I helped to understand what was going on in those pictures. I feel it's a big part of who she is.
So thanks, I now know that it isn't about being right or wrong... it's about what works for us. Being a mom didn't come with an instruction book [:)]


Jennie (24)
Shad DH (28)

Jaidyn 1.24.01 (30 wkr)
Severe PE/HELLP
2lb. 12oz.

Heavenly Angel:
Blaze
12.6.03
(miscarriage)

EDD- Thanksgiving! 11.25.04
(giving mommy gray hair already) Couldn't be happier!

http://www.babiesonline.com/babies/j/jaid/
jenn
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Posts: 2038
Joined: Tue Jun 17, 2003 01:31 pm

Re : Preemie parents - got some ?'s 4U

Postby hannahsmom » Thu Apr 22, 2004 06:17 pm

by hannahsmom (1141 Posts), Thu Apr 22, 2004 06:17 pm

Hi, Jennie! We are all part of a special club. I was terrified when Hannah started real daycare when she was a year old. She was way behind and I was afraid she would be treated differently. But they didn't treat her differently at all. In fact, they didn't baby her - instead they made her do what all the other kids did! We have applied to have her placed in an ESE pre-k class in our county school system when she turns 3 in the fall. She will get free speech therapy during the school day. Right now she is in an early intervention program that pays for her speech until she turns three. The speech therapist comes to the daycare twice a week. Our insurance won't pay for it. Anyway, you sound like a great mom to be so concerned. I have pasted in "The Special Mother," which is something I came across about a year ago. I cry every time I read it. But now I know that I was hand-picked to be a preemie mom and so were you.[:)]

"The Special Mother"

Some women become mothers by accident, some by choice, a few by social pressures and a couple by habit. This year thousands of mothers will give birth to a premature baby. Did you ever wonder how mothers of preemies are chosen?

Somehow, I visualize God hovering over Earth selecting His instruments for propagation with great care and deliberation. As He observes, He instructs His angels to make notes in a giant ledger.

"Armstrong, Beth, son. Patron saint, Matthew.
Forest, Marjorie, daughter. Patron saint, Cecelia.
Rutledge, Carrie, twins. Patron saint... give her Gerard. He's used to profanity."

Finally, He passes a name to an angel and smiles, "Give her a premature baby."
The angel is curious. "Why this one, God? She's so happy."

"Exactly," smiles God. "Could I give a premature baby a mother who does not know laughter? That would be cruel."

"But does she have patience?" asks the angel.
"I don't want her to have too much patience, or she will drown in a sea of self-pity and despair. Once the shock and resentment wear off, she'll handle it.
"I watched her today. She has that sense of self and independence that are so rare and so necessary in a mother. You see, the child I'm going to give her has his own world. She has to make it live in her world and that's not going to be easy."
"But, Lord, I don't think she even believes in you."
God smiles, "No matter, I can fix that. This one is perfect. She has just enough selfishness."
The angel gasps, "Selfishness? Is that a virtue?"
God nods. "If she can't separate herself from the child occasionally, she'll never survive. Yes, here is a woman whom I will bless with a child who comes in a less than perfect way. She doesn't realize it yet, but she is to be envied.
"She will never take for granted a spoken word. She will never consider a step ordinary. When her child says 'Mommy' for the first time, she will be witness to a miracle and know it. When she describes a tree or a sunset to her blind child, she will see it as few people ever see my creations.
"I will permit her to see clearly the things I see - ignorance, cruelty, prejudice - and allow her to rise above them. She will never be alone. I will be at her side every minute of every day of her life because she is doing my work as surely as she is here by my side."

"And what about her patron saint?" asks the angel, the pen poised in mid-air.

God smiles. "A mirror will suffice."

-Adapted from
Erma Bombeck
Motherhood The Second Oldest Profession


Suzanne
Mommy to Miss Hannah Rose
26.5 weeker born 8/24/01
severe pre-e & IUGR
1 pound, 1 ounce
12 inches
Miracles do happen!
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