So Bree has been admitted to PCH. We went into the ER last night (at 6pm) because Bree was not making tears anymore, was getting to be inconsolable and extremely fussy again. After three hours of sitting in an initial exam room we were put into an ER room to wait to talk to the Doctor. Dr. Hanson came in, took our info, and went to go consult with a colleague. His colleague came in, talked with us and they then decided we were going to be admitted to the hospital.
Bree was given every type of blood test imaginable, and even had a urine sample and stool sample taken. They started her on fluids and we all laid down to rest for the night (at midnight). At four in the morning we were awakened to be told that there was a room for us. So we packed up, and moved to room 310, bed B. We have the bed by the window so we have a lovely view of the roof of the other part of the building along with the new construction area. I am sure that during the week it will supply me with some sort of entertainment. Bree has three wires (two on her apnea monitor, one for her oximeter), and two tubes (oxygen, and then I.V.).
So far this morning, we have seen Dr. Elliot, the social worker, and the dietician. We are waiting to see the GI people (gastro intestinal). We are probably going to make a choice on where we are putting her feeding tube. Our pediatrician expressed concern over having it in her nose since she is already on oxygen. Babies are very much nose breathers and having just another thing blocking her nose is likely to make it hard for her to blow off the CO2 her body creates. So, we are going to be making a decision on what to do. I know that they can put one surgically into her stomach, but the idea of another surgery, no matter how small, just freaks me out.
HUGE THANK YOU to Cheri and to Aleasha for helping us out with Riley. Cheri watched Riley last night, and Aleasha is taking tonight. Obviously, if I had to do this alone I would, but it makes it easier to have Adam here for support and to be able to consult with him in person rather than over the phone. Without the friends that we have, we would be lost and floundering in this whole ordeal (and ones past...and experiences to come). We have truly made friends here that are like family to us. You know who all of you are....from the bottom of our hearts: thank you.
Small update: The nurse just came and took Bree's tempature and it was normal this morning at eight. It is now 99.7, so she now has a fever. :( Please be praying for healing of her little body. Our God is a big God of miracles...we love him and thank him for all that he does!
Saturday, January 24, 2009
Friday, January 23, 2009
Hospitals = Help...right?
Once again, we are in a position that I wish upon no parent. The Phoenix Children's Hospital is so full that they do not have a bed for Bree so we are stuck waiting until one becomes available.
As you all know, Bree has never really been able to "do her doody" on her own. She had to be given suppositories every three days for her to go. Well, Saturday night (at 1:30 am!!) she pooped all on her own...everywhere. We were elated and didn't even think that she could be sick. Well, she pooped Sunday, Monday, Tuesday and Wednesday. All diarrhea. :( Starting Wednesday morning, she was throwing up everything that was given to her. She kept one bottle down in the afternoon so I decided to go grocery shopping (or we were eating ketchup and mayo for dinner).
Our AWESOME friend Aleasha, was brave and watched Riley for us while I went shopping with Bree. Normally, when I go grocery shopping Bree is lulled by the motion of the cart and sleeps the whole time. Not this time. She SCREAMED!!! The whole time. No matter what I did. At first the pacifier was soothing her, but towards the end it was't even working. I paid for my groceries and pushed the cart out to the car. I loaded the groceries then sat in the front seat with Bree trying to feed her, since I thought that was the issue.
While feeding her she looked extremely pale, so I bumped up her oxygen from 0.1 to 0.3 to see if it would make a difference. Nope. Didn't make any difference at all. So I called Adam and upon his recommendation I called the pediatrician. We were told to high tail it to PCH. I called Aleasha, she agreed to watch Riley for us overnight and Adam left work and we headed home to drop off groceries and to get formula and what not for Bree.
Upon arrival at PCH there were a TON of people there. Standing room only type of busy. Upon seeing us sit down with such a small child, a nurse came and took our information and took us back into an exam room so that Bree was not exposed to any of the sicknesses in the waiting room. For that, I am truly grateful. It just went down hill from there. I told them all of her symptoms and to make a long story short all they did was take her blood, test for electrolyte balance, give her fluids and sent us home with a diagnosis of diarrhea. Are you serious??? Never mind that she spits up whatever you give her, or that she doesn't stop crying unless sleeping...she just has diarrhea. UGH!
We followed up with Dr. Pham the next morning and he did not seem pleased that the hospital hadn't even called him. (he was on call with them) He told us that if they had called him, he would have had them keep her. He said he was calling the hospital to have her admitted. We were told to take her home, try and get as much fluids in her as we could and to wait. Wait for the hospital to call us and let us know when to bring her in.
