Nami's Recovery

It is 1am on July 24th, and I finally have a moment to update my blog.

Things have been crazy in the Pierce household. We had to move on July 3rd, and Nami's surgery was on July 10th. So between unpacking, organizing, and trying to get the kids' rooms ready, life has been on the hectic side in preparation for the surgery. It was probably a good thing though, because it kept me from thinking about the surgery until the day finally arrived. And boy did it come fast. I was a bit of an emotional wreck the night prior to surgery. Fran kept the kids for us that night because we had to take Nami to the hospital by 6am. I cried a lot that night. It was such a scary thought to imagine my son going under and being in surgery. But that morning when they finally took him back, I was surprisingly calm. I had anticipated him being hooked up to machines and everything while they wheeled him back to the operating room, but the nurse just held him in her arms as they wheeled the bed beside them to the operating room. There were no tears... at least not from Nami. Afterwards, it was pretty impressive how informed they kept us. The nurse called us 30 minutes after they started surgery to inform us that everything was going great. Then the ENT doctor came to meet us and explained that he finished his procedure and everything went well. Another thing I liked about the wait was the monitor they had in the waiting room which showed you what they were doing. If they were in surgery, they would have a knife by his name, and when he was done with surgery there would be a band aid beside it. I kept looking for the band aid after the last call from the nurse letting us know that the doctor had finished his soft palate and was starting on his lip. Soon after, the band aid popped up beside his name. Then Dr. Ha came to inform us that everything went well and Brock and I were now allowed to see him in the recovery room. Fran, Uncle Barry, and Larry were wtih us in the waiting room, but unfortunately they would not allow anyone to the recovery room but the parents. At first sight, I was taken back. He was still my Nami, but it was hard to recognize him.  Maybe it was because he was swollen from all of the saline, but he just didn't look like my Nami. I was nervous to hold him, because I was afraid I would hurt him somehow. But he had plenty of pain meds and slept the whole day mostly. At first I was worried that he was sleeping too much, but once I saw him open up those big brown eyes, I recognized him! I saw my Nami and fell in love all over again. He did so well while at the hospital. We stayed on top of his meds. I made sure that each nurse he had was aware of his pain med schedule, and they did a good job keeping up with it. We went home the next day and everything started to work itself out. We knew that the first week would be hard. We knew that Nami would have a really hard time with the syringe and the no-no's. Surprisingly, he slept with the no-no's okay. Not good, but okay, which is much better than I expected. The feedings were the worst though. He would toss and turn and flail his head around. I felt like we were drowning him, but he had to eat. We tried different tricks like putting him in front of the TV and having him focus on something else as we fed him. We also tried various ways in placing the catheter in his mouth so that it would not feel like he was drowning. Sometimes our tricks would work, and we would be so thankful. But most of the time it was dreadful and frustrating for all of us. Nami couldn't sleep more than 4 hours at a time because of his no-no's (prior to his surgery he would sleep 10 hours straight starting when he was only 2 months old). He is a tummy sleeper and that couldn't happen until after his stitches were taken out. So on July 16th, I got the best birthday present. My baby boy finally got his stitches out and we let him sleep on his belly. He did so much better. He still couldn't be fed through a bottle until the 20th. And when that day came, he gladly accepted the bottle. He has been doing so well. We are so proud of that little guy. He looks amazing, and he is finally sleeping 8-10 hours through the night again (wish I could say the same for myself). I just want to thank you all again for the kind words, love, and support you have shown us.

Special thanks to the ladies at Brock's office - Sandy, Cindy, Joy, Olivia, and Lisa for the delicious food you prepared for us. Also to Fran, Lisa, Kira, and Amber for helping out with Brycen whenever I needed to take Nami to his doctor appointments. And finally thanks to my helpers at the house - Blaire, Caden, Mara, and Brock. You all have been so patient with me and willing to help out with the kids whenever I ask. Thank you so much. I love you all so very much!
P.S. Fran, thanks again for doing our laundry :)

Looking forward Nami will need to go back to the doctor on August 2nd to get the stent out of his nose. And then some time between 18-20 months, Nami will have his hard palate surgery. As long as everything heals correctly, the only other surgeries he will need is the hip bone graft surgery for his gum line at 6 years, and then his rhinoplasty once he is 16 years. I'm hopeful.

