potentially long NICU stay- advice? - Mothering Forums

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Old 10-18-2008, 11:04 PM - Thread Starter
 
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I'm 34 weeks pregnant now, with a planned amnio followed by induction if baby's lungs are ready at 37 weeks. Baby Faith has gastroschisis, and most babies with this condition are in the NICU for at least 6-12 weeks. I plan to stay with her 24/7 (the NICU she'll be in is set up for this).
I haven't toured the NICU she'll be in yet, but plan to do that this week, and I have looked at it online and seen that it is incredibly family-friendly and even has private rooms, which the pediatric surgeon implied our baby would probably be in, since she will likely be there so long.
She will have at least 1 but probably more surgeries to put her intestines inside her body, and will be on TPN for awhile after everything is inside and closed up while they determine if her intestines work. Once she poops, then she can start trying to eat.
I don't want her to have bottles at all, does anyone know how likely it is that I'll be able to avoid it? How about pacifiers? Will they interfere with her ability to successfully BF?
Has anyone been allowed to use cloth in the NICU? There are laundry facilities in the hospital for families to use, so we would easily be able to wash dipes... is it worth the effort, or should we just save time and money and use the sposies they provide?
Any insight, advice, etc to help me prepare for this next step would be greatly appreciated!!

doula, wife to Dave ribbonyellow.gif, mom to Noah (5/14/06) superhero.gifand Faith (11/13/08) ribbonlime.gif (Gastroschisis Awareness) 127 days in the NICU, and 6 weeks thousands of miles from home, because of gastroschisis.  Expecting #3 2ndtri.gif July 2011! computergeek2.gif www.frugallynatural.org
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Old 10-18-2008, 11:11 PM
 
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Our NICU in Boulder didn't allow cloth, but were OK in the non-NICU area. They weigh the diapers and I assume they know how much their disposables weigh so they can determine the amount of fluids in the diaper. I'm not exactly sure, but it seems plausible.
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Old 10-18-2008, 11:20 PM - Thread Starter
 
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Small world- I'm in Denver, delivering at UCH and having baby transferred to Children's. I'm excited to see the new Children's NICU in person after having read about it online... the rest of the hospital is awesome so I'm sure the NICU will be very nice too.

doula, wife to Dave ribbonyellow.gif, mom to Noah (5/14/06) superhero.gifand Faith (11/13/08) ribbonlime.gif (Gastroschisis Awareness) 127 days in the NICU, and 6 weeks thousands of miles from home, because of gastroschisis.  Expecting #3 2ndtri.gif July 2011! computergeek2.gif www.frugallynatural.org
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Old 10-18-2008, 11:23 PM
 
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Hi there, sorry that you are going to have to have such a long hospitalization but it sounds like you are getting informed in advance which is great. It also sounds like you have an ideal NICU with (gasp!) private rooms. I wish I had had that when my little one was there. He was in for 5 weeks, so I feel like I have at least a little bit of advice to give. He didn't have gastroschesis, so things might be a little different for your little one, but here's what I suggest.

If you don't want bottles/pacifiers, I would be very up front about it. Put a sign on his isolette with black magic marker that this baby will be breast fed and you do not want either bottles or pacifiers. We were very adamant about these two things with my guy. They were compliant about the bottles (although there were a few times we caught them warming up some pumped milk "in case" I didn't make it their for the feeding. Which is absurd because I never once missed a feeding the entire time he was there. Grr.) The pacifier was a little harder to banish since they seemed to love to pop one into all of the babies mouths. Mine never actually took it (he was practically comaose most of the time) but we often found one tucked into the corner of his bed. We had to get pretty firm about it before they backed off.

Not sure how they will feel about the cloth diapers. Usually in the NICU they weigh the diapers after they are used to get an accurate output count and so they may not be open to using cloth. You certainly could ask but I'm not sure how they'll feel about it. In my experience (again, just my personal experience) there was not a lot of welcoming of alternative ideas.

