My happy news is that I fit into a pair of non-maternity pants! Just thought I’d share.
The girls had a normal day. Evie is up to 19.5cc of 24 calorie milk every 3 hours and Maggie is at 20cc of the same plus something else that increases her calories. Maggie is still smaller and didn’t gain any weight today, so they are trying to pack on the grams. Evie received her last dose of antibiotics today and is not showing any signs of infection, so that should be cleared up. The family made kangaroo care into naptime today, it was quite nice. Maggie got to go back on the nasal cannula this afternoon and stay on as long as she handled it – which was until almost 9pm when she had her 2nd spell. She was probably getting tired and needed that positive pressure from the CPAP. She wasn’t real thrilled with her “scuba gear”, but I told her if she was going to stop breathing there would be consequences. It’s a lesson we all have to learn in life.
Evie & Maggie Oct 2009
Saturday, May 31, 2008
Friday, May 30, 2008
Friday May 30, 2008
Friday May 30, 2008
The girls continue to do well and both gained weight today. They had their head scans this morning and Evie’s was clear. Maggie has had an intraventricular hemorrhage, a tiny bit of bleeding in the brain, classified as a level 1 (out of 4 levels). However, it appears that it is already resolving itself and probably started a couple weeks ago. With this type of hemorrhage, there isn’t a treatment that would remedy the situation faster than it would resolve itself, and it doesn’t really cause any problems. Dr. Hiller said it isn’t really an issue and nothing to worry about; it is just something we should be informed of. The rest of the day went uphill. Maggie got to do a trial with the nasal cannula instead of the CPAP for about 6 hours during the day, which she seemed to do quite well with. Dad held her for a portion of that time. The cannula provides supplemental oxygen, but not the pressure like the CPAP – and it has much smaller tubing which is more comfortable and easier to keep in place. Evie snuggled with Mom during the afternoon and is quite the talker. She squirmed and made little noises for a significant period of time, but not a lot of crying. We gave Evie’s nose a rest and just blew oxygen at her, which she appreciated. When we put her back, I changed her diaper and cleaned her up a bit and got her "portrait" without any tubes. Okay, I’m not the best photographer - see pictures added on the side of the page.
The girls were sleeping soundly when we checked on them after enjoying a nice evening with Cousin Shari, and Cathy, Jason, & Michelle Jury and Jason’s sister Heidi. They invited us over for a BBQ and it even turned out to be nice enough to eat outside; it was quite a treat.
The girls continue to do well and both gained weight today. They had their head scans this morning and Evie’s was clear. Maggie has had an intraventricular hemorrhage, a tiny bit of bleeding in the brain, classified as a level 1 (out of 4 levels). However, it appears that it is already resolving itself and probably started a couple weeks ago. With this type of hemorrhage, there isn’t a treatment that would remedy the situation faster than it would resolve itself, and it doesn’t really cause any problems. Dr. Hiller said it isn’t really an issue and nothing to worry about; it is just something we should be informed of. The rest of the day went uphill. Maggie got to do a trial with the nasal cannula instead of the CPAP for about 6 hours during the day, which she seemed to do quite well with. Dad held her for a portion of that time. The cannula provides supplemental oxygen, but not the pressure like the CPAP – and it has much smaller tubing which is more comfortable and easier to keep in place. Evie snuggled with Mom during the afternoon and is quite the talker. She squirmed and made little noises for a significant period of time, but not a lot of crying. We gave Evie’s nose a rest and just blew oxygen at her, which she appreciated. When we put her back, I changed her diaper and cleaned her up a bit and got her "portrait" without any tubes. Okay, I’m not the best photographer - see pictures added on the side of the page.
The girls were sleeping soundly when we checked on them after enjoying a nice evening with Cousin Shari, and Cathy, Jason, & Michelle Jury and Jason’s sister Heidi. They invited us over for a BBQ and it even turned out to be nice enough to eat outside; it was quite a treat.
Thursday, May 29, 2008
Thursday May 29, 2008
The girls turned 4 weeks old today, and my have they grown. They are continuing to do quite well and thankfully are making the nurses days fairly easy. Maggie and Mom had quite the day today. I was around at 2pm to change her diaper right after Nurse BJ had given her a suppository. So, I got poopy diaper duty. However, once I got the diaper off, she squirted a bunch more. Luckily, I had the wipes properly aligned and kept if off of the bed and myself. (Sorry about the poo detail, it was a first so thought I’d better document!) Dad missed it, but would have been proud. Then we had kangaroo care from 3-5pm, without much of a cry (but hiccups). Maggie was a bit stinky, so when we put her back in her bed, I gave her a little “sponge bath” – mostly just wiped her with wet wipes. Nurse BJ had taken off her CPAP and her feeding tube had come out so her little head was free. Maggie was a little unhappy with the cleaning (what babies aren’t?) – you can see that on the pictures in the album – but then she had her eyes wide open and was looking around. We don’t get to see those girls in their true form very often and it just warmed my heart – there is a beautiful little girl under all that stuff.
Evie had some kangaroo time with Dad and also had the hiccups – so Dad got a recording. I’ll try to figure out how to load that. She is also doing much better on her oxygen needs today (she is quite the oxygen hog). Evie finally got to come off of her IV fluids (TPN and lipids) and is just on a maintenance drip, so they increased her feedings and started fortifying them. This little one continues to pack on the grams and was at 1250 (2lb 12oz), while Maggie came in at 1040 (2lb 4.5 oz). Oh, and in speaking with Dr. Hiller, Evie’s ductus is probably closed; the murmur that they had heard over the last couple days was likely turbulence due to her growing circulatory system (flow turbulence). We’ll probably check Maggie’s again next week.
Evie had some kangaroo time with Dad and also had the hiccups – so Dad got a recording. I’ll try to figure out how to load that. She is also doing much better on her oxygen needs today (she is quite the oxygen hog). Evie finally got to come off of her IV fluids (TPN and lipids) and is just on a maintenance drip, so they increased her feedings and started fortifying them. This little one continues to pack on the grams and was at 1250 (2lb 12oz), while Maggie came in at 1040 (2lb 4.5 oz). Oh, and in speaking with Dr. Hiller, Evie’s ductus is probably closed; the murmur that they had heard over the last couple days was likely turbulence due to her growing circulatory system (flow turbulence). We’ll probably check Maggie’s again next week.
Wednesday, May 28, 2008
Wednesday May 28, 2008
It was finally Evie’s turn to have kangaroo care today – but I’m not sure she really noticed. She made one little peep as she moved out of her incubator and to me, and then was fast asleep the entire time. But Evie is doing quite well on her CPAP, I think she is much happier than trying to breathe through a little tube, and also thankful to get it out of her throat. Thus, Evie doesn’t mind the nose prongs too much. However, she does have an issue with keeping her mouth open and letting the air escape out. So, we blocked that with her pacifier J Evie and I had a nice snuggle and mostly talked to Cousin Shari (who drove up today) and Joy (a new mom that has twin girls with the same story as ours, but 8 weeks ahead). Evie is now taking several medications PO (per os - origin is Latin meaning “by mouth” i.e. orally) including iron which will help with red blood cell production. Evie pretty much slept all day and night – she must be working on her growing. The Doctor and Nurses now hear a murmur on Evie, it reappeared on Sunday. But, as long as it doesn’t cause any symptoms, we’ll just wait it out along with Maggie’s.
Maggie is being quite the show-off today, as she is keeping her oxygen levels in the 20’s, eating 24 calorie per ounce fortified milk, and sleeping soundly as well. However, her big stunt was this evening. I pulled open her curtain and saw that her nose prongs were sitting below and to the side of her nose; however, her oxygen saturation was perfectly fine, and her nurse even had to turn her down to 21% (room air). I think she’s trying to prove that she doesn’t need those stinking nose prongs and would be happy to do without them. So, we let her have her way as long as she behaved – wow that girl! The night nurses were happy to be having a quiet night so far and we hope that it stays that way.
