Elsie Noelle

6:22 AM

It seems the consensus amongst most of us is confusion, and I think that's absolutely fair. I wanted to just share a small bit of information--which is basically all I have.

The doctors with Ellie were sure this wouldn't happen again, and we don't blame them for believing so. There wouldn't have been any further testing they could have done unless we had brought in a geneticist to test Ellie further, but even then there wouldn't have been a guarantee that anything would have been found to let us know it could happen again. Plus, when this happens once, there is less reason to believe it could happen again.

The verdict so far is that this could be a lightning strikes twice sort of deal- a theory I am not comfortable with, and feel that it is much more likely that Chris and I are carriers for some sort of recessive trait that's causing this OR that it is solely something I am passing on.

If it's both of us, there should be a 25% chance with every pregnancy- a lottery I am not at all willing to play. If it's just me, it would be passed 100% of the time.

Elsie has almost all of the same traits that Ellie did minus the turned in/stiff hands and feet (so far as we can tell.) The main and lethal characteristic is her cerebellum which is much farther behind than her body (which is already far behind) and her recessed jaw.

Since Ellie's amniocentesis came back negative, we are opting out of doing another with Elsie..because they will be able to gather the same information after she is born and I don't have the energy to do that again and wait for results that do not change her outcome. We have decided that we want as little contact with the doctor's as possible-not because we don't respect them but rather that we cannot go in as frequently as we did with Ellie because it is far too exhausting and never made a difference. It feels as though we are hanging by a thread and I am not about pushing my limits. We will go in every 6 weeks or so, mainly to make sure everything is okay with my body.

Devastated isn't a strong enough word to describe how we feel--and I've never been more angry in my life. We will be praying for help, strength, and most of all mercy--but are comfortable with any prayers we can get. If you feel strong enough and able to pray for the miraculous, we surely will not stop you. At this point, I don't have it in me, but the important part is that I have faith that it's possible. I am okay with being selfish this time around and admitting I need help..and that I cannot intercede as often and as hardcore as I did with Ellie.

My personal prayers and thoughts seem to center around endurance more than anything. I find myself frequently thinking "I cannot be pregnant forever. I can only be pregnant about five more months at the most." I'm pretty sure I'm in survival mode. Ellie taught me that you cannot, in fact, die from a broken heart--so I have this weird and horrible confidence that I know I'm physically going to make it through this. (I wasn't always sure with Ellie because it was so new and fresh. I didn't actually think I was going to die, per say, but there wasn't much hope for life, if that makes sense.) But my confidence in the fact that I'm going to survive should not be mistaken for lack of pain or even strength for that matter.

You guys-we just don't know. And we're going to have to be okay with that for now.

I am deeply bonded to Elsie Noelle and I do not fear that I will unconsciously reject her for the sake of my sanity...but the relationship is quite complicated simply because I know what is to come.

The one thing I have held on to, and is still related to endurance, is the fact that relief did come upon Ellie's passing. Again, I am not hopeless and know that anything is possible, but the reality of the matter is I cannot afford to spend the next months investing in an outcome that I surely didn't experience last time. And again, this is where our community comes in--to pray for that if you feel able.

I may or may not write as much this time, I'm just not sure. We definitely won't have as many medical updates because we won't be going in as frequently.

Please, please, please--anybody you feel comfortable sharing us with..do. I've said this before and will probably say it a thousand more times, but we need as much support as possible.

My dearest Elsie,

You were loved before we even knew you existed, and the value of your life has never ever been lost on us. We prayed for you and waited for you and we are so thankful for your sweet life that surely is not over yet. You are a joy and a beauty and we are committed to being the best mom and dad we can be to you. We offer you everything we have to give. You are known and you are deeply deeply desired.

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  1. Oh Jordan-- you came to mind last night and when I read your update this morning-- my heart just broke. Please know that I am praying lots for you guys. ~Julie Jachens

  2. Jordan, I've only met you once years ago, but am friends with your sister-in-law Liz. I've kept up with your blog since hearing about Ellie. I'm heartbroken for you and Chris. I have a nephew with a terminal genetic disorder, had two miscarriages and dealt with a lot of fear over never having a healthy child....so I can relate ever so slightly with your pain. I'll be sharing your site asking for prayer and keeping you guys in my thoughts in prayers in the months to come.

  3. I absolutely love her middle name- beautiful! Again, all of you are in our prayers!

  4. I'm a friend of Tim's, y'all, and I wanted to tell you that I am praying for you! I am a carrier for what seems to be a similar genetic disorder and have gone through the scary geneticist lottery talks, both alone and with my husband. Y'all are so strong, and though my husband and I have decided to wait on the possibility of kids, just know you are surrounded by people with similar struggles that can support and pray for and love on you!

    Margaret Graton

  5. Beautifully said my sweet pea. I will share this on my blog today. My prayer has been for mercy as well because daddy and I are right where you are, unable to utter anything more. Love you and Chris so much.

  6. I meant I will share it on my fb page not blog. (I closed it for awhile)

  7. Jordan and Chris,

    Everyone who had walked through one of life's valleys knows - there is nothing that can take away the pain, nothing that will speed up the process, nothing that we can say that will change this like we wish. So we choose - to say words anyway, to sit in silence with you, to offer up our prayers for you, to love you in ways that we can. I cried as I read your heart-full-to-breaking post. This is your valley and you are trusting Jesus to see you through; and I am one more person with nothing but what I can offer in prayers of love for you and your family as you go forward.

