Tuesday, November 16, 2010

What's the next step?

So, we had another conference with the doctors today (If you're not in the mood to be depressed, do not continue reading.) They have decided that her condition, whatever it is, fits into the neurological problem called "epileptic encephalopathy". They had decided this quite a while ago but it still doesn't say much about what the problem actually is. Still just some really rare brain problem that nobody knows much about. But now, if you want, you can say that's what "the problem" is. All the tests they're getting back still say everything is normal. However, they are now telling us to start thinking about the possibility, or probability, that she's not going to live. Every time she has an "episode" her respiration levels drop which in turn make her saturation levels drop. So they have to keep her on oxygen. Not a problem, lots of babies go home on oxygen. The problem is though, that she has to be on enough medication to "kind of" make the seizure type part of her episodes less severe but in order to do that the medication knocks her out enough that she has a harder time breathing on her own and they don't think they can find a happy medium enough to get her down to a little nasal cannula so we can take her home. So they have now left us with the decision of when to take her off the oxygen, or how fast or slow to wean her onto a nasal cannula, or whatever. The part that doesn't make sense to me is that she was on MORE medication than this a few weeks ago when she WAS just on a nasal cannula and she was doing fine (we should have just taken her home then.) So now I don't know what to think. Is it better for me to look at this little fact and keep hoping that she will do fine on a nasal cannula again? Or is that false hope and I just need to give in and decide that she is going to die? Or is doing that just like completely giving up on her? And if so, is that the right thing to do? Who knows. Right now my brain is just so tired and completely spinning. I have no idea how to think or feel. All I know is that I absolutely CANNOT bare to watch my child die and then have to look at her tiny perfect body laying in a casket. Oh, and then there is the worry of, where would we even bury her?! I have no idea where Logan and I are going to end up as life goes on! If this is going to be the case, I almost wish it wouldn't. Oh, and apparently Logan and I will also be seeing a genetic counselor to find out if it's even a good idea for us to have other kids. Obviously I want other kids!(It seems dumb to have to say "well I've been pregnant twice, given birth once, and have no living children!) But right now I just want to be able to keep the one I've got! What am I even supposed to think of all of this?! I just want my baby to be okay.

11 comments:

  1. Stay strong Sarah. Look at this amazing family you have surrounding you. We are all praying and rooting along, no matter what the next turn brings. Cadence is SO loved by all of us, and is so special in our hearts.

    Thank you for taking this time to keeps us updated. Imagine me hugging you...now.

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  2. Oh Sarah my heart breaks for you. I hope and pray that things will work out and you can find comfort and strength to get through this whatever the out come. I pray for sweet Cadence to get through this. Hugs to you, all three of you. You're in my prayers.

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  3. I am so sorry that you have to go through this. At least you know that no matter what happens you will see her again. You guys will be in my prayers.

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  4. I wish there was something I could write that would help, but I am at a total loss of words. Other than to reiterate what every one else has said. We are here for you and that beautiful little girl of yours. As Jenni said, try and stay strong and keep imagining the day when you guys can bring her home for good!

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  5. I know I can never understand what you are going through or how bad this hurts. Maybe you could think about going to a temple session you may find the answers you are seeking. I am so sorry your family is in your prayers as well.

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  6. Sarah, I am so sorry...I know that doesn't help at all, but I just want you to know that I think you are an awesome mother and I know that you will make it through all of this. I can't even imagine how you are feeling and I don't know what to say to try and help, because I am sure nothing helps. But I am hoping and praying for the best for you guys, because you deserve it! Cadance is beautiful!

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  7. I have no idea what to even tell you except it's in Gods hands and you have to know that he knows you and Logan and knows your heart and he will give you those children you want but it might be in a way you are not expecting. You were meant to be parents I know and feel that! Cadence will be with you forever this life is short thank goodness and she came and got her body and that means she will NEVER have to struggle with lifes problems and she will be yours FOREVER as long as you and Logan have faith and live the way you should. I am broken for you and Logan but I also know in my heart that Cadence will live forever with YOU and that is a very special thing Sarah! I love you and Logan and Cadence so much!!!

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  8. i am so sorry. that breaks my heart. My thoughts and prayers are with the both of you and little Cadence. Love you guys.

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  9. Sarah, thank you so much for taking time to share what's going on with Cadence, I know it must be hard. The Lord must have a lot of faith in the two of you to trust you with such a special and beautiful little girl. You are all in our prayers. Love you.

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  10. Sarah & Logan,
    My heart is aching with the confusion and sadness you two must be feeling. I'm sure there are so many things going through your head. Why us? Why her? This doesn't seem fair? What in the world are we supposed to do? What is the right thing to do?

    I have hard days where I picture myself attending my daughter's funeral and I just think about how I couldn't bear that! All of your questions and concerns are so real and serious. These questions just aren't meant for a sweet little family with their new baby. Somehow though, this lot has fallen upon you. I am truly sorry you have to go through this. What a difficult experience it must be for a new little family.

    My heart is full of sorrow for your family. Our family has been praying for you. We have been praying that you'll find the peace that you need.

    If you need to cry, vent, or just get away from the NICU you can visit us anytime. We're in room 4412 in ICS.

    Jill Hughes

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  11. I am so sorry. While Kyle was in WalMart tonight, he stopped and talked to Logan for a long time and tried to be there for him. I cannot imagine what this is like for you and Logan. Please know that we are seriously praying for your family. We feel so bad for you guys and have much sorrow in our hearts. Just as Jill said, we hope that you find the peace that you need at this time.

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