I praise you because I am fearfully and wonderfully made; your works are wonderful, I know that full well. Psalm 139:14

Surgery Update

Carter's surgery went much better than expected yesterday.  He had a great night and has done really well today.  He has been in and out of it for the most part.  He has a PCA pump that I am able to push whenever I think he is in pain and it goes continuously.  It has really helped keep Carter's pain to a minimum.  They are wanting Carter to rest and heal the next few days, so it has also kept him calm enough to rest.  

Describing what was done during surgery is very difficult, but I will try.  They started at the small intestine and worked their way down Carter's intestines taking down all of the adhesions.  Adhesions are scar like tissue that causes things to stick together.  Normally your organs and tissue are able to move around each other and adjust whenever you move.  When there is an adhesion it cannot do this.  Carter had multiple adhesions causing his intestines not to be able to move properly.  Adhesions usually occur after a surgery is performed, so we were not surprised to hear that he had multiple adhesions.  So, they took down all of the adhesions and once they got to the end of Carter's colon they moved it from being behind his bladder to up high in his abdomen, near his small intestine.  They then created what is called a Malone.  This is a valve that is created to help clean out Carter's intestine.  This will be helpful if he does have motility issues, the movement of stool through the intestines, in the future we will just flush fluid through the Malone and clean his intestines out for him.  They also found a hole in Carter's mesentery.  The mesentery is a leaf like structure that aides in holding parts of your intestine in place. A piece of bowel had slipped through the hole and was kinked. They think this was the cause of all of the vomiting.   The hole could have possibly been there since birth, since it was midline and Carter has a midline defect.   However, the problem arose when a piece of bowel slipped into it. We were also informed that Carter has about 150cm of bowel, normal is 250-300.  The surgeon was still positive about this and said it is still plenty to work with.  I know it is all a little confusing, but basically he had a clean up, tune up, rearranging and modification done to his intestines.

Taking down the adhesions is a very painful procedure.  This is why Carter has the PCA pump.  Our focus right now is pain management. We will wait until Carter has stool to begin feeding him and that will tell us if the surgery was successful or not.  We do not anticipate this to happen until next week.  Both of the Surgeons and Urologist are anticipating a good outcome and have been very positive about what they found.  Please continue to pray for Carter.  Pray for pain management and for his bowels to heal and start to function.  Thank you all for all of your prayers and continued prayers.  They mean more to us than you will ever know!

Surgery Day...

Today is another BIG surgery day for Carter.  After a very restless night, he is already completely exhausted.  Yesterday was an extremely busy day for Carter.  After four attempts to place an I.V., Carter received another blood transfusion in order to get him ready for surgery today.  They have already placed more blood on call to the O.R. just incase he needs more today.  Unfortunately, he was unable to receive my blood due to timing.  Thank God for blood donors!  His surgery is scheduled for 10am eastern time.  Brandon and I are both anxious and ready for the surgery to be over with.  As a mother I am already dreading handing Carter over to the O.R. staff.  He usually cries and holds on as tight as he can to my shirt. Sometimes I think that is the worst part.

Please pray for Carter today.  Pray for his body to tolerate the surgery and to heal without complications.  Pray for guidance and wisdom for the two Surgeons and two Urologists involved.  Please pray for patience for both Brandon and I.  Thank you all so much for all of your continued prayers!

For I know the plans I have for you, "declares the LORD, "plans to prosper you and not to harm you, plans to give you hope and a future. Jeremiah 29:11

The Next Step...

We received news that we have patiently been waiting on for 5 months now.  It was not the news we were wanting to hear although we knew it was coming.  We wanted to hear that it was something small and there was a quick longterm fix.  We heard the opposite of that and our surgeon here thinks that Carter's bowels are not aligned correctly.   He thinks that after birth things were not put together properly.  He feels this is why Carter was only 14 lbs at a year of age and once he started being IV fed he shot up to 22 lbs. This happened because he was not having to rely on his intestines.  They did do multiple biopsies of his intestines that should help them determine what is what. The surgery is going to be intense for Carter.  They will need to cut through his bladder and abdominal wall to get to his intestines.  They will then start from the begining, going through all of Carter's intestine piece by piece.  They may need to remove some of his bowel and they are certain they will need to move things around.  The surgery is expected to last 6-8 hours.  It will take two pediatric surgeons and a Urologist.  Carter will be placed in ICU for a few days and possibly kept on a ventilator for a few days to allow him to heal.  He will then be transferred back to the floor we are on now and will start a long recovery process.  Although we are ready for him to be well, it is going to be an extremely tough surgery for Carter and we are not looking forward to it.  The surgery is scheduled for Monday morning.

