Conference moira::parenting

Wendy,

	Prayers and good wishes coming right up. It 
sounds like you need some short term help around the 
house. Do you have any neighbors with teenage kids?
The type of things you're talking about needing are
certainly things that a local teenager could do for
you. Remember that none of us are superhuman and that
there are lots of folks who, if they know what you
need, are willing to pitch in. 

Mike

    Wendy - my thoughts and prayers are definately with you.  My father was
    diagnosed with the same thing in 1975 while he was in the Navy.  It's
    not a fun thing to go through.  He ended up having a kidney transplant,
    which was still relatively new back then.  The transplant worked
    wonderfully - the kidney started working before they even finished
    stitching it in!  The National Kidney Foundation can provide you with a
    lot of information.  I have their number and address at home and will
    bring it in tomorrow and post it.
    
    Hang in there, the prayer network for you guys has been started!
    
    Barbara

    Wendy,
    
    Some more prayers and good wishes, this time from the UK. Try and 
    take care of yourself as best you can, I know this is a trying time
    for everyone in the family. I'm keeping my fingers crossed for
    Spencer and wish I was over there, able to help, if only with
    doing dishes and taking Griffin off your hands for a little while....
    
    When you've got a moment, let us know progress.
    
    
    Gilla 
    (read-only up to now)

    
    
    Wendy,
    
    I want to add my thoughts and prayers also.  I can't even begin to
    imagine how scary a time it is for you and your family.  I know it may
    be difficult, but try to take care of yourself too!!
    
    Wishing Spencer a speedy recovery,
    
    Laurie
    
    Both my boys are going to get extra special hugs tonight, they are to 
    precious and with the hustle and bustle of life I sometimes forget how 
    lucky we are to have two healthy and happy boys.
    

We'll be praying for you in the Fleury house to.

- Carol

    
    
    	Thank you all for your good wishes both here and through mail. If I
    haven't repsonded to you personally yet, it's because I can't. (it's so
    tough to not just sit here in my office and cry).
    
    	Your kindness means more to me than I can tell you in words.
    
    		I'll keep you posted on Spencer's progress.
                                                         
    				Wendy

    My prayers are with you and your family too.  I'm so happy you didn't
    just wait til Monday as the doctor told you too.  This whole thing is
    in God's hands so we all need to pray for his full recovery.
    
    Hugs,
    Mary

    Oh Wendy and Marc, my heart aches for you.  It is so hard when
    one of your children is ill but when it is a serious illness it
    becomes almost unbearable at times.  Of course, we will kept you 
    in our prayers and if you need anything at all please let me know.
    My daughter, Alle, was born with both of her kidneys deformed and 
    had to have surgery at eighteen months.  It was so hard seeing her
    so sick until she was big enough for surgery but now she is a happy
    healthy seventeen year old... :>)
    
    I live in Nashua, and my husband works nights, if you need someone
    to care for Griffin or even both so you can get caught up on your
    work or house please feel free to bring one or both over sometime.
    I have a three year old and a 19 month old at home now who would 
    love the company..I have never met you but feel a closeness through this
    notes file - kinda like having an extended family although I am mostly
    a read only participant.
    
    Take care of yourselves, Spencer and Griffin and the new baby need you both
    healthy...
    
    Vickie
    
    

    Wendy,  My prayers and thoughts are with you and your family,
    especially little Spencer.  I will make sure that when I take my son
    Alex to church this Easter weekend We will say a special prayer for
    Spencer to recover from ilness.
    
    My Mom was on Kidney dialysis for a couple years but they say kids are
    tough and I know that Spencer will be ok.
    
    
    
    My prayers and thoughts are with you.
    
    Liz Trumpolt & Family

    We're sending healing energy as well.  Hope all of us are helping to
    buoy all of you.
    
    Leslie

    Hi Wendy,
    
    Here's the prayer:
    
    Heavenly Father - I come to you humbly asking for your blessing on this
    family. I ask that you give wisdom to the attending physicians -
    strength and hope to this family, and moutains of love to all of them. 
    Please have mercy on them and provide direction of what they should do
    next. Thank you.
    
    Wendy - You're in my thoughts and prayers. You WILL get through this
    God has the power to do anything - I know as a mother of 2 - 2 years old
    and 5 months old - the same two children the infertitly doctors (4
    different ones) said I wouldn't have - obviously they forgot to check 
    with God!
    
    Much Love -

    
    
    Wendy,
    
    We are keeping you in our thoughts too. As you already know, things can
    go from worse to good. Chloe contracted bacterial meningitis at 6
    months old. I still remember this Labor day afternoon when the doctor
    told us to get ready for the worst... She is now a healthy 2 year old.
    
    Children are very strong and very resilient. I am sure Spencer will be
    just fine. It sounds like he has already pulled through the worst of
    it.
    
    In the meantime, we'll be thinking of Spencer, you and your family.
    
    Patricia.

Wendy, my advice is to choose a friend who can organize people for you.
When people say to you, "Is there anything I can do?" then send them to
your friend.

We had a couple who organized meals for us when Justin was having his
heart surgery.  He was in intensive care for 3 weeks and during that time,
and for a while after we got back, we had casseroles dropped off for us
every couple of days.  They would be in our refrigerator waiting for us at
night when we got home from the hospital. 

Someone also came in and folded our laundry for us. 

The support was incredible, and even when we were so tired that we didn't 
want to deal with people right at a particular moment, we could think about 
all the people who had dropped off meals or gift bags or whatever, and we 
felt loved.

Please set up something like that.  It will save you a *lot* of time.

I'm praying for you all.

    Carol

Prayers with you from here too, for peace of heart for you and Marc through
such a distressing trial.  And for assurance of God's hand protecting
Spencer and bringing him safely through to fullness of life, to delight you 
through the years ahead...

					In Jesus' love
							Andrew

    Wendy,
    
    I'm usually a read-only noter, but I wanted you to know that my prayers
    are with you and your family, too.
    
    My church usually rallies around church members who are having 
    emergencies -- last year I organized meals and housecleaning 
    (Merry Maids) for a member who had major surgery.  I figured that would
    be one less thing she'd have to worry about.
    
    Do you have that kind of connection with church, family and/or friends?
    
    I work in IDC like you do...let me know if there's anything I can do
    other than pray (I don't know you personally, but I feel like I do from
    reading your notes).
    
    Lesley       
    223-2552
    META::BROWN

    Wendy & Marc,
    
    My prayers and thoughts are also with you at this time.
    
    I've seen Spencer (my son Zachary is in the same toddler program at
    Tollhouse), and I always think of of him as super-healthy because of 
    his size.  If there's anything that I can help you with, please let me
    know.
    
    Take care,
    
    -Joy
    

	Wendy,

	You, Spencer, and your family are in our prayers.

	Karen T. 

	Spencer's blood work yesterday still has him as "stabilized".

	There are three numbers that we are particularly interested in :   
	
        BUN            indicators of kidney function
	Creatinine  

	hematocrit     indicator of blood loss and possible kidney malfunction

	
	The BUN went down which is good.
	
	The Creatinine stayed the same which is ok but we wanted to see it go
down, at least he is not getting worse.

	The hematocrit went down which is bad as this means his is getting even
more anemic and it may be an indicator of kidney malfunction.

	The Dr. although "cautiously optimistic" was very clear to tell us that 
although it did not seem like it was going to be "very bad" we were still not
out of the woods (but we are closer to the edge).

	She cautioned us that dialysis although now somewhat remote, was still
a possibility.

	She told us that blood transfusions may be a possibility  (if his
hematocrit continues to go down) Marc is on alert as a blood donor, I don't
know if I am allowed to or not.

	This all came on so suddenly, no fever, no illness, boom just kidney
malfunction.

	Unfortunately, there is no quick answer to this, it is going to take
quite a lot of monitoring before we have a clear idea of what is happening.
It's the long stretches of not knowing that are doing us in. We just don't know
what is going on yet.

	For now Spencer is at daycare, everyone felt it was best to get him to
his regular schedule. To look at him you would never know that this war is
raging in his little body. However, if he:

	gets a fever
	vomits
	produces bright red blood instead of dark brown blood
	doesn't pee for a long time
	starts swelling

	Then they have to call us and we have to bring him back in.

	I cringe every time the phone rings.

	As Marc put it, we are starting to hit the wall. Marc is starting to
get very sick (I am making him go to the Dr. today) and I lost it this morning
because I couldn't find a sweatshirt to a sweatsuit for Griffin. (I never even
liked that blasted sweatsuit in the first place).

	Yesterday, we came home from the Dr.'s to food and flowers on our front
porch. It made us realize that we are not alone in this.

	Thank you all for your thoughts and offers of help. I keep the mail and
notes replies in a folder on the dining room table and I reread them often.
They do our hearts good. Someday they will all go into a book so that Spencer
will know how very many people love and care for him.

				Wendy

    Wendy,
    
    Prayers and Love from the DiPasquale household.
    
    Sherry

    Wendy,
    
    I'm working in Marlboro today and was not aware of Spencer's illness
    until another editor here who reads this notesfile mentioned it.
    
    I was so sorry to here that he was ill. Needless to say, my thoughts
    and prayers are with you. You know how I feel about the little ones
    since we always exchange pictures.
    
    Take care - we're all pulling for Spenser (and Mom and Dad, too!)
    
    Karen

    Prayers for Spencer, for you, Marc, and Griffin from us.  And the song
    that gets me through tough times:
    
    Ths sun comes up tomorrow,
    Bet your bottom dollar that tomorrow there'll be sun.
    Just thinkin' about tomorrow,
    Clears away the cobwebs and the sorrow, 'till there's none.
    
    When I'm in a day that's gray and lonely,
    I stick up my chin and grin, and say,
    Tomorrow, tomorrow, there's always tomorrow,
    It's only a day away.
    
    Laura

	Dear Lord, we're asking for your loving care
	to help little Spencer whose pain we share
	get through this time of worry and pain
	by watching over his family and being near,
	guiding them beyond the frustration and fear.

	The rest of us are wishing for the best -
	we know that this is yet another test
	of the strength that bonds the Thomas-Novells
	(one key to helping Spencer get well).

	He's a "big" little boy with a winning spirit
	who with Your love will get through this.
	Please help Wendy and Mark, Griffin and Baby N
	to keep their faith and hope strong
	as they move forward one day at a time...

------------------------------------------------  
Wendy & family:

Many times during the day, my thoughts turn to your situation and I try to
imagine the trauma you must be feeling to have to deal with such a serious
event - along with the normal daily strife of family life - and I really
*can't* imagine going through it. But, I know you have what it takes to
handle things as they come and I wish you strength along the way.

-Cori

    Wendy,
    
    I wish I could send you strength over the wires, but please know that
    you are all in our prayers.  I can only imagine the added pain the
    uncertainty of Spencer's illness is bringing to you !  Many wishes for
    a quick and happy resolution.  
    
    Sharon

    My special prayer which I would like to share with Spencer....
    
    God is with me ...
    God is near me ...
    God is by my side.
    
    Yes He loves me ...
    Yes He needs me ...
    And with His strength I'll thrive.
    
    He is my joy ...
    He is my love ...
    He means so much to me;
    
    And with these thoughts ...
    That sooth my soul ...
    I'll make each new journey.
    
    A brand new morning,
    A brand new day.
    I begin in which I pray;
    For God to be with me all day long,
    His love for me is my heart's song.
    
    Love and Prayers to all of you!
    
    ...Lori

    Hi all.  Wendy asked if I'd coordinate the offers for help she's been
    getting, and I'm happy to do what I can.  She and I will be talking
    soon to figure out logistics.  
    
    In the meantime, if you'd like to offer something specific, send me mail
    and we'll figure out how to proceed.  
    
    Lynn
    WREATH::LYNN
    
    
    
    
    

    Wendy,
    
    Hoping and praying that Spencer continues to improve!
    
    marianne

From the Kelleher household......all our prayers
for a speedy recovery for Spencer and for the 
well-being of Wendy, Marc and Griffin!!

Donna & John

    
    	I've only got two seconds to enter this but I know that a lot of
    your are waiting for any word on Spencer.
    
    	His lab work came back today essentially unchanged:
    	BUN - same
    	Creatinine - down .1
    	Hematocrit - up 1
    	
    	these values fall within the margin of error for lab tests and so
    we still don't have an upward trend yet, instead we're in sort of a
    holding pattern. This is the first time though that his hematocrit has
    not fallen significantly so that is good.
    
    	There is still lots of blood in his urine and he has the weekend
    off with his next appointment with the Dr. being on monday.
    
    He has an appointment with the pediatric nephrologist on April 12th, we
    should have some sort of definitive word at that point.
    
    	Until then, it's still the waiting game but the fact that he is not
    getting worse is very encouraging.
    
    	Take care, I'll keep you posted.
    
    			Wendy
    

    Wendy,
    
    My heart goes out to you and your family.  Spencer, you and your
    family are in my thoughts and prayers. If I may be of any help
    please let me know.    
    
    My three year old had kidney problems when he was six days old and was
    operated on at six months old. The doctor's at Children's Hospital in 
    Boston are excellent.  The kidney specialist we see is uriologist 
    Dr. Craig Peter's out of Boston Children's Hospital.
    
    Please take care of yourself.  This is the one thing I learned the
    hard way.  You will need your strength to get all of you through
    this ordeal.  
    
    My Prayers to you all,
    
    -- Pat K.
    
    
      

    	Spencer and I spent Easter morning at Urgent Care.

    	We are starting to get used to living in chaos and being at the
    Doctor's in a moment's notice. Marc stayed at home with Griffin to
    start the Easter dinner while I took Spencer.

    	Spencer had what can only be described as "green scum" in his wet
    diaper (no stool) along with the "regular" blood. After running a few
    tests and checking his vitals, the Doctor, still didn't have a clue
    what it was but told us it was the weirdest diaper he had ever seen. It
    may be blood breakdown, it may be an infection that is not responding
    to the augmentin, it may just be the healing process.

    	I fully expected the Doctor this morning to tell us that Spencer
    had to go back into the hospital. 

    	Instead we got a "SLIGHTLY IMPROVED" on Spencer. Spencer's blood in
    his urine has gone from a 4+ (highest) to 3+ (there should be 0). They
    did find casts (kidney cells) in his urine which although bad, only go
    to prove that there is definite kidney involvement.

    	We don't have anymore tests planned until we see the specialist
    next week. In fact, we don't have to bring him back unless there is a
    significant change or unless something shows up in his pending lab work
    that needs to be addressed. This is good as it is getting harder on the
    Mama and Daddy (and Spencer) to keep bringing him to the labs and
    holding him down while they take the blood.

    	Spencer is pale, exhausted, and he is starting to act out (well who
    the heck wouldn't) with anger and lots of whining. He still has a sense
    of humor though (after all he *is* my son ;-)) and I'm glad to see that
    keep shining.

    The Doctors still tell us that he is in a tricky situation and needs to
    be carefully watched for a "long time". (I have no idea what this means
    and I've decided to wait until we talk to the specialist to explore it
    further).

    For now, though, I think it's almost safe for us to take a semi-deep
    breath.

				Wendy

    Wendy,
    
    We were on vacation last week and I just read this note.  So sorry to
    hear about Spencer.  I'm pulling for all of you.
    
    Susan

Wendy,

I heard something on the radio (KCBS news station in SanFranciso area)
last Friday on my way home from work - I was really just half-listening,
but it was a story about the E. Coli.(?) bacteria (the one in undercooked
meats...) and at the end they were listing some of the possible symptoms
and the last one was "acute kidney failure".  I don't want to scare anyone,
but I just thought I'd mention it since the first thing I thought of was
Spencer.  May or may not be relevant, but just FYI.

Continued strength to you all and best wishes for notable improvements
in the near future.

Hang in there,
-Cori 

    Wendy,  My thoughts are still with you and your family, especially
    Spencer.
    
    I was just wondering tho from reading your latest update on Spencer,
    you mentioned that he was pale.  Did they doctor put him on some sort
    of iron supplement to make up for the lost iron that he is losing
    through the blood in his urien?   
    
    My Prayers and thoughts,
    
    Liz

    
    	Actually that's one of the problems, he is losing a lot of blood
    but we can't give him iron (in food or supplements) because iron is
    too toxic for weakened kidneys to breakdown.
    
