Cleft Preparation timeline for Nami

Pregnancy Weeks 33-40 - Researched cleft techniques, interviewed surgeons, and finally decided to use the two stage palate repair  Soft palate repair at 3 months, then hard palate repair at 18 months.  We chose Dr. Richard Ha and his team for Nami's repairs.

Day 1 - March 19, 2013 - Nami arrives.  It is confirmed that he has a bi-lateral complete cleft lip and palate.  Everything else checks out perfectly.  He passes his hearing test.

Day 5 - Nami gets fitted for NAM.  We are scheduled to visit Dr. Trovato every week to readjust his NAM until he has his lip surgery.  (Side Note:  You must clean the NAM by taking the retainer stents out of his mouth, cleaning the Fixodent off the device and the inside of his mouth.  To get the Fixodent out of his mouth, I found that using a dry baby bath rag worked best.  We cleaned the NAM with dishwasher soap and water.  Then putting not too much but not too little Fixodent on the NAM and strategically slipping the NAM back in the mouth and stents in the nose.  Then using a liquid glue to put the tape onto the NAM and lips.  The tape is probably the most important thing to understand, because that is what helps lengthen the philtrum and outer lips for the surgeon.  Then you must change the tape 4 times daily in addition to the NAM cleansing.  This is a very tedious and time consuming commitment.  BUT SO WORTH IT!!!  If at any time you think there is erosion or irritation inside the nostrils caused by the nose stents, please don't use it and wait until your next appointment to get the NAM readjusted.) 

3 Months 15 Days - Nami no longer needs his NAM!  He is scheduled for surgery on July 10th!

3 Months 21 Days - Nami has his soft palate and lip repair surgery, and has tubes placed in his ears.  It was successful!  He has to wear no no's until his sutures come out, and we have to feed him with a syringe and catheter.  (Make sure you ask for instructions on how to clean the ears now that the tubes are in and get scheduled for the post-op appointment.  See 10 and 12 Months) 

3 Months 27 Days - Sutures came out, and no longer needed the no no's.  Silicone on his upper lip, daily massage on his upper lip with vitamin E.  

4 Months - Off syringe and catheter, can finally bottle feed again!

4 Months 13 Days - Stents get taken out of his nose, we also switched him to the pigeon bottle. 

6 Months - No longer need to use silicone!  Still need to massage upper lip with vitamin E.  Will need to do this on a regular basis.  (Side Note:  We start to brush his gums, preparing for teeth to come in.  We used the little teether rubber tooth brush, just to get him use to a routine.)

10 Months - Started to have dark yellow and orange mucus leak out of his ear.  Called ENT and they informed us that we were suppose to have instructions to clean his ears since his tubes were in (back in July!) every week.  Prescribed some ear antibiotics to put in his ear.  Our pediatrician said he had a minor swimmers ear infection, and it cleared up rather quickly.  We now have the instructions to clean his ears weekly.  We use 1/2 cup Distilled Water and 1/2 Cup Peroxide and use a bulb syringe to flush out his ears.  As long as there is no mucus we do not need to use the antibiotics.  (Side Note:  We brush his teeth and massage his lip every morning and night.  He still doesn't like to put anything in his mouth.  He will not try any type of solid foods yet.  He can walk after he has been assisted to stand.) 

12 Months - Hearing Test (Post Op appointment that was never scheduled... this should've been done shortly after his 3 month surgery)  He passed.  His ears looked great!  (Side Note:  He finally eats solid foods.  He can drink from a Nuby Soft spout sippy cup.  He can say over 10 words, he dances and walks independently)

13 Months 28 Days - Pre-Op appointment for his 18 month Surgery to repair his hard palate.

Stay away September! - original post date 4/4/14

As I was putting Nami down for bed tonight, tears started to stream down my cheeks onto his soft curly brown hair.  My sweet boy, my heart is breaking as September draws closer to us.  I love you so much, and I'm dreading the day you're in pain and I can't do anything but hold you.  As you lay here quietly in my arms drifing to sleep, I'm weeping for the pain that is promised to come.  I keep asking, Why?  Why does this sweet little boy have to endure so much pain in his short little life?  Why can't I be the one to endure the pain for him?  All I can do is weep.  I'm so sorry that I can't take it away.  I'm so sorry that it's you and not me.  Good night my sweet baby boy.  I love you with all my heart. 

