MERRY CHRISTMAS!

I LOVE YOU TO THE MOON AND BACK!

Holidays are so, so, so much fun when you have little ones around! NO ONE ever told me how much more awesome life gets when you have babies!!!

We don't have an Elf on the Shelf this year, but we have been having some elf antics going on around our house!  We found this little elf flying through space on Priya's spare oxygen tank on December 16th!  She's been into all kinds of things since December 1st.  Yesterday, she was baking cookies.  She has used our furniture as a jungle gym, taken rides in the dryer, roasted marshmallows in front of the fireplace, rowed a boat in the bathtub, and all kinds of things!  She is the busiest elf I have ever seen!  You never know where she will pop up next!

Mike's parents, brothers, Uncle Cecil's family, Mama, and Lee's girlfriend is joining us for Christmas.  It's going to be a FULL house!  This will be the first time Mama gets to meet Priya!  We are excited for Christmas around here!  To gear up for the big day, we started off the month attending a neighborhood live nativity, we've gone on several drives to see how neighboring towns and cities have decked their halls, and Priya and I made holiday crafts with our neighbors across the street. The only think we DIDN'T do was get Christmas cards sent out, and I am still feeling a little bad about that--especially this year!

The big news on my side of the family is that both my sister's family and my parents will be moving into new digs before the end of the year!  I can't wait to go home and see their new places!  I wish we didn't live so far away--especially during holiday season.  They are MISSED!

As we come to the end of the year, we are SO THANKFUL for the greatest gift 2013 has given us, our beautiful, amazing daughter!  Forget candy canes!  Life has never been so sweet!  She brings wonder and joy and so much love to our world!  When you bring a child into the world, you want all that is good in the world to multiply a hundred-fold for THEM!  You wish like never before that wars and hunger and disease would be banished from the earth forever!  I guess that is one of the messages of the season--how a small, helpless baby can come into your world and change everything!  Let us make the world better for everyone's children and live every day with a little more peace, joy, and good will towards others!

ELF ANTICS, Days 1-17

HOLIDAY FUN

It seemed like November flew by in a week!  We had a visit from my dear friend, Mengkha, from Orlando, FL, for Thanksgiving.   She brought a friend, and we ate, we watched Bollywood, and we ate some more!  I sure wish Auntie Mengkha lived much closer so we could see her more!

Mike passed his final boards, so he is officially a BOARD CERTIFIED physician!  We are so proud of him!

Now the first week of December has flown by almost as fast as Santa's sleigh!  Priya is NINE months old and wearing 18-24 month clothes!  It seems like she is doing something new every day!  She is working hard at crawling by picking her belly off the floor and sometimes scooting backwards a bit.  She is working on balance by testing herself to see if she will topple over.  She thinks she is hot stuff when she doesn't.  Her latest is putting her arms up above her head to see if she will lose her balance.  Another new thing Priya is doing is attempting to pull herself up on furniture. She has started making "neh" sounds. As her vision continues to get sharper, it is fun to see her discover the world around her. One morning, she tilted her head to one side and just stared into my face for the longest time.  I was wondering what on Earth she found so interesting, when she gently reached for my eyelashes and pinched them between her thumb and finger and smiled.  She has started noticing art on her walls, moles on my skin, and all sorts of things; EVERYTHING seems to amaze her!  Priya LOVES to dance!  I figure this is good for my emotional/mental health, because I end up dancing every day just to see her smile so big that it must hurt her face a little.  Priya is the happiest baby, which in turn, makes me the happiest momma!

This time of the year has been so much fun living in our neighborhood!  We have the coolest neighbors to do stuff with.  We recently met them at a neighborhood church for a live nativity and tree lighting service.  It put us in the holiday spirit immediately!  Today, Priya and I will be walking across the street to make holiday crafts with some mommies and kiddos.

It's that time of the year when little elves turn up on shelves and interesting places until Christmas.  This is a peak of what my little elf has been up to!

HAPPIEST HALLOWEEN EVER!

This is a first Halloween for both Priya AND Daddy!  So much fun!  We enjoyed an awesome neighborhood parade, music in the park, and trunk-or-treat with our neighbors last week.  Tonight, we are meeting up some neighbors and some of their pre-school class to have pizza and then go trick-or-treating (guess who will be enjoying the candy this year).  Holidays are SO MUCH better when you have kids!

