Question from Amanda

Are you pregnant again after having preeclampsia once already in a previous pregnancy? Post your thoughts/concerns here - there are others who share your feelings. This is also the home of our Bedrest Buddies Support group.
deerhart
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Re : Question from Amanda

Postby deerhart » Mon Apr 19, 2004 10:20 pm

I will add one thing, if the you think that just because you make it to 37 weeks means your baby is out of risk of being in the NICU its not true. We came EXTREMELY close to having Alex in the NICU for a variety of reasons, but the biggest being just how sick I really was and how much it affected him.
He couldn't hold either his body temp or his blood sugar levels, and he was pretty close to being unresponsive at times because (I can only guess) of the exposure to all the drugs (pitocin, stadal, epi, mag sulfate etc..) and basically having (in the nurses terms) a tramatic birth.
I will never forget the first time they brought Alex back to me (almost 12 hours after he was born, I got to see him for a total of 15 minutes in the first half day of his life as they wouldn't realease him from the nursery and of course I was bedridden and coudln't go down there) his poor feet where black from getting pricked all the time to check his blood sugar levels.
In comparision, when Mason was born he was taking directly to the special care unit, but since I wasn't bedridden I was free to see him as often as I liked, he had little to no problems with his body temp (and being over a 1lb heavier then his big bro at birth helped, even though he was almost a week and a half to 2 weeks earlier), no blood sugar problems, just a little weak on the lungs. I also didn't have to wait 4 days to hear him cry.

For me, pushing for earlier intervention made the experience a lot better in that I actually got to spend time with the baby, my recovery was better and easier.

Erin



Moderator - First Time Moms, Parents of Preemies
Missouri State Coordinator
Mommy to Alex and Mason

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catherine
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Re : Question from Amanda

Postby catherine » Mon Apr 19, 2004 02:24 pm

Amanda,

Hugs honey, I know that you feel like you are sitting on a razorblade.

I think that what is happening is that you are sort of stuck in no-man's-land. If you were home or out of reach, if you were to show up out of the blue with even a mild change, because they wouldn't know what had been going on, even the day before, they might be more agressive about delivering little Maija. However, you are right in their viewing zone and they have loads of data. So they will feel much safer about how things are with you, and therefore have more room to manoever. I know that they have reeled off a list of conditions that would force them to deliver you before 37 weeks. That is because, they know that they cannot guarantee a smooth outcome for her before then with no NICU time etc. At the same time, you have a very cautious OB and a peri who would probably deliver you if they thought that "you weren't looking good". By that I mean that the list that they have given you is very objective, but years of training have hopefully put them in the position of being able to make subjective decisions too. I know that you don't want the mag or to be sick, and that having Maija healthy and here is paramount. I don't think that you are being selfish, but you must be aware that your perspective is different from that of your doctors' and theirs' isn't likely to change. While they can see you there and on the monitor etc. in the hospital, she is as safe as anyone can make her and in the best possible place to grow. I really don't think that they would let you get severely ill before they would deliver your baby but I do think that they want you to get closer to the edge in order to give her as much time in utero as possible.

Once again, if all that has gone before for you wasn't enough, this proves how sucky preeclampsia is [xx(]. I thinkt that you've done really well so far, it's only a little bit more...... Congratulations on having an excellent DH... I doubt that mine would ever have dared to find his way to this site.

Catherine
Mom to Finn, Lucy (preeclampsia and HELLP) and Chloe.
Moderator HELLP Syndrome Survivors

laura
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Re : Question from Amanda

Postby laura » Mon Apr 19, 2004 12:22 am

Amanda, I don't know what to say about the delivery criteria- on one hand, I can definitely understand it- chances are Maija will do just fine until you start showing signs of severe disease, but on the other, I can understand your desire to make sure she's safe.

The thing that is really concerning me is taking those pressures lying down. Tim, could you please print out this thread from our experts on how blood pressure should be taken? My worry is that those blood pressures they're using to decide when to deliver aren't reliable.

If you show them the info from the medical board, and they still take your pressures lying down- insist that each and every time they decline- to note, with their name and title, that patient has requested having blood pressure taken sitting up that they declined.

