It's the same dance we learned back at the NICU that Tom has been practicing ever since.
Tom has made good progress overall since we've been back in South Bend. The docs have made several tweaks to his vent settings and have successfully weened him down on both is rate and his oxygen. Today, he's at 35% oxygen and at a rate of 25 breaths per minute. This is actually huge progress considering the setback we had last week.
On Wednesday, we had a "care conference" for Tom. All the major players in his care got together with us to discuss the necessary steps to Tom's discharge and to set a target date to bring him home. The PICU intensivist (doctor), primary nurse, social work, home nursing, pediatrician, etc. each brought to the table the goals or requirements that needed to be met before their piece of the puzzle would be ready for Tom's arrival at home. October 6 is the magical date. We should have our training done (including nursing-type care and understanding all of his gear), the home care folks should have nurses lined up and Tom should have time to get down a bit on his settings. How exciting - thrilling, actually. The thought of not having to split our time between home and hospital, of being able to spend time together as a family and of Tommy finally getting to see his brothers again made me giddy. Light at the end of the tunnel at last. Sure, we know the date
isn't set in stone; there are a number of stars that need to align. But having a date to aim for - that's a huge step closer to home.
The next day was a big day for Tom's brothers. Henry, Sam and Joe had their 6-month check-up with the pediatrician. Our friend Gretchen from the NICU stayed with Tommy at the hospital while Aunt Bonnie and I loaded up the other 3 hooligans in the van and took them to the doctor's office. All three checked out just fine - and took their immunizations like champs. Henry and Sammy did their fair share of crying and screaming, but I have to say that Joe is the one that really took it like a champ. Their current weights are very impressive, especially considering their tiny beginnings just over 6 months ago: Joe is the lightest of the 3 boys at home, weighing in at 13 pounds 4 ounces. Sam is 13 lbs 7 oz and Hank the Tank is a whopping 13 lbs 13 oz! Tommy's weight as of tonight is just about 13 pounds even. Huge!
Anyway, on my drive back to the hospital, Tommy's nurse called me to tell me he'd had a particularly rough morning. His oxygen saturations kept dropping, his CO2 was particularly high (even higher than when we first came to the PICU here at the end of July), and he was very uncomfortable. They'd tried a number of different settings on his home vent and needed to be moved back to the hospital vent. (For reference, the home vent could be compared to a Chevette and the hospital vent a DeVille. They both get the job done, but one of them has much better ride and handling.) Needless to say, I was upset. I was very concerned about Tommy. I felt awful that poor Gretchen was there in the middle of the mess. And I was sad at the big step backward. We had just been riding so high after the care conference the day before - and here we were, back on the hospital vent.
Come to find out, Tom had "tracheitis" (sp?). Because there is always mucus/secretions sitting in Tom's trach (as there typically is with any trach patient), its an ideal environment for bacteria and other "bugs" to hang out. Usually they hang out in a nice balance, but every now and then one of them gets unruly and causes a stir. Tom had been experiencing more secretions than normal and they were turning cloudy and slightly yellow - indicating a possible infection. We tested the mucus and voila - tracheitis. Luckily we caught it before it spread beyond his throat and with antibiotics he seemed to quickly shake the infection and has been doing very well ever since. In fact, they put him on his new home vent (a newer model than what he had before) Sunday morning. And since then we've made reductions in his settings - getting him down to the numbers I mentioned above. And the best part is that we're still targeting October 6 for discharge. We couldn't be
happier - or more relieved that he's recovered so well.
In other news, Tim took a short business trip to Pittsburgh and we were able to recruit enough help to keep things rolling at the house while I stayed with Tommy. In fact, we've had a wonderful succession of helpers to help us manage our crazy world. We honestly couldn't possibly thank each of you enough. We'll be searching for some steady help - perhaps in the form of a nanny or nursing student - to stand in for Becca and Aunt Bonnie as our steady helpers. Plus, this will allow time for me to focus on work. (Yes, I started back to work last week. Our checking account will certainly appreciate not sending those payments to Cobra any more. It's been a challenge to keep my head in the game, but hopefully it will get easier to find that balance between work and family.)
The helper of the year award, however, goes to Aunt Bonnie. Wow. What a trooper. Bonnie has spent over 5 weeks with us already - and after a well-deserved vacation next week, she's coming back for 2 more weeks with "her boys". Incredible. Amazing. She's been the glue that's held us all together - and has done it seemingly effortlessly. Simply put - as she typically does - "I just felt like I needed to be here." Bonnie told me she's prayed that the right helpers would find their way to us - that the right nurses, doctors, etc. would enter our world and help to make things better for all of us. But I think the helper that's had the most imact is Bonnie. You've been a guardian angel and fairy godmother to our boys and for that you'll always have a very special place in our hearts - and theirs.
Another guardian angel for us has been our neighbor Julie. Not only has she been a wonderful help with caring for the boys at home, she's also volunteered to be trained to care for Tommy when he comes home. She also offered to stay the night at the hospital with Tommy on Friday night. Not only did this give her more experience and training with Tom, but also gave Tim and me our first real date night in ... hell, in I don't remember how long. We attended McDazzle Friday night. That's the annual fund raiser for South Bend's Ronald McDonald Family Room at Memorial Hospital. If you've read our blog at all, you know how much we support and appreicate this wonderful service. The director of the RMFR asked us to be guest speakers and to share our story. We were happy to do so; anything in support of such a good cause. We had a great time at the event and got to see several familiar faces: many of the NICU doctors were there. :) Doctors Okanlami (from NICU
and PICU), Dr. White and Vitaliy with his wife Anna were there. Julie also arranged for us to have a room for the night at the Inn at St. Mary's. What a treat. Not only did Tim and I get to spend so much time together, but we also got to have some solid sleep. Both I'm sure were very helpful to us in so many ways.
On Sunday we attended the annual NICU reunion. It takes place at a children's museum in South Bend and NICU "graduates" and their families attend. We happened to be there when a news crew came through and asked to interview us. Sure! So we made it on the news. We've got it recorded on our DVR and - thanks to Kevin for this suggestion - I'm going to try using my digital recorder to capture the show on the TV so I can post it here or on youtube or something. More to come on that. If anything, we'll at least have some photos to share - of this event and a shot of Tim and me with Ronald McDonald Friday night.
We're making progress on our training in prep for Tom's return home and should have all those ducks in a row by the end of the weekend. We did our 24-hour shift here at the hospital with Tommy from 9pm last night until 9pm tonight. It all went very well. We were responsible for all of Tommy's care. The 24-hour requirement is intended as a sort of dry run for when we get home with Tom. Thankfully, we've got the experience of having him home for 2 weeks in July with his NG tube feedings and oxygen gear. Sure, his gear is more intense and complicated now, but if we could do that before, we can certainly do this now. Plus, since one of us is here all the time, we've already gotten so much experience with his feedings and other care.
Well, I think that covers things from our end of the world. Plus, I need to stop typing so I can get some sleep. Hopefully Tommy is on the same page and also feels that I should get some rest tonight. :) We'll post some pictures soon. And we'll certainly keep you posted on our October 6 target date for discharge. Thank you for your continued love, prayers and support!
Lots of love,
Kristin, Tim, Tommy, Henry, Sam and Joe
Wednesday, September 30, 2009
Sunday, September 13, 2009
South Bend Tribune article
Here's the URL for the South Bend Tribune article: http://www.southbendtribune.com/article/20090913/News01/909130369/1130
If this doesn't work, go to www.southbendtribune.com and there should be a link to our article on the right side of the screen. In the printed format, we're again on the front page. (That just cracks me up.) Anyway, once you get to the article online, there's an option to view more photos and a link to the slide show. There is supposed to be audio on the slide show, but it doesn't seem to be working on our home computer. Let me know if you have any luck with it.
Kev, I'll save a copy for framing...hoping we can cash in on your employee discount. :)
Again, if you live locally and get the paper, please save your copy for us. Enjoy!
Love,
Kristin, Tim and the boys
If this doesn't work, go to www.southbendtribune.com and there should be a link to our article on the right side of the screen. In the printed format, we're again on the front page. (That just cracks me up.) Anyway, once you get to the article online, there's an option to view more photos and a link to the slide show. There is supposed to be audio on the slide show, but it doesn't seem to be working on our home computer. Let me know if you have any luck with it.
Kev, I'll save a copy for framing...hoping we can cash in on your employee discount. :)
Again, if you live locally and get the paper, please save your copy for us. Enjoy!
Love,
Kristin, Tim and the boys
Saturday, September 12, 2009
Almost home
Hi everyone! Here's Tommy waving to you from his new bed in South Bend.
Unfortunately, I can't figure out how to edit photos on this computer, so the shot is a little dark. Don't be fooled: his room is actually very bright with a huge east-facing window.
Tommy is starting his third morning here at South Bend Memorial Hospital. He is settling in pretty well. It is so nice to be back "home" and surrounded by familiar faces. Tom has been visited by no fewer than a half dozen people from the NICU already. His primary nurse Jugenia even offered to babysit for a while last night so Tim and I could go out for a bite to eat together. What a nice treat. Tommy really seemed to enjoy the time with his friend Jugenia and Tim and I loved the opportunity to catch up and just be with each other for a couple hours. Thank you Jugenia!!
We had some issues initially with Tom's ventillator when we arrived on Wednesday afternoon: they didn't have the LTV (home vent) here for him and they put him on the vent he was on before the LTV at Riley. Though this would probably not affect his overall time in the hospital, I couldn't help but see this as a step backward. He had to be stable on the LTV for a week before we could transfer him here. So what good could come of putting him back on the other vent? (especially since they were constantly tweaking his vent settings) Anyway, its all a moot point now. Later that night, we were able to get the LTV set up and running. He's back on the same settings as when he arrived, but doesn't quite seem to have found his groove yet. They say that each machine has it's own slight variations on how it manages the air flow - and these variations may feel different to Tom. His respiration rate has been unusually high - especially when he's at rest - but all of his numbers are sitting right where they were before we left Riley. So there's no real reason for concern. We'll wait it out for a bit and see how he does.
We met Mary on Wednesday night. She's our trainer from the home medical company. She already did a home assessment on Thursday and has scheduled the first vent training session for Tuesday at our house. My mom and our neighbor Julie will start the training with me. Tim will be out of town next week, but will jump into the training sessions when he gets back. It'll take a couple weeks to complete all of the sessions, so we know Tom will be at Memorial for at least that long.
Our insurance company has approved Tom for nursing assistance at home when he's discharged. Once we get Tom home and settled in, we'll have nursing support for his care 12 hours a day. We'll start working with the prospective nurses at the hospital so they can get to know Tom and his gear and so we can get to know them.
At home, Henry, Joe and Sam are all doing very well - and are as cute as ever. They've started taking turns sleeping alone in a crib, as space was getting a little too tight any more to keep all 3 in the same crib together. Hopefully this will make the transition to their own cribs a little smoother when the time comes.