Maggie is being quite the show-off today, as she is keeping her oxygen levels in the 20’s, eating 24 calorie per ounce fortified milk, and sleeping soundly as well. However, her big stunt was this evening. I pulled open her curtain and saw that her nose prongs were sitting below and to the side of her nose; however, her oxygen saturation was perfectly fine, and her nurse even had to turn her down to 21% (room air). I think she’s trying to prove that she doesn’t need those stinking nose prongs and would be happy to do without them. So, we let her have her way as long as she behaved – wow that girl! The night nurses were happy to be having a quiet night so far and we hope that it stays that way.
Tuesday, May 27, 2008
Tuesday May 27, 2008
Based on the number of people in the hall at the hospital, we can tell if it is a weekday, as it sure feels much busier. However, it was a typical day in the NICU.
But on this blog, it's guest blogging day by Joe! Yeah, I've been quiet so far, and we'll see how long it takes me to wear out my welcome. The girls had a good night of boring growing, which is the best kind of night. I got to hold Maggie today, and she's learned to cry, finally. I'll try to get a recording of it to share. She's almost a normal (but tiny) baby today - I have her PIC line after it was removed! This was her main IV that ran from her lower arm almost to her heart. It's a tiny tube of silicon (like 15# fishing line diameter) that was threaded through her vein. I held her for about two hours, she drooled and squirmed and keeps trying to say "Dada", she'll get it right soon. Maggie's also enjoying her fortified latte bongs - a syringe of fortified milk with caffeine and things like synthroid (for her thyroid). You just hold it above her and it glugs into her tummy. And seeing her in her isolette breathing freely on her own (briefly) with no IVs, just taped on servos and probes, is wonderful.
Evie has even bigger news! We went to visit after 5:00, and we actually panicked when checking out her settings (there's lots of numbers to check when you visit) - her vent had a breath rate of ZERO! Carrie launched into appropriate panic when Patti said "She's on CPAP!" Yay! Continuous Positive Air Pressure is no fun for babies, but much gentler on sick lungs than the ventilator breathing for them. And Evie finally handled her breathing well - she hated being at the oxygen saturation she was supposed to be at - 80-89% to get her O2 to breathe, but not too much to burn out things like alveoli and retina - those we need. She always hung out 77% and then would jump to 91% and back to 76%, with her poor nurses constantly manning the oxygen dial. But on her new CPAP, she was doing an even 87% or so. Joy! Patti did a little "I told you so" dance - she thought Evie should have been off the vent on Sunday. Evie's still on the bad tasting TPN and lipid IVs through her PIC line, though, so she's more wired than her sis.
I'm bummed Carrie missed seeing the endotracheal tube removed - it's a kick. They pull the tape off the bar holding it in, and it pops out. Simple as that. Putting them in is way, way trickier. Then a nurse waves a antihistamine around in front of her (which gets the little patient totally wired), and the put on the scuba-style CPAP nose prongs of discomfort. But Evie doesn't seem to mind, and didn't fight with preemie fury like Maggie. Preemie fury isn't too scary, or long lasting, but is impressive on some level.
Other stuff - darn ET breathing tube on Evie gave her an infection - so she's on antibiotics while somebody tries to grow fuzzy stuff from it in the lab. But with the tube gone, she should bounce back quickly, and she's still the chunky one. If you can be chunky at 2 pounds 11 ounces.
Also, transfusions. Evie got 20 CC's of irradiated O- red blood cells yesterday through her PIC line. Thank goodness for the Internet - you can really find out what's up. Turns out red blood cells can handle a TON of radiation - like 3000 RADs don't phase a red blood cell at all, where if you get more than 10RAD yourself in a short time, you'll probably want some iodine and medical attention. But the irradiation kills white blood cells (leukocytes). This is good because leukocytes from a person with a functioning immune system (adult) put in an infant without a functioning immune system will tend to start replicating in the infant's bone marrow and attacking organs. That's called TA-GVHD, catchy, huh? But easier to say than "transfusion associated graft versus host disease". Whatever you call it, it's pretty much fatal once you have it. So we like irradiated blood for our girls.
If you read this far and want more medical jargon, post a comment! If you want crude jokes, or sex ed for preemies as taught by nurse BJ, post a comment, too.
But on this blog, it's guest blogging day by Joe! Yeah, I've been quiet so far, and we'll see how long it takes me to wear out my welcome. The girls had a good night of boring growing, which is the best kind of night. I got to hold Maggie today, and she's learned to cry, finally. I'll try to get a recording of it to share. She's almost a normal (but tiny) baby today - I have her PIC line after it was removed! This was her main IV that ran from her lower arm almost to her heart. It's a tiny tube of silicon (like 15# fishing line diameter) that was threaded through her vein. I held her for about two hours, she drooled and squirmed and keeps trying to say "Dada", she'll get it right soon. Maggie's also enjoying her fortified latte bongs - a syringe of fortified milk with caffeine and things like synthroid (for her thyroid). You just hold it above her and it glugs into her tummy. And seeing her in her isolette breathing freely on her own (briefly) with no IVs, just taped on servos and probes, is wonderful.
Evie has even bigger news! We went to visit after 5:00, and we actually panicked when checking out her settings (there's lots of numbers to check when you visit) - her vent had a breath rate of ZERO! Carrie launched into appropriate panic when Patti said "She's on CPAP!" Yay! Continuous Positive Air Pressure is no fun for babies, but much gentler on sick lungs than the ventilator breathing for them. And Evie finally handled her breathing well - she hated being at the oxygen saturation she was supposed to be at - 80-89% to get her O2 to breathe, but not too much to burn out things like alveoli and retina - those we need. She always hung out 77% and then would jump to 91% and back to 76%, with her poor nurses constantly manning the oxygen dial. But on her new CPAP, she was doing an even 87% or so. Joy! Patti did a little "I told you so" dance - she thought Evie should have been off the vent on Sunday. Evie's still on the bad tasting TPN and lipid IVs through her PIC line, though, so she's more wired than her sis.
I'm bummed Carrie missed seeing the endotracheal tube removed - it's a kick. They pull the tape off the bar holding it in, and it pops out. Simple as that. Putting them in is way, way trickier. Then a nurse waves a antihistamine around in front of her (which gets the little patient totally wired), and the put on the scuba-style CPAP nose prongs of discomfort. But Evie doesn't seem to mind, and didn't fight with preemie fury like Maggie. Preemie fury isn't too scary, or long lasting, but is impressive on some level.
Other stuff - darn ET breathing tube on Evie gave her an infection - so she's on antibiotics while somebody tries to grow fuzzy stuff from it in the lab. But with the tube gone, she should bounce back quickly, and she's still the chunky one. If you can be chunky at 2 pounds 11 ounces.
Also, transfusions. Evie got 20 CC's of irradiated O- red blood cells yesterday through her PIC line. Thank goodness for the Internet - you can really find out what's up. Turns out red blood cells can handle a TON of radiation - like 3000 RADs don't phase a red blood cell at all, where if you get more than 10RAD yourself in a short time, you'll probably want some iodine and medical attention. But the irradiation kills white blood cells (leukocytes). This is good because leukocytes from a person with a functioning immune system (adult) put in an infant without a functioning immune system will tend to start replicating in the infant's bone marrow and attacking organs. That's called TA-GVHD, catchy, huh? But easier to say than "transfusion associated graft versus host disease". Whatever you call it, it's pretty much fatal once you have it. So we like irradiated blood for our girls.
