So, the big question...What DOES a stay-at-home mom do all day?? Working men everywhere are dying to know. Recently, "somebody" determined a SAHM's salary would be $134,000 for all she does. Here's how I earn mine on a typical (non-doctor visit) day.
We'll start at just before midnight...
11:45pm - prepare for 12am feed
Pull out bottles and put in water to warm. Draw meds. Tube Abby (worst part). Comfort crying baby. Lay Abby down. Start gavage feed.
12am - 1am Feed girls
Pick up Nat. Give meds. Start bottle and hope she eats. After about 20 minutes, she quits. Put down. Take break. Try again. Repeat as needed. Somewhere during the hour, pause Abby's feed and push her meds.
1am-1:30-45am
Pump, pump, pump while watching shows on DVR. Current favorites: Ramsy's Kitchen Nightmares; Top Chef; America's Iron Chef and America's Next Iron Chef; Meercat Manor; Will and Grace
1:45-2:45am
Variations: continue to watch tv; try to blog; surf net; attempt to do paperwork (bills, thank you notes, etc) and realize I'm too tired; clean bottles, nipples, and kitchen; make bottles for rest of night; try to go to sleep before 3am feed - usally big mistake since I can barely drag myself out of bed.
2:45-4am
repeat 12am feed with the variation of usually falling asleep while holding and trying to feed girls. Also, add extra frustration of Natalie being too sleepy to eat in the middle of the night
4ish - 8:45am
Sleep
8:45am
Try to drag myself out of bed for 9am feeding. Usually fail. Success by 9:30 or 10m.
9am (if lucky) really 10am - 11am
Untube Abby; Prepare bottles, meds, etc. Feed Nat. Nat quits. Put Nat down. Feed Abby. Abby quits. Put Abby down. Feed Nat. Repeat until bottles are finished or one hour passes - whichever comes first.
Day now started, usually an hour behind. Girls awake. I need very much to pump. Put girls on floor - hope they play while pumping for about 30 minutes.
12 NOON - Mommy's favorite time of day. Daddy comes home for lunch!! If on schedule, help feed at 12:00. If off schedule, Daddy plays with girls while mommy pumps (if I haven't been able to). Try to start 12pm feed at 12:30 to get back on schedule. Repeat feeding schedule with Ben's help.
1:30ish - play with girls
2:30ish - probably need to pump again. Girls either went to sleep after lunch and are now up or have fallen asleep and I can pump.
3pm - try to get back on schedule. Prepare bottles, meds, feed Nat; feed abby; feed nat; feed abby, etc.
4ish - 6ish - hopefully find time to play with girls and pump.
5:45 - prepare for 6pm feed.
6pm - Ben walks in to save the day! Feed girls
7ish- 8:45 - play; pump; eat something
8:45pm - prepare for feed
9pm - Feed girls
10pm - Ben to bed; girls to bed;
10ish-11:45pm - Mommy pumps; pretends to do paperwork, but too tired and usually just surfs web; tries to post, but finds it hard to be clever since I'm too tired.
11:45pm - Print girls' schedule (feeds, meds, charts to record amounts taken) for next few days and Start all over.
It's amazing how quickly the two hours pass between the end of one feed and start of another. In fact - it's 11:50pm, and time to start the day...
I'm still waiting for my check...
Tuesday, October 30, 2007
Friday, October 26, 2007
Feeding update
Feeding continues to be a big issue. *big sigh* I keep reminding myself that it could be much worse. Our girls are so healthy and happy. There are so many children who are so much more sick and require so much more care. At least our girls have throats and stomachs. Some kids doesn't even have that. Still, when trying to feed the girls, it's hard to feel thankful.
Here's the latest...
Abby has not been progressing as hoped. She hates her NG tube. She refuses to eat well when it is in. It had become a Catch-22. She can't get rid of the tube because she isn't eating enough. But, she won't eat enough with the tube in. So, she can't get rid of the tube. You see the dilemma. So we have a new plan.
Currently, we are tubing Abby only at night. She receives a gavage only feeding at 12am, 3am, and 6am. We give her 120mls over 1 hour. If she tolerates that amount, we will increase it to 150mls. After the 6am feed, we will take out the tube and give her a bottle from 9am to 9pm. During the day she needs to average 45mls per feed. If she does this, she will get enough calories and hopefully gain more weight.
This little plan is actually a temporary fix. We have decided to go with the G-tube. If you remember, that will be inserted surgically, directly into her stomach. We will probably follow a similar schedule of oral feedings during the day and gavage at night. The benefit is that the tube will be out of her throat and we won't have to put it in and out - which is a very uncomfortable procedure for Abby and emotionally awful for us. She first has to get a gastric emptying study (looks at how the stomach empties) so she can then be scheduled with the surgeon. We have no idea how long that will be. Hopefully only a week or two more. There is a chance she will improve considerably on the new off days/on nights schedule and we won't have to do it at all. We can only hope.
Now, for Natalie. I had thought Natalie was doing quite well, but when I looked at the data in my nifty little charts, I realized she was falling short about 150mls per day. That's quite a lot. When a pediatrician appointment Tuesday revealed she's only gained a few ounces, we decided to tube her at night as well. We just hated doing it. So did she. I was so worried we'd have to consider a g-tube for her as well. It felt so awful going backwards.
The good news is the doctor today at the Duke Clinic was okay with her weight gain. He said we did not need to tube her at all. Instead, we are adding more Elecare to the breast milk to make it more caloric. Since she's getting more bang for her buck, she can eat less. She still needs to average about 50ml per feed. She should be able to do this. (Abby is also getting the souped up breast milk.) We are hopeful this will keep Natalie heading in the right direction. If we don't feel we have to force her to eat so much, maybe her feedings will be more pleasant and maybe she'll eat more.
Woo - that's a lot of rather technical info about eating. Bottom line: Nat - doing okay. Abby - not as good - getting g-tube soon. Stay tuned for updates...
Here's the latest...
Abby has not been progressing as hoped. She hates her NG tube. She refuses to eat well when it is in. It had become a Catch-22. She can't get rid of the tube because she isn't eating enough. But, she won't eat enough with the tube in. So, she can't get rid of the tube. You see the dilemma. So we have a new plan.
Currently, we are tubing Abby only at night. She receives a gavage only feeding at 12am, 3am, and 6am. We give her 120mls over 1 hour. If she tolerates that amount, we will increase it to 150mls. After the 6am feed, we will take out the tube and give her a bottle from 9am to 9pm. During the day she needs to average 45mls per feed. If she does this, she will get enough calories and hopefully gain more weight.
This little plan is actually a temporary fix. We have decided to go with the G-tube. If you remember, that will be inserted surgically, directly into her stomach. We will probably follow a similar schedule of oral feedings during the day and gavage at night. The benefit is that the tube will be out of her throat and we won't have to put it in and out - which is a very uncomfortable procedure for Abby and emotionally awful for us. She first has to get a gastric emptying study (looks at how the stomach empties) so she can then be scheduled with the surgeon. We have no idea how long that will be. Hopefully only a week or two more. There is a chance she will improve considerably on the new off days/on nights schedule and we won't have to do it at all. We can only hope.
Now, for Natalie. I had thought Natalie was doing quite well, but when I looked at the data in my nifty little charts, I realized she was falling short about 150mls per day. That's quite a lot. When a pediatrician appointment Tuesday revealed she's only gained a few ounces, we decided to tube her at night as well. We just hated doing it. So did she. I was so worried we'd have to consider a g-tube for her as well. It felt so awful going backwards.
The good news is the doctor today at the Duke Clinic was okay with her weight gain. He said we did not need to tube her at all. Instead, we are adding more Elecare to the breast milk to make it more caloric. Since she's getting more bang for her buck, she can eat less. She still needs to average about 50ml per feed. She should be able to do this. (Abby is also getting the souped up breast milk.) We are hopeful this will keep Natalie heading in the right direction. If we don't feel we have to force her to eat so much, maybe her feedings will be more pleasant and maybe she'll eat more.
Woo - that's a lot of rather technical info about eating. Bottom line: Nat - doing okay. Abby - not as good - getting g-tube soon. Stay tuned for updates...
Gotta Love Grandma
We've been lucky to have a steady stream of grandma's visit in the last few weeks. The girls are so fortunate to have so much love in their life.
In early October, Ben's mom came to stay from Friday to Tuesday. She was great with the girls and they had a wonderful time getting so much attention. Ya-Yai also helped with cooking and cleaning and laundry. Yeah Ya-Yai! She also stayed up late with me to help with feedings. Between feeds, we bonded over cooking shows late into the night!
After Ya-Yai, Nana came for the weekend. It was a wonderful relief since I was having serious issues with my milk (see post below). She also helped with cleaning and laundry and feeding. My mom is also a former infant child developmental specialist. That's a long title for "person who knows lots of stuff about infants and what they should be doing when". Well, maybe that's the short way:-) Nana was very helpful in showing us exercises to work on with the girls and evaluating how they are doing developmentally. It was the first weekend Nana had been able to come in a while and she had a great time. The girls were once again thrilled with all the attention.
Finally, last weekend, Nanny was here for a visit. (Poppy was here too, but we are talking grandma's right now:-)) It had been several weeks since they'd seen the girls and were of course surprised at how big they are now. Nanny is amazing at feeding the girls. I don't know what she does, but the girls eat so well for her. There are several houses for sale in our community...I've been trying to get them to buy one and move in! Of course, the girls were once again entertained, held, and loved all over.
The girls really are lucky to have grandparents so close that they can visit so often. The fact that we could be in Maui right now, is never lost on me. Although paradise would have been amazing, we would have desperately missed our extended family. When I see the grandparents with the girls I am so grateful we are here and the girls will grow up knowing their grandparents. I can only hope they have as close a relationship as I have with my amazing grandmother.
In early October, Ben's mom came to stay from Friday to Tuesday. She was great with the girls and they had a wonderful time getting so much attention. Ya-Yai also helped with cooking and cleaning and laundry. Yeah Ya-Yai! She also stayed up late with me to help with feedings. Between feeds, we bonded over cooking shows late into the night!
After Ya-Yai, Nana came for the weekend. It was a wonderful relief since I was having serious issues with my milk (see post below). She also helped with cleaning and laundry and feeding. My mom is also a former infant child developmental specialist. That's a long title for "person who knows lots of stuff about infants and what they should be doing when". Well, maybe that's the short way:-) Nana was very helpful in showing us exercises to work on with the girls and evaluating how they are doing developmentally. It was the first weekend Nana had been able to come in a while and she had a great time. The girls were once again thrilled with all the attention.
Finally, last weekend, Nanny was here for a visit. (Poppy was here too, but we are talking grandma's right now:-)) It had been several weeks since they'd seen the girls and were of course surprised at how big they are now. Nanny is amazing at feeding the girls. I don't know what she does, but the girls eat so well for her. There are several houses for sale in our community...I've been trying to get them to buy one and move in! Of course, the girls were once again entertained, held, and loved all over.
The girls really are lucky to have grandparents so close that they can visit so often. The fact that we could be in Maui right now, is never lost on me. Although paradise would have been amazing, we would have desperately missed our extended family. When I see the grandparents with the girls I am so grateful we are here and the girls will grow up knowing their grandparents. I can only hope they have as close a relationship as I have with my amazing grandmother.
Look Ma - no hands!!
First of all - let's all take a moment and be thankful I didn't post MY picture wearing this contraption.
So - what is that thing, you ask. Well, it's my new time-saving toy. It's a hands-free breast pumping bra. It's wraps around (gotta love Velcro) and the sucker cups go through these littles holes and... Well, you get the picture. It really does work. I can do things with my hands - such as type - as I am right now. Actually, using pump time to blog was part of the reason I bought it. That and trying to not develop carpel tunnel syndrome. I can also play with the babies in a limited way if I need to - at least enough to comfort them.
While on the subject...remember the freezers full of breast milk? ALL GONE. There are two little bags left in my freezer that I'm saving for an emergency. Last week was awful. I've always had a ton of milk, and suddenly, it seemed to disappear. I was freaking out. Not only did I feel guilty for not having pumped more in the weeks before, I was imaging the $500 a month we'd have to spend in formula. It was awful.
Fortunately my mom was here two weekends ago and while she and Ben concentrated on feeding the girls, I pumped all the time. That wasn't much fun either. But it was more fun than running out of milk. The good news is it seemed to do the trick. Things are better now. The children won't starve. This is very good.
Saturday, October 13, 2007
What were they thinking...
This is totally unrelated to anything baby but I just couldn't resist. I saw an advertisement for this show...
"The Most Smartest Model"
Seriously. I'm not kidding. I'm not sure if this is irony or what. The goal is for the models, stereotypically not the brightest bunch, to convince the host they are the "most smartest". Who thinks of these things?
So, for those confused as to why I find this hysterical...an English lesson.
One can not be the "most smartest" anything. One is either the "most smart" or the "smartest". To be the "most smartest" is redundant - and terrible grammar. Perhaps the first challenge of the show is for the contestants to figure out the title of the show is grammatically incorrect!
Perhaps the show should be called, "the most smartest copy-editor, producer, or tv executive"!
"The Most Smartest Model"
Seriously. I'm not kidding. I'm not sure if this is irony or what. The goal is for the models, stereotypically not the brightest bunch, to convince the host they are the "most smartest". Who thinks of these things?
So, for those confused as to why I find this hysterical...an English lesson.
One can not be the "most smartest" anything. One is either the "most smart" or the "smartest". To be the "most smartest" is redundant - and terrible grammar. Perhaps the first challenge of the show is for the contestants to figure out the title of the show is grammatically incorrect!
Perhaps the show should be called, "the most smartest copy-editor, producer, or tv executive"!
Schedule/Smedule
So, we've been messing with "the schedule" to try to find what works best for the girls - and for us. There's a fine line between their needs and our sanity. In the end - we all have to survive.
Basically, the girls needs are to consume enough ml of milk each day to gain weight and grow. Abby is supposed to get at least 600ml and Natalie about 480ml.
Our needs include sleep and maintaining our emotional stability. The concern for the later comes from the frustration we experience over their feeding issues. It's just so hard to struggle with them to eat. We worry about them eating enough or not eating at all. We also worry about them spending too many calories while they are eating since it takes so long for them to eat by mouth. It's a balancing act between calorie intake and calorie expenditure. One of our biggest worries is over Abby, her tube and its pros and cons. Obviously, it's good because we can make sure she gets the amount of food she needs. But, it is also really easy for us to be lazy. It much easy to hook her up than struggle with her to eat for half and hour. Plus, I'm not so sure it doesn't make her lazy. Maybe she can figure out that she gets full whether she eats or not. Our biggest concern is whether the tube contributes to her not eating orally. In other words, does the irritation of it make it more uncomfortable to eat therefore reinforcing the oral aversion. The more we have to feed them, the more frustrated we feel.
So...we are trying to work a schedule that allows fewer feedings during the night (sleep) and maybe fewer feeds (7 per day). We are trying to push the night feeding to 4 hours. So, we would feed at 2am so I'm asleep by 3, and then Ben would feed at 6am and could then go to work at a decent hour (instead of 10:30am). I would feed them again somewhere between 9 and 10am.
After all this scheduling, I can understand why people pay my sister the big bucks to do this for them. Maybe I can get a discount:-)
Basically, the girls needs are to consume enough ml of milk each day to gain weight and grow. Abby is supposed to get at least 600ml and Natalie about 480ml.
Our needs include sleep and maintaining our emotional stability. The concern for the later comes from the frustration we experience over their feeding issues. It's just so hard to struggle with them to eat. We worry about them eating enough or not eating at all. We also worry about them spending too many calories while they are eating since it takes so long for them to eat by mouth. It's a balancing act between calorie intake and calorie expenditure. One of our biggest worries is over Abby, her tube and its pros and cons. Obviously, it's good because we can make sure she gets the amount of food she needs. But, it is also really easy for us to be lazy. It much easy to hook her up than struggle with her to eat for half and hour. Plus, I'm not so sure it doesn't make her lazy. Maybe she can figure out that she gets full whether she eats or not. Our biggest concern is whether the tube contributes to her not eating orally. In other words, does the irritation of it make it more uncomfortable to eat therefore reinforcing the oral aversion. The more we have to feed them, the more frustrated we feel.
So...we are trying to work a schedule that allows fewer feedings during the night (sleep) and maybe fewer feeds (7 per day). We are trying to push the night feeding to 4 hours. So, we would feed at 2am so I'm asleep by 3, and then Ben would feed at 6am and could then go to work at a decent hour (instead of 10:30am). I would feed them again somewhere between 9 and 10am.
After all this scheduling, I can understand why people pay my sister the big bucks to do this for them. Maybe I can get a discount:-)
Girl's first colds
Poor little babies. It's really tough being sick when you can't blow your nose. Little Abby developed her first cold starting Monday. She stopped eating by mouth on Tuesday so we had to put the tube back in (see previous post). Natalie started showing signs early Friday morning. She actually even ran a small fever yesterday - just about 99 degrees. I called the nurse line but apparently they don't even consider a fever a fever until it's 102. I really wasn't worried, but since she's a preemie I figured better safe than sorry.
We have saline drops to loosen the mucus and the "buger bulb" to suck it out. The girls hate that. I can't blame them. I wouldn't want someone sucking stuff out of my nose. The cold is worse on Abby since she already has a tube taking up half of one nostril.
The biggest result of their colds is that neither is eating very well. With Abby, of course, we can just feed her the rest in her tube. With Natalie, we just have to hope she's eating enough to maintain through this cold and that her intake will increase once she's better.
The other result - Mommy thinks she's caught Abby's cold. I also started getting a sore throat on Friday. I've felt pretty well today, but tomorrow may start the stuffy phase. I really hope not. The thing is I can't figure out where the girls caught this cold. No one has been sick around the girls except for allergy symptoms. Maybe I picked something up at all those doctor's appointments...
