We Have A Date

The very much anticipated date has been set.  It has became very real to us that Presley is going to have her surgery.  She will have her sagittal craniosynostosis surgery on Tuesday, February 5th.  We have 29 days to fully prepare ourselves emotionally and love on her every second.  We then will sit through what will probably be the longest 3 hours of our lives.  On the afternoon of February 5th we look forward to sitting with our sweet baby, comforting her, and hoping that this will all be behind us.

Many friends have asked how they can pray for us.  We now hope that she can stay well (no more colds, congestion, etc) so anesthesia will clear her for safe surgery and we will not have to deal with a reschedule.  So pray for wellness for the next couple of weeks!! 

The Verdict

Today we met with Dr. Honnebier, Presley's plastic surgeon.  I am in awe at the intelligence she admits when in her presence.  Her ease and knowledge about PA's condition was very calming.  Although the  surgery is elective, Dr. Honnebier's attitude showed us immediately that it is the best thing to do for Presley's future.  We contemplated risks during surgery, her cosmetic appearance without surgery, recovery with surgery, and potential brain damage without surgery.  We are going to have the surgery to reconstruct her prematurely closed suture.

Once again, a medical professional used the term "soon" without further explanation.  The way her surgery date is set is through scheduling with the plastic surgeon, neurosurgeon, anesthesia, etc, etc, which I am positive is a daunting task.  I didn't let the term "soon" go by as easily this time.  When asking what "soon" was, I assumed it would be in the next couple of months.  I was a little stunned when she said in the next three weeks.  One problem stands in the way of that date though.  On New Year's Eve I took Presley to the pediatrician for some congestion and left with an inhaler for RSV.  The clinic said it is spreading like wildfire this season.  We are on the downhill spiral of her virus and she shouldn't be contagious any longer.  To make sure Presley (and all her little daycare pals) stay healthy we are keeping her away until Monday.  Anesthesia will not compromise (thank God) her airway during a four hour surgery and she will need to be completely cleared of all respiratory issues by surgery time.  If she isn't cleared by the set date, we will have to reschedule.  ACH will be contacting me within a few days for a date. 

Just a little information about the procedure and recovery.  

-Duration of surgery is about 3-4 hours

-She will have a breathing tube

-The chances of her having a blood transfusion are very likely.  We chose to use the blood bank because it is "researched" the safest.  We will donate blood to the red cross in her honor for future recipients.

-Her scar will be about 2 inches on the crown of her head.  Endoscopic surgery is an option, but for her type of craniosynostosis the scarring would be the same as the regular surgery and the regular surgery gives the surgeons a direct view of their work.

-She will stay in ICU for the first night for monitoring

-The second night she will stay and her drainage tube will be removed

-When she comes home they claim she will be the same baby as we took in (believe me I was drilling them on set-backs, delays, any form of disruption in her development)

-A week after surgery she will have to wear a helmet for up to 90 days.  I have already got the velcro ready for bows!  The helmet is not for safety, but for moulding purposes.

-Two to three weeks post surgery she can return to daycare

-She will have yearly checkups until she is five years old, then they will discharge her visits if all goes perfectly

The OCD over prepared person I am, came in with a two page typed list of questions that she answered  without hesitation on any.  Although this is Dr. Honnebier's life, and she sees these cases (and worse) daily she didn't once downplay Presley's condition or surgery.  She was direct and told us what we needed to know.  

Obviously with any surgery there could be complications, and I am well aware of what the worst can be.  Blood loss was the highest priority that she wanted to inform us of.  After surgery, it is possible that her bones could not grow back together leaving her with the opposite problem, and having an open soft spot.  Another surgery could be done, or she could just have to be cautious, such as no contact sports.  We will pray that is not another issue we have to overcome.

Both my mom and my best friend mentioned today that I was calm when giving them these facts.  I was explaining to my friend Brock that it is almost surreal.  I have cried so much at the beginning, praised so much when we found out it wasn't brain damage, that now I am just blank.  During our consultation today I felt like I was doing an interview on a case for someone else's child.  I know that sounds outlandish but I was so focused on getting all the information I could I forgot for a second what was going to happen to my baby girl.  I do not want them to cut into her head.  I do not want her to have to have a blood transfusion. I do not want her to have a scar.  I do not want them to shave her hair that we have worked so hard on.  I do not want her to be swollen after surgery.  I do not want her to have serious anesthesia.  I do not want to hear the risks after surgery.  And, I do not want her to wear a helmet.  This procedure, as we have decided, must be done, whether I want it or not.  That day will be here "sooner" rather than later, and we will handle it the best we can.

Thanks for all the texts, calls, cards, messages, prayers, and love.  It means the world to us that people are supporting PA.

Hopes for 2013

Andrew and I can both agree that 2012 was a tremendous year of emotions for our little family.  May 8th, 2012 was the best day of our lives.  Presley joined us and has not stopped bringing smiles to our days since.  She has given us so much joy that it would be impossible to express adequately.  December 13th, 2012 was the worst day of our lives when we realized the road ahead dealing with her craniosynostosis.  

2013 is starting off with our meeting with the craniofacial team and plastic surgeon tomorrow.  From there we will determine what is best for Presley.  We will enter with an open mind and choose selflessly on what is most beneficial for her, not only now, but 30 years from now.  

Tomorrow is also mine and Andrew's 3rd anniversary.  A cold Saturday three years ago we promised for "better or for worse". Tomorrow we hope we get a better rather than a worse. We will keep everyone updated!