Thursday, January 31, 2013

Omphalocele Awareness Day 2013!

Happy O'Day!  ;)  Believe me, if you are like me, you didn't even know such a thing existed before now, right?  Just like Breast Cancer Awareness month - we have an O Awareness Day!  Sometimes I wish the FB Support Group would open to the public, so you could see all the beautiful little "O warriors".  It is truly amazing to see such little people fighting a big fight!  But I totally understand privacy in these cases.  And if you don't realize the extent of some omphaloceles, just google it!  Merritt is extremely lucky in that her lungs have cooperated through this process!  The O colors are black and white (i.e. breast cancer is pink) so Merritt is sporting her B/W colors today!



I've been planning and thinking about doing this post for awhile now.  Then after Bible Study yesterday, it sort of pushed itself to the front of my mind.  I might say some offensive things here, but I am going to be brutally honest in my thought process.  It was all part of learning to trust and totally depend on God to get me through it.  I think those horrible thoughts I had at one point served as a choice:  I could either go that direction or I could turn my eyes on Jesus and trust His plan.  

........(shew - here goes!)

Most of you know the physical journey Merritt and I went through (you can track it through Merritt's Story on the blog).  One year ago this month, we got the devastating news that our baby's organs were growing on the outside of its body.  I clearly remember saying, "a what?"  after she gave us the omphalocele diagnosis.  And yes, I used the word "IT".  For a moment, I thought I had breeded some monster.  A deformity.   It was the sick one.  It was going to be labeled its entire life as 'something that went wrong'.  I saw horrible pictures online and that's all I had to go by.   Everything was so unknown in utero - and I had no patience to wait 9 months to see what this O was all about.  Then they offered to terminate the pregnancy.  I will admit, my mind went there.  It would be SO easy to not put yourself through something like that.  And if I didn't abort, there was little chance of it surviving anyway.  I didn't pray for a miscarriage, but I definitely had days where I wouldn't have minded if I did.  There I said it.  Let me clarify:  I wanted to put it out of it's misery.  I didn't want her to suffer.  I didn't want me to suffer.  I wanted the pain and hurt to go away (for both of us) so bad, that I found peace knowing she would be in better hands with Jesus.  Then I wondered how I would think of myself 20 years from now. How could I live with myself?  I'm not a terrible person, but I felt like it. Will she read this one day and hate me for it?  Probably.  But I'm only saying it to tell you that is what I had to overcome!  I felt like I was not only battling medical issues, but demons in my head!  Obviously I didn't entertain those ideas for long... just passing seconds here and there.  I tried to stay sane. 

But little did I know that Jesus already had us in His hands.  Before I got pregnant with Merritt, I lived in a bubble.  A very nice bubble.  Ignorance is bliss.  I went to church and I prayed when I wanted to.  Then He pushed me against the wall.  I woke up every day for 9 months praying harder than I ever have.  Like they say in the Bible, "they prayed constantly"  (Acts 1:14).  I prayed constantly.  Most of those tear-filled days are so cloudy, I can barely remember them.  I prayed when I woke up, I prayed through a crying session, I prayed and literally screamed in the shower for God to fix it, I prayed in the car, I prayed ALL day, I even woke up in the middle of the night to pray!  I begged and pleaded with God.  Asked Him to "show me a sign - a blinking neon sign - that He was with me, because I felt completely alone."  

I remember walking past a few ladies in a store and I overheard "....there....she...is..........baby has something wrong with it...."  I even blamed myself at times...thinking I had done something to cause this.  I was fighting guilt too. 

