MY BEST FRIEND, JOE

Who knew that one day my best friend would be Joe?  I am having a cup RIGHT NOW!  My sweet little Priya didn't go to sleep until 1:00 a.m. this morning.  Then she got up at 3 something and 5 something am....and I am not sure when my day actually began...1 am?  3 am? 6 am?  9 am?  I am such a tired momma today!

I have officially become THAT woman!  You know the one...the one in the cartoon drawings...the one with the messy hair in the curlers, bags under her eyes, and wearing her robe all day.  I am THAT woman!  There is a group of Jehovah Witness ladies that keep sporadically stopping by my doorstep during the day to drop off fliers, and they always come on the days when I had a rough night, get up late, and am wearing my robe to the door at 10:30 a.m. or noon.  But, these ladies are smart, because two stay in the car and two come to the door, and the one that always does the talking is an elderly woman, maybe in her 70's.  She of course talks about something we have in common, babies (she has had and raised three, so she knows something about them).  I like her...can't help it, so I haven't told her to please stop coming.  I don't engage in much conversation but smile politely and accept her fliers, because I am standing at the door, hair a mess, robe on, bags under my eyes, and holding my sweet baby who has suddenly decided sleep is good (during daylight hours at least).  Part of me likes seeing her just because she is a likable old lady and reminds me a little of living in my late teens/early 20's when I went door-to-door as a conservative young Adventist Christian.  The other part of me wishes I had the courage to be honest and tell her I am not reading her tracts (I am actually wasting her time).  I empathize with what these ladies are out there trying to do, sharing a message about something/Someone they love, hoping that I will see God the way they see Him.  I do "see" God.  I don't see God the way they do.  I do appreciate that they have the best of intentions, though, and so I will probably seem them again in a couple weeks when they show up to my doorstep again, unannounced.  Hopefully my hair will be done and I will have my clothes and a fresh face on when they stop by.

THE CUSS WORD THAT STARTS WITH A "G"

I have a new cuss word, and it starts with a G.  I hate the G-tube!  There is something called granulation tissue that is supposed to be part of the body's healing process, but it's NOT a good thing when you have a G-tube.  It causes the stoma site to ooze this yellowish to yellow-greenish goo and bleed.  Priya's body seems to be really good at creating granulation tissue, so her g-tube site tends to ooze quite a bit, which leads to skin irritation under her dressings, despite multiple changes a day.  We had to get granulation tissue burned off with silver nitrate today.  This is the second time since she has been home that I've had to take her to do it. Today, the nurse told me I can buy something called alum powder and mix it with water to make a paste and basically take care of it myself at home.  It does the same thing as silver nitrate.  She gave me a different kind of dressing to use called Mepilex, so hopefully that will help. I also found a site where I can buy bamboo G-tube covers online.  The covers are made by a pediatric RN who fosters children with G-tubes and has good experience with what works and what does not.  Supposedly, bamboo is more absorbant than gauze and cotton and therefore decreases irritation and growth of granualtion tissue.  I hope the covers come soon, as I am anxious to try them!  It is an added bonus that they can be ordered with cute designs on them...much more interesting than gauze and Mepilex, AND they are reusable, so they are green too! 

Priya is growing well; she weighed in at 9lb 11oz today!  Mike was off today, so he went with us to the surgeon's appt., and then we went out to lunch and gelato afterwards.  Priya slept through it all, giving her mom and dad some one-on-one time.  It was an enjoyable day...except for the G-#*@!

COFFEE TALK

It's official!  Mike and I decided that Priya is not allowed to date until she is... 7 weeks???  Priya went on her first date with Caleb Wilson today (to the Frothy Monkey), chaperoned by their moms of course.  Caleb was a perfect gentleman--quite the charmer even--with blue eyes that light up the room and a smile that made even MY heart go pitter-patter.  Unfortunately, Priya didn't seem to notice.  She was primped and pretty and ready to go until she got into her car seat, and then she pretty much slept through her very first date and gave me quite the look of frustration when I tried to at least wake her up for a good-bye pic (gotta have something to remind the handsome young man to look her up in a 18...I mean 35...more years).  I, on other hand, SO ENJOYED having brunch and a little coffee talk with Jo Ellen and her sweet baby boy.  Hopefully Priya with join the conversation next time.

