Welcome Nami Pierce on March 19, 2013

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Nami Pierce was born on March 19, 2013 at 12:38pm.  He was delivered at Baylor Medical Center at McKinney via C-Section.  His doctors were Dr. Bruce Rajala and Dr. Ralph Joseph. 

I can't really explain how I felt when he was about to be delivered.  I had so many emotions and thoughts swirling around in my head.  I couldn't stop crying from the moment they put the drape up before surgery.  I was worried for Nami and could not stop thinking about something going wrong.  The moment I heard his little voice crying, my heart just leaped for joy!  I was anticipating his cry to sound a little different due to his lack of palates, but surprisingly he sounded just like his older brother Brycen when he was born.  Then when they finally placed him by my face, I couldn't believe how beautiful he was/is.  I am absolutely in love with this boy! 

Thanks to everyone for your loving words and support!  We are truly blessed to have such a wonderful group of friends and family!  Love you guys! 

  

Sono Pic's of Baby Pierce

People have asked me how I did not know on my 1st ultrasound at 12 weeks.  As you can see in the 1st sono picture, you really can't see anything that would indicate a cleft lip.  As you look at the 33 week 3D Picture, you can see the dark lines where his cleft is.  I have also posted a pic of my son who does not have a cleft in comparison with baby pierce so people can see the difference in the sono pics which would indicate a cleft lip.  Here are some of our sono pics of precious Baby Pierce....

Baby Pierce at 12 Weeks

Baby Pierce at 33 Weeks!

on left - Big brother Brycen at 34 weeks with no cleft

on right - Baby Pierce at 34 weeks with bilateral cleft

Seven More Days to go...

     It's hard to believe that we will be a family of 6 exactly one week from now.  It is truly amazing how one moment can change your life forever.  We are so excited to meet our newest addition.  I have been following many blogs from families who have a child born with a cleft.  It may seem odd to hear this, but I have actually fallen in love with the cleft face and smile.  I look at these tiny babies with these lion like lips, and my heart just melts.  I've come from the point of feeling sorry for these babies to the point of feeling nothing but adoration!  I especially love the bilateral cleft lip, probably because that is what our little one has.  Regardless, I already know that I will be deeply saddened yet relieved once his cleft lip is repaired.  Saddened because the face I have known since his 33 week ultrasound has been drastically changed.  Relieved because I know that the 1st surgery is over, and he is one step closer in being socially accepted as "normal" looking, improving his speech, and helping his feeding.
     When I first started reading these stories from mother's who kept stating that their child has a defect and will hopefully become normal after the surgeries, I couldn't believe what I was reading.  How could these loving mother's consider their child abnormal?  It was my belief (and still is) that a human being, regardless of what is considered socially acceptable, is a living person who wants to be loved and accepted.  How can a newborn and living child be considered abnormal?  For his physical appearance alone?  My child is not abnormal, and he does not have a defect.  He was meant to be born this way....  Or was he?  As I kept reading story after story, it finally dawned on me.  My child will have a physical birth defect. This physical birth defect, which Merriam-Webster defines as an imperfection that impairs utility, must be repaired in order to live a full and happy life.  He will need lip repair for feeding and psychosocial purposes, palate repairs for feeding, hearing, and speech improvement, bone grafting into his gum-line for orthodontics, and ear tubes to prevent infection and hearing loss.  My baby boy may not be perfect physically when he is born, but he will be perfect in every sense to me.  I love the fact that he will be born with a cleft for many reasons.
1.  Cleft lips are so darn cute!
2.  He is teaching me life skills that I would have never learned if not for his cleft.
3.  Our kids will learn so much about being compassionate and not judging people based on looks alone.  I don't know if there is a better way to truly instill these valuable qualities in any person.
4.  We can help others who might go through these same things.
5.  One thing I know in life...  If you want to feel sorry for yourself, you will focus on what you don't have.  If you want to feel happy, you will focus on what you do have.  And I have a healthy, active, living being that will be born very soon.  He will want love, affection, and care, and I am capable of providing these things for him... and I am so honored to be that person for him.
     Despite all of these positive outlooks, I am worried for my son.  I worry that he won't be able to gain weight before his surgery. I worry that he will be afraid going into surgery.  I worry that something may go wrong during surgery.  I worry that he will be in pain after surgery.  I worry that something bad will happen during the recovery period.  I worry that he will lose his hearing.  I worry about his speech.  I worry about his 2nd surgery.  I worry about his capability to eat solids.  I worry about him feeling abnormal or different.  I worry about how mean people can be.  I worry that if I worry so much it will affect all of my children.  I worry.
     For now, I will tuck my worries away and focus on the present.  It is Tuesday, March 12th, and Spring Break is here.  Brock and I will take the kids out for some much needed fun.  We will be celebrating the life of an amazing woman, Brock's mom.  She is truly a remarkable person, mother, and grandmother.  Happy Birthday (March 11th) Fran Stiffel!  We love you!!  

