Resources for first time mom of a preemie?

[Natalieclare]

If you had a preemie, what were the most helpful things people did for you?

 

What books or websites were the most informative? Encouraging? Instructive?

 

What did you wish people would NOT have done??? not have said?

 

A dear friend of ours is looking like she will have to deliver about 8-9 weeks early (in a couple of days). We'd like to be as supportive and prepared as possible.

 

Thanks!!

 

ETA: My dds and I want to learn about the needs of the baby, but we are also looking for ways for our friend to be able to educate herself about preemie-dom, too.

Edited March 1, 2012 by Natalieclare

[melissad2]

I didn't have a preemie but my friend had a preemie in the NICU for 5 weeks. The things that got them through we're gift cards to local restaurants, people offering to do things around the house that get neglected when you are virtually living at the hospital. Yard work, feeding/walking animals, general things like that. She should appoint a "spokesperson" so that all updates come from the same source instead of her having to tell the same things to different people all the time. Friends and family will be concerned and calling for info and updates....so if they could organize that somehow she won't be bothered by tons of phone calls.

[Natalieclare]

I didn't have a preemie but my friend had a preemie in the NICU for 5 weeks. The things that got them through we're gift cards to local restaurants, people offering to do things around the house that get neglected when you are virtually living at the hospital. Yard work, feeding/walking animals, general things like that. She should appoint a "spokesperson" so that all updates come from the same source instead of her having to tell the same things to different people all the time. Friends and family will be concerned and calling for info and updates....so if they could organize that somehow she won't be bothered by tons of phone calls.

 

 

Spokesperson...good idea! Gift cards to local restaurants...also good idea!

 

Thanks!

[fairfarmhand]

I loved it when people actually paid attention to the "please don't touch the baby, he is fragile! Please wait to come over till the baby is a little older. We don't want him to get sick." After we came home from the hospital.

 

I completely understand that she was beautiful and oh so tiny. I understand that people were excited. But a preemie is so delicate.

 

If I were in your shoes, I would be running my mouth to my friends about "Oh, I am excited and I would love to go up there, but I know the baby will be fragile for a while. I will just call instead. I am going to take dinner over there once they get home from the hospital." yada yada...just to remind people that this baby is a little different from a full term infant.

[Shannon in TN]

My ds was 6 weeks early and in the hospital for 25 days. My husband is military, so he was gone a good bit of this time and I had my dd to look after. The blessings for me were people who brought meals, and friends who would take dd so I could visit the hospital. Once ds came home, the meals and help with dd continued, which was great because I was so sleep deprived those first few weeks (he was still on a 3 hr eating schedule whe he came home).

 

There was a couple of forums I visited, like this one - one in particular, but wow, I haven't been on those in so long, I'm not sure I could find them. They were great for knowing I wasn't the only one, kwim?, but sometimes they got really depressing simply because of the nature of preemies. Everyone was incredibly supportive and had tons of advice and it was a safe place to let go and vent and share. I wonder if I could still find it and if I'm still a member. I think it's a private forum, too.

 

I'll see if I can find it and message it to you.

[NavyMommy]

DD wasn't a preemie, but was very sick and in the NICU for a month. For us the best thing was gift cards to local restaurants, gas card, and food that we could grab and go (granola bars, sandwich fixings, pre-cut produce). The last thing I felt like doing at night when I got home from the hospital was go grocery shopping. Also, depending on how close you are, one of the most helpful things my parents did was spend one entire day about a week before she came home cleaning my house. Everything, from top to bottom. When a baby's health is that fragile I was terrified of germs and bringing her home so that really helped ease my mind.

 

The March of Dimes website has some good Q & A type stuff that might be helpful. Also, there is a site called Caring Bridge where you can set up a blog to keep people updated on the baby. Our NICU had computers in the waiting room so I could update DDs site while we were waiting to be let back and reach everyone at once instead of having to call a million different people.

 

And lastly, if they already have other children I think one of the best things would be to offer to watch them so they can go see / spend time with the baby.

[TheReader]

I had a fantastic book that was very helpful to me with my 3rd preemie; even as one who'd done NICU 2x before, my 3rd was earlier than the 1st two and this book was a treasure: What to Do When Your Baby is Premature (link to amazon).

 

The other big thing is for her to not be afraid to speak out and ask questions; the doctors in my experience tend to forget that this isn't everyday normal for most people, so explanations can be seriously lacking. The nurses in my experience are usually much better at explaining things, but even at that, if she doesn't understand something, ASK. Even just to clarify the simplest thing.

