Re:UPDATE ON AUTUMN AND HER SIS SUMMER

[Guest guest]

Hi All. I havn't been able to post in a long time, our computer

finally got everything working just this afternoon, it was one problem

after another, so finally, I am back on line.

Summer is doing much better now. She left the NICU after a week and

ended up gaining some weight so didn't need tube feeds. She was

diagnosed with malacia... tracheal and linguo..or..something malacia (I

can now research it online)and takes Zantac. The docs also said she has

a small lower jaw which makes it harder on her with nursing. A few

days after we were home she had not gained any weight since the

hospital so her doc gave her some neosure and I reluctantly tried it.

she took the bottle fine but the neosure really aggrivated her reflux,

it flew about 4 feet across the room, no exagerations, not only that

but the reflux was thicker. She struggled more. Well, the next day

she had a severe choking episode from her reflux and struggled for what

seemed like eternitiy to either swallow or get out this reflux that was

stuck. She began to turn blue after a while and it got worse...I ran

her into the kitchen to the table in case she passed out and her

airways opened and she needed cpr.....fortunatley, she made it through

and a little shot out her nose and the rest went down and she got her

color back, never less the docs wanted her back in the hospital to be

monitored and also for weight gain. I have seen choking reflux

epiosodes with my other kids, but this surpassed all and any things I

have seen, it wasn't just a little struggle, it was horrible...

anyways, I worked really hard with her with the feeding and we finally

have it down (she didn't take more from a bottle than breastfeeding, so

that didn't work). She went home the next day and I was given a little

more time to get her to gain because she hadn't lost any and she was

already back to her birthweight. Well, she is now gaining well and

nursing well, still has spells with feeding but with positioning and

controlling feedings, she is doing well, still not on the charts but at

6 weeks is 6 lbs 11 oz and 18 3/4 inches (4 lbs 13 oz and 17.5 inches

at birth) She has not shown signs of 'catch up' but she is

maintaining, so time will tell. She has been doing about 1 oz a day

which is great! It's just that there is so much similarity to Autumn.

By the way, Autumn is doing really well. 19 mos now and lingering at

17.5 lbs and 29 inches. She got her ears pierced and loves to wear

necklaces and bracelets and dresses. She just grew into size 3 shoes

and loves to wear them all the time. She also uses her girly

manipulation tactics with her older bros Skye and Ocean and her Dad.

She just gives them her little wimper and looks at them with her big

blue eyes with super long lashes, and she gets anything. I just roll

my eyes. She loves Summer and had never kissed anyone before until

Summmer came home from the hospital, then she kissed her forhead all on

her own! She kissed her all the time! After a couple of weeks, we got

to to finally kiss us! I am hoping next year to make it to the

convention.

Also want to mention, the genetisist Autumn sees wants to follow up

with Summer. She has the duplicate curved pinky, small jaw, reflux and

feeding problems born SGA and IUGR....I'm not feeling RSS though. She

doesn't look it, at least not yet, Autumn didn't until a little later

because she was proportionate IUGR like Summer and her head was really

tiny and a circle until it began to grow and change shape when she was

out. I guess it all depends on if Summer has catch up growth. If she

doesn't then I will be really interested in the genetic factor of this

growth thing because this is not something that other family members

have had with their kids....although, come to think of it my husbands

cousin has a daughter who was born iugr at about 3 lbs and is now 22

mos and 19 lbs.......don't know them though or any details.

mom to Autumn 19 mos RSS, Summer 6 weeks, Skye 7, Ocean 3

> Hi I am hoping this will post, have had a lot of trouble posting have

> tried a few times over last couple of days. She has been diagnosed

> with reflux and malacia and now she is struggling to gain weight

> because her feeds are so difficult for her. Theya re talking tube in

> the nose or pumped milk (she is breasfed) with added stuff in

it...not

> sure which to do. She gets so worn our from feeds she can't maintain

> them...hopefully will be home in a couple of days, will keep you

> updateda as I can. Only one post I have tried has gone through so I

am

> keeping my fingers crossed this will too. Thanks for everything.