That is where we are now. We might be going into the hospital tonight to get her fluids, but that's all they will do until they have a bed for her. I am very frustrated and angry, even though I understand there are other sick kids. It is scary to see Bree going from extremely pale when sleeping, hard to rouse and when she is awake, she is crying, flushed (like when you have a fever), just not happy at all. She does not have a fever, but is not eating well at all. She isn't putting out urine well at all. (one wet diaper in 12 hours) We are waiting, hoping and praying...because that is all we can do right now.
As you all know, Bree has never really been able to "do her doody" on her own. She had to be given suppositories every three days for her to go. Well, Saturday night (at 1:30 am!!) she pooped all on her own...everywhere. We were elated and didn't even think that she could be sick. Well, she pooped Sunday, Monday, Tuesday and Wednesday. All diarrhea. :( Starting Wednesday morning, she was throwing up everything that was given to her. She kept one bottle down in the afternoon so I decided to go grocery shopping (or we were eating ketchup and mayo for dinner).
Our AWESOME friend Aleasha, was brave and watched Riley for us while I went shopping with Bree. Normally, when I go grocery shopping Bree is lulled by the motion of the cart and sleeps the whole time. Not this time. She SCREAMED!!! The whole time. No matter what I did. At first the pacifier was soothing her, but towards the end it was't even working. I paid for my groceries and pushed the cart out to the car. I loaded the groceries then sat in the front seat with Bree trying to feed her, since I thought that was the issue.
While feeding her she looked extremely pale, so I bumped up her oxygen from 0.1 to 0.3 to see if it would make a difference. Nope. Didn't make any difference at all. So I called Adam and upon his recommendation I called the pediatrician. We were told to high tail it to PCH. I called Aleasha, she agreed to watch Riley for us overnight and Adam left work and we headed home to drop off groceries and to get formula and what not for Bree.
Upon arrival at PCH there were a TON of people there. Standing room only type of busy. Upon seeing us sit down with such a small child, a nurse came and took our information and took us back into an exam room so that Bree was not exposed to any of the sicknesses in the waiting room. For that, I am truly grateful. It just went down hill from there. I told them all of her symptoms and to make a long story short all they did was take her blood, test for electrolyte balance, give her fluids and sent us home with a diagnosis of diarrhea. Are you serious??? Never mind that she spits up whatever you give her, or that she doesn't stop crying unless sleeping...she just has diarrhea. UGH!
We followed up with Dr. Pham the next morning and he did not seem pleased that the hospital hadn't even called him. (he was on call with them) He told us that if they had called him, he would have had them keep her. He said he was calling the hospital to have her admitted. We were told to take her home, try and get as much fluids in her as we could and to wait. Wait for the hospital to call us and let us know when to bring her in.
That is where we are now. We might be going into the hospital tonight to get her fluids, but that's all they will do until they have a bed for her. I am very frustrated and angry, even though I understand there are other sick kids. It is scary to see Bree going from extremely pale when sleeping, hard to rouse and when she is awake, she is crying, flushed (like when you have a fever), just not happy at all. She does not have a fever, but is not eating well at all. She isn't putting out urine well at all. (one wet diaper in 12 hours) We are waiting, hoping and praying...because that is all we can do right now.
Thursday, January 22, 2009
PCH here we come!
Prayers please! Miss Bree is going back into the hospital...she has had significant problems with weight gain since coming home and now she is spitting up whatever she is fed, is having diarrhea, and is EXTREMELY fussy! Our pediatrician is calling Phoenix Children's Hospital as we speak to try and get her admitted. Luckily, Danielle is willing to watch Riley for us during the week so that I can be at the hospital with Bree...(THANK YOU DANIELLE!)
There is a lot more to this story than I am telling, and I will tell it when I have the time. Right now I am trying to get meals laid out for next week (so Adam and Riley aren't living off of Mickey D's), Bree packed, and myself too....along with five hundred other things I have running through my mind!
There is a lot more to this story than I am telling, and I will tell it when I have the time. Right now I am trying to get meals laid out for next week (so Adam and Riley aren't living off of Mickey D's), Bree packed, and myself too....along with five hundred other things I have running through my mind!
Wednesday, January 21, 2009
Family
Our family is doing pretty good. We are having the usual bumps and surprises that come up, but besides that we are holding it together.
