This is the story of our precious baby boy, who was diagnosed prenatally at
17 weeks with a fatal chromosome disorder called Trisomy 13. Although
Jonathan's condition is considered "not compatible with life", we desired to give
him every chance at life. Our prayer is that those who are touched by our story
are drawn to God, who is Life Himself. John 14:6

To start at the beginning of our story, click here.

9.30.2009

a few updates

"Researchers believe that about 95% of babies with Trisomy 13 are miscarried or stillborn."

we have made it 31 weeks!

yesterday, i went in for an appointment with my OB and i was pleasantly surprised with an ultrasound. it has been a few weeks now since we have seen jonathan, so i was very happy to see my little miracle on the screen. he was sleeping, but his little heart was beating regularly and his diaphragm was moving as if he was breathing. my OB explained that he was just "practicing" breathing for when he is born. she did a whole body scan and said that the main concern that she saw was still his kidneys. they are really, really large. but the good news is that there seemed to be a little more amniotic fluid today! an answered prayer! jonathan is also still breech, but we're still praying he will turn in time for delivery. he looked so good, like a perfect little angel. we even got a 3D picture of him "praying."

(profile of his face shows eye and nose pointing to the left, with both hands "clasped" up near his mouth. isn't this so sweet?)

we are starting to look towards an induction date the first week of november. we want to wait as long as we can, but i understand that in some cases it is better for both the mother's and the baby's health when the baby comes a bit sooner than the due date. my doctor and i are agreeing in prayer that we would like it to be very obvious to us that the time has come, whenever that may be. greg and i want to feel at peace about it. when this season comes and goes, there is no room for guilt, no room for regret. i sincerely appreciate having an OB who understands this and believes the same.

*****

updates:

peace
since i posted the blog "journey of faith, part two" (and i mean literally, hit the "publish post" button) i have experienced a great peace about everything. i'm sure it has a lot to do with all of your faithful prayers on our behalf. but i have a feeling it's mostly because i have truly surrendered what happens in the next few weeks to The One in Control. "by faith" i have been leaning back on God's promises to us and we know that God is not a liar. wow, if you have not tried this with any trial you may be experiencing and are in need of peace, i highly recommend it!

meeting with the social worker
directly after my disappointing OB appointment that i refer to in "journey of faith, part two", i went to meet with the birth center's social worker. it was very difficult for me to be in the birth center, especially since i was so discouraged with the way jonathan's heart had sounded that morning. i could barely talk without crying. it was almost too much. however, i got most of our questions about d-day answered. we've pretty much got our birth plan ready to execute and we feel confident that most if not all of our expectations will be met. it definitely makes me feel comfortable in our choice to deliver at this hospital, rather than in pensacola. i'm sure sacred heart in pensacola would be more than wonderful to us, but it will be nice to be closer to home, family, and friends.

photographs and keepsakes
i have received many, many messages about the importance of having a photographer capture every moment of jonathan's birth and life. we have lined up a photographer to be there, and in case she can't we have not one but two backups, including a photographer from the organization now i lay me down to sleep. we have also confirmed with the hospital our desire to keep any and all momentos from jonathan's birth as well as their cooperation with getting all the keepsakes we possibly can during our time with him, such as footprints, etc. thank you for your concern with this, and for your ideas on how to make memories of this time.

and finally...
one aspect of participating in the newspaper story that we did not really think through was the negative reaction. i really hate to bring this up, because the last thing i want to portray is that i'm more worried about the negative than the positive. i'm not. i'm actually trying to see the good in it! sure, we understood that not everyone would agree with our decision to carry jonathan. we just didn't imagine anyone would spew insults and hatred about it in the online comments following the story. (these comments have since been removed.) truly, i have nothing to say to these very few people because i know in my heart that we made the right decision. faith-based reasons aside, we are more than supported by our families and very experienced and skilled physicians about it. we have been assured that jonathan is not suffering and will not suffer in anyway by our decision. we have felt nothing but peace in our hearts about it. enough said.

sunday, the day the article came out, turned out to be a crazy day. so by the time kate went to bed that night i was exhausted, both mentally and physically. i spent some much needed quiet time praying and thinking about all that had come about because of the news article. i was incredibly thankful for all the support but i knew i needed a godly perspective about the negativity. i didn't want just a few negative comments out of the many, many supportive comments to steal my joy. so i gave it all to God and asked Him to teach me something about it.

