Doulas and Preemies

[teagansmummy]

Hello everyone!
I am a fairly new antepartum, birth, and postpartum doula working in Minnesota.
I am looking into how I can best serve women and their families when they welcome a premature baby into their lives. Any tips would be very helpful. I have only experienced the NICU world briefly and so appreciate all the help I can get from the people who have been there (*are* there). What kinds of things would have helped you through your pregnancy (especially if it was "high-risk" or you needed to be on bedrest), birth, and postpartum period? What kinds of things would you expect a doula to know or hope they could offer you information on?

Thank you so much for your help.
~Brittney

[WednesdayO]

I was CAPPA-trained as a Postpartum Doula earlier this year, and there was very little about preemies. As someone who experienced the NICU for 3 months, had oxygen & monitors at home, and who has worked with preemies in child care, I realized too that support for the preemie family population is lacking in many places.

Originally Posted by teagansmummy

What kinds of things would have helped you through your pregnancy (especially if it was "high-risk" or you needed to be on bedrest), birth, and postpartum period? What kinds of things would you expect a doula to know or hope they could offer you information on?

For me, having a variety of things to do was important. I played cards & board games, watched a little television, caught up with friends & family on the phone, etc. I had HELLP Syndrome, but everything snowballed so quickly that I was only on bedrest a couple of days before I was induced and had an emergency c-section. During the labor process, I had to be "drugged" so I wouldn't have seizures and all that, but it was nice having someone sitting with me at all times in case I got sick or needed a cool washcloth. My best friends afterward were pillows... lots of pillows. I could not get comfortable, and I would have hot flashes and night sweats like mad! I was also thirsty and practically pumping around the clock (even in the car & the NICU), so help in those areas was great.

As far as information on preemies themselves, some good books were nice to have during periods of waiting. At first, it was a little difficult to get around, so I used a wheelchair to visit the NICU at first (this was after the first few days at home too). At first when I had to shop, I used those electric buggies (like Hoveround) because I would get tired easily.

Is this helping any??

[teagansmummy]

Yes, it is helping a ton! Thank you! I found it interesting that DONA didn't really go over how to help premature babies/mommas either. Well they did, but it wasn't very extensive. I would love to be an antepartum/birth/postpartum doula for mom's in this position. I think it is a sorely overlooked group... women, babies, and their families that are having "high-risk" issues are in most need of our support.

Thank you again!

[WednesdayO]

Originally Posted by teagansmummy

I found it interesting that DONA didn't really go over how to help premature babies/mommas either. Well they did, but it wasn't very extensive.

It was the same with CAPPA Postpartum training, but the trainer owns her own Postpartum Doula agency, and she said that many of their clients are preemie and multiples families. I had some previous knowledge of preemies because of my preemie niece and from working with infants in child development centers, so I was at a bit of an advantage when DD was born at 29.5 weeks.

Originally Posted by teagansmummy

I think it is a sorely overlooked group... women, babies, and their families that are having "high-risk" issues are in most need of our support.

I agree completely!! Many don't even know that it is okay to need and/or want support because they have a "supermommy" idea of parenting. Although of course it is not true for every high-risk or preemie family, a lot of them are also lower income and can't afford doula services or don't know they exist.

I'm hoping that I can continue college into graduate studies for family life and parenting education so that I am better equipped to use not only my personal experience as a preemie parent but also my professional experience and education (early care & education degree). I really want to help preemie families make a smooth transition from NICU to home and as the children grow older. I want to keep learning more, because I know there are a variety of issues that I didn't personally experience with my DD.

[samhope]

My doula really helped by doing things she probably does for everyone. Namely she brought a camera and food to the hospital. We rushed there so quickly we didn't have a bag packed or anything. She organized what I needed and asked a friend of mine to bring it to the hospital. She then created a book of my son's birth stories with all the pictures. In all honesty, I didn't need her at all while in the NICU b/c to see her would be to take time away from my son. My mom washed my pumping supplies after every session so I could sleep in between feeds. I lived on the hospital while my son was there, so I ate at restaurants. She also covered the monitor and the clock with a sheet and had the nurses turn off the sound so I could ignore them. She also had me walk constantly b/c that was the only time the nurses let me unhook some of the painful monitors. Glad you are thinking about this!