If you read this far and want more medical jargon, post a comment! If you want crude jokes, or sex ed for preemies as taught by nurse BJ, post a comment, too.
Monday, May 26, 2008
Monday May 26, 2007
It is another fairly quiet day for the girls. Both girls continue to increase their feedings and are still on their caffeine. Evie had her blood transfusion today and also started on some antibiotics because they found some bacteria in her trachea. It would be nice if we could get that ET tube out, but she's not quite ready for it yet.
Mom got to kangaroo with Little Maggie today. She cried when we moved her out of her bed, it is such a tiny little cry, but so sweet to hear. But she settled down quickly and took a nice long nap. Since Evie was in the process of getting her blood, she didn't get to come out and play. The girls had a great day and were so peaceful in the evening we didn't want to bug them.
I forgot to mention that Joe and I did get to see Annie and Ryan Polk and their kids Murron and Macallan (Mac) as they were passing through Bozeman. Mac is one of those “big well ugly babies” (BWUB) as the NICU nurses refer to them – but we don’t believe they are ugly – just BIG! Mac is quite a content baby, and I did get to hold him briefly, until he decided he was hungry. Then I handed him back, because my babies aren’t quite that big, don’t cry, and I’m not sure what to do with those BWUBs yet. But it was great to get to see them (and Adam Armstrong and Shane) before they finished their 16 hour drive back to Reno. Who would have thought our kids were going to be that close in age??
Mom got to kangaroo with Little Maggie today. She cried when we moved her out of her bed, it is such a tiny little cry, but so sweet to hear. But she settled down quickly and took a nice long nap. Since Evie was in the process of getting her blood, she didn't get to come out and play. The girls had a great day and were so peaceful in the evening we didn't want to bug them.
I forgot to mention that Joe and I did get to see Annie and Ryan Polk and their kids Murron and Macallan (Mac) as they were passing through Bozeman. Mac is one of those “big well ugly babies” (BWUB) as the NICU nurses refer to them – but we don’t believe they are ugly – just BIG! Mac is quite a content baby, and I did get to hold him briefly, until he decided he was hungry. Then I handed him back, because my babies aren’t quite that big, don’t cry, and I’m not sure what to do with those BWUBs yet. But it was great to get to see them (and Adam Armstrong and Shane) before they finished their 16 hour drive back to Reno. Who would have thought our kids were going to be that close in age??
Sunday, May 25, 2008
Sunday May 25, 2008
Joe apparently has good paternal instincts, because he couldn't sleep last night after Maggie had her little spell around 9pm. So, at 11:45 pm he headed over to check on the girls. Well, Maggie had been having issues so the nurses were trying to re-intubated her. However, that didn't work, so they called Dr. Kaneta in and he determined that she didn't need the ventilator, but just needed her CPAP pressure increased. Well, that seemed to do the trick, and she calmed back down.
Both girls were doing good this morning, so Mom and Dad decided to take a 24 hour trip home (Bozeman, for those of us who forget what "home" is). The nurses are great about giving us updates when we call, so we called every few hours to see how they were doing. Maggie had another blood transfusion since she was getting low (it's almost like changing oil, poor girls - but the transfusion is about 2 teaspoons). Both girls were good on their blood gases. They tried to move Evie's ventilator minimum breaths down to 15, but she wasn't very fond of that, so she ended up back at 20 bpm. If she would have handled it, they might have taken her ventilator tube out, but I don't think she's quite up to it yet. Other than that, they had a pretty quiet day.
Joe and I had a nice trip home - glad to see the house is still standing - and how I forget how beautiful spring is with everything so green! Joe mowed the lawn (2nd trip for the new riding mower) and I gathered things for the next few weeks. The big project was painting the nursery, which I figured we might as well work on since I had all of the stuff ready to go. So, the walls are now light yellow! Next trip I'll work on hanging pictures on the walls and maybe get to curtains. I even washed baby clothes and put them on a shelf in the closet - oh so cute. It must be a "nesting" thing.
Both girls were doing good this morning, so Mom and Dad decided to take a 24 hour trip home (Bozeman, for those of us who forget what "home" is). The nurses are great about giving us updates when we call, so we called every few hours to see how they were doing. Maggie had another blood transfusion since she was getting low (it's almost like changing oil, poor girls - but the transfusion is about 2 teaspoons). Both girls were good on their blood gases. They tried to move Evie's ventilator minimum breaths down to 15, but she wasn't very fond of that, so she ended up back at 20 bpm. If she would have handled it, they might have taken her ventilator tube out, but I don't think she's quite up to it yet. Other than that, they had a pretty quiet day.
Joe and I had a nice trip home - glad to see the house is still standing - and how I forget how beautiful spring is with everything so green! Joe mowed the lawn (2nd trip for the new riding mower) and I gathered things for the next few weeks. The big project was painting the nursery, which I figured we might as well work on since I had all of the stuff ready to go. So, the walls are now light yellow! Next trip I'll work on hanging pictures on the walls and maybe get to curtains. I even washed baby clothes and put them on a shelf in the closet - oh so cute. It must be a "nesting" thing.
Saturday, May 24, 2008
Saturday May 24, 2008
Mom was quite worried about her Little Maggie on her new breathing machine, so she hurried over right after 8 am this morning. But Maggie was doing just fine! Other than trying to sneakily pull the nose prongs out as she was stretching, she had a very good night. I’m so proud. The girls also had several visitors today, as Grandma Bev, Grandpa Rich, and Great Grandma Evelyn came to town (it was much too cold and rainy at the Lake to enjoy the weekend there). The gang visited several times, but at 3 pm, Grandma Bev and Dad held Maggie and Evie, respectively. Not to say that the rest of us weren’t avidly watching. Maggie even made her first noises, I guess you could call them cries, but they seemed more like squeaks. It made Grandma Bev cry a little. Maggie took a little time to get used to her new position – and keeping her nose prongs in the right place. But eventually she settled down for a nice afternoon snuggle. Evie and Dad did wonderfully as well. After 40 minutes Rich, Evelyn, and I left the snugglers and headed out for errands. Grandma Bev really loved holding her grandbaby. The Nurses were pretty entertained by the banter between Dad and Mother-in-law.
This evening, the girls were tucked back in their beds. Maggie had a little issue when after her care, she decided to toss her hat and CPAP off and then de-saturated, but Nurse Barbara was putting her back together when we walked in. Little Miss Maggie is going to have to learn that she needs that little apparatus for the time being and she shouldn’t scare her mother like that.
Nurse Barbara did her arts and crafts last night and molded each girl’s hand out of plaster. They are truly precious and Joe is already considering having them bronzed. She also took some very cute pictures of Maggie when she was wide awake at 2am last night. I’ll have to bring in my computer and get copies of those pictures. Apparently when you watch the girls for 12 hours at a time, there are more opportunities for good pictures.
This evening, the girls were tucked back in their beds. Maggie had a little issue when after her care, she decided to toss her hat and CPAP off and then de-saturated, but Nurse Barbara was putting her back together when we walked in. Little Miss Maggie is going to have to learn that she needs that little apparatus for the time being and she shouldn’t scare her mother like that.
Nurse Barbara did her arts and crafts last night and molded each girl’s hand out of plaster. They are truly precious and Joe is already considering having them bronzed. She also took some very cute pictures of Maggie when she was wide awake at 2am last night. I’ll have to bring in my computer and get copies of those pictures. Apparently when you watch the girls for 12 hours at a time, there are more opportunities for good pictures.
