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Conference moira::parenting_v3

Title:Parenting
Notice:READ 1.27 BEFORE WRITING
Moderator:CSC32::DUBOIS
Created:Wed May 30 1990
Last Modified:Tue May 27 1997
Last Successful Update:Fri Jun 06 1997
Number of topics:1364
Total number of notes:23848

1360.0. "Need info/advice on premature baby" by ELMAGO::PHUNTLEY () Sat Apr 11 1992 05:03

    I am interested in any and all information, experience anyone has had
    with premie babies.  I have read through all of 936 and 1243 but am
    looking more for personal histories, what to expect, success stories,
    etc.
    
    My niece, Tara Kristen, was born 3 weeks ago today at 26.5 gestational
    weeks.  She weighed 1 lb. 12.5 ozs. and was 13 inches long.  She
    finally made 2 pounds this past Wednesday.  From all information that I
    have been given she is doing much better than expected.  She has been
    able to take breast milk through a tube on occasion over the last week
    (supplemented by TPN), is breathing on her own(also with help from a
    "pressure machine" because she has episodes of "As and Bs"--apnea and 
    something?), no lung or heart defects.  The doctors have told us it
    will be like a rollercoaster over the next few months--good days and
    bad days.  So far the days have been as good as we can really hope for.
    The doctors say it will be at least June (her original due date) before
    we can even begin to plan her homecoming.  I visit the hospital daily
    to see her through the window of the NICU and cheer her on.
    
    I am also having a hard time deciding what to do regarding gifts,
    holidays with the family, etc.  Do I wait until time nears for her to
    come home (right now she is not in any clothes--if she was 12 inch doll
    clothes would fit her!), do we get gifts for the holidays (Easter,
    etc.) and save them for her homecoming, etc.  I guess one of my big
    fears is that if she doesn't make it (please God no!) that my brother
    and sister in law will have all of this baby stuff to deal with.  Not
    that all of us haven't already become VERY attached to Tara--she is our
    little girl wonder!
    
    Any help or info is appreciated.
    
    I can also be reached at Elmago::phuntley.
    
    Thanks!
    Pam
    
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1360.1More than you probably wanted to knowMEMIT::GIUNTAMon Apr 13 1992 00:2960
    I had my twins at 28 weeks, so can probably give you some advice.  From
    what you describe, I'd say she is doing quite well.  She will most
    likely continue to have the A&B's (that's apnea which is when they
    forget to breathe, and bradycardia which is when they drop their heart
    rates and usually happens in conjunction with the apnea).  Babies
    don't know they are supposed to breathe til about 35 weeks or so, so
    they forget sometimes.  That's a hard concept to accept because adults
    don't think about breathing, but it's not automatic.  
    
    It sounds like she's on a ventilator for breathing.  Expect that for 
    some time which could be anything from a week to many weeks.  They 
    will try to wean her from that as soon as she is able to breathe on 
    her own, and will most likely put her on supplemental oxygen once 
    she's off the vent.  She may or may not need supplemental oxygen at 
    home. That depends on lots of things.  Jessica was on the vent for 
    3 days, but on supplemental oxygen for about 9 weeks (she came home 
    at 10 weeks).  Brad was on the vent for 8 1/2 weeks til he pulled 
    it out himselm (extubated is the word the hospital will use). He was 
    on supplemental oxygen for around 20 weeks or so which included a 
    2-week stint at home.  If she has difficulty weaning, there are many
    things they can try including steroids which is usually a last effort
    due to the side-effects.  As you will learn, everything has trade-offs,
    and nothing is done that doesn't effect something else, so it becomes
    challenging to balance things.  Remember that premature girls do much
    bettter than boys, so she has that going for her. 
    
    There will be many things they will check for, and many things that
    just sort of happen.  Consequently, it's a big roller coaster with
    things going great one day and poorly the next.  
    
    As far as gifts go, a lot of people waited til Brad came home.  In
    fact, he's 11 months old, and I'm still getting gifts from people who
    wanted to wait til he was OK.  Since he didn't come home til 6 1/2
    months, and he only weighed about 8 pounds at the time, I was glad I
    had waited to get things.  I think premature clothing is a waste of
    money since she won't get to wear it.  They will let her have her own
    clothes eventually, but probably not til she's moved out of the ICU and
    into either an intermediate room or a Level 2 nursery.  Basically, once
    they don't need to get to her instantly anymore, she can have her own
    things.  I imagine she's still on a warming table. From there, she will
    go to an incubator, and then to an open bed.
    
