T.R | Title | User | Personal Name | Date | Lines |
---|
455.1 | | DYNOSR::CHANG | Little dragons' mommy | Mon Feb 15 1993 17:11 | 9 |
| First, Congratualtions! My friend's sister-in-law just went
through a similar experience. She had 3 embryos. Her doctor
also advised the reduction procedure, due to her age and
health condition. She refused. She now is the proud mommy of
3 little boys. The boys are 6 months old and are doing very well.
I am sure you know what's best for you, your family and babies.
Good luck.
Wendy
|
455.2 | One option | GERBIL::DUPONT | | Mon Feb 15 1993 18:12 | 24 |
|
I would be VERY careful about terminology
on this issue. "Reduce" doesn't sound like
something that will cause potential long term
negative emotions to you, but the act "could"
be very troublesome to you later in life. I
understand the time pressures in this decision
but move as slowly as you can. There are many
resources out there to help you. "One" such
type of agency would be your local "Crisis
Pregnancy Center". "If" you are interested
in this type of help have the mod pass word to
me & I will put you in touch with some very
loving & caring people.
To the mod- if this reply causes this topic to
rat hole please delete it and let me know why.
chet
|
455.4 | we were prepared to make the decision | MEMIT::GIUNTA | | Tue Feb 16 1993 07:47 | 24 |
| Although I did not hav to make this decision, my husband and I were
prepared for it due to having 3 eggs put back during a GIFT procedure.
I knew that if all 3 fertilized, the doctor would want to do selective
termination to get us down to 2. We discussed it and had made the
decision prior to finding out how many babies there were (we have
twins), and had decided that we would do the reduction. My reasons
were that the remaining babies would have a better chance of survival,
and after 5 years of trying, I wanted to give them the best chance
possible. I don't know if I could have gone through with it, but I
believe I would have. And, in fact, if I had had triplets, odds
are that they would not have survived given that I managed to deliver
at 28 weeks, and we almost lost our son on several occasions (he did
not come home from the hospital til he was 6 1/2 months old).
In fact, I know of people who have successfully delivered healthy
quads, but I also know of people who lost 1 or more babies due to
premature delivery and small size, with the likelihood of both of
these happening increasing with the number of babies you deliver.
It is a very personal decision. Whatever you decide, it will be the
right thing for you. If you would like to talk about it, please
feel free to call or send mail.
Cathy
|
455.5 | hugs | KAOFS::M_FETT | alias Mrs.Barney | Tue Feb 16 1993 08:58 | 10 |
| being of little experience in this area, I just wanted to
give you a little bit of support - congrats on your pregnancy and
I feel for you to have to make such a decision.
Think about all the factors (as previously stated, your emotional well
being) and perhaps get the doctors to explain what their criteria
is for selective reduction. Understanding the process may give you
the chance of making a more informed decision.
We're with you whatever you decide - let us know how you are doing!
Monica
|
455.6 | Consult a teaching hospital | WEORG::DARROW | | Tue Feb 16 1993 10:06 | 12 |
|
I would ask for a referral to one of the major teaching hospitals in
your area. If you're in Boston, Mass General and Brigham and Women's
come to mind.
When we had our amnio at Brigham's, they stressed that they have
counselling services available to help you with any decisions you
may have to make. This is what they do full-time. They are not
there to tell you what to do, but rather to help you weigh all the
information so you can make the right choice for your life, values,
and beliefs. They are certainly well-versed in the issues and problems
around multiple births.
|
455.7 | | NASZKO::DISMUKE | WANTED: New Personal Name | Tue Feb 16 1993 11:40 | 9 |
| I agree with .6! There is alot more at stake here than an elective
procedure. Get all the information and facts you possible can together
before you have to make this decision.
Also get as much detail as you can on the emotional effects this will
have as this is not just an elective procedure!
-sandy
|
455.8 | One family's decision | TNPUBS::MICOZZI | | Tue Feb 16 1993 12:17 | 26 |
| This has been a topic of discussion in my family for the past week. My
sister will be doing IVF in April and the doctor's have
talked to her and Jim about selectively eliminating all but two or three
of the embroyos. We have had several long discussions weighing the pros
and cons and they have come to a tentative decision.
If the situation presents itself, they have decided to eliminate all but
two because they want to give the two embroyos left the best shot at
developing into normal healthy babies. We have members of our family
that are both physically and mentally challenged and that really
weighed on Dawn's mind.
Another factor was money. They own a small dairy farm. They were just barely
able to scrape the money together to do the IVF procedure. The long
term medical costs that could be incured scares them both.
As for emotional effects, Dawn is so emotionally beside herself at this
point that they handled it rather well. Sounds funny doesn't it but it
will be just one more step in a process we all pray brings them a baby.
