INTRODUCTION

November 7, 2000

welcome Jen, I am so glad you found this list, there are some very

knowledgeable women on this list, and they are very helpful. I am so glad

you found us:-)

beckie and Mikayla 2/17/00

>

>Reply-To: breastfeeding (AT) e

>To: breastfeeding (AT) e>

>Subject: introduction

>Date: Tue, 7 Nov 2000 16:29:19 -0800

>

>hi, my name is jenn j, i've got a almost 8 week old son, dorian. i never

>breastfed, and decided to try and relactate (after getting a wake up call

>of

>him latched on one night, you take a hint lol) and it's going very slowly.

>

>this list was recommended to me by someone else, and she said you guys

>might

>be of some help, so i hope!

>

>i am pumping and doing the fenugreek thing. i also had it recommended i

>drink non-alcoholic beer and metamucil, but i don't know about that just

>yet.

>

>anyway, hi!

>

>jenn j

>

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December 23, 2000

Welcome! I'm Dawn, mum to 3yo Ibrahim (nursed 18 months), Elijah (nursed

6 months) and Ethan - 4 months on Monday, heart problems with multiple

complications. Determined to nurse until after his surgery and recovery

- minimum of 2 years.

About your ....list....Thrush - careful what homeopathic remedies you use

as some can contain extra electrolytes (such has the baking sode and

water rememdy) and that isn't good for baby. Have doctor prescribe

Nystatin, use a cotton swab and rub it all over her mouth and your

nipples and sterilize anything else that goes in her mouth

(pacifiers....bottles...)

2) Every hour. Yep, normal. Establishing a milk supply,. comfort

sucking, etc.... It won't last forever, a few more weeks and you'll

notice not as often nursing. Maybe think about a pacifier if hourly

nursing isn't convienent. as a mommy of 3 (a SINGLE mommy of 3, under 3

eyars) I depend on the paci!

3) Choking, you likely have a strong letdown. Perhaps pump for a few

minutes before nursing, to get the hard letdown, slow the milk you know.

That means that she should get the foremilk in a bottle though. Both the

fore and hind milk is needed to make digestion of the milk easier. The

choking will end soon, too, once your milk is firmly established.

4) Take a tablespoon of milk and spill it on the table. Looks like alot

huh? Reflux is a painful process for a baby, reflux is excessive

spitting up causing baby to not gain as much, the acid can burn the

esophageous, etc....ALL babies spit up, some more than others. If baby

isn't bothered by it - just invest in stock for bibs!

5) Nursing in public? loose modesty by walking around topless and/or

with your shirt unbuttoned. Carry the baby hap-hazardly on your hip, or

dangling by an arm. Mis match your shoes and put eye makeup on only one

eye. Hair un washed in a ponytail. People will avoid eye contact with

you and not even care that you're nursing!

Seriously? Practice, practice PRACTICE! A button up shirt - you can

undo just 1 or 2 middle buttons, and viola! A loose shirt can hang over

the baby's face. Or you can use a blanket. Or you can be like me (a

public nurser for nearly 4 years now) and just let it all hand out

staring at anyone who stares at you. And if a man makes a comment, ask

in a sickly-sweet voice if he got a good look. How else could he know

what you were doing if he didn't LOOK?

In a mood tonight...heh heh heh

***************************

Dawn - Loving Mum to:

Ethan Adnan (35-weeker, 8-25-00, s/p-VSD w/AR, ASD, CHF, PH)

Elijah Iman (7-2-99, developmentally delayed) and Ibrahim Jerry (9-10-97)

On Sat, 23 Dec 2000 20:31:27 -0500 " LoriEdelen " LoriEdelen@...>

writes:

>

> Happy Holidays Everyone! My name is Lori, I have a 3 week old and a

> 2 year old and a 26 year old dh. I tried nursing with my 2 year old

> and I gave up after 3 weeks because he was not gaining enough

> weight. He wound up being allergic to milk and had a lot of food

> allergies. I am really determined to make a go of nursing this

> time. I even went out and bought the medela pump-in-style. I am

> having some problems though and am looking for a lot of support.

