Video for parents of 33-36 preemies

[sbrinton]

Our NICU is putting together a video for parents of 33-36 week preemies so that parents have a better idea what to expect. The video would be shown to parents who are anticipating a preterm birth as well as to parents who have found themselves in the NICU with a preemie unexpectedly.

I'm looking for ideas as far as content. What would you have wanted to know?

How did things go with your 33-36 week preemie?

[musiclady]

things i found helpful:

nursing staff that showed me how to care for her. she was 31w6d and 1060g. very tiny and looked so frail....

hooray for the first nurse who helped me kangaroo.
-getting her out of the isolette on my own
-an explanation of the monitors
-attend rounds (if possible)
-advocate for your child if something seems amiss
-get involved asap. it promotes bonding and also helps you be more relaxed when you come home
-say thank you and be kind, even when it's hard
-take tissues :-)
-if you pump, stay on schedule. take your pump to the hosp if necessary.
-it *will* get easier.

the last one i heard from another parent the first day i visited lilah. i had PE and was on mag sulfate so i kind of lost a day. she was on photothreapy for a 6.1 bilirubin count. but she was soooo small all i could do was cry. it wasn't the lights or jaundice. seen that before. it was the reality of a pregnancy that ended 2 months too early, a baby that was too small (2lb5oz), and still feeling bad from mag sulf. it all seemed so surreal. i was just standing there with DH, bawling. another mom looked at me with kndness and experience and said:

it will get easier.

Lilah is now 9wks old, one week past her EDD. she is close to three times the size from birth- over 6lbs and now 20in long. it was emotionally bankrupting, but we made it. i still sometimes wish that i could have experienced the full pregnancy since it was my first. i admit to being gunshy for a second. i really don't want to do this again (this way). anyway- we had a great support system, and a lot of prayers.

the first sticky is a good read too.

[Lousli]

I had one at 33 weeks and one at 36 weeks. My 36 weeker was fine and could come home from the hospital right away, but was a little jaundiced, very sleepy, and had trouble nursing. I would have liked to know the tricks to get her a little more alert to help her nurse and that it was important to wake her to feed her (her sleepiness would make her sleep at times she should have been eating). I would encourage new moms to get in touch with a GOOD lc and get a breast pump immediately.

My 33 weeker needed to be in the hospital for 23 days as mostly a feeder and grower. I wish I had spent more time in the NICU getting her to nurse rather than giving in to bottle feeding (even though it was breastmilk). The transition from bottle to breast was tough for her, it took 3 months. I would have liked to know in a non-scary way about a's and b's and the carseat test (which she failed twice before passing) and that I could ask them to test her without me there, since it was so emotional for me. I'm sure I could think of more, but my former 33 weeker and now 4.5 year old needs to get into bed! I'll try to come back with more when we're both not so tired.

[sbrinton]

We had a 35 weeker who went home after just 4 days and then a 31 weeker who was mostly a feeder grower too.

I'd like to see a lot of content about feeding - especially breastfeeding. The hospital has great lactation staff and is very supportive of breastfeeding in the NICU. I think tips about how breastfeeding a preemie is different from a full-term baby would be great, as well as how to overcome common obstacles.

I'm hoping we can pull together pictures from families who were in the NICU. I think it would be helpful to see what babies look like at this point.

Car seat education is a great idea. It's a little hard to find car seats that fit little ones.

And you are right, As and Bs are still very common with late preemies, especially 33-34 weekers.

Maybe a story or two from families who had been there?

[waldenmommy]

Information about all the monitors- the who, what, why of them
Information on jaudice and bili levels
how these babies are different from traditional newborns. My son was 35 weeks and spent nine days in the NICU. What to expect when we got home would have been great
feeding information, esp about loosing weight post-hospital
information on lungs and disease, esp if it is the winter
car seat info.
sleeping info
mildstone information, what to look for, how long to expect deplays
information on local EI centers.

[sbrinton]

Thank you all. I sent the info off to the team thats working on the video...

[mommy2maya]

I had a 34wk who spent a day in the nicu being monitored- not even quite a day- she was born at 8pm and was out of the nicu at around 2 the next day. She had monitors for 24hrs, and since she had not a's or b's, they came off. We went home together 4 days later. We did have a home healthcare nurse come out daily for about a week.

Looking back on it, I was sooooo nervous having her home. The first month was so nervewracking. She had a hard time holdign her body temp, so was dressed in many layers of cotton and wool. She was a very shallow breather, and slept soooo sooo much. She basically only woke to eat for a few months. She gained well, and was at an average nb weight by the time she hit her due date, and gained well up to around 9m and then slooooowed down.

[DocsNemesis]

I had a 32w 6d baby with my last baby.

He learned to eat from a bottle; he was under bili lights for awhile; he spent time growing; he had mild preemie apnea that kept him in the hospital a lot longer than he shouldve been there due to hospital policy.

Here's what I learned. It does get easier. It's horribly painful (at least for me) while they are stuck in the hospital, but as you get used to the routine, it gets easier.

I also learned that pushing for additional tests to get your baby OUT of the hospital can be a good thing. My son sat in the PICU (too well for the NICU) for an extra 2 weeks because of his apnea. It wasnt until we pushed for tests to make sure he was ok, and then took him home AMA that we got him home. Once home, his growth went up by leeps and bounds-I guess he was as happy as we were!

I also learned, from here, that preemies sometimes take until after their due date to learn breastfeeding. The hospital was probably doing the right thing and kept pushing me to try nursing, but each time ended horribly and stressed him out-and me too! Its very frustrating when you cant get them to nurse. I was told by other moms on here to relax about it, try it once a day or so, but that a lot dont catch on for quite some time. Literally ON his due date, he latched on and started nursing like a champ!

That leads me to another lesson. Especially for first time parents, but even for veterans like myself-it is VERY nerve racking going from bottle feeding and knowing how much they are intaking to breastfeeding exclusively. You get so worried they arnt getting enough! I just had to let go and watch him. Once I actually saw him continuing to grow-and grow faster!-I wasnt worried anymore. Its especially worrisome with a preemie-they want to eat non-stop once they get a bit older and are more awake. But dont worry, just watch their weight and if they start losing, then you can worry.

[Liba613]

Let them know that each baby is an individual and that even though X, Y or Z may be expected at any gestational age 33-36 weekers are preemies. My son was born at 36w4d and was ventilated and has long term issues from his prematurity.

http://www.onetruemedia.com/shared?p...edium=text_url - this is my photo montage from the first six weeks of my 36w4d baby's life.