It's easy to keep my spirits up when I have this one to keep me company all day :-)
http://www.facebook.com/home.php?#!/video/video.php?v=414284130840
Wednesday, July 14, 2010
That Time Of Year
This post isn't the usual Chloe post. It's more about me and it's probably not going to be super upbeat....just to warn you.
I've followed a few micro-preemie/single-survivor-twin blogs since Chloe was born. They've been SUCH a blessing! I was armed with knowledge during Chloe's NICU stay and knew the right questions to ask and expected some things that would have otherwise surprised me. Of course, there were still plenty of shockers and plenty of times when this non-medical mom struggled to grasp exactly what was going on with Chloe's little body. And it didn't end in the NICU. There are still plenty of struggles that Chloe shares with her little buddies. I eagerly read my friends' blogs to learn new tips and techniques and understand struggles that may (or may not) be forthcoming for Chloe.
So with all this experience to guide me I knew what was coming for me. I knew this time of the year would be difficult. But I had time to prepare myself. I was rocking Chloe the first time I started traveling back to last year. And it occurred to me that my pregnancy planner was somewhere in my room or Chloe's room. (This book had a weekly planner where I kept doctor's appointments and noted any and all important information. At the beginning of the pregnancy I marked the pregnancy test date, my weight and measurements, exercise routine, diet/cravings, pregnancy symptoms, etc. Then I marked the date we found out we were having twins!, TTTS diagnosis, bedrest, Girls!, laser surgery, Leila's blood transfusion, Leila's passing.) I decided that day, sitting in the glider with Chloe snoozing in my arms, that I would NOT look for the planner. Knowing exactly what was going on last year would just be too much for me. Then I had a little conversation with Leila about how much I love her and that she should know just how much I miss her even if I don't fall into despair reminiscing last year.
I'm certain I cried more during the last two months of pregnancy than the whole rest of my life combined. Those two months were pretty much a constant flow of fear, surgery, more fear, more surgery, loss, and sorrow. Even the happy memories, like kicks and ultrasounds, bring tears. So, what happened after I made the decision to avoid the planner? I've done pretty well, I must say. I think about the planner about once a day and force the thought aside. It's easier since the only date I remember for sure is Leila's angel day. I could probably calculate the other dates but it's easy to not do that. Thank God I haven't run across that planner!
I cry periodically, yes, but that's usually brief. Last night was my first really big cry. I came across some ultrasound pictures while cleaning out Chloe's room and decided to put Leila's pictures in her memory box. I can't ever touch her memory box without opening it up and looking at the photographs we took of her or touching her little blanket and outfits that she wore in the hospital. Fortunately, the girls were asleep and Dave was home. He gives really good hugs and his heart beats loudly so I just snuggled in his chest for a while and that felt lovely.
Oooh. I know I can make it through the next month and a half without falling to pieces. I'm doing SO well! If you're so inclined please feel free to send some good energy my way. I just might find a good use for it.
I've followed a few micro-preemie/single-survivor-twin blogs since Chloe was born. They've been SUCH a blessing! I was armed with knowledge during Chloe's NICU stay and knew the right questions to ask and expected some things that would have otherwise surprised me. Of course, there were still plenty of shockers and plenty of times when this non-medical mom struggled to grasp exactly what was going on with Chloe's little body. And it didn't end in the NICU. There are still plenty of struggles that Chloe shares with her little buddies. I eagerly read my friends' blogs to learn new tips and techniques and understand struggles that may (or may not) be forthcoming for Chloe.
So with all this experience to guide me I knew what was coming for me. I knew this time of the year would be difficult. But I had time to prepare myself. I was rocking Chloe the first time I started traveling back to last year. And it occurred to me that my pregnancy planner was somewhere in my room or Chloe's room. (This book had a weekly planner where I kept doctor's appointments and noted any and all important information. At the beginning of the pregnancy I marked the pregnancy test date, my weight and measurements, exercise routine, diet/cravings, pregnancy symptoms, etc. Then I marked the date we found out we were having twins!, TTTS diagnosis, bedrest, Girls!, laser surgery, Leila's blood transfusion, Leila's passing.) I decided that day, sitting in the glider with Chloe snoozing in my arms, that I would NOT look for the planner. Knowing exactly what was going on last year would just be too much for me. Then I had a little conversation with Leila about how much I love her and that she should know just how much I miss her even if I don't fall into despair reminiscing last year.
I'm certain I cried more during the last two months of pregnancy than the whole rest of my life combined. Those two months were pretty much a constant flow of fear, surgery, more fear, more surgery, loss, and sorrow. Even the happy memories, like kicks and ultrasounds, bring tears. So, what happened after I made the decision to avoid the planner? I've done pretty well, I must say. I think about the planner about once a day and force the thought aside. It's easier since the only date I remember for sure is Leila's angel day. I could probably calculate the other dates but it's easy to not do that. Thank God I haven't run across that planner!
I cry periodically, yes, but that's usually brief. Last night was my first really big cry. I came across some ultrasound pictures while cleaning out Chloe's room and decided to put Leila's pictures in her memory box. I can't ever touch her memory box without opening it up and looking at the photographs we took of her or touching her little blanket and outfits that she wore in the hospital. Fortunately, the girls were asleep and Dave was home. He gives really good hugs and his heart beats loudly so I just snuggled in his chest for a while and that felt lovely.
