Hints for a New Preemie Parent....

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.

Hints for a New Preemie Parent....

Postby angelical » Fri Jun 13, 2003 10:12 am

Attention all past preemie parents...

Since there is always going to be another preemie parent (or grandparent, etc) that comes to the forum seeking tips and advice for dealing with their little ones, let's start a thread of ADVICE.

I think that among us all is a VAST amount of information, ideas, tips, thoughts, that we figured out or WISHED that we'd figured out when our babies were in the NICU or home (but still small and sick).

So, let's try to start something here ... that way as new ones come on, we can direct them here, rather than trying to re-remember everything. (here at my job, they keep touting "knowledge management"...I guess it stuck!)

Sharel

Sharel & Kevin
Aaron - 28 weeker
Born 5/2/02 due to preeclampsia & HELLP
angelical
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Re : Hints for a New Preemie Parent....

Postby angelical » Fri Jun 13, 2003 10:14 am

Take pictures of your child with objects that will give you an idea later of SIZE. We used a matchbox car and a stuffed animal. I know others have used rings, etc.

You probably don't think you'll ever forget how small the child is, but over time the images do start to run together.

Sharel & Kevin
Aaron - 28 weeker
Born 5/2/02 due to preeclampsia & HELLP
angelical
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Posts: 330
Joined: Mon Feb 24, 2003 06:39 am

Re : Hints for a New Preemie Parent....

Postby angelical » Fri Jun 13, 2003 10:16 am

Use a sheet of paper or a small whiteboard to write down the date, the baby's age, and weight, etc. Then take a picture of the baby and the paper for special days like "1 week birthday" etc.

You might have a written record of the weights, etc., but it is cool to have pictures like that to match up the size, amount of medical equipment, etc with the special day.

Sharel & Kevin
Aaron - 28 weeker
Born 5/2/02 due to preeclampsia & HELLP
angelical
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Joined: Mon Feb 24, 2003 06:39 am

Re : Hints for a New Preemie Parent....

Postby angelical » Fri Jun 13, 2003 10:19 am

BE THERE in the NICU as much as possible (based on your health and other family or work responsibilities).

One day (sooner than you think), they will tell you to take that tiny baby home! and you have to be prepared. Especially if the baby will come home with any equipment (apnea monitor, oxygen, etc.)

Sharel & Kevin
Aaron - 28 weeker
Born 5/2/02 due to preeclampsia & HELLP
angelical
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Posts: 330
Joined: Mon Feb 24, 2003 06:39 am

Re : Hints for a New Preemie Parent....

Postby angelical » Fri Jun 13, 2003 10:20 am

Do Kangaroo Care. That is where you hold the baby up to your bare skin for a while. (Your body heat helps keep the baby warm.)

It is supposed to help with your milk, if you are nursing/pumping, and it definitely helps with bonding.

Also, it doesn't just have to be the mom. Daddies and grandparents can do it too.

Sharel & Kevin
Aaron - 28 weeker
Born 5/2/02 due to preeclampsia & HELLP
angelical
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Posts: 330
Joined: Mon Feb 24, 2003 06:39 am

Re : Hints for a New Preemie Parent....

Postby angelical » Fri Jun 13, 2003 10:21 am

Don't let the monitors in the NICU drive you crazy. Eventually, you will be able to tune them out.

And, don't worry, the nurses do hear them and know when they indicate a possible problem with a baby.

There are many false alarms.

Sharel & Kevin
Aaron - 28 weeker
Born 5/2/02 due to preeclampsia & HELLP
angelical
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Posts: 330
Joined: Mon Feb 24, 2003 06:39 am

Re : Hints for a New Preemie Parent....

Postby aimeejane » Fri Jun 13, 2003 11:45 am

If you have a very early preemie, look into the state-funded therapy programs. In Georgia, it's called Babies Can't Wait, although it's different in every state. Every state offers the service, because of federal legislation, specifically Part C of the Individuals with Disabilites Act (IDEA). Do a web search to find the agency in your state, or ask your pediatrician.

Don't make the same mistake I did: When I asked the pediatrician about possible developmental delays, he replied, "Oh, he was three months early, so he'll always be about three months behind, and that won't make a difference when he's older." I believed him, and this information was WRONG! If I had done my research, I would have gotten Nicky's development tested a lot earlier than 13 months...at that point, he was testing at the level of a 6.5-month-old - much worse than just 3 months behind! The waiting list was so long to get into evaluation and therapy that he didn't start until 17 months. Although he caught up completely by his third birthday, I know in my heart that we would have gotten much farther much faster if we'd started the process earlier...say around 9 months.

Also, don't be afraid of a diagnosis! I've found that many parents don't want to hear there's anything wrong with their child, especially developmentally. However, embracing the diagnosis means that you can work with it that much more effectively.

Aimee - 28
Dh - 29
Ds Nicky - 3/24/00 (28 wks - eclampsia)
EDD #2 - 8/3/03 (It's a BOY!)
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Re : Hints for a New Preemie Parent....

Postby aimeejane » Fri Jun 13, 2003 11:53 am

If you want a wonderful keepsake, consider getting a preemie doll. Mine was made by Sandy Eding (http://www.macatawa.org/~eding/dolls.html), and it's just wonderful.

There will be many people who never get to see how tiny your darling was when he/she was born, and this is the neatest way to really show them. I asked for mine for Mother's Day last year, and I just love it. It's also a wonderful reminder of how far you and your child have come! Every once in a while, I take my doll down, just to cuddle my 'baby' again.

(To see a picture of Nicky with his preemie doll, visit this page: http://www.macatawa.org/~eding/kidsndolls.html He's the black and white picture, about halfway down on the right.)

Aimee - 28
Dh - 29
Ds Nicky - 3/24/00 (28 wks - eclampsia)
EDD #2 - 8/3/03 (It's a BOY!)
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Re : Hints for a New Preemie Parent....

Postby deerhart » Fri Jun 13, 2003 12:17 am

take care of yourself

Get some sleep, eat right, and take some mommy time.

Even though you may feel guilty because you think you should be spending every waking (and non waking moment) at the hospital with your baby, its just as important to take some time for yourself. Whether it be a nice bath, a massage, or just some time out shopping.

My other advice.. dress your baby in their clothes as soon as they will let you. Mason only spent 4 days in the NICU but it made a HUGE amount of differnece to me seeing him in his clothes instead of in the hospital t-shirts. In a way he became MORE my baby even though I couldn't take him home.

Erin
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Re : Hints for a New Preemie Parent....

Postby care-o-line » Fri Jun 13, 2003 01:21 pm

I got a preemie doll for my daughter also. The site is http://www.weebundles.com/index.html
the doll is awsome! You tell her the height, weight, skin color, etc..... and she custom makes a doll according to the specifications.

Caroline - 26
dh - 25
dd Sylvia 8/21/02- 32weeks- 3lbs,5oz- pre-e
http://www.babiesonline.com/babies/s/sylviakim/
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