    And I wouldn't get any Easter presents for her.  She won't
    realistically be home til somewhere between 36 and 40 weeks assuming
    everything goes smoothly and there are no complications.  That's a
    pretty big assumption, but then Jessica came home at 38 weeks so it is
    possible.
    
    That's probably enough to get you going.  Call anytime or send me mail
    as things progress.  I spent quite a bit of time in the NICU with my
    kids.  They used to tell us that 28-weekers came with medical degrees
    for the parents.  Believe it.  Your brother and sister-in-law as well
    as your family are about to learn a whole lot more about medical things
    than you ever hoped for.
    
    What hospital is she in?  Brad spent 8 weeks at the NICU in Brigham, 1
    week at the NICU in Children's, and 7 weeks at the NICU in Winchester.
    
    Best of luck.  I'll say a few prayers.
    Cathy
1360.2our miracle childKAOFS::M_FETTalias Mrs.BarneyMon Apr 13 1992 12:1526
    In our family we too  have a miracle child; my god-daughter (only
    child of a 1st cousin I am very close to) was born at 32 weeks, just
    under 2 pounds. 
    She had to be given drugs so that her heart muscle would "finish" 
    developing, and fit into the palm of her father's hand. I believe she
    was in the hospital until her original due date, or perhaps left a 
    little early. 
    "doll clothes" is right -- her mother literally had to buy patterns for
    doll clothes and sew all of it herself so that Lisette had something
    to wear, and she had to do this for SOME TIME after the baby came 
    home. 
    As far as gifts are concerned, I would suggest something more generic
    than baby things (something that can be used for baby but can be 
    perhaps put to other use?) -- maybe some sort of kindness for 
    worried parents. It was difficult for me to deal with the baby things
    we'd gotten for Daniel after we lost him, but on the other hand, 
    depending on the people in question, they may see a baby gift as 
    a sign of faith that all will be well.
     
    I'm glad baby has no heart or lung troubles -- these seem to be 
    common problems in preemies. 
    
    My thoughts are with the baby and your family,
    
    Monica
    
1360.3another nicu grad offers support!STUDIO::POIRIERMon Apr 13 1992 12:2237
    Pam,
    
    I am sending warm thoughts your way!  The next few months will be very
    hard on the family...But given your description, things sound positive.
    My daughter was born at 26 weeks too!  She had almost everything in the
    premature baby book, but what scared us most was the Interventricular
    Hemmorage and hydrocephlas (sp??).  She is doing very very well (I
    don't use the N word and *hate* to hear it from anyone)...
    
    Shannon arrived home exactly one week before her due date.
    
    
    Is the baby on a vent or on CPAP?  I am confused since you said she is 
    breathing on her own....A vent will allow the child to breathe alone
    and offers a few deep breaths to supplement..(usually blue tubing to
    the mouth). CPAP (continuous positive airway pressure) keeps the airway 
    open through the nose.... 
    
    
    My opinion of gift giving differs from Cathy's(-1).  I was hurt that no one
    acknowleged a child I tried years to have....I was a new mother after
    all.  My own parents and inlaws did not visit Shannon until she was
    over two months old. In retrospect, I understand why people had such 
    a hard time talking about her but it was difficult at the time.  My
    husband and I tried to smooth things over to make it less difficult on
    the family.
    
    I found a lot of useful information in the Premature Baby Book.  I can
    get you a 800 number to call for one I think it was around $15.00.  it
    was my bible for 3+ months.  It is out on loan right now, otherwise I 
    would send it to you....
    
    I would be happy to talk one on one, or send mail.  
    
