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PostPosted: Sun Feb 19, 2012 3:55 am 
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I was going to post this in that other thread, but this is a bit different as far as an update goes..not the happy news of her being born like that thread ;

So...

Her respiration got WAY too fast, gradually over the course of the day today (actually, Saturday, 2/18..it's now Sunday, 2/19)

So the pediatric doc came in Saturday evening, and he made the decision to send my daughter up the road. The hospital wasn't equipped to handle her if they needed to CPAP her, so they would've rather her be in a place that was prepared..so she's in an NICU unit at a good hospital in Birmingham, Alabama.

It's discouraging after we thought things were going so well, but we're hoping for the best.

I'm not going to tell my wife, but I don't think we'll be bringing our baby home until MAYBE Friday.
And I doubt seriously that we even get to hold her until Tuesday or Wednesday by the way things are going right now.

I sincerely hope that I'm WRONG AS HELL..because I would LOVE to be wrong in this case. Been through this before with my first son. NICU for 13 days...so I know all the terminology, even though thats when i started chasing pills again.

In fact, the night they transported my son to NICU back in 2004, I met up with my mom, who was a BIG pill head then..and she rode with me to the hospital, and hooked me up with some "pill energy" that very night. My wife was in another hospital, and I was scot-free....that's how it all started again back then. From that I went to eating ALL kind of pills and lost the good job I had.

But this isn't going to be ANYTHING like that, as far as the pills go. And my mom lives 400 miles away now..and she can't come up here because of the financial burden for her to travel that far. She has cleaned up though...and I hope she stays that way.

But the terms like pneumothorax and shit...I've heard all that..and know what to expect.

Only difference, all the rules have changed since my son, and this is a different hospital..they have some pretty harsh policies. ESP when it comes to spending the night.

Good news since we arrived...her respiration has slowed a little..so she isn't working AS hard to breathe as she was. I will report back later.

As it turns out, my wife keeps trying to worry about me, because I just haven't been hungry...and barely slept last night. She said when I did fall asleep she was waking me up for something every time, and wanted me to get some food...so she's worried about me right now..but i"m fine.

I did have a headache from not eating..and i am barely typing this message, my fingers are almost not working (so tired that my brain don't wanna work)....so now i'm going ot sleep a couple hours before I go back down to check on my sweetheart again.

(and yes, I've already cried...did that on the drive up here with my wife's dad, but he didn't know -- was pretty dark).

I gotta get going. I keep on pressing letters and holding them down...and I've done filled up the reply box with 3 lines of d's, three lines of l's...and a few other letters. I'll update you guys later and thanks for eveyrone's concern.


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PostPosted: Sun Feb 19, 2012 4:04 am 
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J, Hang in there guy, ya gots some people praying for your family and your new baby. Bless you all.


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PostPosted: Sun Feb 19, 2012 8:48 am 
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Thank you..

I just went up the hall and sat in there beside my daughter for a bit, and to ME...it looked like her respirations were slowed down. Instead of 120 breaths per minute like last night, she's down to about 70 or 80...so that's DEFINITE improvement.

The nurse said that the X-ray showed no improvement in the air bubble that's escaped and is surrounding her heart right now..it's not any bigger, but it's not any smaller either.


The WORST case, she has to have her side cut and a chest tube inserted (NOOOO baby girl..we don't want that!!)

That's if the air bubble gets bigger, or doesn't start to improve on it's own.

If it gets worse, it can cause what's known as a Pneumothorax...which is almost like a collapsed lung, but the air escapes out of a small hole just outside the lung. A pneumothorax usually will heal itself, but sometimes has to have chest tube inserted to "re-inflate" the lung. We don't want ANY inserting of anything done...
I hope this stays as minimally invasive as possible..I don't want her to be going through all of that only a couple of days after bringing us such joy and excitement.

But it seems like she's getting better and is DEFINITELY not getting worse. Right now, she is just holding steady and according to everyone, SHE is calling the shots. She's going to determine the course of action by how she improves. So we'll see, and I'll talk to the doctor in a minute.


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PostPosted: Sun Feb 19, 2012 9:15 am 
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Pic since becoming a patient at Brookwood NICU ...I took this last night while I was standing in her "cubicle" fighting back tears.

And guys, it was ALL I could do not to break down and cry like a little baby last night. I held it together, but I don't know how long I'll be good for...it's liable to be any minute when I start sobbing.

