August 6th, 7th, & 8th Update

Perspective is a funny thing – the smallest event can shift it and alter an entire experience.  I’ve seen it time and time again as a joyful event such as a wedding gets derailed by something unexpected.  So the question is what do you do when that unexpected thing comes your way? Do you take it in stride or allow it to ruin your precious moments?  I came really close on Friday to having an unexpected thing ruin what should have been a day of celebration.  Thankfully my 7-year-old is wise beyond her years.  Most of you know by now that Friday was the first day we were able to hold our sweet boy.  In order to do that they had to remove an arterial line from his belly button.  While they were doing that procedure we left the hospital to take Macy to her pediatrician and then to a friends.  We returned full of excited anticipation for the momentous milestone that had seemed so very far way just a few days prior.  Upon entering the nursery we were greeted by the sight of Wyatt trembling from drug withdrawal with a new IV line in his little head.  It was clear something unexpected had happened AND that the hospital had yet again failed to inform us.  When the nurse entered we asked what was going on.  She said very casually that Wyatt had experienced a round of seizures which were probably from the bleed in his brain.  This was the first time we had heard anything about the bleed and she was completely unprepared to answer our questions.  We pleaded, to no avail, for someone to come speak with us regarding the new information.  Informed that we were at the mercy of Neurology she went on to explain there was no need to worry they had given him his first bath after the seizure and he did well.  This was the point where I initially picked to jump the track.  Not only had they failed to communicate valuable information they had blatantly disregarded our repeated requests to be present and part of this “first” in Wyatt’s life.  It took some calming words from Keith, holding my boy, and encouragements from some of the most amazing people I know to pull the brakes on my crash scene.  Later that night we went to pick up Macy and I told her I needed lots of hugs and love as my day had been very bad.  A few moments later I showed her the photo of Keith holding Wyatt for the first time.  She sat there for a minute looking at the photo and then looking me in the eye said: “Now how it is THAT a bad day?!?”  Such truth spoken in pure innocence.  I was so wrapped up in what went wrong I was nearly robbed of something that I should be treasuring.  It’s all about perspective …

Saturday we were finally able to speak with Neurology and they filled us in.  At some point near the time of his birth Wyatt had a small hemorrhage in the gelatinous part of the brain that disappears in most term babies.  His was still a little jelly like and it ruptured.  At birth the brain isn’t fully developed.  The port that promotes seizure activities is and the part that controls them is not.  So – the bleed, which is not currently active, may be causing what they call reactive seizures.  Apparently lots of premature and or sick babies have them.  They control them with medication and monitor for developmental delays until the age 2 or 3.  Wyatt is not currently showing any signs of issues but we need to have the seizures under control to prevent damage or reactivating the bleed.  Not great news but certainly manageable.  The treatment for the seizures is independent from the hernia treatment and will not affect his progress or discharge in any fashion.   So we are now armed with information (better late than never) and ready to take the next step in getting our boy home.  Surprise! It happened late last night…they removed the suction portion of the tube running into his belly and said they would monitor his tolerance to his secretions.  If he did well, the tube would then be removed.

We arrived this morning to find that the tube was out! What a blessing to see his super sweet face without all kinds of tubes taped to him.  He has done well so far and if that continues through the night they will attempt to give him some food tomorrow.  They also lowered his pain medications again which means we are slowly inching toward the day we get to bring him home.  JOY! 

Big huge thank you’s to the church elders who took time out of their day to come pray with us and over our boy.  We love the outpouring of support that has come from our Quest community.  We also had visits from Lucy Letton, Ted and Mary Katherine Rice, Rich Bliss, and Scott Kelly.  We are so blessed to be surrounded by great people.

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One thought on “August 6th, 7th, & 8th Update

  1. Grateful for the update…have many friends who are covering all of you in prayer. Happy to hear he is tubeless.

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