I have to actually say that breastfeeding was not welcomed or encouraged in the NICU I was in. The only two moms that were there to nurse for every feeding were myself and another woman who I am now incredibly close friends with, and we were both hassled by the staff for wanting to nurse. The staff seemed to encourage breastfeeding IN THEORY, but what they really wanted was for you to go pump so they could put your milk in a bottle and feed it to the baby themself so they could get an accurate intake record. Hopefully this is not the case in every NICU.

I think it's fantastic that you will be rooming in and can be there to advocate the nursing, that will help a lot. Use the lactation consultant that they have. Put her skin to skin near your breasts even when you aren't able to nurse yet as that will still help your milk supply. Be patient and stick with it and things will work out in the end. Get plenty to drink and as much rest as humanly possible (not much in a NICU, but you know what I mean)

I hope things so smoothly with the surgery and I look forward to hearing about your succesful breastfeeding story post surgery. Hugs
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Old 10-19-2008, 08:27 PM
 
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First of all, I hope things go smoothly for your LO and she gets to rejoin her family soon. Any separation is challenging.

We didn't push it with cloth diapers. We use cloth at home, but it wasn't something I was willing to go up to bat for, as there seemed like plenty else I was locking horns over. Breastfeeding was one of them. It was supported in theory, but I got a lot of discouragement from nurses worrying about DS tiring out. But at least they went to tube feed instead of a bottle after that. He did get many bottles of pumped and fortified milk when I wasn't there, but I'm happy to say we've ditched them all and he is exclusively breastfed now. It is possible to kick the bottle habit! Certainly better if it's never formed, but we did what we could. We were asked about pacifiers, whether we wanted them or not. I said I didn't want them, but on the other hand, I wanted him to be comforted, and knowing how little he would be handled, especially at first, I figured it was the lesser of two evils. He never seemed very attached to them, and we don't use them anymore.

It sounds like you have a pretty good NICU to work with. Private rooms sounds almost too good to be true. I dreamed of that, but alas, we had the standard nursery format. Good luck to you!
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Old 10-19-2008, 10:12 PM
 
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I encountered some resistance against nursing too. Be insistent. You can suggest that they weigh your baby before and after feeds to measure intake. In reality unless they have rooming in you can not be there for middle of the night feeds so you are going to either have to let the nurses bottle feed pumped milk or gavage feed. The majority of preemies can go back and forth between bottle and breast with little issue so long as they are getting feed at the breast regularly.

As far as the paci if your baby is going to be on TPN for an extended period I would let her have one. My Randall needed TPN for 10 days due to bowel rest with NEC and it was the only thing that gave him comfort during that time as I could not even pick him up due to chest tubes as well. The LC told me it would probably even help with breastfeeding to let him have the paci during TPN since he was getting to exercise those mouth muscles. Whatever the case it did not hurt him and he is 5 months old and no longer uses one and is exclusivley breastfed. He was my 5th child and I never used a paci but I do feel that if I had withheld one from him during that time it would have made things harder on him.

Good Luck to you and baby Faith and I will be praying for a quick recovery for her and a minimal NICU stay.
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Old 10-21-2008, 11:28 AM
 
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As the parent of a long stay nicu graduate- I need to add my 2 cents...

I am thinking of you and your baby! You might not be in the private room for a few days or even weeks until your baby is stable. As nice as the private rooms sounds, you will then be isolatted from other parents who are sharing your journey and believe me, I really got so much from other parents who would be the babies down the row etc. Also, talking w a nicu nurse friend who works in a similiar nicu as the one you will be in- she said as great as it sounds, its a nightmare for the nurses and its impossible to staff this unit w all these private rooms etc. So in a row nicu, at least a nurse is nearby. In a private setting, it may take a few more seconds- that makes a huge difference.

Cloth- do it when you get home. Spend that time w the baby instead.

As far as being there 24/7- give yourself some breathing room. I had another one at home so the idea of 24/7, not possible. If this is your first it might work but again, allow yourself some room to recover yourself and get strong.

