Home Again

We praise the Lord that we are all home together again! Paton was released today. The doctor did another scan and said it looks like the shunt is working -- he said that it will just take some time for his body to adjust again to equilibrium. Hopefully he will feel better in the next day or so.

His siblings were very excited to have little brother (and Mommy!) home again. Hannah is so, so good with him ... just like a little mama. They all love the little fella.

Tonight we were able to host another lady whose little girl also has spina bifida. We met her when Paton was first born. She comes up on the bus all the way from the Texas/Mexico border. We are praying for her and her little one.

Well ... here's hoping that it will be a long time before Paton has to be back in the hospital!




(Feeding Mr. Bear a "gold fish")

Struggling

Well ... the little fella may have to be in for a little longer. Paton threw up a few times yesterday (Sunday) morning. The doctors had said that vomiting could be a sign that the shunt is not working. Paton was very lethargic all morning. But then around noon Jen fed him some pudding -- miracle food! He became his old self again, and had a great time with his siblings all afternoon (see picture below). But then this morning, he started vomiting again. So we are not sure he will be able to go home today, like we hoped. We want to make sure everything is working well so we don't have any more complications ... especially with Christmas coming! So right now we'll just have to "wait and see."

On the Mend

Paton came through his surgery this morning very well. Thank you all for your prayers. The neurologist determined that the valve portion of the shunt was the problem. They inserted a new, "programmable" valve closer to the top of his head (I think it would be really cool to have a remote control for your head!). The drainage tube was then rerouted to that new valve. The old shunt valve (in the picture below you can see the bandage nearer the back of his head) was left in place, as there is the danger of hemorrhaging at the site. It will only be removed if it becomes a problem. The little fella's sleeping a lot today, along with his mama (neither got much sleep last night!). God is good.

Shunt Revision

Well, our little fella's almost a year old. It's been a fantastic year! His smiles are pure joy, and his laugh is infectious. We've just had the best time.

But the other day he had a pediatric visit, and the doctor noted that his head growth was literally "off the chart." She immediately recommended a scan. The results showed a buildup of fluid in the ventricles -- hydrocephalus. This is usually a sign of shunt malfunction. She suggested we take him to the TX Children's ER. Jen & Paton arrived last night, and they did a head ultrasound. The results confirmed the hydrocephalus, and further tests confirmed that there is some kind of blockage in the shunt system.

So the little fella's in surgery now as I write this. According to the Spina Bifida Association, "about 40 percent of shunts will fail and need changing (or revision) within one year, 60 percent within five years and 80-85 percent within 10 years. About 20 percent of people with Spina Bifida will need more than one shunt revision." So I guess we're pretty close to being "average" at this point.

Keep us in your prayers.

I'll try to post a little later today.

Paton's Friend Scott

We've mentioned earlier Paton's friend Scott, from Eden, NC. He's had spina bifida for about 40 years now. He's been a great encouragement to us. We had a chance to sit and visit with him and his family when we took a trip out East a few weeks back. It was wonderful to see him. And his parents were every bit as encouraging as he was. They said, "We envy you. We wish we were young again and just beginning the wonderful adventure of raising a child with spina bifida!" It was just a joy to spend time with the family. Their dependence on God's grace has seen them all through. May He be gracious to us as well

Some of Paton's Family (Dad's side)

The Whole Crew

Some Family Pictures

Close Up

Take Me Out

... to the ball game! Thanks, Joan, and Houston/Gulf Coast Spina Bifida Association, for the tickets to the Astros game tonight. (Unfortunately, we lost 4-0).

Paton and Paton

This is Paton Bray with his new friend Paton Ngian. Both are named after John Paton. The "other" Paton's the son of friends Ping & Melanie. Enjoyed a great time together today!

Paton's First Trip to the Sea

Our kids absolutely love the ocean. We were able to take a break and head down to Galveston for the day, a few weeks ago. Paton wasn't too sure about the splashing, but he loved watching his siblings!

