Hints for a New Preemie Parent....

[angelical]

I just wanted to bump this back up to the top.

Preemie veterans.... be sure to post any ideas that you have for new parents!

Sharel

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Sharel & Kevin
Aaron - 28 weeker
Born 5/2/02 due to preeclampsia & HELLP

Our miracle boy is doing great!!

[amanda snow]

I felt a sort of detatchment from my twins, Maddie and Jacob...To help me get through this I discovered scrapbooking. You can write a journal as well. It helped me so much and made me realise what they went through. It also made me realise that every moment is precious. Believe it or not you actually look back at those first few months eventually with fondness. You should feel so proud of what you and your babies or baby achieve!

[angelical]

I just reviewed our forum, looking for some specific threads that new parents might find useful. Here's some that really seemed useful. (Feel free to add links to others!)

Specific Questions Preemie Parents have:

• Weight charts and adjusting for prematurity: http://www.preeclampsia.org/forum/viewtopic.php?t=286


• RSV and Synagis: http://www.preeclampsia.org/forum/viewtopic.php?t=1020


• Breastfeeding/Pumping: http://www.preeclampsia.org/forum/viewtopic.php?t=1293


• Early Intervention services: http://www.preeclampsia.org/forum/viewtopic.php?t=2327 & http://www.preeclampsia.org/forum/viewtopic.php?t=3630

There are also a couple threads that have cute lists, stories, etc. that preemie parents are all relate to. You can find them here:

• You know you're the parent of a preemie when... http://www.preeclampsia.org/forum/viewtopic.php?t=2550


• All Things are Relative: http://www.preeclampsia.org/forum/viewtopic.php?t=1774


• Welcome to Holland: http://www.preeclampsia.org/forum/viewtopic.php?t=2570

Good luck to all of you new parents. I hope that we veterans can provide you with the information and support that you need. This is a scary, wonderful, stressful, and blessed time of your lives. I'm happy to be able to share it with you.

Sharel



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Sharel O'Connell
Local coordinator for Pittsburgh area
'Parents of Preemies' co-moderator
Survivor of Preeclampsia, HELLP Syndome, & preemie parenting
Future adoptive mom

Aaron (28 weeker, 5/2/02) -- my tiny guy is TWO!
Kevin - DH

[iansmom]

I just thought of a couple of tips while reading another thread. First, babies born under 1000 grams are eligible for social security benefits. Jump on that immediately. It is not much at all, but is not retroactive, either. As far as I remember, it is a flat $30 a month while hospitalized, then it is income dependent. Next, if your baby is on expensive supplements, (human milk fortifier or formula, etc.) ask your pediatrician to ask the company rep for freebies. We got several $100 boxes of HMF. WIC will pay for formula and HMF as well.

Ian 12/26/01 - 26 weeks P/E & HELLP
#2 EDD July 15, 2004

[browncow]

Connor weighed 2 lbs., 7 oz. at birth, dropped down to 1 lb., 7 oz., and weighed 3 lbs., 5 oz. when I brought her home a month later.

I was advised by some of the NICU staff to apply for SSI but she was denied; low birthweight, prematurity, and major surgery on the first day of her life didn't constitute a disability.

We were, however, fortunate enough to participate in a formula program specifically for preemies through USF pediatrics in Tampa. In exchange for five months of free formula, free doctor visits, and Babies R Us gift certificates, I journaled Connor's feeding times, amounts, reactions to the formula, and graded her poop (by color, weight, consistency).

The formula was ready-made and supplied by the makers of Neo-Sure.

I advise all preemie parents to check with local med schools, children's medical services, and pediatricians about the possibility of such a program in your area.

On the clothing and diaper front...we couldn't find preemie diapers small enough to fit her so the hospital supplied them (NOT for free) for two months. Regular preemie diapers didn't properly fit until she was nearly six months old.

We resorted to doll clothing from Babies R Us and I bought her a puppy sweater (designed for a chihuahua or small Pekingese type dog) at WalMart so she'd have something warm!

Have any of you experienced positional plagiocephaly?

When Connor was almost seven months old, the pediatrician said the flattened spot on the right side of her head was possibly caused by her skull fusing too quickly. He scheduled cat scans, bone windows, and meetings with the craniofacial team at Tampa General Hospital.

I was terrified, the thought of her undergoing yet another major operation then being forced to wear a helmet for two years was daunting.

Bone scans showed that her skull was fine, the flatness was positional plagiocephaly. Simply put: due to prematurity, Connor wasn't quite strong enough to lift, rotate, and move her head as other six and seven month old babies (full term) did, thus she favored one side of her head. The flatness filled out as she grew, gained mobility, and I continued strengthening exercises with her.

The bone windows procedure was amazing, it's a process similar to the 4-D sonogram technology. Her head was scanned and her brain appeared on a computer monitor so lifelike that it seemed as though I could cup it in my hands. I could distinctly see it pulse with her breathing and see veins expand per blood flow. Seeing that part of my child so up close and personal was mesmerizing.

I too keep journals for Connor, I've slacked off from writing in it every day (she's 2 1/2 now, kinda hard to keep up) but I record daily events in our life, the nation, and the world. I keep scrapbooks and picture books so she'll never have to wonder who, what, when, were!

Also, I buy cards for her on every birthday and holiday, write special messages inside and enclose a photo from that period of time. The cards are sealed and will remain so until she's 18 years old and wants to open them on her own.

[deerhart]

Brown

Actually the thought Alex's skull was fused together at birth. He had to have xrays and scans done to determine if they truely were and we were explained that if it was he would have to have surgery done fairly quickly to seperate them to allow. Luckily, the issue was that because he had gotten stuck on my pelvis during pushing it had only overlapped the bones and it corrected itself as his head grew.
Both my boys had mishapen heads until they were about 6 months old. Neither of them like tummy time and preferred to lay on their backs. This led to flat spots on both the back and on one side. But they filled out once the boys started rolling over on their own.

It is also not just a preemie issue. I have met several children who have had this problem. Some have just had to wear the helmets, while others had both surgery and the helmets.
Erin

Moderator - Parents of Preemies
Missouri State Coordinator
Mommy to Alex (4)and Mason (1 1/2)
Law Student - 1 year done, 2 to go

[djismith]

Sleep whenever you can, before your little one comes home from the NICU. When they are home sleep/rest whenever they do.

diana (23)
jay (25)dh
Isis Sahara(dd)
08/29/02 born @ 31 weeks due to severe PE
2lbs, 8oz, 15.5 in.-
12/31/02 due to SIDS

[miss_doula]

[quote]Originally posted by AimeeJane

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!)

[/quote i realy loved his picture..thankyou for sharing that

[marybees]

WHATEVER NIPPLE YOU PLAN TO USE AT HOME BRING TO THE HOSPITAL AND START THE BABY USING BEFOR DISCHARGE.IT CAN BE DIFFICULT TO SWITCH OFF THE HOSPITAL NIPPLE.

[deerhart]

one thing I learned yesterday

If you have to bring your baby home on monitors, you should contact your local electric company (if they aren't battery powered) and notify them a member of your house relies on electrical medical equipment.
Thus in the case of a power outage (like we had here 40 hours with no lights isn't fun) they may prioritize you to try to get your electricty back as fast as possible.

Also on developmental diagnosis, while you shouldn't be afraid of them, you also don't have to accept one you feel does not fit your child either.
Erin

Moderator - Parents of Preemies
Missouri State Coordinator
Mommy to Alex (4)and Mason (1 1/2)
Law Student - 1 year done, 2 to go