We also received some bittersweet news this week: our nurse/babysitter extraordinaire Becca has been offered a job at Riley's PICU. She has, of course, accepted the position and will start work there on Sept 28. We'll certainly miss her and her consistent, dependable help. Over the last few months she has become a part of our family and it will be difficult to see her go. We knew at the beginning that we couldn't keep her here forever (if we could only provide benefits...), but it's still sad to see her go. We'd like to invite all of you that have met and "worked" with Becca to send a note of thanks. Please snail mail a card to our home or email something to my email address and I'll collect them to present to her before she leaves. Thank you!
We met twice more with the photographer from the South Bend Tribune this week. He captured a few more photos at home and some sound bites to include on their website with our story. He also came to the hospital on Friday to get some shots of us with Tommy. I spoke with the journalist to confirm a few facts in the story and she promised that it will run on Sunday. If you live in the South Bend area and get the paper, please save your copy for us. And regardless of where you live, be sure to check out the newspaper's website for the photos and audio clips. As soon as I get the link from their website Sunday morning, I'll post it here on the blog.
Well, I think that covers it from our little corner of the world. Thanks again to all of the helpers at the house and to everyone for your continued love and support.
GO BLUE!
Kristin, Tim and the boys
Unfortunately, I can't figure out how to edit photos on this computer, so the shot is a little dark. Don't be fooled: his room is actually very bright with a huge east-facing window.
Tommy is starting his third morning here at South Bend Memorial Hospital. He is settling in pretty well. It is so nice to be back "home" and surrounded by familiar faces. Tom has been visited by no fewer than a half dozen people from the NICU already. His primary nurse Jugenia even offered to babysit for a while last night so Tim and I could go out for a bite to eat together. What a nice treat. Tommy really seemed to enjoy the time with his friend Jugenia and Tim and I loved the opportunity to catch up and just be with each other for a couple hours. Thank you Jugenia!!
We had some issues initially with Tom's ventillator when we arrived on Wednesday afternoon: they didn't have the LTV (home vent) here for him and they put him on the vent he was on before the LTV at Riley. Though this would probably not affect his overall time in the hospital, I couldn't help but see this as a step backward. He had to be stable on the LTV for a week before we could transfer him here. So what good could come of putting him back on the other vent? (especially since they were constantly tweaking his vent settings) Anyway, its all a moot point now. Later that night, we were able to get the LTV set up and running. He's back on the same settings as when he arrived, but doesn't quite seem to have found his groove yet. They say that each machine has it's own slight variations on how it manages the air flow - and these variations may feel different to Tom. His respiration rate has been unusually high - especially when he's at rest - but all of his numbers are sitting right where they were before we left Riley. So there's no real reason for concern. We'll wait it out for a bit and see how he does.
We met Mary on Wednesday night. She's our trainer from the home medical company. She already did a home assessment on Thursday and has scheduled the first vent training session for Tuesday at our house. My mom and our neighbor Julie will start the training with me. Tim will be out of town next week, but will jump into the training sessions when he gets back. It'll take a couple weeks to complete all of the sessions, so we know Tom will be at Memorial for at least that long.
Our insurance company has approved Tom for nursing assistance at home when he's discharged. Once we get Tom home and settled in, we'll have nursing support for his care 12 hours a day. We'll start working with the prospective nurses at the hospital so they can get to know Tom and his gear and so we can get to know them.
At home, Henry, Joe and Sam are all doing very well - and are as cute as ever. They've started taking turns sleeping alone in a crib, as space was getting a little too tight any more to keep all 3 in the same crib together. Hopefully this will make the transition to their own cribs a little smoother when the time comes.
We also received some bittersweet news this week: our nurse/babysitter extraordinaire Becca has been offered a job at Riley's PICU. She has, of course, accepted the position and will start work there on Sept 28. We'll certainly miss her and her consistent, dependable help. Over the last few months she has become a part of our family and it will be difficult to see her go. We knew at the beginning that we couldn't keep her here forever (if we could only provide benefits...), but it's still sad to see her go. We'd like to invite all of you that have met and "worked" with Becca to send a note of thanks. Please snail mail a card to our home or email something to my email address and I'll collect them to present to her before she leaves. Thank you!
We met twice more with the photographer from the South Bend Tribune this week. He captured a few more photos at home and some sound bites to include on their website with our story. He also came to the hospital on Friday to get some shots of us with Tommy. I spoke with the journalist to confirm a few facts in the story and she promised that it will run on Sunday. If you live in the South Bend area and get the paper, please save your copy for us. And regardless of where you live, be sure to check out the newspaper's website for the photos and audio clips. As soon as I get the link from their website Sunday morning, I'll post it here on the blog.
Well, I think that covers it from our little corner of the world. Thanks again to all of the helpers at the house and to everyone for your continued love and support.
GO BLUE!
Kristin, Tim and the boys
Tuesday, September 8, 2009
South Bend, here we come!
It's official - we've got written pre-approval from the insurance company and the folks in the PICU at Memorial Hospital are expecting us: Tommy's headed back to South Bend tomorrow. If home weren't so far away from Riley, we'd certainly be open to the idea of staying here until Tommy's ready to go home. The move to South Bend, however, will likely make life substantially less complicated for all of us. We've made some fast friends here in Indy and hope to keep in touch with them - even if only through our blog.
Tommy's ride (the ambulance) is scheduled to arrive at Riley to pick him up at 10am. For the ride to South Bend, I'll follow behind in the van, like Tim did on the way here 34 days ago (yeah - that's right - THIRTY-FOUR days). We're not sure yet how long to expect Tom to be at Memorial - we'll figure that out once we get there.
We know we need to wean Tom down on his resp rate on the ventillator (he's at 30 now and should be in the mid-20's before he were to be discharged), but his other vent settings are all perfectly acceptable for home. The other requirement to consider before his discharge is our training - and training for the other folks that will be taking care of him regularly at home.
Well, I need to get all our stuff packed up tonight. Tomorrow morning will be a bit crazy before we leave at 10am. Breathing treatments, feedings, loading the car, etc. We'll let everyone know how things are in South Bend once we get settled in.
Love Kristin & Tommy
Tommy's ride (the ambulance) is scheduled to arrive at Riley to pick him up at 10am. For the ride to South Bend, I'll follow behind in the van, like Tim did on the way here 34 days ago (yeah - that's right - THIRTY-FOUR days). We're not sure yet how long to expect Tom to be at Memorial - we'll figure that out once we get there.
We know we need to wean Tom down on his resp rate on the ventillator (he's at 30 now and should be in the mid-20's before he were to be discharged), but his other vent settings are all perfectly acceptable for home. The other requirement to consider before his discharge is our training - and training for the other folks that will be taking care of him regularly at home.
Well, I need to get all our stuff packed up tonight. Tomorrow morning will be a bit crazy before we leave at 10am. Breathing treatments, feedings, loading the car, etc. We'll let everyone know how things are in South Bend once we get settled in.
Love Kristin & Tommy
Monday, September 7, 2009
A couple more pics
I forgot that Aunt Jules sent me a couple photos that she took while visiting last weekend. But this doesn't mean Amy is off the hook for sending me the shots she took last week. :)
In the stripes, Sam is on the left, Joe in the middle and Henry on the right. My best guess on the activity mat photo is Joe, Sam, Henry from left to right. Jules, do you remember?
In the stripes, Sam is on the left, Joe in the middle and Henry on the right. My best guess on the activity mat photo is Joe, Sam, Henry from left to right. Jules, do you remember?
Sunday, September 6, 2009
Baby steps
Hi everyone
In the last couple weeks, Tommy has been making progress. He's been switched over to the home ventilator system - the LTV - and has been doing well on this vent. His CO2 levels haven't gone down as much as we had hoped, but they're at least holding steady. Tom has been gaining weight and tolerating his feedings very well. He's active and interactive with the nurses, physical therapists and (of course) his parents. He chomps on his pacifier and LOVES his mobile. (Looks like we'll be buying one for his crib at home just like the one he's got here in the Infant ICU...)
Tom's progress has impressed the docs so much that they've approved a transfer back to Memorial Hospital in South Bend. Our insurance company has also approved this - something very unusual in the world of private insurance. But considering the circumstances around Tom (3 brothers at home, the 3+ hour drive for his parents, and the others that need to get trach/vent training), they have agreed that the move back to South Bend is the best for all involved. Tom is scheduled to make the move on Wednesday; it was originally scheduled for Tuesday, but the folks at Memorial needed one more day to get things ready for Tom's arrival. Having him only 25 minutes from home should make life a bit easier for all of us. We don't know yet how long Tom will be at Memorial, but it is one baby step closer to home.
So I'll finish out our stay in Indy with Tom. Tim went home to enjoy the rest of the holiday weekend on Sunday afternoon. In the time he spent with Tom this weekend and last, Tim was able to accomplish a lot of training with Tom's trach. Tim attended a trach class, performed "trach care" (cleaning and changing the dressing around Tom's trach), and quite successfully completed 3 trach changes. One of those changes was a practice run on an "emergency trach change" where he performed a typically 2-man process by himself. What a pro. I've gotten much of the same training under my belt, but only 1 trach change so far. I guess I'm just not as brave as Tim is ... yet. I'm sure that will come in time...baby steps, right?...
At home we've had a continued string of wonderful helpers. Aunt Bonnie has been incredible and the boys have really taken to her. Last weekend "Aunt Jules" came to visit and help out. Then last week Aunt Rosie, cousin Amy and Grant hung out with the boys. We had to frisk Rosie before she left to make sure she wasn't trying to smuggle Henry, Joe or Sam out the door. :) This weekend Tim's parents are in town and with them is Uncle Tom. He's not only visiting the boys, but also Aunt Bonnie! There are no words to express our gratitude for their help - and the help of all those signed up to help in the coming weeks. We know we couldn't get thru this crazy time without you.
As we get closer to Tom's arrival at home, there are several things we need to implement at home and to consider for those that come to help - particularly those that will help out regularly with the boys. Among them are:
- Flu season: It will be particularly important for each visitor to be tuned in to his/her own health and exposure to those that are sick. Even a cold can turn into something much more serious for any of the boys - particularly Tom. If you're a regular helper, we'd like you to consider getting a flu shot.
- Inhaled irritants: Since Tom doesn't breathe through his nose or mouth, his air bypasses the natural filters built into our respiratory systems. We need to take extra steps to make sure particles and fumes in the air around Tommy are strictly limited. We will not be able to dust or vacuum when he's in the room. Aerosols are a big no-no; as are cleaners with chemical fumes and perfumes/colognes. Please refrain from wearing perfume or cologne when visiting.
As we learn more about what Tommy will need at home, we'll be sure to let everyone know. We'll want it to be as smooth a transition as possible - and we certainly appreciate your continued support to help make that happen. In the meantime, please enjoy the photos below... oh - and speaking of photos...