    	He also has to be on low sodium and low potassium for the same
    reason.
    
    	The best we can do is standby and hope that his blood count does
    not go too low. If it does, then the next step is a blood transfusion
    from Marc.
    
    	And as far as the E. Coli, this was actually an initial
    consideration, I think it has been ruled out but I'm not completely
    sure. Something hit him fast and hard and it had to be something pretty
    darn powerful to make him so sick so fast.
    
    				Wendy
    

    Wendy,
    
    Has Marc donated blood for Spencer yet?  I'm sure you should know that
    sometimes the need for transfusion arises quickly, and if blood has not
    been processed, you are not able to use the specified donation.  A few
    years ago, it took 48 hours for processing/typing/screening blood
    before it could be used, this may have changed, but should be looked
    into if you have plans to use designated blood for Spencer.
    
    you're in my thoughts
    beth

    
    Wendy,
    
    I'm so sorry to hear about Spencer.  I'm the other mom who has
    two big baby boys and had them around the same time you did and
    I always read your notes to find out how Spencer and Griffin are
    doing.  I can only imagine what you and Marc are going through
    right now.  I did have a 'dilemma' (I guess you can call it that)
    after I had Joshua (now 8 mos.) and that scared the heck out of
    me and my husband.  I hope I never have to go through that again
    and I really hope that Spencer gets better soon.  My heart goes
    out to the little guy and to you and your family.
    
    I work in ZKO.  If there's anything that I can do, +please+ send
    me mail.  TLE::PELLAND
    
    RE: E-Coli.  I saw a program that discussed E-coli.  Most, if not
        all of the children had severe abdominal pain and diarrhea.
        I didn't see that in Spencer's symptoms that you put in.
        But I'm not an M.D. and each case I'm sure is different.
    
    My prayers are with Spencer and your family.
    
    Please keep us posted because I'll be thinking of him.
    
    -Chris

    You and your family are in our thoughts and prayers, as well.
    Hoping for a speedy recovery for Spencer.  Hang in there.
    We're all thinking of you and sending many hugs your way.
                                  
    The Whitmore family

    Wendy,
    
    My thoughts and prayers are with Spencer and the whole family.
    
    Ginny
    (usually a read-only noter)

    My thoughts and prayers are with Spencer and the whole family.  Please
    take care of yourself.  If you want to call and vent out please do.  I
    am at 237-3145.
    
    Jay Minisandram.
    (Usually a read-only noter).

Wendy, stay strong as you are.  I will keep you and your familiy in my prayers.
Please take care of yourself.

Love,
Mo
(A Mostly Read Only Noter)

    Praying for healing, and for strength & comfort for you and your family
    as well.
    
    In Jesus' Love,
    Lisa (a mostly read-only noter)

   Wendy,

    I haven't been in this file for weeks and only just read thru the string
    about Spencer !  My heart and my prayers go out to all of you.  Please
    take care of yourself along with Spencer, Griffin & Marc and know that
    we're praying for all of you.

    Debbi J

    
    Wendy or Marc -
    
    Any update on little Spencer?
    
    Carol

    	A milestone of our own.

    	We have gone one week without rushing off to a Doctor. Spencer is
    doing very well at holding his own. He still has some blood in his
    urine and everyone comments on how pale he is but he's up and about and
    had great fun this weekend being outside.

    	Tomorrow we see the specialist and (hopefully) we may get some
    answers to questions like:

    	Just what the heck happened anyway?
    	Does he have permanent damage to his kidneys?
    	Does he have an auto-immune disease (Suggested by one of the Dr's
         here)
    	Will he have life restrictions?
    	Will this happen again?

    	I was fortunate enough to catch the show "Turning Point" last week
    that did a story on children who have leukemia. The story took place
    at Children's Hospital in Boston which is where Spencer will go if he
    needs to be hospitalized or needs extensive testing and it was good to
    see the actual hospital and how it operates. I have also gotten the
    name of a Dr. on staff who operated on a student of mine's son's
    kidneys. It's amazing how many people have information to share.

    	But it was also beneficial for me to see that as bad as this was
    for us, it could have been far, far worse. I am grateful for what we
    got and for not getting what we might have gotten.

    	I'll be back in here on Wednesday with an update.

	Once again, thank you all for the responses of caring, we are so
    very, very thankful.

    				Wendy

    	Well I'm stunned.

    	What I had thought (hoped) was going to be a final checkup to
    ensure that Spencer was well on his way to recovery turned out to be
    anything but that.

    	We have become the parents of a chronically ill child.

    Spencer has three giant hurdles that he has to go over in the future:

    	His overall diagnosis is: Post-infectious Glomerulonephritis with a
    secondary urinary infection.

    	1. One of his blood tests came back bad, they repeated it yesterday
    and if the numbers are still extremely low, he needs to be "extensively
    worked up and aggressively treated" at Dartmouth (I didn't pursue this
    any further, at this point, I just don't want to know).

    	2. In about 2 months, Spencer will have to have a test where they
    inject dye into his bladder to look for reflux, there is a possibility
    he is refluxing back up to his kidneys and creating a chronic
    infection.

    	If that test is positive (And I can't be near him when he is having
    the test because of the x-rays), then there is a high probability of
    surgery.

    	3. Spencer needs to be completely worked up (blood urine, weight
    blood pressure and heart rate) every month for the next *year* before
    he will be given an "all clear".

    	Within that year time frame, he may relapse, the condition may get
    worse due to stress on his body (infections, chicken pox, etc). If he
    is not clear at the one year point, then they have to "extensively work
    him up and aggressively treat him" (Again, I did not pursue this, enough
    is enough).

    	They did lift any restrictions on him (which means he can eat
    bananas and raisins again) and said to not give him any special
    treatment, essentially to not treat him as a sick child. He is fine
    today but like a time bomb, he could go off at any minute and there
    would be no way we could prevent it - this is all an internal condition
    that Spencer is fighting.

    	I'm just numb. I remember watching the show about the kids with
    leukemia and seeing that the children had to be tested every 9 weeks to
    be sure that the cancer was not returning. I wondered how the parents
    survived with the not knowing, how they could sleep at night, how they
    could still go on with some sort of semblance of normalcy in their
    lives with this constant threat always hanging over their heads.

    	I wondered how they could all survive.

    	I guess our family will be finding out.

    				Wendy

Wendy,

First, best wishes for you and your family.  I've been thinking about you
folks since you entered the first note.  As I read .46, I recalled a coping
mechanism that I had read about -- it was a story about a family who had
to deal with a situation somewhat similar to yours, aggravated by the child
(and parent) needing to live in another state for extended periods in order
to get the best medical care.  At the end of every day, the mother & child
would discuss what was good about that day.  I think I recall that Spencer
isn't particularly verbose at this stage in his development, but I suspect
you could tailor this if you think it would help you all cope.

I'll be thinking about you all and keeping an eye out for updates....

- Deb

Wendy,

	Best wishes. We all cope with what life throws
at us in different ways. Sometimes we need to sit down
and actually work at it. IMHO you need to go back to the
doctor and find out exactly what he means by "extensive
workup and aggressive treatment". You and your family
need to set your own expectations of what the next year
is going to be for you and you can only do it well if
you do it in an informed and planful manner. While I'm
sure you are all very scared for Spencer you need to 
know what can happen so you can prepare yourself and
others (especially Spencer) for what may occur. Once
you know the worst you can feel a lot better when it
doesn't turn out that way and celebrating those little
miracles along the way to recovery always is a little
sweeter. 

Mike

Wendy, 

Regarding the reflux test, and UTI in general, you should open
parenting v3 and read notes 1017 and 181. 

My husband and I are looking at a definite kidney ultrasound with our 
9 month old daughter, and possibly a VCUG (the test you described) if 
any of her monthly urine cultures again come out positive for UTI.  

I found those notes when the doctor mentioned the tests, and it made 
me feel a lot better.  There is a broad range of people in this file 
who have gone through them, and even some whose kids have had the surgery 
for reflux.   

For me, I felt a lot better having read those notes.  I thought you might 
want the pointer.  

Hi

My daughter, Haley, had both the ultrasound of the kidneys and the dye 
injected into the bladder test.  She was 8 months old at the time.  
Thank god everything was o.k. - just a fluke infection that hasn't returned 
again.  I tell you having an 8 month old with a temp of 105 is pretty scary!

I can tell you that the tests were not as bad as I had anticipated.  The one
when they injected dye I thought would be the worst but she handled it very
well - It did take alot longer than is should have though cause she refused
to pee.  Even with it taking so long she handled it very well - alot better
than myself.  The ultrasound was painless but she had had it by then and seemed
worse with this than w/the more painful of the two tests.  

Good luck to everyone!  You can write to me offline if you'ld like.

Kirsten

    Now that you have more information on what is going on inside Spencer,
    let me go into more detail about my daughter who had surgery when she
    was eighteen months old..
    
    Alison was totally healthy when she was born, or so we thought she was.
    When she was five months old I took her home to visit my parents (I 
    lived in Hawaii at the time).  One morning she woke up with a very high
    fever (105) and I rush her into the urgent care clinic.  They did a 
    urine on her just as a routine test, not really thinking that it was
    anything other than a "virus".  The test came back showing that she 
    had a severe urinary tract infection.  She was treated with antibiotics
    for ten days and within two weeks of going off of them she was running 
    a high fever again.  Same routine again because maybe the antibiotic
    the first time was not strong enough.
    
    After I returned to Hawaii (about three weeks later), Alle woke up
    again one morning with a fever of 106....panic!!!!  I rushed her to 
    the clinic where they took her right out of my arms and put her into
    a bath of ice cubes (boy did she scream - poor little thing).  After 
    they got the fever down to around 102 they did a bladder tap on her.
    At this time they decided to admit her to the hospital and do some
    major tests on her (she was 6 or 7 mos then).  They put her to sleep
    and went up through her vagina (urethra tube) with a scope to have 
    a look around her bladder.  This is when they found that she had
    reflux on both sides of her bladder.  She had an IVP, where they
    injected dye into her and take xrays every few minutes to watch how 
    it went through her kidneys.  This test confirmed what they had
    suspected, that she had reflux on both sides and when she strained 
    to urinated the urine would be pushed back up into her kidneys and
    stagnate - causing an infection.  
    
    They decided to put her on antibiotics everyday until she was two
    years old and then do the surgery to repair her bladder.  During this
    time she was monitored very closely for infections, bladder taps, 
    ultrasounds, IVPs, etc... She did well for awhile but started at 
    about a year to become resistant to the antibiotics and became infected
    again and again.  When she was eighteen months old they decided, after
    another IVP which showed that one of her kidneys was starting to
    atrophy, to do surgery on her.  She was in the hospital for about
    four days but by the second day after surgery was running up and down 
    the halls (Mom and Dad didn't fare so well).  She has had a couple 
    minor infections since then but overall has been very healthy and 
    is now seventeen years old.  She will never be able to donate a 
    kidney but oh well...
    
    If Spencer does have reflux this could explain the infections, and
    surgery would be a good option.  Kids do so much better than their 
    parents.  There were alot of kids in the hospital when Alle had her
    surgery and the parents were always the ones who looked the worse
    for wear.  I just wanted to give you a similar story to yours and
    share a happy ending with you!!  Take care.
    
    Vickie  

    
    
    I have friends with a baby girl who was born with a reflux condition.
    The doctors could not operate on her until she was 1 year old. They
    wanted her body to be larger before doing surgery. Anyway, they had
    a nightmare of a first year: constant infections and antibiotics.
    
    But now that Emily has had her surgery, she is doing extremely well and
    is perfectly healthy. If it turns out that Spencer does have reflux, I
    think you will end up hearing a lot of similar bad stories with a very
    good ending.
    
    Again, best wishes for Spencer, you and your family.
    
    Patricia.

    
    	Spencer and your entire family are in my prayers, Wendy.
    
    	Take the offers for help that come your way.  Little things
    	will go a long way to sustaining you.
    
    	Karen
    

    Wendy,
    
    I know exactly how you feel. When we found out at a routine 6 month
    exam that Avanti had hip dysplasia and since it was detected this late
    she could need surgery, I was numb. I did not know how to react. She
    was taken to New England Medical Center, a dye was injected in her hip
    and Xrayed, CAT scanned, etc under anaesthesia. I could not stand it
    but during such times you get the strength to get you thru. I don't
    know how but you do. Avanti was under anaestesia every month for the
    next 6 months each time she had a body cast applied. She stayed inthe
    hospital for 3 days each time. The first time they had to redo the cat
    application twice since it did not come out right the first time. She
    hated being Xrayed or being CAT scanned. She would cry, scream and I
    had to watch her without breaking down myself. She could not sit, crawl
    or even lie down on her own. Her cast covered her from her chest to her
    ankles. She had to lie on a L shaped frame so that urine, etc could be
    channeled into bedpan via plastic sheets from the cut in her cast to
    allow for excretion. She had to be strapped to this contraption. After
    seeing her like that for 2 days I vowed to do something to get her out
    of it. I was ready to hold her all nite but not let her be strapped to
    this thing.
    
    Anyway, she came out of her cast 1 day before her 1st b'day. But she
    went for checkups and Xrays every 3 months and progress was SLOOOOW. WE
    were looking at Hip surgery. But the progress was just enough to let
    the Dr wait and see how she progresses during the next few months. Each
    checkup was a heart thumper. I could not stand to hear that she had
    made no progress so surgery is required. The 3 monthly checkups became
    bi-annual and now they are annual. She is 5 yrs old, no restrictions on
    her activity and progressing. The dr says chances of surgery are almost
    nil but 2 more checkups are needed.
    
    I know how the wait can take a toll on everyone. SO please take careof
    yourself, have faith, keep up hope that things will progress faster. I
    remember that everytime I went with high hopes I was dissapointed but
    when I went with no expectations I was pleasantly surprised. So be
    strong (easier said than done), but the inital shock of hearing the
    scary words come out of the Dr's mouth will wear off and rational
    thoughts take over. 
    
    If you want to talk call me DTN 381-1285.
    
    Spencer will come out of this better than before. He is getting good
    care and he has parents that care for him deeply. 
    
    Our prayers and good wishes are with you.
    
    Shaila

Wendy,

I'm not very religious but am saying my version of prayers for Spencer and your
family.

My son is 9 months now but at 3 months had the dye test.  He had UTI's and they
suspected reflux.  Fortunately everything was normal.  We were told the test
is more difficult for boys since the catheter goes in through the penis.  Alex
handled it very well and didn't seem to be in much pain. Some of this could be
attributed to the technician who seemed quite skilled at inserting the catheter.
They had me stay in the next room where the doctor and technicians were and I 
watched the monitor as the dye was traveling.  My husband stayed in the room with 
Alex and held him still.  I imagine at 3 months old he didn't have as much fear 
about what was going on as a toddler might have. I think it helped that one of us 
could hold on to him and the procedure went rather quickly.

All best wishes,

Kathy

    Wendy,
    
    Having just been up at Dartmouth-Hitchcock for 4 days in January, I
    wanted you to know that we were very impressed with the place.  My son
    was diagnosed with Diabetes and the staff was wonderful with him (and
    his parents!).
    
    If you'd like more information please write me off-line.
    
    Linda

    AJ had surgery at 6 months old to reimplant both of his ureters, he
    weighed something in the vicinity of 10 or 12 pounds, he was under 5
    pounds a birth and extremely slow to gain weight.  Simply the doctor
    felt the infections would eventually shut down his kidneys, and without
    the kidney being corrected, the pull through of his bowel to the rectal
    opening, and the closure of the colostomy could not be achieved.  Plus
    this child was living daily on one or more anitbiotics, not good for
    such a tiny body.  
    
    It looked like a Ceaserian section incision, and since AJ had been a
    c-section baby, I felt his pain.  But like someone else mentioned, by
    the third day he was bouncing around in the crib, like nothing at all
    had been done.
    
    I am entering a separate reply, with a special prayer my aunt brought
    back from Branson Missouri for AJ.
    