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PostPosted: Sun Feb 19, 2012 11:29 am 
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I'm sorry your going thru this, it is heart breaking to see your baby in the nicu. My twins both had a pneumothorax. Ava's was fixed with a needle aspiration but Adelyn had to have a chest tube. It was horrible to watch her in pain and not be able to hold her and comfort her.

I hope your daughter does not require a chest tube but if she does the best advice I can give is to make sure they are addressing her pain. For whatever reason the Drs at the nicu my daughters were at did not seem too concerned about the pain a chest tube causes. I had to fight them tooth and nail to have them give her pain meds regularly. I've known adults that have had chest tubes and all have said it was very painful. I don't buy that newborns don't feel as much pain. It was evident by my daughters behavior when the morphine would wear off. I am not trying to scare you but just want to share my experience so you can do everything possible for your daughter if she requires a chest tube.

As you know from prior experience this is probably one of the most difficult things you will have to endure as a parent. There is a happy ending, Ava was able to leave the nicu in 8 days and Adelyn in 12. There are now 16 months old and have been extremely healthy since. I wish your daughter a speedy recovery and that you will all soon be at home doting over your new baby girl!


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PostPosted: Sun Feb 19, 2012 11:40 am 
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I forgot to say, I cried every time I saw them. How could we not? Seeing our tiny, precious angels this way would break any parent's heart. Let it out, I always felt just a tiny bit better afterwards. The thing that got me thru was knowing that they were going to be ok. Your daughter will too but unfortunately this is what has to happen to get her there.


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PostPosted: Sun Feb 19, 2012 11:45 am 
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I don't know what to say, this is the third time I try to reply here, but nothing seems to come out right. All I know to do is pray for her, and I just did.

I know this, you have to take it one day at a time Jonathan. Try not to project to far into the future, it'll only drive you crazy.

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PostPosted: Sun Feb 19, 2012 12:46 pm 
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I may just need some sleep, since I haven't gotten much the past couple of days...but the hospital that took my daughter into NICU is really fucking pissing me off.

We're not on Medicaid, so they are going to charge insurance out the fuckin ass for this little stint my daughter is having in their NICU, and they didn't want to let me stay last night in their "parenting room" as they called it...but they did, because we live SO far away...

And since there has been no change in my daughter since last night, and she's the same..they said we could stay ONE more night in their parenting room..but that room was more for parents who's babies are dying or seriously ill...

I almost blew a gasket when she told me that...I started to ask her if there was just nothing wrong and I could take my daughter home, or was she in need of Neonatal ICU...because I don't consider her perfectly healthy right now, and if it werent for the ICU care, she would likely not be on a path to perfect health. I'm not going to say the words, but you know what I'm getting at. But they are going to boot us down the road an hour or force us to pay $100+ a night for a room ...because our baby "isn't dying"...

I'll quit, because my wife has told me I need some sleep, and she's probably right..but I'm bout ready to kill someone...


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PostPosted: Sun Feb 19, 2012 4:38 pm 
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Jonathan -

May God give you the strength you need right now and bless your sweet baby girl.
That picture is so sweet. She will soon be home in your arms....


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 Post subject: What a precious site
PostPosted: Sun Feb 19, 2012 8:01 pm 
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Oh my how beautiful from view she looks totally normal despite a few lines running around her. She will be fine but I totally understand your feelings about the "parenting room". To a parent there is no difference in dying or needing medical intervention whatsoever. The fear, panic, concern and pain is deep. As far as you are concerned your daughter is not well and you don't wanna leave her side. Shame on those nurses. Tell them to go get a job in a methadone clinic if they are going to act like asses. lol. I hope she don't have to have the chest tube but if she does she will still be fine a few months down the road this will be a fading memory. Soon you will be taking her home. We are praying for you all. Look at all that hair.

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PostPosted: Mon Feb 20, 2012 3:39 am 
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We're seeing small improvements with her, and she's doing better than she was when she got here -- by far. We'll be getting a new chest x-ray in just a few hours, the doctor said she didn't want to do another one last night just to make her (the doctor) feel better, but she IS pleased with my baby's progress yesterday. So we're getting good news, as minute as it may be...it's STILL good. And in some cases, no news IS good news.

If you guys don't hear much from me, just assume that things are still improving...because if I'm online posting, that means I have to be close to her instead of us being in there and talking about holding her and feeding her...

