Calling out to all premature baby/NICU experts
February 8, 2012 4:25 PM Subscribe
Help my wife and I navigate NICU and all that having a premature baby involves.
My wife was 25 weeks pregnant when she lost most of her amniotic fluid. For 5 days she was in the hospital not moving and on antibiotics, undergoing tests etc and on the evening of the 5th day our little baby boy was born, at 820grams. He was moving a lot and tried to make small crying noises. He was whisked immediately to the Neonatal Intensive Care Unit where he remains now.
Since then (a week ago) he has improved drastically... he is off his ventilator, so breathing independently, he is active in between long rest periods, is eating 1 ml of mothers milk every 3 hours. We began kangaroo care yesterday - amazing to see the difference it makes.
All this has thrust an intimidating new world of parenthood on us. There was no FAQ, no pamphlet, or anything at the hospital to explain what might happen, what we should ask etc. The doctors and nurses are great for the most part, and though things have settled a bit I would love some NICU survival tips and tricks, links to resources or anything anyone would think is useful.
Thanks very much!
My wife was 25 weeks pregnant when she lost most of her amniotic fluid. For 5 days she was in the hospital not moving and on antibiotics, undergoing tests etc and on the evening of the 5th day our little baby boy was born, at 820grams. He was moving a lot and tried to make small crying noises. He was whisked immediately to the Neonatal Intensive Care Unit where he remains now.
Since then (a week ago) he has improved drastically... he is off his ventilator, so breathing independently, he is active in between long rest periods, is eating 1 ml of mothers milk every 3 hours. We began kangaroo care yesterday - amazing to see the difference it makes.
All this has thrust an intimidating new world of parenthood on us. There was no FAQ, no pamphlet, or anything at the hospital to explain what might happen, what we should ask etc. The doctors and nurses are great for the most part, and though things have settled a bit I would love some NICU survival tips and tricks, links to resources or anything anyone would think is useful.
Thanks very much!
A good friend of mine works with Graham's Foundation, they do amazing work and should have great resources available to you.
posted by kpht at 4:57 PM on February 8, 2012
posted by kpht at 4:57 PM on February 8, 2012
This can be a tough time of mixed grief and joy - I hope it's okay to offer my congratulations on the birth of your baby and my wishes of good luck to you and your family in managing this period of your lives.
I'm not a parent but I know of some resources. Austprem is what it sounds like - internet forums for Aus/NZ parents of premature babies. Prematurity.org is a family-run website of very longstanding, and it's got a whole swack of links to coping with the NICU.
posted by gingerest at 4:58 PM on February 8, 2012
I'm not a parent but I know of some resources. Austprem is what it sounds like - internet forums for Aus/NZ parents of premature babies. Prematurity.org is a family-run website of very longstanding, and it's got a whole swack of links to coping with the NICU.
posted by gingerest at 4:58 PM on February 8, 2012
I work in a hospital and I think a lot of people overestimate the importance of the doctor an underestimate the importance if the nurse. If you find a nurse that you have a good gut feeling about, make that person your best friend.
Also, most medical mistakes happen at transitions of care (like shift change). If something doesn't feel quite right it probably isn't and you should never have any fear of questioning a health care provider.
posted by selfmedicating at 5:03 PM on February 8, 2012 [7 favorites]
Also, most medical mistakes happen at transitions of care (like shift change). If something doesn't feel quite right it probably isn't and you should never have any fear of questioning a health care provider.
posted by selfmedicating at 5:03 PM on February 8, 2012 [7 favorites]
Our child was in the NICU for a week, but based on our limited experience...
- The nurses are the key to happiness. Be kind to them and they'll be kind to you.
- How far do you live from the hospital? How often can you go?
- Don't forget to eat.
posted by k8t at 5:05 PM on February 8, 2012 [1 favorite]
- The nurses are the key to happiness. Be kind to them and they'll be kind to you.
- How far do you live from the hospital? How often can you go?
- Don't forget to eat.
posted by k8t at 5:05 PM on February 8, 2012 [1 favorite]
Here's an excellent blog post from Julie at A Little Pregnant.
posted by peep at 5:09 PM on February 8, 2012 [2 favorites]
posted by peep at 5:09 PM on February 8, 2012 [2 favorites]
Oh congratulations! Welcome to the world little Admira.
It's hard. So hard. The prem baby charity here in the UK has bus billboards saying 'A premature baby turns your life upside down' and good lord that's right. You were preparing for a baby in 15 weeks time, not now! You still have stuff to do! Well you have to do it now.
Austprem looks like a good website. Here is their page for resources such as clothes etc. Such a tiny baby will need super tiny clothes with open sides to allow for the tubes and monitors. Look around yourself for the forums and such. The NICU will also have a parents' group you can go to, and they should have a counsellor and chaplain you can talk to should you wish.
For you and your wife, get ready to spend a lot of long days at the hospital. There will be a parent's room with sofas, a tv and a fridge - this may or may not be well-stocked depending on the hospital. Ask the counsellor about meal vouchers for the hospital canteen if it's not. Also parking - here in the UK parents park for free, and people on low incomes get their public transport fares reimbursed. Find out what's available for you.
You will get to know the other babies and parents reasonably well - with a baby that tiny you're going to be there for six weeks or more. If there is an expressing room your wife will get to know the other mothers very well while they pump. You will also get to know the nurses very well - bring them chocolates occasionally, they like that. Find out when the doctor's rounds are so you can be there to ask questions about your son's care.
I read to my baby for hours at a time, so she would learn my voice. We read Alice in Wonderland, Beowulf, The Little Prince, whatever novel I was reading at the time. When she was in the humidicrib and I couldn't hold her I opened the armholes and read into them. Holding the baby is actually scarier though, or it was for me, initially - all those tubes! You WILL get used to it though, and learn how to hold him and even play with him safely, even with a longline in his head.
