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.

The Joyful Moment has arrived...

Hurdle #8
Baby Jaylan entered the world at 4:55 pm,  weighs 5.8 lbs and is 18 inches long AND she's beautiful.  I had so much peace before and during delivery and I'm so thankful for that.  Just before I started Dr. J came to my side and whispered, "I've been praying for you all day".  I love that woman.  She was out in less than 5 minutes.  She never made a peep when she was born which made me nervous that her spirit didn't make it but it did Praise God!  She's yet to cry but we've been hugging and loving and kissing on her since she's made her debut.  We don't know how much time we'll have with her but we'll definitely embrace every moment that we are blessed with.  Grateful.  J has had some struggling with her breathing but they gave her some oxygen which has helped her greatly!  Her heart rate started around 50 and last check it's 118.  Have I said how good God is lately??  Raghan came and held her and kissed her.  It was really sweet.  That was her one request, to just see her one time.  She has 10 perfect fingers and 10 perfect toes.  God is good!

It's Time ...

It's about that time, I'm feeling nervous and my heart is overwhelmed! I'll be delivering any minute now. Dr. J just got here bless her heart she doesn't even work on Mondays and it's a holiday. The song in my heart now is, "Hold my hand Lord, please Hold my hand". I'm as ready as I could possibly be.  I'm feeling totally honored to bring baby J into this world.  Thank you Lord.  My next post will be after she's born.  God is good.

Half way there...

Well we are half way there.  I've dilated to 5 and I expect things to start speeding up. I'm sitting and listening to Kirk Franklin's "I smile".  It's become one of my favorite songs lately.  It says "Today's a new day and there is no sunshine.  Nothing but clouds and it's dark in my heart and it feels like a cold night.  Today's a new day where are my blue skies, where is the love and the joy that you promised me you tell me it's alright.  I almost gave up but a power that I can't explain, fell from heaven like a shower.  I smile even though I'm hurt see I smile.  I know God is working so I smile, even though I've been here for a while, I smile,  smile..."  God is good.

And it begins...

Hurdle #7 Today is the 4th of July.  Both of my kids spent the night with my parents last night and my neices.  I woke up this morning prepared to work half a day so I wouldn't have to take a day of leave.  Around 6 am as I was debating whether to sleep in a little longer or to get on up I felt my water break.  All I could think was this can't be I'm not scheduled to go in for another week and two days .  Am I ready??  I was 100% sure that it was broken so I woke Michael and the process began.  I showered (although I know I wasn't suppose to), we packed bags, (clothes for the kids, a bag for me and a bag for Jaylan.)  Michael shaved, I took a quick picture, Michael finally found his wallet and we were out the door.  I'm not happy that my house is a mess.  I don't like coming back to a messy house so I know this will be another thing that bothers me.  Since I planned on working anyway, I had Michael drop me off at the office so I could meet up with Tiff, my replacement for maternity leave to wrap up some loose ends and answer any last minute questions.  I then came on over to be admitted.

As we left our house this morning I began thinking, Jaylan I'm not ready to let you go.  I thought I had another week with you.  I wondered as we pulled away from the house and drove up Country Club hill and then down what would I be thinking when I came back over the hill.  Would Jay be gone??  I just want to embrace my life now with all of my kids on this side of glory.  My heart is getting heavy and sad.  They've told me that my blood pressure is running a teeny bit high but I'm sure it's because of the anxiety.  I'm praying that God will take this anxiety and fear of expectations away and again replace it with His perfect peace.  Don't get me wrong, I'll never in my life underestimate the power of God and His abilities.  I know without a doubt that Jaylan can be healed miraculously, because whatever happens is all for His glory.  However, as Jesus was praying in the garden in Mark 14:36, he said, "Abba Father, all things are possible with you, take this cup away from me, nevertheless, not what I will but what you will."  Even Jesus knew that although God is all powerful it still had to be in His will.  We've prayed adamantly from the beginning of things that whatever happens, it's all in His will and His will could very well be to take her on to heaven.  After all, she was His to begin with, I've just been blessed and privileged to carry her over these last several months.  One thing that I've definitely learned is that this was never about me, and not even about Jaylan.  It's always about Him.  God is good.