 

If she plans to breastfeed the baby, she still can. Depending on the hospital and the set-up they might make it hard or easy, but either way it can be done. If she plans to, she will need to rent a hospital grade pump because it is likely to be weeks before her baby is strong enough to actually nurse; she will read of some who say that feed tubing should be the exclusive means if baby wants to go on to nurse, and the hospital may disagree with this because baby needs oral stimulation to learn to suck and such. *Either way can work.* I'll be going against the flow to say this, but if the hospital does things a certain way (insists on bottles for a time, etc.) she doesn't *have* to fight them in order to successfully nurse later on. My youngest nursed exactly one time in the hospital before he came home, with lots of bottles the rest of the time, and it did take more work but he went on to nurse for 3 years. So, I guess I'd say, don't let anyone scare her about one bottle or ten bottles or a hundred bottles meaning she'll never successfully breastfeed.

 

And, the single best thing a nurse told me while my youngest was in NICU (he was 9 wks early, in NICU for 7 wks) was to look on this time as bonus time. These days of seeing him outside the womb, growing, catching up to where he was meant to be -- it's bonus. Scary as all heck, but bonus. Watching him, touching him, holding him while he does the growing that is meant to take place in the womb is a scary but beautiful gift. I would encourage your friend to cherish those days and nights, embrace the NICU as her baby's first home, get to know the nurses as much as possible, be willing to spend as much time as possible there, yet willing too to go home and rest as needed because the nurses will love and care for her baby.

 

It's hard. No doubt about it. People will tell her all sorts of things, how she needs to go home and rest because once baby gets home she'll be tired; people will tell her to never leave her baby's side because otherwise he'll never bond with her. Probably she'll hear everything from every extreme and the truth is somewhere in the middle and a little bit of all of it. Going back & forth to the hospital can be a lot more tiring than having baby home, and baby will bond because he'll know her scent and touch and voice.

 

Oh, and, it's a roller coaster. My youngest was meant to come home on April 1st and when we went to pick him up he spiked a fever and wound up staying another week. He had gone from healthy that morning to a raging infection that afternoon and wasn't healthy enough to go home after all. Such is the life of the NICU.

 

Mostly though, nothing any of us say can really, truly prepare your friend. Walking out of her hospital room, being wheeled out while her baby stays behind.....it's one of the hardest things I've had to do and I've done it three times. it never gets easier.

 

For you, yes, gas cards, parking $, restaurant gift cards, meals for at home, anything to help out with the added expenses of visiting the NICU, especially if it's not near her house. That, and helping her fend of well-wishers who don't understand why everyone and his brother can't just come see the baby the way they might at a regular hospital.

 

it's really great of you to invest in this family in this way. Praying for your friend.

[Shannon in TN]

I had a fantastic book that was very helpful to me with my 3rd preemie; even as one who'd done NICU 2x before, my 3rd was earlier than the 1st two and this book was a treasure: What to Do When Your Baby is Premature (link to amazon).

 

The other big thing is for her to not be afraid to speak out and ask questions; the doctors in my experience tend to forget that this isn't everyday normal for most people, so explanations can be seriously lacking. The nurses in my experience are usually much better at explaining things, but even at that, if she doesn't understand something, ASK. Even just to clarify the simplest thing.

 

If she plans to breastfeed the baby, she still can. Depending on the hospital and the set-up they might make it hard or easy, but either way it can be done. If she plans to, she will need to rent a hospital grade pump because it is likely to be weeks before her baby is strong enough to actually nurse; she will read of some who say that feed tubing should be the exclusive means if baby wants to go on to nurse, and the hospital may disagree with this because baby needs oral stimulation to learn to suck and such. *Either way can work.* I'll be going against the flow to say this, but if the hospital does things a certain way (insists on bottles for a time, etc.) she doesn't *have* to fight them in order to successfully nurse later on. My youngest nursed exactly one time in the hospital before he came home, with lots of bottles the rest of the time, and it did take more work but he went on to nurse for 3 years. So, I guess I'd say, don't let anyone scare her about one bottle or ten bottles or a hundred bottles meaning she'll never successfully breastfeed.

 

And, the single best thing a nurse told me while my youngest was in NICU (he was 9 wks early, in NICU for 7 wks) was to look on this time as bonus time. These days of seeing him outside the womb, growing, catching up to where he was meant to be -- it's bonus. Scary as all heck, but bonus. Watching him, touching him, holding him while he does the growing that is meant to take place in the womb is a scary but beautiful gift. I would encourage your friend to cherish those days and nights, embrace the NICU as her baby's first home, get to know the nurses as much as possible, be willing to spend as much time as possible there, yet willing too to go home and rest as needed because the nurses will love and care for her baby.

