Rambles

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 goner...so 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?