Alicia Gallegos, the journalist from the South Bend Tribune that interviewed us a few weeks after the boys were born, contacted me last week regarding a follow-up story. She and a photographer visited the house on Thursday to interview Tim before he came back to Indy. Then they came back on Friday to interview me. Alicia was hoping to get the story in the paper on Sunday, but weren't sure they had the resources over the weekend to set up the online slide show they hoped to incorporate. So watch for it online and in the paper on Monday. If for some reason the story doesn't make it into Monday's paper, I'll call Alicia on Tuesday to get the details and will let you know when the story will run.
Take care everyone - and thanks again for all your love and support. Please enjoy the photos below...
Love,
Kristin, Tim and the boys
This was taken a couple weeks ago when Papa Don and Uncle Mike came to visit Tommy before his trach surgery.
Shortly after Tom's trach surgery...Mr. No-neck...
The first day I got to hold Tommy since his g-tube surgery and after his trach surgery.
A couple shots of the fellas at home. Henry is in orange, Joe in blue and Sam in green. Too cute for words, eh? I'll have more cute photos of these 3 hooligans soon. (REMINDER to cousin Amy to send me those pics...)
Tommy last week with his physical therapist.
Mr. Sweetie Face
Daddy and Tommy - probably watching Sports Center...
Tommy loves his bouncy seat and mobile.
Mommy and Tommy
In the last couple weeks, Tommy has been making progress. He's been switched over to the home ventilator system - the LTV - and has been doing well on this vent. His CO2 levels haven't gone down as much as we had hoped, but they're at least holding steady. Tom has been gaining weight and tolerating his feedings very well. He's active and interactive with the nurses, physical therapists and (of course) his parents. He chomps on his pacifier and LOVES his mobile. (Looks like we'll be buying one for his crib at home just like the one he's got here in the Infant ICU...)
Tom's progress has impressed the docs so much that they've approved a transfer back to Memorial Hospital in South Bend. Our insurance company has also approved this - something very unusual in the world of private insurance. But considering the circumstances around Tom (3 brothers at home, the 3+ hour drive for his parents, and the others that need to get trach/vent training), they have agreed that the move back to South Bend is the best for all involved. Tom is scheduled to make the move on Wednesday; it was originally scheduled for Tuesday, but the folks at Memorial needed one more day to get things ready for Tom's arrival. Having him only 25 minutes from home should make life a bit easier for all of us. We don't know yet how long Tom will be at Memorial, but it is one baby step closer to home.
So I'll finish out our stay in Indy with Tom. Tim went home to enjoy the rest of the holiday weekend on Sunday afternoon. In the time he spent with Tom this weekend and last, Tim was able to accomplish a lot of training with Tom's trach. Tim attended a trach class, performed "trach care" (cleaning and changing the dressing around Tom's trach), and quite successfully completed 3 trach changes. One of those changes was a practice run on an "emergency trach change" where he performed a typically 2-man process by himself. What a pro. I've gotten much of the same training under my belt, but only 1 trach change so far. I guess I'm just not as brave as Tim is ... yet. I'm sure that will come in time...baby steps, right?...
At home we've had a continued string of wonderful helpers. Aunt Bonnie has been incredible and the boys have really taken to her. Last weekend "Aunt Jules" came to visit and help out. Then last week Aunt Rosie, cousin Amy and Grant hung out with the boys. We had to frisk Rosie before she left to make sure she wasn't trying to smuggle Henry, Joe or Sam out the door. :) This weekend Tim's parents are in town and with them is Uncle Tom. He's not only visiting the boys, but also Aunt Bonnie! There are no words to express our gratitude for their help - and the help of all those signed up to help in the coming weeks. We know we couldn't get thru this crazy time without you.
As we get closer to Tom's arrival at home, there are several things we need to implement at home and to consider for those that come to help - particularly those that will help out regularly with the boys. Among them are:
- Flu season: It will be particularly important for each visitor to be tuned in to his/her own health and exposure to those that are sick. Even a cold can turn into something much more serious for any of the boys - particularly Tom. If you're a regular helper, we'd like you to consider getting a flu shot.
- Inhaled irritants: Since Tom doesn't breathe through his nose or mouth, his air bypasses the natural filters built into our respiratory systems. We need to take extra steps to make sure particles and fumes in the air around Tommy are strictly limited. We will not be able to dust or vacuum when he's in the room. Aerosols are a big no-no; as are cleaners with chemical fumes and perfumes/colognes. Please refrain from wearing perfume or cologne when visiting.
As we learn more about what Tommy will need at home, we'll be sure to let everyone know. We'll want it to be as smooth a transition as possible - and we certainly appreciate your continued support to help make that happen. In the meantime, please enjoy the photos below... oh - and speaking of photos...
Alicia Gallegos, the journalist from the South Bend Tribune that interviewed us a few weeks after the boys were born, contacted me last week regarding a follow-up story. She and a photographer visited the house on Thursday to interview Tim before he came back to Indy. Then they came back on Friday to interview me. Alicia was hoping to get the story in the paper on Sunday, but weren't sure they had the resources over the weekend to set up the online slide show they hoped to incorporate. So watch for it online and in the paper on Monday. If for some reason the story doesn't make it into Monday's paper, I'll call Alicia on Tuesday to get the details and will let you know when the story will run.
Take care everyone - and thanks again for all your love and support. Please enjoy the photos below...
Love,
Kristin, Tim and the boys
This was taken a couple weeks ago when Papa Don and Uncle Mike came to visit Tommy before his trach surgery.
Shortly after Tom's trach surgery...Mr. No-neck...
The first day I got to hold Tommy since his g-tube surgery and after his trach surgery.
A couple shots of the fellas at home. Henry is in orange, Joe in blue and Sam in green. Too cute for words, eh? I'll have more cute photos of these 3 hooligans soon. (REMINDER to cousin Amy to send me those pics...)
Tommy last week with his physical therapist.
Mr. Sweetie Face
Daddy and Tommy - probably watching Sports Center...
Tommy loves his bouncy seat and mobile.
Mommy and Tommy
Friday, August 28, 2009
Thursday, August 27, 2009
Another update
First - I had started a "thank you" post to all our helpers a couple weeks ago. I finally finished it and posted it tonight. But it was posted under the original date. To read it, please go to the Aug 14 post "To all our helpers".
Since my last post, Tom has been doing pretty well - as have his brothers. And as for Tim and me, we're hanging in there.
I was finally able to hold Tom last Thursday. It had been nearly 2 weeks since the last time we got to hold him - before his g-tube/nissan surgery. I held him once in the morning and once in the afternoon. In the afternoon, he smiled at me. It was wonderful.
Tim took over in Indy for a long weekend on Thursday. Tom's ventillator settings and CO2 levels yo-yo'd all weekend and through this week so far. Overall, Tom has been stable. We've just been trying to find that "sweet spot" in ventillator settings that would bring down his CO2 levels - and keep them down. No such luck so far. He had his first trach change on Monday. We can now use some special rubberbands to help keep his ventillator tubing attached to the trach - thereby greatly reducing the risk of his chubby cheeks knocking the tube loose. In addition to the rubberbands, Tom also sports a trach holder or trach ties around the back of his neck, fastened to the "wings" on the trach. (Thank you to Tim's cousin Sue for the trach holder samples!) Unfortunately, the trach ties and the trach itself have created some very tender areas on his neck, but the nurses assure me these will heal and in time Tom will sport his new accessory without any discomfort. Tom was moved to the Infant ICU on Monday night. This is a specialized 6-bed unit where all the patients are infants on trachs. The focus here is development and training - for the patients and their parents. This is definitely the right place for Tom to be.
Before I forget, I also wanted to mention that a couple of the staff here at Riley have definitely earned a shout-out here on the blog. Will is a respiratory therapist that was assigned to Tom before his trach surgery. He went out of his way to get Tom the newer model ventillator that he's currently on. Since then, I've run into Will a few times in the halls of the hospital. Not only has he remembered who I am, but has even remembered Tom's name. He caught me in the hall the other day while I was nose-down in my BlackBerry: "Hey, how's Thomas doing?" Will had only taken care of Tom for one day, but he still remembered him and wanted to know how he was. That's pretty special, if you ask me.
Another person who's earned a special mention is Ann - one of the nurses in the PICU. She was assigned to Tom a couple times, then asked us if it were okay if she requested to be one of his primary nurses. We love Ann. She knows her stuff, is very pleasant, gets things done - and does them on time, and most importantly she spoils Tom. We were sad to leave the PICU because Ann had gone out of her way to get mobiles, music and all sorts of stuff for Tommy. I'm sure Tom misses all of her sweet talk and attention too!
So anyway... Late last week, we got some great news from our insurance company: They've approved a back-transfer to South Bend. This is something that is typically never approved. Once Tom gets on the home vent system (they call it the LTV - short for "laptop vent" because of it's relative size) and is stable for about a week, he can be transferred. This will make things easier on many fronts. Obviously, it'll be easier for Tim and me to split our time between hospital and home when the hospital is only 25 minutes away - instead of over 3 hours away. But more important for the long term, moving Tom back to South Bend will enable our ventillator/home care training to take place in South Bend and anyone else that we'd like to have the same training can participate in South Bend - instead of making the trek down to Indy.
As of this afternoon, the plan for Tom is to make one more change to his vent settings tomorrow morning. The new settings can be replicated on the LTV, so hopefully he'll tolerate the change well. If all goes well, we'll keep him on these settings thru the weekend then on Monday or Tuesday we'll make an attempt at changing over to the LTV. In the meantime, since the variations in vent settings over the last week haven't had much of an impact on his CO2, we're doing one more short course of steroids. The docs aren't convinced they'll make much of a change, but feel it is definitely worth the attempt. He'll be back on "the juice" for 5 days. Hopefully this won't add too much more volume to his already way-too-fluffy cheeks. :)
Though Tom's lungs are among the worst these docs have seen, the docs have all reassured us that he will outgrow much of this. It's just going to take time.
Tim will come down tomorrow to take over for a few days. I'll head home to help Bonnie manage the three hooligans at home, then we'll make the swap again early next week. And so goes our "new normal".
Finally, here are a few pics. Our camera is at home, so I hope to get some more recent photos on the blog this weekend. In the meantime, please enjoy these:
Intubated Tom - pre-trach surgery
Tim & Kristin next to Tommy's bed in the PICU at Riley
Proud Papa Don with Tommy
This is the doll that Tim has affectionately named Patty Picu, due to it's androgenous appearance. Tom's nurse Ann lent us this doll so we could get familiar with how Tom's trach would look and work.
Well, it's very late. Tom is asleep - so I should be too. More to come soon. Thanks for all your positive thoughts and prayers!
Lots of love, Tim & Kristin
Since my last post, Tom has been doing pretty well - as have his brothers. And as for Tim and me, we're hanging in there.
I was finally able to hold Tom last Thursday. It had been nearly 2 weeks since the last time we got to hold him - before his g-tube/nissan surgery. I held him once in the morning and once in the afternoon. In the afternoon, he smiled at me. It was wonderful.
