Tomorrow is the Day...

   The light is getting brighter at the end of this tunnel.  Since March 27^th ,we have not been able to hold Carter.  We have not been able to soothe him when he cried out in pain, rock him when he was restless at night or pick him up when he looked at me with his arms up in the air.  Thank God this part of the journey will come to an end tomorrow.  We will finally be able to hold him!  He has laid completely flat on his back since March 27^th.  To say that we are excited is an understatement.  He still has a LONG road ahead of him, but we are slowly making progress.  There have been a few changes.  Due to how agitated Carter has been the past few days, they have decided to take him to the O.R. tomorrow and completely sedate him.  He is scheduled to go to the Operating Room at 9 am.  They will remove his external fixators, the traction and wraps that are on his legs now.  They will cast his legs from his thighs to his toes and will place a bar in between them to keep him from opening is legs.  The procedure should only last an hour or two and should be one of his easiest trips to the operating room.

Our Orthopedic Doctor told us that they rarely have to cast patients like Carter, and they have not actually had to do it in about 5 years.  We have also been told that Carter has had one of the longest PICU stays that anyone can remember for a child with his condition.  I have actually been doing all of Carter’s care because the nurses down here do not have much experience with this surgery this far along in the recovery stage.  After talking with one of Carter’s nurses about how much he has been through in his short life, she asked if I ever wondered why all of this has happened to Carter.  He has one of the worst birth defects that you can be born with and still be compatible with life. He always has multiple complications with each surgery.  She was surprised when I told her No.  I never question why all of this has to happen to him.  It is not my place to question, and I honestly know God has a plan for all of his pain.  It is my responsibility to make sure I am living out God’s will for our family.  I am not going to say that is has been easy.  Watching your child suffer and knowing there is nothing you can do to help them is the most helpless feeling in the world.  We have breaking points, melt downs and crying sessions often, but we know it is all for a bigger purpose.  The good word says, "Be strong and courageous. Do not fear or be in dread of them, for it is the Lord your God who goes with you. He will not leave you or forsake you.” Deuteronomy 31:6.  We learned early on that the only way we would make it through all of this would be to rely and fully trust in God’s word.  We know that Carter still has a LONG way to go and our hearts were almost pulled out of our chest today when we were told he could easily spend another 6 weeks in the PICU.  It all depends on how well Carter does with the weaning process.  He has a lot of strong medications to come off of.  Please pray Carter’s procedures go well tomorrow and for him to tolerate the withdrawal process.  I hope my next post is full of pictures of Brandon and I holding and loving all over Carter!  As always… To Him be the Glory!!!

Day 4 was a busy day! I did not get a picture! :(

My Arms Will Soon be Full Again...

SEVEN days!! You read it right.  Seven days until my arms will be full again!  Carter’s traction and fixators will come off on May 22^nd.  We are beyond thrilled.  I can not wait to hold him!  He will still have a long road ahead of him, but I will at least be able to hold him in my arms.  I will be able to soothe him and comfort him. Something I have not been able to do since March.   Once Carter’s fixators and traction come off, his legs will be put in a cast.  They usually do not put a cast on, but Carter has proven how tough he is and they know how bad the withdrawal process is going to be on him.  They usually do what’s called the mer-man wrap after the traction and fixators come off.  The Mer-man wrap is an ace wrap from the hips to the toes.  It is used to keep the legs straight and from being pulled apart.  Carter is strong enough that he would more than likely take the Mer-man wrap off, which could cause damage and possibly cause his surgery to fail.  We all feel that placing cast will be a much safer option.  His cast will start at his thighs and go to his toes. There will be a bar between his legs that will keep him from opening or closing his legs.  Right now, we are not sure if they will be able to do all of this in Carter's room or if he will have to go back to surgery.

Everyone has told us to please understand that we still have a LONG way to go.  Carter still has to be safely weaned off of all of the medications that he is currently receiving.  We could easily be in the PICU another month.  Carter is on so much medication that his body will need to safely adjust to not having the medications.  He will also have some mobility restrictions that he will have to follow.  Another step of recovery is that he will have to have his Ureteral Catheters (Catheters that go up his ureters to his kidneys) removed.  They will do this then wait a few days and remove his supra pubic catheter (catheter that is draining his bladder).  After removing all of the catheters, the doctors will closely monitor Carter’s kidney and bladder function.  Carter’s bladder has never held urine, so we are not sure how it will tolerate urine.  There is a chance that his urine could reflux back into his kidneys and cause kidney damage.  They will do many ultrasounds and monitor his urinary output to make sure this does not happen.  Carter will not be able to leave the PICU (Pediatric Intensive Care Unit) until he is completely off the Dexmedetomidine and Midazolam. All of his other pain and sedation medications have to be scheduled every 4 hours also. 

