I am that I am...

Another great day for Baby Jay.  She was definitely awake more today.  We are loving on her so much.  We are in the process of finding her a doctor in Little Rock, hopefully a doctor who has experience with Trisomy babies.  Tomorrow I will talk with the neonatologist from ACH because I have several unanswered questions.  We would love to have a chest xray done to see if her breathing is related to her lungs more than her heart.  Sometimes she works so hard to breathe you can see her whole little body going up and down.  I find myself taking a deep breath along with her sometimes yet we are thankful that she's taking those breaths.  We will continue to speak life on Baby Jay.  Afterall Jesus said "All things are possible for He that believes."  We definitely believe that He is totally able, willing and capable to heal Baby Jay if that is what He chooses.    God said "I am that I am".  I'm thankful that I serve the Almighty God, the "I am that I am" God.  I wouldn't have it any other way.  We refuse to put God in a box, He's too Almighty for it.  We refuse to minimize God, He's too Almighty for that also. Oh the power that He holds blows me away.  God is good.

Handpicked...

Baby Jay's had a pretty wonderful day.  She's doing so much better eating.  I've even gotten her scheduled to get those shots that they don't want to give her.  I decided to go ahead and check into some childcare for Baby Jay since she seems to be doing so well so I contacted Milestones today and discovered that they will have an opening for her when I go back to work in a few weeks and it sounds like an awesome place to have her.  They will do their own assessment and testing and we'll all sit down and create a program plan for her.  I think it'll be great for her and it makes me feel a lot better.  Charlie came today and said she was doing great and her heart rate is great.  I'm absolutely thankful of the goodness that God has brought us today and I'm getting more and more excited about His manifestation that He has planned.  It's overwhelming to think about His glory throughout the whole journey.  It gives me chills.  One thing I've learned is that when God shows up, God shows out no matter what the circumstances and situation may be.  I trust God and would never doubt Him.  I'm standing on tiptoes of expectations and I know deep down in my soul that He's not going to let me down.  I am so thankful that I have been handpicked for this journey that God has placed me on.  He is too good to me.  When we're handpicked for life's journeys by God, we know that He's definitely working in our lives and I am not going to complain about that. Before I was born, God planned this journey and I know He planned it out of love, for God is love and God is good!

Encouraged...

I've chosen to spend my evening resting over Baby Jay and just listening to the sound of her breathing.  It's so motivating and refreshing in its own way.  With every breath I hear I am more and more thankful to God for being so loving, and full of mercy to allow us the privilege of having Baby Jay on this 22nd day. While it's so easy to get discouraged as doctors shake their heads and have long given up on her, I refuse.  Instead I choose to be encouraged.  Only Satan wants me to be down, but I bind every dart and ounce of negativity that he sends my way in the name of Jesus.  It's already done and praises to God have already gone up.  I'm encouraged because I trust God's plan.  Thankfully His plan exceeds me and my mind.  I come boldly before His throne everyday and I make my requests known to God through prayer and supplication with much thanksgiving.  Still standing on His word.  I'm encouraged because I have hope.  The Word tells us that faith is the substance of things hoped for and the evidence of things not seen.  You better believe that although it's hard to see the hope is definitely there.  I believe that no matter what the doctors think or say, God's will will prevail.  Definition of encouraged - to have hope and confidence.  Today I choose to be encouraged and tomorrow I will choose to do the same. God is good.

The blood...

The song on my heart today, "The blood that Jesus shed for me, way back on calvary.  The blood that gives me strength, from day to day, it will never lose its power.  It soothes my doubts and calms my fears.  It dries all of my tears.  The blood, that gives me strength from day to day.  It will never lose its power.  It reaches to the highest mountain and it flows from the lowest valley."  Thankful for the blood, where would I be.  God is good.

Happy Three Weeks Baby Jaylan!

