Re: Looking for advice to a family in the NICU

[Guest guest]

Yuka,

Those weeks in the NICU were horrible! I remember them all too well. The best

advise we were given was by one of our favorite nurses, she told us that no one

can say what Raegan will be like, they, meaning doctors, can only tell us what

they know now. This is a statement that I repeat over and over to myself and it

is so true! While in the NICU we were told that Raegan could very well be

deaf-blind. Well today she's two years old, she's hears great with one hearing

aid. Her vision is excellent, she has no visual issues, though she does have

colobomas. She is talking, signing and walking independently! She truly amazes

us daily and she has overcome so much. Raegan has had a g-tube since she was 2

weeks old and we have not had to use it in 5 months, she is totally oral! You

never know what our kids can do. This may be very hard for the family to

swallow, right now their lives are shattered, but keep the faith and know that

these doctors can't predict what's to come. Also,

the CHARGE manual was extremely helpful, as well as this group, it's so nice to

not feel alone.Connecting to other families with children with disabilities is

also very helpful. Besides this, I offer them my prayers. Best of luck.

Judy

Yuka Persico yuka@...> wrote:

Dearest CHARGE family-

Looking back to those incredible life-changing life-shaping days in the neonatal

unit - with the wisdom, mercy, tenderness and hindsight of experience- what

advice would you give to new parents of a marvellous son with CHARGE?

How shall they get through the time of waiting, not knowing and hoping to go

home?

What things would you now advise yourself back then (if only you could) ? What

would you look for? What would you do for yourself? What would you tell others?

How might you get supports from people who are feeling helpless and a bit afraid

of your circumstances? What did you find to be truly important? What things

would you make sure to do with - for - to your precious baby?

Thank you so much in advance-

in love,

Yuka

[Guest guest]

Hmmm, I have thought about this for a while. I suppose I could share some

insight. Chrystine spent her first couple days with me in our hospital room. We

were learning to breastfeed, or so I thought... I had known she had a kidney

that was cystic and possibly a heart defect prior to her birth. After she was

born, I pretended it wasn't real. My High Risk Clinic that delivered her

were very busy and lacking in human response and didn't communicate with my

pediatrician. I had delivered Arleigh, healthy 3 years before and I suppose

that's the reason that the pediatrician didn't come to look in on Chrystine

until

the day we were supposed to be released. I didn't want to admit the truth

when her doctors asked if there were any other reasons that I had to be

transferred to the High Risk Clinic. But, I knew that I had to answer it

honestly.

30-45 minutes later, my dream world was turned upside down. 2 nurses with

tears in their eyes took her away to the NICU. I wondered why they might have

been crying when a nephrologist and cardiologist walked in. I was finally

coming

to reality. I had to admit it. Chrystine was in renal failure. She needed

dialysis. She had lost nearly 2 pounds of her birthweight-I didn't even know

that was possible. I had been in bed until that moment. I got out of the

hospital bed and never got back in. We had the Scrub down and yellow gowns and

masks. I walked through a dark room aside from the monitors lit and sounding

everywhere. She was in an isolation room alone. So tiny and unafraid. I went to

her through her wires and looked back out the door to the other babies, all so

small and so ill-the nurses at their bedsides... the mothers and fathers

with their hands through small holes longing to touch their infants, the

infants

they had waited for with so many hopes. I decided that was it. I promised my

daughter if she would fight, I would fight. We would give it every ounce of

fight we hadso she could have a chance at life. Life-whatever it is I want

her to have a chance at it. If it means surgery after surgery- feeding

tubes-braces for her legs-whatever we're gonna do it. I have to admit that

though she

was released from the NICU, I can return their any time I want. All I have

to do is close my eyes, and I'm back there with her and the other babies.