    God Bless you all
    Lyn

    
    A CHILD'S PRAYER
    
    Many years ago, on a summer evening, a
    mother and her small child came to the 
    church to pray, just to say:
    
    	"Dear Jesus, we love you"
    
    The small child, in a anxious voice said,
    
    	"Momma, I don't know how to pray"
    
    The Mother's reply was
    	
    	"you are now in God's house.
    	 and all you need to do is
    	 tell Jesus that you love him."
    
    In a few moments the small child said
    	
    	"But momma, I love you!"
    
    The mother said
    	"My dear, dear child I love you also.
    	But Jesus loves us all, and we must love each other.
    	Then our day's journey will be a happy one"
    
    
    
    	author's note:
		To Robyn,
    		From your grandfather, Larry Kliesen
    
    
    
    (I have another at home, I keep near the phone called "Turn to God" 
    I will enter that soon)
    
    Lyn

    Finally some wonderful news.

    	We got a call from the Doctor last night and she told us that the
    blood test that we were concerned about has shown good improvement and
    that it essentially rules out what they were worried about (a systemic
    auto-immune disease).

    	Spencer will not have to go up to Dartmouth-Hitchcock for extensive
    testing, he has successfully passed the first hurdle.


	Oh happy day.
    
    				Wendy

    Wendy that's wonderful.  Amen.  Please continue to keep us posted as we
    will continue to pray.
    
    Mary

    Wonderful news. More crossed fingers and prayers from Reading, England.
    
    Gilla
    
    

    Whoever thinks that the power of positive prayer doesn't work should
    read this note!  That's great news!
    
    Y'all keep up the good work!
    Barb

    I need to enter this, it seems even more appropriate since Wendy has
    had some VERY incouraging news!  I too feel so excited about the
    progress, keep us posted!
    
    Lyn
    
    
    		TURN TO GOD
    
    Turn to God when you're in doubt.
    He can help you work things out.
    
    	If you've had a trying day.
    	Turn to God and have your say.
    
    When the future's looking grim.
    He'll be waiting, turn to Him.
    
    Look to Him in silent Prayer.
    Turn to God and He'll be there.
    
    And when your heartaches seem to go.
    Turn to God and let Him know.
    
    
    			Florence Yurichko
    
    

It's not just for kids, either.

    
    	And now it's little Griffin's turn.....
    
    	Last night a flying squirrel got into Griffin's crib and bit him on
    the ear, this morning Griffin had to have his first three of many
    rabies shots to come.
    
    	I just don't believe this.
    

    Oh, NO!  This is ridiculous!  What are the odds...?!
    
    Strength and courage to the little guy for the course of injections. 
    Do they still do them in the stomach (cringe)?  I suppose it's too much
    to hope that you somehow trapped the flying squirrel for testing... so
    that maybe it would test negative and you could stop the shots midway?
    
    Shazbaat,
    Leslie

    sending kind thoughts and prayers, for Griffin's recovery, and for mom
    and family continued strength!
    
    Lyn
    (things happen in three's, I sure hope NOT!)

	I DON'T believe it!!!  A flying Squirrel!!!

	Poor little Griffin.  My thoughts are with you all, good luck
	with this adventure.

	Karen T.

Geez Wendy and Marc!  Poor Griffin!

     Carol

    Gee poor Griffin having to go through all those shots at such a young
    age.  My prayers are with him for a speedy recovery.
    
    By the way Wendy, how did a flying squrial get in your house anyway?
    
    Continued strength for you and the whole family in these trying times
    of need.
    
    Liz

    
    	Aye, my life is a made for TV movie.
    
    
    	Griffin got his first series of rabies shots yesterday, a total of
    three shots in his thighs (not the belly which is what I expected).
    During the next 21 days, we have to bring him in on a regular shcedule
    (3 days, 4 days, 3 days, etc) to have more shots. Although everyone
    warned us that the shots are very powerful, the only reactions that
    Griffin had last night were a slight fever and sore legs with red
    marks. Griffin also holds the honor of being the youngest child at MTHP
    to recieve rabies shots. :-(
    
    	Last night Marc-the-dragon-slayer Nozell caught (what we thought
    was) the squirrel. It is indeed a flying squirrel (the State agency had
    told us that there was no way it could have been a flying squirrel and
    that it must have been a bat).
    
    	The good news is that the squirrel is dead and on it's way up to
    the State lab in Concord.
    	
    	The bad news is that she was an actively nursing female which means
    we have a nest somewhere. (Our house is very large, very open, and half
    finished, it is not going to be easy animal proofing this).
    
    	Marc thought he had gotten scratched by the squirrel through his
    leather gloves but the animal control person said that it was more
    likely a bite than a scratch, Marc is currently in discussion with his
    Dr. to see if he should be starting shots.
    
    	If the squirrel tests negative, Marc would not need shots or would
    be able to discontinue shots. Griffin needs to continue however, as we
    don't know for sure if this was the squirrel that bit him.
    
    	If the squirrel tests positive, I don't know what will happen. I've
    heard that entire families have had to go through the rabies shots. Not
    a fun thought when you are pregnant.
    
    				Wendy

    Wendy,
    
    In most towns, the "Dog Officer"/Animal control person will handle this
    situation for you.  They should be able to come into the house and find
    the nest, if it's in the house.
    
    I remember a bat flew down my mom's chimney one year - it took them two
    hours, but they eventually caught it with a net, and made a point of
    telling her it was good that she didn't try to catch it herself (not
    that she was likely too (-:).
    
    If you're town won't handle it, you might want to try an "exterminator"
    type person - they have better equipment, and can handle this.  Or
    check with a local Vet, animal hospital, or perhaps some colleges that
    deal more with the agricultural aspect of things.  
    
    Good luck!
    Patty

The old series of painful abdominal injections in obsolete.  The new rabies
treatment is no picnic, but it's much better.

    
    	Griffin has had a high temperature reaction to the rabies shots.
    Without Motrin and tylenol every 4-6 hours it shoots up out of control.
    Apparently he is the first to have this kind of reaction (wouldn't you
    know) but because there are so few kids his age who get these shots
    it's hard to make any kind of conclusion.
    
    
    	If we can not get it down and stabilized by tomorrow morning when
    he is scheduled to have his next series of shots, they will not
    be able to continue the treatment.
    
    
    	I just can't even think of the possibilities.
    
    				Wendy

    Still praying for your kids and you..

    Dear Wendy and Marc,
    
    This is a truly incredible story.  I wish this wasn't my last day
    at Digital I'd like to know that *everything* turned out OK.
    
    Take good care of yourselves.
    
    Jodi-

    
    	After a long conference with two Doctors this morning, we have
    decided to continue the shots. (not that we really have much of a
    choice anyway).
    
    	Griffin continues to have a high fever but with both Tylenol and
    Motrin, it stays down at 101. He also has started showing a rash on
    both of his arms that may or may not be related.
    
    	Basically we have to watch him like a hawk and bring him back in if
    anything changes. Our next appointment is Tuesday, the nurses at the
    Doctors office were taking bets on whether or not they would see us
    before then. I'm afraid our family has quite the reputation at the
    Pediatricians.
    
    
			Wendy

    
    
    Poor little Griffin.  What a thing to go through at such a young
    age.  Wendy, how is Spencer doing?
    
    Chris

    Wendy,
    
    here's a thought...
    
    have you or the doctors considered liquid Advil (or equivalent) as a
    substitute for Tylenol/Motrin? One of the associate pedi's at Lahey
    gave us a refillable prescription for it a while back, claiming it was
    quicker and more effective than children's Tylenol. Might be worth 
    checking into.
    
    In the meantime, good luck!
    
    Freddie

    	Oh yeah, Spencer.

    	Spencer is doing a great job of hanging in there. He is still pale
    and presumably anemic but everyday that passes is one more day to
    getting stronger.

    	He is still not scheduled for his dye test yet, I'm guessing that
    they will want to look at the next series of lab work (in about 2
    weeks) before we even talk about that.

    	This week I took him to a homeopath (I figure at this point it
    can't hurt) and he gave us things to counter the anemia and build up his
    blood and kidneys.

    	The jury is still out on homeopathy for me, I know that I have had
    sporadic good results with it, but I figure, at least this way we are
    actively doing something for Spencer instead of just sitting around and
    waiting.
    	
    				Wendy

>    have you or the doctors considered liquid Advil (or equivalent) as a
>    substitute for Tylenol/Motrin? One of the associate pedi's at Lahey
>    gave us a refillable prescription for it a while back, claiming it was
>    quicker and more effective than children's Tylenol. Might be worth 
>    checking into.


Motrin and Advil are different brands of ibuprofen.  I have heard people
say that one can be more effective than the other ... strange ...

Because ibuprofen (Advil/Motrin) and acetaminophen (Tylenol) are different 
chemically, they can be used together for better anti-pyretic effect (fever
lowering) ... and if they can only keep it down to 101 with that combination,
this is pretty serious stuff!  Combine that with the fact that because of the
liver toxicity of Tylenol (about 1 gram ... 2 extra strength tablets) could
probably cause complete liver shutdown in a kiddie of Griffin's age, then
they are really having to be careful.

Sheesh ... what an incredible series of events ...

Stuart

    I can't even begin to think what to say here, other than to say our
    hearts and minds are with you, we all send our love. Stay strong.

    Wendy,
    
    I just read your whole story.  Unbelievable and so unfair.  You are all
    in my prayers.  As I know first-hand from the time my Caileigh was
    sick, more of the "Parenting family" are praying for you than you even
    realize.  It does help.  Try to remember to take care of yourselves.
    
    Tracy
    

    
    	might as well put it here.
    
    	My Dr. has put me on medical leave for the next two weeks to "get
    back on my feet". Food and sleep are the highest priorites, I'm really
    looking forward to this and of course now that I know I can relax, I'm
    twice as tired as I was before.
    
    	I'll let you know how things are when I get back.
    
    				Wendy

    Wendy,
    
    I'm glad to hear that - you really sound like you need the rest.
    
    Enjoy !
    
    -Joy
    

    Wendy,
    
    Take care, I do hope we can touch base with one another from time to
    time.  It's amazing how much we can cope with, when the fatigue level
    is under control.
    
    I'll keep praying for all of you.
    
    Lyn
    

        Carol duBois asked me to enter a note here as she will
        not be at work this week to enter it herself.
        
        Her son Justin (19 mo.) has been hospitalized for pneumonia.
        The family would appreciate your prayers and warm thoughts
        and hugs.
        
        Thanks,
        Dan

Dan,

Please pass along my thoughts to Carol for her as well as Shellie, Evan and
Justin  - I'll be praying for little Justin - he sure has had a tough 
young life !

With prayers & hugs,
Debbi Jancaitis

    	And lastly, please keep the littlest Nozell in your thoughts and
    prayers. I have been on leave for the last two weeks and was finally
    starting to feel like a person again, and then I got a phone call last
    Friday.

    	It seems that the results of a blood test suggested by Spencer's
    pediatrician indicate that not only am I not immune but I have been
    exposed to and contracted Fifth's disease in my first trimester. That
    coupled with being so sick, losing weight and not even showing by the
    13th week of my third baby have the Dr.s somewhat alarmed.

    	I have to go in for many test, a high resolution ultrasound, and
    they have asked us to start thinking about the possibility of medically
    terminating the pregnancy if the tests come back bad. Apparently the
    greatest threats during the first trimester are brain and heart
    dysfunction.

    	We won't know for sure until around 19 weeks and even if the tests
    come back clean we wouldn't know if there is brain dysfunction until
    after the baby is born.

    	Shh, did you hear that noise? That was the sound of my heart
    finally breaking in half.

    				Wendy

    
    Hi Wendy,
    
    How much more can go wrong?  My heart goes out to you and your family.
    Please take care.
    
    Rochelle
    
    P.S. With the exception of the positive test, I had the same concerns
    about my third pregnancy.  Maybe the difference could be the she_nozell
    hormones?

    Dearest Wendy,
    
    What else can be said? ALL my love and strength is sent your way. My
    heart breaks with you, how can it not? Stay as strong as you can. Just
    reading about you all these yrs has told me you know how, even if you 
    don't fell you can any longer. ONE GREAT BIG HUG for all of you.
    
    Sherry

I don't know what to say.  Wendy, you have my hugs and sympathy, my 
hopes and prayers for a better time to come soon for all of you.  

Leslie

Dear Wendy and Family,

We are praying for you!  For healing, for wisdom and guidance for you 
and the doctors, and for God's Peace to be with you in these scary times.

In your exhaustion and illness, you may have lost weight, but we're 
praying for the health of you littlest one!  (I also gained little 
weight in the beginning of my second, compared to my first... Hope you
can keep trying to get some rest!)

All our love,
Tanya and Family and friends

Wendy, I don't have the words to say. I can only pray for encouragement for 
you and your family, for emotional, physical and mental health and peace, and 
for the sustaining of the love between all of you. 

Chele

    I'm sitting here with tears in my eyes, wondering what to say.....
    
    Lots of prayers, keeping fingers and toes crossed, lots of warm wishes
    and gentle encouragement.  I wish there was something practical I could
    do from this side of the pond....
    
    Although I don't even know you and your family, lots of hugs to all of 
    you.
    
    Gilla, Chris and Katrina
    

   Wendy,

     I just wish I knew what to say to give you some comfort during this
     (yet another) trial !  I just want you to know you're all in my
     prayers................

    Debbi

    Wendy,
    
    The words fail me! Thinking of you and your family. I can only hope
    that you end up getting good news.
    
    Patricia.
    

    Has anyone heard how Justin is doing?
    
    Sherry

    re :           <<< Note 715.98 by WMOIS::DIPASQUALE_S >>>
>>                                 -< Justin?? >-
>>
>>  Has anyone heard how Justin is doing?
>>    
>>    Sherry

    I don't think Carol will mind if I answer from a note I got
    from her a few days ago !  

From:	CSC32::DUBOIS       "Discrimination encourages violence" 16-MAY-1994 15:04:22.65
To:	MROA::DJANCAITIS
CC:	DUBOIS
Subj:	Justin

Thank you, Debbi.  VERY much.

Justin was in ICU for 4 days.  He was released Friday from the hospital,
but he has to stay our of daycare for 2 weeks.  Finding someone to care for
him is difficult; he's in constant pain and very frightened.  He clings
to me like a tree frog.  This is almost the first time he hasn't been attached
to one of us for about 10 days!!!!!!!!!!!  He feel asleep in my chair when
I went to answer the phone.  I'm taking advantage of it.  :-}

   Thanks again,

    Carol

    
    
    	Just an update on our kids:
    
    	Griffin goes in for his last rabies shot tomorrow morning, he no
    longer gets the raging fever but simply gets a mild fever that can be
    controlled with just Tylenol. One milestone down.
    
    	Spencer is going into the hospital on Friday for blood work and his
    VUG. I was under the impression that he would only have a catheter for
    a few minutes but apparently he will have it (without sedatives) for
    about one hour. We expect to have a very, very angry shild when it is
    over. We should hear sometime next week if surgery is a consideration.
    
    				Wendy

	Wendy,

	Sending you a great big hugs, and sending many prayers for each
	and every one of you (especially baby #3) heavenward...

	Karen

I've hesitated putting something in here because 1) as a moderator I didn't
feel I should start a new note, just for us, and 2) Wendy was going through
such horrible troubles I didn't want to slow down the support she should
rightfully get.  It sounds like things are at least holding steady for her
now, so if no one minds, I'll update you on my younger son, Justin.

Justin is 19 months old.  I had asked for your opinions (or discussed my
trepidations) about tonsil and adenoid removal about 3 weeks ago.  After 
talking with the ENT we decided it *was* in Justin's best interests to have
the surgery.  The long form of the story is in IKE22::WOMANNOTES-V5 in notes
10.177, 10.179, 10.181, 10.197, and 10.199.  The short story is that he had
the surgery, but didn't do well.  He had a hard time coming out of the
anesthesia, and the doctor kept referring to him as "very fragile".  He went
home from the hospital the next day (Saturday).  By Sunday night he was in
the emergency room.  He had a terrible cough, was in terrible pain, and we
were sent home after the doctor treated him for 2 things which he didn't know
if Justin had or not.

