Tuesday, March 29, 2011

Update on our little guy...

The Facts:

First, I just want to give you the facts that we currently know (or have been told about Isaac).  Last Tuesday we learned that the type of Trisomy 13 that he has is NOT the kind that is inherited from one parent or the other.  The nurse proceeded to tell us that it was just “bad luck.”  While I do understand what she was saying, we know very well that it was not bad luck and that Isaac was handpicked for us and that he is made perfectly in God’s image.  My midwife called me that afternoon and told me that I had been on her mind and she would like to refer me to a specialist if I was interested.  I told her I was very interested and wanted all the resources I could get.  The office of the Maternal Fetal Medicine doctor (also known as Perinatologist) called me the next morning to set up an appointment for Friday.  At the appointment they did another sonogram.  I made sure that the ultrasound tech was aware of what Isaac had been diagnosed with because I didn’t want her to be surprised by all of his problems.  She told me she knew and gave me the most caring smile.  During the sonogram I was dreading hearing once again everything that is wrong with our baby, but she did not even mention one thing.  She would say “oh there are his legs, or I’m measuring his tummy now” just like I knew she would for a “normal” baby.  She took time to get some sweet 3D pictures of his perfect little face.  She made sure we already knew he was a boy and she said he was NOT being shy J.  The doctor came in and said he had looked over the sonogram and asked what we had been told so I told him briefly what we knew.  He said that the sonogram basically just confirmed all of that and that he didn’t think it was necessary to go over all that with us again (I was very thankful for that).  He asked if we knew our options (I could tell he didn’t want to say the word termination) and I told him that we wanted to continue the pregnancy.  He said ok and that it wouldn’t be mentioned again.  The doctor was very supportive of our decision and didn’t proceed to tell us all of the reasons it would be hard on us.  He said they would help us in planning each step of this difficult process.  He also reiterated that most babies with Trisomy 13 don’t make it to term.  I told him that I am not in denial and know that Isaac is very sick, but that I need to know as a Mommy and a nurse that I have done everything possible for my baby so I asked him if he thought any kind of surgery would be possible were Isaac to be born alive.  He told me that he is not a pediatric surgeon, but with all of the problems that Isaac has he has very serious doubts that any surgeon would attempt to operate on him.  He told me that I am being a wonderful Mommy by doing exactly what I am doing and that if he is born alive making sure Isaac is loved on and kept warm will be the most important thing.  Oh how I needed to hear that from a doctor.  While it is so heartbreaking to hear that your baby is so sick that there is nothing we can do for him, it was also good to have someone be honest with me and tell me that holding and loving my baby will be the best thing for him.  I can totally do that.  As of right now this is what they see going on with Isaac’s little body:

·        His brain and head are about 2 weeks behind in growth and his brain is not developing as it should.
·        He has hypoplastic left heart
·        He has a single umbilical artery
·        His kidneys (at least one of them) is dilated
·        He has an extra finger
·        He has a cleft lip

How are you….?

This is a question I get asked so frequently.  Many times people really want to know and other times people just don’t know what to say.  If you have asked me that question more than once you may have noticed that my answer is not always the same.  I try to be as honest as possible when answering that question and my answer is not always the same because “how I am doing’ varies from day to day or at times moment to moment.  Surprisingly, though I feel that overall I am doing very well.  Those of you who know me well know that I am a worrier by nature.  I am not what I would consider an “independent woman” and do not think of myself as being very strong.  How I have been able to find joy each day, sleep at night, and continue to eat is nothing short of the glory of God.  I literally feel his arms wrapped around me and an intense sense of peace in my heart.  Don’t get me wrong my heart aches so badly.  I want my baby boy to be healthy.  I want Kadynce to be able to play with her little brother.  I was so looking forward to bringing another baby home and all the excitement that comes along with that.  My heart longs for those things more than I can even describe so I definitely have my very, very sad moments.  But, I am trying my hardest not to mourn a baby that is still very much alive.  If Isaac does go to be with our Lord there will be plenty of time for that then.  I want to enjoy each moment I have with him as much as possible.  Many of you may be thinking “God still does miracles” or “The Lord can heal Isaac, you just have to have faith.”  I believe that 100%.  I don’t just believe that He CAN heal Isaac, I believe he WILL.  It just may not be on this side of Heaven.  Whether he does or doesn’t heal him on earth, we will praise Him just the same.  I have two dear friends that were very sick here on earth, but now have perfectly healthy bodies in Heaven and are worshipping our Lord with the angels.  What an incredible thought is that? 

Feeling loved:

Thank you all so much for your continued prayers and sweet notes of encouragement.  Please know that I read each word (many times over and over). I may not always have the time to respond to each one the way I would like, but they really do mean the world to me.  We definitely feel loved and I can’t thank you enough for that.  Instead of leaving a specific prayer list this time I want to just ask you to pray how you feel led to pray for us.  My mind and my heart want so many different things that many times I don’t even know how to pray.  Several people have reminded me that God already knows my heart, he created me.  He just wants us to talk to him and pour ourselves out to him.  So that's what we are continuing to do each day...            


  1. What incredible witnesses you are that our Lord is good ALL OF THE TIME! Little Isaac has, and will touch many lives no matter how long he is with you. I think of you often, and send prayers on your behalf. May you continue to feel wrapped in love & caring. Blessings!

  2. Kacie, I admire you both... your strength and courage are inspriring! Praying for your family!

  3. Kacie, you say you don't think of yourself as very strong,and I understand what you mean. Yet you are strong in the Lord. Paul said it well in 2Cor3:5 when he said, "Not that we are sufficient of ourselves to think of anything as being from ourselves, but our sufficiency is from God". The encouraging example that you and Jonathan are displaying is a testimony of the greatness of God's grace and strength. Love, Dwight and Dad

  4. Kacie, I am praying and will keep praying for you and your family. I pray mostly that you will continue to embrace this time that you have with little Isaac and that God will continue to comfort your hearts. Keep updating as much as possible... I love hearing about him!

  5. In your weakness, He is made strong. Be blessed
    -Kyle Saylors

  6. Oh Kacie, your words are such a comfort:-) and here i'm thinking that there is nothing I can say that will comfort you... You and Jon are such an awesome example for Brad and I, thank you....always praying, especially that God meets you and your needs exactly where you are:-)

  7. Kacie. I hope u don't mind me commenting here.
    my name I'd Tonya I live in Ohio a friend directed me to your blog. I am experiencing a similar pregnancy.
    I just wanted to say I know the roller coaster of emotions you're going through and I'm sorry < hugs>
    I have NOT given up my faith and hope yet and it gives me strength to see others who haven't yet too!
    God bless your family

  8. Kacie and Jon- we are praying for you often, and will continue to keep you in our thoughts. You know that we are always here for you!

    Justin & Allison