SInce then, I have learned that not all doctors should be doctors. Some nurses

are angels, and some aren't. But mostly, I have learned that the power of the

human spirit is immeasurable.

chrystal,

arleigh-aged 4 1/2

chrystine hope-19 months CHaRGE+chronic kidney disease

silas-8 months

************************************** See what's free at http://www.aol.com.

[Guest guest]

Hmmm, I have thought about this for a while. I suppose I could share some

insight. Chrystine spent her first couple days with me in our hospital room. We

were learning to breastfeed, or so I thought... I had known she had a kidney

that was cystic and possibly a heart defect prior to her birth. After she was

born, I pretended it wasn't real. My High Risk Clinic that delivered her

were very busy and lacking in human response and didn't communicate with my

pediatrician. I had delivered Arleigh, healthy 3 years before and I suppose

that's the reason that the pediatrician didn't come to look in on Chrystine

until

the day we were supposed to be released. I didn't want to admit the truth

when her doctors asked if there were any other reasons that I had to be

transferred to the High Risk Clinic. But, I knew that I had to answer it

honestly.

30-45 minutes later, my dream world was turned upside down. 2 nurses with

tears in their eyes took her away to the NICU. I wondered why they might have

been crying when a nephrologist and cardiologist walked in. I was finally

coming

to reality. I had to admit it. Chrystine was in renal failure. She needed

dialysis. She had lost nearly 2 pounds of her birthweight-I didn't even know

that was possible. I had been in bed until that moment. I got out of the

hospital bed and never got back in. We had the Scrub down and yellow gowns and

masks. I walked through a dark room aside from the monitors lit and sounding

everywhere. She was in an isolation room alone. So tiny and unafraid. I went to

her through her wires and looked back out the door to the other babies, all so

small and so ill-the nurses at their bedsides... the mothers and fathers

with their hands through small holes longing to touch their infants, the

infants

they had waited for with so many hopes. I decided that was it. I promised my

daughter if she would fight, I would fight. We would give it every ounce of

fight we hadso she could have a chance at life. Life-whatever it is I want

her to have a chance at it. If it means surgery after surgery- feeding

tubes-braces for her legs-whatever we're gonna do it. I have to admit that

though she

was released from the NICU, I can return their any time I want. All I have

to do is close my eyes, and I'm back there with her and the other babies.

SInce then, I have learned that not all doctors should be doctors. Some nurses

are angels, and some aren't. But mostly, I have learned that the power of the

human spirit is immeasurable.

chrystal,

arleigh-aged 4 1/2

chrystine hope-19 months CHaRGE+chronic kidney disease

silas-8 months

************************************** See what's free at http://www.aol.com.

[Guest guest]

Hmmm, I have thought about this for a while. I suppose I could share some

insight. Chrystine spent her first couple days with me in our hospital room. We

were learning to breastfeed, or so I thought... I had known she had a kidney

that was cystic and possibly a heart defect prior to her birth. After she was

born, I pretended it wasn't real. My High Risk Clinic that delivered her

were very busy and lacking in human response and didn't communicate with my

pediatrician. I had delivered Arleigh, healthy 3 years before and I suppose

that's the reason that the pediatrician didn't come to look in on Chrystine

until

the day we were supposed to be released. I didn't want to admit the truth

when her doctors asked if there were any other reasons that I had to be

transferred to the High Risk Clinic. But, I knew that I had to answer it

honestly.

30-45 minutes later, my dream world was turned upside down. 2 nurses with

tears in their eyes took her away to the NICU. I wondered why they might have

been crying when a nephrologist and cardiologist walked in. I was finally

coming

to reality. I had to admit it. Chrystine was in renal failure. She needed

dialysis. She had lost nearly 2 pounds of her birthweight-I didn't even know

that was possible. I had been in bed until that moment. I got out of the

hospital bed and never got back in. We had the Scrub down and yellow gowns and

masks. I walked through a dark room aside from the monitors lit and sounding

everywhere. She was in an isolation room alone. So tiny and unafraid. I went to

her through her wires and looked back out the door to the other babies, all so

small and so ill-the nurses at their bedsides... the mothers and fathers

with their hands through small holes longing to touch their infants, the

infants

they had waited for with so many hopes. I decided that was it. I promised my

daughter if she would fight, I would fight. We would give it every ounce of

fight we hadso she could have a chance at life. Life-whatever it is I want

her to have a chance at it. If it means surgery after surgery- feeding

tubes-braces for her legs-whatever we're gonna do it. I have to admit that

though she

was released from the NICU, I can return their any time I want. All I have

to do is close my eyes, and I'm back there with her and the other babies.