We have saline drops to loosen the mucus and the "buger bulb" to suck it out. The girls hate that. I can't blame them. I wouldn't want someone sucking stuff out of my nose. The cold is worse on Abby since she already has a tube taking up half of one nostril.
The biggest result of their colds is that neither is eating very well. With Abby, of course, we can just feed her the rest in her tube. With Natalie, we just have to hope she's eating enough to maintain through this cold and that her intake will increase once she's better.
The other result - Mommy thinks she's caught Abby's cold. I also started getting a sore throat on Friday. I've felt pretty well today, but tomorrow may start the stuffy phase. I really hope not. The thing is I can't figure out where the girls caught this cold. No one has been sick around the girls except for allergy symptoms. Maybe I picked something up at all those doctor's appointments...
A Poo on Pooh
Abby is up to her old tricks. After spitting up on her 2nd outfit of the day, I was dressing Abby in a cute little Pooh outfit. Ben likes Pooh, so it was for his benefit. Since she has a little cold, I checked her temperature just to keep up with it. In case you didn't know, sticking things in a little kids bottom is often conducive to pooping. So, there was pooping. Thinking she was done, I proceeded to put on the new outfit and diaper. Ben happened to walk in just about then. Suddenly, with her butt up in the air, Abby let one rip - right onto Mommy's hand and her little Pooh outfit. Daddy laughed and laughed and laughed. Abby hadn't pooed Mommy since her blowout in the NICU where she projectile pooped to the end of her isolette. Oh, and if that wasn't enough, as soon as I removed the diaper, she peed all over everything. So, Mommy pulled out the THIRD outfit of the day, and another diaper.
In the words of Pooh,
Oh bother.
In the words of Pooh,
Oh bother.
Tuesday, October 9, 2007
When plans fail...
Well, our little tube-less experiment didn't work out so well for Abigail. We went to the pediatrician today for a weight check and she had actually lost weight since Friday. (Natalie had gained two ounces and is now 7lb 1 oz).
Poor little Abby did great for the first three days. She started petering out early this morning. In fact, she completely refused her 9am and 12pm feedings. We left at 3 for the doctor and didn't return until almost 6pm. So, she didn't eat anything for nearly 12 hours. She's also having a pooping problem. The girls that used to poop everywhere each time you changed them are now constipated - and somewhat grumpy. At least Abby is. She hasn't had a decent poop since 12am Sunday morning. I think she's been very uncomfortable and that's why she's not eating. I wouldn't want to eat either if my insides were all full.
So, as soon as we got home, I put her feeding tube back in. It was so sad. She sneezed and shook her head. Her poor little eyes watered. I felt awful. But, she needed to eat, so I set up her feed and she went right to sleep. I want to get her strong again and then we will try again.
It is so frustrating when the girls don't eat. It's by far the worst and most emotionally and physically taxing element of having twins. Honestly, if they ate normally, having twins wouldn't be that hard (so far). I think the hardest thing is not having any control over whether or not they eat and how much. That old proverb about the horse and water takes on new meaning. You really can't make them eat. It's a very helpless feeling. At times it seems like Abby will never get it. I try to remember that Natalie has just been home longer and Abby will get it too. Sometimes, though, it's really hard not to get discouraged.
Poor little Abby did great for the first three days. She started petering out early this morning. In fact, she completely refused her 9am and 12pm feedings. We left at 3 for the doctor and didn't return until almost 6pm. So, she didn't eat anything for nearly 12 hours. She's also having a pooping problem. The girls that used to poop everywhere each time you changed them are now constipated - and somewhat grumpy. At least Abby is. She hasn't had a decent poop since 12am Sunday morning. I think she's been very uncomfortable and that's why she's not eating. I wouldn't want to eat either if my insides were all full.
So, as soon as we got home, I put her feeding tube back in. It was so sad. She sneezed and shook her head. Her poor little eyes watered. I felt awful. But, she needed to eat, so I set up her feed and she went right to sleep. I want to get her strong again and then we will try again.
It is so frustrating when the girls don't eat. It's by far the worst and most emotionally and physically taxing element of having twins. Honestly, if they ate normally, having twins wouldn't be that hard (so far). I think the hardest thing is not having any control over whether or not they eat and how much. That old proverb about the horse and water takes on new meaning. You really can't make them eat. It's a very helpless feeling. At times it seems like Abby will never get it. I try to remember that Natalie has just been home longer and Abby will get it too. Sometimes, though, it's really hard not to get discouraged.
Monday, October 8, 2007
Come and get it!!!
No - it's not a chow line, but the long awaited for pictures!!! I've just spent hours into the wee morning picking, labeling, and posting pictures for your enjoyment. Click on the link "pictures and videos" and enjoy.
Sunday, October 7, 2007
Here She Comes to Save the Day!!
Auntie Kimberly arrived early Saturday afternoon to take control and let us sleep. As an infant/twin specialist, she has lots of tricks and lots of experience.
Her first goal was to get them eating.
Step One: Lose the feeding tube. Natalie has had hers out since her appointment on Tuesday. She has been taking all her feeds orally since then. Natalie, as a big sister should, helped Abigail out by pulling out her tube during a nap. So the tube came out yesterday and has been out since.
Step Two: Choose the right nipple. Kimberly made a trip to Babies R Us and bought $60 worth of bottles and nipples. To that Ben and I both responded with "what!". Hopefully, we'll be taking some of those back. She chose some with shorter nipples with the idea that the longer ones were reaching back to their throats and irritating them or making them gag. It's phenomenal how many different kinds of nipples and bottles there are. Poor breast feed babies only have one choice! Honestly, though, I'd rather the girls just have one choice. Maybe after we get this eating thing down and they are continuing to grow well, we'll try breastfeeding again. However, I digress... back to the nipples.
Step Three: Feed, feed, feed. Now that there are three of us, we can feed both at the same time, which saves a lot of time. Our first attempt was great. They both took their full bottles in about 30 minutes. Since then, we've had varied success trying a variety of nipples and combinations. As always, the first 40ml or so, goes great, then the rest is a struggle.
Current assessment: It's going fairly well. Abby actually seems to be doing better than Natalie overall. She really likes the shorter nipples. We've had a harder time finding the perfect nipple for Natalie.
Prognosis: Looking pretty good. The girls may not be taking all of every feed, but sometimes they are taking more than necessary (especially Natalie). Overall, they are doing quite well. I'm hoping to continue to make progress and go into our appointment on Thursday completely tube-free!
Kimberly also saved us by doing all the 3am and 6 am feeds. Ben slept from 12am to 9am. I slept from 1am to nearly 12pm. Ahhh, pure bliss. Thanks Sister. We sure so love you:-)
Her first goal was to get them eating.
Step One: Lose the feeding tube. Natalie has had hers out since her appointment on Tuesday. She has been taking all her feeds orally since then. Natalie, as a big sister should, helped Abigail out by pulling out her tube during a nap. So the tube came out yesterday and has been out since.
Step Two: Choose the right nipple. Kimberly made a trip to Babies R Us and bought $60 worth of bottles and nipples. To that Ben and I both responded with "what!". Hopefully, we'll be taking some of those back. She chose some with shorter nipples with the idea that the longer ones were reaching back to their throats and irritating them or making them gag. It's phenomenal how many different kinds of nipples and bottles there are. Poor breast feed babies only have one choice! Honestly, though, I'd rather the girls just have one choice. Maybe after we get this eating thing down and they are continuing to grow well, we'll try breastfeeding again. However, I digress... back to the nipples.
Step Three: Feed, feed, feed. Now that there are three of us, we can feed both at the same time, which saves a lot of time. Our first attempt was great. They both took their full bottles in about 30 minutes. Since then, we've had varied success trying a variety of nipples and combinations. As always, the first 40ml or so, goes great, then the rest is a struggle.
Current assessment: It's going fairly well. Abby actually seems to be doing better than Natalie overall. She really likes the shorter nipples. We've had a harder time finding the perfect nipple for Natalie.
Prognosis: Looking pretty good. The girls may not be taking all of every feed, but sometimes they are taking more than necessary (especially Natalie). Overall, they are doing quite well. I'm hoping to continue to make progress and go into our appointment on Thursday completely tube-free!
Kimberly also saved us by doing all the 3am and 6 am feeds. Ben slept from 12am to 9am. I slept from 1am to nearly 12pm. Ahhh, pure bliss. Thanks Sister. We sure so love you:-)
Tuesday, October 2, 2007
Pregnant Women and Babies...
Why does everyone want to touch them?? I never actually had perfect strangers try to touch my stomach when I was pregnant. It was probably because I didn't really start to show until just before the girls were born. I've heard many pregnant women complain of this though. I did have my first stranger reach out of touch my baby.
Natalie and I were at the eye doctor last Wednesday. There we were sitting quietly on the adult side of the office (avoiding the kids on the kids side). Natalie was happy in her car seat and I was filling out paperwork. Along came a little old woman. Well, she wasn't that little, nor that old, but it sounds better. She marched right up to the car seat, ogled the baby, and reached right out and touched her hand. WHY do people do this? I know they are cute and cuddly, and I've been tempted before myself, but I know better. Maybe next time I'll reach out and stroke their face or tummy or rub their head? Hmmmm.
Actually, I have these little signs (courtesy of my sister) that hang from the car seat or stroller. They say "Please wash your hands before touching mine". I did have it on the car seat, but the handle was back and it wasn't visible. So, my next line of defense is little signs I've made and laminated. They read, "Preemie Baby - I have a low immune system, please keep your hands from mine". There's a little smiling face to make it nicer. Ben thinks I need to make a visual sign with hands touching a baby and a line through it - like a no smoking sign. He thinks people won't bother to read my sign. Of course, I've seen people stand right in front of no smoking signs and smoke, so, hey, what can you do? I have taken to keeping a blanket covering the car seat so the babies are hidden. It would take a bold soul to walk over and actually lift up a blanket to see a baby. I'll let you all know when it happens:-)
Natalie and I were at the eye doctor last Wednesday. There we were sitting quietly on the adult side of the office (avoiding the kids on the kids side). Natalie was happy in her car seat and I was filling out paperwork. Along came a little old woman. Well, she wasn't that little, nor that old, but it sounds better. She marched right up to the car seat, ogled the baby, and reached right out and touched her hand. WHY do people do this? I know they are cute and cuddly, and I've been tempted before myself, but I know better. Maybe next time I'll reach out and stroke their face or tummy or rub their head? Hmmmm.
Actually, I have these little signs (courtesy of my sister) that hang from the car seat or stroller. They say "Please wash your hands before touching mine". I did have it on the car seat, but the handle was back and it wasn't visible. So, my next line of defense is little signs I've made and laminated. They read, "Preemie Baby - I have a low immune system, please keep your hands from mine". There's a little smiling face to make it nicer. Ben thinks I need to make a visual sign with hands touching a baby and a line through it - like a no smoking sign. He thinks people won't bother to read my sign. Of course, I've seen people stand right in front of no smoking signs and smoke, so, hey, what can you do? I have taken to keeping a blanket covering the car seat so the babies are hidden. It would take a bold soul to walk over and actually lift up a blanket to see a baby. I'll let you all know when it happens:-)
If wishes were nickels...
I'd hire someone to get up at 5am to feed the girls!!! That 5am feed is a killer. I'm okay until the 2am - since I'm a night owl anyway, but then I am more than ready for bed. The 5am is supposed to be Ben's shift, but sometimes it's just too much. He has to go to bed by 10ish pm to feel good enough to do it, so sometimes, I pitch in. I can't blame him. It's just awful. Who said babies need to eat every 3 hours anyways?? They don't seem to mind. They sleep right on through. As a matter of fact, our schedule was off Saturday and Sunday because feeds took longer than usual. I was trying to get back on schedule and was supposed to get up at 3am Sunday morning so they could eat at 5:30am, and then back on schedule at 8am. Somehow, my alarm didn't go off. Next thing I knew, Ben was waking me at 5am asking me if the girls needed feeding. They never even noticed.
All in all things are still good. We have the most ridiculous schedule of doctor appointments. It seems we are there every other day. It's rather ironic, actually. The whole idea of preemies is to keep them away from everyone. So, we have appointments in hospitals and doctor's offices surrounded by who knows what. To make it worse, it's the Children's Hospital and Pediatrician, so we're surrounded by little kids and all their germs. I'm not sure it's a very good system.
Keeping the girls well, notwithstanding, we are happy to receive visitors: well, not sick hand-washing visitors:-) If you are sick, were just sick, or in the close vicinity of someone who is sick, please come another day. You definately want to call first though. See above rant on doctors' appointments.
I know I've promised pictures. It just takes time to pick them and post them and time is a little short right now. I will get to it - I promise...
All in all things are still good. We have the most ridiculous schedule of doctor appointments. It seems we are there every other day. It's rather ironic, actually. The whole idea of preemies is to keep them away from everyone. So, we have appointments in hospitals and doctor's offices surrounded by who knows what. To make it worse, it's the Children's Hospital and Pediatrician, so we're surrounded by little kids and all their germs. I'm not sure it's a very good system.
Keeping the girls well, notwithstanding, we are happy to receive visitors: well, not sick hand-washing visitors:-) If you are sick, were just sick, or in the close vicinity of someone who is sick, please come another day. You definately want to call first though. See above rant on doctors' appointments.
I know I've promised pictures. It just takes time to pick them and post them and time is a little short right now. I will get to it - I promise...
Sunday, September 30, 2007
Hail, Hail the Gang's all Here!!!
Finally, finally, after months and months, our two beautiful girls are both home and our family is complete! Poppy and Nanny arrived Thursday and were amazing helping out this weekend. One would think that more people would allow time for more blogging - not so much. I'm very behind, so sit back for an update!
Abby's Homecoming!
After 137 days, Abby came home Friday afternoon about 3:00pm weighing a 8 lbs 2 oz! Checking her out was very fast. Since we had already done all our training at DRH, there was little to do but take her home. We finally met Dr. Malcolm, who is just wonderful. I'm excited about seeing him again in Clinic with the girls.
Our homecoming was smaller for Abby than Natalie. Poor Abby - already victim to second child syndrome. Poppy and Nanny were here and I did make an effort to take lots of pictures. Our first victory once home was Nanny feeding Abby a bottle and having her take 67ml of 75ml!!!! That's more than she's EVER taken at one time. Ben laughingly suggested we should call Dr. Malcolm and tell him. A little later, the more I thought about it, the better I like the idea. So, in a silly mommy moment, I did:-) She did really well for the first day or so, but the last few feeds has only taken 30ish. But, that's better than at the hospital so at least we are making progress. She's up to 75mls a day!
The girls were absolutely precious together. It's so wonderful having them together. They are so beautiful lying next to each other in their crib. So far, they seem to rest well together. We have had a great time playing on the floor with them, snuggling, and being a family.
The girls seem to be enjoying life as well. Of course, Poppy and Nanny were here through Sunday. Grandpa and Ya-Yai came over Saturday afternoon as well. Needless to say, they have been well pampered, held and loved.
As of Friday afternoon, Natalie weighed in at 6 lbs 10oz. She hasn't gained as quickly as in the hospital, but then again, she's doing more now. It doesn't take much energy to stare at the ceiling and sleep. Last week the doctor had us add Elecare to Natalie's milk for extra calories. Hopefully she will put on weight faster. She also seems to have gotten the hang of the bottle! She has been tube free for about 2 days and taking all her feeds by mouth! Occasionally, she doesn't take a full feed, but we are trying to give her 60mls each time to make up for what she missed.
So - the short of it is - everything is going quite well. Ben will be home Monday and drop us off at the doctors at Duke Tuesday morning. He'll work half a day (since that's how long we'll be at the doctor!), and pick us up when we are done. He'll work from home the rest of the day. I'm not sure about the rest of the week. I might be on my own!! I'm kind-of looking forward to it though. Me and my girls:-)
I'll try to do better posting. I also have tons of pictures that need to go up. I know I said I would do it a few says ago, but hey, I have two babies! Gimmie a break:-)
Monday, September 24, 2007
pictures soon
I know we are behind on pictures. I've been labeling the 300 pictures it seems we took between rooming in and Natalie coming home and that takes a while.
I can't wait to post Nat's coming home pics, so look for them soon!
I posted one here just as a taste:-)
5 days out and doing great...
Natalie has now been home 5 days and everything is going quite well. It is so wonderful having her home. She really is a very good baby. She sleeps well and is only rarely fussy. We have established a good schedule that seems to work for us. I stay up and do the 11pm and 2am feed. I'm a night owl so I'm up anyway. Ben goes to bed between 9 and 10pm and sleeps until 4:30ish. He then does the 5am and 8am feeding. When he goes back to work, he will feed her, put her back to sleep and go to work. If she stays asleep for a while, I can potentially sleep from 2:45ish to 10ish.
Speaking of eating - since I know everyone is dying to know...
It's so hard being right all the time:-) Natalie has done amazingly well - just like I knew she would. She has taken several full bottles and lots of 40ml bottles. She is taking anywhere from half to two-third of her total feeds through her bottle. I am also starting to give her meds orally and avoid the tube as much as possible. For some reason, I have better luck with her than Ben. He seems to be doing the same thing so I'm not sure why. She is doing so well and we are so proud of her.
Now - on the Abby. I was very distressed Sunday when I talked to the nurse practitioner covering Abby on the weekend. I could tell she was another of those not thrilled with the girls going home on gavage. She also made it sound like Abby would be there until she learned to feed. I was pretty adamant that we were not interested in having that happen. I told her I wanted to meet with the doctors the next day for a pow-wow.
On the bright side, she revealed that all the tests so far have been fine. The ENT saw her Friday and everything looked fine with her throat and vocal cords. The gastro emptying test looked good too. In order words, her stomach is emptying well. The swallow test from last week did show some aspiration into her esophagus as she swallows, but there is nothing they can do for it. She just has to outgrow it. The only thing left is a MRI to reveal any possible neurological damage - which is rather unlikely.