Time.  Time went by s.l.o.w.l.y.... where looking back, God was working on my heart during that time.  Bible study this week really spoke to me.  In Acts, Jesus tells his disciples "to wait"  and "It is not for you to know times or epochs which the Father has fixed..."  A few unexplainable things happened that I never posted about because you would think I was legally insane for sure.  We found out IT was a girl.  A feisty one.  Remember the Merritt Award?   Every ultrasound gave me another shred of hope... and another answered prayer.  Suddenly I began to pray for "His will".  Good or bad, I didn't care, I just wanted God's plan.  I began to ask God, "to not take the omphalocele away, but just put His hand on it and perhaps keep it from getting any bigger." "Give her the best fighting chance she can have."  Her heart became an issue, and we started having extra cardiology appointments.  I didn't know going into one particular appointment that it was a do or die situation  -->  it came down to "if this number is [this] it means bad and if this number is [this] it means good."  Merritt was being extremely difficult on the ultrasound, and the doctor was having a very hard time getting the measurement she needed.  I think almost 30 minutes went by and we still couldn't see this particular part of the heart.  My heart sunk for the 100th time and it seemed like a dark cloud was forming over my head. Trying to pass the time, I laid on the table and said a silent prayer once again, "God, I need you with me, I need you to hold my hand, I need you to tell me its gonna be okay." (This prayer was becoming repetitive).   Then this is where I went nuts.  Like certifiable crazy.  I HEARD A VOICE IN MY HEAD.  Yep - I was hearing voices.  Call me crazy.  It was not my own voice.  And it certainly wasn't what I would have told myself in that situation because I was scared out of my mind.  (obviously).  I heard a masculine voice tell me, "It's going to be okay"...  and in that I understood it to mean - right then.  Maybe not tomorrow, maybe not months from now, but right this second in this appointment - it was going to be okay.  This particular heart test.  And within a SECOND after hearing that, Merritt turned and gave us the picture/measurement we needed - and it was okay!  It was good!  The doctor got excited and I was happy...  but I already knew it was good.  And at first I didn't even hear what the doctor had said, because my attention was on THIS VOICE I heard!  It was almost as if God told Merritt to turn when she did - because He was waiting on me to PRAY for this situation.  He was waiting to see if I was going to lean on Him before giving any answers! Timing was incredible.  I prayed - He spoke - and she turned. 

I realized God WAS WITH ME.  He was with Merritt too!  He lit up my sky - in a crazy way!  No, He wasn't going to fix the problem.  or take it away.  But He was with me and that's all I needed.  

After that I had the peace that didn't make sense.  Yes, I still had anxiety, frustration, depression, anger, jealousy, etc...but overall I knew that no matter what, all that matters is my NEW relationship with God.   We were on speaking terms again.  He kicked my feet out from under me and then pushed me into a direction I didn't necessarily want to go.  The only thoughts I had were that this world doesn't matter.  We could all die today and I'm happy knowing we will be with the Lord!  My grandfather died around that time.  And I didn't even cry at the funeral - because I was so happy that death is a good thing! He is in Heaven not fighting any battles here! I was screaming on the inside "death, where is your sting?!?!" lol!  

I wouldn't wish this medical journey on anyone.  But it has brought me closer to Him.  I truly lived each day on faith.  Faith in God that His plan was unfolding.  

And to clarify again - I can't imagine NOT bringing this sweet face into this world even with her O.... Lord knows I've got baggage.  None of us are perfect - physically or mentally.  Yes, I feel guilty for thinking the things I thought - but I think that was Satan trying to pull me away from God's plan.  He tried.  But he didn't win.  

From the bottom of my heart, thank you for all the prayers this past year!  I have seen miracle after miracle performed - and now I spend ALL my time thanking God in prayer.  Thanking Him for His mercy, His presence, His answered prayers, but most of all His LOVE.  God is love.  He loves us so much that He will discipline us like we do our own children to make us better.  I think I speak for my entire family that we are better for it.  Praise and Glory to God! Again in Acts, the apostles were told to witness what they had seen.  And I got to thinking....why hadn't I witnessed what I had seen?  I have seen how big our God is.  Merritt's omphalocele didn't appear to grow any more/bigger during the rest of the pregnancy, and it was smaller than we anticipated at birth.  He is the ultimate Healer!  After we expected to be in the NICU for several months, she stayed 21 days.  Her O was fixed for the most part, and 2 of 3 holes in her heart have healed on their own.  

We are blessed! After re-reading this before posting, I just want to make it clear - that I'm not saying "pray - and God will heal you."  Maybe he won't.  Sometimes I worry what I would feel if things had gone differently.  God didn't have to answer our prayers in our favor.  And thats a constant trigger for me to always be thankful.  I can't dwell on what ifs - because this is what I know.  I know that I know.  