 

It's hard. No doubt about it. People will tell her all sorts of things, how she needs to go home and rest because once baby gets home she'll be tired; people will tell her to never leave her baby's side because otherwise he'll never bond with her. Probably she'll hear everything from every extreme and the truth is somewhere in the middle and a little bit of all of it. Going back & forth to the hospital can be a lot more tiring than having baby home, and baby will bond because he'll know her scent and touch and voice.

 

Oh, and, it's a roller coaster. My youngest was meant to come home on April 1st and when we went to pick him up he spiked a fever and wound up staying another week. He had gone from healthy that morning to a raging infection that afternoon and wasn't healthy enough to go home after all. Such is the life of the NICU.

 

Mostly though, nothing any of us say can really, truly prepare your friend. Walking out of her hospital room, being wheeled out while her baby stays behind.....it's one of the hardest things I've had to do and I've done it three times. it never gets easier.

 

For you, yes, gas cards, parking $, restaurant gift cards, meals for at home, anything to help out with the added expenses of visiting the NICU, especially if it's not near her house. That, and helping her fend of well-wishers who don't understand why everyone and his brother can't just come see the baby the way they might at a regular hospital.

 

it's really great of you to invest in this family in this way. Praying for your friend.

 

:iagree:

Incredible advice here!! I'd just like to add (it was something I hadn't thought of before) that I had to spend the night in the hospital before they would release ds so they could observe and make sure he would eat enough. It wasn't very restful for me, and it was frustrating, but I was determined to breastfeed him. Apparently, it worked because after a few weeks at home with just me, he refused to take a bottle again.

[GoVanGogh]

:iagree:

Incredible advice here!!

:iagree:

 

I had my son seven weeks early, after I had a seizure, so had issues on top of the preemie. :tongue_smilie:

 

Re: Nursing. It can be done. But I so wish I had been told that preemies often don't start nursing until around their due dates. I met with lactation specialists and talked with all the NICU doctors and nurses. It was later that my ob/gyn, from her own personal experience, told me that preemies generally don't get the "sucking reflex" until their due date. Sure enough, the day before his due date, he took off nursing. But I wish I knew that going in, it would have saved a lot of stress.

Hospital grade pump is the way to go. They can be rented by the month and the hospital should have info on where/how to rent.

 

DS was not yet nursing when he came home from the hospital and DH was tired of all the cleaning and such that goes in with pumping... He ran out and bought a second set of the "stuff" that needs cleaned often with pumping. Also, the hospital gave us cases of sterilized bottles - they were filled with water and you simply opened, dumped the water and pumped directly into the bottles. They were so handy. But we ran out and they are $$$ to buy. I hated pumping into the bags, so bought plain bottles and sterilized them and pumped right into them.

We had a system down, as I had to pump every few hours around the clock. Every other time I had to get up and pump, DH would get up and wash/sterilize everything for me.

 

Pumping was hard to keep up. My brother actually sent me the best advice - find your peaceful place, whatever that is.

Most times they tell you to look at a photo of the baby and it will relax you, so you can get more milk. Not for me. This stressed me out.

 

It is a huge roller coaster.

Yes, NICU babies are very fragile.

Don't go near if you are sick.

And - above all - obey the doctor and nurses! My mom was kicked out of NICU because she argued with the nurses. I so didn't need that! And a friend was giving a warning because she kept walking around to look at the other babies. :tongue_smilie:

[Lolly]

Agreeing with all that was said. Adding in money for snack/drink machines. It is a real roller coaster ride with lots of ups and downs. One thing that would have been nice that I didn't receive would be rides to and from the hospital. My babies were an hour away from me; I wasn't allowed to drive for a time; and dh couldn't take off that much time from work. (I just drove anyway.) Offers to keep other kids if she has them would also be invaluable. Basically, offer to do things that will keep her home-life going while they are spending a lot of time at the hospital.

[Amber in AUS]

My son was born at 25 weeks and spent 100 days in NICU. Can your friend visit the NICU before having the baby? It is a very overwhelming environment!

 

A lovely website i found was Peek-a-boo-ICU it is run by a NICU nurse and she is lovely. There are lots of FB groups for prems depending on the reason for the prem birth there are more specific support groups.

 

If she ends up with a c-section being available to drop her off or pick her up from the hospital so that she can visit the baby would be excellent. Caring for any other children, cooking meals, running errands, walking the dog, doing some gardening etc. I would have welcomed all of those things.

