We knew it would happen at some point. We knew we were lucky that it hadn't happened yet. We hoped it would happen, but secretely reveled in the fact that it hadn't. Well, it did. Mason is mobile. It's not yet crawling or creeping, or even scooting, but somehow, he can make it from one end of the room to the other - he just rolls over and over. He is rolling onto his stomach on his own and even making some motions toward crawling. Maybe the idea of getting PT weekly scared him into thinking he had to get his rear in gear. Regardless, Bill and I have decided that we'll probably need to baby-proof the house sometime in the next couple of weeks. Well, it was good while it lasted....
Monday, April 27, 2009
Saturday, April 25, 2009
Thank You!
For all who supported the March of Dimes through Nancy, one of our NICU nurses, or our friends Erin and Evey,
Tuesday, April 21, 2009
Shameless Plug for the March of Dimes
I'm not afraid to admit it; in fact, I'm proud to be standing for something that meant so much in our lives......Here it is - a shameless plug for the March of Dimes Walk on April 25th (this Saturday!).
If you have the resources, and are so inclined, please consider donating to the March of Dimes. We even have a link just to the right, here. ------------------------------------------------------------> Without the March of Dimes, I wouldn't have a son turning 13 months old today. Please support Nancy, one of our NICU nurses, as she raises money for the March of Dimes.
The 2 treatments that saved his life (surfactant and nitric oxide) were made possible by money from the March of Dimes.
We all have something called surfactant lining the air sacs in our lungs. Without it, those air sacs wouldn't stay inflated. When Mason was born, he didn't have that. His lungs hadn't had a chance to develop that, so he couldn't breathe on his own. Without the surfactant, the ventilator wouldn't have kept him alive. THANK YOU, MARCH OF DIMES FOR SURFACTANT! Mason also had a hole in his heart that was causing some increased pressure on the right side of his heart as well as some tightening of the blood vessels that take the blood to the lungs. Because of both of these, he wasn't getting rid of the carbon dioxide in his lungs. Without the nitric oxide treatments (not to be confused with laughing gas - nitrous oxide), he would not have survived that first night. THANK YOU, MARCH OF DIMES FOR NITRIC OXIDE!
We owe our son's life to so many people, guardian angels, and to the March of Dimes. Please, help them continue to develop ways to prevent prematurity and treatments to save the lives of other premature babies. Please click on the link to the right ---------------> if you can donate!
If you have the resources, and are so inclined, please consider donating to the March of Dimes. We even have a link just to the right, here. ------------------------------------------------------------> Without the March of Dimes, I wouldn't have a son turning 13 months old today. Please support Nancy, one of our NICU nurses, as she raises money for the March of Dimes.
The 2 treatments that saved his life (surfactant and nitric oxide) were made possible by money from the March of Dimes.
We all have something called surfactant lining the air sacs in our lungs. Without it, those air sacs wouldn't stay inflated. When Mason was born, he didn't have that. His lungs hadn't had a chance to develop that, so he couldn't breathe on his own. Without the surfactant, the ventilator wouldn't have kept him alive. THANK YOU, MARCH OF DIMES FOR SURFACTANT! Mason also had a hole in his heart that was causing some increased pressure on the right side of his heart as well as some tightening of the blood vessels that take the blood to the lungs. Because of both of these, he wasn't getting rid of the carbon dioxide in his lungs. Without the nitric oxide treatments (not to be confused with laughing gas - nitrous oxide), he would not have survived that first night. THANK YOU, MARCH OF DIMES FOR NITRIC OXIDE!
We owe our son's life to so many people, guardian angels, and to the March of Dimes. Please, help them continue to develop ways to prevent prematurity and treatments to save the lives of other premature babies. Please click on the link to the right ---------------> if you can donate!
Friday, April 17, 2009
Mommy's a Nitwit!
So, teething is a challenge don't get me wrong, but I was reminded today that it's important to look at the whole picture. We ended up taking Mason to the doctor today because we wanted to make sure nothing else was going on. Sure enough, there was. He probably has some fluid on his lungs again, making it hard to breathe. He had outgrown his diuretic dose by quite a bit, so of course he's having a hard time breathing. Duh, Mommy!