> Here is my list:

> 1. Baby and I have thrush {OUCH!!}

> 2. Baby sometimes wants to nurse every hour {is this normal?}

> 3. Baby seems to choke a lot {again, normal?}

> 4. After baby eats for about 5-10 minutes he sometimes spits it it

> right back up {reflux maybe?}

> 5. Advice on nursing in public

>

> I sure hope someone can help me on these issues and I get to make

> some new friends in the process. Thanks in advance!

> Lori Edelen

> Web Application Developer

> Lattestone.com

***************************

Dawn - Loving Mum to:

Ethan Adnan (35-weeker, 8-25-00, s/p-VSD w/AR, ASD, CHF, PH)

Elijah Iman (7-2-99, developmentally delayed) and Ibrahim Jerry (9-10-97)

________________________________________________________________

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December 24, 2000

<<5) Nursing in public? loose modesty by walking around topless and/or

with your shirt unbuttoned. Carry the baby hap-hazardly on your hip, or

dangling by an arm. Mis match your shoes and put eye makeup on only one

eye. Hair un washed in a ponytail. People will avoid eye contact with

you and not even care that you're nursing!>>

LOL!! That totally cracked me up!!!

<

>

I always just wore a reg t-shirt (no buttons) and lifted the bottom..it was

more convenient for me and the shirt hangs aroudn the babys face and their

body covers any remaining skin you MIGHT have showing! I can't tell you the

number of people who have come up while I've been nursing to talk or play

with the baby and not realised what I was doing!! (until he refused to move

LOL) Nursing shirts are great too if you aren't comfortable..invest in 1 or

2 and see how you like them! (try second hand stores so you don't spend too

much money!)

(Oct 8/98)

EDD 06/17/01

January 16, 2001

Hello, and all!

What a coincidence! I'm new to the group and also due in May. I also experienced much trouble breastfeeding my first, Claire, born 02-06-99. I joined this group on my sister's recommendation to find support. I am much more determined and informed this time. I am also looking forward to the advice and support I hope to find with this group.

R.Get your FREE download of MSN Explorer at http://explorer.msn.com

January 16, 2001

>I joined this group on my sister's recommendation to find support.

Hey you guys-this lady is awesome!!! She's my sissy! I couldn't

help but have her come here because you guys have really helped me be

way more successful this time around!

Love,

Mommy to since 10-5-98 and Cameron since 8-10-00

jackpot@...

http://users.pld.com/jackpot/kidspage/kids.html

January 30, 2001

<

>

I hope this isn't an American list! (I'm Canadian!)

Welcome aboard!

(Oct 8/98) - My nursling

EDD 06/10/01 - It's a Boy!

March 9, 2002

We have been to a pediatric ENT and they will put him under general anesthesia after he's two-months to do an ABR test (I have no idea what that is, except for a hearing test) and possibly a CT scan.

Hi and welcome!

I just wanted to say that my son had an ABR test when he was 8 weeks old also. I scheduled the test around the time he would be taking a feeding and a nap. I held him on my lap gave him a bottle and a couple of minutes he was sound asleep-- no meds at all. The test is very short and not really bothersome, its just that they need to hold still.

(Of course if they feel the CT scan is necessary now, than he would need sedation anyway).

Jean ('s mom)

March 9, 2002

Hi Christie,

Welcome to the group! Thought I'd just let you know my 8 month old son Conor has

unilateral microtia and atresia to his right ear. It sounds a lot like '

ear. Conor has a lobe at the bottom and what looks like the start of the curve

at the top and the middle part of his ear just looks like it is folded over and

stuck down. He has no visible ear canal. Also he has a small, what I think is, a

skin tag in front of his ear - it's just like a small bump (like a big spot of

skin) that sticks out.

