"...We will be talking to our pediatric cardiologist again tonight after he and 14 other doctors and 3 surgeons have their "conference" in which they review all of the cases. We are hoping that Samuel's will be reviewed, but it was a late entry and we are not sure. In short, our pediatric cardiologist said that the results of the discussion were favorable to us, but it is hard when you have had six different diagnoses and when so many questions remain unanswered to have confidence in the most recent conclusions. Our little Samuel's heart remains a mystery. Our pediatric cardiologist told us before Samuel was born that the echo that he received after he was born would give us 100% confidence in the diagnosis. Especially with that in mind, it has been so interesting to see a gathering of experts be so confounded." (email Bryan wrote on Aug. 3)
"We would sure appreciate your prayers over the coming days and weeks. We don't know what is ahead of us, and we know that the outcomes for which we pray are not guaranteed. That said, we do know that God is with us. We know that He is good, gracious, and kind, that He loves and cares for us and Samuel, and that He never fails. Thanks for your prayers and support along the way. They are greatly appreciated." (email Bryan wrote on Aug. 4)
"We are doing alright. Samuel is in the CICU at Egleston and has been here since Monday. The doctors (I think we've seen 12 of them so far) are scratching their chins over Samuel's heart and don't really know exactly what's going on. We learn a little each day, but there are still some things that elude them. Most likely surgery is on the horizon next week, but they're not sure. We have had many diagnoses. He is also having trouble with his lungs and is on a ventilator -- one doc said they look like a baby born at 27 weeks. Good thing Samuel didn't come at 35 weeks like we feared he might! I feel like it's been 2 weeks since Samuel was born; it's hard to believe he's not even 4 days old yet. Thanks for checking in. We are hanging in there and have plenty of laughs in our days sitting by Samuel's bedside. Again, we are thankful for a God who knows our son's heart even when doctors don't and for His peace and faithfulness." (email I wrote to my OB on Aug. 5)
"We're at the hospital now, sitting with our Samuel. Today we found out a bit more. We spoke with the surgeon, and he said, 'Samuel's case has proven to be more complicated than we expected. Lots of doctors are scratching their heads about him. His case is very unusual, so I can't give you any specific course of action or outcome, but we want to be cautious and "check twice and cut once" so we're going to continue waiting a bit longer.' We appreciate his approach. Their best guess is that Samuel will need surgery in the middle to end of next week. It looks like he will probably have a coarctation (narrowing of the aorta) which will have to be surgically repaired before he can come home. We are praying this does not happen. And he has a fistula which is very rare in newborns that probably needs fixing. In all likelihood, it would be one surgery but two places to enter -- in the side for the coarctation and from the front for the fistula. And they still don't know about the VSD (hole in the ventricle of his heart). His breathing is a bit better today. Part of his lung is collapsed, but it seems to be improving. Tomorrow they plan to take the lines out of his belly button and put them in his arm. This will allow them to start giving him breastmilk through a feeding tube instead of the mountain dew looking stuff he's on now.
"I am praying that he gets off the ventilator soon, that no coarctation develops, that there is no VSD, and that the fistula doesn't need surgery. In short, I am praying that he doesn't need surgery and that he can come home SOON! I am dying to hold him. When I think of another baby -- June (Matthew and Ashley's baby girl born on Aug. 2) or my friend's baby who is 2 weeks old, I start to cry when I imagine seeing their parents holding them. How I wish I could hold my son. In time, in time. I trust God, and most moments, I am peaceful and calm-hearted and even-keeled. THANK YOU for praying. There is no greater thing you could be doing. " (email I wrote to my friend Kristen on Aug. 5)
Looking back is a bit surreal, but everyday I am grateful for a record of Samuel's life, for something tangible to keep, and a way to remember. Though there were times I wanted to curse this blog, I am so glad we have it. I am thankful for remembering.