Your wife will most likely have to room in with your son before he is allowed home. This sucks, please be there as much as you can because she will be going mental, particularly if it's longer than a few days and she isn't allowed to leave the ward.
Good luck! I wish you, your wife and your son the very best medical science has to offer! Please memail me if you need to chat.
posted by goo at 5:12 PM on February 8, 2012 [7 favorites]
It's hard. So hard. The prem baby charity here in the UK has bus billboards saying 'A premature baby turns your life upside down' and good lord that's right. You were preparing for a baby in 15 weeks time, not now! You still have stuff to do! Well you have to do it now.
Austprem looks like a good website. Here is their page for resources such as clothes etc. Such a tiny baby will need super tiny clothes with open sides to allow for the tubes and monitors. Look around yourself for the forums and such. The NICU will also have a parents' group you can go to, and they should have a counsellor and chaplain you can talk to should you wish.
For you and your wife, get ready to spend a lot of long days at the hospital. There will be a parent's room with sofas, a tv and a fridge - this may or may not be well-stocked depending on the hospital. Ask the counsellor about meal vouchers for the hospital canteen if it's not. Also parking - here in the UK parents park for free, and people on low incomes get their public transport fares reimbursed. Find out what's available for you.
You will get to know the other babies and parents reasonably well - with a baby that tiny you're going to be there for six weeks or more. If there is an expressing room your wife will get to know the other mothers very well while they pump. You will also get to know the nurses very well - bring them chocolates occasionally, they like that. Find out when the doctor's rounds are so you can be there to ask questions about your son's care.
I read to my baby for hours at a time, so she would learn my voice. We read Alice in Wonderland, Beowulf, The Little Prince, whatever novel I was reading at the time. When she was in the humidicrib and I couldn't hold her I opened the armholes and read into them. Holding the baby is actually scarier though, or it was for me, initially - all those tubes! You WILL get used to it though, and learn how to hold him and even play with him safely, even with a longline in his head.
Your wife will most likely have to room in with your son before he is allowed home. This sucks, please be there as much as you can because she will be going mental, particularly if it's longer than a few days and she isn't allowed to leave the ward.
Good luck! I wish you, your wife and your son the very best medical science has to offer! Please memail me if you need to chat.
posted by goo at 5:12 PM on February 8, 2012 [7 favorites]
Response by poster: Thanks already, we are on our way to the hospital... worth noting we are in the Philippines not Australia.
posted by Admira at 5:40 PM on February 8, 2012 [1 favorite]
posted by Admira at 5:40 PM on February 8, 2012 [1 favorite]
Congratulations. I am sorry that you are going through this. It is not usually the kind of thing one would imagine would happen to them. I developed severe pre-eclampsia and delivered at 32 weeks--a tiny, nearly 4 lb baby who is now almost 4, and the biggest girl in her class. There is so much you are likely going through. I see you're in Australia, and I am in the US, but I am sure there are similarities in our experience.
The biggest thing that helped me, as a mom, was my husband's unconditional support. I pumped because our baby couldn't suck and therefore could not breastfeed. Well, husband was there, waking up with me every 3 hours to wash out my pump parts, so I could try and rest. It was amazing. He would drive the pumped milk out to the hospital when I was too tired to go. He really stepped up. It was fantastic.
I loved going to see my little girl. I was terrified the first time I got to change her diaper. She was so... Tiny. Like a baby bird, when you can feel their bones through their feathers. It was hard for me to believe a human could be so tiny. But it was fun to go watch her, sing to her, just hold her and feel connected to her.
We had excellent nurses. I felt entirely free to participate in her care, even the hard parts, like starting a new IV. There were some times that we couldn't visit, like during shift change or during a new admit, but we could call any time. I got to know the doctors well too, and never was anything but happy and satisfied with the care. Don't be afraid to speak up and ask questions if you don't understand what is going on. Things don't always make sense to newbies in NICU.
It is ok to skip a visit if you are not feeling up to it. It takes a toll, all that traveling, eating away from home...
You will probably need to go to the doctor a LOT the first year of life. Besides the normal pediatrician visits, we had pulmonologist visits for anti-RSV shots every 4 weeks for about 4 months. I know of others who needed gastroenterologist visits. I ended up staying home with her for about 9 months, after I had planned only 3 months. Be flexible, because it all changes with a preemie.
I know of some preemie parents who feel badly or guilty over the fact that their baby was early. I am a half-full kind of gal, so I was just thrilled my baby came! I had a very supportive family as well. Seek out support and ask for help--and accept it when it is offered.
My girl was in NICU for four weeks before we got to bring her home. I feel like it is all a distant, good memory. I hope you can keep up a good attitude. Yes, it is scary, new and different.... But, you can do it. One day at a time is all it takes. I wish you and your wife the best with your new little one. And feel free to PM me if you have any follow up questions.
posted by FergieBelle at 5:57 PM on February 8, 2012
The biggest thing that helped me, as a mom, was my husband's unconditional support. I pumped because our baby couldn't suck and therefore could not breastfeed. Well, husband was there, waking up with me every 3 hours to wash out my pump parts, so I could try and rest. It was amazing. He would drive the pumped milk out to the hospital when I was too tired to go. He really stepped up. It was fantastic.
I loved going to see my little girl. I was terrified the first time I got to change her diaper. She was so... Tiny. Like a baby bird, when you can feel their bones through their feathers. It was hard for me to believe a human could be so tiny. But it was fun to go watch her, sing to her, just hold her and feel connected to her.
We had excellent nurses. I felt entirely free to participate in her care, even the hard parts, like starting a new IV. There were some times that we couldn't visit, like during shift change or during a new admit, but we could call any time. I got to know the doctors well too, and never was anything but happy and satisfied with the care. Don't be afraid to speak up and ask questions if you don't understand what is going on. Things don't always make sense to newbies in NICU.
