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.
Friday, May 20, 2011
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!
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.
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.
Saturday, April 23, 2011
I'm Still Here
Well, if no news is good news, you're safe in assuming we've been living a lot of good news around here lately. Our days are still busy, and I still feel like I'm losing my mind most of the time, but we're settling in more each day. Most of our time is spent playing follow the leader, and I'll let you guess which pint-sized dictator is the leader in our house.
We've had quite a few appointments with various doctors and therapists in the past couple of weeks. His physical and speech therapists come twice a week, and his occupational therapist comes once a week. With all of our appointments in Dallas, we've had to cancel and reschedule a few of those appointments, but I think it's safe to say we're making progress. We may be moving at a turtle's pace, but it's progress nonetheless.
We're still having issues with his ear infections, even though he's on round-the-clock antihistamines for his allergies. I don't know what we're going to be able to do about that, but we have an appointment with an allergist at the end of June. Apparently, those are popular doctors, as that was the earliest appointment we were able to get.
He's also stopped sleeping, pretty much completely. I don't know if that's due to his ears, or teething, or some other issue we haven't figured out yet. If he was waking up happy and wanting to play, that would be one thing, but instead he's waking up scared and crying. He continues to cry and toss restlessly for the rest of the night, until we finally get him up before the sun comes up. He's not even fully awake when he's up in the middle of the night, so I don't know what's going on. We're going to try and talk to his ped sometime next week, who will hopefully have some suggestions. He's already on Benadryl and Valium, both of which should be helping him sleep. And if it's nightmares waking and keeping him up, I would think the Valium would help? Just one more mystery for the little man...
We met with his primary cardiologist on Friday, Dr. Pearse, and she didn't have much to add. Holden was pretty unhappy about being at yet another doctor's office, so we tried to get out of there as quickly as possible. We were supposed to go to Children's on Monday for an appointment with the transplant team, but the sewer system here collapsed and Trent had to spend the day fixing that instead. Thankfully, we were able to reschedule to Thursday, and the sewer system got its repairs.
We had an appointment at the Legacy branch of Children's bright and early Tuesday morning to see Dr. Russo, his GI doctor. We were only an hour late to that one, after getting lost and stuck in traffic. They still let us come in, and we had an eventful day there. Our appointment started out with depressing news, which we expected but didn't necessarily want to hear. Evidently, we've run all of the tests and tried all of the medications we can try to reduce his vomiting. The tests didn't show any physical abnormality, so it's not anything that can be "fixed". The dr. thinks the vomiting is caused by one of two things, or possibly both: cardiac output and sensory issues. When the heart isn't working as efficiently as it should, other parts of the body get prioritized. The lungs, kidneys and liver get attention first, and the gut is last on the list. That means that while his heart is working well enough to keep him alive, it's not working well enough to keep his whole body functioning as well as it should. If it's a cardiac output problem causing his symptoms, that won't be fixed until he gets a new heart. Even then, it may not be completely fixed because he may also have sensory or nervous system issues as well. The only fix for that is time. This was depressing news because as much as we knew that this was coming, I was still holding out hope that we'd be able to do something - anything- to help Holden. At this point, the only thing we can do is push the tube down into his intestines so that we can keep his feeds down to promote weight gain. This isn't what we wanted, but we may not have a choice.
After we finished talking to Dr. Russo, our surgeon's NP came in to replace Holden's gtube with a button. That went better than expected, and we were on our way home shortly after. We knew the button was going to take some getting used to, and we also knew that it could be pulled out more easily than the tube. That point was driven home later that evening, when the lines got wrapped around a door handle while Trent was bringing him inside, and the whole thing popped out. As blood and stomach contents squirted out of my little man, Trent and I made a few panicked phone calls (ending up on hold forever) before deciding to try putting the button back in ourselves. (It's important to get something back in as soon as possible, because the hole can close up in as little as two hours. Yikes!) We got it back in, then spent a paranoid half hour making sure that we had placed it correctly. Thankfully, we did, and I spent the rest of the night trying to remember to breathe again.
On Thursday, we went back to Children's for our rescheduled transplant team visit. They don't do anything major at these visits, but Holden does have to get labs drawn, and in the future he'll have echoes and other tests scheduled at the same time. His labs were pretty good overall, although his BUN and creatinine were a little elevated and his potassium was a little low. None of the numbers were off enough to cause major concern, so we were cleared to head back home. One thing I did find interesting was another lab number they follow called BNP. They'll use that number to track his heart failure, and Holden's was in the high 5000's. To put that in perspective, a normal number would be below 400. That number is yet another tangible reminder that no matter how perfect he looks on the outside, he is still far from normal.