 

If you are close just being available for your friend to dump on would be good. NICU is a very confronting environment and as already mentioned it is a roller coaster ride. Things can go from good to bad and vice versa in an instant. It is hard to process and being able to dump on someone who's offering a shoulder would be good.

 

I found some of our friends were reluctant to celebrate our babies birth until he came home. I really wished that they would have sent cards, flowers, gifts etc to celebrate with us. We put a notice in the paper and he was just as important to us as our other 3 children who were born at full term. We were not deluded, we knew there was a very real possibility that Possum would never come home with us, but it was still important to celebrate him in the same way we had his brother and sisters.

 

Like others have said we have had to be VERY careful being around other people. We did not have any big celebrations or gatherings until Possum turned 1. Yes, everyone wanted to meet him but we were careful to limit it to a few people at a time once he was about 6m old and we have a VERY strict policy on people being well when they come here and us not visiting sick people either.

 

I did go on to breastfeed Possum. Our hospital was very pro breastfeeding. I pumped for 3.5m every 3 hours around the clock. It was an exhausting schedule to maintain but so worth it. He is still nursing at 17m! If she wants to nurse i suggest that she gets a lactation consultant onboard as soon as possible. Prems are able to nurse from 32-33w but hospitals don't normally encourage it. They are able to nurse whilst on CPAP although it is difficult. IMO there is NO reason she should not nurse her baby whilst they are in NICU or SCN (obviously there are exceptions when bub is vented or in reps distress etc). I mean if they are well and just need to grow why not let them feed?!

 

I would encourage your friend to be in the NICU for the Dr's rounds if possible. They make all their big decisions then. Being there can sway their opinions and shows that you want to have an input into your babies care. I know lots of parents who never met their babies Dr's whilst they were in NICU because they are not around all the time. The make the changes and the nurses carry it out. She should also research whatever conditions her prem faces if any. There are obviously lots of different issues that can come up. Not all Dr's or hospitals have the same protocols for treatment being able to advocate a different opinion can be helpful.

 

Your friend should take LOTS of photo's and write a journal of the things that happen each day. Even if it's just a few notes it will be previous later. Take footprints as soon as the skin is hardy enough, the nurses can advise on this, might take a couple of days or up to a week.

 

I would be happy to personally e-mail or FB message with your friend if she would like. I am a volunteer for an Australian organisation called Miracle Babies Foundation and we provide support to families in NICU.

 

If i think of anything else i will come back. Good luck to your friend. Please do let us know how she gets on.

[Amber in AUS]

Oh, and one more thing. Whilst bub has arrived early that doesn't mean he will come home early. We were always told to work off the due date as a rough coming home date. Anything earlier was a bonus. Obviously is bub is sick that time can/will blow out.

 

Has she had steroid injections to help with bubs surfactant production in the lungs? If not and delivery is imminent she should make sure she demands them. If she elects not to have them she needs to understand that her baby will most probably have respiratory compromise when born and probably need ventilation. My friends baby was born at 32w she had the steroids and he did not require any breathing assistance. Obviously every baby is different but you have to give them the best chance possible.

[Annie]

Mine wasn't a premie, but he was in the nicu for awhile. The biggest thing I could have used was a foot rest for when I was sitting with him. I'm sure many hospitals are more mother friendly, but they had no where for me to sit other than a plain chair, and my feet and ankles got so painfully swollen from sitting with them on the floor for hours at a time so soon after having a baby/being pushed full of fluids. My mind was so foggy from being tired, on pain meds from my csecion, and being worried for my baby that I didn't think of asking my husband or mother to bring something for me to put my feet up on.

 

 

Mostly though, nothing any of us say can really, truly prepare your friend. Walking out of her hospital room, being wheeled out while her baby stays behind.....it's one of the hardest things I've had to do and I've done it three times. it never gets easier.

 

 

My baby was well enough that we knew he would be ok, and we knew he wouldn't be in for much longer, but this was still one of The. Hardest. Things. I've ever done. I cry almost every time I remember it. Leaving without your baby is just torturous. When I was discharged, I went to Walgreens to get my pain meds and then to Subway before heading back to the hospital. At Subway, a lady stopped me to ask when I was due (ouch), when I told her I had given birth a few days earlier, she then proceeded to ask me somewhat snippily where the baby was then (big ouch). I almost burst into a sobbing mess right there in the restaurant, and I'm proud that my hormonal self resisted the urge to be very ugly to her.

