Saturday, May 7, 2011

Rough Day

23 weeks, 6 weeks + 2 days post rupture, day 3 in hospital.

Yesterday after my morning started okay, but it quickly went south. After breakfast the psychiatrist resident shows up. I didn't mind talking to her as it was nice to share some of my sadness, concerns etc about being in hospital and how afraid I am that I'm going to have another dead baby. She was nice and at least she was someone to talk to.

But then, not long after she left the social workers show up, and I have to go over my whole medical/life story again. Heart defect, happily married, working in NICU, pregnant, bleeding, off work, scary delivery, dead baby, grief, grief, grief, new job, pregnant again, happy, rupture, sad, bed rest, off work, shreds of hope, leaking, and now hospital. The social worker and her student were also nice and tried to be helpful and recommend things to keep me busy here (book cart, movies, talk therapy groups etc). After they left I was exhausted. I've run through my sad story twice with two different (caring) but also somewhat intrusive professional groups.

My mom showed up about this time, and although I was glad to see her, I could have used a nap. I was all upset and sad from my over stimulating morning and pretty much wanted to just lie there.

Then, the congenital cardiologist showed up (barged in) is more like it. With barely any discussion or preamble he states that "your heart rate is quite high so I would like to have you on telemetry monitoring". Telemetry monitoring is basically being attached to cardiac leads and then you are required to carry around a walk-man sized purse like recorder that keeps track of all the data and alerts the desk if your heart rate is 'too high'. I FREAKED OUT. I know it seemed like a 'small' thing to him, but it was just the LAST straw. I'm already so depressed about leaking, about giving up my home, about the fact that even though I'm here at the hospital there is 'nothing we can do for your baby right now'. I already worry about my health and my heart and my mental and emotional ability to carry this baby...and it was like this cardiologist was just confirming my worst fears "you're a cardiac patient, you are abnormal, you might 'decompensate' at any moment and we need to have you monitored at all times in case your body starts to give up". It was horrifying.

On Wednesday when I was at home, no one was monitoring my heart, no one was concerned about my heart rate. There were no nurses taking my temp every 4 hours. No one was waking me up to give me antibiotics every 6 hours. I was scared to be alone, but at least I had some control over my body, over my surroundings, over my life. Now I feel attacked by 'helpfulness' and I'm constantly feeling like I have to defend myself "no I don't have any cramping, no I don't have any heart palpitations, yes I'm still leaking yellowish fluid, no I need anything else" etc etc. ad nausem.

As you can imagine, this cardiologist was unhappy with my unwillingness to submit to his constant monitoring. I said he could do an ECG to monitor my heart if he wanted to (which takes about 5 minutes, and was done not 10 minutes after he left), but I was NOT being hooked up to machines on a permanent basis. Not now at least. If anything changed or I was feeling like my heart was becoming an issue, then yes, absolutely, monitor the hell out of me...but I'm not in the hospital because of my heart! I asked him to go back and review my history (he had read a total of ONE note on me and had not even seen a recent ECHO), and talk to my regular cardiologist before he proposed any other treatments. He seemed kinda pissed when he left, I was in tears, my mom who watched the whole interaction was trying to be supportive and placating at the same time, and then my brother arrived!!!!

I was anxious and stressed out for the rest of the day. When Brian arrived in the evening, I wanted to beg him to take me home. I hate this place and hate what it's doing to me mentally. They haven't even given me an ultrasound yet (my one and only favourite monitoring device) to check on how much fluid I have. I might not get one until next week or the week after.

After Brian left, I couldn't sleep. I was absolutely exhausted, but my mind was racing. I couldn't get my heart rate to slow down (scary! maybe I do need monitoring! maybe something's wrong with me!) Finally at 1:30 am, I called the nurse and asked for some Ativan (a mild sedative that's safe for baby). She was lovely and sat in my darkened room and talked to me for a few minutes until I felt calmer. After that I was able to sleep...until 6:30 am when they woke me up for temp and blood pressure checks and to give me my antibiotic. Fortunately I was able to sleep again (fitfully as my room mate was up and about around 8:30 ish), but I refused to move until after 10 am.

Now it's afternoon and I have a friend coming to visit and she's going to bring me lunch. No doctors have been in to bother me (just the nurses), so I'm okay right now. I'm dreading the cardiologists arrival as he said he was going to come back to see me over the weekend. I'm sure he's labelled me an 'uncooperative and hostile' patient, but I don't care. I'm not going on constant cardiac monitoring unless there is a damn good reason. And I really hope to never give him the satisfaction.