Breastfeeding- A baby w a nicu stay has other things to overcome and might not even be ready to BF. This is coming from a mother that BF my first for 2 1/2 years and she never received an oz of formula. You need to put all your natural/AP things aside for a moment and get your baby well.
I put my breastfeeding energy to pumping. I think I was part cow.
After I got home from our 12 plus week stay, I was able to parent Maggie the way I wanted. My first and formost at the nicu- keeping my baby alive and then getting her home. She got all the cloth and breastfeeding she wanted once home. She also was not even at her edd yet so really she was like having a newborn. She also spent even more time on Daddy's chest sleeping or beside us at night to sleep and breastfeeding or in her sling.

good luck to you and let us know how things are going!

"The true joy of life is the trip. The station is only a dream. It constantly out distances us."
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Old 10-21-2008, 12:47 PM
 
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I put my breastfeeding energy to pumping. I think I was part cow.
HA ha ha. After a 7 week NICU stay with DS, I hear you. When people would ask how pumping was going, I'd just moo.
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Old 10-21-2008, 08:55 PM
 
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You need to put all your natural/AP things aside for a moment and get your baby well.
I disagree with this. There are many natural and attachment parenting things that could be very beneficial for you and your baby in your time in the NICU. This is not a time to let the medical experts take over. You know your baby better than anyone else at this point and while there are some things you can't do - like surgery - you will know better than anyone how to soothe and nurture her. Don't understimate the importance of this! You can help your baby to have a less stressful, less traumatic experience.

I don't think I would worry about the cloth diaper thing, however. We still have some hospitals around us that use cloth, but the hospital I'll be delivering at just switched to disposibles. While we use cloth at home, I wouldn't go through the trouble to wash diapers at the hospital.

On the flip side, I would be very clear about your commitment to breastfeeding. You don't need to set this aside to help your baby get better. Even if your baby cannot fully breastfeed right after birth, whatever you can do to be with her will help. She will need to hear your voice and feel your touch. If you can do kangaroo care that is great.

I agree with some of the previous posters who said that pacifiers are not that big of a deal. I think for a preemie or a sick baby, the pacifier can help practice sucking and be a source of comfort when breastfeeding is not possible. This is not inconsistent with natural parenting.

FWIW, our son will most likely be born prematurely at a hospital where we have the ability to room in. We want to breastfeeding and are going to try to avoid bottles. My plan is to stay there around the clock - although we'll be flexible if we need to. Our hospital is in theory supportive of all of this, although based on our experience with our second, some nurses are not big fans of BF because it's harder to measure and perceived as being more difficult for mom and baby.
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Old 10-21-2008, 09:33 PM
 
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I disagree with this. There are many natural and attachment parenting things that could be very beneficial for you and your baby in your time in the NICU. This is not a time to let the medical experts take over. You know your baby better than anyone else at this point and while there are some things you can't do - like surgery - you will know better than anyone how to soothe and nurture her. Don't understimate the importance of this! You can help your baby to have a less stressful, less traumatic experience.
: I've had some totally insensitive nurses care for my babies and it takes a lot to ignore some of their separation parenting/ nursing ideas. I first thought that kangaroo care was stressing my daughter out a lot, but have seen how it's changed her over the 2 weeks we've been there now. Mummy smell and nuzzling is just sooooo good; almost as good as b'milk, no!?! (or vice versa - they are both unique to each mama) and even if it is for short, short times to begin with. It is worth it even for just a moment.

Definitely be clear on both your short and longterm intentions re: b'feeding from the start. Even with my very clear calls of 'No Formula' from mid labour, we had pressure to supplement. Write it into every bit of space on paper that you can if you are going the No Formula route

My son has not had trouble going from pacifier to breast, but my daughter does appear to have been affected by it. It's one of those individual things as far as I know. Better to avoid it, but not at the expense of leaving your child without some comfort iykwim. Everything has it's place.