Here is a slide show of what we have been doing throughout this time. Some of this is for my cleft mommy friends (Apryl and Natasha), but it is also for my own keep sake. I hope you enjoy!

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Nami's First Surgery - July 10, 2013

Nami is having his first surgery on July 10th.  We have to arrive at Medical City Children's Hospital by 6 am.  We will then meet with the surgeons and sign consent forms.  He will then be prepped for surgery and will be given a gas mask for anesthesia and then start an IV to keep him under throughout surgery.  They will also have tubes down his throat to keep his airways open.  The surgery will start at 7:30 am and will last for approximately two and a half hours.  Brock and I will be in the waiting room until Nami is out of surgery.  After surgery, they will bring him to the recovery room where Brock and I can be with him.  We are allowed to have two other guests in the recovery room with us, excluding siblings.  Everyone else will have to be in the waiting room.  If he recovers quickly then they will move him to his room where guests can visit him.  The nurse told me that the earliest they will send him to his room would be an hour after surgery, (so around 11 am).  After he is in his room, Brock and I will be staying with him overnight.  Nami will have to wear "no no" arm restraints to keep him from putting his hands in his mouth and possibly tearing his sutures.  He will also need to be fed by syringe instead of a bottle.  Our baby boy will have a really rough few nights with all of the changes, but we know that it will only be for a short time.  And before we know it, our sweet baby boy will be smiling again with a different, but still beautiful smile that will make us fall in love all over again.

Pictures of Nami soon to come....






                                                       Example of No No Arm Restraints

What's all of this "NAM-sense" about??

