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.
Friday, January 23, 2009
Day by Day...No Hour by Hour
Well, we went to visit the girls tonight and I was expecting to go and pretty much cry the whole time (as I had done since the doctor called from the NICU earlier in the afternoon). But God gave me strength and the joy of seeing my girls overcame me. I love them so much and I love seeing them and seeing how much they grow and change. And even though they are not weight wise much bigger they did seem bigger today to me. In fact, Cameron didn't even look like my daughter. They had taped one of her tubes to her chin and it squished her cheeks together and she was covered with the cpap and I even joked with her nurse that I wasn't sure if she was my kid - that is how different she looked. But, then the respiratory therapist came and took her off the cpap and placed her on the nasal cannula and I got to see her face and staring right back at me was a miniature version of Seth Carter - just with chubbier cheeks! When the therapist took her off of the cpap she even was breathing room air on her own for a minute long enough for Mommy and Papa to take a picture of her beautiful face (to be posted later...it is a little late and I am exhausted!)
Seth got to spend some good time with Reagan touching and talking with her. She was wide eyed and busy tonight. She had already pulled her cpap off of her face several times within one hour - she is going to keep the girls' nurse busy. My mom (Mimi) got to touch Reagan and soothe her for the first time - it was a beautiful moment. One I hope will be repeated often - my girls getting to bond with their grandparents and parents.
As I was visiting with Cameron and her nurse, the doctor came in to speak with me about Cameron. I assumed that he was just going to reiterate what I had been told already - not so. He said that he needed to give me the update on her most recent x-ray - it was looking better. He said that the gas in her belly was moving - which is good they want to see that and that both he and the fellow (or the attending ) for the radiologist looked and did not see pneumatosis - but that the actual radiology report back would not be until in the morning.
So, that being said here is what we know about Cameron - still being treated for NEC (medical NEC) and on lots of antibiotics, had blood cultures taken today to check for staph, doing well clinically (respiratory wise, blood pressure, etc.), as of right now the plan is for her to not be fed for ten days (as is typical with NEC). One thing I do know is that the pneumatosis can show up quickly, one night ago there was no pneumatosis and then this morning it showed up. So, I pray that all the rest of her x-rays can continue to come back better and she can finally shake this thing and that the staph is out of her system so she is not having to fight two bugs at once.
Reagan - blood cultures still running negative, belly x-rays still looking abnormal but looking better, will not be fed until doctors are comfortable with her x-rays an they have returned back to normal. As of right now, Reagan is keeping the nurse the busiest because she keeps wiggling around so much she moves her cpap. Reagan is still only on cpap and has not been moved to the nasal cannula (or even alternating like her sister). I pray that her belly will heal up quickly and they can start her back on her milk soon.
The girls' nurse said that she really wanted for us to come and kangaroo with Reagan (both of us!) and that once Cameron is not testing positive in her blood cultures they might be able to let us do that with Cameron, too. Right now it is hard to think about kangarooing because we have to scrub up all over again when we switch from baby to baby and even get new gowns but I do think that it could be just what all of us need!
Seth got to spend some good time with Reagan touching and talking with her. She was wide eyed and busy tonight. She had already pulled her cpap off of her face several times within one hour - she is going to keep the girls' nurse busy. My mom (Mimi) got to touch Reagan and soothe her for the first time - it was a beautiful moment. One I hope will be repeated often - my girls getting to bond with their grandparents and parents.
As I was visiting with Cameron and her nurse, the doctor came in to speak with me about Cameron. I assumed that he was just going to reiterate what I had been told already - not so. He said that he needed to give me the update on her most recent x-ray - it was looking better. He said that the gas in her belly was moving - which is good they want to see that and that both he and the fellow (or the attending ) for the radiologist looked and did not see pneumatosis - but that the actual radiology report back would not be until in the morning.
So, that being said here is what we know about Cameron - still being treated for NEC (medical NEC) and on lots of antibiotics, had blood cultures taken today to check for staph, doing well clinically (respiratory wise, blood pressure, etc.), as of right now the plan is for her to not be fed for ten days (as is typical with NEC). One thing I do know is that the pneumatosis can show up quickly, one night ago there was no pneumatosis and then this morning it showed up. So, I pray that all the rest of her x-rays can continue to come back better and she can finally shake this thing and that the staph is out of her system so she is not having to fight two bugs at once.
Reagan - blood cultures still running negative, belly x-rays still looking abnormal but looking better, will not be fed until doctors are comfortable with her x-rays an they have returned back to normal. As of right now, Reagan is keeping the nurse the busiest because she keeps wiggling around so much she moves her cpap. Reagan is still only on cpap and has not been moved to the nasal cannula (or even alternating like her sister). I pray that her belly will heal up quickly and they can start her back on her milk soon.
The girls' nurse said that she really wanted for us to come and kangaroo with Reagan (both of us!) and that once Cameron is not testing positive in her blood cultures they might be able to let us do that with Cameron, too. Right now it is hard to think about kangarooing because we have to scrub up all over again when we switch from baby to baby and even get new gowns but I do think that it could be just what all of us need!
CORRECTION - URGENT PRAYER REQUEST FOR CAMERON
The NICU doctor just called to update us on the girls. It appears that Cameron does have NEC - they are calling it medical NEC and they are treating it as NEC. Cameron's belly x-ray is showing what appears to be neumatosis ( I guess that is how you spell it ) in a corner of her bowel. So, they will continue to not feed her for probably 10 days and have increased her antibiotics drastically. I have to say that this is one of the hardest days for me as a mom because NEC is the one nasty stomach infection that the neonatologist warned me about before I had the girls. The doctor says that he is encouraged by how well Cameron is doing clinically and hopes that she will respond well to the antibiotics. Obviously I would not be so upset about this if it were not so serious. Please continue to keep her in your prayers. Pray that if it is indeed neumatosis that it will not progress and that the antibiotics would work swiftly so that she can get better. The doctor was very right and said that we should take this one day at a time and not jump to what could happen - My head knows that but my heart is breaking for my little one. On top of all of that, she continues to grow positive blood cultures for the staph - which is completely unrelated. They have also increased her antibiotics for this and are running blood cultures again as well.
On the other hand I am so thankful for Reagan's report. She does not have neumatosis and her belly x-ray seems to be looking better. Her blood cultures are running negative.
On the other hand I am so thankful for Reagan's report. She does not have neumatosis and her belly x-ray seems to be looking better. Her blood cultures are running negative.
Thursday, January 22, 2009
Roommates Again
Well, the girls got to visit with their Daddy today on their one month birthday. He said that they were both sleeping soundly so he hummed a song to them and then let them sleep.
Later, on this day they also got a present of being together again. When we called to check on them, Rachel, (Cameron's primary) was with the both of them. It sounded as if the girls were definitely keeping her on their toes...so, I don't know if they will stay that way (in fact I kind of doubt it since they are both acting sick right now).
Cameron has lost some weight, her belly x-ray remains the same, her stomach girth is back to normal. Her blood cultures are preventatively running negative, but she will remain on the antibiotics for the full course. Cameron did have her head ultrasound today and Hallelujah it came back negative for brain bleeds! Yeah Cameron! Because of the head ultrasound she had a head full of jelly she was able to get her first bath and Rachel was nice enough to take a picture. Also, Cameron was moved to the nasal cannula today because her head was getting so red from the cpap. So, now they will alternate back and forth so that her skin does not get irritated. Rachel said that she loves the cannula and I wish so much I could have been there tonight to get a picture of it! She is acting so grown! I love the cannula too because it means that we can see her face better without the mask.
Reagan's belly has returned to its normal size as well but we are not sure how the belly x-rays are looking. They decided to start her on antibiotics and to run blood cultures because she has been cold a lot today and that can sometimes mean that they are fighting infection as well. She too has been off of food since her belly stuff started. Reagan has also had frequent desats today and we were told that she had not been acting like herself as well. Reagan did not have a head ultrasound today but will probably have one on Tuesday of next week.
We are so thankful for the good news that we have received today and continue to pray that the girls would begin to feel better with each and every day.