Friday, May 23, 2008
Friday May 23, 2008
Maggie took a huge step forward today, which was a big surprise to her parents (and Nurses). She upgraded from her ventilator to a cpap (continues positive air pressure). The transition called for extubation (tube removal) of her ET tube and moving to nose prongs. The new device requires quite a different set-up as there is a large tube that goes to her nose and around her head and she has to wear a hat to keep it strapped on. Maggie isn’t really fond of having something stuck up her nose. She tends to try to pull it out, which unfortunately is fairly easy to do. So, the story goes that Dr. Kuneta decided after looking at her chart in the afternoon that she was ready to take that big step between ventilator minimum regulated breaths and letting her breathe on her own. He also put her back on 3 doses of Decadron to give her that little burst. The Nurses didn’t even expect that step this week, so they prepared us that she might be a little unstable. However, she did quite well! The still have the option of turning up her oxygen percentages, but otherwise, Maggie is pretty much on her own for taking breaths!
Evie is also improving, she is still riding the Decadron wave and was able to decrease her pressures and minimum breaths on the ventilator. However, her lung x-ray showed some haziness on her left side, so the positioned her mostly on her ride side all day. Both girls continue to handle their feedings well and increase how much they receive daily. They also had another day of kanga care, Evie with Mom and Maggie with Dad. It was after kanga care that they switched Maggie’s breathing apparatus – and Dad hung out and watched the production. We, of course, had great chats with the night nurses, Barbara and Kristin, after they threatened to call Child Protective Services after we didn’t show up at our usual time of 8:15 pm or so. We arrived around 9pm because we were a bit delayed on our dinner.
Evie is also improving, she is still riding the Decadron wave and was able to decrease her pressures and minimum breaths on the ventilator. However, her lung x-ray showed some haziness on her left side, so the positioned her mostly on her ride side all day. Both girls continue to handle their feedings well and increase how much they receive daily. They also had another day of kanga care, Evie with Mom and Maggie with Dad. It was after kanga care that they switched Maggie’s breathing apparatus – and Dad hung out and watched the production. We, of course, had great chats with the night nurses, Barbara and Kristin, after they threatened to call Child Protective Services after we didn’t show up at our usual time of 8:15 pm or so. We arrived around 9pm because we were a bit delayed on our dinner.
Thursday, May 22, 2008
Thursday May 22, 2008
The girls had a good day. I think that Evie’s steroids started kicking in right around the time that Dad got to hold her. Her oxygen needs went down to the 30’s and she’s been a little less picky. She was also given her leading dose of caffeine – 46mg! Thus, she was pretty wide awake this evening at 8pm. She had her eyes open and was making funny faces. Little Maggie is still on caffeine, but we haven’t seen significant impact on her breathing. They tried to lower her minimum breaths per minute to 17, but she wouldn’t stand for that, so it went back to 20. She continues to have her little apnea spells when she gets tired and doesn’t feel like breathing, so she relies on the ventilator; but that is fairly normal for preemies. Both girls increased their feeding amounts today as they are continuing to gain weight.
But the family had a nice nap during kangaroo care time. After reading Maggie a book, Mom fell asleep along with Joe and Evie. The nurses said they hushed everyone when they walked in the door “sshhh, mom and dad sleeping”. Joe finally got his poopy diapers – both girls did it on their own! So, of course, Joe had to take a picture. Not sure I’m going to post those.
But the family had a nice nap during kangaroo care time. After reading Maggie a book, Mom fell asleep along with Joe and Evie. The nurses said they hushed everyone when they walked in the door “sshhh, mom and dad sleeping”. Joe finally got his poopy diapers – both girls did it on their own! So, of course, Joe had to take a picture. Not sure I’m going to post those.
New pictures
I added new pictures to Brandy's website, so go check them out. I know it has been about a week since there were new ones, but Brandy went on early Memorial Day weekend adventures, so I had to go upload them myself. I might have some more to add later this weekend, but I'm not sure how many people want to look at poopy diapers (Joe finally got his pictures).
I'll add more about the girls later tonight after we visit them at 8pm.
I'll add more about the girls later tonight after we visit them at 8pm.
Wednesday, May 21, 2008
Wednesday May 21, 2008
Not too much was going on today. Both girls increased their feedings and were up and down on their oxygen needs. Evie started her Decadron at 2pm today and will have them every 12 hours for a total of 6 doses. However, Maggie didn’t make much progress on it until dose 5, so it will probably take a couple days. I got to “feed” Maggie – i.e. I held her syringe while the milk drained down into her tummy. Dad is on poop watch, and neither girl had bowel movements.
The girls received a wonderful package from Aunt Tedi and Auntie M (Uncle Matt). The theme was Dr. Seuss and included very cute onesies that say Thing 1 and Thing 2 and blankets, The Cat in the Hat, and Hop on Pop books, and other essentials. So, the girls got their first Dr. Seuss stories tonight!
The girls received a wonderful package from Aunt Tedi and Auntie M (Uncle Matt). The theme was Dr. Seuss and included very cute onesies that say Thing 1 and Thing 2 and blankets, The Cat in the Hat, and Hop on Pop books, and other essentials. So, the girls got their first Dr. Seuss stories tonight!
Tuesday, May 20, 2008
Tuesday May 20, 2008
The girls are pretty stable today. Evie gained another 50 grams and is up to 2 lbs 11 oz. Joe says she looks like John C. Reilly, the actor in Talledega Nights and other goofy movies.
Maggie on the other hand only gained 5 grams, and weighted in at about 970 grams (2 lbs 2oz). Both girls enjoyed kangaroo care today – for the majority of the afternoon. Dad held Maggie and Mom held Evie. You can see they are growing compared to the first time we held them. Evie almost doesn’t fit in my shirt! The girls did great during their time with Mom and Dad, but since then, Evie can’t quite decide how much she wants to breathe as her oxygen levels are really up and down. She was being a bit of a twerp tonight and making the nurses watch her and continually adjust her oxygen levels. She was also sprawled out looking like superman when we checked on her this evening. So, I snuggled her stuffed animals around her so she could have some boundaries. However, she is continuing to eat up her milk – which is up to 3cc every 3 hours.
Maggie is also eating well and moved up to over 6cc every 3 hours. Maggie also started on caffeine – kinda like her Grandma Bev and her Mountain Dew. Maggie is getting 4mg of caffeine every 12 hours. (Note: A regular can of Mountain Dew has 55mg.) The caffeine is supposed to stimulate their circulatory system which tells the brain to establish a better breathing pattern i.e. helps them breathe better. Other than that, no big changes with the girls; so, we continue to see what happens day by day.
You compare…
Maggie on the other hand only gained 5 grams, and weighted in at about 970 grams (2 lbs 2oz). Both girls enjoyed kangaroo care today – for the majority of the afternoon. Dad held Maggie and Mom held Evie. You can see they are growing compared to the first time we held them. Evie almost doesn’t fit in my shirt! The girls did great during their time with Mom and Dad, but since then, Evie can’t quite decide how much she wants to breathe as her oxygen levels are really up and down. She was being a bit of a twerp tonight and making the nurses watch her and continually adjust her oxygen levels. She was also sprawled out looking like superman when we checked on her this evening. So, I snuggled her stuffed animals around her so she could have some boundaries. However, she is continuing to eat up her milk – which is up to 3cc every 3 hours.
Maggie is also eating well and moved up to over 6cc every 3 hours. Maggie also started on caffeine – kinda like her Grandma Bev and her Mountain Dew. Maggie is getting 4mg of caffeine every 12 hours. (Note: A regular can of Mountain Dew has 55mg.) The caffeine is supposed to stimulate their circulatory system which tells the brain to establish a better breathing pattern i.e. helps them breathe better. Other than that, no big changes with the girls; so, we continue to see what happens day by day.
