My sweet baby girl.

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Coming boldly...

Waiting on a UTI test that was suppose to be done in triage but wasn't. Results take 24 - 48 hours. I just sang her to sleep and now they have to wake her. They are keeping her to observe her breathing. So far God has blessed her to breathe wonderfully! Praying boldly before His throne of grace that He continue to allow her to breathe freely and effortless and also that every test that's done comes back with excellent results. Please Lord surround her with your spirit. Cover this room Lord with your presence and comfort for Jay and touch every staff member and grace them with the needed wisdom to care for my sweet precious baby girl. Lord you are in control. Thank you for the neighbors, family and friends that have offered their love and support to us today. We pray that you cover all others that are currently here in ACH and that you comfort and provide the healing that only you can. Thank you Lord for blessing us on this day. Still trusting you, in Jesus name. God is good.

I am so amazed...

I am so amazed.  Today when Jaylan stopped breathing, her heart kept beating.  Her heart, that we were told was not normal and no good.  It kept beating.  We praise you Lord.  You created that heart, you're working that heart.  It's beating.  Thank you Lord that Jaylan is wonderfully and fearfully made in your image by YOU.  I am so amazed.  You are God!  We give you glory Lord.  God is good!

Time stands still...Lord I believe

Hurdle #27

Jay stopped breathing this morning while eating. I tried everything I normally do to get her breathing and nothing would work. I blew in her face, I patted her butt, I squeezed her cheeks, I put her on oxygen. She went limp. Her body melted to a relaxed state right in my arms. That's when I noticed the stillness of our living room and that time had stopped. It literally stood still. As time stopped I screamed for Raghan to get my phone I went out back where Michael was mowing and screamed "I can't get her to breathe!" I called 911. Still no breath. I wasn't ready. As I gave all of my info to the operator Mike did everything he could to get her to breathe. Still no breath. How long can a person live without taking a breath?? I couldn't tell you how long it was because time was still frozen. The operator had me start cpr. I'd never learned it on my own. As I was blowing in her mouth and nose, life happened. She took a breath and both of her arms raised. By the third go around the firemen walked in. As they huddled around her. He looked at me and said "it's ok, her hearts beating 90 to nothing and he smiled at me". They worked on her little sweet body right there in my living room floor. I put my hands on my face and I prayed for peace in the midst of. It's all God's plans. I said Lord, I believe. Next the ambulance came and they decided to load her up and take her to the hospital to get her checked out. Thank you Lord. He's catching my tears and holding her at the same time. So here I am, in the ambulance on my way to ACH. Can one ever be prepared for such a moment in their life?? Maybe not. But God is always prepared. Now all I can think about is, God loves me...God loves me...God loves me...God loves us...God loves her. God is good!

Developmental delays...

 “God didn’t promise days without pain, laughter without sorrow, or sun without rain, but He did promise strength for the day, comfort for the tears, and light for the way. If God brings you to it, He will bring you through it.”  Unknown

Tonight as I was picking up dinner a lady walked in with her one month old baby girl.  Her baby was very unhappy because she was strapped down in her carseat.  She cried and cried and all I could see from where I was standing was her little hands stretched out in the air.  My heart felt sad.  Jay doesn't open and stretch her hands like that. She keeps them clinched all the time.  It's one of her "delays" that Milestones is working on.  Sometimes you just don't realize how hard it is for some to do the simplest things as opening their hands.  I know we have a long road ahead of us but I'll take that long road over no road.  I'm prepared to love her and support her and bear that cross whenever I can grab it from her.  I'll go to the moon for her.  I'll cross the oceans for her.  I'll climb the mountains with her.  I can't imagine all of the patience that God has for us when He's dealing with our "developmental delays".  Thank you God for not giving up on me.  Thank you Lord for going to the moon for me, for crossing the oceans for me.  I praise you Lord for climbing the mountains with me.  Thank you Jesus for bearing my cross for me.  I already love Jay so much, but help me Lord to love her as much as you first loved me.  Yes Lord I trust you to bring me through it because you brought me to it.  God is good.

Today my scripture of the day says:
"Be still and know that I am God:  I will be exalted. Psalm 46:10  It also says, Faith is not an effort, a striving, a ceaseless seeking...but rather a letting go, an abandonment, an abiding rest in God that nothing, not even the soul's shortcomings, can disturb.