Monday evening Justin was put into the Pediatric Intensive Care Unit.  He
apparently had pneumonia.  He was a mess, and I truly believe he might have
died that night had we not taken him back to the hospital.  He had a terrible
night there in ICU.  After 4 days in ICU and 1 day in the regular pediatric 
ward, he was sent home with us.  Either Shellie or I or both of us were with
him the entire time he was hospitalized.  We were told he could *not* go into
daycare for the next 2 weeks, and since we couldn't find anyone else to watch
him (who didn't have children and who was healthy) then I stayed home with him
last week and Shellie is staying home with him this week.  She is taking leave
without pay, and just got laid off from her job.  Her boss let her push her
last day out a week so she could be home with Justin now.  We are hoping the
doctor will let Justin go to daycare for Shellie's last week at work, since I
am all out of vacation time now.

Justin was still in incredible pain, but took a turn for the better Wednesday.
Whereas before the surgery he would only eat 20-24 ounces of formula a day,
plus very little solid food, on Wednesday he ate 41 1/2 ounces!!!!!!!!  Each
day since then (until today) he has had either 30-someodd or 40-someodd ounces
plus more solid food than he ever ate before.

I just spoke with Shellie and she has told me that today Justin is lethargic 
and not eating much.  I am worried, of course, and we could use your 
prayers/warm_thoughts.  Thank you. 

     Carol

    Justin is in my prayers....may the angels watch over your little angel.
    
    -Linette
    

    
    Carol,
    
    Lots of well wishes for Justin.  I really hope he gets better soon.
    How is your other son handling all of this?  
    
    My thoughts and prayers are with your little one.
    
    Take care of yourself,
    Chris

    Carol,
    
    Wishing a very quick recovery for Justin. 
    
    Don't worry too much (easier said than done!). He has been so sick that
    it probably is normal for him to have up and down days. As long as
    he seems to be improving overall, he must be on his way to recovery.
    
    My thoughts are with you and your family.
    
    Patricia.

    
        Prayers and hugs from me too for Justin and family. It's not
    easy when a child is very sick....  I remember how hard it was for
    me when my son (now 21 years old) had meningitis and they gave him
    his last rights. He had just turn a year old when he had it. 
    
       Take care,
    
        Rose

Justin doesn't seem too bad now.  He may have just had a bad day.  I'm still
cautious.

Evan is doing very well.  We are very proud of him.  We tried to have him
spend some time with friends (both young and old) while we were at the 
hospital, and he had a blast.  He also just graduated from kindergarten,
and has a gymnastics demo tomorrow where he expects to win a ribbon.  
He has been very loving (as usual) toward Justin, and doesn't complain about
all of the attention Justin has to have.  Their godmother flies in tomorrow,
and I expect she'll spoil them rotten. She's already promised to buy Evan
some Power Rangers something.  :-) 

     Carol

    
    Carol,
    
    	That's oaky, I'm just about ready to pass this note on anyway.
    
    	Spencer had his test on Friday and the results are normal which
    means that they will not be considering surgery. (one more milestone).
    
    	He still needs to be checked every month for the next 11 months but
    it looks like he is doing a good job of healing.
    
    	So Griffin is safe, Spencer is safe, now we can start working on
    the new baby.
    
    		Wendy who is breathing just a bit easier these days

Yay, Wendy and Marc!  Two down, one to go!  :-}

   Carol

    
    
    	Quick update on Spencer:
    
    	Hismost recent blood work came back completely (low) normal!
    
    	His C3 is (low) normal (if it was not in the normal range they were
    going to insist on a kidney biopsy this time.
    
    	His hematocrit is (low) normal, no more anemia.
    
    	He still has blood in his urine and still needs to be checked for
    the next year. (11 months ;-)) because it's possible that things could
    still go "wrong" but right now it looks like eveything is in his favor.
    
    				Giant Sigh of relief,
    
    					Wendy

    
       Wendy,
    
        I'm so glad to hear that Spencers doing so well.  Good luck!
    
       Take care,
    
       Rose

Ditto.  I'm glad to hear things are better.  Anything new on the unborn?

My 20 month old son Justin is doing better; gaining weight like a normal
kid for the first time in his LIFE.  Want to get him checked out again, maybe
tomorrow.  Two weeks ago, though, he had gained 1 3/4 pounds in 13 days!!!!
At this rate, he may get on the charts some day.  :-)

      Carol

    Wow - the way my last couple of days have gone, it was great to get in
    here and see some good news!  Keep it up!
    
    Barb

    Wendy and Carol -
    
    I'm so glad to hear the good news!  Both of you have been thru
    so much with your little ones.  You (and your families) have
    been in my thoughts alot lately and I am relieved that Spencer
    and Justin (And Griffin, too!) are all doing better.
    
    Lila
    

    	No, no word on the littlest one yet. It's basically been a waiting
    game while we sit around waiting for the baby to get big enough so that
    we can run some tests. I'm scheduled for an amnio tomorrow (Tuesday)
    and at the very least we will be able to see and measure the baby. WE
    won't get the results of the amnio for a few weeks and the high res.
    ultrasound is still two weeks away.

    	I still haven't gained weight (-3) at 17 weeks and I still haven't
    felt the baby move (while this is considered normal, I felt my other
    two much earlier). I think that seeing things tomorrow will do a great
    deal in alleviating some of my fears.

    				Wendy

    
    Well it's over.
    
    	We went in for the amnio yesterday and my fears of getting the big
    needle in my stomach were for naught. The ultrasound showed that the
    baby had died three weeks ago.
    
    	I am scheduled to deliver this afternoon.
    
    				Wendy

	Oh Wendy, I'm so very, very sorry.

	Please know that you, Marc, and the children are in my
	prayers, my thoughts, and my heart today.

	Karen

    Wendy and Marc,
    
    I am so very sorry, my thoughts are with you.    
    
    Take care,     
    Vickie

	God works in mysterious ways.

	My thoughts are with you and your family, you've been through
	so much.

	Take Care,
	Karen T.

    Wendy, you and your family are in my prayers also.  God is watching
    over you.
    
    Mary

    My thoughts and prayers are with you all and I'm sure God had a good
    reason for doing what he did.
    
    Next week is my last week of work (got TFSO'd) and I will be thinking
    of you and your family, as Spencer recoups from his Kidney problem and
    gets better, and you take the time to heal after all you have been
    through.
    
    Take care.
    
    Liz 

    Wendy and Marc,
    
    So sorry to hear your sad news.  My heart goes out to all of you.
    
    Susan

    Oh Wendy,
    
    I am so, so, so, very sorry.
    
    Take care of yourself.
    Tara

    Wendy
    
    My thoughts are with you...Take care of yourself.....
    
    Remember, God works in mysterious ways...
    
    Anne Marie

    
    
    
    Wendy and Marc,
    
    I am so sorry... My thoughts are with your family.
    
    
    Laurie

My thoughts are with you and your family.....

May the knowledge that people care about you and
your family give you strength thru this time of need.

    Wendy and family - words can't express my sympathy.  You are all in my
    thoughts and prayers.
    
    Barbara

    
    Hugs, symapthy and prayers...
    
    	marianne

Wendy and Marc,

I'm really sorry to hear that.  

Dick

    I'm so sorry too.  We'll look for the new star in the sky  :-(
    
    Leslie

    Wendy,
    
    I am so sorry.
    
    Cheryl

    So sad, please remember that there is NOTHING you did to cause this.
    
    Linda 

    Wendy and Marc my thoughts and prayers are with you.
    
    God Bless
    
    

    Wendy and Marc,
    
    I'm so sorry to hear the news.  
    
    

    Wendy,
    
    Hugs, support, and sympathy!!!!!
    
    I am sorry to hear all your sad news.  I hope the boys are still 
    recovering.  Like everyone has said, God works in mysterious ways.
    I hope you and your family can soon be fully recovered.  You have
    hung on with all your tragedies, continue to be strong!!  You are
    a fighter as well as your three guys!!  You will be in my prayers!
    
    With love and thoughts from my family to yours!!!!
    
    Denise

Wendy and Marc, I am *so* sorry.

    Carol  :-(

Wendy and Marc, I'm so sorry to hear of your loss.

Chele

    
    Hugs to all your family. Mother nature is not always good to humans.
    
                    Celia
    

    I am so sad for you, Wendy and Marc, and Griffin and Spencer.
    
    Adrienne
    

    Hugs, love, prayers and profound sympathy for your loss.  Wishing you
    all a steady recovery from all the struggles you have had to face.
    Your strength thus far has been monumental.  May it carry you through
    this additional test.
    
    Sharon

    Wendy,
    
    May your heart feel the healing power of all those who love and care
    about you.
    
    May your soul feel the comfort of knowing your baby is embraced in
    God's love.
    
    From our family to yours.....
    
      Lots of Love & Hugs & Prayers
    
    .... Glenn, Lori, and Chelsea Rose
                                      

    I'm so sorry Wendy.
    
    Sending healing thoughts and prayers to you and your family,
    
    Noranne
    

    
    I don't know if this belongs here or not but as writing has always been
    my best means of expression, I'll put this here.
    
    	First, I had no idea of the pain involved in losing a baby. you
    would think that because you "don't know it yet" that it is an easy
    death. The truth of the matter is that you know the baby the minute it
    is conceived. It had a life, we had plans, there are Christmas gifts in
    my closet waiting for it. There is a great spot missing in my life. I
    keep patting my stomach expecting to feel the baby that was just there
    and I feel nothing, I am empty. I still think in terms of being
    pregnant, I find myself thinking that I shouldn't do that or this
    because of the baby, and then I realize that there is no baby.

    	Our baby loses in every sense of the word, If it had been a few
    weeks later it would have been called a still birth, it would have had
    a birth certificate as well as a death certificate, but because it
    missed the date, it became tissue that was sent to a lab. No matter
    that we have an early ultrasound picture where we saw the baby sucking
    on its fingers, no matter that we heard the heartbeat, there is no
    public acknowlegment. Sorry pal, you lose.
    
    	You know, people keep telling me that this is a test of my faith
    and my strength. Well I've had it, I've been tested for so long and
    kept trying to think that it was all for a reason and I now know that
    it is all just a wicked joke. There is no rhyme or reason,  there is no
    gentle and loving spirit, it was all just a story that we were to
    belive as kids and blindly keep believing as adults.
    
    	Nothing that is kind or loving could even consider causing one
    family so much chaos and so much pain for so very long.
    
    			Wendy                 

    Wendy,
    
    I know what you mean about well-meaning people saying things
    that are supposed to be comforting, but aren't.  My cousin who 
    lost her husband this past December while she was 6 months pregnant
    with her 5th child (2 are from a previous marriage) was told "God 
    doesn't give you more than you can handle."
    
    This is not true.  Either that or God greatly overestimates what
    we can handle.
    
    Unfortuneately, bad things happen to good people, and without
    reason.
    
    I can only offer my sincerest sympathy and healing prayers to
    you and your family.  And re-inforce that your baby was a real
    person and your loss is very real and I (and many other woman-noters)
    grieve along with you.
    
    Noranne
    

Wendy,

Your greatest attribute in this notesfile is your honest self disclosure, 
tactfully stated, but not held back or disguised.

I've gained from it, and I hope you have to.

Clay

Wendy, although I have not yet lost a baby, I have come very close more than
once now.  Please know that I hear your pain, and that there are many here
who *have* lost children who can fully empathize.

Wendy, don't give up on the idea of a loving spirit.  We are taught many
things about God which simply aren't true.  Human beings keep trying to 
understand God by making God in *our* own image (rather than the other way
around).  Perhaps there really is a God who loves us, but who honestly doesn't
get involved in our day to day lives.  If God ruled everything in this world,
then state lotteries would always be won by near-perfect people who used the
the money to help orphans and abused animals.  :-)  Whatever God is or does,
whether we understand it or not, God can be there to help us *through* bad
times, even if God doesn't protect us from them.  You can use God for the
additional strength that you, like many of us, cannot have right now and
desparately need.

God loves you, Wendy, and God loves your little baby.  I am *so* sorry that
the baby died, Wendy.  I am *so* sorry that the doctors then took the baby
from you.  That was a double loss.  Wendy, you need something of permanence
to mark the existance of your baby and your loss.  Why don't you have a small
service, and perhaps a headstone made up?  You can see if you can recover the
body, but even if you can't, it will be a memorial that perhaps you, Marc,
Spencer, and Griffin *need*.

Many, many hugs.  I wish I could offer more.

      Carol

    Wendy,
    
    I am so sorry for what you and Marc have gone through and continue to
    go through.  If you are looking for some hope, then maybe God worked in
    a way to prevent you from having to make a terribly difficult decision.
    Excuse me if that sounds callous, but as difficult as this all is, this
    is really what was meant to be.
    
    You do sound as though you're taking on too much.  Please get some
    relief for yourself.  Find people you can surround yourself with who
    understand your pain and anger at the situation.  It IS unfair, it is
    terribly awful - and it's NOT your fault!!
    
    I hope that you and your family are taking the time for yourselves and
    will speak to someone who can help you get through these difficult
    times.  Life happens in "years", not in days.  There are good years and
    bad years.  This is one of your "bad" years, but I'm sure if you think
    back, you've had many wonderful and prosperous good years with a good
    job and loving family.  Don't take these bad times out on anyone, and
    least of all yourself.  You will get through, and be that much stronger
    for it in the end.  And don't let "the world" ignore your baby.  Take
    your ultrasound picture, frame it, make note of dates, and try to make
    your families understand that this was your baby, and you tend to
    remember and cherish him/her forever.
    
    Please take care of yourself.  I wish you all peace and comfort in these
    terribly trying times.
    
    Patty

    Wendy - I don't know what to say - my heart aches for you and your
    family - I'm keeping you in my thoughts and prayers - I am *so*
    sorry.   Lila
    
    

Wendy -
Sorry to hear of your loss...Iris

    Wendy,
    
    I'm so sorry to hear about your baby.  
    
    I hope that you can feel the love and caring from everyone around you. 
    Even when they say something that is not helpful to you, I hope that
    their good intentions can come drifting through the words to give you
    comfort.  
    
    Jane

    
    
    
    I keep going over the pregnancy to figure out what I did different.
    What I ate that might have been wrong, what I did, whether some
    antibiotics that I took might have harmed the baby. How I could have
    been so very stupid.

    People tell me not to blame myself and then they say that it was
    probably best as the baby would have been sick. In essence they are
    blaming the baby, it is far easier for me to blame myself then it is
    for me to blame the innocent.

    In a few weeks, we will know the sex of the baby and whether it had any
    genetic defects, they don't really expect to be able to tell us much
    more than that, we will probably never know what happened. They told me
    that they couldn't tell the sex of the baby because it was too badly
    decomposed. They told me that it was a miracle that I didn't get a
    massive infection from the baby. Some miracle.

    People tell me to be grateful that I have two wonderful little boys and
    I am grateful, but having those two boys does not lessen the pain of
    this little baby. I am grateful for my boys, I love them with all my
    heart, just as I loved this little life as well.

    I have lost so much lately, the idea that I would die before my
    children, my faith in a loving spirit, my faith in the Doctors, my
    faith in the midwives (who essentially were useless), the list just
    goes on...

    People keep telling me to get counseling, my mother (who is trying very
    hard but is just not doing a good job of comforting) tells me I should
    call the Doctor and get pills because it's probably that
    "post-partum-sdaness-thing".

    Grief is not a disease. Grief is an outlet and I think I've got miles
    to go before I can even think about moving to any kind of resolution.

    I've heard from so many people who have shared their stories with me
    and I appreciate those gifts. Right now I am riding on your tail
    feathers hoping that I too will have the objective perspective that you
    all seem to have.

    Finally, I can't help but think I have done a horrific job at trying to
    protect my children from harm. A parent's job is to see that their
    child is safe and that no obvious danger touches them. With all three
    of my kids I have failed.

	What kind of a mother am I really?
                         
                                                                         

>        What kind of a mother am I really?

One of the best I know.

Clay

ditto.

