SamanthaStein

Since my original introductory post a lot has happened. Between numerous doctor and hospital visits, we have been riding an emotional rollercoaster: being elevated just to come screaming, speeding down to another bump or bend along the way.

Today we were taken for a pretty alarming turn.

We are currently at 28 weeks gestation and have officially entered our last trimester. What I've been describing as the honeymoon phase, where we were blindly optimistic, has come to an end, and with time nipping at our heels, our feet are now hitting the ground firmly as we try to stay ahead of and on top of things.

At first we felt we had received some really fantastic news.

Acknowledging, the fact the LHR is merely an indicator but not a guarantee of how well our son will do when he is born, as of Monday we jumped from a LHR of 1.06 to 1.6. This was very exciting and considered a huge improvement.
We also received our MRI results over the phone not too long ago (85% of his lung volume was recorded at 22 weeks), which put Jackson in the 'favorable outcome group' according to our surgeon. Yipee! And the amnio came back without any additional findings which was a relief as well.

Today, we had a check up with our obstetrician which was also positive. I gained 9lbs (which was a little bit more then I should have, but who's counting), our blood tests and glucose test came back okay, and overall everything seems to be progressing nicely. His heartbeat is strong and his growth and positioning are good too.
On our way out, our OBGYN provided us with a paper copy of the MRI (which we hadn't seen yet) and sent us on our way.

We left the hospital feeling like all things considered, things couldn't be any better, but when we got to the car things came crashing down.

I read over the MRI results as we began our drive back home and was shocked to read several findings in their impressions that were never mentioned to us.
First, we had been told that the stomach and bowels were herniated; when according to the MRI portions of the the left lobe of the liver are herniated as well. Having been explained that the more organs involved in the herniation, the worse the prognosis, this was upsetting off the bat.
Second, it noted the presence of "hypertelorism" at the occular level. I had to google what this meant because the MRI was written with 'fancy' medical terms, and we were alarmed to learn that this meant our sons eyes and pupils are farther apart then they should be. (The extent of this is not described- so we do not know how severe or mild this issue actually is).
And third, the MRI also describes a dilatation of renal collecting systems (which again I had to look up). From what I understand, this has something to do with blockage or kinks in the tubing that connects the kidneys to the urethra. It is noted that sonographic follow is advised for this issue and again no further details are listed.

Finding out about these additional issues by reading the MRI results on our own was devastating. How could all of the medical personnel we meet with have forgotten to tell us about the additional findings? We felt betrayed and now wonder to what extent we are really being informed about his conditions.
Needless to say, I have left a message with our pediatric surgeon to discuss what we've read and to hopefully get a better understanding of what extra obstacles our son will now have to overcome.

I think the worst part about this is that with less than 3 months until his arrival, we were finally getting a handle on our emotions and had moved past the initial shock phase of his diagnoses. These new findings basically put us back in the dark and has filled our heads and hearts with much more uncertainty and fear.
I feel like we've spent the passed 2 months preparing for and informing ourselves the best we can about CDH, which will surely be his biggest obstacle, but now we have about 3 months to add two more defects to the list.