Good Friday

     Carter has battled pain and fever throughout the day. The night, last night, was full of short interrupted bursts of sleep for Meagan and I, but especially Meagan. Carter had to be given a blood transfusion that began around midnight when labs had to be drawn.  He had to have an IV started because blood could not be given with all of the medications he is receiving in his PICC line. Carter's veins are extremely damaged due to so many sticks and IVs in the past that they were unable to start one in surgery on Wednesday.  We were extremely fortunate that the hospital has an IV nurse.  She came in with a vein finder and was able to successfully place an IV in the only arm Carter has available to place it.  God heard our prayers and she was able to get it on the first stick. In and out all night came nurses and doctors to prepare our little boy for the blood that would help him on his path to healing. Nervousness and anxiety tend to be the bigger issues for our baby than actual pain. In his many stays in hospitals, he has learned that people coming in and out usually means poking, sticking, and other unpleasant things. He wouldn't let his mama leave his side.

     Today has been more of a battle with comfort for Carter. He doesn't seem to be able to rest.  He is uncomfortable from having to lay flat on his back and stay still.  He is still receiving oxygen and the blood transfusion is complete. Medicines are still being adjusted and arranged in hopes that some peace and comfort can be given to our sweet little man. The nurses here found Meagan a rocker/recliner that slides perfectly next to Carter's bed, so hopefully she will be getting a little more rest than the previous nights. We are thankful and blessed that God has made the way possible for us to be in a place that is extremely comfortable taking care of a baby like Carter and all of his needs. It has been a blessing that we can be here.

     While Carter was getting the blood in the blood transfusion, I thought about the blood of Jesus on this day many years ago. The blood that was shed to give us hope and eternal life. The blood that washed away our sins. The blood that made a way for imperfect people like me. God didn't lead His Son to a cross to pour out his blood and sinless life for perfect sinless people. He did it for the sinners of the world to have a chance at living in His Kingdom forever. So over the next few days as we wait to celebrate the day the stone was rolled away and the grave was empty, remember that the blood that was shed on that cross was for all! It was God's way of throwing us a lifeline. No one is excluded from His grace if they believe in the Father, The Son, and The Holy Ghost! "For God so loved the world, that he gave his only begotten Son, that whosoever believeth in Him, should not perish, but have everlasting life. For God sent not His Son into the world to condemn the world; but the world through Him might be saved" - John 3:16-17

We have been covering Carter with his beautiful prayer blankets!

Update 3/28/2013

Sweet little Carter had a long night and day. The anathesia started wearing off and he wanted to get up and be held. He reached up to me and tried to pull up on me. I am positive that if he could have gotten a good grip, he would have pulled himself up. He woke up about every hour to two hours. Sometimes crying out in pain and sometimes making sure Brandon or I was sitting at his bedside. We took shifts sleeping in a chair beside his bed holding his hand all night. They increased his Valium, morphine and his Narcan(it helps with itching caused by the morphine). The increase has really seemed to help and he has rested a good bit today.  This afternoon he woke up extremely irritable only an hour after receiving Valium.  We could not get his heart rate to stay below the 200's and his oxygen saturation was staying around 90% (his oxygen saturation is NEVER under 97%).  I took his temperature and he had a 102 fever.  The nurse gave him Stadol, Tylenol and put him on a little oxygen.  The medication lasted for about and hour in a half and then he was back up miserable.  Thankfully, it was time for his Valium. She just gave him his Valium and we are waiting on the Doctor to decide what he is going to do.  He already has lab work ordered at midnight tonight to make sure his blood counts are ok. I imagine they will check to make sure he is not getting an infection, too. 

Today before all of this occurred, Carter's nurse taught us how to do pin care. Pin care is cleaning around the rods and pushing back any skin that may be trying to grow around the rods going into his pelvic bone(part of his external fixators). It is an extremely painful procedure, but our little tough guy did great today. He only cried during the beginning when the dressing had to be removed. I was amazed at how great he did. He hardly budged. They also added more weight to Carter's traction today. The traction has made me more nervous than anything. There are weights hanging off the end of the bed that are connected to the braces that are wrapped from his toes to his thighs. They hang right where everyone walks. If they are adjusted too quickly they could cause Carter's hips to come out of socket. Thankfully everyone has paid close attention and made sure not to get to close to them.

