Just a couple of recent photos to share, hopefully an update soon!
Wednesday, October 22, 2008
Friday, October 17, 2008
He Passed!!
Noah passed his swallow study!! HOORAYYYYYYY!!!
On Tuesday, I took Noah down to Maine Med to have his third modified barium swallow test (the first two were while he was still in the NICU). The swallow test was meant to check to see if he would still aspirate during oral feeds. I can not tell you how nervous I was; I just wanted so badly for him to pass so that he could finally know how freaking amazing eating is. (Seriously, eating is third on my list of favorite things to do, only behind cuddling with my family and sleeping.) And obviously, it would just make life so much easier for all of us. No more hauling around his feeding pump and pole, no more button in his belly, no more worrying about infection, etc. So after a little while in the waiting area, we were called in. They put a big led apron on me, and got Noah set up in front of the cameras that would take x-ray video of him (a little scary - how is it that if I need a big led apron to be in the room with him, that he can be plopped right in front of the x-ray machine with just his lap covered? But it had to be done, so what can you do?). I will say, it is very cool to watch x-ray video, and if it weren't for all that radiation, it would be fun to do at a party :o)
Anyway, I was prepared to make sure that Noah had the best possible chance for success. As soon as we were in there, I told the speech therapist who works with Noah that I wanted to start with a slow-flow nipple and thickened liquid, so that he could start out with the easiest settings. After all, we would certainly do the same thing at home with him, if that was the only way he could do it at first. Unfortunately, she explained that they couldn't start with thickened liquid because of the way the barium coats the throat - apparently it would make it difficult to see what was going on when they later tried unthickened liquid. And naturally, all she had with her was a regular flow bottle. But I came prepared, and whipped out the Dr. Brown's slow flow bottle I had brought from home, just in case that happened, and she agreed to use it. So I didn't get my way on the thickened liquid, but I did with the bottle, and I think that was probably more important anyway.
So when it was time to start, they gave me the bottle to try with him, and he just kept gagging over and over. I was so panicked that he was choking on the liquid, and I kept taking the bottle away every time he gagged, but they could see clearly on the video that he wasn't even getting any liquid yet, so he wasn't choking. I think because the liquid was cold, the nipple was too, and he didn't like the feel of it in his mouth, and that was causing the choking. At that point I was really nerved up, and I didn't want to make it stressful for him, so I let the technician that was there take over, while I watched with the speech therapist and the nurse practitioner. Wouldn't you know it, as soon as she took over, he took off!! He did fantastic, and it was so amazing to watching the barium flow down his esophagus, never once leaking into his windpipe. I was so nervous the whole time, wringing my hands and dancing from foot to foot. I didn't need to worry though, because he did it perfectly, and we were given the o.k. to start trying a bottle with him once or twice a day with just 10-20 cc's, to get him used to it. On the 21st, I'll be taking him to the feeding clinic where we will work one on one with speech, p.t., and o.t. to come up with a timeline and goals for him. So exciting!
The next day, Darren and I took him to the pediatrician's. He needed two more vaccines plus the first round of his flu shot. The nurse went really fast, but he still cried and was so upset. But as soon as the nurse finished and I picked him up to rock him, he calmed right down. Sweet little guy :o) And on a brighter note, he weighed 12 lbs 12 oz and was 24 inches long! The doctor was very pleased and said that we were doing a great job with him, and that he was catching up very quickly. So far he is right on target with his developmental milestones too, when you take into account his adjusted age! When he had the button put in and we were finally able to start doing tummy time again, you could tell that he had really regressed with his neck strength and head control, and I was sooo upset. But we have been working on it everyday, and he is back up to where he was when we left the NICU. It's so exciting to see how much he changes, grows, and improves everyday!
On Tuesday, I took Noah down to Maine Med to have his third modified barium swallow test (the first two were while he was still in the NICU). The swallow test was meant to check to see if he would still aspirate during oral feeds. I can not tell you how nervous I was; I just wanted so badly for him to pass so that he could finally know how freaking amazing eating is. (Seriously, eating is third on my list of favorite things to do, only behind cuddling with my family and sleeping.) And obviously, it would just make life so much easier for all of us. No more hauling around his feeding pump and pole, no more button in his belly, no more worrying about infection, etc. So after a little while in the waiting area, we were called in. They put a big led apron on me, and got Noah set up in front of the cameras that would take x-ray video of him (a little scary - how is it that if I need a big led apron to be in the room with him, that he can be plopped right in front of the x-ray machine with just his lap covered? But it had to be done, so what can you do?). I will say, it is very cool to watch x-ray video, and if it weren't for all that radiation, it would be fun to do at a party :o)
Anyway, I was prepared to make sure that Noah had the best possible chance for success. As soon as we were in there, I told the speech therapist who works with Noah that I wanted to start with a slow-flow nipple and thickened liquid, so that he could start out with the easiest settings. After all, we would certainly do the same thing at home with him, if that was the only way he could do it at first. Unfortunately, she explained that they couldn't start with thickened liquid because of the way the barium coats the throat - apparently it would make it difficult to see what was going on when they later tried unthickened liquid. And naturally, all she had with her was a regular flow bottle. But I came prepared, and whipped out the Dr. Brown's slow flow bottle I had brought from home, just in case that happened, and she agreed to use it. So I didn't get my way on the thickened liquid, but I did with the bottle, and I think that was probably more important anyway.
