Thursday, December 30, 2010

Dead Baby Appointment

How I was dreading this day and looking forward to getting past it at the same time. I wish I didn't have to go to that place for this reason. This should have been my 24 week check up, I should still be pregnant, Sweet Pea should still be alive and kicking on that ultrasound. I should have been happy to see Dr. H, not dreading what he has to say. I'm strangely a little sad to see this appointment come and go too because it will be the last appointment for Greyson and take me a little further away from the halcyon time when he was with me.

It was a mini-walk through hell within the bigger walk through hell my life has become. First of all, after I signed in the bouncy little girl at the desk asked if I was there for an ultrasound. I said, "No, I lost my baby 3 weeks ago." To which she responded, "Oh, I'm sorry. Did they still want you to have an ultrasound?" Umm...really? The physician's assistant who called me the week after it happened said she would take care of switching my folder. Further, I can't believe they don't train these children better. My GOD, what a thing to have to deal with. And the waiting...it was horrible. I nearly lost it several times but knew that if I did I wouldn't be able to listen or learn anything. I texted with MB and kept thinking...Stay focused, focused like a laser beam and learn as much as you can. The nurse, who I consider my nurse, did seem upset for me when she called me back for blood pressure and weight.

Dr. Hottie was genuinely kind and I might even say had a loving attitude toward me during our time together. In a doctorly way, not a creepy way. Intermingled with the medical stuff, he acknowledged everything I'm feeling. He said he knew how hard it was to come in there today and that it was a tough time of year to have something like this happen. He admitted up front that he doesn't really have the answers or know everything and that what he tells me today is his best guess. He took his time answering my questions, and was with me for over an hour.

He talked about how nothing could have been done by either of us to save the pregnancy or the baby. This is just something that sometimes happens. He was adamant that it was nothing I did that caused it. That there was no way I could have known an hour before when I felt the weird pressure what was happening and that even if I had called him when I felt the pressure it would not have changed the outcome. I asked him if he knew when I called him that it was over or soon to be over. He said he was very worried when I told him what had happened considering the amount of fluid and blood and that I was in the 20th week of pregnancy. He said he wanted me to have copies of everything related to the loss because he knew I was intelligent and a reader and researcher.


At one point, I commented that I was holding it together pretty well for our appointment. He said he was wondering about that. That he hadn't seen me show much emotion in the hospital and that had him very concerned and was why he had the assistant call to check on me the next week. I assured him that I wasn't doing very well with the emotional side of things at all but that I was a private cryer (In my head I'm thinking, he wasn't there the whole time in the hospital, what does he know about it). Later, I as I talked to my mom about the appointment she said she had been worried about the same thing, that I was so still in my body and my face was like granite in the hospital and I couldn't or wouldn't let go with emotions. I'm still not sure myself what was going on there. I think the idea of what was happening was so big and terrifying that I just couldn't get my head around it or maybe I was holding it in so tightly I was afraid of what letting loose would feel like.

We talked about antidepressants and I told him I thought I needed to be feeling what I'm feeling right now but how do I know when grief turns to depression? He said when it keeps you from functioning in your daily life. He said it was ok to cry everyday, I told him I cry a lot every day and he said that was to be expected. I told him there wasn't much I enjoyed, he said it was totally normal to feel like that after something like this. Later, I told him I was still bleeding lightly and he asked if it was ok for him to examine me in two weeks and we could revisit antidepressants then. I told him I'd probably have two more pages of questions for him by then. He said to bring them on, he'd answer anything he could.

I left feeling a tiny bit less tight in the chest, if that makes any sense. I still have some niggling worries and would perhaps want to change doctors in the future. This whole experience of losing Greyson has left me so unsure of everything, everything in the world.

Let the overanalyzing of every word the doctor says begin.

Questions for Doctor:
What exactly is what happened to us called: preterm labor, ruptured amniotic sac, PPROM? He walked in saying he thought it was an abruption so I didn't ask this one.

Death certificate says “abruption”? What is this and why wasn’t it seen on ultrasound? He walked in saying that he doesn’t really know, but his best guess is that it was an abruption. A clot or a vascular weak spot formed somewhere along the area where the placenta is attached to the uterine wall causing the placenta to detach. Once it detached the sac ruptured causing preterm labor. But really there is no way to know what happened.

