Home again, home again...

I guess I should start off with an apology for not updating for so long. In the chaos of getting home and settled in, securing internet access was pretty low on the priority list. I was surprised by how much I've missed having a daily account of the little details of our lives, however mundane or horrible those details were. I know many of you have missed the daily updates as well, and I'm sorry! Please know that if anything major happens with Holden, I will ask someone else to post on here so that everyone is kept in the loop. Otherwise, consider no news good news.

He's still puking, which isn't really an update. He had been doing so much better, and I was loving that for him, but the past couple of days have been rough. The vomiting has returned in full force, and that's even after we reduced the rate on his feeds a little bit. I don't know if it will ever end for him. Ugh.

Our biggest problem with coming home seems to be an adjustment issue. The hospital is the only home Holden has known for almost five months- more than a third of his life. I thought he might remember his real home, especially the things he loved most here, but he doesn't remember anything and it terrifies him. He is constantly freaked out by every little thing, and he's just had a really tough time adjusting. It does seem to be getting a little better each day, but we've spent most of our days and nights up to now trying to comfort him. He's scared enough of the house itself, and when we add visitors to the mix, he is out. He gets so scared of anything new that he screams and shakes with fear. It is the most pathetic and heartbreaking thing I've ever seen.

He's gotten so used to Trent and I always being within feet of him, because we didn't have a choice in a 12x12 hospital room. We can't even leave the room for a second before he starts screaming like someone is ripping him apart. It doesn't matter who's holding him or where we are, he wants us both in sight at all times. Of course, it's not a hardship to spend all of our time with him, but eventually nature calls! I hope he'll grow more confident in his surroundings as time passes.

He's also not a fan of the bathtub. And when I say not a fan, I mean NOT a fan. I thought he'd love being able to play in the water, but he doesn't love anything about bathtime now. I know it's a small thing, but that alone makes me want to cry. There are so many little things that break my heart for him each day. He has been denied so many normal baby things, and it's just not fair. I know life isn't fair, I've learned that lesson many times over. But it seems like such a cruel twist that Holden's had to learn that lesson at such an early age.

We took him to his pediatrician on Friday, then to get labs drawn. We never got a call that afternoon, so I guess we're to assume that everything was okay. I've gotten so used to knowing all of the numbers that I'm having a bit of a panic attack not knowing them now. I just have to get to tomorrow, when everything's open again!

I've finally gotten everything unpacked and put away, although I still have a mountain of medical equipment to put away properly. I cannot stand being disorganized in the least little bit, and the chaos is driving me insane! I'll get to it soon enough, I guess... I'm spending more time holding the little man than anything right now, and that's just fine by me.

We're slowly adjusting to our new routine here, with meds scheduled around the clock and feeding bags needing to be refilled in the middle of the night. I know I survived this sleep deprivation when he was a newborn, but there wasn't so much riding on me then! I'm constantly in a state of thinking I've forgotten something, and it's maddening. That should get better with time, right?

Once again, the only place Holden seems really at ease is outside in the sun, riding in his beloved stroller. We managed to zip-tie a pole to the side of the stroller and rig a coat hanger in it to act as an IV pole outside. (Credit can be given to Daddy for that one.) It may look a little white trash, but it gets the job done!

I'm hoping and praying that Holden adjusts to his "new" home a little better this week. I was so sure that home, sunshine and tractor rides would be just what he needed to lure him around a corner, but that hasn't happened yet. I want my happy boy back. I'm ready for my baby to have a little peace in his life. He deserves that much.