Carter has really been a trooper through all of this. The highlight of last night was when they allowed me to put Carter's blankets and pillow from home on his bed.  When I was done he smiled really big with his little eyes still closed.  Hopefully, we will get the fever figured out and manage his pain well tonight. Thank you all so much for all of your prayers and sweet words.  They have truly made all of this so much easier. Please keep them coming! As always...To Him be the Glory!

His sweet little legs wrapped and in traction. His left leg is much more swollen than the right and he has not moved his toes on his left foot much. We are praying once we get his pain under control he will start moving them a little. 

He gives strength to the weary and increases the power of the weak.

Isaiah 40:29

Surgery Update 3/27/13

Carter's surgery went well. They broke his pelvic bone in four places and put him in external fixators(rods that are screwed on one end to his pelvic bone and the other on the outside body so it can be manipulated in the direction they want his pelvis to heal) traction(weights holding his legs to the end of the bed) and his legs are splinted and wrapped up to his thighs. They did have problems placing his PICC line, but thankfully they were able to get it in. The main problem today has been pain control. They decided to see how he could tolerate going to a monitored floor and being followed closely by the pain team. He has a PCA pump with morphine. It has a continuous dose, meaning he is constantly getting a little bit and then I can push it every 10 minutes to give him more if he needs it. He is also getting Valium every 4 hours and Stadol every 4 hours. We have only had a few times today that he had tried to get up and move. Once they gave him the Valium or Stadol he went right back to sleep. Hopefully, these medications will still work as the anathesia wears off. If not Carter will have to be transferred to PICU and placed on a ventilator. I have been surprised that he has been allowed to have as much sedation as he has today and not had to be admitted to the PICU. We are on a monitored floor and a nurse comes in every 2 hours to check him. The plan for tonight is for Brandon and I to take shifts sitting at his bedside, making sure he doesn't wake up or try to move. It is crucial that he stays completely flat on his back and completely still right now. If he moves, he could shift his traction which could damage his pelvic bone and lead to another surgery.

Brandon and I are so thankful for all of your prayers. We honestly could not do this without them. Keep them coming! As always.. To Him be the Glory!!!

Even sedated he wants one of us right by his side holding his hand.


My flesh and my heart may fail, but God is the strength of my heart and my portion forever. Psalm 73:26

The Day Before Surgery...

Sorry for the lack of updates.  We have been spending as much time with Carter as possible.  His appointments all went great. We have to arrive at the hospital in the morning at 5:30 and surgery is scheduled to start at 7:30 or 6:30 central time.  The length of the surgery will depend on how Carter does.  Carter is only suppose to have his osteotomies(hips broken) and PICC line placed tomorrow. They will not touch anything else.  He will go to PICU after surgery.  Our hearts are aching so much right now.  I do not think there is anything harder than completely handing your child over to God, but we will hand him over in the morning trusting and believing that He will protect our sweet little boy.  Please pray for God's hands to guide the entire surgery team through the surgery. Please pray for Carter to see and play with angels while this is going on and to feel NO pain.  Thank you SO much for your prayers tomorrow my sweet little boy needs them! I am about to go bathe and rock my sweet little boy for the last time for a while.
I do have a Facebook page setup for Carter. I will try to update it throughout the day tomorrow. Here is the link:
Carter's Facebook Page

Were here!

We made it to Baltimore yesterday. Carter was wonderful on the flight and passed out as soon as we got in the taxi taking us from the airport to the hotel. The Children's Home and Ronald McDonald house are both full. Thankfully, due to my parents and a wonderful friend we have a hotel room. I spoke with the Child Life Specialist and she said both Brandon and myself can stay with Carter in the PICU the entire time. This is a huge relief! One of my biggest fears is having to leave him and him either waking up or someone doing his care wrong. I am SO happy to know we can stay with him 24/7.