My heart goes out to you. I hope all goes well.
Donna
2. We have fa
|
455.9 | Can you donate the embryos? | NEWPRT::NEWELL_JO | Jodi Newell - Irvine CA | Tue Feb 16 1993 13:12 | 13 |
| I'm curious, what are the chances of donating one or two of the
healthy embryos to an infertile couple? If it's possible, the
fact that you're helping others may ease the pain of your decision.
The selective termination process was a decision that faced the
Frustaci couple (with the septuplets [7]). They're chosing not to
do the procedure lead to disasterous results. I know I wouldn't
want to have to make such a decision.
Good luck and strength in whatever you decide.
Peace,
Jodi-
|
455.10 | | WEORG::DARROW | | Tue Feb 16 1993 13:21 | 7 |
|
If my understanding is correct, .0 is already pregnant with 4 embryos.
She was taking fertility drugs, but this wasn't IVF, so there wasn't an
option of donating the fertilized eggs.
In a situation of IVF, I would imagine you could donate the fertilized
eggs.
|
455.11 | Contact Information | CSC32::DUBOIS | Discrimination encourages violence | Tue Feb 16 1993 17:23 | 10 |
| I have just spoken with a parent who has been faced with this decision.
He and his wife had 4 embryos also, and decided not to reduce.
All 4 children are now healthy 3 1/2 year olds.
Steven says that he has become part of a nationwide support network for
others in this situation. He said that he would rather not reply in the
notesfile, but would be happy to give information and/or support to whoever
would like to contact him through email. He can be reached at MIMS::KLAMON_S.
Carol
|
455.12 | another perspective... | ASDS::PEACOCK | Freedom is not free! | Wed Feb 17 1993 20:38 | 30 |
| I know nothing about this from a personal experience, but something
has been rattling around in my head since this note started, and I
felt I should share it. Maybe someone who has already gone through
this or does counseling in this area can tell if I'm off base or not.
While I understand the concept, and I understand that there are
non-trivial risks when there are 3 or more children being carried,
something strikes me odd. This idea of "selective reduction", I
believe, needs to be understood very, very clearly. In particular, I
have a caution to anyone dealing with this situation.
It strikes me that the long term emotional (any maybe physical as
well) affects of "selective reduction" could be just as serious as if
the mother had an abortion. Some of you (perhaps many?) will probably
think I'm taking this to an extreme, or may even think that I'm dead
wrong, but I don't believe so. In essence, when you decide to go
through the process of "selective reduction", aren't you killing off
one or more young fetuses? Isn't that what happens during an
abortion?
Please understand, I'm not in any way trying to judge people or say
that anyone who does this is wrong. All I'm saying is that during
your conversations with doctors and counselors, you might want to be
sure to understand it from the aspect of an abortion as well. A good
friend of mine had an abortion when she was much younger, and even
today her emotions on the topic run deep and strong.
Peace,
- Tom
|
455.13 | Yes, it's an emotional issue. | WEORG::DARROW | | Thu Feb 18 1993 09:34 | 20 |
|
re: .12 , Tom-
I agree that selective reduction has many of the same emotional issues
as abortion. If a person is morally opposed to abortion, I'd guess
they might be opposed to selective reduction. If a person is pro-choice,
I'd guess they'd feel it was a personal decision for the mother to make.
In either case, yes, it would be a VERY difficult decision. Keep in
mind that someone having to decide about selective reduction has
most likely been through the pain of infertility. They WANT a child.
For what it's worth, the purpose of selective reduction is to allow the
remaining fetuses a greater chance at birth, health, etc. My limited
understanding, based on a TV documentary on infertility, is that the
specialists try to choose the fetus with the least-positive position
or location. That is, based on the location of implantation, size, etc.,
they try to determine which fetus is most endangered, thus allowing
the "stronger" fetus a better chance of survival.
--Jennifer
|
455.14 | Never got that far but... | ROYALT::D_KELLEHER | | Thu Feb 18 1993 10:05 | 42 |
| When my husband and I were in counceling before IVF
treatments were to begin (before we actually began
I found out I was physically unable to procede) alot
of emphasis is put on the what ifs??? Please understand
for those of you who have never been faced with this,
it is one of those experiences you can not describe....
The whole process of infertility is full of daily risk
taking and hard decisions - decisions that couples
should never have to face - and yet we do! Because
in the end the rewards are great!! when successful and
if not then you are actually better prepared for
other alternatives.
The pain is great enough without introducing abortion
into the picture - as much as I personally am against
abortion (I also will fight for the right of ALL
women to make their own choices)! This process being
discussed is just ONE of the hard decisions a couple
AND their doctors make!!!! - the decision of selection.