Hurdle# 15
Today's been a pretty good day.  Happy 3 Weeks Baby Jaylan!!  We had our doctor's appt today.  Baby Jay now weighs 4.9 lbs so she has lost a little weigh.  We're not going to let that get us down.  ACH doesn't suggest that she get shots however.  We're not going to let that get us down either.  The pediatrician even told us not to worry about coming back for another appointment.  God's glory will come, we trust Him and when it comes it's going to hit like an unexpected burst of lightning!  She's still doing the same and although you can tell when she works hard to breathe I don't think she stops as often.  We're going to continue to work on these 2 oz bottles.  Today Mike's grandmother visited us and Baby Jay.  It was such a blessing to hear a little "Old School Wisdom" (as Michael calls it).  It was just what I needed.  She reconfirmed everything on my heart without even knowing it and I'll treasure her words for many days to come.  You can never put a price on "Old School Wisdom".  I know that in the end only God's will will be done.  I don't know what His will is but I will continue to stand firm on His WORD.  In the end all we have is His WORD and it's full of power that we'll never be able to wrap our minds around.  Today, I'm thankful, just pure thankful.  Thankful that God continues to blow that "God given breath" into Baby Jay, thankful that God places the right people in our lives at the right time and thankful that God is just plain ole good.  Can we say, God is good!

Speak

Baby Jay has finally taken her first full bottle.  2 oz is definitely a milestone for her.  I'm so glad she has an appetite.  She didn't sleep too well last night which means neither did I.  I know she just wants to be held because as soon as we put her down she wakes up and won't go back to sleep until we pick her back up.  We're really looking forward to her appointment tomorrow.  The song on my heart now is "Speak" by Myron Butler and Levi.  It says "I shall have what I decree.  Yes I believe it belongs to me, so I'm going to speak into the atmosphere.  Healing, deliverance, it's mine..."  We speak healing over Jay.  Jehovah Rophe is real and we do believe without a doubt.  We speak life over Jay everyday and so far God has honored His word.  We don't know how much life God is going to bless Jay with on this earth but He has definitely blessed her with life.  We are claiming tomorrow to be a very good day.  We are claiming tomorrow's appointment to be a very good appointment.  We have seen God's GLORY shine so bright thus far and we expect to see it even brighter.  Everyday that we wake up with Baby Jay we know that it's because of His mercy, love and goodness, and that He's touched her again.  God is good.

Hurdle #14
Today was Baby Jay's first day out of the house and I think it has made both of us pretty exhausted.  She's still breathing better and better since she's not stopping as often Praise God.  All in all she's had a pretty good day.  She's starting to get more color to her skin and is looking really good.  She's even sleeping better and better. She's starting to sleep in four hour increments at night so we're getting a little more sleep.  We're still praying great things for Baby Jay's life in the name of Jesus.  It's a relief that His power is infinite and not about medical and science.  It's only through our faith in Christ Jesus that we can wake up everyday and have the hope that we have.  He definitely wows us everyday.  Where would I be?  Where would she be?  God is good.

Dedicated back to God

Simple things in life...

Gotta Praise Him for the small things...

Just sitting here loving on Baby Jay and I have to say in the last half hour she hasn't stopped breathing one time.  She normally stops breathing like every 10 seconds.  I know the good Lord is working on her.   I bless His name for these last peaceful 30 minutes.  What a gift.  We don't thank God enough.  The last verse in the book of Psalm says "Let everything that has breath praise the Lord".  That's exactly what we are doing, praising Him even for the small things.  God is good!

Grateful...

Praise God, Baby Jay has made it another day.  Another day that we didn't think we'd have.  She is so strong.  She doesn't seem to be in any pain and we're thankful for that.  Jay's been a little restless today but I think it's because she wants to be held and not put down.  She really just wants to go to sleep on my chest.  I wish I could get her to eat more.  I'm very interested in getting her to the doctor on Monday to see just how much she weighs now.  I'm so proud of Baby Jay for pressing forward.  She definitely has a fight in her. I'm so thankful for the strength that God has given Jay.  It's only through God and He's definitely blowing my mind. The song on my heart right now is Grateful by Hezekiah Walker.  It says "I am grateful for the things you have done, yes I am grateful for the victories we've won,  I could go on and on and on, about your works, because I'm grateful, grateful, so grateful just to praise you Lord, flowing from my heart are the issues of my heart, is gratefulness." Gratefulness is flowing from my heart because I am truly grateful.  Still praising Him in the midst of it all...God is good.