during this quiet time, the concept of persecution popped into my mind. it was something i had never thought about before. i have always thought of religious persecution as being tortured or killed for following Christ, and that it was mostly experienced by people whose faith is much greater than mine. but i found it simply means any kind of oppression or harrassment because of faith or beliefs. i am not saying here that we are experiencing persecution on some grand level or anything, but only that i should have prepared myself a little better for the discomfort associated with the personal attacks levied against us and our faith. afterall, God warns us that it is coming:

"In fact, everyone who wants to live a godly life in Christ Jesus will be persecuted" ~2 Timothy 3:12

however, there is a blessing that comes with it:

"Blessed are you when people insult you, persecute you and falsely say all kinds of evil against you because of [Jesus]. Rejoice and be glad, because great is your reward in heaven, for in the same way they persecuted the prophets who were before you." ~Matthew 5:11-13

as well as these commands:

"But I tell you: Love your enemies and pray for those who persecute you" ~Matthew 5:44
"Bless those who persecute you; bless and do not curse." ~Romans 12:14

and finally, a reason to delight in it:

"That is why, for Christ's sake, I delight in weaknesses, in insults, in hardships, in persecutions, in difficulties. For when I am weak, then I am strong." ~2 Corinthians 12:10

isn't this wonderful? what have we to be afraid of? if anything, this just is another way God is showing us that we have made the right decision. if these personal attacks had not happened, i would not have learned this lesson. thank you Lord that You have taken something difficult and uncomfortable and given me more strength through it.

bless all of you who are reading this.

25 comments:

  1. My name is Amanda, and a friend of ours told us about this website, and so I started to follow along. Just know that my husband and I are both praying for Jonathan and your entire family. We are praying for miracles. Your story is inspiring and encouraging. I love what God laid on your heart about the negative comments, and the scripture you posted! God is being glorified through your experiance!! Praise the Lord!!! With Prayers and Love, Bill and Amanda Pitts

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  2. Hello Jonathan parents, thanks for publishing this blog. This is the first time I have heard of Trisomy 13. I am not in your shoe, but as a parent, I do want to be as "selfish" as I can when it comes to holding my kids and giving then all the love and protection I possibly can. My heart goes out to everyone whose life has been touched by baby Jonathan. I admire you for being so strong. Thank you and god bless.

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  3. God Bless you Lauren ...you sound like a born again Christian...I know this may sound harsh..but are you accepting the doctors report about your precious little baby or by faith beleiving what God says in the Bible... have you asked the Lord how He sees your son? In 1 Peter 2:24 it says by Jesus's stripes we were healed ...When I have been at my lowest point I have called this ministry in Colorado Springs..Andrew Wommack...the prayer line is a major blessing..If you are interested..the number is 719 635-1111 Love you in Jesus, Marjorie

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  4. Hi Lauren and Greg,
    I want you to know how proud I am of you both. I also know that God is very very proud of both of you. What you are doing is not easy but I know from experience that you will not regret the decision you have made. My wife and I also lost a baby right at birth. We too after seeking the Lords will for us decided to carry on with a pregnancy after finding out our first son would not survive once he was born. Know that we are praying for you and your family. May God continue to keep you both strong. It would be great to meet you if the Lord allows. I am sure we would have much to talk about. God Bless you both.

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  5. thanks for the new post, lauren. love you so much. unbelievable photo of jonathan. i love it. what a sweet blessing. ~lindy

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  6. cherish every moment you have to spend with jonathan my husband and i lost our first child at birth and was not prepared and aware of spending time with her i regret that to this day that was two years ago also i was given this book called empty arms that was great nice read before the baby is born wish the best

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  7. Someone who knows you directed me to your blog. What a blessing you are as you go through this difficult time of trial. I am praying for you and little Jonathan. God had Jonathan's life in his full view long before his life ever began. He is in God's perfect will. I pray the Lord blesses you with comfort and peace. I pray that he gives you the peace that surpasses understanding. That's what is needed in times like these. Those negative comments were only fiery darts thrown by the enemy who uses others to hurt and persecute us. In carrying Jonathan you have obeyed God by defending LIFE. Our society has limited understanding about that these days, unfortunately. But God is blessing you in ways that can't even be comprehended right now in this lifetime. I just wanted to send a bit of encouragement your way.

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  8. I am so thankful that I was directed to your story and your blog. You are an inspiration to me, and I pray for you and your family. This is a long journey, with lessons everyday.

    God is with you. And all of us are with you too, in prayer.