Are there medical professionals you've met over your lives that you've had confrontations with? How did it leave you feeling? How did you resolve the issue?


  1. I think at this point in time you are feeling out of control and would (and should) retain some control over your care. You are absolutely right in that if you don't feel that you need the telemetry you should be allowed to say no. If I were your cardiologist, I would have listened and made a deal along the lines of "if this happens (i.e. hr goes higher, or palpit. etc) then we should reconsider the telemetry. Keep a close eye on the fluid intake. I almost got heart failure while on bedrest at 20 weeks last time because they were over hydrating me and I was lying flat, and my heart is supposedly fine. I had elevated JVP and was short of breath and my hemoglobin went down to 80 because of hemodilution. And if you don't feel like talking to the social workers, by all means tell them to come back later. It is your room you know. I will be here reading.

  2. It is so exhausting going over and over your medical history and advocating for yourself.
    You do not need this additional stress. I hope today is much better.

  3. Emily,

    Bravo on standing up for your heart and your knowledge of your body because it sure sounds like you knew more about your care than he cared to take the time to learn. I know it's exhausting but you really are amazing for retaining some control. Also, I would be ultra-pissed that they have yet to do an ultrasound!!! I mean, really?? That's the one way to comfort you, to placate you and to bring you hope. You would think that they could easily send you for one. (the lack of ultrasound reassurance would leave me in tears in honestly). I'm sure you feel like that is the one reason why you want to be in the be reassured that you are maintaining some fluid for Acorn...and to not have it on a weekly basis really leaves you feeling like the hospital is doing nothing but causing you stress and worry. Can you push for one by suggesting that you (and you doctor rightly) are worried about some incompetent cervical issues?? I'm sure that you've done all of this already:(

    I know how upsetting it is to be constantly be told that there is nothing that they can do for Acorn yet. I know when I went to L&D at 22 weeks and realized that things weren't great for Liam and I heard numerous times that it was too early and there was nothing they could do yet that I eventually just stopped listening to them and shut down. And I was only there for one day! I feel for you sister. This situation is more upsetting and saddening and frustrating than words can even describe.

    Soldier on. You are really doing a great job!

  4. Ugh, so sorry you had to experience such a rough day yesterday...hoping so much that today is more relaxing and less intrusive. I think it's wonderful your advocating for yourself and it's good for you to feel some semblance of control in a situation where you have so little. Continuing to think of you often and hoping calm uncomplicated weeks are ahead of you!

  5. Do whatever you can do to keep your stress levels in line considering what you are experiencing. Perhaps you can call your regular cardio. and ask his.her opinion?
    Thinking of you...

  6. This sounds like a really terrible day. I'm glad you have kind nurses, & glad you were able to stand up for yourself to that cardiologist, but I so wish you didn't have to go through any of this.

    And my first non stress test w/ my second pregnancy threw me into a panic, & the nurse tried to handle me in precisely the wrong way. My Dr. thought I was probably dealing with some PTSD, & put a note in my chart that let the hospital staff know I needed some extra time & sensitivity. We did request a different nurse the next time I went in while this one was there. I wouldn't be surprised if part of what is making the hospital so hard (besides the current circumstances, which are scary enough) are memories, smells, & sounds that remind you of Aidan's birth. This may not be possible/ effective at a bigger hospital (ours is very small & everyone seems to know each other), but could one of your own doctors be able to put a note in your chart, or put in a word to remind people at the hospital to at least *read* your chart?

    Thinking of you & hoping hard that things look up soon.

  7. I remember feeling like a helpless prisoner in the hospital too and how when my baby was in the NICU it felt like he "belonged" to them and not to me and I needed their "permission" for anything; it was an awful feeling.I just wanted to take him and go home! I also think psychologists and social workers are nosey and intrusive and I avoid them at all costs. Some times you just want people to go away and leave you alone. I totally get that. You are in my thoughts and prayers.

  8. I remember that helpless, depressed, terrified feeling when I was in the hospital last year. It sucked! I am just sorry that you are having to go through this and I wish I had something to say to make you feel better. I am thinking about you and I hope that you are able to get some sleep tonight. ((hugs))

  9. I'm going to school to be a Social Worker. If you feel like it - I'd love to know what you like from a SW and what you don't like.

    Keeping you in my thoughts.

  10. Happy mother's day. Stay strong for little Acorn so you can share this day with him/her next year!