Perfect Peace - Baby Jay

Life is a test...

Baby Jay is still doing great Praise God.  I think her heart rate was a little high today but I'm just thankful that she still has one.  She's been following me with her eyes and it just amazes me.  She tends to be so hungry all of the time bless her heart.  When she feeds it's like she sucks for dear life.  She sucks so hard that you can tell she's cutting off her oxygen supply and the last thing she wants to do is breathe.  I have to stop her feeding often to make her take a breath and she truly hates it.  You can't help but wonder sometimes when she gets upset and works herself up if it's because she's hurting some kind of way or if she's just crying because that's what babies do.  Every day has it's own challenges.  I've been reading and studying "The Purpose Driven Life" by Rick Warren and one of my favorite parts is in Chapter 5: Seeing Life from God's View.  It says that Life is a test.  It tells us that character is developed and revealed by tests and that God is constantly testing us through our response through people, conflict, success, illness, and disappointments.  God is watching to see how we handle our tests.  Do we panic, do we run to others or do we turn to Him and put our trust in Him and His plans for our lives.  Sometimes God puts our faith through tests.  I know my faith is being tested but I'm game for it.  You see the devil comes but to steal, kill and destroy. (John 10:10)  He wants to rip my character to shreds but since I am covered by the blood of Jesus my character is being built every single day throughout this journey.  He never said it would be easy but I'm sure Jesus didn't think it was "easy" to be crucified either.  I still trust God and the plan He has for our lives.  It is my prayer that He maintains the sanity of my mind and helps me to keep my focus on non other but Him.  Sometimes it is so easy to allow our flesh to take over our lives and think for us so I'm also praying that the spirit overrides the flesh.  Baby Jay is in His hands and God can do no wrong.  I trust Him.  After all, Life is a test and I refuse to flunk and fail. I know God is watching me and how I respond to this test that He has placed before me.  It's definitely a hard one but the one thing I do know about this test is that... God is good.

For I know the plans I have for you...

Baby Jay has made it yet another day!  We are on day 15!  We are thankful that everything that is destined to happen in Baby Jay's life was already in God's plans to happen and there isn't a thing that anyone can do about it.  God keeps on amazing me each and every day.  I asked Raghan to talk to Baby Jay today while I fixed lunch and I could hear her singing to Baby Jay, "you're going to meet God and Jesus and live in a castle and have fun" in her own tune.  What a realization for a 6 year old.  Of course she knows that Jay could be with us for a while too.  I'm definitely very, very tired.  I find myself trying to get many things done when Baby Jay sleeps instead of getting sleep myself.  Thankfully Michael took the whole shift last night and let me sleep all night.  I am definitely looking forward to another wonderful, beautiful day with Baby Jay.  I'm definitely learning to live in the moment and take it all in.  Time is so precious and God is good.

Happy Two Weeks Baby Jay!

Hurdle #13 - Completion of week 2
Today Baby Jay is two whole weeks old.  Two weeks!  I'm so excited.  She's looking and sounding good.  When she whine's and cries it's usually because she wants to be held.  She loves sleeping on my chest.  We are claiming great and mighty things in Jesus' name.  We believe that a great plan has been set into motion.  We are meditating on positive things because that's what God tells us to do in Philippians 4:8.  He said "whatever things are true, whatever things are noble, whatever things are just, whatever things are pure, whatever things are lovely, whatever things are of good report, if there is any virtue and if there is anything praiseworthy - meditate on these things."  Well having Baby Jaylan for two whole weeks when we didn't even know if we'd have her for 30 minutes is pretty praiseworthy to us, Glory be to God!  I'm definitely not going to focus on the negative but only on the positive.  When we surround ourselves with negative things and negative emotions then it eats away at our soul and before long we become bitter.  I choose to bind all negativity that "tries" to enter our life.  Everyday is a gift to us.  God is good!

