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!

MY LITTLE MASTERPIECE

It is amazing how something everyone has becomes a mind-blowing masterpiece of kissable perfection when it rests on your little baby's body.

LOOKING AT THIS SWEET GIRL = SO MUCH JOY

 

Before I had a child, I THOUGHT I knew what love was.  But then I had a child, and it's like I became a cosmic sponge soaking up all the love in the universe and wanting to  drench her with it every time I look at her.  All I can do is cover her with hugs and kisses and "I love you's," but it doesn't feel like enough.  This...is...amazing.

TORNADOES IN OKLAHOMA...UGH

I can't help but watch every video and read every article about the OK tornado. Part of it is my heart hurts for those people in their losses and rejoices for those who reconnect with loved family members and pets. Part of it is curiosity and updates. Part of it is probably because I am scared to death yet fascinated by tornadoes. 

This morning, I cried tears of joy watching reunions and cried tears of heartache hearing stories of loss.  One story really got to me though.  A mom with her 7 month-old baby took refuge in a freezer of a 7-Eleven.  Their bodies were found apart from one another under the rubble.  Tears rolled down my face as I held my sweet Priya in my arms.  I hugged her especially close and told her I will love her so much as long as life shall last.  Who knows how long that will be?  I HOPE I can enjoy the gifts I enjoy of this life for as long as possible.  My life is wonderful...my husband, my family, my friends, our health, the career paths we chose...life is good!  But, if tomorrow never comes, I have to say that I have already experienced the best life has to offer.   She has been wrapped in my arms all morning and is now laying in my lap snoring in her sweet-baby sleep.

REDISCOVERY

Recently, an artist friend of mine created a visual diary that showed the evolution of her life as a person and as an artist.  Thinking I knew her well, I realized I had a lot to still know about her and learn about her.  I enjoyed reading her visual diary.  It was so enlightening, and in so doing, it was like rediscovering her in a way.

When I was younger, I used to write poetry--a lot!  Just recently, after the birth of Priya, I started writing again.  Well, we are getting ready to move in the next couple months, so I've been purging and packing up our office yesterday and today.  In so doing, I have come across old love letters between Mike and I (a treasure for sure), and also some old poems (many to Mike; we were dating at the time).  Sometimes I forget about them.  Here is one from 2005.  I went to a private, Christian college, and I gave it for a morning worship for one of my classes.  It is funny how reading the words take on a different meaning to me now.  Now, I read them with new eyes (rediscovery)--eyes of a mom wishing only the best and most beautiful things life has to offer for her daughter.  I love her so much!

HAPPY, HEALTHY

Priya had a follow-up appointment with the ENT she saw in the NICU for her cleft palate and tongue.  She is doing great!  She does have some fluid behind her ears, which is expected with a cleft palate (it was there in NICU too), so she will have tubes put in her ears when they do the cleft repair.  Otherwise, she is a healthy happy girl...as you can see below...  We went to dinner with her daddy after her appointment, and then home for a walk in the neighborhood.  It was a great day!

MOMMIES STILL NEED THEIR MOMS

I am sitting in front of my computer tonight, looking down at my lap at my sleeping daughter.  Today is Mother's Day.  I am a mommy.  And, I am thinking of and missing MY mom.  So, here is a pic of my two P.R.'s...Pamela Rose and Priya Rose. 

I know how to love my daughter, because I am a daughter who has been loved first.

I have thought many times of my two grandmothers today, separated from us in body but here in loving memory.  Bodies fail us; love never fails.  Love lasts as long as there is someone to receive it and pass it on.

To Priya Rose with Love

Your head of hair, soft, wispy, kissable, a palpable place to receive my affection

Your eyes, big, brown, beautiful, a reflecting pool to gaze into all day long

Your nose, cute, noisy, making your wonderful presence known

Your lips, dainty and feminine, a promise of the young woman you will become

Your hands, strong, overcoming obstacles and grabbing at life

Your legs, determined, powerful, carrying you anywhere you want to go, because you can do anything

Your skin, a kiss from Heaven, a special touch, a little bit of him and a little bit of me, but completely you… wonderful, strong, beautiful you.

      

       --Mom

      (Mother's Day 2013)

A PICTURE SAYS A THOUSAND WORDS...SO THEY SAY

Priya had a BIG week...lots and lots of snuggles, eating at coffee shops and restaurants, a walk in the park, and shopping with her Aaji.  It has been said that a picture says a thousand words, but I think this one says only FOUR..."I love you, Aaji."

Today was an enjoyable day.  I still probably sound a little stuffy/runny, but my cold has subsided for the most part.  Priya and Aaji are still in good health.  The three of us went to the Frothy Monkey for lunch and then Aaji went for a pedicure.  We came back and had dinner prepped by My Veggie Chef.  Priya has been awake and in pretty good spirits most of the day.  She has taken some small catnaps.  I hope this means she will sleep well tonight.  Last night she woke up almost every hour.  It was kind of exhausting.  

Here is a video for Priya's grandparents in MT and for her daddy, who is in NC tonight.

Priya's Aaji is here this week while Mike goes to Charlotte to finalize some things for the move.  Priya rolled over on her side by herself this week!  I am pretty impressed with her!

I got a pretty bad cold this week, but so far Priya hasn't caught it!

2 MONTHS OLD

Priya turned two months old today.  WOW!  Where does the time go?  The fun thing she is dong now is smiling when she is looking at us more and cooing...totally wins us over (as if we needed it). 

Unfortunately, she had to go to the doctor today for a check up and immunizations.  All went well, but I think me letting someone give her shots when she wasn't expecting it hurt her feelings, which in turn hurt mine. 

Priya is 10 lb 5oz, growing in the 25% for weight.  She is 22.25" long, which put her at the 40% for length.  She is breathing well throughout the night, so we got the discharge order for her apnea monitor.  She had an abdominal ultrasound, AFP labwork, and a brief visit with the oncologist for her cancer screening yesterday, and that all looked good.

Mike started paternity leave today.  He cooked dinner and is going to stay up with her ALL night!  I am so excited!  What am I going to do with all the sleep I am going to get?