What will it be like having a baby in the NICU for several weeks?
September 27, 2015 4:58 PM Subscribe
Due to some pregnancy complications, it's looking very likely that our baby will be born by c-section at around 32 weeks, and at least 3 weeks small for gestational age. We're anticipating a NICU stay of many weeks. I have a few questions for those who have been there to help me visualise what this time will be like.
If you were in a similar situation, what did your daily/weekly routine look like? Did you spend all day every day with your baby? What did you do to keep yourself busy while sitting around at the hospital?
Did you and your partner go to the hospital at the same time, or take shifts so that the baby was alone for less time? Did your partner take leave when the baby was born, or save it until the baby came home?
Did friends and family come and visit the baby in hospital, or were people not really sure how to approach the whole situation so stayed away?
Thanks in advance.
If you were in a similar situation, what did your daily/weekly routine look like? Did you spend all day every day with your baby? What did you do to keep yourself busy while sitting around at the hospital?
Did you and your partner go to the hospital at the same time, or take shifts so that the baby was alone for less time? Did your partner take leave when the baby was born, or save it until the baby came home?
Did friends and family come and visit the baby in hospital, or were people not really sure how to approach the whole situation so stayed away?
Thanks in advance.
My daughter was born at 26 weeks, very unexpectedly, in a town about three hours from home. We went through several variations of our day-to-day:
First we were both on leave and spent 4-6 hours/day in the NICU. Our NICU had individual rooms, a comfy couch/pull out bed and free wifi. Baby was in an incubator at this point and skin-to-skin time was very limited. Family came to visit (from 3000 miles away) at this time because no one was sure if baby was going to make it.
Then we both tried going back to work, me at home three hours away and him teleworking in the NICU (free wifi). This was a disaster as his work was unhappy and I couldn't stand being so far away.
Then I went back on leave and spent Tuesday-Thursday in the NICU about 10-11 hours/day, Friday at home/traveling, Sat/Sun we were both in the NICU, Monday at home/traveling back and forth. We spent the nights in the hospital's charity hotel (similar to Ronald McDonald house). This worked well enough. Time spent in the NICU was mostly browsing the web/watching netflix while baby slept on my chest. On the weekend it was Daddy's turn. I credit the massive amount of 'kangaroo care' for her eventual thriving (probably wishful thinking).
We spent 104 days in the NICU and I wouldn't wish it on anyone. That said, a 32-weeker is very different from my 26-weeker. You'll get through it.
NICUs vary in layout ('baby barn' vs. individual rooms) and comfort of staff with parents basically moving in. You don't need to be there 24/7 but babies need lots of cuddles and staff have other responsibilities. Do what you can and don't beat yourself up over what you can't do. Being a NICU parent is incredibly frustrating and heart breaking but it will be over and there will be times after you come home when you will long to hand your baby off to an experienced nurse and get an uninterrupted night's sleep.
Whatever works for you and your family is A-OK.
posted by arrmatie at 5:17 PM on September 27, 2015 [4 favorites]
First we were both on leave and spent 4-6 hours/day in the NICU. Our NICU had individual rooms, a comfy couch/pull out bed and free wifi. Baby was in an incubator at this point and skin-to-skin time was very limited. Family came to visit (from 3000 miles away) at this time because no one was sure if baby was going to make it.
Then we both tried going back to work, me at home three hours away and him teleworking in the NICU (free wifi). This was a disaster as his work was unhappy and I couldn't stand being so far away.
Then I went back on leave and spent Tuesday-Thursday in the NICU about 10-11 hours/day, Friday at home/traveling, Sat/Sun we were both in the NICU, Monday at home/traveling back and forth. We spent the nights in the hospital's charity hotel (similar to Ronald McDonald house). This worked well enough. Time spent in the NICU was mostly browsing the web/watching netflix while baby slept on my chest. On the weekend it was Daddy's turn. I credit the massive amount of 'kangaroo care' for her eventual thriving (probably wishful thinking).
We spent 104 days in the NICU and I wouldn't wish it on anyone. That said, a 32-weeker is very different from my 26-weeker. You'll get through it.
NICUs vary in layout ('baby barn' vs. individual rooms) and comfort of staff with parents basically moving in. You don't need to be there 24/7 but babies need lots of cuddles and staff have other responsibilities. Do what you can and don't beat yourself up over what you can't do. Being a NICU parent is incredibly frustrating and heart breaking but it will be over and there will be times after you come home when you will long to hand your baby off to an experienced nurse and get an uninterrupted night's sleep.
Whatever works for you and your family is A-OK.
posted by arrmatie at 5:17 PM on September 27, 2015 [4 favorites]
You do the best you can to balance work and other responsibilities and trust that your baby is in good hands with the care he/she's getting and Don't. Feel. Guilty. when you're not there.
My extended family came, including my niece and nephew who were 5-8 at the time. Whatever works for your family is fine.
And find out who at the hospital can teach you infant massage. Every negative/guilty/impotent feeling I had related to the circumstances of my baby's birth disappeared when I was introduced to therapeutic touch. It absolutely transformed the experience for both of us from clinical to nurturing.
The NICU is an amazing place. Your baby will never be in better hands than he/she is in with NICU nurses. Best wishes to all.
posted by headnsouth at 5:19 PM on September 27, 2015 [1 favorite]
My extended family came, including my niece and nephew who were 5-8 at the time. Whatever works for your family is fine.
And find out who at the hospital can teach you infant massage. Every negative/guilty/impotent feeling I had related to the circumstances of my baby's birth disappeared when I was introduced to therapeutic touch. It absolutely transformed the experience for both of us from clinical to nurturing.