Later, on this day they also got a present of being together again. When we called to check on them, Rachel, (Cameron's primary) was with the both of them. It sounded as if the girls were definitely keeping her on their toes...so, I don't know if they will stay that way (in fact I kind of doubt it since they are both acting sick right now).
Cameron has lost some weight, her belly x-ray remains the same, her stomach girth is back to normal. Her blood cultures are preventatively running negative, but she will remain on the antibiotics for the full course. Cameron did have her head ultrasound today and Hallelujah it came back negative for brain bleeds! Yeah Cameron! Because of the head ultrasound she had a head full of jelly she was able to get her first bath and Rachel was nice enough to take a picture. Also, Cameron was moved to the nasal cannula today because her head was getting so red from the cpap. So, now they will alternate back and forth so that her skin does not get irritated. Rachel said that she loves the cannula and I wish so much I could have been there tonight to get a picture of it! She is acting so grown! I love the cannula too because it means that we can see her face better without the mask.
Reagan's belly has returned to its normal size as well but we are not sure how the belly x-rays are looking. They decided to start her on antibiotics and to run blood cultures because she has been cold a lot today and that can sometimes mean that they are fighting infection as well. She too has been off of food since her belly stuff started. Reagan has also had frequent desats today and we were told that she had not been acting like herself as well. Reagan did not have a head ultrasound today but will probably have one on Tuesday of next week.
We are so thankful for the good news that we have received today and continue to pray that the girls would begin to feel better with each and every day.
Wednesday, January 21, 2009
Tummy Trouble Times Two
Well, we called to check on the girls tonight to find...that now both girls are having tummy issues. Today Reagan's tummy puffed up and began to look distended. So, they have stopped her feeds and have her on the TPN IV fluids that will give her her nutrients and are watching her belly. They did an x-ray and the nurse said that she had some air in her belly. They will do another one at 5 a.m.
Cameron also is still having belly issues but her x-rays seem to not be changing right now (not better or worse). We still have not heard about the blood cultures...I don't think that we will until tomorrow night.
Both girls are scheduled for head ultrasounds tomorrow.
It seems as if we are on an upward incline of the roller coaster right now and there is a lot of things that we are praying about. I pray that Reagan's belly will go down quickly. The nurses had mentioned that sometimes baby's bellies don't react well to the additives that they add to the milk. That being said, the nurse tonight said that there is no way to tell if it is the additives or something else. So, they are watching her closely. Reagan's belly has been a rock so far and so I am praying that it is just an additive issue not an infection issue. Bless her heart, she has been working so hard to gain weight and after the first significant gain, they have had to take her off of food.
I am also praying for Cameron's blood cultures and that they would begin to grow negative and that this infection in her body would begin to be killed off. I asked the nurse today if her belly issues were related to the staph or a completely different issue and she said that there isn't really any way to tell. I pray that the issues for both of my girls would be gone soon for my girls so they can focus on growing and getting bigger and stronger.
I also pray that the girls head ultrasounds would come back negative for brain bleeds (especially the big ones). Their first ones were negative but so much has happened with our little ones since the end of that first week. I know that God has not been watching over them any less in these last three weeks than He was the first week of their lives - just think of all the daily miracles that He has given us.
Cameron also is still having belly issues but her x-rays seem to not be changing right now (not better or worse). We still have not heard about the blood cultures...I don't think that we will until tomorrow night.
Both girls are scheduled for head ultrasounds tomorrow.
It seems as if we are on an upward incline of the roller coaster right now and there is a lot of things that we are praying about. I pray that Reagan's belly will go down quickly. The nurses had mentioned that sometimes baby's bellies don't react well to the additives that they add to the milk. That being said, the nurse tonight said that there is no way to tell if it is the additives or something else. So, they are watching her closely. Reagan's belly has been a rock so far and so I am praying that it is just an additive issue not an infection issue. Bless her heart, she has been working so hard to gain weight and after the first significant gain, they have had to take her off of food.
I am also praying for Cameron's blood cultures and that they would begin to grow negative and that this infection in her body would begin to be killed off. I asked the nurse today if her belly issues were related to the staph or a completely different issue and she said that there isn't really any way to tell. I pray that the issues for both of my girls would be gone soon for my girls so they can focus on growing and getting bigger and stronger.
I also pray that the girls head ultrasounds would come back negative for brain bleeds (especially the big ones). Their first ones were negative but so much has happened with our little ones since the end of that first week. I know that God has not been watching over them any less in these last three weeks than He was the first week of their lives - just think of all the daily miracles that He has given us.
Gaining Weight
Well, Reagan finally gained weight and is back over her birth weight - 804 grams! Still no blood transfusion for yesterday. They took blood at 4 am to check again. The stretching out of her feeding seems to be helping the reflux. Her nurse said that they try at all costs with ones as little as ours to not give them medication if possible - so that made me feel good. Also, her nurse said that when she turns on the digital voice recorder that Seth left for Reagan with songs and him talking that Reagan's eyes popped wide open and started looking all around - which of course made Daddy feel great!
Cameron's nurse said that they named the staph that she has and that it is not a drug resistant strain - which is good but of course having no bacteria in her body would be better. Anyway, they will continue on antibiotics until they get 3 negative blood cultures and they were to take the first of those last night or early today - I pray that this one comes back negative. They said that once again the x-ray is looking some better and that her belly is looking a little smaller. Respiratory wise, she is still doing okay on the cpap. All that being said, her nurse did say that Cameron acted a little wimpy when she went to assess her (her nurse is a primary nurse for Cameron so she knows her well) and she said that they would watch her - this is the first sign that Cameron does not feel well - which of course broke Mom's heart. Her nurse said that she would call if anything changed and we have not heard all night so I am praying that Cameron regained her spunk and that things are continuing to get better. I don't think we will call the first blood culture negative until after 48 hours and then take another one. We will keep you all posted.
Cameron's nurse said that they named the staph that she has and that it is not a drug resistant strain - which is good but of course having no bacteria in her body would be better. Anyway, they will continue on antibiotics until they get 3 negative blood cultures and they were to take the first of those last night or early today - I pray that this one comes back negative. They said that once again the x-ray is looking some better and that her belly is looking a little smaller. Respiratory wise, she is still doing okay on the cpap. All that being said, her nurse did say that Cameron acted a little wimpy when she went to assess her (her nurse is a primary nurse for Cameron so she knows her well) and she said that they would watch her - this is the first sign that Cameron does not feel well - which of course broke Mom's heart. Her nurse said that she would call if anything changed and we have not heard all night so I am praying that Cameron regained her spunk and that things are continuing to get better. I don't think we will call the first blood culture negative until after 48 hours and then take another one. We will keep you all posted.
Tuesday, January 20, 2009
Snow Day
Well, since we are snowed in today - we aren't exactly heading to the hospital. But it is a great way for us to spend time together as a family. Aubrey loved the snow and she cried like crazy when we had to bring her in. But after face planting in the snow several times she was soaked and shivering. Here she is enjoying the snow..these were taken as soon as we walked outside and before I got to her with her hat to keep her head and ears warm.
As far as an update on the girls this is what we know today:
Reagan - gained a whole 3 grams last night which is not much but we will take it. Her heart rate is high today so they are running some bloodwork - she may need another blood transfusion but they are hoping to not have to give her one and that her body will do the work on its own. They have decided that she probably has reflux and in order to help her with desating while she eats they are extending her feed time to 3 hours on and one hour off. Her nurse last night said that this is usually one of the last ditch efforts before they start trying to see if medication will work. So far, she has had one feeding and it did seem to help.
Cameron - Her morning x-ray came back better but still concerning. The bacteria that grew on her culture resembles staph but they don't know what strain yet - they are waiting for it to show itself. In the meantime, she is on antibiotics that are for staph and they are pretty potent. We still don't know about NEC and she has been using the bathroom on her own which has helped her x-rays look better. So, basically we are kind of still in the same spot we were yesterday...waiting and praying. She is still doing well respiratory wise and on exam her belly is still looking good.
The girls may have their one month head ultrasounds on Friday and then they also have their eyes being checked on Feb. 2nd to help to prevent retinopothy (not sure if I spelled that right).