[ShanaV]

Encourage BFing and/or pumping!!! Preemies and sick babies need BM more than anything, and so many moms think they can't BF, or are traumatized by the separation after a sometimes hectic birth, or aren't determined enough to pump through an extended nicu stay.

For me, my hosp, docs and nurses were all very baby friendly and all encouraged pumping and bfing. But I think many hosps are not like this. My DH, always concerned, often would ask "what's the best thing we can do for them?" or "how can we prevent them from getting sick?" and always the answer was breast milk. Even when you can't hold your baby, you can give them your milk, which is the fastest ticket out of the nicu.

Especially important to note is that when a baby is born early your body knows it and compensates by making richer, more calorie-dense milk. Preemies need this even more than term babies. BM can be up to 35 or 40 cal per oz, as opposed to formula that is 20/oz, or 22-24/oz when fortified. Many moms wouldn't know this and would be doing heir babies such a grave disservice to "supplement" with weenie formula.

[teagansmummy]

Thank you for sharing your experiences!

The setup of a NICU is completely wrong for most areas of the US (and other countries), IMO. Moms and dads cannot stay with their babies, are not fed, etc... are encouraged to "go home and get some rest"... You know the drill. Eventually I would like to see the NICU look more like this:
Individual rooms for each baby, with a full or queen sized bed for parents to sleep on right next to baby.
A full bathroom attached to it. Possibly to cut costs two rooms could share a bathroom.
A "baby doula" trained in premature/sick baby care, premature issues, and feeding concerns to help parents through the many ups and downs of having a baby in the NICU. Ideally insurance would cover these doulas.
Parents are fed by the hospital or allowed to bring food into the room.
Breastfeeding ONLY encouraged and supported
Skin-to-skin a part of routine care of the premature infant.

What else am I missing? What do you guys think? In the meantime, do you think a "baby doula"... someone to be with your baby when you can't be... would be something positive? Something you wish you had?
I really appreciate your input! Thank you all so much!
~Brittney

[WednesdayO]

I agree with you so much! Infants and families in NICUs typically need so much more than average "mother-baby" units, yet those families get to room in with their babies and learn the ropes before heading home.

We only got one night at the hospital before DD came home, and it was in a horribly climatized little room like an awful hotel. DH and I were fed, and DD was in the room with us, but other than a way to call the NICU for help, we weren't given any direct support. We were just supposed to get a feel of how to deal with her oxygen and monitor.

Kangaroo Care was routine to our visits in the NICU. I rarely saw other families doing it, but cultural differences with beliefs and values seemed to play a part in that.

I think the idea of having someone with an infant in the NICU when you can't be there is great. We were fortunate enough to have an awesome primary neonatal nurse and had the same night nurse the majority of the time as well, so we could call at any time to ask how things were going etc. They were only in charge of a 2-3 babies at the time if I remember correctly, so there was always someone there anyway. The other nurses also did a great job of being back-up and help as needed.

[loveneverfails]

I did not have a doula technically, but our home birth midwife was phenomenal. Here's what she did to help me:

1. She bolstered my confidence that I was doing everything right for my daughter. I am the mother of 5, but when baby #5 is in the NICU, you can feel like you don't know anything about anything.

2. She helped me regain a sense of normality, and was very very helpful in terms of breastfeeding. I would want a doula to have done some in depth research about breastfeeding an infant who had been on a ventilator.

Another thing I would like help from a doula with would be finding ways to positively frame things for kids at home. The mom may feel the need to put on a brave face for siblings, and help finding an honest but positive view might really be helpful. Taking pictures for siblings, maybe helping the family plan a birthday party for when the baby comes home... whatever can be done to make this not as big and scary as NICU can feel is awesome.

And thank you for caring.

[jkpmomtoboys]

Hey Teagansmummy,

I appreciate you thinking outside the box and love when people consider that preemies are babies too but really some of those suggestions only work if you have an older premature baby.

