Saturday, February 26, 2011

Our Dear Friends and Continuing the Fight (David's and my own)

Thank you so much to everyone who has posted comments on our blog.  I want you all to know that I have received and read them.  But, I also need to tell you that I don't know how to respond to them just yet.  This blog thing is all new to me and I haven't had Aaron teach me that part yet.  Thank you so much to everyone who is praying for us.
The number one thing our family needs  right now is prayer.  You have no idea how many times I have felt strengthened or even hopeful for a moment, and I know in those moments it is God answering the prayers of those who are  able to lift them up for us, even when I can't pray for myself.
Thank you!  Thank you! Thank you!

To all of those who have contacted us and gone before us:  I know that every family that has been blessed with a Trisomy baby is a part of some plan that God has.  I don't understand it all and it hurts in a way that feels like it may never go away.  Yet, all of us have chosen to give these little lives into the hands of God and let him decide how many breaths our babies will take.  Thank you so much for those of you who've gone before and are reaching out to walk alongside of us in this journey.

THE PROBLEM

I know that for Trisomy 18 babies the doctors never recommend surgery.  I am hoping to find some parents that opted to have heart surgeries on there babies or doctors that have operated on these babies.  It seems there are no statistics or studies regarding surgeries or survival rates of surgeries or anything else with these children.  It seems so wrong to me that all the doctors keep saying that it isn't worth doing the surgeries because these children have short lives anyway.  They also tell us that the cost is too great considering these babies are not likely to survive long even with the surgery.  However, if your lungs slowly fill up with blood (which is what can happen to David because of his heart) and your breaths get shorter and you can not get enough oxygen, then it seems highly probably that a surgery could increase the quality of his life.  If that is true wouldn't it be worth it for him?  No matter how long his life is?  I am asking because I am really not sure.

Here is the real deal for Trisomy parents.  Our goal is to offer our children the most quality of life versus the quantity of days of life.  That is my goal as well, but I need to know we are making the most informed decision possible about all the interventions we will or will not ask for on behalf of our son with guidance of course coming from the Holy Spirit.
 The reason I am even considering the possibility of a surgery is because the doctor told us that every other one of David's organs looked great.  This is not always the case for these babies, and this could change at any moment because not all of David's organs are done growing until much later in the pregnancy.  If every other part of David's body inside looks great when he is ready to come into the world then it seems like we may want to think about helping his heart.

Tough choices are hard to make when they involve the most vulnerable of God's children.
Lord, please give us the discernment to know when to keep fighting with the doctors of David's behalf, and the strength to let go when you tell us it is time.  Father allow your voice to be louder than the breaking of our hearts and the pain of good-bye.  God please allow us to at least meet baby David.  Our hearts are for you to do a huge miracle through this child and show a complete healing, and give the unbelieving doctors a dose of the truth of you.  Lord let him defy all the odds, Father give him quality AND quantity of life.  But Lord in all of this not our will but yours be done.

There is one more piece of truth that I need to share.  I told God that I was afraid of what this loss would do to me mentally, emotionally and spiritually.  I confessed my fears to him that I would slip into depression (something the Lord delivered me from previously) or into some mental state that I would loose myself in and not recover from.  I confessed my fear that I would hate him for the loss and that I was afraid my heart would never heal.  I confessed that I was afraid I would never be the same person and it would be for the worst.

I understand what God has told me that he is going to do in the life of my girls and my husband in all this but I couldn't see anything positive to hold on to for myself.  God then gently reminded me that for the last year I had been asking him over and over to please help me get even deeper in my relationship with him than I have ever been before.

But God, I cried, my baby.

Yes, he responded.  First of all David is my child.  Secondly how else could I show you how to cling to me for EVERY thing EVERY day.  Also, I am revealing to you the idols in your life.

Broken, all I could do was confess that he was right.  Often I have put my children before my God, and admittedly this was an effective way for God to get my attention in every aspect of life.  I know that I have to grip to him as if my own life depends on it, because truthfully it does anyway and sometimes we forget that.
  

