Monday, June 13, 2011


28 weeks + 2 days, 11 weeks + 4 days post rupture, day 34 at my parent's place.

I'm scared and sad tonight, not for any particular reason (other than the obvious), so I thought it might help if I write it all down. So sorry in advance if this post is kinda ramblely...

I got a text message from Brian tonight after he got home stating that I have (or rather Acorn has) a fetal ECHO scheduled for this coming Friday at 8am. So this would be another (stressful) appointment in addition to our (stressful) regular Thursday OB appointment. At my OB appointment last week Dr. Eeyore felt I was 'ruining his protocols' because I, as a cardiac patient, had not had a fetal ECHO. They like to do fetal ECHOs on all maternal congenital cardiac patients because I have a slightly higher risk of having a baby with a heart defect, and it's nice to know this info prior to delivery so you aren't unprepared for what could be a sick cardiac baby. Statistically the general population has a 1-2% risk of having a baby with a heart defect, whereas I have about a 3-5% chance. So a higher risk for sure...but still not enormous.

I was kind of pissed with Dr. Eeyore for 'admonishing' me for not having a fetal ECHO. Um, hello, jackass, you were SURE up until a week or two ago that our kid was a why the hell would I have gone for a pointless fetal ECHO? Waste of time, energy and resources much? (I swear, sometimes doctors are so 'smart' they forget to be 'sensible'...I could write a whole post on this from a nursing perspective, but that's for another time).

Anyway, now that Acorn is technically 'viable' and I understand Dr. Eeyore's reasoning for wanting this information, I am still of two minds about going for the appointment.

First and foremost, I'm wondering how likely it is going to be that they will get good enough pictures of the heart for the scan to be useful. Since my fluid levels probably vary day by day, there is no telling what they'll be on Friday...could be enough to get good pictures...but likely not 'perfect'. When they did my anatomy scan they were able to see all 4 chambers of the heart (good!), but weren't able to see detail. On the repeat scan when I had the highest fluid level of 11, the nurse was able to see a detailed view of the right side of the heart (all normal!), but baby would not turn to show her the left side. So four chambers plus a good right sided view have been seen. What if we get there and they can see one side but not the other? It's not like I can walk up and down the hallways and jump around in order to get the baby to 'turn' (hello...low fluid levels, baby CAN'T turn, plus there is NO WAY I'm chancing walking around just so you can attempt to take pictures of my kid's heart).

On the other hand I wonder if an ECHO could give us any idea of how the lungs look. For example, if they see good blood flow to the lungs does that mean they are developing well? Could they give us an idea of how much chest space the lungs are taking up (hopefully showing normal amounts and therefore good lung growth)? I will ask about this at my appointment on Thursday, and it might be the deciding factor.

The other factors affecting my decision are purely comfort and stress factors for myself. 1) it's another early morning appointment and I don't sleep well prior to any appointment. 2) it could be a very long appointment and I absolutely cannot wait in waiting rooms if I'm leaking. The stress of that sends me through the roof. 3) If there is something that is 'ambiguous' in terms of bad news, ie: "well the left side of the heart looks slightly small...but we're not sure what that means, and it could be nothing"...the stress of hearing that might just break me. Everything is so 'unsure' at this moment if they add in a 'possible, maybe, but not likely, but it could be' heart defect I might just keel over. I have enough to worry about thanksverymuch. 4) it's ANOTHER round of medical people to explain my fucked up medical history to. Yes, I have a heart defect. Yes, I have a dead son. Yes, this pregnancy didn't go quite as we'd hoped. Yes, I know my fluid levels aren't normal...and so on and so forth. I'm tired of feeling like a freak. 5) the clinic where they do the fetal ECHO is at the children's hospital where I work. Not only that, it's DIRECTLY across from the unit where I'm on my most recent leave of absence from. There is a large possibility I'll run into someone I know. "Why yes, hello colleague that I haven't seen in months, I am still pregnant...yes, things are still dicey...yes, I'm being pushed around in a wheelchair in hopes of preventing amniotic fluid from leaking out all over the floor...hope you have a good day too!" Awkward.

However, in the good news column, one of the moms on the pPROM message board that I follow had her baby today at 29 weeks and 4 days after being ruptured for 8 weeks. Her daughter is doing well so far and is on CPAP room air (no added O2). If that's what Acorn's first day is like, I will be THRILLED! It doesn't mean you're out of the woods respiratory wise as baby's often have a bit of a 'honeymoon' period when they first emerge, but it's definitely pointing in the right direction in terms of lung growth. I hope her daughter continues to do well. So, mood upper.

