Happy 8 Weeks Sweet Baby Jay!

Hurdle #21

The Power of Prayer...

I'm so thankful that I am saved by grace.  Where would I be without the blood of Jesus that was shed so many years ago to cover me.  When Jesus died it opened up the airways of communication to the Father.  If Jesus wouldn't have put me as a priority in His life through such love and grace way back then, I wouldn't have the power of prayer today. One thing that has come out of this season that we are in the midst of is prayer.  We have always taught our kids to pray about any and everything but recently we decided to begin family prayer on Sunday nights in order to prepare us for our week.  It's a wonderful thing to hear Raghan's prayer shaping from a sentence prayer to a deep heartfelt prayer as she prays for each member of our family especially Baby Jay.  We know in our hearts that Jay is still here and doing well ONLY because of the power of prayer and God's goodness.  We're thankful to everyone in our lives, those we know and those we don't that have taken their time and heart to send prayers for Baby Jay.  No one will ever know just how grateful we really are.  It's almost overwhelming to even think about.  Once again we see God's handprint all over our lives and we give Him all of the Glory.  Coming boldly before His throne making our specific requests known to God.  We seek Him, we trust Him, we believe Him, we love Him.  He keeps us, He carries us, He covers us, He loves us.  God is good.

Still blessed...

Today has been another great day with Baby Jay.  We started off by sleeping in until 10 am (since we were up several times during the night) and this was one wonderful thing.  Jay had a great first week at daycare and we are definitely looking forward to another great week.  She's even taken a couple of 4 oz bottles this weekend.  She's starting to pop up at 6 am each morning so I guess we're beginning to get on a schedule.  She's getting stronger and stronger and tonight we noticed her trying to roll over.  Still falling in love with her more and more everyday.  Asking God to continue to bless and provide healing for her from head to toe everyday and we receive His healing on her behalf.  We are so grateful and our hearts are so full.  We will continue to speak life over her and whisper prayers of strength and healing in her sweet little ears every night.  Asking God to bless us and equip us to be the parents that He designed us to be and not the parents that we choose to be.  Everything in His plan, everything in His time.  Loving life, loving her, and loving God.  Covered by His grace.  God is good.

All about Him...

Thanking God that it's not about us but all about Him.  Nothing is about us but it's all about Him.  Life is not about us, it's all about Him.  Praising God in the midst of.  God is good.

Time that stands still...

What can I say but another blessed day.  Baby Jay had a great day at daycare and stayed awake for 2 whole hours when I came home.  We went walking this evening and time almost stood still for me.  Raghan on her bike, Braylan in the wagon and Jay in the stroller in the midst of God's wonderful creation.  Once again I'm reminded that He is Creator of ALL.  It was a moment of time that I wish I could hang onto forever.  I couldn't have asked for the moment to be any better.  Thankful because what a Mighty God I serve.  Thankful for the Spirit that lives in me and Thankful for the blood shed out of love.  I've been envisioning Jay crawl, walk and play.  I'm praying that one day she'll be a thinker, a writer, a teacher for where there is no vision the people perish.  Thankful that I am able to keep a vision.  Still looking deep into her eyes as if looking into her soul.  What life I see.  What peace I see.  What love I see.  I know deep down in my soul that she has already been touched by God Almighty Himself.  Thankful that He allows her to rest in the palm of His hand.  God is love and God is good.

Grateful for the Simple Pleasures...

Gazing into eyes...

Patting your little bottom...

Grasping little fingers...

Sitting a while and rockin'...

Brushing small curls...

Kissing soft cheeks...

Taking in your smell while

Rubbing little feet...

Embracing simple pleasures, I'm blessed beyond measure

In His arms you shall remain, we're asking these blessings in Jesus name...

So Grateful... it's just that simple.

God is good.

You're Everything to me...I bow before the KING!