The suggestion that this is a form of abortion and
that there will be a feeling of guilt later is not
fair or compassionate. Life is not easy - we all make
decisions right or wrong but they're our own!
Also, the process of reduction is done very carefully
as to not further risk the remaining embryos - this
procedure is also done in the very early stages
of pregnancy - when you go through IVF you actually
know you are pregnant within the few weeks proceding
implantation. The doctors do not wait very long -
also the decision of selective reduction by the couple
is generally talked about between couple and doctor and
agreed upon well BEFORE attempting IVF. It's probably
the most difficult decision a couple needs to make
in the IVF process and one that is extremely personal.
You have to remember - this couple is doing this
because they WANT a baby - a will try with all their
hearts and ability's to be successful. There should
NEVER be any quilt associated with their decision,
only compassion understanding and support.
|
455.15 | | TANNAY::BETTELS | Cheryl, DTN 821-4022, Management Systems Research | Thu Feb 18 1993 11:18 | 10 |
| RE: .14
I don't believe that there was any suggestion that the parents SHOULD feel
guilt about selective reduction. Just the caveat that later, emotionally,
there MIGHT be some guilt and this is something to consider in the counseling
process. No one is suggesting that the base noter is choosing an abortion,
only that someof the emotional issues may be similar and need care beyond
which fetus is most likely to survive.
ccb
|
455.16 | | NOTIME::SACKS | Gerald Sacks ZKO2-3/N30 DTN:381-2085 | Thu Feb 18 1993 13:18 | 11 |
| I think it's unusual for a well-run fertility program to end up with quads.
With IVF, extra embryos can be frozen and used in a later implantation
attempt. It's not possible to freeze eggs, but I believe that extra eggs
retrieved in a GIFT cycle could also be fertilized in vitro and likewise
used in an later IVF implantation. There's not as much control in an IUI
cycle, but prudent monitoring should keep the number of eggs down to
something reasonable.
According to a friend who's a high-risk OB, the chances of survival of
quads are dramatically lower that those of triplets.
|
455.17 | reply from basenoter | ROCK::STOLICNY | | Thu Feb 18 1993 13:31 | 44 |
|
The following is a reply from the anonymous basenoter.
Carol Stolicny, PARENTING co-mod
*******************************************************************************
Hi,
I just wanted to thank everyone for all of the responses so far, your
input has certainly helped us deal with this decision much better. It
is very generous of you to share your personal experiences and opinions
on this touchy matter. Thanks also for the numerous suggestions for
contacts for further support, I've already found some very helpful.
As far as my situation goes, I am seeing a High Risk OBY at Brigham
and Women's next week for consultation. What I plan on trying to
find out is: What criteria is used to determine the risk of a
pregnancy, specifically is my condition (age, health, fitness level,
size, etc. ) a major factor or is it more the location and size of
the embryos? I would also like to know about the added risk of having
this procedure done to the survivors? I'm aware that there is some
added risk of miscarriage, but I'd like to know how much.
The emotional side of this decision is by far the hardest. Yes,
this is an abortion, but as many responses have mentioned " We
do *WANT* children!" The most important factor for us is the health
of the survivors (if we do choose to reduce).
We are going to wait until we speak with the doctor before making
a final decison. I'll let you know what advice he gives us and what
we do decide.
If I've learned anything from this, I've learned that we should have
thought about this possiblity more at the beginning of our treatments.
Even though they told us that the chance of this happening to me was
very low (far less than 1%), we still should have seriously thought
about it.
Finally, I just wanted to clear something up. I did not have IVF,
I used Pergonal to force me to mature follicles and HCG to ovulate.
The fertilization was done the old-fashioned way :).
Thanks Again
|
455.18 | | GRANMA::MWANNEMACHER | A new day has dawned | Thu Feb 18 1993 14:57 | 7 |
| Another thought should be about the health of "the survivors". The
problem I see with ending the pregnancy of one or more of the babies is
that the survivors could turn out to have some birth defects, but the
ones eliminated could have been healthy. Sorry, to complicate things,
but it is something that came to my mind.
Mike
|
455.19 | | EOS::ARMSTRONG | | Thu Feb 18 1993 17:28 | 8 |
| When my wife and I went through years of infertility treatment,
I was always amazed at the hurtful things that people would
way to us. Its always hard to know how to deal with that.
Do you confront them? When we would, they would always deny
they MEANT to be hurtful.
It saddens me that people have to put their own agendas first
in this discussion.
|
455.20 | | GERBIL::DUPONT | | Fri Feb 19 1993 09:31 | 22 |
|
Re: .19
This is a topic that was put in this conference by the
author seeking advice. I don't think anyone is forcing
an agenda here except those who want to hush up one
particular valid point in her decision making process!
