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I don't know if many of you are keeping up on my threads in this DDC but if you are I just wish I could get a gods [email protected] hug...

I've been conversing over these last couple of days with an MDC mama off MDC who is SO helpful and reassuring and makes me smile and... yeah!

But the medical field is just beating me down and making me feel so bullied. So broken. So much like a dang petri dish that they can play HOCKEY with.
: I'm not gonna go into a huge long post about it all (although what I will type will likely be very long) so if some of you are going "huh?" at the end of it, let me know and I'll TRY to clarify... but even I need some dang clarification that I'm not getting.

1.) Had the second level 2 u/s while DH was on his road trip back from FL. Had a perinatologist that was foreign born so while he did speak english and was helpful at least in suggesting other options ... I would like to think that because there are SO many words in the English language that can appear to mean the same thing but over time they just don't or are more crude than they ought to be.... that because of that maybe it's why he and I had some... issues.
During the u/s I asked the technician to show me how they can tell Las (DS) has a club foot, she showed me and it helped me understand a bit. I asked her about the size of Las' stomach and she said that it was measuring 25 weeks, about a week behind from what it was supposed to. I'm thinking "GREAT!!! His tummy is getting bigger it's not practically non existent!!" I ask if there is still extra amniotic fluid though and she said "OHHH Yeah" mmkay. -scratches head- Then she tells me that the ventricles are still enlarged in his brain and that there is a lot of fluid yet. She spent some time looking at his heart and trying to get a good heart reading but she said he kept kicking the umbilical cord (when she was trying to get the reading from the cord).
Doctor comes in and says..... "Nothing has changed, everything is still the same from the last u/s. No updates, still no cerebellum, still has a small stomach..." I cut him off. "No cerebellum?? Either they lied to us last time or you are mistaken. We specifically asked if there was a cerebellum sir and they said YES." He says: "I'll show pctures." And he runs off to grab the u/s pics from the 1st level 2 and then the one from that day, as well as a medical book that shows the size of what it SHOULD be. He was pointing out how it's supposed to be all peanut shaped like in the book, so I grab the pictures and the book and look and compare. My son's cerebellum is there. I point this out and THEN guess what he says!!!!!!!!!!!!
"But it's so primitive it might as well NOT be."

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He goes on to tell me that I can go down to the cities to the Children's Hospital/Abbott and have an MRI of the baby done to POSSIBLY see if there is any more information they can give us. So I'm all for that. I'm practically pushing him out to the phone to schedule the appointment. BUT since it's the end of their work day they say they'll call me and send me home.

2.) Got a call from the OB about 3 days later. She insists we come in the next day to go over the u/s results with her so she can answer some questions. I joke with DH (who's back by then) that she'll be able to tell us diddly because she isnt a perinatologist. And low and behold. Nothing. Nothing except, "I can't see you any longer you're too high risk for me so I've already taken the initiative of calling a few other OB's and told them about you and there is one at Health Partners who will take you. I've ALSO gone ahead and talked with the neonatologist at the hospital here and he thinks it should be perfectly ok for you to have your baby at St. Cloud. I'll send a referral through for you to meet with him. I've also already transferred your records to the new OB. OH, btw, did you go and do that glucose screening when you first came in?" I was just like... omgwtfbbq??? No I didn't get the glucose because I don't want to have to drink a freaking huge thing of sugar and shock my system (I hadn't eaten yet that day) NOT to mention when I asked her if I could do the jellybean method or just eating a high in natural sugar breakfast and then coming in to do it she looked at me like I told her ET was standing behind her. SHE'S NEVER HEARD OF THOSE METHODS!!! I did the breakfast for my midwife with DD!!! So DH and I walked out of there with a.) no answers still b.) no ob really c.) being told that everyone under the sun knew about our "case" and they were deciding what to do about it without even consulting me.

3.) Fast forward to two days ago. I get a call from Abbott Hospital in the cities. The nurse on the phone told me she went ahead and took the inititive of CANCELING my lvl 2 u/s up here where I live and scheduled me one for there. It was ALREADY cancelled when she called me, there was no asking if it would be ok! They had already scheduled all my appointments, not bothering to see if the day they picked was even REMOTELY workable for ME (thankfully it is I suppose. I will have gotten no sleep the night before because I work until 6am and the FIRST appointment is at 8am). Anyways, they've scheduled me with a cardiologist, a neurologist, an MRI, an echo of Las' heart, a lvl 2, and an amnio (!?!?! When did I ask for that? but yeah sure... since I'll be there and all...
). I got off the phone and about cried. The only reason I didn't was because a parent in DD's playgroup was over because she's training to be a doula through DONA and I offered (before finding out all these problems) to be one of her reports she has to make to get certified... and I'm sorry I dunno how getting certified through DONA works and all but I don't want them reading about some super emotional pregnant woman because of a phone call...