    
    Wendy,
    
    Again, I suggest you try to get some help.  "Grief" is a part of a
    healing process.  But taking on responsibility for every thing that has
    gone wrong in your life, and blaming yourself and feeling so hopeless
    are some of the key signs of depression.  It would not be unusual at
    all for all that has happened to you and your family lately, to cause a
    temporary bout with depression.  And that IS a "disease".  I don't
    think that your mom is far off - but not post-partum depression as much
    as, you've simply been through hell and back again lately.  Being
    depressed is nothing to be ashamed of - it's simply that life dealt a
    little more than your normal coping mechanisms can deal with, and it al
    seems a bit much to get out of.  I'm sure that every single noter here
    has been through some form of depression in their lives.  Don't be
    embarassed to ask for help - it can't HURT.
    
    You are a wonderful mother, and you have 2 beautiful, happy children. 
    Your third child was not so fortunate as your first two, but it's
    certainly NOT your fault!  Do you blame yourself when one of your boys
    gets a cold?  Granted this was more serious, but there's nothing
    different that you could have done.  I don't think that anyone means to
    blame your baby either - I think that people are only trying to point
    out some of the less negative aspects of the situation in hopes that it
    will give you something to hold on to and use to get through all of
    this.  Being sick is not someone's fault - it just happens.  If you saw
    a mongoloid child would you think "MY GOD!  What terrible parents!" ??
    Certainly not!  You may feel pity, or appreciation for the difficulty
    of their lives, but I'm sure you wouldn't blame anyone.
    
    Times like this make it harder to believe in a "divine spirit", as it
    seems that nothing "good" could come of this, or be the cause of this. 
    Someone once said to me, that the dying are the people who are finally
    good enough to grace God with their company.  I know it seems unfair to
    you, but perhaps you can take pride that your baby was already perfect
    and special enough, in the eyes of God, to deserve a seat beside him in
    heaven.
    
    Please, do yourself a favor, allow yourself some forgiveness and love,
    and try to believe in yourself again.  You ARE a good person, and this
    isn't your fault.
    
    
    

    Wendy - you are a wonderful mother, parent, and wife!  Sometimes it's
    so hard - I don't know how many times I've thought that I haven't been
    a good enough mother, but I'm doing the best I can.  When Derek was 6
    months old he came down with HIB meningitis, a double ear infection and
    thrush all at the same time.  I felt like an awful mother because even
    though I had taken Derek to the doctor and the meningitis wasn't
    detected right away, there must have been something I didn't catch soon
    enough because he was so sick.  Thank God I brought him back to the
    doctor a couple days later, and the symptoms were blaring, and we got
    him admitted to the hospital immediately.  He was there 2 weeks, and by
    some miracle came through with no problems (meningitis can cause
    blindness, deafness, and a host of other things).  I felt so awful -
    what had I exposed him to, etc.  Then I realized that I can't put a
    forcefield around him to protect him all the time, I just have to do
    the best that I can.
    
    I think you are quite a remarkable person, and have been through a h*ll
    of a lot more than most people.  But you did get through it, and the
    road ahead will be better!
    
    My thoughts, prayers, and hugs go out to you and your family!
    
    Barb
    

Wendy,

You are an excellent mother.  You have done everything and more than most
parents and parents to be.  Alas, it does happen that people, born and
unborn, die for reasons we have absolutely no control over ... and this
was one of those cases.  You didn't go out and deliberately catch a dose
of Fifths disease ... a possible cause of this tradgedy.  You did not kill
your baby and you did everything in your power to ensure that you this
would be a healthy baby.

You say that maybe taking antibiotics was a stupid thing to do ... Come on
If you hadn't taken antibiotics, how far would the infection have spread and
would that have killed both you and the baby ??  You did what you had to do
and that's not being stupid.

I will not tell you that you should be thankful for what you have, nor will
I tell you that it was "for the best" ... that doesn't relieve your loss ...
and I must admit, when anyone has told me that, I have always felt worse for
it, wondering why I cannot have that kind of attitude ... that there must
be something more wrong with me for not being able to think that way.  Now
I realize that these words come from people who are simply not having to
live your feelings, and they really want to say something of comfort but
don't realize how hurtful these words are.

In telling you not to balme yourself for this tradgedy, they are not blaming
the baby ... there is far more going on in the creation of life than simply
you and your actions and the actions of the baby.  There are bacteria and
viruses ... living organisms ... which have far more power by their own
existence, over our own life and death than we as people have.  So, in
telling you not to blame yourself, they are simply that.  They are saying that
whatever happened was beyond your control, or the control of the life of
the baby.

In suggesting that counselling might help, people are NOT saying that you
are sick ... or that there is anything WRONG with you ... they are trying
to say that the amount of stress and tradgedy you have had to face is more
than most people and that a counsellor can help you grieve and deal with
that grief.  Not that grieving is wrong ... people, your mother included,
hate to see you in this mental pain.  Medication to help is not as ridiculous
as it might sound, if you aren't sleeping or the like.  As you well know
you can deal with both physical and mental pain far better when you are
not sleep deprived.

No Wendy, you are not a bad mother ... there are a lot of people out here
who care about you, and wouldn't if they thought you a bad mother.

Blaming yourself has no purpose ... think about it ... what do you achieve
by blaming yourself ?  Nothing but more pain.

Please ... take care of yourself ... and be kinder to yourself.

Stuart

    Wendy, I have no words right now to express my empathy for your grief. 
    Although I haven't lost a child, I have lost a cherished loved one and
    have experienced the remorse and anger you're grappling with.  I know
    how corrosive and tenacious remorse is.  I know the virulence of anger
    and sorrow that isn't released or exorcised.  I've witnessed your fear
    and pain over these many months, knowing that whatever help or comfort
    I've offered couldn't make it go away, but wishing it could. 
    
    You know that I think you're a *superlative* parent.  I'm praying
    you'll get through this in whatever way feels right for you. 
    Expressing yourself in here seems to be an important part of the
    healing, and I thank you for sharing such an intimate process with us. 
    I'm sending you lots of love.   Lynn
    

    Wendy, I know you don't want to hear this BUT I need to share this with
    you as I have suffered through the loss of a child.
    
    My child died during birth!!  She was my first and only child I ever
    born.  The dr. was neglent (we found out 3 yr. later) - he was an
    associate of my regular dr.  Needless to say I switched dr.'s.  We
    never sued because it was 1971 and it wasn't a "sue society" then.  But
    the real reason was because I knew no amt. of money would bring her
    back and no amt. of money was worth increasing our pain.
    
    Any way -- acceptance is the first step.  If you can rekindle the faith
    and let God be your comfortor you'll get through this.  I accepted that
    God had a plan for us.  I've always been taught that God gives us know 
    more than we can handle so I felt that if he didn't take her then, our
    pain would have been more than we could have handled at a later date.
    I actually thanked God for taking her when he did, because I know I 
    wouldn't have handled a SIDS death or any other kind for that matter at
    a later date.
    
    I kept wondering why us for years.  But, I did know he had a plan for
    us.  We now have two beautiful children whom we adopted.  We realize
    that if our child had lived, we would not have had these children
    because we wouldn't have put in for adoption!  These children couldn't
    mean any more to us if we had born them.  I know these are the angels
    that God sent us in return for Cheryl.
    
    We go to the Fatima Shrine every December 22 to celebrate her birthday.
    We only started doing that 10 years ago and it sure fills a void for
    us.
    
    Work through your grief for you are not responsible for feeling your
    feelings but you are responsible for how long you stay in your
    feelings.
    
    Look back over the past six months and thank God for the way things
    have worked out.  He has certainly answered your prayers for your other
    two children and there will be more prayers answered.
    
    You are a wonderful person and a wonderful mother.  Please listen to
    people when they tell you to go for counseling.  It wasn't available to
    us 22 years ago but it's available now.
    
    I pray I've helped you and not made you more angry. 
    
    HUGS and Understanding are coming your way.....
    Mary 

Add me to your list of admirers, Wendy.  

I think you are a *very* good mother.

     Carol

    Wendy,
    
    Do be kind to yourself.  I've learned so much from your notes.  You
    might want to look at some of them again to remind yourself,
    particularly #373.15 (which I came across recently, looking for
    something else.)
    
    Hurting for you too,
    Tara

    
    Wendy,
    
    I've wanted so badly to write you some words of encouragement.  I
    hesitated, not wanting to cause you further pain.  I myself have 
    not lost a baby in miscarriage, but I have several close friends 
    who have.
    
    I think maybe it would help if you named the baby, and could outwardly
    acknowledge your loss.  Perhaps you could hold a memorial service or
    whatever feels right to you and your family.  I realize that you do not
    yet know the sex of your little one so naming him or her may be
    difficult.  I've always liked the name Jaime for either a boy or girl, 
    and it means 'I love' in French.  I know from your notes that you truly 
    loved this little one as you do your born children.
               
    Please forgive me if I have been presumptuous.  You sound like a
    wonderful, caring person from all that you have contributed to this 
    conference.
    
    You and your family are in my thoughts and prayers,
    
    Paula Vaske
                                                                                                                                                          
             

    Wendy,

    Listen not to the words of those around you, but to their hearts. Words
    cannot hope to convey the feelings of love and sorrow people want to
    share with you, but they are the only way many of us have. So sometimes
    we try to use them and fail in their inadequacy.

    What you have experienced is the greatest pain a parent can have. The
    good things you have around you can not replace your loss. Your grief
    stands alone as a terrible event in your life, and you do not need to
    look for a net positive or negative outcome. There is no need to weigh
    them, to balance them against each other. No one wants you to deny your
    grief. What we all hope and pray for is that you will not allow your
    grief to destroy what happiness you do have. And we all cry for your
    pain.

    There is no reason to blame yourself. At all times you have done what
    you felt was proper for a responsible, informed parent to do. You have
    sought advice from everyone whom you thought worthy, you have done
    nothing rash or foolish. And yet this has happened. Much as we wish
    otherwise, a great deal of life is completely out of our control. Is
    there anything controlling it? I don't know. I am not a religious
    person. Whether life is guided by the hand of God, or cast by fate, or
    merely random, there is much in it that we are powerless to influence.

    Our responsibility as parents is to choose the best of the paths we find
    ahead of us, and realize that new challenges lie hidden down each of
    them. We cannot plan life, we must respond to it. We can fight and push
    and pull and drag things in the direction we want, and that noble effort
    is all any of us can expect from ourselves. We adapt as we must. You
    have always done these things, and that is what makes you a wonderful
    person and a wonderful parent. Hold onto that spark and rebuild
    yourself. This event was not a judgment of you, and you should not judge
    yourself by it. Keep a place in your heart for your lost child, a jewel
    in the spirit, and find your way back to a good path.

Steve,

You have expressed very well what many of us feel ...  and struggled to say
in a way that shows our caring both for the situation and for Wendy.

Thank you.

Stuart

    Wendy ...
    
    I cannot offer any words of comfort about loosing a child, as I don't
    yet have any children.  However, I can understand some of the grief you
    are going through.  After loosing my fiance and my brother tragically
    within only one year, I know grief.  My heart goes out to you, as it
    did for MY mother when she lost her only son.
    
    May I suggest that you go into this wonderful file called GRIEF.  Send
    mail to ELESYS::ELLIOTT for membership.
    
    HOlly
    

    Has anyone heard from Wendy ?
    
    Stuart

    
    I'm still here just been busy, this weekend we thought Spencer had an
    infection and had to run the firedrill of getting urine to the lab, and
    waiting for the results, not knowing if he would be hospitalized or
    not. Not knowing if it was his kidneys again or not. Thankfully he did
    not have an infection but it reminded us of how precarious his
    situation is.

    And Griffin has some sort of summer virus (Ecco?) he had too high of a
    temp yesterday to give him his 15 month shots. If he's not better by
    Wednesday he needs to be "worked up".(no one is taking any chances with
    our kids)

    I saw my Doctor today and she has pulled me out of work for awhile.
    Definitely am a candidate for some time off.

    I'll be in touch here or through Marc, thank you all for your caring,

    				Wendy
                 

        hug                        hug     hug                        hug
         hug                    hug           hug                    hug
           hug              hug         *         hug              hug
              hug      hug            *   *            hug      hug
                  hug                * HUG *                hug
             hug       hug            *   *            hug       hug
        hug                 hug         *         hug                 hug
    hug                         hug           hug                         hug
 hug                               hug     hug                               hug
hug                                  hug hug                                  hu
ug                                     hug                                     h
                                     hug hug
                                   hug     hug 
                                  hug       hug
            hug                  hug         hug                  hug
       hug       hug            hug    HUG    hug            hug       hug
   hug               hug       hug             hug       hug               hug
 hug                    hug     hug           hug     hug                    hug
hug                       hug    hug         hug    hug                       hu
ug                          hug   hug  hug  hug   hug                          h
                             hug     hug hug     hug
                              hug   hug   hug   hug
                                 hug         hug

    There's a situation here in England at the moment, a 4 *hour* old baby
    girl called Abigail was snatched from a Nottingham hospital by a woman
    impersonating a nurse. The nurse's uniform was found stuffed behind a
    toilet later, but there's still no major breakthrough as to where the
    baby has gone.
    
    I have no personal connection with baby Abi or her family, but I can
    certainly feel for them. What the parents must be going through...
    
    If anyone else can spare a thought for them in prayer, I'm sure it 
    would help a little.
    
    Andy

    
    
    How horrible!  I couldn't imagine how those poor parents are feeling
    right now.  I hope that somehow, someway, the parents get their
    little baby back.
    
    Sigh...there are some really sick, demented people in this world...:(

    Looks like a happy ending to the story!  (Thank Goodness!!) I read
    this in today's paper:
    
    A newborn baby snatched from a hospital near London by a woman posing
    as a nurse was returned to her parents Saturday, ending a 15-day
    ordeal.
    
    Police, acting on a telephone tip, found Abbie Humphries asleep in a
    tidy red-brick house less than a mile from the hospital where she
    was born.
    
    A 22-year-old woman was arrested and later charged with abducting Abbie. 
    She was not identified.
    
    Abbie's fate has captivated Britain since the woman took her from her
    father, Roger Humphries, July 1 in the pediatric ward of Queen's
    Medical Center in Nottingham.  The woman said the 4-hour-old baby
    needed a hearing test.
    
    Surveillance cameras captured the woman in a hospital corridor as she
    apparently carried away Abbie, and newspapers plastered police
    composites of the suspect on their front pages.

    I think the whole country breathed a sigh of relief :-) Thankyou to all
    who prayed.
    
    Andy

    

    After an extended time of healing on all fronts, I am back. People
    around me have been telling me all day that they can't believe how
    different I look. One woman said that the difference seemed to be like
    "life has returned to your face". In part, I credit time alone (at
    home), reading, talking, crying, strengthening our home (cleaning,
    cooking, canning) and doing a fair amount of spiritual reflection. I
    was fortunate to be aided by, what I can only call, teachers in the
    path that I was and still am on. And although there will always be a
    tiny hole in my heart that will perpetually pain, the worst is over.

    We found out through the testing that we had had a daughter, Elizabeth.
    We never found out the exact reason for her death (they think it was
    Fifth's but there is no proof positive) but it doesn't really matter.
    Although she was a part of me, she was also an individual and it just
    wasn't her time to be with us.

    Elizabeth's golden baby head charm has joined the other two of my
    children's on a necklace that I never take off. It feels very right to
    have her there.

    Thank you all for your support and thoughts, this has been quite the
    lesson.

    				Wendy


    	

I need prayers/warm_thoughts/etc again, for Justin (who else?).

He is now 21 months old, and though he has gained weight extremely well,
he is not out of the woods like we had hoped.  He's had pneumonia again
once since I last wrote about him (2 months ago), and now he has some strange
illness they haven't figured out.  He is bleeding rectally.  He throws up 
often.  He tested negative for bacteria and virus.  

It started last Sunday, and we didn't know if it was illness or food allergy
(he had eaten at least one thing he shouldn't have at a party we had the
day before).  Monday he had his worst convulsion ever:  16 minutes, and in
the middle he stopped breathing.  Some of his formula had come up and was 
choking him.  Luckily, I was able to get him breathing again within a minute
or two.  

We spend the next 8 hours or so in an ambulance and at ER.  They thought about
doing a CTscan and Spinal Tap (lumbar puncture) but decided against it.
Our regular doctor was out of town until Tuesday, but she has seen him and
she was the one who ordered the tests which didn't come back with anything.
We're all stumped, and now the rectal bleeding (internal, not external) has
started again.  She'll be seeing him again tonight.  He's feeling really bad,
almost as bad as when he had pneumonia (but not quite).

