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.


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.


  1. "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. "
    Oh, Heather - I can so relate to this....this is such truth. Continuing to pray for your family.

  2. Saw Jennifer Prior today...she told me she has spent some time with you. Thought about you often today and praying for you tonight as I read your words from my laptop. Love you, sweet friend. praying for his peace to flood your heart as only he can.

  3. Heather, I cannot wait to hear from you. I wish I knew of an easy way to contact people from the blog..when they post. I'm still learning :) My son Caleb will be 2 on the 20th of March. You contacted me through his blog so you know much of his story. I belong to an amazing group of tri families through facebook. We offer so much support, spiritually, emotionally, medically ,etc..throughout all stages of this journey. Almost all of Caleb's Dr's are at Shands and they treat him with the utmost respect. They are phenomenal. There is also a t13 mommy here. Her son was right next to Caleb in the NICU. I wish we could've been in contact sooner bc we just had an early bday party for Caleb with several tri families there. I am rambling..please contact me anytime God Bless, Jeannette