Seeing A New Perspective

February 26, 2011 3:29am


Tonight was another long night at work, blah, blah, blah.  Instead of relying on Mountain Dew or 5-Hour Energy to get me through the night. 
I went for a run.


There is something amazing that happens when you run.  Such a tank-filler.  


I spoke to my beautiful bride on my way to the track.  She shared with me how she was having trouble putting her hope into a miracle.  
"If He wanted to do it he could've".  


My heart, my lungs, my eyes - my whole being is hurting.  I love her so. We have grown closer in our marriage, our souls cannot be pulled apart.  Our communication has become very clear and healthier.  And yet, in this moment, I had zero words to comfort my wife.  


I know this sounds impossible from a man - but it actually was happening to me.  I was multi-tasking communication. 


Heather: "It's hard for me to have the hope..." 
Me (to Heather): "Hunny, I want to share my heart.  Where I stand in my prayers..." 
Me (to Holy Spirit): "I need words of hope, please give me the words to speak..." 
But to no avail.  Me (to Heather): "baby, I just don't have the words to speak right now"
the call ended.  I felt like such a failure.  A heavy burden was backpacking on me.


With this heavy weight pressing me, I took off, digging in at each turn.  


With a perfect breeze flowing by my face, I looked up to the sky.  It connected me to a trip I had taken to India. You see, I don't fly much - in fact that flight was my second - ever. When we took off, I remember taking out my mental camera and took lots of shots.  I recorded a little video clip as we lifted off the ground.  


When arose up over the clouds, I thought: 
"This is what we look like from His eyes."  I remember seeing the tiny little cars on the interstate, tiny little (huge) homes, and even smaller people walking on the street.


Then He made his move in me... "While I'm down there, the smallest details seem like the largest mountains.  
From up here, the largest mountains seem like the smallest details. 


So how much more should I trust in God.  
My worst-case is nothing more than a speck to the Almighty One."


I will always remember that.


After coming back to my senses from that flashback, I became drenched with peace.  


He's got us.  He knows what we can handle.  And He picked us to walk through this journey. None of this will go in vein...unless we allow it to.  These hurts, will be used to bless someone.  I have full confidence in that, because there have been so many people we have never known say "We are praying for your family, we walked through this, too."  God Blessed their hurts, by moving us, and giving me hope.  Thank you God for these folks who - heard your prompting and answered your call.  
We are so blessed to have people stretch out and say "this is so hard, and I know you don't know us, but..."


Confirmation that Tears of sadness, will turn to tears of support.
Then one day, I will wake up to tears of happiness - knowing 100% that my son will walk with the King of Kings.




After I left for India, my ladies found this to watch mid-way through my trip.


- Aaron's Journal Entry

Friday, February 25, 2011

Birthday Pancakes

February 25th, 2011 2:34am


FIRST A NEED TO VENT


I just got home from work.  Very exhausted physically, mentally, emotionally. I have anger in my heart for various reasons. I guess it just goes with the roller coaster.


I've had to work a lot of extra hours lately, and it's been tough for me to hear the stories from home, from my wife who needs me so much right now.  



I feel like a zombie trying to finish a rat race.  
As I typed a proposal for my company tonight, the words got jumbled up - I couldn't read them, or type them.  Sleep deprivation?  No, for this 1am exercise wasn't my first rodeo.  My thoughts run wild with visions of my wife and children at home, having dinner, bedtime stories, and those hugs and  kisses I treasure so much more now.



I'm hurting inside for my daughters, too.  Each one had a rough week with this new mountain.  I wish I was there when Destiny saw the images of Trisomy 18 at school.  I wish I was there when Lexi wrote in her journal with her school counselor.  I wish I was driving when Heather saw their big brown eyes full of tears, as she pulled up to their schools.


Seeing my lady's tears hurts this man's heart. 