"But having the same spirit of faith, according to what is written, "I believed, therefore I spoke" we also believe and therefore speak, knowing that He who raised up the Lord Jesus will also raise us up with Jesus, and will present us with you.  For all things are for your sakes that grace, having spread through the many, may cause thanksgiving to abound to the glory of God.  Therefore we do not lose heart, but though our outer man is decaying, yet our inner man is being renewed day by day."   2Cor 4:13-16.


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Monday, January 28, 2013

Monkey See NOT Monkey Do

I'll let the pictures do the talking.   I'm learning that Mati Claire and Mattox are VERY different!


I have a headache from all his (and Merritt's) screaming.  I can imagine what the hygienist wanted to say but didn't.  Bless her.  He did, however, take home some notes:


And I forgot to post this pic that was for the previous post.  Here's a pic of the new room from the backyard:

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Thursday, January 24, 2013

Good Days

Granny, get your gun!!!

Mati Claire's school celebrated the 100th day of school today, by dressing up like "old" people.  Alot of schools also celebrate by wearing something with 100 items.  She had an after school project this week of beading 100 pearl beads on fishing line to make her pearl necklace.  I happened to have gray hairspray leftover from Christmas  (Aunt Bethany costume).  I bought "granny" glasses from Party City for $3.  Gigi has been at my grandmother's house since Christmas, and she found this shawl (awesome) and fabric that is truly 100 years old (that happens to be pink and purple)!  So she made her a skirt.  And we are SO lucky to have a Nana that owns a medical supply store...she LURVES her walker!   Awesome!!!! And her hair is in a giant bun in the back, but you can't see it.


Hil.ar.i.ous.   Plus she totally plays up the part of hunching over too.  Check out those eyebrows. Wowzers....i can't wait til she's old enough to get waxes with me.  ;)


MATTOX IS POTTY-TRAINED!!!  For the most part.   He wears big-boy underwear during the day and hardly any accidents (all of which have been in the bathroom), and he wears a diaper at night.  I can handle that!!!!  Hallelujah!  So mark it down:  Wednesday, January 16th.  A light came on.


And more things going around my house lately.
Despite the appearance, this is a GOOD thing!  We are adding another room in previous attic space. Its inconvenient to lose our garage in the dead of winter for awhile, but I keep focusing on the positive - another room for Gigi and Poppy to stay when they come to visit.  And the kids won't ever have to share a room.



Now...who wants to clean this up before Mattox's birthday party next month??? ;)

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Thursday, January 17, 2013

Many Firsts

Many firsts around here!  

1)  Merritt had her first taste of baby cereal!  I know she's 6 months - but our pediatrician "Dr. Whistle" (that's what MC calls him) says she's really more like a 4 1/2 month old.  And for me to treat her somewhere in the middle.  She has been wanting to nurse every 2 hours lately - and I'm not sure if its a growth spurt - or if she's just starving.  So I started slowly the first week, and I really started pushing more this week.  BUT she has been screaming and REALLY fussy the past few days... so I'm backing down a little.  Back to just once a day.  Boring stuff I know, but just sharing.  And I dipped the spoon in squash to see her reaction - and she got choked.  So I'll wait awhile to go back to food. 
Loved the squash. until the 2nd bite.
"I'm a little tired of this...think I'll just take me a nap..."  
 2)  Merritt's first snow day!  Well - more like her first MINUTE of snow.  As soon as the wind started blowing - she started SCREAMING.  Yeah - it lasted long enough for me to take a few pics... maybe 2 minutes and we were back inside.  ha!  


3)  First snow of 2013.  Here's a pic of the other 2 that loved it.  For those of you that don't live in Mississippi --- this is a BIG deal!  We don't get snow very often. Sometimes years without a snow. But this was just enough to play in! (and yes, I changed MC's boots when we got in the car to ones that actually match her outfit.) 

4)  Mattox went potty!!!!  He went so many times yesterday I lost count.  Maybe we're onto something here...  I LITERALLY spent over 3 hours straight in the bathroom with him yesterday.  


