Today started out much like every other day at home... I "woke up" (if you can actually call it waking up after not really going to sleep) mad at the world, sleep-deprived and overwhelmed. We still haven't really settled into a routine here, and we're trying to coordinate all of Holden's home medical needs and therapists with his many appointments and command appearances outside of our little bubble. I started the day in a pretty depressing mood. I snapped at my husband, threw things around with a little more force than necessary and sulked by myself outside for a little while. (In case you're wondering, it's spelled b-r-a-t.)
However, my day ended on a good note after reading through some messages and emails when I got online this evening. Our lives are filled with the most kind-hearted, loving, generous people on the planet. We don't deserve them, but I am thankful for them all the same. You will never know how much I needed that pick-me-up today, and I am beyond thankful for the many blessings in our lives. This life isn't all rainbows and roses, but blessings can be found all around us.
We are slowly adjusting to our new version of normal at home. We spend most of our days around here either pulling out medications, measuring them or pushing them. He takes more meds now than he's supposed to take after his transplant, and that is a LOT of meds. I was thinking about those meds this morning as I was trying to measure and cursing them. I thought about how much of our lives revolve around them. Truly, everything in our day revolves around medications. And yet, each one is a parent's hope, a baby's future. Each one of them helps my baby live to see another day. When I think about it like that, it's hard to complain about the chore of dispensing meds.
Holden seems to be adjusting a little better each day, even seeming happy for short periods of time. He's still throwing up enough to break my heart for him daily, but that's nothing new for him. He has another ear infection, and we're going to his doctor's office in the morning, where he'll probably have to get an antibiotic shot to start his day off. Poor kid.
Overall, he's seeming happier. I'll be satisfied when the smile on his face is more of a permanant thing, but I'm content with making steady progress for now. I'm sure my disappointments are more about setting my expectations too high than anything, but I refuse to set them any lower. He deserves to have the bar set high for him.
I think we set the bar lower for him too often because of all that he's been through, and maybe that's a mistake. It's hard when I've been thinking so much lately about how much Holden has missed, and is still missing out on. Trent tried to take him for a tractor ride last night, which he used to adore, but now the tractor terrifies him. It's another small thing, especially in the big picture of the miracle that is Holden's life, but it gets me down regardless. I feel like we should be providing extra happiness somehow, to make up for all that he's lost, but I realize that's not even possible. I'd settle now for just a little bit of normal happiness. Inside of that beaten little body is a little boy crying to get out, and I'm more determined than ever to help him find his way.
Life is short, but wide. Holden's journey only makes it wider.
Wednesday, March 30, 2011
Sunday, March 27, 2011
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.
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.
Wednesday, March 23, 2011
Day 143- Homeward Bound
We've spent the past 24 hours preparing to take our baby home, and it has been a whirlwind! We have all of the supplies we'll need (hopefully), and we've consulted with our many different teams of doctors to set up appointments in the next few weeks. I'm in the process of packing up the last of our things now, and we're hoping to get to leave after his "going home" party at noon. (One of the doctors brought cupcakes for a party... I think everyone else is just as excited as we are!) I'm sure today will be bittersweet, as we've lived here for so long, but I'm looking forward to getting to know our home again! I won't be able to blog daily, since our internet connection at home is sketchy at best, but I will try to update as often as possible. As always, thank you all for your support, encouragement and prayers. We've appreciated all of you, more than you could know. :)
Tuesday, March 22, 2011
Day 142- HOME tomorrow!
Our big news of the day? Well... We're going HOME tomorrow! (As long as Holden's labs, specifically his BUN, come back with the right numbers in the morning. And as long as the home health companies deliver all of the correct supplies today, as promised. But those are just details. :)
One hundred and forty-three days after checking in for his first surgery, we're taking our baby home. Can you believe it? I can't.
I am excited and terrified and incredibly thankful for the blessings that are ours. And yes, despite all of the hardships and setbacks, we are blessed.
Tomorrow we'll be out the door and on our own. All of us growing up bit by bit. Becoming more confident in our judgment. More confident in our little man’s ability to hold his own. And I'll bet that he'll do more than hold his own... This kid is going to fly.
So good bye, CMC. You've given us nightmares and miracles. You've been a comfort. Overpriced and worth every penny. We’ve hated you. We’ve loved you. We’ve needed you. We will miss you.
One hundred and forty-three days after checking in for his first surgery, we're taking our baby home. Can you believe it? I can't.
I am excited and terrified and incredibly thankful for the blessings that are ours. And yes, despite all of the hardships and setbacks, we are blessed.
Tomorrow we'll be out the door and on our own. All of us growing up bit by bit. Becoming more confident in our judgment. More confident in our little man’s ability to hold his own. And I'll bet that he'll do more than hold his own... This kid is going to fly.
So good bye, CMC. You've given us nightmares and miracles. You've been a comfort. Overpriced and worth every penny. We’ve hated you. We’ve loved you. We’ve needed you. We will miss you.
Sunday, March 20, 2011
Day 140
Now that we have a plan in place for going home, impatience is quickly setting in. I can't believe we're about to call the first act of this beautiful nightmare complete. I can't believe it, trust it, or really begin to breathe myself. I feel like we've been climbing mountains for the past five months. Now we've climbed our latest mountain of sand and we will do our best to stay on top until the ground starts changing underneath our feet again.