Thankfully, we have a fantastic medical team working with us who realize that we usually have a good handle on knowing what Mason needs. The nurse who talked to Bill today didn't question him when he asked for lab work - she just asked "which ones." We were able to come in and get the lab work before seeing the doctor so he had the results. Thankfully, our wonderful pediatrician did some math before we even showed up and had new doses of the diuretic medication ready for us. Thankfully, Daddy and the doctor can look at the big picture, can pull Mommy out of her stupor, and help her realize that it's not all about teething!
With the increased dose of diuretics, hopefully things will settle out fairly quickly and Mason can go back to breathing more easily and those teeth will break through soon enough so that we can go back to "normal" and continue weaning off of the steroids!
Thankfully, we have a fantastic medical team working with us who realize that we usually have a good handle on knowing what Mason needs. The nurse who talked to Bill today didn't question him when he asked for lab work - she just asked "which ones." We were able to come in and get the lab work before seeing the doctor so he had the results. Thankfully, our wonderful pediatrician did some math before we even showed up and had new doses of the diuretic medication ready for us. Thankfully, Daddy and the doctor can look at the big picture, can pull Mommy out of her stupor, and help her realize that it's not all about teething!
With the increased dose of diuretics, hopefully things will settle out fairly quickly and Mason can go back to breathing more easily and those teeth will break through soon enough so that we can go back to "normal" and continue weaning off of the steroids!
Thursday, April 16, 2009
3 Words - I Hate Teething!
As many who have read this blog can attest, I try to stay positive. I try to focus on the things that are going well. I try not to use the blog to rant. I try not to dwell on the challenges. But for now, I'm gonna to do just that.
I Hate Teething!
From what I understand, in a child with "normal" development and health, teething can be a challenge. It can cause fevers, congestion, and all kinds of other things. For a kid like Mason, it's all that and more. I'm now not so sure that the last hospitalization was really about Mason being too fat and outgrowing his lungs because history seems to be repeating itself.
For the last week or so, we've had a steady regimen of tylenol, ibuprofen, teething toys, frozen washcloths, teething gel, and whatever else we can think of. Despite all of this, Mason's been in pain and has been waking some at night again. His oxygen need has been up slightly, but that's at least in part due to decreasing the steroids.
Then, we crossed a threshold last night. He woke again around midnight, then 1:30 am, then a good stretch of sleep until 5 am. Bill was kind enough to get up so I could get my last hour of sleep (or so I thought). Mason's oxygen level went down, so Bill tried suctioning his nose, he tried giving him his nebulizer (breathing treatment), and finally, he tried turning up his oxygen (from 3L to 5L). Despite all of that, Mason's oxygen level just wouldn't come up because he was upset and not breathing well. So much for that extra hour of sleep that I was looking for.
After I got up, we were able to get Mason calmed down a bit, enough that his breathing settled out more, and were able to turn down the oxygen again. The trouble continued though, as I was trying to get ready for work, Mason had another idea. Because his teeth were so painful, he wanted to be held. This would work fine if I could move around the house with him, but he still needed to be hooked up to the feeding tube (from 9 at night to 9 in the am), so we're tethered (not to mention the tethering to the oxygen monitor and the oxygen tank). Every time I put him down, he would start grunting, squealing (and not in a good way), or crying and his oxygen level would drop. Doesn't make for an easy time to get ready for work. We continued this pattern for a total of 3 hours - good thing I don't have an official start time for work! Finally, we were able to distract him enough that he could breathe calmly and I reluctantly left for work.
Did I mention I hate teething?
I Hate Teething!
From what I understand, in a child with "normal" development and health, teething can be a challenge. It can cause fevers, congestion, and all kinds of other things. For a kid like Mason, it's all that and more. I'm now not so sure that the last hospitalization was really about Mason being too fat and outgrowing his lungs because history seems to be repeating itself.
For the last week or so, we've had a steady regimen of tylenol, ibuprofen, teething toys, frozen washcloths, teething gel, and whatever else we can think of. Despite all of this, Mason's been in pain and has been waking some at night again. His oxygen need has been up slightly, but that's at least in part due to decreasing the steroids.