If this is our future, I am feeling better already!  

IT TAKES A VILLAGE

They say it takes a village to raise a child.  For us, it takes 10 specialists.  Fortunately, though, that has been reduced by one after today.  Priya had an appointment with her allergist this afternoon, and it looks like we will no longer be needing her services.  This is good news for both Butch and Kitt--even dairy--but may not be so good for Priya's tonsils, as this means they are likely enlarged due to organomegaly secondary to BWS and not an allergy. This means that if they cause too much trouble with breathing and sleeping, they will have to be removed. Time will tell.

EVER-PROUD

I was playing with Priya this morning, and we had a moment.  Well, I had a moment anyway.  We were playing with one of those toys where you stack color rings on a peg.  Today was the first day she took all the rings off by herself.  But then she ALMOST got one of them back on the peg, and I gasped and almost cried!  I thought to myself, "What is the big deal, Tanya?  Even monkeys can put the rings back on the peg."  But it's my little girl--the one that started off as a crying little baby in the hospital, completely helpless--and now she is growing up and learning things so fast!  This week she has also started making the sign and "uh" sound for "up."  I am so proud of her!  Now I get it.  Parents are proud of everything their children do, even though other children may be doing a hundred cooler things or even doing the same things faster or better.  We are just proud!  Isn't that great, though?  Isn't it a wonderful thing to have someone always proud of you?

TODAY, I LOOKED INTO THE FACE OF GOD.

While watching Priya sleep this morning, I pondered some things in my mind... Like, how easy it is to see

'God" in the face of your own child--all the Love and Power and Mystery of the Universe wrapped up in the package of that face, those eyes, that nose, those lips.  But, then, if every parent with a stable heart and mind can see "God" in the face of their own child, why is it so difficult for us to see "God" in the face of every person we come in contact with (the stranger on the street, the coworker,the client, the patient, the other driver on the road, the criminal, the addict, the homeless person, the politician in the news, the spouse)?  Aren't we all children that have grown up?  Haven't we all been the face of "God" to a parent?

Love is like a magnifying glass that helps us see what we cannot see without it.  It takes thoughtful or prayerful awareness to look at everyone through the lens of Love and see "God," but it's what our world needs the most.  It's no wonder Jesus said that if you have shown a kindness to even the "least of these," you have in truth done it to Me.

I WAS BLIND; BUT NOW I SEE.

Before I saw my daughter's first congenital birth defect on ultrasound at 12.5 weeks pregnant, I was a bit blind, and I am not sure why to be honest. The first time I saw a baby with an omphalocele, I didn't like what I saw. But then I became a MOO (mother of omphalocele), and suddenly all I could see were strong, beautiful, and amazing babies. Then I found out my daughter has Beckwith Wiedemann Syndrome, and when I first saw pics of BWS babies, I didn't like what I saw. Then I became a member of a BWS support group and eventually welcomed by BWS baby into the world and fell in LOVE with what I saw. When I first saw babies with clefts, I didn't like what I saw. Then I learned my daughter had a cleft palate and became a part of the cleft lip and cleft palate world, and now all I see are seriously gorgeous babies. I am so thankful my world is bigger, better, and more beautiful! I am so grateful to be a part of three amazing communities of babies, children, parents, and adults.

I don't know WHAT was up with the crazy sleep study.  Priya's oxygen levels seem to be just fine no matter what position she is sleeping in.  She does have an occasional drops in her O2 saturation, but they are VERY rare (not even once a day) and only last a second.  She sleep restlessly and snores a lot and generally sounds terrible when she is sleeping sometimes, but her oxygen does not seem to correlate with the findings of the sleep study.  I definitely think we need a redo.

Priya seems to be doing well.  She is growing--oh my, is she growing!  She loves to eat, that girl!  Avocados are the only thing she doesn't seem to be super-fond of.  She scarfs everything else down, including any kind of medicine I have to give her.