Bree will be getting a feeding tube again this week. She should be taking at least 60 cc's a feeding now and she is on average taking 45 cc's. So, we are going to let her eat what she can out of the bottle, and when she runs out of steam, we are going to put the rest into the feeding tube. So, during the day we will let her feed on demand like we have been (about every 2.5 hours) and then at night we need to get her back on a schedule of every three hours. This will continue until she is gaining weight appropriately and eating her feedings all by bottle. We will be having a nurse come to the house to put the tube in and to teach us about it. Hopefully this happens sooner than later, but I will find out today when the pediatrician calls.
Bree also got her synagis shot yesterday. This is a shot to help prevent RSV. Hopefully it works and we do not have to go through what we went through with Riley last year. (For those of you who don't know, Riley had RSV last year and was hospitalized for a week with it!)
Riley is growing and expanding her vocabulary like crazy. She now says "E-tan" (Ethan), "reeeee" (Bree), "eat" (no explanation needed), and so many more! I can't think of them off the top of my head. She is also starting to 'talk in sentences'. She is just making up goobly gook noises to make it sound like she is making sentences. She does this most when she is sitting down looking at books and reading to herself. After "reading" her book she exclaims "ALLLL DOONE!" and gets out of her rocking chair to get another one.
Since she is showing interest in actually reading books we are starting a bed time routine of bath, (ONE) book, prayers, and bed. Quick and easy, but it allows her time to settle down.
Speaking of routines, Adam and I have gotten together and even made a schedule for ourselves. It feels like we have just been co-existing as of lately. We take care of kids, get them into bed, veg on tv, then not too shortly after the kiddos, we hit the sack ourselves. So to help us feel more connected with one another we are starting out small with a game night on Fridays, and a movie night on Mondays. (Movie Monday, Fun Friday) We hope to continue this even until the girls can start to participate.
Our anniversary is coming up as well (FEB 5TH!) and we have had some friends offer to be brave and watch Bree and Riley for us so we can have a few hours to go out and celebrate our 3 years of being married. A lot has happened in those three years! Moving states (twice), and two kids later we are still holding strong. We have our issues just like everyone else, but it is our love for one another that brings us back together and we work out whatever the issue was.
Hope this finds everyone happy healthy and in love with life!
Bree will be getting a feeding tube again this week. She should be taking at least 60 cc's a feeding now and she is on average taking 45 cc's. So, we are going to let her eat what she can out of the bottle, and when she runs out of steam, we are going to put the rest into the feeding tube. So, during the day we will let her feed on demand like we have been (about every 2.5 hours) and then at night we need to get her back on a schedule of every three hours. This will continue until she is gaining weight appropriately and eating her feedings all by bottle. We will be having a nurse come to the house to put the tube in and to teach us about it. Hopefully this happens sooner than later, but I will find out today when the pediatrician calls.
Bree also got her synagis shot yesterday. This is a shot to help prevent RSV. Hopefully it works and we do not have to go through what we went through with Riley last year. (For those of you who don't know, Riley had RSV last year and was hospitalized for a week with it!)
Riley is growing and expanding her vocabulary like crazy. She now says "E-tan" (Ethan), "reeeee" (Bree), "eat" (no explanation needed), and so many more! I can't think of them off the top of my head. She is also starting to 'talk in sentences'. She is just making up goobly gook noises to make it sound like she is making sentences. She does this most when she is sitting down looking at books and reading to herself. After "reading" her book she exclaims "ALLLL DOONE!" and gets out of her rocking chair to get another one.
Since she is showing interest in actually reading books we are starting a bed time routine of bath, (ONE) book, prayers, and bed. Quick and easy, but it allows her time to settle down.
Speaking of routines, Adam and I have gotten together and even made a schedule for ourselves. It feels like we have just been co-existing as of lately. We take care of kids, get them into bed, veg on tv, then not too shortly after the kiddos, we hit the sack ourselves. So to help us feel more connected with one another we are starting out small with a game night on Fridays, and a movie night on Mondays. (Movie Monday, Fun Friday) We hope to continue this even until the girls can start to participate.
Our anniversary is coming up as well (FEB 5TH!) and we have had some friends offer to be brave and watch Bree and Riley for us so we can have a few hours to go out and celebrate our 3 years of being married. A lot has happened in those three years! Moving states (twice), and two kids later we are still holding strong. We have our issues just like everyone else, but it is our love for one another that brings us back together and we work out whatever the issue was.
Hope this finds everyone happy healthy and in love with life!
Thursday, January 15, 2009
"Rules"
I have had many friends ask who can be around Bree, and what our expectations are for those who do come to visit so I wanted to clarify them here for everyone:
Because her immune system is still not mature it is super important that we take extra precautions to make sure she doesn't get sick at all.