Conor has had hearing tests and he has hearing loss in his microtic ear but

normal in his other ear. Like you, in the early days before the hearing tests I

found it difficult to know if Conor had normal hearing as he seemed to startle

at some sounds but not others - eg the phone would wake him up but you could

make a loud bang beside him and he would not startle. It's difficult to know

with young babies I think.

Before I found this group and found out what his ear condition is called (I

found out by searching ear defect on the internet that his condition is called

micorita & atresia!!) that because I knew so little about it that when the

doctors asked had we any questions we just looked blankly at them because we did

not know enough about it to asked any informed questions. Now I know more about

microtia & atresia I have lots of questions lined up to ask at Conors next

appointment! At our last visit to the ENT I mentioned the medpor synthetic

implant that is used in USA (we live in Ireland) and our ENT did not seem to

know anything about it and went on to talk about prosthetic ears as the only

other option to rib cartlidge method. Therefore the next time I go I will be

armed with printouts from websites about this method! Also, Conor has never had

a heart check and without this group I would never know that he should have

done, so that's on my list for the next visit to the paediatrician - I asked my

GP about it and she said it's too specialised for her and to ask the

paediatrician. I'm finding it helps to know your stuff before you go in for any

medical appointments and you'll find this group a wealth of information. I know

it's sometimes hard to read about the 'what if's' but it really helps to be

informed and aware of these things and if your child does not have them, it

makes you aware that there is always somebody worse off.

Take Care

Leigh

AtresiaMicrotia wrote:

<

< ------=_NextPart_000_0092_01C1C6BA.F9D6B8A0

< Content-Type: text/plain;

< charset= " iso-8859-1 "

< Content-Transfer-Encoding: 7bit

<

< Hi Everyone!

<

< I guess I wanted to officially come out of " lurkdom " and let you all know

< I'm here...and a little overwhelmed! What a great wealth of knowledge you

< all are.

<

< My name is Christie and I have a 4-week-old son, , that has Aural

< Atresia Microtia. His left ear has a lobe and just looks like the top part

< of the ear got folded over and grew to his head and his right ear is what I

< think you all refer to as a " teeny? " ear. We aren't sure yet if he is

< hearing out of that ear. At the hospital where he was born (a local county

< hospital) he failed the hearing test, but for the last couple of weeks I've

< noticed him startling some at loud noises. We have been to a pediatric ENT

< and they will put him under general anesthesia after he's two-months to do

< an ABR test (I have no idea what that is, except for a hearing test) and

< possibly a CT scan. This coming Monday his regular pediatrician has

< scheduled an ultrasound to check his kidneys. Does it sound like we're on

< the right track for this?

<

< To be honest, I haven't researched this too much yet. I found a couple of

< websites and read a little, but I got too overwhelmed and started worrying

< too much about the " what if's. " I think I'm ready to start learning

< everything I can now and I guess I'm coming to all of you for any

< advice/help you care to offer. Are there any websites out there that would

< be a good place to start? Just from reading some of your emails I am

< wondering what HFM is and also Treacher ? Also, is Microtia part of

< this defect, or is Microtia something else (I know that is a silly question,

< but I've seen this referred to just as Aural Atresia, and then other times

< Aural Atresia Microtia).

<

< We had to his one-month appointment today and the pediatrician also

< noticed that one side of his tongue when he cries comes up more than the

< other. He wants us ask the ENT about this when we saw him next, but do any

< of you know if this is an indication of something else wrong?

<

< Oh, the pediatric ENT we are seeing is at the Children's Hospital in

< Columbus, OH, so if any of you know anything about them, I'd love to hear

< about it!

<

< Thank you,

<

< Christie, mommy to Zachary (2 years) and (4 weeks)

<

< ------=_NextPart_000_0092_01C1C6BA.F9D6B8A0

< Content-Type: text/html; charset=US-ASCII

< Content-Transfer-Encoding: 7bit

<

< Hi

< Everyone!

<

< I

< guess I wanted to officially come out of " lurkdom " and let you all know I'm

< here...and a little overwhelmed! What a great wealth of knowledge you all

< are.