New things she is doing include reaching for us or for whatever she wants to have, including food on the table.  When my sweet little girl reaches for ME...melt, melt, melt!  She is also rolling from her back to tummy more, which is great, because she still isn't a huge fan of laying on her tummy.  Pat-a-cake makes me laugh now, because I will go through the motions with her hands and then sometimes just have her watch me.  When I tell her it's her turn, she will take my hands and make me do it again.  Soooo CUTE!

TURBULENCE

Priya's first flight went smoothly.  I had spent two months prior worrying about the potential for disaster of flying alone with her to Montana, but she was an amazing travel partner!  We had a great time!  She got loads of attention when we got there, met her great-granddad, cousins, and Uncle Craig, went shopping, watched her cousin play volleyball, went to kindergarten to see her aunt's class, visited her grandparents at their workplaces, and pet a a teeny, tiny puppy.

Unfortunately, the turbulence hit when we arrived home and met Priya's ENT doctor to go over the results of her sleep study--NOT GOOD!  We honestly thought going into the sleep study that it was just a formality prior to her cleft surgery.  Boy, were we wrong!  The doctor was very concerned over the results.  She failed the study and failed it miserably.  She stopped breathing over 150 times, and her oxygen saturation went as low as 80% at least 30 times--if I remember correctly; almost everything he said went out the door the moment he mentioned Priya would likely need a tracheotomy.  He diagnosed her with severe obstructive sleep apnea and thought she needed a tracheotomy and tongue reduction prior to her cleft palate surgery. The tracheotomy would be a way to bypass her large tongue that falls back and obstructs her airway at night. The doctor did say we can try a CPAP to force oxygen into her airway at night, but most children don't usually tolerate it well, and he isn't hopeful it will be a solution for her.  He told us he hopes she proves him wrong.  I asked him about a nasal trumpet like she had towards the end of her NICU stay which is a tube inserted into one side of her nose that bypasses her tongue through one nostril, which he admitted could be an option, but likely not a good long-term fix, as older babies don't tolerate them well and like to pull them out. The type of tongue reduction her ENT suggested she needs (base of tongue ablation) involves a lot of post-op swelling and also affects the muscles that assist in swallowing.  Even if other avenues to control sleep apnea worked for now, he would want a tracheotomy before doing a tongue reduction.  We have a STAT CPAP trial/evaluation first thing Monday morning.  We are hoping above all hopes that the CPAP works.  If not, a tongue reduction, she will have a tracheotomy by mid-November at the latest, a tongue reduction at the end of December or early January, and her cleft palate repair around her first birthday.  Not the best year of firsts for my sweet girl!


UPDATE:  I love Priya's pulmonologist! He wants to hold off on CPAP and try having her sleep prone (on tummy) on a resQ wedge with a pulse ox first. Ordering her oxygen to be used if her O2 drops below 90. Will see her in two weeks and may reorder a different type sleep study. He said her nasal pathway is irritated and swollen ( from eating solids with large cleft palate) and seems to be obstructing air also (besides large tongue) and wants to treat that first. She also has another ear infection, but that's nothing new. He didn't even discuss potential for trach at this time except he wants to avoid. Relief!!! He disagrees with doing base of tongue ablation because results are poor and it's a horrible procedure!

UPDATE II:  Our first night with the pulse ox and O2 went awesome!  Priya slept MOST of the night on her belly, and her oxygen dropped to 94% only once.  The rest of the night, her oxygen saturation was 98-100%.  

GROWING, LEARNING, CONQUERING NEW THINGS

Priya is halfway through her first year!!!  She is six months old!  I can't believe it!  She had her six month checkup today and weights 16 lbs 8 oz and 25 3/4" tall.  So far, everything is going great!  She had her first taste of solids (prunes) on Tuesday, which she absolutely LOVED!  She tried taking the spoon from me and reached for the bowl.  That girl loves to eat!  

She has been working on getting her toes in her mouth for a while now, but finally managed the feat (of her feet) yesterday!  I haven't managed to get a pic just yet!  She still hates tummy time and is trying to bypass anything to do with it, so she has been trying out a different way to get around...back crawling.  So far, it isn't working out for her.

Priya meets with her orthopedic doc for the first time tomorrow to start follow up of her two hemivertebrae. Hopefully nothing with become of them, but better to watch them than not.  Tomorrow night, the two of us will be spending the night away from home for a sleep study.  It is something she has to do before her eventual cleft palate surgery or tongue surgery (if needed).