1. So if you have been sick at all, please wait at least a week before you come visit.
2. Also, no one under the age of 16 can handle her until after RSV season ends although they can visit as long as they are healthy.
3. And last, but not least, absolutely everyone has to wash and/or sanitize their hands often.
I hope that helps to answer any questions, and if there are any more please feel free to ask! I would rather have someone ask and receive an answer than to wonder in silence....
Hope this finds everyone happy, healthy, and in love with life!
Because her immune system is still not mature it is super important that we take extra precautions to make sure she doesn't get sick at all.
1. So if you have been sick at all, please wait at least a week before you come visit.
2. Also, no one under the age of 16 can handle her until after RSV season ends although they can visit as long as they are healthy.
3. And last, but not least, absolutely everyone has to wash and/or sanitize their hands often.
I hope that helps to answer any questions, and if there are any more please feel free to ask! I would rather have someone ask and receive an answer than to wonder in silence....
Hope this finds everyone happy, healthy, and in love with life!
"Adult" movies
No, you sick minded person...not that kind of adult movie! I am talking about anything that has a bit of scariness or action in it. We watched Hancock this weekend, and prior to this Riley paid no attention to what we were watching. She would go about her business playing, jumping and running like a normal toddler.
Not this time.
She firmly planted her little booty on the floor and stared up at our TV while Will Smith was crashing through the hospital walls bleeding and fighting bad guys. The whole while she would turn aroung, look at me and go "Mama! mama!" She would turn back to the TV and say "Oh, WWWOOOWWW! Oh no....UH OH!" This repeated until that scene was over. Anytime there was crashing, yelling or any remotely exciting Riley would repeat that process.
I guess we have to start being a little bit more careful about when we watch our "adult" movies....I guess a lot of Disney movies are moving closer into our future.
Not this time.
She firmly planted her little booty on the floor and stared up at our TV while Will Smith was crashing through the hospital walls bleeding and fighting bad guys. The whole while she would turn aroung, look at me and go "Mama! mama!" She would turn back to the TV and say "Oh, WWWOOOWWW! Oh no....UH OH!" This repeated until that scene was over. Anytime there was crashing, yelling or any remotely exciting Riley would repeat that process.
I guess we have to start being a little bit more careful about when we watch our "adult" movies....I guess a lot of Disney movies are moving closer into our future.
Sunday, January 11, 2009
Update, update!
Our girls are doing well and thriving! As I speak, Bree is swinging in her swing very much asleep (mouth wide open), and Riley is suppose to be sleeping but is instead screeching and laughing in her crib. Bree has started this new 'thing'...she cries unless she is being held. Once she falls asleep, sometimes (SOMETIMES) you can lay her down and actually get some stuff done. Today I am getting a sling from my friend Lindsey so hopefully that will help me to have some extra hands. :) With a toddler at home, I can't very well be sitting all the time with Bree.
Poor Mr. Adam....he had his last wisdom tooth pulled on Thursday and has been miserable since. His swelling was suppose to go down in two days and it has not very much at all. He is still taking good old Percocet, so he has been Mr. Sleepy as of lately. He is going into the Dental Clinic in the morning to make sure everything is okay, he is suppose to go back to work, but if he can't go without "perkie" (ha ha we have code names for narcotics) he can't work.
We got a scale yesterday that weighs in ounces so that we can weigh Bree to keep track of her weight gain. It is a two person job. I step on the scale with Bree, get that weight, Adam holds Bree, I weigh myself, then we do some subtraction! As of this morning, Bree weighs 6 lbs, 5 oz.
Hope this finds you happy, healthy, and in love with life!
Poor Mr. Adam....he had his last wisdom tooth pulled on Thursday and has been miserable since. His swelling was suppose to go down in two days and it has not very much at all. He is still taking good old Percocet, so he has been Mr. Sleepy as of lately. He is going into the Dental Clinic in the morning to make sure everything is okay, he is suppose to go back to work, but if he can't go without "perkie" (ha ha we have code names for narcotics) he can't work.
We got a scale yesterday that weighs in ounces so that we can weigh Bree to keep track of her weight gain. It is a two person job. I step on the scale with Bree, get that weight, Adam holds Bree, I weigh myself, then we do some subtraction! As of this morning, Bree weighs 6 lbs, 5 oz.
Hope this finds you happy, healthy, and in love with life!
No one ever told me...
