From Presbyterian to UNM

Good morning, friends. 

It is Day 3 now, Wednesday, but all the days are blurring together in our minds.
We are running on very little sleep, but we were able to get in four hours interspersed last night and just now woke up.  Hopefully this will be coherent.

So much has changed since I wrote yesterday, and I am sorry I was never able to update last night.  Everything that happened after I wrote that last update is something of a blur.  I will try to remember it as it occurred.

We received the results of the MRI not too long after we published the last post.  The neonatologist came up to our room along with the pediatric neurologist.  They sat down to explain and quickly showed us the images from the MRI.  Like the images in May on the ultrasound of his heart, it was immediately obvious to us that the results were not good.  A large portion of the right side of his brain was covered in blood...along with two or three other portions of his brain.  We were told then that he has had multiple strokes and was now facing possible neurosurgery.  The heart surgery would have to wait.  And we were waiting now too...waiting for the hospital's neurosurgeon to tell us what to do next.

This all seems like an eternity ago.

So, we went down again to be with Jude...as he was now done with the MRI and was completing an EEG.  We got to be with him for a little while, but we were soon informed that Dr. Houston, the neonatologist, wanted to see us.  In her office, we learned that the neurosurgeon had said that he would not perform the surgery.  The additional problems (heart defect and Trisomy 21) along with the fact that he was a baby scared him too much.  So, our only option at that point was to transfer him to another local hospital at the University of New Mexico.  While Pres is known for its expertise in cardiology, UNM is better at neurology.  They had a pediatric neurologist. We knew pretty quickly what we desired to do.  We just had to hear back from UNM that they would receive him.

When we got a reply from the UNM neurologist, the question he had for us was this:  "How much do you really want to put your baby through?"  We were being presented with two options:  Transfer him to the NICU at UNM where they would evaluate him and then determine whether they would go through with surgery or keep him at Pres and "make him as comfortable as we can."  So, we were deciding whether to give him a chance at life or not.

Even as I write this, I am crying.  I can't put into words how hard it was to even come to the conclusion that this is what they were asking.  I didn't sleep at all Sunday night due to laboring.  Monday night was really short, much of it spent with Jude.  And the drugs aren't helping either.  I am so glad that Brandon is here to walk through this with me.  He has been wonderful.

So, we decided we wanted to give our baby every chance at life.  We decided then to transfer him to UNM, unsure if they would even be willing to do the surgery.  We stayed in the NICU with him until the transport team came to get him.  I couldn't leave because I wasn't yet discharged and was still in a lot of pain.  Brandon was going to stay with me for a little while and then go over there.  Instead, a doctor with the UNM team suggested he ride over with them now...as she said he was looking pretty bad and might not survive. 

So, Brandon went with him, and I was left at Pres.  It was incredibly difficult to be separated like that.  Soon after, good friends came to be with me and were so helpful.  They helped me prepare as we were able to accomplish a rushed discharge.  So, after a long process, I was able to get out of Pres and be driven over to UNM to be with my baby and my husband. 

We are here now...and there is so much more to tell about it.  But, we were just informed that they are doing rounds at Jude's bedside right now.  We're going to head over there.  I will write back more about the rest of last night as soon as I can.  Thanks again so much for all your prayers and love and care.  We love you guys!