2 Weeks to go... Anxiously waiting!

Hello again!  I am 37 weeks 4 days today, and the wave of emotions is slowly settling.   Unexpectedly, I was completely overwhelmed with all of the information that came flooding towards me.  Although I appreciated all of the information, it was a bit confusing and mostly clashed with other thoughts and conversations I had regarding all of this.  When trying to find some sort of guide on the types of procedures to repair a bilateral complete cleft lip and palate, I was forced to put my faith with each surgeon's word.  Unfortunately for me (being in the sales industry far too long), I felt like each surgeon was basically saying "my way is the best way" without presenting any controlled data.  There was no consensus on the "best" technique to use.  After my first 3 appointments with different craniofacial surgeons I was upset, stressed out, and extremely overwhelmed with the thought of having to make this type of decision.  To sort out all of the emotional chaos, I needed to organize my thoughts by doing my own personal research and creating a comparison chart which helped make sense to me.  Tonight I feel nothing but pure joy and excitement on the arrival of our baby boy.  If you would like to get a better understanding of this, I have decided to write candidly about my experience in hopes that someone else who may go through this can get some insight into the many layers of this enigma.     

     Over the past few weeks Brock and I have spoken with 5 craniofacial surgeons, 3 speech therapists, 2 lactation consultants, and a craniofacial orthodontist.  What we have learned is every surgeon has his own philosophy of what he feels is the "best" technique to use.  I was hopeful that we would come across a surgeon that would offer options and let us decide which technique we feel most comfortable with, but unfortunately it's a package deal.  What I mean by that is each surgeon typically has one technique they use in every cleft case.  They might modify their technique in terms of stages and time lapses between repairs, but there really isn't an option to switch techniques without switching surgeons.  There is no "have it your way" approach.  We just have to listen to each surgeons' theories and decide which one we feel most comfortable with.  BUT, it's much more complicated than that.  First, each surgeon has his own statistics and data to prove his points and explain why there may be more risk associated with speech impairment or future jaw surgeries using one procedure over another.  Secondly, since we will be working with this doctor throughout our child's adolescent life and part of his adult life, we need to be able to communicate with our doctor and feel comfortable with him and his team.  Thirdly, and most importantly, this is a major decision that has to be made for our child (who doesn't even get an opinion on this matter).  We, as parents, have to make this decision based on what we think is in the best interest of our son without even knowing what he really wants.  And on top of that, Brock and I have to AGREE on what we feel is the "best" technique to use, the "right" surgeon, and what is in our son's best interest.  Anyone that knows Brock and me can understand how difficult this is for us.  We are both strong minded, opinionated, persistent, passionate, and not easily persuaded.  If we don't agree on this decision there could be resentment, guilt, anger, or bitterness between us if things don't work out the way we anticipated.  So in my mind, this was our biggest concern.  We needed to figure out who we wanted to work with, as well as support each other throughout this journey.  After all of the research we have done and all of the meetings we have had, we finally made a cohesive decision.  We have chosen Dr. Richard Ha at Medical City Dallas.  We felt that his technique of repairing the soft palate at 3 months during the same time of the lip repair made the most sense to help reduce the risk of speech impairment.  We also felt that waiting 18 months to repair the hard palate helps reduce the risk of future jaw surgeries.  If you would like to see a comparison chart of the different techniques that were suggested, please scroll down towards the bottom of this post.  

     Making this decision was one of the most difficult things I have ever done.  I am so grateful to have Brock as my partner through all of this, not only because he is a physician and could simplify very technical medical terms in ways in which I could easily understand but also because he is very patient and gives me so much loving support.  He is an amazing person, and I love him more now than ever.  

