Wednesday, August 31, 2011

A Heart that is Much Too Big

You'd think that having a big heart is a good thing, but of course that is figuratively speaking.
A heart that is too big means more love. More joy. More goodness.

It also means more burdens to bear. More weight to carry. More sorrow.

This of course is not what the doctor was referring to when we met with him this morning.
We were told that Finley's heart is much too big. It takes up over half of her tiny chest; it is supposed to be about 1/3 of that area. She is in heart failure.

Finley's heart is working extra hard to pump and she is slowly letting go. Her heart rate, which should be between 130 to 160, is only 101.
We were told that it could be a matter of days, weeks, or months. She might even make it to term. Even still, I should prepare for her "demise".

I was given the option to have an amniocentesis. This would allow for the doctors to know exactly what caused this and the chances of it happening in subsequent pregnancies. We could wait til the autopsy, but then we won't have "living cells" and the diagnosis would not be as accurate.

How am I supposed to decide what I want to do when you just told me that I should expect "fetal demise"?

I have so many questions, but they aren't questions that the doctor wants or expects to be asked. So who am I supposed to ask? Who knows how to get through something like this?

Will the nurses know that I am coming to labor and delivery to give birth to my dead child?
How am I supposed to get through the labor and recovery knowing that I won't be bringing her home?
Who will watch Eli and am I supposed to tell him one day about the sister he never had? Will he understand?
Where do you bury a baby?

If I think too much about it I get lost, so I try not to.

We will have to take it one day at a time. We will have to "wait and see".
We WILL keep praying.

Maybe I should be praying for peace now. I don't know.
I just know she is still alive right now. I hope she isn't suffering - is that possible in the womb?

Please continue to pray for us. The support and love that we have received is evidence of His hand working through this.

24 comments:

  1. Kelli, I'm so sorry to hear this news. My heart is just breaking for you. I wish I could say something to make it better but I know that's not possible. Big hugs to you, Daniel and Eli. :(

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  2. Oh Kelli! Please, ask you doctor about the hospital questions. The nueses should know, but talk to your doctor to make sure they will (and make Daniel talk to them first when you get there) ask her about recovery and grieving. She may have some advice or resources for you. As for Eli, I think you will know how you want to handle talking to him as he gets older and able to understand. Let your heart guide you. As for burying her, there are many many options. Do what feels most right to you, no matter what anyone else thinks. And I honestly honestly don't think she is suffering. I just hve to keep believing that for you both. I'm so full of love and sorrow and prayers for your whole family right now, and for a long time to come.

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  3. littlebeansmommy (JM)August 31, 2011 at 1:44 PM

    Kelli, your questions are so relevant and they are so hard to hear the answers to. Please feel free to message me on JM, I do have some answers, having been through this before. My heart goes out to you and your family during this time.

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  4. Kelli, it's Kim from JM Sept Due Date Club. I have not been active online for some time. When I first joined our DDC, I was immediately drawn to you for some unknown reason (not the creepy kind-promise). I have followed your story with Eli and now with Finley. I have no words for you other than that I am terribly sorry and that I, too, pray for peace for you, Daniel, Eli and Finley. All you can do is know that you are a good Mom and that God's hand is in this and, as you said in your previous post, he has chosen this journey for Finley. I know it seems unfair but, he has also chosen this journey for you, Daniel and Eli. The words and the answers will come to you when they are supposed to. They will come to you when they are right and when the timing is right. You don't have to know everything right now. Just know that peace is somewhere down this road for you and that you have done the only thing you can do--love your child. That is all any of us can do on any given day. I will hold you and your family in my prayers.

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  5. ((HUGS)) I'm sending you soooo many thoughts and prayers. I am so sorry that you are going through so much. I wish i had the words to say for you, i wish i had the answers to your questions. Eli will always know his sister and he will grow and share his families love for her. May ever moment with Finley be a blessing, and a moment you can hold onto and cherish and remember. I am praying for a miracle for her and your family, and i am praying as well for peace. love you!