SInce then, I have learned that not all doctors should be doctors. Some nurses

are angels, and some aren't. But mostly, I have learned that the power of the

human spirit is immeasurable.

chrystal,

arleigh-aged 4 1/2

chrystine hope-19 months CHaRGE+chronic kidney disease

silas-8 months

************************************** See what's free at http://www.aol.com.

[Guest guest]

One piece of advice, go out on a date with your spouse. Whether it is

dinner , a movie, or just ice cream, you are under a lot of stress and

need a break once in a while. It will be some time until you trust

your child with anyone else but yourselves (especially if you have no

family in town) so take a break while you can and go out and have fun

or at least talk and communicate with your spouse. A child in the

NICU can either weaken or strengthen a marriage. Try to make the

effort to strengthen yours if at all possible.

Also, as far as getting support from others who do not know what they

can do to help, the most helpful thing our friends did was set up

dinner deliveries for us. We had 3-4 meals either made or bought for

us each week that had enough for leftovers. It made our friends feel

like they were helping and helped us see how great a support structure

we had, even though we have no family in town. Also, with the NICU's

strict visitation rules it allowed us to see friends we would not see

otherwise.

>

> Dearest CHARGE family-

>

> Looking back to those incredible life-changing life-shaping days in

the neonatal unit - with the wisdom, mercy, tenderness and hindsight

of experience- what advice would you give to new parents of a

marvellous son with CHARGE?

>

> How shall they get through the time of waiting, not knowing and

hoping to go home?

>

> What things would you now advise yourself back then (if only you

could) ? What would you look for? What would you do for yourself?

What would you tell others? How might you get supports from people

who are feeling helpless and a bit afraid of your circumstances? What

did you find to be truly important? What things would you make sure

to do with - for - to your precious baby?

>

> Thank you so much in advance-

>

> in love,

>

> Yuka

>

>

[Guest guest]

One piece of advice, go out on a date with your spouse. Whether it is

dinner , a movie, or just ice cream, you are under a lot of stress and

need a break once in a while. It will be some time until you trust

your child with anyone else but yourselves (especially if you have no

family in town) so take a break while you can and go out and have fun

or at least talk and communicate with your spouse. A child in the

NICU can either weaken or strengthen a marriage. Try to make the

effort to strengthen yours if at all possible.

Also, as far as getting support from others who do not know what they

can do to help, the most helpful thing our friends did was set up

dinner deliveries for us. We had 3-4 meals either made or bought for

us each week that had enough for leftovers. It made our friends feel

like they were helping and helped us see how great a support structure

we had, even though we have no family in town. Also, with the NICU's

strict visitation rules it allowed us to see friends we would not see

otherwise.

>

> Dearest CHARGE family-

>

> Looking back to those incredible life-changing life-shaping days in

the neonatal unit - with the wisdom, mercy, tenderness and hindsight

of experience- what advice would you give to new parents of a

marvellous son with CHARGE?

>

> How shall they get through the time of waiting, not knowing and

hoping to go home?

>

> What things would you now advise yourself back then (if only you

could) ? What would you look for? What would you do for yourself?

What would you tell others? How might you get supports from people

who are feeling helpless and a bit afraid of your circumstances? What

did you find to be truly important? What things would you make sure

to do with - for - to your precious baby?

>

> Thank you so much in advance-

>

> in love,

>

> Yuka

>

>

[Guest guest]

One piece of advice, go out on a date with your spouse. Whether it is

dinner , a movie, or just ice cream, you are under a lot of stress and

need a break once in a while. It will be some time until you trust

your child with anyone else but yourselves (especially if you have no

family in town) so take a break while you can and go out and have fun

or at least talk and communicate with your spouse. A child in the

NICU can either weaken or strengthen a marriage. Try to make the

effort to strengthen yours if at all possible.