Monday, May 19, 2008
Monday May 19, 2008
The girls have really taken on their own personalities today. Evie is focusing her efforts on gaining weight and Maggie is focusing on her lungs. Evie looks huge today! I had noticed she was getting bigger, but she was laying on her back today and I could see that she was really chunking up. Her arms and legs are meatier and her face is bigger. She is a little puffy too, but still! Evie did have to get a new ET (endotracheal) “breathing” tube today because her old one was leaking – or the air was leaking around it. So, she got a new face bar and a bigger ET tube. So, we’ll see if that helps her lungs out, as they still need some attention. They upped her pressures a bit to see if we can get those lungs expanded. Great news though, the echocardiogram showed that Evie’s ductus was closed!! And unless she has issues with blood pressure or other evidence of ductus issues, they don’t intent on doing more echocardiograms. Evie also increased her feedings to 2.2 cc every 3 hours. Tonight Evie also moved to a bigger diaper…the old one still fit – but not when it was full! (Evie and her big diaper)
Maggie is still doing awesome with her breathing needs. She was down in the 20%’s most of the day and 21% (room air) tonight. Her feedings went up to 5.2cc every 3 hours. The neat thing about the feedings is that they replace the TPN (total parenteral nutrition) – i.e. the IV nutrients. So, when they get to full feedings (7-8cc), they can get rid of 2 IV tubes. However, they usually keep the pic line open and give small amounts of saline just in case they need the line. Maggie is also having appropriate bowel movements. I saw her diaper this morning and it was disgusting, I wasn’t quite prepared for that. Of course, Joe thought it was awesome, so he is going to be in charge of poopy diapers from here on. I think the night nurses are also keeping one for him – eww gross. (Maggie sleeping soundly)
Maggie’s echocardiogram showed that her ductus was still moderate sized. However, because it does not seem to be impacting her lung development or causing other problems now, we will just let it be. Maggie also got kanga care with Mom today. She was really good, until we put her back in her room – then she didn’t think she should breathe on her own, but eventually she settled down and was fine. Since Evie had such an eventful afternoon, we decided she would be better off resting in her room.
Maggie is still doing awesome with her breathing needs. She was down in the 20%’s most of the day and 21% (room air) tonight. Her feedings went up to 5.2cc every 3 hours. The neat thing about the feedings is that they replace the TPN (total parenteral nutrition) – i.e. the IV nutrients. So, when they get to full feedings (7-8cc), they can get rid of 2 IV tubes. However, they usually keep the pic line open and give small amounts of saline just in case they need the line. Maggie is also having appropriate bowel movements. I saw her diaper this morning and it was disgusting, I wasn’t quite prepared for that. Of course, Joe thought it was awesome, so he is going to be in charge of poopy diapers from here on. I think the night nurses are also keeping one for him – eww gross. (Maggie sleeping soundly)
Maggie’s echocardiogram showed that her ductus was still moderate sized. However, because it does not seem to be impacting her lung development or causing other problems now, we will just let it be. Maggie also got kanga care with Mom today. She was really good, until we put her back in her room – then she didn’t think she should breathe on her own, but eventually she settled down and was fine. Since Evie had such an eventful afternoon, we decided she would be better off resting in her room.
Sunday, May 18, 2008
Sunday May 18, 2008
A beautiful Sunday, of which we mostly enjoyed indoors since we’d had a good share of sun yesterday. Joe and I did kangaroo care today. Joe held Maggie for about 2 ½ hours in the afternoon and taught her about blood chemistry. She did very well and enjoyed snuggling with Daddy. I held Evie and we read nursery rhymes sent by Aunt Brandy and Uncle Zach. She did super despite being finicky the last couple of days. Both girls were awake at points and made little squeaky noises; it was quite cute. I can actually tell that they are gaining weight because they have filled out a bit and their hands are bigger!
Maggie is up to eating 4.5cc every 3 hours and had a big poop this morning. Plus, she got the IV out of her leg – so when the nurses weighed her, she hadn’t gained any weight, but figured the IV and poo made a difference (so Dad felt better). Maggie had her last dose of Decadron (corticosteroids) for this round, so we expect to see some decline, but she made really great progress the last 2 days or so. Both girls lung x-rays looked great this morning, the nurses said Evie’s looked like a different baby (much better). There’s not much more we could ask for in a weekend.
Joe visited the girls at 9pm and got a last update before bed. Maggie is being finicky – because she is coming off the Decadron. However, they did move her minimum breaths per minute down to 25 (weaning her as far as they can). Evie is now eating 1.5cc every 3 hours, but needs a little help with her bowel movements. They’re still being good little girls.
Maggie is up to eating 4.5cc every 3 hours and had a big poop this morning. Plus, she got the IV out of her leg – so when the nurses weighed her, she hadn’t gained any weight, but figured the IV and poo made a difference (so Dad felt better). Maggie had her last dose of Decadron (corticosteroids) for this round, so we expect to see some decline, but she made really great progress the last 2 days or so. Both girls lung x-rays looked great this morning, the nurses said Evie’s looked like a different baby (much better). There’s not much more we could ask for in a weekend.
Joe visited the girls at 9pm and got a last update before bed. Maggie is being finicky – because she is coming off the Decadron. However, they did move her minimum breaths per minute down to 25 (weaning her as far as they can). Evie is now eating 1.5cc every 3 hours, but needs a little help with her bowel movements. They’re still being good little girls.
Saturday, May 17, 2008
Saturday May 17, 2008
The girls had both improved from their minor issues yesterday. Both of their lungs look better and Evie’s puffiness has gone down. They were pleasantly resting on their tummies most of the day. We talked with Dr. Hiller who said that they are both doing well; however, Evie’s lungs are not quite as good as Maggie’s. Dr. Hiller didn’t think the corticosteroids were producing quite the effects that she wanted with Maggie either. However, by the end of the day, Maggie was making great progress on her ventilator needs. Her minimum breaths per minute was down to 35, her pressure was down, and her oxygen percentage was under 30% (21% is room air). Also, Maggie had great blood gases with her CO2 levels down. So, the corticosteroids seem to be helping by the end of the day. Evie’s ventilator pressure had to be increased this morning because her lungs weren’t filling completely. She also has been a bit finicky with her oxygen needs, and her blood gases were not as good. But, Evie doesn’t get the corticosteroids until Wednesday. However, she did resume her eating and had been doing very well with those every 6 hours. Maggie was eating every 3 hours and liking it as well.
It felt like summer in Missoula and the trees were anxious to start unfolding their leaves. We spent the late morning playing miniature golf with the Hoeggers – without enough shade, so we had a bit too much sun. We had a relaxing afternoon chatting and playing with Lynzee and Chloe. The Dads even went into the indoor swimming pool with the girls while the Moms went shopping J Appetizers for dinner and we were all too pooped to do much else. So, Joe and I stopped to say goodnight to our girls and headed for bed.
It felt like summer in Missoula and the trees were anxious to start unfolding their leaves. We spent the late morning playing miniature golf with the Hoeggers – without enough shade, so we had a bit too much sun. We had a relaxing afternoon chatting and playing with Lynzee and Chloe. The Dads even went into the indoor swimming pool with the girls while the Moms went shopping J Appetizers for dinner and we were all too pooped to do much else. So, Joe and I stopped to say goodnight to our girls and headed for bed.
Friday, May 16, 2008
Friday May 16, 2008
It was a gorgeous day to celebrate one’s 30th birthday. Not too much going on with the girls, just some minor adjustments. Maggie’s lung x-ray showed that one side was having a little issue, but it was due to positioning and the nurses just changed how she was sleeping during the day. Evie had puffy eyes, but that is par for the course for little ones. Dr. Hiller said as long as everything else is fine, she doesn’t get hung up on puffiness. So, the girls mostly slept. Maggie did digest all of her feedings and seems to be doing well with them. The girls did have visitors, Grandpa Paul and Grandma Diana came down for the afternoon, but the girls were too tired to show their eyes. Then John, Zena, Lynzee, and Chloe Hoegger drove into town from Duvall, Washington.