My prayer: Lord, I am angry, I am sad, I am broken and helpless.  Father, my daughters cry to you for comfort, my Heather needs to trust in you, my boys need to see my leadership and my boy needs you to be the Great Physician that you are - Father God, be my strong tower in this storm, my rock to take refuge in, and my King to carry me through this battle - Lord, I haven't ask for this much since Christmas of 1986, but I know you will come through, just as you did then.  


Lord I am still remaining faithful that you can bring this miracle - 
I want nothing more than to have this baby with a full bill of health, so I can say to these doctor's "That's my Jesus!" 
I ask to keep my eyes on you with faith like a child, but Father not my Will, but your Will be done. I will walk with you, as you have promised to walk with me.
In Jesus name, Amen




Birthday Pancakes




3 of our children's birthday's are here - all within 7 days.  I have a routine I do for my wife and kids every birthday morning.  I make pancakes.  I light them with candles or sparklers, gather everyone else and we walk to the bed of the last person sleeping.

These thoughts have carried me through the days and nights this week.  

In those dark mornings, I know a smiling face awaits me, as I sing out of tune (sometimes a birthday rap, too) ...and for a moment the world sits still.

I look forward to these moments, just ask my wife - she grinned and bared through our first three years of birthday pancakes, till I finally remembered (she doesn't like them).  But she loved me enough to smile through each bite.  

I live for these moments, and can't wait to hang out with Mrs. Butterworth at 6am this next Monday, Tuesday, and Sunday mornings
.

Birthday Pancakes - just what the doctor ordered!  

Happy Birthday Joshua, Lexi, and Destiny!
video 

and for more of our birthday fun...