So, one may ask - what's next. If it's not broken and they can't fix it, what's the problem? Personally, I think being in the hospital too long is the problem. I spoke with Dr. Malcolm today by phone and was quite pleased. He is the reflux specialist doctor that Dr. Izatt at DRH kept consulting. We will see him in two weeks with Natalie (and with Abby) so it was good to finally speak with him. I thought I was going to have to get tough like I finally had to do with the girls coming home in the first place, but Dr. Malcolm was wonderful. He had actually been one in favor of them going home with ng tubes and follow-up. He more or less said that if the MRI looked good, she should be able to come home. Although it didn't seem necessary, it was great to report how well Natalie to show that the home system is working.
Bottom line: Natalie is doing great and I really think Abby will be home by the weekend. We just have to hold on a few more days for Abby.
Speaking of eating - since I know everyone is dying to know...
It's so hard being right all the time:-) Natalie has done amazingly well - just like I knew she would. She has taken several full bottles and lots of 40ml bottles. She is taking anywhere from half to two-third of her total feeds through her bottle. I am also starting to give her meds orally and avoid the tube as much as possible. For some reason, I have better luck with her than Ben. He seems to be doing the same thing so I'm not sure why. She is doing so well and we are so proud of her.
Now - on the Abby. I was very distressed Sunday when I talked to the nurse practitioner covering Abby on the weekend. I could tell she was another of those not thrilled with the girls going home on gavage. She also made it sound like Abby would be there until she learned to feed. I was pretty adamant that we were not interested in having that happen. I told her I wanted to meet with the doctors the next day for a pow-wow.
On the bright side, she revealed that all the tests so far have been fine. The ENT saw her Friday and everything looked fine with her throat and vocal cords. The gastro emptying test looked good too. In order words, her stomach is emptying well. The swallow test from last week did show some aspiration into her esophagus as she swallows, but there is nothing they can do for it. She just has to outgrow it. The only thing left is a MRI to reveal any possible neurological damage - which is rather unlikely.
So, one may ask - what's next. If it's not broken and they can't fix it, what's the problem? Personally, I think being in the hospital too long is the problem. I spoke with Dr. Malcolm today by phone and was quite pleased. He is the reflux specialist doctor that Dr. Izatt at DRH kept consulting. We will see him in two weeks with Natalie (and with Abby) so it was good to finally speak with him. I thought I was going to have to get tough like I finally had to do with the girls coming home in the first place, but Dr. Malcolm was wonderful. He had actually been one in favor of them going home with ng tubes and follow-up. He more or less said that if the MRI looked good, she should be able to come home. Although it didn't seem necessary, it was great to report how well Natalie to show that the home system is working.
Bottom line: Natalie is doing great and I really think Abby will be home by the weekend. We just have to hold on a few more days for Abby.
Thursday, September 20, 2007
Abby News
Yesterday we received the news that we wouldn't be able to bring Abby home with us today. We weren't too upset since the doctor said it would be Friday or Saturday. Today, as we met with the doctor (a different one on call today), she indicated it could be another week for Abby.
They want to send Abby back to Duke (which is perfectly fine with us). They want to do a few more tests:
* MRI to look for any neurological issues that would cause her not to be able to feed - this is really pretty unlikely. It seems to me that if it were neurological, then she would be consistently unable to eat instead of sometimes do really well and sometimes not. But, there's no harm in looking.
*Stomach emptying test - watching to see how the stomach empties when she eats. The theory is that it empties slowly thus making her feel full and deciding to stop eating. I personally think this is the most likely problem.
* ENT assessment to check her vocal cords. Apparently, if they aren't moving correctly it can cause problems. This could be a possibility.
Additionally, at Duke, they will have one speech therapist to work with her several times a day. It would be more intensive and probably help her to have a consistent person doing the feeds.
It was just awful leaving Abby there today. Especially now since we don't know when she will be home. It was easy to tell that today's doctor really didn't think much of us taking Natalie home either. She seemed really convinced that we couldn't handle it. Frankly, one baby is no big deal. I think she thinks the pump thing is really complicated and hard, but it's not. It's really not much harder than having to prepare a bottle to feed her every 3 hours. I made out charts and colored coded all her meds so now it's about just following the schedule and doing a little prep work every morning for the whole day.
I guess we'll see the doctors again tomorrow when we visit Abby. Maybe then we will know more about when she might move (as always it's about finding a bed) and what the time table is. Till then, we'll just enjoy Natalie and look forward to Abby's homecoming as well.
They want to send Abby back to Duke (which is perfectly fine with us). They want to do a few more tests:
* MRI to look for any neurological issues that would cause her not to be able to feed - this is really pretty unlikely. It seems to me that if it were neurological, then she would be consistently unable to eat instead of sometimes do really well and sometimes not. But, there's no harm in looking.
*Stomach emptying test - watching to see how the stomach empties when she eats. The theory is that it empties slowly thus making her feel full and deciding to stop eating. I personally think this is the most likely problem.
* ENT assessment to check her vocal cords. Apparently, if they aren't moving correctly it can cause problems. This could be a possibility.
Additionally, at Duke, they will have one speech therapist to work with her several times a day. It would be more intensive and probably help her to have a consistent person doing the feeds.
It was just awful leaving Abby there today. Especially now since we don't know when she will be home. It was easy to tell that today's doctor really didn't think much of us taking Natalie home either. She seemed really convinced that we couldn't handle it. Frankly, one baby is no big deal. I think she thinks the pump thing is really complicated and hard, but it's not. It's really not much harder than having to prepare a bottle to feed her every 3 hours. I made out charts and colored coded all her meds so now it's about just following the schedule and doing a little prep work every morning for the whole day.
I guess we'll see the doctors again tomorrow when we visit Abby. Maybe then we will know more about when she might move (as always it's about finding a bed) and what the time table is. Till then, we'll just enjoy Natalie and look forward to Abby's homecoming as well.
Wednesday, September 19, 2007
And Baby Makes Three...
We have a baby. After 128 days, we arrived with little Natalie this afternoon about 5pm. Grandpa and Ya-Yai were waiting for us. Poppy and Nanny had been at the hospital with us all day and were following behind. Nana arrived about an hour later. Jeff and Reagan also arrived later in the evening. It was wonderful having everyone there. We had all the grandparents, except my mema, who is still at home recovering from her fall and broken tail bone.
Everything went really well this evening. We both have so much confidence taking care of her - especially after rooming-in at the hospital. We had to feed her at 6, soon after we were home. After that, Natalie was able to entertain everyone in the living room being held and hanging out in her bouncy chair. Mommy was actually in the office most of the evening making charts and fixing tags for medicine. Mommy is in prime chart making mode. Sometimes a little OCD comes in handy!!!
Everyone but my mom left about 8:30. Poor Ben went to bed - he was exhausted. I have the first night shift. It works for me since I'm a night owl any way, and frankly, too excited to sleep. My mom held Natalie while her milk went in and I pumped. She left for a nearby hotel shortly thereafter. I settled in to the rocker to hold and rock my little girl. I am a Mommy. I am a Mommy. No matter how much I say it - it seems unreal. Sometimes I think I'm just babysitting. I've decided my mantra as a parents (at least one of them), is to live in and enjoy the moment. A cross stitch mural hung on the wall in the kitchen of our many homes when I was a child. I memorized it long ago (and thought I was quite clever, by the way:-)) It read:
"Cleaning and Scrubbing can wait til tomorrow
for babies grow up
we've learned to our sorrow
So quiet down cobwebs
Dust go to sleep
I'm rocking my baby
and babies don't keep"
Even as they have been in the hospital, I've reminded myself of this little poem. Sometimes, I'd look around and think of all the things I needed to do and thought I should do them instead of go to the hospital to see the girls. Then I'd remember - "cleaning and scrubbing can wait til tomorrow - for babies grow up we've learned to our sorrow". Off to the hospital I would go.
Tonight, I thought of all things I needed to do: all the stuff from the hospital to put away; bottles to prepare; medicines to prepare. Then I remembered - "babies grow up we've learned to our sorrow." So, I settled into the rocking chair, turned on the lullaby CD, and rocked my baby - 'cause babies don't keep.
Everything went really well this evening. We both have so much confidence taking care of her - especially after rooming-in at the hospital. We had to feed her at 6, soon after we were home. After that, Natalie was able to entertain everyone in the living room being held and hanging out in her bouncy chair. Mommy was actually in the office most of the evening making charts and fixing tags for medicine. Mommy is in prime chart making mode. Sometimes a little OCD comes in handy!!!
Everyone but my mom left about 8:30. Poor Ben went to bed - he was exhausted. I have the first night shift. It works for me since I'm a night owl any way, and frankly, too excited to sleep. My mom held Natalie while her milk went in and I pumped. She left for a nearby hotel shortly thereafter. I settled in to the rocker to hold and rock my little girl. I am a Mommy. I am a Mommy. No matter how much I say it - it seems unreal. Sometimes I think I'm just babysitting. I've decided my mantra as a parents (at least one of them), is to live in and enjoy the moment. A cross stitch mural hung on the wall in the kitchen of our many homes when I was a child. I memorized it long ago (and thought I was quite clever, by the way:-)) It read:
"Cleaning and Scrubbing can wait til tomorrow
for babies grow up
we've learned to our sorrow
So quiet down cobwebs
Dust go to sleep
I'm rocking my baby
and babies don't keep"
Even as they have been in the hospital, I've reminded myself of this little poem. Sometimes, I'd look around and think of all the things I needed to do and thought I should do them instead of go to the hospital to see the girls. Then I'd remember - "cleaning and scrubbing can wait til tomorrow - for babies grow up we've learned to our sorrow". Off to the hospital I would go.
Tonight, I thought of all things I needed to do: all the stuff from the hospital to put away; bottles to prepare; medicines to prepare. Then I remembered - "babies grow up we've learned to our sorrow." So, I settled into the rocking chair, turned on the lullaby CD, and rocked my baby - 'cause babies don't keep.
Tuesday, September 18, 2007
Tuesday - Rooming In - 10pm
So - 48 hours and counting. Mommy has been here forever. I has a little break this evening for about 3 hours. I went with my mom to dinner, to Walmart quickly and home to grab a few things. So that means Daddy took care of the girls all by himself from about 6:30-9:30PM. HE DID GREAT!!! Now he's superdaddy!
We added Abby to the room last night. The monitor people FINALLY showed up about 9:30 to show us how to use them. We also received our milk pumping system yesterday afternoon. It's pretty easy to use. We'll have our own hospital at home!
The girls are so good. They aren't crying babies at all. They get a little fussy and uncomfortable at times, but sleep quite well. We have to wake them up every 3 hours to eat. They didn't wake me up at all last night, so I actually got some sleep. By some, I mean between 12 and 12pm, I had about 6 hours of sleep. Not too bad. Ben will be here tonight so maybe by splitting the work we will get more sleep. Or maybe since someone has to sleep in the recliner chair - no one will get any sleep!
We had a little bad news today. Because of a brady and a lips-turning-blue episode, they have decided to keep Abby a few more days. We will still get take Natalie home tomorrow (Wednesday). We are a little sad to leave Abby at the hospital. We had picked out the cutest coordinating outfits for them to wear home. *sigh* But, it will only be a few more days. She'll probably come home Friday or Saturday. It will also give us a chance to settle into a routine with Natalie and then plug Abby into it when she comes home.
We've had moderate success giving bottles today. I just don't understand why they won't eat. Honestly, neither do the doctors. I really hope they will get it once they come home.
When I dropped by the house this evening, I went into their room. I can really imagine our little girls lying in their crib. Everything is ready for them. We are so excited to have finally arrived at this moment.
Tomorrow will likely be an impatient waiting game. It will be at least 2ish before we leave. Of course, it may take that long to pack up all the stuff in our room!!
Now for the night shift...nite-nite
We added Abby to the room last night. The monitor people FINALLY showed up about 9:30 to show us how to use them. We also received our milk pumping system yesterday afternoon. It's pretty easy to use. We'll have our own hospital at home!
The girls are so good. They aren't crying babies at all. They get a little fussy and uncomfortable at times, but sleep quite well. We have to wake them up every 3 hours to eat. They didn't wake me up at all last night, so I actually got some sleep. By some, I mean between 12 and 12pm, I had about 6 hours of sleep. Not too bad. Ben will be here tonight so maybe by splitting the work we will get more sleep. Or maybe since someone has to sleep in the recliner chair - no one will get any sleep!
We had a little bad news today. Because of a brady and a lips-turning-blue episode, they have decided to keep Abby a few more days. We will still get take Natalie home tomorrow (Wednesday). We are a little sad to leave Abby at the hospital. We had picked out the cutest coordinating outfits for them to wear home. *sigh* But, it will only be a few more days. She'll probably come home Friday or Saturday. It will also give us a chance to settle into a routine with Natalie and then plug Abby into it when she comes home.
We've had moderate success giving bottles today. I just don't understand why they won't eat. Honestly, neither do the doctors. I really hope they will get it once they come home.
When I dropped by the house this evening, I went into their room. I can really imagine our little girls lying in their crib. Everything is ready for them. We are so excited to have finally arrived at this moment.
Tomorrow will likely be an impatient waiting game. It will be at least 2ish before we leave. Of course, it may take that long to pack up all the stuff in our room!!
Now for the night shift...nite-nite
Monday, September 17, 2007
Start at the bottom and read up...
The problem with the way these post is that they appear last one first. So, if you are reading this before the last post - you are out of order. I'll be posting updates from the hospital so to follow along scroll down and start at Rooming In - Day one.
Okay - now - Rooming In - Monday - 2:30pm
Well, I finally got a baby! Natalie arrived in the room about 1:15am. We had a very good night and mommy even got some sleep. I actually feel pretty good. It's been rather uneventful - a few feeds - a few poppy diapers. Both girls went down for a Swallow test to see where and how the milk is going when they suck it in. Both have what they call "aspiration". Basically, the bronchial tube (leads to lungs) and the esophagus (leads to stomach) run side by side. We know this when our food "goes down the wrong way". We choke and sputter. The bronchial tube has some kind of little valve that stops the milk from going through to the lungs. Sometimes the milk/food can get through. Abby is having that happen a little. Both are showing that the milk is starting down the wrong tube, then jumping back up and down the right tube. To prevent this, we are thickening the milk a little more.
They tired for a third time cath Natalie to do the VCUG. Tried and failed - again. So amoxicilian for Natalie for a while.
We have a little bad news. It turns out we can't go home until Wednesday. We'd had a significant monitor issue. I don't know who to be madder at - the moronic company that can't do anything right, or our insurance company who requires we use them. Both, I guess. So, because the supply guy simply dropped off the monitors with no instruction, we can't hook the girls up to them. Until they come to teach us, which they were supposed to do almost 3 hours ago, we can't have both girls in the room. The doctor wants us to have both girls for two full nights. Alas, we go home Wednesday. I'm actually okay with it really. At least I'm here with them and taking care of them. It's actually rather cozy. I have a bed, comfy chair, and a rocking chair. There's a half bath with a sink that is finally fixed - after we had to leave the room because of the strong smells of the stuff they were using to clean it. It finally took a machine snakey thing. There's a shower down the hall. I also have a tv, internet, and now a cooler of ice with water. They bring me food and take the dishes away too. I could live here forever!!
Okay - now - Rooming In - Monday - 2:30pm
Well, I finally got a baby! Natalie arrived in the room about 1:15am. We had a very good night and mommy even got some sleep. I actually feel pretty good. It's been rather uneventful - a few feeds - a few poppy diapers. Both girls went down for a Swallow test to see where and how the milk is going when they suck it in. Both have what they call "aspiration". Basically, the bronchial tube (leads to lungs) and the esophagus (leads to stomach) run side by side. We know this when our food "goes down the wrong way". We choke and sputter. The bronchial tube has some kind of little valve that stops the milk from going through to the lungs. Sometimes the milk/food can get through. Abby is having that happen a little. Both are showing that the milk is starting down the wrong tube, then jumping back up and down the right tube. To prevent this, we are thickening the milk a little more.
They tired for a third time cath Natalie to do the VCUG. Tried and failed - again. So amoxicilian for Natalie for a while.
We have a little bad news. It turns out we can't go home until Wednesday. We'd had a significant monitor issue. I don't know who to be madder at - the moronic company that can't do anything right, or our insurance company who requires we use them. Both, I guess. So, because the supply guy simply dropped off the monitors with no instruction, we can't hook the girls up to them. Until they come to teach us, which they were supposed to do almost 3 hours ago, we can't have both girls in the room. The doctor wants us to have both girls for two full nights. Alas, we go home Wednesday. I'm actually okay with it really. At least I'm here with them and taking care of them. It's actually rather cozy. I have a bed, comfy chair, and a rocking chair. There's a half bath with a sink that is finally fixed - after we had to leave the room because of the strong smells of the stuff they were using to clean it. It finally took a machine snakey thing. There's a shower down the hall. I also have a tv, internet, and now a cooler of ice with water. They bring me food and take the dishes away too. I could live here forever!!
Sunday, September 16, 2007
Night One Rooming-In - 11pm
So - here I am...in a comfy hospital room with a bed that inflates and deflates of it's own accord and a sink that is stopped up. The bed has something to do with adjusting to pressure points and preventing bed sores. The only way to prevent it to unplug the bed. The engineer man is currently in my little bathroom trying to unclog a very stubborn sink.
Ben and I arrived around 5:30pm. We were very excited to take possession (at least partially) of our girls and start being parents. That was 5 hours ago. So far - no babies. I'm not quite sure why. They had to eat at 6pm so we feed them their bottles. Natalie did quite well taking all but 2ml. Abby took 29ml. So after the feeds was the change of shift. The nurse who took over wanted to asses them first of course. But before that could happen, she was changing another baby who projectile pooped on EVERYTHING - blankets, bed and wall. Yes, wall. So, she spent a while cleaning that up. By that time it was nearly time to eat again. I'm not sure to where the 3 hours disappeared, but away they went. The girls had some residuals (leftover milk in tummy) so they had to wait a little longer to eat. Nat was still being feed at 10:15. So, the nurse decided she would check their vitals a little earlier than the 12am normal time and whisk her down then. So, maybe by 12am, I might have a baby - who is supposed to eat again then.