It is April 2, 2013. Nami is 2 weeks old, and his big brother is 15 Months!  It is so hard to believe how fast these babies grow up.  As much as I miss spending time with my baby as he transitions into a toddler, I must say that I am very thankful he can walk and play happily by himself.  It's interesting how you can take certain things for granted, as I am sure I am possibly doing the same thing as I write out all of my emotions good and bad.  Nevertheless, I remember going to my sister's house in November to help her with her newborn, Grace, and thinking, "I got this!  I can handle a newborn with Brycen easy."  And now that my newborn is here, I am eating those exact words.
  It is  difficult in and of itself to care for a teething 15 month old and a "night owl" newborn at the same time.  Now throw in changing a NAM twice a day, changing the tape of the NAM 4 times a day, going to weekly doctor's appointments, and needing to pump because you can't breast feed.  Not to mention taking our older children to their activities on a weekly basis and coaching a volleyball team.  Routine and schedule has never been so important, yet I can't seem to find the time to check if I am even on schedule with anything.  I barely have a moment to write this post, but I feel obliged to make sure I write out all of these raw emotions so that any other mother who might be planning to go through a similar experience may be more prepared than I was.  I'm not going to lie, these days are tough.  I can feel tears swelling up, but I don't have the time to let them flow out.  Don't get me wrong, I have my moments of serenity and pure happiness, but lately these sleepless days have been building up a huge wave of guilty and anxious emotions.  I sometimes feel guilty about my time management with all of the kids including Nami, and also for "dumping" the kids off on other people while I am taking Nami to his appointments.  I have always been an independent person and have struggled with allowing people to "lend a hand."  Although I have always appreciated the intent for help, today I have learned to accept and ask for help.  With that said, we feel very blessed to have such wonderful physicians to work with and a great support system of family and friends.  Fran, a.k.a. Grandma, has been a tremendous help for us.  She went through surgery earlier this year, scheduling it out to ensure that she could be available to help out with the kids.  I can't thank her enough for being such a strong woman for us and constantly thinking of us whether it is to cook a meal, checking on us to see if we need anything, or just being available for a hug when needed.  I love that woman!  I would also like to thank our neighbor Carrie, for helping us out with our children in school.  She has been such a big help with bringing the kids home from school or picking them up for school.  Some other special people who have helped out are Aunt Jacque, Marni and Scott, Lisa, Amber, Kira, Joy, and Sandy.  We are just so blessed, and I can't thank everyone enough... which reminds me that I need to work on my thank you notes.
     Today it is April 16th, and things have been better.  The first couple of weeks after the NAM were torturous for me because I felt Nami's pain as we had to take the tape on and off his lips again while he was screaming.  Then he had his circumcision and for those of you who don't know, I am not a fan of bleeding body parts.  His circumcision went well and his penis looks great now that it is healed.  The tape is still bothersome, but Brock and I have figured out little tricks to minimize the pain for Nami.  He still gets upset when we take his NAM in and out, but he has become more patient with us as we try to fit it back in his mouth each time.  Even though this process is tedious and seems painful, we have noticed a huge difference with his physical appearance and his feedings have become much easier.  He is gaining weight, his nostrils are forming nicely, and his lips are stretching out to help with the ease of his first surgery.  We are very optimistic with these procedures even though it is tough to actually go through with them.
In other news -
Caden and Mara are doing great.  They both have been adjusting well with the new baby, helping out whenever they are asked.  I asked Caden how he was handling everything and he stated, "I am okay because you guys have a plan and plus Nami is just so cute and adorable."  Gotta love that kid!  Mara has been a bit more emotional about everything.  She has some anxiety about Nami's upcoming surgery, but overall seems to be handling everything appropriately.  Caden is excited that this month is his last month of Hebrew school, which means he can finally have friends over on Tuesdays.  He is playing spring baseball and loves to see all of his friends from Bowie Elementary.  Mara has been keeping me busy with volleyball.   She really loves to play and I enjoy being her coach.  It gives me something else to focus on for a while.  Their grades are outstanding, and they both seem to be very happy... So I guess we are doing something right.  ;)

Brycen is 15 months, and I absolutely love this age!  He loves to go on walks and pick flowers, especially dandelions.  He talks a lot, but we can only make out a few words.  Some of the words he can say are - Daddy, Caden, Mara, Mama, ball, gone gone, thank you, good job, hello, here you go, and bye bye.  He likes to pretend to be in conversations and will pick up almost anything to put to his ear like he is on the phone.  He brushes his hair and teeth in the mornings using my hairbrush and Brock's toothbrush.  Also, while watching dancing with the stars the other night, he put his hand on his head like a ballerina and went in circles then started laughing, almost like he was making fun of them...  Brock and I got a good laugh out of it.  He loves to make us laugh and smile.  We play hide and seek all of the time and he still loves to "get me."  He blows kisses to people and is very photogenic.  He seems to be adjusting well to Nami, although I think only recently he realizes this baby is permanent.  He sometimes will test me by creeping up to Nami and acting like he is going to hit him, but I think he only does it to get my attention.  We let him touch Nami and try to teach him to be gentle with him.  He gives Nami kisses and doesn't seem to mind too much when his baby brother is crying and interrupting his Yo Gabba show.  Brycen has been doing great, and I know that he will be an amazing big brother to Nami.  I am really excited to watch them grow together.   

Two more months to go and Nami will be getting the first big hurdle out of the way - YAY!!!! I took some pics so everyone could see the kids, but especially for everyone to notice the difference that the NAM has made with Nami.  When he was first born his nostrils were almost completely flat and he had no shape to his nose.  Also, his middle upper lip was very short, which makes for a more difficult surgery to stretch out the skin in an effort to make the lip look normal.  After 2 weeks of using the NAM, his nostrils have more form and the lips have stretched further.  We still have a long way to go, but Brock and I are definitely proud of our little guy as he has been very tough to get through all of this NAM stuff.  Pretty soon our Nami will forget all about this "NAMsense" and will only remember how much love he is surrounded by.