Trent's family is coming to his grandmother's house (where we are) for Easter later this afternoon. While I'm looking forward to Holden's getting to share in a family holiday, I'm still a paranoid wreck about germs. We've done so well keeping him in his bubble, and I am so afraid he's going to come down with something. I bought some soap and hand sanitizer to keep by the door, and hopefully everyone will use it without me having to run around squirting people like a crazy lady. Fear and paranoia can do strange things to an otherwise fun-loving mama. I've already promised myself that I'm going to try my best to relax and be thankful for the first holiday Holden's getting to celebrate at home instead of in the hospital. Easter is a celebration in any case, and we have more than enough to be thankful for this weekend.
In between all of Holden's command appearances and therapy appointments, we try to keep things quiet, calm and happy at the house. He's lost so much time, and I want so badly to make it up for him, to give it back. I may not be able to do that, but I can do my best to keep him as happy as possible now. He may not have found his voice just yet, but I know what he loves, and that's more important, right? We spend the days outside, soaking up the sunshine. Holden would live out there if he could, and we tend to let him.
Every day is still a roller coaster, and in between the ups and downs we're trying to find the sweet spot. It's not all giggles and sunshine, but everyday miracles surround us. Holden serves as a potent reminder of that fact.
We've had quite a few appointments with various doctors and therapists in the past couple of weeks. His physical and speech therapists come twice a week, and his occupational therapist comes once a week. With all of our appointments in Dallas, we've had to cancel and reschedule a few of those appointments, but I think it's safe to say we're making progress. We may be moving at a turtle's pace, but it's progress nonetheless.
We're still having issues with his ear infections, even though he's on round-the-clock antihistamines for his allergies. I don't know what we're going to be able to do about that, but we have an appointment with an allergist at the end of June. Apparently, those are popular doctors, as that was the earliest appointment we were able to get.
He's also stopped sleeping, pretty much completely. I don't know if that's due to his ears, or teething, or some other issue we haven't figured out yet. If he was waking up happy and wanting to play, that would be one thing, but instead he's waking up scared and crying. He continues to cry and toss restlessly for the rest of the night, until we finally get him up before the sun comes up. He's not even fully awake when he's up in the middle of the night, so I don't know what's going on. We're going to try and talk to his ped sometime next week, who will hopefully have some suggestions. He's already on Benadryl and Valium, both of which should be helping him sleep. And if it's nightmares waking and keeping him up, I would think the Valium would help? Just one more mystery for the little man...
We met with his primary cardiologist on Friday, Dr. Pearse, and she didn't have much to add. Holden was pretty unhappy about being at yet another doctor's office, so we tried to get out of there as quickly as possible. We were supposed to go to Children's on Monday for an appointment with the transplant team, but the sewer system here collapsed and Trent had to spend the day fixing that instead. Thankfully, we were able to reschedule to Thursday, and the sewer system got its repairs.
We had an appointment at the Legacy branch of Children's bright and early Tuesday morning to see Dr. Russo, his GI doctor. We were only an hour late to that one, after getting lost and stuck in traffic. They still let us come in, and we had an eventful day there. Our appointment started out with depressing news, which we expected but didn't necessarily want to hear. Evidently, we've run all of the tests and tried all of the medications we can try to reduce his vomiting. The tests didn't show any physical abnormality, so it's not anything that can be "fixed". The dr. thinks the vomiting is caused by one of two things, or possibly both: cardiac output and sensory issues. When the heart isn't working as efficiently as it should, other parts of the body get prioritized. The lungs, kidneys and liver get attention first, and the gut is last on the list. That means that while his heart is working well enough to keep him alive, it's not working well enough to keep his whole body functioning as well as it should. If it's a cardiac output problem causing his symptoms, that won't be fixed until he gets a new heart. Even then, it may not be completely fixed because he may also have sensory or nervous system issues as well. The only fix for that is time. This was depressing news because as much as we knew that this was coming, I was still holding out hope that we'd be able to do something - anything- to help Holden. At this point, the only thing we can do is push the tube down into his intestines so that we can keep his feeds down to promote weight gain. This isn't what we wanted, but we may not have a choice.
After we finished talking to Dr. Russo, our surgeon's NP came in to replace Holden's gtube with a button. That went better than expected, and we were on our way home shortly after. We knew the button was going to take some getting used to, and we also knew that it could be pulled out more easily than the tube. That point was driven home later that evening, when the lines got wrapped around a door handle while Trent was bringing him inside, and the whole thing popped out. As blood and stomach contents squirted out of my little man, Trent and I made a few panicked phone calls (ending up on hold forever) before deciding to try putting the button back in ourselves. (It's important to get something back in as soon as possible, because the hole can close up in as little as two hours. Yikes!) We got it back in, then spent a paranoid half hour making sure that we had placed it correctly. Thankfully, we did, and I spent the rest of the night trying to remember to breathe again.
