Conner's First Laser

We began the trip to Charleston, SC at 1 am on Wednesday morning. Dad, Billy, Conner and I bundled up and started on our way. I cannot tell you alot about the trip because I was literally asleep before we left our community. LOL I had a long day on Tuesday. I do remember waking up in a panic around 3:30 needing to feed Conner. I had set my alarm on my phone to wake me up at 2:45 so he could eat and still be in the no food 4 hours prior to surgery time frame. Apparently in my sleepy state I shut off the alarm and calmly went back to sleep; Billy and Dad just thought I was crazy for setting the alarm in the middle of the night, had a good laugh, and went back to their conversation. LOL Anyway once we got to Charleston, we went in the hosptial around 6:30. After a few minutes they took Billy, Conner and I back to a triage room to do his vitals. Dad went to the car to get some rest before the return trip.

The nurse took Conner's blood pressure; it was high 137/118.  She went ahead and took us back to the recovery room where we would be waiting during the treatment and checked it again...140/100.  When the anesthesiologist came in to speak with us, he took one look at our chunky boy and said "Yep, your gonna need a bigger cuff!"  LOL Apparently Conner has outgrown the newborn blood pressure cuff, thankfully it wasn't something serious.  During this time Conner was very unhappy with us.  He is used to eating as soon as he wakes up and did not understand why he was being deprived.  Billy and I did a whole lot of praying, rocking, and singing. 

Nurses, physicians and even the chaplain were in and out of our room. Dr. Hochman came in and told us how long the procedure would last and what to expect when Conner came back.  The nurse came and wheeled out the crib and the anesthesiologist took Conner in his arms and carried him to the OR.  This was probably the hardest part for Billy and I, especially considering it was the unknown.  We didn't know what would happen and could only TRUST the Lord to take care and bring our sweet baby boy back to us.  Within 15 minutes Dr. Hochman came back in our room and told us that Conner was doing wonderful and that the procedure went well.  Not long after that Conner was brought back to us and nursed wonderfully right of the bat.  His face looked sunburnt and there was some purple in the hemangioma.  Personally at that point his face could have been lime green polka dotted and I would have just been grateful to have him safely back in our arms. 

We were able to pull out of the hospital parking lot and head home by 8:30.  Such a short procedure, yet so many risks.  The risk of anesthesia and Conner not waking back up, the risk of eye damage, I could go on but let me just say that blessed be the name God handled all of these risks with no help needed.  No one else can be praised except our Lord for hearing and answering all of the many prayers that have went up in the past week.  Thank you Father for protecting our son!!!! 

Conner will be returing to Charleston in 4 weeks for a second procedure identical to this one.  Please keep our family in your prayers as we journey down this road. 

Thank you!

I want to start off by saying we are daily amazed at the blessings the Lord has for us.  God has done so much for us during this time and continues to bless us more than we deserve.  We have had so much help in the past few weeks...I do not want to leave anyone out but let me just list a few of the unexpected blessings we recieved! 
-A close friend of mine is chosing to remember a dear loved one that passed away this summer by sharing Conner's story.  It means the world to us that she is getting our story out and raising funds for this wonderful organization that is helping Conner.  (Sidenote:  Jackie, I miss Tammy so very much and hope that you know how much I loved and respected her!) 
-Several people have walked up to either Billy or I and slipped us some gas money, plus a dear couple drove all the way to our house (which is not close to anything) and brought us a $50 gift card for gas.  Thank you all so much for the help with this much needed expense. 
-My amazing family has been so supportive.  Mom has kept my girls several days and treated them like princesses even though they had a yucky case of strep throat.  Dad volunteered to drive Billy and I to Charleston, so that we could get some much needed sleep along the way.  Sissy (or Jennifer LOL) helped open up a bank account for Conner and agreed to be the trustee and help keep up with any funds coming in for him. 
-Several friends and family members have taken my frantic phone calls to answer questions that pertain to their jobs.  April thanks for the accounting advice!  Angie thank you for answering my dermatology questions.  And everyone else that have listened thank you so much!
-Most of all I appreciate my sweet husband and the loving way he has supported me through all of this.  All of my completely confusing phone calls of "what if this happens or what if that happens?"  have been handled with gentle patience and I could not ask for more. 

I will post about the day of Conner's first surgery soon!  I am stuck at work all night so I am anxiously waiting Christmas morning with babies!  : ) Merry Christmas to you all! 

In true holiday spirit this is Conner's wonderful Thanksgiving bib from sweet Tappanjackie!  : )

Amazed!

