Hi everyone..new here!

A place for those bereaved to receive and offer support

Hi everyone..new here!

Postby lisa k » Wed Mar 24, 2004 07:56 pm

Hi! My name is Lisa, I'm 28, married and live in Illinois. I lost my first baby, a boy, in September 2003 due to severe preeclampsia. I was at 22 wks and I was approaching seizures and possibly a stroke. I was told I had to make a choice.[V] I will carry guilt for that the rest of my life. The doctors told me the baby was already showing signs of trauma at that point. I don't really understand why this happened to me. Hubby and I would like to try again but I'm so so scared. I've been told I have a 60-65% chance of developing it again. I don't know if I'm doing the right thing by trying again but I feel I should atleast give it one more chance. I've read a little on here about what my chances are. I'd love to hear some success stories if anyone has any...It would sure bring my hopes up a little.

Lost Jeremy Jason to preeclampsia 9/15/04

Lisa
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Re : Hi everyone..new here!

Postby julie f » Wed Mar 24, 2004 10:02 pm

Lisa,

I am so sorry for your loss. I too lost my first, and only, due to preeclampsia in July of 2003, he was delivered at 26 weeks and lived for five days.

I can understand what you mean about feeling guilty but you must know that there was nothing you could have done differently to prevent this. It is a painful thing to know that your baby was delivered so that you might live, that is unfortunately the reality for many of us here. Had they not delivered, your husband could have very likely lost his wife and his son. I am so sorry that you ever even had to be put in that position. A huge part of my guilt comes from the fact that we had to make the decision to take our son off life support. I know that we made the right decision but I will carry that burden forever. I will tell you though that as time has passed I have much more peace and less guilt. I loved my son more than anything God has ever given me and I have to believe that Zach knows that, just like your Jeremy does.

There are a couple things that really helped us in our journey to TTC again. Fist was meeting with different high-risk OBs to discuss what happened, what might happen again and how we will manage the next pregnancy. I was also tested for numerous predispositions to preeclampsia. Second was to learn as much as I could about this disease so that I really felt comfortable being a participant in my care next time. If I develop preeclampsia again, I will know what the doctors are talking about next time when they refer to my 24 houor urine catch, my liver enzymes, my reflexes, etc. I really knew little about preeclampsia until the day I was diagnosed. Third and most importantly, I found this Foundation - a great place for information and support. A place where I could help make a difference and be a part of working towards awareness, prevention and cure. It has helped me greatly in that I feel like I can honor my son's life, it has also provided me with a support system that I feel so lucky to be a part of.

There are many success stories on this board that give me hope everyday.

You and your husband are in my prayers.

Julie (27)
Zachary James, 7/22/03-7/27/03, born at 26wks - severe pe

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Re : Hi everyone..new here!

Postby angelkat » Thu Mar 25, 2004 04:49 am

Hi Lisa...

So sorry to have to welcome you to this forum. I also know the what it is like to loose a baby. Our little girl was born at 25 weeks and lived for 3 1.2 months. I am also in Ill(near the st. Louis side).

We are currently 16 weeks preg with our 2nd child together and praying very hard each and every day PE stays away.

Good luck toy ou...


Hugs
~T

Mommy to
Drew(13)
Ky (11)
~i~ Katlyne(12/9/02-04/02/03) and little bud (Due 09/11/04)http://www.forevernetwork.com/Archive/lifestory.cfm?Archive_ID=10971&Directory=%2FArchives%2FMountHope&CFID=1089289&CFTOKEN=79068509
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Re : Hi everyone..new here!

Postby josiah1112 » Thu Mar 25, 2004 07:24 am

Hi Lisa

Welcome. I'm glad you found us. I'm sorry about the
loss of your little boy. I also lost my son to pre e.
He was born at 26 weeks. I did not develop HELLP but
we were told that if I did not get delivered at that point
my son would most likely die in the womb and be stillborn.
I felt so horrible that my womb had become such an
unfriendly environment for my baby. My son fought the
good fight for 22 days and then passed.
I know what you mean about being scared to try again.
We are living proof of what can go wrong in a pregnancy.
Educating yourself about this disease and getting in a
better physical condition will help you if and when you
decide to try again. I visited a nutritionist and have
been learning so much about how to eat better and what I should be and should not be eating. Our physical condition I believe
will definitely help our bodies if and when we decide to
get pregnant again. Do you have a good OB? You would also
need to be followed by a high risk OB. One that you feel
comfortable with. You would also need to inquire about the plan of
action he will have for you in case you develop this dreadful
disease again.

Take Care of Yourself,

Gloria mom to Josiah 11/12/03 - 12/4/03 @ 26wks pre e

PS Julie- Please do not feel guilty about having to take
your baby off life support. We also had to make this dread-
ful decision. My husband and I thought about it and we asked our-
selves- What Would Jesus Do??? We thought and thought and obtained
spiritual guidance and we became more and more convinced that Jesus
would choose the way of LOVE. My poor baby was deteriorating
more and more..he was swollen and getting more swollen. We
could not stand to see him suffer any more. We were actually
relieved when he was taken off. It was as if we were freeing
him. It's very sad. I don't wish this upon anybody...
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Re : Hi everyone..new here!

Postby lisa k » Thu Mar 25, 2004 08:36 am

Thanks for sharing your stories with me ladies.. I have a high risk dr at this time and have been told when I think I am pregnant again to contact them and we will go from there. I did talk to him after losing Jeremy but alot of the information is so confusing that I have a hard time understanding and remembering it all. I guess at this point I'm overwhelmed and don't really know what to do before we decide to start trying again. Should I call my high risk dr and ask to go over things with him again? Sometimes I don't even know what questions to ask...its all so overwhelming! Thank you all for your support and this wonderful forum!
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Re : Hi everyone..new here!