<

< My

< name is Christie and I have a 4-week-old son, , that has Aural

Atresia

< Microtia. His left ear has a lobe and just looks like the top part of

< the ear got folded over and grew to his head and his right ear is what I

< think you all refer to as a " teeny? " ear. We aren't sure yet if he is

< hearing out of that ear. At the hospital where he was born (a local county

< hospital) he failed the hearing test, but for the last couple of weeks I've

< noticed him startling some at loud noises. We have been to a pediatric ENT

< and they will put him under general anesthesia after he's two-months to do an

< ABR test (I have no idea what that is, except for a hearing test) and

possibly a

< CT scan. This coming Monday his regular pediatrician has scheduled an

< ultrasound to check his kidneys. Does it sound like we're on the right

< track for this?

<

< To

be

< honest, I haven't researched this too much yet. I found a couple of

< websites and read a little, but I got too overwhelmed and started worrying

too

< much about the " what if's. " I think I'm ready to start learning everything

< I can now and I guess I'm coming to all of you for any advice/help you care

to

< offer. Are there any websites out there that would be a good place to

< start? Just from reading some of your emails I am wondering what HFM is

< and also Treacher ? Also, is Microtia part of this defect, or is

< Microtia something else (I know that is a silly question, but I've seen this

< referred to just as Aural Atresia, and then other times Aural Atresia

< Microtia).

<

< We

had

< to his one-month appointment today and the pediatrician also noticed

< that one side of his tongue when he cries comes up more than the other. He

< wants us ask the ENT about this when we saw him next, but do any of you

< know if this is an indication of something else wrong?

<

< Oh,

< the pediatric ENT we are seeing is at the Children's Hospital in Columbus,

OH,

< so if any of you know anything about them, I'd love to hear about

< it!

<

< Thank

< you,

<

< Christie, mommy to Zachary (2 years) and (4

< weeks)

<

< Yahoo! Groups

Sponsor

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<

June 9, 2002

I meant to reply to your first paragraph--for two

months, my husband has been walking around saying,

" Two 3-year-olds! What we were thinking!? "

Pamela

--- beth Boucher Heyboucher@...> wrote:

>

> Hi Pamela and Rich,

>

> Welcome to the group! Whew, you make me tired just

> talking about having two

> 3-year olds - bless you!

>

> I don't have any experience with the BAHA's, except

> that I think they are

> very beneficial. You may want to consult with some

> reconstruction surgeons

> to discuss any drawbacks a BAHA may cause to future

> reconstructions.

>

> Love, beth

>

> >From: Pamela and Rich Stockwell

> pandrstockwell@...>

> >Reply-To: AtresiaMicrotia

> >To: AtresiaMicrotia

> >Subject: Introduction

> >Date: Sat, 8 Jun 2002 13:43:49 -0700 (PDT)

> >

> >Hi! Another new member here!

> >

> >We are Pamela and Rich Stockwell. On April 2, we

> >adopted a little boy from China who will be three

> on

> >June 25. Connor has bilateral atresia and microtia.

> We

> >just found out he is NOT a good candidate for the

> >surgery to open up his ear canals, so we are

> looking

> >into BAHAs. Does anyone on the list have any

> >experience with these? I plan to look at the

> archives

> >later, but with two preschoolers (we have a

> daughter

> >who just turned 3 last week!) I have very limited

> >computer time!

> >

> >I look forward to being a part of this list and

> >learning from other parents who have children with

> >this condition!

> >

> >Thanks,

> >

> >Pamela and Rich

> >

> >__________________________________________________

> >

June 9, 2002

Hi Pamela and Rich,

Congratualtions on your new son!

My daughter is 5 and got a BAHA last year. Please feel free to

ask any questions about BAHAs here or e-mail me privately.

('s Mom)

> Hi! Another new member here!