Thank you Lord.  You are GOD!  My prayer today is that Baby Jay has a wonderful day of alertness, no aspirations and great breathing.  Bless her Lord with your favor, your grace, your love and keep your Spirit encamped all around her.  Allow her to one day, call you Savior.

The Long Way Around...

I stated earlier that I attended the 2011 Woman Conference at NLC in LR.  As I listened to the words of the song When the oceans rise and thunders roar, I will soar with You above the storm, Father You are king over the flood, I will be still and know You are God, I immediately felt the feeling that I felt when Raghan came to me that night and told me that in her prayers she hoped Baby Jay didn't die.  It was a feeling that God was preparing me for something greater.  It honestly made me nervous and all of a sudden I felt my heart weighing heavy.  I hadn't had this feeling since Raghan came to me.  As the praise team continued to sing the tears began to roll.  I prayed during the rest of the song.  Up until this point my prayer to God is that until He shows me something different I will believe and speak life over Jay.  He's confirmed His power through so many ways to me and no matter what the doctors tell me, I will continue to trust in His power.  As this song continued I began to ask God, "Lord are you preparing me for something to come? Are you trying to show me something different?"  I meditated on the words of the song and opened my heart to receive what I felt God was sending my way and the most amazing thing happened next. 

God answers prayers. 

He spoke so clear to my heart in the message that came immediately after the song, given by a dynamic speaker by the name of Charlotte Gambill.  It was titled "The Long Way Around".  In this message God told me that sometimes He need to use people to help other people.  Instead of immediate blessings, sometimes He takes us the long way around to pick up others along the way, to educate others along the way, to help others along the way.  All He wants to know is am I willing to be used by Him.  Healing is nothing to God.  On earth Jesus showed His power through raising Lazarus from the dead.    On my journey, the long way around, I've learned that when God says, I AM GOD, He really is God.  I've learned that I am God's friend.  I've learned that while I'm in the midst of praying for Life and Healing for my own child, I can also pray and rejoice in the joyous moments for other babies.  I've learned that even during my down days I must not let my tears overtake my Faith.  He's going to come to my rescue, but it will be at His own time.  You see, just as I was receiving that song into my heart, the good God that I love so much, looked down on me and said "Oh she's confused, let me make myself clear" and Oh did He ever make Himself clear, and boy did He do it immediately.  He said "Trust me, I AM GOD.  Do you believe for that Healing, do you believe in My power, do you believe that I AM who I say I AM.  I AM God."  Jesus said that if I believe I will see the Glory of God.  Well Lord I believe.  I believe that you are who you say you are. I believe in your Healing power.  I trust you to continue to manifest yourself to me.  You Are God.  I'm so thankful to serve a God that refuses to let me be confused.  I am thankful that I serve a God that answers prayers.  I am thankful that I serve a God that allows me to be His friend.  I am thankful that I serve a God that shows up at the right time.  I am thankful that I serve a God that loves me the way that He does.  I am thankful that I serve a God that covers us with His blood. 

Where would I be?  You only know. 

So glad you see, through eyes of love,

a hopeless case, an empty place,

if not for grace,

Amazing Grace, how sweet the sound. 

I once was lost, but now I'm found,

a hopeless case, an empty place,

if not for grace.

Yes, I trust you Lord.  Yes Lord I'm willing.  Help me to always remember my purpose for this journey the long way around.  Lord make me strong for your agenda.  Thank you for being my God and taking me on this journey the long way around in this season of my life.  I receive it in my heart, and I believe it in the depths of my soul.  I surrender all.  God is good.

Happy 12 Weeks Baby Jay!

All bathed and ready for bed!

Hurdle #26

My Baby Jay is 12 weeks old today!!  Thank you Lord for your grace that has brought us this far.  Our biggest hurdle to date, 12 weeks ago I couldn't even imagine this day.  You won't find me stressed and depressed.  I'm having the time of my life on this journey.  Your season is what you make it.  Choosing to find the light in all the darkness, choosing to dance in my storm, choosing to soar with Him above the storm, choosing freedom over bondage, choosing to embrace the simple things, choosing peace over worry, choosing to step out in faith, choosing to be the clay for the Potter, choosing to be tested and not defeated, choosing to live in the moment, choosing to speak life, choosing to plead the blood and trust Him completely.  God is good.