Postby lgw » Thu Mar 25, 2004 10:15 am

Lisa:
I'm sorry for your loss. I lost my first baby, a son, in Nov. 2003 due to pre-e. I was also 22 wks. It has been very difficult as you well know, and as time passes, I get more nervous about the idea of trying again. This forum and the info I've learned here have helped me get over the “overwhelming” feeling you mentioned. Drs., try as they do, have a hard time dumbing the info down so that we lay people can understand. I have spent hours reading the info. on this forum and the frequent posters have served as interpreters of sort for me. They are very knowledgeable about pre-e, and stories of “successful pregnancies” (that’s a relative term, I know) are comforting. I’ve had the litany of tests that are associated with early onset pre-e, and they all came back normal. I’ve been cleared to try again in a couple of months if we so choose, but that green flag has hardly given me a warm fuzzy feeling I was hoping for. I was given the same odds as you with respect to developing it again. The odds are against us, and it is very scary, but if I don’t try again, I’ll always wonder ‘what if?’.

lgw
22w- p.e. 11-18-03
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Re : Hi everyone..new here!

Postby josiah1112 » Thu Mar 25, 2004 10:22 am

Hi Lisa,

Did you ask this high risk doctor how he would manage your
care the next time? Are you satisfied with his care?
Perhaps you would like to consult other peri's? I for
one have a very good idea of how I would want to have
a potential future pregnancy managed if I developed pre e. I therefore think it is important to find a doctor who practices
what you believe in. For example, if my pressure started
to go up, I would want to be put on hypertensive medication.
- Some doctors do not believe in this, but I have already
gone through a pregnancy without the med's and it did not
get me a good outcome. So..education for you is key, only
then will you be able to ask the right questions. When
I went for my consult, all that I was told was that I
had a risk of pre e because I had it before. I was also
told that I may not get it. The point is, if I hadn't
found this forum and hadn't researched more about Pre e,
I wouldn't know what to ask or look for in a future
potential doctor.



Gloria mom to Josiah 11/12/03- 12/4/03 @ 26wks pre e
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Re : Hi everyone..new here!

Postby lisa k » Thu Mar 25, 2004 10:33 am

Thank you for all your info! I am thinking about making an appt with my h.r. dr. and asking him what he would do if something were to happen...Its not that he's not doing his job, I think more of it is I just don't know what to ask. After reading posts on these boards, I know a little bit more of what to inquire about. Thank you so much![;)]
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Re : Hi everyone..new here!

Postby amillhouse » Thu Mar 25, 2004 01:49 pm

Hi, Lisa:
Like everyone else I am extremely sorry for your loss - but know that you found a place where people can relate to you and really understand when you need to vent or whatever. I lost my beautiful firstborn son five weeks ago to pre-e. Before that I stayed in the hospital 4.5 weeks trying to give him a chance to grow. By then his growth was already too restricted though he was perfectly formed. He was born at 28 weeks and lived for one month. In the end, Isaiah made the decision to get off the life support as his heart slowed to a stop over a course of a day.

I am an American living in South Africa and there are no high risks or peris directly around me. Fortunately - and I didn't even know this beforehand - my gynie specialised in PIH and pre-e. Since everything, this Forum has helped tremendously and I have taken the initiative to contact the experts in the country and in the States by e-mail. All of them have either called or e-mailed me back. I love the e-mails because then I have everything in writing. If you have the opportunity to get things written down (maybe have someone take notes at your appt. - your spouse or sibling/close friend) and then that will give you time to digest everything. I just want to share with you the advice I got by e-mail. This doctor is about 400 miles from me, so he wants me to get various tests done and send him the results.

My condolences on your pregnancy loss.From the obstetric history you provide you are certainly at risk for developing pregnancy complications again . I would like to suggest the following : -

1) certainly loose weight gradually so that you are in the weight range for your height

2) because your proteinuria was the dominant feature during the developement of the pre- eclampsia , get you renal function tests re- checked 12 weeks after your delivery. this will exclude any underlying renal disease

3) all being well , i suggest that you attempt another pregnancy in about 9 - 12 months

4) make sure you visit an ostetrician between 8 and 12 weeks pregnancy and probably stsrt on low dose aspirin 75 mgms until the 34 th week of pregnancy or vit e from this period . also ensure your blood pressure is under control before you embark on pregnancy.


Anika (32, severe pre-e)
Mommy's Angel Boy: Isaiah (1/20/04 - 2/17/04)
Born at 28 weeks 1 day gestation weighing 610 grams
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Re : Hi everyone..new here!

Postby for faith » Thu Mar 25, 2004 02:50 pm

Hi Lisa - I am so sorry for your loss. I lost my daughter in January, she was born at 30 weeks due to pre-eclampsia. She lived for 25 days, when we chose to take her off life supports and let her pass in our arms. All the time in the NICU I felt tremendous guilt about having her so early. I thought, what if I had rested more, what if something was done earlier. I couldn't believe my body had done this to my baby. I am very scared to try again, knowing it could happen again. As others have said I am going to be the most informed and be my own advocate. Probably put myself on bedrest with any sign of trouble. I will the best for you and your husband. This forum has lots of great info to provide.

Jill
mommy to:
Tyler - almost 4 (36 weeks, PIH)
Angel baby - 1/20/03 (11 weeks)
Faith Kristine - 1/5/04-1/30/04 (30 weeks due to severe preeclampsia, passed due to NEC (intestinal premie complication) & Sepsis)
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