Tim took over in Indy for a long weekend on Thursday. Tom's ventillator settings and CO2 levels yo-yo'd all weekend and through this week so far. Overall, Tom has been stable. We've just been trying to find that "sweet spot" in ventillator settings that would bring down his CO2 levels - and keep them down. No such luck so far. He had his first trach change on Monday. We can now use some special rubberbands to help keep his ventillator tubing attached to the trach - thereby greatly reducing the risk of his chubby cheeks knocking the tube loose. In addition to the rubberbands, Tom also sports a trach holder or trach ties around the back of his neck, fastened to the "wings" on the trach. (Thank you to Tim's cousin Sue for the trach holder samples!) Unfortunately, the trach ties and the trach itself have created some very tender areas on his neck, but the nurses assure me these will heal and in time Tom will sport his new accessory without any discomfort. Tom was moved to the Infant ICU on Monday night. This is a specialized 6-bed unit where all the patients are infants on trachs. The focus here is development and training - for the patients and their parents. This is definitely the right place for Tom to be.
Before I forget, I also wanted to mention that a couple of the staff here at Riley have definitely earned a shout-out here on the blog. Will is a respiratory therapist that was assigned to Tom before his trach surgery. He went out of his way to get Tom the newer model ventillator that he's currently on. Since then, I've run into Will a few times in the halls of the hospital. Not only has he remembered who I am, but has even remembered Tom's name. He caught me in the hall the other day while I was nose-down in my BlackBerry: "Hey, how's Thomas doing?" Will had only taken care of Tom for one day, but he still remembered him and wanted to know how he was. That's pretty special, if you ask me.
Another person who's earned a special mention is Ann - one of the nurses in the PICU. She was assigned to Tom a couple times, then asked us if it were okay if she requested to be one of his primary nurses. We love Ann. She knows her stuff, is very pleasant, gets things done - and does them on time, and most importantly she spoils Tom. We were sad to leave the PICU because Ann had gone out of her way to get mobiles, music and all sorts of stuff for Tommy. I'm sure Tom misses all of her sweet talk and attention too!
So anyway... Late last week, we got some great news from our insurance company: They've approved a back-transfer to South Bend. This is something that is typically never approved. Once Tom gets on the home vent system (they call it the LTV - short for "laptop vent" because of it's relative size) and is stable for about a week, he can be transferred. This will make things easier on many fronts. Obviously, it'll be easier for Tim and me to split our time between hospital and home when the hospital is only 25 minutes away - instead of over 3 hours away. But more important for the long term, moving Tom back to South Bend will enable our ventillator/home care training to take place in South Bend and anyone else that we'd like to have the same training can participate in South Bend - instead of making the trek down to Indy.
As of this afternoon, the plan for Tom is to make one more change to his vent settings tomorrow morning. The new settings can be replicated on the LTV, so hopefully he'll tolerate the change well. If all goes well, we'll keep him on these settings thru the weekend then on Monday or Tuesday we'll make an attempt at changing over to the LTV. In the meantime, since the variations in vent settings over the last week haven't had much of an impact on his CO2, we're doing one more short course of steroids. The docs aren't convinced they'll make much of a change, but feel it is definitely worth the attempt. He'll be back on "the juice" for 5 days. Hopefully this won't add too much more volume to his already way-too-fluffy cheeks. :)
Though Tom's lungs are among the worst these docs have seen, the docs have all reassured us that he will outgrow much of this. It's just going to take time.
Tim will come down tomorrow to take over for a few days. I'll head home to help Bonnie manage the three hooligans at home, then we'll make the swap again early next week. And so goes our "new normal".
Finally, here are a few pics. Our camera is at home, so I hope to get some more recent photos on the blog this weekend. In the meantime, please enjoy these:
Intubated Tom - pre-trach surgery
Tim & Kristin next to Tommy's bed in the PICU at Riley
Proud Papa Don with Tommy
This is the doll that Tim has affectionately named Patty Picu, due to it's androgenous appearance. Tom's nurse Ann lent us this doll so we could get familiar with how Tom's trach would look and work.
Well, it's very late. Tom is asleep - so I should be too. More to come soon. Thanks for all your positive thoughts and prayers!
Lots of love, Tim & Kristin
Wednesday, August 19, 2009
New Photos!
Hi! It's Katie, just thought I would post some pictures of the boys here at home. Hopefully we can post some of Tommy tomorrow!
Tuesday, August 18, 2009
A Good Day for Tommy
Tom had a good day today. When the surgeon stopped by this morning, we talked about what the doc called Tom's "short neck". I told him "short" would be a generous description. :) Tom had some good awake time (during which we "danced" to his Baby Einstein tunes and reintroduced his pacifier - which he LOVES) and some good sleep time. He seems to be recovering well and adjusting to his new contraption. It's just so nice to see him in a good mood. He's even been making eyes and smiling at some of the nurses...he prefers blondes.
We're weaning him gradually on the ventillator. He was at 80% oxygen last night and is down to 60% tonight. We're watching his blood gases closely and using them as a guide to make adjustments on the ventillator. He's still holding steady at 30 breaths per minute, but hopefully yet this week we can take that down a couple notches too.
The docs want to get a solid 48 hours of recovery in before we try to hold Tommy - so maybe as early as late tomorrow afternoon, I'll be able to hold him. We'll see how his day goes tomorrow.
All of your comments are so caring and thoughtful. Thanks for all your support. We'll be in touch again soon.
Lots of love from Indy,
Kristin & Tommy
P.S. I talked to Tim last night after he got home to Henry, Joe & Sam. It had been 2 weeks since he last saw them. Tim's reaction: "They're huge!" :) They're so huge that the pediatrician has approved for us to try a 6-hour stretch at night between feedings. We'll see how it goes...Good luck tonight, Tim and Katie!!
We're weaning him gradually on the ventillator. He was at 80% oxygen last night and is down to 60% tonight. We're watching his blood gases closely and using them as a guide to make adjustments on the ventillator. He's still holding steady at 30 breaths per minute, but hopefully yet this week we can take that down a couple notches too.
The docs want to get a solid 48 hours of recovery in before we try to hold Tommy - so maybe as early as late tomorrow afternoon, I'll be able to hold him. We'll see how his day goes tomorrow.
All of your comments are so caring and thoughtful. Thanks for all your support. We'll be in touch again soon.
Lots of love from Indy,
Kristin & Tommy
P.S. I talked to Tim last night after he got home to Henry, Joe & Sam. It had been 2 weeks since he last saw them. Tim's reaction: "They're huge!" :) They're so huge that the pediatrician has approved for us to try a 6-hour stretch at night between feedings. We'll see how it goes...Good luck tonight, Tim and Katie!!
Monday, August 17, 2009
The Trach is In
This update will be short and sweet. My computer took a crap today, so I'm using the "public" computer in the PICU parent lounge. Tim went home today to see the Henry, Joe and Sam and to spend a little time at the office. Since it's just me and Tommy down here in Indy, I don't want to be away from him for very long if I can avoid it.
Anyway, this morning we discovered that Tom's hemoglobin was pretty low, so he received blood before surgery. He also got bumped further down the surgical schedule, so his 11am surgery didn't happen until around 3pm.
The procedure took about an hour and went very well. He has a "cuffed" trach tube - meaning it has an inflatable cuff at the bottom of the tube. This cuff can be inflated to hold the tube in place and to secure or close off the airway around the tube - keeping the important oxygen flowing in the direction it needs to be flowing. Right now, the cuff itself - in its deflated state - is enough to secure the airway and tighten up any air leaks.
His huge cheeks, multiple chins and lack of neck make it look a little uncomfortable, but he seems to handle it pretty well. He just has to turn his head to the side so his chin doesn't run into the tubing that attaches to the ventillator. When he gets feisty and starts moving around, the little bugger actually knocks the tube loose. Bells and whistles go off and people come running, but all it takes is a gentle push to put the tubing back together. We've run that drill twice already and the trach is only a few hours old. :) It could be a long night...
Thank you to everyone for all your prayers and positive vibes. They are certainly paying off so far. Tom asked me to send a special shout out to his brothers at home and to ask them to save a spot for him in the tubby time lineup. He also wants to say "hey" to his peeps at the Memorial NICU. Thanks for all you did to make him healthy and strong - he's tapping into those resources this week for sure.
Photos coming soon...stay tuned...
Lots of love, Kristin, Tim and Tommy
Anyway, this morning we discovered that Tom's hemoglobin was pretty low, so he received blood before surgery. He also got bumped further down the surgical schedule, so his 11am surgery didn't happen until around 3pm.
The procedure took about an hour and went very well. He has a "cuffed" trach tube - meaning it has an inflatable cuff at the bottom of the tube. This cuff can be inflated to hold the tube in place and to secure or close off the airway around the tube - keeping the important oxygen flowing in the direction it needs to be flowing. Right now, the cuff itself - in its deflated state - is enough to secure the airway and tighten up any air leaks.
His huge cheeks, multiple chins and lack of neck make it look a little uncomfortable, but he seems to handle it pretty well. He just has to turn his head to the side so his chin doesn't run into the tubing that attaches to the ventillator. When he gets feisty and starts moving around, the little bugger actually knocks the tube loose. Bells and whistles go off and people come running, but all it takes is a gentle push to put the tubing back together. We've run that drill twice already and the trach is only a few hours old. :) It could be a long night...
Thank you to everyone for all your prayers and positive vibes. They are certainly paying off so far. Tom asked me to send a special shout out to his brothers at home and to ask them to save a spot for him in the tubby time lineup. He also wants to say "hey" to his peeps at the Memorial NICU. Thanks for all you did to make him healthy and strong - he's tapping into those resources this week for sure.
Photos coming soon...stay tuned...
Lots of love, Kristin, Tim and Tommy
Saturday, August 15, 2009
More Surgery
Well, Tom has been pretty stable for a couple days now. His ventillator support hasn't really changed much. His blood gases have been pretty consistent. And for the most part, he seems to be comfortable (except, of course, when he coughs up the mucus in his chest and throat caused by the irritation of the ventillator tube).
We started the full dose of the "viagra" meds today - it's actually called sildenofil. Tom's blood pressure has been gradually getting lower, but is still in a good range to continue this medication. It doesn't seem to be having a profound effect on his pulmonary hypertension, but is at least helping.
Each morning we're invited to participate in rounds with the doctors and other PICU staff. Some days I think they regret inviting me to join in. :) I'm sure those of you that know me best - and those from the NICU at Memorial - can imagine the scene: notebook in hand, pen poised and a list of questions at the ready. I have to say that I'm thankful for the opportunity to get in front of them to ask my questions. I've been able to affect change in Tom's care and have brought issues to their attention. Let's just hope I don't annoy them too much before we move out of the PICU. I don't want to become one of "those" parents...
Twice a week, Tom will spend time each with physical therapists and occupational therapists. They'll work with him on movement, flexibility, developmental milestones, etc. This will help make sure he doesn't get too far behind in his overall development while in the hospital. A dietician even stopped by this week. She took some measurements and made some changes to Tom's feedings to ensure he gets enough calories to support healthy growth and development.
