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...            

Tuesday, March 15, 2011

Isaac Preston

Then God said, “Take your son, your only son, whom you love—Isaac—and go to the region of Moriah. Sacrifice him there as a burnt offering on a mountain I will show you.” - Genesis 22:2

The angel of the LORD called to Abraham from heaven a second time 16 and said, “I swear by myself, declares the LORD, that because you have done this and have not withheld your son, your only son, 17 I will surely bless you and make your descendants as numerous as the stars in the sky and as the sand on the seashore. Your descendants will take possession of the cities of their enemies, 18 and through your offspring all nations on earth will be blessed, because you have obeyed me.” – Genesis 22:15-18

Just as the Lord called Abraham to offer his son to him as a sacrifice we believe that as parents we should always remember that our children are not ours. They are the Lord’s and it is not about the plan that we have for them, but it is about His plan. That is why we have chosen the name Isaac for our precious son. It is a reminder that his life, no matter how long or short it is here on earth is for the glory of the Lord.

Thank you for visiting our blog and for taking the time to read about this new journey that the Lord has placed before us. I will take a few moments to give you a little background on how we got to where we are now. We found out on Christmas Eve that we were expecting our second child. We were so excited! We have always wanted a big family and Kadynce would be about 22 months when the new baby would arrive. It just seemed perfect. Early in the pregnancy I learned that one of my hormone levels were low, but that this was a fairly common problem. They put me on supplements and the pregnancy seemed to progress normally. We opted to have what is called a “first screen” at 12 weeks. It is a combined ultrasound/blood test that tells you your risk for chromosomal defects. We did not have this test with Kadynce, but for some reason we decided that we would with this baby. Insurance would cover it and it was one extra time we would get to see our baby. The test, however did not go as planned. They saw a couple of things that seemed unusual and combined with the blood test it raised my risk quite a bit for having a child with Down’s Syndrome. While this came as a shock, Jonathan and I had peace and were prepared to do what ever was necessary for our baby. We opted out of an amniocentesis to conform any suspicions at that time, but we did agree to return in 3 weeks for another ultrasound. That brings us to this past Friday. To make a long story short there were multiple abnormalities immediately detected and the nurse as well as doctor began to suspect the possibility of Trisomy 18 or 13 instead of 21(Down’s Syndrome). They strongly suggested that we go ahead with the amnio so we would know exactly what we are dealing with and they informed us that if it is one of the suspected syndromes most of the babies do not make it to term. We decided to proceed with the amnio so we could be better educated, but told them that it would not effect our decision about carrying the baby to term or as far as he would make it. After a long weekend of waiting we got a phone call Monday afternoon telling us that our baby does indeed have Trisomy 13 and it is a little boy. We almost immediately decided that his name would be Isaac Preston (Preston is Jonathan’s middle name and we have always wanted it to be a part of our little boy’s name.) We will find out next week whether or not this was inherited from us. 97% of the time it is completely random (although we know no baby is random) and not inherited. They say this type of abnormality occurs about 1 in 10,000. Yes our sweet baby is so very special.

There are multiple very good websites that talk about Trisomy 13. www.livingwithtrisomy13.org is one of the best I have found. We are not in denial. We know that at this time the prognosis for Isaac is not good, but we also know that we serve a powerful and mighty God and that his will will be done in all of this.

Several of you have asked how you can specifically pray for us during this time. Here are a few requests that we have:

· That we will have a peace that surpasses all understanding. That our minds will not be filled with worry, but instead just an intense sense of peace.

· That our faith will remain strong and we will not doubt that our Lord is sovereign in all of this.
· That we will have wisdom. As the pregnancy progresses we will be faced with many tough decisions. We want to make the best decisions possible for baby Isaac as well as for our family as a whole. This may be very, very difficult and this is weighing so heavily on my mind right now.

· Most importantly that God’s glory will shine each and every day through our lives and the life of our Isaac.

Thank you much for your love and support through this. We love you all so much!