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A Neurology Update

I decided after my last post that I wanted my next post to be really "normal" and encouraging... happy family pictures maybe. And we are a happy family and I have many pictures I could post for that, but I'm sitting here in a quiet house looking at my baby girl and thought I'd give a quick update on our last neurology appointment, mainly to give some specific prayer requests. 

On Monday we saw our neurologist and she evaluated Eden for the first time since we left the NICU. I was hoping for an encouraging appointment, but sadly that wasn't the case. 

The cliff notes version is that she evaluated Eden's response to light and to tracking movement and she doesn't believe that Eden will be able to see. We won't know for sure for a few more months, but she expressed quite a bit of certainty regarding this (more certainty than I would have liked). She also checked her muscles and she believes that Eden is already showing signs of cerebral palsy because her muscles are quite tight. These things may seem relatively minor compared to her major diagnosis of microcephaly and lissencephaly, but it was still hard to hear. 

Additionally, she recommended that we begin palliative care for Eden. This is going to be a good thing because it will put one doctor in charge of all of Eden's care and this doctor will help to coordinate the other care that Eden receives. This is a hard thing because palliative care is for terminal patients... it's like hospice but for patients where the time limit is more uncertain. She was very concerned with how often Eden is aspirating and believes that she's at a pretty high risk for developing lung infections, which would likely be fatal for her. There is a medication that we could put her on to help dry up her secretions, but there are adverse side effects so I'm not sure that's a route we want to take. She also brought up again "end of life" care and that we'll need to think through our main goals in determining the care and interventions we decide to take for Eden. 

There's much more to this, but you can imagine why it was a hard appointment. 

Here are a few specific ways I'd love for you to pray for us and Eden:

  • Pray that we find a great palliative care doctor. Someone that will be helpful and honest, but also compassionate. 
  • Pray for us as we continue to monitor and manage Eden's secretions. 
  • Pray that we'll have wisdom and be able to care for Eden with excellency. Lots of things come up that I don't know how to handle- like today when there was blood surrounding her g-tube. It's all foreign, so please pray that we'll be given the wisdom and insight that we need. 
  • The cherry on the top of this is that we'd love for her to be able to smile- really smile. It would delight us and her adoring brothers. 
  • We'd also really love for her to see. I'd love for her to be able to see our faces and to see the world around her. We do know that she can hear, and I'm thankful that this is a way that we know we can connect with her- every day she hears that she is loved, that she is precious, and that's she's just the sweetest little thing. And we mean it, and I think she knows that we mean it. 
As I've said before, I really can't think about the future too much, but when I do and the dark clouds start to gather, I remind myself that that grief isn't for today. Today she is doing great, so today we can celebrate. For now we're going to hold her and enjoy her, her doting brothers will kiss her endlessly, we'll go for walks, play at the park, and be thankful for the blessings we have today. 


Some Random Thoughts on Grief and Grace

I know many of you are wondering how we're doing. And I wish I could answer that easily. 

On the one hand:

  • We are adjusting to caring for Eden. 
  • We are getting used to sleeping less. Really.  
  • I'm more relaxed about a messy house. 
  • We've had lots of wonderful meals brought to us (thank you!)
  • We are getting out of the house more and returning to some normalcy. I even took all 4 to the doctor the other day. We showed up a little late, and Josiah had no shoes on and only one sock but we made it. 
On the other hand:
  • This is hard and there's no end to that in sight. 
The same goes for Eden. On the one hand, she's doing great! But I'm not even sure what I mean when I say that; I guess I just mean that she's home, she's eating and sleeping, and nothing tragic or too frightening has happened yet. On the other hand, she struggles daily, sometimes hourly, with her secretions. She aspirates regularly, she sleeps sporadically (and her sleep is often interrupted because of the discomfort from the secretions pooling in her mouth), her g tube site is healing somewhat normally but has needed some extra tending to over the past days, and we're still trying to figure out how much food to give her and how often and over what length of time to help control her reflux (and it's a huge guessing game since the poor thing can't signal when she's hungry or full because we are artificially filling her belly). But we have made some strides in the past couple of days, and I'm thankful for that. 

So I weigh all of those things and feel like we still come out ahead. We're doing good. God is providing all that we need each day. 

I've been reading through 2 Corinthians regularly and in chapter 6, verse 10, Paul talks about being sorrowful, yet rejoicing. And I think that sums up our new reality. 

There is real rejoicing. We delight in Eden as our daughter. We enjoy her. I love to kiss her sweet cheeks and rub her little baby feet and legs. There is real celebration over her life. And there is real joy in knowing that God is in this for our good, that he has ordained this for our good, and that all of the suffering that we (and Eden) endure will be for our present and eternal joy.

There is still a lot of joy in our home. At any given time, you may find the boys jumping into piles of pillows with their bellies out or having a dance party in the living room. Luke provides almost constant entertainment for all of us as he's learning new words and phrases daily and has stepped right into his role as "little brother". The twins are constantly asking him to chase them or wrestle them or jump on the trampoline with them. He's delighted to join in on whatever escapades they are involved in, and the three of them have a good little thing going. They adore their little sister and are completely unaware that there is anything different about her. 

And Eden really is doing well- especially when you consider that the neonatologist in the NICU recommended that we make a DNR (do no resuscitate) plan before leaving the hospital, and the nurses recommended that we learn CPR right away, and that our home health nurse advised that we know where the nearest hospital is before we left for a family vacation. Basically every doctor or specialist we've seen has made us feel like our baby is a ticking bomb, but from our view she is doing so, so good! 