Thus, Mom and Dad had a great day. I started the morning by visiting my girls and then walking the 3 or so blocks to Starbucks for my first full leaded latte in numerous months. Then we had lunch with the Faulhaber grandparents, checked on the girls, and then Diana and I had our fingernails done. We finished the afternoon with Coca-Cola cake that Diana had made (Thank-you!). They headed home shortly before 5pm to go take care of the dogs – Bruce included. Then the Hoeggers showed up after a long drive from western Washington. We did a quick check on our girls. Unfortunately, the Hoegger girls couldn’t come into the NICU, but they could see through one of the windows, and the Nurses took Polaroid pictures for them and gave them little diapers. After expending a little energy outside in the sunshine, we headed to Mackenzie River Pizza for dinner. It took a little work to navigate through Missoula – it’s much more confusing than Bozeman. But it was so nice out we ate on the patio and the fathers “wet the babies’ heads”. So, this posting might be slightly more about the Mom, who thinks that it was a pretty fine way to spend her 30th Birthday. As long as the girls are doing good, Mom’s doing good too!
Thursday, May 15, 2008
Thursday May 15, 2008
It has been a pretty quiet day for the girls. Mom and Dad got to hold them again from 3-5pm. Evie is going to have 2 more doses of Indocin to give them her a little more help to make sure the ductus (patent ductus arteriosus) closes. Maggie started Decadron (or Dexamethasone the generic name, a corticosteroid) today to help her lungs develop. Per discussion with the Nurses, it mostly reduces inflammation, which then helps everything work better. The downside is decreased weight gain and a decline when coming off of them. But, Maggie did get her first “feeding” today (while being held by Mom, but since it goes in via feeding tube, it doesn’t really seem like much). She got 1.5cc of milk. In 6 hours, depending on how she digested, she’ll get more! Evie needs to wait until she completes her Indocin before she can resume eating.
During kangaroo care, Dad kept claiming that Evie was saying “dada”. I think that’s a bit farfetched since she doesn’t even cry yet. But Maggie got to read a wonderful book of Mother Goose nursery rhymes that her Aunt Brandy and Uncle Zach sent. Mom loves it because it is illustrated by Mary Engelbreit!
Note: I’ve added hyperlinks to WebMD on some of the medical terms in the posts that give a more detailed explanation.
During kangaroo care, Dad kept claiming that Evie was saying “dada”. I think that’s a bit farfetched since she doesn’t even cry yet. But Maggie got to read a wonderful book of Mother Goose nursery rhymes that her Aunt Brandy and Uncle Zach sent. Mom loves it because it is illustrated by Mary Engelbreit!
Note: I’ve added hyperlinks to WebMD on some of the medical terms in the posts that give a more detailed explanation.
Wednesday, May 14, 2008
Wednesday May 14, 2008
Hallelujah, both girls waived off surgery! Based on their echocardiograms at 5pm this evening, Evie's ductus was barely visible (a few pixels per Uncle Jerry), and Maggie's was small, almost tiny. So, they have been given a reprieve. We will continue to monitor their hearts as there is still a possibility the ductus could increase in size again. But Mom and Dad are very thankful that surgery isn't necessary at this time. Thanks for the prayers!!
Both Evie and Maggie got kangaroo care today. Mom held Evie and Dad held Maggie (after he got off his long conference call). The girls loved it, as did their parents. Thanks to God for another good day.
Both Evie and Maggie got kangaroo care today. Mom held Evie and Dad held Maggie (after he got off his long conference call). The girls loved it, as did their parents. Thanks to God for another good day.
Tuesday, May 13, 2008
Tuesday May 13, 2008
It was a good day for Mom and the girls. In the morning the girls were awake and Maggie was smiling and giggling at Mom and Dad. Then in the afternoon, I got to do “kangaroo care” with little Maggie – which means that I got to hold her at my chest snuggled in my shirt with a blanket wrapped around her. It was so wonderful to hold my little tiny girl. And she did so well! She kept her oxygen saturation (sats) pretty consistent – only needed 2 boosts in the 1½ hours that I held her. She pretty much just snuggled and slept. It made mom very happy. 
Joe and I did talk to the surgeon, Dr. Anne Manktelow
(Pediatric Surgery of Montana), who will perform the surgery. She walked us through the surgery and Joe asked a bunch of questions. It is a fairly simple procedure that only takes 20-30 minutes to complete. They make an incision under the armpit, separate the ribs slightly, move the lung over, and insert to titanium clips on either side of the ductus. Then they stick things up with dissolvable stitches and are done. Since Dr. Anne is the only pediatric surgeon in the state of Montana, I think we finally realize why we were sent to Missoula. The surgery is scheduled for 7:30 a.m. on Thursday morning. However, Evie has one more round of the Indocin to see if that will do the trick. Both girls have another echocardiogram on Wednesday later afternoon to make sure that the surgery is still necessary. But looking at the trend, it will likely be necessary.
In the evening, both girls were awake since the nurses had just finished their care. But, there were supposed to be going to sleep. So, we talked to them for a little bit and Maggie settled down a bit, but Evie just did not want to go to sleep. She tried all she could to keep her little eyes open. And she is so funny, no matter what the nurses do to try to keep her legs snuggled in, she kicks them out and sprawls in every directions, silly girl. So, we can already tell who is going to be the little stinker that doesn’t want to sleep.
Joe and I did talk to the surgeon, Dr. Anne Manktelow
(Pediatric Surgery of Montana), who will perform the surgery. She walked us through the surgery and Joe asked a bunch of questions. It is a fairly simple procedure that only takes 20-30 minutes to complete. They make an incision under the armpit, separate the ribs slightly, move the lung over, and insert to titanium clips on either side of the ductus. Then they stick things up with dissolvable stitches and are done. Since Dr. Anne is the only pediatric surgeon in the state of Montana, I think we finally realize why we were sent to Missoula. The surgery is scheduled for 7:30 a.m. on Thursday morning. However, Evie has one more round of the Indocin to see if that will do the trick. Both girls have another echocardiogram on Wednesday later afternoon to make sure that the surgery is still necessary. But looking at the trend, it will likely be necessary.
In the evening, both girls were awake since the nurses had just finished their care. But, there were supposed to be going to sleep. So, we talked to them for a little bit and Maggie settled down a bit, but Evie just did not want to go to sleep. She tried all she could to keep her little eyes open. And she is so funny, no matter what the nurses do to try to keep her legs snuggled in, she kicks them out and sprawls in every directions, silly girl. So, we can already tell who is going to be the little stinker that doesn’t want to sleep.
Monday, May 12, 2008
Monday May 12, 2008
It feels like today is the first dip in the rollercoaster ride. We got the results from the echocardiogram, and they weren’t what we wanted. Maggie, who has had 3 rounds of Indocin, still has a moderate sized ductus. So it is looking like they will need to do surgery – called ligation. Evie’s heart, which has had a small ductus so far, showed up as increasing in size instead of decreasing. So, they started Evie on Indocin today and will see if that will decrease the ductus. The next echocardiogram is scheduled for Tuesday afternoon. If 2 rounds of Indocin don’t provide results by Thursday, Evie will likely have the surgery at the same time. I guess their receptors are just too immature to react to the medicine.
However, Dr. Hiller said that the girls are otherwise stable and doing fairly well. So, we are thankful that there is only one problem to treat. I am reminded that at least the girls have all of their parts, and so far those parts have the ability to function as needed. When we went to visit the girls at 8:30pm, Nurse Annie had Maggie all snuggled up on her tummy in her pea pod with blankets wrapped around her and her little stuffed lamb sitting close by. It looked so comfy; Joe wanted to be snuggled up like that. Maggie did open her eyes to peak at us, but just looked so content I couldn’t bug her. Evie was a little awake, so she got a story from Mom and a lesson on heart functions from her father. We think the girls should study a bit more for their next “test”.