Thursday, February 24, 2011

Little Broken Hearts and a Husband That Put His Wife First

Yesterday was a tough day for the Haynes family.  We started out like every other day.  Got the kids loaded up to do the round robbin and drop the girls off at school.  We pray everyday in the car on the way, and the mornings prayers reminded me of the diagnosis of baby David.  Our oldest was going to start the prayer, the first thing that came out of her mouth was a prayer for our baby, that God would allow us to meet him and give us as much time, Destiny's words ended there and she burst out into tears and couldn't catch her breath enough to utter a single word more.  I held her had as I fought back my own tears and wrestled to swallow the lump in my throat and finished a prayer for Baby David.  Lexi, added what she had to say from the back seat and the prayer was done.  It didn't matter what words were spoke the heart cries of my girls were so much louder, deafening almost for a mother's ears.  My heart could hardly bear the breaking of theirs, as I waited for God to give me words of comfort for them.
"God", I thought.  "You need to give me some words to reassure them of how great you are in the midst of this". He didn't give me words for that.  Instead he told me to speak the truth to them.  So I did.
"It is okay to be sad, and it is okay to even be mad at God".  " I am and I told him that."  "But I know that in this situation God is trying to bring us closer to him and trying to help us learn how to be more like Christ."  " I don't know how this is going to do that, but I know if it were not then God would not be asking us to walk it."
Finally Destiny spoke, "I know but I just can't help but think of what might happen to him."  " I just don't want him to suffer."
"Me either", I said still fighting with the lump in my throat.  " And every time I think of that I pray and ask God to not let our baby suffer in his life or in the process of him passing."
"I told God I didn't want David to suffer and told me then I needed to ask him for that, so I have been".
Somehow we were able to pull ourselves together enough to make a joke about being all emotional and it was time for Destiny to get out of the car.  "Lord, I need you to show up so big for her because I know I can't heal what you can, and I can't get her through this, you have too."
Lexi proceeded to climb into the front seat as I was saying this silent prayer and we drove off to make the next stop.  Our conversation about David continued as I took Lexi to school.  " I agree with Daddy, we have real, real big babies so I am going to pray that he will be eight pounds."  "Your tummy looks like he is going to be big because it just popped out in the last two days.  Maybe that's because he is growing".
"Maybe", I said trying to convince myself she really could be right.
Alexis is beautiful at redirecting when the conversation gets to be too much, and she somehow knows how to bring it around to something positive when the reality of what "could be" gets too much.  Thank you Jesus for this nine year old full of hope.
The rest of the morning was a little challenging to say the least.  We had to go to the store, and Andrew threw up in the car on the way there and Joshua made a nice mess for me in his diaper.  Out of the car and straight into the store bathroom.
After our little adventure to the store is was home again, home again, jigedy jog.  Nap time FINALLY!! God was so gracious in allowing me a nap today instead of my afternoon God time.  He truly does know what we can handle.  After nap time we go and pick up the girls.
Lexi first today.  She hops in the car and shows me a notebook given to her from the school counselor.  This is my notebook for baby David.  "It's kinda like a journal, I go and see the lady (school guidance counselor) for 15 minutes in the morning and 15 minutes in the afternoon everyday."  " We talk about baby David, I feel like she is safe to talk to about it, but I don't really talk to my teacher about it".  "Here is what I wrote today, I  believe that David is going to be born a perfectly healthy baby and God is going to give him a normal long life".
What do I say to that?  Nothing, I couldn't say a word, all I could do was cry and ask Lexi if she also felt like she could talk to me and Aaron about the baby and she said of course.  Heavy sigh of relief through tears, and that darn lump in my throat has come back.  The tears in my eyes were dried and it was time for me to get out and go into Destiny's school to pick her up.
I walk into the front office and the first thing I see is Destiny in tears with a teacher talking to her.  I knew instantly what the tears were about.  I just didn't know what caused her to well up with the emotions at school.  She and a friend decided to look up Trisomy 18.  They saw pictures of babies with tubes in them and babies with abnormalities that were just too much for Destiny's little heart.  It must have felt for her like our second sonogram appointment when the diagnosis was confirmed.
I scooped her up with her belongings and walked her to the car, again fighting the tears so I could see.  Not much was said except what conditions David had and what he might look like.  We agreed that if she wanted or needed more information that she would come to us instead of looking it up at school.  Finally home we unloaded the car.
Once we got inside I realized that I had forgotten to make plans for a meal.  This was in addition to not cleaning the house during nap time which just made our house look like the toy boxes threw up in the living room.  I couldn't even focus through the chaos of the children and mess to think about a meal and it all became to much for me.  I was so overwhelmed, and I knew that Aaron would be working late so there would be no relief.  It was too much to bear with the emotions of the day.
I called Aaron and desperately tried to sound okay but he knew I had reached my threshold for the day.
"Do you need me to come home"?
Once again I completely lost it, "Yes, yes I do", "It's been a very emotional and rough day".
"I have one stop to make then I will be on my way."
I was so grateful to my husband for putting me, and our family first.  It meant so much to me, especially because I know that he is now about an entire day behind at work.  I know how stressful that can be for him. As I hung up the phone, just knowing that Aaron was on his way home, I began to be able to function somehow through the midst of the anxiety and emotions that just moments ago had overwhelmed me so much I couldn't even think.
Thank you Lord for my husband.  Please give us strength.

Monday, February 21, 2011

Acceptance

The first sonogram of your beautiful baby is always so exciting when your expecting.  It was no different for us when we went to find out if we were having a girl or a boy.  It's a boy declared the tech.  We were so excited to watch the newest addition to our family on that black and white screen.  He seemed to have so much personality already as he was kicking at the sonogram tech when she kept pushing on my tummy.  She even shook my tummy roughly to get the little guy to show the goods, that just seemed to aggravate him even more.  We wouldn't expect anything less from our children, after all look at the parents.
My excitement didn't change when they told me they had some concerns with an abnormality in the umbilical cord and possibly the heart but they weren't sure.  I knew that God had me and this baby in his hands and I wasn't going to worry until I knew I had to.  The range of what could be wrong was so wide, I had to trust God and the peace he had given me until they had more info.  No doom and gloom here, we are having another boy!
That was all on Friday.