So why title this grief and grace? Because we're up to our ears in both, and it's seeming like that may be our new reality, some days leaning a little more heavily to one side or the other. 

There is so much grace! That there is still tons of laughter and JOY in our home is grace, grace, grace! That Eden is doing so well is grace! That we now feel like it's no big deal to suction her or hook a tube to her belly to feed her is grace! That we function pretty well on relatively little sleep is grace! We have all that we need every day- grace upon grace. 

And yet there is real sorrow, too. 

Many times when I hook the tube to Eden's tiny belly, my heart hurts because it's not supposed to be this way. Or when she wakes screaming because her mouth is full of saliva and she's scared and doesn't know what to do. (I think she's learned that it's not good to swallow, so she pools the secretions when she sleeps and sometimes they become too much for her and it seems to scare her). It scares me too and it makes my heart hurt. Or sometimes when I wake up and hear her breathing become high pitched and rapid, and I wonder if this is going to be the time when she just stops breathing and I fly out of bed to check on her. She's been fine every time, but I still return to bed and pray that God will help me not to worry about that day but to trust that he will be sufficient for that day, whether it's soon or years from now. 

So how do I wrap this up? We're okay to live with this tension. It's okay to live with a seemingly paradoxical set of emotions regarding Eden's life and disability, sorrowing and also rejoicing. I know many people (ourselves included) would like to just hear that we're fine and then put a nice little bow on that package and move on. This trial just isn't like that. 

But we know this isn't the final chapter- we live with this tension now, but one day it will be all joy. One day Eden will be freed from a broken body and a broken world, and she'll live in a perfect body, perfectly enjoying her God. And as Don reminded me early on, we'll have all of eternity to enjoy her as our daughter with no sorrow or grief or sadness. Lord, haste the day. 


On Eden and Glory

I've wanted to post more and have lots of jumbled thoughts on grief, grace, disability, and living a new normal, but whenever I have some free time (haha!) my pillow beckons me and I don't get around to writing the things I want to remember. 

So today I'm posting something that Don wrote the day that Eden had her surgery. He was helping me think through how God is using her life and the good that is coming of it, even if it ends up being short or marked by suffering. I'm posting this today mainly because I needed to remember this today.


Earlier today while Eden was having surgery Sara asked me how Eden's life is giving God glory. I did a little writing to clarify my own thoughts on this, and I thought I'd share it with you all. 

We can't and never will never know all that God means to accomplish in and through Eden's life. We see things from one little angle. We have a limited perspective. God is infinite in wisdom; he sees the whole picture with perfect clarity. "In his sight all things are open and manifest, his knowledge is infinite" WCF. His wisdom sometimes appears mysterious to us because we only see a small slice of reality.  So we can't know all that God is accomplishing. But we can know a little bit about what he's doing. We can know that he's glorifying himself in the following ways.

1) "For you know the grace of our Lord Jesus Christ, that though he was rich, yet for your sake he became poor, so that you by his poverty might become rich" (2 Cor. 8:9). Though he was rich, he became poor. This is the gospel. Sara and I are rich -- rich in health, rich in energy, rich in resources. Eden is poor. Our glad giving of our riches to care for the poor is a reflection of the gospel. That we didn't end Eden's life like the doctor wanted us to, but are instead giving of ourselves to care for her is a reflection of the very heart of Christ. God is glorified in this. The angels are watching this. 

2) Scripture tells us that when we serve others we should do so "as one who serves by the strength that God supplies--in order that in everything God may be glorified through Jesus Christ."  God has shown himself to be abundantly sufficient as we seek to care for Eden. "I know how to be brought low, and I know how to abound. In any and every circumstance, I have learned the secret of facing plenty and hunger, abundance and need. I can do all things through him who strengthens me" (Phil 4:12-13). The sufficiency, grace, comfort, and power that Sara and I have been given these past two weeks does not come from ourselves. It comes from God. In this he is glorified. 

3) Then God said, "Let us make man in our image, after our likeness" (Gen. 1:26). Eden has worth because she was made in the image of God. In stark contrast to the mindset of the world, Eden's worth does not increase or decrease based upon her ability to contribute or give back. Her worth is fixed because she is a "little god" -- made in the very image of God. It is from his worth that she derives her worth. Our love for this little one made in God's image honors the worth of God himself. It says something to the watching world about God's glory. God is glorified in this.

4) Prayers, compassion, gifts, visits, help, support, kindness have flowed to us from Christ's body, the church. Because of Eden's life, the beauty of the church has shined to the glory of God. God is honored and glorified by this. 

5) Eden's sufferings, which are causing all of this glory to go to God, will be abundantly rewarded on the final day. "For this light momentary affliction is preparing for us an eternal weight of glory far beyond all comparison" (2 Cor 4:17). If much glory is going to God as a result of one of his children's suffering, God will most certainly richly reward that suffering. Therefore, in that day, when God anoints Eden with immortality and everlasting beauty, God himself will be seen to be abundantly gracious and generous as he rewards Eden far far beyond what her suffering deserves. Her beauty is diminished here; her radiance will be the brighter there. "The sufferings of this present time are not worth comparing with the glory that is to be revealed to us" (Rom. 8:18). When we see the glory that God bestows upon Eden, it will result in the "praise of his glorious grace." He will be glorified.