Sunday, May 3, 2009

Shepherd's had an encouraging week. Yesterday his output from his chest tube was 30 cc!!!!!!! That was unbelievable, though today it will be higher- 60cc so far. But I'm trying not to be discouraged by that. It still seems to be trending down. I am really hopeful that we'll be able to avoid surgery. The next question is when to re start his feeds and see if he continues to trend down. Pray that the duct will have sealed with his time off of food and he'll be able to tolerate the formula without leaking it out.  And, yes, it's 5 and no re-growth of yeast!! So he'll continue his meds for the yeast for like 2 more weeks and they will keep their eye on it. But yay!!!!

Right now, I am sitting next to my boy as he experiences his first ride in a baby swing. The unfortunate part of him feeling so much better is that he realizes life aint so hot right now. No food, not a lot of holding, not a lot of stimuli, tubes and needles..not a lot of fun. So he's been pretty irritable, but gratefully when I do hold him, he calms right down. I really think he's largely just hungry. He does that frantic, eating his hand, newborn thing but then can't have food. I feel so terrible for him and there are so few things I can do to comfort him. It's too bad he kicked that drug habit. Sure would make life easier for him right now. But instead, we'll work on teaching him not to numb his pain at an early age;)
Right now all the nurses are taking turns coming in to look at how cute he is in his swing. I am so grateful that they love him so much. Especially the current night nurses. It makes it so much easier for me to leave for the night. 
Anyway, the swing is working like a charm and he has drifted off to sleep. I didn't even know they had a swing. Hmmm, they've been holding out on me. 
I do hope for his sake that he gets to eat soon. And it makes me look forward to when we get to go home. I just wanna be able to pick him up when he cries and rock him without tubes and wires coming out our ears. 
ohh, he's so hungry.. and awake now. Poor guy.
I'm gonna hang out here for a few more hours before I head home for the night. 
Tomorrow is Monday and holds the beginning of a new week. What will this week hold? Oh, my, it can be intimidating. I think of what each of these four weeks has held for our lives. Truly life changing moments. Some I never want to see the likes of again. Some I will treasure forever. Some both. 
Lord, I admit to you that I fear the future, the unkown. I want desperately to get to the place where I no longer have to fear. I long for the moment when someone can give me a guarantee that I will bring my son safely home with me.
But no one can do that.
And if they could, what would that really accomplish? Isn't that what we all long for on a level. We want a guarantee that it's all gonna be ok.  And what if it's not? What if life is hard  and painful and nothing at all like you expected?
Then I suppose we truly see this world and what it has to offer for the first time. And were left with only one thing.
We are left with a sovereign, loving Father who has redeemed it all and will not waste a moment of our pain. Not only that, but when it's all said and done... this was the short part.
James 4:14
"14yet you do not know what tomorrow will bring. What is your life? For you are a mist that appears for a little time and then vanishes."

For this fact, I am very grateful. I'm not trying to be dark and depressing. It isn't helpful for anyone for Christians to be the ones who pretend. It is helpful for us and for the world that we are ones who are truthful. And we find in the scriptures the truth that suffering is to be expected. Do we really think that the depth and darkness of sin, what happened at the fall were just kind of a bummer? No. Not that at all. Parents having to hold their little ones and say good-bye, babies struggling to get through their first moments, weeks, and months of life, siblings walking the halls of an ICU to say good-bye, people's bodies not working like they're supposed to, pain, sickness, and many, many tears. These things are sin. And it's ugly.

But, we also know the cross. We know there is healing, even if it isn't in this life. So, it's not our job to pretend that sin or it's effects in this life are small, or neat, or tidy. They are big, and strong and painful.
When we can be honest about this, we can truly be honest about the fact that our God is bigger, stronger, and good. And yes, life holds  immeasurable beauty, as a symbol of God's active grace towards us in this vapor of a life. And, yes, it's our job to be always looking for and acknowledging that beauty. God is beauty. Especially when seen in contrast to ugliness. But I'm not going to try to explain it. I can't explain it.  It also isn't neat and tidy. But it's true.
All I now is that I know God. And I know hope. 
 And Heaven is going to be sweet... and it's going to be the long part. I love that.


KR said...

He looks so beautiful in the swing! Praying for his hunger to ease or the feedings to begin and go well. Thanks for the encouraging post...and for telling the truth. Pretending is just posing..and it doesn't help anyone. Thanks for reminding me about heaven being the long part...and the whole part. God bless.

Anonymous said...

Hey Stephanie!
My sister told me about your baby and we have praying constantly for Shepherd. We have been through something like this with Gauhara's baby and it wasn't easy. But it is such a privelege to know that our God has the last word and He is Mighty! You are such an encouragement to me! May God be glorified through Shepherd's life! (Ps.5:3)
In His love, Dilara