At this point no one knows that I've been admitted except for our parents, and Jan and Tiff from work.  We just want to keep everything as calm as possible.  It's so important that I keep my mind stayed on thee and His perfect plan and will for our lives.  They started my induction about 20 minutes ago and the contractions are definitely coming though not that bad.  I still feel a lot of peace right now and I just pray that it continues to flood me.  We are in "wait mode".  Until later...God is good.

Our Backstory of Jaylan Khristian

For a slight moment my heart stopped when we received the call from my OB doctor's office telling us that my bloodwork came back positive for an increased risk for down syndrome.  I was breathless as I ran out to call Michael and then to my friend Mel's office because she seem to have such a gift of quiet comfort through listening ears.  I cried my heart out that day.  Dr. J's office scheduled a special ultrasound for me at the UAMS genetics clinic.  For three long weeks I tossed and turned at night and balled my eyes out, wondering how could this pregnancy be different from my first two and why me at such a time in my life.  I began to pray like I'd never prayed before for a healthy child. 

Hurdle #1
On March 21st, one day after our seven year anniversary, we arrived at the genetics clinic and I remember walking up the incline to the building's front doors and my legs feeling like jelly.  I wondered at that point what thoughts would be going through my head when I walked back out of this building and down the incline.  We checked in with LaKiesha, who was a gorgeous looking diva with an afro and huge earrings.  We waited for over an hour to be seen.  Our first visit was with a genetics counselor named Kate.  The first question she asked is "what have you been told about this visit?"  At that point I balled my eyes out again.  I couldn't even talk above a whisper.  Kate assured me that it's not a confirmation of downs but just an increased risk and with my genetics and background there was only a 1% chance that my baby had downs.  I felt a slight relief.  She told me of a number of things that this "special" ultrasound would check for and smiled and shook her head saying "how do you feel now??"  "Are you ok?? huh are you ok??"  Clearly you could tell that chipper Kate didn't have kids.  She explained that once the US was done the tech would leave and the doctor would come in with the results. We waited for another half hour for the US.  The tech was very cold, and barely spoke two words to us.  I had told myself I wasn't going to look because I didn't want to see any of the "number of things" that Kate had previously mentioned, but I found that I couldn't take my eyes off of the screen that sat so perfectly in front of our faces.  I couldn't help but pray for I could feel the weakness of my flesh taking over.  After about half hour of staring at this screen, the tech excused herself and said the doctor would be in shortly with the results.  After waiting for another half hour, in walks Dr. Maghann along with Kate as well as another counselor, Lori.  Once again my heart stopped.  Kate didn't tell me that she or anyone else besides the doctor would be seeing me again during this visit.  Quietly the doctor sat down and did his own US.  And then he spoke.  He said "I know you want me to tell you that everything is all honky dory with your baby, but it isn't.  We didn't find any signs of down syndrome which is good, but we do see that on her right side she has cleft lip and palate forming."  The tears began to roll.  How could my baby be forming less than perfect??  He also said, "it's nothing to be worried about.  Arkansas Children's does amazing things with cleft lip and palate and it's something that can be easily fixed.  However I do want to see you back because we can't see the heart good.  I'm sure it's okay and it's probably how she's positioned, but I want to see you back in a three weeks."  Chipper Kate did her famous head bobbing, asking me "how do you feel??"  "Are you ok, huh, are you ok??"  Lori was an RN that was there to shed some light on what to expect once I delivered Jaylan at UAMS.  This was the first of me hearing that I would deliver at UAMS.  After delivery Jaylan would be transported to ACH to make sure she could feed properly.  In the meantime, a meeting would be set up for us and the surgeon that would operate on Jaylan's cleft lip and palate just months after birth. 

We checked out of the clinic that day with LaKiesha again.  I remember tears were still making their way down my face.  Lakiesha began to whisper, "just believe, believe, believe.  That's all He wants you to do is believe".  I have replayed this moment over and over in my head.  It's amazing how God can place the right people in your path as you need them.  As I walked out that day, back down the incline, my legs felt worse.  This was my first "OVERWHELMING" moment of this journey.  My mind wasn't stable enough to handle such news.  Even with Michael by my side I felt alone although I knew this happened to thousands of people.  That night I journaled and prayed to God that my hope was slowly fading away and I needed His strength to be made perfect in my weakness.  I didn't have a shadow of a doubt that He couldn't heal baby Jaylan and make her whole.  I prayed that He would lay His hands on her in my womb in JESUS name. I thanked God for His grace and mercy throughout all of my own imperfections in life and I trusted and depended upon His power.  I began to vision walking out of the hospital with beautiful Jaylan in my arms made whole.  I believed because my soul knew that God would never put more on me than I could bear.