Before I had kids, I could watch scary movies about child abduction, or children being sick and dying with few problems. Yes, I would understand that it would be a hard place to be in if I was that person, but come on, it was a movie/show for goodness sake!
Now, my heart breaks and I end up sobbing over a hour long show. Adam and I were watching the latest episode of Private Practice and it hit home! Now, Adam and I do choose to vaccinate our girls and I do not want to say anything to offend those who choose not to. It is just that, it is a choice that one makes with their family's well being in mind. Well, on the show this mother had three boys and the oldest was autistic. She was convinced that it was the vaccinations that made her oldest autistic so she did not vaccinate her youngest two. Well, one of them got sick with the measles and ended up dying at the end of the show. It felt as though my heart had been ripped out as I thought of being put into the same position.
No one ever told me that you would never be able to watch TV the same again once you became a parent. Every child on TV magically will look like yours, and your heart will break every time something happens to them.
Now, my heart breaks and I end up sobbing over a hour long show. Adam and I were watching the latest episode of Private Practice and it hit home! Now, Adam and I do choose to vaccinate our girls and I do not want to say anything to offend those who choose not to. It is just that, it is a choice that one makes with their family's well being in mind. Well, on the show this mother had three boys and the oldest was autistic. She was convinced that it was the vaccinations that made her oldest autistic so she did not vaccinate her youngest two. Well, one of them got sick with the measles and ended up dying at the end of the show. It felt as though my heart had been ripped out as I thought of being put into the same position.
No one ever told me that you would never be able to watch TV the same again once you became a parent. Every child on TV magically will look like yours, and your heart will break every time something happens to them.
Monday, January 5, 2009
Beginnings and Ends
Today was the end of our every week visits to the eye doctor and the beginning of every two weeks visits. Her ROP has gotten better in her right eye...he mentioned that there was a significant difference between what he saw last week and what it was today. MUCH BETTER! Praise the Lord and thank you for all your prayers and well wishes! There is no sign of the disease at all in her left eye so we are over the halfway point...
It was also the END of the "5 pound, ___ ounces" era and the beginning of the 6 pound baby! Bree weighed exactly 6 pounds 0.5 ounces this morning when the nurse came to visit.
For Riley, it was the end of just giving her an 'unclicked' pen to play with and to trick her into pretend coloring. This morning when the state worker was here enrolling Bree into the Birth to Three program I had given Riley an unclicked pen to keep her entertained. Next thing I know I hear...click, click, click, click..and then she is writing on her shirt! AH! The age of discovery is a wonderous thing...
For me, it was the end of pumping and the beginning of safety for my family. To all of you that may sound a little funky, but whenever I begin to pump Riley knows it is a free for all. She jumps on the couch, (and has fallen off a few times, narrowly missing the coffee table), goes and brings me things from the garbage (ew!), and journeys into her room to pull everything out of her dresser drawers, and then tries to climb into them. Not to mention, Bree seems to know when I am pumping as well and starts to wail almost every time! It is very stressful and not a great environment to pump in. I have been trying it for about a month and it is not possible, (or mentally safe), for me to continue.
For Adam, it is the end of loathing our old couches...and the beginning of new couch heaven for him. We had to get rid of our kitties because Bree was definetly allergic. Cat allergies coupled with poor lungs and a need for oxygen does not equal a happy kid (or happy parents). Each of our cats found a new home, so Adam was able to get the new furniture he wanted. (Tipsy was a furniture scratcher). As I am typing Adam is reclining on our loveseat, watching ESPN and feeding Bree...his eyes glazed over in comfort.
Hope this finds everyone happy, healthy and in love with life!
It was also the END of the "5 pound, ___ ounces" era and the beginning of the 6 pound baby! Bree weighed exactly 6 pounds 0.5 ounces this morning when the nurse came to visit.
For Riley, it was the end of just giving her an 'unclicked' pen to play with and to trick her into pretend coloring. This morning when the state worker was here enrolling Bree into the Birth to Three program I had given Riley an unclicked pen to keep her entertained. Next thing I know I hear...click, click, click, click..and then she is writing on her shirt! AH! The age of discovery is a wonderous thing...
For me, it was the end of pumping and the beginning of safety for my family. To all of you that may sound a little funky, but whenever I begin to pump Riley knows it is a free for all. She jumps on the couch, (and has fallen off a few times, narrowly missing the coffee table), goes and brings me things from the garbage (ew!), and journeys into her room to pull everything out of her dresser drawers, and then tries to climb into them. Not to mention, Bree seems to know when I am pumping as well and starts to wail almost every time! It is very stressful and not a great environment to pump in. I have been trying it for about a month and it is not possible, (or mentally safe), for me to continue.
