Thursday, June 4, 2009

There's no place like home

This little caravan is only part of his exodus out of the hospital. You know you've been there too long when it takes multiple trips to leave.
This is what you'll look like in  a few years, Shep!
Aslan & Haddon giving 'Baby Shep' a goodnight kiss on his toe, his first night home
First at-home meeting
Aslan is now thoroughly convinced that he is going to be a doctor who takes care of babies when he grows up.  He spends as much time as we'll allow hanging out with the nurses and chatting their ear off.

Getting Nana lovin
Shep's first walk outside!

So, here we are.
Sometimes I sit and think about how far God has brought Shepherd and I am humbled and amazed. 
It's good for me to sit and remember, when I am tempted to feel weary. It's easy for my weariness to be replaced with thankfulness when I put myself back in that place. 
Back in that place where I dreaded the future and feared so much for his life. Back in that place where I was broken hearted and pleading with God.
It's not as if life, and even Shepherd's life is free from suffering now. 
But all I can do is abide joyously in the present that God has made possible. And knowing that God has brought us to this present reality is comforting. Each moment of our "new normal" is a beautiful gift from God, not a heavy burden.
What I don't want to do is think that where we are now is to be expected or taken for granted. This could have ended a many number of ways. I don't say that to be morbid. I say that to protect my flesh from minimalizing what God has accomplished. I say that to remember my God is BIG. My problems are BIG and my God is BIG.

So now I have new BIG problems and the same BIG God. How wonderful.
The problems aren't that big really. Just trying to adjust to our new life. 
We love all of our nurses. The transition of having them in our home has in many ways been a big delight to us. We just love people and having them in our house without inviting them is kind of nice. I know that sounds funny. I'm not saying we don't need our peace and quiet an solidarity. I just mean that sometimes it's nice not to have the choice, but to instead learn to live life with people by necessity. Having the choice of when to open your doors to others can be stressful. I mean when is it really a good time? 
So, at this point, were enjoying sharing our lives, as we have for the past couple months, with many new people. I only hope that people who come into our home will feel, even if for only a moment, a reminder that they are loved. And not just by us, but their Maker. 
We have been so blessed with wonderful nurses. They are clearly sent by God and we find ourselves so grateful.

I'm just trying, at this point, to put together a new routine. I am a little intimidated by the great need for Noah and I to be SUPER organized. Hmmmmm. Doesn't seem like a good combo, but apparently God think it's possible. A nurse and I went to Shep's first Ped. appointment since home and it was hilarious. We were, of course, late. When we did get there, we had his pulse ox, apnea monitor, suction machine, feeding tube, oxygen and emergency bag. We did NOT have, come to find out, a SINGLE diaper, WIPE, extra pacifier, blanket... you know, all the normal stuff you take when you leave the house with your newborn. Life sustaining stuff... check. 

I think it'll take a little while to get my bearings and then we'll be fine. It just feels so good to be home, but I find that I'm sooo tired. I think, since being in the hospital since the day after I had a baby, I was in survival mode. 
Now that I'm home, it feels like I've been hit with a mac truck, no matter how much sleep I get. As long as I remember how necessary my spiritual need for refreshment is, It'll be fine. If not, I'm in trouble. Once the fatigue passes I can try to put my energy into figuring out a good routine around here. The biggest challenge for me right now is trying to integrate Shepherd into life, while letting the nurses take care of things, without feeling guilty. It's all just a bit weird. 
Noah brought home an AV cart to put his bouncy seat on. So that's on top and his equipment is on the bottom and we can roll him around the house. Also since we've been home we've been weaning him off his oxygen and he's doing great, which makes him a lot easier to transport. I am just excited about figuring out how to do the "normal" things with him. It's more complex for him, but he can do it. He's up tp 7lb 5oz and still working on eating.
So much to learn. so much new. so many challenges that we pleaded with God to have and now their here. We are so grateful.
Please keep praying with us for Shep's future health and wisdom for us with his care. Please pray for protection for our family and our marriage with all of these stressors and demands. Pray that God gives us clarity about what pleases HIM so that we do THAT. And only THAT.
ThankYou, guys.


Tori said...

We can't tell you how excited we are for your family!!!! We are in continual prayer for your little one.
Stuart, Ann, Tori, Issac & Sam

Sylvia Goode Basham said...

You bare your heart so eloquently. Thanks for sharing. Rejoicing and still praying with you.

Anonymous said...

I remember bringing my little trach baby home for the hospital for the first time when he was 3 months old. How wonderful the feeling, and scary all at the same time. The best advice I can give about sustaining your marriage through all of this, always think of yourselves as a team. Delegate certain responsibilities to each other, and no matter what, remember that God has such a special plan for your family. That has been our mantra through all of the tough times, and sometimes, the only thing that keeps our heads above water. He is a precious little boy. I look forward to watching him grow.

Joanna Hitt

Anonymous said...

It is so wonderful to hear and see all of the progress that you guys are making, and all the prayers that our great God is answering. You're such a blessing to us all in sharing your life with us. I love you guys so much, and can't wait to meet Shepherd!
p.s. The picture of the boys with their stethoscopes is soo cute.

godsgal said...

Yay!!! Y'all are home! I'm so excited for you - and you don't even know me! Please know that you are an encouragement to me and so many others - just reading your blog has been a reality check for me on so many days. Reminding me of what's REALLY important. I will continue to pray for you and your precious family. May God continue to pour out His blessings on you and help you regain your strength from this long journey to now.

Lynn Langford