I choose to dance...

Jay's still doing quite well Praise God.  She wants to be held all of the time.  She likes the extra security.  She's starting to aspirate more than we want her too when she gets herself worked up.  We're still waiting on the simply thick (thickener) for her milk.  That will help a great deal.  She'll start her RSV shots on October 10th for a little extra protection during RSV season.  She'll have to get a shot once a month for six months.  Still wishing I could bear her cross for her every time she cries.  I just don't want to see her unhappy.  I come boldly before the throne asking God to help her aspirate less and trusting Him to continue to breathe for her.  No matter what storms may continue to come my way I choose to trust God and dance in the storms.  I'm so thankful of these opportunities to dance because as I dance I find myself free.  As I dance, I find grace in the midst of.  As I dance, I find my mind stayed on Him, therefore as I dance, I find the perfect peace that allows me to continue to dance.  Free, with grace, and full of peace.  So I choose to dance.  Thank you Lord for the strength to dance.  God is good.

The King of Glory...

It's been a great Terrific Thursday for Baby Jay.  She's been up most of the evening with me.  I love closing my eyes to rest them only to open them and look down to find her staring at me. Just PRICELESS. 
Psalm 24
The earth is the Lord's and all its fullness.  The world and those who dwell therein...Who is the King of glory? The Lord strong and mighty, The Lord mighty in battle...

Thank you Lord that you are God of ALL.  God of life, God of breath.  It's all yours.  We're all yours.  She's all yours.  Thank you Lord for being the great God that you are and allowing me the privilege to bow boldly before you.  You are the KING of GLORY.  You are Strong and Mighty.  Wow!  I serve a King and a King takes care of His servants.  What love, what security, what a blessing.  Who wouldn't serve a God like this?!  I trust you Lord.  My God, My King, His Glory.  God is good!

His Perfect Knowledge...

Praise God from whom all blessings flow!  Jaylan is finally up to 6 lbs 1 oz I'm so proud of her!  Her ear infection has cleared up pretty nicely and we had her conference today to discuss the results from her assessment at school.  They have decided to focus more specifically on her feeding than anything else.  We are going to have her milk thickened so that she won't aspirate as much and she can get some extra calories.  It should keep her from choking as well.  We met with a speech therapist, physical therapist as well as an occupational therapist.  They all agreed that Jaylan only stops breathing for about 5 seconds at a time instead of 10 to 20 seconds at a time.  I praise God that she's fearfully and wonderfully made.  He formed her most inward parts and He covered her in my womb.  His works are marvelous and that my soul knows very well.  My prayer is that one day her soul will know as well.  Praying that she will grow up and call Him Savior.  Praying that His Spirit surrounds her tiny body.  Thank you Lord for your perfect knowledge of Jaylan.  Thank you for being her Creator and her Healer.  Thank you for your provision as I take the long way around on this journey.  Praising you in the midst of!  God is good!

Happy 11 Weeks Baby Jay! We're Soaring...

Hurdle #25

I attended the 2011 Woman Conference at New Life Church this last weekend and this song hit me hard.  It's ministering to my soul in a way that I didn't know it could on this 77th day of Jaylan's life.

Hide me now
Under Your wings
Cover me
Within Your mighty hand

When the oceans rise and thunders roar
I will soar with You above the storm
Father you are King over the flood
I will be still and know You are God

Find rest my soul
In Christ alone
Know His power
In quietness and trust

When the oceans rise and thunders roar
I will soar with You above the storm
Father You are king over the flood
I will be still and know You are God

He is God and God is good.

I choose light...

In the beginning was the Word and the Word was with God and the Word was God.  He was in the beginning with God.  All things were made through Him, and without Him nothing was made that was made.  In Him was life, and the life was the light of men.  And the light shines in the darkness, and the darkness did not comprehend it.  John 1:1 -5.