Yes the hospitals can be more supportive of preemies and their families but many are going in that direction while honoring the medically challenging journeys many of these preemies go through.

My son was in the NICU for 50 days. Sleeping at the hospital for 2 months? No thanks. I can't imagine how I would have healed from my crash c/s with a nurse in there at all hours of the day and night to take care of my critically ill baby. Monitors beeping and lights flashing. Not restful. Not a typical baby scenario.

Breastfeeding ONLY? Uh - my baby (and many others) are far too sick to nipple feed at the beginning and even most of the way through. My baby had breastmilk only (though fortified at the beginning) but NICU babies frequently cannot nipple feed for weeks or months. Supporting breastfeeding only denies that medical reality.

Food in the room? High level NICU's are sterile, sterile, sterile. We had to wash and scrub and gown up before going in. No way I want someone sitting around chomping a Big Mac (or whatever) around my baby.

I appreciate that there needs to be more support for NICU babies and their parents. However, when babies are really sick and in the NICU, medical needs come first and any other "wants" are really just that, wants.

[sparklett]

Originally Posted by jkpmomtoboys

Hey Teagansmummy,

I appreciate you thinking outside the box and love when people consider that preemies are babies too but really some of those suggestions only work if you have an older premature baby.

Yes the hospitals can be more supportive of preemies and their families but many are going in that direction while honoring the medically challenging journeys many of these preemies go through.

My son was in the NICU for 50 days. Sleeping at the hospital for 2 months? No thanks. I can't imagine how I would have healed from my crash c/s with a nurse in there at all hours of the day and night to take care of my critically ill baby. Monitors beeping and lights flashing. Not restful. Not a typical baby scenario.

Breastfeeding ONLY? Uh - my baby (and many others) are far too sick to nipple feed at the beginning and even most of the way through. My baby had breastmilk only (though fortified at the beginning) but NICU babies frequently cannot nipple feed for weeks or months. Supporting breastfeeding only denies that medical reality.

Food in the room? High level NICU's are sterile, sterile, sterile. We had to wash and scrub and gown up before going in. No way I want someone sitting around chomping a Big Mac (or whatever) around my baby.

I appreciate that there needs to be more support for NICU babies and their parents. However, when babies are really sick and in the NICU, medical needs come first and any other "wants" are really just that, wants.

She's right.

We were in for 21 days and I was recovering from pre-e/HELLP & a c-section for most of that. I really needed to rest and get solid sleep at home. Our final three days in the hospital were spent rooming-in together and the nurses made sure I was fed during that period. I was given excellent breastfeeding support through the whole stay by the NICU IBCLC. We were on the sterile side of the NICU for 15 days and eating around the babies was a huge no-no. There was no way my son would have been able to nurse and breathe during the first week, so a BF-only policy would have been terrible for us. We were strongly encouraged to pump.

But here's where you CAN be helpful:
Our midwife was 100% there for us as soon as we brought DH home. She helped with nursing, swaddling, and helped us build confidence in our parenting skills. As a doula, you could easily do something like that.
When we took our emergency trip to the hospital, all I had were the clothes on my back and we had an hour from when I was admitted to when I was rolled into surgery. We were missing a camera (never got pics of DS' birth), pajamas, slippers, etc. I really wish we had someone there who had BTDT, to remember those kinds of things and have them ready for me. You can also help prepare/coach a mom through c-section recovery. I know this sounds stupid, but I had no freaking clue that I would bleed after a c-section or that pumping would make my incision hurt like the dickens. Sure wouldda have been nice to know that little nugget ahead of time.

One last suggestion is that you should find a hospital where you can volunteer in the NICU (probably as breastfeeding support) to get a better understanding of what moms need. It's different for every family, so experiencing as much of that as possible would be beneficial for you.