Causes: None of these had anything to do with the abruption.
Age and weight? It was a donor egg so age was not a factor. I have no medical problems with weight such as diabetes or high blood pressure so that was probably not a factor.
Viral or bacterial infection? Gardnerella? Test? We were tested for these and it was negative.
Donor egg/Donor sperm? This is a more risky situation but probably did not cause the abruption.
Laptop use daily, sometimes actually over my abdomen? Not a cause.
Strenuous and long day a few days before and an activity where I had to reach up many times?
Not a cause.
My female donor has no knowledge of her father, could something in his background have led to this? Most likely not a cause but can't say for sure because we don't know what information we're missing.
Two days before at our 20 week ultrasound, you said you couldn’t see the bottom
of the heart and wanted us to have another ultrasound. Could this have something to do with it? Not a cause.

Greyson’s autopsy? The baby was totally normal. And all my blood tests came back normal as well.

I had a large gush of bleeding 12 hours after my four week internal ultrasound with Dr. A. They said it was caused by cervical irritation, old blood pooling at the bottom of the uterus and looking for a way out. Could this somehow be related? This could be related. There could have been a very small abruption at this time and then it healed itself but continued as a weak spot as the placenta and uterus grew. Again no way to know for sure. There was a lot of medical mumbo jumbo about blood in the uterus. He stated that any bleeding at all was considered not normal.

Is there something wrong with my uterus or cervix that it can’t hold things in? My uterus and cervix seem fine. On my 4 and 6 week ultrasounds with Dr. A my cervix was “long and closed”. Everything looked normal. I’ve read about something called “incompetent cervix” How do you know? Same answer as above.

Was there anything at all on the ultrasound indicating a problem of any kind? No, the ultrasound looked completely normal. It could have been on the ultrasound but they are in grayscale and you can’t always tell because even these days the quality of the picture is not good or sometimes the area with the abruption isn’t shown during that particular ultrasound.

I know the first gush of clear fluid was amniotic fluid, where did the blood come from?
A lot of medical mumbo jumbo on this one. What he said I think boils down to when the placenta pulled away from the uterine wall, some blood vessels tore loose with it, my and the placenta's? blood vessels are intertwined at this point. It could have been part my blood, part baby’s.

I was usually able to feel him move while still in bed in the mornings but I didn’t feel him the morning of the 4th. Was something already happening then? It is possible, the abruption could have already been pulling away or it could have been just one of those days he didn’t move. There is no way to tell.

If I had gotten to the hospital when I’d first felt the odd pressure an hour or so before, could something have been done? No, it was an acute case early in fetal development and happened very quickly, nothing could have been done even at this point.

Why was no medication given to stop labor when I got to the hospital? More medical mumbo jumbo. Something about it only being the 20th week and if labor did stop he probably wouldn’t have been able to keep the baby inside for as long as needed to become viable. And something about even if he could have miraculously kept him inside for that long, there would have been a high probability of the abruption causing a serious infection which could be dangerous or fatal to the baby and to me.

If I can gather my shattered soul for another try, when would be the soonest? Physically six months, only if I’m emotionally ready.

Is there a scan or test to tell if my insides are ok to try again? An internal ultrasound.

In, January you removed a polyp from my uterus, is there a chance that could have grown back by now? Yes, an internal ultrasound can see if there are polyps.

Do you think my periods will come back normally? Can’t be sure. Pregnancy sometimes causes periods to come back regularly for people who’ve had irregular ones before. (I've never had irregular periods.)

Considering that Dr. A. diagnosed me with diminished ovarian reserve a year ago…what does this mean concerning my periods and early menopause? It could be a concern, we'll wait and see what happens and take care of any problems as they arise.

What does this mean for trying again? My uterus is healthy and fine so pregnancy is possible with donor egg. A similar hormone protocol would probably be used to simulate a cycle. With medical protocal, technically a 100 year old woman could theoretically get pregnant if the uterus was healthy. I told him I feel 100.

What are the chances something like this happens again? Donor egg and IVF in general is more risky. No one can say what the chances are but it is fortunately something that this doesn’t happen very often. I told him it wasn’t fortunate for ME.
Is it MORE likely to happen again? Not more likely, probably less likely but can’t say for sure.

What are the chances I can survive it if it happens again? Didn’t ask it.

Are there precautions to take if I’m lucky enough to get pregnant again? Early and more frequent ultrasounds and consults with perinatologist/high risk OB.

How can you help me manage anxiety if I get pregnant again? Medication only if needed.

Would you be willing to see me as often as I need to reassure me of a safe pregnancy? Yes, he’d see me every day if I wanted. He has an “open door” policy and I could drop in any time for reassurance. He was sure to tell me not all places are like that.

