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preemie advice (x-post)

post #1 of 27
Thread Starter 
Hello all,

Thought I'd put this out here because I know we have some wonderfully knowledgeable women about just about everything around here.

The short story- SIL just had twins at 32 weeks. Long story getting there. But here we are. Now I am the research freak and have to know everything possible- she and BIL not so much. They do generally appreciate info that I gather though. That being said- those of you with knowledge or experience with preemies what should they be looking for? What questions to ask? What's important? I already printed off some info for them on kangaroo care (they had never heard of it....) They're not in the hospital I would choose, but the nurses seem nice enough.

Medical info- they are good sized- 4lbs 3oz and 4lbs 12oz. Both are currently breathing on their own but on pressurized ox to keep lungs open. Both have been on vents at one point. Both continue to have spells where they stop breathing. Both are under billi lights currently. Near as I can tell from info so far- one is being given a bottle, the other has a feeding tube.

more back story and responses from other thread:

pushing kangaroo care- I think BIL (the dad) will take to it. not sure about SIL

mom is pumping, but has been on vicoden and they can't risk giving it to babies yet. She will keep pumping. One of the reasons I don't like this hospital is they love bottles and pacifiers SIL and BIL had their last daughter there (at 35.5 weeks) they kept her for 10 days (bogus reasons in my mind... another story) and SIL couldn't get her to the breast for about 3 months. To her credit, she DID keep pumping and giving breastmilk but she wouldn't fight them on the bottles.

SO- they will have bottles and pacifiers most likely.

ALSO, history- with the last dd there, BIL and SIL only went up there for about an hour a day. If it was me I'd be living there, but only so much I can do to encourage that. sigh... SO, I'd be more than happy to do whatever I can to facilitate them being up there, but they seem to think an hour or two (if that... ) is more than enough.

Oh, on putting them together... I couldn't agree more. Don't think this hospital is set up for that. If they were mine I'd move them to a different hospital (well I would have moved me before they took them, but oh well...) Basically they are at the edge of the level of care that this hospital can deal with.

Thanks for any info or insight.

post #2 of 27
Thread Starter 
post #3 of 27
Congrats on your new little neices/nephews/combination (did you say which?)!

Born at 32 weeks they should be able to come through their preemie milestones and do quite well over time. This is the good news for most folks with preemies born that far along.

Your post seems to suggest they are in a Level II hospital not a Level III hospital, though you indicate the babies have been on vents at one time, presumably in the same hospital, so that would make the hospital a Level III. I'm not clear on what you would be looking for that the hospital is not providing, beyond having the babies together. If that is important to the parents and your research shows it would be particularly helpful in the case of these babies, it might be worth risking a move, but moving two rather fragile babies who are already getting excellent care might be more risky than the hoped-for benefits of said move. That being said, if you really feel a move is in order, there's no harm in suggesting it to the parents.

I'm horrified to learn that the hospital is telling mom she cannot give her milk to her babies because she is on Vicodin. This is absolutely untrue. She should be pumping and taking the milk to the hospital. The hospital's IBCLC (International Board Certified Lactation Consultant) should be brought into this situation ASAP! This has to be a Level III hospital so they are bound to have LCs on staff. This would be a move I'd push for if I were you. Contact the LC yourself, find out how to get an appointment, and let the parents know you can set it up for them. Don't hesitate. The LC can also give both encouragement and specific strategies for pumping and for getting babies to the breast as soon as the docs indicate it is OK. Also, the LC can help go to bat on the kangaroo care issue, which is often a precursor to BFing for preemies - when doing kangaroo care the baby will sometimes lick the nipple or begin to suckle a bit. There's so much a good LC can do here - I credit much of my success at BFing my preemies and their constant and current good health to my LC from the hospital, with whom I still keep in touch I might add.

Visiting a hospital where your babies are preemies and being cared for by professionals is agonizing and terrifying. Doing this while attempting to care for another little one is heartbreaking. You as a caring sister/sister-in-law/new auntie can help by offering child care during their visits, offering to make regular visits yourself, bringing food to their house, and of course continuing to do research for them. Any or all of these things help them know they are the parents and their babies need them. This message is hard for parents of preemies to hear through the loud cacophony of nurses, doctors, and beeping machines that are keeping their babies going right now.