Yesterday (Friday) we met with Dr. Ackerman and a couple other folks on her team. We discussed our options for Tom's long-term plan and agreed the best option is the tracheostomy (or trach) and ventillator. This will give Tom the best opportunity to be the healthiest he can be.
A tracheostomy is an opening in the front of his neck that lets air move from the outside (he'll have a ventillator to do this) into the trachea (windpipe) and lungs. A trach tube is put in the opening thru the skin and into the trachea. The procedure is scheduled for 11:00am on Monday. It should take about an hour. The same surgeon that did his nissan and put in his G-tube will also do this surgery.
Following surgery, Tom will need to stay in the hospital for about 4 weeks - give or take, depending on a number of different things. The trach tube will remain in place with stitches for the first week so the channel to the trachea can heal. This is much like getting your ears pierced - the channel thru your ear lobe heals so the post of your earring goes thru it without any pain or discomfort. He'll be hooked up to a ventillator coming out of surgery and will eventually be switched over to the ventillator system that he'll use at home. After the first week, we'll begin to get training on how to care for Tom, his trach and his ventillator. Once we get to that point, we will look into the possibility of transferring him back to South Bend to complete his recovery and our training. If our insurance company doesn't like that idea, however, we'll do all of this in Indy.
When Tom comes out of recovery from surgery, he'll come back to his room in the PICU. Once a bed opens up (one is scheduled to open August 24) in the Infant ICU, we'll move there. This is a 6-bed unit filled with infants on trachs and ventillators. We visited the unit earlier this week and the babies seem very well cared for - and loved. We met a boy not much older than Tom that was happy, mobile and obviously loved his nurse. This is where we'll spend the rest of Tom's time in the hospital.
So we've still got a long road ahead - even after we bring Tom home from the hospital. He'll have the trach and ventillator for quite some time. It's difficult to estimate, but most kids like Tom have their trachs 18-24 months. Let's hope it's not that long for Tom. But even if it is, at least he'll be mobile and able to play (with limitations, of course). He won't be stuck in a bed like he is now with a regular ventillator tube in his throat. We'll be able to take him out - with some additional gear and extra effort. And most importantly, he'll be able to interact and play with his brothers.
We're moving tonight to another room in the PICU - a little quieter and a better location for nursing assignments. We don't have a phone in our room and we're not supposed to use our cell phones in the unit. So if you need to get in touch with us in a hurry, call the unit directly and ask to speak to Tom's family. The number is (317) 274-2871. Otherwise, continue to call the house, call our cell phones or email us as needed. We'll be in touch!
Thank you to everyone for your continued support and prayers.
Kristin, Tim and Tommy
We started the full dose of the "viagra" meds today - it's actually called sildenofil. Tom's blood pressure has been gradually getting lower, but is still in a good range to continue this medication. It doesn't seem to be having a profound effect on his pulmonary hypertension, but is at least helping.
Each morning we're invited to participate in rounds with the doctors and other PICU staff. Some days I think they regret inviting me to join in. :) I'm sure those of you that know me best - and those from the NICU at Memorial - can imagine the scene: notebook in hand, pen poised and a list of questions at the ready. I have to say that I'm thankful for the opportunity to get in front of them to ask my questions. I've been able to affect change in Tom's care and have brought issues to their attention. Let's just hope I don't annoy them too much before we move out of the PICU. I don't want to become one of "those" parents...
Twice a week, Tom will spend time each with physical therapists and occupational therapists. They'll work with him on movement, flexibility, developmental milestones, etc. This will help make sure he doesn't get too far behind in his overall development while in the hospital. A dietician even stopped by this week. She took some measurements and made some changes to Tom's feedings to ensure he gets enough calories to support healthy growth and development.
Yesterday (Friday) we met with Dr. Ackerman and a couple other folks on her team. We discussed our options for Tom's long-term plan and agreed the best option is the tracheostomy (or trach) and ventillator. This will give Tom the best opportunity to be the healthiest he can be.
A tracheostomy is an opening in the front of his neck that lets air move from the outside (he'll have a ventillator to do this) into the trachea (windpipe) and lungs. A trach tube is put in the opening thru the skin and into the trachea. The procedure is scheduled for 11:00am on Monday. It should take about an hour. The same surgeon that did his nissan and put in his G-tube will also do this surgery.
Following surgery, Tom will need to stay in the hospital for about 4 weeks - give or take, depending on a number of different things. The trach tube will remain in place with stitches for the first week so the channel to the trachea can heal. This is much like getting your ears pierced - the channel thru your ear lobe heals so the post of your earring goes thru it without any pain or discomfort. He'll be hooked up to a ventillator coming out of surgery and will eventually be switched over to the ventillator system that he'll use at home. After the first week, we'll begin to get training on how to care for Tom, his trach and his ventillator. Once we get to that point, we will look into the possibility of transferring him back to South Bend to complete his recovery and our training. If our insurance company doesn't like that idea, however, we'll do all of this in Indy.
When Tom comes out of recovery from surgery, he'll come back to his room in the PICU. Once a bed opens up (one is scheduled to open August 24) in the Infant ICU, we'll move there. This is a 6-bed unit filled with infants on trachs and ventillators. We visited the unit earlier this week and the babies seem very well cared for - and loved. We met a boy not much older than Tom that was happy, mobile and obviously loved his nurse. This is where we'll spend the rest of Tom's time in the hospital.
So we've still got a long road ahead - even after we bring Tom home from the hospital. He'll have the trach and ventillator for quite some time. It's difficult to estimate, but most kids like Tom have their trachs 18-24 months. Let's hope it's not that long for Tom. But even if it is, at least he'll be mobile and able to play (with limitations, of course). He won't be stuck in a bed like he is now with a regular ventillator tube in his throat. We'll be able to take him out - with some additional gear and extra effort. And most importantly, he'll be able to interact and play with his brothers.
We're moving tonight to another room in the PICU - a little quieter and a better location for nursing assignments. We don't have a phone in our room and we're not supposed to use our cell phones in the unit. So if you need to get in touch with us in a hurry, call the unit directly and ask to speak to Tom's family. The number is (317) 274-2871. Otherwise, continue to call the house, call our cell phones or email us as needed. We'll be in touch!
Thank you to everyone for your continued support and prayers.
Kristin, Tim and Tommy
Updated Pictures!
Hi! It's Katie :)
Enjoy!
Henry, Addie and Joey
Addie and Joey
Joey
Sammy
Henry
Addie and I came down on Wednesday to help out with the boys. I have enjoyed spending time with them and of course have staged several photo shoots already :) Hopefully I can figure out how to get them posted and get their names right too!
Enjoy!
Addie and Joey
Joey
Sammy
Henry
All 3 boys asleep in their bed :)
Sammy, Joey and Henry (I think in that order), sending a message out to Tommy :) (this was Becca's idea, isn't it cute?!)
Friday, August 14, 2009
To all our helpers
In our recent posts, we've neglected to mention all the wonderful help we've had for the boys at home.
At a moment's notice, my mom was able to get a week off work and was here the night Tom was moved to Riley. With the help of Becca, our nurse/babysitter/lifesaver they held down the fort for the first week. When mom had to head back home, our sister-in-law Katie took over as our "home base" person. The glue that held it all together our first 12 or so days in Indy is Don, Tim's dad. What a trooper! Pat, Tim's mom, has been down a couple times during Tom's stint in the hospital and Natalie, our 13-year-old neighbor and baby-slinging prodigy, has been amazing. Before school started, she stayed the night at our house several nights to make sure someone else got a chance to sleep. Now, Tim's Aunt Bonnie is at the helm and plans to stay until we "kick her out". As I understand it, she runs a very tight ship - which is exactly what we need!
In addition to all of these "home base" helpers, we've had a constant procession of other helpers at all hours of the day and night. These helpers include friends and neighbors from the area - and even from hours away. We can't thank you enough - all of you. We certainly couldn't divide our time between home and Indy without each and every one of you.
Since Tim and I are spending so much time away from the three boys at home, we've instituted a sort of guest book. When/if you come to help us out, please write a little note in our guest book. Be sure to include the date and time that you hung out with Henry, Joe and Sam. Tell us how well the boys ate or what fun things they did to entertain you. Our hope is that we won't feel quite as removed from their daily lives if we can share your experiences with them.
They say it takes a village to raise a child...well, I guess you could say we've recruited an entire city's worth of people to raise ours. And we couldn't be more grateful.
All our love and appreciation,
Tim, Kristin & the boys
At a moment's notice, my mom was able to get a week off work and was here the night Tom was moved to Riley. With the help of Becca, our nurse/babysitter/lifesaver they held down the fort for the first week. When mom had to head back home, our sister-in-law Katie took over as our "home base" person. The glue that held it all together our first 12 or so days in Indy is Don, Tim's dad. What a trooper! Pat, Tim's mom, has been down a couple times during Tom's stint in the hospital and Natalie, our 13-year-old neighbor and baby-slinging prodigy, has been amazing. Before school started, she stayed the night at our house several nights to make sure someone else got a chance to sleep. Now, Tim's Aunt Bonnie is at the helm and plans to stay until we "kick her out". As I understand it, she runs a very tight ship - which is exactly what we need!
In addition to all of these "home base" helpers, we've had a constant procession of other helpers at all hours of the day and night. These helpers include friends and neighbors from the area - and even from hours away. We can't thank you enough - all of you. We certainly couldn't divide our time between home and Indy without each and every one of you.
Since Tim and I are spending so much time away from the three boys at home, we've instituted a sort of guest book. When/if you come to help us out, please write a little note in our guest book. Be sure to include the date and time that you hung out with Henry, Joe and Sam. Tell us how well the boys ate or what fun things they did to entertain you. Our hope is that we won't feel quite as removed from their daily lives if we can share your experiences with them.
They say it takes a village to raise a child...well, I guess you could say we've recruited an entire city's worth of people to raise ours. And we couldn't be more grateful.
All our love and appreciation,
Tim, Kristin & the boys
Thursday, August 13, 2009
112 Days...and more
Hi everyone. This post is long overdue. As you can imagine life at Chez Coleman is a little busy and as my brother mentioned in a comment a couple posts ago, typing is not high on the priority list when there are diapers to change, mouths to feed and babies to cuddle. Before I get into Tommy's current status, I want to fill you in on some of the story that got us where we are today.
So, as you may recall, Tom was on his own in the NICU at Memorial as of May 31 when we brought Joey home. The nurses and other staff were very generous with their love and attention for Tom - and we thank them for that. It made it easier to leave him "alone" knowing he would get plenty of lovin' from the folks there. During his solo weeks in the NICU, Tom faced a lot of challenges and toughed it out like the strongest of fighters.
The week Joe came home, Tom had gone back on CPAP - again. The treatment this time: diuretics, steroids & a VERY gradual weaning of his oxygen/air flow support. The diuretics help to get rid of excess fluid in his lungs - which is part of the process with chronic lung disease (or BPD: broncho pulmonary displasia). About a month before, we tried a very low dose, short course of steroids to help stimulate lung growth and development to fight his BPD, but didn't see any remarkable results. This time we increased the dose and the length of treatment - and were fortunate to see some decent results. We were able to very slowly take him from CPAP, to high flow cannula, to "off the wall" oxygen - similar to the system we have for him at home.
