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 Post subject: Baby in NICU for NAS
PostPosted: Sat Jul 08, 2017 10:17 pm 
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Hi! I'm new to this site, but I was wanting to share my experience with having 2 children while taking subutex during pregnancy. I was diagnosed with systemic lupus about 10 years ago and was on hydrocodone before finding out I was pregnant with my now 1 year old. I switched to subutex after being told it is safer and even the babies that do end up with NAS have a shorter time in the NICU and their symptoms aren't as bad. I noticed immediately major improvement in my quality of life with the subutex. It works for my pain, I'm not loopy, and I am now fully functional whereas before when I was on the "regular" pain pills, sometimes they worked, other times they didn't, and I was constantly on a roller coaster and still spending a lot of my life in bed in pain an unable to even get up and walk some days. My point in mentioning this before I get into what happened with my babies is that I know I've done the right thing by staying on this medication. It's been extremely beneficial to my health and functionality, and quitting taking the subutex while pregnant could've resulted in the loss of the pregnancies. That being said, I'm currently dealing with my 2nd child to have to go through treatment for NAS in the NICU. My daughter who is now one didn't need morphine until she was 6 days old, and they were able to wean her and discharge her before she was a month old. My son, however, was born June 23rd, and so far has only been able to be weaned twice so far in the 2 weeks and 2 days he has been in the NICU. He is now on the highest dose of clonidine and scoring 4s, 5s, and 6s, but we still have a long journey ahead of us in getting to go home. I'd really like to hear about other people's experiences with NAS and how their babies were treated and length of stay, that sort of thing. Also, this time around, they sent child services out to my house. The CPS lady told me I have nothing to worry about, that it's just standard procedure and my Dr can verify I'm on it for lupus and not drug use (not that I believe that should matter, it's a legal prescription and I don't think it's any of their business why I'm on it) so if anyone has experienced that, I'd like to hear about it, too. I hope this is okay to post, if not I'm sorry, I just really could use some advice from anyone who's been there, done that. Thanks in advance!


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 Post subject: Re: Baby in NICU for NAS
PostPosted: Sat Jul 08, 2017 11:11 pm 
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Oh Wow, I can only imagine. I haven't been in your shoes nor will be but I'm struck by your post. I know you are not an addict and are on for lupus. Thank you for not shaming addicts.

Amazing post!

Wow, again. Right? I've said it twice. So much RESPECT for you w all you are going thru. Congrats on both kiddos especially w all you have going on. Wowo.

More will come along, for sure. Sometimes takes a bit of time. Pretty sure you've done thru all the prego threads?

Just sayin that hope you keep posting w updates bc we all need to hear the outcome -- and especially details. Mom's are starving for this. FYI, more posting and questions - helps us - help you. And then you get the info you are needing!!! Kinda why I'm posting.

Dose and times you were on before, during and after with each kiddo? Ya, it all is important here, even w no replies, folks are clicking, reading. lurking and learning and we all really thank you for this!!

More will follow! Best tonight, Pel

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 Post subject: Re: Baby in NICU for NAS
PostPosted: Sat Jul 08, 2017 11:33 pm 
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Thank you for responding. Yes, I have absolutely been reading through the threads and have noticed some of the threads that need updated the most, sadly aren't. This site was a lifesaver my first go round with the NICU, but this time I really felt compelled to sign up and post my situation after reading some of the other stories on here. And also, I may be on the subutex for lupus, but I am definitely dependent on it, the way a diabetic needs insulin. I've never really abused my meds, but the fact of the matter is I can't just stop taking them tomorrow and not go through withdrawals. It's not my place to judge anyone for something they can't help or control. So as far as addiction goes, frankly I have much respect for those that recognize they have a problem and get help in treating it. Anyway, my dose is 8mg, every 8 hours. And I have been on this same dose from the get-go, about a year and a half ago. In my particular case my Dr said not to take it all in one dose everyday, but to space them out to get the most analgesic effect. Also the CPS issue is in the state of IN, though my Dr is in KY, and my son is in the NICU in KY.