    Take care.
    Beth C.
    Ignore the criticisms.

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  9. I will be praying for you all and Jonathan. Thank you for the faithfulness you are showing to our Father. Thank you also for your honesty--you have challenged and encouraged me greatly. I wish I could offer some encouragement or insight, but all I can do is agree with and by humbled by the truth and depth that God is revealing to you. Your son--and you--truly glorify God! May our Lord continue to comfort and hold you all close to Himself as you walk this journey. 2 Cor. 1:1-11

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  10. Thank you so much for sharing your story. Thank you for sharing Jonathan and allowing me to "know" him through you. His latest picture is great. I am a grandmother of a 3 yr. old grandson and as I'm reading this I am crying. My heart is so full of love and heavy with sorrow and sadness. The love that you and your family have for Jonathan is evident as you tell your story. The sorrow and sadness you are feeling is because you will not see Jonathan grow to know the Lord and into the wonderful person he would be. Remember, children are a gift from God no matter how long we have them in our lives! You made reference to Jonathan that you felt guilty while planning his funeral. He kept reminding you that, "I'm still right here with you." You won't always be able to see him, but you know he will be right there with you, just like Christ is right here with us. They will both be in our hearts and very close to us! Jonathan will be one of Gods beautiful angels looking down on his family lovingly and will always "still be right here with you!" May the Lord Bless You and Your Family and keep you safe and in his will. You are in my prayers, always.

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  11. I am praying for you, your husband and family. I do believe in God's miracle working power and the word says, "Who's report will we believe, we will believe the report of the Lord." Jesus died for Jonathan's healing over 2000 years ago and the same healing power He healed with is still working today, He even said "And greater works shall you do because I go unto my father." I believe the Lord can give little Jonathan a miracle, and this miracle will profess to the healing of our Lord and Savior. Begin reading ALL the healing scriptures you can find and claim them for your unborn son. Read these scriptures directly to Jonathan in your womb. Decree that Jonathan will be born healthy and whole, that no weapon formed against him will prosper. The Lord says He wants above all things that we prosper and be in health even as our soul prospers! Begin to read and profess healing over your unborn son and stand in faith that the Lord will accomplish everything is was set out to do. Decree healing over Jonathan with the powerful word of God, His word is alive and the spoken word is alive. Let your faith rise as you read every healing scripture you can find and insert Jonathan's name in the scripture. Do this and thank God for healing Jonathan and giving his a long, healthy life. I decree, in the name of Jesus, that Jonathan will live and declare the works of the Lord. Jonathan will live and not die. Pray God's word will not return unto Him void and believe that "Greater Works" will be done through the LIFE of Jonathan. I pray every cell in his body come in line with the word of God. Every organ in his body function perfectly as God's word declares! It is God's will that he live and be a testimony of God's healing power! God is able to do exceedingly, abundantly above ALL that we could ever ask or think! He is a God that never changes and what He did when He walked this earth, He will do today! God Bless!

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  12. Lauren-
    Just checked in to see how things are going and have been praying for you lately. It was good to talk with you last week. The article is beautiful. Sending many prayers for you!
    Blessings,
    Gayly

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  13. Dear Lauren and Greg,

    I have posted a link to your blog on Facebook so that all my friends can follow your story. It is one of tremendous faith, love and beauty and is sacred testimony for all those who seek his will in their lives. Just as I pray for my own daughter each day, I pray for you, for Greg, and for Jonathan and Kate.

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  14. To Baby Jonathan's parents Read your story in the Sunday paper and I had to write to you. My prayers are with you all as you go through this. What amazing faith you have as you go through this wonderful but sad time. I have never heard of trisomy 13. I lost a baby at 16 weeks and had to have a d&c because the baby would not miscarry. I would do the same as you are. Some people like to make you feel like you are making the wrong decision of carrying Jonathan only to lose him when he's born. It's only because they don't have true faith in GOD like you do be strong and kiss that little blessing for us all when he is born and know you have many people behind you GOd bless and many hugs to you and your family

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  15. how could anyone have anything negative to say about you wanting to carry your baby to term .. i was recently fired for speaking my mind about a woman who chose to have multiples knowing she was going to terminate 4 of the 5 she later chose to keep them but after an ifection gave birth at 21 weeks none of the babies survived i now have had calls about how i should have kept my mouth shut becase this woman would have had at least one baby... i still side with my pro life veiws and i agree that god gave life and only he should take it away Jonathan is so lucky to have you and your husband as his parents he is verry loved and you are very strong parents.. bless you and your family how dare anyone look down on a person for giving there child life ... nomatter how long or short that life may be every baby deserves to be held and loved

