So yesterday I laughed, today was the day for tears.
Its been a hard day for me (probably due to lack of sleep - afterall, these hospital beds are no substitute for a real bed) and sitting here with so much time to think can have detrimental results (having a computer with a direct line to Dr. Google doesn't help either).
Today the fear and panic has settled in. We're back where we were 3.5 years ago, possibly making a decison between bad or worse as to what to do with this pregnancy. The 1st time around it was the wrong decision (not saying there was a right one, just that the one we chose was the wrong one).
With Payton, up until yesterday it was clear that the safest place for her was in my belly. Today, that's not so clear. In fact, being inside me may be the worst thing for her. But delivering Payton now isn't good either.
Prematurity coupled with a Diaphragmatic Hernia significantly reduces the survival rates. One study I found shows that survival rates for full term infants with CDH are 73.1%. Survival for preterm infants (less than 37 weeks) is 53.5%. That's an almost 20% gap.
If we take that average (knowing Payton's 33 week status is probably a bit on the early side) we've been bumped from 70-80% survial to 50-60% survival (though admittedly the drop wouldn't be linear but its all I have to wrap my analytical thought process around).
Lower survival rates also increases long term disability rates. Of course the biggest concern is that Payton won't be able to get enough oxygen to her brain and in turn may suffer various affects of brain damage.
Its also likely that the lesser complications (like hearing loss) are more likely (so those who want to be part of our lives better start brushing up on their sign language :)).
We had our 1st of frequent ultrasounds today that only measure amniotic fluid and blood flow (doppler). No consult with the doctors yet but from what I can see, the amniotic fluid appears normal (good sign) and my previous assessment of the Placenta Previa was incorrect. Its completely overlying the cervix still by a few cm's (apparently I have no idea where the cervix sits relative to the placental). It hasn't made any positive progress as I previously thought (either that or it keeps moving around to screw with my mind).
The remaining mystery therefore is the blood flow in the cord/placenta. They especially focused on blood flow around the cervix assuming Paytons possible IUGR is due to the placenta tearing away from the bottom of the uterus during the last couple of bleeds.
Since we're now dealing with so many factors that at any moment could result in a unscheduled delivery, I promised a few people that I would update daily, even if its just a confirmation of a very mundane and boring day. That way, if you don't hear from us, it means something has happened (not necessarily birth) but something, even just another bleed as another bleed would send me down to Labour and Delivery for copious hours of monitoring with no computer access for updates.
I'm hoping that Dwayne will help out on those days since he's managed to perfect the mobile uploads via his phone.
I'll be providing a further update today when we hear what the doctors have to report with our lastest ultrasound.
2 comments:
Hi Renee,
Hang in there! And it is okay to laugh or cry or whatever you need to do right now.
Although hospital time sucks, trust me I know :o), you are in the best place and in good hands right now. And please try no to think of too many "what ifs"... yes I know easier said than done, and yes I should take my own advice, but because it is unknown you will drive yourself a little crazy.
If it helps, Mattiaus' doc was never able to get an acurate measurement of his stomach and he was also born at 36 weeks (with my water leaking for 3 weeks already) and he also had a low head-to-lung ratio and the liver was up and I am sure I am missing a whole bunch of other things that stacked the odds against him. But he made it. As you know we are still dealing with a lot of stuff but I can't change any of it so I just have to accept it and this is our "normal". Please try not to worry about what may come, like possible hearing loss or any of the other issues that CDH babes may endure. If you have to deal with it you will and it will become your "normal". And your love for Payton won't change. With Mattiaus and his oxygen, I don't even see it on his face anymore. I look at him and think he is such a strong little boy with such courage & who is so very loved by everyone who meets him.
We are sending many, many good thoughts & prayers for mama & baby!! I will check your blog for updates (and thx for the email this morning)
Take care, Angela & Mattiaus
Thanks Angela so much.
I'm pretty well prepared mentally for the hospital stay. I 'think' I'm pretty well prepared for the NICU roller coaster.
What frightens me the most are these 'choices' when the picture isn't clear cut.
Is she safer in my belly or safer being delivered early. No clear cut answer and again, previous experience hasn't been in our favour when similar choices had to be made.
As mentioned, I just want her to have the best chance at to fight. Anything beyond that I'll take as it goes.
Many premature CDH stories out there and they give me comfort (much like Mattiaus staying put for another 3 weeks :)).
Thanks again.
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