Here for a While

Paton's here for a while -- they said probably 10-14 days to fight the infection, and to reevaluate whether he will need a shunt.  A little fluid has returned at his lesion site.  If it continues, they will drain the fluid externally until they can put in the shunt.  So, it'll be a while.  But hopefully we can be sure at the end of this whether or not a shunt is necessary.

ICU Again

Well, we're back in the ICU again.  Actually, not technically the NICU, but the Level 2 Nursery.  The neurosurgeons drained the fluid from Paton's swelling on his back, tested it, and found out he has some kind of bacterial infection.  They are going to monitor him here for a day or 2 (or ... ?) and try to determine whether the swelling was indeed caused only by the infection, or whether it may be a build-up of cerebro-spinal fluid.  If it is, he may still need a shunt.  But at least, they're being careful.  His head continues to be free from hydrocephalus, which is wonderful.  We're going home tonight, and then coming back very early in the morning to try to catch the neuro.  We were home for a week and a day.  Hopefully next time it'll be longer! :)  I took a picture of the really little guy in a really big ER bed, which I'll try to post sometime.

To the ER

We just found out our pediatrician & TX Children's are affiliated.  Think of that -- doctors in sync.  We've never experienced that!  We take it as a blessing, though.  The Pedi has already contacted our neurosurgeon down at TX Children's, & he's going to be waiting for us down at the ER.  Paton's got some sort of infection.  We really don't know any more.

To the Doc

Little Pate's not been well yesterday or today.  It started about 3 in the morning the night before last -- extreme fussiness.  Also, it seemed that the swelling around his wound grew and became more sensitive.  We already had an appointment with the neuro scheduled, so we told him.  He did not seem concerned.  "Unless fluid starts leaking from it," he said.  Well, when we got home, Paton began running a fever.  Called the doc.  Almost went to the ER.  Then called neuro.  "Wait," again.  Then today the fever's been up & down.  Jen's on the way to the pediatrician, but just noticed leakage from the wound site.  Going to call the neuro.  Please pray for God's direction & wisdom.  Thanks.

Look Mom ... No Cast!

We went to the orthopedic center today to get Paton's boot/cast, and after examining him, the doctor said Paton does not have a club foot!  We couldn't believe it.  All the people in the NICU had said it was club, and we understood it would need casting.  But the doctor today said she thinks it is a common condition called metatarsus adductus.  She told us just to do some simple stretches with the foot several times each day, and that the condition would probably correct itself in time.  We believe this is an amazing answer to prayer -- thank you all.  We continue to be astounded.  At this point, they can only do a preliminary examination, since Paton cannot be laid on his back.  Once we are cleared for that, we will take him again to get an ultrasound of his hips to make sure there is no dislocation.  If there is, he will have to wear a special bracing system for a while.  We have been told again and again that our baby is an unusual case.  The OB/Gyn said Paton had the biggest sack on his back she'd ever seen.  Then after his surgery, the nurses said it was the biggest swelling they'd ever seen in this type of case.  Then the doctors were sure he needed a shunt, but ended up not.  And now, it seems they might have been wrong about the club foot.  So, we just take all this as God's gracious intervention.  We'd rest content if He'd chosen otherwise, and there are harder days ahead, we're sure.  But we are delighting in His blessings and kindness to the little fella.  Here's Paton and dad chillin'.

First Time in Church

Well, the little fella went to church.  He was surrounded by women!  Wish I'd had a camera.  It was great to show him to so many who'd been praying for him.  And Jen was thrilled to get out, too!  Today he has a visit to the pediatrician, who'll be his primary.  Later this week we see neuro and orthopedics.  The nurse measured his head circumference the other day, and everything looked normal.  We also have a visit to Early Childhood Intervention for physical therapy later this week.  It is so great to have him home.  I can entertain myself just by staring at the little guy.  I love it when he "smiles" in his sleep!

Paton and his Da

Home Sweet Home

There's no place like home. We left the hospital about 2 this afternoon. It was a beautiful, sunny, 74-degree, Houston winter day! Paton went home with a monitor and lots of doctors' appointments -- four just next week, along with 2 nurse visits in our home! Life will not be dull. There was great rejoicing -- Hannah at having her brother home, and David & Charis at the ice cream we got to celebrate. :) They're ready for more brothers & sisters, as long it means chocolate-dipped DQ cones. They weren't able to get us in with ortho at the hospital, so we will go in again next Tuesday for the boot fitting to help correct the clubbing of the left leg.