Today was all about Carter. We took him to the aquarium and on a short stroll around the Harbor. It is still really cold here so he was not able to stay out long. He had a great time at the aquarium. Tomorrow and Tuesday are filled with Doctor appointments and Carter's surgery is scheduled for Wednesday.

Carter knows something is going on, but he is just not sure what. He has been SO happy the past few days, even more happy than usual. He will start playing and break out in laughter, almost falling over from laughing. He is such a sweet and loving little boy. My heart is breaking knowing what he is about to go through, but I know his quality of life will be so much better after the surgery. He will be able to run for as long as he wants without his hips hurting. He will be living with all of his organs inside his body for the first time in his life. We just can not wait until all of this is over and he is standing strong with an amazing testimony. God has been so good to him. He has given him so much. No matter what the circumstance we give God all the Glory!

My sweet friend Laura Quick with Flutterby Photography took a few pictures of Carter this past Sunday. She did such a great job.  Here are a few of the pictures.  She did such a great job.  They will be pictures I will cherish forever!

The Easter Bunny knew that Carter would not be feeling well next Sunday so he dropped off a few gifts for him today. He has not put down his Elmo or Count. He loves them!

BIG Changes!!

Today has been a busy day! After working last night, I came home this morning to a sweet little boy laying in my bed ready to watch Toy Story. I laid in bed and snuggled with him for a few minutes, and his daddy got him up to get ready for his teacher to come work with him. I had a dentist appointment this morning at 11, so I decided I would lay down and try to get about an hour of sleep. As soon as I closed my eyes, my phone rang. It was Johns Hopkins. The nurse on the phone started out by telling me how sorry she was, and at that point I knew it was not going to be good. The scheduler that scheduled Carter's surgery only scheduled one surgery and he is having two. The problem is that Johns Hopkins is a leading medical facility in the United States and O.R. time plus the fact it is taking multiple Doctors to do Carter's surgery is just plain hard to schedule. She basically told me there was no way to keep April 10th (less than 4 weeks away)as the date for Carter's first surgery. We would need to come up NEXT weekend and have the surgery on March 27th or go on the waiting list again. We have waited over 6 months for this surgery and the older Carter gets the harder and less successful the surgery will be. So going on the waiting list is just not possible. Brandon quickly got on the phone with his work and I talked to my work. I booked a new flight and called The Childrens Home, where we hope to be staying. The Children's Home is currently booked, but we are praying HARD they will have a room free up by next Saturday. Not only do I not want to have to pay for a hotel, but the hotels are not walking distance to the hospital and with Carter being so sick I can not imagine having to catch a cab to go to our hotel to take a shower. Fortunately, my parents are coming up for the first week, so we can put our stuff in their room and shower in their room.

So the new plan is we will leave next Saturday the 23rd for Carter's BIG surgery. Sunday we hope to get unpacked and settled in. Monday and Tuesday are full of appointments and Wednesday will be surgery day.

Carter will have 2 surgeries while we are there. The first surgery will be his osteotomies. Our pelvis is round and Carters pelvis is open like a book. They will break his pelvic bone in four places and try to close the book. Making his pelvis more round. He will go to PICU after surgery and for 4-6 weeks our Doctor will come in and stretch Carter's pelvic bone. This will allow for new bone growth and make his pelvis round. During this 4-6 weeks Carter will be in traction flat on his back not able to move. This is an extremely painful surgery and process, so they will keep him sedated for most of the 4-6 weeks. After 4-6 weeks when they feel the pelvis is closed as much as they can get it Carter will go back to surgery. He will then have his bladder placed inside his body and a metal plate placed to hold the two sides of his pelvis together. He will go back to PICU after this surgery and will remain in traction until his bladder and bones have healed. This could take anywhere from 2-6 weeks. Once the healing process starts we will start reducing his pain medication and allow him to go through the withdrawal process from being on so much sedation and pain medication for an extended amount of time. Once he is through this, we hope to get discharged! Our hope is that we will be home in June.

