The Last Prenatal Update

3:17 PM

Please be warned that this will be hard to read for many of you. And it's even harder for me to write. This will also be our last update before I go into labor. Before I begin, I do want to say a couple of things in response to a lot of messages I've been getting:

Ellie is not simply growth restricted. Growth restricted babies have great outcomes, for the most part. A lot of people have been sending me stories about babies born at 1 pound, etc and doing great. Before I go further, let me acknowledge that I sincerely appreciate that you think about us and that I realize the sole intention is to encourage us.

Now let me say just to clear the air that Ellie doesn't have purely a growth restriction but IS growth restricted DUE to an unknown syndrome/disorder. There is something going on with her body that is causing her to be growth restricted that has nothing to do with my placenta, umbilical cord blood flow, etc. The same goes with the arthrogryposis--which I did not make clear before. She has something else that is causing the arthrogryposis (ex. babies that are trisomy 18 (which is fatal) USUALLY have arthrogryposis, etc. Similar to how children with autism usually have distinct facial features.) They believe that they will be able to diagnose her when she is outside of the womb.

Again, before I go even further, let me just say that we do believe in miracles (still) and we do not live solely by the words of the physicians--but for the purposes of this post (and my brain) we are just going to tell you what they said and leave it at that. The reason for this is that these appointments are usually over 2 hours long. These posts take...maybe 10 minutes to read? So you can see that we're having to shrink down large amounts of information to pass along and we are trying really hard to make sure they are accurate reflections of our appointments. That being said, just know that there are a lot of details we just have to leave out if we don't want each post to be a novel.

So, in summary:
Ellie is not doing well, and we will no longer be going back for any appointments as there is no longer a point. They mentioned the possibility of inducing me (really sorry for this upcoming statement) but they believe that whether they induce or wait, the end result for her will be death--so the idea at this point is to do what's easiest for my body and to possibly allow labor for her to be less traumatic (no harsh contractions due to pitocin.) Also, if they induce me, they have to monitor me..and if they monitor me and see that she is doing poorly (which she is right now even outside of labor) they would need to do a c-section. This essentially means that if we choose to induce, we WILL end up with a c-section as they cannot be negligent. We also should mention that there is a chance she will not make it through labor due to the distress of labor on her body considering the state she is in. The other option is to have me wait to go into labor naturally and then not be monitored......again, so that I do not end up with a c-section. This doesn't mean that they won't monitor my health..it means that they will not monitor Ellie--because if they did..they would see medically that she needs to come out via c-section.

I hope that makes sense.

Essentially--their thoughts are that a c-section (at this point or in the future) will NOT increase her chances of survival..so if the end result is death for her, they want the easiest time for me. Induction and c-section would clearly be hard on my body...on top of everything else.

Please understand that all of the above came from both the doctor we really love and respect, as well as from the neonatologist that was brought in to talk with us about what happens after she is delivered. This came from them having monitored Ellie's progress and charts and measurements over the past few months as well as from their many years of experience.

Let me stop there and say that YES, we do still acknowledge that anything is possible with God and that He does indeed have the final say. We haven't randomly switched to living by the words of the doctors--our hope is in God and we clearly are still praying for a miracle.....we just want to be real honest with everyone.

The other thing we want to mention is one that I know people have varying opinions about--so know that we feel very strongly about it and it has been well thought through. We had to choose what we wanted to do post-birth if she makes it through delivery. There will be neonatologists on standby to do an assessment of her health. If her survival rate is close to zero (as they suspect it will be), we will not be putting her on a ventilator/life support/etc. We have chosen to do comfort care so that we can hold her and love her close to our bodies and not through an isolette with tubes running through her body.

IF the neonatal team suspects that her chances of survival would increase by stabilizing her--then yes, absolutely we will do whatever we need to do. But we are not going to stabilize her for the sake of keeping her alive long enough for people to see her, etc.

Alright, I don't think I can write anymore..we hope this is not extremely vague. Like I said, our appointments are very long.....

We WILL keep praying, we haven't given up...we also are trying to balance this with preparing to deal with what the doctor's believe is inevitable. I hope with every ounce of my being that I will be able to look back at this post and rant for hours about how wrong it all was......we're just telling you where it all stands at this moment.

Please don't stop praying for us. We desperately need strength and peace.

-C+J+E



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7 comments

  1. Jordan and Chris,

    I love you both so dearly. This post breaks my heart, but you two are so strong in God and in Love. I have never seen a couple so passionate and fearless in life. You will overcome any obstacle with that kind of love. And with that said, keep fighting the good fight.

    Love,

    Sarah

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  2. I was pregnant in 1997 and went through the entire pregnancy, 16 weeks to be exact, being told we had a fatal diagnosis and our baby would not survive past birth and possibly die before. Daniel was born 1/6/98 with an encephalocele, he had a hole in his skull and his brain was protruding from the back of his head. Daniel is now 15 years old. He is profound disabled, doesn't walk or talk, has had over 100+ surgeries. Against all odds from doctors and what we expected he is still here with us. God had a plan and continues to use Daniel as a testimony for His grace and mercy. This has not always been an easy journey. Carrying a baby that is not supposed to live has been one of the hardest things I ever went through. I understand your heartache. We would not change our journey, as difficult it has and can be. God has been awesome to us through many blessing and trials, but we are thankful. I will pray for you and your family as you are going through your journey. I pray God gives you the strength to endure whatever your outcome may be with your precious Ellie. We told our doctors if we only had 5 minutes with Daniel it would be ok, we wanted to give God the glory and continue with the pregnancy. Please feel free to contact me if you ever want to talk to someone who understands. Michelle J.
    mic1dan2@bellsouth.net

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  3. Jordan,

    I can't imagine the depths of your heartache right now, but I can guarantee that the peace, grace and strength from the God who made Ellie will continue to be as much as you need. I have been and will continue to be praying for both of you, but especially for your precious little girl. My hope is still to rejoice that you get to bring her home, but rejoicing that she's with Jesus will have a sweetness, too.

    Keep resting in Him!

    Love,
    Cori

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  4. Bless you for typing all of this out. The Lord has clearly given you grace for dealing with all of the comments and opinions. We lost our baby girl last year at 41 weeks and had a miscarriage at 12 weeks this year so I know words are very hard to come by sometimes. I'll be praying for all of the decisions you have to make. Decisions no parent should ever have to make. Praying for the Lord's peace that truly passes understanding. For wisdom only He can give and that you'll be able to make decisions that won't leave you with regret. Praying for your health and also for sweet Ellie and a miracle and for God to prepare your hearts for whatever is to come.

    love in Christ,
    Kate (friend of Kandace T.)

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  5. Jordan and Chris,

    I have known your family for a very long time and am best friends with Aunt Cathy and Chris's Mom. I experienced the loss of two children. One at 7 mos. and one full term that did not survive. As much as anyone can say they know what you are going through, no one realizes how difficult it is. My doctors explained to me that regardless of the outcome of the birth, this was in God's plan. I trust that. I have continued faith and I believe that. No matter how unfair this may seem, God has a plan for all of us. You will always love Ellie and please take time for your heart to heal. I will pray for you and your family for continued strength for you to endure whatever you face with your precious baby. God Bless You and Ellie.
    Bobbie Marsh
    robertamarsh@mac.com

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  6. Love and prayers from your friends and family down in Charleston. We all lifted Ellie (and her family) in prayer at Holy Cross this morning.

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  7. Know that we love you and continue to hold all three of you up before the throne as do the prayer teams from The Potter's Place.

    Shannon & Don

    ReplyDelete

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