It is ok to skip a visit if you are not feeling up to it. It takes a toll, all that traveling, eating away from home...
You will probably need to go to the doctor a LOT the first year of life. Besides the normal pediatrician visits, we had pulmonologist visits for anti-RSV shots every 4 weeks for about 4 months. I know of others who needed gastroenterologist visits. I ended up staying home with her for about 9 months, after I had planned only 3 months. Be flexible, because it all changes with a preemie.
I know of some preemie parents who feel badly or guilty over the fact that their baby was early. I am a half-full kind of gal, so I was just thrilled my baby came! I had a very supportive family as well. Seek out support and ask for help--and accept it when it is offered.
My girl was in NICU for four weeks before we got to bring her home. I feel like it is all a distant, good memory. I hope you can keep up a good attitude. Yes, it is scary, new and different.... But, you can do it. One day at a time is all it takes. I wish you and your wife the best with your new little one. And feel free to PM me if you have any follow up questions.
posted by FergieBelle at 5:57 PM on February 8, 2012
I forgot to say - get as much sleep as you can now! Sleep!
On preview, sorry, your profile says you are in Australia. I can't find any support resources for the Philippines with a quick google. Please feel free to memail me.
posted by goo at 6:00 PM on February 8, 2012
On preview, sorry, your profile says you are in Australia. I can't find any support resources for the Philippines with a quick google. Please feel free to memail me.
posted by goo at 6:00 PM on February 8, 2012
And that raises a whole other set of issues - do you and/or your wife speak Tagalog? Are you having to deal with translation as well as the regular stress of a prem baby? Please make sure you are getting some time for yourselves and sleeping enough. Seriously, sleep!
posted by goo at 6:21 PM on February 8, 2012
posted by goo at 6:21 PM on February 8, 2012
My pumpkin was born at 26 weeks and was in the NICU for 2 months (thank you University of Maryland Medical Center!). The social worker will be a great source of info for you both about what happens in the hospital and what happens/what's available to you in your community once you go home.
Find out if there is a massage therapist that works or volunteers in the NICU. He/she can teach you infant massage. That happened for us about 2 weeks in and it changed everything.
Take care of each other and yourselves. This is a crisis just like any other and it can make things go sideways in unexpected ways. Get lots of rest and keep the "oxygen mask" metaphor in mind (you can't help anyone else until your own needs are met).
My pumpkin turned 18 last weekend!
posted by headnsouth at 6:56 PM on February 8, 2012
Find out if there is a massage therapist that works or volunteers in the NICU. He/she can teach you infant massage. That happened for us about 2 weeks in and it changed everything.
Take care of each other and yourselves. This is a crisis just like any other and it can make things go sideways in unexpected ways. Get lots of rest and keep the "oxygen mask" metaphor in mind (you can't help anyone else until your own needs are met).
My pumpkin turned 18 last weekend!
posted by headnsouth at 6:56 PM on February 8, 2012
Response by poster: Hi all, thank you so much for your answers and kind words... I haven't updated my profile yet but I'l get onto that. So far no problems with the staff, the level of English is not a problem. Though the medical care seems to be of the highest standard, there's been no counselling or social worker or anything like that, maybe that will come later.
We are lucky though in that we can afford to have someone help with cleaning and cooking to make life a bit easier for us.
posted by Admira at 7:27 PM on February 8, 2012
We are lucky though in that we can afford to have someone help with cleaning and cooking to make life a bit easier for us.
posted by Admira at 7:27 PM on February 8, 2012
My friend, a funny woman and great writer, negotiated this a couple years ago. She's in SF, but would probably be happy to chat. Memail me and I'll hook you up.
posted by cyndigo at 8:24 PM on February 8, 2012
posted by cyndigo at 8:24 PM on February 8, 2012
We had friends with a baby in the NICU, and we organized food for them (with a group of friends) so they could maximize their time there with their baby. Sounds like you have someone on hand to help with that. They found great support not only from the nurses, but from other parents of babies in the NICU, who knew exactly what they were going through.
posted by gingerbeer at 8:26 PM on February 8, 2012
posted by gingerbeer at 8:26 PM on February 8, 2012
50 days in the NICU after PPROM at 20 weeks, we made it to 30 weeks, and she's been home for about a month now. First off - if your wife is at all grieving over her pregnancy or blaming herself, the PROM stories at http://www.inkan.se/pprom/ were really helpful to me. I still wonder if I should have been on full bedrest earlier etc. etc., but overall realise it was mostly out of my control.
The book that I liked the most is The Preemie Primer: http://www.preemieprimer.com/ - her blog is good reading too. She had triplets, with two surviving and she writes clearly on the medical and parenting issues.
The nurses are key. Get to know their names, be polite and friendly. They are the gatekeepers for your baby's care. 99% of the time they will be great. I had one tell me I couldn't nurse my baby too much and ended up in a whispered argument with her that was written up, and she wasn't placed with my baby again.
Half-Baked is a fantastic memoir that really resonated with me. She swears a bit, and parts are very sad, but it was really good for me to read similar experiences.
I got a bunch of neonatal medical textbooks so I could read up on the medical proceedures - the library and frankly bittorrent were helpful here. I read research papers and watched surgery videos and so when our daughter had surgery for her PDA, I felt like I had asked all the questions and could reassure myself this was a good decision.
Neonatal healthcare changes very rapidly - what was cutting edge 2-3 years ago may be totally standard now, and best practices vary widely. I was lucky to be at a teaching hospital with a level 3-4 NICU. We had several doctors making decisions about her care, and some were happy to explain and answer questions, others only wanted to tell us their decisions in Very Small Words. It's up to you, but I found it helpful to keep our own medical records (her weight gain, what proceedures she'd had, medications) on my iphone (TotalBaby is the app we used because you can backup and create your own notes and tracking) because some doctors wouldn't let us look at her medical file, some would.
