Charlie and Jackson keeping us young

Guess who?

Guess who is done with Lovenox shots!

We are so excited!

If you hurt

I just finished watching a three part series called Twice Born about surgeries performed on unborn babies. Wow. You should watch it. I can relate so thoroughly in so many ways to so much of what I saw. So so so. Parents receiving devastating news about their unborn children, regrouping and pressing on, watching and waiting and hoping and hurting, feeling like you're coming back from war when you finally come home, etc. etc. My sister (in law) said Jackson's heart will always bear a scar and so will all of our's. She's so right. Hurt hurts. Hard isn't easy. This world is really really fallen. I am always tempted at this point to add a "but" and end my posts positively. And the truth of the matter is that I sobbed my heart out, after I watched the first episode in the series, thanking and thanking God for His grace toward Jackson. He lived! He's thriving! But if you're reading this and you're hurting...I want you to know I understand. And sometimes it's wonderfully freeing just to leave it at that.

Hearts, narcotics and such

Jackson and I took our first solo trip for a cardiology appointment yesterday. I thought for sure I was forgetting something as we drove out of town--usually there are regular medicines, refrigerated medicines, feeding pump, etc. This time all we had was a diaper bag and bottles. Wonderful!
This was a routine check up. Overall Jackson's heart is doing very well. He continues to be dependent on his pacemaker, but the pacemaker is working very well for him and the settings were able to be tweaked to allow the battery to last an estimated 7 years, rather than the 4.5 that it was previously. The worst news of the day was that an echocardiogram of his heart showed slight narrowing in the stent that was placed in January. At this point it's not significant enough to be worrisome, but they will repeat the test in three months to see where things are at by then. I got a picture of him during his EKG to prove that he really is the happiest baby ever. ;)
And speaking of happy, scroll down to see what medicine is now crossed off the list! No more Morphine as of Sunday. We are so grateful for each and every bit of progress. God has been good to us.

April

It's been such a long time since a post! Jackson is doing very well. He has continued to wean on his Morphine and is nearing the very end. Praise God! He continues to be a happy, sweet ball of joy in each of our lives. He is still on several medications, still getting two nasty shots per day, still getting therapy weekly, still having fairly frequent doctor visits (simply because of the many specialities he is seen by), and still continuing to make slow, steady progress. Did I mention he is a joy? He is 100% social and I often have to shoo the kids out of the room to get him to drink his bottle. Tonight all three kids had baths (Charlie and J had their first brother bath), and when we prayed with the kids before bed my cheek was resting against warm, sweet-smelling baby skin. It makes me feel like I can't breathe deeply enough. His scent, his warmth, his life. Thank You, Lord. Thank You.

P.S.We are home.