(The plumber guy just left - even after two bottle of extra- strength something that turns the whole pipe hot to the touch with its acid AND actual plunging - he can't fix the sink. So - sink full of horrible acid stuff and I guess I'll have to brush my teeth in the toilet.)
Speaking of babies - I'll actually only have Natalie tonight. There's only one monitor set up in this room. This actually confuses me a great deal. I mean, don't they ever have other twins?? It seems like it's taken a great deal of discussion to figure out how to have two babies in this room. It just seems strange to me that we are the first people ever to do this. Anyway - one monitor - one baby. Tomorrow they are hoping to get a portable monitor for Abby. The home health agency did deliver our monitors and I brought them. Unfortunately, the guy didn't show us how to use them and no one here knows. They are also supposed to arrive tomorrow to show us how they work.
All in all the evening is off to a slow start. Poor Ben actually finally went home. He has to work tomorrow and there's only one bed anyway. And since we didn't have a baby to practice anything on... He'll be by tomorrow and maybe stay tomorrow night with me. Or maybe he will sleep at home to be well rested to pull the first overnight shift at home.
It's nearly 11:30pm - the appointed time for me to return to the nursery and hopefully pick up my child. I'll keep you posted...
Ben and I arrived around 5:30pm. We were very excited to take possession (at least partially) of our girls and start being parents. That was 5 hours ago. So far - no babies. I'm not quite sure why. They had to eat at 6pm so we feed them their bottles. Natalie did quite well taking all but 2ml. Abby took 29ml. So after the feeds was the change of shift. The nurse who took over wanted to asses them first of course. But before that could happen, she was changing another baby who projectile pooped on EVERYTHING - blankets, bed and wall. Yes, wall. So, she spent a while cleaning that up. By that time it was nearly time to eat again. I'm not sure to where the 3 hours disappeared, but away they went. The girls had some residuals (leftover milk in tummy) so they had to wait a little longer to eat. Nat was still being feed at 10:15. So, the nurse decided she would check their vitals a little earlier than the 12am normal time and whisk her down then. So, maybe by 12am, I might have a baby - who is supposed to eat again then.
(The plumber guy just left - even after two bottle of extra- strength something that turns the whole pipe hot to the touch with its acid AND actual plunging - he can't fix the sink. So - sink full of horrible acid stuff and I guess I'll have to brush my teeth in the toilet.)
Speaking of babies - I'll actually only have Natalie tonight. There's only one monitor set up in this room. This actually confuses me a great deal. I mean, don't they ever have other twins?? It seems like it's taken a great deal of discussion to figure out how to have two babies in this room. It just seems strange to me that we are the first people ever to do this. Anyway - one monitor - one baby. Tomorrow they are hoping to get a portable monitor for Abby. The home health agency did deliver our monitors and I brought them. Unfortunately, the guy didn't show us how to use them and no one here knows. They are also supposed to arrive tomorrow to show us how they work.
All in all the evening is off to a slow start. Poor Ben actually finally went home. He has to work tomorrow and there's only one bed anyway. And since we didn't have a baby to practice anything on... He'll be by tomorrow and maybe stay tomorrow night with me. Or maybe he will sleep at home to be well rested to pull the first overnight shift at home.
It's nearly 11:30pm - the appointed time for me to return to the nursery and hopefully pick up my child. I'll keep you posted...
4 months old!
Wow - can you believe it? The girls were four months old yesterday (Saturday). They've been in the NICU or Special Care for 123 days. They weight 6lb 3.8oz and 7lb 6.1oz. They've really come a long way.
Also yesterday, during a visit with Grandpa and Ya-Yai, they both showed off by doing VERY well with their bottles. Natalie took all but 6ml of her feed. Abby took a while to get going, but finally took 51ml of her 65ml. They had actually stalled out again, so this was a nice surprise.
We've been taking care of all sorts of little details before rooming-in begins and the girls come home. Cleaning, sorting, final nursery prep, washing clothes, bottles, and everything else. My mom arrived today and is helping us - thanks mom! She's so awesome at motivating and cleaning. I've also been cleaning up the office (well, I'm IN the office so that sort-of counts:-) and checking on the bills for the next few weeks since I figure I'll be otherwise occupied. I figure any kind of cleaning/organizing/projects that aren't done by this afternoon aren't likely to happen.
About 5ish this afternoon (after the Panthers game) we will head to the hospital to begin the rooming-in process. I am so excited. I have already been shown how to place the ng tube (although I haven't actually done it yet), check for placement, and push their meds. We'll probably switch to oral meds when we go home. We have our own stethoscopes which is very cool. I've always wanted one. The monitors have arrived and we will take them to the hospital with us. The milk pumps, which we hopefully will not need much, will arrive tomorrow.
It's such a strange feeing to think that we will finally have babies in two more days. It seems very unreal. We are excited and nervous at the same time. We are also a little sad in some ways. It's been Johelen and Ben for 8 years, and now that era is over. We were very aware of our last Friday night alone together and our last dinner out alone for a while on Saturday. We have loved so much being together and being wifee and husbandy. It's a little sad for us that it's coming to and end in a way. We know it's not completely over, but it will be different. It's not to say we aren't thrilled about our new roles of Mommy and Daddy, but we never want to forget who we were and what it means for us to be together and happy. We have had an amazing marriage so far and been able to focus only on each other. Our Promise to each other is not to forget the other as we shift our focus to Natalie and Abigail.
I may have a computer in the hospital so I can update. Otherwise, I will check in Tuesday evening with our first report post-hospital.
Also yesterday, during a visit with Grandpa and Ya-Yai, they both showed off by doing VERY well with their bottles. Natalie took all but 6ml of her feed. Abby took a while to get going, but finally took 51ml of her 65ml. They had actually stalled out again, so this was a nice surprise.
We've been taking care of all sorts of little details before rooming-in begins and the girls come home. Cleaning, sorting, final nursery prep, washing clothes, bottles, and everything else. My mom arrived today and is helping us - thanks mom! She's so awesome at motivating and cleaning. I've also been cleaning up the office (well, I'm IN the office so that sort-of counts:-) and checking on the bills for the next few weeks since I figure I'll be otherwise occupied. I figure any kind of cleaning/organizing/projects that aren't done by this afternoon aren't likely to happen.
About 5ish this afternoon (after the Panthers game) we will head to the hospital to begin the rooming-in process. I am so excited. I have already been shown how to place the ng tube (although I haven't actually done it yet), check for placement, and push their meds. We'll probably switch to oral meds when we go home. We have our own stethoscopes which is very cool. I've always wanted one. The monitors have arrived and we will take them to the hospital with us. The milk pumps, which we hopefully will not need much, will arrive tomorrow.
It's such a strange feeing to think that we will finally have babies in two more days. It seems very unreal. We are excited and nervous at the same time. We are also a little sad in some ways. It's been Johelen and Ben for 8 years, and now that era is over. We were very aware of our last Friday night alone together and our last dinner out alone for a while on Saturday. We have loved so much being together and being wifee and husbandy. It's a little sad for us that it's coming to and end in a way. We know it's not completely over, but it will be different. It's not to say we aren't thrilled about our new roles of Mommy and Daddy, but we never want to forget who we were and what it means for us to be together and happy. We have had an amazing marriage so far and been able to focus only on each other. Our Promise to each other is not to forget the other as we shift our focus to Natalie and Abigail.
I may have a computer in the hospital so I can update. Otherwise, I will check in Tuesday evening with our first report post-hospital.
Thursday, September 13, 2007
Showers of Blessing
I wanted to take a moment to thank all the people who have been so generous in showering the girls with so many beautiful gifts. We have actually been blessed to have 3 showers.
The first shower, back in June, was at the beach with my family was not only a surprise but great fun. If you need any ideas for shower games in the future (that are cool and not stupid), give me a call. My cousin, Amye, had the best ideas. Amye also brought the most beautiful cake I'd ever seen. I've save the top for the girls first birthday cake. It was so much fun to celebrate with family, and we were very touched.
The second party was hosted a few weeks ago by the Ladies Tuesday morning Bible Study at our church, HillSong. I had been babysitting for the kids of the group each Tuesday morning since the fall. These godly women were instrumental in Ben and I deciding to return to HillSong, the church I found when I first moved to Chapel Hill and the church in which we were married. After seeing these women every week and experiencing their love and friendship, we were reminded of the incredible people we loved at HillSong and decided to return. These ladies have been praying for the girls since the beginning. Several of them visited me while in the hospital after their birth and have been to visit the girls. Their kindness has been inspirational, and we are so grateful.
Finally, this past Sunday, my father's church, Leaksville UCC, hosted a beautiful gathering in honor of the girls and Grandparents Day. Everyone contributed to the delicious potluck lunch and it seemed, to the piles and piles of gifts. It was amazing. In a way, I'm so glad the girls weren't home yet so I could go and experience the kindness and thoughtfulness of so many. It was humbling. From the banners and balloons to the adorable "cake" made of diapers, receiving blankets and topped with a stuffed lamb, the afternoon was wonderful. It was a joy to be around people who have treated my dad and Peggy so well and who have welcomed me into their church as if I were one of their own. Thank you so much for opening your hearts to us.
In addition to the shower gifts, we have received presents from friends and family and even people we've never met. One of Grandpa's colleagues made beautiful blankets for the girls. Poppy's colleagues also sent a gift of money. People have been so kind and generous, and it has all been so appreciated. As the girls grow, we will tell them of all the people who prayed for them and treated them with such kindness and thoughtfulness. With grateful hearts, we thank you all.
The first shower, back in June, was at the beach with my family was not only a surprise but great fun. If you need any ideas for shower games in the future (that are cool and not stupid), give me a call. My cousin, Amye, had the best ideas. Amye also brought the most beautiful cake I'd ever seen. I've save the top for the girls first birthday cake. It was so much fun to celebrate with family, and we were very touched.
The second party was hosted a few weeks ago by the Ladies Tuesday morning Bible Study at our church, HillSong. I had been babysitting for the kids of the group each Tuesday morning since the fall. These godly women were instrumental in Ben and I deciding to return to HillSong, the church I found when I first moved to Chapel Hill and the church in which we were married. After seeing these women every week and experiencing their love and friendship, we were reminded of the incredible people we loved at HillSong and decided to return. These ladies have been praying for the girls since the beginning. Several of them visited me while in the hospital after their birth and have been to visit the girls. Their kindness has been inspirational, and we are so grateful.
Finally, this past Sunday, my father's church, Leaksville UCC, hosted a beautiful gathering in honor of the girls and Grandparents Day. Everyone contributed to the delicious potluck lunch and it seemed, to the piles and piles of gifts. It was amazing. In a way, I'm so glad the girls weren't home yet so I could go and experience the kindness and thoughtfulness of so many. It was humbling. From the banners and balloons to the adorable "cake" made of diapers, receiving blankets and topped with a stuffed lamb, the afternoon was wonderful. It was a joy to be around people who have treated my dad and Peggy so well and who have welcomed me into their church as if I were one of their own. Thank you so much for opening your hearts to us.
In addition to the shower gifts, we have received presents from friends and family and even people we've never met. One of Grandpa's colleagues made beautiful blankets for the girls. Poppy's colleagues also sent a gift of money. People have been so kind and generous, and it has all been so appreciated. As the girls grow, we will tell them of all the people who prayed for them and treated them with such kindness and thoughtfulness. With grateful hearts, we thank you all.
The Final Countdown
The news continues to be that the girls are homeward bound. The latest word is Tuesday. We would start the rooming-in Sunday evening and go home sometime Tuesday - hopefully in the morning.
Just a quick Mommy and Daddy update:
Ben's 33rd birthday was Saturday and to celebrate and in honor of the girls, we attended a March of Dimes walk/run. We found out about it through Aunt Reagan, athlete extrordinarie and runner of marathons and triathlons, who had signed up to run the 5K in honor of the girls. After her main event (where she placed 2nd in her age group), Reagan, Uncle Jeff, Ben and I walked the 1 mile. In case you didn't know, the March of Dimes is responsible for a great deal of funding and research for preemies. It seemed like the right thing to do.
Saturday evening, Mommy left for Luray, VA to my dad's place. His church (he's a minister, FYI) was having a shower for the girls on Sunday, which happened to coincide with Grandparents Day. A tangent here, if you please: as much as Hallmark, etc. completely commercializes every holiday, somehow Grandparents Day has been completely overlooked. If the shower hadn't been on that day, I would have completely missed it. I actually feel quite bad about it since it was everyone's first one. I promise to be more on the ball from now on. Grandparents: you can look forward to cheesy art work stamped with little hands and feet, Popsicle stick napkin holders and an array of mugs, calendars, mouse pads, and t-shirts all plastered with grinning baby faces. End of Tangent...
After the shower Sunday, I headed to my mom's to visit my grandmother in the hospital. She fell about two weeks ago and broke her tailbone, which if you've ever injured it, you know it is extremely painful. I figured it would be my last chance for a while. It was a great visit and Mema will be home this week.
The days since have been spent preparing for the girls. Realizing that we STILL lacked enough storage in their room, an additional shelving unit was purchased. I'm currently in the middle of putting up all the great gifts from my recent two showers and weeding out the preemie clothes my giant children can no longer wear. There's still a long list of to-do stuff and the countdown as begun.
Just a note: I've been asked so I thought I'd mention that I intend to continue this blog and the picture site (which I know is delinquent) even after the girls come home. I enjoy it and I know now so many of you are addicted to it like your morning cup of coffee, therefore I hate to disappoint. I can't promise daily entries, after all I will have two babies, but I will update. Be aware that you may begin to find sleep-deprived rambling, incoherent babbles or blatent calls for help. For instance, if you check the blog and find: "3 am, babi no slep plse heeelp" - you may want to drop by and make sure I'm still here.
:-)
Just a quick Mommy and Daddy update:
Ben's 33rd birthday was Saturday and to celebrate and in honor of the girls, we attended a March of Dimes walk/run. We found out about it through Aunt Reagan, athlete extrordinarie and runner of marathons and triathlons, who had signed up to run the 5K in honor of the girls. After her main event (where she placed 2nd in her age group), Reagan, Uncle Jeff, Ben and I walked the 1 mile. In case you didn't know, the March of Dimes is responsible for a great deal of funding and research for preemies. It seemed like the right thing to do.
Saturday evening, Mommy left for Luray, VA to my dad's place. His church (he's a minister, FYI) was having a shower for the girls on Sunday, which happened to coincide with Grandparents Day. A tangent here, if you please: as much as Hallmark, etc. completely commercializes every holiday, somehow Grandparents Day has been completely overlooked. If the shower hadn't been on that day, I would have completely missed it. I actually feel quite bad about it since it was everyone's first one. I promise to be more on the ball from now on. Grandparents: you can look forward to cheesy art work stamped with little hands and feet, Popsicle stick napkin holders and an array of mugs, calendars, mouse pads, and t-shirts all plastered with grinning baby faces. End of Tangent...
After the shower Sunday, I headed to my mom's to visit my grandmother in the hospital. She fell about two weeks ago and broke her tailbone, which if you've ever injured it, you know it is extremely painful. I figured it would be my last chance for a while. It was a great visit and Mema will be home this week.
The days since have been spent preparing for the girls. Realizing that we STILL lacked enough storage in their room, an additional shelving unit was purchased. I'm currently in the middle of putting up all the great gifts from my recent two showers and weeding out the preemie clothes my giant children can no longer wear. There's still a long list of to-do stuff and the countdown as begun.
Just a note: I've been asked so I thought I'd mention that I intend to continue this blog and the picture site (which I know is delinquent) even after the girls come home. I enjoy it and I know now so many of you are addicted to it like your morning cup of coffee, therefore I hate to disappoint. I can't promise daily entries, after all I will have two babies, but I will update. Be aware that you may begin to find sleep-deprived rambling, incoherent babbles or blatent calls for help. For instance, if you check the blog and find: "3 am, babi no slep plse heeelp" - you may want to drop by and make sure I'm still here.
:-)
Wednesday, September 12, 2007
Breaking News
The word is in...the girls are coming home!!!! I have 7 days to clean, organize, prepare - and sleep. Natalie and Abigail are slated to come home Wednesday, Sept 19!!! They will come home a few days after their 4 month birthday and weighing a whooping 6+ pounds and 7lbs. So much for the preemie diapers and preemie clothes! We are so excited we can hardly stand it.
The girls will come home with their nasal feeding tubes (ng tubes) and heart rate monitors in case of braidys or chocking caused by movement of the tubes. A home health nurse will stop by every few days to check up on things. We will see a feeding specialist at Duke at the 2 week and 4 week mark. If everything falls into place by Friday, there is a chance they could come home Monday or Tuesday. The 48 hours prior to their homecoming, I will spend "rooming-in" at the hospital with the girls. We will have our own little room and I primarily will care for them (Ben, too, of course). We have to watch the CPR video, learn how to put in and check the ng tube, understand and know how to administer their meds and know how to work the monitors and feeding pumps. Just call me Nurse JoJo.
We are so happy that this day is finally near. I am confident that they will do better with eating at home. At least - they can't do much worse. I know many of you want to visit - and we want to see you and show off the girls. I will post rules and regulations after I talk to the doctor about precautions.
Thanks to all who have long prayed for their health and homecoming. Our NICU journey is almost at an end.
The girls will come home with their nasal feeding tubes (ng tubes) and heart rate monitors in case of braidys or chocking caused by movement of the tubes. A home health nurse will stop by every few days to check up on things. We will see a feeding specialist at Duke at the 2 week and 4 week mark. If everything falls into place by Friday, there is a chance they could come home Monday or Tuesday. The 48 hours prior to their homecoming, I will spend "rooming-in" at the hospital with the girls. We will have our own little room and I primarily will care for them (Ben, too, of course). We have to watch the CPR video, learn how to put in and check the ng tube, understand and know how to administer their meds and know how to work the monitors and feeding pumps. Just call me Nurse JoJo.