Breastfeeding and pumping - does your wife have a great pump? the NICU stress and separation makes milk production tougher, so a great pump - I had to try different flange styles and worked through three brands to get one that worked - makes a big difference. Preprint the little labels for the milk bottles, I kept meaning to do that and would end up scrawling the labels all bleary-eyed at 3am.
We had a portable electric pump on batteries (cordless) that meant I could sit by the baby's crib and pump. I put off buying nursing bras and wish I had gotten them earlier for easier pumping too. Hotmilk (http://www.hotmilklingerie.com/) is the brand I found and love for comfort.
Another thing I wish I'd gotten earlier was a nursing cover, which is essentially a blanket with a neck loop attached. Mine has a little bit of plastic at the top so that it curves to easily look down and see the baby or pump.
I got a domperidone prescription early on to help with milk production. I think in the US there are problems getting it prescribed, although it's used everywhere else for nursing mothers. It has made a significant difference, and aside from a few bits of formula pre-domperidone, she's now fully breastfed. For term babies, I don't think it's as crucial, but with preemies, breastmilk is huge, especially in cutting the risk for NEC. But formula still beats nothing, and my baby was fine with a couple of formula feeds.
Ask about donor milk. Our NICU didn't allow it, and I was planning at one point to smuggle in donor milk and pass it off as mine if my milk didn't increase! A donor milk bank can be covered by insurance.
Kangaroo Care! It's *wonderful*. There is so much medical research backing it up. We aimed for KC for at least 70-90minutes a day, pushing to several hours if we could. The more you can, the better. Our baby's heartrate and breathing would just drop beautifully and she would sleep deeply for long periods, compared to being in her crib. Swaddling helped her sleep too.
We also found a comfortable chair next to her crib really really helped. For KC it was essential, but just being there for hours in a crappy plastic chair was painful. There was one comfortable chair in a waiting room that various parents would take to sit by the crib for nursing. Buy and bring in a comfy chair if you plan on doing KC for several hours.
All the research I could find pushed for long sleeping periods for preemies, with low lights and muffled sounds. Our NICU cycled lights, but it was still relatively noisy. We bought speakers and use to play low classical music or white noise for her, but not very consistently. On the bright side, we have a baby who can sleep through almost anything.
We decorated her crib a little. Everything had to be in plastic ziplocks so it could be cleaned frequently - no exposed soft toys for example - but it still helped to have an icon of her saint nearby, a tiny rabbit doll she'd been given, and then a few handdrawn black and white graphic cards for her to stare at. Some NICUs let you bring in your own clothes too. That helped emotionally.
We bought two board books in for her and read them repeatedly, and I also read Jane Austen to her - just to have something to do when she was too fragile to be handled much or intubated, as well as to get her used to our voices. If you're away a lot, you could tape your voices reading to him and ask the nurses to play it for him.
Preemie clothes are difficult to find - I was very lucky to have a friend pass me some. You can mail order them, and I would stock up about a dozen tiny onesies for when he comes home.
Take over the basic tasks if you can - ask to learn how to change his diaper, feed him by the NG tube, even if it's just holding the syringe - you feel more involved and ready for when he comes home.
Find out what the discharge criteria are, so you can see the end in sight. Ours was 35 weeks, taking a bottle or breastfeeding well, 1.9kg and stable breathing at room air.
Half our nurses were from the Philippines (We're in Singapore) so your nurses are bound to be really good!
We had a baptism at the hospital before she went into surgery, and the nurses and the priest were all very helpful. Emotionally, it was a big help for me.
Oh, and our baby got an MSRA diagnosis, so she was in isolation for a while, which was almost nice because she had her own room so we could visit more comfortably. She was fine, just a greater risk.
The handwashing regimes are vital. If your NICU allows visitors (Ours allowed siblings and grandparents only, which was good - the babies are very vulnerable to illnesses) make sure they wash their hands. We bought hand sanitiser, the same brand, and just got our kids used to using it at home as well. You will need to buy hand moisturiser though if you're going to be washing your hands 5-20 times a day, just plain unscented stuff.
I struggled with nursing initially and was too tired/intimidated to ask for help from the hospital's lactation consultant who had been kind of abrupt straight after delivery with me, so I turned to youtube. The San Diego Hospital series was helpful, and there are lots more videos showing how to latch on etc.
Our NICU didn't have a pain policy, and I found that tough - I was able to request that she be given a pacifier to suck on during her heel prick etc. Some places will allow some sugar drops, but it's not clear if they work. The pacifier definitely helped once she was extubated. We had trouble fitting it in when she was on the CPAP, so we bought several versions and experimented until we had one that could sort of wedge in around the tubes.
She hated her CPAP and would constantly fight it off. On KC, sometimes we were allowed to remove it as long as her breathing was stable, but the rest of the time, it had to be velcroed on and checked constantly because she would wriggle her head around to get it off. The CPAP placement is an art - some nurses are great at it, others just okay.
Take photographs. If you share them, brace yourself for odd comments. To non-NICU people, they're scary with all the tubes, while you just see the beautiful baby underneath. But later on, you'll want those photographs.
We set up a sort of schedule around work and our kids, so that as much as possible, one of us was at the NICU, one was at home/work. Having a sort of schedule really helped.
And sleep. Sleep as long as you can. Once he's home, you will have essentially a newborn who needs 2-3 night feeds and lots of newborn care, but to the outside world, you've already had this baby for months, and they're expecting him to act like a 3+ month baby.
PM me if you have any questions. It's a mix of wonderful (your baby!) and terrifying. It feels like forever, but suddenly you will be at the "Okay, so we're going to release him in two days, do you have a carseat?" point and that's a whole new freaky time.
posted by viggorlijah at 8:35 PM on February 8, 2012 [7 favorites]
The book that I liked the most is The Preemie Primer: http://www.preemieprimer.com/ - her blog is good reading too. She had triplets, with two surviving and she writes clearly on the medical and parenting issues.