Best prayers for a single op. to fix everything and ease for your family.

xx

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Old 10-22-2008, 12:03 AM
 
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Wow, you are luck to not only have private rooms but 24 hour rooming in. That will give you lots of time to bond with Faith. Gastrochesis babies are usually NPO for weeks after birth. Hopefully you get a primary closure (just one surgery to get it all back in). These babies are very hungry and fussy since they cannot eat and a pacifier is usually given to them to help keep them happy as well as to make sure they do not develop an oral aversion. Once they are able to start feeds it is very important to give them an exact amount of breastmilk. Exact as in 5cc or 7cc very tiny amounts. It's just not possible to know how much is coming out while breastfeeding so bottles are usually needed in the beginning. Things you can do: Hold her once she is off the ventilator, pump pump pump, kangaroo care, dip her pacifier in breastmilk to encourage oral skills, ask to practice breastfeeding after you pump (baby won't get milk but it will stimulate milk production and BF skills), and have patience with Faith. Gut babies are S.L.O.W. progressers. Oh...and make friends with Faith's nurses. They will trust you, they will want to be her primary nurses and know what she likes best, they will advocate for her, and will notice subtle changes. It will really make a big difference...I promise! I hope that helps!
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Old 10-22-2008, 10:33 AM
 
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I didn't fully appreciate your baby's condition until the above post, so based on that, I have one more piece of advice. Do not let your milk supply dwindle. even if it means you fill up your freezer, your neighbor's freezer, etc, keep pumping. I can tell you it is possible to bring the supply back up with pumping if you've let it drop a bit, but it's a hard exhausting process full of worry. Just keep it high to begin with.
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Old 10-22-2008, 10:49 AM
 
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I didn't fully appreciate your baby's condition until the above post, so based on that, I have one more piece of advice. Do not let your milk supply dwindle. even if it means you fill up your freezer, your neighbor's freezer, etc, keep pumping. I can tell you it is possible to bring the supply back up with pumping if you've let it drop a bit, but it's a hard exhausting process full of worry. Just keep it high to begin with.
I totally agree and its easy to let happen. After about 4 weeks, mine started to dwindle and I switched to a hospital grade pump which helped.

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Old 10-22-2008, 11:00 AM
 
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I disagree with this. There are many natural and attachment parenting things that could be very beneficial for you and your baby in your time in the NICU. This is not a time to let the medical experts take over. You know your baby better than anyone else at this point and while there are some things you can't do - like surgery - you will know better than anyone how to soothe and nurture her. Don't understimate the importance of this! You can help your baby to have a less stressful, less traumatic experience.

I don't think I would worry about the cloth diaper thing, however. We still have some hospitals around us that use cloth, but the hospital I'll be delivering at just switched to disposibles. While we use cloth at home, I wouldn't go through the trouble to wash diapers at the hospital.

On the flip side, I would be very clear about your commitment to breastfeeding. You don't need to set this aside to help your baby get better. Even if your baby cannot fully breastfeed right after birth, whatever you can do to be with her will help. She will need to hear your voice and feel your touch. If you can do kangaroo care that is great.

I agree with some of the previous posters who said that pacifiers are not that big of a deal. I think for a preemie or a sick baby, the pacifier can help practice sucking and be a source of comfort when breastfeeding is not possible. This is not inconsistent with natural parenting.

FWIW, our son will most likely be born prematurely at a hospital where we have the ability to room in. We want to breastfeeding and are going to try to avoid bottles. My plan is to stay there around the clock - although we'll be flexible if we need to. Our hospital is in theory supportive of all of this, although based on our experience with our second, some nurses are not big fans of BF because it's harder to measure and perceived as being more difficult for mom and baby.
I think you are reading this wrong or maybe I wrote it wrong. If you have a premature baby that is very early, they cannot breastfeed yet until about 30-32 weeks. They are not developed to do that yet. So pump away of course. I had to wait almost 7 weeks. Also, we could not hold Maggie for almost a month, she was too delicate or unstable, never mind all the wires etc. After she got older, we did "maggieroo care" for days and days and continued after she came home.