The author herself seems to recognise that abortion
analogys are part of the thought process. If she, at this
difficult time, is able to understand this then why can't
you?
In this string I have heard nothing but compassionate words
for this woman by kind caring people. I respectfully request
that you not try to turn this into a political rat hole. This
is not what this topic is about or was meant to be.
chet
|
455.21 | | GRANMA::MWANNEMACHER | Slick Willie, GO HOME!!! | Fri Feb 19 1993 14:49 | 7 |
|
RE: .20 Ditto, my reply was accused of being incompassionate. It was
not meant that way, it was something that came to mind wiht the subject
matter being discussed. Was not my intention.
Mike
|
455.22 | Tough decision | CSC32::DUBOIS | Discrimination encourages violence | Fri Feb 19 1993 18:09 | 17 |
| I don't know what I would choose under these circumstances (Shellie and
I actually did discuss this one time). However, one thing that came
to mind when reading an earlier note is that when you have quads there is
probably a higher risk of them having medical problems which are lifelong.
I would imagine (your doctor can tell you) that this is because a woman
carrying more than one fetus is less likely to be able to carry to term.
The more babies, the earlier the likely births. Thus, if you can carry the
fetuses a very long time, then they might be fine (as Steve Klamon's were),
but if you give birth too prematurely, then the babies could have severe
problems.
I don't know if I saw this here or not, but in aborting some, you have
the risk of losing them all.
It's a tough decision. Good luck.
Carol
|
455.23 | basenoter update - embryo count now 5! | TIPTOE::STOLICNY | | Wed Feb 24 1993 11:04 | 38 |
|
The following is a reply from the anonymous basenoter.
Carol Stolicny, PARENTING co-mod
*******************************************************************************
Hi,
I went for another ultrasound and a visit to the OB specialist
this week, here's what happened.
The ultrasound revealed that I have *FIVE* not four healthy
embryos! Unbelievable.
The High Risk OB and he was able to answer all of our questions.
Here's what we learned:
- The reduction is done during the 12th week (+/- a week) so that
if there is anything obviously wrong with an embryo it will be
removed.
- It is fairly simple for the mother, just like a normal abortion
done at this stage of pregnancy. I'll spare you the details.
- There is a 1% chance that this procedure will cause a miscarriage
of the entire pregnancy.
- A procedure-induced miscarriage will occur within 3 days if it
happens at all.
- He was very against keeping 4, marginally against keeping 3 and
recommended we go down to 2. At this point he was under the
impression I only had 4 embryos.
That was about it. We have 3 more weeks to decide, and we haven't
come to a conclusion yet.
|
455.24 | instant response | KAOFS::M_FETT | alias Mrs.Barney | Wed Feb 24 1993 11:50 | 8 |
| reading the note, I had to exclaim:
OHMYGOSH!
Again, my heart goes out to you, and I will be keeping you
in my thoughts and prayers.
Monica
|
455.25 | Wow! Five?! | SELL1::SWANSON | Stitch-aholic | Thu Feb 25 1993 15:07 | 9 |
| Having just had one baby in October, I can't imagine caring for 3, much
less 5! My thoughts are with you, and I wish you all the luck in the
world. Whatever you decide will be right for you. I say go for the
safest to be sure that you have your children as healthy as
possible...my baby was born a month early and it was a little scary,
although she is very healthy and weights 15 pounds now!
Jennifer
|
455.26 | Update from anon basenoter | CNTROL::STOLICNY | | Thu Apr 01 1993 15:21 | 41 |
|
The following update is being entered for the anonymous basenoter.
As mentioned at the end of the reply, if you would like to correspond
with the basenoter, I will forward mail messages to her.
Carol Stolicny, PARENTING co-mod
*******************************************************************************
Hi,
After a long, hard month of trying to make our final decision, the
day came when I would have to reduce if I were to reduce. It remained
a very difficult choice for us up until the very last day. We chose
to reduce to triplets. The procedure was performed last Friday and
everything appears to be fine for the three survivors.
The procedure itself was very easy for me (well, physically), it took
less than 15 minutes and was almost painless. The doctors decided to
try and remove the identical twins, since they have a higher chance of
causing complications to the pregnancy and having complications
themselves. The only hitch we came across was that one of the twins
was behind one of the hopeful survivors. The doctors decided to
terminate one of the twins with the hope that the other would pull out
on his/her own within a couple of days. It did and now I'm hopeful
that we may be finally able to start enjoying this pregnancy.
Once again, thanks to all who were kind enough to offer their opinion
and/or support, it really helped. The only negative input I received
was from a national organization for multiple births. The president
of the org. actually called me at home and wrote me a personal letter
with the intention of trying to persuade us to try for the quintuplets.