The nurses are key. Get to know their names, be polite and friendly. They are the gatekeepers for your baby's care. 99% of the time they will be great. I had one tell me I couldn't nurse my baby too much and ended up in a whispered argument with her that was written up, and she wasn't placed with my baby again.
Half-Baked is a fantastic memoir that really resonated with me. She swears a bit, and parts are very sad, but it was really good for me to read similar experiences.
I got a bunch of neonatal medical textbooks so I could read up on the medical proceedures - the library and frankly bittorrent were helpful here. I read research papers and watched surgery videos and so when our daughter had surgery for her PDA, I felt like I had asked all the questions and could reassure myself this was a good decision.
Neonatal healthcare changes very rapidly - what was cutting edge 2-3 years ago may be totally standard now, and best practices vary widely. I was lucky to be at a teaching hospital with a level 3-4 NICU. We had several doctors making decisions about her care, and some were happy to explain and answer questions, others only wanted to tell us their decisions in Very Small Words. It's up to you, but I found it helpful to keep our own medical records (her weight gain, what proceedures she'd had, medications) on my iphone (TotalBaby is the app we used because you can backup and create your own notes and tracking) because some doctors wouldn't let us look at her medical file, some would.
Breastfeeding and pumping - does your wife have a great pump? the NICU stress and separation makes milk production tougher, so a great pump - I had to try different flange styles and worked through three brands to get one that worked - makes a big difference. Preprint the little labels for the milk bottles, I kept meaning to do that and would end up scrawling the labels all bleary-eyed at 3am.
We had a portable electric pump on batteries (cordless) that meant I could sit by the baby's crib and pump. I put off buying nursing bras and wish I had gotten them earlier for easier pumping too. Hotmilk (http://www.hotmilklingerie.com/) is the brand I found and love for comfort.
Another thing I wish I'd gotten earlier was a nursing cover, which is essentially a blanket with a neck loop attached. Mine has a little bit of plastic at the top so that it curves to easily look down and see the baby or pump.
I got a domperidone prescription early on to help with milk production. I think in the US there are problems getting it prescribed, although it's used everywhere else for nursing mothers. It has made a significant difference, and aside from a few bits of formula pre-domperidone, she's now fully breastfed. For term babies, I don't think it's as crucial, but with preemies, breastmilk is huge, especially in cutting the risk for NEC. But formula still beats nothing, and my baby was fine with a couple of formula feeds.
Ask about donor milk. Our NICU didn't allow it, and I was planning at one point to smuggle in donor milk and pass it off as mine if my milk didn't increase! A donor milk bank can be covered by insurance.
Kangaroo Care! It's *wonderful*. There is so much medical research backing it up. We aimed for KC for at least 70-90minutes a day, pushing to several hours if we could. The more you can, the better. Our baby's heartrate and breathing would just drop beautifully and she would sleep deeply for long periods, compared to being in her crib. Swaddling helped her sleep too.
We also found a comfortable chair next to her crib really really helped. For KC it was essential, but just being there for hours in a crappy plastic chair was painful. There was one comfortable chair in a waiting room that various parents would take to sit by the crib for nursing. Buy and bring in a comfy chair if you plan on doing KC for several hours.
All the research I could find pushed for long sleeping periods for preemies, with low lights and muffled sounds. Our NICU cycled lights, but it was still relatively noisy. We bought speakers and use to play low classical music or white noise for her, but not very consistently. On the bright side, we have a baby who can sleep through almost anything.
We decorated her crib a little. Everything had to be in plastic ziplocks so it could be cleaned frequently - no exposed soft toys for example - but it still helped to have an icon of her saint nearby, a tiny rabbit doll she'd been given, and then a few handdrawn black and white graphic cards for her to stare at. Some NICUs let you bring in your own clothes too. That helped emotionally.
We bought two board books in for her and read them repeatedly, and I also read Jane Austen to her - just to have something to do when she was too fragile to be handled much or intubated, as well as to get her used to our voices. If you're away a lot, you could tape your voices reading to him and ask the nurses to play it for him.
Preemie clothes are difficult to find - I was very lucky to have a friend pass me some. You can mail order them, and I would stock up about a dozen tiny onesies for when he comes home.
Take over the basic tasks if you can - ask to learn how to change his diaper, feed him by the NG tube, even if it's just holding the syringe - you feel more involved and ready for when he comes home.
Find out what the discharge criteria are, so you can see the end in sight. Ours was 35 weeks, taking a bottle or breastfeeding well, 1.9kg and stable breathing at room air.
Half our nurses were from the Philippines (We're in Singapore) so your nurses are bound to be really good!
We had a baptism at the hospital before she went into surgery, and the nurses and the priest were all very helpful. Emotionally, it was a big help for me.
Oh, and our baby got an MSRA diagnosis, so she was in isolation for a while, which was almost nice because she had her own room so we could visit more comfortably. She was fine, just a greater risk.
The handwashing regimes are vital. If your NICU allows visitors (Ours allowed siblings and grandparents only, which was good - the babies are very vulnerable to illnesses) make sure they wash their hands. We bought hand sanitiser, the same brand, and just got our kids used to using it at home as well. You will need to buy hand moisturiser though if you're going to be washing your hands 5-20 times a day, just plain unscented stuff.
I struggled with nursing initially and was too tired/intimidated to ask for help from the hospital's lactation consultant who had been kind of abrupt straight after delivery with me, so I turned to youtube. The San Diego Hospital series was helpful, and there are lots more videos showing how to latch on etc.
