Sorry this first Picture is so graphic. It's a picture of ME! I was "stalking" someone
elses blog-and honestly, I can't remember where or how I got there. But the Mommy who was blogging has a little 1 year old boy, who has had heart problems. She has had to travel the same road I traveled when Mason was a baby. She was so thrilled about her little boy not being on oxygen during the day. She was so happy because she had a new found freedom-not carrying an oxygen tank around with her for her son all the time. I have always been grateful that Mason never had any heart problems. For those of you who don't know (but if you are a really good friend of mine, you do know). Mason was born without a
Diaphragm. His condition is called Congenital Diaphragmatic Hernia. He had a long, hard road to recovery. The first picture, is me holding Mason for the first time, when he was about 1 month old. He had a really tough day this day, and then got better in the late afternoon and I was able to hold him in the evening.
This was soon after Mason came home from the Hospital. This "scene" of Mason sleeping on Lee's chest was a common
occurrence in the evening, for both of them. For a while, this was one of the only ways Mason could get to sleep. Lee hated it when I woke him up, but I managed to get Mason upstairs without waking him. Mason came home with a feeding tube in his stomach (because he couldn't suck or eat with out gagging) and oxygen because he couldn't maintain his oxygen
saturation's. He ended up with 1 1/2 lung capacity and slight heart damage from his stomach being pressed against his heart in
utero. The heart damage healed itself in time, and Mason was on oxygen 24-7 until he was 11 months old, and then only when he slept for
naptime and at night until he was 2 1/2. He was really, really good about keeping it in his nose-I never had to fight him on it.
Mac was 6 years old when Mason was born and came home. He was the
BESTEST Big Brother, who coped with his baby brother and his medical equipment. Mac was always careful, he made sure the oxygen tube was still up Mason's nose (and would put it back in if it wasn't), he let me know when Mason's machine was beeping-and a bunch of other stuff. Mac became an expert at washing his hands. On this morning, I had to take a shower (the nerve of me huh?) and I told Mac to just keep on eye on his brother. When I came downstairs, 10 quick minutes later (I learned to be fast)-this is what I found. Mac had managed to move the swing (Mason was in the swing before I took a shower) without kinking the oxygen tubing and without tipping his feeding machine over, causing it to beep. Mac told me that Mason wanted to watch cartoons with him, so he moved him.
This is Lee's favorite Pic of Mason. He was the happiest baby! He smiled like his ALL the time. He loved his swing! Yes, his little outfit coordinated with the color of the swing, no, I didn't plan it this way. The swing was one of the easier purchases of baby equipment I made. When I bought his stroller, I left him at home with Lee. I went to Babies R Us-because they had the largest selection. I had his small oxygen tank with me. I had to make sure that the little basket underneath the stroller could hold the oxygen tank without unsnapping or "breaking" through. It took me almost 1 hour to do this. The sales guy thought I was a little nuts. I was happy with the stroller we got and had it for a long time. Lee also got me a big "hook" to clip Mason's feeding machine onto the stroller. Just something he picked up at Home Depot and thought it would work, and it did. And when I went to
Childrens for Check
up's, all the other Mom's wanted to know where I got it, because they wanted one for
their child's feeding machines too.
This is Mason with his little black backpack on. His feeding machine was inside the backpack. When I had to go to the grocery store, I had Mason in a Baby Bjorn, I had the small oxygen tank-also in a bag/holder with a strap on one shoulder and his feeding machine backpack on my other shoulder. I had the feeding tube and oxygen tube draped in front of me, and it looked like I was going to trip, but they weren't low enough for that to happen. I sanitized the handle bars of the shopping cart with a Clorox Anti bacterial wipe before I even touched the cart. I did this before Grocery Stores offered Antibacterial wipes to wipe the cart down. I like to think of myself as a "Shopping Cart Wiper" pioneer. I always had a small
ziplock baggie full of them in my coat pocket. Simple tasks like going to the grocery store wasn't easy, but had to be done. It would take me 15 minutes to get Mason out the door. I had to: get his jacket and shoes on, make sure his feeding machine bag was full, hook him up to his portable oxygen tank, get him out to the car, put him in his
carseat, and then go. I think I did this in 10 minutes once. One thing that was strange to me, picking up a normal baby without tubes and stuff at the time Mason was a baby. I had a friend who had a baby when Mason was 4 months old. So, if we were together and I picked up her baby without tubes, it was strange to me. I remember carrying Mason at
Childrens for a
procedure before he was discharged, he didn't have his feeding machine on-because he was going to be put under, but he had his oxygen on. A volunteer at the Hospital came with us and strolled his oxygen tank for us. I was in the elevator and I realized, I was holding Mason without having anything else on me-it was nice to just hold my little baby without all the other stuff on me.
