"Continue to Observe"

The neurosurgeon came in this morning. Then four other teaching faculty came by. The neonatologist checked on him. The nurses reported in. Everyone conferred. Here's the bottom line as it was read off to me from the doctor's (almost illegible) chart: "Continue to observe." So, that's what we'll do. Observe. Wait. Pray. Monday they'll do another head ultrasound to see if any CSF (cerebro spinal fluid) is building up on the brain. From my unstudied opinion, it doesn't seem like Paton's swelling on his back is getting any larger. And they haven't seen any CSF leaking from it. So, all is in a waiting pattern. He's feeding only from a bottle now, as they want to move him as little as possible. Tough to take a bottle with his head turned about a 90 degree angle! After all the neurosurgeons are paid off, I'm going to have to start on the chiropractor. :)

God has been good. Looking forward to praising Him tomorrow. Jen will stay here with Paton.

Miscellaneous Thoughts & Update

We're still waiting to see about the shunt. The neurosurgeons are monitoring the back closely, which continues to grow larger and more filled with fluid. But the head looks really good so far. So we're waiting. One doctor said, "We should probably know one way or the other in a couple of days or so."

The doctors said the spina bifida was near the L4-L5 level (4th or 5th vertebrae in the lumbar region). That's fairly low, which is good. However, they've seen some limited movement in his upper legs, but almost no movement yet in his lower legs. So his function is basically consistent with an L3 lesion. Day by day, and with each passing moment, God gives grace. This is only the beginning of a long, long journey. But, we pray it will be a journey measured out by God's grace.

Our hearts go out to some dear friends who buried their newborn baby today. Karla was our ministry secretary, and their baby was due 2 days after Paton's C-section. The baby died Monday, and they buried her today. We cried when we first heard the news. We pray for them to come to know something more of Amazing Grace. We love you, Karla & Ernesto.

One last thing -- we have a friend named Scott who's been such a blessing. He was born with spina bifida some 40 (?) years ago. He's emailed a couple of times -- such encouragement, such an upbeat, positive testimony of God's goodness and grace. "The comfort wherewith we ourselves are comforted of God." Thanks, Scott.

Jen's staying here in the Ronald McDonald House tonight. I plan on going home to see the kids (& maybe help give Grandma a break). We'll update again when we know anything new. Good night.

Surgery???

Well, when we came to see Paton this morning, the nurses were beginning to prepare him for another surgery -- to put in a shunt to drain the fluid from his head. They had taken him off feedings (poor hungry fella!) and were starting to prep him to head to the OR later this afternoon. The reason for the concern was the build-up of fluid at the site of his spinal lesion (see picture). But after a while the neurosurgeon came in to evaluate, and decided to hold off on the surgery for the time being. A shunt is a lifelong thing (generally), with its own set of complications. So they are going to watch him a little longer. They're going to reevaluate him this afternoon with a head ultrasound. If the area on his back continues to swell, or if fluid builds up in the ventricles in his brain, they'll go ahead and shunt. Jen's thrilled to be doing a few breastfeeds with the guy. And daddy ... well ... gives him a great bottle! : )

He's Awake!

We had a great time with Paton today. Got to hold him for the first time! We were also able to feed him. Grandma Neal and Terry came to visit him. They were very impressed, of course! : ) His legs have straightened out somewhat. It's hard to tell yet, but we haven't seen a lot of movement from them. They'll be doing a head ultrasound tomorrow to check for hydrocephalus. Also, they're somewhat concerned that he's having a lot of swelling on his back where they did the surgery. The surgeon will be coming by tonight to check it out. Jen's getting released from the hospital tomorrow, so from now on we'll have to make the trek from home every day. Thankfully, this is a wonderful hospital. They have lockers for her stuff in the waiting room, and a "Ronald McDonald House" right in the hospital with drinks and snacks, a nice living area where folks can relax, and even bedrooms you can request for naps during the day. It's really a very nice "home away from home." So we move into the next stage of living with our new gift from God. We've been so, so thankful that Grandma flew all the way out here from NC just to help with the kids for a week -- she's fantastic! It makes us feel so good to know they are in such good hands. Thanks again, all, for your prayers!

Wonderful Ending

A wonderful ending to a good day. We spent a long time with him tonight while he was awake. Weighed him again (about the same). Got him to open his eyes (a crack!) Rejoiced at the good bladder function so far. Discussed that wonderful new-baby smell (when they're clean :) Good night, fella. See ya in the morning.

Together for the First Time

This was Jen's first time to really spend time with Paton. It was sweet enjoyment to be all together. I wish Hannah, David, and Charis could be here. This afternoon he'll have his first cath, and tomorrow his first bottle feeding. Jen said something like, "Seeing him makes all the difficulties seem insignificant."

Out of Surgery

Paton had surgery this morning to close up his back. We praise the Lord and thank you all for your prayers and comments. They really mean a lot to us. Everything went well, and he is resting in recovery. The plastic surgeons did not have to get involved, and they were able to use the skin to cover everything up. They are going to keep an eye on him for infection. At this point, he goes back to NICU for a while. The next big thing they'll watch for is the build-up of cerebrospinal fluid on the brain (called hydrocephalus). 80-90% of spina bifida kids develop hydrocephalus, usually after the spine is closed up. If that happens, they'll do another surgery to implant a shunt in his head which will allow the fluid to drain through a small tube inserted under his skin. The tube will end in his abdominal cavity, where the fluid will be absorbed by the body. So, we wait and see. I guess a lot of his life will be waiting to see. Isn't that true for all of us? Wait on the Lord.