Update, prayer and praise

The last couple of days have definitely been a whirlwind for us. After being in the hospital throughout the weekend, with dehydration, a urinary infection and stomach bug, Jacob was released from the hospital yesterday. However, in the meantime, Daddy came down with the same bug and was sick most of yesterday. He is feeling a little better today. Please pray that Mommy and James will avoid this bug.

This morning, Jacob and Mommy went to see Dr. G for a follow-up and have been advised that he may need to be re-admitted to the hospital as he is still showing signs of dehydration. We have seen cases in the past, with Jacob, where the IV fluids are removed too soon and he ends up going back down. Please pray that is not the case today.

We do have a praise to share - one of the nurses he had from back in 2008 came in while he was in the hospital and applied what we call some "tough love". As a result, Jacob has now begun to cath on his own with minimal help from Mommy and Daddy. This is a huge step foward for Jacob.

God of Light, Shine down on us.

Mommy and Daddy

Update

The doctors have determined that Jacob has a urinary tract infection and may have a stomach bug, too.  He is still fairly dehydrated,  but did have a good nap.  He is still running a low grade fever and will continue to receive IV fluids and antibiotics.   At this point, he will probably be here until Monday, depending on how quickly he can become hydrated and maintain without the aid of IV fluids.

We are definitely thankful that he has been pretty much illness free since before surgery.

We are reminded of an old gospel song - the title is this:  "You can't fix it, but He can."

Mommy and Daddy

Prayer and update - ER visit

Good morning.  Jacob has been admitted to the hospital due to a urinary infection, low grade fever and stomach/GI issues.  They started an IV last night and he is doing a little better this morning - resting at the moment.  Still running a few more tests.  

He will likely remain here throughout the weekend.  

Please pray that all of these things will get resolved quickly. Jacob is eager to get back to the Children's House to play with his friends.

Daddy and Mommy

On the way to the ER

Please pray for Jacob. He can't stop throwing up and the other. Daddy is taking him now at 2:30 a.m.

Lord you have your son in your hands. Hold him and heal him. In Jesus name

Merry Christmas

Our Christmas this year was certainly unusual and unique. Several of the families here at the Children's House got together to help put out presents for all of the children and do our best to make it seem like home. We gathered with two other families this morning to open gifts and celebrate our Savior's birth.

After that, we had breakfast served by a local family - very delicious - even had pancakes shaped like snowmen.

A little later in the day, another family and local restaurant served lunch/dinner. We are completely full of good food and drink and also thankful for God's mercy and grace.

We are reminded of the lyrics of one of our favorite "non-traditional" Christmas songs, sung by one of Daddy BA's favorite country groups, the Oak Ridge Boys. The song is entitled "Inconvenient Christmas" and tells the story of a family where nothing was what we would consider normal. Everything from the gifts ordered to the travel plans - nothing was going according to plan. In the midst of this, the family ponders how inconvenient all of this was, but then are reminded that "the most inconvenient Christmas that ever was, was the first one when God came so far to give Himself to us. So when stress hits each December, how it helps us to remember God is with us most when things just can't get worst. The most inconvenient Christmas ever was, was the first."

The song continues by describing the circumstances of His birth - "a young girl expects a child she can't explain. Forced to walk 100 miles just to give birth in the hay. While the king at that same hour, fearing challenge to his power, sent his troops to track them down and wipe them out. Yep. Hands down. The most inconvenient Christmas ever was, was the first."

But what a great gift - the greatest of all - that God so loved the world that He sends down His only Son.

PS - Jacob continues to make a little bit of progress each day with his cathing. Tomorrow he is going to the clinic for a quick check-up with Dr. G's nurse. The plan is to continue as we have been at least until next week when Dr. G returns to the office. The likely next step will be removal of the SP tube and hopefully we an also squeeze in a couple of doctor visits with ortho and neurology.

As you pray, please continue to pray that Jacob will consume sufficient water to keep everything flowing as it should. Also, please pray that we will be able to figure out if the tethered spinal cord is becoming more pronounced (he has been tip-toe walking quite a bit lately). We'd love to be able to find out, while we're here, if this is something that will soon need to be addressed.

He had a surgery on his tethered cord way back in 2007 and at the time, the surgeon said he may need to have it again down the road.

May God grant us the wisdom to step out in faith, knowing the He will guide us.

Mommy and Daddy

Prayer request

Good evening.  

We continue to cath about every two hours, but it is definitely a challenge each time.  Jacob has quite a bit of pain and discomfort during the process, especially at the valve where the catheter enters the bladder.  

At times it reminds us having to dilate his colostomy a few years ago, although we think the pain might be a result of bladder spasms.  

He is doing well otherwise and starting to walk more, but the cathing is certainly our main concern at the moment.  