SHOOTING FOR THE STARS

Priya downed her bottle in 15 minutes during her feeding evaluation today! Her speech therapist was so impressed at how much and how quickly she has made improvement!  GOLD STAR!!!  The therapist explained to me that even though she is 6 1/2 weeks old, biologically she is only 2 1/2 weeks old due to being premature, so some of the problems she has had with feeding are not only due to her large tongue and cleft palate, but also due to her biological age. So, this little girl has had a lot to deal with.  Every few days you can see she is making noticeable improvement, though; I am such a proud momma!!

Also, Priya is going to be a STAR!  She was asked (via her mom) to be in a teaching video for new feeding/speech therapists.   This kid is destined for big things, I tell ya!

FOLLOWING UP, GROWING UP, LOOKING UP

Today, Priya had a follow-up appointment with a NICU neonatologist and nutritionist at the Children's Hospital.  So far, she has been home almost three weeks, and she has also had two appointments with the pediatrician, two with a feeding/speech therapist, two with the surgeon, and one with the oncologist (due to increased cancer risk...not because she has it).  By the end of the month, she will have another appointment with the oncologist, lab, ultrasound, nutritionist, and surgeon.  Keeping up with her appointments is practically a part-time position!

Priya is eating so well!  She has been guzzling her bottles and still seems hungry, so we decided to up her feedings today.  She actually smiled when the neonatologist and nutritionist said that, which gave all of us a good laugh. We hardly use the G-tube now.  Sometimes we wonder if it was really necessary, but I guess with her large cleft and large tongue, it was hard to know how she would be able to handle feeds.  And, they tell me it will come in handy with her cleft surgery in a year.  I guess that is how we will have to look at it, but considering how hard the surgery was on her (and us) and how she had to have a major surgery and has two scars she wouldn't have had to have...it bothers me to think it might have been unnecessary.  Also, just dealing with the tube gives additional risk of infection or worse.  Then, there is the daily maintenance of it.  Retrospection isn't always healthy though, so we will just try not to dwell on it.

Priya is just over 9 pounds!  The doctors and nutritionist are very pleased with her growth.  They say she is right on target for her. She's not very big for a baby with BWS, only in the 25th percentile for her age.  Her tongue is big, but she really seems to control it very well now.  We've even gotten comfortable not using the apnea monitor at night, because we don't worry so much about her having a blue-lip episode.

A new medical concern is that she has developed an umbilical hernia.  Although the surgeon did give us a heads up that she might develop one, THIS IS A BUMMER for us.  There is a chance it will close on its own by the time she is one.  If not...another surgery for her.  {:0(

The fun thing that Priya is doing right now is looking more alert and giving more eye contact.  She pretty much keeps her parents melting with those big, beautiful, brown eyes.

HOW MANY HOURS IN A DAY?

I think I need to recheck my elementary school education.  I am pretty sure there are supposed to be 24 hours in a day, but I'm not sure about that anymore.  Where does the time go?  By the time I feed Priya, change her diaper and get her settled down (because she is pretty much only happy when snuggled up to mom), and pump, it seems like it's just a matter of minutes before she is up and we are doing it all over again.  I am not getting much else accomplished.  If it wasn't for an extremely supportive husband, I'm not sure anything would get accomplished in this house at all!  I don't know how single moms do it, or how moms with dudd dads do it!  I do tell myself a lot that I need to not worry about things like laundry, ironing, cooking, and cleaning because those things will always be there, and Priya won't always be this sweet little bundle of baby, BUT there is that certain nagging in the back of my head, though... I want to do it all!