The NICU is an amazing place. Your baby will never be in better hands than he/she is in with NICU nurses. Best wishes to all.
posted by headnsouth at 5:19 PM on September 27, 2015 [1 favorite]
I forgot to add that I spent approximately a million hours pumping breastmilk. By the time we were discharged I'd filled a chest freezer (which was very helpful when I went back to work).
posted by arrmatie at 5:25 PM on September 27, 2015 [3 favorites]
posted by arrmatie at 5:25 PM on September 27, 2015 [3 favorites]
Sorry, one more post because you can never see enough NICU success stories
posted by arrmatie at 5:34 PM on September 27, 2015 [1 favorite]
posted by arrmatie at 5:34 PM on September 27, 2015 [1 favorite]
I had a 25-weeker (1 lb, 5 oz) who was in the NICU for a little over 19 weeks. She just turned three and is a spitfire, tiny but ahead of her actual age in every category except gross motor skills, where she is about a year behind. She's been medically complex her whole life but we are slowly shedding all the specialists. I mention this because, while a 32-weeker is likely to come home with few ongoing medical problems, it's possible. We've dealt with home oxygen, apnea monitors, and a long-term feeding tube - all things that terrified me, but which have now become second nature. I have no medical training and am a squeamish person, so I want to assure you that whatever gets thrown your way, you can do this.
In our case, we have a world class childrens hospital about 15 minutes away from us, so we were able to spend a lot of time there. Once I was discharged from the hospital myself, I spent around 6 hours a day, working up to ten or more hours a day. I used up all of my paid disability leave (eight weeks) before I went back to work. My husband went back to work the day after she was born, I think. He came every evening and we had dinner at Ronald McDonald House or the hospital cafeteria, then we went home around 8. Once I went back to work, we both went in the evening and spent most of the day on weekends there. Looking back, it was probably too much - the baby was fine in the care of the nurses, there wasn't much I could do, and at times I really exhausted myself. On the other hand, what was I going to do, sit home and play video games while my baby was on life support? It's a tough balance.
I spent most of my time at the bedside either kangarooing or reading the many books on prematurity that were available from the Family Resource Center at our hospital. I read some books for pleasure as well, which is a good coping mechanism for me. It would have been a good time to take up knitting/crochet/cross-stitch or listen to podcasts or audiobooks. I participated in "cares", which is when the nurses care for the baby, usually every three hours: diaper, temperature, repositioning, feeding (tube or bottle/breast attempt), etc. We gave her a bath most days after a certain point. We brought in preemie clothes and dressed her every day once she was big enough and stable enough. I took pictures every day. I talked with every person who came into her room, asking them every question I could think of.
We did have visitors from early on. I found that most people only came once. Our baby was really tiny and kind of terrifying to look at for a long time, and I don't think most people knew how to handle it (I still have never shared early pictures of her with pretty much anyone). My mother-in-law came probably once a week, and another friend came somewhat frequently as well. No one was allowed to hold her or even touch her until her due date, except for us (this was our rule, not the doctors', but it's good for infection control). Most people were generally very kind and thoughtful, even if they didn't know what to do.
When my daughter came home from the hospital, my husband took two weeks paternity leave, and he also took one day off a week for another eight weeks since we had so many doctor's appointments and she had so much equipment to take with us everywhere. I had tried to quit my job, which generously gave me an additional six months unpaid leave starting when my daughter was discharged from the hospital. I ended up not going back to work at all.
I recommend the following books, if you're a researcher like me: The Preemie Parents’ Companion, Preemies, Newborn Intensive Care, Girl in Glass, and The Birth of a Mother (not specifically about prematurity, but it is covered in a really thoughtful way that is not covered elsewhere - basically, you are thrust into parenthood as prematurely as your baby is thrust into the world, and that deserves some exploration).
I will say that staying in a NICU longer than two weeks or so is actually a good thing, I think - you have the chance to develop a routine, for things to settle in and start to feel okay, to come to terms with what has happened to you, whereas parents who are there only for four days or so wind up shellshocked, having no time to process what has happened to them before it's over, and with little chance to explore all the resources the hospital has to offer. Since you have the time to anticipate what you might face, try to focus on this aspect of it - it's not how you imagined your parenting journey starting, but it's another way to do it. You will get a ton of support from some of the most amazing people in the world - many NICU nurses are moms themselves, and I pumped them for general parenting information in addition to specialized info, and it served me very well. Ask a lot of questions and you will be given a wealth of information that most parents never have access to.
Good luck to you, feel free to memail if you want to talk about it more. If you're on bedrest right now, I recommend Sidelines.org.
posted by peanut_mcgillicuty at 5:56 PM on September 27, 2015 [2 favorites]
In our case, we have a world class childrens hospital about 15 minutes away from us, so we were able to spend a lot of time there. Once I was discharged from the hospital myself, I spent around 6 hours a day, working up to ten or more hours a day. I used up all of my paid disability leave (eight weeks) before I went back to work. My husband went back to work the day after she was born, I think. He came every evening and we had dinner at Ronald McDonald House or the hospital cafeteria, then we went home around 8. Once I went back to work, we both went in the evening and spent most of the day on weekends there. Looking back, it was probably too much - the baby was fine in the care of the nurses, there wasn't much I could do, and at times I really exhausted myself. On the other hand, what was I going to do, sit home and play video games while my baby was on life support? It's a tough balance.
I spent most of my time at the bedside either kangarooing or reading the many books on prematurity that were available from the Family Resource Center at our hospital. I read some books for pleasure as well, which is a good coping mechanism for me. It would have been a good time to take up knitting/crochet/cross-stitch or listen to podcasts or audiobooks. I participated in "cares", which is when the nurses care for the baby, usually every three hours: diaper, temperature, repositioning, feeding (tube or bottle/breast attempt), etc. We gave her a bath most days after a certain point. We brought in preemie clothes and dressed her every day once she was big enough and stable enough. I took pictures every day. I talked with every person who came into her room, asking them every question I could think of.