Please pray that the process will get smoother, less painful and that he will avoid developing bladder stones.  

Oh, Lord, our Lord, How majestic is your Name in all the earth.

Mommy and Daddy

Let the cathing begin

Jacob has now been using the catheter for about 24 hours. He "caths" every two hours and also has to be diligent in drinking lots of fluids. At night, we hook him back up to the SP tube and a bag.

It is certainly a unique challenge for both us and him. He wants to do it himself, but there is a point during the cath process where he still needs our help.

As you continue to pray, please give thanks that the cath process has been going well so far. There are several potentially challenging situations that can arise as we enter this new phase. The main concern is the development of bladder stones. The best way to avoid these is to drink lots of water, cath regularly and also flush/irrigate periodically.

Another huge praise is his colostomy - it has been working beautifully and the bag changes take less than half the time they did before the revision.

So what's next? We will continue to cath every two hours during the day and hook him up to a bag at night. With every cath, we must measure the output from the cath and then the SP tube. The goal is to have nearly all of the "liquid gold" coming from the cath and none left in the bladder to drain out the SP tube.

Beginning tomorrow, if the output is good, we will try to spread the intervals out a little further to 2.5 hours. If things continue to go well, by Monday, we might extend to three hour intervals.

We may look to have the SP tube removed as early as 12/30, but that is still up in the air.

Thank you for your diligent and faithful prayers.

"Let mine eyes see Jesus only. Let my lips speak forth his praise."

Mommy and Daddy

Prayer request

Daddy and James are traveling today. Please pray they will have a safe trip. 

Jacob and I can't wait to see them... it's been two weeks.

God is great ALL the time

Jacobs and mommies creation

Thank you Pinterest for this great idea. I loved making it.

Oh my......

Does everyone really know how much Jacob loves inflatables? He loves them so much that before we left for surgery he was crying thinking that he wouldn't be able to see them this year. Well everyone, you should probably know that I bring the house when ever we leave for surgeries. So therefore by the grace of God, Bryan was able to fit our house along with Jacobs inflatables and a Christmas tree in our car. Thank you Jesus for the little things. 

And thank you Sean for allowing us to carry on the tradition of blowing up Big Frosty in the house. Even if it isn't our home, it's The Children's House...our home away from home.

The family snowman out on the patio 

Big Frosty joins them. Jacob taking pictures of me blowing them up. 

A picture of Jacob with the biggest smile. This Christmas I was afraid I was going to miss it. 

There is Rudolph

Decorating our Christmas tree

Before James left (two weeks ago) I asked him to help decorate the tree too.

The night before daddy and James left

Some Pictures

Precious Sophie playing in the snow.

Sophie waving to Jacob.

Maybe next snow Jacob will be able to get out and play.

Sherrie built a cute little snowman for Sophie and Jacob.

Then guess who comes at night to clear the parking lots?

Oh that snow plow is so close.

Oh no.....poor frosty.

Praise and Prayer

As of about an hour or two ago, the pesky scab around the continence stoma finally broke free and is now off. Praise the Lord.

Mommy had been regularly soaking it in an attempt to move it along (before next week's procedures), but in doing so, it was making the adhesive on his colostomy bag come off prematurely.

Also, Jacob's output has been good over the past few days and he has been drinking (well, sometimes with a little bit of bribery/incentive involved).

We also have a couple of prayer requests. First, please pray for Jacob (and all of us, really) in the coming weeks. We have a few planned and tentative dates for the "next steps" in the recovery. Here they are:

Dec 16th - remove two kidney stints
Dec 17th - IVP test (kidneys). This will involve the placment of an IV, so please pray for this will go smoothly (Jacob has historically been a difficult "stick").

In addition, we also have an appointment with Dr. Jallo, Jacob's neurologist, to check out his leg pain and tip-toe walking.

Lastly, Daddy and James are planning to travel up this weekend. Please pray for safe travels as there is a potential for mixed precip on Saturday, at least in the Baltimore area.

Unto the King Eternal, Immortal, Invisible, the only Wise God, be all Praise and Glory.

Mommy and Daddy

Leaving the ER

One of the doctors who was in on Jacob's surgery checked him out and after several ultrasounds, they've decided to send him home. We are thankful that he did not require an IV and that he did not have to get admitted. We are still concerned about the output, so we'd like to ask for your continued prayers - mostly that he will drink plenty of water and that a return trip to the ER will not be needed.

We certainly covet and appreciate your prayers.

To God be the Glory.

Mommy and Daddy

Another Update

After running an ultrasound, the doctors advised that they could not find any pee in the bladder. This is strange because he has been drinking today. They are going to try to get Jacob to drink a lot of water and see if this gets things moving again. If not, the docs may run another test on his kidneys.