Also, as far as getting support from others who do not know what they

can do to help, the most helpful thing our friends did was set up

dinner deliveries for us. We had 3-4 meals either made or bought for

us each week that had enough for leftovers. It made our friends feel

like they were helping and helped us see how great a support structure

we had, even though we have no family in town. Also, with the NICU's

strict visitation rules it allowed us to see friends we would not see

otherwise.

>

> Dearest CHARGE family-

>

> Looking back to those incredible life-changing life-shaping days in

the neonatal unit - with the wisdom, mercy, tenderness and hindsight

of experience- what advice would you give to new parents of a

marvellous son with CHARGE?

>

> How shall they get through the time of waiting, not knowing and

hoping to go home?

>

> What things would you now advise yourself back then (if only you

could) ? What would you look for? What would you do for yourself?

What would you tell others? How might you get supports from people

who are feeling helpless and a bit afraid of your circumstances? What

did you find to be truly important? What things would you make sure

to do with - for - to your precious baby?

>

> Thank you so much in advance-

>

> in love,

>

> Yuka

>

>

[Guest guest]

Yuka,

After thinking of your question for a few days now I still find it hard to come

up with any great advice. I'm sure that at the time there was nothing that could

be said or done to make me feel better. The initial life shattering diagnosis

didn't really sink in for several months with me and I still feel shocked at the

amount of neverending medical/educational and social that we face each day.

At the time I was given info, photos and stories about CHARGE Syndrome and I

thought all of it sucked. Even the best case scenarios did little to make me

feel better. The first paper that was given to me had mental retardation in bold

letters under R. I think one of the best things a new family can do is to find

the most recent info and to remember that lots of the " well meaning " medical

staff actually know little about our kids, so take every thing with " a grain of

salt " .

I truly didn't start to feel better until I meant and Kennedy Weir. We

quickly formed a bond that has become one of the most important relationships in

my and MacKenzie's life.

We also got lucky in having Kim Blake work at our hospital. A doctor that really

" gets it " is invaluable.

Lastly, sleep! Take any respite care that you can and make it count. I spent 4

years with only 2 or 3 hours of sleep at a time, when I look back i have no idea

how I survived. My marriage didn't and I'm sure the trials of those first years

played a significant role.

Jeanie Colp

mom to MacKenzie 9, Tyler 15 & Zachary 12

We _._,___

[Guest guest]

Jeanie/Yuka,

It wasn't until Kennedy was three months when Kim Blake literally came

flying in to the neonatal unit that things looked up. She was absolutely

the best thing that happened to us so I agree wholeheartedly about getting

" good " information and being proactive as much as possible; look out there

for more information if you're not happy with what your hearing. Meeting

you guys was so great too - not having too much familial involvement from my

siblings, I consider you my " sister " since Kennedy's been born.

I also loved the earlier suggestion of taking a break to go out - it's hard

to do but it really does refresh you and it's important to try and keep that

relationship strong.

Also, I will (biasedly) add, join an online support group - it was SO

amazing for us, even back then, when there's no time for going to a physical

meeting, you can always hop on line and ask others who've been there or just

vent to them; it's been a huge part of my life for nine years now.

www.chargesyndrome.info

>

> Yuka,

>

> After thinking of your question for a few days now I still find it hard to

> come up with any great advice. I'm sure that at the time there was nothing

> that could be said or done to make me feel better. The initial life

> shattering diagnosis didn't really sink in for several months with me and I

> still feel shocked at the amount of neverending medical/educational and

> social that we face each day.

>

> At the time I was given info, photos and stories about CHARGE Syndrome and

> I thought all of it sucked. Even the best case scenarios did little to make

> me feel better. The first paper that was given to me had mental retardation

> in bold letters under R. I think one of the best things a new family can do

> is to find the most recent info and to remember that lots of the " well

> meaning " medical staff actually know little about our kids, so take every

> thing with " a grain of salt " .

