MINI BUTTON, BIG MISTAKE

So, good news is that Priya was up for a new g-tube button this week and she was able to get the mini Mic-key button, which is half the size of her first one.  The bad news is that I fed her before her appointment like I always do without even thinking about it.  THAT was a mistake!

FULL STOMACH + HOLE IN STOMACH/ABDOMINAL WALL = MILK GEYSER

The poor girl was a mess when they pulled out her old g-tube, and it put her into quite a bad mood!  The good thing, I guess, is that I did this in the doctor's office.  The next time it will be ME putting in a new button  at home in three months!  I will not make the same mistake again!

In other news, Priya is rolling over!  Unfortunately, my full video won't upload, so here is a shorter version.

FIRST FATHER'S DAY

We celebrated Mike's FIRST Father's Day on Sunday! Here are some pics!  He's a good daddy!  

We started off the morning having a walk and brunch at a crepe and coffee house with some very special friends.  Mike had a soccer game, so we had a fun day on Friday to celebrate Father's Day AND my birthday.  He was off work, so we went shopping for some art. We started in the morning with brunch with some friends and their twin babies and finished in the afternoon, hopping around coffee shops and art galleries in Franklin and Nashville and treating ourselves along the way--pretty fun day.  The only glitch was our car getting backed into while we were in one of the coffee shops, so we did have to take a momentary break from fun to deal with insurance and drop the car off at the collision center (never a fun thing to do).  We did find some art at one of our favorite galleries.  It is not the type we were looking for when we started our day, but the pieces made us smile and we couldn't leave without them.  They just made us feel good, which after doing some reading is exactly the purpose of the pieces...to make people smile (photos below).

W

GIRLS' DAY...DAYS

Priya's Grandma and Aunt Bobbi came to visit!  This was the first time Priya has gotten to meet her aunt.  Bobbi was supposed to be making the trip by herself, but  when I got to the airport to pick her up, I found out she had packed my mom! THAT was as cool surprise!

While they were here, we dined at coffee shops and pubs and haciendas. We walked through a magical art exhibit (LIGHT by Bruce Munro) in a botanical garden. We shopped antiques, read in bookstores, and watched the sunset in a vineyard. We talked and snuggled and watch movies. It was a BUSY week!  We will sure miss Grandma and Aunt Bobbi.  I guess will just have to make a trip to see them in the fall.

Priya is growing up fast and all is well with her.  Her G-tube is pretty much healed, which makes it much easier to take care of.  The skin around her stoma looks great!  We were feeding her on her side to help with coughing spells while eating, but she is already doing well with sitting a bit more upright again (speech therapist said to try from time to time as she seems to handle it).  She is smiling a LOT and trying to talk to us, which melts our hearts.  She is also getting better and holding objects!  I love watching her learn to do new things!  It is never boring with a little baby around.

MEETING NEW MILESTONES

My baby girl is growing up so fast!  I have been working with her on being able to hold onto objects, and today she finally did it!!!  I am so proud of my little girl!

COTTON CANDY KISSES...LIKE HEAVEN

It's back to one day at a time since there isn't much I can do about the hemivertebra issue until we get moved to Charlotte and find an orthopedist.  I do plan to ask my pediatrician about it at Priya's appointment at the end of the month.  It's in the back of my mind for now, but why waste my time worrying about something I can't do anything about for at least another month when I can be enjoying a whole month of spending time with my angel?

Being married to a psychiatrist means I get free life tips and tricks, and one of the things my husband has taught me is "being in the moment."  Practicing "being in the moment" actually rewires your brain. It is a REALLY good exercise to do when you are feeling anxious about something.  It slows all the internal stuff down.  To practice, you basically just really relish a moment in time, whether it be driving down the road or eating a mint or feeling the breeze or sun on your skin.  You describe the moment to yourself using all of your senses and then note how it makes you feel too.  I often forget to "be in the moment," but sometimes I remember to do it.  This afternoon I did it while feeding Priya her bottle and kissing the top of her head (one of my absolute favorite things to do in the whole world).  I won't go into all the descriptions of the moment, but I asked myself how I could describe how kissing her head feels, and the thought popped into my mind that kissing her head and lightly rubbing my lips across the wisps of her hair is like taking a small piece of cotton candy and brushing it ever so lightly across my lips.  It is literally the sweetest moment I can think of.  Then I thought how it made me feel, and all I can say is "like Heaven."  It seems to me that my heart cannot possibly be any fuller than in the moments when I am sitting quietly with Priya kissing her sweet little head.  I wonder if that feeling of heart-fullness, connectedness, peace, and bliss is what all the world wonders after in their religions.  It's like a love that cannot be felt any deeper, wider, or higher, wrapped into a moment of time connected with another...a God-moment for sure.  If only we could remember how GOOD it feels to be in this state all the time, I think it would be easier to empty one's self of selfishness and really try to connect with others around us.  Then we'd all be living in Heaven.