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  16. Hi Lauren,

    I have been following your story for a few weeks now, Brooke Koski (McGee) sent me to the blog. I’m so sorry for what you, Greg, Kate and your family are going through, it breaks my heart. I have found your strength in your faith absolutely amazing and wonderful. I am so glad you are doing this blog. I know it is already helping you but I think it will help even more in the days, weeks, months and years to come. After reading your last post about getting things together and planned for d-day, I thought about something I want you to have. There is a lady here in Huntsville that does these little beautiful pillows, she embroiders the baby’s name and date and then prints the actual size of the baby’s footprints on the pillow. You send her this form with a copy of his footprints and the actual size of them. It’s really a beautiful pillow. She does them out of the kindness of her heart. Her name is Karen, she is an amazing lady. Her website is www.cherishsoles.com I have already told her about you and gave her the link to your blog. I have the form for you but can’t attach it. You can either contact Karen from her site or shoot me an email and I’ll be happy to send you the form and talk with you some. You guys will forever be in my heart, thoughts and prayers. Love you, Trudi (trudi527@gmail.com)

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  17. ~My heart is with you during this difficult time. I too am the mother of a Trisomy 13 baby---he lived for 8 days and I don't regret a minute of my time with him. I have a blog about our journey together from the beginning of my pregnancy before I knew of his T13---up to the present. I had a photographer do some prenatal photos, as well as a photoshoot in the NICU and his final day. Many will wonder why I would want these photos, but it's not their opinion that matters. My heart feels nothing but love and peace for having this experience. I will be keeping you all in my thoughts and prayers as you wait to hold precious Jonathan in your everloving arms.

    Love, Peace, & Nimkee blessings....Melissa

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  18. I just learned of your story and have posted your link on my facebook page for all to read. I am inspired and awed by your faith and committment and courage. This road that you are walking is not easy. I cannot imagine what you and your family is going through. I can only offer my prayers and support as a fellow Christ-follower. I will continue to pray for you daily and read your posts. I will be a silent friend as you go through this experience of a lifetime.

    What an amazing gift you have been given! To feel the hiccups and movements of your child, to hold him and nurture him 24 hours a day. I loved carrying my three children and remember them wiggling around and poking their arms and feet into my ribs.

    Jonathan's life's goal is to give God the glory, through his life and through his death. Isn't that what we all desire as Christ-followers? Kudos to you and your family for recognizing this goal before it was too late. To God be the glory for the things He has done!

    In Christ's love and service,
    Stacy

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  19. I came across your story in the AFA newsletter and was touched by your ongoing experiences. I first want to express to you, that I believe in God's healing in addition to his mercy. I know it takes so much strength to prepare for the worst, but please don't discount a miracle. I was viewing the Living with T-13 site and was moved to tears realizing that it is not necessarily a death sentance (which was the impression I had gotten through your blog- please don't be offended)
    I pray that God gives your Jonathan as long of a life as He sees fit and that the prognosis is generous, if not miraculous, for your benefit. I ask for His healing of Jonathan, both of you- as his parents, and for his big sister Kate, that she not feel overshadowed or otherwise negatively about her position in your life or God's love. Please let me elaborate on why I ask this last request in God's name...
    My husband was married previously, and lost his first daughter to a congenital heart defect several hours after birth. After her death and the failure of his first marriage, he and I met and married 10 years later. In addition to my son from a previous marriage, we now have added 3 beautiful daughters (ages 12,11&8) that know about their "angel" sister. At the age of 7 or 8, our oldest daughter mentioned she heard someone say about "some babies that were so special that God wanted them back with Him" and she was concerned she wasn't good enough because she was here with us. It was heartbreaking for me to try to make sure she understood that she was made in God's image and that she was "perfectly" who and what she was supposed to be and that He loved her just as much. In effect, a well-intentioned comment made by another had saddened and bothered her for days before she told me. I wouldn't want your Kate to feel that way.
    Well, in closing, we will be praying for you. God Bless you and your Family.

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  20. Dear Lauren and Greg,

    Keep up a strong faith as He will pull you through. I lost my only son at 3 months 15 days old. I will always remember him. My faith is what keeps me going. I know that my son is with God and that he is lucky to be there already. Someday we will meet again.