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 Post subject: Re: Baby in NICU for NAS
PostPosted: Sat Jul 08, 2017 11:50 pm 
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Thank you so much for sharing your experience! It is so helpful to have stories of people who have been through your situation.

When your first baby was diagnosed as having NAS did you agree that she was struggling? Was there a noticeable difference between your daughter's symptoms and your son's?

The reason I ask is because some moms have felt that the doctors/nurses diagnosed NAS because of fairly normal baby behaviors. They felt judged and that their babies scored higher on the NAS chart because of bias in addition to any symptoms. I realize that your situation is different because you are on the medication for pain management, but I wondered if you felt any bias, especially since CPS paid you a visit.

So glad you posted!

Amy

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 Post subject: Re: Baby in NICU for NAS
PostPosted: Sun Jul 09, 2017 12:16 am 
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Thanks much. Arlica!
Imo, and what we all read, absolutely, you did the right thing by staying on bup.

So you are on 16 soon to be 17 days w son in ICU. Ya, you've noticed the threads here pre/after birth, maybe w some NAS, it seems like Mom's go on w their lives OR get sucked by a giant vacuum cleaner of need that vacuums all their time away and we don't hear back, Sorry. Wish we'd have more here on this.

So you are important and helpful here.

So 24mg/day in multi divided dose for pain?

Is your newbie son only on clonidine or also on micro doses of morphine or on?? ?

NAS studies so far show, no correlation to Mom's bup dose. Seems no one yet knows why one precious child is there longer.

Hopefully one of the visiting Drs or others w actionable info here will respond.

Just know you are heard! Big welcome here. Pel

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 Post subject: Re: Baby in NICU for NAS
PostPosted: Sun Jul 09, 2017 1:22 am 
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Arlica wrote:
I switched to subutex after being told it is safer and even the babies that do end up with NAS have a shorter time in the NICU and their symptoms aren't as bad. I noticed immediately major improvement in my quality of life with the subutex. It works for my pain, I'm not loopy, and I am now fully functional whereas before when I was on the "regular" pain pills, sometimes they worked, other times they didn't, and I was constantly on a roller coaster and still spending a lot of my life in bed in pain an unable to even get up and walk some days.


Welcome to the forum Arlica - Congratulations on the healthy babies!! I don't have any experiences to share with you because I'm a male, but there are a couple of things that I thought of while reading your post. First of all, you don't have to be an "addict" to be treated with prejudice. A few of my female friends have been through pregnancies while on narcotic pain killers and they were treated like addicts almost from the day they entered the hospital.

I'm sure you've encountered some kind of social stigma that wasn't deserved or fair because you're taking buprenorphine, and for that I'm sorry. It never should have happened. Even the visit from CPS was a little borderline if you ask me. But in the end, I know they're trying to protect the welfare of our most precious resource. I'm glad that the woman from CPS actually came out and told you directly that you had nothing to worry about. And maybe that gave you a little bit of comfort while having to endure the visit.

I have a friend that lives in Georgia and she's been battling Lupus on and off for about 20 years. It's a complex disease and when she has a flare up, it's really tough on her and her ability to be a mother. I've seen her at her worst and it broke my heart. She has to take steroids to survive and they cause her to gain massive amounts of weight in short periods of time. I've had weight problems myself but not usually due to a medicine. Of course that can be hard to deal with emotionally and that's one of the reasons why she used to abuse her pain medicine. It was something she could get from a doctor and it made her feel better, at least part of the time.

When were you properly diagnosed? Are you stabilized now and on medication for it? My friend has had all kinds of stomach problems due to all of the NSAID pain relievers she's taken over the years. Do you experience many side effects from your lupus medication? Every time my friend goes back on Prednisone she swells up, gets acne, and now she's beginning to show symptoms of osteoporosis from the years of being medicated. She started back up on methotrexate at the beginning of the summer. I worry about her because I know that medicine can cause quite a bit of nausea and headaches when she takes it.