 

 

OP - I would probably just try to celebrate the birth, while being respectful of the fact that she probably can't have many people near the baby. I would also ask her what you could do to make *her* more comfortable. The baby has a NICU full of nurses looking after them, but it's very easy for the mother to push herself too hard especially if she's having a csection.

[dansamy]

This is not immediate NICU advice. It's for later. Don't compare her premature infant's developmental progress to that of any other infant you've met. I have three all born prematurely. Not one of them followed evenan adjusted schedule. My oldest was due three weeks before my niece. I hated talking to my sister because she was always telling me what new milestone her baby had reached. And my baby was on a completely different timeline.

[Dobela]

Our daughter was 14 weeks early. As she is adopted, we didn't know about her until the day she was released from the hospital at the age of 7 weeks. I wish someone had taken pictures of her in the NICU so we could add those to her memories.

 

She was very fragile immunity wise and for nearly 2 years we had to isolate ourselves - mostly because there were people who refused to keep distance when we asked. I even placed a large stop sign on her baby carrier at one point trying to get people to stay away. It said "Please, don't touch the baby." http://healthylittleones.com/OnTheGo.html Amazing how many people thought it would be ok to still do it though, especially strangers.

 

After we brought her home the fist year was tough. My daughter had 150 medical appointments that year. If my parents had not been helping then my son would not have been schooled. I also appreciated the gift cards at that time becuse they helped pay for gas and food on those many days out of the house. A wonderful friend would do some of my grocery shopping for me as I was exhausted - she stayed on every 3 hour feedings for nearly 6 months.

 

One thing I wish I had done though was find a friend who was willing to learn how to care and feed her in the beginning. My dd had swallowing dysphagia and had to be fed a certain way or she would aspirate. As dh and I were the only ones who knew how to do this, we NEVER were able to take a break without her.

 

We did use formula as dd was still failure to thrive and had difficulty gaining weight the first year. I did consider breast feeding, but I was so exhausted I decided not to go that extra mile. The formula was not cheap and it was very high calorie (like 32 calories per ounce). Our doctor finally wrote a prescription to the health department where we could get a large portion of the formula paid for that way. The hospital also applied for her to receive SSI when leaving due to the extra costs that were ahead.

 

Depending on how large her baby is, and what special needs may occur, clothing may be needed. I had a very hard time finding clothing small enough for dd that didn't cost a fortune.

[Zebra]

I loved it when people actually paid attention to the "please don't touch the baby, he is fragile! Please wait to come over till the baby is a little older. We don't want him to get sick." After we came home from the hospital.

 

 

I think it's wonderful that you are trying to understand what it is going to be like for this person.

 

My daughter was 9 weeks early, and we were both gravely ill. And I could not believe the people that came to the hospital bothering me while I was literally dying, and my daughter was in the NICU. The nurses finally banned any visitors and unplugged the phone, but it was insane for a few days. I think people should use common sense. My daughter was due in early September and was born in early July, it doesn't take a genius to figure out that something is wrong.

 

Also, the amount of people who sent me "congratulations" cards blew my mind. We were DYING, do not send flowers and cards to the hospital that say, "Congratulations...yay, happy dappy, you have a baby girl". Every time I got something, it was like I was punched in the stomach, because I literally did not know if either of us was going to live, and what complications there would be later. Do not pretend this is a happy and fine situation. It's not.

 

I had a weird experience because I was gravely ill for awhile afterwards, but still even if the mom does fine you are stressed and beside yourself for awhile. You feel like you failed your child, and you are holding your breath constantly, waiting for those milestones. Preemies get up all the time at night, they make horrible noises all night, they have all these problems and setbacks...and it's a terrible experience. I could not believe the way I had to fight with people. They would be offended if I didn't want the to touch the baby, or I made them wash their hands. Calling constantly, and trying to bring over meals even when the mom says she's all set...well, it's just stressful. And if you do bring a meal, make sure it's totally ready. I had one person DEMAND she was going to bring a meal(and I knew this person and knew how it was going to go down), then she dragged in a million things to my house, and started bossing my husband around to start helping her cook it. I wanted to cry. If the mom agrees to a meal, bring something completely prepared to drop off, or drop off a certificate to order pizza or something.

 

Also, let the person ignore you for awhile if they need to. People would drop by and call and demand updates, and I was doing all I could to stay alive at that point. All I really needed was peace and quiet, and time. Sometimes it's all you can do to survive a situation like this.

 

The people who helped me the most said, "Honestly and truly call me if you need ANYTHING, otherwise I won't bother you for awhile." were the best people. The people that backed off, but I knew I could call in a bind.