I met with Dr. J that Friday after my visit at UAMS.  I love Dr. J.  She bounced in the room as if everything was okay never looking up from my chart.  She said "How are we doing??" and when I could respond no more than a whisper once again because of the huge lump in my throat and the tears running down my face she jerked her head up and said "what's wrong??"  I explained and she apologized because she hadn't had a chance to read the report.  She reassured me that cleft lip and palate was more common than I thought and that it was normal for UAMS to want me back for a second and maybe even a third US to look at Jaylan's heart.  She was so sweet to me that day.  She told me she would call Dr. Maghann herself to find out more details on what was going on and I could call her at anytime if I needed to talk or ask questions.

Hurdle #2
On April 13th, we met with the surgeon and nurse from ACH that would be doing Jaylan's surgery only 2 1/2 months after birth.  From the moment we entered the small clinic room, the tears came.  Once again I couldn't speak above a whisper.  The surgeon and nurse were awesome!  I felt comforted by the words they spoke and their presence.  They told me what to look forward to for her first year of life and they gave me a couple of specialty bottles that I would use to feed Jaylan with.  They explained that Jaylan would have a team of specialists follow her for several years in her life because babies born with cleft lip and palate can have speech problems, hearing issues, and dental issues but would otherwise lead a normal life.  They gave me a huge manual to go home with.  I've yet to open it.  I felt pretty good once we left ACH.  We headed over to UAMS for the follow up appointment on Jaylan's heart.  Once again I was in prayer mode.  How quickly I've learned to be prayed up or your mind can take you places that you've never imagined.  This time we saw a different tech at UAMS.  She was a doll.  She spoke kind words to Jaylan during the couse of the US and explained to us everything that she was looking at.  I was thankful to have her and it put me at ease.  Once she excused herself a half hour later, Dr. Dajani introduced herself to me.  After doing her own US, she explained that Jaylan had a small amount of fluid around her heart and one side looked slightly larger than the other side.  I began to panic but no tears came.  She felt that there was nothing for me to be worried about and if anything was wrong it was correctable.  However she also said, "looks like she has some urine backed up in one of her kidneys" but as she went to show me, the urine was gone so she said "oh looks like she just emptied, I don't think that's anything to be worried about.  I'm going to have you see a cardiologist at ACH just to be on the safe side that I'm not missing anything with the heart.  I think she's going to be fine but I want to be sure."

I left this appointment feeling a little better than the first UAMS appointment.  My legs didn't feel quite as bad walking down the incline, but I was beginning to feel more and more emotionally and physically drained.  There is nothing like hearing that a number of things could be wrong with your unborn child that is still forming, but I still believed in the Almighty's power no matter what I was being told.  I was definitely overwhelmed but my faith was not going to be broken.  I began praying even harder and quoting God's word back to Him.  A sense of peace began to come over me like I've never EVER felt in my life before.  I began to open up more about Jaylan and what the doctors were saying about her.  The tears stopped and the smiling began again.  The Word is so right. Philippians 4:7 tells us that God can give you peace that surpasseth all understanding.  It's so amazing!!  I've never experienced such peace before.  I began praising God in spite of.

Hurdle #3
On May 2nd, I drove to ACH alone to see the cardiologist.  Michael had a final that he couldn't get out of.  My appt was scheduled for 1:00 pm.  I never imagined how my life would change on this day.  This was the biggest hurdle so far.  I waited in the waiting room for an hour before they called me back.  Once they did there were two techs.  I laid on a table for an hour and a half as they looked at Jaylan's heart.  I remember as if it was yesterday.  One of the techs began gasping as if surprised at what she was seeing.  If I remember correctly, I counted about five gasps during the course of the US.  At one point I remember the tears came back and began rolling down the sides of my face.  I already felt that something was terribly wrong so I began to pray.  God is good.  He placed a song in my heart.  "Like a shipped that's tossed and driven, battered by an angry sea.  When the storms of life are raging, and the fury falls on me.  I wonder what I have done, to make this race so hard to run.  Then I say to my soul don't worry, Oh, the Lord will make a way some how."  I sang that song over and over for about 45 minutes in my head.  He then changed it to "Calvary, Calvary, Calvary, Calvary, Calvary, Calvary, surely He died on Calvary."  I knew in my heart that Jesus' blood was covering me from so long ago on Calvary.  I knew that on this day of May 2, 2011, His blood was reaching me.  And that comforting peace that surpasseth all understanding covered me from head to toe. 