Obviously you have to take extra good care of yourself to prevent flareups. That must be tough as a mom. Isn't systemic lupus the most common type? I was told there are different kinds. Well I'm sorry I don't have much in the way of advice but I did want to welcome you and let you know we're all interested to find out more about you and what you're dealing with. You'll be one of the very few people here that doesn't have an addiction problem. I hope someone comes along that can answer some of your questions. Take care for now!!

- OM

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 Post subject: Re: Baby in NICU for NAS
PostPosted: Sun Jul 09, 2017 7:26 am 
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Wow! So much to respond to, and I was worried no one would read or reply to my post! LOL I truly appreciate all the replies and I'll try to address all the questions to the best of my ability. Amy, I did notice some definite signs of withdrawal with both of them. I will say, when my daughter was in the NICU they kept scoring her for reflux issues, but I came to find out after taking her to her first pediatrician appt, she in fact had reflux, and was on baby zantac up until we started feeding her solids. But the way I see it, it's better safe than sorry, and I wouldn't want to take the chance that she had NAS and not treat it. I wouldn't want to go through withdrawals and I dang sure wouldn't want that for my babies. The nurses both times have been really nice and I don't feel as if there was any bias from them. However when it comes to the child services lady, I'm not sure what to think. I know for a fact the hospital told her I was on the subutex for lupus, however when I excused myself to use the restroom during her home visit, she took the opportunity to ask my husband if I took my pills as prescribed and if I had a drug problem, as if I couldn't hear her from the bathroom, or like my husband of all people would've "ratted" on me LOL Pel, both my daughter and my son were/are being treated with morphine, however my son is on clonidine as well. @openmind I'm sorry to hear about your friend with lupus. I know first hand how significantly lupus affects every part of your life. I'm actually back on the prednisone now, but of course I couldn't take it while I was pregnant. I have some of the same issues with it, as far as the weight gain goes, and then when you're off of it, it's actually worse than before because the extra weight means it's harder on your joints to move, walk, pick up babies, really it's more painful to do just about anything when you stop the prednisone. My doctor prescribes a relatively low dose of it for this very reason. And the methotrexate is no joke, either. Anyways, as for the CPS situation goes, it straight p*sses me off that they interfere the way they do. There are so many children out there right now that legitimately need intervention in their lives, and here they are wasting their time on families that have their sh*t together because they are taking an absolutely legally prescribed medication. I cannot believe how intrusive the whole situation is. They wanted a tour of my home, and even asked to see our master bathroom. How crazy/pointless is that? As far as being stereotyped, I get it. It doesn't really matter why I'm on the subutex. I still struggle with what to tell family members, people who have personally witnessed all the pain and suffering unchecked lupus has caused in my life, people who tell me all the time how happy they are to see me doing so much better, how do I tell them one of the medicines that has caused that improvement is the reason I've had 2 babies in the NICU? Or the guilty feeling I get because I got pregnant again after going through the NICU with my daughter? Btw, I got pregnant with my son over a misunderstanding of when I was supposed to go back to renew my depo shot, so he was a total accident. A wonderful accident, but unintended all the same. Well I hope I've answered everything, I know there are people reading through these threads that might benefit from knowing what I'm going through, because I was one of those people reading through all the posts a year ago when my daughter was being treated for NAS. I will try to answer any questions I get if there is anything else anyone might want to know and hope to hear more from others about their experiences, not necessarily just other moms, but anyone who has anything to say. I really, truly appreciate all of you taking the time out of your busy lives to respond. Thank you all so much! I'll keep posting updates as they come!


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 Post subject: Re: Baby in NICU for NAS
PostPosted: Sun Jul 09, 2017 7:33 am 
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Oh yeah, I almost forgot, I was diagnosed 10 years ago.


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 Post subject: Re: Baby in NICU for NAS
PostPosted: Sun Jul 09, 2017 10:33 am 
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Hey Arlica welcome!

Well I didn't become addicted until after my 3 children were born, so I'm very grateful for that. So I don't have experience with NAS. Ur lucky u got nurses and staff that wasn't looking for symptoms in ur babies, like Amy mentioned, because that happens a lot more than we realize. Thankfully u didn't have to deal with that and actually trusted ur team. That's good news.