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  6. My thoughts and prayers are with You and Your family. (Hug)

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  7. I came across the link to this blog from a fellow JM mommy. My name is Brittanie and my Cora was stillborn in May of 2006. While it was unexpected, I do think there are a lot of similarities. The hospital knew of my situation. I was scheduled to be induced after we confirmed her death, so all the staff knew my situation. Maybe you can make sure to have your doctor call up to the hospital to make sure everyone knows. We opted for cremation, because we were in Idaho only while Matt was in school, and I couldn't bear the thought of burying her and then moving. We spread her ashes in a place special to us. Many funeral homes do the actual services for free.

    As for telling Eli about her, well, you'll find a way. I had no other children when Cora died, but her younger sister (4 years) knows about her and talks about her, and her brother (2 1/2) is starting to recognize too. I've explained the best I can and I know eventually there will be more detailed questions. Just be honest.

    ((hugs)) Many thoughts and prayers coming your way during the coming days and weeks.

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  8. Praying praying praying. For peace, for understanding, for strength for you and Daniel.

    -jeanine

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  9. I have not stopped thinking about you.

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  10. Still praying for you and Finley! You are both on my mind

    -Nicole

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  11. Oh Kelli.. I am praying for you and your family. I am so sorry this is happening to you.
    Karina

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  12. Hi there, I'm a friend of Amanda Asbell's. How in the world you typed all that out I'll never know because you come across as very strong. I pray Our Lord holds you and your husband and little one in His arms. I pray that God's will be done and He may grant you all peace.

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  13. Enjoy and love your daughter today: Read to her. Sing to her. Dance with her. Everyday is a gift from God. May you have many more days with her. Prayers to you and your family.

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  14. Lifting you up in prayer tonight. Praying for the best possible outcome.

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  15. Kelli, I talked to your Mom Sunday and learned of problems with little Finley (I love her name). I am so sorry to hear this news, but I know you'll find the right answers to all your questions. I don't know really what to say to you other than I am praying God's hand will be guiding you through this. I experienced a miscarriage 3 months into my first pregnancy. It was devastating for me as we had tried for 2 years to get pregnant. Then two years later, we were blessed with twin girls, and 6years later, surprised with a little boy. I know God will watch over your sweet family and will help you get through all of this, but I know it will not be easy. I will be praying fervently every day for you, Daniel, Eli and sweet Finley. All my love, Allyson Merrill

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  16. Also another mom who saw this link via a JM friend ...

    I don't know if it helps at all to have strangers sending you words of encouragement, but if it does, please know that I am sending prayers, thoughts and everything good and positive ... I have tears in my eyes thinking of what a huge challenge this must be for you...

    Hugs to you and your family ... :-(

    SweetSimpleThings on JM

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  17. Ronnie and I are praying fervently for you all at this time. You and Daniel hold close to each other and love Finley every moment for as long as you have her. Remember, He is in charge and His will will be done. Praying for a miracle! Judy Beckwith

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  18. Kelli,
    This is noworries from JM. I know that when I went to the hospital to be induced when my Eli was stillborn, the nurses were aware that I was there to birth my dead baby and were very kind and compassionate. They had a picture on my door of a leaf with a raindrop on it to let all nurses know of the situation. Also, they had a grief counselor come and talk to me and my husband. She answered all the questions we had and even brought up stuff we hadn't thought about (like burial or cremation) and helped us talk through those things and contacted the cremation place once we decided on that. Like Brittanie said, a lot of places will do burial or cremation for free for you.
    My daughter was 20 months old when my son was stillborn. She is now 3.5 years old and talks about her little brother Eli who died and lives in heaven now.
    Like I said on JM, feel free to PM me, I will be happy to answer any questions I can.
    Most hospitals also have a grief group that you can attend afterward to help you through your grief. Look up SHARE or Compassionate Friends in your area if you are interested in attending a grief group.
    I am so sorry you are going through this, it's something no parent should ever have to go through. Allow yourself to grieve however you need to. And take as much time as you need to . Don't let anyone else tell you how you should be feeling or that you should be over it after a certain amount of time.

