Well, today we received word that Cameron still has the staph infection. Her blood cultures have come back positive - Again! I don't know why but today that news really hit kind of hard...I think that the lack of being able to see the girls is beginning to take its toll and hearing that one of them is still sick is killing me. To top it all off I got the official word that I am not allowed in the NICU until 7 days after the last person in our house is contagious. So that means at the earliest I will be able to go and see the girls next Sunday...if Aubrey continues to do well. Sorry I don't mean to sound like I am having a pity party for myself (even though I kind of am!). I am willing to make the sacrifice if it means keeping them well.
Cameron's nurse told me last night that her cheeks are getting chubby (she must take after me). She also said that last Saturday when she gave her a bath she put her in a dress and took her picture! She is supposed to email the picture to me and I have been waiting on pins and needles to see it! I miss seeing them so much! Even though she still has the infection, she is doing great on the cpap, handling the food they are giving her, and her body is doing all that it is supposed to be doing.
Reagan's doctors and nurses have decided to try her again off of the nasal cannula in a couple of days. They don't want to continually stress her out day after day so they try to build in some rest time. She is handling the food well so far and has learned that she likes the pacifier - you should see how small, it is like they are made for baby dolls! Her nurse said that she and one of Reagan's other primaries were laughing at her because they would step away after just getting Reagan situated in her incubator and then they would see her lift herself up on all fours and catapult herself forward. They are convinced that she is determined to come out of the NICU crawling already!
The nurses have been so great about reassuring me and telling the girls that we love them for us. I also have to say that when I heard that the girls' nurses were calling when they were off of work to check on the girls that it brought tears to this Mom's eyes because I know that they are also loved by the nurses that work with them. We have so much to be thankful for including the fact that Aubrey is finally starting to act like herself again - In fact, a friend sent us some Preemie clothes that her daughters have outgrown and she is sitting in a pile of them after just turning the box upside down!
Saturday, January 31, 2009
Friday, January 30, 2009
Can't think of any new titles so....Update
Well, Cameron was able to be fed one more time and then she quit going to the bathroom. So, they had to take her off of food and back on dopamine for renal function. They did a full blood workup and ran blood cultures again just to be on the safe side. As of early this morning she was using the bathroom normally and her nurse was hopeful they would take her off the dopamine and then she would be able to resume eating today. I will be calling today after 11 or so but we are taking Aubrey to the doctor today because she is still having tummy troubles.
Reagan's brain scan turned out fine and she is still doing well. I asked her nurse about her nasal cannula use and she said that Reagan is doing so well they may actually begin trialing her with just room air on her own in the near future. Both girls are on room air - not requiring any oxygen. They will both also be screened by the opthamologist next week again for their eyes.
Cameron is being fed throughout the weekend. They have taken her off of her medicine and she is doing all that she is supposed to. They will leave her on the cpap for the weekend so she can focus on eating more. Reagan was taken off of the nasal cannula this afternoon. She stayed off and did well regulating her own breathing for 30 minutes and then started to desat so they placed her back on the cannula. They probably won't try to take her off again for a while since she couldn't maintain her own saturation for a long extended period of time. That's fine with me, I don't want her to work any harder than she has to because she needs to save those calories to gain weight!
Reagan's brain scan turned out fine and she is still doing well. I asked her nurse about her nasal cannula use and she said that Reagan is doing so well they may actually begin trialing her with just room air on her own in the near future. Both girls are on room air - not requiring any oxygen. They will both also be screened by the opthamologist next week again for their eyes.
Cameron is being fed throughout the weekend. They have taken her off of her medicine and she is doing all that she is supposed to. They will leave her on the cpap for the weekend so she can focus on eating more. Reagan was taken off of the nasal cannula this afternoon. She stayed off and did well regulating her own breathing for 30 minutes and then started to desat so they placed her back on the cannula. They probably won't try to take her off again for a while since she couldn't maintain her own saturation for a long extended period of time. That's fine with me, I don't want her to work any harder than she has to because she needs to save those calories to gain weight!