With each passing day, we see a little bit more of our boy emerging. It's so much easier for him to embrace happiness when it's not interrupted by constant vomiting, raging fevers and the burning of healing scars. He gets a little bit better every day, in all areas, and I couldn't be more thankful.
We'll be back as guests in this same place soon, when he gets the gift of a new heart. But until then, the world is ours.
Progress. It is sure and steady and remarkable. It will be even more remarkable at home.
Hospitals are not true places of healing. They are places of fixing. Of brilliance. Of life-saving miracles. But nobody leaves a hospital healed. While we are feeling grateful beyond belief, none of us feel healed.
Real healing comes when the spirit feels safe. Home is magic. Family and familiarity and routine. Our smells. Our people. Our space.
The theory is that he may do better outside the hospital than in. Freedom, fields, tractor rides, sunshine... It all leads to a sunnier attitude. It all goes into the mix of healing and overall happiness. I think it's a good theory.
This adventure we're on with Holden has mostly been a nightmare up to this point, with a few joyful moments in the middle. But I continue to believe that he can weave this story into something magical.
All eyes are on you to make it the best fairy tale ever imagined, Holden- fight on.
With each passing day, we see a little bit more of our boy emerging. It's so much easier for him to embrace happiness when it's not interrupted by constant vomiting, raging fevers and the burning of healing scars. He gets a little bit better every day, in all areas, and I couldn't be more thankful.
We'll be back as guests in this same place soon, when he gets the gift of a new heart. But until then, the world is ours.
Progress. It is sure and steady and remarkable. It will be even more remarkable at home.
Hospitals are not true places of healing. They are places of fixing. Of brilliance. Of life-saving miracles. But nobody leaves a hospital healed. While we are feeling grateful beyond belief, none of us feel healed.
Real healing comes when the spirit feels safe. Home is magic. Family and familiarity and routine. Our smells. Our people. Our space.
The theory is that he may do better outside the hospital than in. Freedom, fields, tractor rides, sunshine... It all leads to a sunnier attitude. It all goes into the mix of healing and overall happiness. I think it's a good theory.
This adventure we're on with Holden has mostly been a nightmare up to this point, with a few joyful moments in the middle. But I continue to believe that he can weave this story into something magical.
All eyes are on you to make it the best fairy tale ever imagined, Holden- fight on.
Friday, March 18, 2011
Day 138
For the first time in a very long time, I feel really optimistic about going home soon. Holden decided to pick a day for a turnaround, and we're in a much different place than we were last week. His vomiting hasn't stopped completely, but it's much more manageable now. He's still coughing and junky, but I think we're on the tail end of that as well. Overall, he feels SO much better, and we almost have our baby back... All 8 kilos of stubborn boy. :)
We spoke with the doctors this morning regarding a realistic plan for getting him home. We have a few hurdles to jump before discharge, but the issues are nothing too major or unattainable. We'll be working on all of that in the next week, and then it's time to pack! (As long as Holden cooperates, and we're praying hard that he will.)
The past couple of weeks, I think Trent and I both got caught up in the depression and hopelessness of what was happening with Holden. With every new setback, our dream of taking him home to wait for his transplant seemed more and more unreachable. I think somewhere along the way, we forgot how many miracles had already been gifted to him. We forgot to have faith that more were sure to come. Holden never forgot that, and he never stopped fighting. Of course, his fight isn't over yet- not by a long shot- but I have more faith than ever that he will come out the winner in this battle.
I've said it before, and I'll keep repeating as necessary... Prayers are answered. Hope is rewarded. Holden never forgot what we should have remembered every single day- An optimistic spirit heals.
We are beyond grateful for your unending prayers. We felt them, every day, and I am on-my-knees grateful.
It's time for greener pastures- literally- so watch out, world. Holden's headed your way. :)
We spoke with the doctors this morning regarding a realistic plan for getting him home. We have a few hurdles to jump before discharge, but the issues are nothing too major or unattainable. We'll be working on all of that in the next week, and then it's time to pack! (As long as Holden cooperates, and we're praying hard that he will.)
The past couple of weeks, I think Trent and I both got caught up in the depression and hopelessness of what was happening with Holden. With every new setback, our dream of taking him home to wait for his transplant seemed more and more unreachable. I think somewhere along the way, we forgot how many miracles had already been gifted to him. We forgot to have faith that more were sure to come. Holden never forgot that, and he never stopped fighting. Of course, his fight isn't over yet- not by a long shot- but I have more faith than ever that he will come out the winner in this battle.
I've said it before, and I'll keep repeating as necessary... Prayers are answered. Hope is rewarded. Holden never forgot what we should have remembered every single day- An optimistic spirit heals.
We are beyond grateful for your unending prayers. We felt them, every day, and I am on-my-knees grateful.
It's time for greener pastures- literally- so watch out, world. Holden's headed your way. :)
Thursday, March 17, 2011
Day 137
Our exciting news for today is that we'll be moving to the floor again sometime this morning. Holden seems to be doing better, and he's vomiting much less than he was. His oxygen requirements are still pretty high and his lungs still sound junky, but we're in a much better place than we were a week ago! He's been awake and flirting with nurses all morning, so I know he feels at least a little bit better. I'm hoping this is step one on our path home, but I don't want to be overly optimistic. I'll try to post a more detailed update soon!
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