I wish you could find another opinion- but being inpatient sort of puts a damper on that, huh? Perhaps you could find another name from the http://www.nasshp.org site to come in and do a second opinion? Maybe you could release your medical records to another doc to review? I'm definitely thinking about you, honey.

http://www.preeclampsia.org/forum/viewtopic.php?t=321

Laura
Moderator/AK Coordinator

Mom to Alicia (severe PE) 5/98 and Camille (htn, oligo) 4/03
http://www.babiesonline.com/babies/c/camilleandallie/

jolynn191978
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Re : Question from Amanda

Postby jolynn191978 » Mon Apr 19, 2004 11:42 am

Iam new to this forum but I can sympathize. My doctor was the opposite and freaked me out with my first child. She put me on the steroids and set delivery for 35 weeks even though my Bp's were only 140/85 and protein at +2. I was on constant tests and even though the all were normal (amionic fluid, stress, etc.) she still induced me at 35 weeks. And I was on mag. I was too naive to question her and it was only an act of God that my daughter came out healthy so early. Listen to your doctor, but follow what you KNOW to be right. And keep that baby in as long as possible. Good luck!!!

Jolynn Forman
Logan, Utah
Kyri Ann--01/07/03 @35 weeks PE
New baby--due 11/25/04

megansmom
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Re : Question from Amanda

Postby megansmom » Mon Apr 19, 2004 11:30 am

Hi Amanda and Tim!

I am glad to hear that you are still hanging in there. However I am sorry to hear that the doctors aren't listening to you and your wishes. I experienced firsthand how your OB can be "dismissive". I think you need to listen to your body and what it is telling you. I also believe that doctors are pretty smart. They have, or at least should have, the medical knowledge. As far as your BP goes, your true reading may be while lying down. I know you want it to be low, but since you are lying down all of the time now, that may be the reading you should go by. Of course, that is just my opinion. I am in no way a medical doctor. And again you know your body best.

I don't know much about the criteria for delivery. With Megan, they just said we are going to deliver and get her here safely, and I said okay. I do know that Megan was born at 34 weeks and she did okay. Those 12 days in the NICU were excrutiating, but we made it through. Her lungs were not developed (i did not get the steroid shot), and she had a hard time learning how to eat. I understand the fear you must have considering the loss of Aidan, but I do think the longer you can hang in there the better off Maija will be. I know you are not putting your own health before Miaja's. I know you will do whatever it takes to get her here healthy! I know she is your number one concern!

As far as not being happy with your doctors... I say go with your gut. If they are not making you comfortable, find a new one. It is not too late to do that. Oh how I wish I had followed this advice when I had Megan. I did not have a good experience with my doctor (as you know from our visit), and I wish I had spoken up and gotten a doctor that I could speak favorably of. I have a happy ending, but the experience was stressful and not a time I like to look back on. How unfortunate. Added stress is definitely not something you need right now, so PLEASE don't let your doctor do that to you. IF YOU ARE UNHAPPY, SWITCH!!!! I just cannot express that enough. As I said before you know yourself best, don't forget to listen to what your body is telling you! Then kick and scream and throw a big fit until someone listens.

I am always thinking of you, Tim, and Maija. You are continually in my prayers. Thanks for keeping us updated. Hang in there!




Amanda, SAHM to Megan born at 34 weeks due to pe

akemt
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Re : Question from Amanda

Postby akemt » Mon Apr 19, 2004 10:20 am

Amanda,

I'm not quite sure how to answer this. I agree completely with what Erin has said - Find a doctor whose criteria and treatment makes you comfortable.

And, with my experience with Oligo in my last pregnancy, I totally understand the desire to have a baby be in the NICU rather than carry them closer to term because of the fear of what can happen inutero. I'm sure having lost a child like you have only worsens that fear. I know how hard it is to feel that while the NICU experience can be very difficult, that the baby would honestly be safer there while everyone tells you exactly the opposite. Luckily, things worked out for us and I was able to get closer to term but I was also very traumatized by the constant fear of losing my daughter. I honestly don't know if I would be able to handle going through another 8 weeks of that this pregnancy and pray that the Oligo passes me by.

Other than agreeing that if you aren't comfortable with the care you are receiving/will receive that you should find new doctors, I don't know what to say. I'm sorry you have to go through this! OH...and if you want them to take a BP sitting up, you can make them do that by being insistant. You just can't make the doctor make decisions by that BP...that's where a new dr would come in. Please keep us posted as to how you are doing and what is going on.

Catherine (22), Moderator (pregnant again)
DH Britton (27)
Emma Margaret (03/02/03) 37 weeks from PIH & oligo
Baby #2 due August 11, 2004

paljane8
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Re : Question from Amanda

Postby paljane8 » Sun Apr 18, 2004 09:17 pm

The good news is that you are at the hospital. They can monitor you and Maija closely. (You are still at the hospital, right? I have been out of town) It sounds like they are watching you closely and for now it is better for baby inutero. I know it is SO stressful for you and Tim! The baby has a better chance for lung developement because of the steroid shots and that is good. But, lungs are not the only thing developing and that is why they try and hold off as long as they can. The thing is that is you do start progressing there is a lot they can do to help you and the baby. Hang in there, you guys! I am so sorry you have to go through this. You are both doing what is best for this baby by being cautious, asking questions, following up on your care and having faith and hope.