We did have visitors from early on. I found that most people only came once. Our baby was really tiny and kind of terrifying to look at for a long time, and I don't think most people knew how to handle it (I still have never shared early pictures of her with pretty much anyone). My mother-in-law came probably once a week, and another friend came somewhat frequently as well. No one was allowed to hold her or even touch her until her due date, except for us (this was our rule, not the doctors', but it's good for infection control). Most people were generally very kind and thoughtful, even if they didn't know what to do.
When my daughter came home from the hospital, my husband took two weeks paternity leave, and he also took one day off a week for another eight weeks since we had so many doctor's appointments and she had so much equipment to take with us everywhere. I had tried to quit my job, which generously gave me an additional six months unpaid leave starting when my daughter was discharged from the hospital. I ended up not going back to work at all.
I recommend the following books, if you're a researcher like me: The Preemie Parents’ Companion, Preemies, Newborn Intensive Care, Girl in Glass, and The Birth of a Mother (not specifically about prematurity, but it is covered in a really thoughtful way that is not covered elsewhere - basically, you are thrust into parenthood as prematurely as your baby is thrust into the world, and that deserves some exploration).
I will say that staying in a NICU longer than two weeks or so is actually a good thing, I think - you have the chance to develop a routine, for things to settle in and start to feel okay, to come to terms with what has happened to you, whereas parents who are there only for four days or so wind up shellshocked, having no time to process what has happened to them before it's over, and with little chance to explore all the resources the hospital has to offer. Since you have the time to anticipate what you might face, try to focus on this aspect of it - it's not how you imagined your parenting journey starting, but it's another way to do it. You will get a ton of support from some of the most amazing people in the world - many NICU nurses are moms themselves, and I pumped them for general parenting information in addition to specialized info, and it served me very well. Ask a lot of questions and you will be given a wealth of information that most parents never have access to.
Good luck to you, feel free to memail if you want to talk about it more. If you're on bedrest right now, I recommend Sidelines.org.
posted by peanut_mcgillicuty at 5:56 PM on September 27, 2015 [2 favorites]
peppermintfreddo: "Did you and your partner go to the hospital at the same time, or take shifts so that the baby was alone for less time? Did your partner take leave when the baby was born, or save it until the baby came home?
Did friends and family come and visit the baby in hospital, or were people not really sure how to approach the whole situation so stayed away?"
From close friends who went through it -- in general one partner took a couple weeks off, went back to work, and then took the rest of their leave when the baby came home. (But American leave is so crazy stingy.)
BASICALLY ALL of your friends and family will be DELIGHTED to come visit you in the NICU (unless they are themselves pregnant, in which case it might be too frightening) and do all the kangaroo care you wish to delegate upon them, but they will all wait to hear what you want them to do because absolutely nobody is willing to intrude on the complex emotional life of the NICU.
I would have gone LITERALLY EVERY DAY to sit with my friend's preemie so she could shower and relax and have lunch, but I did not want to intrude. As it ended up, I took her older child a couple times a week to play with my same-age older child so she could be at the hospital longer without worrying about her older child. Sitting and holding or watching a baby is literally the most pleasant possible emotional labor you can do for another person, especially in such a difficult situation -- do not be afraid to ask. But at the same time, people will not want to intrude on you without very explicit permission. Do not be afraid to ask for people to come and keep you company if you need company. Most of my friends who have been through this made a facebook group of close friends and/or designated a point person, and then asked for what help they needed -- hospital relief, hospital company, freezer meals, an errand helper, someone to carpool other kids, etc.
(My good friend's preemie is 4 and hitting all his milestones and was riding carnival rides with my 4-year-old this past weekend, and he was 26 weeks. She and I had the same "full term" due date.)
posted by Eyebrows McGee at 5:59 PM on September 27, 2015 [1 favorite]
Did friends and family come and visit the baby in hospital, or were people not really sure how to approach the whole situation so stayed away?"
From close friends who went through it -- in general one partner took a couple weeks off, went back to work, and then took the rest of their leave when the baby came home. (But American leave is so crazy stingy.)
BASICALLY ALL of your friends and family will be DELIGHTED to come visit you in the NICU (unless they are themselves pregnant, in which case it might be too frightening) and do all the kangaroo care you wish to delegate upon them, but they will all wait to hear what you want them to do because absolutely nobody is willing to intrude on the complex emotional life of the NICU.
I would have gone LITERALLY EVERY DAY to sit with my friend's preemie so she could shower and relax and have lunch, but I did not want to intrude. As it ended up, I took her older child a couple times a week to play with my same-age older child so she could be at the hospital longer without worrying about her older child. Sitting and holding or watching a baby is literally the most pleasant possible emotional labor you can do for another person, especially in such a difficult situation -- do not be afraid to ask. But at the same time, people will not want to intrude on you without very explicit permission. Do not be afraid to ask for people to come and keep you company if you need company. Most of my friends who have been through this made a facebook group of close friends and/or designated a point person, and then asked for what help they needed -- hospital relief, hospital company, freezer meals, an errand helper, someone to carpool other kids, etc.
(My good friend's preemie is 4 and hitting all his milestones and was riding carnival rides with my 4-year-old this past weekend, and he was 26 weeks. She and I had the same "full term" due date.)
posted by Eyebrows McGee at 5:59 PM on September 27, 2015 [1 favorite]
One more thing: be sure to shore up your relationship with your partner during the NICU stay. People process things differently, and there is a very high rate of marital discord following a NICU stay, and the divorce rate for this population is higher than average. Be kind to each other, and stay connected.