Our NICU didn't have a pain policy, and I found that tough - I was able to request that she be given a pacifier to suck on during her heel prick etc. Some places will allow some sugar drops, but it's not clear if they work. The pacifier definitely helped once she was extubated. We had trouble fitting it in when she was on the CPAP, so we bought several versions and experimented until we had one that could sort of wedge in around the tubes.
She hated her CPAP and would constantly fight it off. On KC, sometimes we were allowed to remove it as long as her breathing was stable, but the rest of the time, it had to be velcroed on and checked constantly because she would wriggle her head around to get it off. The CPAP placement is an art - some nurses are great at it, others just okay.
Take photographs. If you share them, brace yourself for odd comments. To non-NICU people, they're scary with all the tubes, while you just see the beautiful baby underneath. But later on, you'll want those photographs.
We set up a sort of schedule around work and our kids, so that as much as possible, one of us was at the NICU, one was at home/work. Having a sort of schedule really helped.
And sleep. Sleep as long as you can. Once he's home, you will have essentially a newborn who needs 2-3 night feeds and lots of newborn care, but to the outside world, you've already had this baby for months, and they're expecting him to act like a 3+ month baby.
PM me if you have any questions. It's a mix of wonderful (your baby!) and terrifying. It feels like forever, but suddenly you will be at the "Okay, so we're going to release him in two days, do you have a carseat?" point and that's a whole new freaky time.
posted by viggorlijah at 8:35 PM on February 8, 2012 [7 favorites]
I had a mantra for myself: "Calm Mommy, Happy Visit."
posted by daisystomper at 10:19 PM on February 8, 2012 [1 favorite]
posted by daisystomper at 10:19 PM on February 8, 2012 [1 favorite]
Very best of luck to you both...Here are my tips:
bring some books and read to your baby- that way he can hear the sound of your voice and it gives you something else to focus on.
There are usually lockers in a nicu- try not to bring in germ laden valuables so always keep a padlock in your bag.
Don't be deterred from talking or singing, I got some funny looks at first but i'm glad she got used to my (terrible) voice.
When you come to pick her up you will get the monitor cables and tubes tangled...don't worry you get the hang of it soon enough. Similarly when your baby cries you'll have a nurse coming over to check everything's ok...doesn't mean you're doing it wrong.
Make sure you eat regularly, go out for meals and generally spoil yourselves. Insist on your partner taking breaks and eating properly. Don't feel guilty when you're not there- baby needs to see two happy confident parents. Similarly there's no shame in stepping out if you need a cry...at the birth I stayed calm for 2 days before sobbing like a baby as soon as my partner was asleep!
Finally remember it gets better...6 months from now your beautiful baby is going to be chirping, laughing and crawling and this will all be a dream!
Good luck :)
posted by welovelife at 2:01 AM on February 9, 2012 [1 favorite]
bring some books and read to your baby- that way he can hear the sound of your voice and it gives you something else to focus on.
There are usually lockers in a nicu- try not to bring in germ laden valuables so always keep a padlock in your bag.
Don't be deterred from talking or singing, I got some funny looks at first but i'm glad she got used to my (terrible) voice.
When you come to pick her up you will get the monitor cables and tubes tangled...don't worry you get the hang of it soon enough. Similarly when your baby cries you'll have a nurse coming over to check everything's ok...doesn't mean you're doing it wrong.
Make sure you eat regularly, go out for meals and generally spoil yourselves. Insist on your partner taking breaks and eating properly. Don't feel guilty when you're not there- baby needs to see two happy confident parents. Similarly there's no shame in stepping out if you need a cry...at the birth I stayed calm for 2 days before sobbing like a baby as soon as my partner was asleep!
Finally remember it gets better...6 months from now your beautiful baby is going to be chirping, laughing and crawling and this will all be a dream!
Good luck :)
posted by welovelife at 2:01 AM on February 9, 2012 [1 favorite]
Response by poster: Whoa ... firstly I want to give a big thanks to everyone who has answered and given their personal stories. we are just back from the hospital now.
Pumping... its a problem. The hospital has a huge Medela Symphony machine that works really well for my wife. So she can pump at the hospital no problems. We bought a pigeon on recommendation from a doctor that was ... terrible really. So I got a medela swing and we are trying it as I type!
Nurses and doctors names.. I have to admit everything has been such a blur that nothing has really sunk in, but today my wife and I both agreed we need to be much better at that.
posted by Admira at 6:36 AM on February 9, 2012
Pumping... its a problem. The hospital has a huge Medela Symphony machine that works really well for my wife. So she can pump at the hospital no problems. We bought a pigeon on recommendation from a doctor that was ... terrible really. So I got a medela swing and we are trying it as I type!
Nurses and doctors names.. I have to admit everything has been such a blur that nothing has really sunk in, but today my wife and I both agreed we need to be much better at that.
posted by Admira at 6:36 AM on February 9, 2012
Yeah the hospital-grade pumps are awesome. I used one at work. Took ~10 minutes to pump.
At home I used a Medela Pump-In-Style - it used the same hookups. It wasn't AS good, but it was fine. Took ~20 minutes to pump.
Not sure about where you are, but you can certainly rent a Symphony in the U.S. ... might want to look into it.
posted by k8t at 7:06 AM on February 9, 2012 [1 favorite]
At home I used a Medela Pump-In-Style - it used the same hookups. It wasn't AS good, but it was fine. Took ~20 minutes to pump.
Not sure about where you are, but you can certainly rent a Symphony in the U.S. ... might want to look into it.
posted by k8t at 7:06 AM on February 9, 2012 [1 favorite]
I had a notebook that went with us to the hospital every time. I'd copy down stats like her weight, temp, bilirubin levels (she had jaundice for the longest time) and general observations. I also pumped in the room with her every chance I got and timed my visits so that I could feed her--even when she was still getting tube feeds. I wanted to be there.