Another blessed day.  Everyone is sound asleep except me and Baby Jay and I get her all to myself.  She's patiently sitting here allowing me to pray over her and sing to her.  She even has a little bit to say to me every once in a while.  Blessed to have this moment.  Milestones said she had a better day than she did yesterday because she ate more.  Thankful to see God's handprint ALL over our lives.  My cup is running over with His favor and I give Him praise for it all.  The song that has been on my heart from sunrise this morning is by Ty Tribbett called Everything to me, "Everything, you're everything to me, everything, you're everything to me, life and breath, you're everything to me, you're my peace, you're everything to me, joy and sorrow, you're everything to me, hope for tomorrow, MASTER, SAVIOR, RULER, REDEEMER, SHELTER, PROVIDER, DELIVERER, HEALER, FATHER, FATHER, FATHER, SAVIOR, JESUS, JESUS, JESUS, JESUS, JESUS, JESUS... I bow before the KING, I bow before the KING, I bow before the KING, I bow before the KING..."  This song takes my breath away because I am so in awe of God right now I'm like a little kid in a candy store and I can't stop grinning from ear to ear.   My heart is full, my mind is focused and my soul rejoices. Who wouldn't serve a God like this??  Seeking ye first the kingdom of God as I continue to delight myself in the Lord.  I will trust Him and lean not on my own understanding as I continue to acknowledge Him so that He can continue to direct my paths. My God, My Father, I bow before the King.  God is good!

Happy 7 Weeks Baby Jay!

Hurdle #20
Today Jay is 7 weeks old and that is definitely something to give a praise report for.  God continues to blow me away everyday.  She's doing really good and had a wonderful first day at daycare.  I couldn't wait to see her and of course she was asleep when I finally did.  She was fussy most of last night because she was so hungry and woke up every 2 hours to eat.  Don't get me wrong I am not complaining!  God is truly blessing us everyday and I don't take one minute of it for granted.  I am so thankful that we get to embrace her and love on her.  I'm still coming before the throne and making specific requests to God to cover Baby Jay from head to toe.  We all are.  I can't believe that these 7 weeks have flown by so fast!  They've been the best 7 weeks of my life.  I will continue to stand firm on His word and believe and receive His promises.  I'm thankful that He gives me the authority to trample over everything that Satan sends our way.  We don't receive anything from him but we reject and bind it all.  He wants me to be down and wants me to think and focus on the worst and he always wants me to minimize my God but he must realize that my God will always be BIGGER than him and he'll never come close to comparing to Him.  Satan will never take my joy.  My joy is permanent and cannot be erased, stolen, broken, damaged, picked apart, or DESTROYED!  I choose to focus on the positive and to speak life.  My God, My God.  Praising Him in the midst of, serving Him in spite of and loving Him because of, in Jesus name.  God is good.

Baby Jay's first day of daycare!

Love...

I won't be overwhelmed...

What a marvelous day.  Today we got out and went to church for the first time since Baby Jay entered the world and it was great.  Michael had to attend our church because he does our Sight and Sound ministry. My friend Brandy and I, along with the kids visited New Life Church here in Conway and it was a wonderful service in which Jay slept through the whole service.    One of NLC praise songs really ministered to me, it's called God I look to you and it says "God I look to You, I won't be overwhelmed, Give me vision to see things like You do, God I look to You, You're where my help comes from, Give me wisdom, You know just what to do, I will love You Lord my strength, And I will love you Lord my shield, And I will love You Lord my rock, Forever all my days I will love you God, Hallelujah our God reigns, Hallelujah our God reigns, Hallelujah our God reigns, Forever all my days Hallelujah."  During the service a lady sitting a few chairs down from Baby Jay came to say hi during the welcome service and took a peek at Baby Jay in her carseat.  She asked how old she was and I told her six weeks not knowing what she was thinking while observing her cleft lip.  After the service was over she came back over and said, "I'm sorry I didn't introduce myself to you, my name is Gina and I to have a child with a disability.  My son was born deaf and he's 34 years old now.  It introduced me to a different world and I had to learn a lot of sign language.  Currently he and his wife along with my two grandchildren are on a mission taking songs and messages and putting them into videos by sign language for other deaf people."  She said "God wanted me to let you know that He's going to use you and your baby to do His work and just like me you're going to have to go through some things, but He's going to use you both."  It gave me chills.  Here this lady was that didn't know a thing about me or Baby Jay, but yet she allowed God to use her to bless me.  God knew just what I needed to hear and I praise His name for it.  Bowing before the King.  God is good.