We're scared he's going to die.  If not of this, this time, of the next illness
or the next after that, or after that.

We try to deal with this stress, we try to deal with the stress of moving 
(we leave her next week!  Sat, Aug 13), we try to deal with the fear, the
overwhelming fear.  I'm not ready to see him die yet.  He's so almost-healthy
and happy kid when he's not sick.  I keep thinking he'll get over this and
be like a healthy kid.  And then he gets sick again; bad sick.

How are we ever going to get daycare?  Who would take him?

Prayers for his health are sorely needed.  The poor little guy just feels
terrible.  :-(

Oh, and Digital *still* hasn't let me put him on my insurance!!!!!!!!!!!!!!!!!

     Carol

    
        Carol,
    
         this is terrible! The poor little guy. No wonder your so
    stressed out. I'll have him and your family in my thoughts and prayers.
    
       Hugs,
    
       Rose marchand

Carol,

My thoughts and prayers are with you.

Chele

    	Carol,
    
    	How are you traveling?  Will he be in the car during your move? 
    	Or will you be flying out?
    
    	There is at least one factor in your favor...  Aren't you moving 
    	to Massachusetts?  If so, you will at least have the resources of 
    	Children's Hospital at your disposal, once you get here.  They
    	have some wonderful doctors there...   
    
    	Good luck.  
    
    	Peggy

Your prayers seem to be helping.  Thank you, and please continue them.
Justin is doing better.  Most of the time now he is very happy, and though
he is still having some problems it has lessened considerably.  If we can
get him healthy and keep him that way until we can get settled in to our
new home in Massachusetts, that would be a good start.  

Of course, our goal is to have him completely healthy, except for "normal
kid illnesses".  Your prayers and thoughts toward that are *greatly* 
appreciated.  I'm not kidding.

We leave Saturday, by car.  The backup plan is for one of us to fly out
with Justin while the other two drive, but we really don't want to do that.
We expect to be on the road 5 days, and close on our new house on Friday the
19th.  Then I get to figure out what insurance to select, etc.  :-}

The other piece of good news is that Digital has finally decided to allow
me to put *both* of my children on my insurance.  It's been a long, hard
time.

Thank you, so much.  Your prayers are a great help to us.

    Carol

    
    Latest news on Spencer:
    
    	Four and one half months after Spencer got his kidney infection,
    his most recent urine sample showed no blood at all in his urine. This
    is good, this is very good.
    
    He now only has to be tested every 2-3 months. The big test, however, 
    will be to see if his kidney functions keep up with his growth but for
    now things look as if they have healed. (BIGGGGGGG sigh of relief on
    this end).
    
    				Wendy

    Wendy,
    
    This is wonderful news!

	Yes Wendy, Wonderful news!

	Karen

    Wendy
    
    YES!
    
    meg

    I'm entering this note for a friend of mine, Donna Fultz, who is a
    relatively new member to this conference.  I got a call from her
    husband last night to let me know that Donna, who was 26 weeks
    pregnant, had gone into acute liver failure and they were forced to
    take the baby by section.  Donna seems to be recovering and hopefully
    there won't be any permanent liver damage.  
    
    Their little girl, Nina, weighs in at 1.5 pounds and was born at 8:30
    on Saturday.  Her first 24 hours were pretty good, I guess they had
    her on 20% oxygen which is pretty good.  Last night Nina developed a
    heart murmur which forced some blood into her lungs, so the progress
    of the first 24 hours was lost.
    
    I'm going in to see Donna and Nina today, and I thought that it would
    be really nice if any of you out there that have gone through the
    touch and go of a really premature baby could send me mail to bring
    in to her.  And of course, prayers for Nina and her family.
    
    Thank you all, 
    
    Sue
    
    
    

    Sue,
    
    Do you know what hospital they're in, to send a card?  Will Donna still
    be there for a while?  I know how MUCH she was looking forward to this
    little baby .... I wish them all the luck in the world and will keep
    them in my thoughts and prayers.
    
    If there's anything that she needs, please let us know!
    
    Patty

    
    Hi Patty,
    
    She's in Brigham and Women's room 838.  I think she's coming home on
    Wednesday if she keeps improving.  
    
    Thanks,
    
    Sue
    

	Praying earnestly for Donna, Nina, and Daddy...

	Karen

    Donna, Nina and Ed are certainly in my prayers as well.  I have known
    Donna for a long time and she and Ed were so looking forward to this
    baby.  Time goes by so quickly...our babies are now 18 and 21...but
    they are always our "kids".
    
    Lin
      

My prayers and best wishes, too.

     Carol

    Just a quick update on Nina, she is doing well.  They started giving
    the medication to close the hole in the heart that caused the blood to
    be forced into her lungs.  She is back down to 20% oxygen (down from
    70% sound right?).  Donna sounds optimistic.
    
    Thanks for all the wonderful, caring replies and sharing of
    experiences.

        Count me in on the thoughts and well wishes.  Being a mom of 2 premie
        girls (one who was born at 26 weeks) I feel rather close to this note.
    
        Is there a "hole" in the heart, or is it an open pda?  Failure of
        the pda to close is not uncommon of a child born at that gestation. 
    
        To Donna and her family, may you find the strength to get through
        this.
    
        warmly,
    
        Beth
    

    Sarah,
    
    Please tell Donna and her husband that we are thinking
    of them and praying that little Nina will grow stronger
    with each passing day.
    
    		Linda

    Is there any update??
    
    Patty

    Sue,
    
    Thought that you would see this quicker than if I sent you another
    mail ;-)
    
    Your original note has with your permission now been posted in the
    Prayer topic in Christian conference, along with the update contained
    in your mail.
    
    Glad to be of service.
    
    
    Paul

    Sue,
    
    Is there any update on Donna, Nina, and Ed that you can share with us?
    
    Thanks,
    Diane

    
    Hi all,
    
    I really don't have any 'new' information, but I can reassure everyone
    that I spoke with Donna this morning and all was well.
    
    I get the impression that the doctors tend not to discuss too much
    with them.  I saw some pictures of Nina, you can't imagine how tiny
    she is.  It is truly amazing.
    
    Keep the positive thoughts and prayers going, they seem to be working!
    
    Sue
    

    
    I just caught up on these recent notes and in January I delievered my
    son at 28 weeks.  Labor was held at bay for a week, so we got to be
    prepared for what to expect.  The told me to expect a 1.5-2 lb baby, I
    luckily had a 3lb 2 oz son Kevin.  This not brings that all rushing
    back, but the 20% oxygen sound great.  Kevin had many more respiratory
    problems and went for ventilator to an ossilator to Cpap to nasal
    canilar (sp) and was in the hospital for 2 1/2 months.  Please share
    with Donna and her family that my prayers are with her, but in this
    case day by day and week by week, the baby will just get better and
    better and although she'll need some help in "catching up" and some
    special care, I'm sure she's headed for the right track and before long
    she'll have a very average (but small) 8 month old just like I do.
    
    My only other comments, I really want to share is to tell them to speak
    up to the doctors and nurses and ask questions ALL THE TIME!!!  They
    are the baby's only true advocate.  Demand explanations if some new
    medication or xray is taken.  Make the hospital give you a progress
    update at least once a week, even if it's only 15 minutes.  I found
    that the doctors forgot that we were Kevin's parents just because we
    had not taken him home yet!  They were pleasantly surprised with our
    involvement, as there were many sad stories of uninvolved parents in
    many many cases.  (I was later told that a lot of premature births can
    be traced back to low or no pre-natal care, so obviously if there was
    no participation in the pre-birth time, don't expect a lot after the
    fact.)
    
    If they need more info I'd be happy to call Donna and share my
    experiences, just let me know.
    
    Oh the other thing, tell them to sign up for SSI, Social Security,
    right away.  A child with a low birth rate will quailify immediately
    and will receive monthly benefits due to the fact that the baby "lives"
    away from the parents (in the hospital).  Some of the benifits include
    a monthly check, and Medicare/cade benefits that may be useful if their
    insurance doesn't cover certain hospital and post-hospital services.
    
    Hope this helps!!
    
    Beth
    

    Before you get your hopes up on the Medicaid and SSI benefits, it all
    depends on the parents financial status.  In our case, we would have
    had to apply to get rejected so that we could apply for other programs
    [Caileigh Mulligan].  Not everyone will qualify for SSI.
    
    On the other hand, when she does come home, her medical insurance and
    then the state will cover Early Intervention services [EIP] which will
    provide things like occupational therapy, physical therapy, speech
    therapy....whatever is needed whether it is regular appointments like
    Brad had or just 3-month monitoring visits like Jessica had.
    
    And I heartily agree with the previous reply.  Donna and Ed are the
    Nina's parents, and the doctors do forget that once in a while.  Ask
    and keep asking questions.  It can only help.  I remember one
    particular episode with Brad where they couldn't figure out why he was
    dumping all his formula [he'd eat and it would go directly into his bag
    as he had his ostomy at 12 days].  They tested everything and just
    couldn't figure it out for about a week.  We kept asking questions and
    asking the same questions, and one day I made a comment that it was
    just like the food went straight through his system and didn't bother
    to stop in his stomach. Well, that comment triggered a few thoughts in
    the doctor who ordered an X-ray. Turned out that what I had innocently
    said was actually the case -- he had pushed his feeding tube all the
    way through his stomach and to the beginning of the intestines so it
    was never stopping in his stomach to be digested.
    
    I know the medical staff at Brigham's NICU as that is where my twins
    were. They are top-notch and welcome parental involvement, questions,
    and interaction with open arms.
    
    I'll also volunteer to call Donna, but she may prefer to call people
    when she is ready.  The one thing I learned with Brad in the hospital
    for 6 1/2 months was to hate the phone ringing. It generally meant bad
    news.
    
    Cathy

    
    Hi again,
    
    I just spoke with Donna and Ed, Nina is scheduled for surgery this
    afternoon to insert a feeding tube down through a vessel in her neck
    and past (through?) her heart.  I guess this is pretty routine in pre-
    mature babies and should only take about 15 minutes.  The scariest
    part to them right now is that Nina will have to undergo anesthesia
    (sp).  
    
    Sometimes we also talk about other babies in the room, Nina was the
    smallest (and youngest).  This Saturday she relinquished that dubious
    distinction to James, 1 lb, 25 weeks...
    
    So, keep Nina in your thoughts today, especially around 3:00.
    
    And thanks all, for your notes.  Donna appreciated them all very much.
    
    Sue
    
    P.S. They seem to have the SSI stuff under control, thanks for that
         important information.
    
    

Thanks for the update.  I've been thinking about them too...

- Deb B.

    Brad had that central line also, and he kept it for about 10 weeks.  It
    had to be removed before they could transfer him out to another
    hospital.  The risks on the surgery are as you noted -- the general
    anesthesia for a child of that size is a problem.  In addition, the
    risk of infection setting in around the central line are there, and for
    that reason, they will be particularly careful to keep it clean and
    sterile.
    
    Brad has a small scar in his neck which is actually hidden in the folds
    of his neck and another small scar on his chest from where the central
    line went.  Generally, they'll use the central line to feed Nina til
    she starts to take regular feedings of formula/breast milk, although
    they'll leave the central line in for some time after that just in case
    they need it again. They don't want to have to remove it only to put it
    back in.  And when they do start feeding her [generally they start at
    around 1/4 ounce per feeding], it will be through a tube into her
    stomach.  Babies don't know how to suck/swallow til something like 34
    weeks [I don't remember the exact point anymore], so it will be some
    time before she graduates from central line to tube feedings to
    bottle/breast feedings.
    
    Oh, and if Donna cannot successfully breastfeed Nina, assuming that's
    what she's decided to do, tell her it hasn't got anything to do with
    her. I thought I was a complete failure, plus I didn't want to
    breastfeed anyhow which translated to spending all my time hooked up to
    a milking machine while my husband got to visit with the kids.  After I
    finally gave it up, it came out that successfully nursing a premature
    baby is challenging to say the least for a whole lot of reasons. But
    knowing that made it easier for me.
    
    Please keep us posted. Some of us who have been through it can give you
    our impressions of particular processes as Donna and Ed encounter them.
    
    Cathy

    Sue,
    
    Thanks for your update; I, too have been/will be thinking of the Fultzs 
    and hoping all goes well.
    
    /dlw

    Sue,
    
    Thanks for keeping us up to date...I've been thinking about them too. 
    The line they are putting in will be very helpful, it will keep Nina
    from the constant prodding to look for the next iv site, Gosh, I hated
    that.  Shannon had a central line for 10 days, then it had to be
    removed.  Courtney did not, in fact Courtney started po feedings by
    week 2.
    
    (Cathy, it is 32 weeks for the sucking reflex, I was able to
    successfully nurse Courtney at that time, Shannon however got breast
    milk til I gave up the pump at ~~12 weeks)  My advice to Donna if she
    wants to nurse, don't stop pumping every 3 hours...It can succeed, and
    you'll be glad you did.  suffered such guilt after I quit)

    Thanks, Beth. I couldn't remember the exact time, but you've had more
    recent experience than I did.  One thing I do remember, though, is that
    Jessica couldn't put the suck, swallow, breathe thing all together and
    generally had to be reminded about that breathing part. Brad, on the
    other hand, didn't need so much as a tickle to get the whole thing
    together on anything relating to eating, and he hasn't stopped yet. 
    But then, food is one of his favorite things ;)
    
    One other thing for Donna. I was amazed at the weight that Brad was
    able to gain while on the central line. I guess it never occurred to me
    that you could gain weight on an intravenous feeding.  As I recall, he
    packed on those grams quite nicely with the central line.
    
    I imagine they're doing it about now. My thoughts and prayers are with
    them.
    
    

    
    Spoke with Donna this morning, Nina came through the surgery fine.
    I guess this weekend was another milestone, 2 weeks old!
    
    Nina is now in an isolet (she was in more like a plastic zip up bag).
    so Donna is happy with that progress. Donna mentioned today that
    Nina 'needed to be reminded of that breathing part' sometimes too!
    
    'nother hurdle successfully passed!
    

    
    
    Well I got my account to finally work today.. and I want to thank all
    of you for your prayers and good thoughts.. 
    
    Everyday is struggle but, we seem to find stregth gh t we need to proceed.
    
    I will be returning to work on November 20 or the next day 
    
    Nina is very small but, seems to have everyone in the nicu wanting to
    take care of her.  
    
    We / ED and I seem to ask a lot of questions and yesterday I got to
    kangagroo with her.. she seem to like it, she was breathing on 
    her own the whole time.. 
    
    They did extays of her head (2 times) and she had no blood on her
    brain.  Which we were totally excited about.. 
    
    She is up to 1cc of milk today.. 
    
    Please feel free to write my account on zeke::fultz, I cant log in all
    the time but, I am going to try to log in a couple of times a week.. 
    
    Sorry for the edits.. have some modem problems.. 
    
    donna
    
     4e she was on o
    youa

    Donna,
    
    Great news about the cranial ultrasounds!  IV hemorrages were the most
    frightening thing we had to deal with.  I was wondering about Nina's
    head, and was going to ask the question soon....
    
    The kangaroo hold will help her grow and feel secure, I am a believer
    that it benefits both mom and baby and should be part of daily care at
    least while in the busy hospital surroundings ENJOY!
    
    continued good wishes,
    
    Beth

Donna, I'm glad things are working out and hope they continue to do so.

    Carol

    Donna,
    
    You have certainly been in my mind and prayers.  I went away for 2
    weeks right after Nina was born and often wondered how she and you and
    Ed were doing.  I'm so glad to hear of Nina's progress.  Will be
    praying for all of you.
    
    Take care,
    
    Lin
    

    
    
    Update on Nina, ... 
    
    She is now 1 pd 12oz last night was 40 grams of gain.  
    
    She actually has cheeks.. She is up to 4.5 oz of food a day.
    
    We hold her every night.  She had reaction to some blood lasst 
    Friday but, the docotors couldn't tell us why just that she is 
    okay now.  
    
    She will be a month old on the 24... 4$ whole weeks.. a
	Mile stone for us.. 
    
    Keep praying for her everyday and every good thought is a gift to us.
    