Thursday, January 29, 2009
Tests
Well, last night I called the NICU - actually it was 3 am this morning and Cameron's nurse was so sweet - she said "I was so worried about you! I thought for sure that you must be sick because I hadn't heard from you!" I told her that I had just fallen asleep by accident and that is why I did not call. She shared that after Cameron ate that she suctioned her out and it was bloody. So, they did a belly x-ray and it looked good. Then, they decided to give her Zantac. She mentioned that when a baby goes as long as Cameron has without food sometimes their stomachs can get an ulcer or get irritated from all the stomach acids. They had to put the replogle back in and take her off of feeds and reevaluate this morning. This morning they have decided to go ahead and continue her on zantac but to start her back on her food. They will continue to watch her but her belly looks great and she is doing well. Reagan had her head ultrasound this morning and the results are still not back yet. She is on full feeds now and they are starting back with adding the Human Milk Factor. Both girls eyes are not showing signs of retinopothy and they are showing normal exams for premature babies (so not what a full term baby's eyes would look like but normal for their gestational age). They will continue to get eye exams routinely now to check for any changes.
Still sick at the Carter house but hopefully we are nearing the end!
Still sick at the Carter house but hopefully we are nearing the end!
Wednesday, January 28, 2009
The Plague
Yes, that is what I call this virus that has taken over our house - the plague. It is HORRIBLE! First Aubrey, then Seth. I pray that I am not next. For those of you who know what a complete germaphobe I have become since the girls have gone into the NICU...you can imagine what this has done to me. I cannot clean enough - it is frightening! The official word from the doctor is that this bug that they both have can take up to 7 to 10 days to completely go away and even then they are still contagious for another 24 hours after their last symptom. And it can take up to a week or so for it to show up if you have it - so it looks as if our family is pretty much been quarentined to our house for a while because trust me...nobody wants the plague!
As you can guess, that also puts us out of the NICU. It is driving me crazy how much sickness has been a part of our lives lately. It must be due to lack of sleep making our immune systems weak. I don't know but I have had it! My girls are getting to be more and more fun with each day and I am missing it. But I know that the alternative is that they could get this junk - which I would never want to happen.
Since I can't go we are relying on the phone updates which have been kind of sparse - I am taking this as a good thing because when the doctors are calling you - it ain't good! The girls both had their eyes checked yesterday and, as of last night, the reports were still not in the computer. I have called today but was on hold for almost 20 minutes so I decided to call back later. Reagan had to have a blood transfusion yesterday because her hermatocrit was low again and they attributed that to some of her bradys and desats. She is still doing well on the nasal cannula. She did not have her head ultrasound on Tuesday, it was rescheduled for Thursday. I pray that it will be negative. Cameron is still doing well. They are watching her closely as she is eating. Last night her nurse mentioned that she had some food still leftover after her feed so they were watching her with the food to be sure that everything is doing what it is supposed to. If not, then I think they will stop feeds for a while (again). I think that is it. I will keep you posted.
Before I leave I wanted to share with you this story that Seth's Aunt Jane sent me today. It brought tears to me eyes but the good kind. I pray that my girls will also have such a knowing and precious love of the Savior and how He has been with them all this time as well. Here it is (have tissues ready!):
A doctor walked into the small hospital room of Diana Blessing. She was still groggy from surgery. Her husband, David, held her hand as they braced themselves for the latest news. That afternoon complications had forced Diana, only 24-weeks pregnant, to undergo an emergency Cesarean to deliver the couple's new daughter, Dana Lu Blessing. At 12 inches long and weighing only one pound nine ounces, they already knew she was perilously premature... She and David, with their 5-year-old son Dustin, had long dreamed of the day they would have a daughter to become a family of four.
Because Dana's underdeveloped nervous system was essentially 'raw', the lightest kiss or caress only intensified her discomfort, so they couldn't even cradle their tiny baby girl against their chests to offer the strength of their love. All they could do, as Dana struggled alone beneath the ultraviolet light in the tangle of tubes and wires, was to pray that God would stay close to their precious little girl.
There was never a moment when Dana suddenly grew stronger. But as the weeks went by, she did slowly gain an ounce of weight here and an ounce of strength there. At last, when Dana turned two months old, her parents were able to hold her in their arms for the very first time.