>

> I truly didn't start to feel better until I meant and Kennedy Weir.

> We quickly formed a bond that has become one of the most important

> relationships in my and MacKenzie's life.

>

> We also got lucky in having Kim Blake work at our hospital. A doctor that

> really " gets it " is invaluable.

>

> Lastly, sleep! Take any respite care that you can and make it count. I

> spent 4 years with only 2 or 3 hours of sleep at a time, when I look back i

> have no idea how I survived. My marriage didn't and I'm sure the trials of

> those first years played a significant role.

>

> Jeanie Colp

> mom to MacKenzie 9, Tyler 15 & Zachary 12

> We _._,___

>

>

[Guest guest]

Jeanie/Yuka,

It wasn't until Kennedy was three months when Kim Blake literally came

flying in to the neonatal unit that things looked up. She was absolutely

the best thing that happened to us so I agree wholeheartedly about getting

" good " information and being proactive as much as possible; look out there

for more information if you're not happy with what your hearing. Meeting

you guys was so great too - not having too much familial involvement from my

siblings, I consider you my " sister " since Kennedy's been born.

I also loved the earlier suggestion of taking a break to go out - it's hard

to do but it really does refresh you and it's important to try and keep that

relationship strong.

Also, I will (biasedly) add, join an online support group - it was SO

amazing for us, even back then, when there's no time for going to a physical

meeting, you can always hop on line and ask others who've been there or just

vent to them; it's been a huge part of my life for nine years now.

www.chargesyndrome.info

>

> Yuka,

>

> After thinking of your question for a few days now I still find it hard to

> come up with any great advice. I'm sure that at the time there was nothing

> that could be said or done to make me feel better. The initial life

> shattering diagnosis didn't really sink in for several months with me and I

> still feel shocked at the amount of neverending medical/educational and

> social that we face each day.

>

> At the time I was given info, photos and stories about CHARGE Syndrome and

> I thought all of it sucked. Even the best case scenarios did little to make

> me feel better. The first paper that was given to me had mental retardation

> in bold letters under R. I think one of the best things a new family can do

> is to find the most recent info and to remember that lots of the " well

> meaning " medical staff actually know little about our kids, so take every

> thing with " a grain of salt " .

>

> I truly didn't start to feel better until I meant and Kennedy Weir.

> We quickly formed a bond that has become one of the most important

> relationships in my and MacKenzie's life.

>

> We also got lucky in having Kim Blake work at our hospital. A doctor that

> really " gets it " is invaluable.

>

> Lastly, sleep! Take any respite care that you can and make it count. I

> spent 4 years with only 2 or 3 hours of sleep at a time, when I look back i

> have no idea how I survived. My marriage didn't and I'm sure the trials of

> those first years played a significant role.

>

> Jeanie Colp

> mom to MacKenzie 9, Tyler 15 & Zachary 12

> We _._,___

>

>

[Guest guest]

Jeanie/Yuka,

It wasn't until Kennedy was three months when Kim Blake literally came

flying in to the neonatal unit that things looked up. She was absolutely

the best thing that happened to us so I agree wholeheartedly about getting

" good " information and being proactive as much as possible; look out there

for more information if you're not happy with what your hearing. Meeting

you guys was so great too - not having too much familial involvement from my

siblings, I consider you my " sister " since Kennedy's been born.

I also loved the earlier suggestion of taking a break to go out - it's hard

to do but it really does refresh you and it's important to try and keep that

relationship strong.

Also, I will (biasedly) add, join an online support group - it was SO

amazing for us, even back then, when there's no time for going to a physical

meeting, you can always hop on line and ask others who've been there or just

vent to them; it's been a huge part of my life for nine years now.

www.chargesyndrome.info

>

> Yuka,

>

> After thinking of your question for a few days now I still find it hard to

> come up with any great advice. I'm sure that at the time there was nothing

> that could be said or done to make me feel better. The initial life

> shattering diagnosis didn't really sink in for several months with me and I

> still feel shocked at the amount of neverending medical/educational and

> social that we face each day.