What is the difference between you and a high risk OB/perinatologist? Perinataologist has more knowledge of high risk cases and the statistically odd things that can go wrong. While Dr. H. reads and researches only gyno and ob stuff, Periguy reads and studies only high risk research and articles and sees only high risk patients.

It is my understanding a high risk OB would work with you, do you think I need one? Dr. H would work with the periguy on a consultation basis. Dr. H would still be my OB and deliver baby. Yes, seeing a perinatologist would be a good precaution to take. Then he talked on about some doctors at SLU who would be the best to see.

Would I see the perinatologist before trying to become pregnant again? Yes, a prepregnancy consult would be advised. Sometimes the specialist can see things that might have been wrong that the regular OB can’t see. (I'm wondering why I wasn't sent there with this pregnancy although I know it probably wouldn't have changed things.)

Dr. A put two embryos in me, would this have happened earlier if there had been two? No way to tell, twins sometimes grow from the same placenta, sometimes they each have their own.

Should I have two put in if I try again? Yes, that is standard practice and very much increases the chances of getting pregnant.

Less chance of getting pregnant with frozen embryos, right? No, he thought it was still about the same with frozen embryos considering the newer technology and quick freezing.

Records of pregnancy and loss sent to Dr. A. Yes, they will be sent and a copy given to me as well.

Anxiety attacks? Normal to have these and will get better with time, he prescribed Xanax.
Raging headaches when I wake up? Again normal, probably stress related and will get better with time.

How do you know I don’t have PCOS?
--heavy esp. on top, infertility, weird hair growth, you removed some cysts 5-6 years ago during a D & C.
He thought I did have a very mild form of it but that I didn’t have the metabolic portion of PCOS that would affect pregnancy. (I don't remember hearing of this before.)

I've already begun a new list including:
Why wasn't I sent to the periguy to begin with?
Would you have been able to see the abruption with a 3-D ultrasound?
How do I know if I'm emotionally ready to try again?
Would it have changed things if I didn't have the 6 week internal ultrasound?
Should I have internal ultrasounds in the future?

12 comments:

  1. I'm so glad you got the majority of your questions answered.

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  2. I don't know if you are close enough to St.John's Mercy (I'm in St.Louis), I had consults with a high risk doctor at St.John's and a high risk doctor at SLU...I personally liked my doctor at St.John's Mercy a lot more, and she has been awesome. (My own OB actually used her to deliver her 2 children, she was high risk because of pre-eclampsia.) If you want to know who I'm seeing, feel free to send me an email and I'll be happy to tell you. (angiew901@msn.com)

    I'm glad you got all of your questions answered. I'm surprised they told you that you have to wait 6 months, we only waited 3 and I had had a c-section. I would ask the high risk doctor about that too.

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  3. I am so glad you got all your questions answered. I know that new ones are going to crop up but hopefully the answers gave you a little peace. I wish you all the best and you are in my thoughts and prayers.

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  4. I am happy that you were able to get through this and get some answers. I'm very proud of you and you should be of yourself.
    I am impressed that he was willing to stay with you for an hour and gave you more bedside manner than he did before. I think it's good that he is willing to up your appointments or let you "walk in" if you feel the need and you decide to try again in the future. I hope hearing it from the horse's mouth that there was nothing that you did or could have done to change it gives you a little more peace.
    When I had the sac break with Stephen, the specialists all came to see me in the hospital and looked at my chart and didn't change anything that my regular doctor was doing. So using the other doctors as consults sounds pretty normal.
    I know that doctors differ in the amount of time they tell you to wait to try again, but he might just be concerned about the emotional side when he says 6 months.
    I'm glad the John Cunningham mantra gave you something to concentrate on :)
    I love you and thank you for sharing this with us. Ya ya melissa

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  5. It sounds like Dr. H really took time to answer your questions. I'm sorry to hear that going to the clinic was difficult, but I am happy to hear you were able to stick through it and find some answers.

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  6. When you're ready, 3 books that really helped me were 1. Preventing Miscarriage: the good news by Jonathan Scher, MD 2. Trying Again by Ann Douglas and John R. Sussman, MD and 3. Pregnancy After a Loss by Carol Cirulli Lanham. All have good medical and emotional advice, as well as stories from real-life women who have walked in our shoes.

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  7. Hi Paige.

    Sounds like your appt. went well...well, as "well" as can be expected for a situation like this.

    Couple of thoughts I wanted to share...