Five years later, Dana was a petite but feisty young girl with glittering gray eyes and an unquenchable zest for life. Simply, she was everything a little girl can be and more. But that happy ending is far from the end of her story. One blistering afternoon in the summer of 1996 near her home in Irving , Texas , Dana was sitting in her mother's lap in the bleachers of a local ball park where her brother Dustin's baseball team was practicing. As always, Dana was chattering nonstop with her mother and several other adults sitting nearby when she suddenly fell silent. Hugging her arms across her chest, little Dana asked, 'Do you smell that?'
Smelling the air and detecting the approach of a thunderstorm, Diana replied, 'Yes, it smells like rain.'
Dana closed her eyes and again asked, 'Do you smell that?'
Once again, her mother replied, 'Yes, I think we're about to get wet. It smells like rain.'
Still caught in the moment, Dana shook her head, patted her thin shoulders with her small hands and loudly announced, 'No, it smells like Him. It smells like God when you lay your head on His chest.'
Tears blurred Diana's eyes as Dana happily hopped down to play with the other children.
Before the rains came, her daughter's words confirmed what Diana and all the members of the extended Blessing family had known, at least in their hearts, all along. During those long days and nights of her first two months of her life, when her nerves were too sensitive for them to touch her, God was holding Dana on His chest and it is His loving scent that she remembers so well.
As you can guess, that also puts us out of the NICU. It is driving me crazy how much sickness has been a part of our lives lately. It must be due to lack of sleep making our immune systems weak. I don't know but I have had it! My girls are getting to be more and more fun with each day and I am missing it. But I know that the alternative is that they could get this junk - which I would never want to happen.
Since I can't go we are relying on the phone updates which have been kind of sparse - I am taking this as a good thing because when the doctors are calling you - it ain't good! The girls both had their eyes checked yesterday and, as of last night, the reports were still not in the computer. I have called today but was on hold for almost 20 minutes so I decided to call back later. Reagan had to have a blood transfusion yesterday because her hermatocrit was low again and they attributed that to some of her bradys and desats. She is still doing well on the nasal cannula. She did not have her head ultrasound on Tuesday, it was rescheduled for Thursday. I pray that it will be negative. Cameron is still doing well. They are watching her closely as she is eating. Last night her nurse mentioned that she had some food still leftover after her feed so they were watching her with the food to be sure that everything is doing what it is supposed to. If not, then I think they will stop feeds for a while (again). I think that is it. I will keep you posted.
Before I leave I wanted to share with you this story that Seth's Aunt Jane sent me today. It brought tears to me eyes but the good kind. I pray that my girls will also have such a knowing and precious love of the Savior and how He has been with them all this time as well. Here it is (have tissues ready!):
A doctor walked into the small hospital room of Diana Blessing. She was still groggy from surgery. Her husband, David, held her hand as they braced themselves for the latest news. That afternoon complications had forced Diana, only 24-weeks pregnant, to undergo an emergency Cesarean to deliver the couple's new daughter, Dana Lu Blessing. At 12 inches long and weighing only one pound nine ounces, they already knew she was perilously premature... She and David, with their 5-year-old son Dustin, had long dreamed of the day they would have a daughter to become a family of four.
Because Dana's underdeveloped nervous system was essentially 'raw', the lightest kiss or caress only intensified her discomfort, so they couldn't even cradle their tiny baby girl against their chests to offer the strength of their love. All they could do, as Dana struggled alone beneath the ultraviolet light in the tangle of tubes and wires, was to pray that God would stay close to their precious little girl.
There was never a moment when Dana suddenly grew stronger. But as the weeks went by, she did slowly gain an ounce of weight here and an ounce of strength there. At last, when Dana turned two months old, her parents were able to hold her in their arms for the very first time.
Five years later, Dana was a petite but feisty young girl with glittering gray eyes and an unquenchable zest for life. Simply, she was everything a little girl can be and more. But that happy ending is far from the end of her story. One blistering afternoon in the summer of 1996 near her home in Irving , Texas , Dana was sitting in her mother's lap in the bleachers of a local ball park where her brother Dustin's baseball team was practicing. As always, Dana was chattering nonstop with her mother and several other adults sitting nearby when she suddenly fell silent. Hugging her arms across her chest, little Dana asked, 'Do you smell that?'
