Help - I think I'm a plagio mom and I'm scared!

[Guest guest]

Hi - I'm Nikki and our 7 month old son, Chase, is such a little

trooper. He's our first non-furry child (we have 2 dogs and a cat)

and the joy of our lives. He has had such a rocky beginning, but

you'd never tell from his amazing outgoing personality.

He was a full-term baby (although he was a vacuum birth - he had a

big old head for my small pelvis). I thought being readmitted for

jaundice at five days old was horrible, but while he was there, our

ped. caught a heart murmur. The jaundice was a blessing in

disguise. Chase needed closed heart surgery when he was just 12 days

old for a coarctation (an aortic valve was too narrow). He was home

on day 19 and other than repeated visits to our cardiologist, the

small scar on his back is all that is left of that problem.

At our follow-up after heart surgery at three weeks, our ped.

detected a fibroid mastiosis coli (torticollis). He's been in PT

since he was 6 weeks old (every week at first, but every other week

since Feb.). I was warned about the DOC band then, but his head was

pretty round, so none of us worried too much.

By four months, he had some definite flatness on the right posterior

side. Around this time, we also were hospitalized for six days with

endocartitis (a bacterial infection of the heart). He came home with

a PICC line and I had to administer medicine 2xs a day for 28 days.

This set us back with the PT and tort and his mild eczema now turned

so severe that we needed to see a dermatologist. Once the meds

stopped, his skin got better (with the help of prescription

hydrocortisone and Aquaphor, plus daily baths) and his neck once

again started to improve. He also learned to roll on to his stomach

(constant tummy time since he was four weeks old had to help) and

started to sleep that way.

His flat spot in back is almost gone, but thanks to three months of

stomach sleeping and still some major tort issues, he's now

developing a flat spot on the left side of his forehead. Both our

ped and PT have referred us to a plastic surgeon (we have an

appointment in three weeks for a consult). Our wonderful ped. who

catches everything told me " maybe he won't need a helmet. " As I just

smiled at her, she added, " of course, the odds aren't in our favor,

but you never know. " This is the doctor I've been dreading since he

was six weeks old.

If you saw Chase and didn't know any of the above, you'd think he was

the cutest baby ever. Friends, co-workers, church members and family

all know most (if not all) of his history, so I am forever giving

doctor updates to the very thoughtful and concerned masses. However,

I'm terrified about the stares and rude questions we'll get if Chase

does indeed need a band - you can't hide that like a scar.

My husband's theory is whatever is best for Chase is all that matters

(and thankfully until now, insurance has been really good). While I

completely agree, I just have days where I feel that enough is

enough. We've been through so much but a new mom can only take so

much. I just so want Chase to be like all of the other babies (he's

never been in a swing or a bouncy seat). I know all of these issues

have made us more appreciative of the little things and we're blessed

that he is always in such terrific spirits. I know he'll be fine

(and my husband, the football coach, already has ideas about

decorating a cool helmet) - right now, I'm worried about how I will

do with it. How do you all do it?

With Mother's Day yesterday, I got a lot of cards and comments about

all I've been through and how strong of a person I am, but as we get

closer to the plastic surgeon visit - I don't feel strong - I feel

scared! After a textbook perfect pregnancy (and waiting 34 years to

have a baby), I wasn't prepared for any of this. While I've learned

to cope, it's still so hard. I'm home (after 12 years of teaching

8th graders - this was a huge, but enjoyable, change), so I have to

deal with the doctors more than my husband (who goes to visits when

he can) and days like today, I just feel so helpless!

Sorry to be so wordy on my first post - but ANY words of wisdom would

be so helpful! I wouldn't trade Chase for all of the stars in the

sky, but something simple like an ear infection would be a nice

change of pace

Nikki

[Guest guest]

Nikki, I'm so sorry. Goodness, you sure have had your fair share of obstacles to overcome with Chase. I don't really have any sage advice, but you'll find everyone here to be helpful and answer questions along the way.