    Thanks Donna

    Pretty respectable weight gain!  Sounds like she is doing very well,
    especially if you're able to hold her every day.  And now that she's
    got cheeks, she'll get a stomach soon and just keep on growing.
    
    Is she off the vent yet?  That's another major milestone.  And keep
    counting those weeks.  Every day is another day closer to home.
    
    Cathy

	Hooray, Nina!  

	Still remembering her and you in prayer, Donna.

	Karen

Glad to hear how she is improving, Donna!!

    Carol

    Good news, Donna! 
    
    Thanks for the update.
    
    Lin
    

   Great news, Donna - I'll keep Nina and you and Ed in my prayers for 
   continued good news !

   Debbi

    
    Another Update.. 
    
    Last week (wednesday) wasn't so good Nina had a bunch of spells 
    (which is when the machine needed to breath for her).  
    
    They uped her oxegen rate and started doing nebs treatment on her 
    which helps her with breathing.  
    
    They took a blood culture to find out if she had any infection and
    today
    we found out that she didn't have any infection so she
     is back on track and now weighs in at 830 grams they
    also removed her from antibiotic.   These are the most scariest times
    since you don't know what caused the the problem of the spells.. The
    nurses say that she needs to be putting on 30 to 40 grams a day before
    they can remove the ventolator.  
    
    Thats all for now we are off to hospital.. 
    
    Keep those prayer and good thoughts coming.. 
    
    Donnad

    The spells you're describing sound like apnea where she forgets she's
    supposed to breathe. If that's what it was, that's fairly typical for a
    child of her age. I remember both my kids getting aminophylline [sp?]
    for a while to help with that, and they both did eventually grow out of
    it.
    
    The nebulizer will also help to open up her lungs and help her to
    breathe. I imagine she's not too crazy about that mask on her face, but
    Brad would calm down and relax just after the treatment started and it
    occurred to him that this thing was making him feel better.  And the
    chances are pretty good that she'll continue on the nebulizer at home,
    though it will probably be from time to time as needed and not on a
    regular basis. For instance, Brad has a cold now, and he has developed
    a wheeze, so he's on the nebulizer this week. But it's been a solid
    year since he used it last, so it all depends.
    
    Keep your spirits up. It sounds like Nina is doing very well and is
    gaining weight steadily. That in itself will help her out.
    
    Cathy

I'm praying for you.

     Carol

    This week has been okay but, Nina has had trouble breathing she is up
    to 39 to 40% oxygen.  
    
    They think she has another infection which is causing he to go up on
    her oxygen.
    
    She is over 2pds today
    
    She is on an antibiotic to see if that clears up the problem 
	She also had a blood  transfusionn last night.. that usually makes
    her feel better.
    
    All we can do is wait.. She will be 5 weeks old today.. 
    
    The doctors are not sure what is causing the problem that in it's self
    make s it harder.. 
    
    Donna

    
        Poor baby. I'll have her in my prayers.
    
       Rosie

    Donna,

    Hang in there, I'm still keeping all of you in my prayers - each day that
    goes by is a plus !

    Give Nina a "hug" from me,
    Debbi

    Donna, my prayers have been with you and Nina since Day one.  Please
    keep the updates coming.  
    
    Good luck to you and NINA.
    
    Holly
    

    
    Update on Nina 11/8/94
    
    Nina is up to 2 pd 8 oz  she currently has an infection that is slowing
    her down.  The doctors don't seem overly worried.  
    Yesterday she was having problem with her bowl and they had to giver
    her some thing to make her go.  She is still on the antibiotics and
    will be for 10 more days she is now being weaned off the steriods that
    were stared 45 days ago.  She is 7 weeks old this saturday.  
    
    The docotrs said that we would need to have some flu shots and that
    Nina would probably come home with oxegen for the first couple of
    months.
    
    One problem that I think I might have over the holidays is the people
    that want to go into see her We are suppose to limit the amount of
    contact that she gets I have told people that I don't want to hurt
    there feelings but her care come first and I hope that they understood.
    
    We are still kangarooing every day and she seems to have the best vent
    settings during this time.  Yesterday I held her for 2/ 1/2 hours she
    was very comfortable.  
    
    We went into kenmore (boston) to find out what the chance of having
    help syndrom again and the chances are 4%  the chance of getting help
    is 1 in 1000.  
    
    We have a long road still ahead of us but, we depend on each other for
    strength.  Friends have been our greatest resource.
    
    thanks for all the well wishes.  
    
    Donna

    2 pounds 8 oz!  I'm impressed.   Sounds like she's really growing
    there!
    
    Brad came home the first time [he was only home for 2 weeks then went
    back in, but that's another story] on oxygen and an apnea monitor. 
    Don't let it bother you or slow you down. We certainly didn't. I
    remember bringing him to the mall with all that apparatus and getting
    the strangest looks, but the kid had been cooped up for 17 weeks, and
    he [and we] needed to get out.  They should give you one of those
    portable tanks, and they'll deliver regular replacements as needed, so
    it is not difficult to drag around anywhere.
    
    As far as people wanting to visit, try blaming it on the doctor and say
    that your doctor won't allow visits.  I understand the rules have
    changed at Brigham, but when we were there, only parents and
    grandparents were allowed, but we still told my husband's father that
    only parents were allowed so he wouldn't go in.  I would just tell
    people that it's not allowed or the doctor won't allow it because she
    might catch something.  So what if you hurt a few feelings -- you're
    talking about a 2 pound baby here who's still on steroids -- she's not
    likely to just catch a cold. It'll be more like a cold that goes into
    pneumonia.  They'll have to understand or they'll have to get over it.
    
    We found we didn't have a problem, and in fact when Brad came home both
    for his 2-week stay and then for good at 6 1/2 months, we tended to be
    very under-protective [is that a word?] and we let just about anyone
    and everyone hold him.  He turned out to be very resilient, and it gave
    us a break.  You need to do what you're comfortable with and what you
    feel is best for Nina.  That's your job, and if you step on a few toes
    in the process but she stays healthy, that's all that matters.
    
    Sounds like she's doing so well.  If they're already talking about
    oxygen at home, any chance you'll have a nice little present under your
    tree for Christmas?
    
    Cathy

    Donna,
    
    I'm so glad to hear of Nina's progress!!  I can't imagine all that
    you're going through, and the three of you are in my thoughts
    constantly.  She sounds like a fighter though, and overall your news
    has been good, and she's done well.  There's so many people rooting for
    you - I hope you know that!
    
    As for visits, I know that when Jason was born, and I just didn't want
    a lot of visitors, I told the nurses, and they must have written it
    down somewhere, because they wouldn't allow 'certain' people in with him.
    I was lucky because they actually asked me, but they certainly didn't
    mind taking "the blame" for the restricted visits.  "No, I'm sorry, the
    baby can not have visitors right now", but we'll wheel her over to the
    window, and you can see her.  And I don't know of anyone who'd argue
    with the Hosp. staff.  Maybe you can address your concern w/ the
    hospital and ask their advice - I'm sure they're used to dealing with
    this!  As for home - get an answering machine.  Don't answer the phone,
    tell people you turn it off when she's sleeping, so just leave a
    message, and then you can choose when/who to call back, and you have
    more control over inviting people.
    
    And if you don't answer the door, that's probably not bad either ....
    if people can't take your hints or statements, and are only interested
    in themselves seeing your daughter, then they clearly don't have Nina's
    best interests in mind.  Do what feels right to YOU - you're her #1
    fan, and are going to be "sticking up for her" the most, for the rest
    of your life .... don't let the relatives come between that. (I know -
    easier said than done!).
    
    OR, maybe if you can explain the risks to people - "Did you know that a
    baby this small is very susceptible to even a simple cold turning into
    pneumonia?  I didn't know that - I'm going to have to be REAL careful
    this winter!" - when they hear it, maybe they'll think twice?
    
    Good Luck!
    

Since things are going so well for Nina, I thought I'd drop a quick note
and thank you for helping with prayers and warm thoughts for Justin!

When we moved from Colorado to Massachusetts in August, Justin dropped the
good weight he had finally gained.  He lost 3-4 pounds.  However, he has now
gained that back with a vengeance!  For a year he was so skinny he was off
the charts!  As of last week, 24 months old, he weighs TWENTY SEVEN (27!)
POUNDS!!!!!!  He's in the 40th percentile!!!!!  He hasn't been that high on
the charts since he was *born* (at 50th %).  

What's more, his breath-holding spells and general health are much better.
Before the move he would have a breath-holding spell once a week
(when hurt, he would turn blue, eyes would roll back, and he would go limp
and be out of it for 15-30 seconds, and once right before we left it went
to 16 minutes and was a pretty classic convulsion).  He would also have 
several near misses each week (might turn blue, but would start breathing
again before he lost consciousness). Now in the lovely oxygen-rich state of
Massachusetts he has had only ONE breath-holding spell and only TWO near
misses in 12 weeks! 

Since May, before we left, he had 2 problems with his lungs (once post-surgery
and one a cold that went into his lungs) which caused him to be hospitalized
and at least one of them where he came pretty close to dying.  A few weeks
ago he had another cold go into his lungs, and this time when I took him to
the doctor they heard it right away, confirmed it was in his lungs, and
the antibiotics actually WORKED!!!!  There was a 50/50 chance, and it WORKED
this time!!!!  He got better right away!!!

I'm starting to love this state.  :-)  Thank you so much for all of your
prayers and good wishes!!!  It has been *so* scary, and though we are not
entirely out of the woods yet, things are so much BETTER!!!!  :-)  :-)  :-)

      Carol

    Carol,
    
    I am glad justin is doing so well.
    
    My continued good thoughts for you and your family.
    
    meg

    
    
    Carol, I am so glad things are going better for justin,.. and welcome
    to MA.. 
    
    If you need anything give us a call or write to me on mail I will be
    back to work.. 
    
    Another update on Nina.. 
    
    She is off the vent today and she wieghs in at 2 pd 12 oz.. 
    Thursday they are going to stop tthe antibotics instead of leaving her
    on for another 10 days.  Antibotics are good and bad they allow for
    other infections to take hold so they have to limit them.  
    
    It will be nice to see her face tonight.. they are doing c pap which
    blow air into her lungs but, the tube is only to the back of her throat
    and they remove the tube that went to her lungs.    If it works out
    tonight and the next couple of days they will just have her on the nose
    prongs.
    
    She puts on 20 to 40 grams a day so she is really starting to look like
    a baby.  She actually has some fat around her chin.. 
    
    Donna
    

    Donna,
    
    Great news!!!  The step from vent to Cpap is a major milestone!  
    
    continued good thoughts,
    
    Beth

From: [email protected]
Message-ID: <[email protected]>
To: [email protected]
Subject: Re: Time to update Parenting?

Hi, I've been meaning to update everyone here.

First, Spencer is doing well, his last check up indicated normal urine and he
gained back those few pounds that we were worried about. We did discover that
he has a medical condition where he secretes too much ear wax (essentially
his ears were blocked hence the lack of speech that I always mentioned about
him). We took him to a specialist and will be doing the antibiotic/maybe tube
thing in one ear and probably monthly appointments to get his ears cleaned
out. We've noticed a great difference in his speech since he hadthe wax taken
out and it looks like he will be getting Speech therapy for awhile to bring
him up to where he should be.

Spencer recently had his 3rd birthday, got a few Star Trek toys and has
become a real "treckie". He sleeps with those toys and when he comes home he
runs over to the "zoom" corner.

Griffin has really grown from a baby to a toddler. He understands and uses
the word "no" quite forcefully and quite well. He's become independent in that
he will play with Spencer or by himself for awhile. He has discovered "Too
Too Chains" and adores Thomas the Tank Engine.

With the heat being turned on, Griffin's skin has gotten very dry. Everynight
after he bath he gets a massage with various oil to "slicken him up". He
loves these massages and throws himself on the towel so that we can do him.
Too cute.

I'm doing well in my business. I've had straight work since I left Digital
(in fact, I usually work on 2 contracts at a time). I've met some wonderful
people and have been doing interesting jobs that I've both learned in and
enjoyed.

There are rare weeks when the jobs collide and I have two deadlines in one
week, but those don't happen often at all, in fact, the pace is very relaxed
and I haven't had this much fun at a job in my entire life.

I do miss the people in this notesfile and think about you often. Take care,
I'll be back via Marc in the future.

    Update on Nina,
    
    
    She is now on just oxegen tubes.. and they turned off herincubator
    yesterday so that she learns how to keep her own body warm.  
    
    She is now up to 1410 grams 3 pds 2 oz.  She is really looking like a
    real baby now .  we have started buying her nighties to wear.
    
    Today was her last day for antibotics'  lets see how she does with the
    infection .
    
    It seems like they are really pushing her now.  she might move to the
    step down room in the next couple of days.
    
    I return to work on Monday.. She should be home sometime in January,.
    
    Donna

    
    
    Nina is doing really well.. but now they want us to move her to another
    facility namely Nashua Memorial. 
    
    	I visited there today and though there facilty is nice it is very
    small and they only have two NIcu doctors to work on as many at 16
    babies.
    
    I really don't want Nina to move from Brigham and Womens I can't
    understand why they want to move her only to have me and my husband
    completly upset for only 4 weeks.
    
    She would be the smallest baby in the NICU as of this moment if 
    we agreed to move her.
    
    This doesn't give me the warmest feeling
    
    Donna

    Donna,
    
    did you ask why they want to move her, and did they have a reason?
    
    there may be a good one, but I would want to hear it from them and also
    request a copy of the  written orders for this.
    
    meg, who learned requesting the stuff in writing generally gets you
    what is best for all.

    Yup we asked.. 
    
    They said that there more babies that were in worse shape that needed
    the bed space.
    
    I feell that harvard wants her out because the cost is so high to have
    her in brighams.
    
    Had a 45 minute phone call with harvard and we agreed that she wouldn;t
    be moved until ed saw the nashua facilty and then if he felt that the
    faclity wasn;t best for nina then we would re discuss the issue.  but
    thatshe wouldn'tn be moved until after the holidays.

    Donna,
    
    If you do not want her moved, then don't allow it.  It sounds like the
    HMO is directing the move, not the doctors.  However, it is not 
    uncommon for stable kids to move to home hospitals....In fact it may
    be to everyone's benefit for some of these reasons:
    
    - The smaller hospital may have less activity which may translate 
      to a more quiet restful environment for Nina to feed and grow
    
    - You can begin to bring her pediatrician into the picture, this will
      help with the transition when she is discharged
    
    - If she is the smallest in the home hospital, she may get more
    attention from the nursing staff.
    
    We agonized over Shannon's move from Dartmouth to Elliot hospital's NICU
    but once we made the decision, it was the best for all.  Not to mention
    that I could feed her several times a day and have a life beyond the
    hospital;^)
    
    Remember, now that she is stable, the nurses and nurse practioners are
    the main care givers, the ratio of doctors to babies should not be a 
    concern.  The doctors will continue to round on her probably twice 
    a day, but the nurses are really "in charge".  I would suggest that you
    find a primary care nurse with whom you can get along -- they help
    tremendously and teach you all you need to know before you bring the
    baby home for good.  I happen to know at least one of the NICU nurses
    at Nashua Memorial from Courtney's stay at Elliot, she was super!
    
    
    Good luck, and don't let that insurance company force you to do
    anything you don't want!!
    
    beth

    Donna,
    
    I have no experience in this area, but I am a mother and I would like to
    pass on the best advice my mother ever gave me:
    
    	"Listen to everyone and then follow your instincts"
    
    In this case, if you want her to stay, then use the bureaucracy to
    your advantage!  Ask (as suggested earlier) for everything in writing.
    "Appeal" the decisions.  In the meantime, she'll be where you want her,
    getting bigger and stronger.
    
    Good luck!
    

    Brigham used to have a general policy that any baby transferred there
    got transferred out as soon as possible.  Nina would be considered a
    transfer even though you had here there because you weren't planning to
    have her there, and your doctor isn't on staff there. With us, they
    didn't even talk about transferring Jessica out, and had pushed her all
    the way from intensive care to intermediate care to the discharge room
    because Brad was still in intensive care for all that time. But they
    asked us about transferring him out literally 1/2 hour after we saw him
    the morning after he extubated himself. They definitely do not waste
    any time.
    