The idea of closing Carter's bladder and fixing his pelvis has been thrown around, although it would only be performed if everything looked perfect.  The Urologist here is 99% sure that is not going to happen.  Brandon and I both have decided that right now is not the right time to close his bladder and  have refused for this to happen.  We both feel that it is too much on Carter at one time. The Urologist here and at Johns Hopkins have both agreed that we should wait.  Brandon and I are still unsure if we will transfer all of Carter's urology and orthopedic needs to Cincinnati.  We are trying to take everything into consideration before doing this.  Johns Hopkins has a higher success rate of bladder closure than Cincinnati and we are known patients to them although it would be really nice to have all of Carter's care performed in one place.  Cincinnati Children's in number one for G.I. issues.  Cincinnati Children's and Johns Hopkins are two of the leading institutions for taking care of Cloacal Extrophy Children.  We just have to make sure we chose the right place to take care of Carter.  Please pray for peace and wisdom for both Brandon and myself. Pray for wisdom, knowledge, and understanding for everyone involved in this procedure here at Cincinnati Children's Hospital. Pray that we will make the right decisions for Carter's health. Please pray Carter tolerates the surgery well and this will fix his intestinal problems. Above all else know that God can if it is His will!

18 months

Carter is 18 months old today!  It's hard to believe time has passed so fast these past 18 months.  Carter is 29 inches long and 22 lbs.  He loves to moo like a cow and quack like a duck.  He just started trying to stand on his own and can do so for a few seconds.  He finally started saying da-da on a regular basis.  He can say mama, dada, bye-bye, hey, moo, quack, i want my mama or dada and no no.  He loves to grab things and love on them.  He is extremely sweet and still very much a mommy's boy.  His favorite thing to do is walk with his walker or hold onto my pant legs and walk.  Today we were fortunate enough for physical therapy to bring him a walker.  He got to walk in the hallway for the first time and he LOVED it.  The walker is a little to tall for him, but he still did really good.  Carter had a really good day today!  Thank you all so much for all of your continued prayers for Carter! 

Here is a short video of Carter walking in the hallway.

He Is a Normal Little Boy Trapped In a Not So Normal Body...

I first want to start by saying a BIG thank you to everyone who ran or walked for "Team Carter" today in the rain!  We, along with everyone at Blair E. Batson, say "Thank you!"  Today, Carter has started back on formula through his J-tube, he has vomited a couple of times since starting the feeds.  His g-tube, which allows the J-tube to vent, has had a dramatic increase in fluid.  I am trying to stay optimistic that he will be able to tolerate his feedings now that we are irrigating his bowels, but i'm just not sure that he will.  We are irrigating Carter's bowels every four hours, meaning we remove all of his stool for him.  Kinda gross I know, but hey whatever works!  This is only a temporary fix, until they can figure out all that is going on with Carter's bowels. The incision that was infected a few weeks ago looks like it is trying to get infected again, so we are keeping a close eye on it.  Hopefully, Carter will tolerate the feedings and we can turn his TPN and lipids down.  The biopsy results should be back sometime this next week. We hope they will give us more insight into what's going on with Carter's intestines.

I have had so many questions about Carter lately, regarding not only his neurological status, but his birth defects.  I felt I should describe his condition a little more.  Carter was born with his intestines, part of his liver and bladder on the outside of his body.  He was born with an imperforated anus and spinal defects.  His intestines and liver were placed back inside his body.  He had an ostomy made and eventually his spinal defects were repaired.  He is still living with his bladder on the outside of his body and will until we figure out all of his intestinal issues.  He's kind of a miracle, if you can't tell! :)  Neurologically Carter is perfectly fine.  He is a normal 17 month old little boy.  He loves to throw things, be thrown around and do all little boy things.  He is a normal little boy trapped in a not so normal body.  I think him being neurologically normal has made all of this a little harder.  Carter will continue to have surgeries throughout childhood and into adulthood. We hope to get the majority of them over with while he is young.  As hard as it is to say it, this will be a life long battle for Carter.  If you saw Carter today without all of the tubes attached to him, you would never know there was anything wrong with him.  He is very intelligent.  To Brandon and I he is perfectly normal.