More and more...

Another good day Praise God!  We are getting more and more attached.  Everyday Baby Jay seems to get more and more alert which makes it really hard to view life without her.  Sometimes she stares so deep into my eyes as if she knows what's going on.  She's definitely getting more spoiled just from being held all the time.  My prayer is that tomorrow will be just as good as today was.  God is good.

Great things come in small packages...

Baby Jay, our gift on the 4th of July, is still doing well.  She hadn't used as much oxygen today as she have in the last few days.  My hope is that her lungs are getting a little more and more stronger each and everyday as well as her heart. She's also more alert which I just love.  I on the other hand am getting pretty exhausted.  I'm going to try and get some sleep tonight although that's the time that Jay likes to wake up and eat every hour on the hour.  Right now I'm sitting and listening to her snore so peacefully.  And to think they've given up on her.  They just don't know that great things come in small packages.  Baby Jay has definitely rocked my world in such a good way.  God is good.

Favor

We've made it through day 11.  It's only through God's favor that we've made it.  Baby Jay is definitely being covered with non other than God's favor.  It's been a pretty good day.  Baby Jay is still doing well although she continues to stop breathing from time to time and more often than we'd like for her to. It's amazing to me that when she fails to take a breath for however many seconds, God shows up and with a fresh breath for her.  How easy it would be to just slip away but God is so good that He allows her spirit to remain with us during those nonbreathing moments.  We can do nothing but be thankful.  I couldn't count the number of times that she's stopped breathing on us.  We are still praying over her little body from head to toe, her brain, heart, kidneys and lungs.  We can tell that her lungs are getting a little stronger each day.  Her pediatrician would like for us to bring her in a week from Monday to weigh and assess her.  I'm very thankful for the presence of the spirit for where the spirit of the Lord is there is liberty.  We have been set free!  We aren't bound by anything all because of the blood that continues to reach us and bathe us from head to toe.  Where would we be? Appreciative for today and looking forward to tomorrow.  We are still praying that God continues to make His strength perfect in our weakness and that He continues to bless us with His perfect peace.  God is Good.

What really matters...

Baby Jay had another good day.  She's still eating better and better and we are so thankful for that.  Sometimes as I hear her deep breathing I'm thankful for that as well because at least I know she's breathing.  One thing that I've learned throughout this journey is that there are so many day to day things that are no longer important.  We spend so much time focusing on things that never mattered to begin with.  Was our day really that bad, are we really that unhappy, are we really that ready to get this week over with hoping that the next week is better, are we really dreading getting out of bed for another same ole day.  Every day is a "New Day" and if we really appreciated the "New Day" that God has blessed us with, we'd be in such a better place.  Why do we complain, is it really worth our time?  I'm definitely learning to embrace the moment because the next moment is never promised.  You hear that all the time, "tomorrow isn't promise" but do we really live today thinking and knowing that tomorrow isn't promised?  Do we really look at all that we have and say thank you Lord I am truly blessed?  Do we go outside and take in all of the beauty that God has surrounded us with?  Do we look at our children run around with their childlike joy and take the time to thank God for blessing our children to be so innocent and happy?  I thank God that when I look at Baby Jay most of the time she's sleeping so peacefully.  I indulge in those moments.  These are the moments that are most important to me now.  The innocence of our kids.  A simple breath of life, a simple stretch of an arm first thing in the morning, a simple hug goodnight, and a beautiful bright smile that says "I'm happy and I love you".  These are the things that really matter.  I would love to feel Baby Jay give me a hug one day and smile at me to say "I'm happy and I love you".  I would love to see her run around with a childlike joy so innocent and so happy.  I already love seeing her stretch her arms when she's trying to wake up and would love to see this even more.  I definitely want to hear her breathing.  Sometimes we don't realize just how hard it is for some to take a simple breath.  Interesting, simple to us, difficult for some. We take advantage of the simple breath when it is such a blessing from God.  Yes, I can definitely say that I'm learning about the things that really matter in life and I'm thankful for every one of those moments that God chooses to bless me with.  Psalm 136:1, Oh give thanks to the Lord, for He is good! God is good.