5) Merritt discovered her feet/toes!  This one caught me off guard.  And I actually got a little upset.  These are things that no one prepares you for.... she can't reach them = her belly gets in the way.  And I'm not sure if its uncomfortable for her - but she wouldn't bend her knees.  She tried DESPERATELY to put them in her mouth, but I couldn't decide if I should cry, laugh, or just be proud that she's trying.  She had a good time playing regardless. That's all that counts.  :)  
She also rolled onto her side from her back....baby steps!


Here's to many more first this year!!! 
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Wednesday, January 9, 2013

6 months!

Wow how time flies!  Merritt is 6 months old today!  6 months is my favorite age for babies, although she's really more like a 3 month old.  Wears 0-3/3mo clothes, size 1 diapers.  She weighs 10 lbs 14 oz this morning, which is up - but not as much as it probably should be because she's been sick the whole month of December and she's playing catch up.  She eats every 2 hours still most of the time.  Last night she was nice to me and went long... a whole 4 hours.  (Just to clarify - she wakes, eats, and usually goes right back to sleep for another 4 hours, etc.)

I'm planning her birthday party as I type and I won't lie.. it's huge.  I debated on family only or everyone - but I can't not invite the people that have prayed for her for so long.  That wouldn't be right.  The people that came to visit us, bring us food, and supported us in so many ways... So even if you don't get a formal invitation, you can still come!!! It is a birthday that I sometimes thought would never happen.  And I'm so excited that she APPEARS to be in the clear - that we are going to have a big celebration in July.

I say 'appear', because I read about the O babies that have been "fine" and home for months, then all of a sudden, they stop going to the bathroom and they discover blockages or something GI related.  An 18 month old is back in the hospital in critical care.  I'm not sure if we're ever really in the clear.  There are not many O adults in the support group - but they give us their history on growing up.  I only know of 2 that have had successful pregnancies.  Most were considered "small" until their 20's and most have GI issues.  

Anyway - that was all before modern medicine and every baby is different.  I try not to dwell on the unknown and just focus on how great she's doing now!!!!





She is becoming very funny! Loves to laugh and watch big bro and sis!  She reminds me of Mattox in how she acts (but looks like MC I know).  She likes to be held alot (like Mattox) and has the separation anxiety thing going on when she doesn't see Mommy around.  A BIG momma's girl.  

Happy half - birthday, Mitt! 


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Monday, January 7, 2013

NewBeginnings

Hate to start this year's blogging with somewhat sad discussion, but its what is current here.

This is the second year in a row I've lost someone I knew on Jan. 2nd.  We lost a girl in our Sunday School class this year suddenly to a rare illness.  She was 23 and only been married about 3 years.  I didn't know her that well, but she has still struck a chord in everyone's heart.  You never know when your time is up.  2 years in a row I have been reminded to live each new year as it was your last.  What would I do if I knew my time was coming? And it is.

So I could't move on with the future until I've cleaned up my past.  Granted there are some messes that leave permanent stains, but I thought I'd start off by apologizing to a few people I knew I had wronged.  2 so far... and I've gotten ignored twice.   Maybe my apologies aren't good enough but I'm learning that no response is behind door #3.  (I was expecting either a "good" or "bad" response but "nothing" has caught me off guard.)  I've done what was laid on my heart - and thats all I know to do.  And I'm going to cover myself here and give a mass public apology:  if I have wronged you, I sincerely did not mean to hurt you.  I was probably being selfish in some way and I am striving to do better.  I am sorry and hope you can forgive me.  And I know that apologies are between me and that person and God... but just wanted to share what's on my mind...maybe they'll get mad at me for that and I'll apologize again. lol

New year means new beginnings.  Why am I holding onto so many material things in my attic?  So almost everything in my attic is going up for sale... and what isn't sold is going to Goodwill.  You can't take material things with you to Heaven.

...

Looking forward to this year.  We are planning some important family functions, vacations, and Merritt's next surgery.  Hoping for her to grow as much as she can physically... and me spiritually.  Looking forward to our new normal: new school routines, start back exercising, and new house projects.  Looking forward to losing some weight, the end of breastfeeding Merritt (one day this year), and best of all losing some diapers!!! (surely Mattox will be potty trained by the end of  this year, right?)

So Happy New Year!

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