It's been awhile since I last posted and much has taken place in the meantime. The one constant joy in the last 8 months has been Gareth. He continues to grow and learn, a light in the midst of our own personal darkness.
I'm loathe to go into too much detail right now as the pain of our family's present circumstances are jaggedly new. Some moments I feel as if I'm walking around in a shroud, a thick gray blanket that makes it hard to see the world around me. Some moments feel like an unending shriek of distortion, a painful and inescapable intrusion into the song of our life. And mostly, life is full of a new and quiet loneliness, an abundance of absence.
I've changed the name of the blog to "A Lonely Bird", a reference to the 102 psalm and its powerful and poignant images of desolation, grief and distress. It is an apt depiction of life for our family right now, a glimpse into the desolation, grief and distress that bind us so tightly. This blog will focus on that journey - the struggles, the moments of joy, the mystery of forgiveness, grace and covenants that cannot be broken. Of course, there will also be posts about Gareth and his progress.
You are welcome to join me on the journey.
Showing posts with label Hopes. Show all posts
Showing posts with label Hopes. Show all posts
Tuesday, December 6, 2011
Sunday, April 25, 2010
How Things Stand
Much has happened since my last blog post about Gareth, so I'll try to be thorough and concise.
--
Gareth went in for surgery on Thursday morning around 9:15. The purpose of the surgery was two-fold: to sever the connection between the esophagus and trachea and to attach the two disconnected portions of Gareth's esophagus. Cliff drew some pictures of this on his i-pod touch to illustrate for our family. They are below - the first one is how Gareth's esophagus was originally, and the second is how it normally looks (and looks now after surgery). Notice the top portion of the esophagus ended in a pouch and the bottom portion connected to the trachea.
Here was the difficulty - there was no way for the surgeons to know if Gareth had enough esophageal tissue to connect the separated portions until they were already in surgery. Thus, if there wasn't enough, they would only sever the connection between the esophagus and trachea and then do a procedure to begin the stretching of the esophagus. This would prolong our stay in the NICU, as Gareth would still be unable to eat and would have to wait for another surgery to connect the two ends - probably a month later. So, you can see how stressed we were when Gareth went into surgery; we wouldn't know what our future held until the surgeon came out afterwards.
At about 1:15pm, the surgeon called us into a conference room and gave us the wonderful news that they'd been able to connect the esophageal ends with no difficulty. He said, in fact, that our son has a great anatomy. That wasn't a joking phrase either - we'd only recently discovered that Gareth's condition is part of a syndrome that usually includes heart problems, renal problems, spinal malformations, missing bones or hand digits and even rectal problems. Fortunately, Gareth had none of these associated problems - we've heard our doctors on rounds say things like "oh, Gareth...he'll be fine. He only had one problem!"
So what happens next?
Well...blessedly...we just wait. Gareth's esophagus has to heal before we can do any oral feedings (whether by bottle or breast), so the surgical team will do a "dye test" on this coming Thursday to see if there are any "leaks" at the surgical site. If that goes well (and by well I mean, no leaks), then we can do oral feedings, his chest tube will come out and probably his central line. At that point, the goal will be to successfully feed, burp and soil diapers and then we'll be able to go home. That could be next weekend or it could be a couple of days afterwards, it's really up to the doctors. When we know more, we'll let you know.
Now we're just sitting around watching him improve. He is no longer receiving any antibiotics or pain medication, he has increasing amounts of breast-milk fed through his NG tube (a tube that goes directly to his stomach), his hep-lock ports in his hand and foot have been removed, his catheter is out as is his ventilator, he has stopped receiving photo-therapy for jaundice, and he can be touched and handled without gloves or protective gear. We still can't hold him (b/c of the chest tube), but that day is coming.
This last week has been at times glorious and horrific, terrifying and exhilarating. But through it all, we are thankful to you for all your kind words and prayers. It has been moving to stand by our son's bedside and know that the community of saints and the spirit of God is surrounding us.
--
Gareth went in for surgery on Thursday morning around 9:15. The purpose of the surgery was two-fold: to sever the connection between the esophagus and trachea and to attach the two disconnected portions of Gareth's esophagus. Cliff drew some pictures of this on his i-pod touch to illustrate for our family. They are below - the first one is how Gareth's esophagus was originally, and the second is how it normally looks (and looks now after surgery). Notice the top portion of the esophagus ended in a pouch and the bottom portion connected to the trachea.
Here was the difficulty - there was no way for the surgeons to know if Gareth had enough esophageal tissue to connect the separated portions until they were already in surgery. Thus, if there wasn't enough, they would only sever the connection between the esophagus and trachea and then do a procedure to begin the stretching of the esophagus. This would prolong our stay in the NICU, as Gareth would still be unable to eat and would have to wait for another surgery to connect the two ends - probably a month later. So, you can see how stressed we were when Gareth went into surgery; we wouldn't know what our future held until the surgeon came out afterwards.
At about 1:15pm, the surgeon called us into a conference room and gave us the wonderful news that they'd been able to connect the esophageal ends with no difficulty. He said, in fact, that our son has a great anatomy. That wasn't a joking phrase either - we'd only recently discovered that Gareth's condition is part of a syndrome that usually includes heart problems, renal problems, spinal malformations, missing bones or hand digits and even rectal problems. Fortunately, Gareth had none of these associated problems - we've heard our doctors on rounds say things like "oh, Gareth...he'll be fine. He only had one problem!"
So what happens next?
Well...blessedly...we just wait. Gareth's esophagus has to heal before we can do any oral feedings (whether by bottle or breast), so the surgical team will do a "dye test" on this coming Thursday to see if there are any "leaks" at the surgical site. If that goes well (and by well I mean, no leaks), then we can do oral feedings, his chest tube will come out and probably his central line. At that point, the goal will be to successfully feed, burp and soil diapers and then we'll be able to go home. That could be next weekend or it could be a couple of days afterwards, it's really up to the doctors. When we know more, we'll let you know.
Now we're just sitting around watching him improve. He is no longer receiving any antibiotics or pain medication, he has increasing amounts of breast-milk fed through his NG tube (a tube that goes directly to his stomach), his hep-lock ports in his hand and foot have been removed, his catheter is out as is his ventilator, he has stopped receiving photo-therapy for jaundice, and he can be touched and handled without gloves or protective gear. We still can't hold him (b/c of the chest tube), but that day is coming.
This last week has been at times glorious and horrific, terrifying and exhilarating. But through it all, we are thankful to you for all your kind words and prayers. It has been moving to stand by our son's bedside and know that the community of saints and the spirit of God is surrounding us.
Saturday, November 22, 2008
Things to Accomplish
While lurking through my favorite blogs, I read this short and sweet entry. In that spirit - I thought I would copy it!
In ten years...
- I want to be the mother of at least 2
- I want to be the Senior Pastor of a church
- I want to be living in a house of our very own!
- I want to be working on a compilation of my sermons for publication
- I want to be looking into D.Min or PhD programs
- I want to be able to speak Spanish
What would you like to happen in the next ten years of YOUR life?
In ten years...
- I want to be the mother of at least 2
- I want to be the Senior Pastor of a church
- I want to be living in a house of our very own!
- I want to be working on a compilation of my sermons for publication
- I want to be looking into D.Min or PhD programs
- I want to be able to speak Spanish
What would you like to happen in the next ten years of YOUR life?
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