 

I get sweaty and upset even thinking about what we went through. Just understand the seriousness of the situation, and the fact that this person is not trying to upset you, they are just trying to get through it.

[Zebra]

 

I found some of our friends were reluctant to celebrate our babies birth until he came home. I really wished that they would have sent cards, flowers, gifts etc to celebrate with us.

 

 

 

This is so interesting to me, because I had the exact opposite reaction :lol:!!!

[SweetMissMagnolia]

my ds was born 8weeks early and ended up staying in NICU for about 25 days--we were soooo stressed out when he actually got to come home (he came home on a breathing monitor)-maybe meals that can go in the freezer....I know when my son was born it was hard to find preemie clothes-thank goodness now you can find them at WM and "local" places easier....

Edited March 2, 2012 by SweetMissMagnolia

[melissad2]

Agreeing with all that was said. Adding in money for snack/drink machines. It is a real roller coaster ride with lots of ups and downs. One thing that would have been nice that I didn't receive would be rides to and from the hospital. My babies were an hour away from me; I wasn't allowed to drive for a time; and dh couldn't take off that much time from work. (I just drove anyway.) Offers to keep other kids if she has them would also be invaluable. Basically, offer to do things that will keep her home-life going while they are spending a lot of time at the hospital.

 

Oh, that's good...a couple of rolls of quarters and some $1 bills would probably be awesome!

[Dancer_Mom]

I think the single best thing you can do for your friend is to get her on the phone / in person / whatever works best in her situation right now and ask her what she REALLY needs.

 

People do react differently to these types of situations and so many very well meaning people are going to try to "help." However help in this scenario means something different to each person.

 

My babies came VERY suddenly at 25 weeks. I had people calling me all day long, telling me things like, "oh well - at least you don't have to get up at night when you go home." (People really just didn't know what to say sometimes). I spent the whole day on my back after my C section calling our insurance, my principal to tell him I would need a substitute for longer etc.

 

Finally at the end of the first day after their birth a good friend from church called. She said, "I have heard from church everything that is going on and everything that people want to do for you. However... what do YOU need right now? What can I do for you right now that will actually help you." I started crying on the spot which I hadn't really done yet. Just to know that she understood that no one really knew how I was feeling and so it would be best to ask me directly what would help most.

 

Anyways - just my two cents... all of the other advice is great too. I agree about the bfeeding being the biggest thing at first since the baby will be 32 or 33 weeks already. She'll need to stand her ground immediately on that issue in the NICU (if she is planning on it). We did NO bottles at all. The babies had feeding tubes for feedings when I wasn't there until the last few days when I lived at the hospital and breastfed around the clock before they both came home.

 

Baby A - started trying to b'feed at 34ish weeks but didn't get the hang of it till very close to her due date. Baby B started trying to b'feed right around his due date and had no problems at all. My experience is the same as others that it usually takes till close to their due date - but no one told me this either.

 

I hope everything goes well for your friend... it will be a hard time.

[MeganW]

32 weeks and 3 pounds are the magic points past which the risk of long-term problems drops dramatically. 34 weeks and 4 pounds and the baby will likely not have any short-term or long-term problems, and may even go home with the mom after delivery.

 

DON'T say "well, I knew someone who had a preemie (born at 36w6d), and they were just fine, so your baby will be too!". I heard that ALL THE TIME, and it was just so frustrating. Technically, a preemie is any baby before 37 weeks, but the vast majority of babies born past 34 are typical, and shouldn't be compared to those born pre-34 weeks.

 

Babies born before 32 weeks are NOT allowed to be out in public their first winter. We were completely quarantined. Yes, that includes friends, family, church members, etc. A cold so minor that you don't even notice it can cause RSV in a preemie, which is OFTEN fatal, and if not, can cause lifetime lung problems. So don't be offended when your friend only allows you to meet the baby by looking through the back glass patio door. If she asks you to scrub down before touching the baby, don't tell her a story about how you took your baby and passed him around to everyone you encountered. It isn't helpful!

 

If the baby is covered in machines, don't act horrified! It's still a baby, and it hurts to have people only react to the medical equipment. Instead, comment about the beautiful eyes or how strong his grasp looks!

 

This is my favorite preemie book - it states the facts without being overly frightening or blindly optomistic.

 

http://www.amazon.com/Preemies-Essential-Parents-Premature-Babies/dp/067103491X

 

Your friend should also be aware of medical staff personalities and how they impact her understanding of her baby's condition. I overreacted several times to a nurse who was just in general a down sort of person, and several times I didn't understand how serious a situation was after talking to an upbeat nurse.