Tuesday morning came like any other in the Haynes household, 10 minutes behind where we need to be and just walking in the door to feed the boys breakfast.  I felt proud that I had made a peanut butter and jelly sandwich in record time and was reveling in my sandwich making skills when the phone rang.
Nurse: Is this Mrs.Haynes
Me: Yes
Nurse: This is so and so from such and such midwives office calling with the results from your quad screen.
Me: Okay
Nurse: Well your baby tested negative for Downs Syndrome and (something else I couldn't pronounce)
Me: Great!
Nurse: But he did test positive for Trisomy-18
Me: (Still certain that everything would be fine) So what does that mean?
Nurse: Blah, Blah, Blah, medical terms
Me: Okay but what symptoms are associated with that, what does that mean for the baby.
Nurse: The prognosis isn't good.
Me: Okay but what are we talking about!
Nurse: Usually heart defects are associated with this.  These babies usually don't make it.
Me: (in disbelief that this was our babies fate) They don't usually make it through the pregnancy or life or what?
Nurse: Both.  This is a hard phone call to make.  I am so sorry.  You should still keep your appointment at Shands so they can give you more info.
Me: Okay
Nurse: Call us if you have any questions. Goodbye.

My immediate thought was to call Aaron at work and deliver the news, so I dialed the phone immediately and then when he answered all I could do was cry.  It must have taken me about two or three minutes to stop crying so hard that I could actually tell him what was wrong.  I finally got the words out and because he was at work we had to get off the phone.

My heart was breaking at the fate of our child as I researched and read every reputable site I could on Trisomy 18.  It was in this moment I began to be so mad at God.  I haven't ever been so mad at God as I became on the day of that phone call.  I couldn't even go to him for a word of comfort.  All I could do was think about the verse from Jeremiah that says "For I know the plans I have for you, plans to prosper you and not harm you".  Really, not harm me, how could this not harm me?  How was this not harming our unborn child?  What about our girls, what will the loss of a sibling do to their little hearts?  Especially Destiny, who is at such a pivotal point in her life where her faith is concerned.  She is being taught scripture and truth here at home, but not in her dad's house and she fights with the flesh daily.  Will this make her mad at God?   How could this prosper us in any way?
Over the next two days my anger just hung over my broken heart like the smog of a big city.  Finally after shear exhaustion, I gave in and allowed God to speak to the million pieces of my heart laid out before him.

God:  Maybe this experience is not about prospering you but prospering your baby (now named David Allen).  I gave him to you because I knew you would not abort this pregnancy.  I gave him to you so he could have life no matter how brief.  Look at this through the scope of eternity and not the minimal time that everyone has in the flesh.  David will walk with me in a perfect body that won't hinder him in any way, and because he will be so young you will never doubt that he is indeed with his father in heaven that loves him more than you ever could.  He is a blessed soul that will never have to struggle between the flesh and the spirit.  I loved him before I gave him to you and he is mine after all.

Me: Lord, but I want my baby to live and I want to shower him with love, and I don't want him to suffer! I don't want him to panic when his breaths grow short and his life slips away.  He won't understand what is happening.  I don't think I can walk through this, much less help our other children to.

God: You won't walk through this alone, and if you don't want him to suffer in life or in passing then ask me.  I  am going to establish Destiny firmly in Christ through this.  And David, MY David, will be with me.  There is rejoicing in his new body, and at my side.  Cling to me through this, and I will carry you.

Me: I will, but knowing what you have in store doesn't make this sting any less.  And just for the record, I am still a little mad at you, but I trust you.

God: If you didn't I couldn't bring you through this.  One day, one prayer at a time.  I love all my children including David.

-Heather's Journal Entry

Sunday, February 20, 2011

Trusting through Adversity

I heard a young preacher today talk about how easy it is to trust during good times, but real trust comes in times when we have no control.