Blessed and Thankful

Today has been a pretty wonderful day.  Baby Jay's been doing good and eating more which is a good thing.  Our Hospice nurse Charlie came today and was very pleased at how well she's doing.  Baby Jay is the sweetest little angel baby.  I am so thankful for Jesus.  Thankful that He sits on the right hand side of the Father making intercession for me.  Thankful that when I cry He cries because the pain I feel, He feels.  I know in my soul that no matter what happens, with Him I'll never be alone.  Where would I be??  Only He knows.  I couldn't be any happier right now in my life.  I know it's in His will.  It's definitely a sense of joy, and not happiness for happiness is based off of the things that are happening around you.  I know I have joy because it's coming from up above.  Here we are, living another day that wasn't promised to us.  Another day that we were told we probably wouldn't have.  If only I had a remote control and could press pause.  This moment just feels so good. We are so thankful for all of the support that we've been blessed with.  It's amazing to know that so many people are praying for our strength and for Baby Jay.  I don't think we'll ever be able to wrap our minds around the power of prayer.  I feel that because of the power of prayer and God's goodness, Baby Jay is here with us now.  To know that the doctors have given up on her doesn't phase me one bit because I know how good my God is.  It was never up to the doctors to begin with, Thank God (literally).  It's always been up to God.  The doctors couldn't even help the woman with the blood issue in Mark 5:25-34 but when she touched the hem of His garment she was healed instantly.  Well on Jaylan's behalf I have touched the hem of His garment so in my heart I know that Jaylan is already healed whether it's this side of glory or the other, my little sweet angel baby is already healed.  Blessed and Thankful.  God is good.

A Praise on the Inside...

Sometimes you pray so much that you just don't know what else to pray so when I come across these moments in which I'm speechless I ask God to put a song of meditation on my heart.  As I sit and listen to Baby Jay struggling with her breathing, the song on my heart is by J Moss and it says, "There's a praise on the inside, that I can't keep to myself, a holler stirring up, from the depths of my soul, so excuse me if I seem a little giddy or maybe even strange, but praise is the way I say thanks."  I've had my Baby Jay for 8 days now and although I'm giving her more and more oxygen each day, I'm blessed to have had this time.  Time to hold her, time to feed her, time to talk to her, time to stare into her pretty brown eyes as she stares back, time to rock her, time to hear her, time to console her, time to sing to her and time to read nothing more powerful than God's Word to her.  This evening my Pastor came to do Jaylan's dedication.  It really meant a lot.  I sit up most of the nights making sure her chest rises, up and down, up and down.  Sometimes it stops, no not sometimes, a lot of times.  She stops breathing it seems more and more each day, but the fighter in her from non other than the Creator Himself, allows her to come back and take another breath.  I find myself saying more and more each day, "Breathe Jaylan, breathe". But oh if and when that hurdle moment comes when she no longer hears me because her little angelic spirit has already slipped away, what will I do? What will I feel?  It all seems so unreal.  Again, praising Him in spite of.  It's all for His glory, the sadness, the pain, the overwhelming feeling.  I know it's all for His glory.  He loves me, He loves her, we love Him.  We can't go wrong when it's all for His glory.  God is good.

The Greatest Love Story Ever Told...