My son has only had his band for a few weeks and we knew when he was only a few days old he had tort. And by three weeks the plagio was quite obvious. While it did get better with aggressive repo, it's still not nice and round. Anyway, dealing with a helmet does get easier. But you just do it, you deal with it as best as you can.

Best of luck and keep us posted.

Amy (SC)

Liam - 6 mos. - STARband 4/26/06

On 5/15/06, nloomos <nloomos@...> wrote:

Hi - I'm Nikki and our 7 month old son, Chase, is such a little trooper. He's our first non-furry child (we have 2 dogs and a cat) and the joy of our lives. He has had such a rocky beginning, but you'd never tell from his amazing outgoing personality.

He was a full-term baby (although he was a vacuum birth - he had a big old head for my small pelvis). I thought being readmitted for jaundice at five days old was horrible, but while he was there, our

ped. caught a heart murmur. The jaundice was a blessing in disguise. Chase needed closed heart surgery when he was just 12 days old for a coarctation (an aortic valve was too narrow). He was home on day 19 and other than repeated visits to our cardiologist, the small scar on his back is all that is left of that problem.At our follow-up after heart surgery at three weeks, our ped. detected a fibroid mastiosis coli (torticollis). He's been in PT since he was 6 weeks old (every week at first, but every other week since Feb.). I was warned about the DOC band then, but his head was pretty round, so none of us worried too much.By four months, he had some definite flatness on the right posterior side. Around this time, we also were hospitalized for six days with endocartitis (a bacterial infection of the heart). He came home with a PICC line and I had to administer medicine 2xs a day for 28 days. This set us back with the PT and tort and his mild eczema now turned

so severe that we needed to see a dermatologist. Once the meds stopped, his skin got better (with the help of prescription hydrocortisone and Aquaphor, plus daily baths) and his neck once again started to improve. He also learned to roll on to his stomach (constant tummy time since he was four weeks old had to help) and started to sleep that way.His flat spot in back is almost gone, but thanks to three months of stomach sleeping and still some major tort issues, he's now developing a flat spot on the left side of his forehead. Both our ped and PT have referred us to a plastic surgeon (we have an appointment in three weeks for a consult). Our wonderful ped. who catches everything told me " maybe he won't need a helmet. " As I just smiled at her, she added, " of course, the odds aren't in our favor, but you never know. " This is the doctor I've been dreading since he was six weeks old.If you saw Chase and didn't know any of the above, you'd think he was the cutest baby ever. Friends, co-workers, church members and family all know most (if not all) of his history, so I am forever giving doctor updates to the very thoughtful and concerned masses. However,

I'm terrified about the stares and rude questions we'll get if Chase does indeed need a band - you can't hide that like a scar.My husband's theory is whatever is best for Chase is all that matters (and thankfully until now, insurance has been really good). While I completely agree, I just have days where I feel that enough is enough. We've been through so much but a new mom can only take so much. I just so want Chase to be like all of the other babies (he's never been in a swing or a bouncy seat). I know all of these issues have made us more appreciative of the little things and we're blessed that he is always in such terrific spirits. I know he'll be fine (and my husband, the football coach, already has ideas about decorating a cool helmet) - right now, I'm worried about how I will do with it. How do you all do it?With Mother's Day yesterday, I got a lot of cards and comments about all I've been through and how strong of a person I am, but as we get closer to the plastic surgeon visit - I don't feel strong - I feel scared! After a textbook perfect pregnancy (and waiting 34 years to have a baby), I wasn't prepared for any of this. While I've learned to cope, it's still so hard. I'm home (after 12 years of teaching

8th graders - this was a huge, but enjoyable, change), so I have to deal with the doctors more than my husband (who goes to visits when he can) and days like today, I just feel so helpless!Sorry to be so wordy on my first post - but ANY words of wisdom would be so helpful! I wouldn't trade Chase for all of the stars in the sky, but something simple like an ear infection would be a nice change of pace :)NikkiFor more plagio info