    God Bless.
    
    beth
1360.4CSLALL::LMURPHYMon Apr 13 1992 12:4910
    My best friend had twins 3 months early 1.14 and 2.1 lbs.  Kelly was in the
    hospital for 3 months....Danny almost 9.  I went to visit almost every day
    and was very positive.  When I went to see Jean the day she delivered I 
    didn't know what to do, I brought flowers and a hot fudge sundae.  Then I 
    brought the children gifts.  I think I cried every time I left the hospital
    not knowing if I'd see them again.  But they are 5 year old beautiful kids 
    now.  And a few years ago Jean told me how much my confidence helped her 
    and remarked that I was one of the few who thought to give baby gifts to 
    her brand new babies and how much that meant to her......I would definitely
    acknowledge this beautiful new life the same you would any other.
1360.5The cards, gifts and acknowledgements were SUPPORTIVE!CALS::JENSENMon Apr 13 1992 13:2940
When we adopted our daughter (at birth), we came up against many issues which
positioned our "daughter-to-be" into the "highest risk" category (probably will
not be placed for adoption!).

Although we didn't have a baby shower until 6 weeks after Juli actually
joined us (5th day after birth) ... those five days were living hell.  At one
point her biological mother took Juli home with her!

Jim wanted to take the crib down ... I just wanted to close the nursery door
and leave everything intact until it was FOR SURE a "go" or "no-go".  I was
dealing with enough emotions to NOT WANT to deal with the feelings that people
(Jim included!) didn't believe it would end on a positive note! 

For me, it was very important for people to react in a positive way.  Even
after Juli was finally placed with us, we were still dealing with a "high
risk" adoption (yes, we could lose it to the judicial process!).  People
were so cautious.  They were no nervous about giving cards, gifts, or
any kind of acknowledgement or support for fear if we lost Juli we would have
all these memories ... but NEITHER CAN YOU IGNORE this blessing, even if it
is short-lived!

For me, it was important for people to acknowledge Juli's birth and provide
us with lots of love and support ... that's what got us through one of the
most difficult times of our lives.  I will always cherish the little outfit my
sister RAN OUT and got Juli when we received the phone call (at a family
get-to-gether!) and the little squeaky duck my niece bought ... they took a
chance, but I needed the gifts ... I needed the recognition ... I needed the
support ... and I have the memories.

I think a "little something special" now and every day (holiday or not) is
thoughtful and loving AND SUPPORTIVE  (but you know your brother and
sister-in-law better than we do ... either try to figure out what their feelings
would be or better yet ... just ask them!).

God Bless ... my thoughts and prayers are with you.  Try to think positive
good thoughts so you don't deprive yourself of the memories ... they'll be
so important to you and your family no matter what direction things go.

Dottie
1360.6Don't hesitate to celebrate this lifeCSTEAM::WRIGHTMon Apr 13 1992 14:1125
    My sister had a baby girl at 30 (I think) weeks, weighing 3.0 lbs.  She	
    is just fine now at 3 years old.  
    
    After seeing what my sister and her husband went through, I would say 
    DEFINITELY bring gifts, just as you would have done if the baby was
    not premature.  Although the inclination to not give anything until the
    baby is out of danger is very well-intentioned (most people are afraid
    that they will just make the grieving harder on the parents if things 
    don't work out), I saw that the people who "held off" on doing or
    giving anything until later hurt my sister's feelings.  It was as if
    they were holding back from getting involved with the baby, or even
    falling in love with the baby.  But even if she had lived only a short
    while, her arrival and life were still something that her parents 
    would have wanted celebrated.
    
    On a practical note, my sister most appreciated things like little toys
    and blankets and picture albums or frames.  Clothes didn't work out as
    well.  Infants sizes are hard enough to fit, even in a full-term baby.
    
    The nurses at the Infant Critical Care Unit at Brigham & Womens, where
    my sister had her baby, recommended that each preemie have one small,
    soft toy in the crib/incubator (or whatever they were called).  I think
    this served a symbolic role for the parents and family visiting.  It
    was an affirmation that this baby, who frankly didn't look much like
    the babies in the regular nursery, was already her own person.  
1360.7Keep the faithSMURF::WOODWARDMon Apr 13 1992 19:1328
    I had 27.5 week twins in January of this year, and what a rollercoaster
    ride it was.  I'm happy to say they both are home now after a 2.5 month
    hospital stay...
    
    Your niece sounds like she is doing great.  Taking food through a tube
    is a VERY big milestone.  Other things to look at are the head
    ultrasounds for brain bleeds.  At the 26-28 weeks, your niece runs a
    40/50% chance of bleeding into her ventricals.  These bleeds are graded
    1-4 on serverity (4 being the worst).  These bleeds usually show up by
    the 2 or 3rd week, so if they haven't seen any yet, she might have
    lucked out here. 
    
