JenaW
02-17-2006, 08:45 PM
Hello ladies!
Sorry it has been so long. Life here is out of control, even on the "calm" days.
Natalie is doing pretty well. I can't remember when I last updated, so I'll give you a brief synopsis of the last month or so. I think you knew she had bilateral hernia surgery. The surgery was fine, and even though we had it done at a large teaching hospital, we were able to have the attending anesthesiologist and surgeon do the entire case WITHOUT residents (benefits of being married to a doctor, I guess). However, at her follow-up, the surgeon was a bit concerned that her incisions seemed rather lumpy...I guess the hernias were pretty large, and he is worried that they might develop into a direct hernia (through the abdominal wall) since her abdominal muscles are so underdeveloped, and unable to hold the scar tissue in place. Hopefully, as she grows, the "lumps" will become less noticeable, otherwise she may need another surgery to fix that.
We just got back from our weekly visits to the pediatrician, and Natalie is FINALLY on an upswing weight-wise. We had a few weeks where she was losing, and was getting threatened with a g-tube (surgically inserted feeding tube directly into her stomach) and all kinds of other nasty stuff. Luckily, adding MORE calories, MCT oil (pure fat), and increasing her zantac and starting reglan has seemed to do the trick. Today she was 7 pounds 1 ounce!!! I am not sure who was more excited, the pedi or me. I am still breastfeeding, although she gets 2-3 bottles a day with the "extra stuff." Apparently breastmilk only has 20 calories/ounce, where she is getting nearly 32 with the fortifier and MCT oil. Thankfully, my pedi is very pro-breastfeeding and said we would exhaust all other measures before he told me to stop BFing all together, and it seems to be working right now.
Let's see - she passed her hearing test last week! In the NICU, she failed on one side, so we were concerned about that, but it seems she CAN hear! It is hard to tell at home...since the NICU was so loud, she does not seem to be bothered by (or startle to) loud sounds. As you can imagine, my tiny house with Carter and Maddie yelling all the time is pretty noisy, but she just ignores it. I was beginning to get worried that maybe she couldn't hear, but that doesn't seem to be the case. We also got a clean bill from the eye doctor last week. He said her eyes have fully developed, and there is only mild retinopathy. We don't go back for several months, and he has no long-term concerns for her.
Developmentally, she seems to be on track for her adjusted age. It is hard to believe she is 5 months old today, but only about 1 1/2 months adjusted. She has pretty good head control, and tracks objects well. She doesn't have a total social smile yet, but she does seem like she is starting to. Her eyes light up and she looks as if she wants to smile, but doesn't quite get the lip movement yet. Maybe in a few more days! We have a great early intervention program in our county, and our therapist comes to our house every 3-4 weeks to monitor her development. Even though there is not a lot to look for now, and most of the major issues (cerebral palsy, major delays) are not apparent until 9 months or more, it is nice to know that someone else besides me is keeping an eye on her. With Carter and Madigan we were so laid back. Carter was a bit slow on his motor milestones because of the botulism, and we knew he would catch up at his own pace, and he did. Maddie was a bit slow on sitting/crawling/standing/walking too, but alot of that occurred when I was in the hospital and during the NICU phase, so that might have delayed her a bit. We were never concerned with them, but with a preemie, it is a different story. I feel like I am waiting for the other shoe to drop. I wish I could be more laid back with Natalie too, but then I am afraid I will miss something.
The only other major issues right now are her lungs and voice. Her cry, although audible, is still pretty weak. It was made apparent to me last week while at church. I heard a newborn cry and realized just how quiet Natalie's voice actually is. She is scheduled to have a "scope" done in a few weeks by an ENT surgeon. He is going to put a camera down her throat and look at her vocal cords to assess the damage. We are not really sure what to expect. Best case scenario - there is something small that he can laser off and her voice should normalize. Worst case - she has one or both cords paralyzed. If one is paralyzed open it could become more of a concern when she starts solids, since she could theoretically aspirate into her lungs (NOT GOOD!). He is also going to look at her esophagus and take biopsies to evaluate the reflux, and check out her lungs and bronchi too. DH, as an anesthesia resident, has seen several of these procedures done, and is not much more thrilled with the idea of it than I am. Apparently the complications, although rare, can be very devastating. So you know me, I am convinced she is going to end up in the ICU on a vent for several days until they can do another surgery to repair the hole they put in her esophagus (esophageal perforations are one of the "rare complications!") More likely, she will be fine, we will spend the requisiste 24 hours so they can monitor her (she is prone to dropping her heart rate and not breathing from the anesthesia), and then go home. But you know how I am - I need more drama in my life...