I've decided to continue to post here from time to time, although I'm sure it won't be as regular as it's been in the last two or three weeks. I'll probably mainly focus on Paton's journey, although I'll include general family news (and pictures, of course) from time to time. If you want to keep getting news, but not have to check the blog all the time, you might try to figure out how to "subscribe to" it with some kind of RSS reader so you can be advised when there are any new posts.

Through this all, we have sensed your prayers and seen God answer wonderfully. Thank you, thank you. Thank you to those in Texas, as well as many other states in the Union. Thanks to our friends oversees. Thanks to all. "The prayer of a righteous man can accomplish much." I am going to close this post with an excerpt from my journal from last November that summarizes my hopes and prayers for the little fella:

On another note, I think of you, my little Paton – yet unborn. I love you. You have spina bifida, they tell us. Our prayer has been, and will be, that God will show mercy and heal your soul. And that the strength of your soul, combined with the weakness of your body, will proclaim an irresistible message of grace to those around you. Son, allow the Lord to be mighty through you. Trust Him. Love Him. He owes us nothing. Health or “normality” is not our birthright, but rather condemnation and destruction are. Praise Him for any good thing He bestows as a matter of His undeserved kindness. I love ya’, fella’, and can’t wait to meet ya’!

Today's the Day

Today's the day we bring Paton home! We will be heading to the hospital shortly to check Paton out. Of course, that will be an all-day affair. After we leave the NICU, we have to see orthopedics, who will fit him with a boot to help correct the club foot. The kids are really excited to see him home. Well, OK, Hannah is excited. David & Charis aren't quite sure. :) We're all looking forward to getting back to some-kind-of-normal. The new "normal." God has been so good to us. We are filled with joy. I'll try to post some pictures once he's home.

Going Home! -- Yeah and Yikes!

We had a big consultation this morning with all the doctors and nurses. Here's the bottom line: Paton's going home by the weekend! We are nervous, but we are thrilled. The neurosurgeon is convinced that the swelling on his back is not a build-up of cerebro-spinal fluid, but just swelling from the surgery. He feels it has gotten a little better, and will completely go away over the next few weeks or months. We'll have to keep a watch, but at this point it looks as if there is no hydrocephalus, and therefore no need for a shunt! This is just amazing, as 80-90% of spina bifida kids have to have one. Of course, it could happen later. But for now, we're good. He cannot have any pressure on his back until it heals, so it will take some adjustments with sleeping, feeding, holding, trasporting, etc. He will have a specialized car seat (bed), and specialized positioners. He will also go home with an orthopedic boot on his leg to help correct the clubbing. We just finished infant CPR -- kind of scary.

Thank you all for praying. Many of you have prayed for God to give wisdom to the doctors. That prayer, in particular, I think He's answered mightily. Most of the doctors were pretty sure he needed to be shunted, but the neurosurgeon kept insisting that we wait. I believe that was clearly the Lord's doing. Please continue to pray for us as we make the transition and try to keep in mind all the many, many things we are learning in the process. God is good.

Family Time

Enjoyed some great family time tonight. Hannah thoroughly enjoyed her little brother. Tomorrow we really hope to get some more information and answers about what the doctors are thinking for Paton. The doctors are going to confer about the ultrasound and the back swelling. They should be evaluating him regarding when he might be able to go home, and if he will need a shunt.

Up in the Air

Everything's up in the air. And confusing. The neo at the bedside is surprised the neuro is not calling for a shunt. The neuro is saying he doesn't think Paton needs a shunt! At least, not now. In fact, he's talking about sending Paton home!! But the nurses can't believe they'd send home a baby with as much swelling as Paton has on his back right now. And nobody seems to know for sure if the swelling in Paton's back is a build-up of CSF or just swelling from the surgery. The head circumference has shrunk for the last two days (a good thing -- no swelling), and we're hoping the head ultrasound this afternoon will confirm that there is no cerebro-spinal fluid building on the brain. So there are many good indicators. But we are a little nervous about having the baby come home this soon with still the swelling that he has. The neo said he would get a hold of the neuro "if it takes all day" and hopefully give us some more concrete answers by the end of the day. Meanwhile, we're taking CPR classes, checking into specialized modified car seats ("car beds"), following up on insurance stuff, and taking Grandma back to the airport. Thankfully, our church family has been so, so great in their offers to help in any way. One more great piece of news -- they've lifted the ban on children in the Children's Hospital! (swine flu) So after dropping off Grandma, we're all going in to see the little fella. Exciting!