Her tone was extremently judgemental and she only succeeded in adding
grief to the situation. Fortunately, she was among the minority since
most people were very supportive.
If anyone would like to speak with me personally about our experience,
I'd be more than happy to oblige. You may do so by contacting the
moderator.
Thanks Again
|
455.27 | | ASDS::PEACOCK | Freedom is not free! | Thu Apr 01 1993 15:50 | 9 |
| Congratulations on getting through the decision process intact - only
you are the right folks to make the right decisions for you and your
family.
May the rest of your pregnancy be uneventful.
Peace,
- Tom
|
455.28 | keeping my fingers crossed | KAOFS::M_BARNEY | Formerly Ms.Fett | Thu Apr 01 1993 16:40 | 6 |
| I'll be waiting with fingers crossed and thumbs pressed
(they "press thumbs" in Germany) as I'm sure we all
will, waiting to hear from you.
good luck, and enjoy!
Monica
|
455.29 | Good-Luck | WECARE::STRASENBURGH | Better Days Ahead | Fri Apr 02 1993 10:02 | 9 |
| May I also say congratulations to you and your family. I will be
waiting for the news of the big day. (When is your due date anyway).
Please keep us posted on how you are doing every once in a while, I'm
sure we would all like to follow this pregnancy with you, if you don't
mind if we do.
Good luck,
Lynne
|
455.30 | Happiness & Joy to your family-to-be | ROYALT::D_KELLEHER | | Fri Apr 02 1993 10:33 | 1 |
| Start enjoying..........
|
455.31 | Update from the basenoter | CNTROL::STOLICNY | | Tue Jun 22 1993 21:40 | 50 |
|
The following update is posted at the request of the anonymous basenoter.
Speaking both for myself and on behalf of the PARENTING notesfile community,
we wish the best for this noter and her family and will keep them in our
thoughts and prayers.
Carol Stolicny, PARENTING co-mod
*******************************************************************************
Hi,
This is the basenoter.
Unfortunately, I'm able to update this note much sooner than I would
have liked. Last Saturday (the 12th) I went into premature labor and
delivered my triplets at 24 weeks. For those of you who don't know,
24 weeks is about as young as a baby could be and still survive. We
were told the chances for each baby at this gestation age is 10-15%.
Well, they all lived for a little while. Our daughter had to be
taken off life support on Sunday evening and one son on Tuesday
morning. We are left with one son who is courageously fighting for his
life at Brigham and Women's. The doctor's think he may make it ...
we are keeping our fingers crossed.
My pregnancy was going along smoothly up until that Saturday. I had
had a recent ultrasound and everybody was doing great. I felt fine
until Friday when I had a little cramping. I called the doctor and
her nurse told me not to worry about it. The next morning I started
getting very strong contractions and within 4 hours I was fully dilated
and in the delivery room having a C-section. It was too late to try
to stop labor.
I have only great things to say about all the people at Brigham and
Women. They did whatever they could to save our children and to
console us with our loss. Most importantly, they were honest and
always kept us informed no matter how terrible the prognosis.
We're both trying very hard to get over the guilt that we feel.
We can't help wondering about the 'what ifs'. What if we had decided
to reduce to twins ... would that have made a difference? What if
I went to the doctor on Friday when I had a little discomfort, would
that have made a difference? Fortunately, we have a little guy in
the NICU that is keeping us from dwelling on our misfortune ... he
needs all of our attention right now.
I sure do wish I was able to give a more positive update.
|
455.32 | I'm Overwhelmed | NEWPRT::WAHL_RO | | Tue Jun 22 1993 22:18 | 16 |
|
Reply to the basenoter.
I'm so, *so* sorry.
How difficult it must be.
All of you are in my prayers.
I wish you were here to hug.........
Rochelle
|
455.33 | | IMTDEV::COOP | Love will conquer all | Wed Jun 23 1993 01:40 | 7 |
| Dear Basenoter:
You and your family are in my thoughts and prayers.
Hang on, and God Bless..
jc
|
455.34 | you have my sympathy | DELNI::GIUNTA | | Wed Jun 23 1993 09:52 | 14 |
| Dear Basenoter,
You have my heartfelt sympathy on the loss of your children, and my
prayers for you son in the NICU.
My twins graduated from the Brigham NICU, and I can tell you
that your son will receive the best care there. If you'd like
to correspond with me about life at the Brigham NICU and some
of the risks you may encounter, please feel free. Life will
be a roller-coaster ride with your son there.
You're all in my prayers.
Cathy
|
455.35 | | KAHALA::JOHNSON_L | Leslie Ann Johnson | Wed Jun 23 1993 11:03 | 6 |
| I too offer my sympathy. I am saddened by the loss of two of your
triplets, but will pray for you & your son. Hoping to hear good
news of his progress and continued development and increasing vigor
in the future.