Just writing all of this is hard. There are so many risks with the surgery. One being that Carter may not be able to walk afterwards. He will have to relearn head control, how to sit-up and how to walk all over again. Talking about my 2 year old going through withdrawal brings tears to my eyes. The fact that I will not be able to hold him for over a month scares me to death.

Thank goodness for Faith and an almighty God. Without my faith, I would not be able to deal with any of this. We know we have some very tough days ahead and this journey is about to get really hard, but we also know it has to be done for Carter to survive and he will be in the best hands in the world. I know Carter will fight with all he has and he will get through this. Thank you for all of your prayers for Carter. Keep them coming! He needs them now more than ever!!!


Carter says Thank you from the bottom of my heart for all of your prayers!!

“ O Lord my God, I cried out to You, And You healed me. ”
- Psalm 30:2

Mommy Page Interview

A few months ago I was contacted by MommyPage.com. I had the honor to do an interview with them. My hope is that it will bring more awareness to O.E.I.S. Complex. To read my interview visit MommyPage.com or click here
Mommy Page Interview!
To Him be the Glory!

Happy Valentines Day!

We are celebrating Carter's first Valentines Day at home!
His first Valentines Day was celebrated at Blair E. Batson recovering from spinal surgery.






His second Valentines Day was spent at Cincinnati Children's Hospital.









His third is being celebrated at HOME!!!



Can you tell he loves Toy Story?








Thank you for all of your prayers!





Then they cried to the LORD in their trouble, and he delivered them from their distress. He made the storm be still, and the waves of the sea were hushed. Then they were glad that the waters were quiet, and he brought them to their desired haven. Psalm 107:28-30

Learning to pray...

Has it really been a year? I get tears in my eyes just thinking about it. On this day last year Carter was airlifted to Cincinnati Children's Hospital. I flew with Carter in the small jet supplied by The University of Alabama. Brandon flew commercial and arrived at the hospital just hours after we did. It was a very scary experience. We were leaving the hospital that had been home to us for some time. The hospital where I worked, where everyone knew Carter and the hospital we called home for many months. We were also leaving behind a wonderful Doctor. A Doctor that stuck by our entire family's side through it all. I can honestly say I do not think Carter would be alive today without him. We will never be able to tell him thank you enough.

We were leaving all of these things behind in desperation for our son to survive. We had already travelled to another leading medical facility where we were given little hope. We were desperate! When we arrived in Cincinnati, multiple Doctors from different specialties came to examine Carter. I will never forget one of them. She was a younger lady and she introduced herself as being part of the transplant team. At this point no one had officially said Carter needed an intestinal transplant or that it would really be an option for him. She came in and sat down on the bed beside me and Carter. She told us how glad she was that we arrived safely. She then began to talk about the intestines and the initial steps to working towards an intestinal transplant. I looked at her almost cross eyed and said, "intestinal transplant?" She then realized that this was the first time it had been discussed. She immediately apologized and walked out of the room. So, there I sat with Carter alone in an unfamiliar hospital in a town that I had never been to before. I was completely exhausted from being up day and night for months in the hospital with Carter before being transferred. My husband was on an airplane with no way to contact him. I sat there looking into my sweet little one-year olds eyes. His little body was so pale and so tired. That's when I began praying for God not to keep him here with me, but for God to do what's best for him. For months I had selfishly prayed for God to keep him here on earth with me. I did not want to live without him and would do anything to keep him here. I begged and pleaded with God. It was until that moment, on one of my weakest days I realized what I had been doing. I wasn't praying for God's will. I was praying for my own will. Isn't it amazing how God will come to you in your weakest moments? As soon as I started praying for God's will I began to feel relief. I knew we were in the right place and that God would take care of Carter.

So, here we are a year later. I have a 2 year-old doing flips off of the couch laughing and running everywhere. I am thankful God had other plans for him. To Him Be the Glory!!!

Last years BIG trip!

How could it be...

