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Uncertainty is the refuge of hope

posted Jun 28, 2013, 6:16 PM by Melissa Burke
The last 2+ years at Bain I have spent thinking almost exclusively about how individuals and organizations deal with change.  If there is anything that work has taught me, it is that uncertainty about the future causes disruption - significant disruption in most instances. So much that it's often hard to get on with the normal course of business because the hours are filled wondering what's next? how will this impact me? how will this change my life? 
As I reflect on the almost 4 weeks we have now spent in the NICU with Peter, I can't help but draw on some of the parallels. The challenge James and I face is the question, when will we have some certainty so we can move forward from here? Unfortunately, the answer for the type of HIE injury that Peter sustained is likely not for a long time. When the brain is concerned, the doctors simply don't know what the future holds for him. We have been presented with a range of outcomes from Peter will grow to be a completely normal boy to he might not survive until his first birthday. The lack of certainty has us reeling. We can't help but ask the doctors daily about probabilities and likelihoods.  We are searching desparately for something to anchor to.  But what I have come to realize over the last many weeks is that there is some hope in the uncertainty. With Peter, anything is possible and we have to continue to focus on all the positive strides he is making and envision a world where he has conquered this difficult beginning. It's a tough battle but we know he is a fighter and his brain is continuing to work in overdrive to make it back.
We have now been at Duke about 4 days and have definitely felt the love from the many pediatric speciality groups that have paid us visits from across the hospital. Sometimes it feels like a revolving door, but we have to be thankful that there are so many great minds trying to help him.  In terms of status, here is the latest we have observed:
  • His suck/swallow is still largely absent but seems to be making some strides - we have started to see him increasingly sucking his bottom lip and he has made some pulls on our fingers the last couple days
  • Neurologists today gave a good report on his tone, alertness, other core brain stem reflexes (gag, cough, moro) - they actually said his clinical picture was promising.  However, they also said that they did see some residual abnormalities on the 2nd MRI in the thalamus, basal ganglia, and posterior limb (interestingly, the other neurologist several weeks ago didn't point these out) that were consistent with the HIE insult but seemed to be much improved from the 1st scan. Again, they were hesitant at this point to name a long-term prognosis but seemed hopeful
  • He passed his vision and hearing tests
  • ENT evaluated him and didn't think a tracheostomy was likely in his future - something we had been told was a distinct possibility
  • His cough seems to be growing stronger so he is able to resolve his airway blockage for the most part on his own vs. needing to be suctioned
  • He is now up to 6 lbs, 12 oz (up 10 oz over birth weight)
  • He is off the cannula and breathing freely on his own - so nice to get some of that tape off his face!
So there are some bright spots to celebrate. Still no idea when we will be able to bring him home but we are trying to remain patient.  The lingering repiratory issues are likely what will keep us there for awhile so continuing to pray that he gets over those soon.  Still 6 days left til his official due date of July 4th...
Our little froggie
All snuggled up and looking at Daddy
Wearing an eye mask after his eyes were dialated for an eye exam -
one of many exams he has endured over the last several days