Leslie
|
455.36 | | MACNAS::BHARMON | KEEP GOING NO MATTER WHAT | Wed Jun 23 1993 11:11 | 10 |
| I am very sorry to read about the loss of two of your triplets. All
my thoughts, prayers and hugs for your son and you.
Bernie
Bernie
|
455.37 | the path | KAOFS::M_BARNEY | Formerly Ms.Fett | Wed Jun 23 1993 11:46 | 17 |
| Dear Basenoter,
I am adding my feelings for your family here, and as with the
others, I am very saddened by your loss.
I hope for your son, and want to tell you that you must put
aside your feelings of guilt and what-ifs. You made your decision
based on what you knew at the time. I too have been down that path
of what-if in the same way ("was there something I COULD have done")
We all do this. Don't blame yourself. You made courageous decisions.
Now you're faced with a situation that demands even more courage.
You have my deepest respect and sympathy.
Please know you are in our thoughts....
Monica
P.S. We have some discussions here about perinatal loss, perhaps
your might like to read.
|
455.38 | | SUPER::WTHOMAS | | Wed Jun 23 1993 12:23 | 6 |
|
You and your entire family are in my prayers.
Peace be with you all.
Wendy
|
455.39 | | NEWPRT::SZAFIRSKI_LO | IVF...I'm Very Fertile! | Wed Jun 23 1993 12:46 | 13 |
| I am so sorry for the loss of your two children. My thoughts and
prayers are with you and your family. May God Bless your little son
with strength and health during his stay in the NICU.
Please don't beat yourself up over the "what ifs". You did what you
felt was best and trust that those decisions were the right ones.
We are all here for you and know that much love and support during
this hard time is right here at your fingertips.
Take care and a Big Hug for you and your family.
..Lori
|
455.40 | | CSC32::S_MAUFE | this space for rent | Wed Jun 23 1993 13:12 | 5 |
|
a Big Hug from the Maufe's. Enjoy your son, and watch in amazement as
he gets big and strong and runs you ragged.
Simon
|
455.41 | | CSC32::DUBOIS | Discrimination encourages violence | Wed Jun 23 1993 16:07 | 4 |
| I am so terribly sorry about the loss of two of your children. I hope your
surviving son lives and grows and thrives. I am praying for you all.
Carol
|
455.42 | what more is there to say? | NEWPRT::NEWELL_JO | Don't wind your toys too tight | Wed Jun 23 1993 16:09 | 4 |
| Tears and Hope
Jodi-
|
455.43 | | SALES::LTRIPP | | Wed Jun 23 1993 17:39 | 8 |
| I want to add my thoughts and prayers to the others. Above all do not
let the "what ifs" get you down, that will drive you crazy, that comes
from some from someone who still let's it get to me frequently.
A NICU is a busy, and sometimes scarey place, just be sure you take
some time to devote to you alone. I will pray for your son.
Lyn
|
455.44 | | SUMA::KUHN | | Thu Jun 24 1993 11:06 | 11 |
| My sincerest sympathies at the loss of your two little
ones (I can't stand up right now I'm so upset). My
prayers are with you.
Courage and strength are your saviour when it comes to
helping your son to grow and thrive. My experience with
B&W's is only positive and your son is under super care.
Keep your thoughts on him, don't let your minds get bogged
down with 'what ifs'.
Marji.
|
455.45 | Sending hope and love to you and your family..... | ROYALT::D_KELLEHER | | Fri Jun 25 1993 17:34 | 11 |
| Loss is hard enough without beating yourself up with
"what-ifs" - you have a tiny son who needs all of
you right now - so lift up your heart and go on.......
The Kelleher family sends our sorrow for your loss
and celebration for the tiny life that is at B&W, they
are wonderful - please feel better that he is in the
best hands possible.
John and Donna
|
455.46 | | MCIS5::WOOLNER | Your dinner is in the supermarket | Mon Jun 28 1993 13:35 | 6 |
| Please add my heartfelt sympathies at the loss of your two. I'll be
praying for your son (sending healing energy). Take care of *you*,
too, and as everyone says, that includes trying not to beat yourself up
with "what ifs".
Leslie
|
455.47 | any progress report ? | DELNI::GIUNTA | | Wed Jul 07 1993 13:29 | 23 |
| Any update on the progress of your son? I was just thinking of him this
morning as I was digging through the photo album and came across some
pictures that were taken of my son in the Brigham NICU when he was 5 days
old. They used him as one of the babies in the slides they use to train
some of the NICU staff, so the pictures show all the latest and greatest
medical technology in action.
