Oliver update #5 - Swallow study and MRI results

Joel and I met with one of Oliver's doctors and one of his nurses today in a parent conference to review his condition and discuss what will need to happen before he is discharged.  The primary reason Oliver still needs to be in the hospital is because of his high blood pressure.  His doctors are hoping that a higher dosage of his current heart medicine will help with this and we'll see how it looks over the next few days.  He is still having occasional apnea (when he forgets to breathe) and bradycardia (when his heart rate slows way down) events, so we'll probably be sent home with him on a portable home monitor that will send an obnoxiously loud alarm through our house if he stops breathing or has a severe drop in his heart rate.  We will also probably be bringing him home with his feeding tube (see below) and a long list of follow-up appointments with the cardiologist, nephrologist, geneticist, occupational therapist, and of course our regular pediatrician.

• Swallow study results: The mechanics of Oliver's swallowing appeared normal!  Yea!  The therapist now attributes Oliver's difficulties (holding his breath, dropped heart rate, and a bit of choking) to his low stamina.  This means that we will continue working with him to learn to nurse when he is awake and alert but we'll stop as soon as he shows signs of fatiguing and then the remainder of his meal will be given through his feeding tube.  We expect to continue this combination of nursing and gavage (tube) feeding at home after he is discharged until he has enough stamina to nurse for all his meals.
• MRI results:  The MRI study was conducted on his brain to follow up some concerns about Oliver's ventricles appearing enlarged in the ultrasounds before he was born.  (Note: these are the ventricles in the brain that allow the spinal fluid to flow in and around the brain, not the heart ventricles, which in Oliver's little body also happen to be thicker than normal.)  The MRI confirmed that the ventricles in Oliver's brain are indeed mildly to moderately dilated.  The doctor believes that, in Oliver's case, this is due to some part of his brain being smaller than expected, and that the lack of tissue allows the ventricles to take up more space.  We are not able to tell at this point what part of the brain may not have developed correctly; we'll just have to wait and see how he grows and learns.  The great news from the MRI report is that all other aspects of the brain (the ridges, size, density, etc.) look completely normal!  Allelulia! 
• We're still waiting on a few more genetics tests. 

So, we still don't know what Oliver's full capabilities will be, but we are encouraged by both the study results and the fact that as he gets older he continues to grow in alertness and curiosity.  He tries so hard to lift his head up already (see the photo below)!  We hope to all be home together as a family soon. 

I am exhausted, but the Lord is good.