Monday, January 19, 2009
Blood Cultures
Well, we went in today to see our girls and we found out that Cameron's blood cultures grew some bacteria - which means that she does in fact have an infection in her belly. The doctor said that her KUB (her belly x-ray) did not look good either. On the outside, it does not appear that anything is going on - she is doing well respiratory wise, her belly examines well, etc. but on the inside - well that is another story. He also said that her x-ray did appear to look a bit worse than yesterday. They have changed her antibiotics to match the strand of bacteria that was in her blood cultures and are awaiting to find out what the exact infection is. They are doing another x-ray today at 5 and are going to do another round of blood cultures tomorrow and hope to see that the anitbiotics are doing their thing. I asked the doctor if we know if she has the big time belly infection (NEC) and he said that we do not know yet. They are watching her very closely. I have asked for them to call us if anything changes negatively and to call anyways after the x-ray...still no word so I am taking that as a good sign. Please continue to keep her in your prayers - she needs them very badly right now. I pray that this does not make her deteriorate respiratory wise and I hope that her body bounces back very quickly from this so that she can begin to recieve food as well. Oh how I long for the days when being sick just means chicken soup and rest at home (maybe some tylenol)) instead of being such a big deal!
Reagan is doing very well still and the doctor even said that the only reason why she is staying on the cpap right now is because she is not gaining weight. For them to take her off of cpap and place her on the nasal cannula or just breath room air would make her work a little harder and, thus, burn more calories - which would not help her in gaining weight. The nurses continue to say that the main time she is having desats is during feeds or right afterwards - which does indicate possible reflux. I am so proud of her - her nurse also said that it is very encouraging that she has been able to stay on the cpap for a week now with little problems. This is a good sign that she may be able to stay on it for good - unless she gets sick (usually when a baby gets an infection they have to go back on the ventilator while their body fights the illness). They have added additional proteins to Reagan's milk and are hoping that this will help for her to gain weight. Please also pray for Reagan and that her body would begin to gain weight. She can grow so much stronger if her body will cooperate.
We will keep you posted as we hear back from the x-rays.
The doctor from the NICU called to let me know that the x-ray came back looking a little better. They will continue to x-ray so that they can keep an eye on it. They also started a dopamine drip for Cameron today - not for blood pressure but to help her kidneys (she and Reagan decided to switch places today). Overall good news from the x-ray...hopefully an even better x-ray to follow at 5 in the morning!
Reagan is doing very well still and the doctor even said that the only reason why she is staying on the cpap right now is because she is not gaining weight. For them to take her off of cpap and place her on the nasal cannula or just breath room air would make her work a little harder and, thus, burn more calories - which would not help her in gaining weight. The nurses continue to say that the main time she is having desats is during feeds or right afterwards - which does indicate possible reflux. I am so proud of her - her nurse also said that it is very encouraging that she has been able to stay on the cpap for a week now with little problems. This is a good sign that she may be able to stay on it for good - unless she gets sick (usually when a baby gets an infection they have to go back on the ventilator while their body fights the illness). They have added additional proteins to Reagan's milk and are hoping that this will help for her to gain weight. Please also pray for Reagan and that her body would begin to gain weight. She can grow so much stronger if her body will cooperate.
We will keep you posted as we hear back from the x-rays.
The doctor from the NICU called to let me know that the x-ray came back looking a little better. They will continue to x-ray so that they can keep an eye on it. They also started a dopamine drip for Cameron today - not for blood pressure but to help her kidneys (she and Reagan decided to switch places today). Overall good news from the x-ray...hopefully an even better x-ray to follow at 5 in the morning!
Sunday, January 18, 2009
What A Night!
Well, we were finally able to hold Reagan tonight and it was wonderful! I cannot even begin to tell you how exciting it was and (I will not lie) a little scary too. I am so thankful that I have now been able to hold both of my girls and as long as we can all stay healthy I plan on doing so whenever I can! Reagan has continued to do well. They increased her food again and she gained about 1/2 an ounce yesterday.
The other big news that we have today is that Cameron was able to be extubated. You will see in the photos below the before (with the tube) and the after (with the cpap).
Her nurse says that she has done beautiful since going on the cpap - no desats or anything so far. Her belly is looking much better and she is handling the cpap very well. Her blood pressure is doing much better and they are weaning on the steroid medicine they had her on. She was very worn out from such an eventful day and she slept soundly the whole time that we were there. Cameron gained almost an ounce last night - she is 813 grams.
My heart overflows with joy tonight. I am so proud of my little fighters and so proud of how they are doing. To just even think about the possibility that I might be able to go to the hospital and actually hold both of them in one day brings me to tears. I pray that is a reality that I can experience soon (preferably tomorrow if I have anything to say about it!). They have come so far for such little ones. And while I know that tomorrow could bring a different set of circumstances I am so thankful for the wonderful times of today. I wonder if I delight in this so much, how much more does their creator - who knows the hairs on their heads and every wrinkle in their skin - be delighting in their progress as well and that makes me even happier (as if that is possible right now!).
Saturday, January 17, 2009
Tonight's Update
Today has been an interesting day for the girls. This morning we were told that Cameron was on a NEC watch - which is watching for a super nasty belly infection (yes, she has been on this before) and they put her on antibiotics and ran blood cultures to be safe. As of tonight at dinner, her belly girth had gone down, her blood cultures were negative so far, and her x-ray was looking better. Her blood work was beautiful and showed no signs of infection as well. So, we are hoping that she is on the mend and her nurse said that she looked more comfortable than last night.
Reagan and Cameron both decided (I think they planned it together) to not use the bathroom today except Cameron couldn't last as long as Reagan. The nurses were watching Reagan's output to be sure that her kidneys were working appropriately. The nurse practitioner said that she has no reason to not be using the bathroom so they were just waiting for her to go. So tonight Mimi (my mom) and I had a talk with her to give her a pep talk. I even tried to use sibling rivalry by telling her that Cameron was going to the bathroom now and Aubrey even used the bathroom in the big girl potty tonight, too. I think maybe that was what did it because she did finally go a little. We are hoping that it will increase overnight. Reagan continues to do well on the cpap. She did have some desats and bradys this morning but they checked her caffeine level, gave her a boost and she has been fine ever since.
We are so incredibly thankful for our girls. It is hard to believe that we are approaching 1 month old. I don't feel like I have month old twins - it is kind of an odd feeling. The girls also have another big test coming up - they are supposed to have head ultrasounds again at 1 month so we are praying that those will continue to come back clean - we do not know when they are scheduled yet but will keep you posted. Our girls and our family have truly been blessed by all of your prayers and outpouring of love. Thank you so much.
Reagan and Cameron both decided (I think they planned it together) to not use the bathroom today except Cameron couldn't last as long as Reagan. The nurses were watching Reagan's output to be sure that her kidneys were working appropriately. The nurse practitioner said that she has no reason to not be using the bathroom so they were just waiting for her to go. So tonight Mimi (my mom) and I had a talk with her to give her a pep talk. I even tried to use sibling rivalry by telling her that Cameron was going to the bathroom now and Aubrey even used the bathroom in the big girl potty tonight, too. I think maybe that was what did it because she did finally go a little. We are hoping that it will increase overnight. Reagan continues to do well on the cpap. She did have some desats and bradys this morning but they checked her caffeine level, gave her a boost and she has been fine ever since.
We are so incredibly thankful for our girls. It is hard to believe that we are approaching 1 month old. I don't feel like I have month old twins - it is kind of an odd feeling. The girls also have another big test coming up - they are supposed to have head ultrasounds again at 1 month so we are praying that those will continue to come back clean - we do not know when they are scheduled yet but will keep you posted. Our girls and our family have truly been blessed by all of your prayers and outpouring of love. Thank you so much.
Tummy Troubles
We got word last night that Cameron's belly troubles were back. Her belly is very distended and she had not gone to the bathroom for several days. They gave her a glycerin chip which did make her go to the bathroom but did not make a change in the girth of her belly. So, we are back in the same situation that we were in a few weeks ago. We do not yet know the plan of action but we do know that Cameron cannot make the progress that we wanted with being extubated and being fed until this is resolved. Please continue to keep our girls in your prayers.
