Friday, September 18, 2009

Update - September 17

So, do you want the good news or the bad news first? Good news? OK.

Lydia’s surgery went wonderfully. Since her breathing has never been very strong, the doctors were concerned that she might not come off the ventilator very easily. We were prepared to go into the hospital yesterday and give her a pep talk to start breathing on her own. When we got to the hospital, she was already off the vent, breathing with just the nasal cannula! She was also wide awake and looked at us when we said hello.

So, now the bad news. We met with the doctor and the geneticists yesterday and they have confirmed her diagnosis. Remember that one test I told you they were doing that I said we really, really didn’t want her to have? It’s called Zellweger Syndrome and that is what she has been officially diagnosed with.

Basically (in very simple terms because I honestly can’t understand a lot of it), it’s a genetic disorder that causes her cells to not be built correctly and it’s this that has caused the problems in her brain, the seizures, problems in her liver and eventually problems in her kidneys. If you really want to look into it, here’s an article you could read through (containing many words that are difficult to pronounce):

There is no known cure for Zellweger Syndrome. The prognosis for children with Zellweger is not good. The life expectancy for a child with this syndrome is anywhere from 2-18 months. It depends on the treatment plan we decide on with the doctor and pediatrician.

It’s pretty much the worst news we could have gotten yesterday. There was no small amount of weeping during the conversation (some of which was coming from our sweet nurse Pauline). But we were kind of prepared for it. A couple days ago, they told us it was in the same family as Zellweger if it wasn’t actually that. When we did some research, it was really the only thing that fit. God was getting us ready for it so it wouldn’t come as such and enormous shock to us. Of course, there’s no really being ready for it.

It’s amazing - I’m sitting here typing this and it’s not upsetting me because I honestly still cannot believe it’s really happening. Every word I type I say to myself, “ for them” and then I think, “Oh right...I’m ‘them.’” It’s intensely unreal.

We’re still planning to bring her home. The seven day reset for every breathing or seizure episode is now cancelled. The doctor understands that this is just how she’s going to be and since we have no idea how much time she has, we all want her home as soon as possible. We need to get the equipment and learn how to use it and then we’ll be able to bring her home.

We know you have been praying so faithfully and I really didn’t want to have to give you bad news. We wanted God to heal her - we wanted all those prayers to be answered. And He can still do that. We have faith that He can. But we are also accepting whatever it is He has ordained. Since the moment we found out I was pregnant, over and over we committed her into His hands, knowing that she never really belonged to us. For her to be in His hands is the safest place she can be and that is where we will continue to leave her.

Once she’s home and stable, we’re planning to have some kind of open house so that everyone who wants can come and meet our sweet girl so stay tuned for more updates and info on that.

Our love and thanks to you all for your continued support for our family.


  1. Jen & Micah -
    We are brokenhearted, and we share in your tears. I can only say what I have before...we love you, we are praying for you, and we are here for you if you need anything at all. Much love from us,
    Peter & Denise

  2. What can I say? Other than my heart aches for you...and it seems surreal to me, too. She has been one "prayed up" little girl, that's for we know that God has her in His sovereign hands. What better place to be?! Praying for you so much...and we continue to pray for God's loving will for sweet little Lydia. We love you guys!

  3. We are so sorry to hear this latest news. We will continue to pray that God will shower His love and peace, and strength on you in abundance! Thank you for sharing your heart with us. You have also given a great gift back to the Lord as you have trusted Him so faithfully. You are pleasing in His sight. And we love you! Please place a kiss on that sweet Lydia for me. love, kim (and dale)

  4. We are so sad to hear her diagnosis. We continue to pray for her healing! I have to tell you your faith astonishes me and I pray that it is bringing you comfort. I hope you can bring her home soon so you can enjoy your beautiful baby girl! Love, Amy and George Beaver

  5. I just finished praying for Lydia and for you both. May healing come as the Father wills it. God Bless you three! I commit to pray everyday for healing.

    Our love is with you,

    Shawn and Ashley

  6. My prayers continue for healing for your baby and for peace your family. She is beautiful, and I truly believe you have been blessed beyond measure. Even if it is to be for only a short while here on earth, as a Mom, I know the love you and Micah and Lydia share is forever, because it is of God, whose love is forever.