Still expecting great things...

Although we've had a pretty good day, Baby Jay has had her share of apnea tonight.  You can tell she's trying to breathe because her body is moving but she's not making that connection to exchange that breath.  We've put her back on the oxygen and it's amazing what it does to her.  She wakes up instantly and today she started making noises as if she wanted to talk :).  We will continue to go to the Father, boldly before His throne asking specifically that He continues to breathe life into her.  With Him we can't go wrong.  Lord please let your strength be made perfect in my weakness.  She's beginning to take 3 oz bottles which we're ecstatic about.  I can definitely tell that she's gaining weight because the newborn pampers that she started off wearing in the hospital are now beginning to fit snug.  She's blessing us everyday and we're loving her everyday.  Monday is coming sooner than I want it to.  Praising God that my valley isn't dark but full of light because Jesus is walking with me through it and His light shines so bright.  We are more than conquerors.  We will continue to take it day by day and allow God to work in Baby Jay's life day by day.  We will continue to expect great things and stand firm on His word for it won't return void. Praying that God touches Baby Jay from head to toe and make her well and whole. All things are possible for he that believes.  Lord I believe.  God is good.

Nurse Charlie and Baby Jay

He is my potter...

Today's been a pretty good day although Baby Jay had quite a bit of apnea.  Charlie seems to think it's because one of her shots gave her diarrhea yesterday so she was very fussy which probably wore her little body out.  We gave her some oxygen and she was up like lightening she just needed a little support.  Speaking of Charlie today was our last day with her.  Hospice has reassigned her to another area.  She's been so much support for me over these last six weeks.  She's been such a great part of our lives it just makes me sad to lose her.  I told Michael that I thought I was going to cry today when she walked out the door for the last time.  She was definitely a blessing for us and just what we needed exactly when we need it and we are thankful to God for that.  Today was my last scheduled day at home away from work because on Monday I will be back into full swing.  I'll cherish this time that I've had with my family forever.  I pray that God takes care of my angel baby.  I'm embracing the depths of our lives, we have them by the grace of God.  I will continue to speak great things for Baby Jay into the atmosphere.  We are the clay, He is the potter.  We are the works of His hand.  Thanking God for being Omniscient.  He knows my heart, He knows my thoughts, He knows my feelings.  He is all knowing and all powerful and that's alright with me.  God is good.

His Spirit...

Constantly in prayer that God continues to surround our family with His Spirit.  I'm asking Him to rain on Baby Jay with His love, grace, and mercy and that He allows her the days, months and years to do the work that He created only her to do for Him.  Praising God in the midst of for His mercy endureth forever.  Thanking Him for restoring my soul for when I am weak He is strong.  The song on my heart this morning is "Rain on Us" by Earnest Pugh, it says, "Let your glory fill this place, Let your all-consuming fire, fill this tabernacle, Purify our hearts, Surround us in this place, Want you to breathe new life within us, Send a refreshing glory, Purify our hearts.  Rain on us, Breathe on us, Shower down, Shower down, Send your Spirit, Lord."  Touching the hem of His garment.  God is good.

Chosen for a reason...

Baby Jay took her first shots like a pro yesterday!  She cried for about 5 seconds and that was it.  She slept most of the day after her shots but I don't think they bothered her.  She weighs 5.5 lbs!  It's still not her birth weight but at least it's coming up and moving into the right direction.  The clinic also called when I got home and the doctor wants to start Jay on RSV shots in October just as a precaution since she's going to be starting daycare.  I'm so glad that they've finally given her some value and they're finally thinking about her future that I feel confident that she will have.  Today we finished her enrollment with Milestones.  I feel really good about her starting on Monday, plus there's a lady from our church that volunteers in her room.  I'm going to miss her and it will definitely be hard to leave her in someone else's comfort.  I'm so use to having her in the comfort of our home so this will be totally different but it will be a hurdle that I know we'll get over.  We've made the big decision to remove her DNR that we signed when she was born.  God has shown us His tremendous power day by day so we feel that it is no longer needed and now we know that she is definitely here for His purpose.  We do not want to get in His way as we often do.  Our purpose on this earth is to bring Him Glory and it is our prayer that we don't get sidetracked by life and miss that purpose.  To hear Nurse Charlie make that call to the doctor to remove the DNR was a huge relief and felt so wonderful. We have great peace about it so we know in our hearts that it was the right thing to do.  We are continuing to speak great things over Baby Jay.  It's been a wonderful week with Raghan starting school and tying up loose ends.  Braylan will start preschool next week.  We are expecting awesome and powerful things to happen in the days and weeks ahead with all of our family.  I know His Glory will definitely come forth!  We trust Him, He chose us.  We love Him, He loves us.  God is good.