Friday, January 16, 2009
Our Best Day Yet
Well, Seth and I are going to the NICU tonight but so far from the nurses reports, this is our girls' most stable day yet! They are both doing well. Cameron has made leaps and bounds since yesterday. She is now off of her blood pressure medicine again. Her vent settings are down to room air and needing no additional oxygen. They are in the process of lowering her medicines and they are hoping to maybe try to extubate her this weekend!!!! That is huge for Cameron. So far with the PDA any time they tried to wean her on the vent settings she would not tolerate it. Her nurse says that her lungs sound great, too, and after 24 hours off the blood pressure meds they may try to start her back on milk. By the way, let me take a moment to say how wonderfully God has provided for Cameron - her nurse told me that even though she has been off since early last week she has been calling to check on her - how wonderful is that to know that she has people there at the hospital that love her enough to do that. Once again - He provides more than we ever imagined!
Reagan is continuing to do well on the cpap. The last time she was on the cpap she started having bradys and desats after a couple of hours. To my knowledge, she has only had one brady since going on the cpap on Monday! She is only having desats, which some of the nurses say may be due to reflux. I thought that yesterday they were going to give her a double dose of the HMF but they waited until today. They are hoping that this will help for her to begin to pack on a little more weight. I hope so too. They say that the battle to gain weight can be a bit of an uphill battle for preemies. So, I hope that all this milk she is drinking will begin to take effect soon!
I find myself in new territory today. I told Reagan's nurse the other day that I don't know how to handle consistently hearing "She's doing great!" And today I got to hear that about both of my girls. Even though I don't know how to react, I do know to rejoice in today's news and praise God for what we have today - we are so blessed!
Reagan is continuing to do well on the cpap. The last time she was on the cpap she started having bradys and desats after a couple of hours. To my knowledge, she has only had one brady since going on the cpap on Monday! She is only having desats, which some of the nurses say may be due to reflux. I thought that yesterday they were going to give her a double dose of the HMF but they waited until today. They are hoping that this will help for her to begin to pack on a little more weight. I hope so too. They say that the battle to gain weight can be a bit of an uphill battle for preemies. So, I hope that all this milk she is drinking will begin to take effect soon!
I find myself in new territory today. I told Reagan's nurse the other day that I don't know how to handle consistently hearing "She's doing great!" And today I got to hear that about both of my girls. Even though I don't know how to react, I do know to rejoice in today's news and praise God for what we have today - we are so blessed!
Thursday, January 15, 2009
Slow and Steady
Well, today I went to see the girls for a quick visit and found that not only are they apart, they are on two complete opposite sides of the NICU. Neither of the girls seemed to mind though, they were both sleeping soundly.
Reagan continues to do well on the cpap and as of this afternoon still seems to be holding her own without tiring out. They increased her food today and decided to give her a double dose of the human milk factor supplement (a.k.a. HMF) (which is double the calories). As of last night Reagan weighed about 1 lb. 13 ounces. They doctors will continue to watch her belly as they are adding more food and more of the HMF. When I went in to see her she was on her belly - which is her favorite and she absolutely will not wake up when she is on her belly - she is very comfy that way.
When I talked to Cameron's nurse this afternoon the best words to describe how she is doing - "better than before the surgery and slowly and steadily improving." The diuretics seemed to quit doing their job last night and this morning Cameron's blood pressure was back up as well. So, they have tweaked her medicine and added a few additional ones to help her body to work more effectively. They were able to wean her quite a bit on the ventilator settings yesterday and, even though they had to put her back on the dopamine for her blood pressure, it is much less than before the surgery. I am hoping tonight to call and hear how the new medication settings are working for her. Cameron did lose weight and is now at about the same weight as Reagan, 1 lb. 13 oz.
Reagan continues to do well on the cpap and as of this afternoon still seems to be holding her own without tiring out. They increased her food today and decided to give her a double dose of the human milk factor supplement (a.k.a. HMF) (which is double the calories). As of last night Reagan weighed about 1 lb. 13 ounces. They doctors will continue to watch her belly as they are adding more food and more of the HMF. When I went in to see her she was on her belly - which is her favorite and she absolutely will not wake up when she is on her belly - she is very comfy that way.
When I talked to Cameron's nurse this afternoon the best words to describe how she is doing - "better than before the surgery and slowly and steadily improving." The diuretics seemed to quit doing their job last night and this morning Cameron's blood pressure was back up as well. So, they have tweaked her medicine and added a few additional ones to help her body to work more effectively. They were able to wean her quite a bit on the ventilator settings yesterday and, even though they had to put her back on the dopamine for her blood pressure, it is much less than before the surgery. I am hoping tonight to call and hear how the new medication settings are working for her. Cameron did lose weight and is now at about the same weight as Reagan, 1 lb. 13 oz.
Wednesday, January 14, 2009
Reunited!
Well after three weeks and one day our girls are finally reunited. They are now in the same room at the NICU. It was very strange going to visit today and being able to see how they were both doing at one glance. I will now have to practice really focusing on one and not always looking over my shoulder at the other one. Reagan is still doing well - tolerating the milk well and having occassional desats but had only had one brady this morning. I pray that she will be able to keep up her strength to continue to stay on the cpap.
Cameron is now off all of her dopamine (blood pressure medicine). Her nurse today said that her lungs were full with fluid but that is a direct result from the pda and the surgery. She is still on diuretics to help with that. She is continuing to have desats and keeping her nurse busy but her oxygen requirement on the ventilator has come down significantly since yesterday. I am not sure if the desats are due to the fluid in her lungs - that would make sense to me - but I plan on checking with the nurse later. I know that we have to take it one day at a time and we still have a ways to go but I will take every little improvement that I can get.
**I knew it was too good to be true. As of 9:30 tonight I was informed that at shift change they moved the girls apart and now they are on complete opposite ends of the NICU. They said it had something to do with the distribution of babies with nurses or something...Oh well, at least they got to see each other today. Both girls are doing well. They decided to add something to Reagan's milk today to give her more calories called Human Milk Factor and they are watching her to see how she is tolerating it and she had her PICC line removed today - Way to Go Reagan! Cameron is resting now and has lost a little bit of weight - probably fluid. I did check to see if the desats had to do with the fluid and the nurse told me that yes, that definitely is a contributor. They will do another x-ray in the morning to check her fluid levels and hopefully there will be less there!
Cameron is now off all of her dopamine (blood pressure medicine). Her nurse today said that her lungs were full with fluid but that is a direct result from the pda and the surgery. She is still on diuretics to help with that. She is continuing to have desats and keeping her nurse busy but her oxygen requirement on the ventilator has come down significantly since yesterday. I am not sure if the desats are due to the fluid in her lungs - that would make sense to me - but I plan on checking with the nurse later. I know that we have to take it one day at a time and we still have a ways to go but I will take every little improvement that I can get.
**I knew it was too good to be true. As of 9:30 tonight I was informed that at shift change they moved the girls apart and now they are on complete opposite ends of the NICU. They said it had something to do with the distribution of babies with nurses or something...Oh well, at least they got to see each other today. Both girls are doing well. They decided to add something to Reagan's milk today to give her more calories called Human Milk Factor and they are watching her to see how she is tolerating it and she had her PICC line removed today - Way to Go Reagan! Cameron is resting now and has lost a little bit of weight - probably fluid. I did check to see if the desats had to do with the fluid and the nurse told me that yes, that definitely is a contributor. They will do another x-ray in the morning to check her fluid levels and hopefully there will be less there!
Tuesday, January 13, 2009
Latest on the Girls
At last check at 5:45, the girls are doing well. Today they decided to do another echo on Reagan to be sure that the heart murmur that they are hearing is not her pda. They decided to do it even though she is asymptomatic in light of the fact that Cameron's closed and then reopened. Her nurse said that this is her third echo showing that the pda has closed so that is a positive thing. She is doing great with her food.
Seth went back to see Cameron about an hour after her surgery and he said that already she was doing better - even though the surgeon said that it should take a few days to fully recover from the surgery. Cameron's dosage of blood pressure medicine has aready begun to decrease (from 20 to 12) and she is doing well according to her nurse. She is back in her little incubator and is resting. She has already woken up from the surgery but the medicine they are giving her for pain is helping her to sleep and heal - which is good because I would imagine that all those wiggles would only make healing more painful.