Once the techs were done, they excused themselves and returned about 10 minutes later with Dr. Buss.  He was tall, thin with glasses and had quite a disturbed look on his face.  I remember there being lots of awkward silence.  He began by saying "Hi, I'm Dr. Buss, and the heart isn't normal."  Wow, there the breath was again, knocked out of me.  He then said "All four chambers are there, but the areas of the heart that should be crisp and tight, are loosey goosey" all his words.  He said "I think she'll be fine for the rest of the pregnancy and through birth."  I smiled at him and he didn't flinch.  He said "what exactly did they tell you at UAMS?"  I told him.  He said "Did they tell you about a kidney malfunction?"  I told him what they said about her kidney but that it was ok.  He said "did you actually talk to Dr. Dajani?  They put her kidney malfunction in the report they sent over."  I told him that I did indeed talk to Dr. Dajani.  And there that awkward silence was again.  And then the biggest question of all came.  He said, "Do you have other kids??"  I told him, yes I had two.  He said "Are they normal??"  I said yes they are.  He said "hmmm".  He proceeded to tell me that he thought Jaylan had a chromosome syndrome called Trisomy 13 or 18 and that's were the cleft lip and palate came from.  The cleft lip and palate, heart defect and kidney defect were all three related to Trisomy.  I didn't ask any questions.  I just said "hmmm".  He said, "Did you come alone today?"  I said yes I did.  He said "so you're driving back to Conway alone today?"  I said yes I am.  And there that darn awkward silence was again.  I smiled.  He said, "Do you have any questions for me?"  I said, "Can she still have a normal life with her heart defect?"  Thinking worse case scenario he would say she might need heart surgery or worse worse case a heart transplant. SILENCE.  And then he repeated himself, "I think she'll be ok for the rest of the pregnancy and at birth."  One of the techs asked if there was someone that I could call.   I told her that I thought my mom or my husband had been blowing my phone up.  The tech walked across the room, dug through my purse for my phone and gave it to me.  She said "Why don't you take a moment and call someone."  I said ok and thank you and smiled.  I couldn't realize why they were staring at me with concerned looks.  I just didn't understand in that moment but I could tell that Dr. Buss was choosing his words wisely.  Dr. Buss asked me a couple more questions as to what brought me to the genetics clinic in the first place and then advised me to speak to Dr. J about an amnio.  He said at this point we were looking at a black box and that he could be wrong, maybe it was three separate issues but I would have to get an amnio to know anything more.  I thanked him and smiled again and he excused himself.  One of the techs sat down on the bed and asked me to take some time before I left.  They paused and stared at me.  I said "I believe and I'm faithful"  she said "God bless you" and gave me a hug.  They excused themselves as I gathered my things and walked through a dark, closed down department and left.  It was 4:30 pm.  I had been there for 3 and a half hours.  As I got on the elevator my heart became flooded with "Calvary" again, except this time I sang aloud. 

I called Michael on my way home and explained everything to him.  He called me back at least 4 times to make sure I was ok.  I told him I was fine.  Still no tears.  When I got home we didn't speak much.  It wasn't until I took some brochures out that I had received about a month before from UAMS that I found out what Trisomy 13/18 really was.  It's a chromosone syndrome far worse than downs in which there's an extra number 13 chromosone at conception.  Science has never been able to explain it.  With Trisomy 13/18 comes no quality of life and most likely severe mental retardation.  There are several abnormalties and as the brochure said "sadly most newborns don't survive".  And there it was.  My precious Jaylan that I had already began visioning whole and complete, running and jumping, smiling and frowning, would have no quality of life and probably wouldn't survive.  So that's why Dr. Buss never spoke to me past birth.  That's why the three of them kept presenting the awkward silence and the weird stares.  They were waiting for me to break down.  Well hallelujiah for peace that surpasseth all understanding.  What an amazing thing to have during such a time.  God is good!  During that moment of reading the brochure, the tears didn't come, but my heartbeat did stop once again.  It felt like a dream or was it more like a nightmare.