posted by peanut_mcgillicuty at 5:59 PM on September 27, 2015
posted by peanut_mcgillicuty at 5:59 PM on September 27, 2015
My son was born at 35 weeks and was in the NICU two weeks. I was fairly out of it from the delivery (preeclampsia); my mother came to stay with us and our routine was something like wake up, pump breast milk, go to the hospital for a couple hours; come home, lunch, pump, nap, pump, go to the hospital, get dinner, pump, go to bed. I wish I had spent somewhat more time at the hospital now, but on the other hand I don't think I didn't spend *enough* time there. It's really hard to say, there isn't a guideline (as far as I know) on how much time to spend with your preemie, especially when you are exhausted and depressed and terrified. We always went together and we did not have any NICU visitors other than my mother, but that was mostly because we had just moved to a new town and didn't really know too many people.
posted by daisystomper at 6:08 PM on September 27, 2015
posted by daisystomper at 6:08 PM on September 27, 2015
My kiddo was born at term, but we were in the NICU for ten days. My mom flew in to take care of my older child. My husband had to work. I went all day, during the day, largely so that I could nurse him when he was able to nurse. At home, at night, I took care of my big kid and pumped milk. The last few days, we were transferred to the main pediatric hospital for a variety of reasons, with a private room and a bed for me, so I just moved in. Friends stepped up to bring food -- both to me while I was at the hospital, and to my family at home. We didn't have a lot of hospital visitors, by choice -- my mom, my older son, my two best friends, and our midwife (who works at the hospital as well as doing homebirths; she would drop by when she was in the hospital).
A friend had her preemie in the NICU for a month+ last winter; that NICU has rooms for each patient, so mom just moved right in. Similarly to me, her mom flew into town and, along with her husband, took care of the two older kids. People came to visit; friends fed her and fed her family. She works for herself, so while she took a financial hit, she didn't have a boss to contend with.
posted by linettasky at 6:50 PM on September 27, 2015
A friend had her preemie in the NICU for a month+ last winter; that NICU has rooms for each patient, so mom just moved right in. Similarly to me, her mom flew into town and, along with her husband, took care of the two older kids. People came to visit; friends fed her and fed her family. She works for herself, so while she took a financial hit, she didn't have a boss to contend with.
posted by linettasky at 6:50 PM on September 27, 2015
My daughter spent about a week in the NICU. We spent nights there with her as for whatever reason I had more trouble leaving her at night than during the day. We slept in recliners in the room, and I woke every two hours to attempt breastfeeding, then pump and clean up (the nurse topped her off for me concurrently which was nice). I had trouble focusing on books or even messing around on my phone, so when I couldn't sleep I'd wander the hospital or chat with the nurses.
After morning rounds, we'd head home, shower and pass out, then up again and back at the hospital by 8pm or so.
My mom had come into town for the birth and stayed at our house the whole time, cleaning, taking care of the cat, and finalizing all the things I hadn't finished. This was a huge help. She and my SO's parents took turns visiting the hospital during the day/after work, so there were very few hours she went without someone near.
posted by marmago at 6:51 PM on September 27, 2015
After morning rounds, we'd head home, shower and pass out, then up again and back at the hospital by 8pm or so.
My mom had come into town for the birth and stayed at our house the whole time, cleaning, taking care of the cat, and finalizing all the things I hadn't finished. This was a huge help. She and my SO's parents took turns visiting the hospital during the day/after work, so there were very few hours she went without someone near.
posted by marmago at 6:51 PM on September 27, 2015
My children were born at 28 weeks and spent 8 weeks in the NICU. I went back to work right after they were born to preserve my leave until they came home.
I visited the NICU with my wife in the evenings. My wife usually visited in the mornings and afternoons for a couple hours at a time. She tried to time her morning visit to coincide with the doctors making their morning rounds. We live close to the hospital so multiple visits per day was easy.
Family went with us on the weekends but our NICU limited the number of visitors we could take in to two at a time. It was usually just my wife and I though.
The NICU is a strange place as there's a constant low level of stress with occasional bouts of high stress but there's usually nothing to do but stare at the babies until they're well enough for kangaroo care. One of my boys was on oxygen for the first 6 weeks and the other had surgery on his 2nd day. It was kind of a relief if nothing was actually happening in the NICU.
The NICU nurses (and the doctors) were very competent so it helped to know the babies were being well cared for.
Towards the end of the NICU stay at the end of one of their morning rounds, the doctor commented to my wife that "you had a very optimal outcome". I still think about that statement five years later.
posted by LoveHam at 7:17 PM on September 27, 2015 [1 favorite]
I visited the NICU with my wife in the evenings. My wife usually visited in the mornings and afternoons for a couple hours at a time. She tried to time her morning visit to coincide with the doctors making their morning rounds. We live close to the hospital so multiple visits per day was easy.
Family went with us on the weekends but our NICU limited the number of visitors we could take in to two at a time. It was usually just my wife and I though.
The NICU is a strange place as there's a constant low level of stress with occasional bouts of high stress but there's usually nothing to do but stare at the babies until they're well enough for kangaroo care. One of my boys was on oxygen for the first 6 weeks and the other had surgery on his 2nd day. It was kind of a relief if nothing was actually happening in the NICU.
The NICU nurses (and the doctors) were very competent so it helped to know the babies were being well cared for.
Towards the end of the NICU stay at the end of one of their morning rounds, the doctor commented to my wife that "you had a very optimal outcome". I still think about that statement five years later.
posted by LoveHam at 7:17 PM on September 27, 2015 [1 favorite]
Both of our sons were in NICU for the first couple of weeks. First son had a serious, nearly fatal infection and actually spent a month in the hospital. The second son was born a little too quickly (very quick labor) and had some fluid in his lungs.
Both boys are healthy and happy now.
With our first son, my wife actually stayed in the hospital with him, and the nurse taught her a bunch of stuff about breastfeeding, and she made friends with other mothers on the ward. This was in Obama, Japan.
With our second son he was in NICU for I think 3 days, and we made trips out to the hospital to see him (as far as I can remember). I think my wife might have stayed at the hospital for at least a night or two, but they kick you out as soon as possible.
I can't really say how to prepare for it, because new mothers obviously have a very different and more powerful experience than do new fathers.