Today, they will do that chest x-ray and see, but it MAY be time to start talking about holding+feeding. So far, my baby hasn't had a bottle yet...she's only had IV fluids since birth...but if the chest x-rays show that improvement we're hoping to see, then we'll hear some great news today, and that'll be that it's time to hold and feed..

So if I'm not back on here posting something other than that..just assume that things are progressing in that direction...it may not happen right at 8am or even by 12pm..but SOME time today we should be discussing that IF the x-rays come back the way we want them, and that's showing the air pocket (pneumo) being smaller.

I think if the pneumo is bigger today, they will do a chest tube. I don't even want to THINK about that. Not going to happen.


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PostPosted: Tue Feb 21, 2012 2:55 am 
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http://www.cmt.com/videos/misc/380677/v ... long.jhtml
I just watched the video..and boy did I cry. Sitting at home, nobody up but me and my 15-month old niece, she's the REASON that I woke up...i know she's missed me...
And this time it was uncontrollable tears flowing. I couldn't stop..I left a part of my heart in a hospital bed, over an hour away..
This little girl hasn't been in this world but 3 days or so...and she's already tearing up my heart...and partially, breaking it..especially when we walk out of that NICU and have to come back home!!

Sorry for the sadness..but it's just an emotional time, knowing that I should be up this time of night fixing a bottle, not wishing I could just SEE my baby.

I haven't posted much today, but today has been a good day. Like I said, unless I'm here posting a lot of stuff, then assume that everything is improving.

I just called NICU, shes down to 23% on her O2..so 2% more and the Oxy-hood can be REMOVED!!

I hope tomorrow I can report that we're getting to hold our baby.


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 Post subject: ABOUT THE BABY
PostPosted: Tue Feb 21, 2012 7:19 am 
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J,

My prayers for you and your family is that you little girl gets to come home very soon and this will all be over..like a bad dream...
On an upbeat note....what is her name???

Much love to you and your family,

Slipper


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 Post subject: Re: ABOUT THE BABY
PostPosted: Wed Feb 22, 2012 6:57 am 
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slipper wrote:
J,

My prayers for you and your family is that you little girl gets to come home very soon and this will all be over..like a bad dream...
On an upbeat note....what is her name???

Much love to you and your family,

Slipper


Name: Reagan Nichole
5lbs 12oz, 1:28pm on 2/17. 17.5" long.
Transport to NICU at 8pm on 2/18.

I just called NICU (cause God in heaven knows that even as exhausted as I am, I still can't sleep for SHIT!!! I don't know how in the hell my body manages to keep going even though when I lay down, like last night, I was so tired that i don't even remember going to sleep! But somehow, the past two nights that we've came home to sleep, I've woken up 2-3 times through the night and called NICU to check on my baby girl. I know women have that motherly bond with babies...and their bodies keep going even though they are utterly exhausted and out of energy...but I'm a guy..I don't have those motherly instincts..but something in me has clicked I guess...and I wake up, out of the blue...after being on my feet for 12+ hours in one of the biggest cities in Alabama..and I can't sleep until I call and check.
I'm not saying my wife isn't worried..but she just had a c-section and can sleep better than me under normal circumstances anyway..but she isn't waking up as much as I am..I don't know what it is. Normally, when I am really tired..I don't even roll over during the night!
And now it's been nearly a week that I've been going on no sleep.

