Thursday, May 21, 2009


Look at my sweet sleepin boy. He is up to a perfect 6 lbs. Yesterday, after a VERY trying day, he still took 6 cc's from the bottle. It doesn't help that the special formula he has to be on tastes terrible. Keep praying for his eating. At this point his stomach isn't tolerating any more than 15cc's per hour, continuous feeds. They want him to get up to having 58cc's at once, then waiting three hours- comparable to a more "normal" eating schedule. He is still getting his feeds through his NG tube. There is the possibility of him going home with the NG tube to sleep with at night, but then use a bottle throughout the day. The other option would be to do well enough to just use a bottle. The last option is to surgically have a Gtube put in.
I keep telling the doctors that no matter how frustrating this stage, or any other is, I refuse to be disappointed....
I. am. holding. my. son.
I pray that I can keep this grateful attitude in the future when the fact may be easier to take for granted.
I was reminded of this fact this morning. One of the cardiac surgeons was joking with me and reminded me of our first conversation months ago. It was the day before Shep's first surgery and he was informing me of the reasons he and his partner loved doing this particular surgery. "There is rarely serious complications and never a fatality," he said. I remembered feeling so at ease at this hopeful statistic.
This morning he told me that it wasn't soon after that was kicking himself for that statement. There was a time when he greatly feared that Shepherd would change that statistic.
Hearing this was a sober reminder of all that God has perfectly accomplished in Shepherd's life. Yes. I said perfect.
Many may question the use of that word in the midst of so many complications.
But I believe that Shepherd's life in the past, present, and future will be and has been perfectly what God intended. And I know that many beautiful things have and will come out of his life. Somehow beautiful things come out of ugliness.
No, not somehow. I know exactly how.
Because my Redeemer lives. And that is what Jesus is all about. Redeeming. Making ugly beautiful. And I don't just mean making everything ok.
I mean making Himself known. Because He is what beauty really is. To know Jesus is like the accumulation of everything beautiful you have ever seen, known, imagined, thought of, and dared to hope for.
I hope that's what He show's with Shepherd's life, with our lives, with every Christian's life.
Because that is real.
So speaking of real & beautiful moments- here's one. This is one very proud big brother. he is such a mommy. It's so sweet. He's gonna hate that line in 20 years.
It' s just your so nurturing and tender, my strong boy. Your softness is your great strength. Don't ever forget that.
He LOVES his face mask. He's not even sick, but he pretends he's a doctor.
Your hands will be that big one day, Shep. Give it time.
Other than feeding, they are mostly trying to tweak Shep's med's so that he can prepare for home. But I'm not getting any time frame. That's still unknown. For now, we'll handle one graduation at a time.
I will say 2 graduations in one week is one big heap of blessing. 2 of my favorite boys movin up. Shep to the CICC and Noah from school.
Did I just type that? I've hardly had time to soak it in. My courageous husband is graduating tomorrow. The only thing Noah or I have ever graduated from is Kindergarten, so this is very exciting. If I do something totally inappropriate at the graduation, it's not my fault. I've never done this before.
I only wish that our whole family could be there to cheer him on. But somehow this is part of the beauty, remember? Sick child in the hospital, incomplete family at graduation= ugly. God's plan for tomorrow=redeemed. I don't know what it will look like, but it will somehow show the beauty of God.
Thank You, Jesus.
Thank you for keeping our family through these many, hard years of diligence on everyones part. Thank You for getting us to this day. You are so kind and good.

We may not all be together tomorrow, but here's our first family pic. Someone shoulda told me to shower that morning. Oh, well. This is life, right? Ugly made B..e..a..u..t..i.f..u..l. remember?

Thank you for praying and joining us on this journey. Pray for preserverance on all our parts. There are so many things to be grateful for and so much beauty to be seen in this journey. May the weariness not cloud our vision.


Trinity Mommy said...

Beautiful post Steph! We are on our knees from a distance! Thanks for letting us be a part of your journey through your updates and specific prayer requests!

Anonymous said...

It's about time lady! 3 days??

I'm just giving you a hard's not like you are sitting around eating bon bons.

Anyhoo, I love this post and the pics of the boys!! I especially love the last picture with you smiling at Aslan while you are holding Shepherd. It's the happiest you've looked in any of these pics, I think. :)

I love you and GO NOAH!!! So proud of you!!!

Carolina :)

Anonymous said...

I agree with Carolina, 3 days is too long! I love reading these posts and feeling encouraged by your faith through all of this. That is one of the many beautiful things happening through Shepherd's life, and I know I am one of just many being encouraged by you guys.
Tell Noah we are both so proud and excited for him, I know it has been a long road and it must feel so wonderful to be done!
We love you guys!
-Kelly (and Nathan)

Kirsten said...

YAY! YAY! YAY!!! For all things this post is: YAY!!! God is SO faithful. And I'm rejoicing with you and your family in both graduations!! Still praying daily for precious Shep and the whole family. Love you friend.

Anonymous said...

Aslan is so adorable holding his new baby brother, he looks like he is enjoying every moment of it!!!

Congratulations Noah on the graduation tomorrow!

The Vahala's

Sylvia Goode Basham said...

Congratulations on all things! And Steph, you look beautiful too, even without a shower. Remember, a blog is not scratch and sniff :-)

StaceyC4 said...

Wow, what a week! congratulations to Noah. He has worked so hard and through so much. Yeah, him! And Shep just continues to amaze me.

I wanted to encourage you - when Michael was born, he had a whole protein allergy. Totally nothing compared to all that you are going through but for the first month of his little life we had no idea what was wrong with him but he kept losing weight. The formula that they finally found for him, helped but spelled and tasted so bad, it was hard to get him to eat. I told the doctors "This is what evil must taste like!" He did eventually start eating and I am sure Shep will too.

Love to you all!

The Cotrufo's

Hugh & Hollie Carson said...

So good to see you all smiling. Still praying. Thanks for the updates.