We know Carter still has a long way to go, but are just so happy that we will be able to hold him.  Our Nurses and Doctors have made a countdown on Carter’s care board in his room.  It currently says 1 week. I am ready for tomorrow when it says 6 days! They have all repedeately told us to get ready for a fight.  The weaning process is going to be tough.  Our goal is to keep him safe while withdrawing.  Even if we are here another month or 3 months we will continue to patiently wait.  The countdown is on! As always…To Him be the Glory!!!

I am positive if Carter knew what is going to happen in 7 days he would be making some of these faces!!!

Update... May 13th, 2013

I feel like we are sailing.  We have days that are smooth sailing and then swoosh! We hit a storm, and we are thrashed back and forth.  Carter is no longer dealing with pain issues, but he just wants to get up.  He has been laying in the bed, flat on his back, with minimal movement for 7 weeks now.  He has had enough!  Carter has started to get silly.  He usually wakes up and starts dancing, which leads to wiggling his booty and kicking his legs.  It will last a few hours and then he decides its time to get up.  Then, he gets mad that he cannot get up.  Carter’s Urologist and Orthopedic Doctor are discussing a few different options to continue to keep Carter still.  There are no other medications we can use without putting him on a ventilator, and with the recent history of Aspiration Pneumonia they do not want to complicate things further.  All off the Doctor’s are amazed that Carter has been able to breathe just fine with all of the medications he is currently receiving.  He should be in a coma, yet at times he is wide awake.  The medications that require him to stay in the PICU have not been very effective for Carter.  Everyone keeps telling us how strong he is.  Most children do not have much head control after this surgery because they lay flat on their back for so long.  Today, Carter decided he was going to sit up, and he had no problem holding his head up. He nearly sat up.  Everyone has been amazed.  We are so happy he is so strong and we know this is one of the reasons he has survived thus far.  Unfortunately, right now is not the time we need him to be so strong.  We need him to lay flat and still in the bed.  We are praying they will come up with a plan today.  Carter still has a LONG way to go, but we know he will get there.  

I have been asked the same question by so many people that I wanted blog and share my response.  I frequently get asked if I regret sharing about Carter’s condition or how we plan on explaining that he is different from other children.  I also get e-mails from other families asking how I feel about sharing Carter’s condition.  Well here is my response…

God made Carter for a purpose.  He did not make him to be hidden from the world.  He did not make him different.  He made him special.  He made him perfect. How could I ever try to “hide” Carter’s condition and expect him to not feel ashamed of himself?  Each part of Carter’s body was mended together by God’s hands.  Does his belly look different than most peoples? Well, yes, it does.  He has a feeding tube and an ostomy and a TON of scars or as I like to call them “superhero marks."  Most people are surprised when I tell them that Carter already knows his stomach is different than his friends. Different from mine and Brandon’s.  He already pulls up his friends’ shirts and looks for their ostomy bags.  He looks at mine and Brandon’s stomachs all of the time, and then he looks at his.  Yes, it is different, but it does not mean there is anything wrong with the way he looks.  It is the way God made him, and we are proud of the way he looks.  He is absolutely beautiful!  Lets face it. Kids can be mean.  I know there will be the day in Middle School or even sooner that someone is ugly to him.  My hope is that he does not let it bother him and that he stands up for himself.  God made Carter the way he is.  My goal is that he will always remember this, and no matter what, he will embrace how he was made.  I hope as a parent I can instill a strong enough influence for him to always be strong in his faith and know that God made him just the way he is.  I feel like God is looking down and watching his plan unfold and Carter is just an instrument.  It is my job to make sure Carter knows he is God’s instrument and to understand that there is purpose for all of his pain.  When the day comes and I am looking God in the face I want him to say good job.  You served me well.