But then, of course, I had to go and scare myself and read the abstract of a study conducted at the NICU where Acorn will (hopefully) spend a short and uneventful stay. It stated that while pPROM outcomes have improved, pPROM babies generally have more complications than matched cohorts (ie: other babies born at the same gestational age). These complications include brain bleeds, retinopathy of prematurity (potential for blindness), and chronic lung disease. Definite mood downer.

I'm just so afraid of what is going to happen. It sometimes seems unbelievable that we could possibly have a good outcome. I've seen way too many of you out there in babylost land over the past 14 months who have had perfect pregnancies, no complications and then like a punch to the gut the baby is dead for no good reason. Sadly, Acorn has every reason NOT to survive, not to thrive, not to do well. And part of me is SO proud of Acorn for doing so well so far...and another part of me is so afraid for what he/she, and we might have to face. How do you get this far, have this much 'hope' tossed your way, only to fail to get your 'miracle' (again). It's so overwhelming when I think of everything my body and Acorn have had to face and what might still be to come.

I just hope whatever luck (fate, karma, God?) has kept us going this long, has and will continue to stay on our side and help good things to keep coming our way.

Did you ever feel pressured into what you felt was 'unnecessary' or 'too stressful' medical tests, either baby related or otherwise? How did you resolve the issue?


  1. It's ALREADY causing you this much stress?!? DON'T GO. Reschedule for much later, or just don't go. I guess ask questions about it Thursday, but if they don't make you feel more inclined to go, then why go?

    If you knew they could visualise what they needed to see to let them know if Acorn will have any special cardiac needs at birth that would be one thing - but it doesn't sound likely. Probably they won't be able to see any more than has already been seen, so why go?!

    How does your husband feel about it? Can he be the one to tell your doctor you're not going and cancel the appointment (if that's what you do)?

    It just sounds so stressful to me, and coming the day after you'll be out and about for another appointment doesn't sound great either.

  2. Can you phone the place where the scan is supposed to be done, explain your situation, and ask them if they think the scan can provide any answers? I know it's a bit unusual, but so is your situation! (I promise to shut up now - I'm just really upset on your behalf!)

  3. I dont know if this will make you feel better but I lost my first son (stillbirth) after having 2 miscarriages. It was AWFUL. I then got pregnant the fourth time and had a placental abruption at 31 weeks 4 days BUT I made it to the hospital in time, which is where I stayed until they induced labor at 36 weeks 1 day. I'm now staring at my sweet month old baby boy. My point is, miracles happen. I know that now. Even under the most dire of circumstances. I hope you get your miracle too!

  4. I don't have much to say, just that I'm always thinking of you and hoping, hoping, hoping.

  5. Like someone else said: then just don't go. Postpone it until you either feel more comfortable with the idea or, if after you find that you have more fluid accumulation, it is more probable that you will get a better "picture". Weigh the chances between Acorn having a cardiac abnormality vs you leaking...
    Never let the Dr. make you feel guilty. Like you said, he didn't seem very supportive or interested until very recently. Maybe he should be more concerned in getting an image of Acorn's lungs. Isn't that a bigger problem? Good luck! Thinking of you...

  6. I don't have too much advice on the ECHO. I always lean towards as much knowledge as possible. But I can completely understand your reasoning on not wanting it. Perhaps you could postpone til you feel more comfortable with it, like a PP said.

    I'm just so thrilled for you that you've made it to 28 weeks. That is a miracle in itself. Third trimester! I get a little thrill with every new post of yours with new dates at the top. Hoping for you and Acorn and Acorn's lungs every day.

  7. I echo what most are saying in that, listen to have thus far and look at your fab results. I'm sorry, I know you are having a low day and I don't want to seem too cheery and somehow make it worse for you.

    Look for a compromise...schedule it for 2 weeks from now on the same day as another appt. The thought of having to leave your house, your saftey zone, 2 days in a row seems like too much, especially since that would only increase the chance for your fluid to be low (after a full day of out-of-bed activity) and therefore another unsuccessful scan.

  8. I agree with the others that if you are too stressed about leaking or them not even being able to see anything then maybe you just shouldn't do it. Or like what T said and just do it on a day you are already coming in for another appt so you don't have to risk the chances of leaking fluid twice.
    Thinking of you and Acorn...and so happy you have made it to 28 weeks!