4.) today. Lovely today. I was on my way out the door to go to my DBT therapy (I'm borderline personality disorder previously thought bi-polar) and the phone rings. I answer it and this bubbly cheery nurse on the other end says "Hi I'm calling to schedule your tour through the birth center here at Abbott where you'll be giving birth!!"

Um. I haven't decided if I'm giving birth 8 miles down the road at MY local hospital yet. Who decided for me where I was giving birth??

So since I'll be down there on the 14th anyways I just told her to tack it on to the end of my appointments. I asked her about laboring in the water and possible giving birth in the water (because I would REALLY like to at least be able to TRY a vaginal birth before hopping straight over and doing a c-sec) her response: "There are no waterbirths here and you'll need a special note from the doctor to be allowed to labor in the water. All the pregnant women here need notes from the doctors for that kind of thing"

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I can tell you right now.... I had an all natural water birth with DD but the ONE contraction I had OUT of the water about 3 hours before I had to push with DD made me hop back in that water so damn fast to get rid of the pain... (yes I'm a wimp) I CANNOT see myself NOT asking for meds if they don't let me in that damn tub!

I broke down crying again today. After awhile DH came in and we just laid on the bed and held hands asking each other if we were scared. He said he would be as soon as the anger left him. He said he's so angry at the medical field right now he's no room for scared. He asked me and I could barely choke out that I was terrified. More terrified than angry. He ran his finger through my hair and told me that if he could have it his way he'd build be a birth tub with a heater in our garage, set up our extra bed out there buy some soft throws to toss on the floor, make sure space heaters were in there to keep me warm in october and he'd let me have the baby unassisted with him for support.

Knowing that we could NEVER do that... but knowing that he had put that much though into it (he had the soft fuzzy carpet in his head and the soft new sheets he'd get for the bed for after the birth and the gallon of OJ he'd have next to the bed waiting for me...) ... knowing that he would do that for me if he could to give me what I wanted made me cry all the more. All he could do was just hold me and say he was sorry that he couldn't and that he loved me all the while he was actually rubbing my tummy where DS is and saying sorry to him too. Seeing as my husband hasn't come near my belly with a 10 foot pole since all this medical stuff (save a few instances) I just melted. Later on when I came home from my appointments he hugged me and asked me if I was ok, and he asked Las if he was ok. I'm honestly not sure what to think of that.

We've been talking more about adoption. We learned more about what open adoption is and I'm looking into it a bit more open-mindedly than I was a month ago. DH and I are both wanting to wait until he's born or until we know exactly how much stress and on how many levels are DS' medical/developmental problems going to be before we decide anything final.

Gah. And I said I would try to not make this long.


I started this post one hour ago and am just now finishing. I need to get to bed. I have to work tommarrow night BUT I also have a lot of running around to do before work too.
 

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You are such a strong mama. I am so sorry you're not getting the help and support you need from the professionals around you. But I know you are doing the very best you can for yourself and your baby.

Lots of hugs. I'm thinking of you lots.
 

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I don't know what to say, but I'm sending some positive thoughts your way.
 

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I am so very sorry you are going through so much, Mama. What a brave and amazing woman you are to be coping this well. I wish I could say something to ease the stress you are going through but I can't so just lots of
If you need anything please let us know - we are all here for you.
 

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Omigoodness, I'm wiping away tears as I'm reading your post....you must be so tired of this all. I"m so so sorry that you have to deal with all of this stress. Certainly your "medical team" (and I use that term loosely) has not done a good job to 1. let you make YOUR health care decisions or 2. keep you "in the know" throughout your pregnancy. I can't imagine how difficult this must be for your and your husband.

I think the part that moved me the most is thinking of you two lying on your bed, consoling one another. It sounds to me like even though your DH might have been a little distant in the past, he is ready to be at your side 100% adn do whatever is necessary to help you through this all. He sounds incredibly supportive and thank goodness you have him!

I don't have any words of advice, other than to say you're being incredibly brave and strong throughout this. And calm....because if I were in your shoes I would have ripped a strip off the doctors and nurses by now.

Whatever your choice is in the end, this baby has so far had a wonderful, caring set of parents who are doing everything they possibly can to bring him into the world safely.
to you and whenever you need to vent, feel free. My goodness, it sounds like you might have a lot to get off your chest in the next little while!
 

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Im so sorry you are going through this. I can not imagine what you are feeling. I hope that you find peace with whatever decision you and your family make.

 

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I'm sorry you're going through this.


A note about the "making appts for you" thing... That is normal when it comes to specialists. When my fp made me an appt to see an infectious disease specialist, I was given an appt time. When DS had appts to get RSV antibody shots from a pediatric pulmonologist, I was given an appt time (he does them all on one day so that those without insurance can get "covered" by those who do, essentially, since the shot is $1000). When DS needed to get his "bendy foot" checked out by an orthopedic doctor, I was given an appt. Thankfully, I've never run into "I can't make it at that time" with all those specialist appts!