For you created my inmost being; you knit me together in my mother's womb. Psalm 139:13

Carter gave me an early Mother's Day gift on Saturday!  His smile was better than anything money could buy!  He also made me a handprint card and gave me some flowers (which were against PICU rules and we had to get rid of them)

Tomorrow, Brandon and I will be married 8 years!!!  It is hard to believe it that has been that long.  On our 5 year wedding anniversary we went to find out the sex of our sweet baby. Instead, we found out Carter would be born with multiple birth defects.  It is a day and anniversary we will never forget!  To read more about it click here!

Happy Anniversary Brandon!  I love you!! Unfortunately, I have NO Wedding pictures saved on our computer.  So here are a few photos of our last 8 years.

One More Day Closer...

Today has been a pretty good day for Carter.  I don’t want to say it has been great, because I think great will be the day he is able to get his traction and fixators off!  They did a X-Ray this morning that showed calcification of his bones.  This is good news!  It means his pelvic bone is healing and calcifying where it was broken.  The bone will calcify in the areas they cut and broke of Carter’s pelvis making those areas fill in and make his pelvis good and round.  The bone has not completely healed, so he will need to remain in traction and keep his fixators in.  Carter had a plate placed over the area where they put his bladder back into his body.  The plate acts as his symphysis pubis (the muscle that holds our pelvic bone together in the front).  Carter did not have enough of his own skin to cover the plate so they had to use Alloderm.  Alloderm is donor skin that has been thoroughly processed.  His body has still not compeletly accepted the Alloderm, so his incision is not completely healed.  Hopefully, his incision will heal completely in the next few weeks.  We think we finally have him on a good bowel regimen, and we are praying we have found his "happy" place with all of his medication.

Thank goodness this life is not our own.  We pray each day that Carter will not remember anything that is going on.  We do not want him to remember laying flat in the bed, the pain, or the anxiety he feels when multiple people walk in the room.  We trust that God is protecting him and his little mind.  I have never been one to wish time away, but from where I am standing, it is hard not to.  Today is one day closer to being able to hold Carter, and I cannot wait!!!  We are longing for simpler days. We are longing for the day Carter is playing outside with nothing to do.  I am ready to rock him to sleep and wake up to his sweet smile in the morning.  We know those days are coming though.   We are just one day closer.  Thank you all so much for your continued prayers, please keep them coming.  As always… To Him be the Glory!

Carter and his VIP television! :)

His Timing is Perfect...

Whew!  I know most of you thought that no news would be good news.  I honestly wish that was the case.  Right now God has other plans.  Carter has continued to stay extremely agitated.  The poor baby just wants up out of the bed!  Yesterday afternoon they decided to try a drug called Ketamine.  Well, Carter did NOT like Ketamine.  He started hallucinating, got extremely scared and was just not himself.  He did not recognize Brandon or myself unless we talked to him.  He was belligerent, and it was extremely scary for Brandon and I.  He was immediately given increased doses of Ativan and a drug known as Midazolam, to help with the hallucinations and hopefully decrease the effects of the medication.  They have not really helped.  Carter was up every 1-2 hours moving all over the bed last night.  He would go from screaming (not crying) to laughing.  He has so many medications on board that he is not thinking clearly.  We just talked with the PICU Doctor and he said the next step would be to put Carter on the ventilator and completely knock him out.  The main concern we have about this is if they will be able to give Carter enough medication to knock him out.  He is on so much right now that he should be in a coma and he is wide awake kicking and moving all over the bed.  At this point, Brandon and I just want him comfortable and to be able to rest.  Right now he is miserable and agitated.

I would be lying if I said that it is not tough right now.  I am sure some of you can sense my frusturation in my writing right now.  I am reminded that God did not say it was going to be easy, and he never said we would have a fairy-tale type of life here on earth.  The one thing he did say is that this is temporary.  I know that full and well and I am extremely grateful for it!  We are completely broken right now.  Our hearts are torn and our souls are hurt.  We know God's plan is perfect and we are just waiting on his timing.  I took a long shower today and prayed for patience and for God to let me see just a little glimpse of my little boy.  When I walked back into the room Carter was extremely agitated and kicking.  After a lot of medication, he calmed down.  I sat down in my chair beside his bed.  He looked over at me, grabbed my hand and gave me a big, sweet Carter smile.  It brought tears to my eyes and I knew it was God telling me it was going to be ok.  We are faithfully waiting on God, and we know his timing is perfect.  Nothing else matters right now. We just want our little boy back.  We want to make the right decisions in his treatment that will not hinder him with long-term side effects.  Please continue to pray for Carter.  Pray for healing, rest and for him to stay still or asleep.  Pray for the team of Doctors and Brandon and I to make the right steps in his care, for them to not cause him long-term issues, and for him to come out of all of this the happy, healthy baby he entered it.  Thank you all so much for all of your prayers and love for our family.  It is truly keeping us going right now.  As always... To Him be the Glory!!!