For Adam, it is the end of loathing our old couches...and the beginning of new couch heaven for him. We had to get rid of our kitties because Bree was definetly allergic. Cat allergies coupled with poor lungs and a need for oxygen does not equal a happy kid (or happy parents). Each of our cats found a new home, so Adam was able to get the new furniture he wanted. (Tipsy was a furniture scratcher). As I am typing Adam is reclining on our loveseat, watching ESPN and feeding Bree...his eyes glazed over in comfort.
Hope this finds everyone happy, healthy and in love with life!
Saturday, January 3, 2009
Pulmonology appt
Yesterday, Bree had her pulmonology appt at PCH. Our good friend, Aleasha, watched Riley for us so that we could concentrate solely on Bree (HUGE thanks girl!)! We met with Dr. O'Hagan, and briefly talked about her oxygen needs and how she has been handling it. Our next conversation was about everything else going on with her: how she cries (loud!), how she eats, how her weight gain has been, and how she has been with peeing and pooping (eh...).
Dr. O'Hagan left the room to go round up our needed consultants after hearing all of our information. So, in came a nurse that was skilled with the oxygen and all those needs. She brought with her an oximeter, and we hooked Bree up and turned off her oxygen. Funny enough, Bree HATED having the oximeter on her foot! (Maybe she figured the past three months was enough to last her a lifetime!) She screamed, kicked and fussed so much that it was hard to get a good reading. No amount of shooshing, jostling, swinging or consoling could calm her down. After the test period, the nurse went to consult with Dr. O'Hagan about what his reccomendations will be.
Next came the dietician. Due to Bree's problems with gaining weight, we discussed all that she was getting. What it was, the frequency she was eating and how she does with burping and "urping". Bree was on a 27 calorie per ounce diet. It is breastmilk fortified with Enfamil Enfacare. The dietician put Bree on an additional fortifier which now makes her 'meals' 30 calories per ounce. The new 'adder inner' is called Duocal, and can only be purchased online. For right now, we have about a twenty day supply given to us. So Bree's cocktail is now 180 cc's (6 ounces) of breastmilk, four teaspoons of Enfacare, and a teaspoon and half of Duocal. We mix that all up and use it as needed for her feeds. We go through about two six ounce bottles every 24 hours. We now have to call and give the dietician Bree's weights after our nurse comes to the house so that her weight gain can be tracked. We need to see if this increase is going to help her gain weight, or if something else needs to be tried.
The pulmonology nurse came back in after the dietician visit and since Bree did pretty good with her test. She was able to keep her oxygen saturations above 85 even with the screaming and fussing (which is what they want to see). However, since Bree is having issues with gaining weight, they do not want to stress her body anymore than they need to so we are going to wait on weaning her off the oxygen for a few weeks. We are doing an overnight study on January 23rd. This consists of us hooking her up to oximeter when she goes to bed for the night and taking her off of her oxygen. For a good 6-8 hours, we will monitor her saturations. In the morning, the machine will be sent to PCH and they will pull all the data and it will take about a week for them to consult with everyone to be able to make the best move for Bree.
Time will tell what will happen and all we can do is trust God and pray!
Hope this finds everyone happy, healthy, and in love with life!
Dr. O'Hagan left the room to go round up our needed consultants after hearing all of our information. So, in came a nurse that was skilled with the oxygen and all those needs. She brought with her an oximeter, and we hooked Bree up and turned off her oxygen. Funny enough, Bree HATED having the oximeter on her foot! (Maybe she figured the past three months was enough to last her a lifetime!) She screamed, kicked and fussed so much that it was hard to get a good reading. No amount of shooshing, jostling, swinging or consoling could calm her down. After the test period, the nurse went to consult with Dr. O'Hagan about what his reccomendations will be.
Next came the dietician. Due to Bree's problems with gaining weight, we discussed all that she was getting. What it was, the frequency she was eating and how she does with burping and "urping". Bree was on a 27 calorie per ounce diet. It is breastmilk fortified with Enfamil Enfacare. The dietician put Bree on an additional fortifier which now makes her 'meals' 30 calories per ounce. The new 'adder inner' is called Duocal, and can only be purchased online. For right now, we have about a twenty day supply given to us. So Bree's cocktail is now 180 cc's (6 ounces) of breastmilk, four teaspoons of Enfacare, and a teaspoon and half of Duocal. We mix that all up and use it as needed for her feeds. We go through about two six ounce bottles every 24 hours. We now have to call and give the dietician Bree's weights after our nurse comes to the house so that her weight gain can be tracked. We need to see if this increase is going to help her gain weight, or if something else needs to be tried.
