Thursday, May 14, 2009

No, these are not current photos. I just had been wanting to share these with you guys. I look forward to sharing ones very soon that have the boys loving their little brother again.

This little meeting was so beautifully ordained by God in and of itself. This was the day after Shep was born and we had no idea he was sick. The lady who heard his heart murmur actually came and examined him while they boys were visiting. Had they come even a few hours later, Shepherd would have already been in the Special care nursery. It's been so great that they actually met him, held him, and put a cowboy sleeper on him. You know, all the usual things.While Shep is in the PICU, children under the age of 12 cannot visit, so they haven't seen him since he was 2 days old. Actually meeting him has helped them to think of him as a real little boy, not just an idea. Thank you, Lord
On Mother's Day, I spent the night in WF and as we were putting the boys to bed in our bed with us, for cuddling's sake, all of a sudden Aslan insisted that he wanted to go in his room and pray for Shepherd alone and then he'd be back. I listened at his door, and this is what he prayed. "Dear God, please help baby Shepherd to get better. I really,really like him. Amen"
After I swam to shore out of a puddle of tears, I thanked him for being such a good big brother. It's so beautiful to see the boys love Shepherd so much when they have only met him for a moment, months ago. 

This is Aslan's pose of excitement at the thought of putting a cowboy sleeper they had picked out on Shepherd. Boys in our house are cowboys from birth. 
Whewww. What a day yesterday. I am so grateful to have my boy with us today. So grateful to hold him in my arms another day. So grateful that God and God alone has sustained his life through another procedure and another day.
And yet I feel an awful lot like an Israelite, I must admit. 
After God parting the waters so many times for Shepherd, I'm still in the desert and I don't know how long this journey is going to be. Though I am grateful for the miracles God has worked soooooooo many times for Shepherd, my strength falters at the daunting road ahead and the unknown outcome. 
As I have mentioned so many times, my flesh just wants to get to the part where I don't have to trust God so much. I can't tell you how many times I have heard Noah and I ask the doctors about statistics. "So what do you think the chances are that this is going to work?" "So, how often do kids recover from this?" This is not a bad thing. We want to know what to expect. But also at the heart of that is a desire for a hope to hold on to. I want to get to the part where they say it's gonna be smooth sailing from here on out and Shepherd's gonna be safe. I want the part where they guarantee he's going to grow to be a strong, healthy little boy. The part where I can know for sure that were going to celebrate many birthdays and see our little boy running around our house, hear his voice screaming like a wild banchee, the way little boys do. But even if they did say that, it would be a false promise. No ones life has those promises. None of us are promised tomorrow. 
With that said, yesterday, after the doctor came out to tell us they were through and he was ok, I breathed a sigh of relief, praised God, then took a deep breath to steady myself for having to do it all over again many more times. 
At this point, they will continue to monitor his heart, in hopes that yesterday's surgery will have stretched his aorta out enough to stay that way for some time. They will do ECKO's and upper body blood pressures to check it. As long as it continues to stay open enough that it doesn't compromise his heart, they will continue to move forward with trying to get him home and growing strong, in preparation for his open heart surgery down the road.
The picture above is.......yes!!! His FIRST BOTTLE FEEDING!!!!! Our little 6 week old taking his first bottle!!! The speech pathologist came to see him for the first time today to do an evaluation. She was impressed with his ability to suck and swallow, considering it being his first time, and all the things he's working against. With heart babies, eating is especially difficult because their hearts are doing so much more extra work that it wears them out and they burn way more calories just doing the simple things, so it's hard to get them enough calories. He did great. He drank a whopping 6 cc's. Considering that this week was the first time he has been on "full feeds"(12cc's-1/3 of an oz- spanned throughout an hour), to drink 6cc's in a few minutes was big for him. At this point it's more that his stomach can't handle more, but they are slowly going to keep working him up and he'll keep getting feeds in his NG tube(tube in the nose). Meanwhile we'll just keep practicing and Monday he'll probably get a swallow study done on him to make sure he isn't asparating. 
So that was so special. They're even talking about moving him to the floor tomorrow or Monday. We're hoping Monday, cause when we move to the floor we will have to be there 24 hours a day with him (this is, of course great) but we're trying to get Noah through exams before that. Please pray for him as he tries to GRADUATE with all of this going on. What a guy. God's gonna teach him to be a multi-tasker if it's the last thing he does! Your doing great, babe. I don't know how you do it. Your amazing. 
Got to go back to WF for a few hours and hang out with 2/3 of my boys. I miss them like CRAZY! They're so much fun. I also got to see our house for the first time since we moved back in. Would you believe that my parents and family have not just moved me over there but completely unpacked us AND decorated. I can simply start living there when we bring Shep home. Can you believe how sweet God is to me through my family? Maybe sometime during eternity I'll think up a great way to say Thank you for the way they love me now and always have.

Thank you so much for praying. Thank you all for joining us in this beautiful, yet difficult journey God has planned to glorify Himself.  May you see him more and love him more because of it. I know we have.


Anonymous said...

What a great post. I love, love, love the pictures, and I LOVE that little boy. That picture with the bottle is SO precious!

We are right there with you too, wanting to hear that he will be fine from this point on, but you are so right to remind us that nobody has that guarantee.

I love you Steph. Can't wait to see that baby again.

Carolina :)

Sylvia Goode Basham said...

Thank you Stephanie....

Sarah said...

What a sweet family you have, when you said they unpacked and decorated your house it brought tears to my eyes. You are SO blessed. And your boys! You are deeply and incredibly loved by God.

Anonymous said...

Stephanie...if only I could tell you in the same beautiful way in which you write just how much your words have encouraged me, refocused me, etc. I cannot remember just how many times I have sat crying as I read your blog. We have all cried throughout your journey...but more importantly we've prayed...even Easton (our oldest) looked at pics of Shepherd and prayed with tears during the cath lab procedure. So, thank you for the time you've invested in recording your journey so that you/your family will always remember all the details of this time and so that so many of us could be reminded to live each moment with simple gratitude to our Maker. Love you guys...Summer

Kathy said...

Praying for you all in the midst.

I love coming here and seeing pictures of that precious boy (well all those precious ones actually!)

Many blessings.

Anonymous said...

Oi. Parabéns por seu excelente blog. Gostaria de lhe convidar para visitar meu blog e conhecer alguma coisa sobre o Brasil. Abração

Jerri-Anne said...

Love you guys! Praying for your strength and unity! Can't wait to see him on Sunday!

Anonymous said...

gosh I am in love with your boys...all three of them, and I still need to meet Shepherd. I am so happy he got to take a bottle today! Still praying constantly for you guys and loving you all. God is so good and it is wonderful to see how He is at work...keep sharing it with us, it's an awesome encouragement.