Pictures of you

[Mrs Swamp]

More cute nephew pix---

here's one, the rest are on my facebook

http://www.facebook.com/album.php?aid=291019&id=850804473

awwwwww how precious ....I love lil babies
Congratulations!

[beantownbubba]

We need a Channing update.

VERY cute, Lurleen!

[GW in IA]

Bethany and Trace, killing time before bedtime last night.

[beantownbubba]

Bethany and Trace, killing time before bedtime last night.

Be still my heart

[Mrs Swamp]

Bethany and Trace, killing time before bedtime last night.

awwwww they are so precious...

[pearlysnaps]

what adorable little ones!

[The Black Canary]

Just beautiful, all of them. From thier little button noses to their shinning smiles!!! Just made my day!!!!

Thank you

ps: and yes we do need a Channing update

[The Drifter]

Erdlivz & The Drifter circa March 1996. Sorry brother, just stumbled across this.

Yes! I love it. Spring break memories...

[The Drifter]

Bethany and Trace, killing time before bedtime last night.

This is adorable.

All these TDD kids pics are adorable. If I had time to reply on each one, I would.

[mgsooner]

We need a Channing update.

Hey guys, sorry, I know it's been awhile. I'm going to try to make this as short as I can without writing a novel.

I never thought I would be in a situation in which I would have to tell a doctor "You're fired", but I think we are officially there. Just to sum up the backstory for those that missed it, two days after Channing was born (at 26.5 weeks) her doctor called us in and told us that her CT scan showed that she had holoproscencephaly (HPE). HPE is a brain disorder in which the brain fails to divide thoroughly into two separate hemispheres. The finding was confirmed by the pediatric neurologist after he looked at the CT scan. At the time I asked them if an MRI would be done in the future, and was told that yes, that would be "appropriate". The pediatric neurologist told us that the brain is easier to see as a baby gets closer to term and that the brain can develop further, but that any further development would NOT change the fact that she has HPE.

Flash forward 3 months. Last Monday Channing had her MRI. After 5 days of waiting my wife finally asked one of the nurses on Friday if her results were in. The nurse says "oh, I didn't even know she had gotten it done, let me go check". This was over lunch and I was not at the hospital at the time. The nurse is gone for awhile and comes back and says "I'm about to make your day". My wife's like, what are you talking about? The nurse proceeds to tell her that two different radiologist had looked at her brain MRI and have deemed her brain "normal". My wife, incredulous, was still like "what does this mean"?? The nurse tells her this means no HPE. My wife doesn't tell me anything about this until she gets home because, understandably, she still didn't believe it. When she told me, part of me was incredibly happy, and part of me was incredibly enraged. Our life the past 3 months has been an absolute LIVING HELL. We have thought our daughter would never speak, never walk, never be able to feed herself, etc, etc, etc. We still just couldn't believe it, so we demanded that the scan be reviewed by a 3rd doctor, the pediatric neurologist. After waiting at the hospital for 5.5 hours on Saturday we finally got a chance to speak with him, and he agrees, normal brain, no HPE. He said, and I quote, "I have never seen anything like this." He goes on to say that CT scans just aren't as reliable as MRIs are, and that the preemie infant brain is a really difficult thing to see/diagnose. Let me just throw in that the MRI results had been in since Tuesday and her main doctor had not taken any measures to inform us. We had to ask one of the nurses if the results were in 5 days later.

We go back to Channing's room at the NICU and tell my parents, who just happened to be there to visit her at the time. There were a lot of tears. Whatever anger I had I had pretty much let go of and chalked it up to just being that the brain is a tough thing to diagnose. Well that lasted until her "main" NICU doctor comes into the room and right in front of my parents basically starts saying that he thinks that are still neurological issues (even though he has no proof of this or virtually no reason to think this) and proceeds to start rattling off some other "issues" that we have literally not heard a word from him or anyone about before. The first issue is that she has had problems eating lately. Every single person we had talked to at the hospital had previously told us that this was likely due to acid reflux and is an issue that affects quite a few preemies. However he is now trying to say this is related to a neurological issue. The second issue, which was apparently pulled from an examination by the pediatric neurologist that literally lasted all of 3 minutes, is that supposedly her eyes aren't "tracking" like they should. He's also trying to say this is related to a neurological issue. Now as you can imagine after being told her brain was normal 10 minutes earlier to have another doctor tell us that she still has neurological problems was incredibly devastating. I mean it's like somebody telling you "you have cancer", "wait you don't", "okay yeah you do". The odd thing about it is after we came back to the room we saw her main doctor out in the hallway talking to the pediatric neurologist that we had just met with, and after that conversation the tone of the pediatric neurologist completely changed. It's like the neurologist just didn't want to disagree with another doctor in front of non-doctors. It also seemed that Channing's main doctor almost WANTED something to be wrong with her just so he can say that his initial diagnosis was not wrong. At this point I am on the verge of punching someone and basically had what amounted to an argument with the neurologist out in the hallway. Channing's main doctor literally - I mean literally - ran away from us without saying much of anything. We finally just left, not knowing what to think.