I've unfortunately had my run ins with child services. Now I know there's great ones that really care about the person and want what is best for the children and best for the parents. There's also a few that sees a person in this kind of situation and the stigma automatically starts. I had an ex husband, who was a police officer, constantly stopping by the child services office in uniform asking them to investigate me. In that situation, am I going to be treated without bias? My experience isn't good with them. At the end of the day, I was an addict so I know I wasn't the best I could be but my situation was helped tremendously by a police officer who had an ax to grind. Gosh I get upset because my area is kind of ridiculous and my ex abused his police officer powers over and over with me and the system let that happen to me. Anyway, I just wanted to share a little bit of my experience and I think ur experience will go much better than mine. Ur worker probably has to ask those questions. I'd assume it's standard for them to come to ur home if the hospital has contacted them. U have a valid script so ur doing everything ur supposed to.

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 Post subject: Re: Baby in NICU for NAS
PostPosted: Sun Jul 09, 2017 2:38 pm 
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Oh, wow. What a jerk! It's kind of odd you should mention that, because at one point when CPS lady and I were just sort of making small talk, one of the things we were talking about was how overloaded they are over at child services because they get a lot of bullsh*t calls, particularly from bitter exes. And they know they are B.S. calls but they still have to go check them out. Obviously in your state they are not hip to the fact that this regularly happens. I'm so sorry to hear about your battles with them, I hope you are done with them now! And I'm hoping my situation doesn't turn into a SITUATION with them. I know she also kept complimenting my house and how clean I keep it and she said my daughters seem really happy. But still, she can say all she wants, until I hear my "case" is closed, I don't trust any of it. This is my family they are messing with, my whole world.


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 Post subject: Re: Baby in NICU for NAS
PostPosted: Sat Jul 22, 2017 10:44 am 
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OpenMind wrote:
Arlica wrote:
I switched to subutex after being told it is safer and even the babies that do end up with NAS have a shorter time in the NICU and their symptoms aren't as bad. I noticed immediately major improvement in my quality of life with the subutex. It works for my pain, I'm not loopy, and I am now fully functional whereas before when I was on the "regular" pain pills, sometimes they worked, other times they didn't, and I was constantly on a roller coaster and still spending a lot of my life in bed in pain an unable to even get up and walk some days.


Hi Arlica
Thanks for sharing your story. I had no idea the NICU stay would be that long for a baby! That must be so hard with another little one at home. The more we all know the more we can help others.
Keep us posted.
Sis

Welcome to the forum Arlica - Congratulations on the healthy babies!! I don't have any experiences to share with you because I'm a male, but there are a couple of things that I thought of while reading your post.

- OM

Hey OM
i had never realized you were a guy! lol oops.
Sis

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 Post subject: Re: Baby in NICU for NAS
PostPosted: Sun Jul 23, 2017 11:04 pm 
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SisterMorphine wrote:
Hey OM i had never realized you were a guy! lol oops. Sis


Sister - That seems so weird to me but I can understand that you would have no way of knowing unless I said something. I thought I had made it pretty clear I was a guy in a few other posts but maybe you never had the chance to read them until now. I hope you're not disappointed or have a different opinion of me now that you know, unless of course it's for the better.

It got me to wondering if maybe my writing seems feminine in some way. Maybe I'm a little more in touch with my emotions or at least I'm more open to talking about them more so than the average guy. Maybe that means I'm above average. I admit that recently I have sounded more emotional and have been complaining about putting on weight since I started treatment. I suppose if we follow the usual stereotypes, the odds would be that someone making such comments would most likely be female.

The more I think about it and the more I reread my own posts... yeah I could see it I suppose. I'm not at all girly though. I'm a manly man that just happens to be a little more on the sensitive side and not afraid to show it. I really try to just be the same person here as you would meet in the real world. I'm a romantic, creative type and I often feel more comfortable talking to women for some reason.