Smelling the air and detecting the approach of a thunderstorm, Diana replied, 'Yes, it smells like rain.'
Dana closed her eyes and again asked, 'Do you smell that?'
Once again, her mother replied, 'Yes, I think we're about to get wet. It smells like rain.'
Still caught in the moment, Dana shook her head, patted her thin shoulders with her small hands and loudly announced, 'No, it smells like Him. It smells like God when you lay your head on His chest.'
Tears blurred Diana's eyes as Dana happily hopped down to play with the other children.
Before the rains came, her daughter's words confirmed what Diana and all the members of the extended Blessing family had known, at least in their hearts, all along. During those long days and nights of her first two months of her life, when her nerves were too sensitive for them to touch her, God was holding Dana on His chest and it is His loving scent that she remembers so well.
Monday, January 26, 2009
On the Mend
Well, today Aubrey stayed at home with Mommy and Daddy to mend (and spent the morning with the Johnsons). So, far no more sickness since late last night. Unfortunately, it looks like Seth may be battling the gunk now. I, however, am chomping at the bit to get up to the NICU so I am praying that if I can get enough sleep maybe I can avoid it!
We called to check on the girls and Reagan is still being fed and really enjoys being on the nasal cannula. Cameron is also on the cannula today due to irritation on her forehead from the cpap. AND they have decided to try and feed Cameron tonight - just a tad to see how she is doing! Her blood cultures are still running negative but she will remain on the antibiotics for the staph for probably about another week. Her belly x-rays are still not what they would call "normal" but they are still improving daily and if her day continued to go well then they were going to try and feed her.
Praise the Lord! I would love so much for both of my girls to be working on feeding and growing for a while instead of fighting infection! Reagan is scheduled for her head ultrasound tomorrow - please pray that we are still clear for brain bleeds.
We called to check on the girls and Reagan is still being fed and really enjoys being on the nasal cannula. Cameron is also on the cannula today due to irritation on her forehead from the cpap. AND they have decided to try and feed Cameron tonight - just a tad to see how she is doing! Her blood cultures are still running negative but she will remain on the antibiotics for the staph for probably about another week. Her belly x-rays are still not what they would call "normal" but they are still improving daily and if her day continued to go well then they were going to try and feed her.
Praise the Lord! I would love so much for both of my girls to be working on feeding and growing for a while instead of fighting infection! Reagan is scheduled for her head ultrasound tomorrow - please pray that we are still clear for brain bleeds.
Sunday, January 25, 2009
Sunday Update
I woke up this morning so excited about going to see the girls after such a great day today...only to have a surprise get in the way of our visit...today at lunch (at a restaurant) Aubrey got sick all over me - yes I still feel so sorry for the waitress that we had because we had to jump up at run and get Aubrey and I both home for baths and leave her with the mess and our friends with the check (we owe them big time). Seth and I were joking about how we are in uncharted territory because Aubrey has never been sick with tummy troubles - I know we have a lot to be thankful for. So, anyway, Mommy duty at home prevails today and we just called to check on the girls today.
Reagan is getting her food increased today and is still doing well on her nasal cannula. Cameron is doing well - her x-ray looked a little better but still distended but the course of treatment is still the same. All in all they are behaving well today the nurse practitioner said. And as long as I am not feeling sick, I am not banned just have to watch closely and see how I feel tomorrow.
Reagan is getting her food increased today and is still doing well on her nasal cannula. Cameron is doing well - her x-ray looked a little better but still distended but the course of treatment is still the same. All in all they are behaving well today the nurse practitioner said. And as long as I am not feeling sick, I am not banned just have to watch closely and see how I feel tomorrow.
Saturday, January 24, 2009
Kangaroo Care With Daddy
Here is Cameron napping with Daddy and the second picture is of how she posed the whole time - almost an hour! Right now her skin is looking yellow because of the IV fluids that they are giving her for her food - once she starts on milk it should start to go away.
This is Reagan on her Daddy's chest! She kept her eyes wide open staring at her Daddy in the mask and then his beard most of her time with him. Towards the end she started to get really calm and started to fall asleep. She loved being with her Daddy so much you should have heard her start to cry when the nurse took her off. She was very sad - but it was time for us to head home and time for Reagan to begin getting her food again!