Praising God that even in our darkess days His light shines.   In my darkest moments I can glance over at Baby Jay and see His bright light still shining.  The day we received the news, May 2nd, I was surrounded by darkness, although my trust was in God, my world was dark.  Little did I know His light was shining then, I just had to open my eyes.  Darkness can't overcome light but light has already overcome darkness.  In every situation, circumstance, trial, or storm, His light will be shining, I just have to keep my eyes open. Living in the light is a choice.  Living in darkness is also a choice.  The light has been there since the beginning.  As I pray for Jay's healing everyday, I trust God is touching her everyday.  I know everyday won't be a good day and some days will be harder than others, but I will choose to live in His light because I know His work is being done.  No light, no hope, no hope, no future, no future, no life.  I choose light.  I choose life.  I choose Christ.  God is good.

And now I get it....

I finally get it.  Tonight as I watch and listen to Jay, I finally understand as best as I can the love that Jesus has for us.  As I look down on her and see her horrible diaper rash from the medicine she's taking to cure the ear infection she has and I hear the raspy cough that she tries so hard to release, I being her mother, want to bear her pain and discomfort.  I look at her and I hurt for her.  I hurt enough to want to bear her cross for her because I love her so much.  When you have such a love you'll do anything.  For God so loved the world that He gave His only son.  Such love gives me chills.  To look down and see the shape someone is in and want to do whatever it takes to bear it for them is the unconditional love that is lacking in this world.  He lived for us to die for us, He rose for us to live for us.  Help me Lord to show the same love that you've shown for me.  Surround me with your presence, embed me with your Spirit.  Thank you for working all things out for my good for God is good!

Thankful for His plans for her...

Jay's decided that she is bored tonight so we're up finding things to do at 1:00 am.  I've truly enjoyed listening to her breathe really good tonight almost non stop.  Years ago I would have been complaining about getting up in the middle of the night but at this current moment of my life I "choose" to enjoy and embrace this quiet moment with this sweet precious child.  It's really not that bad after all.  Sometimes we dread things instead of choosing to enjoy them.  It's all a choice.  Tonight I think of all kind of things such as what college will Jay decide to go to and what will be the price of college by then.  How sad I'll be to see her move away from home and venture off into new territory.  I often find myself wondering of the plans God has for her.  I know He has an abundant life planned for her and I'm very thankful that He's using her.  It is my prayer to accept those plans.  I know that sometimes God's plans for us don't come in the packages that we would like for them to but I pray that He does help me to accept His plans for her. Grateful for God's plans, presence and power in our lives.  He's an all wise God.  Where would I be, He only knows.  Thank you Lord.  God is good.

Most Worthy...

Thankfully Jay's had a pretty good day.  I just got off the phone with Hospice.  They're making their visits at the day school every Tuesday and Thursday and they won't call me unless there's something wrong so I never look forward to their calls.  I decided to check in with them since I don't get to see them like I use to.  They told me that Jay's doing really good and they all seem to think she's having less apnea.  I'm praising God with open arms.  She said her heart rate is good, her respiratory is good, her color is good and her weight is good although not much it's still good.  She tends to be very alert when they visit and they enjoy loving on her.  Thanking God for His handprints.  Thanking God for her spirit.  Trusting God that every day He's gently touching her, swaddling her, rocking her, blowing breath through her, loving her, healing her.  I pray that He moves me out of His way.  I don't want to be a hindrance to her.  We are so not worthy.  He is definitely MOST worthy.  I wish I could be as good to Him as He is to us.  Bowing before the King, thankful that only goodness flows from Him for I look to the hills which cometh my help.  Strengthen me Oh Lord and cover my mind.  I'm binding and rejecting the fiery darts that Satan has coming towards my family.  He can battle if he wants to but MY God has all power.  We are BATHED in the blood of Jesus.  Lord I continue to give you ALL of the Glory.  God is good!

1 John 5:14-15
This is the confidence we have in approaching God; that if we ask anything according to His will, He hears us.  And if we know that He hears us -whatever we ask- we know that we have what we asked of Him.

Pleading the blood...