You guys might've read my posts where I've talked about going to bed around 6pm/7pm at night and sleeping until 1/2/3am...I've been doing that for 2+ years..mostly because the Suboxone makes me a little sleepy in the evenings..but I've gotten SO used to bedtime being around 7pm that it's hard to break that.
BUT...Since last Friday, on 2/17, when the baby was c-section...I've not had ANY rest...The first night in the hospital, I was SO worried about my wife...and when she FINALLY got in a room, I couldn't sleep in the bed with her. We both knew we wouldn't sleep good without being close to each other, but I slept in a chair next to her with my hand across the bed on her arm...if you want to call it sleep. She felt so bad because she said every time I dozed off, she had to wake me up. Then I woke up on my own 4 times and went down to the nursery to check on the little one...that was the first -- AND ONLY night that she spent in the normal hospital nursery. The next night, I had one of those killer headaches coming on around 4pm that evening..mostly from not eating..and being SO tired/exhausted...
So I laid down in the wife's bed beside her at 4:30pm or so, and dozed off. I woke up to the doctor coming in our room (not the wife's doctor..but the pediatrician). I KNEW something was wrong, because he said he wouldn't be back until sunday morning unless something went wrong..so when I heard him speaking, it was like an alarm clock...even with that headache pounding, I shot up from the bed. He was telling my wife when I woke up and could understand him that he had already got the paperwork started..so I had to interrupt and ask "what paperwork"...so he told me transport. That's when my heart sunk. It was like a direct blow to my heart.
So my wife and i listened, and she signed the consent forms...and he went out of the room to go and make the phone call to the Children's Hospital transport unit, to get the ambulance on the way to pick-up my little angel. I could feel the tears coming..but didn't have time to break down....I had to get things together, because my wife insisted that I leave and go with our baby. That's what you call being torn! She called and got her mom to come stay at the hospital with her that night...and her dad went with me to be with the baby..
So the "fun" began. We left shortly after the transport team came in and put our baby girl in the Isolette. Here's a picture (they came to our room before they loaded her on the ambulance, for us to see her before leaving the hospital:

Image


When they left, it was about 10 minutes later and I was out the door, on the way to the hospital in Birmingham. Got there at close to 10pm...and waited. Wound up spending the night, sleeping in what is known as the "Parenting Room"..if you want to call it "sleep". I got up FOUR times between 12am and 5am checking on my baby. And it's been similar sleep-habits since then...going on little or no sleep every day that she's been in that NICU. Yep, things are looking MUCH better. I just called, and they fed her 15cc of milk yesterday evening before we left. In fact, we waited to see them feed her before we would leave (which put us smack in the middle of rush-hour-Birmingham at 5pm)..but that was OK. She took the milk WONDERFULLY! That was a great sign, because they were talking about some babies that don't want to eat..and they have to be really aggressive with nursing before they can go home. So that was a BIG plus, and the main reason we stayed to watch.
They said that as they go up on her feeding CCs that they will come down on the IV fluids...instead of just stopping it all cold-turkey. So they've gone up to 30CC of milk through the night...and the IV fluid is GONE! NO MORE IV! I just called and the nurse told me that she's now completely OFF the IV, and the ONLY thing now is that she's under the light. So it's been a very fast-changing week full of positive events.

I just can't believe how quickly I changed from sleeping all the time, or early evening bedtime...to being almost like a robot, no sleep, and waking up out of the blue with that baby's face being the first thing I see as I get up. I guess that's the daddy in me or something..I'm not sure.

As I said in some other posts here, when my other kids were born, I was chasing pills.

Here's a BIG kicker ------
My first son, back in 2004..spent 13 days in NICU. The VERY DAY they transported him to NICU..that was the day that I started back on pills...cause I needed that ENERGY. You know, just a little energy to get me through...but I had it under control, right? NO I DID NOT!
That's what keeps going through my mind..I'm not tempted to use opiates now, don't get me wrong. OPIATES ARE THE FURTHEST thing from my mind. In fact, the wife has a script of fukin percocets from her c-section..and I still have the entire script from having 5 teeth pulled a couple weeks ago (16 lortabs I think was the number)...
I don't care about 'em..but it's pretty damn ironic that when my son went to NICU, the addict in me emerged and that's when I called my mom...to get pills.

In fact, the very night that I went to the hospital that my son was sent to, I called my mom to meet me at a gas station here in town, WITH PILLS, and she went with me to the NICU hospital. My wife was still in another hospital, not discharged..but I went to be with my son. On the way up there, an hour away..I picked up my mom, and she brought me like 20 pills..and that's when I started back.

So irony is EVERYWHERE!! Brings back memories...seeing our son in the same position...
but NO part of me wants anything to do with opiates...and the wife knows it too. She knows I don't care about that crap. But we both know that when Joshua was sent to NICU is when I started hanging around my mom again..and eating pills. And less than a year later, I lost my job from laying out to chase pills. And went downhill from there.

This is a picture from yesterday. This picture here..it's one of those "moments"

This is MOMMY'S FIRST TIME holding her baby..and to me...it's just AWESOME! I LOVE THIS PICTURE!!!!
You can just SEE the emotion on my wife's face...look at her..this was about 2 seconds after the nurse handed the baby to my wife...and they are both looking at each other. Even though infants that young can't make out nothing but bright colors..You CAN NOT tell me that a baby doesn't know. THEY JUST KNOW!
I'm SO glad I caught this, even if it was with my cell phone instead of the brand new Fuji Finepix S4000 that came in 2 days ago.