    Just keep the faith and don't get too hung up on daily progress.  She
    will take two steps forward and several back.  The main goal is to keep
    progressing over the long term....
    
    As for gifts, I would treat this niece as "normal" as possible.  I was
    never hurt receiving a gift through this ordeal... I was hurt by people
    ignoring that it took place...
    
    For more info on premie babies, there are several good books on the
    subject that will give you all of the technical details.  I know
    reading them depressed my wife, but for me it allowed me to talk to the
    doctors using their terms...
    
    /jim 
    
    
1360.8update on TaraELMAGO::PHUNTLEYTue Apr 14 1992 00:3325
    It wasn't a very good weekend for Tara.  She developed pnuemonia on her
    right side, some small brain bleeds, and an non-specific infection. 
    She was taken off of her breast milk feedings and put back on TPN.
    She is on a ventilator now and had a blood transfusion last night (just 
    to replenish her supply from all the tests).  She is still "stable"
    however and seems to be comfortable and resting well.  God, I hate that
    word-stable-we have heard it so much in the last three weeks.  Tara is
    in an incubator and has been since she was a couple days old.  The
    physical therapist was in today and said her reflexes, muscle tone,
    etc. are exceptional for as early as she was.
    
    As for gifts, we had given her a few small stuffed animals and I wrote 
    two very heart felt poems (will put in the next note) and try to take
    lunch to the hospital, etc. so I guess we are doing what we can for
    now.
    
    I guess this is just the "roller coaster" they told us to expect.  It
    just feels exhausting--I'm sure Chris and Jamie (my bil and sil) are 
    wiped out!
    
    Thanks for the support and info.  If anybody has names of specific
    books and authors on premies I would appreciate it.
    
    Peace,
    Pam
1360.9Poems for TaraELMAGO::PHUNTLEYTue Apr 14 1992 00:4852
    
              Tara Kristen
    
    Tara Kristen, sent from above
    To teach us true patience and love
    Yes, she may struggle, but it's a fight she will win
    We gather our courage from God and our friends
    We stand and we watch her, fragile and frail
    Only God knows what the next months entail
    We think of her often, offer small prayers
    We picture her, there, with her soft downy hair
    She came much too early, into the world
    We think as we watch her, little hands curled
    She is so perfect, little fingers and toes
    We wish we could give her strength as she grows
    It is so hard, being away
    We wish she could be home to stay
    But it isn't to be, she needs all the help
    Of doctors and nurses, whose hearts she does melt
    Her mommy and daddy, they suffer most
    On her homecoming day, they have the best toast,
    "To our love and our laughter, Tara Kristen,
    Finally she's home and the distance has ended."
    God bless her and keep her there in your hand 
    Protect her and help her all that you can.
    
    
           Here and Now
    Tara Kristen, born the first day of spring
    For the love and the sunshine she's sure to bring
    She struggle like the flowers to emerge from the ground
    She listens and hears us, turns her head to the sound
    She came much too early, before we all planned
    Yet she reaches and grasps for Life with her hands
    She's fighting for life with each breath she breathes
    Just like the trees with all their new leaves
    She's ended the winter, brought sun to our lives
    OUr hopes shall be lifted with each of her cries
    She's special, a miracle in sight
    Life is worth living, she's going to fight
    She is so tiny, fragile and pure
    She is a treasure, of this we're all sure
    She's taught us to live a day at a time
    That it's not worth worrying over pennies and dimes
    We pray she will make it, some way and somehow,
    God, please protect her in the here and the now.
    
    BTW-she is in the NICU at Pres. Hospital in Albuquerque, New Mexico,
    which has a very good reputation for their premie care.
    
    Pam
    
1360.10Hope this helps a littleAPACHE::FRIEDRICHSKeep'm straight 'n levelTue Apr 14 1992 01:5951
    I'm glad to hear that Tara is doing so well.  Don't worry if progress
    is slow...I used to grade progress on a weekly basis rather than daily
    so I didn't panic day to day.
    