On Thursday, we went back to Children's for our rescheduled transplant team visit. They don't do anything major at these visits, but Holden does have to get labs drawn, and in the future he'll have echoes and other tests scheduled at the same time. His labs were pretty good overall, although his BUN and creatinine were a little elevated and his potassium was a little low. None of the numbers were off enough to cause major concern, so we were cleared to head back home. One thing I did find interesting was another lab number they follow called BNP. They'll use that number to track his heart failure, and Holden's was in the high 5000's. To put that in perspective, a normal number would be below 400. That number is yet another tangible reminder that no matter how perfect he looks on the outside, he is still far from normal.
Trent's family is coming to his grandmother's house (where we are) for Easter later this afternoon. While I'm looking forward to Holden's getting to share in a family holiday, I'm still a paranoid wreck about germs. We've done so well keeping him in his bubble, and I am so afraid he's going to come down with something. I bought some soap and hand sanitizer to keep by the door, and hopefully everyone will use it without me having to run around squirting people like a crazy lady. Fear and paranoia can do strange things to an otherwise fun-loving mama. I've already promised myself that I'm going to try my best to relax and be thankful for the first holiday Holden's getting to celebrate at home instead of in the hospital. Easter is a celebration in any case, and we have more than enough to be thankful for this weekend.
In between all of Holden's command appearances and therapy appointments, we try to keep things quiet, calm and happy at the house. He's lost so much time, and I want so badly to make it up for him, to give it back. I may not be able to do that, but I can do my best to keep him as happy as possible now. He may not have found his voice just yet, but I know what he loves, and that's more important, right? We spend the days outside, soaking up the sunshine. Holden would live out there if he could, and we tend to let him.
Every day is still a roller coaster, and in between the ups and downs we're trying to find the sweet spot. It's not all giggles and sunshine, but everyday miracles surround us. Holden serves as a potent reminder of that fact.
Saturday, April 9, 2011
Livin' the Dream?
Again, I've been having a little bit of trouble finding my way to the keyboard to update the blog. Our lives are still a little crazy, but we're settling in and forging new routines. Our lives are crazy, but full, and we are blessed.
Holden has finally found his laugh again, and I think it's my favorite sound in the world. We don't get to hear it often enough, but the few times he's shared that cute little belly laugh have melted me into a puddle. He hasn't laughed or giggled since we took him to the hospital on Nov. 1st of last year, and I was so afraid he'd lost it. He's also mastered the art of peek-a-boo, and it is absurdly cute. Of course, everything he does these days is ridiculously cute.
We went to Dallas on Tuesday for his first appointment at Children's since we left. It was a long day (with only one of the three appointments we had scheduled actually happening), but I think things went pretty well overall. Not much has changed from a cardiac standpoint, although he has moved up on the transplant list to a 1B. He's lost a little bit of weight, and falling off the growth chart again earned him a bump.
We haven't been able to get his weight back up since his last surgery, even with continuous feeds going 24 hours a day. We're trying to increase the calories in his formula, but his system doesn't seem to know what to do with those extra calories, and it's coming back up even more forcefully than before. The night before last, I was treated to a conditioning rinse of regurgitated Elecare, covering my entire head. Oh, the things we'll tolerate for these little miracles.
He has an appointment with his GI doctor on the 19th, and hopefully we'll come up with a better plan of action to curb his throwing up then. So far, most of the doctors are out of ideas, and their solution is to move his gtube to his intestines and bypass the stomach entirely. I don't think that's much of a solution, since we'd be fixing a symptom and not the original problem. We would be going backwards against any progress he's already made. He'll also still throw up, it will just be stomach acid instead of food. I'm sure he would agree with me when I say I think that would feel even worse. Of course, we may never know what's going on with his digestive system, and I have to learn how to be okay with that as well.
Our next appointments are with his regular cardiologist, the transplant team and the previously mentioned GI doctor, all in the next week and a half. That's on top of his regularly scheduled therapy visits to the house, and visits to his ped for ear infections. He is one popular little boy!