The next day my wife calls to check on Channing, and talks to the same nurse that was there during all of this the day before. The nurse proceeds to tell us that she argued with Channing's main doctor in the hallway for about 30 minutes after we left, and said, and I quote "I asked him why he's acting like this, that he's almost acting like he wants something to be wrong, why he would do that to these people, that if there had not been the initial finding of HPE from the CT scan that all of these issues he's trying to make into neuro issues would just be chalked up to prematurity, etc." To try to make it short, nobody at the hosptial, NOBODY, thinks she has any neurological issues now except for this one doctor. Now I kept asking myself, "are we just feeling this way because he's not telling us what we want to hear?", but we have had multiple nurses (including the charge nurse) tell us that they don't understand why this doctor is acting like this and it's NOT just us. One nurse told us that he told them "I just don't want them to get their hopes up." So you try to invent some other s**t that is supposedly wrong with her? What is there NOT to be hopeful about at this point, she doesn't have some horrific brain problem we thought she had/???

So, that leads me to what I said at the outset - I think we are about to fire us a doctor. The charge nurse asked us today if we wanted to sit down and talk with him about our frustrations or just get a new doctor, and I'm leaning toward just getting a new doctor. I don't know what it would accomplish to have a conversation with him if he is just going to try to justify himself to us even though he has zero medical proof at this point that would indicate any neurological issues. Let me say that I've always had a healthy respect for doctors and have never been one to not take them at their word when they tell me something. However, in this instance I feel like we are more than justified in being extremely frustrated/angry with this guy. I realize that doctors have to be pessimistic, but we don't need you to try to INVENT things that are supposedly wrong with her because your initial finding didn't prove to be correct.

Let me try to just sum this up by saying:

1)Channing is up to 5 lbs, 13 oz
2)The past two days she has eaten much better
3)Still breathing on her own without assistance, her breathing is perfect
4)her eyes and ears have been tested and she has passed both with flying colors
5)The developmentalist which sees her once a week (he is a doctor) has NEVER indicated a problem with her "eye tracking".
6)3 doctors (2 radiologists and one neurological specialist) have all said her brain appears normal, that there are no structural defects

This is not to say that she won't have some issues. She was born 3 months early, that goes with the territory. However, we now know that she does not have some horrific brain deformity. And we have a hell of a lot of hope, whereas before we had very little. I know this is rambling and poorly written, and I apologize...but it's been one hell of a last few days. Thanks again to all of you for your support. We hope that Channing will be coming home sometime in the next few weeks. I'll try to get some new pics up soon

[scotto]

And we have a hell of a lot of hope, whereas before we had very little...

That's great to hear.

[Clams]

Let me try to just sum this up by saying:

1)Channing is up to 5 lbs, 13 oz
2)The past two days she has eaten much better
3)Still breathing on her own without assistance, her breathing is perfect
4)her eyes and ears have been tested and she has passed both with flying colors
5)The developmentalist which sees her once a week (he is a doctor) has NEVER indicated a problem with her "eye tracking".
6)3 doctors (2 radiologists and one neurological specialist) have all said her brain appears normal, that there are no structural defects

So, apart from the BS involving the doctor, that all sounds pretty positive, mgsooner! Glad to hear it! Give Chandler a (very gentle) hug and kiss for us.

[GW in IA]

I'm so glad things are looking up for you guys!

Reading your post just makes me sick to my stomache. Of course I'm talking from a removed position, and I'm sure there are issuses on both sides that I have no idea about. But if you are in any possition to get a new Dr. I know I sure as hell would! At this point no matter what this guy says, your going to have a hard time beliving him. Its fair to be skeptical of any news, but there also has to be some trust as well, and I know I wouldn't be able trust his word. Weather you think he's hiding somthing, inventing somthing, or just plain inept, there would always be doubt.

God bless and good luck.

[mgsooner]

I'm so glad things are looking up for you guys!