Joe and I took a (slow) walk through the mall and found the girls little beanie baby puppies that they can lie on. Then we had Mexican for dinner – and with $6 pitchers of Margaritas, I figured it was time to discontinue the pregnancy prohibition. Thus, the stuffed puppies are named Paco and Taco.
However, Dr. Hiller said that the girls are otherwise stable and doing fairly well. So, we are thankful that there is only one problem to treat. I am reminded that at least the girls have all of their parts, and so far those parts have the ability to function as needed. When we went to visit the girls at 8:30pm, Nurse Annie had Maggie all snuggled up on her tummy in her pea pod with blankets wrapped around her and her little stuffed lamb sitting close by. It looked so comfy; Joe wanted to be snuggled up like that. Maggie did open her eyes to peak at us, but just looked so content I couldn’t bug her. Evie was a little awake, so she got a story from Mom and a lesson on heart functions from her father. We think the girls should study a bit more for their next “test”.
Joe and I took a (slow) walk through the mall and found the girls little beanie baby puppies that they can lie on. Then we had Mexican for dinner – and with $6 pitchers of Margaritas, I figured it was time to discontinue the pregnancy prohibition. Thus, the stuffed puppies are named Paco and Taco.
Sunday, May 11, 2008
Sunday May 11, 2008
Mother’s Day
I didn’t think I would be honored by Mother’s Day this year – but the girls were so thoughtful and made cute cards for me with footprints and pictures. Ok, maybe they had help from their nurses, but it was a nice surprise on Sunday morning. The girls were quietly sleeping under their bili-lites, but we hung out for a little while and chatted with Dr. Kaneta (the other neonatologist). He said the girls were still doing well, they adjusted their minimum breaths per minute for Evie, which had been higher since she had started “eating”. Oh, and Evie is eating every 3 hours versus 6 hours. She is handling it fairly well, had a little residual leftover, but filled her diaper this morning! (Aunt Christie will be proud – ew gross) Their bilirubin went down (good), but they are going to keep them under their lights for another day to see if they can keep the trend.
I didn’t think I would be honored by Mother’s Day this year – but the girls were so thoughtful and made cute cards for me with footprints and pictures. Ok, maybe they had help from their nurses, but it was a nice surprise on Sunday morning. The girls were quietly sleeping under their bili-lites, but we hung out for a little while and chatted with Dr. Kaneta (the other neonatologist). He said the girls were still doing well, they adjusted their minimum breaths per minute for Evie, which had been higher since she had started “eating”. Oh, and Evie is eating every 3 hours versus 6 hours. She is handling it fairly well, had a little residual leftover, but filled her diaper this morning! (Aunt Christie will be proud – ew gross) Their bilirubin went down (good), but they are going to keep them under their lights for another day to see if they can keep the trend.
Saturday, May 10, 2008
Saturday May 10, 2008
Joe and I made a much needed drive back to Bozeman to make sure our house was still standing, spend a night at home, do laundry, and pick up supplies. Thus why I haven’t posted in a little over a day. But we did call to check on the girls. Friday afternoon we got the results of Maggie’s echocardiogram, and her ductus had gone from moderate to small – great news! They did decide to do the 3rd round of endocin and see if they can keep making progress. So, the girls have had a few fussy days – just needing to adjust their oxygen and suction their lungs. But of all the things that could go wrong, being fussy isn’t a big deal.
On Saturday afternoon, both girls had to have their pic lines adjusted because the lung x-rays showed that the lines had moved. (Pic lines run start in the right arm and run through a vein all the way to the midline of the body (practically the heart.) Once the pic lines are set, they don’t usually move, so it is strange that both girls’ had to be adjusted on Friday and Saturday. But they’ll just watch them and make sure things are ok. Both girls are still under their Olympic Bili-Lite (Olympic is the brand, but I think it is funny – because they are really big lights) for their jaundice. Mom and Dad visited again on Saturday night and read stories about bunnies to the girls (thanks to books borrowed from Joani). Maggie was on her tummy again, and the nurses say that she does quite well like that. Since the girls were asleep, we had great chats with the nurses. Nurse Annie, taking care of Maggie, is also a traveling nurse originally from Wisconsin. Joe and I are quite impressed with these gals as they have such extensive and varied experience that they bring best practices; plus they’re great gals to chat with.
On Saturday afternoon, both girls had to have their pic lines adjusted because the lung x-rays showed that the lines had moved. (Pic lines run start in the right arm and run through a vein all the way to the midline of the body (practically the heart.) Once the pic lines are set, they don’t usually move, so it is strange that both girls’ had to be adjusted on Friday and Saturday. But they’ll just watch them and make sure things are ok. Both girls are still under their Olympic Bili-Lite (Olympic is the brand, but I think it is funny – because they are really big lights) for their jaundice. Mom and Dad visited again on Saturday night and read stories about bunnies to the girls (thanks to books borrowed from Joani). Maggie was on her tummy again, and the nurses say that she does quite well like that. Since the girls were asleep, we had great chats with the nurses. Nurse Annie, taking care of Maggie, is also a traveling nurse originally from Wisconsin. Joe and I are quite impressed with these gals as they have such extensive and varied experience that they bring best practices; plus they’re great gals to chat with.
Friday, May 9, 2008
Friday May 9, 2008
The girls had another good night and Evie was resting peacefully at 8:30am. Maggie was wide awake with her billy light on and was getting her morning check-up. She weighed in at 830 grams – a moderate increase of 6 grams, but considering she isn’t eating yet, any increase is welcome. Dad got to assist in some ‘oral hygiene’ (cleaning out her mouth, she’s a bit of a drooler, but who wouldn’t be with tubes stuck in your mouth). She was looking around quite a bit this morning. But the exciting thing is that she got repositioned on her tummy. This helps them breathe and digest a little easier, but looks a little funny. It was quite the ordeal and will take a little for Maggie to get used to, but the nurses think it is great for them. Mom’s job is to go find a little stuffed animal for them to lie on! 
At Evie’s weigh in this morning, she gained about 21 grams!
Thursday, May 8, 2008
Thursday May 8, 2008 Part II
At 2pm, Evie had eaten 1cc of milk. Ok, not really eaten, they put 1.2cc in her tummy, then sucked out anything remaining 6 hours later. I.e. she digested 1cc. Then at her 8pm check, she had eaten all 1.2 cc. Go girl!
Maggie’s arterial line in her umbilical cord was “sluggish” so they had to remove it and replace it with an IV in her right leg.
They usually try to keep it in a bit longer so they can do blood gas checks and monitor their blood pressure, as well as IV stuff (that Joe refers to as Baby Gatorade – it looks about that color). So, that one line is replaced by 3 different devices, which is a little hard to see. But then again, there are benefits of having the umbilical lines out. The first being that Mom will get to hold her tiny baby soon – called kangaroo care. Nurse Ann dangled that in front of me last night after 9pm, but I was way too tired because I’d had a big night grocery shopping. I was more than willing, but not quite able. Hopefully we’ll do that in the next couple days. The second benefit is that Maggie gets to lay on her tummy. 
Nurse Barbara, a traveling nurse originally from South Africa, was taking care of Evie during the night shift. She said that Evie was quite delightful – she’d taken care of her the night before – and that tonight she could have a bow in her hair. So, Nurse Barbara brought out a bag of very tiny little bows and we put a cream colored bow in Evie’s hair. Too cute!
Maggie’s arterial line in her umbilical cord was “sluggish” so they had to remove it and replace it with an IV in her right leg.