All I can say is that in each instance the time passed quickly, even with our first son who nearly died, and was in the rearview mirror soon enough.
posted by Nevin at 7:19 PM on September 27, 2015
Both boys are healthy and happy now.
With our first son, my wife actually stayed in the hospital with him, and the nurse taught her a bunch of stuff about breastfeeding, and she made friends with other mothers on the ward. This was in Obama, Japan.
With our second son he was in NICU for I think 3 days, and we made trips out to the hospital to see him (as far as I can remember). I think my wife might have stayed at the hospital for at least a night or two, but they kick you out as soon as possible.
I can't really say how to prepare for it, because new mothers obviously have a very different and more powerful experience than do new fathers.
All I can say is that in each instance the time passed quickly, even with our first son who nearly died, and was in the rearview mirror soon enough.
posted by Nevin at 7:19 PM on September 27, 2015
My daughter was born at 32 weeks. The doctors told us when she was born we should expect to stay in the NICU until she was full-term, which seemed then (and seems now) like a totally reasonable ballpark estimate. We actually left the NICU after ten days. She'll turn ten years old in a month and is sitting next to me approving this message.
We were essentially both in the NICU as much as the folks at the hospital would permit us. They had a couple of hours a day when the NICU was emptied of visitors for the staff change. They also had a strictly enforced two-visitor rule: we could have both parents, or a parent and a guest, but we couldn't accumulate a crowd in the NICU. This worked out well for us in terms of giving us excuses to leave the baby and take care of ourselves. Some of our friends were able to be supportive and visit in the NICU, and some were weirded out and and didn't visit us until later.
The suckle reflex developed as scheduled at 34 weeks, so the first couple weeks of feeding were really a challenge.
We had the luxury of excellent family and work support and we were both able to take the leave that we needed.
My daughter who approves of this story commands me to take her upstairs and read her bedtime stories.
posted by fantabulous timewaster at 7:59 PM on September 27, 2015 [3 favorites]
We were essentially both in the NICU as much as the folks at the hospital would permit us. They had a couple of hours a day when the NICU was emptied of visitors for the staff change. They also had a strictly enforced two-visitor rule: we could have both parents, or a parent and a guest, but we couldn't accumulate a crowd in the NICU. This worked out well for us in terms of giving us excuses to leave the baby and take care of ourselves. Some of our friends were able to be supportive and visit in the NICU, and some were weirded out and and didn't visit us until later.
The suckle reflex developed as scheduled at 34 weeks, so the first couple weeks of feeding were really a challenge.
We had the luxury of excellent family and work support and we were both able to take the leave that we needed.
My daughter who approves of this story commands me to take her upstairs and read her bedtime stories.
posted by fantabulous timewaster at 7:59 PM on September 27, 2015 [3 favorites]
My daughter was born at 33&6 at the Royal Women's in Melbourne and spent four days in the NICU there before being transferred to Sunshine SCN for two weeks. My boyfriend and I decided that he would take his two weeks paternity leave after she came home and he didn't drive at the time, so the two and half weeks she was in special care it was pretty much all me except for weekends. The midwives were fantastic and the care we received through the public system exceptional. There is a lot of support available if you want to breastfeed (though it will be a while before your baby can suckle). The one thing I wish I knew beforehand was the importance of getting into a routine. I really wanted to be with my baby all the time and was spending 16 - 20 hours a day at the hospital, driving myself back and forth and continuing to pump every 3 hours when I was at home. I nearly had a breakdown from sheer exhaustion after one week of this and ended up getting into the following routine for the rest of her stay:
9am arrive at the hospital in time for her feed and change, pump once she went back to sleep then have something to eat/rest
12pm feed and change, then drive home for a rest
3pm pump
6pm arrive at the hospital for her feed and change, pump once she went back to sleep then have something to eat/rest
9pm feed and change, then drive home for a rest
12am pump
3am pump
6am pump
This routine allowed me to be the one who fed her for half of her feeds but also to get a least an hour “sleep” in every three hour block. I had a lot of guilt about not being there but looking back all my worries were misplaced and being in the SCN actually ended up being a big help as first time parents – we had NO IDEA about anything and no family support, so I really appreciated all the supervision and assistance I got from the midwives and was much more confident by the time I took her home. We had one night in a private room attached to the SCN with the midwives on call before she was released. My daughter was settled into the hospital routine of three hourly feed and changes which made it easier to continue the routine at home and she was a very easy baby who had caught up to her peers by the time she was eight months old.
posted by Wantok at 9:42 PM on September 27, 2015
9am arrive at the hospital in time for her feed and change, pump once she went back to sleep then have something to eat/rest
12pm feed and change, then drive home for a rest
3pm pump
6pm arrive at the hospital for her feed and change, pump once she went back to sleep then have something to eat/rest
9pm feed and change, then drive home for a rest
12am pump
3am pump
6am pump
This routine allowed me to be the one who fed her for half of her feeds but also to get a least an hour “sleep” in every three hour block. I had a lot of guilt about not being there but looking back all my worries were misplaced and being in the SCN actually ended up being a big help as first time parents – we had NO IDEA about anything and no family support, so I really appreciated all the supervision and assistance I got from the midwives and was much more confident by the time I took her home. We had one night in a private room attached to the SCN with the midwives on call before she was released. My daughter was settled into the hospital routine of three hourly feed and changes which made it easier to continue the routine at home and she was a very easy baby who had caught up to her peers by the time she was eight months old.
posted by Wantok at 9:42 PM on September 27, 2015
Different hospitals have different guidelines, and the NICU nurses will help you figure out the best schedule. If there's a parent support group, it can be helpful. You'll almost certainly get 1 or 2 regular baby nurses rather than a shift of nurses, so the cardinal rule of the NICU experience is: Be Good To Your Nurses. Almost all of them are really amazing nurses and have chosen to work in the NICU because they love the work and babies, and they have seen and helped many babies and families. We had 52 days in NICU, and just one bad hour with a nurse who was in hindsight pretty new to the ward and didn't understand the kangaroo-care protocol which was also pretty new (my kid had a bubble c-pap and was learning to nurse, so I had to juggle the c-pap and latching on, back and forth, and the nurse freaked out, and I asked for a new nurse to be assigned)
Take photos and video - video is so good, later on and you will treasure it. be very careful who you share those photos and videos with though. I didn't see the wires and cables after the first day, just my adorable baby, but she freaked out everyone who hadn't had an NICU baby, and I had some inadvertent cruel comments from people about her that were hard.