Mike and I went out on date #2 last night.  We wanted to go see an art exhibit of lights at a local botanical garden, but there was a private event, and we had to leave.  So, we just went to dinner and grabbe
d some coffee to go.  Priya slept all the way to and from our date.  She woke up hungry as we pulled into the driveway.  The car seat seems to knock that girl out!  It is tempting to want to bring that into her bedroom at night, but I don't.  ...but it's tempting...

I am not sure what Priya is weighing these days, but she must be growing, because she is just starting to be able to wear some clothes labeled 0-3M.  This is sad  but also fun for me, because I get to "play house" and rotate in some clothes she hasn't gotten to wear.  It's like having a real live doll!  My NB wardrobe was limited, because I thought I was going to have this HUGE BWS baby and didn't buy many NB sizes.  But my 6-week BWS baby is so "HUGE" that most of the clothes I have had for her have been too big, so lots of rolled up sleeves and loose necks.

LESSONS FOR A NEW MOM

Some things I've learned in my first 5 weeks of motherhood so far...

1.  You can handle more than you think you can, and it's usually not as bad as you thought it would be...even when it IS actually worse than you thought it would be (does that make sense?).  Basically, you can handle it, and it's totally worth it when your kid is involved.

2.  Don't use a flat iron on your hair AFTER you've changed projectile-poopy diapers...  NOT a good smell.

3.  Two days in the hospital for preterm labor, $8000+. Two days for delivery, $11,000+... One month in NICU and two surgeries, WHO KNOWS?! A baby sleeping comfortably and peacefully in your lap, PRICELESS!

4.  Be sure to have a better grip on your smartphone when hovering over baby's head taking pics.  Baby's don't like to be woken up that way.

5.  I finally learned how to be a TRUE defensive driver.  It really helps having a baby in the back seat.

...OOPS!  Little one is stirring...  

6.  Some things can wait, some things can't.  When you have a baby, you will learn real quick which is which...

FOOD, GLORIOUS FOOD!

On Friday, my coworkers Sandra and Stephanie brought over a generous supply of homemade chicken noodle soup, bread, pimento cheese, and some amazing sweet potato cake!  Everything tasted great!!  Yesterday, a delivery of five fresh vegan entrees that can be frozen and prepared in 15 minutes was delivered to my door, courtesy of friends from Xaris.  We are stocked up this week, and IT IS WONDERFUL!  We feel so loved...and well-fed!

LIVING IT UP!

Priya had an appointment with a speech therapist for a feeding evaluation and another appointment with her pediatrician on Friday.  So far, she is meeting her goals and everyone is pleased with her progress.  The doctor gave us permission to get her out of the house to enjoy this gorgeous spring weather, so we took her on her first outing yesterday.  Since Nashville is where Mike and I first got interested in art through our friends and artists, Al and Kristin Llamas, we decided it was only appropriate to have her first outing be to look at art!  We went to downtown Nashville to view the Inside Out exhibit.  It was amazing!  You can find out more about it here..http://www.newschannel5.com/story/21899430/new-faces-line-downtown-street and  http://www.tnmuseum.org/Exhibits/INSIDE_OUT/

We are also prepping her for one of our favorite date nights out...a trip to Barnes and Nobles!

In the meantime, she is just being her cute little self.

HOME AT LAST!

Kinda crazy and hectic, so the blog has been neglected, but...WE ARE HOME!  I can't believe we've been home a week already!  Priya was discharged from the hospital March 28th, just two days shy of her original due date.  On April 1st, she turned 1-month old already!  I can't believe it!  She had a visit with her surgeon today, and she now weighs 8 lb 6 oz.   

Grandma and Granddad flew in from Montana to meet Priya for the first time on March 27th.  They were a huge help after Priya was
discharged, taking shifts so I could get caught up on things, including my sleep (living in hospital + new baby at home = sleep-deprivation and near-insanity).  Extreme fatigue + new-mom feelings of inadequacy + hormones = one grumpy mess.  So, we are much indebted to my parents for helping me get some sanity back.  Unfortunately, we had to say good-bye to them at the airport last night.  It is sad they live so far away!

Today, was my first day home alone with Priya.  I was super nervous, but it went great!