Mason was 2 years old for this pic. It was Christmas morning, and no one wanted to wait for me to "disconnect" him from his machine. He has to have his feeding machine on and running all night long. When Mason woke up in the mornings, and if I didn't come as soon as he was awake, he would kink his white tubing and make the machine beep. The machine would beep if there was a kink in the tubing, if there was an little air bubble in the tube, when it was empty, or just because it felt I needed to wake up at 3:00am for no apparent reason. It rarely beeped when there wasn't something wrong with it. But there were times when I was sleeping and thought I heard it beeping, and then run in the bedroom, and found it not beeping at all-just my imagination or something in my dreams.
Now he is a fairly healthy boy. He still gets sick pretty easily. Looking at him, you wouldn't know how sickly his was. He has a check up with his Surgeon at
Childrens this week. I guess that is why I'm thinking of his past. And, that I read that other Mom's blog. I remember when I didn't have to take an oxygen tank with me. It seemed strange at first, but I still had it in the car, just in case. But it did make outings easier. And I did feel a sense of freedom too. I'm excited about seeing Mason's surgeon, we haven't seen him in a few years, but this will be the first time Mason will get to talk with and interact with him. I'll post Mason's Check up later this week.
Sorry this first Picture is so graphic. It's a picture of ME! I was "stalking" someone elses blog-and honestly, I can't remember where or how I got there. But the Mommy who was blogging has a little 1 year old boy, who has had heart problems. She has had to travel the same road I traveled when Mason was a baby. She was so thrilled about her little boy not being on oxygen during the day. She was so happy because she had a new found freedom-not carrying an oxygen tank around with her for her son all the time. I have always been grateful that Mason never had any heart problems. For those of you who don't know (but if you are a really good friend of mine, you do know). Mason was born without a Diaphragm. His condition is called Congenital Diaphragmatic Hernia. He had a long, hard road to recovery. The first picture, is me holding Mason for the first time, when he was about 1 month old. He had a really tough day this day, and then got better in the late afternoon and I was able to hold him in the evening.
This was soon after Mason came home from the Hospital. This "scene" of Mason sleeping on Lee's chest was a common occurrence in the evening, for both of them. For a while, this was one of the only ways Mason could get to sleep. Lee hated it when I woke him up, but I managed to get Mason upstairs without waking him. Mason came home with a feeding tube in his stomach (because he couldn't suck or eat with out gagging) and oxygen because he couldn't maintain his oxygen saturation's. He ended up with 1 1/2 lung capacity and slight heart damage from his stomach being pressed against his heart in utero. The heart damage healed itself in time, and Mason was on oxygen 24-7 until he was 11 months old, and then only when he slept for naptime and at night until he was 2 1/2. He was really, really good about keeping it in his nose-I never had to fight him on it.
Mac was 6 years old when Mason was born and came home. He was the BESTEST Big Brother, who coped with his baby brother and his medical equipment. Mac was always careful, he made sure the oxygen tube was still up Mason's nose (and would put it back in if it wasn't), he let me know when Mason's machine was beeping-and a bunch of other stuff. Mac became an expert at washing his hands. On this morning, I had to take a shower (the nerve of me huh?) and I told Mac to just keep on eye on his brother. When I came downstairs, 10 quick minutes later (I learned to be fast)-this is what I found. Mac had managed to move the swing (Mason was in the swing before I took a shower) without kinking the oxygen tubing and without tipping his feeding machine over, causing it to beep. Mac told me that Mason wanted to watch cartoons with him, so he moved him.