We are so happy that this day is finally near. I am confident that they will do better with eating at home. At least - they can't do much worse. I know many of you want to visit - and we want to see you and show off the girls. I will post rules and regulations after I talk to the doctor about precautions.
Thanks to all who have long prayed for their health and homecoming. Our NICU journey is almost at an end.
Thursday, September 6, 2007
A quick word before bed...
Just a quick update...
The girls continue to do better. Last night, over night, they each took a full bottle. Today they had several feeds taking between 30ml-40ml. Yeah!!! The doctor again mentioned a "plan for going home". We're still looking at the end of next week/weekend/ beginning of the following week.
Today is day two of my dairy-free life. I bought soy butter (very good) and soy milk (haven't tried yet). Yesterday, I narrowly pulled myself out of a deep depression when it dawned on me that chocolate is made of milk. I really think I could just cry.
The girls continue to do better. Last night, over night, they each took a full bottle. Today they had several feeds taking between 30ml-40ml. Yeah!!! The doctor again mentioned a "plan for going home". We're still looking at the end of next week/weekend/ beginning of the following week.
Today is day two of my dairy-free life. I bought soy butter (very good) and soy milk (haven't tried yet). Yesterday, I narrowly pulled myself out of a deep depression when it dawned on me that chocolate is made of milk. I really think I could just cry.
Wednesday, September 5, 2007
The "H" Word
The doctor actually said it...the "H" word - home! Now, don't get too excited yet - it's very cautious and not at all certain.
Tuesday morning I had a discussion with Dr. Isatt, their current doctor. She actually took care of them at Duke when they were very, very sick. She was disappointed to see they were still here. Monday when I spoke with her, I had expressed our own frustration and once again mentioned bringing them home on gavage. She wanted to consult with Dr. Malcom at Duke, a reflux specialist to see if he had any idea. Tuesday, she told me his ideas and the new plan.
The Problem:
Dr. Malcolm suggested two things that may be related: First, Since they tend to take the first 25-35ml okay, he thought maybe their stomachs are not emptying as quickly as they should and they feel full and therefore stop eating. He thinks this could be related to: Second: a possible milk-protein allergy. It's also possible the first thing isn't true, but the allergy is.
The Plan:
Starting today at their 2pm feeding they started receiving Elecare - a non-milk product formula. They will try this for one week to see if it helps. At the same time - mom is now on a dairy-free diet. No cheese, butter, milk, and I realized today - no chocolate! I will continue to pump and mark the dairy-free milk (isn't that an oxymoron!) so if the Elecare seems to make a difference, they can take dairy-free breast milk. Why, you may wonder, would I continue to breast feed if I have to give up all dairy. Well, the answer is that one can of Elecare is $35-$45. At their current consumption (which will only continue to go up), one can will last about 3 days. So, that's about $450 a month in formula. Now you understand.
The Conclusion:
Two scenarios are possible from this new plan:
One: The dairy-free regimen works, they start eating well, and could come home at the end of next week.
Two: The non-dairy regimen doesn't work, and they still may go home at the end of next week, but with a ng-tube (nose feeding tube) and a time table of one month. We will work on the feeds and check in with Dr. Malcolm for one month. If they haven't gotten it by then, we potentially move to 2a: a semi-permanent g-tube (a feeding tube inserted surgically directly into the stomach). The nose tubes have to be changed once a month (or whenever the girls pull them out which is rather frequently). There's a greater chance for infection and irritation. Obviously, we don't want to get to option 2a.
I firmly believe they will do better at home - if I can just get them there. By whatever method, there is a good chance they will come home at the end of next week - provided everything else stays okay.
Nothing is for sure, but at least we have some of the other "H" word - hope.
Tuesday morning I had a discussion with Dr. Isatt, their current doctor. She actually took care of them at Duke when they were very, very sick. She was disappointed to see they were still here. Monday when I spoke with her, I had expressed our own frustration and once again mentioned bringing them home on gavage. She wanted to consult with Dr. Malcom at Duke, a reflux specialist to see if he had any idea. Tuesday, she told me his ideas and the new plan.
The Problem:
Dr. Malcolm suggested two things that may be related: First, Since they tend to take the first 25-35ml okay, he thought maybe their stomachs are not emptying as quickly as they should and they feel full and therefore stop eating. He thinks this could be related to: Second: a possible milk-protein allergy. It's also possible the first thing isn't true, but the allergy is.
The Plan:
Starting today at their 2pm feeding they started receiving Elecare - a non-milk product formula. They will try this for one week to see if it helps. At the same time - mom is now on a dairy-free diet. No cheese, butter, milk, and I realized today - no chocolate! I will continue to pump and mark the dairy-free milk (isn't that an oxymoron!) so if the Elecare seems to make a difference, they can take dairy-free breast milk. Why, you may wonder, would I continue to breast feed if I have to give up all dairy. Well, the answer is that one can of Elecare is $35-$45. At their current consumption (which will only continue to go up), one can will last about 3 days. So, that's about $450 a month in formula. Now you understand.
The Conclusion:
Two scenarios are possible from this new plan:
One: The dairy-free regimen works, they start eating well, and could come home at the end of next week.
Two: The non-dairy regimen doesn't work, and they still may go home at the end of next week, but with a ng-tube (nose feeding tube) and a time table of one month. We will work on the feeds and check in with Dr. Malcolm for one month. If they haven't gotten it by then, we potentially move to 2a: a semi-permanent g-tube (a feeding tube inserted surgically directly into the stomach). The nose tubes have to be changed once a month (or whenever the girls pull them out which is rather frequently). There's a greater chance for infection and irritation. Obviously, we don't want to get to option 2a.
I firmly believe they will do better at home - if I can just get them there. By whatever method, there is a good chance they will come home at the end of next week - provided everything else stays okay.
Nothing is for sure, but at least we have some of the other "H" word - hope.
A Week in Review - Saturday, Sept 1 - Sept 5
I'm so sorry I get behind. I fully appreciate those of you who diligently check the site every day hoping for some new bit of information. At last - you are rewarded!
Saturday and Sunday
Mommy and Daddy took a little trip. Frankly, the stress was getting to us, and we decided a little get-away was in order. We hadn't really had a "just us" vacation since March of 2006, and we figured it would be our last for a while. We headed up I-40 and caught the Blue Ridge Parkway and traveled south towards Asheville. We stopped along the way at the Brinager Cabin (just an old, cool late-19th century home site). We saw a number of deer with fawns along the road. We ended up in Blowing Rock/Boone and tried desperately to find a place to stay. We discovered it is not a good idea to go willy-nilly to the mountains on Labor Day weekend. We finally found a room in Lenior. Sunday, we visited Grandfather Mountain. I had not been in years and Ben had never been. We continued on down the Parkway for a while until finally coming out of the clouds and heading home. The little trip did us good and we returned happy and less stressed.
On the the girls: the basics...
Abigail - feeds
Fri -
3:30am - 3ml
9am - 1ml
Sat
2am - 36ml
8am - 25ml
Sun
2am - 34ml
2pm - 30ml
8pm - 40ml (great job Nanny!)
Mon
2am - 30ml
11am - 34ml
5pm - 41ml
Tues
2am - 39ml
11am - 22ml (mommy)
Wed
2am - 51ml (mommy)
11am - 50ml (mommy)
5pm - 22ml (mommy)
weight
Fri - 2690g
Sat - 2735g
Sun - 2735g
Mon - 2745g
Tues -2825g
Wed - 2870g (6lb 5.2oz)
Natalie
feeds
Sat
5am - 23ml
11am - 37ml
Sun
2am - 4ml
11am - 42ml
5pm - 25ml
Mon
2am - 15ml
11am - 39ml
8pm - 22ml
Tues
2am - 24ml
2pm - 12ml
11pm - 42ml (mommy)
Wed
5am - 22ml (mom)
11am - 40ml (OT/ST)
8pm - 25ml (mom)
weight
Fri - 2366g
Sat 2380g
Sun 2375g
Mon 2455g
Tues 2445g (5lb 6oz)
Saturday and Sunday
Mommy and Daddy took a little trip. Frankly, the stress was getting to us, and we decided a little get-away was in order. We hadn't really had a "just us" vacation since March of 2006, and we figured it would be our last for a while. We headed up I-40 and caught the Blue Ridge Parkway and traveled south towards Asheville. We stopped along the way at the Brinager Cabin (just an old, cool late-19th century home site). We saw a number of deer with fawns along the road. We ended up in Blowing Rock/Boone and tried desperately to find a place to stay. We discovered it is not a good idea to go willy-nilly to the mountains on Labor Day weekend. We finally found a room in Lenior. Sunday, we visited Grandfather Mountain. I had not been in years and Ben had never been. We continued on down the Parkway for a while until finally coming out of the clouds and heading home. The little trip did us good and we returned happy and less stressed.
On the the girls: the basics...
Abigail - feeds
Fri -
3:30am - 3ml
9am - 1ml
Sat
2am - 36ml
8am - 25ml
Sun
2am - 34ml
2pm - 30ml
8pm - 40ml (great job Nanny!)
Mon
2am - 30ml
11am - 34ml
5pm - 41ml
Tues
2am - 39ml
11am - 22ml (mommy)
Wed
2am - 51ml (mommy)
11am - 50ml (mommy)
5pm - 22ml (mommy)
weight
Fri - 2690g
Sat - 2735g
Sun - 2735g
Mon - 2745g
Tues -2825g
Wed - 2870g (6lb 5.2oz)
Natalie
feeds
Sat
5am - 23ml
11am - 37ml
Sun
2am - 4ml
11am - 42ml
5pm - 25ml
Mon
2am - 15ml
11am - 39ml
8pm - 22ml
Tues
2am - 24ml
2pm - 12ml
11pm - 42ml (mommy)
Wed
5am - 22ml (mom)
11am - 40ml (OT/ST)
8pm - 25ml (mom)
weight
Fri - 2366g
Sat 2380g
Sun 2375g
Mon 2455g
Tues 2445g (5lb 6oz)
Friday, August 31, 2007
Good News
No, no - not the long-awaited for and hoped for going home news, but still really good news.
The girls had their eyes checked again and they had great reports. Natalie's eyes are still good, and Abby's eyes are looking much better. Both exams also show that their eyes are in Zone 3 out of 3 as far as growth. In other words, the blood vessels in the eyes are nearly finished growing.
The girls were quite cute today. I was holding Natalie while she sucked on her paci. The paci´s are hollow and both girls like it when you put her finger in it. It´s kind'of neat because you can feel them sucking. Anyway, I was holding her and had my pointy finger in her paci. She was holding on to my thumb with one hand and another finger with her other hand. It was so very cute.
Abigail and I had some nice quality time as well. We had our final Kangaroo Care video session today. She did great. At the very end though, she started grunting and moving around. Then a heard a big toot! After that, she settled right back down:-) They've actually been very gassy lately and are quite the little tooters. Daddy is very proud.
The girls had their eyes checked again and they had great reports. Natalie's eyes are still good, and Abby's eyes are looking much better. Both exams also show that their eyes are in Zone 3 out of 3 as far as growth. In other words, the blood vessels in the eyes are nearly finished growing.
The girls were quite cute today. I was holding Natalie while she sucked on her paci. The paci´s are hollow and both girls like it when you put her finger in it. It´s kind'of neat because you can feel them sucking. Anyway, I was holding her and had my pointy finger in her paci. She was holding on to my thumb with one hand and another finger with her other hand. It was so very cute.
Abigail and I had some nice quality time as well. We had our final Kangaroo Care video session today. She did great. At the very end though, she started grunting and moving around. Then a heard a big toot! After that, she settled right back down:-) They've actually been very gassy lately and are quite the little tooters. Daddy is very proud.
Thursday, August 30, 2007
Honestly - how hard is it to learn to eat?
Apparently, it's pretty hard. Since I keep talking about their feeds, I thought I'd vent a bit.
Learning to eat from a bottle is of utmost importance - obviously. It's their ticket home. So far, it's not going well. As you can tell from my little columns and lists, their success is completely random.
So, you might ask, what exactly is the problem? Hmmm. Good question. The current theory is reflux. It's pretty much like reflux in adults, and as the adults can tell you - it really sucks. The symptoms the girls have shown have mostly been in terms of their apparent discomfort. They arch their backs, move their mouths around and occasionally cry a little. In the last few days however, I've noticed them licking their lips and swallowing a lot. They've also started spitting up a little.
It actually just breaks my heart that they might be in pain. Poor little things. They are receiving reflux meds that are supposed to help. They probably are. It's one of those things where even though they still have problems you never know just how bad it would be without them.
Theory two is a combination of the reflux theory and simple prematurity. They simply may not be ready yet. Some babies just take longer. I'm told that one day the light bulb will just go off, and they'll "get it". I want to know if Babies R US sells those light bulbs. I need two.
It's so frustrating when they are getting so big and still can't come home. Our stress level is rising every day. It's getting harder and harder. We just thought they'd be home by now. We are even getting a little snippy so we've decided to take a few days together this weekend and just chill out. It will be our last chance before the girls come home.
Please continue to pray that there's a sale soon on light bulbs.
Learning to eat from a bottle is of utmost importance - obviously. It's their ticket home. So far, it's not going well. As you can tell from my little columns and lists, their success is completely random.
So, you might ask, what exactly is the problem? Hmmm. Good question. The current theory is reflux. It's pretty much like reflux in adults, and as the adults can tell you - it really sucks. The symptoms the girls have shown have mostly been in terms of their apparent discomfort. They arch their backs, move their mouths around and occasionally cry a little. In the last few days however, I've noticed them licking their lips and swallowing a lot. They've also started spitting up a little.
It actually just breaks my heart that they might be in pain. Poor little things. They are receiving reflux meds that are supposed to help. They probably are. It's one of those things where even though they still have problems you never know just how bad it would be without them.
Theory two is a combination of the reflux theory and simple prematurity. They simply may not be ready yet. Some babies just take longer. I'm told that one day the light bulb will just go off, and they'll "get it". I want to know if Babies R US sells those light bulbs. I need two.
It's so frustrating when they are getting so big and still can't come home. Our stress level is rising every day. It's getting harder and harder. We just thought they'd be home by now. We are even getting a little snippy so we've decided to take a few days together this weekend and just chill out. It will be our last chance before the girls come home.
Please continue to pray that there's a sale soon on light bulbs.
Wednesday, August 29, 2007
Abby - world traveler
Well, at least a cross-town traveler. She has made her way back to DRH AGAIN. She arrived about 7:30 Tuesday evening. Obviously, her eye exam went really well. Her eye showed improvement and no surgery was required. The doctor thinks her eye will continue to improve and be just fine. Yeah!!! Thanks God!
Since time continues to fly, I'll catch up on the week.
While Abby was in their care, Duke took care of a few housekeeping duties. Sunday evening she had a VCUG - voiding cystourethrogram. Radioactive fluid is squirted into the bladder to see where it goes. It's trying to detect if any urine is flowing backwards into the bladder. If it does, it can cause an infection. She has been on amoxicilin just in case that happened. But, the VCUG showed that the bladder was functioning normally and there was no sign of urine reflux. This is great and means she can stop the antibiotic.
Tuesday before she left, she also had an Upper GI to see if there were any physiological reasons for her eating issues. Again, everything looked good. It did show some mild reflux.
Speech and OT continued to work on her bottle feeds. I was told she took a whole bottle right after she arrived on Sunday afternoon. On Monday at 2pm, she also took another full bottle. I think that's all they tired at Duke. Today (wednesday), she had a bottle at 6am, but only took 12ml. At 2pm, she took 25ml. At 8pm she took 35ml. Her weights at Duke were 2610g on Sunday and 2630g on Monday. When they checked her back in to DRH she weighed in at 2640g - 5lbs 13.12oz. Wednesday, she weighed in at 3695 - almost 2 more ounces - 5lbs 15.06oz! She may hit 6lbs tomorrow! She's going to outgrow some of her clothes before she ever gets home! And never mind those preemie diapers I bought. She'll be in Size 1 any day now. Oh - another little first today - I clipped Abby's nails for the first time. They are the tiniest things you have ever seen. But, I manage to avoid drawing blood.
On to Natalie...
Natalie managed fine while her sister was away. OT and Speech worked with her a lot between Sunday and today.
Sun - 11am - 44ml
Mon - 12am - 13ml
9am - 20ml
6pm - 24ml
Tues 9am - 36ml
9pm - 15ml
Wed - 3am - 24ml
9am - 11ml
3pm - 9ml
9pm - 40ml
She also continues to grow.
Sun - 2165g
Mon - 2225g
Tues - 2230g
Wed - 2270g - 5lbs!!!! and .07oz. Go Natalie!!!
Monday was a big day for Natalie as she also had her nails clipped for the first time. As it was my first time, I have to say, it was one of the scariest things I've ever done. Luckily - we both survived - with all 10 fingers - and my sanity in tact.
Since time continues to fly, I'll catch up on the week.
While Abby was in their care, Duke took care of a few housekeeping duties. Sunday evening she had a VCUG - voiding cystourethrogram. Radioactive fluid is squirted into the bladder to see where it goes. It's trying to detect if any urine is flowing backwards into the bladder. If it does, it can cause an infection. She has been on amoxicilin just in case that happened. But, the VCUG showed that the bladder was functioning normally and there was no sign of urine reflux. This is great and means she can stop the antibiotic.
Tuesday before she left, she also had an Upper GI to see if there were any physiological reasons for her eating issues. Again, everything looked good. It did show some mild reflux.
Speech and OT continued to work on her bottle feeds. I was told she took a whole bottle right after she arrived on Sunday afternoon. On Monday at 2pm, she also took another full bottle. I think that's all they tired at Duke. Today (wednesday), she had a bottle at 6am, but only took 12ml. At 2pm, she took 25ml. At 8pm she took 35ml. Her weights at Duke were 2610g on Sunday and 2630g on Monday. When they checked her back in to DRH she weighed in at 2640g - 5lbs 13.12oz. Wednesday, she weighed in at 3695 - almost 2 more ounces - 5lbs 15.06oz! She may hit 6lbs tomorrow! She's going to outgrow some of her clothes before she ever gets home! And never mind those preemie diapers I bought. She'll be in Size 1 any day now. Oh - another little first today - I clipped Abby's nails for the first time. They are the tiniest things you have ever seen. But, I manage to avoid drawing blood.