We've gotten the evaluations out of the way for speech, occupational and physical therapies. The results weren't unexpected, but heartbreaking regardless. His PT evaluated him in three main areas- Stationary, mobility and object manipulation. He ranked in the 4th percentile overall. Ouch. We obviously have a long way to go, and many months to make up. He was in the 12 month range in object manipulation, which was his highest. That didn't surprise me, as he's been playing with small toys even in his hospital bed. He is in the 9 month range for the stationary portion, and only in the 4 month range for mobility. He doesn't crawl, walk, or even pull up anymore. It's like he's forgotten his legs, and forgotten what they're used for. He screams when we try to put any weight on them, but I'm not sure if he's terrified or hurting. Like I said, a long way to go.
We also have a lot of work to do in speech therapy. I know I can be premature and dramatic at times, but I am approaching panicked that he has no words. He's just now started babbling again, but he should at least be saying mama and daddy by now. Maybe he's just saving it up? He can be a tease... However, he seems slightly less than not at all interested in learning to speak right now. I wonder if his lack of language has been a tender mercy up to this point.
I still have moments (and days) when I am completely frustrated, overwhelmed and angry at nothing in particular. But then there he is. All 8 kilos of soft, adorable superhero. He melts me, utterly and completely. So I pick myself up and start the daily process all over again. I give him his meds, feed him what I can, play peek-a-boo, read to him and rock in the chair. It's good couples therapy, for sure.
I'm learning this journey is all about going with the flow. I'm not there yet, but I'm learning. I'll continue to worry, pray and think silly thoughts about random scenarios that will probably never happen, because that's what I do. Because there's nothing else I can do. Your mind tries to save your heart in strange ways when things aren't perfect in the world. But sometimes hearts can't be shielded. Some of the things we put our baby through break mine into a million pieces. On those rough days, it's a good thing Holden has enough heart to carry us all. :)
Holden has finally found his laugh again, and I think it's my favorite sound in the world. We don't get to hear it often enough, but the few times he's shared that cute little belly laugh have melted me into a puddle. He hasn't laughed or giggled since we took him to the hospital on Nov. 1st of last year, and I was so afraid he'd lost it. He's also mastered the art of peek-a-boo, and it is absurdly cute. Of course, everything he does these days is ridiculously cute.
We went to Dallas on Tuesday for his first appointment at Children's since we left. It was a long day (with only one of the three appointments we had scheduled actually happening), but I think things went pretty well overall. Not much has changed from a cardiac standpoint, although he has moved up on the transplant list to a 1B. He's lost a little bit of weight, and falling off the growth chart again earned him a bump.
We haven't been able to get his weight back up since his last surgery, even with continuous feeds going 24 hours a day. We're trying to increase the calories in his formula, but his system doesn't seem to know what to do with those extra calories, and it's coming back up even more forcefully than before. The night before last, I was treated to a conditioning rinse of regurgitated Elecare, covering my entire head. Oh, the things we'll tolerate for these little miracles.
He has an appointment with his GI doctor on the 19th, and hopefully we'll come up with a better plan of action to curb his throwing up then. So far, most of the doctors are out of ideas, and their solution is to move his gtube to his intestines and bypass the stomach entirely. I don't think that's much of a solution, since we'd be fixing a symptom and not the original problem. We would be going backwards against any progress he's already made. He'll also still throw up, it will just be stomach acid instead of food. I'm sure he would agree with me when I say I think that would feel even worse. Of course, we may never know what's going on with his digestive system, and I have to learn how to be okay with that as well.
Our next appointments are with his regular cardiologist, the transplant team and the previously mentioned GI doctor, all in the next week and a half. That's on top of his regularly scheduled therapy visits to the house, and visits to his ped for ear infections. He is one popular little boy!
We've gotten the evaluations out of the way for speech, occupational and physical therapies. The results weren't unexpected, but heartbreaking regardless. His PT evaluated him in three main areas- Stationary, mobility and object manipulation. He ranked in the 4th percentile overall. Ouch. We obviously have a long way to go, and many months to make up. He was in the 12 month range in object manipulation, which was his highest. That didn't surprise me, as he's been playing with small toys even in his hospital bed. He is in the 9 month range for the stationary portion, and only in the 4 month range for mobility. He doesn't crawl, walk, or even pull up anymore. It's like he's forgotten his legs, and forgotten what they're used for. He screams when we try to put any weight on them, but I'm not sure if he's terrified or hurting. Like I said, a long way to go.
We also have a lot of work to do in speech therapy. I know I can be premature and dramatic at times, but I am approaching panicked that he has no words. He's just now started babbling again, but he should at least be saying mama and daddy by now. Maybe he's just saving it up? He can be a tease... However, he seems slightly less than not at all interested in learning to speak right now. I wonder if his lack of language has been a tender mercy up to this point.