This is Lee's favorite Pic of Mason. He was the happiest baby! He smiled like his ALL the time. He loved his swing! Yes, his little outfit coordinated with the color of the swing, no, I didn't plan it this way. The swing was one of the easier purchases of baby equipment I made. When I bought his stroller, I left him at home with Lee. I went to Babies R Us-because they had the largest selection. I had his small oxygen tank with me. I had to make sure that the little basket underneath the stroller could hold the oxygen tank without unsnapping or "breaking" through. It took me almost 1 hour to do this. The sales guy thought I was a little nuts. I was happy with the stroller we got and had it for a long time. Lee also got me a big "hook" to clip Mason's feeding machine onto the stroller. Just something he picked up at Home Depot and thought it would work, and it did. And when I went to Childrens for Check up's, all the other Mom's wanted to know where I got it, because they wanted one for their child's feeding machines too.
This is Mason with his little black backpack on. His feeding machine was inside the backpack. When I had to go to the grocery store, I had Mason in a Baby Bjorn, I had the small oxygen tank-also in a bag/holder with a strap on one shoulder and his feeding machine backpack on my other shoulder. I had the feeding tube and oxygen tube draped in front of me, and it looked like I was going to trip, but they weren't low enough for that to happen. I sanitized the handle bars of the shopping cart with a Clorox Anti bacterial wipe before I even touched the cart. I did this before Grocery Stores offered Antibacterial wipes to wipe the cart down. I like to think of myself as a "Shopping Cart Wiper" pioneer. I always had a small ziplock baggie full of them in my coat pocket. Simple tasks like going to the grocery store wasn't easy, but had to be done. It would take me 15 minutes to get Mason out the door. I had to: get his jacket and shoes on, make sure his feeding machine bag was full, hook him up to his portable oxygen tank, get him out to the car, put him in his carseat, and then go. I think I did this in 10 minutes once. One thing that was strange to me, picking up a normal baby without tubes and stuff at the time Mason was a baby. I had a friend who had a baby when Mason was 4 months old. So, if we were together and I picked up her baby without tubes, it was strange to me. I remember carrying Mason at Childrens for a procedure before he was discharged, he didn't have his feeding machine on-because he was going to be put under, but he had his oxygen on. A volunteer at the Hospital came with us and strolled his oxygen tank for us. I was in the elevator and I realized, I was holding Mason without having anything else on me-it was nice to just hold my little baby without all the other stuff on me.
Mason was 2 years old for this pic. It was Christmas morning, and no one wanted to wait for me to "disconnect" him from his machine. He has to have his feeding machine on and running all night long. When Mason woke up in the mornings, and if I didn't come as soon as he was awake, he would kink his white tubing and make the machine beep. The machine would beep if there was a kink in the tubing, if there was an little air bubble in the tube, when it was empty, or just because it felt I needed to wake up at 3:00am for no apparent reason. It rarely beeped when there wasn't something wrong with it. But there were times when I was sleeping and thought I heard it beeping, and then run in the bedroom, and found it not beeping at all-just my imagination or something in my dreams.
Now he is a fairly healthy boy. He still gets sick pretty easily. Looking at him, you wouldn't know how sickly his was. He has a check up with his Surgeon at Childrens this week. I guess that is why I'm thinking of his past. And, that I read that other Mom's blog. I remember when I didn't have to take an oxygen tank with me. It seemed strange at first, but I still had it in the car, just in case. But it did make outings easier. And I did feel a sense of freedom too. I'm excited about seeing Mason's surgeon, we haven't seen him in a few years, but this will be the first time Mason will get to talk with and interact with him. I'll post Mason's Check up later this week. 
2 comments:
Wow, being so far away, I didn't see everything that went on with Mason. Thanks for sharing!
Even though I knew all this stuff, I loved reading this post and seeing the pictures! You are an amazing woman, Hope! And Mason is one incredible kid.
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