>

> At the time I was given info, photos and stories about CHARGE Syndrome and

> I thought all of it sucked. Even the best case scenarios did little to make

> me feel better. The first paper that was given to me had mental retardation

> in bold letters under R. I think one of the best things a new family can do

> is to find the most recent info and to remember that lots of the " well

> meaning " medical staff actually know little about our kids, so take every

> thing with " a grain of salt " .

>

> I truly didn't start to feel better until I meant and Kennedy Weir.

> We quickly formed a bond that has become one of the most important

> relationships in my and MacKenzie's life.

>

> We also got lucky in having Kim Blake work at our hospital. A doctor that

> really " gets it " is invaluable.

>

> Lastly, sleep! Take any respite care that you can and make it count. I

> spent 4 years with only 2 or 3 hours of sleep at a time, when I look back i

> have no idea how I survived. My marriage didn't and I'm sure the trials of

> those first years played a significant role.

>

> Jeanie Colp

> mom to MacKenzie 9, Tyler 15 & Zachary 12

> We _._,___

>

>

[Guest guest]

crys evas mum did a wonderful vidio for nicu mums cris do u mind if i or u

send yuka that link or even post it on the group or everyone could just

archive it to c and go to evas baby site click on one of her vids in the

links and then c;lick more by cristal then click nicu vid

>

> Jeanie/Yuka,

> It wasn't until Kennedy was three months when Kim Blake literally came

> flying in to the neonatal unit that things looked up. She was absolutely

> the best thing that happened to us so I agree wholeheartedly about getting

> " good " information and being proactive as much as possible; look out there

> for more information if you're not happy with what your hearing. Meeting

> you guys was so great too - not having too much familial involvement from

> my

> siblings, I consider you my " sister " since Kennedy's been born.

>

> I also loved the earlier suggestion of taking a break to go out - it's

> hard

> to do but it really does refresh you and it's important to try and keep

> that

> relationship strong.

>

> Also, I will (biasedly) add, join an online support group - it was SO

> amazing for us, even back then, when there's no time for going to a

> physical

> meeting, you can always hop on line and ask others who've been there or

> just

> vent to them; it's been a huge part of my life for nine years now.

>

>

> www.chargesyndrome.info

>

> On 6/8/07, Jeanie jeaniecolp@... >

> wrote:

> >

> > Yuka,

> >

> > After thinking of your question for a few days now I still find it hard

> to

> > come up with any great advice. I'm sure that at the time there was

> nothing

> > that could be said or done to make me feel better. The initial life

> > shattering diagnosis didn't really sink in for several months with me

> and I

> > still feel shocked at the amount of neverending medical/educational and

> > social that we face each day.

> >

> > At the time I was given info, photos and stories about CHARGE Syndrome

> and

> > I thought all of it sucked. Even the best case scenarios did little to

> make

> > me feel better. The first paper that was given to me had mental

> retardation

> > in bold letters under R. I think one of the best things a new family can

> do

> > is to find the most recent info and to remember that lots of the " well

> > meaning " medical staff actually know little about our kids, so take

> every

> > thing with " a grain of salt " .

> >

> > I truly didn't start to feel better until I meant and Kennedy Weir.

> > We quickly formed a bond that has become one of the most important

> > relationships in my and MacKenzie's life.

> >

> > We also got lucky in having Kim Blake work at our hospital. A doctor

> that

> > really " gets it " is invaluable.

> >

> > Lastly, sleep! Take any respite care that you can and make it count. I

> > spent 4 years with only 2 or 3 hours of sleep at a time, when I look

> back i

> > have no idea how I survived. My marriage didn't and I'm sure the trials

> of

> > those first years played a significant role.

> >

> > Jeanie Colp

> > mom to MacKenzie 9, Tyler 15 & Zachary 12

> > We _._,___

> >

> >