I read the same few books to her over and over, and those are still her favourite books to this day. It gave me something to do while holding her. Breastfeeding or donor milk and physically holding her (kangaroo care) are medically helpful things you can do. For the rest - recover yourself so you're rested up and healthy when your baby comes home, and trust the medical care. It's one of those weird medical fields were things change so rapidly - every year, the survival rates improve because they are still learning so much but it is very much an art as much as science. Every baby is a complicated challenge and the doctors and nurses can't give you clear firm answers because so much is still unknown. But a 32 week baby is now considered a 'regular' preemie, not a very early preemie.
I spent as much time at the hospital as I could, but I had work and children. My partner and I did shifts, and there wasn't much support otherwise. I was too exhausted, and in hindsight, in a terrible situation that blocked me from asking for help so I greatly appreciated the few people who ignored the blocking and came and helped anyway. What meant a lot was people who went and did the baby things shopping (too emotionally draining to go around baby shops looking for baby items because that meant thinking of the future and seeing happy pregnancies and healthy newborns) and people who made and brought meals to the hospital, people who delivered media like books and films to consume during boring hospital stays, and people who went out of their way to share stories of their NICU children in a reassuring way.
Avoid the people who want to turn your baby's NICU stay into their own drama about how hard it is for them and expect you to comfort them.
Oh and a tablet with several good games is a must for hospital stays. One you could play with your partner would be nice so you could keep in contact when you're apart and share baby stuff too. I also used I think Total Baby or some app like that to track baby meds and doctor notes and feeds and that was very helpful for the NICU stay, what with all the shifts and changes, being able to keep track of everything with a sleep deprived brain.
And congratulations on your baby - they will be much loved and lovely.
posted by dorothyisunderwood at 10:20 PM on September 27, 2015
Take photos and video - video is so good, later on and you will treasure it. be very careful who you share those photos and videos with though. I didn't see the wires and cables after the first day, just my adorable baby, but she freaked out everyone who hadn't had an NICU baby, and I had some inadvertent cruel comments from people about her that were hard.
I read the same few books to her over and over, and those are still her favourite books to this day. It gave me something to do while holding her. Breastfeeding or donor milk and physically holding her (kangaroo care) are medically helpful things you can do. For the rest - recover yourself so you're rested up and healthy when your baby comes home, and trust the medical care. It's one of those weird medical fields were things change so rapidly - every year, the survival rates improve because they are still learning so much but it is very much an art as much as science. Every baby is a complicated challenge and the doctors and nurses can't give you clear firm answers because so much is still unknown. But a 32 week baby is now considered a 'regular' preemie, not a very early preemie.
I spent as much time at the hospital as I could, but I had work and children. My partner and I did shifts, and there wasn't much support otherwise. I was too exhausted, and in hindsight, in a terrible situation that blocked me from asking for help so I greatly appreciated the few people who ignored the blocking and came and helped anyway. What meant a lot was people who went and did the baby things shopping (too emotionally draining to go around baby shops looking for baby items because that meant thinking of the future and seeing happy pregnancies and healthy newborns) and people who made and brought meals to the hospital, people who delivered media like books and films to consume during boring hospital stays, and people who went out of their way to share stories of their NICU children in a reassuring way.
Avoid the people who want to turn your baby's NICU stay into their own drama about how hard it is for them and expect you to comfort them.
Oh and a tablet with several good games is a must for hospital stays. One you could play with your partner would be nice so you could keep in contact when you're apart and share baby stuff too. I also used I think Total Baby or some app like that to track baby meds and doctor notes and feeds and that was very helpful for the NICU stay, what with all the shifts and changes, being able to keep track of everything with a sleep deprived brain.
And congratulations on your baby - they will be much loved and lovely.
posted by dorothyisunderwood at 10:20 PM on September 27, 2015
Also talk to a lactation counsellor ahead of the c-section. Nursing will be harder for a preemie delivery because you're not quite hormonally ready and the baby can't latch on till 34-36 weeks anyway. You will need to rent a hospital-grade pump, and you may need to explore donor milk banks. I had a pretty useless lactation counsellor and youtube was way more helpful, but YMMV I hope! You can take safe(ish) medications post-delivery to encourage milk production too.
posted by dorothyisunderwood at 10:22 PM on September 27, 2015
posted by dorothyisunderwood at 10:22 PM on September 27, 2015
Ours came at 25 weeks (just shy of two pounds) at the beginning of January and finally came home (healthy, happy, and hearty) at the beginning of April. My wife never went back to her job; I went on leave for a couple weeks after the delivery and then went back a slightly modified work schedule. I was already telecommuting two days a week, so I bumped that up to three, and then we settled into a routine of visiting five days a week; we'd skip the days that I had to go to the office, as doing the commute to and from there and then doing a second commute to and from the hospital was a very long day. After baby came home, I took a couple days off to nest and then went back to my regular work schedule.
We would stay about 3 or 4 hours a visit. We hung out by baby's bedside for most of it, and then we'd head off to a private room for my wife to pump. Later on we got to bring him with us to the room, which was nice. They would throw all the visitors out of the unit for an hour whenever they did a shift change, so that kind of limited how long we could stay in a stretch. Most of our time there was spent in the presence of the baby so we didn't really need to bring much in the way of entertainment/diversions. During pumping time we'd usually watch whatever we could get on the hospital television, because we were too mentally and physically (in my wife's case, literally) drained to do much else.