I feel like such a hypocrite raising my hands and saying "yes Lord, I trust you" then finding myself running to the internet to seek out doctors, blogs, and research to try to do what I can do to save David.

The harsh findings all pointing to answers I'm not yet willing to accept.


We got a treadmill today, and after 3 hours of putting that haus together, I went for a run.

I stared at the wall in front of me in silence.  God heard my silence.  Then I felt the Holy Spirit running next to me in his green adidas track jacket.

During lap 5 he tackled me, we wrestled on the ground for a bit, then I gave in.  My tense body exhaled, I closed my eyes and felt at peace.

He winked at me and jogged away.

I got up, dusted myself off, and now I'm ready to run again.

Thank you Lord for this moment.
And thank you U.S. Presidents for that great sale on the treadmill.

Psalms 56:3

- Aaron's Journal Entry

Thursday, February 17, 2011

Telling Our Children

February 17, 2011


We have four beautiful children (and David on the way).
11, 8, 2, 1


Tonight was a hard night.  On our way home we prayed for Father God to go before us when we tell the girls, to give us words to speak, and to fill our home with an overwhelming peace.


Heather and I believed I would be the one to tell the girls, because she thought she would not be able to keep it together. When we gathered them, quite the opposite happened - I couldn't speak, and Heather delivered the news with Holy Spirit strength.  


About two sentences in I could see that it had begun to hit them.  We shed lots of tears tonight.


Tomorrow we are heading out of town to St. Augustine for some much needed rest and to process together as a family.




Father God, please keep me aware of my children's emotional needs, allow me to show my love to them, and give me words to strengthen their walk with you.


-Aaron's Journal Entry

Confirmation from the Specialist

February 17, 2011


Today we were transferred to the pediatric specialists from our mid wife.  We went through a thorough sonogram session, met with a genetic counselor, and NICU staff.  Emotionally spent.


It was very surreal sitting with doctors talking about our child's death, before we had ever even celebrated his life.


Confirmation came from the doctor "99% sure it's Trisomy 18".  He has a defect in his heart, and three other symptoms of the chromosome syndrome.  The good news is that he is confident David will be strong enough to survive the full term.  We are 20 weeks.


-Aaron's Journal Entry

His Name is David

February 15th, 2011
"As I made myself more familiar with Trisomy 18, I would think to myself the battle of David vs Goliath.  The more I suffered and prayed I started speaking the name David to God. Baby's with this syndrome have low birth weights.  My soul felt this was to be."


"He will be a little man with such a huge fight ahead of him."  


I told Heather my desire and she agreed.  Her brother's name is also David, and I know a couple of David's that have put their footprints on my life.  David he will be.


His middle name will be after my brother who has walked with me through alot, and was also considered to be a high-risk pregnancy.  


We are honored to use the names David Allen for our son. 


-Aaron

The Phone Call

February 15, 2011


Today Heather called my crying so hard she had to keep catching her breathe to speak.  She received the results from the blood work.


Our son was diagnosed with Trisomy 18.  I had never heard of this until she spoke those words to me.  She told me what this means to our son.  I couldn't speak.  I had to do research and found some stats that made me turn completely white.


Trisomy 18/Edward's Syndrome 
http://en.wikipedia.org/wiki/Edwards_syndrome
http://www.trisomy.org/

1 in 3,000 - 6,000 baby's are effected by the syndrome
If they survive full-term, 50% survival through the first week of life, of those survivors, 90% don't make it to 6 months, of those survivors, only 10% see their first birthday.  A success story - to become a 12 year old.  Boys are 3x more susceptible to mortality.


It's been a tough day.  Lord hear our cry.


- Journal Entry from Aaron 

The First Sonogram

February 11th, 2011
Today we had our first sonogram. It's a boy! Very excited.  The doctor's however have some concerns about our baby...some concerns with his heart and the umbilical cord.  We'll find out more after the blood work comes in.  Very exciting day! 
- Aaron's Journal Entry