Hurdle #12 - Completion of Week 1
I'm falling in love with Baby Jay more and more everyday.  We had a pretty good night and we've had a wonderful day.  My day is complete just sitting and watching her breathe.  I've had to give her oxygen a couple of times because of her rough breathing.  I'm just so thankful to be able to spend this time with her.  I told Raghan to make sure that when she prays to thank God for blessing us to bring her home and have time with her because it's ONLY because of God that we were able to do so.  She says mama she just so cute.  I love her little lip.  Baby Jay's Hospice nurse came to check on her today.  Her name is Charlie and she is so sweet to us.  She let me hear the raspiness of her lungs and it made my heart sad.  She also sad that Baby Jay stops breathing for 10 to 20 seconds at a time.  That totally overwhelms my heart.  I've been looking at Jay and asking her how can I possibly let her go??  Charlie said that the intervals of non breathing would get longer and longer until she falls asleep and passes.  I can't even bear to think about those words right now.  I knew that if we brought her home from the hospital that we would definitely get attached.  Please don't be mistaken, I still believe that God is a miraculous healer if that's His will for her life.  I pray over her little soft, sweet, gorgeous body every single day.  Just in case God does go ahead and bring her home, I've decided to read to her the "Greatest Love Story Ever Told", the story of Jesus and His great love for us.  Afterall if she's going home to meet Him she should know all about Him.  It's a wonderful thing when I'm reading to her that she stares into my eyes holding onto every word that comes out of my mouth.  I just love it!  I embrace those moments and I know that one day they'll come back to me when I need them the most.  On the other hand I'm reading the book "Heaven is for real" to Raghan.  What a coincidence that it starts off with the 4th of July holiday.  I'm still praying for God's perfect peace and preparation for all that He has in store for us.  I fully believe that His ways are higher than my ways and His thoughts are higher than my thoughts and He can do far more exceedingly and abundantly more than I could ever ask or think.  Praise God!  God is good.

Another day...

Hurdle #11
We've made it through the first night at home.  It was one long night I must say. I was so excited to be home and be able to lay in my own bed but I never made it away from the couch last night. Jay cried most of the night.  I'm pretty sure it's because she's not getting enough milk and she had gas on her little tummy.  She's only taking about 1/2 an oz to an oz at a time before she falls asleep.  She's yet to drink a whole bottle therefore she's getting hungry a lot quicker.  She only slept in 5 and 10 minute intervals.  I'm definitely exhausted but taking in every bit of it that I can. Hospice set up an oxygen machine in case she has any more apnea episodes, thankfully we didn't have to use it last night.  They also brought medicine for seizures should she start having them and that scares me to death since I know she had one or two in my womb.  They also brought morphine for pain in which I can't even think about right now.  It's all so overwhelming.  I'm just praying that God keeps me.  It's all in His will and He has the final say so and I am SO thankful for that.

Jay is sleeping now and she just looks so peaceful.  I love when she's peaceful, it makes me peaceful.  Today's been a good day.  But then I think about her slipping away from me to meet her Creator and selfishly, it saddens me.  Every moment that I spend with her makes a small piece of my heart shatter.  When I look down to pick up the pieces of my heart to put it back together, they're not there.  They seem to be disappearing right in front of my eyes.  How could so much be wrong with her little body when so much look so right??  I don't know how Hannah did it in 1 Samuel.  If you don't know the story of Hannah she was a one of a kind woman whose husband had another wife that could give him children but Hannah couldn't.  Hannah prayed and cried her eyes out for a child.  She made a vow to God that if He blessed her with a child she would give the child back to Him for the rest of his life.  Well He blessed her with a child (afterall He is an awesome God).  Hannah took care of her son Samuel until he was about three and once she weaned him from nursing, she packed him up and took him to the temple for her annual sacrifice and gave him over to the priest to serve God for the rest of his life.  I couldn't imagine wanting a child and praying and crying my eyes out promising God I would give the child back if He blessed me with one only to keep the vow and literally give him back at the age of three.  He's still a baby.  She was one great woman to form such a bond with her son only to give him back and only visit and see him once a year.  Afterwards she rejoiced and praised God.  What an attitude.  I admire Hannah and I pray that I can have the strength and committment to God that she had so long ago.