So when it was time to start, they gave me the bottle to try with him, and he just kept gagging over and over. I was so panicked that he was choking on the liquid, and I kept taking the bottle away every time he gagged, but they could see clearly on the video that he wasn't even getting any liquid yet, so he wasn't choking. I think because the liquid was cold, the nipple was too, and he didn't like the feel of it in his mouth, and that was causing the choking. At that point I was really nerved up, and I didn't want to make it stressful for him, so I let the technician that was there take over, while I watched with the speech therapist and the nurse practitioner. Wouldn't you know it, as soon as she took over, he took off!! He did fantastic, and it was so amazing to watching the barium flow down his esophagus, never once leaking into his windpipe. I was so nervous the whole time, wringing my hands and dancing from foot to foot. I didn't need to worry though, because he did it perfectly, and we were given the o.k. to start trying a bottle with him once or twice a day with just 10-20 cc's, to get him used to it. On the 21st, I'll be taking him to the feeding clinic where we will work one on one with speech, p.t., and o.t. to come up with a timeline and goals for him. So exciting!
The next day, Darren and I took him to the pediatrician's. He needed two more vaccines plus the first round of his flu shot. The nurse went really fast, but he still cried and was so upset. But as soon as the nurse finished and I picked him up to rock him, he calmed right down. Sweet little guy :o) And on a brighter note, he weighed 12 lbs 12 oz and was 24 inches long! The doctor was very pleased and said that we were doing a great job with him, and that he was catching up very quickly. So far he is right on target with his developmental milestones too, when you take into account his adjusted age! When he had the button put in and we were finally able to start doing tummy time again, you could tell that he had really regressed with his neck strength and head control, and I was sooo upset. But we have been working on it everyday, and he is back up to where he was when we left the NICU. It's so exciting to see how much he changes, grows, and improves everyday!
Monday, October 6, 2008
Pics
Please bare with me while I post these pictures without any idea as to what I am doing. I still have't really explored blogspot's features, so I am just going to use the easy button, which I think will just post my pictures in a big long line. Good thing he is so cute, because otherwise it wouldn't be very visually appealing!
Finally
So I really have no excuses for not posting after all of this time, other than I just kept telling myself, I'll do it tomorrow. There sure are a lot of tomorrows, huh? :o)
Anyways, Noah is thriving being at home. He and I have made a little routine for ourselves, and I think I can safely say that we are both enjoying ourselves. Don't get me wrong, there are days when I get a little stir crazy - we can't take Noah into the public because of his weakened lungs, which means we are confined to the house except for visits to the doctors and grandparents. And since I try to avoid having the tv on when Noah is awake, that can make some very long days for me! But overall, I love being here with him, watching him change every day, and I am dreading going back to work.
He is up to 11 lbs. 13 oz., and he is 23 inches long. This Wednesday he will be 6 months old. It seems like yesterday and at the same time, years ago, that he was born, weighing just 1 lb. 14 oz. and only 12.5 inches long. He is making gains developmentally all the time. He watches Darren and I as we move around the room, and he looks for us whenever he hears our voices. He is smiling all the time now, especially when he first wakes up in the morning. I cannot express what a joy it is to roll over in the morning to say hi to him for the first time that day and see him grin at me from ear to ear, almost as if to say, "Yay, you guys are still here, that's so awesome!!" He has some favorite toys that he also smiles at, and he coos at both us and them. He tries to reach for his toys, and sometimes if he is really into it, he will roll over on to his side to try to get closer to them. And now that he has his tube out and his button in (we had it switched on the 1st) we can do tummy time again and cuddle up with him against our chest. We are loving it!
