Hey there, first off, everyone is going to have their own opinions...especially when it comes to difficult issues regarding our baby's health.  I think others place judgement when they need to feel secure about their own personal decisions...what is right for one family is not right for all (in my opinion!).  That said, I don't even know what HGH stands for...and it was an insanely difficult decision to have the G-tube surgery...I am basically 'anti-intervention' as a rule, unfortunately, Henry had/has reluctance to eat a sufficient amount without assistance.  Although the tube felt extremely invasive at the time, all the research I did led us to our choice to go ahead with the surgery.  As for the diagnosis, being reversed, etc...oh, and the running away thing...yeah, I've thought about that too...but, ultimately, (and I'm sure you already know this), who care's what others say, label, etc?  In some ways I would love to have a clear diagnosis just to be able to connect with other families and exchange stories, etc.  Also, I think it would help some of Henry's doctors to relax a bit (as far as the weight thing goes...) since Noonan's and many other syndromes expect the super slow weight gain.  I find myself going back and forth, almost daily, about my interest in all the syndrome stuff...somedays I just think, UGH!  Enough with all the info!  I just want to simply raise my baby like I raised my other baby...without so many questions unanswered!  But then, my other baby didn't have heart issues, a feeding tube, low muscle tone, etc, etc.  Who knows?!  OH!  Does HGH stand for growth hormones?  I don't know much about them, I've heard/read a bit...honestly, the idea of adding hormones seems too 'new' to me...I guess I'd like to see some more time pass with conclusive data before going that route.  Good luck, Madeline

maria <artononyx@...> wrote:

First let me say that I am glad to have people to talk to about this.

I belong to a few preemie groups.  I had one person berate me cause I
don't want to go to the GI.  (I think they take some offense since
their child has a tube)  He said I should do what's best for Logan not
what is easiest for me.  I also told him I would rather look at HGH if
needed rather than a tube.  He said HGH is more invasive.  (huh??? you
don't cut open a body for HGH)

Logan is gaining.  He was 3# 9 oz at birth and dropped below 3# before
he began to gain.  He now at 13/10 adjusted months is over 12# 8 oz. 
He did have a set back in weight gain when he got thrown out of whack
when we were packing and moved and almost completely stopped eating
his baby food.  He seems like he is getting back on track with weight
gain.  The ped is happy with his growth.  Also the ped has said (as
well as all the research I have done regarding pulmonic stenosis) that
his heart condition can really impact his growth.  The ped told me
that unless he starts to really fall off of HIS curve; we should wait
until he is bigger to repair his heart.

So my question(s) about this is...
Am I wrong to want to wait and see how he grows? 
Am I a bad mom (as this person I mentioned above made me feel) cause I
don't want a tube? 
What about HGH?  Has anyone gone either the route of tube and then
HGH?  Or has anyone opted for HGH instead of the tube? 
How many of you just let your kids grow at their own pace and love
them for who and what they are?  (that is what I want to do... I love
Logan as is... I am small; my family is small .. why would I love him
less if he is small?)
How do I get over wanting to grab Logan; pack our things; and just
leave ... go where noone knows us and just raise him and love him???
One last one ... has anyone ever had the DX reversed somewhere down
the line?

Please help me with this.
Maria