The pulmonology nurse came back in after the dietician visit and since Bree did pretty good with her test. She was able to keep her oxygen saturations above 85 even with the screaming and fussing (which is what they want to see). However, since Bree is having issues with gaining weight, they do not want to stress her body anymore than they need to so we are going to wait on weaning her off the oxygen for a few weeks. We are doing an overnight study on January 23rd. This consists of us hooking her up to oximeter when she goes to bed for the night and taking her off of her oxygen. For a good 6-8 hours, we will monitor her saturations. In the morning, the machine will be sent to PCH and they will pull all the data and it will take about a week for them to consult with everyone to be able to make the best move for Bree.
Time will tell what will happen and all we can do is trust God and pray!
Hope this finds everyone happy, healthy, and in love with life!
Thursday, January 1, 2009
Little cutie Riley
So, I need to get these things written down before I forget! Riley has been doing some SUPER cute and amazing things this past week. I am sure you all will enjoy them just as much as I have:
1. "High chair? High chair?" Riley has exploded in language as of lately! She now says high chair, all done, Sissy (as in sister), baby, cookie...the list goes on and on.
2. She now gives Bree high fives. She lifts Bree's arm up, then lets go of it and gives her a quick high five while squealing in delight at the same time!
3. Today, I took Riley shopping with me and after parking in our parking spot I had to find my shopping list. The radio was still playing and on the song it was singing "Baby, baby, bayyybeeeee". Next thing you know I hear "Bay-bee, Bay-bee" coming from the backseat. I immediately said "Aww, are you singing?" (not expecting a response) "YUP!" says Riley emphatically...too cute!
4. Riley will run towards you with arms stretched out saying "HHHUUUUGGGG!" and then tackle you at full force. I am surprised I have not been knocked over yet!
5.This one is the best! Bree has her monitor that if the cord is stepped on, the wires become loose and make a very VERY loud screeching noise. Well, Riley stepped on it today and Adam came to rescue when the noise started. After it was fixed, Riley sat down in front of the monitor, and started lifting it up to look at it all the while repeating "Oh sh*t, Oh sh*t, CAP (crap), Oh no!"
Hope that put a smile on your face...I know it did ours!
1. "High chair? High chair?" Riley has exploded in language as of lately! She now says high chair, all done, Sissy (as in sister), baby, cookie...the list goes on and on.
2. She now gives Bree high fives. She lifts Bree's arm up, then lets go of it and gives her a quick high five while squealing in delight at the same time!
3. Today, I took Riley shopping with me and after parking in our parking spot I had to find my shopping list. The radio was still playing and on the song it was singing "Baby, baby, bayyybeeeee". Next thing you know I hear "Bay-bee, Bay-bee" coming from the backseat. I immediately said "Aww, are you singing?" (not expecting a response) "YUP!" says Riley emphatically...too cute!
4. Riley will run towards you with arms stretched out saying "HHHUUUUGGGG!" and then tackle you at full force. I am surprised I have not been knocked over yet!
5.This one is the best! Bree has her monitor that if the cord is stepped on, the wires become loose and make a very VERY loud screeching noise. Well, Riley stepped on it today and Adam came to rescue when the noise started. After it was fixed, Riley sat down in front of the monitor, and started lifting it up to look at it all the while repeating "Oh sh*t, Oh sh*t, CAP (crap), Oh no!"
Hope that put a smile on your face...I know it did ours!
Tuesday, December 30, 2008
Measurements, shots and poop
Both the girls had check ups today with their pediatrician, Dr. Pham. Oldest goes first!
Riley is 23 lbs and about 32'' tall. For weight she is in the 50th percentile and for height she is in the 75th to 80th. He is not at all worried that she is still using bottles and wants to wait a little bit before we start phasing them out since we are having so many changes in our family as of lately. This was the first dr. visit in a long time that during the exam she did not cry. She just sat there and looked at him as he listened to her heart, looked in her eyes and then looked in her ears. I was so proud! She did get her 15 month shots today, which there were three of them. After some tears and crying (and some snuggling with Mama) she was able to walk out of the office on her own steam.
Now onto Bree...she weighed 5 lbs 10 oz and that was only a weight gain of 4 ounces in two weeks. He would like to see her gain at least a half an ounce a day. Since he can't increase her calorie intake (she's already at the max) we are going to be watching her weight very closely. If she continues in this pattern we may be looking at having a feeding tube put in again. She was 19 inches long, and is doing pretty well in all other aspects.