That's not to say everything is easy, because it definitely isn't. Our first weekend home with him was very rough for me. Darren was working at EMS (his fun part time job) from 9 to 5 on Saturday, our Noah's first full day home. If we had found out earlier that Noah would be coming home when he did, Darren would have found someone to take his shift. But since we had so little notice of Noah's homecoming, and the fact that it was a long weekend, so Darren would still get to have two days off with him, he kept the shift. Well Friday night, when we were getting ready for bed, Darren noticed the tiniest spot of seepage on Noah's onesie where his tube was. That was something we were told to expect, so even though I got a little anxious when he first noticed it, I went to sleep thinking everything was fine. So the next morning Darren got up and left for work while Noah and I cuddled in bed (he doesn't actually sleep in our bed, he sleeps next to it in a co-sleeper, but sometimes in the morning we will bring him in with us just to enjoy some snuggle time). Everything was peachy keen until I went to change Noah's diaper, and noticed that the area around Noah's tube looked very different (in my eyes) than it had the day before. In fact, I was absolutely certain that one of the sutures had pulled loose and that Noah's guts were coming out. I called my mother in a panic to come over, and while she was on her way, I called our home health nursing agency. Since it was a Saturday, I left a message with their answering service and waited to hear back. Keep in mind, Noah appeared perfectly happy, with no discomfort whatsoever, but I was absolutely certain that the stuff I was seeing around his tube had to be his guts. My mother arrived quickly, and she took his temperature for me (twice just in case!) while I listened to the home health nurse return my call only to say that I should contact my pediatrician, who by the way, had yet to meet Noah and therefore knew nothing about him. At this point I was crying and close to hysterics, only holding it together while on the phone. My mother used her cell phone to call my Aunt Bern (who works in a doctors's office and helped take care of her husband's feeding tube) to come over and look at his belly for him, while I called my pediatrician's office to leave a message with their answering service. While waiting, I cried some more, wrung my hands a lot, and tried not to hyperventilate too much. I called Darren at work and made him call Pat, one of our favorite NICU nurses, to ask her to call me back on my mom's phone. I called the pediatrician again, since they still hadn't returned my call, and after being put on hold, was told to call the NICU. WTF!!!! Why were we given all of these contacts outside of the hospital if none of them were going to help me?! So I called the NICU, and they at least were friendly and helpful. After reassuring me that it almost certainly wasn't his guts coming out, they paged Dr. Halter, the surgeon who put Noah's tube in, to call me. And all at once, my help came. Aunt Bern arrived to take one look at the tube and declare it fine, Pat called back to listen to my description and provide reassurance, and Dr. Halter called to explain that the tube had been secured with about five billion sutures, and from what I was describing, he was pretty sure no guts were spilling out. So, after calling Darren to tell him I may have overreacted a little, I got Noah's feed started, put him down to nap, and promptly fell asleep while my mom picked up around the house and unpacked more of the kitchen and bathroom. Later on that weekend, while Darren and I were carefully washing around the tube as instructed, the material previously assumed to be Noah's guts fell off. It was a big old scab. Thus ended the great Homecoming Tube Scare.
And lest we think it would be free sailing from there, we of course had to have a mishap with the button during our first night home. The tube that connects his button to the feeding pump's tube actually has two ports on one end. One port connects to the feeding pump's tube, the other can be used to put medicines through with a syringe. When we put Noah to bed that night, I must not have closed the medicine port all the way after giving him his iron, because it popped open fairly early on in the night. Unfortunately, we didn't realize it until we woke up in the morning when I rolled over to change Noah's diaper and found him soaking wet and cold up to his waist, having slept in a puddle of formula the whole night. I felt soooooooo guilty. And of course, the evening before, I had been reading a piece on infant dehydration in Parenting magazine, and I was certain that having missed his entire night feed, Noah was in danger of becoming seriously dehydrated. So after another panicked call to the pediatrician (I think they are going to begin thinking I am crazy if I keep this up), we were told to just increase his day feeds to catch him up and that he would be just fine. And so it's official - I am a full-fledged hypochondriac. ;o)
Next up, Noah turns 6 months on Wednesday, and Darren will be the big 3 - 0 on Friday.
Go Sox!
Anyways, Noah is thriving being at home. He and I have made a little routine for ourselves, and I think I can safely say that we are both enjoying ourselves. Don't get me wrong, there are days when I get a little stir crazy - we can't take Noah into the public because of his weakened lungs, which means we are confined to the house except for visits to the doctors and grandparents. And since I try to avoid having the tv on when Noah is awake, that can make some very long days for me! But overall, I love being here with him, watching him change every day, and I am dreading going back to work.