Reading your post just makes me sick to my stomache. Of course I'm talking from a removed position, and I'm sure there are issuses on both sides that I have no idea about. But if you are in any possition to get a new Dr. I know I sure as hell would! At this point no matter what this guy says, your going to have a hard time beliving him. Its fair to be skeptical of any news, but there also has to be some trust as well, and I know I wouldn't be able trust his word. Weather you think he's hiding somthing, inventing somthing, or just plain inept, there would always be doubt.

God bless and good luck.

That is exactly my line of thinking. We really are not trying to be the people that just blame it on their doctor if he/she tells them something they don't to hear. I just don't understand why he seems to be so obsessed with their being something wrong with our daughter's brain after 1)we now have a normal brain scan, and 2)none of her clinical behavior screams neuro issues. Just do a Google search on "premature baby acid reflux" and see how many results you get. It is an extremely common problem. Yet he seems to be hell bent on making her eating issues neurological. As for the "tracking" issues, we have literally never heard this "concern" from him (or anyone) at the hospital before. As I said a developmentalist sees her once a week, every week. The nurse told us she went back through all of the developmentalist's notes just to be certain and he has NEVER mentioned a single thing about her not tracking properly. Yet 5 minutes after the neurologist tells us her brain scan is now normal he makes it a point to come in and tell us she's not tracking right? Really????

At this point there just really isn't any trust left, and I'm not sure how that's going to be rebuilt. Even if he came in today and told us that everything is wondeful and she has zero problems I would still doubt what he had to say.

[beantownbubba]

First second & third: That is great news, just wonderful, i am so happy for you guys!!!

Fourth: Fire that doctor. Yesterday. Don't even think about it. Everything you say above is correct and more than enough reason to do so.

Fifth: Insist, demand, do whatever is necessary to have a full meeting of ALL the doctors on Channing's case: your new primary care doctor, radiologists, head floor nurse (or the nurse designated as the head of Channing's team, depending on how the hospital does it), pediatrician/premie specialist, neurologist, developmental specialist, whomever. And do not leave the room until there is an agreed upon cogent, complete diagnosis and treatment plan THAT YOU UNDERSTAND and that makes sense to you. Have them go over "the pictures" with you until you understand what they show and what they mean. There is somebody at the hospital who can arrange this for you: could be a nurse, could be a social worker, could be one of the docs, but even if it takes going to the hospital president, DO IT. There is probably a "patient and family bill of rights" hanging on some wall near the entrance to the hospital. It should provide some guidance on who you should contact.

Sixth: Make a formal complaint to the hospital administration about this doctor - not necessarily about the misdiagnosis, but about the post- MRI events/inactions, statements and behavior. You may want to pursue it, you may not, but you'll want to submit it in a timely fashion when your memory is fresh. The mere fact that at least one nurse was so open about the goings on tells me that this isn't the first time this doctor has done something like this.

You don't have to have a thing against doctors to realize that they're human beings. That means, among other things, they make mistakes and they cover their asses. The issue is not "do those things happen" the issue is "what happens next?" And that's the part you can influence.

And again, let's focus on what's most important: The world has tilted right side up again. That's fanfuckingtastic. Take some time out to celebrate!!!!! I have a biz meeting "for drinks" this evening. The first one's for you guys!!!

[4sooner]

Incredible news mg!
And an incrdible roller coaster of emotions you guys must have been on.
I would echo btb's entire post. Unbelievable shit your family was forced to go through.
But bottom line: incredibly great news. Congrats!!

[mgsooner]

Thanks again everyone. We are really excited but trying not to get TOO hopeful. Unfortunately that's pretty easy to do now after the stunts that were pulled on Saturday.

BTB - that is excellent and helpful advice, thank you. We are leaning toward doing exactly what you suggested. We are going to discuss it again tonight and perhaps speak with some of the nursing staff at the hospital tonight.

[Beebs]

Thinking about you guys a lot MG. So glad to hear things are looking up for everybody. BTB knows of what he speaks.




Everybody together now....

CHANNING!
CHANNING!
CHANNING!
CHANNING!
CHANNING!
CHANNING!

[lajakesdad]

Awesome news MG. So happy for all of you. Get away from that doctor soon(er).

[The Black Canary]

That is wonderful news!!!! Go Channing !!!! btw an occasional pic would be greatly appreciated by her DBT family. You know how we love babies!!!

[Tequila Cowboy]

No words, smarter, kinder people than me here have said them all. So happy for you guys. Still in my thoughts daily.