It is crazy that I am continually amazed at how God just shows up in our life - you would think that I would expect it by now because He is and always has been more than faithful - even when things don't turn out as I expect. I can just imagine God sitting back and laughing when I am astonished at His work saying - "Don't you know by now little girl that I can move mountains, I created the heavens and the earth - I can most certainly do this." I am so thankful that He definitely has moved mountains in our life - especially most recently.
Hopefully this next week will bring less ups and downs and more positive news about our little ones. We will keep you posted with the updates!
Seth went back to see Cameron about an hour after her surgery and he said that already she was doing better - even though the surgeon said that it should take a few days to fully recover from the surgery. Cameron's dosage of blood pressure medicine has aready begun to decrease (from 20 to 12) and she is doing well according to her nurse. She is back in her little incubator and is resting. She has already woken up from the surgery but the medicine they are giving her for pain is helping her to sleep and heal - which is good because I would imagine that all those wiggles would only make healing more painful.
It is crazy that I am continually amazed at how God just shows up in our life - you would think that I would expect it by now because He is and always has been more than faithful - even when things don't turn out as I expect. I can just imagine God sitting back and laughing when I am astonished at His work saying - "Don't you know by now little girl that I can move mountains, I created the heavens and the earth - I can most certainly do this." I am so thankful that He definitely has moved mountains in our life - especially most recently.
Hopefully this next week will bring less ups and downs and more positive news about our little ones. We will keep you posted with the updates!
The Big Day
Well we are here at the NICU and Seth is in with the girls. I am not going in because (probably due to nerves) my stomach has really been hurting the last few days and so I don't want to introduce any unnecessary germs...especially on such a day as this! All the necessary consents have been signed and we are awaiting for the surgical team to arrive around 9:00.
Here are the girls three week old pictures.
The first few are of Cameron with her Daddy getting ready for surgery.
Here is Reagan on her CPAP machine! She has continued to do well since getting her blood transfusion.
Surgery is now over and the cardiologist says that it went well. He said that it will take a couple of days for her to recover from the stress of the surgery but that one positive thing to note is that her lungs look better than a lot of babies that typically have the surgery at this point. We have also been told that it will probably be late late tonight or early tomorrow before she even really wakes up (depends on how she responds to the anesthesia). We praise God for the good report and hope that she continues to do well as she recovers!
Here are the girls three week old pictures.
The first few are of Cameron with her Daddy getting ready for surgery.
Here is Reagan on her CPAP machine! She has continued to do well since getting her blood transfusion.
Surgery is now over and the cardiologist says that it went well. He said that it will take a couple of days for her to recover from the stress of the surgery but that one positive thing to note is that her lungs look better than a lot of babies that typically have the surgery at this point. We have also been told that it will probably be late late tonight or early tomorrow before she even really wakes up (depends on how she responds to the anesthesia). We praise God for the good report and hope that she continues to do well as she recovers!
Monday, January 12, 2009
Surgery Scheduled...Sort of
Well, as of this afternoon, one of the doctors called us and said that Cameron will be having the surgery tomorrow. We are not sure what time but we were told that they tend to usually happen in the afternoon. We were given 3:00 as an estimate. We may know more tonight or tomorrow morning early - we are not sure.
Reagan stopped having her bradys and desats about halfway through her blood transfusion so they had decided to extubate (thanks Jenny Mac for the correct spelling :) ) and try her on the cpap machine. Her nurse said she would call me if things did not work out and I have not yet heard from her. So, if everything is going well she should be getting fed again sometime around 8 tonight. We will see how she is doing later tonight.
We just found out that Cameron is having surgery tommorow (Tues.) at 7am to close her PDA. Reagan is doing well on the CPAP.
Reagan stopped having her bradys and desats about halfway through her blood transfusion so they had decided to extubate (thanks Jenny Mac for the correct spelling :) ) and try her on the cpap machine. Her nurse said she would call me if things did not work out and I have not yet heard from her. So, if everything is going well she should be getting fed again sometime around 8 tonight. We will see how she is doing later tonight.
We just found out that Cameron is having surgery tommorow (Tues.) at 7am to close her PDA. Reagan is doing well on the CPAP.
Still no Word
Still no word on Cameron's surgery. It looks as if it may be tomorrow. Her nurse says she will keep us posted and that the doctors are going to bat for her continuously trying to get the cardiologists to clear their schedule...so we will see. She is doing well considering all that is going on while she waits.
Reagan had an unexpected morning and was having desats and bradycardias so they checked her blood levels and saw that her hermatocrit (not sure how to spell it) was low so she is getting a blood transfusion. They had to take her off of food and back on IV fluids before, during, and after the transfusion and they put a hold on extabating her for now. Her nurse said that if she does really well with the blood then they may try later ot extabate but it all depends on how she is doing. After the transfusion is over for four hours then they will slowly start her back on food. Maybe she knew that stuff was going on with her sister - who knows...they say that twins are connected like that.
We will continue to give you updates as we get them. Thanks again for your prayers!
Reagan had an unexpected morning and was having desats and bradycardias so they checked her blood levels and saw that her hermatocrit (not sure how to spell it) was low so she is getting a blood transfusion. They had to take her off of food and back on IV fluids before, during, and after the transfusion and they put a hold on extabating her for now. Her nurse said that if she does really well with the blood then they may try later ot extabate but it all depends on how she is doing. After the transfusion is over for four hours then they will slowly start her back on food. Maybe she knew that stuff was going on with her sister - who knows...they say that twins are connected like that.
We will continue to give you updates as we get them. Thanks again for your prayers!
Sunday, January 11, 2009
Surgery Tomorrow
Well, the echo finally came back and according to Cameron's nurse this morning, the nurse practitioner is trying to get Cameron on the schedule tomorrow for her surgery on her pda. Hearing this brought feelings of almost any kind to my heart. I know that the surgery takes very little time and that it takes longer to set up than to actually do the procedure. I know that they will either go through the ribs or along the scapula (I think that is what they called it) in her back to get to the duct that is known as the pda and they will put a little clamp or clip on it - it may be metal or plastic and then that is it. ..I think. I also know that this procedure happens quite a bit in the NICU - but that was on other babies not mine! Seth said that what comforts him some about the procedure is that this was not a rushed or hasty decision - they have given this pda time to close on its own. After we are past the surgery, what comforts me is that we will not have to worry about it opening back up - whereas as we have seen already with medication, sometimes the pda will still open back up. I am supposed to talk with the nurse again in a couple of hours and hopefully get more detail about when the surgery will take place - we may not know until tomorrow morning, though. Also, tomorrow is a big day for Reagan as well as they will try her on the cpap machine again. So, as you go through your day tomorrow if you wouldn't mind continually lifting up our girls, the doctors, the nurses and our family in your prayers - we would appreciate it.
Thanks so much for all your love and prayers. We wouldn't ask for it so fervently if we did not believe that it works!
Update: Spoke to the NICU earlier and they said that they are hoping that Cameron will have surgery either tomorrow or Tuesday. We will not know until tomorrow and they can talk with the cardiologists about trying to fit Cameron in.
Thanks so much for all your love and prayers. We wouldn't ask for it so fervently if we did not believe that it works!
Update: Spoke to the NICU earlier and they said that they are hoping that Cameron will have surgery either tomorrow or Tuesday. We will not know until tomorrow and they can talk with the cardiologists about trying to fit Cameron in.
Saturday, January 10, 2009
New Important Prayer Requests
Well, last night we called the nicu and found out that they were very worried about Cameron. Her blood pressure wouldn't come up, they were worried about her temperature, too. So, they did bloodwork. They are worried that she may have an infection or beginning to get one. They have placed her on antibiotics and are running blood cultures to see if she does have something. Those will run over the next few days and see what happens. Her bloodwork seemed "okay" but showed that there might be something beginning and they figured out her body temp stuff. I pray that she does not have an infection. Her nurse did say that she still did hear her pda. We don't know if they will do the surgery if Cameron has an infection. So, we are waiting and praying for everything right now.