[noahs.mom06]

Our NICU had private rooms with pull-out beds, and I stayed in the room with my daughter for all but maybe 6 or 7 of the 127 days she was there. Except for her TPN nutrition, she received only breastmilk, and the first time feeds were really established, she took them directly from the breast. (Unfortunately, that only lasted a couple of weeks before she stopped tolerating feeds again- she spent most of the 4 months without feeds, just on TPN) We even used our own cloth diapers and babywore in the NICU (I had 6 or 7 different slings in our room, and eventually our nurses would send other moms to me to learn to use whatever carriers they had).

Our room had a bathroom with a toilet and a sink, but no shower. The showers were shared and were in various places throughout the NICU. The NICU also had two kitchens, one of them equipped with a washer and dryer, and multiple rooms for resting, reading, etc, as well as a couple of "sleep rooms" and pumping rooms. We weren't technically supposed to eat in the rooms, only in the kitchens, but the pull-out bed was set up like a couch with cubbies in the back, and I often kept high protein snacks in there and would just pull the curtain a bit when I wanted to eat. I know that our nurses knew I ate in there, but they didn't care. I lived there for 4 months, and they respected that. I cannot imagine what the difference would have been if we'd been in a standard NICU, because I know that our daughter did better because I was there with her 24/7 supervising her care. I agree that all NICU's should be made over to be more accommodating to families who want to stay with their babies.

As a doula who's been through that experience (we brought our daughter home on TPN and continuous g-tube feeds) I also have a strong desire to help families in the NICU, but there just doesn't seem to be a market for it, at least not here (Colorado). One thing I noticed clearly when we were in the NICU was that the vast majority of parents AREN'T THERE. They just aren't. It's really sad, but at least the hospital has volunteers who go and hold those babies... I had no desire to leave the NICU when my daughter was there, but it would have been nice to have someone who came to visit and talk to me on a regular basis, who would have brought me lunch or dinner on a regular basis, etc. I think those are the things that would have been the most helpful.

[WednesdayO]

Quote:

Originally Posted by noahs.mom06 

Our NICU had private rooms with pull-out beds, and I stayed in the room with my daughter for all but maybe 6 or 7 of the 127 days she was there.... I lived there for 4 months, and they respected that.

One thing I noticed clearly when we were in the NICU was that the vast majority of parents AREN'T THERE. They just aren't. It's really sad, but at least the hospital has volunteers who go and hold those babies... I had no desire to leave the NICU when my daughter was there

Wow, noahs.mom06! You had the A-1 dream of a NICU!! We only got one night at the hospital before DD came home, and it was a pretty small room like a bad hotel. DH and I were fed terrible food, and DD was in the room with us, but other than a call-button to the NICU for a nurse's help, we weren't given any direct support while there. We were just supposed to practice dealing with her oxygen and monitor.

I also noticed families weren't there very often. Many of them had several other children at home or simply had to work. At first, DH and I (also our parents) were there a lot, but after 6 weeks of maternity leave, I had to return to work. There was no way we could have afforded to take care of her upon discharge if I hadn't. DH was in the military, and even though all the medical stuff was free, daily living expenses weren't. I pumped all day while at work teaching PreK (thanks to great & understanding admin), then returned to the NICU ASAP after all the children left that afternoon. The NICU was also 30 minutes away minimum, so the drive made it worse. I only missed one day out of the 3 months DD was there, and that is because I had bronchitis and was completely run down.

[Ky-Momma]

The setup of a NICU is completely wrong for most areas of the US (and other countries), IMO. Moms and dads cannot stay with their babies, are not fed, etc... are encouraged to "go home and get some rest"... You know the drill. Eventually I would like to see the NICU look more like this:
Individual rooms for each baby, with a full or queen sized bed for parents to sleep on right next to baby.
A full bathroom attached to it. Possibly to cut costs two rooms could share a bathroom.
A "baby doula" trained in premature/sick baby care, premature issues, and feeding concerns to help parents through the many ups and downs of having a baby in the NICU. Ideally insurance would cover these doulas.
Parents are fed by the hospital or allowed to bring food into the room.
Breastfeeding ONLY encouraged and supported
Skin-to-skin a part of routine care of the premature infant.