Scheduling you for an amnio without telling you ahead of time though... that's wrong. They need to be talking to you about your care. And you might want to mention to whomever is making these decisions that you would like to be included in the decision making process. They should be telling you "I'd like you to see a neurologist, etc.", and then after you say "Yes, I'll do that", then they should set up the appt and give you a day/time.

 

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I am glad to see that your DH is being supportive through this. I hope you find peace with the decisions you have to make. It makes me so angry to read about the medical folk being so bossy and not letting you in on the decisions affecting you and your baby! Sending lots of hugs your way.
 

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Hi there!

I'm new to the boards and your story was the first thing I read. I am truly sorry that your experiences with the medical team have been less-than-pleasant. I'm sending up lots of prayers and thoughts for you and your family for an awesome birth experience (YOUR way!) and a healthy baby boy!
 

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to you mama!

I understand your feelings of frustration with the docs. What keeps me from going mental when they do this to me is remembering that I am different from their average patient. Most women they see appreciate their level of "service" and "efficiancy" with the scheduling of appointments and the consulting about the case. They want to see every specialist under the sun. The medicalization of their birth doesn't bother THEM. Of course your situation is totally different. from mine and you have so much more to cope with when it comes to your DS. The ups and downs they are putting you through are really just unbelievable. I am so glad you have DH back for support and you are getting your therapy sessions in around all of the other appointments.

It must be so painful for you right now, having to look into adoption. Keep that mind wide open and look at all of your options. Your DS is obviously precious to you regardless of his medical needs. How lucky he is to have you to look out for him and make such good choices on his behalf. You are in my thoughts.
 

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I am outraged to hear how you are being treated by the medical community. It seems like in your situation you should be given MORE personal attention, not less. I am so sorry this is happening to you. Sending healthy vibes to you and your sweet baby.


One thing I thought while reading your post is that you obviously need more support and someone to help you through this. Is is possible for you to get a doula or midwife to see during all of this stress and to be with you at the birth? I know more $ would be involved, but maybe if you explain your situation they would be willing to cut their fees or donate time. I think it would be wonderful to have a support who is there for both you AND Dh...to help explain things and to be an advocate for you while the OB and specialists are doing their thing.

Best wishes, keep us updated!
 

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Momma--First I wanted to give you a big HUG! I am right there with you with a BIG distrust for most medical community stuff.
You have a hard road, but I want you to concentrate on ONE BIG THING right now...You are so lucky to have such a wonderful husband supporting you and holding your hand thru this. Keep your focus on his strength and let him strengthen you thru this time. Geez, I don't even know what I would do or how I would feel. But there is always a positive somewhere in there--we just have to look for it. I am so sorry you are going thru this--it is awful how much stress the Drs are putting you thru in an already stressful situation...BUT I'm SO thankful you have someone to be there for you!
Also know, we are all here for you and on your 'side!'
 

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I have no words to ofer only a HUG! Hna gin there. You are a real trooper and your DS will be blessed to have you bring him into this world, regardless of where or how he's born!
 

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Quote:

Originally Posted by mamajody
I understand your feelings of frustration with the docs. What keeps me from going mental when they do this to me is remembering that I am different from their average patient. Most women they see appreciate their level of "service" and "efficiancy" with the scheduling of appointments and the consulting about the case. They want to see every specialist under the sun. The medicalization of their birth doesn't bother THEM.
This is very true. They are usually shocked when you say anything about not wanting a certain test (in this situation especially). They assume that anyone in this situation would want to do every test possible. I try to think less about them and more about what I want and just make a point of telling them if I want to do something different. Of course it is still annoying how it seems like they are trying to take over your life, but that is the whacky medical system we have.

Do not let them intimidate you, but whatever you say it is best to say it with a smile (not necessarily literally, all the time). I make a point of being super nice to all the nurses and Docs, but if they get weird when I disagree or refuse a test then oh well. In this stage of the game you do not have all your Docs set up that you can rely on so you have to deal with all these strangers right now. Don't feel bad about asking for another nurse if they are abusive, etc.
It can be hard when Docs do not know how to talk to patients about such serious and emotional issues. They don't teach that in medical school. And also, I think that they have to do it so much that it becomes routine to them and they forget that this is all new to you.

I do think that you might as well get the tour of the hospital and all that. At least if you end up there you know what to picture in your head of what it will be like -- good or bad.

I would also think very seriously abou the amnio. That is a biggie.
I will PM you more about that.

I hope you are taking care of yourself.

to your family
 

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Oh ya, and there is nothing wrong with saying to a Dr. or whoever that you are having a hard time with all this info. they are throwing at you and that this is a very difficult time for you and your dh. Some people will actually apologize and soften things up a bit, but at the very least you have gotten how you feel off your chest a little.
 
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