Doing Better?

The doctors came in today and said that it looks to them as if some of the fluid has dissipated from the sack on Paton's back. Combined with the news that there is no fluid build-up in the head, that's encouraging. There is always the possibility of the need for a shunt later on, but for now we're continuing to wait. They will do another head ultrasound tomorrow, and maybe we'll know more by Tuesday. It was wonderful to be able to hold the little fella for the first time.

Fun with Grandma

We were so blessed to have Jen's mom come out for a week to help take care of the kids. They had a great time doing things every day. And on the last day -- we got to hold Paton! What joy!

How to Comment

A number of folks have said they wish to comment, but can't figure out how. Hopefully this will help:

1) If you have a Google account (gmail, for example), sign in before you come to The Bray Crew. If you click "stay signed in," you should be able to comment.

2) If you do not have a Google account, it's easy to create one. Just click here and follow the directions. It's free and very, very simple. You can comment as long as you are signed in to Google.

3) To comment, click on "Google Account" under the "Comment as" selection (or, if you have one of the other services, you can sign in that way).

Looking forward to hearing from you!

"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.

Paton John

Paton's New Digs

Here you can get a better idea of the clubbing of the left leg. They will do casting and bracing over time to correct these things as much as they can.

First Contact - What Joy!

Hurry up and Wait

More waiting. I'm sitting here right now in the NICU next to my handsome sleeping boy. He's had a rough morning. First the neonatologists, then the plastic surgeons, then the nurses -- all "messing with him." And he hasn't even had surgery yet! We're waiting for anesthesiology to get here. They said last night that they'd probably be prepping him around 6:45, but it's now 8. O, well. Paton seems comfortable right now. I see his little chest moving gently with every breath. His little legs are tucked up under him and he looks pretty cozy. I may post a few more pictures here in a bit, if I can figure it out. Then I'll give an update after surgery. We had problems with the wireless network here (they gave us the wrong access code), and then our internet filter was keeping us off the system. But I think we're all set now.

Paton's Here!

5:59 P.M. 6 lbs. 10 ozs. Hooay! We are so happy to finally meet our little fella. Jen is feeling ... well ... beat. And hoping she can eat before too, too long! : ) Paton will be having surgery tomorrow morning at 7:30 to close the hole in his spine. So ... an early morning. There is some pretty bad "clubbing" of his left leg, but we really don't know any effects yet. The opening in his back is quite large, so plastic surgeons will be on hand tomorrow as well if they are needed. God's been good. We look forward to some sleep.

Thanks for Praying

Well, it's less than 24 hours. We've had several calls tonight from folks saying that they're praying. What a comfort that is to our minds. God is good, and we can't wait to meet our little fella.

A Good Reminder

Hannah & Charis gave us a good reminder: "God never moves without purpose or plan." Amen.

The Unexpected

Well, with two out of our three kids, we've learned to expect the unexpected. Both Hannah and David ended up having to be in the neonatal intensive care unit for about 2 weeks when they were born. Back in 2004, while David was in the hospital, and Jen was still a patient, our daughter Hannah was involved in a car accident with some friends and was taken to a different hospital. At that moment, 75% of my family were hospital patients! Talk about unexpected! Well, we found out this morning that Paton's surgery has been rescheduled. We'll be going in later on Tuesday afternoon. More waiting -- ugh!

Counting Down!

Well, we're counting down, now. About 80 hours from now, we should be welcoming Paton John into the Bray Crew. Unless we go into labor early (yikes!) we should be heading to St. Luke's about 4:45 am this coming Tuesday. Jen's mom comes in Tuesday, and the kids are looking forward to spending a week with Grandma. As of last week, the little fella was about 7 lbs. The doctor said there is no evidence yet of hydrocephalus. The sack on his back is quite large, and may rupture during delivery. Either way, they'll be doing a surgery to repair the back within about 24 hours or so after the birth. Can't wait to meet our little fella!