I think the only other thing that would have given it away would be the picture I use for my forum avatar (headshot). It's a picture of a man with a shaved head with a zipper opening the mind... ala "OpenMind". Well now the cats out of the bag. I hope you'll still respect me in the morning!! :wink:

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 Post subject: Re: Baby in NICU for NAS
PostPosted: Mon Jul 24, 2017 12:36 am 
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I have always pictured you as a guy from the get go. I think you may be more in touch with your feelings than the average Joe, but in my opinion your writing is not at all feminine.

Amy

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 Post subject: Re: Baby in NICU for NAS
PostPosted: Mon Jul 24, 2017 10:28 am 
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Hi everyone (gals AND guys) LOL So, a quick update. My son turned a month old yesterday, and he's still in the nicu. He is down to .05 on the morphine which means he has 3 weans left (they stop at .02) Yesterday morning, after a month of me asking and asking and pumping and pumping, they finally started giving him some breast milk along with his formula. Of course my supply is low due to the constant separation and stress, but just the 35 ccs per feeding has seemed to make a HUGE difference. Normally on a wean day his scores are between 8 and 12 at first, and it takes about 36 hours to start getting 5s and 6s so he can be weaned again. Well yesterday was a wean day, but he's been scoring 6s and now 5s and 4s! So if anyone is in the same situation, definitely keep at it until they give your baby your breast milk. The wean off of the clonidine is supposed to go much faster than the morphine, but we are not going through that part yet, so I can't share any details about the clonidine wean until my son is completely off the morphine and they start tapering off the clonidine. I will definitely post more about that when the time comes. I'm crossing my fingers hoping the doc will decide to wean again today since his scores have been amazing, then we will be down to 2 weans left, which is about 4 or 5 days til we are off the morphine!


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 Post subject: Re: Baby in NICU for NAS
PostPosted: Mon Jul 24, 2017 12:50 pm 
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Arlica thank u for the updates! U are helping others just by keeping us updated on u and ur child's journey. U must be so strong!

We're all wishing ur sweet little baby nothing but greatness and happiness. Ur a great momma :)

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 Post subject: Re: Baby in NICU for NAS
PostPosted: Mon Jul 24, 2017 5:57 pm 
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You guys are so close!!!

It doesn't surprise me one bit that your breastmilk is making a difference. It's tailor made for our babies and there's a reason we produce it as a natural part of childbearing. Good job keeping up a supply for Mr. Boy! When you bring him home and he is nursing regularly, maybe you can increase your supply.

I'm sure it's been hard not to be able to bring him home, but you've done what's best for your son. Good for you!! You won't ever take having him home for granted. That's for sure!

Amy

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 Post subject: Re: Baby in NICU for NAS
PostPosted: Tue Jul 25, 2017 7:24 pm 
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OpenMind wrote:
SisterMorphine wrote:
Hey OM i had never realized you were a guy! lol oops. Sis


Sister - That seems so weird to me but I can understand that you would have no way of knowing unless I said something. I thought I had made it pretty clear I was a guy in a few other posts but maybe you never had the chance to read them until now. I hope you're not disappointed or have a different opinion of me now that you know, unless of course it's for the better.

It got me to wondering if maybe my writing seems feminine in some way. Maybe I'm a little more in touch with my emotions or at least I'm more open to talking about them more so than the average guy. Maybe that means I'm above average. I admit that recently I have sounded more emotional and have been complaining about putting on weight since I started treatment. I suppose if we follow the usual stereotypes, the odds would be that someone making such comments would most likely be female.

The more I think about it and the more I reread my own posts... yeah I could see it I suppose. I'm not at all girly though. I'm a manly man that just happens to be a little more on the sensitive side and not afraid to show it. I really try to just be the same person here as you would meet in the real world. I'm a romantic, creative type and I often feel more comfortable talking to women for some reason.

I think the only other thing that would have given it away would be the picture I use for my forum avatar (headshot). It's a picture of a man with a shaved head with a zipper opening the mind... ala "OpenMind". Well now the cats out of the bag. I hope you'll still respect me in the morning!! :wink:

no worries! i've read your posts since you came here. idk why i thought that. you write very well and you're nicely chatty, but that doesn't really point to any gender.