 

Everyday, she should ask two questions:

 

- what are your goals for this child for the next few days? (it may be lowering the oxygen the baby requires, it may be increasing feed amounts from x to y, etc.) Without knowing the goals, you WILL miss progress!

 

- on a scale of 1 to 10, with 1 being "this baby is not going to survive the next 24 hours", and 10 being "this baby will be going home in the next 24 hours", how would you rate this child's health?

[LMA]

My fifth was born 7 weeks early at 3 lb., 13 oz. in July. He spent two weeks in the NICU and that was only because I had to go back in to the hospital due to problems from my c-section.

 

1. What I needed was for someone to take me to the NICU and stay with me and take me home. I could only go at most an hour or two a day because I couldn't drive for 4 weeks and some days I couldn't go because I couldn't get a ride. My husband could take leave but my kids had all their summer camps and he had to take them to their camps and activities. I was not worried about leaving the baby alone because the care in the NICU is great, but I just wanted to spend time with the baby.

 

2. No matter how she chooses to feed the baby, please support her choice. Please don't criticize her choice. I got criticisms about not nursing and I got criticisms about the baby being on formula for premature babies, even though that is what the doctor ordered. I got told he shouldn't be on that premature stuff at all. Well, he has to be on it until he is over a year old and that's by the doctor's order. I don't know why everyone says the nurses are pro-formula; these nurses were very supportive of the choice you make. However, the nurses had to make sure that the baby is gaining the weight.

 

3. If the doctor wants the baby on premature formula, please tell her to call her insurance company about paying for the formula. My insurance company pays for the premature formula and I only found out about it because a friend told me to check. She may have to do a mail-order each month.

 

4. Every premature baby is different. It is so different from comparing healthy full term babies. Two babies born at 33 weeks could have totally different problems or one could have no problems and the other could have several problems.

 

5. I'm adding this: Encourage the husband to help with the baby. When my husband was in the NICU with me, he fed the baby and held the baby. The NICU in my hospital is really nice - separate rooms with a pull out couch and a privacy curtain for sleeping, so I would sleep on the couch and my husband would take care of everything. I was quite sick from my c-section and it was hard to push myself. Our first was a preemie who did not go into the NICU, so we knew what to expect, but having the husband help with everything was wonderful.

 

Best to your friend. We'll be praying that things go smoothly.

Edited March 1, 2012 by LMA

[forty-two]

Ds wasn't a preemie, but had health issues, so he was in for a week. Things that were hard:

 

*Feeding myself. I didn't like to leave the room, and the hospital food was expensive anyway (b/w dh and I we spent $500 on food for a week's stay :glare:). My main meal was whatever dh brought up each day, breakfast was provided, and the rest was catch-as-catch-can. Mom sent up some favorite foods that kept, and that was very helpful. I was nursing, and at least for me, in the initial stages, I'm *starving*, I have to eat all the time, and b/w stress and all, getting out to get food myself just didn't happen much (honestly, self-care in general didn't happen much).

 

*Living in a hospital room (that's not yours) while having just given birth. This actually wasn't too bad for me, as I had the easiest recovery ever, but for many, many women, sitting on hard chairs, sleeping squished in a chair, communal restrooms, would be extra rough after giving birth.

 

*Dh drove up every day, and while it was stressful for him, I really appreciated having some company. I'm a total introvert, and being alone is nice, but when under stress worrying about baby and medical procedures and all, having someone to give hugs and support was nice. Definitely ask first, though.

 

*Helping keep up the house and such - my mom watched our dds, and I know she was getting worn thin by the end.

 

:grouphug:

[bpskowski]

Some great replies here. I saw it mentioned, I think only once, if she can get a tour of the NICU where her baby is to be born before, that would be helpful. It is such an emotional shock just walking in there the first time. Get it over with before you do it the first time for your own baby.

 

Get/rent a good quality breast pump (if she plans on nursing). My hospital practically made me pump (I planned on nursing anyway), they wanted the colostrum for the babies. Check the hospitals situation out prior to birth. My hospital was very pro nursing. They had private rooms with pumps and gave me sterilized bottles for pumping at home. The had freezers specifically for storing pumped milk.

 

Have freezer meals at home and/or gift certificates for take out meals for both during the time she's traveling back and forth to the hospital and the time after the baby is first home. You are just exhausted and spend all you time and taking care and feeding the baby.

 

If she has other kids, arrange for someone to take care of them so she is able to go to the hospital as often and as long as she'd like.

 

After all the time spent in NICU, it would have been such a blessing to have someone clean the home before bringing the baby home.