>

> We are Pamela and Rich Stockwell. On April 2, we

> adopted a little boy from China who will be three on

> June 25. Connor has bilateral atresia and microtia. We

> just found out he is NOT a good candidate for the

> surgery to open up his ear canals, so we are looking

> into BAHAs. Does anyone on the list have any

> experience with these? I plan to look at the archives

> later, but with two preschoolers (we have a daughter

> who just turned 3 last week!) I have very limited

> computer time!

>

> I look forward to being a part of this list and

> learning from other parents who have children with

> this condition!

>

> Thanks,

>

> Pamela and Rich

>

> __________________________________________________

>

November 6, 2002

Welcome, ! This is a wonderful group for support and

encouragement on your weight loss journey. It is good to have a

mini goal. Good luck and I look forward to getting to know you!

> Hello everyone,

> I'm new to the group and wanted to introduce myself. My name is

and I am 35. I have been battling my weight all of my life.

I am currently at 550+ but I am working my way down. My short term

goal is to get down to 500 and then go from there. I am still

looking for a place to get weighed so I can be sure of my exact

weight and track my progress. I look forward to getting to know you

all and losing this unwanted weight while cahnging my bad eating

habits.

> Sincerely,

>

February 3, 2003

Teri and Kirk,

Welcome to this group. I just joined a few weeks ago, and it has been life saving for me. My son has Microtia/Atresia. I have had a very difficult time coming to terms with this, and the support I have received from this group is what has kept me going.

My son is now 3 1/2 months old, and it has taken me this long to finally "deal" with this and move on.

I went to 's first Dr's visit regarding his condition, just this past Friday. I will go into as much detail about what we discussed, for your benefit, and also to share with everyone else in the group. Maybe someone will let me know what I missed, and/or provide more advice.

We went to see Dr. De La Cruz at the House Ear Institute (House Ear Clinic, Inc.) in Los Angeles, California. Dr. De La Cruz was able to answer some, but not all of our questions. He did go over the whole "ear structure" and explained the details regarding s Atresia and possible restoration of some hearing, which at this point my husband and I are not too concerned about, since he appears to have normal hearing on the left side. ( has unilateral Microtia/Atresia on the right side). Dr. De La Cruz did request that we have an ABR (Auditory Brainstem Response) test completed, and forward him the results. So this should probably be where you should start with Gabby.

underwent a CT scan at the hospital when he was born, and Dr. De La Cruz, said "NO MORE X-RAY S!" Apparently none are needed until age 6 when would be ready for surgery.

Dr. De La Cruz said he would not need to see until he was 3 years old, so apparently there is nothing else to do there, but wait. He did suggest that we get in touch with Dr. Burt Brent. You will hear this name being mentioned a lot. From what I have heard, he is one of the best in ear reconstruction. Dr. De La Cruz's assisting nurse, indicated to me that she has seen some of Dr. Brent's work, and that it's really good.

What Dr. De La Cruz did suggest, in our case, was to see a Cranio-Facial team at a Children's Hospital due to the hemifacial deformities that has. (which I - as a mother - had noticed since the day he was born, but my sister swears she can't see). Unfortunately, Dr. De La Cruz, also felt that has deformities on his head, specifically the forehead area, so this is what has now sent me on another whirlwind of sleepless nights, and tearful days.

My husband's afraid I'm going to break down on him, but I have to remain strong - for 's sake - he's going to need a strong mother for what lays ahead of him.

According to Dr. De La Cruz, the microtia/atresia that resulted in hemifacial deformities may impact his face, his head and his jaw, including his dental development, in which case we would need to see an Oral Surgeon when the time comes. I don't mean to scare any "newbies" with this information, but all of this had crossed my mind, so that's why I asked Dr. De La Cruz so many questions. For all of those who have been through this before, including the Cranio-Facial issues, I welcome all advice you can offer, and look forward to reading your experiences.

I asked Dr. De La Cruz if this was hereditary. He indicated that sometimes it is genetics, but other times it is not. He asked if I recalled being sick between 4-6 weeks of pregnancy, with a cold. My husbands says I was, but I can't remember (it's been to long). In any event, Dr. De La Cruz, indicated that in some cases it appears that if the mother got the cold during that period in time it may have triggered the Microtia/Atesia. Has anyone else heard this?