Paton's Skateboard

Paton's had a series of three casts, and now he has specially designed boots and a leg brace to hold his feet in an outward position. The point of this is to help his left foot hold a normal shape eventually. He doesn't seem to mind too much. He is SUCH a good boy! And cute?!! Of course, Dad's not at all prejudiced. :) He goes in for doctors' visits every week or so. So far all is going well for his shunt. He actually seems to have quite a bit of leg movement right now. We'll see in time. But we are just SO thrilled that God's given the little fella to us!

First Cast

The little fella's gotten his first cast. When he was first born, everyone was saying he had a "club foot," but when we first went to the orthopedic department, they said they did not think so, but that we should just stretch his foot out. Well, the other day he saw a specialist, who was sure that his foot would need corrective casting and bracing. So, he'll have a new cast every week for the next 5 or so weeks, and then he'll also get a series of leg braces. Lord willing, this will be a real help. We got groceries tonight, and I can't tell you how many people stopped us to ask what happened to the little fella. We keep praying for good opportunities to glorify God.





Last week we had a couple of really nice "family days." On one of the rainy days we went to a mall with a great play-place and an ice skating rink. Daddy did not fall once, and actually got pretty fast. Hannah started slow, but by the end was skating out in the middle with a lot of confidence. She can't wait 'till the next time.

Birthday Season

The beginning of the year is "birthday season" for half the BrayCrew. Paton's in January, Charis is February, and David's March. We had a great time celebrating with Charis and David. Enjoyed times with friends. Wish we were closer to our family. David was thrilled with his cake, as you can see in the video! Aunt Es made a gorgeous princess dress for Charis, which she SO willingly modeled for us. This week we're enjoying a little extra time together. God is so good.

On my back!

Good news!  The neurosurgeon said today that Paton can now lie on his back!  Now we can use the car seat instead of being strapped down face down in a car bed.  And it makes it much easier to hold him and do just about everything.  We are so happy.  It also helps that we don't have to put the protective covering on his back anymore.  That was about a 6-step process that had to be done every day.  The kids had a great time with Paton today.  We are so, so thankful.

All Well

All is well at home with little Paton.  We feel like we are beginning to get back into our "normal" schedules.  The routine has been good for the whole family.  Paton's shunt seems to be working well.  The swelling on his back is much diminished, although it may take some cosmetic surgery in the future to finish correcting it.  The kids are enjoying Paton.  He got to be home in time to celebrate Charis' 4th birthday.  We see the neurosurgeon this week, as well as Early Childhood Intervention.

Home at Last

We are home!  We went in this morning, expecting that Paton would be released around 2 or 3.  However, by the time the pediatric neurosurgeon came and gave us the green light, it was almost 8 PM.  We are so, so glad to be all home together.  The kids were very excited.  We came home to an absolutely beautiful house, thanks to a few of the church ladies!  And we are so thankful, too, to "Da" and "Aunt Terry" and others who've helped with the kids, and to all the many of you who've made such delicious meals for us.  Thank you also, many friends and family, for the many prayers that went up on Paton's behalf.  God has answered in some very specific ways.  We rest content in Him.  So, for now, good night.

Waiting

More waiting.  Paton was scheduled to be released today, but he developed some sort of bowel issue.  We are currently waiting for a pediatric surgeon to come take a look at it.  We still hope to go home tonight.  We'll see.  Also, we got a name for the fluid-filled sack that kept growing on Paton's back.  They call it a pseudo-myelomeningocele.  It is basically a "pop-off valve" for the spinal fluid that would have built up in the head.  Thankfully, since they placed the shunt the sack on the back has not continued to grow.  It might actually have been a blessing, since it kept any pressure from being put on the brain.

Well, hopefully we'll all be at home together tonight!

Going Home

Paton's going home on Monday!  We are so excited.  He's clear of infection, and his shunt seems to be functioning at this point.  The doctors are all pleased with his progress, and so are we.  The bulge at his surgery site on his back is much, much smaller, and isn't continually filling up with spinal fluid.

Hannah so much enjoys her new little brother.  She really wanted to stay with me at the hospital the other day to see him awake again and get to hold him, even though it meant sitting in the hospital ICU for about 5 hours.  She entertained herself by reading, but was thrilled when Pate woke up.  She really wanted to feed him and hold him.  Here are a couple of pictures.  She'll make a great mama some day.