I still have moments (and days) when I am completely frustrated, overwhelmed and angry at nothing in particular. But then there he is. All 8 kilos of soft, adorable superhero. He melts me, utterly and completely. So I pick myself up and start the daily process all over again. I give him his meds, feed him what I can, play peek-a-boo, read to him and rock in the chair. It's good couples therapy, for sure.
I'm learning this journey is all about going with the flow. I'm not there yet, but I'm learning. I'll continue to worry, pray and think silly thoughts about random scenarios that will probably never happen, because that's what I do. Because there's nothing else I can do. Your mind tries to save your heart in strange ways when things aren't perfect in the world. But sometimes hearts can't be shielded. Some of the things we put our baby through break mine into a million pieces. On those rough days, it's a good thing Holden has enough heart to carry us all. :)
Sunday, April 3, 2011
Wishing and Hoping
Life continues to be good to us at home. Our own special brand of good, but good. We may be operating a few degrees east of normal, but we are together in our own home, and it's a healing time for all of us.
We're still just getting through the days, one day at a time, but those days are getting better and better. Watching our boy return back to us, bit by bit, is a gift. I'm not ringing any victory bells just yet, but there's no ignoring the amazing grace that has covered our family these last months.
As much as I try to bury my head in the sand and pretend we are a normal family, reminders creep back in the oddest moments. Every time my phone shows an unavailable number on the caller ID, I have a small panic attack before I even answer it, thinking it's the transplant team calling to change our lives forever. Every time someone asks for more clarification on his transplant process, it serves as another reminder that we are not finished with the race just yet. (To clarify, I don't mind the questions at all, so don't feel bad if you are one of those who have been asking questions. I need a little reality in my fantasy bubble now and then.)
We start our rounds of appointments this week, and I'm dreading them. It's so much easier to pretend that he's going to be okay when he's here in the bubble. Taking him back to the hospital means taking him back to the reality that he's not, and will never be, a normal kid.
His own heart will take him as far as it can, and then - God willing- he'll have the gift of a new one. While it is a gift- the most precious gift- it will still not be enough to make him normal. The risks are real. The risks are huge. The risks are something we can't ignore. No... While he will be special and blessed beyond belief, he will never be normal.
It feels wrong and ungrateful to be so anxious in a place we've prayed to return to for so long. But the reality is there's nothing to anchor us to here. We're just waiting, drifting towards the next chapter in our lives, and it's so hard for me to just enjoy the now instead of trying to peek into the future. That's not my personality, and it's hard.
There is no avoiding the journey, or the work. But the good news is there's no avoiding the hope either. Hope is what offers direction and focus and energy. Hope helps us to see past the uncertainty, to better. Hope may not take away all of my fears, but it gives me a way to fight back against those fears.
Thank you Lord, for giving us hope.
We're still just getting through the days, one day at a time, but those days are getting better and better. Watching our boy return back to us, bit by bit, is a gift. I'm not ringing any victory bells just yet, but there's no ignoring the amazing grace that has covered our family these last months.
As much as I try to bury my head in the sand and pretend we are a normal family, reminders creep back in the oddest moments. Every time my phone shows an unavailable number on the caller ID, I have a small panic attack before I even answer it, thinking it's the transplant team calling to change our lives forever. Every time someone asks for more clarification on his transplant process, it serves as another reminder that we are not finished with the race just yet. (To clarify, I don't mind the questions at all, so don't feel bad if you are one of those who have been asking questions. I need a little reality in my fantasy bubble now and then.)
We start our rounds of appointments this week, and I'm dreading them. It's so much easier to pretend that he's going to be okay when he's here in the bubble. Taking him back to the hospital means taking him back to the reality that he's not, and will never be, a normal kid.
His own heart will take him as far as it can, and then - God willing- he'll have the gift of a new one. While it is a gift- the most precious gift- it will still not be enough to make him normal. The risks are real. The risks are huge. The risks are something we can't ignore. No... While he will be special and blessed beyond belief, he will never be normal.
It feels wrong and ungrateful to be so anxious in a place we've prayed to return to for so long. But the reality is there's nothing to anchor us to here. We're just waiting, drifting towards the next chapter in our lives, and it's so hard for me to just enjoy the now instead of trying to peek into the future. That's not my personality, and it's hard.
There is no avoiding the journey, or the work. But the good news is there's no avoiding the hope either. Hope is what offers direction and focus and energy. Hope helps us to see past the uncertainty, to better. Hope may not take away all of my fears, but it gives me a way to fight back against those fears.
Thank you Lord, for giving us hope.
Wednesday, March 30, 2011
Slow and Steady
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.
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.
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