Our son is such a special gift to us for so many reasons.  We cannot wait to hold him, nurture him, and show him all of the love that has made our hearts completely swell for him.  Two weeks to go, and we are more than ready.  We love you lil' man! ~ Mommy and Daddy 

 **  All of these surgeons agree on the timing of hip bone graft surgery between the ages of 6-9yrs depending on orthodontics.  This surgery will close the gum line and help guide the canines into it's proper position.  They also agree that if needed, future jaw surgeries and rhinoplasty surgeries should wait until they have reached their adult face (usually around 18 years of age).  Although, due to psycho-social risks you may get these surgeries done earlier but you may risk further and more difficult surgeries in the future.

Surgeon	NAM                     (To help form the nostrils and retract the hard palate)	Tubes in Ears (To help reduce the risk of hearing loss)	Lip Repair               (To help with feeding and physical appearance)	Soft Palate Repair (To help with Speech and feeding)	Hard Palate Repair (To help with speech and feeding)	Philosophy
Dr. Richard Ha -  Medical City Dallas	1st week of life	3-6 Months          at time of lip and soft palate repair	3-6 Months with Soft Palate Repair	3-6 Months               with Lip Repair	18 Months	He believes the sooner you can fix the soft palate reduces the risk of speech impairment.  He believes that by fixing the soft palate at an early stage will help bring in the gaps of the hard palate significantly which will help with an easier repair of the hard palate.  The longer you wait to repair the hard palate reduces the risk of jaw reconstructive surgery in the future.  He claims to have a low VPI rate of ~5.5% as well as a low fistula rate.  He believes that by placing the tubes in his ears early and continuously replacing the tubes will help avoid ear infections and hearing loss.  He believes that NAM's are important to use in order to help with the cartilage formation of the nose.  He believes that the children need to use Nono's to avoid damaging any repairs.
Dr. Jeffrey Fearon -       Medical City Dallas	NONE	Need basis only	4-7 Months	9-12 Months         with hard palate repair	9-12 Months         with soft palate repair	He believes that anesthesia for a newborn in the first 3 months of life can cause issues with brain development.  He prefers to start his first surgery at 4 months to reduce this risk.  He also believes the sooner you   can fix both - the hard palate and soft palate reduces the risk of speech impairment.  When we questioned him on waiting to repair the hard palate at 18 months he felt that waiting that long has a higher risk of causing speech development issues.  He offers an impressive no suture stitching marks for the lip surgery due to an anterior suturing method he developed.  He does not use NAMS claiming that they are harmful by causing erosion and scar tissue in the nostrils.  He also does not believe in using Nono's as he thinks that it tortures the child and is unnecessary.  He stated that if the repair hurts, the child will not want to touch or bother it further. He claims to have a very low fistula and VPI rate.
Dr. Carlos Barcelo -    Forest Park Medical Center Dallas	1st week of life	Need basis only	3-6 Months	9-12 Months         with hard palate repair	9-12 Months         with soft palate repair	Very similar to Dr. Fearon's philosophy in regards to the timing of surgeries except he is not as concerned about the anesthesia brain development risk at 3 months.  He does use a NAM and feels that it is necessary and you can avoid erosion and scar tissue by adjusting the NAM correctly on a regular basis.  He also uses Nono's in order to keep the repairs from being accidentally damaged.
Dr. Alex Kane - Children's Medical Center of Dallas	1st week of life	3-6 Months            at time of lip repair	3-6 Months          for a bi-lateral complete cleft lip he may do a two stage repair.  He would repair one side in 3 months, then wait 6 months to repair the other side.	9-12 Months         with hard palate repair unless it is a two-stage.  Then he will repair at 12 months minimum.	9-12 Months         with soft palate repair unless it is a two-stage.  Then he will repair at 12 months minimum.	His philosophy was very similar to Dr. Barcello's although he uses ear tubes in the first surgery of lip repair in order to avoid potential ear infections or hearing loss.  He also believes that depending on how much skin is needed to repair the lip determines whether or not he does a two stage lip repair or one stage.
Dr. William Magee Jr - Operation Smile Norfolk, VA	NONE	Need basis only	1st few weeks of life	1 Week-3 Months	1 Week-3 Months	He believes the sooner you can fix everything, the better outcome you will receive by allowing the muscles to work correctly early on.  He did state that he has a high anterior fistula risk rate but feels his method is best for the emotional and psycho-social aspect.  Other surgeons feel that this is too risky, the muscles are too small to be accurate, and the end result will be more surgeries and the need for cosmetic repair.

This analysis was done based on our interpretation of the conversations we had with each surgeon.