God has been so good.  We hope to be all together again in about 3 days!

Shunt Success, So Far

Paton's out of surgery, and doing pretty well.  The neurosurgeon placed a "V-P Shunt" in the little fella.  It runs from the back of the right side of his head (from the Ventricles) down into his abdominal cavity (the P-word which I can't remember at the moment).  Hopefully the level of resistance in the shunt is less than the resistance in the pathway into the pocket on the back, so that it will not continue to fill up and then possibly put pressure on the brain.  There is a fairly small but significant risk of infection (8%) with this surgery.  There is also a possibility that the body will reject the shunt, as it might any foreign object in the body.  We have a friend whose body rejected three different shunt attempts.  However, at the moment the little fella's doing all right, and resting as long as mom is holding him.  She doesn't mind. : )    We made a friend here who's baby also has a shunt, so the kids all got to see what it would be like.  We have yet to come up with a good nickname for the little fella -- "little fella" might not seem quite right a few years from now.  Yesterday the kids came up with "milkshake."  Hannah is "cheeseburger", David's "chicken nugget," and Charis is "small fry."  Not so sure those'll stick, either.  We're just praying Pate Pate'll have a restful night tonight.  Thanks again for all your prayers.

I Will Give Thee Rest

Little Pate Pate hasn't had anything to eat since midnight, and we were so concerned it'd be a miserable night and morning for him, as he was not taken into surgery until just 45 minutes ago, about 1 PM. But God answered the prayers of so many of you, and enabled him to rest some. We took turns being with him from about 3 AM on, and he slept off and on, but he really wasn't ever too fussy. Finally this morning, he drifted off into a nice snooze before they finally came to take him. This was so much more peaceful that we thought, and we can't help believing this was of the Lord. The Lord also gave us peace and has kept us feeling fairly rested.

Nice Visit Yesterday

We had a nice little Family Time yesterday afternoon. The kids all enjoyed their little brother. Surgery is scheduled today for around noon. Poor little fella hasn't gotten to eat since midnight! :(

A Nice Pic

I thought this was a nice picture of the little fella.  He goes for surgery tomorrow to put in the shunt.  Please pray.  Thank you, and good night!

On Hold

Up and down.  Back and forth.  On and Off again.  This is life in the hospital.  Doctoring is science, to be sure, but it is far from an exact science.  When you really spend time around the medical profession, you realize just how many judgment calls are a part of it.  Sometimes we're tempted to think of doctors as almost omniscient because of all their study and experience, but their work is far from infallible.  This is why our dependence on the Great Omnipotent and Omniscient Physician is so stabilizing.

The neurosurgeons were marking Paton's head this morning in preparation for the shunt placement, when the word came back that there is still sign of possible infection.  They are going to do a culture and hopefully get the results back by this evening.  They're going to watch him carefully for the next couple of days, and try the surgery again probably Monday or Tuesday morning.  So, once again, we wait on the Lord.

Surgery Tomorrow

Please pray for our little fella, if you would.  Things have been moving pretty fast.  The doctors said that he's over his infection, and they are going to do a surgery to put in a shunt tomorrow morning about 8.  Wow.  We thought we'd be another couple of weeks before they thought about that.  If all goes well, he should be in for another week or two for recovery.  Our main request is that God would grant the doctors wisdom.  He is the Great Physician.  We lean on Him.

Fighting Infection

The little fella's new home is in Texas Children's Hospital Level 2 Nursery for at least the next month.  The infection he developed is coming under control, but they still have a ways to go to get it all.  Then, once the infection is completely gone, the doctor has said to "prepare for the fact that he's almost certainly going to need a shunt."  The doctors now believe the cerebrospinal fluid from his head is making its way down to the surgery site on his back where it collects.  The shunt is a small valve and tubing inserted under his skin, running from his head down into his abdominal cavity, where the fluid will be absorbed by the body.

Jen's staying with the other kids in the morning, and then spending the afternoons/evenings with Paton.  Some of the church folks are helping me with keeping the kids some afternoons.  Others have made us wonderful meals.  We're so thankful for our church family.  We're looking forward to the time when Paton can be home for good!

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!

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"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! : )