During that time, Vitale explained pulmonary hypertension to us, as this is a typical by-product of BPD. If Tom had pulmonary hypertension at the time, it seemed to be mild at most according to the echo of his heart. So they raised his oxygen saturation limits to keep his oxygenation higher. (Oxygen helps dilate blood vessels, which helps with the hypertension.) The docs didn't feel that Tom needed to go on any meds to treat it at this time. Though he did start medication to treat systemic hypertension (your run-of-the-mill high blood pressure).
In the midst of all this, Tom underwent a couple swallow studies. They confirmed that he has reflux and is indeed aspirating when swallowing - meaning, when he swallows, some of his food goes down his windpipe into his lungs. He unfortunately wasn't even coughing to get the milk out. Not a good thing for many reasons, but mostly because his lungs are already at a disadvantage with BPD. We did the study twice 3 weeks apart - and saw the same results both times. When he was finally discharged from the NICU last month, it was still too dangerous for him to take feedings by mouth, so he came home with the nasal gavage (NG) feeding tube as he had in the NICU.
A few days after Tom's second swallow study, we did what Vitale called a "milk study" to check for aspirating during reflux. Tom was given a feeding through his NG tube with some sort of radio active material added to the breast milk. Four hours later, they took a picture that captured all the traces of radioactive particles where the milk had gone in his body. That test did not confirm that he was aspirating when he refluxed and we were happy to hopefully rule out reflux as a contributor to his lung issues. In hindsight, our elation and relief were a bit premature.
Prior to discharge, we had lengthy discussions with Vitale and a handful of the NICU nurses regarding the option to have a couple surgical procedures done on Tom. First would be to put in a "G tube". This feeding tube provides a direct line to the stomach thru his belly, eliminating the need for the somewhat invasive NG tube down his throat. The second procedure would be a nissan - which uses the top of the stomach to sort of cinch-up the valve between the stomach and esophogus. These procedures would help with both reflux and swallowing - 2 issues Tom faces. Knowing he would most likely outgrow these issues, we opted to wait on the surgery for now. The stress of a surgical procedure and the risks involved outweighed the potential benefits...at the time.
After 112 days, we brought Tommy home from the NICU on Thursday, July 9. In addition to his NG tube, and nasal cannula with 3/4 liter of oxygen, he came home with a variety of medications. Needless to say, it was overwhelming to manage Tom and his needs on top of the requirements of his three brothers. The first few days were very stressful, but then we began to find our groove and it began to feel like our "new normal".
The night of July 21 and morning of July 22 Tom was having a rough time with coughing/choking spells at home. We took him to see the pediatrician. She made some changes to his medications and we seemed to see an improvement on the 23rd and 24th. On the 25th, his coughing got worse and the pediatrician decided to admit Tom to the pediatric unit at Memorial. Unfortunately, this cancelled Tim's trip to Indy with our neighbor Dave to the Brickyard NASCAR race. Instead we began a 5-day hospital stay with Tom. The level of care is certainly much different in Peds vs. the NICU. We agreed early on that one of us would stay by Tom's side for his entire stay. At the end of 5 days, Tom's oxygen requirements came down to where he was at home and his coughing fits seemed to be subsiding. There really wasn't much more the docs were prepared to do for him, so Tom was discharged and he continued to hold his own for a couple more days. On Thursday, July 30, Tom had his final appointment with the eye specialist and handled the exam like a champ. But when we got home, I noticed that he was very pale. I chalked it up to the stress of the eye exam and being late for his feeding. So we fed him and waited for his color to improve, but it didn't. I called the pediatrician and made arrangements to take him to the after hours clinic - luckily our doctor was on duty that night.
When we arrived at the clinic, Tom's oxygen saturation was very low - and even after 2 Albuterol breathing treatments it only got into the low 80s (it should be in the high 90s). That, in addition to his poor coloring, encouraged the doctor to admit him. This time we went to the Peds ICU (PICU). Upon admission, the nurses drew blood gases on Tom. His numbers were alarming enough to prompt a 2nd draw. His CO2 should have been in the 50s or even as high as the 60s but was at 128. They put him on 3 liters of high flow support at 100% oxygen. And he stayed at that level of support for a day or 2 before we were able to wean it down at all.
Call us naive - or just ignorant to the ins and outs of BPD - but we still believed that Tom would recover, get back to his 3/4 liter oxygen level and we'd take him home in a few days. Perhaps the doctors' words fell on our deaf (read: optimistic) ears. Or perhaps even they didn't catch on to just how serious Tom's condition was (and still is). We had discussions about BPD, pulmonary hypertension and other issues - but it still never settled in that our little guy was fighting much harder than we thought.
The PICU doctors raised the question again about the surgical procedures to address Tom's reflux problems. Taking reflux and risk of aspiration out of the mix could not only make Tom much more comfortable, but could give his lungs a better chance of "fixing themselves" faster and enable him to grow faster and healthier. By merely looking at the mechanics of it: Tom's NG tube was running thru his throat and down into his stomach. He's got issues with swallowing and keeping the valve between his esophogus and stomach closed. Taking the tube out of the mix would enable better swallowing and lessen reflux. So we agreed to do them both, but we knew the best place to get them done is at Riley Children's Hospital in Indianapolis. Tom's PICU doctor made a couple calls and on Wednesday, August 5 Tom was transported by ambulance from South Bend to Indy. Tim followed behind in our car and I came down the next day.
Tom was admitted to Riley's Infant Unit. On August 6 Tom got an upper GI in prep for his surgeries. Everything looked good, so he was slated for surgery on the 7th. Tim and I stayed in his hospital room the night before surgery and I was able to carry him in my arms to the surgical prep area before the procedure.
Surgery went well - though it took a bit longer than average. They were able to avoid a large incision and instead did the procedure lapriscopically (sp?). Given Tom's lung issues, it took a bit of extra effort on the surgeon's part, but he was able to successfuly perform both procedures without any complications. The complications came up AFTER surgery...
At first, Tom was resistant to waking up from the anesthesia. Then he was showing a marked resistance to weaning off the ventillator used for the procedure. A few hours later, they made room for us in the PICU and set Tom up for the night. We hoped to gradually wean him off the vent and get him back on high flow or regular nasal cannula by the following day...but no such luck. Tim and I were very frustrated, feeling that if these docs would only give our tough guy a chance, he could show them just how strong he is. We'd seen him bounce back so many times before - in the NICU and since discharge - and we honestly believed he could do it again.
Then Monday morning Dr. Ackerman came on duty in the NICU. She is on staff and is the woman in charge this week. She just happens to have 20+ years with kids that have severe BPD and pulmonary hypertension. Days later and with several tests to confirm and frank chats - we now know that's exactly what Tom has. Thanks to Dr. Ackerman's direct approach and years of experience to draw upon, we're now understanding just how tough our little fighter is.
Six days post-surgery, Tom's still on the ventillator. We've discovered that his CO2 has continued to be higher than the acceptable range. We're monitoring his CO2 levels via blood draws thru his PIC line every 4 hours and using that information to determine if we can wean him off the ventillator support gradually. We've introduced meds (the same ingredient in Viagra actually - it's a great blood vessel dilator) to address his hypertension and help with this exchange of CO2 for O2. The doc is hopeful but not optimistic that the meds alone will have much of an impact. We'll discuss it further with the doc tomorrow, but the best option for Tom may be a trachea tube and ventillator. This is the most aggressive approach to managing his BPD, but it would give him the best chance to develop as normally as possible over the next year. No guarantees, but the hope is that he would be off the ventilator and trachea tube in 18 to 24 months. At that point, we would have a healthy little boy. If we decide to go with the trachea tube and ventilator option, Tom would be in the hospital for another month. Needless to say, we got much more than we bargained for when we brought Tom down for a simple acid relux and feeding tube procedure. But, we find comfort in knowing that Riley Children's Hospital is the best place for us. Until we write, and you read, again, please remember - Never give up, don't ever give up!
So, as you may recall, Tom was on his own in the NICU at Memorial as of May 31 when we brought Joey home. The nurses and other staff were very generous with their love and attention for Tom - and we thank them for that. It made it easier to leave him "alone" knowing he would get plenty of lovin' from the folks there. During his solo weeks in the NICU, Tom faced a lot of challenges and toughed it out like the strongest of fighters.
The week Joe came home, Tom had gone back on CPAP - again. The treatment this time: diuretics, steroids & a VERY gradual weaning of his oxygen/air flow support. The diuretics help to get rid of excess fluid in his lungs - which is part of the process with chronic lung disease (or BPD: broncho pulmonary displasia). About a month before, we tried a very low dose, short course of steroids to help stimulate lung growth and development to fight his BPD, but didn't see any remarkable results. This time we increased the dose and the length of treatment - and were fortunate to see some decent results. We were able to very slowly take him from CPAP, to high flow cannula, to "off the wall" oxygen - similar to the system we have for him at home.
During that time, Vitale explained pulmonary hypertension to us, as this is a typical by-product of BPD. If Tom had pulmonary hypertension at the time, it seemed to be mild at most according to the echo of his heart. So they raised his oxygen saturation limits to keep his oxygenation higher. (Oxygen helps dilate blood vessels, which helps with the hypertension.) The docs didn't feel that Tom needed to go on any meds to treat it at this time. Though he did start medication to treat systemic hypertension (your run-of-the-mill high blood pressure).
In the midst of all this, Tom underwent a couple swallow studies. They confirmed that he has reflux and is indeed aspirating when swallowing - meaning, when he swallows, some of his food goes down his windpipe into his lungs. He unfortunately wasn't even coughing to get the milk out. Not a good thing for many reasons, but mostly because his lungs are already at a disadvantage with BPD. We did the study twice 3 weeks apart - and saw the same results both times. When he was finally discharged from the NICU last month, it was still too dangerous for him to take feedings by mouth, so he came home with the nasal gavage (NG) feeding tube as he had in the NICU.
A few days after Tom's second swallow study, we did what Vitale called a "milk study" to check for aspirating during reflux. Tom was given a feeding through his NG tube with some sort of radio active material added to the breast milk. Four hours later, they took a picture that captured all the traces of radioactive particles where the milk had gone in his body. That test did not confirm that he was aspirating when he refluxed and we were happy to hopefully rule out reflux as a contributor to his lung issues. In hindsight, our elation and relief were a bit premature.
Prior to discharge, we had lengthy discussions with Vitale and a handful of the NICU nurses regarding the option to have a couple surgical procedures done on Tom. First would be to put in a "G tube". This feeding tube provides a direct line to the stomach thru his belly, eliminating the need for the somewhat invasive NG tube down his throat. The second procedure would be a nissan - which uses the top of the stomach to sort of cinch-up the valve between the stomach and esophogus. These procedures would help with both reflux and swallowing - 2 issues Tom faces. Knowing he would most likely outgrow these issues, we opted to wait on the surgery for now. The stress of a surgical procedure and the risks involved outweighed the potential benefits...at the time.