So I haven't updated in a bit...let me get you up to speed. We went to see the "specialists" at a huge hospital here in NC. I was not impressed. Let me just say that I am aware they were dealing with life threatening illness all day and that what Conner has seemed a little less important to them. (The hemangiomas are lumped in with the cancer patients at this particular hospital.) However, to US Conner is very important and providing the most consistent and medically necessary treatment is important. Needless to say before we had ever left the building Billy and I were both very sure that Conner would not be continuing treatment at that hospital. At that time I was devastated. I felt as if because we are Conner's parents that no doctor was ever going to seem good enough. Maybe I was just being too picky. So, I called some reinforcements who helped reassure me that no I was not being to picky, it was simply protecting the precious gift that God has placed in our hands. With a ton of help from the family advocate at the Vascular Birthmark Foundation, (special thanks to you Ms. Corinne!), we were able to secure an appointment with Dr. Marcelo Hochman in Charleston, SC. I am not sure how we overlooked this great doctor in our search for treatment, but somehow I missed him. I am so grateful to VBF and Corinne for helping us locate this doctor and simply holding our hands throughout this tough time.


On Friday Mom, Dad, Conner and I loaded up at 6am and began the 4 1/2 hour drive to Charleston. We were trying to get to Charleston, see the doctor, and get back home before I had to work on Friday night! We drove straight through and arrived just after 11am. Conner slept almost the whole way, YAY little man! Mom, Conner and I were immediately called back into a patient room and within minutes Dr. Hochman himself came in. He spoke with us about Conner's hemangioma. He did not feel that steroids or proplanalol would be the best course of treatment in this case simply because Conner's hemangioma is no longer rapidly growing. He did not feel like we should just wait and see. He did not want to use a laser that would scar Conner. He did want to start immediate laser therapy on Conner. This will help stop anymore growth and help begin the involution process. Then came the big insurance discussion. Conner's insurance is not accepted at this office and the cost of treatment is MUCH more than Billy and I can afford. Without a moments hesitation Dr. Hochman agreed to volunteer his time and services to work on Conner. Hallelujah! I cannot begin to describe how shocked we felt that God really had created a way for Conner to get the right treatment. It is so amazing to see right in front of you God's hand working in your life. I don't think either Mom or I had words for the doctors. Just a simple thank you, all other words were lost in the sheer joy of knowing everything was being taken care of! Thank you Lord!  Conner will have his first treatment next week on Wednesday!

The only thing Dr. Hochman is asking of our family is this: We need to do LOTS of fundraising. Although he is volunteering his time, the hospital will bill Dr. Hochman’s Hemangioma Foundation for each laser treatment. It will cost approximately $5000 a treatment and Conner needs up to 5 treatments. Quick Math: That's $25,000. At the conclusion of the laser treatments we will reevaluate and see if Conner needs plastic surgery, and that would be another amount of money. I will begin on Monday trying to find ways to raise these funds. I can't imagine why we are so blessed to have found treatment and with a foundation that has been so quick to come to our aid. If you have any ideas about ways to fundraise Billy and I are very open to suggestion.

Just a side note, Conner got to see his first snow!  And boy was it a big one.  We never made it back in time for me to work, we got about 40 miles from home and had to stay in a hotel due to icy conditions!  Thankfully God kept us safe and we returned home to a beautiful yard full of snow, two energetic sisters, and one very sleepy daddy!  As always please continue to pray for our family! Oh yes and Conner would like to wish his Mamaw a very Happy 50th Birthday! We love you Mamaw Judy!

The Charlotte Appointment...

Hello all!  Did you know it is less than two weeks until Christmas?  I am so excited and trying to stay in the Christmas spirit in the midst of all the doctor drama!  I just wanted to update on what happened in Charlotte. 

Dr. Antonacci at CMC is wonderful!  With that being said, I am sorry to report that Conner will not be seeing him for treatment.  They do not have the resources to follow Conner as he starts steroids &/or proplanalol.  Plus Conner needs to regularly see an opthamologist, plastic surgeons, hematologists.  A whole team of people and Dr. Antonacci is only one person...LOL.  He recommended that Conner go as soon as possible to see Dr. Milton Waner at the Vascular Birthmark Institute in NYC.  However at this time Conner's insurance will not cover that visit.  As a second option he wanted us to go to Duke University Medical Center.  That is where we will be heading tomorrow.  We have an idea of the course of treatment.  Possible steroids, possible laser therapy, possible topical ointment.  Hopefully no invasive surgery at this time.  Dr. Antonacci also threw out there that if the steroid treatment did not work it was a possiblity that Conner would have to undergo chemotherapy.  Not because the tumor is cancerous but because it would help to kill the blood cells.  I pray that this does not happen, but I know that God knows exactly what Conner needs. 