Then, we crossed a threshold last night. He woke again around midnight, then 1:30 am, then a good stretch of sleep until 5 am. Bill was kind enough to get up so I could get my last hour of sleep (or so I thought). Mason's oxygen level went down, so Bill tried suctioning his nose, he tried giving him his nebulizer (breathing treatment), and finally, he tried turning up his oxygen (from 3L to 5L). Despite all of that, Mason's oxygen level just wouldn't come up because he was upset and not breathing well. So much for that extra hour of sleep that I was looking for.
After I got up, we were able to get Mason calmed down a bit, enough that his breathing settled out more, and were able to turn down the oxygen again. The trouble continued though, as I was trying to get ready for work, Mason had another idea. Because his teeth were so painful, he wanted to be held. This would work fine if I could move around the house with him, but he still needed to be hooked up to the feeding tube (from 9 at night to 9 in the am), so we're tethered (not to mention the tethering to the oxygen monitor and the oxygen tank). Every time I put him down, he would start grunting, squealing (and not in a good way), or crying and his oxygen level would drop. Doesn't make for an easy time to get ready for work. We continued this pattern for a total of 3 hours - good thing I don't have an official start time for work! Finally, we were able to distract him enough that he could breathe calmly and I reluctantly left for work.
Did I mention I hate teething?
Friday, April 10, 2009
I Got Nothing
It's amazing, but its been nearly 2 weeks since the last post and I got nothing (well, I guess I can write about nothing, too). We've been hanging in there, riding out the teething wave, coasting on a little more oxygen because of the pain, and trying to wean a little more with the steroids. Mason's now getting the steroids just once a day and seems to be doing ok with it. Last week when we changed from 2x/day to 1x/day, we did see a jump in his oxygen need (more than we like, but not so much that we're worried), so we decided to hold steady for a little longer than planned.
Well, I guess we did have one big thing over the last couple of weeks - Mason qualified for Early Intervention. This is a program through the county that is related to the Special Education programs once kids get to school. It allows for a physical therapist to come into our house weekly to work with Mason on his developmental milestones (crawling, standing, walking) as well as his speech (he's still not babbling like he should at this age). The best news is that his cognition (thinking) and social skills were just about normal for his age - not his adjusted age of 10 months, but his real age of 12 months. We are so encouraged by this news because it means his physical delays are really related to his lungs, not his brain! He's thinking almost like a 12 month old even if he can't move like one!
We've got a very fun Easter weekend planned with lots of family events. I realize that Easter moves around from year to year, but as I was driving into work yesterday, I started thinking again about Holy Thursday and Good Friday last year - the night I went into labor and the day Mason was born. We spent his first Easter in the NICU with Mason on the ventilator and not knowing if he'd make it to the next week, much less next year's Easter. We were finally getting used to the idea of the machines and took a video of him with all of his equipment to share with the rest of the family who was celebrating Easter together. Now, this year, Mason is doing "well" and will get to dig into his Easter basket on his own. We have been so blessed!
We hope you all have a wonderful Easter with friends and family!
Well, I guess we did have one big thing over the last couple of weeks - Mason qualified for Early Intervention. This is a program through the county that is related to the Special Education programs once kids get to school. It allows for a physical therapist to come into our house weekly to work with Mason on his developmental milestones (crawling, standing, walking) as well as his speech (he's still not babbling like he should at this age). The best news is that his cognition (thinking) and social skills were just about normal for his age - not his adjusted age of 10 months, but his real age of 12 months. We are so encouraged by this news because it means his physical delays are really related to his lungs, not his brain! He's thinking almost like a 12 month old even if he can't move like one!
We've got a very fun Easter weekend planned with lots of family events. I realize that Easter moves around from year to year, but as I was driving into work yesterday, I started thinking again about Holy Thursday and Good Friday last year - the night I went into labor and the day Mason was born. We spent his first Easter in the NICU with Mason on the ventilator and not knowing if he'd make it to the next week, much less next year's Easter. We were finally getting used to the idea of the machines and took a video of him with all of his equipment to share with the rest of the family who was celebrating Easter together. Now, this year, Mason is doing "well" and will get to dig into his Easter basket on his own. We have been so blessed!
We hope you all have a wonderful Easter with friends and family!
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