At my next appointment with Dr. J, I explained everything to her and that they didn't think Jaylan was going to survive and the tears finally came.  I told her, that I still trusted God no matter what and I only wanted His will for Jaylan's life because He knows what's best and I didn't doubt Him.  I told her that I still believed!  She smiled and gave me a hug and told me that she was sorry about it all and that she felt I should get the amnio so we could narrow down the unknown and be better prepared.  If Jaylan had Trisomy, she would be here to hold my hand during delivery and give me the support and love that I needed.  If it was mostly structural for Jaylan, she recommended me delivering at UAMS so a team of interventionalists could be on standby.  Have I mentioned yet that I believe I have the best doctor ever??  She gave me her personal number and told me to call her at anytime and that she would be praying for me.  It's a wonderful thing to have a doctor that knows the power of prayer.

A SIGN
One night I asked Raghan if she said her prayers.  She said yes.  I asked her what she prayed about and in her words she said "I asked God to help me in school, and I told Him I love my family and Oh I didn't say this out loud but I thought it, I thought God please don't let the baby die."  My heartbeat stopped.  I said "Raghan why would you say that?  Why would you think the baby was going to die?"  At this point Raghan hadn't been told ANYTHING about Jaylan, not even that she had cleft lip and palate.  She said, "because don't babies die sometimes?  Didn't we see that on Oprah, didn't her baby die?"  I said yes her baby did die.  Sometimes babies do die because God wants the babies in heaven with Him. Why don't you just make sure you pray each night that Jaylan is a healthy baby."  It was in that moment that I realized, God was preparing her for what was to come.  In her own little mind and in her own little reality she was being prepared.  My heart was broke.

My amnio was scheduled for six weeks later during a prescheduled appointment because UAMS was too booked up to fit me in earlier.  This meant that I would be cutting it close and getting my amnio just six weeks before my due date and then waiting two weeks for results.  In the meantime, we continued to pray for God's will to happen in our lives and Jaylan's while consistently praying for His strength and preparation for us.  God is good. 

Hurdle #4
On June 15th we went for our amnio at UAMS.  Once again we met with a tech who did the US and than afterwards with Dr. Dajani except this time another doctor came in with her and I didn't catch his name.    Lori, the counselor also came in.  Dr. Dajani requested the cardiologist's report from ACH.  They asked me about my appointment with Dr. Buss and I explained everything to them.  They read the report in silence.  And then she proceeded with her own US and looked at the cleft in silence and then the heart in silence.  She explained to me that Jaylan only weighed 4.2 lbs and was three weeks behind in her weight which wasn't "uncommon" for babies with chromosome syndromes.  Just as she was finishing I asked her about getting the amnio.  She wasn't going to even mention it.  I feel like they did everything in their power to talk me out of it and I couldn't understand why.  She even asked me if it really mattered what the results would be and I told her yes it would because we had to prepare.  She advised me that they didn't normally do the amnios with patients so far along (I was 34 weeks at the time) and my water could easily break especially since I was in the middle of a contraction, in which she'd have to send me over to the hospital immediately to prepare me for delivery.  I have to honestly say it did make me a little nervous.  I told her we still wanted to do it and she excused herself to gather the supplies and material.  Once she left the male doctor reiterated the risks of the amnio with me being so far along.  I told him I still wanted to do it.  The amnio was painless and easy.  It only took about one minute and it was actually pretty cool to watch it on the US.  I opted for the quick results that I would receive after three days. She had Lori schedule me for induction at UAMS on July 11th.   That was 3 and a half weeks away.  I wasn't prepared for the moments to come to only be 3 and a half weeks away.

Hurdle #5
Once again I prayed and prayed for those next 3 days as we sat and waited.  Dr. J told me if I got the results on that following Monday, to call her at home because she would be off.  That Monday came and I hadn't heard anything so I emailed Lori.  She emailed me back and told me that Kate, the other counselor would be calling me shortly with the results.  And she did.  About 45 minutes later chipper Kate was on the other end of my phone telling me that my results did come back showing that Jaylan had Trisomy 13.  I calmly explained to her that I was no longer planning to deliver at UAMS and I knew that with Trisomy 13 she wouldn't have a quality of life so we didn't want any interventions performed on her.  She said that was fine and that she would let Dr. Dajani know. 