[mgsooner]

One little tidbit before I go to bed. Because of her reflux/eating issues they decided to put her on Prilosec. Since she started the Prilosec on Saturday she has now taken her last 6 or 7 feedings without any problems whatsoever. Who knew Prilosec was such a wonder cure for neurological problems!? Couldn't resist one smartass comment.

Many times I have said to Channing "you're gonna show them all, aren't you?" Apparently she was listening to me, because she is. Good night folks, and I promise new pictures in the next day or two. Thanks again for all of your support, it has helped me more than you could know.

[littlemamma]

I was hoping Bubba would say everything I knew I couldn't but wanted to, MG.
CHANNING CHANNING CHANNING!!!!
I know it's not the most appropriate thing to whisper in a child's ear, but when Holly was in the hospital and we didn't know if she'd make it, I would tell her "You Fucking Fight!" and she did.
I think Channing has that fight too.
Go baby go!!!!

[Penny Lane]

wow just read that mgsooner...i'll keep you all in my thoughts!
X3 what BTB said, too...sounds like progress to me !

[njMark]

Best wishes for your family MG, you seem amazingly strong to me for handling all those ups and downs without completely losing your shit. I know how hard it is on me when my son gets hurt or even his shots at the docs office, all of which are not nearly as scary, I guess that's the word, as going through what you and your family have. Keep your heads up and love that little angel as much as you can, which I am sure goes without saying.

[pearlysnaps]

MG, reading about the hope for Channing has brought tears to my eyes. I am so glad to hear she is doing so well and is putting the weight on.That is just wonderful news! My fingers (and toes) are crossed for you that the good news just keeps rolling in.

That being said, I am a bit more emotional these days, too. Some folks may have noticed I haven't been around for a couple of weeks...well, Mrs. 'Snaps was admitted to the hospital on Feb. 10 due to pregnancy complications and ended up delivering via emergency C-section on the 11th. Later we were told if they hadn't acted quickly, the Mrs. would have suffered liver failure and the little dude would have been in great danger as well. But, my boy Buck arrived 6 weeks early weighing almost 5 lbs. He was shipped to the NICU and he was just a champ in there. Off CPAP in a day and a half, off of feeding tube in 3 or 4 days and out of the incubator in 5. He came home on day 8 and is just doing awesome.

The spectrum from worst-case scenario to best-case was pretty wide and I can say that it really is best-case right now and I feel like the luckiest dude alive. I can empathize with folks who have had major life-threatening health problems and come out well. I was one wrong decision from having my life demolished and now I am blessed with a wife who is doing great and a perfect baby boy. Well, I do worry about his hearing...when I sing to him in my sorry-ass voice, he calms down. His current favorite tunes are "Bulldozers & Dirt" and Buck Owens' "Under Your Spell."

MG, I am very very fortunate that we were at a great hospital and NICU and the doctors we had were great. If you are having problems, ditch that shithead and find someone better.

And as for the whirlwind of the past couple weeks, sure, I missed the Bowery show, but regardless, it is fucking great to be alive!

We named him Buck after my gramps's nickname. That name was so ingrained that no one even knew his name was John. ...

Well, ladies and gentlemen, let me introduce you to Buck:

[Clams]

Fuckin' A, Pearly! He's a good looking dude. Congrats to you and the Mrs.

Enjoy the next few weeks and months, it's quite a ride!

[beantownbubba]

Welcome, Buck! Great news pearlysnaps!! Don't know if this is your first, but if it is, you got a quick introduction to fact of life #1: It's never easy.

But it's oh so worth it, so enjoy every minute!!

PS to mgsooner: you owe us a pic or 3. Hope all is well.

[pearlysnaps]

Welcome, Buck! Great news pearlysnaps!! Don't know if this is your first, but if it is, you got a quick introduction to fact of life #1: It's never easy.

But it's oh so worth it, so enjoy every minute!!

Thanks BTB & Clams. Yeah, this is our first and it certainly hasn't been easy, especially since we were caught unprepared (the Mrs. shower was scheduled for the next day), so I've been going 100 miles per hour pretty much since then to try and get things settled in. It hasn't been easy, but I've never do anything so gratifying in my life.

[Penny Lane]

Pearly!! I wondered what happened because I hadn't heard other than before the Bowery Show. Congratulations! Sounds like it's been a rollercoaster.
Buck's a great name and he's so precious. Tell your wife the NC says, GOOD JOB! He's beautiful....for a little alien like thing...
So happy for you two, you three I mean.