Nancy Eastwood
Moderator/WA State Co-Coordinator

Calvin-8yrs
Saren-7yrs
Scott-4yrs (PE)
Janie-5/03 (PIH, oligo and low blood flow)
http://www.babiesonline.com/babies/4/4lbs/

deerhart
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Re : Question from Amanda

Postby deerhart » Sun Apr 18, 2004 09:02 pm

My doctors criteria where much less stringent then your doctors, BUT I want to remind you of something.

YOUR IN CHARGE, if you want to avoid mag and you don't want to allow yourself to get seriously sick, then express exactly that to you doctor and then let the doctor decide if they want to be in charge of your care. If they can't accept what you want, then find you just have to find a doctor who will.

It is IMO unacceptable for a doctor to tell you that he is going to allow you to get very very sick and won't do a darn thing about it unless you meet their criteria. Quite frankly when it comes down to it the only say the doctor has is if they will take care of you the way you want to be taken care of or not. As my doctor informed me (and as hard as it hurts to hear) you are your doctors first patient, the baby is second and it can be questionable how much good is done for the baby if you are that sick. If they have to put you on mag, they probably should deliver.

As for the criteria, my docs criteria for delivery was BP of 140/100 + for 24+ hours, 140/105 for 6+ hours, and any 1 time reading of 140/110 would be immediate delivery, no matter how far along I was. Also she would delivery immediately at any sign of my labs starting to come back abnormal or if the NST's did not come back normal, no matter how far along I was. In fact with my second child we did just what you are wanting to be done, we delivered right when it started to get bad (1 weeks of headaches with 2 high readings 120/98 and 130/90) just to avoid the mag and to have a more pleasent delivery for me.

The doctors do not know at what criteria you will have serious damage done to your organs, or at what criteria your body needs to suddenly have a seizure, or what what criteria things have gone to far that they can't be overcome. With a BP of 140/110 for over 6+ hours ... even hearing that makes me nervous.

If you can't tell (hehe) I feel very strongly that your doctor should work with you in such that you can have the type of experience you want to have even with the complications. My first pregnancy the only thing I wanted was a healthy baby and to avoid a c-section, which my doctor worked with with included pushing me as far as possible, but my second delivery I wanted to avoid the mag and wanted a better delivery experience, which she also worked with.

GL
Erin

Moderator - First Time Moms, Parents of Preemies
Missouri State Coordinator
Mommy to Alex and Mason

lauras
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Re : Question from Amanda

Postby lauras » Sun Apr 18, 2004 04:00 pm

I am so sorry about the emotional roller coaster you must be on.

When I was hospitalized with Isabella, my blood pressure was always checked while laying down. On hospital bedrest, that was all that I was doing anyway. I had BP's sustained above 160/100 with daily highs of 180/110, protein at 10 grams and THE HEADACHE. Still he waited as many days as he could to give Isabella a chance to "cook" a little longer. The criteria your doctors have set are lower than mine were so that doesn't really seem unreasonable to me but I have never been in your situation. I wish you all the best ....

Laura 32
DH 32
Isabella 11/25/01 - 30 wks -severe pe
Another girl! 8/24/04

3preemiekidz
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Re : Question from Amanda

Postby 3preemiekidz » Sun Apr 18, 2004 01:46 pm

Amanda,
I've been put in the hospital with all of my pregnancies and they always took my pressures lying down. The thought is that if bedrest or lying down is working, then I should stay that way to buy more time. I think the criteria is pretty resonable. Having had 3 babies all early, I can tell you it's not a picnic having a baby in the NICU. With my last baby I wanted out of bed so bad and thought that it would just be better for both of us if she came early. I was so wrong. My 29 weeker did remarkably well but my 31 weeker did not. She had multiple complications from being too early despite having had the steroid shots. The baby really is better in, than out, at this point. If for some reason the baby begins to show stress, then they can deliver you but until then, just try to hang on. You should be having non-stress tests at this point. If not, ask for them. I was having them twice a week where they checked amniotic fluid, heartrate, etc. and we were able to know for sure that all was ok. You're doing the right thing. I know it's hard when you've been stuck in bed for so long and feel like your life is on hold but you really do forget all the bedrest when the baby is here. It's so worth it.

Rebecca
Mom to Audri 4,
Ezra 2 1/2,
Liya 1
and #4 EDD 8/1/04
born at 35, 29 and 31 weeks due to Pre-e/HELLP


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