If you have concerns that you feel are not being addressed adequately, you can also contact the social worker for the unit where the babies are and ask to speak to her/him with the parents involved. You can all ask your questions and the social worker can recommend further reading and resources and can even be helpful in communicating with medical care staff. We loved our social worker as much as our LC!

Your family is fortunate to have you! Keep up the good work and best wishes to the new little ones!
post #4 of 27
Thread Starter 
Thank you thank you for the thoughtful reply! You are right- this hospital has a level II not level III unit. The babies (boys) have been at the very edge of what they can provide. There was talk early of transferring them, but they have come back within the range of level II. If it was me in the situation, I would have transferred myself into the Texas Medical Center before the section was done (it was not emergency) BUT, that's me. They will be staying at this hospital (unless a medical reason forces them to transfer). I will say that the nurses at least seem nice.

The hospital just seems behind. Dead set on bottles and pacifiers (the good children's hospitals in town will do cup and syringe feeding) And the top hospitals here have family suites set up to encourage parents to stay with their babies. Here the mentality is, sure come visit, then get out of our way.

Apparently the vicoden couldn't be chanced because of it's slight depressive tendencies (??)- the babies are on caffeine already to keep them breathing. Mom is off the vicoden now and the babies are now on (some? all? not sure) breastmilk I will say that the mom is a very dedicated pumper. Pumped for about 3 months with her last one after she wouldn't nurse because of bottles at this hospital. Then finally got her to the breast. (now why she won't try to avoid that is BEYOND me, but... )

I want to encourage them to spend time with the babies, but I'm not sure how to do that and not sound pushy. I'd be grateful for any wonderful advice there.

In good news, the hospital suggested kangaroo care, and it is to start today (well, with one boy- they will be "allowed" to "handle" one twin today. not the other. gggrrr) So that will be a big plus.

Thanks for the info on a social worker. I had no idea there would be one. It makes perfect sense though. Hopefully I can get BIL and SIL to listen enough, but that is great to know (and hopefully a good support system for parents.)

Thanks again for all your advice and ideas. Let me know if there is anything else. I really want these little guys to get the best start. I can't fathom being away from tiny babies like these (as someone who has a 4 month old who's never been farther than 2 blocks away... ) Babies need mom and dad. I just need to find a way to get that point across without sounding judgmental.

post #5 of 27
Hi Angela,

I just saw your post & had to chime in quickly. I agree with all of what AmyY said.

My twins were born at 32 weeks, 6 days and were the same weight as your SIL's twins. I had a c-section and was on quite a bit of vicodin for the first 2 weeks or so and there was never an issue with them getting my breast milk. My babies did fine.

Kangaroo care is very important. They should try to do that as much as they can. It's good for dad too--helps him bond with the babies.

I wasn't able to put my girls to breast until about a week (I think--it's all a haze) after they were born and I regret it. I also had to pump for 3 months before they learned to nurse off of me. I'd do everything to avoid that, if I had to do it all over again. It sounds like the mom is committed to nursing though, if she's done this before, so it's really her choice in the end.

I'm confused. Are the babies together, or do they have them separated? Research has shown that twins do better when put together in the NICU. I can find the info. for you if you'd like. Right now I've got two hungry toddlers with dirty diapers, but I'll come back later to give you some links.

Good luck. Those babies are so lucky to have such a caring, loving aunt fighting for them.
post #6 of 27
Thread Starter 
Thanks for the post! Whatever the deal with the vicodin was is past, thank goodness and they're getting breastmilk now. They "got to" hold both boys today and amazingly both really seemed to perk up from it (well, DUH!) SIL and BIL spent a whole 3 hours up there today- the most time they've spent yet. Hey, it's an improvement. The boys are NOT together. Sigh. But apparently when the ivs come out (soonish, maybe?) then they will put them together.

Overall things are looking good at this point, they may be able to bring them home as early as 35 weeks.

I got them the new Sears - The Premature Baby Book for Christmas, so hopefully there will be some good info in it.

At this point I'm just working on encouraging them to spend as much time up there as possible.

Thanks to everyone for your input- let me know if there's anything else!

post #7 of 27
My girls came home exactly 2 weeks after they were born, just one day shy of 35 weeks gestation. So it's very possible that they'll come home around that time.
post #8 of 27
Obviously, I don't know the dyanamic of their family, but I wanted to chime in that when my twins were born at 32 weeks and spent four weeks in the NICU, I chose to spend 1-2 hours in the morning, 1-2 hours in the evening and 1-2 hours at night. I did NOT choose to live there like some people do/would, and I feel OK about this choice. I just felt like my 2 year old really needed me to be around at least SOME of the time. It is so hard and so heartwrenching to choose between your babies, and it is so overwhelming.

