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Question from Amanda

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Question from Amanda

Postby amandab » Sun Apr 18, 2004 12:57 am

by amandab (166 Posts), Sun Apr 18, 2004 12:57 am

Hi ladies!

Thank you so much for all your thoughts and prayers and the cards and visits! You all mean so much to me. I can't imagine making it through this without you.

I am doing well physically. BP is usually really low. Sometimes it works up to 140's/80's, and I had one really bad day where it got up to 180/106, but it always goes back down. Protein has been negative to trace on the dipstick. Enzymes & platelets arer normal. That doesn't surprise me since they stayed normal last time.

Emotionally I am having a lot of bad days. Laying around isn't so bad. I have plenty of projects to work on. The problem is I am having a lot of problems with my OB, peri and many of the nurses. First, both OB and peri want BP taken laying down and they are only doing dipsticks for the urine, no 24 hour urines. I have only found a few nurses that agree BP should be taken sitting up. Of course, it doesn't matter b/c my OB & peri want laying down pressures. Second, I really have a problem w/ the criteria my OB & peri are using for delivery. 1. BP of 160/110 for at least 6 hours, laying down, 2. platets of 119 or less, 3. 7 grams of protein, 4. abnormal enzymes -- no exact # given or 5. headache or liver pain. They have said they will not deliver before 37 weeks w/o meeting one of these criteria unless I have an amnio that says her lungs are mature. So basically if I get worse before 37 weeks, I am guaranteed to have mag. It is very upsetting to me that they are not letting me have any say in the criteria for delivery. Finally, I am surrounded by doctors and nurses that have never lost a baby, and they do not understand that I want Maija delivered at the first sign of trouble rather than waiting and letting things get really bad.

I keep reminding them that I only had PIH or mild PE when we lost Aidan. So the thought of them letting me get to severe PE or HELLP before delivering FREAKS me and Tim out. (that's me! :) Of course, we don't want Maija to have to stay in the NICU, but I also don't want to go through severe PE or another emergency. Now that we have reached 32 weeks and have had the steroid shots, I think Maija will do really well in the NICU. It really upsets me that they are not letting us have any say and I cannot even count all the lectures I have gotten about how selfish I am for putting my health before Maija's. Which I am not even doing! Aidan suffered the brunt last time! I am totally thinking of Maija.

So... I could really use some encouragement. Do you think the doctors are right? Should we suffer through severe PE or HELLP if it comes to that to buy Maija more time? Or should we keep pushing to have a say even if it means switching doctors? And how do I deal w/all these doctors and nurses that just have no idea how losing a baby affects the way you view your next pg?

I hope all you other pg ladies are doing well. And I hope NONE of you get it this time!

-Amanda

Amanda (28)
Hubby (28)
~i~ Aidan Timothy - 4/14/03, pre-e and abruption
Expecting again!!!
EDD 6/11/04
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Re : Question from Amanda

Postby twolfgram » Sun Apr 18, 2004 01:15 pm

by twolfgram (388 Posts), Sun Apr 18, 2004 01:15 pm

Hi Amanda (& Tim!):

Sounds like you're having a hard time! I hate to say this, but it doesn't sound to me like they're being unreasonable. Maija has a much better chance the longer she gets to "cook" and in the womb is the best place to be as long as health isn't compromised, both yours and hers, and until one of those criteria is met, yours isn't. My peri always wants my BP taken while lying down, too, because if it goes down while on my side, that's a good sign, if it's high sitting up and stays high while lying down, then she said it's not good. I'm not sure why, but that's what I've been told. Are they doing BPP's on the baby or at least ultrasounds to make sure she's doing ok? If not, I would insist on that. I know it's hard and you know I lost Erik at 29 weeks, so I know what it's like to lose a baby. I also know what it's like to have a preemie in the NICU for 11 weeks. It's no picnic. The fact that you're 32 weeks and have had the steroid shots is great, but it's still no guarantee that the NICU stay will be easy. I'm sorry if this isn't what you want to hear, and it's just my humble opinion for what it's worth. I would question the he!! out of the doctors if you don't agree with their plans. Hang in there!

Therese Mom to
DS 10/4/95
DS Stillborn 12/20/02
And "Baby dot" - EDD 9/11/04!
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Re : Question from Amanda

Postby sonja » Sun Apr 18, 2004 01:16 pm

by sonja (5658 Posts), Sun Apr 18, 2004 01:16 pm

Amanda - I am so glad to hear that you are doing pretty well with all of your labs etc, but I am sorry to hear that you are having problems with your docs. Does the hospital have some sort of advocate you can talk to? It seems that I have heard someone hear mention something of the sort. If you are not comfortable with your doc's for sure get a second opinion. Have your doc's explained why they are using the criteria that they are? I wish you well and will continue to check to see how you are doing.

Joy
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Re : Question from Amanda

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

by 3preemiekidz (84 Posts), 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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Re : Question from Amanda

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

by lauras (91 Posts), 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
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Re : Question from Amanda

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

by deerhart (3282 Posts), 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
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Re : Question from Amanda

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

by paljane8 (1416 Posts), 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/
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Re : Question from Amanda

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

by akemt (4961 Posts), 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
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Re : Question from Amanda

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

by megansmom (768 Posts), 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
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Re : Question from Amanda

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

by jolynn191978 (15 Posts), 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
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