CURRENTLY...As our journey continues

There was that moment again in which my heartbeat stopped.  I found myself froze in midair as I tried to jump this hurdle #5.  The floodgates opened.  How could this sweet sweet baby have Trisomy 13.  She feels so normal inside of me, so strong and we already love her so much.  How could doctors tell me what her fate was going to be.  They couldn't.  I still believed that God had the final say so.  I prayed again that His will be done.  If it was His will to bring her back home to Him than we release her.  She was His to begin with, not ours, but oh how thankful I've been to carry her for these short weeks.  Oh how thankful I am to have the priviledge to feel her movements, to be able to talk to her and tell her how much I love her although she'll never tell me I love you back.  How thankful I am to have had the moments I've had with her.

Hurdle #6 - The hurdle I've truly been dreading...
On June 21st, we finally decided to sit down and break the news to Raghan.  It's so hard to give your child a sense of joy only to turn around and take that joy back.  I started off telling her that Jaylan was very sick and she may die.  The first thing she said was "Is that true??" and oh how I wish it wasn't.  I said "yes it is.  God can still heal her but we want you to be prepared that she may not be coming home."  She told me she was sad because she really wanted a baby sister.  She asked if she was going to be able to see her and I told her that daddy didn't want her too because she would have some things wrong with her face.  I asked her if she remember when we talked about how sometimes babies die and go to heaven to live with God.  She asked if Jaylan would be an angel and have wings, I told her yes.  She asked if they would be white, I told her yes and that she would probably watch over her.  She asked if she could dream about her, I said sure she probably would.  She asked how would she look and I told her she would be beautiful just like her except she would have wings.  She asked how did heaven look and if it was big white and fluffy, I told her probably and that it's gorgeous and I'm sure there'd be some gold up there.  She asked me how did I know and I told her because the bible says so.  I also told her that we would have to bury her and I think it would be a great idea if she wrote a letter to bury with her.  She said she didn't know what to write and I told her she could tell Jaylan that she missed her and loved her and to tell Jesus hi for her.  I also told her that she could release some balloons for Jaylan.  She said ok but that she was sad because she really wanted to be her big sister.  I told her she would still be her big sister, Jaylan would just be in heaven and one day when we went to heaven we would see her. 

This was hard but I praise God that Raghan took it so well.  Sometimes when I glance at her in the back seat and she's staring off somewhere deep in thought, I think about taking that joy away from her.  I wonder if she's thinking about Jaylan and I wonder how the burial will affect her.  I've definitely been praying that God comforts her as well and make His strength perfect for her weakness as well.  I don't want her to be as sad but more celebratory that God allowed her baby sister to be born.  God is good.

Since then, Raghan and I can talk about Jaylan and how she'll be well when she get to heaven.  She won't be sick and she'll have a great life up there with God.  She'll be happy and will be able to play and God will rock her.  It's a great thing to see Raghan smile about that.

Two and a half weeks until induction:
Time is flying and I'm still not ready.  I just want to keep Jaylan in my belly forever.  I'm going to miss her presence in my life, her movements, her jerks.  Oh how I love her.  Still praying for strength and peace.  You always know that burying a child is a possibility in life but it's not something that you can ever be ready for.  How will I walk away from her grave?  Will my legs move?  Will I be stuck?  How can I just leave her little precious body there?  There's so much to do with so little time.  She had a seizure a couple of weeks ago and it scared me crazy.  I'm 100% sure it was a seizure and then she got real still and I couldn't make her move.  It is common for Trisomy babies to have seizures due to their brain activity.  I realized then that I wasn't even close to being ready for this process, for THE moment.  She did start moving thankfully.  I know it's a possiblity that Jaylan can pass before she's born and there's an even bigger possibility that she will pass during the delivery because of the stress on her little body and heart.  My baby... However, at this point no one knows how long she'll live if she makes it through delivery.  Will she be able to take her first breath, will I hear her first cry, how will I react when I see her?  I'm beginning to have anxiety about the DAY.  I'm not ready now but I'm asking God to prepare me for the moment.

I am definitely thankful now for that OVERWHELMING moment because what I have learned is that that OVERWHELMING moment was preparing me for a different moment in my life.  Thankful.  God is good.