Giving thanks to God for His confirmation today.  God is so good!  I had the privilege to meet a lady today that has a son.  Her son has been shot 16 times and one of those times was in the head.  He's still alive.  God reminded me through her that I have to continue to plead the blood over Baby Jay.  He wants me to trust Him.  It's only through His grace that she is still alive.  God can take her whenever He chooses.  When storms come our way it's easy to wonder why they come into our lives, but why not?  After all that Jesus went through to set us free and give us life abundantly.  I look at Jay and know that I am so blessed.  She wasn't "suppose" to be discharged.  She wasn't "suppose" to survive her first month.  God is good!  I know that "they" think it's impossible for her to live much longer but my God, my God who can do the impossible! As Christians, we will face many trials, but I'm thankful for my trials because how can I become closer to God if I'm not tested.  I'm pleading, she's covered.  My heart is overwhelmed, my heart is full.  Tested with a smile on my face!!  I trust you Lord.  God is good!

Happy 10 Weeks Baby Jay!!!

Hurdle #24

Baby Jay looking up - my fav pic!



Grace...

It's been a wonderful weekend.  Grace is God giving us what we don't deserve.  Through grace, God is allowing Jay to live.  Where would I be if not for grace.  So thankful that God's grace is free.  I didn't have to buy it but Jesus was kind enough to buy it for us and set us free.  Jay is free to heal and free to live.  I'm free to envision her tying her shoes and riding her bike.  Jumping on the bed and running down the street.  Talking non stop in the backseat and and turning flips in the front yard.  I'm free to believe that God has great things in store for her.  Things that I can't imagine because His thoughts are higher than my thoughts and His ways are higher than my ways.  All because of grace a gift that God so generously gave.  A gift.  Something that He wanted us to have.  We receive it in our hearts, we believe it in our minds.  We accept it in our lives.  God is good!


 

Mommy and Jay



Raghan and Jaylan





Favor...

What a good day for Jay.  I love when she is so content.  I'm so amazed and thankful at how blessed we are and how good God is.  I have a heart of gratitude, and a mind of mountain building faith.  Standing on tiptoes of expectations and praying that Jay has a wonderful weekend.  So thankful that God continues to bless us with His favor.  Such favor that we don't deserve.  When I think about the goodness and what he's done for  me...We see it, we feel it, we receive it.  Thankful. God is good.

Still Worthy...

What a day.  We took Jay to get shots today only to find out after she got the shots that they were the same shots that she's already gotten 3 weeks ago.  They told me at her 6 week shot appointment to bring her back in one month for her next set of shots which I thought we were doing when we actually didn't need to get the next set until her 4 month appointment.  The sad thing is I had to inform the clinic that they'd screwed up afterwards the doctor gets on the phone to apologize.  It's definitely been a frustrating day.  Besides that Jay's only gained 5 oz which puts her at 5 lbs 10 oz.  Apparently although she has a good appetite and has been eating a lot better, she's burning many calories just breathing and sucking.  It's not where we wanted her but I'm definitely thankful that at least she's going in the right direction and has finally passed her birth weight.  Oh yeah she also has an ear infection in her right ear.  I had to remind the doctor to check her ears before she left the room.  So disappointed in the Children's Clinic I must say.  I've spoken with ACH and from now on we'll be getting all of Jay's shots there. It already breaks my heart that she's in the midst of these circumstances only to be put through extra pain that wasn't even necessary.  My baby.  Asking God boldly and specifically, that He give Jay the ease to breathe without having to work so hard and burn so many calories.  I claim victory over her struggles and I praise Him in advance for what He's in the midst of doing in her life in Jesus' name.  Definitely claiming better and greater days ahead for Jay.  Although it's been a rough day I will continue to lift Him up because He is still and will always be worthy.  God is good.

Great and Mighty...

Today was a good day for Baby Jay.  Tomorrow we have shots again so she'll get a weight check.  I'm praying for at least a pound.  So thankful that God continues to hold our hands each and everyday.  I was reminded today that we walk by faith and not by sight.  What power in those words.  How devastating our lives would be if we only had sight to go by.  God has been so good to Jay and I pray that one day she sees for herself just how good He is.  Refusing to take life for granted. Absolutely embracing each and every moment.  Continuing to expect great and mighty things from our Great and Mighty God.  How Great is our God!!  Not underestimating Him and His power for God is good!

Free...