I am not even sure where to start. I am not even sure I should post this, but have I felt a sense of guilt by not letting everyone know. Carter has not been feeling good for the past few days, so I decided to take him to his Pediatrician to make sure everything was ok. We are still not sure exactly what's going on with Carter, but are praying its just a virus. We did however receive the results from our pediatrician on Carter's MRI he had back in December. We are still waiting to hear Carter's Neurosurgeons opinions, but are completely shocked and lost for words from the report our Pediatrician has received. I will first start out with Carter's spine. Everything seemed to be the same as it was last year and there are no real changes. This is great news. This means his spinal cord has not retethered and the repair of his myelocystoceles is stable. We were thrilled to hear this. The report of Carter's brain was not so great. It was heartbreaking, painful and I honestly got the same knots in my stomach the day I did when Brandon and I found out about Carter's birth defects. The MRI of Carter's brain showed there was an absence of his septum pellicidum. Absence of his septum pellicidum, meaning part if his brain is not there! What in the world?! How is this possible? How did Carter have a major spinal surgery at 6 months and this was not picked up on? How in the world did I have an ultrasound twice a week for the majority of my pregnancy and this was not noticed? How has my precious child survived this long with EVERY one of his organs being effected in some way by these awful birth defects? How did no one know?! These are all questions Brandon and I have asked over and over again.

We are still in shock and we are praying for a miracle. We have had many sleepless nights and are still just really confused. I think most people expect us to be angry with God, but we are not. We are so thankful God has given us this precious child. He has trusted us with so much and since the beginning we have promised to share our gift and give God all the glory. Although our hearts are completely shattered, we will not give up. This is just another journey. It is going to be a journey through a very unknown land. Neither Brandon or myself know much about the brain. Being a nurse I know some of the anatomy and a few things, but absolutely nothing about the septum pellicidum or absence of the septum pellicidum. I have done some research on my own and it seems like there is a wide spectrum of living without a septum pellicidum. Some children do not live past birth, some are in a vegetative state and some are mentally stable and live without any impairments what so ever. A lot of the things I have researched about it do not apply to Carter. In fact the only thing I have read that may apply to Carter is it can affect speech. The only real delay Carter has now is speech. He is still really struggling to talk although he is trying really hard. He understands everything we say to him and can even sometimes answer with sign language. He communicates, but he just does not talk. It kills me to think that he could want to say something and honestly not have the ability to say it. I have had a hard time finding a lot of information on the absence of the septum pellicidum and am looking forward to hearing from Carter's neurosurgeon at Johns Hopkins. So for now we will wait to hear from him. We have so many questions. I don't want to say anything for sure until I hear from him and get his opinion. Honestly all we know right now are the interpretations from the radiologist that performed the MRI.

We have known about it for a little bit now, but decided on processing it before telling anyone. No matter how hard all of this gets we will always love Carter with our entire hearts and we will both do whatever it takes to get him the best care possible. I know it might sound crazy, but I think things like this just make me love him even more. They make me realize just how special God really made him. If the MRI results are correct this means that Carter has survived 2, almost 2 1/2 years, with cloacal exstrophy and missing an area of his brain. As a mother who has been at his bedside through it all I just don't see how it can be possible. We are completely hurt, lost and confused for Carter. I am so hurt that he has to go through something else. I know God has a plan, but I would be lying if i said i did not want this for my child. He is such a sweet baby. He NEVER cries and loves life. He does not deserve this. No matter how hurt his little body may be God has him in his hands and we will continue to praise him for ALL of the blessings he has given us. Please pray for peace and patience as we wait to hear from Johns Hopkins. Thank you all so much for all of your prayers and as always.. To Him be the Glory!

Christmas... Really, Really Late!!!

I'm sorry! We have been extremely busy and I have not had enough time to update since before Christmas. Carter had a wonderful Christmas. It was the best yet! His favorite present was his Toy Story figurines. After opening them it was over. He only wanted to play with them and did not care about anything else. He still plays with them everyday! We also watch Toy Story at least once a day. He is still a huge Veggie Tales fan, but I have to admit it has been nice to have a Veggie Tales break!!! I hope everyone had a wonderful Christmas and a Happy New Year!!
I think pictures say a million words. Here are a few pictures from Christmas time last year and a few this year.
Last year...