I have also had a lot of questions about our life because I guess basically living in the hospital is not normal for everyone.  Monday will mark 5 weeks of this hospital admission, not all in the same hospital, but 5 weeks of being in the hospital without going home.  We have been back and forth from home and the hospital for the past 5 months. I think we have adjusted well.  We do miss our poor dogs, but we know that we are right where Carter needs to be.  We were very fortunate this time, knowing that we were going to have an extended stay they have moved us into the "Presidential Suite".  The room is about two times larger than the last room, Carter has a play mat he can get down on and crawl and it has a bathtub.  Carter's favorite part of the day is bath time. After cleaning the tub multiple times, he gets to take a bath.  This has made a huge difference and it has made him feel more at home.  Carter was able to be disconnected from the monitor a few days ago, so he can now go on wagon rides.  Another one of his favorites!  We strive knowing that we will one day be taking home a much healthier little boy, even if it means living out of a suitcase and sleeping on a not so comfortable bed. He has a plan for him and we are just ridding along watching it unfold.

Before leaving Jackson, I did an interview with a local radio station to benefit Blair E. Batson.  I answered many questions and talked a lot about our multiple stays until the last question.  I was asked "What is your overall goal for Carter?"  I was honestly stumped and didn't really answer the question.  I guess I have been so caught up on making it day to day that I have not thought much about the future.  It really bothered me that I was unable to answer the question, and I have since thought about my goal in life for Carter.  My overall goal for Carter is to be a light to Heaven. To be the kind of person that others can see Jesus in, to be a tool of God's in leading others to know Him.

His life is not always going to be what everyone else considers normal. I hope that he will always fall back on his relationship with the One who created him.  So, Carter in 10 years when your reading this I want you to know that God created you just like you are for a reason and no matter what anyone else here on earth tells you. Know that God created you perfect. Just like He wanted you!  The body you have now is only temporary, and you will one day have a new body.  He loves you and you have a big purpose here on earth... just as you are!

Carter's sweet friend Lily, who also has OEIS Complex sent him flowers and some treats!  It was so sweet of her and they have made our room smell so good!  Here is a link to her blog

Here are a few pictures of our home away from home...
 Carter on his mat.. throwing toys!!

 The wagon and our rocker.
Carter's mat with daddy's bed behind him.

Scope results...

Today Carter had a scope of his entire GI system.  He was scoped from above and below, and everything from above looked great.  The G.I. Doctor and surgeon both performed the scope themselves.  They saw nothing wrong with Carter's stomach or pylorus.  They did do a few biopsies just to make sure everything was ok. Although everything looked good from the topside, they did find multiple problems from below.  The first was a stricture (narrowed area in his bowel) about 13cm's into Carter's bowel.  The abnormality with this stricture was that it would not dilate and the tissue looked white. This means it is not healthy tissue.  The next problem they found was a very dilated area in Carter's bowel.  This was unexplainable and right now they have no idea why it is so big.  The doctors also feel that the intestine that was reattached could have been attached backwards.  Another possibility is that the tissue that was reattached is not colon, and it could be some other type of tissue.  To put it quite simply, there are a lot of different things that could be going on with Carter's bowels.  The multiple biopsies and other tests performed over the last few days should give us more details about what is going on.

The surgeon did place a large red rubber catheter into Carter's stoma that goes past the added length to Carter's bowel.  He or the nurses will come up in a little bit to teach me how to irrigate the tube and remove the stool from Carter's bowels.  I will need to do this every 3-4 hours day and night.  This will allow Carter's bowels to empty and hopefully he will be able to tolerate a small amount of formula and we will be able to decrease his IV nutrition.  This is not a permanent fix although we are hoping it will buy us a little time to figure everything out.  Please pray the irrigation of Carter's bowel will work and we will be able to turn his IV nutrition down.