I cannot say how much everyones love and support has meant to me.  It is a daily encouragment to just hear the words "we're praying for you!"  God has richly blessed our family with a network of other belivers that have touched our hearts in so many ways!  : ) More updates after the Duke appointment tomorrow and maybe I can get an updated picture on here.  Conner is growing to be such a little chunk.  You can't help but just want to cuddle and squeeze him!  : )

Changes, Changes

I am in a much better frame of mind today.  So maybe I can get through all the information that we have recieved this week.  Before I ever went to preop I was in contact with the Vascular Birthmark Foundation.  These people deal with hemangiomas and other vascular birthmarks every day.  I wanted to know the standard course of treatment for what Conner has.  One thing that was very important when it comes to Conner's treatment is that the laser used must have a cooling agent on it.  This will help minimize his scarring.  With that being said, Mom and I went to the preop appointment armed with lots of questions.  The doctor that came in was NOT the original doctor that we had seen or the doctor that would be preforming the surgery.  Come to find out this was a urologist that just happened to be "helping out" in the plastics department....!?!? Needless to say we were confused, especially when he could not answer any of our questions, specifically the ones about the laser.  He decided it would be best to go ahead and ask the regular doctor to come speak with us (you think?).  She rushed in and was apparently not impressed with being taken away from whatever else she was doing.  When I asked her about the cooling agent on the laser, she told me that there was not one.  But did not elaborate.  The visit was rushed and there were several other things that she said that were contradictions to our previous visit.  She told us that she wanted to do just this one treatment and then wait until Conner stopped growing and then do a "cosmetic clean-up".  We were very disappointed in the quality of information we were given.  I am a sucker for internet research and the things I had learned about hemangioma treatment compared to what this doctor was planning on doing to Conner just did not add up.  So for now we are "postponing"  the surgery.  We will be seeing a new doctor in Charlotte tomorrow at 1 pm.  When I called their office yesterday for a second opinion they immediately wanted to work us in and cautioned us not to go through with the surgery on Friday until we had recieved a second opinion.  I am feeling very confident that God is leading our steps in the right direction.  I am so thankful for all of the prayers and words of support.  The Lord knows how much our family needs words of encouragment right now and always sends the right person with the right words at the right time.  Amazing how that works huh? I'll keep you all updated!!!

Confused

Yesterday we went to Winston Salem for preop and a health assesment.  I was confused by the change in attitude from the doctor and the new information that we were given.  I hope to be able to post a more informative post soon, but for now let me just say this.  Please pray for God to guide us in this desicion making process.  It is terrifying to think that someone might just be experimenting with our son.  Please pray that God's hand will guide us to the correct doctors that can best help Conner.  I am not so naive to think that Conner's face is going to come out of this completely "perfect". Man's idea of perfect and God's idea might not line up.   But I am so trusting in our Lord to KNOW that He can lead us to the right place, right doctors, right time and give Conner the RIGHT outcome.  Thank you so much for your prayers.  Much love to you all. 

The Beginning....

Conner was born September 21, 2009.  He is our third child, but our very first baby boy!  Shortly after birth I noticed what appeared to be a small patch of broken blood vessels on Conner's right cheek.  We were assured that it was simply a bruise from a forceful labor. On September 22 Conner was transferred to a larger hospital's NICU.  He was diagnosed with pneumonia and immature lungs.  He was put on a C-Pap and lots of monitors plus and IV.  The neonatologist treating him told us that Conner had a Port Wine Stain (PWS) and that it would go away by the time he was 7.  After a week in NICU, we were finally able to go home!  When we went for his first check up with our family pediatrician we found out that a PWS does not just go away on its own and that it could be associated with certain types of brain damage.  So off for a CT scan we went.  Thankfully after a week of prayers, tears, and lots of nervous waiting, the phone call finally came:  Conner's CT was normal!!! Also during this time Conner got what we were told was a bacterial infection on his PWS.  It was being treated with antibiotics but continued to spread.   The ped wanted to send us to a plastic surgeon asap.  So on November 17, 2009 we had our first trip to Winston Salem and met Dr. David.  Dr. D told us several things:
#1 Conner does not have a PWS. 
#2  Conner did not have a bacterial infection.
#3 Conner has a hemangioma (H).  A hemangioma is a rapidly growing benign tumor made up of blood vessels.  
#4 Conner's tumor was growing at a rate which was making the skin ulcerate or "break down."  It would need to be treated ASAP with laser surgery to help with healing the ulcerations and hopefully slow down the growth of the H. 
#5 Because Conner's H is so close to his eyes, he is at risk to develop amplyobia and loss of eyesight in his right eye. 

We know that God is in control of all things, and although the road ahead of our little one looks dark there is no doubt that it is HIS hand that is leading us down this path.  He has always and will always protect our family.  There are several ways you can help us pray.  Please pray specifically that: 
A.  Conner will be convicted and come to trust in Jesus at a young age. 
B. God will use Conner's journey to bring others to HIM! 
C. Conner will always wake up after his surgery.  General anesthesia is a scary thing for mommy and daddy to understand! 
D. The doctors will guide us in making the right desicions for Conner regarding his medical care.  
E. Conner's ulcerations will heal and there will be no infection.  The rate at which an infection would spread through his little body is alarming at best. 
F.  No matter the outcome, that our family and Conner will continue to know that God has and will continue to keep us SAFE THUS FAR!