LORD my God, I called to you for help, and you healed me. Psalm 30:2

I have to say a HUGE thank you to Patti Bryant, Jennifer Salter and Kimberly Moore.  They put together a huge fundraiser for us.  Even in the pouring rain they surpassed their goal.  I know it took a lot of time and effort and we are extremely grateful.  I also want to say a big thank you to each and everyone of you that ordered a hamburger or helped during the fundraiser!  I know a lot of you took off work and stood in the cold pouring rain to help with the fundraiser. Thank you! Thank you! Thank you!

Fundraiser...

I have struggled with where to start this post for a long time.  We have AWESOME friends and family, and we have continual support all of the time.  I receive messages from friends, family and complete strangers on a daily basis asking how they can help us.  I am always extremely humbled, and I will always ask for prayer.  We are so undeserving of any of the gifts given to our family.  We have recently had several friends do fundraisers for our family.  They have contacted us on multiple occasions to figure out ways to help promote all of the hard work they have done for the fundraisers.  I have been hesitant to ever put it on our blog.  My intention for our blog is to keep everyone updated on Carter’s condition and for other families to learn from our experiences.  I never wanted to put anything on the blog because I honestly did not want people to feel like we were asking them to donate to us or feel obligated to give to our family.  On the other hand I do want to help the people who have worked so hard on a fundraiser for our family.  I know how much time and hard work they have put into these events.  I have decided to publish this post with fundraisers that are going on for our family.  These fundraisers have been started by sweet friends to help with our expenses.  We are extremely grateful and will never be able to tell everyone thank you enough for giving to our family.  We are extremely undeserving!  Please do not feel obligated in any way to participate in any of these.  We only ask for prayer for Carter! 

To give a donation click the paypal logo here

Brandon Elementary School is selling I Pray For Carter T-Shirts.  The deadline to order the shirt is THIS Monday May 6th.  Please click the paypal link here to purchase.  Please verify that your paypal address is the address you want the shirt to ship to.  If you would like to pick up your shirt at Brandon Elementary School in Brandon, Mississippi please choose the appropriate link.  I will update later on pick-up date.  Please disregard instructions on order form, I included it for the image.

Please use the appropriate pay-pal link for purchasing.  If you would like to pick up at BES NO shipping will be charged.  If you would like to have the item shipped, please click the Ship to Me pay pal link! Thank you!!!

I Pray for Carter T-Shirt Pick up at BES

Youth Small $15.00 USD Youth Medium $15.00 USD Youth Large $15.00 USD Youth X-Large $15.00 USD Adult Small $15.00 USD Adult Medium $15.00 USD Adult Large $15.00 USD Adult X-Large $15.00 USD Adult XXLarge $17.00 USD Adult XXXLarge $17.00 USD

IPFC T-Shirt Ship to ME!

Youth Small $15.00 USD Youth Medium $15.00 USD Youth Large $15.00 USD Youth X-Large $15.00 USD Adult Small $15.00 USD Adult Medium $15.00 USD Adult Large $15.00 USD Adult X-Large $15.00 USD Adult XXL $17.00 USD Adult XXXL $17.00 USD

To purchase I Pray For Carter Wristbands click the appropriate link below.  I will post a later date of when wristbands can be pick up at BES.  I will also post a date when they will be shipped. 

I.P.F.C Wristband Pick up at BES

I.P.F.C Wristband Ship to Me!

Cathy with Cathyscreationsjewelry.com has custom made this beautiful necklace for Carter.  The necklaces are $18.00.  The profit on each necklace is $5.00 and all of the profit comes to us.  To purchase the necklace or look at her other beautiful products, click visit Cathyscreationsjewelry.com.