 

Also, once the baby home, it would be great to have someone do your shopping.

 

But, like another poster mentioned ask her what she needs.

[MeganW]

This is not immediate NICU advice. It's for later. Don't compare her premature infant's developmental progress to that of any other infant you've met. I have three all born prematurely. Not one of them followed evenan adjusted schedule. My oldest was due three weeks before my niece. I hated talking to my sister because she was always telling me what new milestone her baby had reached. And my baby was on a completely different timeline.

 

Definitely!! I got so frustrated when my mom would ask "are they walking yet?" over and over and over! I kept telling her, "no, but they are only 8 months adjusted - typical kids often don't walk this early, and mine have some challenges - they aren't going to walk anytime soon!". And then the next time we talked, she would ask again.

[Amber in AUS]

Definitely!! I got so frustrated when my mom would ask "are they walking yet?" over and over and over! I kept telling her, "no, but they are only 8 months adjusted - typical kids often don't walk this early, and mine have some challenges - they aren't going to walk anytime soon!". And then the next time we talked, she would ask again.

 

I totally agree with this. Possum is 17m has 4 teeth and isn't walking yet. I don't need to be continually reminded of that. He will get there in his own time, that's a good preemie mantra.

[GoVanGogh]

Definitely!! I got so frustrated when my mom would ask "are they walking yet?" over and over and over! I kept telling her, "no, but they are only 8 months adjusted - typical kids often don't walk this early, and mine have some challenges - they aren't going to walk anytime soon!". And then the next time we talked, she would ask again.

:iagree:

I started to post this earlier, then deleted it...

But I would get so annoyed at my father. He would call daily to see if DS was eating yet, as that was the only thing keeping DS in the hospital by this point. Dad would say, "But I've never heard of a baby not wanting to eat, especially not a (our last name) baby! Our family puts out chunky babies that are begging to eat!" I finally quit taking his phone calls because I couldn't put up with it.

DS was later dx with an oral aversion. He was probably 6-years-old before he really *asked* for food. I remember one time when he was probably five and I could tell he needed to eat and he wouldn't. We actually had to put food in his mouth, then he would chew and swallow. But my MIL freaked out about it, like we were going to make him obese because we were putting food in his mouth. (She lived across the country, so had no idea what we were dealing with.)

 

Speaking of MIL:

1.) Don't wince when you see the baby or see photos of the baby. :glare:

2.) Don't tell the family they need to hide the photos b/c it is too awful for the child to see. (It is his birth story/medical history - they need to know!)

3.) Don't try to give advice, b/c dealing with a preemie is a totally different story.

Not that anyone other than MILs would do those things. :lol: Just felt the sudden need to get that off my chest.

 

When our preemie was in the hospital, we had so many people bring us food. We kept telling them we didn't need food; we were not home to eat it. Still. We ended up w/so much food, most of which got thrown out. The best thing anyone gave me was several loafs of quick bread, already sliced and packaged into small amounts. I put them in the freezer, then grabbed a slice or two on the way out the door to the hospital every day.

Gift cards for restaurants around the hospital would have been nice.

After DS was released from hospital, we were quarantined through cold/flu season. It would have been nice if people brought meals then or dropped by with some groceries, but I think most people thought we were on with our life by that time.

[Natalieclare]

I have been away from the computer today, so sorry I haven't responded to each of you. Thank you so much for everyone who has contributed.

 

Right now, I am recovering from either RSV or influenza, not sure which, so I know there is no way I can be of much help until I am better. It's killing me not to be at the hospital! Right now, our friend is in the hospital on bedrest; the doctor wants to eke out every minute he can with that baby on the inside. I know she has been receiving that stuff for the development of the baby's lungs. (I'm obviously not the medical brain in this family. My husband is actually going to be the pediatrician for the little girl.)

 

I think she is getting really good care and her baby will continue to get good care. In fact, my littlest guy was in the NICU for 5 days in the very same hospital, though not for prematurity. The nurses were great, the breastfeeding support was fabulous. But, the chairs!!!!! The poster who suggested a footrest was right on the money. I'll be sending that down to the hospital tomorrow (in preparation.) I'd forgotten how my feet swelled up.

 

I hadn't realized the need for transport to visit the baby. That is a need we can easily fill, between my 2 teen daughters and I.

 

And thanks for the book recs. I really wanted something I can put in her hands.

 

Whew! It must feel so good for you mothers to be on the other side of the long haul. I thought 5 days felt like an eternity at the time, but really, it was nothing but a whirlwind. 2 months is going to be an altogether different proposition.