    In God's Hands,
    Kurt

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  21. Dear Greg, Lauren, and Kate,
    I have been very blessed by your story and want you to know that you are in my prayers. I pray for Jonathan to be a miracle, to show the doctors that despite all the odds against him that Jesus can still make him a very healthy boy. Jesus is not only our savior but also a healer and miracle worker. I also pray for comfort and peace for you all through this ordeal.
    Love in Christ,
    Tabitha

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  22. Dear Kate and Greg,
    I had a little girl, Katie, 17 years ago. Katie was born with Trisomy 18. God blessed me with no knowledge of this disease nor Katie's condition until she was born. We had Katie for 3 days, much of which was spent apart, due to Katie being life flighted to a larger hospital with an Neonatal ICU. I was not allowed to travel due to having an emergency c-section after a couple of days of induced labor.
    Unlike Jonathon's condition, Katie had excessive amniotic fluid which would not allow her to be born naturally. Katie had many visual signs of Trisomy 18. She had miniture nails, low birth weight and was born with rocking feet other than this she looked perfectly normal and healthy. Katie could not swallow, nor urinate. Katie's heart and lungs were underdeveloped, in great contradiction to numerous sonograms.
    I do not write all of this to sadden you. My heart cries out to you for what you have ahead of you.
    My dear husband and I held tight to each other and tried to comfort each other. We will celebrate our 25th anniversary on the 27th. We held tight to the blessing of our two older children. Our daughter who will be 21 on the 5th and our son who will be 24 on the 15th are beautiful, wonderful blessings. They had no birth defects and so amnio was advised against.
    One of my biggest regrets was not having any real pictures of Katie. We never even thought of taking a camera with us when we rushed to the hospital that Katie was in after I was released from the hospital. Thankfully, the ICU nursed had an instamatic type camera and took a picture of all of us with Katie.
    While I sat in the funeral home with Katie, I already regretted not having a really wonderful picture of just Katie. She was a beautiful baby with really dark hair. So PLEASE, when you have time with Jonathan, make a family member or friend be resposible for pictures. This will probably be the last thing on your mind.
    My prayer for you and your family is to have lots of wonderful time with Jonathan.
    If you would like to correspond or ask me questions, please write me at wanda@hal-comm.com
    God bless you and your family,
    Wanda Myers

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  23. First, I really agree with Sue from Maryland's comment above. I will be praying for Jonathan's healing and long life, according to the will of Almighty God. I will keep watching your blog to see how things go and how God works. HE is so amazing!
    When I read about your son praying and of your need for prayer, and I saw his picture praying, I KNEW: Jonathan is probably praying for you! His spirit is in tune with the Lord, he hears what is going on around you, and he feels your stress, heart beat, and happiness. He is praying for you, even as you pray for him. This is, indeed, a very special situation, and a very special little boy. You have many more people praying for you all now, especially for Jonathan. May God's perfect will be done and His Name glorified as you walk with Him and your special son. Praise God for allowing you to have this special time! May it help others to make a choice for LIFE, even in situations like yours. Thank you for being faithful to our Lord Jesus and to our Heavenly Father. May God bless you exceedingly.
    The Lord bless you and keep you; the Lord make His face to shine upon you and be merciful unto you; the Lord turn His face toward you and give you peace. Hallelujah!
    Many of the Psalms give great encouragenment; I am sure the Holy Spirit leads you. Go with God! I will be praying for you and watching God's perfect plan unfold. I love to watch Him work!

    Della Glenn
    Lawson, MO
    DellaJane@aol.com

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  24. You kind, kind people. How clearly you are reflecting the love of Christ to that little life the Master Craftsman is still perfecting. This is NOT a mistake, this is NOT an accident. Your Father is very evidently shaping, honing, polishing YOU BOTH to be tools of encouragement, comfort, and blessing - and challenge - to untold thousands upon thousands from every corner of the world, to whom you are a beautiful testimony.
    Here, in Estonia, where we operate the only Christian pregnancy crisis center (named "A Light In The City"), we will surely share your story with people facing an admitedly difficult choice.

    His strength to your hearts!
    Linden and Janice Viinalass
    A Light In The City
    Tartu, Estonia

    outahere

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  25. My heart is so full of love and admiration for this family. What Satan has tried to do in this family has turned out to be something the rest of the Christian community can draw from The bravery, love, commitment, and just doing something so unselfish, is a lesson to all of us. I will put you on my prayer list to pray for you daily. Again, God be with you.

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