After 112 days, we brought Tommy home from the NICU on Thursday, July 9. In addition to his NG tube, and nasal cannula with 3/4 liter of oxygen, he came home with a variety of medications. Needless to say, it was overwhelming to manage Tom and his needs on top of the requirements of his three brothers. The first few days were very stressful, but then we began to find our groove and it began to feel like our "new normal".
The night of July 21 and morning of July 22 Tom was having a rough time with coughing/choking spells at home. We took him to see the pediatrician. She made some changes to his medications and we seemed to see an improvement on the 23rd and 24th. On the 25th, his coughing got worse and the pediatrician decided to admit Tom to the pediatric unit at Memorial. Unfortunately, this cancelled Tim's trip to Indy with our neighbor Dave to the Brickyard NASCAR race. Instead we began a 5-day hospital stay with Tom. The level of care is certainly much different in Peds vs. the NICU. We agreed early on that one of us would stay by Tom's side for his entire stay. At the end of 5 days, Tom's oxygen requirements came down to where he was at home and his coughing fits seemed to be subsiding. There really wasn't much more the docs were prepared to do for him, so Tom was discharged and he continued to hold his own for a couple more days. On Thursday, July 30, Tom had his final appointment with the eye specialist and handled the exam like a champ. But when we got home, I noticed that he was very pale. I chalked it up to the stress of the eye exam and being late for his feeding. So we fed him and waited for his color to improve, but it didn't. I called the pediatrician and made arrangements to take him to the after hours clinic - luckily our doctor was on duty that night.
When we arrived at the clinic, Tom's oxygen saturation was very low - and even after 2 Albuterol breathing treatments it only got into the low 80s (it should be in the high 90s). That, in addition to his poor coloring, encouraged the doctor to admit him. This time we went to the Peds ICU (PICU). Upon admission, the nurses drew blood gases on Tom. His numbers were alarming enough to prompt a 2nd draw. His CO2 should have been in the 50s or even as high as the 60s but was at 128. They put him on 3 liters of high flow support at 100% oxygen. And he stayed at that level of support for a day or 2 before we were able to wean it down at all.
Call us naive - or just ignorant to the ins and outs of BPD - but we still believed that Tom would recover, get back to his 3/4 liter oxygen level and we'd take him home in a few days. Perhaps the doctors' words fell on our deaf (read: optimistic) ears. Or perhaps even they didn't catch on to just how serious Tom's condition was (and still is). We had discussions about BPD, pulmonary hypertension and other issues - but it still never settled in that our little guy was fighting much harder than we thought.
The PICU doctors raised the question again about the surgical procedures to address Tom's reflux problems. Taking reflux and risk of aspiration out of the mix could not only make Tom much more comfortable, but could give his lungs a better chance of "fixing themselves" faster and enable him to grow faster and healthier. By merely looking at the mechanics of it: Tom's NG tube was running thru his throat and down into his stomach. He's got issues with swallowing and keeping the valve between his esophogus and stomach closed. Taking the tube out of the mix would enable better swallowing and lessen reflux. So we agreed to do them both, but we knew the best place to get them done is at Riley Children's Hospital in Indianapolis. Tom's PICU doctor made a couple calls and on Wednesday, August 5 Tom was transported by ambulance from South Bend to Indy. Tim followed behind in our car and I came down the next day.
Tom was admitted to Riley's Infant Unit. On August 6 Tom got an upper GI in prep for his surgeries. Everything looked good, so he was slated for surgery on the 7th. Tim and I stayed in his hospital room the night before surgery and I was able to carry him in my arms to the surgical prep area before the procedure.
Surgery went well - though it took a bit longer than average. They were able to avoid a large incision and instead did the procedure lapriscopically (sp?). Given Tom's lung issues, it took a bit of extra effort on the surgeon's part, but he was able to successfuly perform both procedures without any complications. The complications came up AFTER surgery...
At first, Tom was resistant to waking up from the anesthesia. Then he was showing a marked resistance to weaning off the ventillator used for the procedure. A few hours later, they made room for us in the PICU and set Tom up for the night. We hoped to gradually wean him off the vent and get him back on high flow or regular nasal cannula by the following day...but no such luck. Tim and I were very frustrated, feeling that if these docs would only give our tough guy a chance, he could show them just how strong he is. We'd seen him bounce back so many times before - in the NICU and since discharge - and we honestly believed he could do it again.
Then Monday morning Dr. Ackerman came on duty in the NICU. She is on staff and is the woman in charge this week. She just happens to have 20+ years with kids that have severe BPD and pulmonary hypertension. Days later and with several tests to confirm and frank chats - we now know that's exactly what Tom has. Thanks to Dr. Ackerman's direct approach and years of experience to draw upon, we're now understanding just how tough our little fighter is.
Six days post-surgery, Tom's still on the ventillator. We've discovered that his CO2 has continued to be higher than the acceptable range. We're monitoring his CO2 levels via blood draws thru his PIC line every 4 hours and using that information to determine if we can wean him off the ventillator support gradually. We've introduced meds (the same ingredient in Viagra actually - it's a great blood vessel dilator) to address his hypertension and help with this exchange of CO2 for O2. The doc is hopeful but not optimistic that the meds alone will have much of an impact. We'll discuss it further with the doc tomorrow, but the best option for Tom may be a trachea tube and ventillator. This is the most aggressive approach to managing his BPD, but it would give him the best chance to develop as normally as possible over the next year. No guarantees, but the hope is that he would be off the ventilator and trachea tube in 18 to 24 months. At that point, we would have a healthy little boy. If we decide to go with the trachea tube and ventilator option, Tom would be in the hospital for another month. Needless to say, we got much more than we bargained for when we brought Tom down for a simple acid relux and feeding tube procedure. But, we find comfort in knowing that Riley Children's Hospital is the best place for us. Until we write, and you read, again, please remember - Never give up, don't ever give up!
Monday, August 10, 2009
Monday update....
Hello again....Jules here. Kristin, Tim & Tommy are still all down in Indianapolis. Tom is, unfortunately, still on the vent and they are working very hard to get him off. He had some test done today and also an echo. As far as the surgery, he is healing nicely. His discharge date is very unknown at this point. A schedule is being created right now for coverage with Henry, Joe and Sam back at their home. If anyone is able to offer some help, please contact Katie at: starrsindc@msn.com Please continue to keep the Coleman Family in your thoughts and prayers!! Thanks!
Saturday, August 8, 2009
Surgery update.....
Hello again....Jules here! Kristin sent me an e-mail this morning about Tommy and his surgery, here is what she had to say: The surgery went very well, the doctors were able to do it laproscopically (sp?). He is still on the vent though. His CO2 is pretty high, so they want to increase his O2 on the vent for awhile longer before trying to extubate him. Kristin stayed in the PICU with Tom last night and he'll be in there till after they extubate him and then he'll move to the infant unit. I will keep you posted as I get more information.........
Thursday, August 6, 2009
August update
Hello everyone! This is Tim & Kristin's friend, Julie Rees updating their blog. As you can imagine, they all have been very busy with the boys! Sam, Joe and Henry have all been doing very well at home since their discharge date and have been growing/eating/smiling like crazy! Unfortunately, Tom has been in/out of the hospital a couple times the last month. Most recently he was admitted on Thursday, July 30th. Since last Thursday the good news, Tom's oxygen support has gone back down where it was when he left the NICU. But, since Tommy still has other issues - reflux and aspirating when swallowing - Tim and Kristin have decided to have a couple procedures performed on Tommy. Last night, Wednesday August 5th, Tommy was transported to a hospital in Indianapolis to have the two procedures done. The doctor will install a G tube, a direct line to Tom's stomach. This will allow the feeding tube that goes up his nose and down into his throat to be removed - which will hopefully make swallowing easier. The other procedure they will perform is called a nissan. The doctors will "cinch up" the top of Tom's stomach to tighten the valve between his stomach and esophogus. This will hopefully resolve his reflux issues!! Tim will be staying in Indy with Tom until he can come home. Kristin drove down today (Thursday) and will stay a few days. Kristin and Tim have great help at home right now with the other 3 boys. Please keep all of them in your thoughts/prayers, I know they appreciate it so much. ~ Jules
Thursday, June 25, 2009
Photo Updates
As I'm sure you can imagine, life with three babies at home and one at the hospital has been crazy busy - but so rewarding and fun too. Here are a few shots and some quick updates from the last couple weeks.
Henry's first try at the bouncy seat. It didn't last too long, but he did like the looks of that giraffe.
Sammy in a silly hat made by Nana (my mom). The look on his face says it all, doesn't it? :)
Three peas on the activity mat. They had as much fun reaching for (and hitting) each other as they did playing with the toys.
Two of our most favorite helpers: Jen and her mom Lynne. We certainly couldn't have made it through the first couple weeks without their help! For reference: Jen is holding Sam, Lynne has Henry ("the champ") and I've got Joe.
Tim wanted to join the fun on activity mat. I'm not sure how much the boys enjoyed Dad invading their space, but Tim had a blast!
Henry really enjoys taking tubbies. Here he is enjoying his post-bath snuggle in his towel.
Here it is the Fabulous Feeder 2009 or "The Contraption" as I like to call it. (though there have been a number of different names under consideration...not all suitable for print...) Tim made this out of PVC and velcro - pretty clever, if you ask me. The goal: to shave time off our feedings - particularly the night time feedings. So far, we've had good success with it.
Well, I need to run. I'll post updates on each of the boys - particularly on Tom's progress - very soon. Take care!
Love,
Tim, Kristin & the boys
Henry's first try at the bouncy seat. It didn't last too long, but he did like the looks of that giraffe.
Sammy in a silly hat made by Nana (my mom). The look on his face says it all, doesn't it? :)
Three peas on the activity mat. They had as much fun reaching for (and hitting) each other as they did playing with the toys.
Two of our most favorite helpers: Jen and her mom Lynne. We certainly couldn't have made it through the first couple weeks without their help! For reference: Jen is holding Sam, Lynne has Henry ("the champ") and I've got Joe.
Tim wanted to join the fun on activity mat. I'm not sure how much the boys enjoyed Dad invading their space, but Tim had a blast!
Henry really enjoys taking tubbies. Here he is enjoying his post-bath snuggle in his towel.
Here it is the Fabulous Feeder 2009 or "The Contraption" as I like to call it. (though there have been a number of different names under consideration...not all suitable for print...) Tim made this out of PVC and velcro - pretty clever, if you ask me. The goal: to shave time off our feedings - particularly the night time feedings. So far, we've had good success with it.
Well, I need to run. I'll post updates on each of the boys - particularly on Tom's progress - very soon. Take care!
Love,
Tim, Kristin & the boys
Friday, June 12, 2009
Welcome home Joe!