We usually went together, although a few times I had to drop my wife off, go run errands, and then come back later to visit the baby and pick her up. Each baby was limited to a maximum of two bedside visitors at a time, one of which needed to be a parent, so that kind of limited other visitors, but we were able to invite the grandparents and aunts and uncles on various days and shuttle them in to pay tribute.
The pumping was definitely the hardest part of the whole thing; having to wake up every 3 or 4 hours and fiddle with tubes and cups and bottles is not a fun time. If you intend to pump, I would recommend getting an appointment with a lactation consultant and getting fitted for a hands-free pumping bra ASAP; we didn't get around to this for about a month and once we finally did it made my wife's life worlds easier. If you can, buy enough sets of everything so that you only have to wash pump parts once a day. DO NOT let ANYONE stress you out or make you feel inadequate about your production; it's an easy thing to start beating yourself up over after hearing the same set of "helpful suggestions" from the 100th random nurse. I learned to shut those conversations down quickly with "Thanks, we're seeing a lactation consultant!"
You are going to want to designate a relative or trusted friend as your official communications officer for disseminating baby news and updates to your friends and family. Until we did this, our phones were pretty much blowing up at all hours from people sending their well wishes and asking for updates and pictures. They all meant well, but we weren't mentally capable of dealing with all that in addition to the other stuff and I kind of ended up having a tiny meltdown on Facebook over it. Don't be me. I also ended up taking work email off of my phone entirely during this time period (and still haven't put it back on) and would usually leave my phone in do-not-disturb mode with no notifications or ringing except from my wife or from the hospital. As much as possible, if there's something that isn't directly related to keeping you, your spouse, or the baby in good shape, blow it off and let someone else deal with it. You've got more important things going on.
Keeping ourselves properly fed while keeping up with the pumping and visit schedule was a major challenge. Stock up on lots of low-prep pre-portioned portable foodstuffs. If you are going to be pumping, you are going to be very hungry almost all the time. If people ask if there's anything they can do for you, tell them to make you a casserole, or even better, a bunch of sandwiches -- foods that you can eat one-handed are going to be particularly valuable. My siblings bought us some credit on a food delivery website, which was totally awesome. Another great thing people did for us from time to time was to drive us to and pick us up from the hospital; generally, if people wanted to come visit the baby, providing us with transportation to the hospital was the price of admission.
It was a rough three months and we were COMPLETELY unprepared but we got through it; you can too! Best wishes to your family and your new arrival; feel free to MeMail me if you have any other questions / need to vent at someone who's been through it.
posted by jordemort at 10:47 PM on September 27, 2015
We would stay about 3 or 4 hours a visit. We hung out by baby's bedside for most of it, and then we'd head off to a private room for my wife to pump. Later on we got to bring him with us to the room, which was nice. They would throw all the visitors out of the unit for an hour whenever they did a shift change, so that kind of limited how long we could stay in a stretch. Most of our time there was spent in the presence of the baby so we didn't really need to bring much in the way of entertainment/diversions. During pumping time we'd usually watch whatever we could get on the hospital television, because we were too mentally and physically (in my wife's case, literally) drained to do much else.
We usually went together, although a few times I had to drop my wife off, go run errands, and then come back later to visit the baby and pick her up. Each baby was limited to a maximum of two bedside visitors at a time, one of which needed to be a parent, so that kind of limited other visitors, but we were able to invite the grandparents and aunts and uncles on various days and shuttle them in to pay tribute.
The pumping was definitely the hardest part of the whole thing; having to wake up every 3 or 4 hours and fiddle with tubes and cups and bottles is not a fun time. If you intend to pump, I would recommend getting an appointment with a lactation consultant and getting fitted for a hands-free pumping bra ASAP; we didn't get around to this for about a month and once we finally did it made my wife's life worlds easier. If you can, buy enough sets of everything so that you only have to wash pump parts once a day. DO NOT let ANYONE stress you out or make you feel inadequate about your production; it's an easy thing to start beating yourself up over after hearing the same set of "helpful suggestions" from the 100th random nurse. I learned to shut those conversations down quickly with "Thanks, we're seeing a lactation consultant!"
You are going to want to designate a relative or trusted friend as your official communications officer for disseminating baby news and updates to your friends and family. Until we did this, our phones were pretty much blowing up at all hours from people sending their well wishes and asking for updates and pictures. They all meant well, but we weren't mentally capable of dealing with all that in addition to the other stuff and I kind of ended up having a tiny meltdown on Facebook over it. Don't be me. I also ended up taking work email off of my phone entirely during this time period (and still haven't put it back on) and would usually leave my phone in do-not-disturb mode with no notifications or ringing except from my wife or from the hospital. As much as possible, if there's something that isn't directly related to keeping you, your spouse, or the baby in good shape, blow it off and let someone else deal with it. You've got more important things going on.
Keeping ourselves properly fed while keeping up with the pumping and visit schedule was a major challenge. Stock up on lots of low-prep pre-portioned portable foodstuffs. If you are going to be pumping, you are going to be very hungry almost all the time. If people ask if there's anything they can do for you, tell them to make you a casserole, or even better, a bunch of sandwiches -- foods that you can eat one-handed are going to be particularly valuable. My siblings bought us some credit on a food delivery website, which was totally awesome. Another great thing people did for us from time to time was to drive us to and pick us up from the hospital; generally, if people wanted to come visit the baby, providing us with transportation to the hospital was the price of admission.