    However, the choice is still yours, and you can refuse the transfer. I
    pushed on that and found out that they cannot force you to allow the
    transfer, and certain conditions have to be met before a baby can be
    transferred like they can't be intubated, and I think they can't have a
    central line. I know Brad's was removed remarkably fast once he was
    extubated and they wanted him out of there even though we had been
    pushing to get it taken out for some time.
    
    I also agree that there are some advantages to a smaller NICU.  If the
    other hospital is closer, you can spend less time on the road and more
    time with Nina [with us, it was still an hour away, but parking was
    free and it only housed about 12-16 babies, so was fairly small]. And
    if Nina is the smallest, she will most likely get a lot of attention.
    Brad was not only the smallest, he was also the most challenging. 
    
    Is there a chance that any of the doctors doing rotation at Children's
    will be at the new hospital? I ask because the staff doctors at
    Winchester where Brad went were all part of the Joint Program of
    Neonatology, so they had all had Brad at one time or another.
    
    And I don't know what problems Nina has [Brad had a whole host of
    problems and was actually beyond the capabilities of Winchester, but
    moving him was still the best thing for him at the time], but if most
    of her problems are resolved and growing is the only thing left for
    criteria to be met before release, moving her may be the best thing.
    
    And I do agree with the nurse's assessment that there are sicker babies
    who could use  the bed. After all, someone probably transferred out so
    that Nina had a bed, and you can see how much good that did for her. 
    We actually put quite a lot of weight on that particular argument
    because Brad had been such a sick baby, and 2 babies had been
    transferred out to make room for my twins. Brad would not have survived
    if he had been moved, and we almost lost him too many times to not
    allow another baby that bed to get a chance.
    
    It's your decision, and you need to do what's best for your baby. They
    can't force you to move her, so take all the information, and decide
    what you think is the best thing to do, and do it.
    
    Regards,
    Cathy

    
    
    I also agree with most of the last few notes.  Follow your own
    feelings.  My son was in the NICU in Memorial, Worcester and my HMO's
    "traditional" plan was to move him to another hospital once he reached
    the "growing" premie stage.  He still was not bottle fed, was in a
    isolet and needed oxygen.  The other hospital did not have the round
    the clock NICU staff coverage and I felt that even though other children 
    may do well there, Kevin still had too many "things" to work out and I felt
    that the change would be disruptive and stressful to him and would
    result in possible weight loss, meaning more time to be in the
    hospital and meaning more longer run expenses for the HMO.  I also felt
    and express it very clearly and businesslike (not in a wildly nervous
    mother way, that I was anyway) that although a written history would go to
    the new hospital, the people the "knew" Kevin and his history could not
    be replaced at the new hospital.  
    
    I just stuck to my ground, asked for a patient advocate and stressed
    that not moving Kevin would get him better faster and would cost the
    HMO less in the long run.  I just stuck to my gun and they agreed to
    have him stay.  So again, make your descision.  If you feel Nina
    would be better off in her current hospital don't back down.  If you
    feel that the change will not make a difference in her growth and
    recovery, then that's your answer, but don't feel bad if you buck the
    system.  I was told once in the hospital by a wonderful woman that
    don't apoligize for upsetting the applecart for the sake of your child. 
    That's your job and no one else will be working for your child like you
    and your husband!!
    
    Beth 
                                                               

    
    
    	Nina update.. 
    
    	Nina has moved to a crib,  she has reach 4pds last night and they
    feel she is ready.  She has started to take a bottle but, she is
    finding it very taxing still 
    
    	She is getting to be a very big girl and will probably come home at
    the end of the month.
    
    We still have not decided to move Nina but, we are leaning on leaving
    her there for the last 4 weeks.  
    
    Donna

Donna, you didn't actually ask our opinions but you seem open enough to them
so I will add mine.  I have had both my babies in NICU and Justin later also
in Pediatric ICU.  From what I know of Nina's situation I would say to move
her.  I realize it's hard to move her from a place where you know the staff
and they know Nina, but it may save the life of another child or a few other
children, and it doesn't sound like Nina will really gain that much from 
remaining where she is.  She's doing *great*!  I am just amazed and pleased
for you, and because of how well she is doing I don't anticipate any
problems.

Of course, I may have missed something, or there may be something we in notes
don't know about, but my opinions on based on my own experiences of what
my babies went through and what I saw with other babies in the NICU.  There's
a lot of babies out there who are desparate to get as healthy as Nina.

       Carol

    Donna,
    
    I think I have to agree with Carol.  Nina sounds like she's doing
    great!  I can't believe how big she's gotten!  Jason came home w/ us
    when he was just 4 1/2 pounds, and while it was kind of scarey to have
    such a TINY baby, he did just fine.  Both my last two were born at
    (what was then) Nashua Memorial, and they really have a lot of good
    Drs/Nurses available ... and I think you'd probably enjoy popping out
    at lunch time to say Hello! to her too .... especially around the
    holidays.
    
    But you still have to go with your gut ...
    
    Good Luck!
    Patty
    

    
    
    	Wonderful News Nina came off her oxegen last night.. She only needs
    it when she is eating.
    
    	She will be coming home very soon.  Around the 18th of DEcember.
    
    Thank you all for your prayers and good wishes.
    
    Donna

Merry Christmas, Donna and Family.

    What a gift!  It was sooooooooooo good to see you here at LKG the other
    day and now to see this news.  My best to you and Nina and Ed.  You
    have been through so very much.  God bless you all and Happy Holidays!
    
    
    Lin
    

   What a wonderful early Xmas present !!!!!!

   Debbi

    
    
    AWESOME!!!!!!!!!!!
    
    
    		What an *EXCELLENT* Christmas gift!!
    
    Congratulations to all three of you!
    
    

I was hoping that might happen!  Congratulations!!  :-)

      Carol

    I have been following this string and have thought of you and your
    family often - this is GREAT news!  What a wonderful Christmas gift!!
    Congratulations!
    
    Lila
    

I also have been following this note and sending best wishes
your way.

Enjoy your special Christmas...Iris

That's wonderful news.  I well remember taking home a baby who weighed less 
than some grocery items (my little tub of margerine!)

Chele

    This is my first time entering a note in this file.  I have read the
    entire note and can feel every bit of whats been going on.
    
    I myself have had a miscarrage, got pregnant with twins (have two 
    beautiful children boy and girl now 3 1/2 yrs old).  At 13 months old
    my son fell out of a second story window (apart of me died that day),
    but thanks to god is a live.  He substained three skulls fractures a
    hematoma and quite a long road ahead for recovery.  Between operations
    most recent 8hr craniotomy and duroplasty and the upcoming one this
    spring to put a plate in his head mine and my husbands stress level is
    maxed.  He has been wearing a helmet for 2yrs to protect his head from
    injury do to the hole the size of a tennis ball on the side of this
    head (like the soft spot when a baby is born) where there is know
    skull.  He's such a love... We just recently found out that my daughter
    now has to have surgery in January for reflux.  
    
    Thanks to all of your notes I don't feel as frantic as I was.  I just
    wanted to ask if you all could say a little prayer for my children as I
    have seen and experienced before from the employees at Digital that the
    power of prayer and support that is offered during such trying times
    WORKS my son if living proof!
    
    Thank you
    
    Christine

    You certainly have my prayers...as to the plate, I roomed
    with a fellow in the Army who was involved in a prison break
    when he had been one of the guards and suffered a blow to
    his right temple that must have been almost as severe as
    your son's when he fell out of the window.  He had a plate
    in his head as well and he did quite well...so keep your
    support for him up and we'll keep the support for your
    family up from this end at this season especially.
    
    Blessings to you
    
    Jim

Annie Johnston (POWDML::AJOHNSTON) went in for an ultrasound yesterday at 16
weeks pregnant. An hour later she started leaking amniotic fluid. 

She can use prayers and warm thoughts right now.  She is on bedrest for
the next several days.  She does not have access to a computer terminal.

The good news is that she has not leaked in something like 37 hours.

     Carol

Praying for Annie


Chele

    
       Same here, hope all goes well for her...
    
       Rosie

    And my prayers too. 

    well, I'm back [on half-days this week]
    
    Prayers, _total_ bedrest, and more prayers and I sealed over. The
    doctor called Christmas day to say that I can go back to my life, but
    work up to it gradually.
    
    After being the 1 in a 100+ to develop complications from amnio, I
    beat the odds to be 1 in 3 that experiences a total recovery.
    
    Words cannot express my relief, my joy, and my gratitude for friends
    all over who kept us in their hearts.
    
    [I have a _very_ active baby who _hates_ the ultrasound noise. I've
    never seen anything swim so fast to get away... ;^) ]
    
      Annie

    
         Glad to hear it Annie!
    
      Hugs,
    
        Rosie

I'm so glad you are doing better, Annie.  How frightening to have been
experiencing this! 

I apologize to all for my hurriedly writing "ultrasound" instead of
"amniocentesis".  I must have been thinking of the ultrasound they do in order
to place the needle for the amnio!!! 

Once again, glad things are better, Annie!!

    Carol

    Special thoughts and blessings from my family, too.

    
    
    Christine,
    
    I will keep your family in my thoughts and prayers.
    Best wishes and God bless.
    
    Chris

    Hi Chris,
    
    As you know I will always keep you and yours in my prayers. Little
    Woody & Samantha are just the sweetest little things. Come see us
    soon, and keep us all updated on how they are doing if you can.
    
    Sherry

    
    Anyone have news on Donna Fultz and preemie baby Nina?
    
    Last update was early December...
    
    

    It's funny you should ask...I was thinking that I should post something
    in here but just didn't get around to it.  Donna brought Nina into work
    about 3 weeks ago.  She is just perfect!  She weighed 7+ lbs at the
    time and was a little less than a month beyond her scheduled due date,
    which was right around January 1.
    
    So far, she shows no signs of having any problems as a result of her
    early arrival.  She is being christined this Sunday.
    
    Way to go!
    

    
    
    Nina Update.. 
    
    Nina is now 9 pds. and is a smiling giggling wonderful child.
    
    The doctors can't belive how great she is doing.  she is now being
    measured against children that are 2 months old.  
    
    It seems such a long time ago that she was in the hospital.
    
    Next week we go for a hearing check, but, she hears really well. 
    
    She has changed my life. Shehardly ever cries, and she was 
    happy threw the christening. 
    
    The house was jammed with welll wishers and Nina was taking a nap up
    stairs.. 
    
    She loves confusion and lots of people talking. 
    
    Starting to look for a sitter for 3:00 in afternoon till 6::00 at
    night I will be going back to work in May.. I took 5 months off
    
    Well that's all for now. 
    
    Donna 

	That's wonderful news, Donna!

	Karen

    Nina update.
    
    Nina is now a whooping 10 pds.. and is starting on real food.
    
    She had her eye check and they are in perfect order and her hearing 
    is right on track.  The docotrs all feel she is doing so wonderful
    
    I love being at home with her and seeing her smile and coo.
    
    Talk to all soon.
    
    Donna

    That's wonderful news Donna!  It sounds like she is doing great!
    
    Please keep us posted on her progress.  We think about her often.
    
    	Take care and ENJOY!
    		Linda
    

    After hearing about Oklahoma City, was I the only one in tears while
    on the way to pick up a little one who got many extra hugs and kisses
    all night?  My thoughts and prayers are with the people out there.
    
    sandy

    I just kept on saying "those poor little babies"... and seeing the
    survivors all messed up and trembling didn't help.
    
    my kids are off visiting their grandparents this week -- i sure wish
    they were closer right now.
    
    sandy

    It's bad enough when it's just adults involved.
    
    I sat in my office and cried for all those little children and their
    parents, who had probably felt so happy that they could have their little
    ones close by while they worked.
    
    Had a very difficult time waiting until 5:00 when I could run off and
    pick up Sarah.
                    
    /Susan

    I'm asking prayers for a friend's child who's in the NICU at Children's
    Hospital in Boston.
    
    He's not yet a month old, he's doing _much_ better ... still the
    earliest anticipated release date is sometime in November.
    
    I've not included names or identifying information, but your prayers
    and good thoughts for this little boy and his parents are gratefully
    received.
    
      Annie

    Annie,

    will keep the little one and his family in my prayers !
    
    Debbi

<    will keep the little one and his family in my prayers !

Me, too, Annie.  Any update?

      Carol 

    He's now off of most of the machines. Still at Children's with no
    anticipated date of transfer or discharge.
    
    He's moved from ECMO [?] to a regular respirator [he breaths with it
    instead of being entirely breathed for, I think]. He's now taking
    breastmilk through his feeding tube. He's off dialysis.
    
    He's doing much better and family and care providers don't have that
    pinched and guarded lookd when they talk about him now.
    
      Annie

     Could people say a few prayers for a couple of kids at my son's 
     school (and their dad) ???

     I picked my son Matt up from school yesterday (5th grade) and
     he gave me one of the *biggest* hugs - when I asked what was going
     on, he told me it was part of his "homework" - one of his classmates
     had just lost her mom in a car accident the night before.

     I know the woman - not well, but we always chatted when we saw each
     other at school events - her two kids, girl in Matt's class, boy in
     the 4th grade, are both *nice* kids - Matt and the daughter get along
     well and he knows the brother too and plays with him sometimes.....
     Matt called the woman "the almost perfect mom" 'cause she could be
     there after school to pick up the kids, was able to go on field trips
     with them and, in general, was just a really nice lady.......

     I feel *so* badly for these kids and for their dad.  Matt and I called
     them last night and the father says they're all just in shock at the
     moment.  I offered to help any way we can, whether it's having the
     kids over for a little while (after the funeral and all is done) so
     he can have some time to himself, helping the kids get caught back
     up on school work, whatever.  Matt talked to his classmate and said
     she didn't *sound* too different so I tried to explain to him that
     it probably hasn't really sunk in yet.......

     I don't know what else to do now except pray that they can all get
     through the next few days "ok" - and kick myself for not having 
     gotten to know her better!

     Debbi

    

    
         That's so sad. These kids are lucky to have someone like you
    and your family to support them. That's the best you can do. They'll
    be in my prayers.
    
       Take care,
    
        Rosie

	All too familiar ... a friend of ours at church just died
	from malignant brain tumors.  She was 35, and left behind
	a husband and 2 kids.  Our church has been organizing dinners
	for them all month (before and after her death).  I brought
	dinner last week, and her husband joined me and my kids for
	lunch at McDonalds.  He was so great with my kids, and they
	warmed up to him *very* quickly.  He's now struggling with
	finding daycare for his kids for the first time (they are 9
	and 6, and Helen stayed at home with them).  Prayer and
	being there are the best medecine.

You reminded me of how much help people were when I needed.

Phone calls from people that helped so much. Just knowing somebody cared.
It's funny I bumped into two people that were a great comfort just recently.
I didn't even recognise them. They were at different places. I rembered them
both but I just didn't recognise them.

I'll pray for them.

I've found that children only have so much ability for grief. They can only do
so much. I know my daughter has a lifetime to grieve her loss.

Peter.

    re : .280
    
    ECMO - I know exactly what the family in .280 is going through.  My 
    son was on ECMO for about 2 weeks in 1988 when it was still an 
    experimental therapy and my heart goes out to that family..  
    My son is now a healthy 7 year old.   ECMO saved his life.
    My prayers are with you.   Please have the family join the ECMO 
    support group.  They do wonders!.  My prayers are with that 
    boy and the family.
    
    - Brenda
         
    
    

    update on the child in .277 and .280
    
    He's been transferred from Children's Hospital back to the hospital
    where he was born. He's not on any sort of support. His kidneys are
    doing well, so he doesn't need dialysis. He's doing very well, although
    there's still no revised 'going home date.'
    
    Considering all of his good progress over the past week and a half, his
    parents are begining to thrive again as well.
    
      Annie

    my friends were able to take their son home from the hospital this past
    Friday night.
    
    thank you for your prayers and support.
    
      Annie

              <<< Note 715.287 by POWDML::AJOHNSTON "beannachd" >>>

>>    my friends were able to take their son home from the hospital this past
>>    Friday night.
    
>>    thank you for your prayers and support.
    
      Annie,

	All right !!!!  Good news !