    Our son was born at 30 weeks, 1.5 lbs, and stayed in the hospital for 3
    months.  He is still classified as delayed in speech and some motor
    development but is otherwise your typical 2.5 year old.  He had no
    major results of preemiehood, only oxygen and jaundice.  Richard also
    had a nonspecific infection that was cured and never discovered the
    source.  It did affect his lungs and he had frequent doses of lacix
    (like the race horses) to remove fluid.  It is not a problem to use. 
    Jaundice is relieved by blood transfusions.  We did directed donations
    for these when he was getting daily transfusions.  My husband gave. 
    You could look into this for sanity's sake.  Preemie blood is very very
    safe overall so don't worry.  
    
    I have found preemiehood to be v long haul.  Physical therapy has
    transformed into Occupational therapy and speech therapy, soon to be
    special preschool.  Tara should get every opportunity available, after
    comiong home, go for aggressive treatment.
    
    AS for gifts and help.  You might try food for the weary parents.  A
    great depressant for me was the constant phone calls and everyone
    requiring updates daily. You could be a resource for people (relatives)
    to call to give them a rest.  It may not be a problem now, but when
    Tara is just growing and aging to come home, some people may still want
    constant updates.  I found them tiring and relating a .05 lb weight
    gain annoying.  I simply did not answer the phone and called the people
    I chose for support.
    
    The BEST book  The Premature Baby Book.  By Helen Harrison  St. Martins
    Press  This book lists support groups nationwide.  
    
    As for gifts.  I was hurt the most by my grandmother who said "I didn't
    put Richard's birthday in my book until he came home, because I wanted
    to be sure he made it."  Tara will always be their baby, aknowledge her
    to the fullest.  A small car window suction cup animal you can stick to
    the top of the isolet for Tara to watch is a great gift.  You know like
    the Garfield in the car.  Richard still loves a small doggie I bought
    for him his first day and stayed in the isolet throughout.  He refuses
    to share it.
    
    Judge your responses by the attitude of the parents.  Respect their
    right of privacy if the treasure it.  Good luck.  Keep us posted.  HAve
    faith in the medical staff.  I trusted the primary nurse the most.  She
    was my lifeline.  Rely on her\him they are trained to help.
    
    I send my prayers
    
    Corinne
    
1360.11Heather's StoryDEWEYD::CHADSEYTue Apr 14 1992 11:4746
    
    Tara, what a lovely name.  My daughter Heather was born at 23.3 weeks
    gestation.  She weighted 1 lb 3 oz or 576 grams.   In those first few
    weeks of live we measured weight gains by grams.  When she was born her
    eyes had not yet opened.  She had many, many ups and downs through that
    first year of life.  She spent 4 1/2 months in a NICU and after coming
    home got Whooping Cough (of all things) and spent anouther month in
    anouther hospital.   Heather had a grade 1 intercranial bleed at 3 days
    old.  By her fifth day of life an infection was so attacking her body
    that she had begun to turn black.  Somehow this child, who only had a
    10% or 20% chance of living is with us today and is doing extremely
    well.   
    
    When Heather was born, I bought a photo album (one with paper pages)
    and took a picture everyday.   Below the picture I wrote my feelings on
    that day.  I felt and still do that each day she was alive was a
    precious gift.  Heather taught me much about myself and my world.  What
    I appreciated the most was just having people I could talk to about of
    I was feeling.  I had many offers of help and support from this notes
    file which warmed my heart to no end.   
    
    I did buy premie clothes and Heather wore them for quite a while after
    coming home.  
    
    Heather was on a vent for 3 months and oxegan for a year.  She came
    home on a monitor for the B's and A's and was also on that a year.  
    
    Heather is still small, at 3 1/2 she weights about 23 or 24 lbs.  She says
    she wants to be a ballerina someday.  Given the determination this
    child has exibited from birth I am sure she will be what ever she
    dreams of being.
    
    Heather always liked a very soft music box in her isolet.  I believe
    some parents also have taped themselves singing and gotten very small 
    cassette players for their babies.
    
    Enjoy each milestone and each moment with Tara.  She sounds like a
    fighter and she will be in my families prayers.  Just being there for
    your brother and sister in law is probally the greatest gift you can
    give.  I also enjoyed having any family that was willing to visit
    Heather with me come. 
    
    Good luck to you and your family,
    
    
    Susan    
1360.12nice..EMDS::CUNNINGHAMTue Apr 14 1992 11:508
    
    Youre poems were beautiful!
    Tears came to my eyes...
    