This year...





Isn't our God Good?!
Luke 2:9-14
An angel of the Lord appeared to them, and the glory of the Lord shone around them, and they were terrified. But the angel said to them, "Do not be afraid. I bring you good news of great joy that will be for all the people. Today in the town of David a Savior has been born to you; he is Christ the Lord. This will be a sign to you: You will find a baby wrapped in cloths and lying in a manger." Suddenly a great company of the heavenly host appeared with the angel, praising God and saying, "Glory to God in the highest, and on earth peace to men on whom his favor rests."

MRI update!

Carter did great with his MRI. He was sedated for about 3 1/2 hours, so he was a little grumpy and drowsy last night. He woke up this morning ready to go and worked really hard with his speech therapist. The University of Mississippi is going to send the results to Carter's Neurosurgeon at Johns Hopkins, so I do not plan on getting the results for a while. Thank you all so much for all of your prayers!



Carter's self portrait he took on my phone! Cheese!

MRI 12/18/12

Carter went back for his MRI about an hour ago. It should take about 3 hours, so right now I am playing the waiting game. They used a mask to put him to sleep and then they were going to put him under general anesthesia. He fought so hard! It took me the Anesthesiologist and a nurse to hold him down while they let him breathe through the mask. They said he set a record for the longest fight. Poor baby has been sedated too many times!

The MRI is to make sure his spinal cord has not re tethered and to make sure there are no other spinal defects that could be causing the unexplainable vomiting. They are going to send the images to his Neurosurgeon at Johns Hopkins, so I am not expecting results any time soon. We are praying everything is stable and we can completely focus on his "big" surgery in April. Thank y'all so much for all of your prayers for our sweet little gift! I will try to update later this afternoon.

Here are a few pictures from this morning...

Just an update...

I haven't updated in a while and I just wanted to catch up! Carter has been doing great. He did catch the flu and was down for about a week, but thankfully he bounced back pretty quick and is doing really well now!

I spoke with our child life specialist at Johns Hopkins yesterday. She is helping us get everything ready for Carter's big surgery in April. She submitted all of our information to the Children's House and Ronald McDonald house. These are both homes that we may be able to stay at while we are there. We are praying we will get into the Children's House. It is within walking distance of the hospital. The Ronald McDonald House is not within waking distance and we would have to take a shuttle back and forth. Hopefully the Children's House will work out. She also gave me a few more details about the surgery. She told me they will wait and put a PICC line in Carter until the day of surgery. She also said that I will be able to carry him back to the operating room and stay with him until he is fully asleep. I know that this is just a small thing, but knowing that Carter will be asleep for weeks it really warmed my heart!

I decorated for Christmas the day after Thanksgiving and Carter is in love! In love with the Christmas Tree! He is still not talking, but just by looking at him you can tell exactly what he wants to say. He grabs my hand and leads me to the tree about 50 times a day. We stand by the Christmas tree using our excited sign language and admire its beauty. Carter has even been nice enough to add a few of his own ornaments this year! I recently found a Woody figurine and train in the tree. They were probably the cutest ornaments on the tree.

We are really trying to enjoy Christmas and the time we have with Carter right now. Brandon and I both know that in 4 months we will be begging for this time back. In our own selfish ways we really don't want him to have the surgery or maybe it's that we don't want to have to watch the pain he is about to endure. We know it is necessary, but its hard to think about the little boy that holds our entire heart having to endure any pain. The only thing that brings us comfort is our Faith. Our Faith that has already brought us and especially this sweet boy through so much. Faith that will bring us through again and Faith that no matter the outcome God will be with us. To Him be the glory!!!


Carter with his "hospital" tree. That I got to put up in our dining room this year! Yay!!!



Examining his Bob and Larry Christmas lights!



Silly boy!

My very own Elf dancing in the yard!