Also, please pray that Reagan is using this time on the ventilator to save up her energy. They are planning on taking her off on Monday and placing her on cpap. I pray that she tolerates it much better. Also, as they continue to increase her food that her belly cooperates and that she continues to move as smoothly as she has.
Thanks again for your prayers.
Also, please pray that Reagan is using this time on the ventilator to save up her energy. They are planning on taking her off on Monday and placing her on cpap. I pray that she tolerates it much better. Also, as they continue to increase her food that her belly cooperates and that she continues to move as smoothly as she has.
Thanks again for your prayers.
Friday, January 9, 2009
The Waiting Game
Today Seth's Mom and I went to visit the girls at the NICU. Both girls were doing well. Reagan has had her food increased again, the doctors were able to put in her PICC line again (the IV she pulled out yesterday) and she was able to have her rate turned down on her ventilator. The doctors are ready to put her back on cpap again but want to give her the weekend and then they will try her sometime next week on the cpap. They don't want to continually try her before she is ready but she is on lower settings that many babies that they take off of the ventilator to go on cpap.
Cameron continued on her medicine for blood pressure and her heart rate was much better. She got her last dose of the neoprofin and should have her echo either Saturday or Monday. After her echo has been read then we will know what the diagnosis is for her pda - surgery or not. She cannot recieve milk until the pda issue is resolved. Last night at the NICU, Seth and I were shown what the pda actually looked like on a heart by one of the nurses. I must say that I am still very uneasy about the idea of my daughter having surgery - I know that God has had both of my girls in His hands since they were conceived and I pray that He will continue to keep both of them safe throughout this journey - including possible surgery.
Both girls today looked so peaceful and sweet all snuggled up in their beds. We would talk with them and they would peer at us and then close their eyes to quickly go back to sleep. The nurses were very good about encouraging us to talk to the girls and to touch them to let them know that we were there. Last night one of the nurses even told Seth that we should record our voices and the nurses could play it for the girls when we are not there - he was very very excited about the idea of being able to read them stories, pray for them aloud, talk to them and even sing them songs on a recorder. Both girls are known for being fiesty and wiggly - if they not tucked into their "snugglies" that hold them like they might have been in utero then their arms and legs have been known to get them into trouble a bit - which is partly to blame for some of the drama that we have had the last few days! They have had our hearts since we knew that they were in existence but they are also capturing the hearts of their nurses as well. I praise God for my little miracles and am so thankful for them.
Cameron continued on her medicine for blood pressure and her heart rate was much better. She got her last dose of the neoprofin and should have her echo either Saturday or Monday. After her echo has been read then we will know what the diagnosis is for her pda - surgery or not. She cannot recieve milk until the pda issue is resolved. Last night at the NICU, Seth and I were shown what the pda actually looked like on a heart by one of the nurses. I must say that I am still very uneasy about the idea of my daughter having surgery - I know that God has had both of my girls in His hands since they were conceived and I pray that He will continue to keep both of them safe throughout this journey - including possible surgery.
Both girls today looked so peaceful and sweet all snuggled up in their beds. We would talk with them and they would peer at us and then close their eyes to quickly go back to sleep. The nurses were very good about encouraging us to talk to the girls and to touch them to let them know that we were there. Last night one of the nurses even told Seth that we should record our voices and the nurses could play it for the girls when we are not there - he was very very excited about the idea of being able to read them stories, pray for them aloud, talk to them and even sing them songs on a recorder. Both girls are known for being fiesty and wiggly - if they not tucked into their "snugglies" that hold them like they might have been in utero then their arms and legs have been known to get them into trouble a bit - which is partly to blame for some of the drama that we have had the last few days! They have had our hearts since we knew that they were in existence but they are also capturing the hearts of their nurses as well. I praise God for my little miracles and am so thankful for them.
Thursday, January 8, 2009
Two Week Old Photos...Finally!
Well I was finally able to load the pictures of the girls from Monday! The first picture is of Reagan. This was the day that she opened both of her eyes (at least that I could see because we were not able to come due to sickness). She kept opening them and I would snap the camera and then she would close them right as I snapped the pictures. The second is of Cameron. Sorry for the flash but Cameron has a cool air mattress underneath her that helps her stay cozy like she would have been if she was still in her mommy's belly.
Both girls were doing well still this morning when I got there. Reagan has had her food increased again...as much eating as she is doing I really hope that we start to see her weight go up and to see her grow quickly! Cameron is still on the medications to keep her stable while dealing with the pda but she is having a good day so far. However, Reagan I think wants to give me a complex about coming to visit her because right after I got there her alarm on her ventilator started to go off and her numbers started to drop .... then they realized that Reagan had extabated herself! She had moved her tube around inside and they had to rush to reintebate her! I went to Cameron's room while all the action was going on and Cameron's nurse was there to assure me that she (Reagan) was fine and that they just had to put the tube back in for her. After that, Reagan's nurse realized that she also had accidentally removed her IV so they had to put that back in as well! My girls and their tubes!
I just finished speaking with the nurses and Reagan is napping after her eventful morning and the doctors are hoping to maybe have her on all milk and no supplemental fluids in a couple of days (barring any crazy events). Cameron is still doing well. Her lungs are sounding good and she doesn't have as many secretions coming out in her breathing tube. They can still hear the murmur so we are watching how things go for tomorrow's dose of medicine and then she will get her echo to see what effect the medicine has had.
Wednesday, January 7, 2009
A Peaceful Visit
Well, my parents and I went back to the NICU and we were so relieved to see the girls resting peacefully and doing well. It was such a wonderful break from the drama from earlier today. Reagan's belly issues resolved and she has had 3 feedings so far and will continue to get fed on a schedule of 2 hours with her feeding tube on and 2 hours with it off (which she will continue to be on until they try to teach her to feed with a bottle after she reaches the time she would have been 32-34 weeks unless she starts to show signs of distress in her belly again). Cameron seemed to calm down some with her blood pressure and her desats. The nurses have determined that Cameron is very stable when her pda is closed...it is when it is open that she has the trouble. Cameron's nurse tonight said that this is very typical of a baby with a pda and they are keeping her safe and stable.
I thank God so much for the chance to bond with my girls tonight after such a tough day both for them and for me. It felt so good to touch their hands or to rub their backs and tell them that I loved them and wanted them to keep working hard. Both girls started to move and open their eyes when they heard me talking (which of course made my heart soar!). I am so thankful that God has placed us in an area with good hospitals and that the doctors are working to keep my girls safe. Even after a rough day like today I find it so unbelievable when I look at all that God has done for us - more than what we ever thought imaginable (and more than what some of the doctors did too). I will continue to pray for more encouraging days though because they are what keep me going day in and day out.
I thank God so much for the chance to bond with my girls tonight after such a tough day both for them and for me. It felt so good to touch their hands or to rub their backs and tell them that I loved them and wanted them to keep working hard. Both girls started to move and open their eyes when they heard me talking (which of course made my heart soar!). I am so thankful that God has placed us in an area with good hospitals and that the doctors are working to keep my girls safe. Even after a rough day like today I find it so unbelievable when I look at all that God has done for us - more than what we ever thought imaginable (and more than what some of the doctors did too). I will continue to pray for more encouraging days though because they are what keep me going day in and day out.
Trivial No More
Well, last night and today were very eventful times for our girls....not in the unbelievably good news way either. The short version of what is going on is this:
Reagan - Had to be intebated again today...she was having a very tough time remembering to breathe. They had increased the amount of food she was getting but now her belly is looking a little bloated and had some food leftover in her belly after mealtime was over...so they are stopping her food to see if it will resolve itself. If not, then they will investigate further.
Cameron - Turns out her pda is no longer trivial. She is very symptomatic due to her pda. She is retaining fluid, her blood pressure is way too low, and so they are putting her back on the medicine to help close the pda and increasing her amount of fluid meds and blood pressure meds. After Friday, they will do another echo this weekend and if Cameron is still as symptomatic as she is right now and her pda is even the slightest bit open - she will be having surgery to close it.
