Please forgive the delayed communication. My goal is to post weekly updates on Baby Pearl from here out, so I’m sorry it’s been two weeks since the last one.
Praise the Lord, Pearl is nearly five weeks old! She continues to shock and amaze the Vanderbilt medical professionals and to bring joy and hope to her family. Recent developments in her medical care include the introduction of an ENT specialist. Not only has this doctor prescribed medicine and placed a nasal stint to help Pearl breathe, but he’s also advocating for her LIFE care. Up to this point, Pearl’s primary medical attention has come from hospice providers, and Eric and Ruth have been tremendously grateful for the support hospice has given. For so long, they anticipated saying goodbye to their sweet baby at any moment, so it made sense, as strange as it seems, to have assistance in helping Pearl die well. But now that she’s been alive for over a month, her ENT has referred the family to a pediatrician, a neurologist, and home health nursing care—assembling a team of professionals to treat Pearl as a child who’s future is life rather than certain, impending death.
Interestingly, Ursula Hennessey covered Pearl’s story in her http://www.ontheculture.com blog entry entitled “On doctors, faith, and the power of love.” Take a moment to read what she has to say about medical opinions in cases deemed terminal and about miracles like Pearl.
Pearl has grown a pound since birth and she is very healthy and more than stable; she’s even made strides in her eating habits—adding the occasional bottle to her tubing. Eric and Ruth are actually going through the first purge of Pearl baby things—she’s outgrowing stuff and that’s amazing!
The Browns are still adjusting to life with three kids. Needless to say, they are exhausted. Eric and Ruth try to sleep in shifts while covering Pearl’s feedings every three hours. Given her continued breathing difficulties, though, they rarely actually sleep soundly. As Eric recently tweeted, “No one here sleeps at the same time anymore. Ever. If Christ can raise bodies from the dead surely he can refresh bodies that are just tired.” Add to that new schedule the occasional evening when one or both of the other kids is up too—say vomiting or just bouncing off the walls—and meaningful rest becomes more than elusive.
While rest is the most significant need the family has, they also really could use a vehicle that would transport all of them at one time. Recently, this cause was championed by the fundraising site lovehoperevolution.org (LHR), but the family found that friends and family have been somewhat confused by the difference between LHR and the support efforts of this blog. To avoid that confusion, the LHR campaign has been closed after raising $810 toward the van. A big thank you to David Kiggins and LHR for their help. We are working out the details of how you can contribute further to the van cause and will update the support page here with developments.
Eric and Ruth are exceedingly grateful for your persistent prayers and celebrations of Pearl’s milestones. Please continue to pray for God to provide her medical team with wisdom and hope and Eric and Ruth with deep and meaningful rest. More generally, pray for the whole family to experience peace and joy even in their exhaustion. Let’s also continue to praise Him for Pearl’s life. What a miracle it is!