Thank you for praying.

Mommy and Daddy

Prayer update

Please continue to pray for Jacob. The pee still would not come out, so he and Mommy are heading to the ER.

Hold to God's unchanging Hand.

Mommy and Daddy

Prayer Requests and update

We'd like to request prayer for Jacob today. One of his kidney stints is not flushing very well. In addition, he has complained of some pain in that area. Ultimately, the doctors want the pee to stop coming through the stints and only come through the SP tube (directly from the bladder). The stints continue to produce some urine, so please pray that everything will start to come through the SP only.

Lastly, there is a scab near the continence stoma that has become a bit of a concern. Mommy has been soaking it since Tuesday in the hopes that it will fall off well before the 16th. However, it seems to be kind of tangled up with a few stitches and doesn't want to come off.

As of today, the plan is to continue flushing and maintaining the SP tube from his bladder and the two kidney stints until the 16th. At that time, Dr G plans to remove the two stents and "activate" the continece stoma (begin cathing). Please pray that everything will stay on schedule and that these areas of concern will resolve quickly.

The Lord, He is God. Blessed be the Name of the Lord.

Mommy and Daddy

Happy Birthday, Jacob

Today is Jacob's 7th birthday. In reviewing our blog, we realized that we never really shared the story of his birth and some of the events that took place between 12/3/06 and his surgeries in late 2008, when we started this blog.  So it seemed fitting that we do so today - on his birthday. 

It is kind of a long read, but we know there are some who may be interested in hearing Jacob's story from the beginning.  

It is hard to believe that exactly seven years ago, Jacob was born into this world and a mere 24 hours later, he was taken by medical air transport from Chattanooga to Baltimore. It was certainly a whirlwind day for Mommy and Daddy, along with our friends and family.

We really didn't know exactly what Jacob had, other than what we could see (the picture at the top of the blog gives you some idea). We are thankful that the surgeon on duty when he was born was honest in saying she hadn't seen anything like this before. She located two hospitals, one in Seattle and the other in Baltimore.

By God's grace and mercy, we ended up at John's Hopkins in Baltimore. It turns out that this really is the premier facility, in the world, for treating bladder and cloacal extrophy. We've heard many stories from families where other hospitals have attempted surgeries on exstrophy infants/kids only to have the surgeries fail - mostly due to the rare nature of the birth defect. Cloacal exstrophy occurs in only one out of every 250-400,000 live births and is considered one of the most severe birth defects where human life can still be supported. Of course we know that As an added bonus, our Lord allowed us to go to a place that was within 30 minutes of family.

However, since Mommy had just had a C-Section delivery, we were not able to go up until two days later. Thankfully, Uncle Ron and Aunt RoRo checked on our little Jacob until we were able to get there to be with him.

Jacob spent the first three weeks of his life in the NICU at Johns Hopkins. He had an omphalocele surgery to put his bowel/intestines back inside and also had a stoma/colostomy put in place. We met Dr. G for the first time and he told us that Jacob had cloacal exstrophy. He said that he was encouraged by the size of Jacob's bladder and the amount of bowel he had. There were, however, some other physical aspects to his condition that we knew would present some challenges down the road.

Shortly after that, still during his first week out in the world, we found out that he needed heart surgery. It was one of those, "whoa, wait a minute" moments - very unexpected - especially considering everything else that was going on. It turned out to be a PDA surgery, which while it was around his heart, was (thankfully) not as serious as we first thought. By God's grace, he was released from the hospital two days before Christmas - a great gift to us even as we celebrated the greatest gift of all (Jesus).

Over the next few months, we became "experts" at taking care of an exposed bladder (saline and saran wrap), a colostomy and a club foot (which required an achilles surgery, cast and bar). Within about a month of getting out of the hospital, we made our first trip back to Erlanger here in Chattanooga, as Jacob had gotten RSV. He spent several days in the hospital and we quickly learned that cloacal's can become dehydrated very quickly, due to their much shorter than normal bowels and difficulty with nutrient absorption.

Later in that same year, we noticed that he had a fatty bulge on his lower back. We had it checked out and it was determined that he had a tethered spinal cord that would require surgery. We scheduled the surgery for the end of August, but God had a different plan for us. Upon arriving in Baltimore a few days prior to the surgery, Jacob started to develop a cough. We went to the pre-op area only to have them tell us that it was too risky to put Jacob under anesthesia with his cough. So, we headed back to Chattanooga and rescheduled for it for the end of the next month.

This time, the surgery took place as planned and Jacob was in the hospital for a week or two. The suregery went well, but the recovery was pretty challening. Since Jacob's bladder was still out at the time, his urine was always getting close to the incision site. He had several large openings/wounds in his lower back that required daily treatment of bandages, gauze, and some other stuff to promote healing.