That pretty much IS how our NICU was with our DS2.  We had a private room with a refrigerator, bed, bathroom, comfy furniture, desk, phone, computer, ect.  Kangeroo care was encouraged for all family members that came in to visit.  They even allowed our 1yr old to stay in the room and he got a couple little minutes of kangeroo care once DS2 was stronger.  We were allowed to bring drinks of any kinds and keep food in the fridge but we were told that due to sterile issues the actually eating should occur next door.  Every three or four rooms shared a bathroom.  Each room had it's own breast pump and until the baby was at a point where it could have oral feeds, pumping was greatly encouraged.  There were volunteers who were either doulas, lactation consultants, or just ped. RN's with spare time that would just come in to talk and ask what they could do for you.  Once the baby was out of an isolette, you even had the freedom to care for all your baby's needs that was feesible.  The nurse would come in, unhook everything, then WE were the ones to bathe him.  We were able to BW once he was off his oxygen as long as the nurses knew we were disconnecting his monitors for a short time.  I know not all are like that, but many are moving towards that.

When DD was born, we were at a diff. hospital and the NICU was very different, but they still offered us a room NEXT to the NICU (as in I just had to walk through a door to be in my baby's room.)  It had a bathroom with a shower, fridge, queen size bed, furniture, and all the hookups so that once DD was stable she was able to stay overnight in that room with me on her monitors.

I think most NICU's now encourage parents to be as active as they are able to be.  They understand that some women NEED to go home and rest where as others, even if in bad shape (like me) can't bring themselves to go home, so they help as much as possible.

I think more doulas in positions where they can help preemie families, even if it's just so they have someone to talk to, to ask questions, ect, would be so wonderful!!

[maryeliz]

I'll be the Debbie Downer and talk about a few things that didn't work for me.  I started out my pregnancy with a midwife practice and was admitted to the hospital with pre-e at 27weeks.  I also had some other medical issues complicating my birth.  Everyone agreed that I was now very high risk and would deliver with a high risk ob, but the midwives would continue to attend and be involved in my care and medical decision making.  This sounded like a really good solution to since I was very unhappy to be heading toward a super medical birth.  Unfortunately, in my case, I found a couple of the midwives really unprepared to be supportive of what ended up being a pregnancy and birth that was dangerous for me and for my babe.  I felt like one of the midwives 1) had very limited knowledge about my condition 2) had not dealt with her own issues about "non-natural" births.  It seemed like she dealt with her issues by ignoring me and my partner as much as possible, including blatently ignoring us when we were just at one of our lowest points and obviously terrified.  I felt that another of the midwives was just really insensitive-comparing my tears about my 29weeker on a vent in the NICU to her baby blues after the birth of her healthy 9lb baby, and letting an LC give me an extended lecture about breastfeeding while I was crying about my baby (I was already pumping and committed to breastfeeding, but it was the wrong lecture at the wrong time).

Things I would have wanted to hear:  congratulations on your beautiful babe, know that it is okay to be scared and sad.  It's okay if it's scary to look at your baby and you don't feel bonded, bonding really will come in time.  Everybody has a different NICU experience, if you want to be at the NICU all the time that is fine, but if you can't deal with being in the NICU all the time that is okay to.  If you have a tiny preemie, he or she will only consume a tiny amount of your milk, so if it seems like your milk is coming in okay don't bother staying up all night pumping (I ignored the LC, slept at night, and have 100 extra ounces in the freezer).  It is hard to be a natural parent in the NICU, and every parent will make their choices differently.  As a natural minded parent you will probably need to make compromises, it okay to be sad about that, but don't spend you precious energy on guilt.  Know that even though you may compromise, you can still be an empowered parent in the NICU, if you have questions you can ask to sit in on rounds and speak to the attending doctor. You know your baby best and you have a right to express your concerns about your baby.  You have a right to be involved in medical decision making for you baby and you do have veto power over decision you feel uncomfortable with.