Thanking God for thankful Tuesday even if Jay didn't eat too much at daycare.  She's really congested and hospice is trying to get something called into the pharmacy for her.  I just hate that she doesn't feel good.  Claiming that tomorrow will be a better day and accepting nothing less.  Standing firm as the wind blows around me.  Being strong as the waters try to drown me.  I will never give up because I have been set free.  Since I have been set free I refuse to put the chains back on.  I'm free to believe, free to hope and free to trust Him.  My feet are planted and I praise God that He sent His only son to overcome any and everything in our lives.  Whom or what shall I fear??  God is good.

Happy 9 Weeks Baby Jay!

Hurdle #23
Today has been a wonderful holiday and 9 week hurdle for us and Baby Jay.  I'm so blessed to have her in my life and I can't wait to spend the rest of my life with her.  We surrender all to the King.  He can do more with all that we have than we could ever imagine.  So thankful today that His thoughts and ways are higher than mine.  Trusting and believing in His plan.  Praying for a magnificent week for Jay.  God is good.

Just waking up...

Jay's favorite position (mine too :))

Happy 9 Weeks pretty girl!



Happy Two Months Baby Jay!

Hurdle #22
What a blessed weekend we've had.  I continue to remain in awe of God as He continues to blow breath through Jay.  Tomorrow is another holiday already.  One holiday ago Jay made her entrance into this world on the 4th of July and little did we know what fireworks God had in store for us.  We continue to see His bright bursts of lightening each and everyday that we have with Jay.  Wow what great plans God had for her to make such an entrance into the world that has set the pace for the rest of her life.  It fits her well.  Trusting God with her life.  The definition of trust is "assured reliance on the character, ability, strength, or truth of someone or something; dependence on something."  Loving Jay and trusting God to continue to touch her each and everyday.  God is good.

Thankful...

Just thankful today.  My heart is full and overwhelmed and my eyes can't stop bleeding tears of thankfulness.  God is good.

Not lucky, but Blessed...

What a terrific Thursday.  I checked on Baby Jay today at daycare for the first time.  Michael drops her off and picks her up everyday.  It was a great feeling.  I could feel the love when I walked in.  At this time there are only 3 babies in Jay's classroom and there are normally 3 teachers.  Everyone gave me great reports from the assistant to the teachers to the nurse to our hospice nurse.  They all said that Jay was doing great, her breathing is good and she's very alert.  She had her assessment yesterday and we will have a conference in the next couple of weeks with the day school to put together a plan for her.  I don't know the details of the assessment at this point but we were told that the assessment was very good.  So thankful that God continues to show up.  And to think that Jay has the worst of the worst Trisomy.  All I can do is pray from my heart for the people that continue to underestimate my God.  The blood of Jesus...means life.  It means that we are set free and that we are overcomers.  It means that all things are possible.  It means that we who believe have a supernatural power in our lives that some just don't understand.  It means that we can have a peace in the midst of our storms that we don't understand.  When our boat is rocking back and forth on troubled waters, we can sleep and not stress out about it.  It means that we don't have to be strong because when we are weak He is strong.  It means that we can ask anything in His name because He has gone to be with the Father and intercedes for us.  You can't tell me I'm lucky because I don't believe in it but you can call me blessed because I do believe in Him.  I adore Him.  I exalt Him.  I honor Him. I place no one before Him.  God is good.

Singing to Baby Jay...

This is not a very good picture but I had to share.  I was singing to Baby Jay last night "Where would I be, you only know so glad you see through eyes of love, a hopeless case, an empty place, if not for grace."  I used to sing this daily when I was pregnant with Jay.  She was looking at my mouth in this picture and listening intensely until she fell asleep so peacefully in the same position.  Loving Baby Jay and the time we get to spend together.  God is good.

Happy Wonderful Wednesday!

This is the day that the Lord has made let us rejoice and be glad in it!



Daddy and the girls



Mommy and Baby Jay



Bray declined to have his photo taken...

A Good Work...

I am confident of this very thing, that He who began a good work in you will perfect it until the day of Christ Jesus. Philippians 1:6.  Thankful for God's presence in our lives.  No matter what happens and what challenges present themselves to us I believe that God will finish the good work that He started.  God doesn't do half done jobs.  I'm believing and expecting great things in Baby Jay's life.  I trust Him to continue to turn things around.  Tested but not defeated, challenged but not discouraged.  Trusting and serving God Almighty in Jesus' name.  God is good.