At home I rented a hospital grade pump. I would do some serious mind's eye work and would imagine going to the hospital to see her, even down to parking my car in the lot, walking in the front door, going up the elevator, being buzzed in, washing up, etc. I would also tell myself "This is the best for my baby," and other mantras like this. I really think that this made a big difference in my production. If I was stressed out or worried, or my mind wasn't on pumping, I couldn't produce as much. It really is a mental thing as much as physical.
It's important to have the right size flanges for pumping as well as extra parts at home. Flanges that are too small will not let all of the milk out, and production begets production. It's also tough when you accidentially fry your tubes on a Sunday morning when you're trying to sterlize them and there are no medical supply/pharmacy/baby supply shops open. I actually learned the most about pumping from a NICU nurse who herself had a preemie.
Our NICU was really quiet. I didn't socialize with the other parents, probably because we all had private rooms. There wasn't an opportunity to. It's OK if you don't want to. You can get support from all kinds of people.
posted by FergieBelle at 7:52 AM on February 9, 2012
At home I rented a hospital grade pump. I would do some serious mind's eye work and would imagine going to the hospital to see her, even down to parking my car in the lot, walking in the front door, going up the elevator, being buzzed in, washing up, etc. I would also tell myself "This is the best for my baby," and other mantras like this. I really think that this made a big difference in my production. If I was stressed out or worried, or my mind wasn't on pumping, I couldn't produce as much. It really is a mental thing as much as physical.
It's important to have the right size flanges for pumping as well as extra parts at home. Flanges that are too small will not let all of the milk out, and production begets production. It's also tough when you accidentially fry your tubes on a Sunday morning when you're trying to sterlize them and there are no medical supply/pharmacy/baby supply shops open. I actually learned the most about pumping from a NICU nurse who herself had a preemie.
Our NICU was really quiet. I didn't socialize with the other parents, probably because we all had private rooms. There wasn't an opportunity to. It's OK if you don't want to. You can get support from all kinds of people.
posted by FergieBelle at 7:52 AM on February 9, 2012
The nurses are really key, and they want to know you, I've found. They want to see their tiny patients as part of a family, and will go out of their way to involve you as much as possible. As exhausted as you are, try to form some sort of relationship with your baby's usual caregivers. You will have a familar group of nurses to relate with, and they are more likely to offer all sorts of advice and information unsolicited if they get to know you. Cookies and candy are less important than offering human communication, though treats are always welcome.
The experience of nursing changed altogether when I discovered a double-barrel pumping adapter for the hospital breast pump, to pump both breasts simultaneously. It cut pumping to about 8 minutes flat. This also helped increase production, cause my little one, when she was able to nurse, would slack off after one side and never emptied the second breast completely. Good luck to your newly expanded family!
posted by citygirl at 8:06 AM on February 9, 2012
The experience of nursing changed altogether when I discovered a double-barrel pumping adapter for the hospital breast pump, to pump both breasts simultaneously. It cut pumping to about 8 minutes flat. This also helped increase production, cause my little one, when she was able to nurse, would slack off after one side and never emptied the second breast completely. Good luck to your newly expanded family!
posted by citygirl at 8:06 AM on February 9, 2012
It gets better.
My first born was less than 2 pounds and stayed at the NICU for 3 months.
1. Get one of those baby wearing thingies. It does wonders, because it's like kangaroo therapy but you can literally do it all day long. The baby feels the mother or father's heartbeat, warmth, proximity and it really REALLY helps to make up for the time apart, and it helps the baby but it helped in my case, the mother more. It gave me my sanity back. I wore my baby from the first day he was discharged, and until he got too heavy... House chores, long walks, errands... also, to calm him down it was a total balm.
2. Pump a lot in the hospital with the super-pumps and pump less at home. During kangaroo therapy, let the baby suckle. It stimulates the milk production, even if the baby isn't really drinking much.
3.Something I wish someone had told me: having a premature baby is stressful and extremely taxing on your psyche. It took me 8 months of antidepressants to get better. I just wish I had started earlier on.
4. here's a link to a photoalbum of my son that I made for his 2nd birthday (3 years ago). I wish someone had shown me something like this when I was at the hospital not knowing if my baby was going to be fine.
posted by buck:fuller at 11:36 AM on February 9, 2012
My first born was less than 2 pounds and stayed at the NICU for 3 months.
1. Get one of those baby wearing thingies. It does wonders, because it's like kangaroo therapy but you can literally do it all day long. The baby feels the mother or father's heartbeat, warmth, proximity and it really REALLY helps to make up for the time apart, and it helps the baby but it helped in my case, the mother more. It gave me my sanity back. I wore my baby from the first day he was discharged, and until he got too heavy... House chores, long walks, errands... also, to calm him down it was a total balm.
2. Pump a lot in the hospital with the super-pumps and pump less at home. During kangaroo therapy, let the baby suckle. It stimulates the milk production, even if the baby isn't really drinking much.
3.Something I wish someone had told me: having a premature baby is stressful and extremely taxing on your psyche. It took me 8 months of antidepressants to get better. I just wish I had started earlier on.
4. here's a link to a photoalbum of my son that I made for his 2nd birthday (3 years ago). I wish someone had shown me something like this when I was at the hospital not knowing if my baby was going to be fine.
posted by buck:fuller at 11:36 AM on February 9, 2012
To add non-practical tips, for what I wish I'd known:
There will be problems. Our mantra was "a boring baby is a good baby" and we had in hindsight a fairly smooth 50 days, but every step back - the medication didn't work, her urine output is down, the MRSA diagnosis etc - felt like a body blow. It really helps to accept upfront that there will be delays and problems, and not let the good news turn into "everything's fine now!"
I did not want to hear about other people's healthy term babies. I was glad for them, but it was too painful. I had moments of being jealous of the 35-36 weekers, the babies who come into the NICU for a few days and go home. I preferred not to socialise after the baby in the crib next to our daughter died. We didn't do more than exchange hellos and nods with the parents, but just witnessing their devastation, and seeing their child, who we had watched as well, struggle - it was too hard. I just wanted to cocoon down with my child, but this is very much individual.