I hope things are progressing well, and that this roller-coaster ride is
fairly smooth for you. Please keep us posted on his progress, as I have
found this file to be very informative and supportive, and it will make
a nice sounding board for you if you have questions on what the doctors
are doing or just need to vent.
And remember, you're the mother, so don't be intimidated by medical personnel
or information. Keep asking questions and making your opinions known.
Although it may be tough to believe, you do know your son better than they
do, and you are his best advocate. I didn't believe that about me til the
point got driven home during one of Brad's episodes, and we were able to
catch something before all that monitoring equipment.
My prayers are with you.
Cathy
|
455.48 | | CNTROL::JENNISON | John 3:16 - Your life depends on it! | Wed Jul 07 1993 13:53 | 10 |
|
Yes, please do update us if you can find the time.
By the way, Brigham and Women's was just ranked among the
top 10 best hospitals in the country.
Mass. General was also in the top 10, and Johns Hopkins was
ranked number 1.
Karen
|
455.49 | An update | NYUK::DIFONZO | | Fri Jul 09 1993 11:09 | 38 |
| Hi,
This is the basenoter and I've decided to end my anonymity. I would
like to thank everyone for their support ... believe me, it helps!
A few of you asked for an update, so here goes:
Michael, our son, is still hanging in there. He has had the normal
ups and downs that most premies have, but overall he is progressing
fairly well. His heart and head are normal which is a huge plus
at this point. As to be expected his lungs have been his biggest
problem so far. They are still of concern but he seems to be making
some progress. He was able to transition to my breast milk without
a problem and continues to be fed additional calories. His weight
bottomed out at 1 pound 3 ounces but he's almost back to his birth
weight of 1 pound 8 ounces. The only other major setback was a
yeast infection which presented itself as a severe rash all over his
upper body. These type of infections (fungal) can be life threatening
to a small baby if they manifest into the blood. Fortunately the
doctors caught it early enough on Michael and it never progressed
into his system. The next milestones are to take him off of the
ventilator and for him to grow.
With so many unknowns left in this journey, the one thing
that I can be sure of is that he is in the best hands possible. It is
easy to see the genuine passion the NICU staff have for their work.
The NICU can be a very intimidating place at times, but the staff
do a remarkable job to appease those feelings. They all seem to be
able to sense when you're worried or frightened, and do their
best to address your concerns. We also appreciate that the medical
staff have always kept us well informed, regardless whether it is
good or bad news. It makes it so much easier to concentrate on other
things while we're away from him.
Thanks Again for the advice and support.
Nancy
|
455.50 | | CSC32::DUBOIS | Discrimination encourages violence | Fri Jul 09 1993 12:07 | 8 |
| Thank you so much for the update, Nancy. I remember well the NICU's at
the hospitals we were at, and all of the tiny babies struggling there.
I also remember all too well how I felt when Justin was in the NICU and
how little he could do that was "normal" - like eat.
I pray for all of you, and wish your son all of life's best.
Carol
|
455.51 | | CNTROL::JENNISON | John 3:16 - Your life depends on it! | Mon Jul 12 1993 10:00 | 6 |
|
Thank you, Nancy.
I will be praying for Michael, you ,and your husband.
Karen
|
455.52 | Prayers | MACNAS::BHARMON | KEEP GOING NO MATTER WHAT | Mon Jul 12 1993 10:57 | 6 |
| Nancy,
All my prayers and hugs for Michael, you and your husband.
Bernie
|
455.53 | Any Updates! | MACNAS::BHARMON | September 17th, 1993 | Wed Aug 25 1993 10:54 | 12 |
| Nancy,
Any updates on the progress of Michael. I do hope and pray he is
doing well.
Bernie
|
455.54 | Update on Michael | NYUK::DIFONZO | | Wed Aug 25 1993 14:31 | 19 |
| Hi,
Michael is doing very well, Thanks for asking. Yesterday was
a milestone of sorts since the ventilator support was removed and
he is now breathing on his own! He is hovering around 3 pounds
and is starting to resemble a smaller version of a chubby, healthy
baby. His behavior is showing baby-like signs. He sucks his thumb
and pacifier, gets mad when he's having his diaper changed and grabs
everything within his reach.
His only major setback to date was a nasty yeast infection which took
a long time to clear up. The medication was fairly strong and
delayed both his lung development and his overall growth.
However, as soon as he was off of it he improved rapidly.
We hope to get him home some time in the fall, but we'll let
him decide when he is good and ready!
Nancy
|
455.55 | wonderful! | KAOFS::M_BARNEY | Dance with a Moonlit Knight | Wed Aug 25 1993 14:47 | 3 |
| Such great news made my day, Nancy!
Monica
|
455.56 | I have a "Michael" too | IVOS02::NEWELL_JO | Jodi Newell - Irvine, CA. | Wed Aug 25 1993 14:49 | 3 |
| Wonderful!