What I'm learning is that sometimes God brings us to places where we have no control so we have no choice but to lean on and trust in Him.  I'd rather lean on and trust in Him any day than myself or MAN. I've had my sweet baby Jay another day and that's reason enough for me to rejoice so I believe I will.  God is good.

Biggest Hurdle so far...

Hurdle #10
We are now home and it definitely feels good to be home but I know it would feel better under different circumstances.  Hospice just left.  That was the hardest thing ever signing those papers and receiving liquid morphine on my birthday for my newborn baby.  Wow!  This is definitely the biggest hurdle so far.  However when I look on the bright side of things, I woke up this morning with 3 beautiful kids on this side of glory, so I really can't complain.  I still give God the glory and praise Him in spite of.  I'm thankful that I wasn't at a memorial service on my birthday because that was my first thought on Monday when my water broke.  This has been one long week, but I am so in love with that little angel girl.  I still don't know how I can let her go.  But I'm sure God has a plan.  God is good.

Well enough to go home...

Hurdle #9
Baby J's been doing better and better each day and still maintaining consistent vitals.  They are in the process of discharging her.  Although I've longed to go home it makes me nervous to think of what could possibly happen at home.  Being in the hospital just seems so safe.  However I think we're as ready as we could possibly be.  God has definitely been preparing us for this moment.  Once again I have that sense of calm and peace that I've had throughout this journey.  On Monday the 4th I would have balled my eyes out at the fact of bringing Jay home only to walk in and find her not breathing.  One thing that I have definitely been in prayer about throughout this journey is that God would prepare me for these moments to come when they were actually here.  I knew that previously I wasn't ready for them but I was trusting Him to have me ready when they presented themselves and being the awesome God that He is, He hasn't failed me yet.  No we don't know what the future holds but yes I know to trust God because He definitely holds my future and baby J's future.  He is so good to us.  I asked Raghan how did she feel about Jay coming home and she got all excited.  I had to remind her that although Jay was coming home it didn't mean that she would stay forever.  You could see me pulling that little bit of joy back away from her.  I then told her that I needed her to help me when she came home by being a good big sister even if it is for a small amount of time.  I'm thankful to God for preparing Raghan for something grand in her life.  I can feel it in my soul.  This journey for her will be an important milestone for her just as David being a young boy and tending sheep was an important milestone for him.  You just never know what things God's putting in our path to make us into who He desires us to be.  Afterall being a Christian isn't about sameness, but about change.  God is good.

"I'm a survivor"

Jaylan is still fist pumping along.  Two and a half days and going strong! She had a great night and maintained consistent temp, heart rate and respiratory.  She ate 4 times last night and peed and pooped several times.  The jaundice they noticed yesterday has slowly began leaving.  God is good.  I'm thankful that she's doing well and not struggling.  The nursery nurses were just talking about how amazed they were because she's such a fighter and keeps doing better and better.  One of her nurses said that this is her third trisomy baby that she's taken care of and the other two had nothing on my Jay.  I know without a doubt in my heart it's the prayer.  The power of prayer can blow you away.  I just don't know how anyone can go through life not being covered by the blood of Jesus it just gives me chills.  My prayer is that God blesses my attitude to continue to embrace whatever time we have with her and only He knows.  Romans 8:28 tells us that all things work together for good for those that love God, for those who are called according to His purpose.  I'm excited to see what God has in store. God is good!

Wait Mode...

