Hints for a New Preemie Parent....

[igloochic]

I have a NICU nursing student (her last year is 2006) who comes in a few times a week to allow me four hours of sleep in a row. Ask your NICU nurses if they know anyone trying to earn a few bucks. For a very small cost (I pay $10 per hour) you can have the best qualified babysitter around and get some real sleep, or a break when you need it.

I have NO WORRIES when I am away from my DS to sleep or even to go out when I have to for business reasons. I know that while he's a challenge for me, he's easy compared to some of the other NICU babies she deals with so I feel complete trust in her ability to deal with anything that comes up (which is normally his food) [xx(]

[hoya]

preemie.com had some good preemie clothes for the early days.

I agree with a lot of the above. For example, we called the nurse every night before going to bed and first thing in the morning to check on DD and, if we missed the nightly "weigh-in" get her exact weight, which I recorded in a daily journal. I also agree with 2 visits a day, instead of one full-day visit.

If you're planning on breastfeeding / bottle feeding breastmilk, I highly recommend renting a hospital-grade pump from a local pharmacy while your baby is in the NICU. The NICU where my daughter spent 5 weeks had a few lactation rooms with pumps, which was great, but the hospital-grade pump was invaluable for home pumping, which I did every 2-3 hours around the clock, even setting my alarm to get up in the night.

Don't be afraid to ask for supplies from the hospital.... our NICU provided (if asked) breastmilk storage containers, and gave us upon discharge a whole bunch of diapers, a thermometer, a few burp cloths, a few bottle nipples, a nose suctioner, etc. It was a nice start.

If your hospital offers it, I recommend taking an infant CPR class before your baby is discharged.

Oh, also, I recommend making your baby's isolette as personalized as possible. We taped a special prayer card to the side of her isolette, which we recited to her every night before we left. We also had a couple of pictures for her to see, and I sang to her softly everyday. Mind you, I flipped out when they switched her from an isolette to an open bassinet on the overnight shift and didn't keep the prayer card (after many tears, the nurse was able to track it down for me in the sub-basement).

In your journal, keep a record of some of your favorite nurses' names and your baby's doctors. It's so easy to forget later on, but when they have the NICU reunions, you'll want to remember.

It's a scary experience, but boy it goes by quickly. Reading the above posts has brought back a wave of emotions!

[browncow]

This website was a lifesaver in the months following my daughter's birth.

My parents are deceased, friends and coworkers quit coming around because they didn't know what to say or do, and my now ex-husband sought solace in every bottle of Vodka in the Tampa Bay area. I was alone and lonely and didn't (and don't) want pity, I just wanted someone to understand, acknowledge what I was going through.

And I found all that (and more) on this website.

The stories of those who've walked in my shoes proved that the trials and tribulations of preemiedom weren't insurmountable. Often I concluded my reading with, "hey, I've had that problem/been there, done that; someone else finally gets it!"

Share this website with your family, friends, and coworkers so they may gain a better understanding of preemiedom/what parents go through/how to just be of comfort/compassion.

[jjohnston]

Take your pain meds if you need them! I tried to get off the pain meds too soon, thinking it would help the baby stay awake better, but my bp spiked from the pain... Then i had to worry about the effects of the bp meds on the baby.. All that said, I suggest you go ahead and take the pain meds. If it takes the baby a couple more days to come home because they're a little sleepy for feedings, oh well.. they need their rest right now too. The NICU nurses told me Lortab in the breastmilk is a lot safer for them than Lebetalol or other bp meds.

Next, don't pump all night! It is okay to give yourself at least one four-hour break without pumping during the night, just to catch up on your rest. It might feel like you're going to pop that first night, but your body will adjust to the night schedule quickly and you'll be surprised how good that extra hour of sleep feels!!

One more tip.. I wish someone had told me this sooner.. while my son was in the NICU, i tried to avoid pumping for a few hours before our time together so my breasts would be really full for him.. i didn't realize they can be TOO full and actually prevent the baby (especially a preemie) from latching on. I finally found out that he would latch on better if I manually expressed a little first to soften things up (washcloths come in handy!) This made all the difference for us and he actually came home just a few days later.

Good luck!

[challiday]

My little guy, Wyatt, was born at 30 weeks, extremely growth restricted (he was 1 1b 10 oz.). He spent 3 months in a hospital in Calgary (I'm from Toronto but he was born in Calgary while I was on vacation due to preeclampsia!!).

My advice to premie parents. Well, it would be hard to put it all down into words. The NICU/Special Care Nursery is so terribly arduous. But, if there is one thing I could say: Don't be afraid to cry and let people know how scared and tired you are. You will be amazed at the kindness and generousity that will come your way to help you get through those trying 'NICU' days. I think, in general, I tried too hard to be brave during my son's difficult hospitalization. Near the end, I couldn't contain my grief anymore and broke down in front of nurses, parents (especially my own), on the hospital elevator... I was so bolstered by the comfort I got from others. It gave me strength. Show others that you are sad and they will give you the strength you need to make it to that day when the nurses finally say, "your baby is ready to go home"! Oh man--THAT is a truly remarkable moment.