    Wishing all the best for Tara,
    
    Chris
    
1360.14AKOCOA::TRIPPTue Apr 14 1992 17:0523
    AJ was in NICU at Memorial in Worcester, only  briefly by comparison
    and more because of his surgery immediately after delivery, not because
    he was 9 weeks early and weighed just a few grams under 5 pounds.
    
    What helped me the most was having someone who cared, who was willing
    to listen.  The second most important thing was a tiny teddy bear from
    my mother inlaw, it had a tiny blue embroidered bib that simply said
    "baby" in blue.  It was in his isolette, and eventualy in his crib at
    home.  We still have it on his headboard.
    
    I know the NICU's are funny about allowing anyone but parents and
    grandparents in to see the baby, but for us exceptions were made when
    WE requested it, and if the NICU in general wasn't too busy.  We asked
    that our best friend who had driven from NYC be allowed in, and they
    agreed, at our urging.
    
    We saw the roller coaster of so many lives, and felt the pain of
    everyone of the parents.
    
    Tara is in my thoughts and prayers, and if you feel like buying a gift,
    then go with your feelings!
    
    Lyn
1360.15more suggestionsSTUDIO::POIRIERTue Apr 14 1992 17:2636
    We bought a Polaroid camera when Shannon was a few days old so we could
    immediately mark the date and her weight on the pictures.  We also
    bought a journal which started to be our notes from conversations with
    doctors, but turned into letters to Shannon.  All of her ups and downs 
    and our feelings during them are recorded forever.  Writing our
    feelings along with her condition(s) helped us deal with them
    then...and now it is so good to go back and read how far we have come!!
    
    Bob and I continue to write to her and hope when she gets older she
    will read/understand why she is so special.
    
    Shannon received 10 blood transfusions from the blood bank while in the
    NICU...I still worry about the blood supply, but it was one of those
    things(and there were many) we could not control.  I requested to be
    notified of blood transfusion plans so I could stand at her bedside and
    watch them after one infiltrated and caused a severe wound in her leg.
    The last thing my baby needed was wounding from treatment!  
    
    Just to let you know, I mentioned earlier that Shannon had brain
    bleeds, they were grades II and IV on the right and left sides
    repectively.  She has NO signs of any disabilities to date (she is 15
    months, 12 months adjusted) and took her first steps last week!  I was
    encouraged by one specific doctor who said once that there may be many
    of us who experienced bleeding at birth but because the technology or
    risk wasn't there, we were never diagnosed -- (message = never lose
    hope!)
    
    Shannon also had pneumonia and a collapsed lung, a feeding intolerance, 
    PDA ligation surgery (Patent Ductus Arterosis) suspected septus etc.
    etc. all in her first month of life. You would never know any of these
    things if you met her.  She is happy and healthy and a miracle worth
    noting!
    
    Best to Tara!
    
    -beth 
1360.16take some picturesMEMIT::GIUNTATue Apr 14 1992 17:5762
My terminal is acting peculiar, so I'm re-entering this which originally
was .13.

Just this morning I was thinking about mentioning that she will most likely
require some blood transfusions, and  I come in and see your note.  Blood
transfusions are very common for premature babies since they take blood
frequently for all sorts of tests (it is not uncommon to draw blood hourly
when making changes to the ventilator rate and pressure), and they don't
start to make their own blood for a while.  You may be more comfortable having
a directed donor, but you should start asking around now for the people that
you trust.  The blood supply for newborns tends to be very safe because it
must be CMV-, and about 80% of the population has had CMV.  CMV is a virus that
would feel like a cold to an adult, but can have disastrous effects on an infant
who might get it.  And once you have it, the antibodies or whatever stay in your
bloodstream.  It took us 7 donors, including me at 2 weeks post-partum, to find
someone who was CMV-.  My husband is CMV-, but the babies got my bloodtype, so
we were not able to use his blood.  And to give you an idea of the number of
transfusions,  Jessica got 3 transfusions (2 from the bloodbank and 1 from our
donor) and Brad got 17 transfusions (12 from the bloodbank and 5 from our donor).
All but 1 of Brad's occurred in the NICU.   And if transfusions are a concern,
you have to request that the hospital inform you when they are done since they
do not need permission to do transfusions in the NICU.