Do both babies have feeding tubes? I was adamant that my babies got NO bottles, and the staff respected that, and we breezed through breastfeeding. Yes, that meant feeding tubes longer, but it made for really successful breastfeeding.

Oh, and from my understanding, pacifiers for preemies are not all bad. My babies did not have the suck reflex when they were born, so it was a good sign when the nursed could stick a paci in and they knew what to do with it.

Warm wishes to all!
post #9 of 27
Thread Starter 
Thanks for the input! I would so TOTALLY understand if they were spending the time with the older dd, but they're not. She really needs them right now too Luckily she's used to spending time with grandma and that's where she's been. Last I heard they hadn't let her see the babies yet, though she's been begging to. Hard call to make.

One babe has had a feeding tube, my understanding is that the other hasn't and I THINK that neither does now. SIL (mom) is experienced at pumping and doesn't seem bothered by what problems the bottles will cause so I'm not going to put a lot of pressure on that point. I can grumble about it here though...

I wish they'd make multiple trips, but it's one trip a day. I'm going to work on gently encouraging time there and facilitating it (with watching the older dd) if needed.

Things are looking up. I'm thrilled that they're both getting breastmilk and some skin to skin time. I think that will help SO much.

thanks to everyone for all your thoughts and ideas. I love this board!

post #10 of 27
I'm glad the pumping is going well and the kangaroo care. As far as children in the NICU, there was a family that brought in their children and it sent me into hysterics almost. Children and NICUs don't mix for so many many reasons.

Unfortunately the fact of life of NICUs is that they are about medical care. Children are bringers of disease. I'm sure you will find that a horrifying thought but I was terrified when the children visited next to my girls' isolettes. We checked and checked and checked and checked to make sure our girls didn't catch anything. I was thinking about your disappointment with your relatives and thinking you would have been similarly disappointed in me. My doctor prohibited more than three very short visits a day. No kangaroo care. Bottles from day one. I didn't even get to see my babies after the c-section for a loooooong 48 hours. Bonding? Weeellll, I understand that some moms fall in love with their babies at birth. I began to do this at about 6 months.

And yet - we're still breastfeeding. We co-sleep. We are most definitely bonded. Year two of raising twins has been heaven compared to the hell of the first year. Had you been in my life at that time I would have needed a complete lack of judgment and total unconditional support. That was what helped me through the many many many problems I faced with my health and the issues caused by the girls' prematurity.

I do totally understand your frustration with your relatives choosing a comparatively inferior hospital in a city with world class medical care for infants. And the longer I am a mom and the farther away I get from the many problems we faced in the beginning, the more I understand moms like you who understand and experience the mother/child bond as preeminent from the beginning. Your relatives are very very fortunate to have you as an example of what will be possible once their hurdles are past, and as a support and source of well-researched information right now. Please keep reminding yourself that EVERYONE is taking away their power right now, and one way you can give it back is to let them know how great they are doing, and how much their babies need and already love them, and you can tell them all that good stuff that you just automatically felt once your baby was born. Those feelings that were instinctual for you will be learned by them in time. It's totally natural for parents of preemies to feel very different about their early parenting experiences than parents of full termers.

Also - one three-hour visit to an NICU is an exhaustion beyond power of description. That would be one thing to commend them for. And remember they may well be calling the nurses every few hours or more frequently for updates. If they are not, and do not know this is an option, you can certainly let them know, they will probably be relieved to know they can do this.

Best wishes and great job auntie!
post #11 of 27
Thread Starter 
Thanks for your thoughts Amy!

Just a quick update. The boys are in incubators now and will be put together soon (as soon as the smaller one is off the caffeine iv.) They'll spend a few days together then they MIGHT be able to stay together when they come out of the incubator. Both seem to be doing well. One ran a temp one night so was on antibiotics for a bit, but is fine now. I gave SIL and BIL the new Sears Premature Baby book for Christmas and it was a big hit. Things are looking good and they may be home in as little as two more weeks. Thanks to all for all your support and ideas

post #12 of 27
Awesome news!