Regarding the kidneys and heart, Dr. De La Cruz indicated that 99% of the time those are normal, but following the advice of other parents in this group I'm having my Pediatrician look into getting an ultrasound to check 's kidneys, and an EKG for his heart.

's condition requires a lot of "wait and see". There are no specific hearing tests to seek out, or any benefits of intervention in the first few years for , since he can hear out of his left ear. When I asked him if I should be concerned about background noise, he said "no". (Any advice from others that have been there would be welcomed.)

He could not answer my question on how I would know if has BOR Syndrome, and referred me back to his pediatrician. I have an appointment with him on the 14th to discuss this, although I don't know if he himself would be able to answer this for me.

Today I called Dr. Brent's office. The receptionist said to mail Dr. Brent pictures of to include bad ear, good ear, and full face pictures to see the deformities. She indicated a consultation would not be necessary until was 4 or 5 years old. Does this sound right? Should I push to get seen earlier?

Well, I think that's all for now. Teri and Kirk, sorry for rambling on so much. To the group, thanks for "listening" and I look forward to your advice and comments.

Thank you so very much,

a

mother of right microtia/atresia stage II, 3 1/2 months

February 3, 2003

Steve,

Thank you for the advice. I will make sure I go over this with my pediatrician.

This is exactly the kind of feedback I was looking for.

a

Mother of

On Mon, 3 Feb 2003 17:40:58 -0800 "Steve Kazemir" writes:

There are no specific hearing tests to seek out,

Except for the ABR....This is a hearing test. In addition, I would recommend that you get his hearing tested every 3-6 months. Not because there may be a problem, but just in case. If he only has unilateral hearing, you want to be sure you stay on top of it. If there is any deterioration, you want to deal with it right away (in case of cholosteotoma). I am not trying to set of any alarms, the chances his typical ear will have any troubles is the same for anyone with two typical ears. It's just that he only has one, so you want to be sure it is in good shape. Besides a hearing test is quite easy, and non-invasive. I would suggest you find an audiologist and ask the same question.

or any benefits of intervention in the first few years for , since he can hear out of his left ear. When I asked him if I should be concerned about background noise, he said "no". (Any advice from others that have been there would be welcomed.)

Again I would recommend talking to an audiologist about this. Background noise always makes it harder to hear someone or something clearly, whether you have bilateral or unilateral hearing. With unilateral hearing, it is harder to separate the desired sound from the background. This doesn't mean it is impossible to do, it is just harder. So especially when a child is acquiring language, why not try and reduce the background noise, so he can hear himself, and others more clearly? This makes it easier and less stressful for them to acquire speech. I am sure if you did nothing to reduce background noise, he would hear enough, and learn language just fine, so I would not worry too much about it. (We once talked to a parent of a child who had bilateral atresia, and a bone conduction hearing aid. They said they purposely left the TV on loudly all the time, and swear that that is what taught their child to speak. From a speech pathologist point of view, this simply generates constant background noise, and made it more difficult for him to hear).

Steve (Father to , bilateral Atresia/Microtia)

February 3, 2003

Chelvi,

Thank you for your kind words, it's comforting to know that I'm not the only one having such a hard time this early on.

a

Mother of

On Tue, 04 Feb 2003 11:06:50 +0800 (Singapore Standard Time) chelvi writes:

a,

I know the feeling .... my son is now 4.5 years old. Actually, you are doing so much better than me, 4 years ago. I bet you will do a great job at seeing to 's needs.

You are doing all the right things .... it may seem difficult now because there are so many issues to address ... it can be over whelming ... just hang in there ... it does get more manageable over time.

Just throw your thoughts and fears over here .... we are all in the same boat.

Love your baby with all your might. You cannot go wrong.

Chelvi

Malaysia

(mother to handsome son 4.5 years, unilateral atresia/microtia, hfm)

-- Re: Introduction