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

Postby sherry fisher » Fri Nov 19, 2004 10:48 am

Holding a preemie is often difficult and awkward for dads and siblings. I found that swaddling Alex in a few blankets helped my husband get a better 'grip' and helped my little brother be involved in holding him.

Also....CLOTHING.....BUILD A BEAR in the mall! HE HE. You will have to sew up the tail opening on the bottoms, but they fit and they are so adorable and afordable! I could not for the life of me find Anna a hat that fit her. Found it there! A cute little hibiscus pink and white bucket hat! Adorable!


Sherry Fisher (28)
DH: Bill (35)
Proud Mama to:
#1) Alex 1/1/94-PE
#2) Abbie 12/17/97-PIH
#3 Will 08/03/02-PP PE
#4) Anna 04/06/04 - PE
http://www.babiesonline.com/babies/b/babyfish3/
Baby Annna;
http://www.babiesonline.com/babies/b/babyfish4/

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

Postby patricks mommy » Fri Oct 01, 2004 05:30 am

My son Patrick spent 31 days in the NICU. He was pretty healthy, just a feed and grow, but it was still a very hard month. I had a hard time dealing with the guilt of not being there every waking minute, but I knew that I couldn't be. Emotions and logic are two very different things.

I went to the NICU every day, but I didn't stay all day. I normally went around 10 am and then took a lunch break and then went back in for an hour or two. Then my husband went in after work for an hour or two. We then went together on the weekends. It was nice to have separate time with our son and that way we knew there were more hours in the day that one of us was there.

One thing I found very helpful is to call the NICU to check on your baby. We would call in the evening and normally in the morning. Just a quick call to see how his night was and to let them know what time I would be there.

I also took over bath duties, feedings, took his temp., changed his diapers, etc. I would make sure the nurses knew that I wanted to do all of those things.

I don't know if I was suppose to do this or not, but his chart was kept next to his bed and I read through it every day to see what was going on.

The nurses all told us to go out for a date night, the night before we brought him home and I highly recommend it. It was a night to celebrate. We were so excited and nervous, it was very special.

I hope this helps. I know it is a tough time, but you do get through it.

Bethany (29)
Brian (30)
Patrick born 06/12/01 at 31 wks due to PE weighing 3lbs 4oz

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

Postby sandy » Wed Sep 01, 2004 12:16 am

In case it hasn't been mentioned here (I don't believe it has)...came across this link for NICU families on the March of Dimes website:

http://www.marchofdimes.com/prematurity/5128.asp

~Sandy/DD born via emergency C at 35 wks/1 day June '03 due to Severe PE/class III HELLP

CAUGHT THE EGG!! Estimated hatch date: 3/13/05; scheduled C at 39 weeks...or earlier if needed.

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

Postby wendy » Tue Jul 13, 2004 04:07 pm

I'm new here, but I'd like to offer advice too. My daughter, Audrey,has been home from the NICU for one month. She was born at 29 weeks and it was a tough time for us, even though she was pretty healthy.

My advice is to not bottle up your emotions. If you feel like crying, do it. If you don't let those tears out, you're likely to lash out in anger at someone you love. When you feel angry, just scream. I had to go to the garage more than once while my daughter was in the hospital just to let it out.

But most importantly, when you get good, positive news on your baby, focus on it. Tell everyone you know. There's just something about speaking the good things. Don't dwell so much on the negative reports.

I totally agree with others to do something special with your spouse. We got so behind on bills while Audrey was in the hospital, but we did splurge and have a very nice dinner date once in a while.

Keep everything you can from the NICU. I'm looking forward to the day I can show Audrey all the teeny-tiny items she used (pacifer, onesies, diapers, etc).

Definately keep a journal. I wrote every day even if it wasn't something major. I also kept a calender, and still do, showing major advances and her daily weight.

We love and adore our special preemie!!

Wendy (24)
Husband: John (24)
First Child
Audrey Grace born 4/10/04 at 29 weeks due to preeclampsia
In hospital for only 7 weeks
Had RDS, unclosed PDA after 3 weeks age, heart murmur, cyst on brain (but it's gone, thank God). Never had surgery.

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

Postby deerhart » Thu Jul 08, 2004 01:27 pm

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

marybees
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Joined: Tue Apr 27, 2004 03:49 am

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

Postby marybees » Mon Jul 05, 2004 10:53 pm

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.

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

Postby miss_doula » Sun Jun 27, 2004 10:41 pm

[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

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

Postby djismith » Sun Jun 20, 2004 06:25 pm

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

deerhart
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Joined: Thu Jan 30, 2003 08:54 am

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

Postby deerhart » Sat Jun 12, 2004 11:02 pm

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

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

Postby browncow » Fri Jun 11, 2004 11:05 am

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.


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