On to Natalie...
Natalie managed fine while her sister was away. OT and Speech worked with her a lot between Sunday and today.
Sun - 11am - 44ml
Mon - 12am - 13ml
9am - 20ml
6pm - 24ml
Tues 9am - 36ml
9pm - 15ml
Wed - 3am - 24ml
9am - 11ml
3pm - 9ml
9pm - 40ml
She also continues to grow.
Sun - 2165g
Mon - 2225g
Tues - 2230g
Wed - 2270g - 5lbs!!!! and .07oz. Go Natalie!!!
Monday was a big day for Natalie as she also had her nails clipped for the first time. As it was my first time, I have to say, it was one of the scariest things I've ever done. Luckily - we both survived - with all 10 fingers - and my sanity in tact.
Sunday, August 26, 2007
Back at Duke
Well, as of about 2pm, Abby is back at Duke. She settled in nicely and the nurse said she seemed quite happy. Almost as soon as she arrived, they fed her by bottle and she took the whole thing. Go figure. They will check her eyes Monday morning. Oh, today while still at DRH, they put Abby in the swing for the first time. They said she seemed to like it. I hate I missed it.
Back at DRH, Natalie is doing well. She also took her full bottle at 11am. Our girls are so weird. Natalie also gained another ounce and is at 2165g - 4.12lbs. If she continues to take her bottles, maybe she can come home next week! I guess I shouldn't get my hopes up, but I hope, hope, hope.
Back at DRH, Natalie is doing well. She also took her full bottle at 11am. Our girls are so weird. Natalie also gained another ounce and is at 2165g - 4.12lbs. If she continues to take her bottles, maybe she can come home next week! I guess I shouldn't get my hopes up, but I hope, hope, hope.
Clear plastic containers, label makers, and color coded closets...
No, no, no - not that kind of organization! I promised an explanation of the oft-used term, "organization" in relation to the girls. This may be a little technical, so hang with me.
If a person says the term, "fetal position", most people can visualize what that means. We imagine a person curled up in a ball with their head to their chest, arms pulled in and legs tucked to their chest. There's a reason this position is termed in this way. As the womb shrinks to an ever-growing baby, the baby is forced to assume this curled up position. There are practical reasons for this - space being the most obvious one. However, there are also physiological reasons as well - leading to the concept of organization and sensory integration.
The skin is the body's largest organ and the largest receptor of sensory information. It feels hot, cold, soft, and firm and takes all manners of information from the world and transmitting that information to the central nervous system and then to the brain. In most babies the central nervous system is developed enough to accept and process the information it receives. If the information is too much, the baby can "curl" to protect itself. Think about what happens when you get cold. You immediately pull your arms in to your body to minimize your skin's exposure to the cold. If you are really cold, you sit and pull your legs in and drop your head to your chest, aka the fetal position. It's also a protective position for emotional pain. When we are hurting emotionally, we crawl into bed and curl up. It's our body's way of saying it can not handle any more stimuli, and it's a way of the body calming itself. And herein lies the key to "organization".
Full-term babies are better able to recognize when they receive stimuli and can pull their hands and arms in to minimize stimulation and calm themselves. Their abilities to bring their hands to their mouths and suck on their fingers are also calming and organizational behaviors. Pre-term babies especially, are not automatically geared to do this. Perhaps because their living spaces never became cramped enough and they never had to spend time in the fetus position, it simply is not instinctive. Also, since they did not have time to finish developing their nervous systems, they simply don't know how to respond to excess stimuli. The result is disorganization.
There are many cues the babies give to indicate their disorganization and stress: Flailing arms and legs; open hands (opposed to fists); straight and locked arms and legs; and scared, wide-eyed looks on their faces among others. Organized cues include clenched fists, arms drawn into center of chest, hands at mouth and bent knees. For babies who are not organized, they have to be taught and encouraged how to do it.
Teaching Natalie and Abigail how to organize themselves involves a few different methods. They are usually kept wrapped up with their hands snuggled tightly at their faces so they can suck on them. Wrapping, called swaddling, also keeps their arms and hands centered in their chest. They are also swaddled with their legs in a "flexed" position. The babies also prefer firm, deep touches to light touches - think massage versus tickling. They also prefer quieter voices to loud, sudden ones. All of this is partly to re-create the conditions of the womb - quiet, cramped, and comfy.
For those who are still reading, congratulations. You've made it through Baby Organization 101. All this is important because the inability to organize can lead to future issues, like sensory-integration problems. That's exactly what it sounds like, the inability to process or integrate all the sensory information that the body receives. It mostly occurs in the areas of touch and sound. For instance, I have a few sensory issues myself. I hate for rough things to touch me. I also hate tight things. I've been like this since I was a child. It has and continues to do considerable damage to my wardrobe. I hate most fashionable clothes since I find them too tight or made of some weird yucky fabric. I'm a loose cotton t-shirt, elastic waistband type of girl. So, we are trying to prevent such weirdness in our girls.
Well, now you know what I'm talking about when I throw around big words like "organization" and "sensory integration". If you are completely lost and actually care, give me a call:-)
If a person says the term, "fetal position", most people can visualize what that means. We imagine a person curled up in a ball with their head to their chest, arms pulled in and legs tucked to their chest. There's a reason this position is termed in this way. As the womb shrinks to an ever-growing baby, the baby is forced to assume this curled up position. There are practical reasons for this - space being the most obvious one. However, there are also physiological reasons as well - leading to the concept of organization and sensory integration.
The skin is the body's largest organ and the largest receptor of sensory information. It feels hot, cold, soft, and firm and takes all manners of information from the world and transmitting that information to the central nervous system and then to the brain. In most babies the central nervous system is developed enough to accept and process the information it receives. If the information is too much, the baby can "curl" to protect itself. Think about what happens when you get cold. You immediately pull your arms in to your body to minimize your skin's exposure to the cold. If you are really cold, you sit and pull your legs in and drop your head to your chest, aka the fetal position. It's also a protective position for emotional pain. When we are hurting emotionally, we crawl into bed and curl up. It's our body's way of saying it can not handle any more stimuli, and it's a way of the body calming itself. And herein lies the key to "organization".
Full-term babies are better able to recognize when they receive stimuli and can pull their hands and arms in to minimize stimulation and calm themselves. Their abilities to bring their hands to their mouths and suck on their fingers are also calming and organizational behaviors. Pre-term babies especially, are not automatically geared to do this. Perhaps because their living spaces never became cramped enough and they never had to spend time in the fetus position, it simply is not instinctive. Also, since they did not have time to finish developing their nervous systems, they simply don't know how to respond to excess stimuli. The result is disorganization.
There are many cues the babies give to indicate their disorganization and stress: Flailing arms and legs; open hands (opposed to fists); straight and locked arms and legs; and scared, wide-eyed looks on their faces among others. Organized cues include clenched fists, arms drawn into center of chest, hands at mouth and bent knees. For babies who are not organized, they have to be taught and encouraged how to do it.
Teaching Natalie and Abigail how to organize themselves involves a few different methods. They are usually kept wrapped up with their hands snuggled tightly at their faces so they can suck on them. Wrapping, called swaddling, also keeps their arms and hands centered in their chest. They are also swaddled with their legs in a "flexed" position. The babies also prefer firm, deep touches to light touches - think massage versus tickling. They also prefer quieter voices to loud, sudden ones. All of this is partly to re-create the conditions of the womb - quiet, cramped, and comfy.
For those who are still reading, congratulations. You've made it through Baby Organization 101. All this is important because the inability to organize can lead to future issues, like sensory-integration problems. That's exactly what it sounds like, the inability to process or integrate all the sensory information that the body receives. It mostly occurs in the areas of touch and sound. For instance, I have a few sensory issues myself. I hate for rough things to touch me. I also hate tight things. I've been like this since I was a child. It has and continues to do considerable damage to my wardrobe. I hate most fashionable clothes since I find them too tight or made of some weird yucky fabric. I'm a loose cotton t-shirt, elastic waistband type of girl. So, we are trying to prevent such weirdness in our girls.
Well, now you know what I'm talking about when I throw around big words like "organization" and "sensory integration". If you are completely lost and actually care, give me a call:-)
Saturday, August 25, 2007
On the road...again
Well, Abby's eyes were checked again on Friday. (I must say I've been very pleased with how they are keeping on top of it.) Her left eye was still fine, but her right eye showed more advancement into stage 3 ROP. So - back to Duke. This time Dr. Tang (at DRH) wants them to stay until they go home. She is also very concerned about their lack of oral feeding. She wants Natalie to go to Duke as well for her feeding issues, and since it may be two more weeks, to make life easier on us.
They've been trying various things at DRH with the feeds: breast milk with progestimil (which supposedly tastes yucky); then breast milk with Elecare (supposedly no taste). Today they are trying just breast milk trying to determine if there's something about the taste they don't like. They are also adding "simply thick", a Vaseline-like substance that thickens the milk so they don't choke so much. We are also holding off on breastfeeding this weekend in case that's causing them confusion. In any case, they are about out of ideas. Their best guess is that the girls suffer from reflux - very common in preemies. They don't spit up often, but it can still enter their throats causing burning and irritation. There is a doctor at Duke that does research in reflux and Dr. Tang think he may have some ideas. That's why she wants them to go - and stay - at Duke.
Do, they will move over Sunday or Monday morning. Probably Sunday. Hopefully they will take Natalie too. Although parking is a pain at Duke, we are looking forward to going "home". I'm looking forward to the cotton (and not nylon) short-sleeved gowns and the comfy recliner chairs for holding and breastfeeding. Ahhhh.
In other news...
Weights
Abby
Fri - 2515g
Sat - 2530g (5.9lbs)
Natalie
Fri - 2080g
Sat - 2130g (4.11lb- shortening the gap!)
Just a run down of their sporadic feeds...
Natalie
fri
2am - 8ml
11am - 6ml
8pm - 25ml
Sat
5:30am - 6ml
11am - 11ml
5pm - 30ml
Abby
fri
12am - 5ml
9am - 6ml
9pm - 21ml
sat
6:30am - 12ml
11am - 20ml
6 pm - 17ml
As you can see there's no pattern or progression. It's completely random. Hopefully Duke will have some eyes, or as Dr. Tang said, maybe they don't like Durham Hospital and will like it better at Duke.
They've been trying various things at DRH with the feeds: breast milk with progestimil (which supposedly tastes yucky); then breast milk with Elecare (supposedly no taste). Today they are trying just breast milk trying to determine if there's something about the taste they don't like. They are also adding "simply thick", a Vaseline-like substance that thickens the milk so they don't choke so much. We are also holding off on breastfeeding this weekend in case that's causing them confusion. In any case, they are about out of ideas. Their best guess is that the girls suffer from reflux - very common in preemies. They don't spit up often, but it can still enter their throats causing burning and irritation. There is a doctor at Duke that does research in reflux and Dr. Tang think he may have some ideas. That's why she wants them to go - and stay - at Duke.
Do, they will move over Sunday or Monday morning. Probably Sunday. Hopefully they will take Natalie too. Although parking is a pain at Duke, we are looking forward to going "home". I'm looking forward to the cotton (and not nylon) short-sleeved gowns and the comfy recliner chairs for holding and breastfeeding. Ahhhh.
In other news...
Weights
Abby
Fri - 2515g
Sat - 2530g (5.9lbs)
Natalie
Fri - 2080g
Sat - 2130g (4.11lb- shortening the gap!)
Just a run down of their sporadic feeds...
Natalie
fri
2am - 8ml
11am - 6ml
8pm - 25ml
Sat
5:30am - 6ml
11am - 11ml
5pm - 30ml
Abby
fri
12am - 5ml
9am - 6ml
9pm - 21ml
sat
6:30am - 12ml
11am - 20ml
6 pm - 17ml
As you can see there's no pattern or progression. It's completely random. Hopefully Duke will have some eyes, or as Dr. Tang said, maybe they don't like Durham Hospital and will like it better at Duke.
Friday, August 24, 2007
It costs HOW MUCH???
So, we received an Explanation of Benefits from our insurance company today for Abigail's charges. Anybody want to guess???
Wait for it............$377,862.06. Once again. $377,862.06. The best part is the plan liability part - $0. Total Patient Responsibility - $377,862.06. Obviously this isn't correct. Oh, and the best I can tell, that's only through July 11. Interestingly, one of the largest charges is $45,470.00 for drugs. I've been trying to talk to Abby about that crack habit.
We haven't seen all the bills from Duke yet. I'm wondering if this is even correct. I guess we'll see. All I can say, regardless of its issues, is thank God for health insurance.
Wait for it............$377,862.06. Once again. $377,862.06. The best part is the plan liability part - $0. Total Patient Responsibility - $377,862.06. Obviously this isn't correct. Oh, and the best I can tell, that's only through July 11. Interestingly, one of the largest charges is $45,470.00 for drugs. I've been trying to talk to Abby about that crack habit.
We haven't seen all the bills from Duke yet. I'm wondering if this is even correct. I guess we'll see. All I can say, regardless of its issues, is thank God for health insurance.
New Pictures
I've posted new pictures for weeks 13 and 14. I also updated the "Watch Me Grow Week by Week". That's really worth checking out. To see how they've grown and changed from birth to now is amazing. Enjoy.
Thursday, August 23, 2007
A reminder...
Please don't forget to sign your name on the posts you leave. We love reading them, but we can't tell who they are from if you don't sign your name! Thanks!
The days fly by...
Is it Thursday already?? I get so easily behind. How does that happen? Well, here's the news...
Tuesday Abigail had her eyes checked again. I was very pleased they went ahead and checked them as I had asked. Her left eye showed even more improvement. The right eye, the troubled one, was "stable". I guess that's good. They will check them again in 4-6 days.
Tuesday morning the girls did well with their feedings. Speech fed them at 11am and Natalie took her whole bottle! Abby took 40ml of her 55ml feed. Later that evening at 8 and 9pm, Poppy and Nanny took turns feeding the girls and did quite well. Natalie again took a full feed. Abby only took 22ml, but she was half asleep the whole time.
Obviously, Poppy and Nanny were visiting on Tuesday. Our dear friend, Laura, also visited on Tuesday. I was able to sneak her in by saying she was from our church, which is true. She was able to hold Natalie and it was darling.
Wednesday
Wednesday was frustrating for Mommy. I tried to breastfeed both girls and neither would have anything to do with it. I was very frustrated. I have great milk production, but the equipment to transfer it falls a bit "flat". Later that evening, Ben and I had a little talk. Ben was wonderful and very supportive. I just have to remember to stay calm and realize that they will eventually get it - when they are ready.
Wednesday evening also saw a visit from Aunt Kimmy. Ben has two bracelets, so Kimberly put one on and they never even blinked about letting her in. It's been over a month since she's seen them and they are a lot bigger now. The visit was short, but we are so glad she could see them. I know the girls were thrilled.
Today - Thursday - was a nice day. I was at the hospital from about 2 to 7:30. They moved the babies around in the room so we have the whole back corner. There's also no one on the opposite side of the room, so really we have the whole back half of the room, which is quite nice.
I tried breastfeeding Natalie at 2pm with the help of Speech and Cathy, the lactation consultant. It didn't work. I did manage to stay much more calm this time. I ended up kangarooing Natalie while Speech bottle feed Abby. They tried putting some thickening stuff in the milk to see if it helped her any. It didn't. She only took 15ml and worked hard for that. So, no more thickening stuff and better luck next time. I also took some time to kangaroo Abby. I really enjoyed just holding and enjoying my little girls.
Here are their recent weights:
Abby
Mon - 2310
Tues - 2365
Wed - 2425
Thurs - 2425 (5lb 5.53oz)
Natalie
Mon - 1899
Tues - 1968
Wed - 2040
Thurs - 2045 (4lb 8.135oz)
As a side:
You may have been wondering why my dad, step-mom, and sister were visiting in the middle of the week. Unfortunately, we had a tragedy in our family this week. My cousin, Dustin, was killed in a motorcycle accident in Burlington on Saturday night. He was only 21. They were all here for the funeral on Wednesday. It was a very sad for all of us, especially Dusty's father and brother. Unfortunately, Dustin had a tough life during his short time here. He had bi-polar disorder and had struggled with the disease most of his life. Although his passing is tragic, we have all been comforted that his suffering in this world is now over, and he is finally at peace.
Tuesday Abigail had her eyes checked again. I was very pleased they went ahead and checked them as I had asked. Her left eye showed even more improvement. The right eye, the troubled one, was "stable". I guess that's good. They will check them again in 4-6 days.
Tuesday morning the girls did well with their feedings. Speech fed them at 11am and Natalie took her whole bottle! Abby took 40ml of her 55ml feed. Later that evening at 8 and 9pm, Poppy and Nanny took turns feeding the girls and did quite well. Natalie again took a full feed. Abby only took 22ml, but she was half asleep the whole time.
Obviously, Poppy and Nanny were visiting on Tuesday. Our dear friend, Laura, also visited on Tuesday. I was able to sneak her in by saying she was from our church, which is true. She was able to hold Natalie and it was darling.
Wednesday
Wednesday was frustrating for Mommy. I tried to breastfeed both girls and neither would have anything to do with it. I was very frustrated. I have great milk production, but the equipment to transfer it falls a bit "flat". Later that evening, Ben and I had a little talk. Ben was wonderful and very supportive. I just have to remember to stay calm and realize that they will eventually get it - when they are ready.
Wednesday evening also saw a visit from Aunt Kimmy. Ben has two bracelets, so Kimberly put one on and they never even blinked about letting her in. It's been over a month since she's seen them and they are a lot bigger now. The visit was short, but we are so glad she could see them. I know the girls were thrilled.