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  19. Kelli,
    You probably don't remember me from Harding, but we're Facebook friends, and your blog posts have been popping up on my feed. I am so heartbroken to hear about Finley, and I want you to know that I am praying every day for you and your family.
    Sarah Crouch

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  20. Hi Kelli, I don't know you, but I knew Whitey at Harding and I saw this blog post on his Facebook wall. I feel truly at a loss for words - I can't even begin to imagine what you guys are going through with this. Just know that you are all four covered in prayer.

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  21. Kelli...
    So much love and support surrounds you... I feel it is important to share with you this heart touching resource because Finley's birth, and your time with her is part of your family's story, and deserves to be preserved.
    http://www.nowilaymedowntosleep.org/about_us/
    With much love for your family, and trust in this Divine plan, though it breaks our hearts...
    Andrea

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  22. someone sent me a link to your blog and i just stopped by to say i was praying for you...

    with love,
    angie smith

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  23. I couldn't sleep until I wrote you. I live in Round Rock, TX and was toldnof you r most recent news. First, I am sorry. "Wait and see" is agonizing and has seemed unfair. I will give you my reply and then a place to read the story ofmy loss if you want to know more. I waited from 19 wks until 37 wondering and waiting for birth. That was aweful with glimpses of hope and then plunges of despair sometimes sentences later. I don't know you specific worries but I do understand loss if it comes to it. Lord willing, Finley will be safe. I remembering being really confused since my body felt like it should but was being told something very different during pregnancy. Nothing was more terrifying than birth, and how long it took to get the breathing tube down a tiny airway...I shook violently for hours in fear. You need support. Church, neighbors, family, friends; you need all of them. Learn quickly that people mean well, but say numb things that hurt even though they are trying to help. It might, help. You may learn also depending on your outcome how aweful the silence can be. That damn elephant in the room never seems to wanna leave. Conversations get ackward. You may wish at times you wore a shirt that says "my babe is really sick" or "I'm a dead baby mama" just so people will know why you are so darn sad still or so maybe someone will actually be brave and say her name or ask about her. I don't mean to scare but this is reality on the otherside. Grief is a funny guy, sneaks up and catches you off guard when you least expect it. Let yourself cry, laugh, be angry. The best thing I've done for myself is to embrace the emotions. I let myself feel how I need to even when it's inconvenient like in the middle of church service or a more recent extended family meal. It helps noone to hold it in, whatever you are feeling. I also prayfor those paying attention that they not be afraid to stop in and stay awhile to be present for whatever you need, on your time. Stay awhile, even in silence. Presence is usually good. Send cards, and please don't stop sending them after one month. Your life may not move on for awhile so I hope cards come for many months so you never feel forgotten, or your babe forgotten if "demise" is evident. We took advantage of Now I Lay Me Down To Sleep. Wonderful free service of photographers. Even if you don't want photos right away, cuz some people don't, I recomment it in case there is a day you change your mind and can't get time back. Tell your nurses when you first arrive so it's arranged. I did bury my babe. I love having a location where I can fall to my knees, cry openly, talk to my baby girl, and match her flowers to mine to feel connected. I also held a service. It felt right to me, maybe so ohers could see that she really existed, she was a person too and I needed her recognized. Many choose otherwise, that will depend how you feel. Lean in to God. He alone gave me stength when I ran out. Pray, give thanks if you can, find songs to renew. Again, I am sorry. (insert hug and hour of silence just to be present and available here). blog: mabeecolwell.weebly.com. My email: jcjoyful23@gmail.com. Feel free to use me, ask questions, vent. That goes for anyone reading this.

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