He is up to 11 lbs. 13 oz., and he is 23 inches long. This Wednesday he will be 6 months old. It seems like yesterday and at the same time, years ago, that he was born, weighing just 1 lb. 14 oz. and only 12.5 inches long. He is making gains developmentally all the time. He watches Darren and I as we move around the room, and he looks for us whenever he hears our voices. He is smiling all the time now, especially when he first wakes up in the morning. I cannot express what a joy it is to roll over in the morning to say hi to him for the first time that day and see him grin at me from ear to ear, almost as if to say, "Yay, you guys are still here, that's so awesome!!" He has some favorite toys that he also smiles at, and he coos at both us and them. He tries to reach for his toys, and sometimes if he is really into it, he will roll over on to his side to try to get closer to them. And now that he has his tube out and his button in (we had it switched on the 1st) we can do tummy time again and cuddle up with him against our chest. We are loving it!
That's not to say everything is easy, because it definitely isn't. Our first weekend home with him was very rough for me. Darren was working at EMS (his fun part time job) from 9 to 5 on Saturday, our Noah's first full day home. If we had found out earlier that Noah would be coming home when he did, Darren would have found someone to take his shift. But since we had so little notice of Noah's homecoming, and the fact that it was a long weekend, so Darren would still get to have two days off with him, he kept the shift. Well Friday night, when we were getting ready for bed, Darren noticed the tiniest spot of seepage on Noah's onesie where his tube was. That was something we were told to expect, so even though I got a little anxious when he first noticed it, I went to sleep thinking everything was fine. So the next morning Darren got up and left for work while Noah and I cuddled in bed (he doesn't actually sleep in our bed, he sleeps next to it in a co-sleeper, but sometimes in the morning we will bring him in with us just to enjoy some snuggle time). Everything was peachy keen until I went to change Noah's diaper, and noticed that the area around Noah's tube looked very different (in my eyes) than it had the day before. In fact, I was absolutely certain that one of the sutures had pulled loose and that Noah's guts were coming out. I called my mother in a panic to come over, and while she was on her way, I called our home health nursing agency. Since it was a Saturday, I left a message with their answering service and waited to hear back. Keep in mind, Noah appeared perfectly happy, with no discomfort whatsoever, but I was absolutely certain that the stuff I was seeing around his tube had to be his guts. My mother arrived quickly, and she took his temperature for me (twice just in case!) while I listened to the home health nurse return my call only to say that I should contact my pediatrician, who by the way, had yet to meet Noah and therefore knew nothing about him. At this point I was crying and close to hysterics, only holding it together while on the phone. My mother used her cell phone to call my Aunt Bern (who works in a doctors's office and helped take care of her husband's feeding tube) to come over and look at his belly for him, while I called my pediatrician's office to leave a message with their answering service. While waiting, I cried some more, wrung my hands a lot, and tried not to hyperventilate too much. I called Darren at work and made him call Pat, one of our favorite NICU nurses, to ask her to call me back on my mom's phone. I called the pediatrician again, since they still hadn't returned my call, and after being put on hold, was told to call the NICU. WTF!!!! Why were we given all of these contacts outside of the hospital if none of them were going to help me?! So I called the NICU, and they at least were friendly and helpful. After reassuring me that it almost certainly wasn't his guts coming out, they paged Dr. Halter, the surgeon who put Noah's tube in, to call me. And all at once, my help came. Aunt Bern arrived to take one look at the tube and declare it fine, Pat called back to listen to my description and provide reassurance, and Dr. Halter called to explain that the tube had been secured with about five billion sutures, and from what I was describing, he was pretty sure no guts were spilling out. So, after calling Darren to tell him I may have overreacted a little, I got Noah's feed started, put him down to nap, and promptly fell asleep while my mom picked up around the house and unpacked more of the kitchen and bathroom. Later on that weekend, while Darren and I were carefully washing around the tube as instructed, the material previously assumed to be Noah's guts fell off. It was a big old scab. Thus ended the great Homecoming Tube Scare.
And lest we think it would be free sailing from there, we of course had to have a mishap with the button during our first night home. The tube that connects his button to the feeding pump's tube actually has two ports on one end. One port connects to the feeding pump's tube, the other can be used to put medicines through with a syringe. When we put Noah to bed that night, I must not have closed the medicine port all the way after giving him his iron, because it popped open fairly early on in the night. Unfortunately, we didn't realize it until we woke up in the morning when I rolled over to change Noah's diaper and found him soaking wet and cold up to his waist, having slept in a puddle of formula the whole night. I felt soooooooo guilty. And of course, the evening before, I had been reading a piece on infant dehydration in Parenting magazine, and I was certain that having missed his entire night feed, Noah was in danger of becoming seriously dehydrated. So after another panicked call to the pediatrician (I think they are going to begin thinking I am crazy if I keep this up), we were told to just increase his day feeds to catch him up and that he would be just fine. And so it's official - I am a full-fledged hypochondriac. ;o)
Next up, Noah turns 6 months on Wednesday, and Darren will be the big 3 - 0 on Friday.
Go Sox!
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