As many of you know, we welcomed Joey home on Sunday, May 31. And although we are thrilled with his recovery and progress since his abscess, it was bittersweet to bring him home. In fact, I bawled at the NICU before we left with Joe - at the thought of leaving Tom "alone". I know he's in wonderful, caring hands with the staff at the NICU, but I hate that he's there now without his brothers.
Anyway, we've got three healthy boys at home now and we're so very thankful. It's been pretty crazy around here - as I'm sure you can imagine. Mom was here for Joe's first night home and Jen is still here in the trenches with us. I'm not sure how we're going to make it all work (especially the night time feedings) once Jen goes home!
Here are a few highlights from Joe's homecoming:
Joe in his car seat before leaving the NICU: "Wait! Isn't Tommy coming with us?"
Joe and his proud parents (with mom's tears wiped away). Valisa took this photo (since Henry wasn't with us this time). She was Joe's primary nurse and brought him into the NICU from delivery, so it was perfectly appropriate to have her there to wheel him out.
It seems to be Coleman boy tradition to fall asleep in the car seat on the way to or from the hospital. Don't you just want to eat this little peanut up?
Three peas in a pod. And just for the record: It's definitely Sam in the middle, but even their mother can't tell which one is Joe or Henry in this photo...
Lots more photos and a list of things we could use help with (thank you to those that have offered!) to come soon. Also, a big thanks to our neighbors and friends in the bunco group for their generosity in brining meals to us. We've been overwhelmed with all the love, help and support from our extended family here in Indiana. Thank you!!
Lots of love,
Tim, Kristin & the boys
Anyway, we've got three healthy boys at home now and we're so very thankful. It's been pretty crazy around here - as I'm sure you can imagine. Mom was here for Joe's first night home and Jen is still here in the trenches with us. I'm not sure how we're going to make it all work (especially the night time feedings) once Jen goes home!
Here are a few highlights from Joe's homecoming:
Joe in his car seat before leaving the NICU: "Wait! Isn't Tommy coming with us?"
Joe and his proud parents (with mom's tears wiped away). Valisa took this photo (since Henry wasn't with us this time). She was Joe's primary nurse and brought him into the NICU from delivery, so it was perfectly appropriate to have her there to wheel him out.
It seems to be Coleman boy tradition to fall asleep in the car seat on the way to or from the hospital. Don't you just want to eat this little peanut up?
Three peas in a pod. And just for the record: It's definitely Sam in the middle, but even their mother can't tell which one is Joe or Henry in this photo...
Lots more photos and a list of things we could use help with (thank you to those that have offered!) to come soon. Also, a big thanks to our neighbors and friends in the bunco group for their generosity in brining meals to us. We've been overwhelmed with all the love, help and support from our extended family here in Indiana. Thank you!!
Lots of love,
Tim, Kristin & the boys
Saturday, May 30, 2009
Welcome home Sam!!
Two down, two to go! Sam came home from the NICU on Wednesday, May 27. So far, he and his brother Henry have taken it easy on us and not caused too much trouble. :) We've been fortunate to have the generous help of my mom and best friend Jen (who arrived Thursday from Amsterdam) to get us through the feedings - and to keep us fed!
Here's a shot of Sam and his proud parents just before leaving the NICU. Henry was there with us that day and actually took this shot for us. :) He's very advanced.
Getting all those car seats in and out of the new minivan isn't as easy as one might think...
Sam snoozed on the way home - once he got settled into his car seat.
Our next exciting news is that Joe will be coming home tomorrow (Sunday)! We are thrilled to have three of our boys at home, but will certainly find it difficult to leave Tom at the NICU without the company of his brothers. The nurses, nurse practioners and doctors have assured me that Tom will get plenty of extra TLC in his brothers' absence. And I'm holding them to it!
More homecoming photos to come soon!
Lots of love,
Kristin, Tim and the boys
Here's a shot of Sam and his proud parents just before leaving the NICU. Henry was there with us that day and actually took this shot for us. :) He's very advanced.
Getting all those car seats in and out of the new minivan isn't as easy as one might think...
Sam snoozed on the way home - once he got settled into his car seat.
Our next exciting news is that Joe will be coming home tomorrow (Sunday)! We are thrilled to have three of our boys at home, but will certainly find it difficult to leave Tom at the NICU without the company of his brothers. The nurses, nurse practioners and doctors have assured me that Tom will get plenty of extra TLC in his brothers' absence. And I'm holding them to it!
More homecoming photos to come soon!
Lots of love,
Kristin, Tim and the boys
Monday, May 25, 2009
Welcome Home Henry!!
As many of you may have already heard, we brought Henry home from the hospital on Friday!! We're all adjusting pretty well, though it's still difficult for me to grasp the notion that we're now fully responsible for him! :) He seems happy and to be adjusting well - though I'm sure he misses his brothers. :) We go to see Dr. Rougeau (pediatrician) tomorrow for his baseline check-up. I honestly can't believe the "fun" is offically starting after 9 weeks. He's already made one trip back to see his brothers in the NICU - and will probably make a few more before any of his brothers make their journey home. The nurses have even set up a small crib for Henry to hang out in - right next to the big crib his 3 brothers are sharing. We're still working out the feedings (who's getting up at what time to feed him) and how Henry's schedule will adapt to work for all the boys once they come home. It was certainly helpful to have my mom here this weekend. Three adults to one baby is a great ratio. Too bad we can't maintain that... :) Here are a few photos of Henry's big weekend:
He slept through his car seat test.
How can Henry and Joey NOT be the identical twins?! (sorry Valisa!)
Henry and his proud parents upon their departure from the NICU. The nurses all said "goodbye and good luck". We said "thanks! we'll see you tomorrow!" :)
(Henry had a great first night home, but we couldn't keep him out of his dad's beer fridge. (I take no responsibility for this photo.)
Here's a quick recap on the other boys and a few photos too...
On Tuesday, Joe and Sam got their circumcisions. Both of them handled it like champs - though Sam was certainly more vocal about it - no surprise there. On Thursday, Joe, Sam and Henry got their 2-month vaccinations. I'm not sure if Tom has gotten his yet...I need to find out. That evening, all 4 had their bi-weekly eye exams. Their eyes are still "immature", but nearing maturity - and the good news is that there are no indications of any eye issues. The bad news is that they'll all need another eye exam in 2 weeks.
Joe came off oxygen this week - except during feedings - and has been doing very well. Just this morning, they removed his oxygen monitor and will not give him oxygen unless he demonstrates a need for it. He's been eating very well and gaining weight: he's finally joined the FIVE POUND club with his brothers! Here's a shot of Joe getting his bath on Thursday evening - after eye exams.
Tom came off CPAP on Thursday - yippee!! He started out on 7 liters of air flow in his cannula, but is now down to 5 liters. Tom has been getting albuterol treatments all week (just stopped them today) and they definitely seem to be helping. When at rest, he is breathing easier and not working quite so hard - which is a step in the right direction. He took his first bottle yesterday with Dad. We're allowed to bottle feed him once a day, as long as he seems up for it. He took 18 cc's, but we're thrilled to have him truly eating again. This is a sleepy Tom after his eye exam on Thursday - with his CPAP-free face!
The nurses have informed us that Sam is a bed hog! He manages to shimmy closer and closer to Joe - eventually crowding out him and Tom. :) Sam had been hanging on to his 25 cc trickle of oxygen for a while now and we've finally been able to take his oxygen off. Like Joe, they've also removed his oxygen monitor. We'll watch his heart rate and color cues to see if he needs oxygen support. When he and Joe make it 2 days without oxygen help, they'll be able to come home. So right now that could mean Wednesday...we'll keep you posted! (Mom - are you on stand-by for an emergency trip down here mid-week?) Sam, the most expressive of the group, let us know his feelings about being bothered after his eye exam on Thursday:
Just a couple more shots from Henry's first visit back to the NICU on Saturday. I took the first photo in the car on the way to the hospital - so sweet. And the second photo is of Henry's 3 brothers in their shared crib with their pacifiers.
Gotta run! We've got babies to feed in the NICU. I'll be posting another update soon with information/rules for visitors and some options for those of you that have offered to help us out. Stay tuned!
Lots of love and hugs,
Kristin, Tim and the boys
He slept through his car seat test.
How can Henry and Joey NOT be the identical twins?! (sorry Valisa!)
Henry and his proud parents upon their departure from the NICU. The nurses all said "goodbye and good luck". We said "thanks! we'll see you tomorrow!" :)
(Henry had a great first night home, but we couldn't keep him out of his dad's beer fridge. (I take no responsibility for this photo.)
Here's a quick recap on the other boys and a few photos too...
On Tuesday, Joe and Sam got their circumcisions. Both of them handled it like champs - though Sam was certainly more vocal about it - no surprise there. On Thursday, Joe, Sam and Henry got their 2-month vaccinations. I'm not sure if Tom has gotten his yet...I need to find out. That evening, all 4 had their bi-weekly eye exams. Their eyes are still "immature", but nearing maturity - and the good news is that there are no indications of any eye issues. The bad news is that they'll all need another eye exam in 2 weeks.
Joe came off oxygen this week - except during feedings - and has been doing very well. Just this morning, they removed his oxygen monitor and will not give him oxygen unless he demonstrates a need for it. He's been eating very well and gaining weight: he's finally joined the FIVE POUND club with his brothers! Here's a shot of Joe getting his bath on Thursday evening - after eye exams.
Tom came off CPAP on Thursday - yippee!! He started out on 7 liters of air flow in his cannula, but is now down to 5 liters. Tom has been getting albuterol treatments all week (just stopped them today) and they definitely seem to be helping. When at rest, he is breathing easier and not working quite so hard - which is a step in the right direction. He took his first bottle yesterday with Dad. We're allowed to bottle feed him once a day, as long as he seems up for it. He took 18 cc's, but we're thrilled to have him truly eating again. This is a sleepy Tom after his eye exam on Thursday - with his CPAP-free face!
The nurses have informed us that Sam is a bed hog! He manages to shimmy closer and closer to Joe - eventually crowding out him and Tom. :) Sam had been hanging on to his 25 cc trickle of oxygen for a while now and we've finally been able to take his oxygen off. Like Joe, they've also removed his oxygen monitor. We'll watch his heart rate and color cues to see if he needs oxygen support. When he and Joe make it 2 days without oxygen help, they'll be able to come home. So right now that could mean Wednesday...we'll keep you posted! (Mom - are you on stand-by for an emergency trip down here mid-week?) Sam, the most expressive of the group, let us know his feelings about being bothered after his eye exam on Thursday:
Just a couple more shots from Henry's first visit back to the NICU on Saturday. I took the first photo in the car on the way to the hospital - so sweet. And the second photo is of Henry's 3 brothers in their shared crib with their pacifiers.
Gotta run! We've got babies to feed in the NICU. I'll be posting another update soon with information/rules for visitors and some options for those of you that have offered to help us out. Stay tuned!
Lots of love and hugs,
Kristin, Tim and the boys
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