Today - Thursday - was a nice day. I was at the hospital from about 2 to 7:30. They moved the babies around in the room so we have the whole back corner. There's also no one on the opposite side of the room, so really we have the whole back half of the room, which is quite nice.
I tried breastfeeding Natalie at 2pm with the help of Speech and Cathy, the lactation consultant. It didn't work. I did manage to stay much more calm this time. I ended up kangarooing Natalie while Speech bottle feed Abby. They tried putting some thickening stuff in the milk to see if it helped her any. It didn't. She only took 15ml and worked hard for that. So, no more thickening stuff and better luck next time. I also took some time to kangaroo Abby. I really enjoyed just holding and enjoying my little girls.
Here are their recent weights:
Abby
Mon - 2310
Tues - 2365
Wed - 2425
Thurs - 2425 (5lb 5.53oz)
Natalie
Mon - 1899
Tues - 1968
Wed - 2040
Thurs - 2045 (4lb 8.135oz)
As a side:
You may have been wondering why my dad, step-mom, and sister were visiting in the middle of the week. Unfortunately, we had a tragedy in our family this week. My cousin, Dustin, was killed in a motorcycle accident in Burlington on Saturday night. He was only 21. They were all here for the funeral on Wednesday. It was a very sad for all of us, especially Dusty's father and brother. Unfortunately, Dustin had a tough life during his short time here. He had bi-polar disorder and had struggled with the disease most of his life. Although his passing is tragic, we have all been comforted that his suffering in this world is now over, and he is finally at peace.
Monday, August 20, 2007
Mommy's OWLS - Divination - T
For all you Harry Potter fans, you know that Divination is the art of predictions. A T stands for Troll - the lowest grade you can get. A review of the predictions I made several weeks ago reveals Mommy will NOT be pursuing a NEWT in this subject. For those non-Harry Potter fans who are desperately confused, my predictions were wrong, and oh, read the books:-)
Abby
* Abby is steadily gaining weight. At this rate I think she will hit 4lbs by August 8 - in one week. THIS IS THE ONLY ONE I GOT RIGHT - SHE MADE 4 LBS SUNDAY, AUG 5.
* She is now receiving at least 3 of her 8 feedings a day by bottle and taking all or nearly all of each feeding. I think she will take all of them within the next two weeks - by August 15 - her 3 month birthday. WRONG
* With all her progress, I really feel that Abigail will make it home by her due date - August 20 (a Monday). I think she'll come home at about 4 lbs 9 oz. VERY WRONG - SHE'S NOT HOME YET, AND SHE IS ALREADY AT 5 LBS
Natalie
* Natalie is doing really well, but is still almost 11 ounces behind Abby. She had some setbacks in growing, but she seems to be taking off now. I predict that she will hit 4 lbs by August 15. NOPE - SHE HIT 4 LBS AUG 17
* Natalie is also doing well with her bottles, but again, started almost two weeks behind Abby. She is trying 3 bottles a day as well, but not eating them as completely as often as Abby. I think she will need an extra week or two and may come home around August 31. UNKNOWN - THIS HASN'T BEEN PROVEN WRONG YET, BUT IT'S NOT LOOKING GOOD
And with that - Mommy's out of the prediction business.
Abby
* Abby is steadily gaining weight. At this rate I think she will hit 4lbs by August 8 - in one week. THIS IS THE ONLY ONE I GOT RIGHT - SHE MADE 4 LBS SUNDAY, AUG 5.
* She is now receiving at least 3 of her 8 feedings a day by bottle and taking all or nearly all of each feeding. I think she will take all of them within the next two weeks - by August 15 - her 3 month birthday. WRONG
* With all her progress, I really feel that Abigail will make it home by her due date - August 20 (a Monday). I think she'll come home at about 4 lbs 9 oz. VERY WRONG - SHE'S NOT HOME YET, AND SHE IS ALREADY AT 5 LBS
Natalie
* Natalie is doing really well, but is still almost 11 ounces behind Abby. She had some setbacks in growing, but she seems to be taking off now. I predict that she will hit 4 lbs by August 15. NOPE - SHE HIT 4 LBS AUG 17
* Natalie is also doing well with her bottles, but again, started almost two weeks behind Abby. She is trying 3 bottles a day as well, but not eating them as completely as often as Abby. I think she will need an extra week or two and may come home around August 31. UNKNOWN - THIS HASN'T BEEN PROVEN WRONG YET, BUT IT'S NOT LOOKING GOOD
And with that - Mommy's out of the prediction business.
A few days in review...
I need to catch up the last few days, so here goes...
Friday - The girls has their eyes checked again for ROP. Natalie's eyes look great. They are now between Stage 1 and 2. Abby's left eye also still looks better - Stage 2. However, now her right eye is showing some Stage 3. It wasn't concerning enough to send her back to Duke, but they will check them again in 5-7 days. I actually requested today that they check them sooner rather than later. Hopefully, they will look at them on Wednesday.
I can't remember if I posted that the girls failed their cortisone tests last week. It's not a really big deal; it just means they will continue to receive hydrocortisone in very small doses.
As of today, they have switched them from Progestimil to EleCare preemie formula. They are both pre-digested, hypoallergenic, yada, yada, formulas. The EleCare is supposed to be easier on the stomach. It also tastes better. Apparently the Progestimil is icky and changes the taste of the breast milk when mixed in. The idea is that if they like the taste better, they will take more from the bottle.
They measured the girls today. Abigail is 18 inches long now. Natalie is a bit behind at 16 1/4 inches.
Here's the run down of their weights:
Abby
Wed 2150
Thurs 2120
Fri 2205
Sat 2225
Sun 2300
Mon 2310g (5 lb 1.48oz)
Natalie
Wed 1739
Thurs 1779
Fri 1829
Sat 1872
Sun 1894
Mon 1899g (4lb 2.985oz)
Friday - The girls has their eyes checked again for ROP. Natalie's eyes look great. They are now between Stage 1 and 2. Abby's left eye also still looks better - Stage 2. However, now her right eye is showing some Stage 3. It wasn't concerning enough to send her back to Duke, but they will check them again in 5-7 days. I actually requested today that they check them sooner rather than later. Hopefully, they will look at them on Wednesday.
I can't remember if I posted that the girls failed their cortisone tests last week. It's not a really big deal; it just means they will continue to receive hydrocortisone in very small doses.
As of today, they have switched them from Progestimil to EleCare preemie formula. They are both pre-digested, hypoallergenic, yada, yada, formulas. The EleCare is supposed to be easier on the stomach. It also tastes better. Apparently the Progestimil is icky and changes the taste of the breast milk when mixed in. The idea is that if they like the taste better, they will take more from the bottle.
They measured the girls today. Abigail is 18 inches long now. Natalie is a bit behind at 16 1/4 inches.
Here's the run down of their weights:
Abby
Wed 2150
Thurs 2120
Fri 2205
Sat 2225
Sun 2300
Mon 2310g (5 lb 1.48oz)
Natalie
Wed 1739
Thurs 1779
Fri 1829
Sat 1872
Sun 1894
Mon 1899g (4lb 2.985oz)
40 weeks! Their Due Date has Arrived!
Well, as of today, the girls are officially here. From hence forth, if you ask their age, you will get two answers: their "real age" (time since birth) and their "corrected age" (time since due date). For instance, today they are 3 months old or 0 days old. The corrected date is important in terms of evaluating developmental milestones. If their actual age is used, they'll appear delayed in everything, like rolling over, sitting up, etc. Using the corrected age shows more accurately if they are on schedule or having delays that may need intervention.
Also, as of today, my patience has officially expired. I have suddenly developed a desperate longing for the girls to come home - NOW. I found myself very frustrated today with their lack of progress in the eating department. I was especially jealous when the baby next to us, a 29 weeker, now only 33 weeks, was chomping down her bottle like a pro. It's very frustrating. They are doing so well in every way, and the ONLY thing holding their ability to take their feeds from bottle and/or breast. We are told that one day they'll just "get it". I think it's time.
Also, as of today, my patience has officially expired. I have suddenly developed a desperate longing for the girls to come home - NOW. I found myself very frustrated today with their lack of progress in the eating department. I was especially jealous when the baby next to us, a 29 weeker, now only 33 weeks, was chomping down her bottle like a pro. It's very frustrating. They are doing so well in every way, and the ONLY thing holding their ability to take their feeds from bottle and/or breast. We are told that one day they'll just "get it". I think it's time.
Here I come to save the day!
So Mommy has been out of town at a wedding on Friday and Saturday and then yesterday a family emergency on her side cropped up. So that explains the lack of posting.
But never fear, Daddy is here! Just a quick update before I get my second cup of coffee and start working. Last night Johelen and I bottle-fed Abby and Natalie and both did extremely well. This is the second time I've done a feeding and it's pretty cool. I also changed a couple diapers on Saturday while my Dad was here and it was pretty messy. I'm getting the hang of it though, and can tell with about 95% accuracy if they pooped or not. Natalie also farted on my hand which had me laughing for a while. Hey, I'm a guy and bathroom humor is still funny to me!
Natalie is at 4lbs 1oz.
Abby is just a smidge over 5lbs!
I'm sure once Johelen wakes up this morning, she'll update ya'll some more.
mmmmm...coffee....
Thursday, August 16, 2007
3 months old - August 15
I'm sorry for not updating more often. Life gets so busy and when things are going well, there are fewer things to report. I've been spending 4-6 hours in the afternoon at the hospital with the girls and by the time I get home the time just flies. I'll try to do better:-)
Okay - here we go.
Tuesday
Yesterday, the girls were 13 weeks old. They are just growing and growing. Abby gained nearly 2 ox in one night. She went from 2035g Monday to 2110g (4lb 10.5oz) on Tuesday! Wow! Natalie's doing pretty well yourself - she was 1702g (3lb 12oz) on Tuesday. They have had a little reflux with their feedings. I think they are going to start Natalie on Zantax to help. They haven't been doing very well with their bottle feedings, but hopefully they will get better.
Natalie also had a cortizone test to see how well she's doing without receiving the hydrocortizone. We haven't heard what the results were yet. Abby will have the test Wednesday.
Wednesday
Wednesday morning the doctor called and said Abby's hemocrit (red blood cell production) was at 21. That's pretty low. I wasn't too surprised since it had been at 24 a few days ago. So, little Abby needed a blood transfusion. They do it over two days so she'll get more on Thursday. She did great though and by the end was just as pink as could be!
Once again, neither did well with nippling in the morning. However, they each did better with breastfeeding in the afternoon. At her 5pm feeding, Natalie took 14ml. At 8pm, Abby did 24ml. She did great! They seem to do better with breastfeeding which is perfect if you ask me!
At lunch we had a visit from a case worker from the state Infant-Child Development Coordinator to explain some of the services available to the girls. She will help coordinate OT, PT, Speech and whatever else to help get the girls up to date with development. The best part is it's all free! Most of the people will come to our house to do the therapies which is wonderful. Just as a note - my mom actually used to do this job. She actually did evaluations and provided the therapies. Needless to say, Natalie and Abigail will definately have people on top of things when it comes to development!
There's still no discussion on coming home. Obviously, they aren't eating very well so until they catch on, mum's the word.
Here's a quick recap of weight:
Abby
Mon - 2035g
Tues - 2110g
Wed - 2150g (4lb 11.8oz) - can you believe this! She'll be 5 lbs before coming home!
Natalie
Mon - 1655g
Tues - 1702g
Wed - 1739g (3lb 13.3oz)
Okay - here we go.
Tuesday
Yesterday, the girls were 13 weeks old. They are just growing and growing. Abby gained nearly 2 ox in one night. She went from 2035g Monday to 2110g (4lb 10.5oz) on Tuesday! Wow! Natalie's doing pretty well yourself - she was 1702g (3lb 12oz) on Tuesday. They have had a little reflux with their feedings. I think they are going to start Natalie on Zantax to help. They haven't been doing very well with their bottle feedings, but hopefully they will get better.
Natalie also had a cortizone test to see how well she's doing without receiving the hydrocortizone. We haven't heard what the results were yet. Abby will have the test Wednesday.
Wednesday
Wednesday morning the doctor called and said Abby's hemocrit (red blood cell production) was at 21. That's pretty low. I wasn't too surprised since it had been at 24 a few days ago. So, little Abby needed a blood transfusion. They do it over two days so she'll get more on Thursday. She did great though and by the end was just as pink as could be!
Once again, neither did well with nippling in the morning. However, they each did better with breastfeeding in the afternoon. At her 5pm feeding, Natalie took 14ml. At 8pm, Abby did 24ml. She did great! They seem to do better with breastfeeding which is perfect if you ask me!
At lunch we had a visit from a case worker from the state Infant-Child Development Coordinator to explain some of the services available to the girls. She will help coordinate OT, PT, Speech and whatever else to help get the girls up to date with development. The best part is it's all free! Most of the people will come to our house to do the therapies which is wonderful. Just as a note - my mom actually used to do this job. She actually did evaluations and provided the therapies. Needless to say, Natalie and Abigail will definately have people on top of things when it comes to development!
There's still no discussion on coming home. Obviously, they aren't eating very well so until they catch on, mum's the word.
Here's a quick recap of weight:
Abby
Mon - 2035g
Tues - 2110g
Wed - 2150g (4lb 11.8oz) - can you believe this! She'll be 5 lbs before coming home!
Natalie
Mon - 1655g
Tues - 1702g
Wed - 1739g (3lb 13.3oz)
Monday, August 13, 2007
What a Wonderful World...
We have had a great weekend. Thursday and Friday Poppy visited. Then Nana and Mema arrived Friday night and have visited for several hours on Saturday and Sunday (and will again on Monday). Grandpa and Ya-Yai also came on Saturday. It's been a grandparents weekend! Mommy and Daddy have barely held the girls:-)
Everything continues to go well. They raised the volume of their feeds a little. Abby is receiving 42cc and Natalie 34cc. We are also still working on breastfeeding which is going quite well. Today Abby took 20cc and Natalie a whooping 26cc! It's actually somewhat unusual for preemies to learn to breastfeed, especially 26 week old preemies. But, I think my girls are going to figure it out! Mommy is getting the hang of it either. Note to men: it's not as easy as it looks! But, we are figuring it out. One of the Lactation Consultants, Cathy, also comes to DRH, and she's wonderful. I'm quite happy it's working out as bottle feeding and pumping would be a chore.
Their weights the past few days...
Abby
thurs 1857
fri 1912
Sat 1967
Sun 2000 4.54lb
Natalie
thurs 1488
fri 1523
sat 1585
sun 1628 3.942lbs
I have posted some new pictures, so be sure to check them out.
Also, thanks to Tamara and Carolina for visiting the babies and bringing such lovely gifts. As always, Tamara has great taste and brought a Peter Rabbit plate, cup and bank. Little did she know my mom had already started collecting Peter Rabbit for the girls!
Everything continues to go well. They raised the volume of their feeds a little. Abby is receiving 42cc and Natalie 34cc. We are also still working on breastfeeding which is going quite well. Today Abby took 20cc and Natalie a whooping 26cc! It's actually somewhat unusual for preemies to learn to breastfeed, especially 26 week old preemies. But, I think my girls are going to figure it out! Mommy is getting the hang of it either. Note to men: it's not as easy as it looks! But, we are figuring it out. One of the Lactation Consultants, Cathy, also comes to DRH, and she's wonderful. I'm quite happy it's working out as bottle feeding and pumping would be a chore.
Their weights the past few days...
Abby
thurs 1857
fri 1912
Sat 1967
Sun 2000 4.54lb
Natalie
thurs 1488
fri 1523
sat 1585
sun 1628 3.942lbs
I have posted some new pictures, so be sure to check them out.
Also, thanks to Tamara and Carolina for visiting the babies and bringing such lovely gifts. As always, Tamara has great taste and brought a Peter Rabbit plate, cup and bank. Little did she know my mom had already started collecting Peter Rabbit for the girls!
Friday, August 10, 2007
NICU Day 87
Wow - 87 days! Sounds like forever, but the end is near.
Last night and this morning Poppy was here for a visit. We had a great time holding the girls and talking. Nana and Mema will be here this weekend and I know Natalie and Abigail are very excited.
Today we had some good reports. Abby had her repeat eye exam for ROP. Good news!! Her eyes still look better. There is only one place on her left eye that is of concern, but the doctor didn't seem concerned. She feels it will continue to improve. We also had a breastfeeding session with Abby. We tried a breast shield this time and it worked much better. Abby did great! She sucked about 10 minutes or so. We didn't weigh her before, so we didn't know how much she ate, but we thought about 10 ml. She ultimately got tired and sleepy, but considering they had just performed the eye exam (which isn't very fun), she was very agreeable. I feel much better about it now. I had really begun to think they'd never figure it out and I'd be stuck pumping and bottle feeding the breast milk. Today was very encouraging. We will try again at least once a day.
Natalie also had some good reports. PT came in about 1pm and did a little work with her. She said Natalie is getting much better at organizing herself and pulling in her legs and arms. (more on "organizing" in another post) Today she was so cute all wrapped up in her bed. She was sucking on her little thumb knuckle. Just darling:-)
Natalie also stopped receiving the microlipids today. She will continue to receive the progestimil at 3/4 teaspoon.
Their recent weights:
Natalie:
Thurs - 1488g
Fri - 1523 (3 lb 5.7oz)
Abigail
Thurs - 1857g
Fri - 1912g (4lb 3.4oz)
Last night and this morning Poppy was here for a visit. We had a great time holding the girls and talking. Nana and Mema will be here this weekend and I know Natalie and Abigail are very excited.
Today we had some good reports. Abby had her repeat eye exam for ROP. Good news!! Her eyes still look better. There is only one place on her left eye that is of concern, but the doctor didn't seem concerned. She feels it will continue to improve. We also had a breastfeeding session with Abby. We tried a breast shield this time and it worked much better. Abby did great! She sucked about 10 minutes or so. We didn't weigh her before, so we didn't know how much she ate, but we thought about 10 ml. She ultimately got tired and sleepy, but considering they had just performed the eye exam (which isn't very fun), she was very agreeable. I feel much better about it now. I had really begun to think they'd never figure it out and I'd be stuck pumping and bottle feeding the breast milk. Today was very encouraging. We will try again at least once a day.