And I'd like to join everyone else in saying that cards and gifts are OK,
especially to acknowledge that Tara has been born.  I personally preferred 
getting gifts later since I didn't know when (and at times, if) Brad was coming 
home and wanted to be able to use whatever gifts I got for him. But I looked 
for those cards to acknowledge that I had had them.  I got a lot of general 
flowers, and was quite disappointed that not much said "it's a boy" and "it's 
a girl".  The only ones who sent stuff like that were my folks and my brother.  
Even my mother-in-law said she sent general flowers because she didn't consider 
anything celebratory as appropriate, and I snapped back that I wouldn't have 
loved them any less if they had not survived.  And I have a  sister-in-law that 
never bothered with a card or gift, so my husband and I felt like she was just 
ignoring our children.

I second the suggestion of you acting as a resource for all the relatives to 
call.  We called my folks at least weekly til they came up to stay with us 
during the week, and they would call my aunt and my brother.  Then my aunt and 
brother would pass the word to the world.  When things were really serious, a 
few of my relatives called us personally to find out what was going on and to 
offer support.  That meant a lot to us to know that people were really thinking 
about us.  And once again, my husband's mother and siblings never (and I do mean 
never) bothered to call us the entire time.  If we wanted them to know what 
was going on, we had to call them.  That's still quite a sore spot with us, but 
I suppose at least we know where our kids rate.

Oh, and another suggestion for something in the incubator is something with 
black and white on it because infants see contrast the best at this stage.  I 
ended up making little black and white potholder type things because we couldn't 
find anthing suitable. Brad was always awake, and he just loved staring at those 
things.  And maybe take a few pictures of Tara with some stuffed animal or 
something, and keep the animal for when she is bigger.  We did that with the kids, 
and no one ever believes how small they were when they see the bear the pictures 
were taken with.  I think the kids will get a kick out of seeing how small they 
were when they are much bigger.  

All in all, she really sounds like she is doing quite well.  Keep praying, and 
keep asking those questions.  It looks like there are a few of us in this file 
who have been there and may be able to fill in some of the spaces for you.

Cathy
1360.17ROYALT::PEACOCKFreedom is not free!Tue Apr 14 1992 18:1418
 Something that Cathy said in .16 prompts me to write here...  please
 understand, I have no experience with premature babies from any side
 (parent or relative or friend), this is just a comment about feelings and
 people..
   
 I'm sure that it can be a sore spot as Cathy mentions when some family
 members don't seem to care the way you'd expect, but we're not all
 insensitive or selfish (or.. add your own words here).  Sometimes we don't
 do or say anything because we just don't know what to do, and so by
 default, do nothing.  I don't know Cathy's family (or Cathy for that
 matter), so I have no way to know just how they feel or what the situation
 is there, but for some of us, the perceived insult/slight is not
 intentional.  I'm sure knowing that won't take away the hurt, but maybe it
 will explain it for some.

   Peace,
   
   - Tom
1360.18some thoughts...AKOCOA::TRIPPTue Apr 14 1992 21:4829
    Recently a coworker here had her twins, although they were only a few
    weeks early, both mom and one of the twins had some problems.  One of
    the twins was transferred to an NICU for a week, mom was in the
    hospital for two weeks, and is still recovering in a very slow way.  
    
    We as coworkers have decided to hold off on a baby gift for a while,
    but have already pretty much decided what it will be.  We did manage to
    collect some money on the spur of the momemt when she went out at 32
    weeks STD in premature labor in any case.  We have sent a flowering
    plant to her in the hospital, with a "cheer" card attached, and a card
    to cheer her was circulated in the group.  I, personally, stopped by
    one night on the way home and left, just for the new mom, a cute little
    tin bucket with some bath soaps, bubbles, powder and such.  And told
    her she could look forward to her first bubblebath when she gets to
    feeling better.  I guess I should talk, I just realized I've never sent
    a congratulatory card of my own!
    
    We, as a group have been in touch with her several times a week by
    phone.  I tend not to make the call, I'm always afraid I'd be
    disturbing either her rest or the twins.
    
    However, there were many other plants, flowers and baloons in her room
    the night I went, with congrats and stuffed animals attached.
    
    I know personally how important it is to know you, as the new mom are
    not forgotten.  I plan on stopping up soon with a casserole of some
    kind.
    
    Lyn