Friday, May 20, 2011

Little White Lines

Yes, we're still here, alive and well. I'm still not as dedicated to updating the blog as I would like to be, but any intentions of changing that are quickly thrown out the window when I realize how few hours there are in each day. Holden continues to thrive here at home, smiling with a little more joy each day. It's not all ups, but the downs are fewer and farther apart, and for that I am thankful.

I was laying in bed with Holden this morning, and he was tracing his biggest scar with his finger, the same way I often do. Since then, I've been thinking a lot about his scars, and what they mean to me. He has quite a few of them, more than we were prepared for. But I guess those scars can serve to remind him throughout his life about the things that truly matter.

I hope he's never ashamed of those lines. I hope he doesn't become self-conscious and try to hide them as he gets older. His body looks like a battlefield, but he won the battle. I want him to be proud of that. I want him to be proud of those pink and white lines, and of what they mean.

Someday soon we'll get the call for his heart transplant, and one of those lines will have to be redrawn. I've grown pretty fond of his little body as it is, including all of his scars, but I'll grow to love the new scar just the same. A new scar means another victory. A new fight, a new line... His own special badge of courage.

A scar is defined as a lingering sign of damage or injury. I don't know that my definition is the same. To me, his little white lines are a lingering proof of answered prayers. Proof that God kept His hand on my baby, then and now.

Holden will never know how many tears we've cried as we traced those same lines. How covered he was in prayer as they changed from angry red slashes to shiny white lines. He may never understand the full magnitude of what those scars symbolize, but I hope he I hope he sees the beauty in them. I hope he realizes they don't make him a victim, they make him a survivor.

Scars don't form on those who lose the fight. They only form on the living... The survivors. More than anything, that's what Holden's scars mean to me... He is a survivor.

Saturday, May 7, 2011

Happy Mother's Day!

On this particular Mother's Day, I am thankful for my blessings in a way that I couldn't have been in past years. These last six months have been the hardest months of my life, full of unbelievable highs and unimaginable lows. Getting through those months has given me a hard-earned perspective on what is most important. I wish somehow that I could go back in time with this new perspective, so it could benefit my girls as well. Unfortunately, that's one of the hardest lessons in life... The only possible direction is forward, for better or for worse.

Regardless, this year I am counting my blessings, and there are so, so many to count. Kaitlyn, the baby girl who made me a mother, is sitting on the line between little girl and woman. She is sensitive and kind and oh-so-smart, all in a beautiful package. She makes a parent proud, proud, proud. Rylie is a little charmer who lives up to her nickname of Smiley Rylie, with her impish grin and sparkling eyes. She is a live wire and a free spirit, and she's going to set the world on fire one day. Then there's Holden, my miracle baby, who reminds me daily that every second of life is a gift. He is strong and courageous and such a fighter. He smiles, loves, laughs and fights on- doing it all with more heart than any of us.

These are the blessings I'm counting this year, and I am on-my-knees thankful for all three of them. Happy Mother's Day!

Monday, May 2, 2011

Winter in May?

The unseasonably cold weather (really, temps in the 40's, in the first days of May??) has kept our stroller loving little man confined to the house today, and he hasn't been happy about it. We spend the majority of every day outside, and he doesn't understand why this day is any different. If I hadn't been such an overachiever a month ago, we might still have some of our winter clothes out and available to wear, but they are all packed away and stowed half an hour away. Sigh... Once he wakes up from his nap, I'm going to have to get creative to keep him entertained.

Aside from the torture of being cooped up all day today, we've had a pretty tame and uneventful week. I LOVE tame and uneventful weeks! We haven't had enough of those in the past months. Holden seems to be pretty well adjusted now, although changes and visitors still throw him into a tailspin. His favorite game is still peek-a-boo, and he is still absurdly adorable when he's playing.

He's made progress in his therapies this week as well. He had completely forgotten how to use his legs by the time we got home, but now he's starting to bear some weight on them again. He's even pulling up on his own when he wants something badly enough (with a little help balancing, of course). His tolerance for tummy time still remains near zero, so I guess we'll be skipping the crawling portion and moving straight to walking. He does have a feeding tube, pacemaker, and multiple scars all in his abdomen... If I had all of that stuff in my stomach, I think I'd be hesitant to spend too much time laying on it too.

The biggest improvement has been in the eating arena. Since his last surgery in early March, we haven't been able to get him to eat more than a bite of anything. He didn't even want to drink out of his cups, when before he was drinking whatever we'd give him. Last week, we left him unhooked from his feeding pump while we took him to see his pediatrician, and by the time we got home he had gotten hungry. For the first time in a long time, he was really interested in eating! I'm not sure if all the work we've done with him has finally helped, or if his little belly just felt empty, but I'm thankful! Since then, we've been able to feed him quite a few different things, although he's still not taking in enough calories to wean him off of his feeding pump entirely. He won't eat more than a bite or two of any kind of baby food, but he's loving crackers, cookies, veggie sticks, ice cream and cheese. (Yes, the child who eats next to nothing will eat all of the shredded cheese I can stuff into his mouth. He must get that from his Dad.) He's also addicted to the Pringles Stix, Honey Butter flavor, thanks to his speech therapist who keeps introducing new foods. We're trying out a new routine of only feeding him through his tube at night and supplementing that with table foods during the day. I'm hoping and praying that doing this won't cause a drop in his weight, since he can't afford to lose any more. I think it might be a wash though, since he only throws up once or twice a day now, compared to ten to twelve times a day on continuous feeds. Surely he's getting at least the same amount of calories in him?

The final improvement of the week has been Holden sleeping almost through the night! He hasn't slept through the night once since he was born, aside from when he was knocked out in the ICU. (And that doesn't count.) He's never been the best of sleepers, but the past weeks have been horribly hard on both Holden and his mom. He would wake up crying and remain inconsolable for the rest of the night and into the early morning hours. He didn't want to go back to sleep, he didn't want to play, he didn't want to rock... He didn't want anything. At our last visit, his pediatrician recommended we try Melatonin. I had never heard of giving Melatonin to a baby before, but I have to say now that it is my favorite drug EVER. His doctor said that since it's natural, it won't interfere with all of the other meds he's on, and other babies have used it with no issues. I had a few twinges of guilt over giving my little boy another drug when he's already on so many, and also basically drugging him to get him to sleep. But after the first Melatonin-induced night of sleep, those twinges of guilt are gone. Why haven't we included this in his arsenal of drugs from the very beginning?? He's been on every other drug on the planet, but Melatonin is my hands-down favorite. Can you tell I'm a little enthusiastic here? It must be the extra energy from all of the sleep I'm finally getting! :)

The little man is waking up from his nap now, so I'll have to go rack my brain for some new indoor activities. I do try and update as often as I can, but I know I fall short of expectations many weeks. Please know that whether I say it once a week or once a month, we are immeasurably grateful for your continued support and prayers. Holden still has a long road ahead of him, and it is such a comfort to know that he's not walking it alone. Thank you for that.