We had a visit from Priya's Uncle Lee and her Aaja and Aaji over the Labor Day weekend.  It wasn't a very long visit, but we soaked up the family time we could get.  We also Face Timed her Uncle Joey.  Next week, the two of us fly to Montana to see MY family!  My brother-in-law, Craig, and my niece and nephew have not met Priya yet, and my dad hasn't seen her since she was a month old!  Priya will also get to meet someone very, very special for the first time, her great-grandad!  Unfortunately, we have to leave her daddy behind to work and will miss him terribly. 

I AM RICH!

I am RICH! I am so fortunate that I live in a home. I can control the temp to make my sleeping daughter comfy. I live in a "safe" neighborhood, and just in case it's not, I have an alarm. I was able to put her to bed with a full stomach tonight, as I do every night. If she falls sick tomorrow, I have access to good medical care. Her clothes and bedding are clean. Disease-carrying pests are controlled. My daughter has the same opportunities as anyone else, nothing to hold her back. If she applies herself, she can do anything. Some people cannot say ANY of this. I am rich!

AH!  FRIENDS!


Mike and I had a WONDERFUL weekend seeing good friends from Nashville!  Bill and Shelly Colburn came for a very brief visit, but we are so appreciative they drove all this way to spend some time with us.  It just felt so GOOD to be in the company of good friends!  The moment they left, Mike and I wanted to follow them and yell DON'T LEAVE!!!!!!!  That is the ONE thing that really sucks about living in Charlotte right now...our friends aren't HERE!

THANKFUL FOR ALL THE GOOD

I am SO THANKFUL every day for all the good (and there is lots of it) in my life.  I have a loving and supportive family, a husband who is a wonderful, intelligent, kind human being, good friends (who I miss terribly BTW), health, a career I love (when I am doing it), a home to come back to, food (lots and good quality) in my kitchen, and my ever-so-sweet, strong and beautiful baby girl.  Sure, we have had some rough spots in our journey with her and we will have some more coming up, but overall, she is healthy and thriving!  She is AMAZING!

This week, another family in one of my support groups lost their sweet little girl.  She was just a month younger than Priya.  Her omphalocele was much larger and more complicated that Priya's, and her road has been difficult.  Lots of large O babies do well like Priya, but some just have a tougher time, and Feighlyn had a really tough time.  Her and her family have been going through one obstacle after another, and many of us have been going through the obstacles with them emotionally.  The MOO group is a very tight-knit group, and we follow eachother's families throughout our little O-babies' lives.

I am so fortunate, so very fortunate.  There is no rhyme or reason to why I got the beautiful Beckwith Wiedemann baby with a small O and this family got the beautiful large omphalocele baby with all the complications.  It just is, and it's...hard...and sad.

The fact that we have technology to connect us to other people who can feel our joys over little things that other parents might very well take for granted and worries that other parents will probably never have to deal with is such a blessing.  We can check in with one another, ask questions, share stories and anecdotes, and cry with one another.  We can vent to people who understand when no one else can.  We can let each other know when we will be in someone else's neck of the woods for a meetup.  We can pray for or send someone supplies we no longer need to someone who does.  It is awesome to have such a community with its connections.  So much good comes from it, but also some heartache, and this week has been a heartache week.

WHEN THE LIGHTS GO OUT

When the light goes out, how great is the darkness!

Priya is the light of my life! She lights up my world like no one and nothing else can.  She makes every day brighter by just being in it.  I cannot imagine going a day without seeing her beautiful, bright eyes and sweet, happy smile!  This week, one of my Beckwith-Wiedemann families lost their little light.  He was just two months shy of his second birthday.   My heart hurts so much for them.  

It is not uncommon for kids with BWS to need trachs to assist with breathing through their airways.  Eventually they are able to be weaned from their trachs, but it can take some time.  When Priya was in the NICU, there was a certain point where we thought she might need airway assistance by trach, but fortunately that wasn't the case for her.  Well, this little boy did need one, and he pulled it out while sleeping this past week and and never woke up.  

Ouch.  Heartache.