And I agree w another pp- in this situation, they do need to measure how much the baby is getting.

They also need to weigh the dipes after each change and cloth diapering can be something to look forward to at home.

I think if you are upfront at the beginning that breastmilk and breast feeding are the way to go, they will agree and you all can work together. But if you go in as a crusader, it will be a long uphill battle, like with anything. I never said set this aside.
I remember a local LLL leader whose newborn had to go on the vent and have heart surgery within the first week or so of the birth last year. I had to explain to her why the baby on the vent would not be in her room, etc.
Once she understood, things were better. This baby with issue in her heart is now one years old and breastfeeding away.

I feel you can do all the AP/NFL in the nicu but you must understand it will be a different journey than having a normal delivery and baby moon. And some things are going to have to be set aside depending on each situation.

"The true joy of life is the trip. The station is only a dream. It constantly out distances us."
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Old 10-26-2008, 12:18 AM - Thread Starter
 
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Thanks for all the responses! I will definitely keep everything in mind and won't go into it fighting. I think I'll allow the pacifier b/c of the fact that she won't be able to eat or anything for at least a couple of weeks, and she'll be dealing with surgery pain during that time.
I am leaning towards tube feeding and trying other alternative ways of feeding, but I also plan to ask if they will let me use Faith's own bottles (I had picked some up on clearance b/c I figured DH would feed her once in awhile) since they have a more natural shaped nipple than the little ones they usually use. I do plan to be very adamant about no formula, just breastmilk, and to practice latching on as soon as possible, and even just skin-to-skin contact w/ laying her on my chest as much as I can.
I struggled with low supply with my son for the year I was able to nurse him, so I think I'll be pretty good about pumping regularly.
I'm trying not to get my hopes up about a primary closure... the last time they did measurements was about a week ago, and at 34 weeks her belly only measured around at the size of a 26 weeker... but I do hope that once they can get everything in and closed up, it all works how it's supposed to so she won't have to have more surgeries for that reason. I know the sooner she's closed up, and the sooner her intestines start working, the sooner she can eat and start getting ready to go home.
I also have to be careful myself, so I know I might not be able to stay there all the time, as much as I want, because there's a pretty big chance that I'll have a lupus flare after she's born, so I'll need to be resting as much as I possibly can.
Thanks again for sharing the different perspectives and experiences! I'm sure I'll update as things happen, since I'll have plenty of time...

doula, wife to Dave ribbonyellow.gif, mom to Noah (5/14/06) superhero.gifand Faith (11/13/08) ribbonlime.gif (Gastroschisis Awareness) 127 days in the NICU, and 6 weeks thousands of miles from home, because of gastroschisis.  Expecting #3 2ndtri.gif July 2011! computergeek2.gif www.frugallynatural.org
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Old 10-26-2008, 12:47 AM
 
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You sound like such a wonderful mommy...already making great decisions for your little one. I just wanted to add one thing: these "gut" babies are usually the ones that all NICU nurses hope the mom's choose to pump/breastfeed. Their intestines are so sensitive and breastmilk is SO MUCH better for them. So rest, sleep, visit, kangaroo, drink, and pump.....you shouldn't meet ANY resistance towards using EBM. Ask about using your own bottles (when it looks like Faith is getting closer to trying to nipple), this is a very valid rquest as long as you can bring them clean nipples every day! Again...these babies are usually H.U.N.G.R.Y. so it is better to let them nipple the tiny amount they are able to take, they will feel some satisfaction from swallowing even small amounts. Having full term baby keep a feeding tube in for the weeks it takes to get to full feeds (when you will be able to exclusively BF) is not as comfortable as just letting them nipple. With good oral stimulation/practice while NPO, these babies LOVE to eat, and are good transitioners to the breast. Good luck! I am praying for a primary closure and as fast as possible to full feeds! Just take things one day at a time.

-Katie
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