Jay had a pretty good day today.  The pediatrician has been really good to us with providing insight and direction.  She spoke with ACH and UAMS today to see if Jaylan has full Trisomy 13 or maybe partial but they said it was full.  To my surprise her abnormal heart isn't the biggest of her problems but it's her brain.  Makes me so sad that she looks so perfect and normal only for her not to be.  They're still telling me that it's just a matter of time.  Right now we are in the boarding room right across the hall from the nursery which means I've been discharged but Jaylan hasn't.  I'm trying to embrace every moment that we have with her but the longer we have the harder it gets.   She smells so good and she has the most beautiful black curly hair but I know that I won't remember her smell when she's gone or the softness of her hair and skin.  It makes me feel really helpless.  I wish I was back home laying in my bed with her still in my belly where I know she was safe and having no struggles.  I just can't envision her little precious body with no spirit.  Although we've already taken our mind to her memorial service I still can't completely wrap my mind around it.  Michael said today it just seems like we're in a bad dream and it doesn't seem real.  Raghan asked when was she coming home.  It really broke my heart.  She thinks that since she is still alive that she's all better and I had to remind her that Jay was still sick.  If she lives long enough they're going to push for us to bring her home and use hospice.  The sound of that just takes my breath away.  How do you even think about calling in a hospice nurse for your newborn baby??  I'm still giving God the glory.  I want to find the joy in the circumstances.  God is so good to us and I know this is all in His plans and His will.  I just don't want to miss the purpose of it all.  I'm still praying for the peace that surpasseth all understanding.  God is good.

Today's a new day...

It's a new day and baby Jay is still with us.  God is good.  Can you believe that "they" didn't think she'd still be alive??  You can't put a time limit on God, thankfully He's in control and not us.  She spent the night in the nursery last night because I was so exhausted.  Thankfully she didn't have any apnea episodes and she ate decently.  She's peacefully sleeping right now.  We'll see what God has in store for us today.  As long as it's His will (and it will be), we'll be ok.  God is good.

Pressing on...

Jaylan is still with us though she's had her struggles.  Although she doesn't eat much, she eats and although she hasn't gone through many diapers she is going through them.  Today has been a great day but a hard day.  We've had a ton of visitors, family and friends, and the support is awesome!!  Thank you to everyone that came by the visit, hold and love on baby Jay.  That's our goal, to give her as much love as we can possibly give.  We don't want to rob her of a lifetime of love because of the fact that we may only have her for a short period of time. 

She started off eating better and better but now she's slowing down.   She's beginning to have harsh breathing problems.  I was feeding her today when Michael and I noticed that she was starting to turn blue.  I stopped her feeding and she started gasping for breath just as the pediatrician walked in.  It was the scariest moment of our life.  How do you make the decision to not resuscitate your own child if need be?  We don't want her to struggle and it was the hardest thing ever to watch and be so helpless, a feeling I've never felt in my life.  All we could do is hold her and love on her.  The pediatrician said it looked as if she was trying to pass.  We just want her to be peaceful.  After several minutes of gasping she calmed down with shallow breathing and her color returned.  It totally breaks my heart.  You want to bear the pain for your babies when they are going through and to not be able to do that is definitely overwhelming.  Now I'm scared to feed her in fear of cutting off her oxygen.   It makes me think she's starving but the pediatrician said she wasn't.  I just want her to be comfortable.  Under normal circumstances I would be getting ready to go home with my new baby but instead we've just had a teleconference with UAMS to give us options.  There were only two, discharge baby Jay and have hospice come or allow her to stay in the hospital for a few more days.  I feel more comfortable here in the hospital for a few more days.  On a lighter note, we had a volunteer photographer come and take pictures of our family.  It was very sweet of her.  We also got Jay's footprints done today.  You never know what God has in store.  He's the potter we are the clay.  He has His own plans.  I'm definitely still praising Him in spite of.  God is good.

Our little fighter...

Jay's first night was pretty peaceful.  She's still yet to cry bless her heart.  She's such a good baby and I could hold her forever.  Her heart rate is still consistent which amazes me how good God is.  The cardiologist at ACH gave me the assumption that she was only living off of me in the womb.  Well, she's still going.  Only God knows how strong we really are, afterall He is our Creator.  I've entrusted her in His hands and I'm going to embrace every momet I have with her.  She's so soft and precious.  Never could I have imagined what this moment would feel like.   God is good.