Jodi-
|
455.57 | | MACNAS::BHARMON | September 17th, 1993 | Thu Aug 26 1993 07:22 | 7 |
| Nancy,
Brilliant news.
Bernie
|
455.58 | Good for Michael! | GVA05::BETTELS | Cheryl, DTN 821-4022, Management Systems Research | Thu Aug 26 1993 08:11 | 10 |
| Great news.
It also seems that Angela, the little siamese twin who shared a heart
and liver with her sister (who didn't survive the separation operation)
is doing better too. Medical miracles!
Glad to hear Michael is doing well. I had a little "peanut" too for
the first year of his life.
Cheryl
|
455.59 | | CSC32::DUBOIS | Discrimination encourages violence | Fri Aug 27 1993 20:37 | 4 |
| Thanks for the update, Nancy. We were just talking about your son the
other night. :-)
Carol
|
455.60 | excellent news! | DELNI::GIUNTA | | Mon Aug 30 1993 11:57 | 5 |
| That's great news! My husband and I were just wondering about Michael the
other night. Getting off that ventilator is such a good milestone, and up
to 3 pounds is just great! Keep us posted on how things are going.
Cathy
|
455.61 | Update on Michael | NYUK::DIFONZO | | Tue Nov 23 1993 10:28 | 45 |
| Hi,
I thought it was about time to update Michael's progress.
Michael came home on October 8, just 1 week after his due date. He
was 5 pounds 7 1/2 ounces, 17 inches. After only 4 weeks he was
up to 7 pounds, 9 ounces, 18 1/2 inches. He came home without any
equipment or medicine! So far, the only complications that he has
that are related to his prematurity are, a few scars on his torso
from a yeast infection, minor damage to his eyesight which can
be corrected with glasses, and, of course, some scar tissue in his
lungs which should lessen (and maybe even disappear) over the next
couple of years.
He continued to do well until last Friday when he resumed his flare
for the dramatic. He'd been a little bit more tired than usual and
I was starting to think he was coming down with something. While
having his diaper changed the little bugger opened his mouth to start
to cry but nothing came out. He had stopped breathing. I shook him
a little bit but to no avail. I yelled for my husband to call an
ambulance and I started to administer infant CPR. With each breath
I gave him some milk/mucus came up. His color was starting to come
back (from the scariest shade of blue I've ever seen) when the EMT's
arrived. They whisked him off to the ambulance outside and continued
CPR until the paramedics got there. After a little bit of work they
removed a huge piece of mucus from his lungs and proceeded to intubate
him to help him breath. Following a quick stop at St. John's hospital
he was transported to the intensive care unit at Children's Hospital.
He is doing great and will probably be discharged tommorrow! Obviously,
I can't wait until he comes home but I'm extremely concerned about
a repeat performance. I don't even want to think about how lucky we
were that this happened to Michael in front of our eyes, instead of
while he had been sleeping. The doctor's can only say that he
probably was getting a cold and that his lungs got very congested
and it was too hard for him to breath. He didn't have a fever, or
runny nose and was eating well. How do I prevent this from happening
again without watching him like a hawk 24 hours a day? We were told
that he is getting too large and strong for a monitor, so we're
becoming frustrated trying to find a good solution to this problem.
Then again, maybe I shouldn't worry about him at all. I'm becoming
convinced that he has a guardian Angel following him around :)
Nancy
|
455.62 | | STROKR::dehahn | ninety eight...don't be late | Tue Nov 23 1993 14:08 | 7 |
|
WOW, I'd say he has a flair for the dramatic, and you have grace under
pressure. Good work, Nancy.
Chris
|
455.63 | Babies turning blue... | CSC32::DUBOIS | Discrimination encourages violence | Wed Nov 24 1993 13:54 | 12 |
| Geez, Nancy! I understand your fears. (13 month old) Justin stopped breathing
and went into convulsions just a few weeks ago, and we ended up doing
the ambulance trip, too. Justin seems fine now, didn't even have to spend
the night, but I worry. Our pediatrician said it would probably happen again.
Every time he hurts himself now (which is how that started) I am terrified that
if I don't calm him *immediately* he'll stop breathing and go into convulsions
again. I know the shade of blue you are talking about. I've experienced it.
I'm glad Michael is doing better. I hope none of you ever have to go through
this again, because he will be *so* healthy!
Carol
|
455.64 | | DV780::DORO | Donna Quixote | Mon Nov 29 1993 19:30 | 7 |
|
for the last few..... isn't there an apnea monitor/breathing monitor
you can put on or near the baby? I had a friend with similar probl;ems
a few years back and he described something like the above.
Hugs to both of you!
Jamd
|