Sorry to be so short on the updates but I am hoping to return to the NICU tonight and hopefully find the girls doing some better and some of the issues they are having being handled. Today is definitely one of the tough days. Obviously, due to the stress they have already been through today there will be no kangaroo care today (and probably for the next couple of days).
Reagan - Had to be intebated again today...she was having a very tough time remembering to breathe. They had increased the amount of food she was getting but now her belly is looking a little bloated and had some food leftover in her belly after mealtime was over...so they are stopping her food to see if it will resolve itself. If not, then they will investigate further.
Cameron - Turns out her pda is no longer trivial. She is very symptomatic due to her pda. She is retaining fluid, her blood pressure is way too low, and so they are putting her back on the medicine to help close the pda and increasing her amount of fluid meds and blood pressure meds. After Friday, they will do another echo this weekend and if Cameron is still as symptomatic as she is right now and her pda is even the slightest bit open - she will be having surgery to close it.
Sorry to be so short on the updates but I am hoping to return to the NICU tonight and hopefully find the girls doing some better and some of the issues they are having being handled. Today is definitely one of the tough days. Obviously, due to the stress they have already been through today there will be no kangaroo care today (and probably for the next couple of days).
Tuesday, January 6, 2009
Kangaroo Care
Well today was a very exciting day for me. I went to the NICU expecting the typical visit...go in and look at the girls...get the update for one...ask questions...and do the same with the next one...then, go and talk with whomever is awake for a while...go and talk with the other one if she is awake, if not, then just whisper some I love you's and then try to let her sleep. But not today!
Imagine my surprise when Cameron's nurse said, "Have you ever heard of kangaroo care?" and I told her I had heard of it and she proceeded to tell me that kangaroo care is when Seth or I would hold the baby on my chest and especially with the mom, my body heat would heat her appropriately. She said that usually the babies do great with the touch and they need less oxygen and other things during the time. It was amazing! Cameron did wonderful and we even got our first picture taken together (I am waiting to recieve it from the respiratory therapist who took our picture). I don't know how much good it did for her but I am still on a high from being able to hold one of my little girls for the first time - really hold her and have skin to skin contact! Even more exciting is leaving today knowing that I can hold both of my girls if they are having a good day...so, Reagan is up next to have her turn!
As far as health updates go, here is what I know today - also when I arrived today they had Reagan on the cpap machine but she was not tolerating it as well as she had in the past so they were looking at a few things and if it does not improve then they will reintebate her. They tried to get Cameron to go down on her settings some but she was not a fan today...so, she will work on gaining weight and maybe they will try again tomorrow. Cameron's nurse also said that she asked about the "trivial pda" classification and they said that it means that it is so small that it appears that it is in process of closing so they will keep checking it. She was having some blood pressure issues still today so they are watching her but she is doing great with her food and her belly looks good. Thank you so much for your prayers and your outpouring of love and support.
Imagine my surprise when Cameron's nurse said, "Have you ever heard of kangaroo care?" and I told her I had heard of it and she proceeded to tell me that kangaroo care is when Seth or I would hold the baby on my chest and especially with the mom, my body heat would heat her appropriately. She said that usually the babies do great with the touch and they need less oxygen and other things during the time. It was amazing! Cameron did wonderful and we even got our first picture taken together (I am waiting to recieve it from the respiratory therapist who took our picture). I don't know how much good it did for her but I am still on a high from being able to hold one of my little girls for the first time - really hold her and have skin to skin contact! Even more exciting is leaving today knowing that I can hold both of my girls if they are having a good day...so, Reagan is up next to have her turn!
As far as health updates go, here is what I know today - also when I arrived today they had Reagan on the cpap machine but she was not tolerating it as well as she had in the past so they were looking at a few things and if it does not improve then they will reintebate her. They tried to get Cameron to go down on her settings some but she was not a fan today...so, she will work on gaining weight and maybe they will try again tomorrow. Cameron's nurse also said that she asked about the "trivial pda" classification and they said that it means that it is so small that it appears that it is in process of closing so they will keep checking it. She was having some blood pressure issues still today so they are watching her but she is doing great with her food and her belly looks good. Thank you so much for your prayers and your outpouring of love and support.
Monday, January 5, 2009
Two Weeks Old!
Well, today the girls are officially two weeks old and I was so excited that I got to go in and see them for a few short minutes tonight. I have pictures that I will be uploading of the girls - probably tomorrow. I couldn't believe how much bigger they looked to me even just after four days of not seeing them. The good news is that both girls are above their birth weights now. Cameron is 1 lb. 11 oz. and Reagan is 1 lb. 12.5 oz.
Both girls had echoes today...Reagan's PDA is indeed closed - she does have a heart murmur (which is what the nurses have been hearing) but it does not appear to be with a major duct like the PDA is. The echo is currently not showing anything. Cameron however, does still have a what they call a "trivial PDA" which means that hers has opened back up. Because it is so small the nurse practitioner said that they may just let it be and see if it closes back up but we will find out more information tomorrow for sure.
Both girls also had blood transfusions today which has helped them and both are on very low vent settings (in hopes that they can be placed back on the cpap in the near future). Reagan's food has been increased in frequency. Cameron's belly was measuring a little large so they are watching her with her food and her blood pressure has been a little low so they are also watching that.
One cool thing is that both of Reagan's eyes are finally open. For about a week she looked like she was constantly winking because only one eye had opened up but now they are both open and it is like seeing my little girl in a whole new light.
Thank you so much for your prayers and we will continue to keep you posted. This mommy is just happy that she gets to go and see them whenever she likes again!
Both girls had echoes today...Reagan's PDA is indeed closed - she does have a heart murmur (which is what the nurses have been hearing) but it does not appear to be with a major duct like the PDA is. The echo is currently not showing anything. Cameron however, does still have a what they call a "trivial PDA" which means that hers has opened back up. Because it is so small the nurse practitioner said that they may just let it be and see if it closes back up but we will find out more information tomorrow for sure.
Both girls also had blood transfusions today which has helped them and both are on very low vent settings (in hopes that they can be placed back on the cpap in the near future). Reagan's food has been increased in frequency. Cameron's belly was measuring a little large so they are watching her with her food and her blood pressure has been a little low so they are also watching that.
One cool thing is that both of Reagan's eyes are finally open. For about a week she looked like she was constantly winking because only one eye had opened up but now they are both open and it is like seeing my little girl in a whole new light.
Thank you so much for your prayers and we will continue to keep you posted. This mommy is just happy that she gets to go and see them whenever she likes again!
Sunday, January 4, 2009
It's Back
Well, this morning when we spoke to the NICU nurses we found out that the roller coaster is back again. The good news that we got was the Cameron's PDA is closed and the not so great news is that they think that Reagan's has reopened. They are watching Reagan today and her oxygen saturation (if it goes down they call it a desat) and if it continues to go down then they will order another echo. If it shows that her PDA is open again then the will most likely schedule her for surgery as early as tomorrow...if not tomorrow then later in the week.
The doctors told us that this could happen, that even if the PDA closes, it can be prone to open back up. However, I cannot lie...this is discouraging. Reagan's nurse said she could hear it yesterday and it does sound softer today (not as loud) so my prayer is that it will close back up. I grilled the nurse about the specifics of the surgery and she said that they have done it on babies smaller than Reagan before and that it is a relatively quick procedure that they do in her NICU room. She said it actually takes longer to set up for the surgery than to do the procedure. I hope that we do not have to find out first hand. This news is hard to take when we cannot go and visit yet because we have not been symptom free for 48 hours.
Cameron's nurse also shared that she saw a loop still in her tummy - which is not great and so that the doctors may continue to hold off food for her until it is gone or they may go ahead and start food in hopes that it will encourage her bowels to be more active.
We will be keeping close tabs today to see what the doctors have decided to do. Please continue to keep our girls in your prayers like you have. The PDA issue is one that we will have to pray on an ongoing basis because the doctors say that a simple infection can cause it to reopen. Also, the digestive issues are also a concern for the forseeable future because as they give the girls food and increase the amounts, the doctors are always concerned about a particularly nasty digestive infection as well.
It's hard to believe our girls will be two weeks old tomorrow. And that this Thursday they would have been 28 weeks in gestation. Thanks again for your prayers.