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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.  

33 Week Update - Discovery of his Bilateral Cleft Lip and Palate

Our first ultrasound was at 21 weeks and everything looked great and we also learned that we will be having another boy - yay!!!! Thursday, January 31st, we went to our 33 Week ultrasound and learned that our baby boy has a bilateral cleft lip and palate. If you are not sure what that is, please scroll down to read about it or go to this link: http://www.cleftline.org/parents-individuals/
Everything else looked normal and there is no indication that the clefts are associated with a syndrome, although there is still a chance that it could be syndrome related. The biggest concern is feeding. Until he is born, we will not know how extensive his cleft is nor will we know if he can be breastfed (not likely if he has a bilateral cleft lip and palate), bottle-fed with special nipples (what we are expecting), or require a feeding tube (a feeding tube is usually syndrome related).

Yesterday, Feb 8th, we went to speak with a pediatric plastic surgeon, and they explained the process they use, which helped us get a better understanding of what to expect.

 1st week of life - examine baby, make a molding of his mouth, and put in a NAM (see picture below)

A NAM is used to help form the nostrils, narrow the gap in the hard palate, and most importantly lengthen the philtrum and outer lips in his first 3 months.  All of these things contribute to an easier and better outcome repair for the child.

3 Months - Reconstructive lip surgery
                  Reconstructive nose surgery
                 Soft Palate Surgery (the palate in the far back)
                 Tubes placed in his ears (All of this will be done in one day. We will stay overnight with him at the hospital and should be home the next day.)
 Here is a link to show before and after pics of surgery:  http://www.kidsplastsurg.com/photo-gallery/results.cfm?Category=3


18 Months - Hard Palate Surgery
                    Replace tubes in ears (Another overnight in the hospital.)


6-9 Years - Hip Bone Marrow Removal Surgery (to pack in the space in his gum line for his permanent teeth to come in properly)
                  Orthodontic Braces


18 Years - Plasto-Rhino Surgery on his nose (hopefully his FINAL surgery)

There are other methods in repairing his clefts, and we will be meeting with other surgeons to decide which method we are most comfortable with.

We (Brock (35), Mischelle (30), Caden (9), Mara (8), & Brycen(1)) are all handling this news well. We are educating ourselves by reading online, looking at pictures, and meeting with specialists. We encourage all of our friends and family to do the same. We went through an appropriate wave of emotions, and we are expecting the many more waves to follow. We want you all to know that it is okay for you to share your emotions with us as well. We are not asking you to "be strong" for us. He is your grandson, nephew, cousin, or new friend, and we want you to know that it is ok... It is ok for you to be shocked, speechless, afraid, nervous, angry, sad, or whatever else it is you might be feeling. We know that he will look different, and we are trying our best to prepare ourselves for the 1st meeting when he is born. We also know that we already LOVE him soooo incredibly much and find comfort in knowing that he will be born into the most loving and welcoming family. We are very grateful to have each of you in our lives, and we know that he is already loved by each of you. Please feel free to ask any questions. We are very excited for his arrival and can't wait for everyone to see our beautiful boy!


 What is cleft lip/cleft palate?


 A cleft is a separation in the lip or roof of the mouth (palate). They can occur in anyone, but are twice as common in boys. Approximately 1 in 600 babies born in the U.S. has a type of cleft. Clefts are the fourth most common birth defect in the U.S.

 Incomplete Cleft Palate
 


Unilateral Complete Cleft Lip and Palate
   


Bilateral Complete Cleft Lip and Palate (what Baby Pierce is expected to have)

Sono's of Baby Pierce

Baby Pierce at 12 Weeks

Baby Pierce at 33 Weeks

Left- Older Brother, Brycen at 34 Weeks with no cleft
Right - Baby Pierce at 34 Weeks with bilateral cleft