Although we are anxious about this, it really needs to be done. During the past few weeks, she has begun having what we think are laryngospasms - basically something (reflux??) triggers a reflex that makes her start choking on saliva and gasping for air. When this happens, she turns purple, drops her sats, (setting off her monitor alarms), and often stops breathing. However, getting her to move air can be pretty difficult as her airway gets closed off some how. It is pretty scary when it happens. Usually it breaks on its own within 90 seconds to 2-3 minutes or so, and I feel so helpless because there is not much I can do besides crank up her oxygen (which isn't much help if she is not moving air) and try to calm her down. Luckily they are only happening every 4-6 days, and seem to be getting less intense.
As for her lungs, we really have no clue how they are doing, but the doctors speculate that as she grows, she will grow more (healthy) lung tissue and eventually stronger lungs. She will never run a marathon, and will most likely have asthma or some form of airway disease, but should be fine for most daily activities. We have been extremely fortunate that she has not gotten sick yet, as even the mildest cold could require her to be intubated and back on a ventilator. We haven't really been able to wean down on her oxygen much, but the doctors aren't too worried about that until the winter (and RSV season) are over.
Carter and Maddie are doing well. They keep me on my toes, and many days send me longing for a hot bubble bath and lots of ice cream (either that or alcohol). My NICU diet program where I lost nearly 20 pounds is long gone, and I am adding some "winter insulation" back on. I don't get much peace and quiet. I am lucky if I get to shower more than once a week (usually my Sunday bath before Church is all I get), and I NEVER get to go to the bathroom without SOMEONE screaming for me. But (MOST of the time) I am enjoying it. I constantly remind myself that I am very lucky, and given our history of multiple miscarriages, I know all too well that I could still be trying desparately for baby number one. So when I am feeling overwhelmed, I remember how blessed I really am. All in all they are great kids, but they definitely try my patience. I can't believe Carter will be three in May, and starting pre-school in the fall. Maddie is 17 months, and talking up a storm, usually in paragraphs!! She copies EVERYTHING that her older brother does, and is absolutely fearless when it comes to trying new things (such as diving off the the back of the couch onto piles of blankets on the floor). One of these days one of them is going to break something (hopefully it will just be a lamp, and not an arm or leg or worse!).
I don't have any new pictures yet. There are a bunch on the camera that haven't been uploaded, so hopefully I can post some soon.
~J
Jera
Mom to Carter ~ 05.13.03, Madigan ~ 09.28.04, & Natalie ~ 09.17.05
Sorry it has been so long. Life here is out of control, even on the "calm" days.
Natalie is doing pretty well. I can't remember when I last updated, so I'll give you a brief synopsis of the last month or so. I think you knew she had bilateral hernia surgery. The surgery was fine, and even though we had it done at a large teaching hospital, we were able to have the attending anesthesiologist and surgeon do the entire case WITHOUT residents (benefits of being married to a doctor, I guess). However, at her follow-up, the surgeon was a bit concerned that her incisions seemed rather lumpy...I guess the hernias were pretty large, and he is worried that they might develop into a direct hernia (through the abdominal wall) since her abdominal muscles are so underdeveloped, and unable to hold the scar tissue in place. Hopefully, as she grows, the "lumps" will become less noticeable, otherwise she may need another surgery to fix that.
We just got back from our weekly visits to the pediatrician, and Natalie is FINALLY on an upswing weight-wise. We had a few weeks where she was losing, and was getting threatened with a g-tube (surgically inserted feeding tube directly into her stomach) and all kinds of other nasty stuff. Luckily, adding MORE calories, MCT oil (pure fat), and increasing her zantac and starting reglan has seemed to do the trick. Today she was 7 pounds 1 ounce!!! I am not sure who was more excited, the pedi or me. I am still breastfeeding, although she gets 2-3 bottles a day with the "extra stuff." Apparently breastmilk only has 20 calories/ounce, where she is getting nearly 32 with the fortifier and MCT oil. Thankfully, my pedi is very pro-breastfeeding and said we would exhaust all other measures before he told me to stop BFing all together, and it seems to be working right now.
Let's see - she passed her hearing test last week! In the NICU, she failed on one side, so we were concerned about that, but it seems she CAN hear! It is hard to tell at home...since the NICU was so loud, she does not seem to be bothered by (or startle to) loud sounds. As you can imagine, my tiny house with Carter and Maddie yelling all the time is pretty noisy, but she just ignores it. I was beginning to get worried that maybe she couldn't hear, but that doesn't seem to be the case. We also got a clean bill from the eye doctor last week. He said her eyes have fully developed, and there is only mild retinopathy. We don't go back for several months, and he has no long-term concerns for her.