The weirdest thing was everyone telling us stories about a friend or a neighbour who'd had a preemie and now he's 6ft tall and at university, etc. The stories weren't helpful at all. The research is pretty clear: preemies are generally shorter and will struggle at school. The earlier they're born, the more likely they will have issues. I felt like people were trying to reassure us that there would be no damage, even though clearly there would be, because the reality of preemies was too harsh for them to handle. It made them feel better, not us. And some people may say how hard this is for them and expect you to comfort them - seriously! I just stared blankly at them until they left.
What I did love to hear was from other parents of preemies, and most of all from the surprising number of my friends who were preemies and are now thriving adults. I wanted to hear from people directly involved, not doctors or friends-of.
If you have other kids, bringing them in for very short visits is really helpful for them to bond with the new baby. It is boring for them after five minutes if they can't hold the baby yet.
And it is stressful. It's all the stress of a new baby squared. Be very very kind to yourself and your wife, don't expect to keep up with work or other responsibilities. Tell people you can't do it right now. Turn down everything else until later.
Also, the offers of help - ask people to wait until you're home with the baby (who will be the corrected age of a newborn then, although on paper 2-3 months old), and then do the cooking and cleaning and visiting.
I got really sick of the hospital cafeteria food at the end. Other parents in the NICU had grandparents bringing in home-cooked meals for them which was really lovely.
posted by viggorlijah at 7:25 PM on February 9, 2012 [2 favorites]
There will be problems. Our mantra was "a boring baby is a good baby" and we had in hindsight a fairly smooth 50 days, but every step back - the medication didn't work, her urine output is down, the MRSA diagnosis etc - felt like a body blow. It really helps to accept upfront that there will be delays and problems, and not let the good news turn into "everything's fine now!"
I did not want to hear about other people's healthy term babies. I was glad for them, but it was too painful. I had moments of being jealous of the 35-36 weekers, the babies who come into the NICU for a few days and go home. I preferred not to socialise after the baby in the crib next to our daughter died. We didn't do more than exchange hellos and nods with the parents, but just witnessing their devastation, and seeing their child, who we had watched as well, struggle - it was too hard. I just wanted to cocoon down with my child, but this is very much individual.
The weirdest thing was everyone telling us stories about a friend or a neighbour who'd had a preemie and now he's 6ft tall and at university, etc. The stories weren't helpful at all. The research is pretty clear: preemies are generally shorter and will struggle at school. The earlier they're born, the more likely they will have issues. I felt like people were trying to reassure us that there would be no damage, even though clearly there would be, because the reality of preemies was too harsh for them to handle. It made them feel better, not us. And some people may say how hard this is for them and expect you to comfort them - seriously! I just stared blankly at them until they left.
What I did love to hear was from other parents of preemies, and most of all from the surprising number of my friends who were preemies and are now thriving adults. I wanted to hear from people directly involved, not doctors or friends-of.
If you have other kids, bringing them in for very short visits is really helpful for them to bond with the new baby. It is boring for them after five minutes if they can't hold the baby yet.
And it is stressful. It's all the stress of a new baby squared. Be very very kind to yourself and your wife, don't expect to keep up with work or other responsibilities. Tell people you can't do it right now. Turn down everything else until later.
Also, the offers of help - ask people to wait until you're home with the baby (who will be the corrected age of a newborn then, although on paper 2-3 months old), and then do the cooking and cleaning and visiting.
I got really sick of the hospital cafeteria food at the end. Other parents in the NICU had grandparents bringing in home-cooked meals for them which was really lovely.
posted by viggorlijah at 7:25 PM on February 9, 2012 [2 favorites]
You know.. I just wanted to add from a Dad's point of view - my son was 10wks early and he spent the first 30d in the NICU. He's almost 9 now. Parenthood has no manual, but we all make our way through it. Premie babies are, in general, not like people seem to think - give him a few months, and you won't even know it by looking at him.. buy more 0-3 than premie clothes.. he'll outgrow them sooner than you think... and take care of your wife.. mine suffered severe post partem and blamed herself for the birth being so early. I was so caught up in the new addition that I think I missed a lot of it, and 8 yrs later, it still bothers me and her... make sure she's OK - you know?
And congrats!! It's a hell of a ride, you will feel like you are the worst parent and the best parent in the world all in the span of a few mins almost every day... but so do the rest of us!
posted by niteHawk at 11:48 PM on February 9, 2012
And congrats!! It's a hell of a ride, you will feel like you are the worst parent and the best parent in the world all in the span of a few mins almost every day... but so do the rest of us!
posted by niteHawk at 11:48 PM on February 9, 2012
what niteHawk said.
posted by buck:fuller at 10:55 AM on February 10, 2012
posted by buck:fuller at 10:55 AM on February 10, 2012
Response by poster: Just want to say we are still in the NICU, its been a hell of a ride and we've learnt a lot. But light is at the end of the tunnel, and though theres lot of things still to face as a consequence, I feel like we are well armed. I want to thank everyone who has posted or MefiMailed me. I reread the answers here and really got a lot of value from some of them.
posted by Admira at 5:13 AM on April 28, 2012 [1 favorite]
posted by Admira at 5:13 AM on April 28, 2012 [1 favorite]
Hi Admira, I'm so glad your son is coming home, that is a huge step. Having the nurses and doctors be responsible for your tiny baby's care, but now *you are* is a big step, and I hope you have the support available to you in the Philippines that you should. Good luck, and memail if you need to.
posted by goo at 6:30 PM on May 1, 2012
posted by goo at 6:30 PM on May 1, 2012
This thread is closed to new comments.
posted by PorcineWithMe at 4:56 PM on February 8, 2012 [1 favorite]