Stroke Clinic and Miracles

Wesley had an appointment today with the "Stroke Clinic" at Children's Hospital.  They do clinics for various issues kids have where parents get to meet with a team of doctors all at once instead of explaining the same things over and over to each doctor separately.  Today was with a Neurologist, Hematologist, Physical Therapist, Research Specialist, and a Social Worker.  They honestly didn't have anything much to say.  They glanced at his MRI images from December and looked at his developmental progress.  They were impressed with how much he has advanced since they saw him 2 months ago so that was encouraging.  They are doing some tests but gave the impression they didn't think the tests would reveal anything.  They drew 6 blood samples (14mls of blood out of a little tiny baby!!) to test for 5 different blood clotting disorders and 1 other disorder that causes holes to form in the brain (they think this one is a long shot but worth testing for).  I don't know what to hope for when they do testing anymore.  Of course I hope that he doesn't have some horrible genetic disorder or disease but at the same time I am tired of every test result coming back normal even though he obviously isn't normal. I'm impatient for some answers.

Today we also agreed to be part of a research study they are doing.  I've been frustrated when I do research online that a lot of studies that I find are outdated by 10+ years.  Many medical advancements have been made recently, like the body cooling that Wesley did, and there is little data about the long term effects of those advancements.  I read a study yesterday that was published in 1997 about stillborn babies that had been resuscitated.  Out of the 10 babies in their study that had Apgar scores like Wesley's (0 after 1 min, 0 after 5 min, 1 after 10 min), 8 died and the other 2 were "severely disabled."  I don't think that will be Wesley's prognosis but I wish there were more recent studies for me to read and possibly be encouraged by.  All that to say, we agreed to be in their research study in hopes that other parents and doctors will have more recent data to analyze.

We won't be going back to the Stroke Clinic until August.  It becomes a big waiting game for so much of this.  Waiting for test results, for followup with doctors, for any sort of answers...



I've had one realization stuck in my head for the last few weeks: Wesley was stillborn.  I knew that he wasn't breathing and had no heartbeat when he was born but for some reason I never connected that to being literally dead.  My baby was stillborn.  I'm not sure I ever even saw the possibility of him not surviving while we were in the hospital.  Yes, I was terrified when they took me in for the c-section and I was desperate to see him when I woke up from anesthesia but I never doubted that he would be alive.  I carried him to full-term, of course he would be okay.  I thank God for the miracle that he is today.  He was born dead and now is smiling, cooing, playing, and developing.  It's incredible how far he has come.  I so often get frustrated or discouraged that I don't get to experience "normal" parenthood and Wesley doesn't get to have a "normal" life.  In reality, we are all the more blessed because everyday we are witness to the miracle of his life.