It was a rough three months and we were COMPLETELY unprepared but we got through it; you can too! Best wishes to your family and your new arrival; feel free to MeMail me if you have any other questions / need to vent at someone who's been through it.
posted by jordemort at 10:47 PM on September 27, 2015
My son was born 3 months ago at 34±5 weeks, and spent two weeks in NICU. It seems like all NICUs vary slightly- we were given a parents room because we were establishing breastfeeding so we were close to our son and were free to see him at any point. We were only in for two weeks so my partner took unpaid dependents leave for those weeks and saved paternity for bringing our son home.
The best bit of advice I was given, (by a Mefite, after I mentioned it in as comment) was that NICU is a weird place to be, and its therefore OK to feel weird about being there. It's also OK to feel weird or upset about not having the initial parenting experience you were expecting, and its definitely worth looking into whether the hospital or a charity offers counselling. Get fresh air and a shower, even if you don't feel like it. Take hundreds of photos. Eat enough. Charge your kindle. Enjoy your baby!
posted by threetwentytwo at 5:43 AM on September 28, 2015 [3 favorites]
The best bit of advice I was given, (by a Mefite, after I mentioned it in as comment) was that NICU is a weird place to be, and its therefore OK to feel weird about being there. It's also OK to feel weird or upset about not having the initial parenting experience you were expecting, and its definitely worth looking into whether the hospital or a charity offers counselling. Get fresh air and a shower, even if you don't feel like it. Take hundreds of photos. Eat enough. Charge your kindle. Enjoy your baby!
posted by threetwentytwo at 5:43 AM on September 28, 2015 [3 favorites]
A week inpatient for me due to preeclampsia gave us enough lead-time for the steroid shots to help ready my son's lungs. He was born at about 32 weeks gestation; 3 lbs, 10 oz, and 17.25 inches. This was 13 years ago. While I was encouraged to come see him and spend time with him in the just-needs-time-to-grow NICU, they did not have room for families to hang out there all day. There were not bedside chairs, the nurses would have to move all equipment to the sitting area.
The hospital was several hours from our town. My husband at the time had taken a few days from work initially, but we decided that he should return home and save the time off for our homecoming. My parents stayed with me at the Ronald McDonald house. At some point during the stay, our entire family was in and out. My son was the first grandchild on my side and the entire thing was scary and traumatic for all involved.
Daily routine consisted of recovery from surgery and trying to drop all the retained fluid while getting blood pressure back under control. I pumped milk and took it to the nursery and waited for access to the NICU. I'm sure I watched lots of brainless tv. I remember having access to a laptop and internet, but I know it was not mine, it must have been my mother's.
In the end, my son only spent 17 days in the hospital. He did not require any breathing support or other interventions.
We were extremely lucky. I hope the same for you.
posted by Talia Devane at 1:31 PM on September 28, 2015
The hospital was several hours from our town. My husband at the time had taken a few days from work initially, but we decided that he should return home and save the time off for our homecoming. My parents stayed with me at the Ronald McDonald house. At some point during the stay, our entire family was in and out. My son was the first grandchild on my side and the entire thing was scary and traumatic for all involved.
Daily routine consisted of recovery from surgery and trying to drop all the retained fluid while getting blood pressure back under control. I pumped milk and took it to the nursery and waited for access to the NICU. I'm sure I watched lots of brainless tv. I remember having access to a laptop and internet, but I know it was not mine, it must have been my mother's.
In the end, my son only spent 17 days in the hospital. He did not require any breathing support or other interventions.
We were extremely lucky. I hope the same for you.
posted by Talia Devane at 1:31 PM on September 28, 2015
Response by poster: Thanks everyone for sharing your experiences xo
posted by peppermintfreddo at 8:37 PM on September 30, 2015
posted by peppermintfreddo at 8:37 PM on September 30, 2015
I keep thinking about you and I hope all is well.
posted by fantabulous timewaster at 3:54 PM on November 3, 2015
posted by fantabulous timewaster at 3:54 PM on November 3, 2015
Response by poster: For those of you who are interested in an update, our little boy was born at 29.5 weeks, weighing grams (about 1 pound 5 ounces).
He spent 145 days in hospital, with his main issues being chronic lung disease, NEC and multiple fractures caused by osteopenia of prematurity. He came off oxygen two weeks before coming home, and pulled out his nasogastric tube for the last time the day before he came home.
Now it's about five months later, and he's doing great. He's seven months corrected and weighs 6.5 kg (14.3 pounds). He's super cute and loves smiling and laughing, kicking his legs, and licking things. Everything feels really normal, he's started solids and is teething like crazy, we go to mothers group and library storytime.
We now have hardly any medical appointments, mainly just physio because he spent so much time immobile and because his weak bones meant we didn't start doing tummy time until later. He rolled front to back the other day and I cried I was so happy.
Thanks everyone for your help above. I was focused on schedule because I'd read a book about premmies and thought I was on top of everything else. Obviously that turned out not to be true! But now he we are and everything is great.
posted by peppermintfreddo at 4:07 PM on August 5, 2016 [4 favorites]
He spent 145 days in hospital, with his main issues being chronic lung disease, NEC and multiple fractures caused by osteopenia of prematurity. He came off oxygen two weeks before coming home, and pulled out his nasogastric tube for the last time the day before he came home.
Now it's about five months later, and he's doing great. He's seven months corrected and weighs 6.5 kg (14.3 pounds). He's super cute and loves smiling and laughing, kicking his legs, and licking things. Everything feels really normal, he's started solids and is teething like crazy, we go to mothers group and library storytime.
We now have hardly any medical appointments, mainly just physio because he spent so much time immobile and because his weak bones meant we didn't start doing tummy time until later. He rolled front to back the other day and I cried I was so happy.
Thanks everyone for your help above. I was focused on schedule because I'd read a book about premmies and thought I was on top of everything else. Obviously that turned out not to be true! But now he we are and everything is great.
posted by peppermintfreddo at 4:07 PM on August 5, 2016 [4 favorites]
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posted by KernalM at 5:14 PM on September 27, 2015