Mommy busted out her McGyver skills and came up with a system to help keep the pee from making it around to his back. She used a combination of a diaper, men's guard and female pad. It took quite a bit of trial and error and it wasn't a very pretty site to see (literally or figuratively), but it worked like a charm. 

But then there was the wound dressings. These had to be continued for several weeks after Jacob was released from the hospital. Mommy attempted to handle them, but it became tough to stomach the site of the large openings. Thankfully, we ended up getting a great home health nurse, Ms. Elsie, who, in addition to being a tremendous help to us, was also a fine Christian woman. Even though it seemed like it took forever, the wounds did eventually heal up.

We had one reminder, though, from that surgery that stayed in place for over six years. There was a stitch in his lower back that didn't come out. We could see it clearly, but removing it at the time might have opened him up for a potential infection. So the surgeon advised that we should just leave it. It sometimes irritated Jacob because it was right at his pants line and we did sometimes put bandages and neosporin on it. Otherwise, we just left it there. BUT - whenever we had our evening prayer time, we would mention the stitch, asking that God would protect it from infection and that it might come out according to His will and timing.

Earlier this year, God decided it was time for the stitch to come out and it did so without any real pain or worries.  

Over the next few months, we prepared for the two "big" surgeries - bladder closure and osteotomy (pelvic bone).  Within less than a year, we would be heading up to Hopkins again for what turned out to be a 10 week hospital stay and 101 total days in Baltimore.  But to find out more about what happened then, be sure to check out the older posts in our blog.  

As we look back, we see more and more clearly how God has worked in and through all of these circumstances, that which was pleasing to Him.  And we rejoice in knowing that all of the glory - in the tough times and the good times, belongs to Him alone.

Happy Birthday, Jacob.  We love you greatly and thank The Lord daily for the great things He has done for you, for us, for our friends and family, for all of the faithful prayer warriors out there and for any who have been (and hopefully will continue to be) touched in some way through this journey.  

Mommy and Daddy

Update from today's appointment

Mommy and Jacob returned a few moments ago from his appointment with Dr. G. The report was good and as it stands now, he is scheduled to get the two kidney stents removed on Monday, 12/16, and have an ultrasound the next day. After removing the stents, we will begin catheter training.

We are still not completely sure what happened with the infection, but we will continue with the antibiotic and are most thankful for the good report.

Thank you for praying.

Mommy and Daddy

Praise - Update

Mommy is on her way back to the Children's House now with Jacob - and they made it back in time to see Santa.

Jacob received a good report so far, but the doctors want to check out the cultures and blood work. We should have a better idea tomorrow when he has his appointment with Dr. G.

Thank you for praying.

God answers prayers.

Mommy and Daddy

In the ER

Waiting for the Doctors. Should be here in the next 20 min. Thank you for praying.

Additional Prayer Request

Jacob is currently with Mommy, waiting for the doctors to come check him out. In the meantime, we found out that there is a lot of sickness at James' school. Please pray that the Lord will place a hedge of protection around he and Daddy so that they can both return to Baltimore next week.

Also, please pray for protection around Courtney and Jacob, too, as Mommy noticed several children in the ER with possible stomach viruses.

May the Lord protect us and keep us, according to his perfect will.

Mommy and Daddy

Prayer Request

Please pray for Mommy and Jacob this morning. They are heading to the ER because of the redness/infection and a possible adverse reacation to the antibiotic. Dr. G is at the hospital today, but likely in surgery. We are thankful that he is here, though.

In addition, Santa is coming for a visit today at 4 pm to the Children's House and we know Jacob would love to be back there in time to see him. But we certainly are most concerned about his health and healing, even if that means getting admitted again to the hospital.

Thank you for praying.

"Standing on the promises of Christ, our Saviour"

Mommy and Daddy

Update - Prayer and Praise

Mommy and Jacob went to the hospital today (Sunday) to get the SP tube site checked out.  The doctor is pretty sure that he has developed an infection, so they prescribed a five day antibiotic.  We are thankful that the hospital pharmacy was open today and we were able to get the meds and supplies needed to treat the infection.  The next closest pharmacy was over two blocks away and not in the best part of town.  

Please continue to pray that the infection will heal and that Jacob will get a good report from Dr. G on Tuesday.  

Praise The Lord for all the seemingly small things that have occurred during the midst of the infection challenge.  These include not having to go to the ER, having a nurse who on site at the Children's House (she has been the volunteer manager at the house over the Thanksgiving weekend), having the hospital pharmacy open on a Sunday afternoon and the aforementioned praise about getting the meds and supplies needed.  

God is good.  

Mommy and Daddy