Saturday, April 21, 2012

Oliver update #4 - an ongoing puzzle for his doctors



Oliver is now 4 weeks old (wow, a month already!), or 39 weeks, just seven days til his due date.  I'm driving again and that has made it easier to be at the hospital more, but I am still very easily fatigued and find that I have been succumbing to weariness more often.  We know that the end is in sight for Oliver to come home, but of course we won't really know just when that will be until it is happening.  So, here's the report:

  • GAINING WEIGHT:  Oliver is now 6 pounds!  He had stopped gaining weight for a few days so his milk is now fortified and he has responded well and started gaining weight again.  (They first spoke of adding a high calorie formula or corn oil to his meals, but I asked if we could use another more healthy and beneficial oil, so his doctor called me a few hours later from the grocery store and we settled on a gourmet grape seed oil!  Hopefully he won't turn into a gourmet food snob at too young of an age.)
  • HIGH BLOOD PRESSURE:  His blood pressure has been steadily rising over the last few days and his doctors are trying to determine if this is due to his heart conditions or because of his problematic kidney (which could be signaling to his body that it is not having enough fluid flowing through it, and then the body responds by increasing blood pressure to increase the fluid flow).  They ordered another echo cardiogram which has shown that his leaky valves have resolved (good), that the ventricle walls have thickened even more (not good), but that the overall functioning of the heart is still normal (very good).  The doctors suspect that his heart is thickening as a response to having to work harder against the high blood pressure.  The medicine Oliver has been taking for the WPW condition is also used to lower blood pressure, so they have increased his dosage slightly to see if that will help.  We are also now waiting for results from a test that will tell us if his kidney is sending bad signals to his body and causing the high blood pressure. 
  • LEARNING TO SWALLOW:  As the nurses have been working with Oliver and me on nursing some concerns about his swallowing have come up - he will often hold his breath, cough, and/or have a severe drop in his heart rate as he tries to suck, swallow, and breath at the right times.  On Monday he'll do a swallow study where they will take x-ray-like pictures of his mouth and throat as he drinks his meal. 
  • On Monday he'll also have an MRI on his brain.
  • We still have yet to hear back from one of the more in-depth genetics tests.     

He is generally still a very sleepy baby, but the times he is calmly awake and alert are slowly increasing.  I adore the times I have with him when his eyes are wide open and he tries to pick up his head and look around.  He loves being held and usually hates having his diaper changed, but I enjoy his moments of fussing as an encouraging sign of vigor. 

1 comment:

  1. Oliver is so handsome!! Thank you for the courage to post what your family is experiencing right now. Even from far away, I am sending positive thoughts and prayers everyday! Much love to you all <3

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