4/16/11

A Difficult Time

It's been really hard for me to post, I have thought about it a hundred times in the last weeks, but everything has just been so miserable, and I had this terrible feeling that it would all just be depressing bad news and complaints for people to read, so as much as I've really craved support and feedback, I've been afraid to post.

Three weeks ago when I returned from Florida, a really nice break with lots of sunny beaches and calm sweet time with my honey, (plus it was the beginning of relief from a long period of first trimester 24 hour nausea, on and off depression and exhaustion), anyway when I got back to NYC, I had a day of seeing clients before we went off to Long Island to celebrate my stepdad's 80th birthday with a weekend gathering of a gang of family I haven't seen in a long time. I was excited that I was going to announce the pregnancy there.

I had had a headache that had gone on for 2-3 days and I just wasn't feeling well. My pregnancy books said headaches in the second trimester were to be expected. I felt a strong need to show up at the birthday gathering, it meant a lot to me, but I woke up the day after arriving there with the same weird, bad headache on the left side of my head, and just felt off. I called the midwife on call at my OB's office and she said to have my blood pressure taken. We drove to a local walk-in clinic that didn't take my insurance and charged $100.. walked out and went to the local drugstore for a reading. The reading was so high, I thought the cuff was just too tight. We ended up buying a bp machine, and then still going back to the clinic because we didn't believe my BP was so high. At the clinic it was somewhere in the 180's. They sent us to the local emergency room. I was put on IV magnesium, and two other drugs that made me so ill I couldn't see straight. At one point my BP was 200 over 110. I began vomiting. Over the next 24 hours I vomited so hard that I broke blood vessels in my eye. I was sent by ambulance to Stony Brook Hospital. They kept me there for 5 days and did every test you can imagine on me. I won't bore you with the details, but the upshot was just a diagnosis of hypertension. I was warned that I have a high chance of getting pre enclampsia, tho they don't diagnose that until after 20 weeks, and I was only 17 weeks at that time.

The other thing going on was a very bizarre and painful condition that I have had since I got pregnant. It's called Reynauds syndrome of the nipple. People usually get Reynauds in their fingers and toes, and it is a vasospasm, often but not always caused by cold, that turns them white, and then blue. I get it in my nipples. It is the most painful experience I have ever had, it feels like I'm being tortured with pliers. It compares to the pain I felt when I was having surgery and the anesthesia wore off in the middle. It burns. I have a high pain tolerance, but this has made me cry. I was getting it about once a day or so, for about 15 minutes, before the hospitalization. I told every single health professional I encountered about it and got lame responses from my OB's like, "try moisturizer" and "my wife had really bad breast pain too" and from the midwives and my doula, "I've never heard of it, I'll look into it". I ultimately learned what it was, from googling "severe nipple pain". There were quite a lot of women on the Internet wondering what the heck it was.
The kicker was that the drugs that they gave me in the hospital aggravated the syndrome, so that I was getting episodes every hour or two. No one knew that..about the drugs. They ended up having a meeting there to educate themselves on it, to their credit. Finally I was put on Nifedapine (pro.cardia) which was what I kept telling people was the answer. It has lessened the torture, but has not gotten rid of it. I still get it many times a day but it is a bit more tolerable.

By the way, I was treated very well at Stony Brook. I hate and fear hospitals in general, but I have a new respect for their potential. I felt respected, listened to and very thoroughly cared for, and had a lovely private room in the antenatal section. My husband was allowed to sleep there with me the whole time. We joked about finding one of the linen closets and having hospital sex a la Gray's Anatomy, but I didn't really feel up to it :)

A few days after being discharged (on medication now for BP) We visited my Maternal Fetal Medicine Doctor upstate. When I walked in she said "I guess they didn't diagnose you with Pre Enclampsia because you're still pregnant". I felt like she punched me in the solar plexus. I still feel my understanding of Pre Enclampsia is tentative but what I seem to be getting is that the "cure" for it is to deliver your baby or babies whether they are viable or not. This is  terrifying for me.

My Obstetricians office had basically fired us over the phone while I was in the hospital. The Doctor my husband spoke to said "we're too rinky dink for your needs"... OK, well better know that now than later. Long story short we have found a wonderful, heartfelt, kind and good doc, who shares a practice with a very reputable high risk specialist. I am extremely happy with them. They only downside is that they are in Manhattan, two and a half hours away! My husband and I are seriously considering moving back to the city. Very seriously, and soon.