We just got to the doctor's office for Baby Jay's 6 week shots and we are claiming great things for her weight check this morning! God is good.

Happy 6 Weeks Baby Jay!

Hurdle #19
Happy 6 Weeks to my sweet Baby Jay laying beside me taking sweet breaths of life!  The Lord just keeps showing up and showing out in our lives and we are beyond thankful!  6 whole weeks and we are claiming even more life for this sweet child.  Totally thankful that when the doctors give up and say there is nothing that can be done, My God, My God can do more.  We will continue to stand firm on HIS Word and we know that HIS Word will Never return void.  In John 14, Jesus tells us that He that believes will do greater works because He goes to the Father.  I'm excited that we are bathed daily by the presence of His Spirit.  Praise God, because of the blood shed so long ago by none other Jesus Christ that is still so fresh today, I have "Kingdom Authority"!   The song on my heart most days, "Where would I be, you only know, so glad you see through eyes of love".   James 5:16 tells me that the prayers of the righteous availeth much.  I bind the actions of Satan and I open the door to the annointing of God. What Satan meant for bad God meant for good.  The battle is the Lord's and God reigns forever.  We will continue to speak life over sweet Baby Jay.  Where the Spirit of the Lord is, there is Liberty!  We claim VICTORY over what is already done for by His stripes, once again by HIS stripes Baby Jay is healed.  Baby Jay is a work in progress and I fully trust God to breathe throughout her wonderfully and fearfully made body consistently.  I trust Him too much to doubt Him.  Yes I am a Believer!  God is good!

I wish I could...

Sitting and listening to Baby Jay breathing tonight.  So glad to hear her breathing it brings a sense of calmness over me.  I just don't understand why Trisomy babies all of a sudden forget to breathe even after much practice.  I wish I could just breathe for her and oftentimes I find myself taking a deep breath when she fails to.  She's such a great part of our family now I just can't imagine not having her.  I will continue to speak life over her until God directs me differently.  I'm so thankful that He knows what He's doing.  I'm so thankful that He's keeping me.  I'm so thankful that He's keeping her.  God is good.

Stepping out...

Baby Jay had a better day today than yesterday with her breathing.  Yesterday she seemed to stop more often than before.  However she has a better appetite which we're thankful for.  Just by looking at her it seems that she's gaining weight.  She's scheduled for her shots on Tuesday so we'll get another weight check.  I have one more week at home and back to work I go.  I'm going to miss her so much.  As a parent you feel as though no one can love on and take care of your baby better than you can. I have truly enjoyed my time with her this summer. Tonight Mike and I studied the Book of Ruth since he has to do Sunday School review in the morning.  I've always admired Ruth because of her commitment to God and her ability to step out on faith.  I choose to be like Ruth and step out on faith.  I trust God for what He has planned for our lives.  I'm trusting Him to continue to bless and surround me with His perfect peace.  Just as Ruth had great things planned for her future I believe that God has great things planned for ours.  I know He loves me, I know He loves Baby Jay, and we love Him.  He's a good God.  God is love.  God is good.

No more floods...