(written 4/4/14)

A letter to Nami - written on 4/14/14 at 2215

My sweet baby Nami.  There is not a second that goes by where I am not yearning to hold you.  You are THE best cuddler.  Your laughter is so joyful and contagious.  Just hearing it in my head brings a huge smile to my face.  When you giggle, there is always others that follow.  If it's not me or daddy, one of your siblings always cracks up.  Brycen in particular loves to see you laugh.  He will often call after me to make sure I can see that your laughing, and he says "Moooooomma......  Naaaaaami!  hee hee".  It is so sweet how the two of you have bonded so well.  You both share with each other so well, and your faces light up when you see one another.  It absolutely melts my heart.  Whichever one of you wakeup first, you always want to know where the other is.  And once you go into the other's room, you both want to be in the crib together and play around.  You boys just laugh and copy each other and laugh some more.  You both love kissing each other too.  So sweet!  You've also grown very close to your big sister, Mara.  She adores you!  She always asks if she can wake you or hold you because she wants to be close to you, or if she can get you out of your car seat.  She is very protective of you and enjoys pretending you are her baby.  You enjoy giving her kisses and cuddling with her too.  I can't say enough how loved and adored you are by your family.  Sometimes I just stare at your beautiful face and just think how perfect and handsome you are.  How in the world did I create someone this cute?!  You are such a quick learner too.  You have an amazing memory with songs.  There are two songs in particular that you love to hear, Happy and Turn Down For What.  You clap along to the Happy song before I even know which song is on, and you go crazy trying to spin your tables for the TDFW dong.  You also love love love the Froggy Valantines stuffed animal.  You love to sing along and jump around with it.  Your vocabulary may not be very clear but anyone that pays close attention could tell that you have an extensive vocabulary for your age.  It's really impressive.  I love you my baby!  You mean the world to me.  You completely fill my heart with goodness.  Thank you for letting me be your mommy.  The best gift ever!

It's not the cleft!

I'm writing this post because I wanted to share with you how my worries over cleft related issues have evolved.  In the beginning of this process there were so many unknowns.  And because I had a child 14 months prior to Nami's birth, I was cursed with comparison.  What I mean by this is, if anything seemed different from my older child's development, in the back of my head I wondered if it was because of Nami's cleft.  I know that sounds silly, but I have recently joined a few cleft support and awareness groups via facebook and the parents are constantly posting questions similar to my pre-"ah ha" thoughts.  Some of their questions have been extremely silly, such as "My son is a unilateral complete cleft lip and palate and is extremely clingy....  is this cleft related?" or "I have 3 children, and my first two started walking at 13 months, but my cleftie"  (I don't understand why some people use these nick names)  " is 15 months and still hasn't walked.  Does anyone else have this experience with their cleftie?".  Reading these comments can sometimes annoy me because I am thinking to myself, "why does everything have to be about the cleft"... but then I start to remember how many of my questions that were just as silly popped up in my head.  I remember questioning if Nami's fascination with hair was due to his cleft, or thinking he didn't like to put anything in his mouth because of his cleft, and the most recent question was if he would ever drink from a sippy cup  or eat solids because of his cleft, and if he does eat solids will he choke or die because of the hole in his hard palate.  I know, I know.... these may seem silly to you, but these were real concerns in my head.  Well maybe not the fascination with hair, but the other things did concern me.  Fortunately, I have learned that Nami is just being himself.  Even if some of these things are caused by the cleft (which I seriously doubt) it doesn't matter.  This is who he is.  And I LOVE him so much.  I love that he likes to hold my hair while he eats his bottle or suck his thumb.  I loved it when I never had to worry about him choking because I knew he wouldn't put anything in hia mouth.  I loved feeding him his healthy pouches of food and he was perfectly content.  But just so you know, although he still has an unusual fascination with hair, he eats solids, he can drink from a sippy cup (Nuby spill proof), he hasn't had a choking incident, and only liquids come out of his nose.  Seriously, my only concern regarding his cleft these days are: number one - Obviously his 18 month hard palate repair, and number two - do I have anything to wipe his nose.  I may sometimes think about the hole in his palate and still get the ibby jibby's thinking he will get something stuck in it or somehow tear it, but mostly my worries are just toddler related. 