(It's also quite amazing to kiss her little toes too...LOVE!)

OLD GHOSTS POPPING UP

Way back when Priya was in the hospital, the doctors saw a spinal abnormality on her X-ray.  They called it a hemivertebra.  They didn't seem too concerned at the time and just said she'd have to follow up with an orthopedist when she was older.  It looked scary to me, and I did wonder at the time how that could NOT affect her looking the way it did, and I asked, but the doctors made it sound like no big deal.  Besides, we had bigger fish to fry at the time.  For some reason, I decided to look it up tonight, and I'm a little worried about what I am reading...okay, maybe A LOT worried!  It seems it is very, very likely to cause scoliosis, kyphosis or lordosis (depending on the kind of hemivertebra; I think Priya's is lateral from what I remember on X-ray, so scoliosis would be her problem I guess) and often requires surgery to prevent deformity and neurological difficulties and pain later.  Hemiverterbra is often found in conjunction with other congenital abnormalities and especially associated with "syndromes" (at least no surprise there to us, as we already know about all of those by now).  Evidently, the earlier it is found and corrected, the better. Only 25% do not progress and remain "dormant." 

ARE YOU KIDDING ME?????  ANOTHER potential  future surgery for my sweet baby girl???  Aren't the omphalocele repair, G-tube insertion, cleft palate and possible tongue reduction and umbilical hernia surgeries enough?  Now maybe a spinal fusion, vertebral extraction, and/or a brace or something like that?  I want to talk to an orthopedic doctor PRONTO...yesterday! What is everyone waiting for?  Why didn't someone explain this finding to us better?  WHY wasn't an orthopedic doctor one of the MANY doctors they scheduled us to follow-up with after discharge from the NICU???  What the heck?!!!!  I hope an actual orthopedist will tell me how completely wrong I am and that I am somehow reading the wrong journal info and that my sweet baby girl will likely experience little or NO symptoms or not need any more surgeries!  UGH...heartsick for my baby girl.  I hope so badly that I am worrying for nothing...

It is 2:00 a.m., and I have been combing through my discharge report and paperwork from hospital and NOTHING mentions the X-ray or its findings, which means my pediatrician was not given that info, so NO WONDER no one has been referring me to an orthopedist!  I am so frustrated I let this slip through the cracks.  

One day at a time?  BLEH... Right now I don't feel like taking it one day at a time.   I am so frustrated...

A WORK IN PROGRESS

So, Priya is doing great! We thought things couldn't get much better with her, but she had an appointment with her speech therapist, and evidently things could get better, and they already have!

We have been really proud of Priya, because she hasn't had to use her g-tube for feeding for quite some time.  We have noticed some things with her oral feeding like needing to make frequent stops while drinking her milk, rolling the nipple of her bottle around with her tongue, and more recently coughing during feeds (I can only describe it as slightly chaotic feeding behavior), but we thought it was all just stuff that was normal for her due to her cleft and tongue and was the best she could do.  We did talk to her ENT about the coughing, and he thought she might need a swallow study and recommended we see what her speech therapist thought.  Her appointment with her speech therapist was today, and come to find out, all we needed to do was feed her laying on her side, and WA-LA!  We've been applying the new positioning today, and she has been able to keep her bottle in her mouth during her feeds and pace herself while taking good breaths and drinking.  She appears to be calmer, and she doesn't cough.  The speech therapist said she thinks her tongue was blocking her airway during feeds and that laying on her side helps roll it away.  She also said that the coughing reflex is probably just showing up more recently due to her prematurity.  She will see Priya again in a week and thinks that we probably won't need a swallow study--yay!  So proud of my baby girl!  She has really had to deal with a lot.  It kind of bums me out that she has had more difficulty breathing during eating than we were even aware of due to the immaturity of her reflexes, but now that we know what might be going on and have been able to change some things, she is showing  how capable she is of doing things even better when given the proper care.  Mom and dad just needed the right info.  Love my baby girl!