I just saw something on another thread which of course I can't find again, but it was a post written by an NICU nurse who is also an MDC mama. Anyway, she said the amount and kind of holding/caring for the babies that a parent gets to do depends largely upon the discretion of the nurse. There is no standard, and each nurse is different. Some nurses assign lengths of time and types of care arbitrarily, some let parents hold and care for the babies as much as they can/want to. She said to keep asking and if one nurse says "no" then ask the next nurse who comes on, because there is no hard and fast rule.

I sure wish someone had told me that, I thought there were definite guidelines and I didn't push for some things I would have continued to push for had I known that it was basically nurse's discretion!

So - another thing you might let your family know - ask and ask again and sooner or later (hopefully sooner) you shall receive.

Great news again, so wonderful to hear about the babies' progress! Please keep us updated!
post #13 of 27
Thread Starter 
Interesting about nurses setting their own rules. I am glad that the medical establishment can work the wonders that they can, don't get me wrong, but I find the whole system infuriating. Drives me up the wall. I am SO glad I can avoid it so much of the time. Watching this whole thing has made me 10xs more determined to keep away from the medical system. Babies belong at home with mom and dad unless something is wrong.

thanks again for all the support- I'll post when I hear anything new.
post #14 of 27
Just to chime in, definitely tell them to keep asking! My second baby spent some time in the NICU due to breathing issues. For a few days we had a TERRIBLE day nurse who wouldn't even let me touch him at ALL during her shift, but yet the night nurse would let me hold him however long I wanted. But, we were blessed a few days later with a nurse who thought the more I held him the better and she'd close the curtain around us and let me hold him for hours. Thankfully we never got terrible nurse back and once we were able to bf, good nurse let me nurse almost constantly, and ds went home very quickly after that.

It's amazing the difference in care from hospital to hospital and even from shift to shift! Good luck to your SIL/BIL. Surviving a NICU stay is an ordeal!!
post #15 of 27
Thread Starter 
Thanks for the input. Unfortunately BIL and SIL are big don't-rock-the-boat type people... : They're ever so grateful every time the staff "lets" them do anything. Like it's not their kid. Sigh.

Latest update- mostly good- seem to be doing better. However the smaller twin is anemic (possibly due to all the blood they keep taking for tests according to BIL) they're talking transfusion. Is this something that happens a lot with preemies? I don't trust our blood supply enough to take a transfusion for an adult except in an emergency situation- I definitely would be uncomfortable with a preemie. Also I know that the twins are O+ and B+ (one of each) yet they want O- blood.... just cause? Because that's what the bank needs and it won't go to their child? (just count toward their account so to speak) or is there a reason?

Thanks again for all the good info!

post #16 of 27
Thread Starter 
bump for any advice on my last update....

post #17 of 27
Thread Starter 
anyone? really wondering about the anemia/transfusion/blood type issues...
post #18 of 27
My twins were born at 32w3d. Neither of my babies had to have a transfusion but my dd came very close to needing one a couple times. The hospital we were at does allow parents to donate blood for the babies however we weren't told this in advance. I wouldn't have been allowed to donate though because I was anemic myself at the time but my dh could have donated but would have had to do it at least 2 days prior to a transfusion. We would have had him donate the day the twins were born had we known. My dh is O neg though and my twins are both O neg so there was no problem with matching.

My twins were in the hospital 36 days. My dd had a small nasel canula for a couple weeks but my ds was breathing okay on his own from birth. They wound up staying so long in the hospital because they both had apnea spells and they had to be spell free for 72 hours before they could be discharged.

I pumped milk for my babies from the beginning and I was taking percaset for the pain from the c-section and there was no problem at all with donating my milk. They were fed it in a tube for about 2 weeks and then in a bottle until they came home. I didn't start nursing them until after they came home. It took me 2 days to get my ds nursing full time and it took about a week for my dd. I tried nursing them in the hospital but got really discouraged by it. I could breastfeed if I wanted to but then they would still try to feed the baby the entire bottle.
post #19 of 27
Thread Starter 

Thanks for popping in with your experience. No real new updates... just kind of marking time at this point.

post #20 of 27
Thread Starter 
Well, apparently they found someone with O- and have scheduled the transfusion for tomorrow or the next day. I would have tried to avoid it, but that's me.... SIL and BIL have been spending more time up there and the babes may be home in a week.

thanks to everyone who has put in their experience. If anyone has any new insight I'm still listening!

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