They usually try to keep it in a bit longer so they can do blood gas checks and monitor their blood pressure, as well as IV stuff (that Joe refers to as Baby Gatorade – it looks about that color). So, that one line is replaced by 3 different devices, which is a little hard to see. But then again, there are benefits of having the umbilical lines out. The first being that Mom will get to hold her tiny baby soon – called kangaroo care. Nurse Ann dangled that in front of me last night after 9pm, but I was way too tired because I’d had a big night grocery shopping. I was more than willing, but not quite able. Hopefully we’ll do that in the next couple days. The second benefit is that Maggie gets to lay on her tummy. 
Nurse Barbara, a traveling nurse originally from South Africa, was taking care of Evie during the night shift. She said that Evie was quite delightful – she’d taken care of her the night before – and that tonight she could have a bow in her hair. So, Nurse Barbara brought out a bag of very tiny little bows and we put a cream colored bow in Evie’s hair. Too cute!
Thursday May 8, 2008
The girls are one week old today. They are snuggled in their cozy incubators with “pea pods” around them instead of their cocoons. They seem to like it, and are quite cute. They got head ultrasounds this morning at 9am with great news – no bloodclots! So, one week with clear brain scans is a milestone achievement as the risk of clots forming decreases after one week. So that is a great relief – go girls! We talked to Dr. Hiller regarding their ductus. Evie’s is doing great, Maggie’s is still worrisome as the blood flow could be moving in the opposite direction. So, they will try one more round of medicine to see if that will work. However, the medicine may not react because the receptors are still immature as well. That would lead us to surgery, but not for another several days. They want to wait until Maggie is at least 10 days old as she will be able to handle it better then. Maggie did open her eyes and look at Mom, Dad, and Nurse Mary. She had her little hat off since she was soaking up the humidity and constant heat, but it was hard to see as it is so dark in her little room. We’ll try to get better pictures later. Mom changed her diaper – a little more difficult from the side instead of having all the space above her – but it was a full diaper! The girls were also weighed today (as best one can weigh with all the equipment). Evie weighed 835grams (29.5oz = 1 lb 13.5oz) – Dad called her beefcake. But that’s great. She even had a little food in the wee hours of the morning, but didn’t digest it. So, they sucked it out and gave her new. We’ll see how she does with that. Maggie weighted 824 grams (29oz = 1 lb 13oz), which is just about her birth weight. But one would expect them to lose a little weight at the beginning, so she should be on the upward climb. She is still struggling a bit with her breathing up to minimum 50 bpm – but the Dr. said that it is still fine.
Wednesday, May 7, 2008
Wednesday May 7, 2008
Today was an eventful day for the girls. They got their echograms (heart scans) to determine progress of their ductus (the heart bypass). Evie’s got a little smaller, but there wasn’t much change in Maggie’s. They are going to wait before giving Maggie another dose of endocin. Then they got their pic lines (IV through the arm) and took out the veinous lines in their umbilical cords. Then they moved up to 11D (dextrose) in their IV’s. Finally, they moved the girls to their isolets / incubators. They are actually called Giraffe incubators and have cute little covers with giraffes on them. Momma got to carry Maggie from her old bed to her new room at “Hilton” (as nurse Patti refers to it). Evie got moved a little later on in the evening. Maggie was having some issues breathing on her own, so they had to increase her minimum breaths per minute to 40. It had been at 30 bpm for several days. Nurse Patti thinks she is just tired. We’ll check on her tomorrow. But those are two upgrades in one day. The incubators regulate temperature better, are quieter and darker, and have humidity control. So, they should be more content in their new homes. Maggie did open her eyes for a second to see Nurse Patti, but decided it was too scary out there. The girls do like sucking on their pacifiers – or their fists.
Dad worked all day, including conference calls all afternoon. Mom did laundry, cleaned sinks, tidied the room, and worked a little. We are trying to get into a schedule – but since we still haven’t made it to the grocery store, we haven’t quite gotten into a groove. We did have an unexpected visitor, Jeff Grier, a friend of Carol Raymond. It was nice to have someone in town to chat with. Hopefully Joe can have a fishing buddy in a couple weeks.
Maggie's old bed:
Dad worked all day, including conference calls all afternoon. Mom did laundry, cleaned sinks, tidied the room, and worked a little. We are trying to get into a schedule – but since we still haven’t made it to the grocery store, we haven’t quite gotten into a groove. We did have an unexpected visitor, Jeff Grier, a friend of Carol Raymond. It was nice to have someone in town to chat with. Hopefully Joe can have a fishing buddy in a couple weeks.
Maggie's old bed:
Evie's new bed (both girls' beds are pretty much the same):
Tuesday, May 6, 2008
Tuesday May 6, 2008
Today was another good day for the girls. Not really any changes other than Evie got her minimum breaths per minutes decreased from 40bpm to 35bpm. Dr. Hiller talked to us about putting in a pic lines through their arms. This is more sterile and is slightly further from their hearts than the umbilical cord line. This line can stay in for several weeks, so it is a step forward. Joe and I had a slow morning, just couldn’t seem to get out of bed, so we didn’t get to the girls until 11am. But I did get a full 6 hours of uninterrupted sleep – ahhhh. We did get to the girls at 2pm to change diapers and put our hands over them for a fair bit of time. But neither opened their eyes. No more aquaphor needs to be put on them, but I think they are starting to look a bit dry, especially since they still have their lights shining on them.
Joe and I both talked to our bosses at 11am. I’m still trying to figure out how I can continue to be useful for work – but they are going to have to have some help since I can’t be there to do everyday tasks. But it sounds like they are willing to have me work on projects – like testing the new system. So, hopefully I can work hourly and maybe be half time – remotely. I feel like such a drain. Joe tried to get work done during the day, but taking care of me and getting us to the girls, and trying to make sure we had food, caused many interruptions in his day. I am in trouble with Joe, because after coming back from the girls at 11am or so, I walked into the Ronald McDonald house and stopped at the counter to ask a question and very suddenly felt faint. I told Joe that I needed to sit down, and then I started quickly walking to the couch. Unfortunately, my head and feet didn’t quite correspond and I tripped and fell and took Joe down to the floor with me, we both got a little rug burn. Who knows why I didn’t just sit where I was, I just thought I needed to get to a chair. So, apparently I’m still not stable – which drives me nuts. But I did sit much of the day and completed a little project for work. That combined with some fresh air, a drive around Missoula, dinner, and story time with my girls, I am feeling much better tonight. I read the girls their first story, “Bear Snores On” tonight. I think they liked it.
Joe and I both talked to our bosses at 11am. I’m still trying to figure out how I can continue to be useful for work – but they are going to have to have some help since I can’t be there to do everyday tasks. But it sounds like they are willing to have me work on projects – like testing the new system. So, hopefully I can work hourly and maybe be half time – remotely. I feel like such a drain. Joe tried to get work done during the day, but taking care of me and getting us to the girls, and trying to make sure we had food, caused many interruptions in his day. I am in trouble with Joe, because after coming back from the girls at 11am or so, I walked into the Ronald McDonald house and stopped at the counter to ask a question and very suddenly felt faint. I told Joe that I needed to sit down, and then I started quickly walking to the couch. Unfortunately, my head and feet didn’t quite correspond and I tripped and fell and took Joe down to the floor with me, we both got a little rug burn. Who knows why I didn’t just sit where I was, I just thought I needed to get to a chair. So, apparently I’m still not stable – which drives me nuts. But I did sit much of the day and completed a little project for work. That combined with some fresh air, a drive around Missoula, dinner, and story time with my girls, I am feeling much better tonight. I read the girls their first story, “Bear Snores On” tonight. I think they liked it.
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