The doctors told us that this could happen, that even if the PDA closes, it can be prone to open back up. However, I cannot lie...this is discouraging. Reagan's nurse said she could hear it yesterday and it does sound softer today (not as loud) so my prayer is that it will close back up. I grilled the nurse about the specifics of the surgery and she said that they have done it on babies smaller than Reagan before and that it is a relatively quick procedure that they do in her NICU room. She said it actually takes longer to set up for the surgery than to do the procedure. I hope that we do not have to find out first hand. This news is hard to take when we cannot go and visit yet because we have not been symptom free for 48 hours.
Cameron's nurse also shared that she saw a loop still in her tummy - which is not great and so that the doctors may continue to hold off food for her until it is gone or they may go ahead and start food in hopes that it will encourage her bowels to be more active.
We will be keeping close tabs today to see what the doctors have decided to do. Please continue to keep our girls in your prayers like you have. The PDA issue is one that we will have to pray on an ongoing basis because the doctors say that a simple infection can cause it to reopen. Also, the digestive issues are also a concern for the forseeable future because as they give the girls food and increase the amounts, the doctors are always concerned about a particularly nasty digestive infection as well.
It's hard to believe our girls will be two weeks old tomorrow. And that this Thursday they would have been 28 weeks in gestation. Thanks again for your prayers.
Cameron's PDA
Well, it is 3:30 in the morning and we spoke with Cameron's nurse and she said that preliminary results look as if Cameron's PDA may be closed! While we are so excited we have to wait until the attending cardiologist confirms this and we do not know when that will be - possibly sometime still this morning. Anyway, if it has closed then she should be able to start trying to drink milk tomorrow! We are very hopeful for a good diagnosis from the cardiologist!
Saturday, January 3, 2009
Banned from the NICU (sort of)
Well, the Carter's are all battling some sickness - nothing that would normally put us out of commission - but enough to know that we shouldn't be near the twins. So, when we called the NICU they said it is better to be on the safe side and to not come until we are 48 hours symptom free. Of course, for someone who is addicted to seeing her little girls this is very hard but the nurses have been so nice about not being upset with us calling a couple of times a shift to check on them. Last night I kept missing Cameron's nurse because she was with the other baby that she also watches in the same room as Cameron and then because she was on her break - she was so nice and she called me last night just to give me an update because she felt bad that I had missed her. I told her over and over again how much I appreciated her thoughtfulness.
Interestingly enough, last night when I heard Reagan's update and then Cameron's - it was the exact same (except that Cameron still has the PDA and Reagan is eating milk now). Both of them were given Lasix yesterday to help get rid of excess fluid and both were breathing on the same settings on the vent. The nurse for Cameron said that this is very common for identical twins - even though they are not with each other in the same room for one twin to do something and then the other one to do the same even hours later. And today when we spoke to the nurses today, same thing - both girls were on additional doses of the lasix.
For Christmas Aubrey got twin baby dolls and she loves to carry them around. We practice calling them Reagan and Cameron. Today she had fun wearing her "I'm the Big Sister" shirt and she would carry the babies around, kiss them on the top of the head, and practice putting them to sleep. Here she is with her babies in one of their cribs!
As I writing this (almost 9 pm) we still have not heard about Cameron's echo yet but will let you know when we hear!
Interestingly enough, last night when I heard Reagan's update and then Cameron's - it was the exact same (except that Cameron still has the PDA and Reagan is eating milk now). Both of them were given Lasix yesterday to help get rid of excess fluid and both were breathing on the same settings on the vent. The nurse for Cameron said that this is very common for identical twins - even though they are not with each other in the same room for one twin to do something and then the other one to do the same even hours later. And today when we spoke to the nurses today, same thing - both girls were on additional doses of the lasix.
For Christmas Aubrey got twin baby dolls and she loves to carry them around. We practice calling them Reagan and Cameron. Today she had fun wearing her "I'm the Big Sister" shirt and she would carry the babies around, kiss them on the top of the head, and practice putting them to sleep. Here she is with her babies in one of their cribs!
As I writing this (almost 9 pm) we still have not heard about Cameron's echo yet but will let you know when we hear!
Friday, January 2, 2009
Completely Humbled By God's Goodness!
Well, not much to write right now but just wanted to share with you our amazing news - Reagan's echo came back and her PDA is gone - no additional medication or surgery is necessary! God is so good and we are so humbled by how much He continues to bless us!
I was mistaken about Cameron's echo it is scheduled for tomorrow but her chest and stomach x-rays came back fine!
I was mistaken about Cameron's echo it is scheduled for tomorrow but her chest and stomach x-rays came back fine!
Thursday, January 1, 2009
Big Day Tomorrow
Today we made an early trip to see the girls. Seth didn't get a chance to see them, so I wanted for him to have as much time as possible - so I got a quick update and stayed with Aubrey in the waiting room. (Side note: When we went into the waiting room Aubrey said - "Cameron?" We can tell that she is really listening to what we say!) Both girls were doing well and so we asked them to continue to do that. I made another quick phone call to the nurses around dinner. Here was our last update.
Reagan - Doing well...nurse says she can still hear the PDA but it is not as loud as it was this weekend. She is done with the medicine for the PDA and is scheduled for an echo tomorrow to see. The nurse said that the doctors were talking today about considering maybe giving her a third dose of medication instead of the surgery but will see what the echo says before making a decision as to which would be best. They decided to start feeding Reagan milk tonight. She was getting ready to start on her first taste of real life baby food...not just food from an IV. They start with a small amount to see if their tummies can tolerate it. Please pray that the echo goes well and that the doctors would have wisdom with their decisions. Also pray that Reagan would do well with the food.
Cameron - Yesterday Cameron's lungs were sounding a little wet. The doctors restricted her some of her fluids. Today her ultrasound or x-ray that they did (not sure which) looked much better than yesterday and her lungs sounded much better. She is continuing on the medicine for her PDA and is scheduled for another ultrasound of her lungs and digestive system and an echo tomorrow. Please pray that the lungs and digestive system scans would come out clear. Also, please continue to pray that Cameron would be receptive to the medication for her PDA.
Obviously our girls have a busy day tomorrow. Many of their tests will actually take place as early as 4 in the morning. Many of you I know will not have read this by then but thank you for keeping our family in your prayers. One praise that we have for today is that we were able to spend a lot of quality time as a family (or at least the part of it that is home). Aubrey has truly been a joy since coming home and God has continued to use her as an encouragement to me. One day at lunch this past week I started to cry a little and she looked at me and said "Stop." Out of the mouths of babes I suppose. What a blessing to have her in our family.
Reagan - Doing well...nurse says she can still hear the PDA but it is not as loud as it was this weekend. She is done with the medicine for the PDA and is scheduled for an echo tomorrow to see. The nurse said that the doctors were talking today about considering maybe giving her a third dose of medication instead of the surgery but will see what the echo says before making a decision as to which would be best. They decided to start feeding Reagan milk tonight. She was getting ready to start on her first taste of real life baby food...not just food from an IV. They start with a small amount to see if their tummies can tolerate it. Please pray that the echo goes well and that the doctors would have wisdom with their decisions. Also pray that Reagan would do well with the food.
Cameron - Yesterday Cameron's lungs were sounding a little wet. The doctors restricted her some of her fluids. Today her ultrasound or x-ray that they did (not sure which) looked much better than yesterday and her lungs sounded much better. She is continuing on the medicine for her PDA and is scheduled for another ultrasound of her lungs and digestive system and an echo tomorrow. Please pray that the lungs and digestive system scans would come out clear. Also, please continue to pray that Cameron would be receptive to the medication for her PDA.
Obviously our girls have a busy day tomorrow. Many of their tests will actually take place as early as 4 in the morning. Many of you I know will not have read this by then but thank you for keeping our family in your prayers. One praise that we have for today is that we were able to spend a lot of quality time as a family (or at least the part of it that is home). Aubrey has truly been a joy since coming home and God has continued to use her as an encouragement to me. One day at lunch this past week I started to cry a little and she looked at me and said "Stop." Out of the mouths of babes I suppose. What a blessing to have her in our family.
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