Well, the girls are most definitely Daddy's girls - they love their Daddy holding them! They both got to take naps on Daddy for an hour a piece today and they loved it - their oxygen saturation was higher and they were much calmer. Cameron and Daddy both took naps for an hour together. While they were sleeping Reagan was wiggling like crazy trying to get Daddy's attention for herself and kept moving her cpap all around! When Daddy finally got to hold her she just curled up and calmed down right on Daddy's chest! I had the best time watching Seth bond with his girls - it was almost as if it was me. So, I got to visit with the sister that was not being held and also was the photographer. We stayed for over 5 hours today - it was great!
Not only did the girls get to kangaroo today but both got encouraging reports. Cameron is no longer diagnosed with medical NEC. They are still seeing abnormal belly x-rays but there is no pneumatosis and so they are not calling it that anymore. They are still giving her antibiotics and will take another x-ray tomorrow morning. So, altogether the report is no different than last night - they are just calling it something else I guess. But I have to admit it still makes me feel better that they are no longer calling it NEC. As you can see things change like the wind but I am thankful for what I know right now and pray that things will continue to get better. They have decided to place Cameron back on cpap altogether (not because she deteriorated). They said that they only placed her on the cannula to give her head a break from the cpap mask that she has to wear - she was getting irritated. So, now that she has had a little break they are back on cpap full force. Last night Cameron weighed 1 lb. 12 ounces.
As of today Reagan is off of antibiotics and they are beginning to feed her once again. They also placed her on the nasal cannula today and she seemed to like it. All morning they had been weaningg her down on her cpap a level to see how she would do...Well, she was quite the active baby and the nurse said that she would venture to say that the cpap spent just as much time off of Reagan's face as it did on her face. So, Seth and I were able to be there for the event and then she was placed on Seth. They were hopeful that with the cpap off of her face (which is what she seemed determined to do on her own with all of her wiggling) that she maybe would calm down a bit and rest - which would also help her to gain some weight. The nurse practitioner said that they are starting Reagan over with milk with no additives and then they will proceed slowly. If all goes well, Reagan could be back on full feeds by mid-week. I pray that she will continue to be strong enough for the nasal cannula and that she would also get some rest so that her body can use that energy to grow. Today she wiggled so much, she kept wiggling right out of her diaper! Last night Reagan weighed 1 lb. 13 ounces.
Not only did the girls get to kangaroo today but both got encouraging reports. Cameron is no longer diagnosed with medical NEC. They are still seeing abnormal belly x-rays but there is no pneumatosis and so they are not calling it that anymore. They are still giving her antibiotics and will take another x-ray tomorrow morning. So, altogether the report is no different than last night - they are just calling it something else I guess. But I have to admit it still makes me feel better that they are no longer calling it NEC. As you can see things change like the wind but I am thankful for what I know right now and pray that things will continue to get better. They have decided to place Cameron back on cpap altogether (not because she deteriorated). They said that they only placed her on the cannula to give her head a break from the cpap mask that she has to wear - she was getting irritated. So, now that she has had a little break they are back on cpap full force. Last night Cameron weighed 1 lb. 12 ounces.
As of today Reagan is off of antibiotics and they are beginning to feed her once again. They also placed her on the nasal cannula today and she seemed to like it. All morning they had been weaningg her down on her cpap a level to see how she would do...Well, she was quite the active baby and the nurse said that she would venture to say that the cpap spent just as much time off of Reagan's face as it did on her face. So, Seth and I were able to be there for the event and then she was placed on Seth. They were hopeful that with the cpap off of her face (which is what she seemed determined to do on her own with all of her wiggling) that she maybe would calm down a bit and rest - which would also help her to gain some weight. The nurse practitioner said that they are starting Reagan over with milk with no additives and then they will proceed slowly. If all goes well, Reagan could be back on full feeds by mid-week. I pray that she will continue to be strong enough for the nasal cannula and that she would also get some rest so that her body can use that energy to grow. Today she wiggled so much, she kept wiggling right out of her diaper! Last night Reagan weighed 1 lb. 13 ounces.
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