ALSO! If you are committed to breastfeeding, there is hope if your baby has had a long hospitalization. My son was fed through a tube, IV, and bottle during his whole hospitalization and by bottle for a month at home. All this time I daily tried to get him interested in breastfeeding--I would try latching, nuzzling, etc. Some nurses encouraged me. Others didn't tell me to stop but didn't encourage me either. Regardless of what others thought, I was just ****ed determined (I couldn't face endless months of bottle washing, etc.!).

At four months old, my guy started breastfeeding. He is almost 1 year chronological age and shows no signs of stopping. What a guy!

Christina from Toronto

[allic]

I'm another one who conquered the preemie breastfeeding task. I actually had a perinatologist and SEVERAL nurses that discouraged me from doing it. I even had one nurse tell me that my daughter would get out faster if I would just bottle feed...because it's "easier for them to pick up." Once my daughter mastered it (towards the end of the last day of her six week NICU stay), she REFUSED bottles until she was, (I think) about 11 months old (might have been 15 months old...can't believe I can't remember--either way it was until she took a sippy cup).

I loved your advice, it is so true.

Welcome to the foundation!

Your PE Sister,

[kara]

Swaddle, swaddle, swaddle. They like to feel contained! We wanted a little "cozy" like DD had in her isolette, and the nurses suggested using one of those "head bumpers" meant for use in a car seat. Lay it on the baby's sleeping surface (crib, bassinet,etc) and snuggle it up around baby's feet. You can tuck blankets around it and baby is all snuggled in. We used a travel bed/co-sleeper that fit right between our pillows. It had hard sides so we knew we wouldn't roll on her, and she got the benefit of our body heat (she came home in December in Wisconsin.

Twice a day to the nicu at "care" times really worked well for us. While we were there we felt useful and got to interact with her. I didn't feel bad about leaving her because I knew the best thing for her was to sleep and eat in her dark isolette.

I would spend the rest of the day getting ready for her home coming...finishing her room and cooking meals to be frozen for use when she came home, looking for clothing, and PUMPING! I wish I would have rested more! Get sunlight, when you can and ask your doc about taking a B complex vitamin...it calms and gives energy!

Take lots of flash free photos in the nicu. Have nurses turn down lights when you have your child out of the isolette.

A moses basket, wrap or sling is great to keep baby near and warm and you can still have your hands free.

[kelly1972]

All I can do is cry and say thank-you thank-you for everyones words of wisdom. I'm new to the NICU club. My DD Nicole was just born on Saturday and is NICU and I'm scared to death. I was just released from hospital today and I am feeling like I'm leaving her behind and I can't protect her. I know it sounds weird but that's how I'm feeling. I really liked the suggestions given and will use them. Again I really appreciate those of you who have been through this.

Kelly

[kgildeme]

Many, many good suggestions here! I just have a few to add:
1. Get a Caring Bridge site: it's a free webpage for families with a critically ill family member to post updates. We spent way too much time on the phone while Alice was in the NICU. If there is a next time, we will def. do caring bridge.
2. Know that gestation is not the best predictor of outcome. All babies are different and all babies have a different journey through prematurity. I had a collegue with a 34 weeker who did no NICU time, while my 36 weeker did 2 weeks and had lingering problems. Try to think of your child as an individual, not as a gestational age.
3. Take pictures, even if it's something you think you don't want to remember. I didn't take any pictures of Alice on the vent because it was so scary looking. I regret that now.
4. This has already been said, but it's so important that I'll repeat it: take time for yourself!!!! And don't feel guilty about it!!!! Go get a post-partum massage, go to a funny movie with your best friend, go get a latte and read a book for an hour or two. You will feel SO much better. Your baby will be fine and the hospital has your cell number if they need you.

[jacobkaden]

Advice - wow - where to begin???

1. Know that you are not alone and what happened is not your fault or anyone's fault. Guilt is a useless emotion, so try not to entertain it!

2. If you have spiritual beliefs, hold fast to them now.

3. Nurture yourself and your marriage. DH and I almost didn't make it. One month into the NICU experience we separated for a month and it was devastating, but we just could not cope with the terrible sense of loss/guilt. DH had also had a stillborn in his last marriage, which culminated in divorce, which didn't help our stress levels! Someone on here said it will make or break your marriage. After a month apart, we decided we would commit to making it work and thank God we did. Our marriage is now stronger than ever and we are both better human beings because of what we've been through! I cannot imagine how Jacob and I would have fared without DH - ugh!!!!

4. Read only about the issues that affect your baby. I read everything and it just overwhelmed and depressed me! At the same time, don't be in denial! Be pro-active about your baby's care and be on top of any developmental or physical issues that are affecting your baby. Not all preemies turn out just fine, as I read on here, nor is gestational age an accurate predictor. Every preemie is different. The best thing you can do is have a positive attitude and be your baby's strongest advocate.

5. Don't live at the NICU. It will drive you crazy. Spend a few hours each day and don't feel guilty about taking a break, sometimes even a day off! You have to preserve your energy, as the NICU is only Stage 1 of a very long journey with your preemie.

6. Save those important keepsakes and take lots of pics. I didn't keep a journal, but I think that's a great idea or a website.

7. Get support wherever you can - a parents' support group, family, friends, social workers, spiritual advisors.