Image

That camera..the Fuji..my wife wanted to order that on 2/16. I told her.."now you can't go in labor since we ordered this new camera...so you gotta wait until Monday to go in labor now.."
I told her that around 4:30pm on 2/16. At 2:30am on 2/17 she woke me up saying her water had broke.
(we already had a GREAT camera..but it's a DSLR. It's a Canon Rebel XTi 12.1megapixel...a GREAT camera..but it's bulky. Wife wanted a camera that was more toward the "Point & Shoot" category.
But that camera is the cause of ALL this trouble..and me telling her she couldn't go in labor. We still are laughing about that, and everyone says that I'm the reason she went in labor!


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PostPosted: Wed Feb 22, 2012 7:39 am 
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Here's a pretty proud guy..looks like he's very happy to be holding this baby girl!

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PostPosted: Wed Feb 22, 2012 8:06 am 
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I am so glad your daughter is improving! Like you I couldn't sleep at all, how I went two weeks without sleep is beyond me but I think we go into super parent mode or something. It is so devastating to have to leave your helpless baby. Once I was able to feed my girls they began improving rapidly, like your daughter they sucked that milk down and even breast fed great.

This is an emotional roller coaster. Like you we were an hour from the hospital, I would get up in the am drive up and stay until lunch time or so and then come back home to spend time with my son's. Wait for my husband to get off and Fo back until like 8 or so and come home to do the whole thing over.

As I said I was able to take Ava home after 8 days, this was a Thursday. Over the weekend Adelyn had a different neonatologist than usual and on Sunday she said I could take Adelyn home the next day. So Monday I got up, super excited! I packed up her car seat and went to take my baby girl home. When I got there her regular Dr was there and said she had to stay one more day and that the other Dr should not have said she would be going home. I was devastated! I couldn't hold in the emotion and just started crying like a baby. The Dr and nurses felt so bad for me and were really upset with that other Dr for getting my hopes up. But the next day I did get to bring her home and I finally had my precious angels home, where they belonged and the nicu was just a memory.

This will all be a memory soon, your daughter is doing great and you will have her home very soon! It's amazing how strong these tiny little babies are, they started life fighting and it is a battle she will win!


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PostPosted: Thu Mar 01, 2012 6:56 pm 
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As you said, it's becoming a more distant memory now..we've been home since Monday (Feb 27). That was a very difficult time for us, financially, emotionally, physically...each one of those were a strain but I'm sure I don't have to explain the difficulties involved. What really beat us up was that traffic. We live in a somewhat rural area of the country...so big-city Birmingham visiting isn't even a monthly ritual for us. MAYBE once every 2-3 months we'll go to Birmingham for some reason or another..but it's DEFINITELY not a habit..Highway 280 going into Bham is AWFUL..it's rated on of the 10 Worst Cities to drive in..I'd honestly rather drive in New Orleans (where I was born, BTW) than I would Bham during rush-hour. So for us, to be forced into driving this stretch of road daily -- and even multiple times daily -- was a HUGE burden. But I would've been damned if I was even going to VISIT the though of leaving my baby up there by herself just because I didn't want to fight the traffic. Would've been a mighty selfish move on my part to feel that way..so we stayed as much as possible. My wife even wanted to come home and sleep in our bed a couple of times, but I didn't want to leave my baby girl..I knew it was just exhaustion starting to set-in with her (she had just been cut open and her guts fiddled with...so I tried to keep her still and not moving around). Riding in the car an hour at a time to drive to Bham and back was NOT the best for her either. Not to mention every time we made the trip, there was at LEAST one person that I wanted to physically STRANGLE. Not choke, not punch..but STRANGLE because their actions behind the wheel were those of a complete fukin moron. (When we got discharged and headed home, I watched a guy in front of me get cut off -- next lane over -- and he pulled up beside the car that did it and stopped at their passenger window. The guy had some car cut in front of him to get to a turning lane..and he apparently didn't like that very much...so he pulled over by the guy's window and stopped to express a)his gratitude, or b)his adjectives and prepositional phrases )

Anyway...we're home now. I'll get some pics posted in a little bit.


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