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Friday, August 12, 2011

It is with much sadness that we write this entry today.  Avery is still doing well and we are looming closer to the next set of ALL CLEAR scans - not to worry....today we are sad for another reason.

We had our 2nd sonogram last Friday and some issues came up on the pictures.  We were referred to a Perinatologist for further tests and on Tuesday of this week we went in.  They performed a higher level sonogram with a more experienced technician and they were able to confirm that Baby C has a double cleft lip, which most likely means a cleft palate as well.  Devastating as it was hear that, we were in for a much worse diagnosis.  The Dr came in and indicated that not only did they see the cleft issues, but she was also seeing an enlarged gall bladder, kidneys and issues with the heart.  She also noted an additional finger on one of the hands and was unable to tell if the other hand had any concerns.   They did an amniocentisis to pull fluid from the uterus and sent it off for chromosome testing.  We knew at this point this wasn't a good thing and asked for the truth from the Dr.  She told us that with that many obvious issues on the sonogram we were most likely looking at a chromosome syndrome that was not survivable.

Yesterday the amniocentisis confirmed the Dr's suspicions and the baby was diagnosed with Patau's Syndrome.  The condition is not survivable.  It was also discovered that the baby is actually a Boy.  

Another one of those "worst things for a parent to hear/deal with" and believe us we are pros at this now.  It doesn't get any easier.  I am a day shy of 22 weeks and that in itself provides us ridiculous obstacles.  Our options were to wait until the baby passes and then have him removed, as most die prior to birth or within days after.  Or we could choose to terminate the pregnancy.  Our preference was to terminate as soon as possible to avoid further complications or to grow more attached.  However, in the state of KS there are laws that regulate when and how things like this could be done and we have missed the cutoff - medical reason or not.  Rather than go out of state for the procedure we have decided to have our Dr induce labor and I will deliver the baby in the next few days.  We will go through labor and push like normal, but because he is still so young he will not survive once out of the womb.

 This is absolutely devastating for us right now.  We are struggling to keep it together each day and we appreciate everyone giving us some space and time to absorb this ugly mess that we are once again finding ourselves in.  I am looking hard for the message or the reason or the purpose behind this and am coming up empty handed...It feels as if moving forward just isn't in the cards for this family and we are trying hard to not let that feeling get the best of us.   We'll get through it I know, but I am reminded with each kick that he is still there with me and that is a haunting feeling I don't think I will ever forget. 

Jenn

20 comments:

  1. Oh, Jenn! My prayers are with you and your family. What an extremely difficult thing. My heart goes to you. I found this quote in a book, "Jesus is a friend who walks in when the world has walked out." This verse followed that quote: John 16:33 "These things I have spoken unto you, that in Me ye might have peace. In the world ye shall have tribulation: but be of good cheer; I have overcome the world."

    ((((HUGS)))
    Becca

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  2. My thoughts and prayers are with you and your family also. No one really know what tomorrow will bring, so we must live one day at a time and just try to understand what is happening. Avery is there for you this time. This grandma has prayers for you all. Hope and pray all goes well for you. Take care and Hugs and Kisses to you all.

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  3. HI'm so incredibly sorry! Praying that Jesus wraps you all in his loving arms of comfort! Monica

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  4. I don't think anything anyone says or does can ever help lessen this pain, and I am so completely sorry for that. Know that you are in the thoughts of so many friends and relatives - near and far - and we hope you can find peace in time.

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  5. Jenn -

    I am so very devastated reading this. It breaks my heart that you have to make such awful decisions. We went through a similar situation with our 2nd baby boy and I hate more than anything that you have to experience this kind of pain. People would tell me, God has a reason, but it doesn't make it any easier hearing that at the time. If there is one person that could put a smile on your face when you didn't know it was possible, it's your sweet Avery. I am praying for you and your sweet little baby boy during this difficult time and am so very sorry you are having to go through this.

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  6. We have mutual friends on fb and we were asked to pray. After reading your post tears just streamed down my face. I want to ask why it's happening even tho we aren't supposed to. I can not imagine your pain but just the pain I feel for you in knowing whats happening is hard. I will pray for you and your family to have strength and comfort during this very hard time. I am so so sorry for what you are going thru.

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  7. Jenn-
    I don't even know what to say except I'm sorry. My thoughts and prayers are with you and your family. Take one day at a time, and you'll get through this.
    Natalie Giese

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  8. Words cannot express how much my heart is breaking for you as I read this. Prayers are on the way for you both as you make decisions and adjust to more changes in the coming weeks.

    Kellie Cobern

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  9. Praying for you and your family, Jenn.

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  10. Thinking of you. You have gone through the unimaginable only to be faced with a decision that no parent should encounter. I have you all in my prayers and hope for you all to find the message in all that God is giving you.

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  11. We are so sorry for all of you. Take care of each other. Praying for all of you in the days ahead. Keep your faith.
    Craig and Lucy Hough

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  12. Prayers, love, faith, and hope at this difficult time. So many people are praying for you and your family.

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  13. My thoughts are with all of you during this difficult time. I will continue to send prayers your way for strength and comfort for you and your family. May God bless all of you!
    Shelley (Olberding) Brown

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  14. I don't know what to say other than I love y'all,amd thinking and prayng for all of you. My heart is heavy as you have to endure this. Know that I am only a phone call away if you EVER need me.
    Brandi

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  15. praying....asking GODs blessings on all

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  16. Jenn and Jeremy, There are no words to convey the sorrow at hearing this news. Know that you are loved by many and we are all praying for you. My Grandmother always says it is the strongest ones that get the biggest challenges...i do not understand it, but it does seem to be the case and i know everyone will try to hold you up during this horrible time.
    Allison

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  17. Jennifer and Jeremy, Uncle Bob and I are devestated to learn of your loss of your beloved baby boy. We know not why these losses happen to families. Remember the love you have for your baby boy,and each other and Avery Anne. Remember and honor him in all things good and beautiful in your lives. Treat each other tenderly during this time of grief... (((hugs and tears))
    Love Auntie Lori and Uncle Bob (Maple Jo and BlackJack too)

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  18. Heartbreaking. No other words can describe this. Please know that we love you and pray for you. Truly heartbreaking.

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  19. You write: "It feels as if moving forward just isn't in the cards for this family and we are trying hard to not let that feeling get the best of us." I think your lives have been moving forward everyday. God is just not sending you in the direction you had hoped. Have peace in your hearts that he is sending you where you are meant to be. A prayer warrior.......

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  20. My heart is broken for your family. There are no words to say, except I am truly sorry.

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