Our surgeon informed us that he will not send us home until all of this is figured out and Carter is thriving.  He told me it would be unrealistic to think that Carter would not continue to need TPN and lipids to an extent over the next year, although he hopes that they will only be supplemental to Carter formula feeding.  We were very encouraged after speaking with his surgeon and GI doctor today.  They gave us hope that no one else has in the past 5 months.  Hope that Carter will get better and together we will figure all of this out.  Thank you all so much for all of your continue outpouring of support.  Please know that even though I may not write you back (I tend to be a bit busy these days) I read each and everyone of your comments, texts and e-mails.  They mean so much to us and we are extremely thankful.

On a more positive note, Carter has started trying to stand by himself some.  Here is a cute video I took today before his scope.

Happy Valentines Day!

God sent to me an angel,
it had a broken wing.
I bent my head and wondered
“How could God do such a thing?”
When I asked the Father
why He sent this child to me,the answer 
was forthcoming,He said 
“Listen and you’ll see.”
“My children are all precious,
and none is like the rest.
Each one to me is special,
and the least is as the best.
I send each one from Heaven
and I place it in the careof those
 who know my mercy,
those with love to spare.
Sometimes I take them back again.
Sometimes I let them stay.
No matter what may happen
I am never far away.
So if you find an angel
and you don’t know 
what to do,remember,
 I am with you,love is all I ask of you.”
-Paul Damman

Carter's Big Day!!!

We have made it to Cincinnati!   The medical transport went very well.  Carter was excellent during the flight. The only time he had trouble was loading and unloading.  He had to ride in a car seat the entire time.  Since I would be unable to hold him, I thought for sure he would cry the entire time, but he didn't.  The nurse practitioners and respiratory therapist were very sweet and let me stay close to him the entire time.  He passed out about 30 minutes before landing.  Here are a few pictures from Carter's big travel day.

We arrived to the hospital and were greeted by many staff members.  Just as a precaution they decided to take a x-ray of Carter's PICC to make sure it was in the correct spot.  They determined it was in about a centimeter too far.  I pulled the line back a centimeter and they got an x-ray.  It showed that Carter's PICC had migrated to his other arm (it is suppose to be down by his heart).  They wanted me to pull it back again to see if it would migrate itself back down by his heart, this time it went into his neck.  This all occured from midnight to 3 this morning!  It was a mess and resulted in Carter having another PICC line placed today.  Of course, he had to have and IV placed in the meantime.  This was an event in itself.  To say the least, Carter has had an extremely busy day!  All of Carter's healthcare team rounded at the same time this morning.  It was AWESOME to have all of them here at the same time going over everything.  Carter then had a barium study that lasted about 2 hours.  Once we got back to the room it was time for him to have the PICC placed.  Carter has been so good today, especially saying he is running off of less than 5 hours of sleep last night.  The PICC placement went great and we are now using his new PICC line.  We are all running low on energy and hope to have a very restful night!  Thank you all so much for all of your continued prayers.  We are extremely thankful for each and every one of them!

Here are a few pictures from Carter's big day!

A little nervous at takeoff...

A little nap...

A little play...

A few smiles...

Another nap...

A view of the clouds...

About to land...

About to unload the superstar...

In the ambulance on the way to the hospital.

The "plan"...

Carter has done well the past few days, most of our "events" have come from travel issues. I am happy to say now (fingers crossed) that Carter and myself will be leaving UMC Monday morning at 10 am. The UAB AirCare team will be flying us to Cinncinati.  Hesitantly, we booked Brandon a flight the same day and he should arrive Monday night. The so called "plan" is for Brandon to stay with us for the first two weeks and then he will return home to go back to work and my Mom will come stay. Brandon has family that lives in Ohio, about 3 hours away and we are planning for them to come visit as well. We are excited about this, since they have never met Carter.  Little by little Carter's personality is peeking back into our lives.  He is not blowing kisses or waving bye-bye to all of the nurses yet, but he has started mooing like a cow and quacking like a duck.  He loves to put his hands together and bow his head like he is praying and I have to say it's the sweetest thing!  We have yet to figure out how he can hardly talk but let someone come in to try to do something and if I'm not right beside him he says "I want my Mama!"  I have a feeling he can say a lot more than we think.:)