We went for my first appointment there 3 days ago, and they did the anatomy scan. Baby A is a boy. I am afraid to celebrate anything.
Baby B is now three weeks behind (they can't see the sex), and the doc saw something in the abdomen that concerned him. Some fluid.. he wasn't sure what it was so I am referred to a super rock star doc at NY.U for another sonogram next week. The doc said that there could be an issue like downs or trisomy 18 (even though our screening came out well before). Or that there might be a defective placenta due to the high blood pressure. In any case no one has much good to say about the fate of baby B.

I can't even begin to say how upsetting this has all been. Maybe in a later post I can describe some of the feelings coming up. One result has been that I am afraid to have any hopes for any baby at all. I am so afraid of the the images of their death and suffering that play in my head all the time. And all this is while I can still feel them swimming around inside, still a new feeling.

19 comments:

  1. Oh Rosie, This is quite a bit to be dealing with. I am glad that you shared though so that you can get some extra support.

    So interesting that you mention Reynauds syndrome of the nipples. It sounds very much like something that I've experienced throughout my life, but especially when I was younger. I am going to read more about it now.

    Sending you some calm loving thoughts as you wait for your next appt. You are strong and you will get through this.

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  2. How awful to have to go through all this worry and pain.

    I will be thinking of you and both babies. I hope you get some better news soon.

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  3. I am so sorry you are going through all this right now, a time when you should be rejoicing.

    Thank you for sharing, and I am keeping you close to my heart right now. (((hugs)))

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  4. I wish I could take this all away and leave you with a healthy pregnancy and healthy babies.

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  5. I found you through a fellow blogger (Vegas), and just wanted to let you know I'll be praying for you, your babies and your DH! I'm sorry that you are going through all this and that it is all a mystery, I hope that it will all turn out ok.

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  6. Found you through Vegas. You and your babies will be in my thoughts and prayers.

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  7. Oh my, just jumped over here from Vegas. So sorry to hear all that you are dealing with. Hugs and prayers and everything else to you!!

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  8. Oh, how terrifying! Will be keeping you all in my thoughts. xoxo

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  9. I'm here from LFCA and just wanted to say how sorry I am at all you are going through and dealing with -- and for your MFM's insensitive (to say the least) remark, good grief! I don't know much (if anything) about hypertension during pregnancy or pre-e, but will be thinking of you and your twins and hoping for good news.

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  10. Thinking of you and your babies. A few years back, I was in a fairly similar place and you are all in my prayers.

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  11. I'm sending lots of healthy thoughts and peaceful prayers to all of you. Thank you for updating us and I hope the rock star is able to give you some hopeful news about this situation!

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  12. I am visiting from ICLW and am so sorry to hear everything you have been through recently. I can't imagine how hard it is, but I am thinking of you and your babies and wishing you the best.

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  13. I am so sorry you're going through this, Rosie. From the blood pressure issues, to the anatomy scan, it sounds terrifying. Your husband sounds like he is an amazing support and I am so glad he is there, with you, through all of this.

    As hard as it is right now, try to allow yourself to visualize your babies healthy and growing strong. During a time where things feel so out of control, it's something you can control. After all-- you're their mom. And that's what moms do--always hope for the best for their children.
    Many positive thoughts and prayers to you, my friend.

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  14. Here via ICLW- so sorry for what you are dealing with. Thinking of you. :(

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  15. Stopping in for ICLW - sounds like you have been through a lot here recently. I hope everything checks out OK and you have the best of doctors to help you and your babies throughout the remainder of your pregnancy!

    ICLW #150

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  16. Here via lost and found...

    So sorry that you are having to go through all of this. It saps all the joy out of finly being pregnant. (I had a difficult twin pregnancy in 07 that was filled with complications and scares so I can imagine what you might be goig through.) remember to take things one day at a time. Sending warm thoughts for a nice long pregnancy with TWO happy babies at the end. Much love...

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  17. it sounds like your so stressed out. i hope you get some good news about baby b soon.
    I agree with pp - one day at a time.
    sending you hugs

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  18. I am so sorry you are having to go through all of this...it sounds awful! I hope that the new specialist can help figure out is going on anf give you some peace of mind. Hang in there!

    ICLW

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