    God's peace alone...

  8. Hey guys-
    I only hung out with you once at the Friedrich's, but since then I've been following your blog. I know I don't have the right words to say, but just know that there's a whole lot of love coming from Washington state right now and prayers will continue to be lifted up for you guys. Prayers surround this little nugget, you, and Chris. I'm so sorry for the hurt you must be feeling now.
    Peace +

  9. Lifting you up ... pleading for a miracle ... sharing with loved ones <3

  10. My heart breaks for you even though I don't know you. (I work at Shannon Forest.) I have a friend who gave birth to 3 stillborn or died within minutes. The heartache is so intense. I cannot even truly fathom. Your words are so beautiful and God will give you grace despite the pain. Donna

  11. I have just stumbled upon your blog through a loss momma friend, and I am so very sorry for the news you have received. I will be praying for your Elsie and you and your husband, praying God's sufficient grace over you as you face the challenging months ahead. Much love and peace to you, sister.

  12. You are obviously beautiful people, Jordan and Chris. I have only a fraction of understanding for what you're going through--as a grandfather of a beautiful little girl who could not survive outside the womb--but be assured of our heartfelt prayers, and of the utter reality of that "other world" that never ends where mothers and their children live together in utter happiness. If you do nothing else in your whole life other than giving life to that young princess who sits across from you at the marriage supper of the Lamb, you will have done an infinite and infinitely wonderful thing. There will be no regret at all in that day.

  13. Susan CernigliaroAug 7, 2014, 9:39:00 PM

    You are loved

  14. We have you in our prayers many times daily and are sharing with our family members asking that they join us in prayer for your sweet family.

  15. Hi Jordan, (Chris & Elsie Noelle). I'm acquainted with your sister Liz through Darlene a mutual friend. I saw this post on Liz's FB wall & I'm so glad I stopped by.
    I just want you to know that you are in my prayers (mine & my family's). I wouldn't dare say I understand the pain you've felt. Both my parents were carriers of a genetic cell disorder so both my brother & late sister were victims of the disorder. I watched my mother manage both my sibblings through gruelsome episodes in & out of hospitals only for her to pass years later.
    You are a BEAUTIFUL Mother! And I pray in earnest that The Living God, who raised Jesus to Life Everlasting, will open for you, Chris & Noelle a Door which no genetic disorder, or infirmity will EVER SHUT! I pray that Yahew who is FAITHFULNESS Himeslf & does not forget His Children (just like a mother with her child in the womb) will woo your family in Tender Love & grant you the MIRACLE of raising Elsie Noelle to His Glory through Christ Jesus! May your lives be a "showroom" of the POWER & MAJESTY of God! May all the Faithful marvel at what God has done for you. May you live to see your children's children (customary blessing in Nigeria). God bless you guys GREATLY!!! All My Love

  16. what happened?? last update on the blog was about baby clothes?

    1. Clearly what happened is that the last post was written before we found out that our child has a lethal condition?

      Maybe you meant to say "I'm sorry" ?

    2. No need to be unkind. There was a reference to an earlier post" in the blogpost, and when I looked to see what it was all I saw was a post about baby clothes. Thence the confusion. Maybe it was referring to a FB post or Twitter or email. Obviously I don't know you personally-- all I have to go by is what you post here. I will be praying for you and your baby & family

    3. My intent was not to be unkind, but rather to point out that your original comment was unnecessary despite any "confusion" you might have felt. I would hope that readers, whether they know me or not, would be able to gather what is happening here especially with a long succession of comments above yours who get it....reference to old posts or not.

      Maybe best to not post comments of that variety on such a painful post.

  17. (Clearly I'm not a blogger because I've tried to comment 3 times and I'm not sure you got any of them. But if you did you now know how crazy I am )

    Jordan, I want you to know how much your blogs have meant to me. I'm 21 wks and our little twin girl is not expected to survive. I've hungrily searched through your posts to see how you've felt and responded in your struggle... Like the well meaning friends who say "ask and you shall receive". As if I can take on that kind of burden...perhaps if I believed more I could get a miracle out of God... I'm angry and hurt by that sentiment. But your words have touched me in places I need healing , understanding, and perhaps the need to identify and to feel understood. Thank you, good and faithful servant... you will surely hear "well done" when you meet Jesus face to face.

    I am sorry dear sister. I am so sorry for the burden you carry.

    Love in Christ,

    1. Oh, Roxana.

      I apologize that I did not see this sooner. (After the comment above that makes me seem like a big jerk I decided to stay away from the comment area for a while. Goodness.) Sometimes the most helpful thing really is to know that others have been and ARE there now. There is a group on facebook called "Grieving with Hope" that's composed of only people (mostly or all mommas I think) who all have been there in one way or another. I've found it helpful in some of the darkest hours.

      We will be praying for YOU out of a place of deep deep deep understanding. There are no words. I so appreciate your words and my heart aches for you! You ARE going to survive this. Just keep breathing and keep loving on that little one inside you. She feels your love!

      <3 praying so hard.


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