Oooh. I know I can make it through the next month and a half without falling to pieces. I'm doing SO well! If you're so inclined please feel free to send some good energy my way. I just might find a good use for it.
Friday, July 9, 2010
A Little More Oxygen
We went to the retinologist on Wednesday. This is the doctor in Cincinnati who did Chloe's cataract surgery, but who's also checking Chloe's retinas to make sure the ROP isn't continuing to do any damage to her eyes. The good news is that she looks great! He isn't seeing any further damage. Yay!
Last week we saw my favorite doctor, Chloe's pulmonalogist. I had my plan in place. Her appointment was at 2:20 but her feeding time is 2pm. It takes 30 minutes to get to the hospital, so it would be too early to feed Chloe before leaving home. I decided to arrive at her appointment 30 minutes early and feed her there. The added bonus would be that she would have a full belly for her weigh in. Hee hee hee. I was determined to get that gold star... My mistake was that I checked in before sitting down. I hardly pulled the bottle out of the diaper bag before they called her name! Dratz! My evil plan was foiled again!!!
Dr. Sobande did his usual grams/day calculation and determined that at 13lb 7oz Chloe only gained 18g per day over the past three months. It's not bad but not as good as the last time he saw her. I reminded him that there was a cataract surgery, healing, a cold or two, etc etc in there. It HAS been three months, you know. He agreed and reminded me that it's not "bad" weight gain - just not "great." Then I dropped the bomb. "Soooo, I thought I should mention that, during the last couple of weeks, Chloe has dozed off toward the end of her bottles a few times a day. Plus, she breathes quickly when doing something strenuous - like having a fit or playing hard." I held my breath as his eyebrows went up. He thanked me for telling him because many people wouldn't tell him that. The truth is that I knew I had to tell him but didn't WANT to. How did he know that?!?
The outcome is that Chloe's back on oxygen for feedings. And we're raising her O2 from 1/8 or a liter to 1/4 or a liter. No, he said, this will not slow her lung growth or development. Her lungs are still working hard. We're just giving her a little more help. Her body will burn fewer calories trying to keep her whole body oxygenated. All right. I can wrestle her canula on a few times a day. This is not a big deal.
I also noted that she spits up frequently. It's only about 2Tbsp per bottle but it's pretty consistent. We have a super hard time getting a burp out of her. I'll pat her back for like 10 minutes and nothing. Different burping positions. Nothing. 5-10 minutes later - spitup. He prescribed Zantac. I'm not sure why, but I'm scared to give it to her. I've had it for two days now and have yet to start. The weird thing is that she hasn't been spitting up like she usually does. I wonder if the added oxygen could have anything to do with it? I asked if he thought the spitup could have anything to do with her lungs. I assumed it was just a tiny bit of reflux. He agreed. I think I'll hold off on the Zantac for now, though. I hate to give her anything she doesn't really really need.
Last week we saw my favorite doctor, Chloe's pulmonalogist. I had my plan in place. Her appointment was at 2:20 but her feeding time is 2pm. It takes 30 minutes to get to the hospital, so it would be too early to feed Chloe before leaving home. I decided to arrive at her appointment 30 minutes early and feed her there. The added bonus would be that she would have a full belly for her weigh in. Hee hee hee. I was determined to get that gold star... My mistake was that I checked in before sitting down. I hardly pulled the bottle out of the diaper bag before they called her name! Dratz! My evil plan was foiled again!!!
Dr. Sobande did his usual grams/day calculation and determined that at 13lb 7oz Chloe only gained 18g per day over the past three months. It's not bad but not as good as the last time he saw her. I reminded him that there was a cataract surgery, healing, a cold or two, etc etc in there. It HAS been three months, you know. He agreed and reminded me that it's not "bad" weight gain - just not "great." Then I dropped the bomb. "Soooo, I thought I should mention that, during the last couple of weeks, Chloe has dozed off toward the end of her bottles a few times a day. Plus, she breathes quickly when doing something strenuous - like having a fit or playing hard." I held my breath as his eyebrows went up. He thanked me for telling him because many people wouldn't tell him that. The truth is that I knew I had to tell him but didn't WANT to. How did he know that?!?
The outcome is that Chloe's back on oxygen for feedings. And we're raising her O2 from 1/8 or a liter to 1/4 or a liter. No, he said, this will not slow her lung growth or development. Her lungs are still working hard. We're just giving her a little more help. Her body will burn fewer calories trying to keep her whole body oxygenated. All right. I can wrestle her canula on a few times a day. This is not a big deal.
I also noted that she spits up frequently. It's only about 2Tbsp per bottle but it's pretty consistent. We have a super hard time getting a burp out of her. I'll pat her back for like 10 minutes and nothing. Different burping positions. Nothing. 5-10 minutes later - spitup. He prescribed Zantac. I'm not sure why, but I'm scared to give it to her. I've had it for two days now and have yet to start. The weird thing is that she hasn't been spitting up like she usually does. I wonder if the added oxygen could have anything to do with it? I asked if he thought the spitup could have anything to do with her lungs. I assumed it was just a tiny bit of reflux. He agreed. I think I'll hold off on the Zantac for now, though. I hate to give her anything she doesn't really really need.
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