Developmentally, she seems to be on track for her adjusted age. It is hard to believe she is 5 months old today, but only about 1 1/2 months adjusted. She has pretty good head control, and tracks objects well. She doesn't have a total social smile yet, but she does seem like she is starting to. Her eyes light up and she looks as if she wants to smile, but doesn't quite get the lip movement yet. Maybe in a few more days! We have a great early intervention program in our county, and our therapist comes to our house every 3-4 weeks to monitor her development. Even though there is not a lot to look for now, and most of the major issues (cerebral palsy, major delays) are not apparent until 9 months or more, it is nice to know that someone else besides me is keeping an eye on her. With Carter and Madigan we were so laid back. Carter was a bit slow on his motor milestones because of the botulism, and we knew he would catch up at his own pace, and he did. Maddie was a bit slow on sitting/crawling/standing/walking too, but alot of that occurred when I was in the hospital and during the NICU phase, so that might have delayed her a bit. We were never concerned with them, but with a preemie, it is a different story. I feel like I am waiting for the other shoe to drop. I wish I could be more laid back with Natalie too, but then I am afraid I will miss something.
The only other major issues right now are her lungs and voice. Her cry, although audible, is still pretty weak. It was made apparent to me last week while at church. I heard a newborn cry and realized just how quiet Natalie's voice actually is. She is scheduled to have a "scope" done in a few weeks by an ENT surgeon. He is going to put a camera down her throat and look at her vocal cords to assess the damage. We are not really sure what to expect. Best case scenario - there is something small that he can laser off and her voice should normalize. Worst case - she has one or both cords paralyzed. If one is paralyzed open it could become more of a concern when she starts solids, since she could theoretically aspirate into her lungs (NOT GOOD!). He is also going to look at her esophagus and take biopsies to evaluate the reflux, and check out her lungs and bronchi too. DH, as an anesthesia resident, has seen several of these procedures done, and is not much more thrilled with the idea of it than I am. Apparently the complications, although rare, can be very devastating. So you know me, I am convinced she is going to end up in the ICU on a vent for several days until they can do another surgery to repair the hole they put in her esophagus (esophageal perforations are one of the "rare complications!") More likely, she will be fine, we will spend the requisiste 24 hours so they can monitor her (she is prone to dropping her heart rate and not breathing from the anesthesia), and then go home. But you know how I am - I need more drama in my life...
Although we are anxious about this, it really needs to be done. During the past few weeks, she has begun having what we think are laryngospasms - basically something (reflux??) triggers a reflex that makes her start choking on saliva and gasping for air. When this happens, she turns purple, drops her sats, (setting off her monitor alarms), and often stops breathing. However, getting her to move air can be pretty difficult as her airway gets closed off some how. It is pretty scary when it happens. Usually it breaks on its own within 90 seconds to 2-3 minutes or so, and I feel so helpless because there is not much I can do besides crank up her oxygen (which isn't much help if she is not moving air) and try to calm her down. Luckily they are only happening every 4-6 days, and seem to be getting less intense.
As for her lungs, we really have no clue how they are doing, but the doctors speculate that as she grows, she will grow more (healthy) lung tissue and eventually stronger lungs. She will never run a marathon, and will most likely have asthma or some form of airway disease, but should be fine for most daily activities. We have been extremely fortunate that she has not gotten sick yet, as even the mildest cold could require her to be intubated and back on a ventilator. We haven't really been able to wean down on her oxygen much, but the doctors aren't too worried about that until the winter (and RSV season) are over.
Carter and Maddie are doing well. They keep me on my toes, and many days send me longing for a hot bubble bath and lots of ice cream (either that or alcohol). My NICU diet program where I lost nearly 20 pounds is long gone, and I am adding some "winter insulation" back on. I don't get much peace and quiet. I am lucky if I get to shower more than once a week (usually my Sunday bath before Church is all I get), and I NEVER get to go to the bathroom without SOMEONE screaming for me. But (MOST of the time) I am enjoying it. I constantly remind myself that I am very lucky, and given our history of multiple miscarriages, I know all too well that I could still be trying desparately for baby number one. So when I am feeling overwhelmed, I remember how blessed I really am. All in all they are great kids, but they definitely try my patience. I can't believe Carter will be three in May, and starting pre-school in the fall. Maddie is 17 months, and talking up a storm, usually in paragraphs!! She copies EVERYTHING that her older brother does, and is absolutely fearless when it comes to trying new things (such as diving off the the back of the couch onto piles of blankets on the floor). One of these days one of them is going to break something (hopefully it will just be a lamp, and not an arm or leg or worse!).
I don't have any new pictures yet. There are a bunch on the camera that haven't been uploaded, so hopefully I can post some soon.
~J
Jera
Mom to Carter ~ 05.13.03, Madigan ~ 09.28.04, & Natalie ~ 09.17.05