    Our first born was conceived via IVF and I was 34 at the time. After being released from the RE, I was handled by a high risk OB, but only b/c I was a diagnosed infertility case. She had handled our previous losses. That being said, she is not a perinatologist and I was not sent to see one, even though I was considered to be high risk b/c of previous history and the nature of IVF.

    With our surprise conception of Benjamin, I was referred to a peri. Why? B/c at this time I was now 36 and would be turning 37 before delivery. My age alone put me into a high risk category and it was recommended that the Level 2 ultrasound (only performed at peri offices in our area) be performed. All was good showing no chromosomal abnormalities with baby or uterus/cervix, etc.

    With our most recent surprise healthy conception (last year), we were referred to the same peri, but for very different reasons. This time I was pregnant at 40, had a history of gestational diabetes (2X) AND my early prenatal testing came back with a 1:17 risk for Down Syndrome. So, off to the peri we went.

    Again a level 2 u/s was performed and no markers for DS were seen. We refused amnio due to our loss history. Just the thought of a needle into the amniotic sac gave me the shivers and it wasn't going to change the outcome of our pregnancy (termination was not an option for us b/c of a DS diagnosis).

    As I have had a bajillion transvaginal u/s I feel confident in saying that this was not the cause of your placental abruption. The probe might irritate your cervix, but as it does not enter the uterus it couldn't have caused the tear.

    When we miscarried 2 years ago (8-weeks, loss of a heartbeat) the only way to accurately measure babies growth was thru the use of t/v u/s. The loss was credited to my age (39 at the time) although pathology was not peformed b/c I had had 2 live births.

    All in all, my husband and I have had 8 pregnancies...with 3 live births. There have been many dark days over the course of this past decade.

    Feel free to email me if you have any more questions about perinatologists, t/v u/s, IVF, etc.

    Now that you've had this loss, I think seeing the peri before hand as your doctor recommneded is a great idea. Unfortunately, it sometimes takes a tragic loss to get that kind of referral b/c you've had no past history to indicated needing one.

    Keeping you in my prayers,
    Valerie
    vkueter@kc.rr.com

    P.S. My sis is an ICU nurse at St. John's Mercy (great hospital)and my BFF went thru IVF at a clinic affiliated with rachelbk's reference of Dr. Jonathan Scher. He's famously popular in IVF circles.

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  8. I am so glad Dr H was so thorough with answering your questions. It sounds like you got very clear an consise responses from him. Sending you loving & positive thoughts & prayers as you digest this information.

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  9. Glad you got your consult and that it was lengthy so you could ask and question and cover as much ground as you needed to. I cannot even imagine what you're going through Paige - but feeling sad and grieving and crying every day has to be more than normal.

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  10. Paige, I just wanted to stop by and let you know that I'm thinking of you. Today is a tough day for us baby loss moms - as are all holidays I think. My twin boys (from DE IVF) should have been coming home from the hospital about now, not me looking at their ashes and trying to wish away losing them.

    Let me assure you that crying every day IS normal. And not crying some other days is normal too. This grief is not a linear process - some days are good, some days suck beyond belief. I think this is the hardest thing I've ever dealt with in my life - so my heart goes out to you.

    I do hope that you get whatever you need from the infant loss support group - I found it helpful, my husband hated it. We each process things differently though, and for me, there was some comfort in being in the same room with other baby loss moms.

    Hugs to you - and I wish you much strength as you decide what your next steps will be.

    BTW - it might be worth calling your OB before your next appointment and asking if they could schedule your appointment at a time where they can put you straight into a room, rather than waiting in the waiting room with all of the pregnant women. My OB did that for me (and even let me come in the back door) - and that truly saved me from dissolving into tears in their waiting room.

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  11. Glad that the doctor gave you the time you needed to help answer your questions and it does sound like he would continue to do so in the future.

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  12. First time here, but I read through all your Dec and recent posts. I am so sorry for the loss of your beloved Greyson. You love your little son so much, that is easy to see. I hope your broken heart is slowly getting a patch over that huge hole he left behind.

    As a NICU RN, there is nothing anyone could have done. Not for him, not for the abruption. A clot that huge COULD have happened very quickly and could happen to anyone. Fluid that low, so much blood loss, so very early... A catastrophic, horrific thing. I am glad you were able to get answers to your questions and am glad the doc spent so much time with you. Seems such a rare thing these days.

    I am truly devastated for your loss of your son. It's very much not fair, not at all. Keeping you in my thoughts and prayers.

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