>

>

[Guest guest]

I am so happy Summer is home with you.

B

anderkat3 wrote:

Hi All. I havn't been able to post in a long time, our computer

finally got everything working just this afternoon, it was one problem

after another, so finally, I am back on line.

Summer is doing much better now. She left the NICU after a week and

ended up gaining some weight so didn't need tube feeds. She was

diagnosed with malacia... tracheal and linguo..or..something malacia (I

can now research it online)and takes Zantac. The docs also said she has

a small lower jaw which makes it harder on her with nursing. A few

days after we were home she had not gained any weight since the

hospital so her doc gave her some neosure and I reluctantly tried it.

she took the bottle fine but the neosure really aggrivated her reflux,

it flew about 4 feet across the room, no exagerations, not only that

but the reflux was thicker. She struggled more. Well, the next day

she had a severe choking episode from her reflux and struggled for what

seemed like eternitiy to either swallow or get out this reflux that was

stuck. She began to turn blue after a while and it got worse...I ran

her into the kitchen to the table in case she passed out and her

airways opened and she needed cpr.....fortunatley, she made it through

and a little shot out her nose and the rest went down and she got her

color back, never less the docs wanted her back in the hospital to be

monitored and also for weight gain. I have seen choking reflux

epiosodes with my other kids, but this surpassed all and any things I

have seen, it wasn't just a little struggle, it was horrible...

anyways, I worked really hard with her with the feeding and we finally

have it down (she didn't take more from a bottle than breastfeeding, so

that didn't work). She went home the next day and I was given a little

more time to get her to gain because she hadn't lost any and she was

already back to her birthweight. Well, she is now gaining well and

nursing well, still has spells with feeding but with positioning and

controlling feedings, she is doing well, still not on the charts but at

6 weeks is 6 lbs 11 oz and 18 3/4 inches (4 lbs 13 oz and 17.5 inches

at birth) She has not shown signs of 'catch up' but she is

maintaining, so time will tell. She has been doing about 1 oz a day

which is great! It's just that there is so much similarity to Autumn.

By the way, Autumn is doing really well. 19 mos now and lingering at

17.5 lbs and 29 inches. She got her ears pierced and loves to wear

necklaces and bracelets and dresses. She just grew into size 3 shoes

and loves to wear them all the time. She also uses her girly

manipulation tactics with her older bros Skye and Ocean and her Dad.

She just gives them her little wimper and looks at them with her big

blue eyes with super long lashes, and she gets anything. I just roll

my eyes. She loves Summer and had never kissed anyone before until

Summmer came home from the hospital, then she kissed her forhead all on

her own! She kissed her all the time! After a couple of weeks, we got

to to finally kiss us! I am hoping next year to make it to the

convention.

Also want to mention, the genetisist Autumn sees wants to follow up

with Summer. She has the duplicate curved pinky, small jaw, reflux and

feeding problems born SGA and IUGR....I'm not feeling RSS though. She

doesn't look it, at least not yet, Autumn didn't until a little later

because she was proportionate IUGR like Summer and her head was really

tiny and a circle until it began to grow and change shape when she was

out. I guess it all depends on if Summer has catch up growth. If she

doesn't then I will be really interested in the genetic factor of this

growth thing because this is not something that other family members

have had with their kids....although, come to think of it my husbands

cousin has a daughter who was born iugr at about 3 lbs and is now 22

mos and 19 lbs.......don't know them though or any details.

mom to Autumn 19 mos RSS, Summer 6 weeks, Skye 7, Ocean 3

> Hi I am hoping this will post, have had a lot of trouble posting have

> tried a few times over last couple of days. She has been diagnosed

> with reflux and malacia and now she is struggling to gain weight

> because her feeds are so difficult for her. Theya re talking tube in

> the nose or pumped milk (she is breasfed) with added stuff in

it...not

> sure which to do. She gets so worn our from feeds she can't maintain

> them...hopefully will be home in a couple of days, will keep you

> updateda as I can. Only one post I have tried has gone through so I

am

> keeping my fingers crossed this will too. Thanks for everything.

>

>