If I had had a doula, I would have wanted her to be able to orient me to the way the NICU works, to know the hospital well and be able to help work through red tape, to help with practical stuff (food, etc.), and mostly to listen.  The best question I was asked in the hospital was asked by the NICU social worker who asked me "What are you most afraid of?" I felt like that question allowed me to honestly discuss what I was feeling at the time.

[luvmybaby333]

Sorry!

[luvmybaby333]

Sorry. Wrong thread!

[luvmybaby333]

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[JoyfamMama]

I am very glad to see this thread as it's been a question weighing on my mind lately. 

I am 31 weeks pregnant (most of my activity is in my awesome DDC :)), but my Preeclampsia is getting worse and worse, and I'm starting to get some HELLP symptoms as well, so I seriously doubt that we will get away without having a premie. The premie baby does not scare me, as I have extensive experience with them. What I am concerned about is the hospital and NICU side of it where I do not have much experience - and not with my own baby.

I have been feeling so very, very out of control with this whole pregnancy and birth, and know from my past birth that I can scream and shout all I want to, but they aren't going to listen to me anyway! DH suggested that I get a doula to help me with getting through the C/S and all of that, since I am pretty much planning to have General An. this time, due to all of the complications of the Epidural last time with DS. Also, he is not confident about communicating my wishes to the drs and nurses who run over everyone anyway. But when I had my emergency C/S last time, ONLY DH was allowed in the OR, so my doula was useless for that anyway. So here are my questions...Should I even bother with a doula if my baby is premie, since they are going to pull him out and wisk him to NICU anyway? And is it possible to have both doula and DH in the OR, if I am able to make it to 36/37 weeks, where there is a good chance of him being just fine, and that is where my wished would come in to the picture (weight and apgars, wrap him in a blanket and give him DH. NOTHING else. DH keeps him until I am able to take and nurse him in recovery, etc)

[MeepyCat]

I wrote this essay, on Handling Oneself in the NICU, for my blog a few weeks ago.  It's some of the things that I wish people working with parents in the NICU would keep in mind, mostly that, good lord, we often need a break.  It is really, really important to keep in mind that no, not all parents can stay at the NICU or come every day.  They have other kids.  They live far away.  They're recovering from surgery and illness.  They are working during the day in order to save up their parental leave for when the baby comes home. 

I hit the NICU when my daughter was born at 32w4d, and I agree with jkpmomtoboys and sparklett about NICU setups.  Some of these things, while they would be lovely, just aren't workable.  The thing I *would* like to see (at a minimum) is one recliner chair per NICU bed, and at least one working breast pump for every two beds on the unit. 

I, too, took an emergency trip to the hospital with nothing but the clothes on my back and the tote bag I'd packed for the beach (I just grabbed the bag by the door when the ambulance came) - I had sunscreen, a towel and a trashy novel.  Only one of those things was any good to me, and I couldn't concentrate on reading anyway.  By the time I got to the hospital, the clothes I was wearing were bloodstained past any hope of recovery.  I agree that I would have *loved* for someone to stop by my house and bring me pajamas and a toothbrush (and also my laptop, my camera, a new pair of slippers, my knitting, lanolin, hand lotion, lip balm, and my own shampoo).

It would have been great to have someone who could come by the house at a moment's notice to stay with DS.  He was asleep, and DH had to let me go in the ambulance alone because there was no one to stay with him.

The NICU is a really emotional experience.  I wish that I had had someone able to create a safe space for me to cry in (the nurses tried to be helpful when I started to sob, and were the opposite - they couldn't tell me things would be fine, I just had to get it out).

I could have used help setting up when it was time to bring the baby home.  She was early, we had nothing ready, and I was just about flipping out (she barely weighs five pounds!  she's not even supposed to be born yet!  I have no diapers in that size!).  Assembling a Pack n' Play and rearranging furniture is not compatible with surgical recovery.  I do have very strong ideas about the ideal setup for a mama who's recovering from a c/s and is bringing a preemie home.  It involves a Pn'P (those bassinet and diaper changing attachments save you a lot of bending and lifting), a bed, a recliner chair, a minifridge, a microwave, and a bathroom, all within a few steps of each other.