I know most of you reading this will be SHOCKED to read this, but the last two days I left Carter with my Mom for about two hours during his nap time and went to do a few things that I really needed to get done before leaving Mississippi for a month! For all of you that don't know I usually do not leave Carter's side, hence the reason he has a bed instead of a crib when he is admitted into the hospital. I literally sit by him 24/7. I am his comfort and it is the only way he will rest and I wouldn't have it any other way. So whatever works I do. I did mention before that he is a little spoiled, didn't I? So anyways, while out of the hospital, in the real world I seem to think more clearly. Today I started to wonder if both Brandon and myself were in denial. Here we are with our child about to be flown in a jet to another state, because no one in Mississippi knows how to treat him. We are just sitting here! Were not running around freaking out, we are just sitting here! Is this normal? Have we seen Carter sick for so long that we just don't see it anymore? Is there something wrong with us? Now I'm not going to say that we don't worry, but I honestly believe God has spun us into our own little world to protect us.  It's undescribeable and I have to say at times I worry that I am not worried!

Brandon and I both see Carter as Carter.  We do not see a sick little boy who is living with his bladder on the outside of his body, or has severe intestinal issues.  He is just our Carter.  A cute, sweet, very intelligent 17 month old little boy that we love more than words could ever express.  I guess we see Carter as God sees and created him.  PERFECT!  As frustrated as we get with his not so perfect body, it's the one God chose to give him and in time we will figure out all of it's kinks and straighten them.  So I guess if we are in denial about everything that is going on right now, it's ok.  If that's how we are managing right now we will just have to stay in denial.  I hope to never look at Carter and see a sick little boy.  I hope I continue to look at him just the way he is PERFECT!  It's only by His blood and through His mercy that Carter was created this way and it will only be through His blood and through His mercy that Carter will one day be healed!

For the first time in MONTHS Carter wanted to put something in his mouth, he loves salt and put a chip in his mouth.  He would not swallow it, but he put it in his mouth and sucked the salt off of it.  This is a big deal and we were so proud of him!


MOM! You are not suppose to take this apart!

NOT happy about his hair-do!


To say the past few days have been crazy is for sure an understatement. Brandon flew to Baltimore then to Louisville and then drove an hour to Cincinnati, all in an effort to meet me and Carter in Cincinnati. Due to miscommunication and an influx in patients, Carter and I were unable to travel to Cincinnati. After Brandon traveled to all of those places, he had to turn around and travel back home. It has been a stressful mess to say the least! The plan as of right now is for the medical transfer to take place on Monday or Tuesday. This time Brandon will not be leaving the state of Mississippi until Carter and I are in the air. The good news is that we are all safely back together in Mississippi. I want to thank each of you for your continued prayers. They mean so much to us! James 1:2-8

Waiting to be transferred!

Prayers please!!!

This morning we were informed that Cincinnati had an increase in patients over night and Carter would not be able to be transferred today. Brandon is already on a flight traveling there, along with ALL of our luggage (including most of Carter's supplies). They also informed me a winter storm was scheduled to arrive in Cincinnati tonight and they were unsure if the jet would be able to fly. Please pray that a room will open up today and Carter will be able to be transferred. I really do not want him sitting here another week without the proper treatment he needs. Please pray that Brandon arrives safely and we can figure out all of this asap! Thank you all so much for your prayers!

New places and new hope...

Today we found out that Carter will be transferred to Cincinnati Childrens Hospital tomorrow. We are unsure if we will transfer in the morning or afternoon. A medical jet from UAB will be transferring Carter and myself. They only allow one person to ride with the patient, so Brandon will be flying commercial. Please pray that everything will go as smooth as possible and that Carter will tolerate the flight well.
We have no idea of what to expect, but are praying for the best. Please pray for answers and wisdom for the Doctors we are about to meet. We know God can heal and that he has a very special plan for Carter. We are so ready for all of this pain to just be a memory. We know that through the power of prayer and our amazing God it soon will be. Thank you all so much for your faithful prayers, I know God hears each of them!


Carter has done really good the past few days.  The plan is for a medical transfer (flying in a jet, thank GOD!) on Tuesday or Wednesday.  Just thought I would share a little bit of "cuteness" to brighten up this gloomy day! :)

 A little singing...

 PLEASE put in my Veggie Tales!

 The NOT so happy Birthday boy, but isn't he cute?!