Today has definitely been a blessed day words can't even describe.  First of all Baby Jay is still with us and doing great!  Just as I was praying this morning for God to make a way for Braylan to get into preschool (in which he's been on the waiting list for about 3 months), I called to check on his spot and the office lady tells me that she'd left me a message on my work voicemail yesterday, letting me know that his spot would be ready on the 22nd (the day that I am returning to work).  Next as I was making my way out of the house to get Raghan registered for gymnastics this year and to go and pay my deposit for Bray's preschool, by the grace of God I decided to check the mailbox before I left only to find an unexpected check for a doctor bill that apparently we overpaid.  The great thing about it is that the check was enough to cover everything that I needed to pay for today with money left over. As Raghan and I begin making our errand rounds we stopped by the hospital only to find that Jan, my coworker had a pair of black sandals for Raghan (among other things).  I've been looking for some black sandals for Raghan's first day of school outfit that didn't cost an arm and a leg.  Next my mother graced us with her presence to babysit Jay and Bray so that the Mike, Raghan and I could attend Raghan's school orientation.  This was both Mike and my first time out of the house together without Baby Jay.  We have a great feeling about Raghan's teacher and also feel that this is going to be a wonderful year.  To top things off God blessed us with a beautiful rainbow this evening to complete our day.  Through the rainbow I felt that God spoke to my heart. Once again throughout the day he completely blessed me letting me know that He got this.  Everything that I'm going through, He's there for me and there will be nothing that comes my way that I'll have to worry about.  The book of Genesis tells us that after the flood God sent a rainbow.  The rainbow was a covenant between God and the earth that He would never flood the earth again.  It lets me know in my life today that God will never flood my life with more than I can bear.  As a matter of fact He's just waiting to bless me in more ways than I can imagine when I least expect it.  Why?  Because He is who He is.  He's AWESOME, He's MAGNIFICENT, He's WONDERFUL, He's GLORIOUS, He's God and God is good!

Because of who you are...

The song of worship on my heart this morning, "Because of who you are I give you glory, because of who you are I give you praise.  Because of who you are I will lift my voice and say Lord I worship you because of who you are.  Jehovah Jireh, my Provider, Jehovah Nissi, Lord you reign in victory, Jehovah Shalom, my Prince of Peace.  And I worship you because of who you are."  Despite of everything I will continue to worship Him.  Because of who He is, Jaylan is who she is.  Blessed.  God is good.

Happy 5 Weeks Baby Jay!

Hurdle #18
Baby Jay has made it to 5 weeks and still doing good.  We did receive our retest results and they were the same but I still fully believe that God holds the final answer.  I refuse to be down about them but I'm still asking Him to prepare me for His will.  I don't know how He'll do it but some things aren't meant for us to know and that's where trust comes in.  He's been so good to me I know He won't fail me.  Results are only results but God Almighty is God Almighty.  So powerful we'll never be able to wrap our minds around it.  I will continue to praise Him in spite of.  Loving Baby Jay to the fullest.  Loving MY God Almighty with all my heart and soul as He asks me too.  God is good.

The things I see...

Baby Jay is doing great as always Praise God.  I'm thankful that we hadn't needed the oxygen machine for several days now, what a great blessing!  Sometimes when she's awake she stares so deep into my eyes and I stare so deep into her eyes.  It feels like she can see my soul and I can see her soul.  There's so much character in her soul.  So much life.  I see lots of strength and so much more that I just can't put my finger on but I trust God to show me in due time all that there is to know about her.  It's very much a sense of warmth that overtakes me.  Something that I just don't know if I can live without.  When I sing and talk about Jesus to her it seems as if she already knows Him but wants to know more.  I'm thankful to God for our connection and bond as any parent would be.  I just want to be everything to her that God wants me to be.  I want to hurt for her, I want to breathe for her and while I know I can't physically do those things I do know that I can love and embrace her to no end.  My prayer today is that she will one day know just how much I love her and will love me back.  Trusting the King who's ruler of all.  God is good.

Thankful yet again...

Baby Jay went for shots today only to find out she needs to be six weeks and they misscheduled her.  Now we have to go back in a couple of weeks.  Today I did a little back to school shopping and found myself missing Baby Jay quite a bit.  I know it'll be hard when I go back to work because I'm so used to being with her all the time.  She's just so sweet you just don't want to leave her.  I'm asking God to make His strength perfect in my weakness.  I'm thankful today.  Thankful for another day of being with those that I love most.  I've learned to enjoy all of the extra quality time that I've had with my family.  I'm claiming great things for Baby Jay's life while still trusting God and standing on His word. I'm praying that He gives me everything I need to get to the place He has in His plans for me to be.  God is good.