With that being said, this is what Nami has been up to lately.  This kid is so much fun.  He is fearless.  It doesn't matter if he just tripped and fell from the step, he will get right back up and try it again.  We have had many lip and nose bleeds lately due to his "fearlessness".  He loves to be on the bed and lunge forward to fall face first.  He laughs so hard, which makes all of us laugh.  The only problem is he doesn't realize what can happen if he lunges forward off the bed... and he ain't about to, at least not on my watch.  Nami also LOVES familiar people.  Every morning when I get him up, he has the biggest grin on his face and bounces up and down in excitement.  He loves attention and appreciates it.  He will let you know by hugging your legs, giving you kisses, or burying his head in your shoulder.  Although he doesn't pucker yet, he will make the "mmmmmmm" sound and put his lips out there for you to give him a kiss.  He loves kissing his Daddy which is opposite of all of the other kids due to Daddy's often unshaven beard.  Nami says a lot.  I'm not sure if anyone else besides us really understand him, but he can say "Momma, DaDa, Caden, Mara, Brycen, Grandma, Elmo, More, Thank you, I Love you, Night Night, Out, Bottle, uh oh, and Okay?".  He also has a great memory.  He knows Gangnam Style, Turn Down For What, Happy, The Fresh Beat Band theme song, Great Day (by Fresh Beat Band), Twinkle Twinkle, ABC song, and Uh Oh Oh No Whatcha Say (by Fresh Beat Band).  He also has special dances for his songs.  He fits in so perfectly with all od us.  He is also great at sharing.  Brycen and him share everything.  I love watching them take turns and handing toys to each other.  They are so great with one another.  I knew that Brycen would be a great big brother, but I didn't know Nami would be such a good friend to him.  They really are best friends.  I love it!  They always ask for each other and want to be together.  To be honest with you, they have become my best friends too.  We have so much fun together.  All. Of. The. Time.  I am really thankful for my little boys.  That is all.   

SiliGONE Bye Bye! Original date 9/20/13

It's hard to believe that six months ago, Nami was born.  He sure has come a long way.  He is such a sweet baby.  He is always smiling and cooing.  Brycen has also become very fond of this little guy.  Every morning he wants to be a part of our morning greetings to him.  He climbs up the crib where he can peek his head over and then he says in adoration, "Hiiiiiiiii Dada!".  Yes, he calls Nami "dada".  Some of the new things Nami has been doing is playing with toys, scooting across the floor, going jogging with mommy and Brycen in the double stroller, eating rice cereal, and grabbing peoples hair.  One of the quirky things he did as a newborn and still continues to do is grab hair and then wrap it in his hand to suck his thumb.  It is a little awkward.

There are two major things that we have accomplished during his post-op. First, we are finally finished with using silicone on his upper lip... YAY!  His lip is soft, the scars have lightened up, and his lip looks amazing.  I have been nervous about the possibility of him not being able to move his upper lip.  He can move it a little, but it's still very stiff.  I mean, I get that he has never had control of his upper lip because they weren't attached, and since using the medela special needs bottle he wasn't moving his lips much because we did most of the work for him in getting the milk to him.  Which brings up our next big accomplishment...  We switched to the pigeon bottle.  Now that his lips are attached, we felt that he could try the pigeon bottle again.  We tried it in the beginning and was really hopeful to use it because he can control when he wants to eat, versus us squeezing the nipple of the medela special needs bottle to get the milk to him.  At that time, we felt the special needs bottle worked best for him.  My big concern with this was the thought of him having issues with self feeding later on.  So when we were going through the process of feeding him with the special needs bottle during post-op (after we graduated from using the catheter), Brock, Nami, and I were all frustrated with the lack of control that Nami had in his feedings.  We soon thereafter switched to the pigeon bottle, and all of us, especially Nami, felt exhilarated and relieved.  I felt Nami become stronger.  Finally, he had something he could control and I was so happy for him.  He looked at me with the sweetest puppy dog eyes, and I felt him telling me, "Thank you".  And inside, I was thanking Japan for making this awesome bottle.  Arigatou!  It is wonderful! 

(This post was originally written in mid-September 2013)