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 Post subject: Re: Baby in NICU for NAS
PostPosted: Wed Aug 02, 2017 3:32 pm 
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This is my biggest fear. I know there is no way to know whether my baby will end up needing to stay and be treated or not but I am terrified at the thought of being discharged and sent home without her. Especially for a diagnosis that is more "imagined" due to my history and normal newborn behavior than actual signs of distress.
My OB says that in his experience here at this hospital that the baby usually goes home when mom goes home. That unless there is something significant happening I shouldn't expect them to keep her, just to monitor her, only due to my history or reported medications.
He said the only way to know for sure how the neonatologist may handle it (as far as whether they'll automatically keep her) is to meet with them and discuss it.. however he feels that that is really just opening the door and giving information that is not really necessary and could end up shooting myself in the foot...

And he believes that my intention to breastfeed is HUGE when it comes to "treating" any signs/symptoms of dependency she may exhibit.

It does make me wonder though why it's not standard practice for NAS babies to be given breast milk as part of their treatment instead of just treating them with other opiate medication... It sounds like in Arlica's case that that may have helped significantly.

Many thoughts and prayers are with you during this time. I can't even imagine and hope you get to take your baby home soon!


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 Post subject: Re: Baby in NICU for NAS
PostPosted: Sat Aug 12, 2017 12:36 pm 
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Arlica- I can totally relate. The suboxone combined with low doses of pristiq and ability work for me. I'm not loopy or anything like that. I feel as normal as I think my body is capable! I'm terrified of having to get off of it one day... ugh.


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 Post subject: Re: Baby in NICU for NAS
PostPosted: Thu Aug 17, 2017 12:08 pm 
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Hello..First of all congrats on your baby! I also had a baby recently 8/8/17. My son is in the nursery (as far I know this hosp. Doesn't have a NICU)I feel horrible..and know exactly how u feel.Around day 3 he started excessive sucking and watery stools. The nurses scored him a 9 at the highest score , that was day 4 I think.my husband and I didn't agree with it..and didn't know what to do..we didn't want him on morphine..but we also didn't want to to be wothdrawing (I know how awful it can feel) My background : Been on Suboxone/Subutex for 10 years. Subutex the last 3 years. I was addicted to lortabs per a back problem and had a doctor prescribe me them. I started the pregnancy on 6mg.Bupe. Then 3mg. Then 1mg (by 2nd trimester) Then weaned to .5 ..then tried to do .25 (besides a few days a week on this dose , I functioned better on .5) So the last few months of my pregnancy I was on .5- .25. Super low dose..felt quite proud of myself. I have a bupe doctor and told my OB I was on it..and how I weaned..etc. I honestly felt My baby would be perfectly fine. Because of the low low dose. I have read the dose doesn't matter. I read several stories on this forum as well. Mostly good outcomes. So I was mortified when my baby had NAS.Like, As if My life and happy time in my life was destroyed. He is otherwise a healthy 8lb 5 oz baby boy..my 5th child. Planned and wanted very much.Anyway once they are getting weaned there's nothing we can do but wait..as a parent it feels like we have no say..and our lives are controlled by the nurses scores and doctors orders. He started the morphone on 8/12/17. The first day he was on too much and too sleepy. Dose got lowered. And its been lowered 2 more times since that.all within 6 days. Doc said of he's handling the doses..he can have his dose lowered every 36 hours. His symptoms now are mild IMHO. Loose watery stools..(loose is normal for breastfeeding..I don't think they are super watery at all) and sometimes he sleeps less than 3 hours after feeding. And his temp was 99f. Seems so subjective the whole scoring thing..even the head nurse told me this. His scores have been between 2-6 yesterday. The "fever" didn't help..but these are "acceptable" to the doc. Which is good. His current dose is .16 ..How much is your son on? Besides family I'm having a hard time thinking of a truthful way to tell friends at church, etc. I want them to know he's good..so they don't worry..but I don't wanna lie. Maybe we can help each other get thru this?


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Fond Du Lac Psychiatry
Dr. Jeffrey Junig, M.D., Ph.D.

  • Board Certified Psychiatrist
  • Asst Clinical Professor, Medical College of Wisconsin

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