We are having issues with her pooping (every parent's favorite topic of discussion). She is not doing it on her own for some reason. So we have been instructed to give her a suppository every three days. Right now, it has been five days and she has not gone since christmas. We know it is bothering her because she was up over half the night last night (and we were too!). So needless to say, I am exceptionally tired today. I never thought I would say this, but I am excited to give her a suppository today because it means that we will all get WONDERFUL blessed sleep tonight. (Hopefully Riley complies with this too!)
Hope this finds everyone happy, healthy, and in love with life!
Riley is 23 lbs and about 32'' tall. For weight she is in the 50th percentile and for height she is in the 75th to 80th. He is not at all worried that she is still using bottles and wants to wait a little bit before we start phasing them out since we are having so many changes in our family as of lately. This was the first dr. visit in a long time that during the exam she did not cry. She just sat there and looked at him as he listened to her heart, looked in her eyes and then looked in her ears. I was so proud! She did get her 15 month shots today, which there were three of them. After some tears and crying (and some snuggling with Mama) she was able to walk out of the office on her own steam.
Now onto Bree...she weighed 5 lbs 10 oz and that was only a weight gain of 4 ounces in two weeks. He would like to see her gain at least a half an ounce a day. Since he can't increase her calorie intake (she's already at the max) we are going to be watching her weight very closely. If she continues in this pattern we may be looking at having a feeding tube put in again. She was 19 inches long, and is doing pretty well in all other aspects.
We are having issues with her pooping (every parent's favorite topic of discussion). She is not doing it on her own for some reason. So we have been instructed to give her a suppository every three days. Right now, it has been five days and she has not gone since christmas. We know it is bothering her because she was up over half the night last night (and we were too!). So needless to say, I am exceptionally tired today. I never thought I would say this, but I am excited to give her a suppository today because it means that we will all get WONDERFUL blessed sleep tonight. (Hopefully Riley complies with this too!)
Hope this finds everyone happy, healthy, and in love with life!
Monday, December 29, 2008
Faith Motto
"Trust in God with all your heart
No matter what you do.
Lean on him during hard times
and He will see you through"
No matter what you do.
Lean on him during hard times
and He will see you through"
Eye, eye, eye!!!
So today we had another eye appt for Bree with Dr. Golub. He is the doctor who did her laser eye surgery for her ROP and we have a standing date with him every Monday. (Okay, so it's not really a "date") Bree's left eye is doing great and he said today that it looks as though there is a complete recession of the disease. Her right eye is a different story. There are some great parts that are healing, while there are other parts that have showed no change for the good or for the bad. There is also a slight retraction of her retina, which is the biggest concern. If it retracts any further, we will be sent to consult with a retina specialist and we will probably be having another surgery of some sort.
Let's all take the time to praise God for his goodness and faithfulness! We thank Him for all that He has done, and we ask that He continue to be with Bree and to help heal her right eye. We would like to avoid all surgeries, but if that's what He has in store for us we will take it and do our best!
Hope this finds everyone happy, healthy, and in love with life!
Let's all take the time to praise God for his goodness and faithfulness! We thank Him for all that He has done, and we ask that He continue to be with Bree and to help heal her right eye. We would like to avoid all surgeries, but if that's what He has in store for us we will take it and do our best!
Hope this finds everyone happy, healthy, and in love with life!
Thursday, December 25, 2008
First Smile
One momentous event for Bree occured on Christmas Eve. We were all getting ready to head off to church service to have Bree dedicated (which went great...and I will post pictures when I get them from our good friend!). Daddy was holding Bree while sitting in the recliner and Riley was standing next to them peeking at Bree. I happened to walk by and made some comment to Bree (I don't remember what it was), but she turned her head, looked at Riley and smiled. It was so precious that she gave her first "awake and aware" smile to her big sister. I can already tell that there is a special bond between these two and I can't wait to watch it grow and blossom over the years to come.
Hitching a Ride....
See...In our family, the women make the men ride on the back of the motorcycle. Rock on Riley!Poor Ethan looked a little scared about Riley's driving skills though...
Happy Birthday Jesus!
We all had a GREAT Christmas today! We all got everything that we had asked Santa for...even little Bree got lots of cool toys. :) As a family we all sang Happy Birthday to Jesus (cheesy I know, but it is important to me)....We hope that you and your family had a joyous and blessed day as well.
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