like everyone else said keep track of the babies development and also with the formula freebies and the ssi when I had to be unemployeed because him coming home they gave us 600 a month which helped but I forgot to put my fiance on there and when I did it went down a little but make sure you add your husband or boyfriend if they are living with you because if not the state will sue him for child support and when they find out hes living with you you will have to pay the ssi back this happen to a girl on another preemie website im just glad I added my fiance. And keep your preemie inside as much as possible i know i got incredibly lucky bc my motherinlaw doesnt work so she comes to my house and watches him every time but for other mothers try to start thinking of a way to keep them indoors in the winter because my baby was never once sick and I believe its because he stayed inside and only went out for dr appts. Also there are organizations that provide free therapy for your preemie just go to your drs and ask thats what i did.

My daughter was in the NICU for 3 months so I probably have tons of advice. The first thing I would share would be to not be intimidated by all the professionals taking care of your baby. This was my first child and I can't tell you how disconnected with her care I felt at my first visit to the NICU the day after my emergency c section. The little one I thought I would be taking care of had instead been cared for by others and not held by her own mom on her first few hrs in the world! Take care, you will have plenty of time to bond with your baby and the chance to do many of the things you'll watch the nurses do at first. Also, kangaroo care by both mom and dad will help you feel more connected - so will baby massage. They are both proven to be great for brain development and pass along important antibodies. Plus that kind of skin to skin contact can only be done by mom and dad.
I also recommend finding out when the doctor rounds and be there every day if you can at that time. Keep a notebook of everything your doctor shares, esp during the beginning when condition maychange daily and you maybe too emotional to completely process some of the medical jargon thrown your way. Don't be afraid to ask your neonatologists questions or ask why they chose a certain treatment. A good doctor will answer these questions and fully explain in laymen's terms. If you have rotAting doctors, get close to the one you like best and get their number. Even if they are not on that week, use them as your contact if you cannot get answers from another doctor or get one that likes to round when you cannot be there. Also if a nurse cannot get ahold of your doctor don't be afraid to ask to speak with the nurse practitioner. They are all there to care for your baby and that means helping you to stay informed and being aware of the day to day medical decisions and evaluations done.
I feel I have so much more to share but will leave my last comments on breastfeeding. If you would like to excusively nurse you will find many challenges to that in the NICU with supplemental bottle feedings to help conserve calories and possibly human fortified added to your milk to increase baby's calories. The part no one shares is that although these steps may be medically necessary they may lead your babyto view the breast as non-nutritive and come to prefer the bottle for full feeds. It is diffcult to move toward full breast feeds when a baby is extra full from fortified added to your milk. It increases the length a baby is willing to go between feeds and will doesn't help to give your babythe drive at the next breastfeed once your baby has the stamina to really start working on nursing. My advice is just stick with it! It took us approx 4 months to get to full feeds from the breast. It may sometimes feel like you will never get there, but you will! Even a baby that becomes bottle 'addicted' can become a full time breastfeeder with work! It may take many tears (from both of you) and some days in bed where breastfeeding is your only agenda item but it can be done. I found out after my NICU stay that there is also a feeding system that can be used while nursing - I believe it is called SNS. I wish I had known about this during our stay. This may help your baby to avoid developing a preference to the bottle before they have enough stamina to entirely breastfeed.
Remember these times but alsoknow your NICU stay will soon be a distant memory of the first challenges and feats you and your baby surmounted together!

If possible, bring your own breastfeeding pillow. There were some in the NICU, but never enough to go around. My son was bottle-fed, but we used it for him too. It makes you feel more "secure" when handling a preemie.

1. Pump, pump, and pump some more...my 31 weeker was rejecting the preemie formula for the first two days. As soon as I was released from the hospital and home, I pumped and brought in my breast milk. It was a night and day difference with Elizabeth's reaction. She instantly did not have any residual in her belly and constantly continued to increase the dosage of breast milk with each feeding. Our bodies know we've had a preemie and our milk becomes more beneficial for our little ones.
2. Take pictures and share with family that can't make it to see you or the baby.
3. Sign up with www.shareyourstory.org through the march of dimes...and share your story, read others stories, meet other families who have been through what you are facing.

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.

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.

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

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.

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,

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