That face! And an update.

We had another ultrasound yesterday immediately followed by a meeting with the neonatologist.  But before I get to that, look at this beautiful face.

It's a little blurry (they did not give me a CD with the images on it like they normally do so this is a scan of the printout)  but still, isn't she gorgeous? 

Rebecca does not like ultrasounds or echocardiograms and likes to move around a lot when they are being performed.  But luckily the technician was still able to capture this image of her face.

Now...the nitty gritty....

Rebecca weighed in at 2 pounds, 9 ounces.  That puts her in the 20th percentile for babies in their 30th week of gestation.  So she's still small.

And even though they could see a stomach bubble, just like last time it was empty.  Which leads them to believe that there is an esophageal atresia (which is an esophagus that ends in a blind pouch instead of connecting to the stomach) or a blockage of some sort in the esophagus.  They will not be able to confirm this until delivery.

Her waist is also measuring small which is another indicator that she isn't taking in any fluids which is another indicator of the esophageal atresia.

And there is more amniotic fluid surrounding Rebecca than there should be, which is yet again, another indicator of the esophageal atresia.

After the ultrasound, we met with the neonatologist.  She was a very kind doctor who was letting us know our options for treatment for Rebecca on the day of delivery.  She stressed that they would follow our instructions completely and do as little for her as we wanted or as much as we wanted in the way of treatment.

It's now up to us to decide what to do.  If she is infact born with Trisomy 18 (which the doctors are 99.9% sure of at this point) do we do nothing and let her die naturally or do we do everything medically possible to keep her alive for as long as possible?

These are hard decisions to have to make as a parent.

On the one hand, you want to give your child a fighting chance.  But on the other hand, you don't want to put her through any more suffering than necessary.

Yesterday we decided that we fall somewhere in the middle right of the spectrum of do nothing at all to do everything medically possible.

And that means as of now (and we can change our minds at anytime) the following will happen on the day of her delivery:

• A priest will be in the delivery room to baptize her immediately following delivery.
• She will be given oxygen if she needs it.
• If she is struggling to breath and the doctors think that she has more than a few minutes to live, they will insert a breathing tube after checking with us first.  This will be a little uncomfortable for her, but if it gives us hours or days with her, we consider it to be worth it.  Of course, inserting a breathing tube could also mean that at some point we have to make the decision to remove it.
• After she is cleaned up, she will be put briefly on my chest so that I can "hold" her while they are completing the C-Section.
• If it looks like she doesn't have much time, Dan will be allowed to hold her until she passes. If it looks like she's got a fighting chance, she will be taken to the NICU.
• Blood will be drawn to test her chromosomes to determine with 100% certainty that she has T18.
• A tube will be put down her esophagus to determine if she has EA.
• And here's where it gets real tricky.  If she has EA, and we want to treat it, she will be sent to Brenner Children's Hospital while I will have to remain at Forsyth while I recover from my C-Section. Even though sending her to Brenner's while I'm stuck at Forsyth is going to be so hard, if it seems like she's got any chance at all, we will most likely do this.  Otherwise, not only will she not be able to eat, she will most likely choke on fluids from her mouth and nose.  If we chose to do this, she will be taken to Brenner's within a couple of hours.

It was a lot to have to think about and deal with in one meeting but we were assured that we could change our minds at any point and they would do whatever we wanted them to do. 

We are going to set up a meeting with a pediatric surgeon to discuss the procedure to repair the EA to make sure we understand what is involved and the implications for Rebecca.

I have been struggling with what to pray for and about.  Of course, I am still praying for a complete and total miracle and that Rebecca be born perfectly healthy.

But at the same time I am a realist, so I also have a second prayer that if she is born with T18, that at least she be born without the esophageal atresia (which I believe would also be a miracle) so that we don't have to make the decision of whether or not to do the surgery which would mean moving her to Brenner's. 

And I continue to pray that Dan and I will have wisdom to make the right decisions for her and that we are able to have peace.