Happy One Month Birthday Baby Jay! NO rocks for me...

Hurdle #17
Happy One Month Birthday Baby Jay!  31 whole days.   I'm so proud of her.  She slept most of the day.  I imagine yesterday's appointment wore her out because she also slept all night. I'm still asking God to cover this beautiful child that He so wonderfully and fearfully made from head to toe.   What a blessed day to have this baby girl.  I'm praying that God gives me the endurance to run this race that He has placed before me.  The song on my heart tonight is by Smokie Norful, "I need you now"  It says "Not a second, Or another minute, Not an hour, Or another day, But at this moment with my arms outstretched, I need you to make a way, As you’ve done so many times before, Through a window or an open door, I stretch my hands to you, Come rescue me, I need you right away, I need you now, I need you now, I need you now, I need you now."  I'm so thankful to hold my child tonight and feel her movements and hear her breathe.  I'm standing on tiptoes of expectations.  Today I bless God and I give Him the GLORY! 50 - 80% of Trisomy 13 babies don't make it past their first month IF they make it out of the womb.  I refuse to let the rocks cry out for me.  All Praise be to God!  God is good!

Hospital Pics - 7/4/11

God is able...

Baby Jay had a good doctor's appointment at ACH today.  It went just as I expected.  I have to give it to them they were very warm and welcoming.  We are seeing the Palliative care team which is a team designed for special needs kids.  Today we met with the Medical Director of the team, two nurses, a social worker and a speech pathologist all in an hour and a half.  They answered all of our questions and they drew her blood to retest her for trisomy.  I think she held her breath more than she cried.  The triage nurses kept telling her to stop holding her breath because she was scaring them.  I'm at so much peace when she holds her breath because I know God is going send the next one right on time just as He did in the beginning with Adam and Eve.  God is definitely in the business of breathing the breath of life through the nostrils of man.  He is so good.  They made if very clear that they felt like the first test was accurate but they would retest her because it makes me feel better.  We just want to do all that we as parents should do for our angel baby.  When you're talking about life and death of our child, we don't want to have any regrets saying we should have done this or we should have done that.  They also told me not to worry much about the Pyloric Stenosis.  If she does have it the good thing is that it's something that can fix itself.  Jay's gained 1/2 a pound this last week which puts her at 5 lbs 1 oz, so since she's taking her milk good and gaining weight we can let it fix itself instead of putting her under anesthesia.  They were really good to us and Baby Jay.  Bless the doctors hearts.  Don't get me wrong I'm an advocate for knowledge but having all that knowledge still limits them to a square box.  I'm so thankful that they don't and can't measure up to God.  I'm so thankful that God isn't in that square box.  The doctor kept saying "when she dies".  Wouldn't it be something to walk into a doctor's office and hear the doctor say "when the Lord decides"?  In the end it didn't matter to me because I made it clear that it was in God's hands.  I'm still praying God's will.  I love that little girl, we all do.  God knows my heart and I trust Him to follow His plan for all of us.  Whatever He chooses I trust that He'll prepare us.  I'm focusing on two things, His POWER and living in the NOW.  I'm not worried about what tomorrow holds because He tells me not to.  It'll take about a week to get Jay's test results back so I'm definitely still in full prayer mode as always.  My little firecracker (as Charlie calls her) is fighting on with her little strong self.    God is definitely able, willing, fully capable and full of goodness to do any and all things and that's what He asks us to believe so that's what I choose to believe.  I love and trust my God, they just don't know how much, but God knows my heart.  The song on my heart tonight, is "God is able to do just what he said he would do, He's gonna fullfill every promise to you.  Don't give up on God, cause he won't give up on you, He's able."  Praise God for today. God is good.

Baby Jay ready for her appointment today!

Today's Prayer...

Praying that God Almighty cover us today with His mercy, grace, favor and goodness that He is filled with! God is good!