Natalie also had some good reports. PT came in about 1pm and did a little work with her. She said Natalie is getting much better at organizing herself and pulling in her legs and arms. (more on "organizing" in another post) Today she was so cute all wrapped up in her bed. She was sucking on her little thumb knuckle. Just darling:-)
Natalie also stopped receiving the microlipids today. She will continue to receive the progestimil at 3/4 teaspoon.
Their recent weights:
Natalie:
Thurs - 1488g
Fri - 1523 (3 lb 5.7oz)
Abigail
Thurs - 1857g
Fri - 1912g (4lb 3.4oz)
Wednesday, August 8, 2007
On the Road Again...
Abby is on the move - she is being returned to DRH this afternoon. We are very sad to leave Duke - again. We just love it there. It was so great to see some of the nurses again. We will definately visit again with both girls. We are happy that Natalie and Abigail will be together again. Two hospitals was a chore.
Natalie is doing well this morning as well. She will receive the other half of her blood transfusion this afternoon. I am going to try to breastfed her later tonight. I'll also give Abby a try as well. She did very well with her bottle this morning.
A note: I've mentioned little Buddy from Caswell County before. He is having a hard time right now. Please pray for him and his family.
Update:
Abby arrived happily at DRH about 5:30pm. She did very well with the transport. It was very nice to have them back together, even though we miss Duke. They aren't in the same bed right now because the beds DRH are too small. We may put them together for naps, but they will still have their own beds.
The girls continue to do well. I gave Natalie a bottle and she took 22cc. Abby had a bottle in the morning at Duke and took 34cc. Feed and grow...feed and grow...
Natalie is doing well this morning as well. She will receive the other half of her blood transfusion this afternoon. I am going to try to breastfed her later tonight. I'll also give Abby a try as well. She did very well with her bottle this morning.
A note: I've mentioned little Buddy from Caswell County before. He is having a hard time right now. Please pray for him and his family.
Update:
Abby arrived happily at DRH about 5:30pm. She did very well with the transport. It was very nice to have them back together, even though we miss Duke. They aren't in the same bed right now because the beds DRH are too small. We may put them together for naps, but they will still have their own beds.
The girls continue to do well. I gave Natalie a bottle and she took 22cc. Abby had a bottle in the morning at Duke and took 34cc. Feed and grow...feed and grow...
Tuesday, August 7, 2007
Great News! - 12 week birthday
Abby had her repeat eye exam and the news was great! The ROP in her left eye had improved and was back in Stage 2. She will not need to have the surgery at this time. We are so thankful it looks like her vision will be okay. Of course, the ROP could take a turn for the worse and she could end up needing surgery after all, but for now, the news is very good. She will be checked again in a week. She is headed back to DRH as soon as they have a bed open.
Both girls had really good days. Yesterday, they were each a little fussy. Maybe they were missing each other. They still apparently are able to channel and copy each other even at different hospitals!
Monday, Abby tried a new, bigger nipple to help with her feeding. This nipple has three holes, but is a little harder to suck. So, even thought there are more holes, the milk comes out slower. I worked with Speech/OT to give her the 3pm bottle Monday and she took 20 of 39ml. Her night nurse, Mandy, reported that she too 15ml at her 9pm bottle. She was also given a bigger paci to go along with the bigger nipple so she can get used to the size. Today (Tuesday) she didn't do as well with her 3pm bottle, but she may have been tired out after her eye exam. Hopefully, she'll do better tomorrow. She is at the point where she has to eat her way out of the NICU. Her weight for the past few days:
Fri - 1780g
Sat - 1780g
Sun - 1820g
Mon - 1830g (just over 4 pounds!)
Natalie was also a little fussy yesterday, but was doing better today. Yesterday, she received her first big girl bed! It's a very small plastic-isolette like bed. (Abby actually has a crib-type bed.) They don't have the crib bed's at DRH because they take up so much room. In any case, she looks so cute in her little bed. She stays bundled up, but she seems to be holding her temperature well. Her weight was up and down a little. It's possible that trying to stay warm affected her. Also, she tested a little anemic Tuesday morning, so she received a transfusion this afternoon. Her weight:
Sat - 1371g
Sun - 1399g
Mon - 1445g
Tues - 1424g (3.23lbs.)
She has also been finicky about her bottles. The nurse hoped that the transfusion would help with her alertness and interest.
I'll try to post some more pictures soon. We have some adorable ones of Natalie in a little pink sundress:-)
**Mommy was a little ahead of the game and had originally posted that the girls were 13 weeks old. They are actually 12 weeks old. Mommy can't count. That's why Daddy is in charge of math homework:-)
Both girls had really good days. Yesterday, they were each a little fussy. Maybe they were missing each other. They still apparently are able to channel and copy each other even at different hospitals!
Monday, Abby tried a new, bigger nipple to help with her feeding. This nipple has three holes, but is a little harder to suck. So, even thought there are more holes, the milk comes out slower. I worked with Speech/OT to give her the 3pm bottle Monday and she took 20 of 39ml. Her night nurse, Mandy, reported that she too 15ml at her 9pm bottle. She was also given a bigger paci to go along with the bigger nipple so she can get used to the size. Today (Tuesday) she didn't do as well with her 3pm bottle, but she may have been tired out after her eye exam. Hopefully, she'll do better tomorrow. She is at the point where she has to eat her way out of the NICU. Her weight for the past few days:
Fri - 1780g
Sat - 1780g
Sun - 1820g
Mon - 1830g (just over 4 pounds!)
Natalie was also a little fussy yesterday, but was doing better today. Yesterday, she received her first big girl bed! It's a very small plastic-isolette like bed. (Abby actually has a crib-type bed.) They don't have the crib bed's at DRH because they take up so much room. In any case, she looks so cute in her little bed. She stays bundled up, but she seems to be holding her temperature well. Her weight was up and down a little. It's possible that trying to stay warm affected her. Also, she tested a little anemic Tuesday morning, so she received a transfusion this afternoon. Her weight:
Sat - 1371g
Sun - 1399g
Mon - 1445g
Tues - 1424g (3.23lbs.)
She has also been finicky about her bottles. The nurse hoped that the transfusion would help with her alertness and interest.
I'll try to post some more pictures soon. We have some adorable ones of Natalie in a little pink sundress:-)
**Mommy was a little ahead of the game and had originally posted that the girls were 13 weeks old. They are actually 12 weeks old. Mommy can't count. That's why Daddy is in charge of math homework:-)
Saturday, August 4, 2007
Good News and the Not-as-bad-as-we-thought News
Friday turned out to be an interesting day. I was able to go to the hospital and spend time with the girls for the first time in nearly a week. It was so great to be with them. They are getting so big and are just so cute.
Early Friday afternoon, just before I arrived, the girls had their check-up eye exams to check the progression of ROP (retinothopy of prematurity). It's complicated to explain. If you really want to know, I suggest you google it. Otherwise, just know it has to do with the blood vessels growing correctly from the eye and attaching in the right places. If they don't, it can cause various degrees of vision problems including blindness.
I'd been there a little while when the doctor had news about the results of the exam. Natalie's eyes looked very good. What little ROP she had shown on her last exam actually appeared to be correcting itself and looked better than before. Abigail had a similar report for her right eye. Her left eye was a different story. It showed increased ROP to Stage 3 (of 5). The DR doctor felt that she may need corrective laser surgery. So, (this is the good news part) - they transferred Abby back to Duke to be seen by the doctor there. Apparently they only do the surgery at Duke. Therefore, to our great delight, Abby arrived back at Duke at about 8:30pm Friday evening. It was like coming home. The familiar waiting room, the friendly front desk staff, the short sleeved gowns and cushy chairs...It was wonderful. Ben accused me of being downright giddy. (and I was!)
When we walked in the room to see Abby, I'm proud to say I recognized her right away. But, we almost didn't believe it and double checked her tag because she was in a "big girl bed"! She was no longer in an isolette, but an open bed with a heater lamp about 2.5 feet above her. She was just so beautiful. She was actually just lying there without any blankets, and although her temp was good, I thought she looked cold, so we covered her with her special pink blanket and placed her little froggy at the head of her bed. I just can't say how adorable she looked.
The doctor came in about 9:15pm and checked her eyes. It's not a really fun exam and the babies don't care much for it. I don't think it hurts really; it's just uncomfortable. Of course, to Abby it was all the same and she cried and cried. Her darling daddy couldn't take it. He had to leave the room. It was really just too sweet and it was immediately clear who would be taking the kids for their vaccinations and any shots in the future.
In the end - the news was much better than we expected. The Duke doctor said she did NOT have Stage 3 ROP. There were a few spots that were stage 3, but overall it was still stage 2 and she felt it may correct itself as the other eye had. Also, for now, Abby does not need any corrective surgery. They will continue to monitor it and check her again in about a week. There's a chance it could worsen and she could need the surgery after all, but there's also a chance it will get better and she won't. We just have to wait and see.
For those who were paying attention - yes, Abby's trip back to Duke was a solo one. They didn't have enough room for Natalie too. So, poor Natalie is still stuck back at Durham Regional. We aren't sure how long Abby will stay at Duke. They may send her back to DR, then bring her back for her check-up. Or, they may keep her until the check-up. It probably depends on how much room they have and if they need the beds for children who are more critical. I'm going to ask about Natalie being transferred to Duke as well, especially if they are going to keep Abby for at least a week. Honestly, I'd be surprised if they agree to it. There's really no medical reason. I just don't like them being apart, and it does make it harder on us to go between two hospitals. However, if Abby can stay at Duke another week, I'll gratefully hospital-hop for as long as necessary.
Please pray that Abby's eye will heal and there will be no damage to her eye sight. As always, thanks for your prayers.
Early Friday afternoon, just before I arrived, the girls had their check-up eye exams to check the progression of ROP (retinothopy of prematurity). It's complicated to explain. If you really want to know, I suggest you google it. Otherwise, just know it has to do with the blood vessels growing correctly from the eye and attaching in the right places. If they don't, it can cause various degrees of vision problems including blindness.
I'd been there a little while when the doctor had news about the results of the exam. Natalie's eyes looked very good. What little ROP she had shown on her last exam actually appeared to be correcting itself and looked better than before. Abigail had a similar report for her right eye. Her left eye was a different story. It showed increased ROP to Stage 3 (of 5). The DR doctor felt that she may need corrective laser surgery. So, (this is the good news part) - they transferred Abby back to Duke to be seen by the doctor there. Apparently they only do the surgery at Duke. Therefore, to our great delight, Abby arrived back at Duke at about 8:30pm Friday evening. It was like coming home. The familiar waiting room, the friendly front desk staff, the short sleeved gowns and cushy chairs...It was wonderful. Ben accused me of being downright giddy. (and I was!)
When we walked in the room to see Abby, I'm proud to say I recognized her right away. But, we almost didn't believe it and double checked her tag because she was in a "big girl bed"! She was no longer in an isolette, but an open bed with a heater lamp about 2.5 feet above her. She was just so beautiful. She was actually just lying there without any blankets, and although her temp was good, I thought she looked cold, so we covered her with her special pink blanket and placed her little froggy at the head of her bed. I just can't say how adorable she looked.
The doctor came in about 9:15pm and checked her eyes. It's not a really fun exam and the babies don't care much for it. I don't think it hurts really; it's just uncomfortable. Of course, to Abby it was all the same and she cried and cried. Her darling daddy couldn't take it. He had to leave the room. It was really just too sweet and it was immediately clear who would be taking the kids for their vaccinations and any shots in the future.
In the end - the news was much better than we expected. The Duke doctor said she did NOT have Stage 3 ROP. There were a few spots that were stage 3, but overall it was still stage 2 and she felt it may correct itself as the other eye had. Also, for now, Abby does not need any corrective surgery. They will continue to monitor it and check her again in about a week. There's a chance it could worsen and she could need the surgery after all, but there's also a chance it will get better and she won't. We just have to wait and see.
For those who were paying attention - yes, Abby's trip back to Duke was a solo one. They didn't have enough room for Natalie too. So, poor Natalie is still stuck back at Durham Regional. We aren't sure how long Abby will stay at Duke. They may send her back to DR, then bring her back for her check-up. Or, they may keep her until the check-up. It probably depends on how much room they have and if they need the beds for children who are more critical. I'm going to ask about Natalie being transferred to Duke as well, especially if they are going to keep Abby for at least a week. Honestly, I'd be surprised if they agree to it. There's really no medical reason. I just don't like them being apart, and it does make it harder on us to go between two hospitals. However, if Abby can stay at Duke another week, I'll gratefully hospital-hop for as long as necessary.
Please pray that Abby's eye will heal and there will be no damage to her eye sight. As always, thanks for your prayers.
Friday, August 3, 2007
Still growing...
The girls continue to feed and grow. They have both been a little disinterested in their bottles for the last day or so. OT (Occupational Therapy) and Speech have been working with them each once a day. As soon as I am well enough to see and hold the girls again (hopefully tomorrow - Friday), I am going to start trying to breastfeed and give their bottles. Maybe they will respond better for their Mommy.
Review and Update:
starting Tuesday, July 24
Abigail
Tues -1427g (3.2lb)
Wed - 1440g
Thurs - 1457g
Fri -
Sat - 1553g
Sun - 1584g
Mon - 1624g
Tues - 1652g
Wed -
Thurs - 1687g
Fri - 1735g (3.13lb)
Natalie
Tues - 1162g (2.8lb)
Wed - 1186g
Thurs - 1207g
Fri -
Sat - 1247g
Sun - 1281g
Mon - 1302g
Tues - 1322g
Wed -
Thurs - 1342g (2.15lb)
Fri -
On Wednesday, I spoke with the doctor about how the girls are doing and what the plan is for the next few weeks. I also got a run down of what kind of drugs they are still on and why.
They will have another eye exam on Friday to check the progression (or hopefully non-progression) of the ROP.
Right now, they are both still receiving hydrocortizone for an adrenal insufficiency. The adrenal glands produce cortisal which is one of the hormones involved in stress situations. Sometimes preemies don't make enough. They are tapering it off and it will end on Aug 6. On August 13 they will have a stimulation test that involves introducing a different hormone that prompts the adrenal glands to produce cortisal so they can measure how much is produced and see if the glands are working properly.
They are also each receiving elemental iron to help maintain their red blood count. There's still a chance one or both may need another blood transfusion before they are discharged.
They also receive calitril - a calcium-type supplement for their bones. It also helps prevent a baby form of rickets.
Because of the possibility of a bladder infection that could be caused by the back flow of urine into the bladder, they are receiving a prophylactic dose of amoxicilin. Before they leave the hospital, they will have a VCUG test. I have no idea what that stands for, but basically they will insert a catheter into the bladder and inject a radioactive dye to allow them to see where the urine is going. If it's backing up, they will go home with antibiotics.
To help add additional vitamins and minerals and nutrition, they receive a special boost of pregestimil powder, a special preemie formula.
Natalie is also receiving a boost of microlipids to her feeds. It's to give her extra calories so she can grow faster.
We talked about the forecast for their homecoming. As expected, the doctor was non-committal. They have to meet the criteria I've mentioned before - 4lbs, maintain their temps, and take all their feeds orally.
The doctor did not indicate that they are having any major problems or areas of concern which is really great. They continue to do very well.
The main concern right now is their inconsistently in taking their bottles. Please pray for them to develop a sudden liking for bottle feeding.
Review and Update:
starting Tuesday, July 24
Abigail
Tues -1427g (3.2lb)
Wed - 1440g
Thurs - 1457g
Fri -
Sat - 1553g
Sun - 1584g
Mon - 1624g
Tues - 1652g
Wed -
Thurs - 1687g
Fri - 1735g (3.13lb)
Natalie
Tues - 1162g (2.8lb)
Wed - 1186g
Thurs - 1207g
Fri -
Sat - 1247g
Sun - 1281g
Mon - 1302g
Tues - 1322g
Wed -
Thurs - 1342g (2.15lb)
Fri -
On Wednesday, I spoke with the doctor about how the girls are doing and what the plan is for the next few weeks. I also got a run down of what kind of drugs they are still on and why.
They will have another eye exam on Friday to check the progression (or hopefully non-progression) of the ROP.
Right now, they are both still receiving hydrocortizone for an adrenal insufficiency. The adrenal glands produce cortisal which is one of the hormones involved in stress situations. Sometimes preemies don't make enough. They are tapering it off and it will end on Aug 6. On August 13 they will have a stimulation test that involves introducing a different hormone that prompts the adrenal glands to produce cortisal so they can measure how much is produced and see if the glands are working properly.
They are also each receiving elemental iron to help maintain their red blood count. There's still a chance one or both may need another blood transfusion before they are discharged.
They also receive calitril - a calcium-type supplement for their bones. It also helps prevent a baby form of rickets.
Because of the possibility of a bladder infection that could be caused by the back flow of urine into the bladder, they are receiving a prophylactic dose of amoxicilin. Before they leave the hospital, they will have a VCUG test. I have no idea what that stands for, but basically they will insert a catheter into the bladder and inject a radioactive dye to allow them to see where the urine is going. If it's backing up, they will go home with antibiotics.
To help add additional vitamins and minerals and nutrition, they receive a special boost of pregestimil powder, a special preemie formula.
Natalie is also receiving a boost of microlipids to her feeds. It's to give her extra calories so she can grow faster.
We talked about the forecast for their homecoming. As expected, the doctor was non-committal. They have to meet the criteria I've mentioned before - 4lbs, maintain their temps, and take all their feeds orally.
The doctor did not indicate that they are having any major problems or areas of concern which is really great. They continue to do very well.
The main concern right now is their inconsistently in taking their bottles. Please pray for them to develop a sudden liking for bottle feeding.
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