Well.. Last Thursday he was weighed and lost a couple more onces. WHY !? I honestly feel like I'm doing everything I can do and he still is a tooth pick! Will he ever be a big boy like Tripp?! I don't know and it doesn't matter Fox is Fox and Tripp is Tripp. But no one can convince me that a baby losing weight is normal ! The doctors do not think this is normal and are very concerned. Actually his new Doc is amazing and calls me on a daily bases. Since we agreed to deal with his issues out patient she wants to make sure he's okay:) What I don't need to hear is a friends of friends of this girls co workers daughter who is such weight etc etc..These situations aren't mine, he wasn't small he was freaking born 8 lb as 36 weeks! And hasn't gained a single oz in 8 weeks! And has lost weight, he's not "small for his age" he's not thriving... This kills me. I feel like I'm failing him.
Tonight when I was changing Fox, Tripp and Everly were pointing at his scar saying "boo boo" and "oh no" like usual. Then Tripp ( newly in love with numbers) started counting Fox's ribs. My baby:(
Well his next weigh in is Thursday but he's been "off" and not eating the 33-35 oz they need him too. I don't think he has lost much more though because I think his body has platoed. He is now on another hyperhallogenic formula but fortified to 24 kal. I'm basically writing this week off. Fingers and toes crossed he doesn't really lose tho:(
My posts are so depressing lately but this is our reality. This is always in the back of my mind. However amazingly Fox is right on track developmently and is even standing up leaning / holding on ( if u put him there, he can't pull him self up,obv.) We fill our days will swimming lessons, Sunday breakfasts with best friends, park trips, choo choo trains, crafts, visits to the toddler gym, shopping trips, lots of walks etc... Everything is perfect expect my youngest sons health.
Tuesday, April 17, 2012
Tuesday, April 10, 2012
Another hospital stay:(
After taking the kids to Star gym on weds I got a call from the cardio fellow. She was calling to follow up with me about Fox and his next apt with a new pedi for his weight loss. After she agreed 3 weeks was way to long to wait. She said she was gonna consult with his actual card dr. Laheed and see what she felt. Well that's when I got the call despite seeing him on the Monday and not admitting him they changed their minds and felt like he needed to be admitted that day! After telling them I wasn't on board since we haven't tried anything at home yet. His card nurse Susan was the one who convinced me to take my sweet boy in. We are home now but while in hospital he lost 100 g ( that's 4oz ) they tried him put on milk based high kal formula. He is normally on soy based. Anyways he took 4 oz and was then puking and screaming bloody murder. He screamed in pain for over 2 hours we tried a heat pad and eventually had to give him some pain meds. I felt like I failed him:( I knew this would happen ( not to that extend ) but they talked me in to it and said he probobally doesn't have a really allergy.....WRONG he does in deed have one. In fact now they are saying its severe enough that he shouldn't he on anything but hypohallogenic formula. Not that I'm complaining but this kids is the most expensive kid ever;) so in short the Doctor doesn't know what's going on with him yet but doesn't want to do extensive testing if he just needs more cals. So she came up with a number of 40 oz . That's a lot. I'm hoping this works but as I'm feeding him this at home I can already telling its not sustainable. He eats all the time to get 40 in 24 hr so he's not always hungry. I dont understand why not fortified feeds yet. Ugh frustrated. I'm taking Fox in on thursday to see her for a weigh in. There is NO WAY he's lost weight eating this much... I can't wait to see how much he weighs.... It's killing me. FINGERS CROSSED!
Oh a happy note we still had s great Easter. The "Easter bunny" brought Tripp and Everly Rose a place house along with the tradition goodies.
I love my Family:)
Oh and I must mention how awesome my Mom is for ALWAYS dropping her life everytime FOX is in the hospital to help with the kids while Brandon's working and I'm with Fox.
Oh a happy note we still had s great Easter. The "Easter bunny" brought Tripp and Everly Rose a place house along with the tradition goodies.
I love my Family:)
Oh and I must mention how awesome my Mom is for ALWAYS dropping her life everytime FOX is in the hospital to help with the kids while Brandon's working and I'm with Fox.
Wednesday, March 28, 2012
Cardiologist puts foot down!
So the pedi appointment went.... really no where. I do however understand more of where he is coming from. He feels like it is heart related, and that the Cards have access to all the specialist that he needs to see. But for him to order those things it could take months. Here is where I still have a problem....Is he incapable of picking the phone up or faxing something to the cardiologists and them working as a team? seriously ? Why do I even take him to this guy? he does shit. Any concerns that arise he says take him to the card...even when its his job to do something. UGH!
He reluctantly made a referral to a GI Doctor but said it will take months to get in. When we all left and got in the car I decided I was sticking to my goal I had set yesterday, Getting Fox the appropriate care he needs. So I called his Cardiology nurse (she is the best ) She had just talked to Fox's Cardiologist and told her everything that is going on and the back and forth from Doctors. She is referring him to a new pedi and is seeing him on Monday. She also is setting up Fox with a nutritionist. So I feel better that things are gonna start happening They did tell me that when they weigh him on Monday if he hasn't gained a single oz he will be admitted. I'm crossing my fingers that I can get him to gain at least a tad if not more!
On a lovely side note. I am amazed everyday at how sweet my kids are! Last night I put Fox down on the play mat and Every followed suit and then Tripp, they were all giggling. I'm so in love<3
He reluctantly made a referral to a GI Doctor but said it will take months to get in. When we all left and got in the car I decided I was sticking to my goal I had set yesterday, Getting Fox the appropriate care he needs. So I called his Cardiology nurse (she is the best ) She had just talked to Fox's Cardiologist and told her everything that is going on and the back and forth from Doctors. She is referring him to a new pedi and is seeing him on Monday. She also is setting up Fox with a nutritionist. So I feel better that things are gonna start happening They did tell me that when they weigh him on Monday if he hasn't gained a single oz he will be admitted. I'm crossing my fingers that I can get him to gain at least a tad if not more!
On a lovely side note. I am amazed everyday at how sweet my kids are! Last night I put Fox down on the play mat and Every followed suit and then Tripp, they were all giggling. I'm so in love<3
Monday, March 26, 2012
long over due
I kinda bailed on blogging, I could blame it on having 3 kids 2.5 and under being busy and I have no time to myself...but that's not really true. I've just not in mood because Fox's health is so up and down.
First off I want to say that being a mom of 3 is amazing! Tripp and Everly-Rose and the best older siblings and we fill are days with outings, crafts, gym time, and baking/cooking. Tripp still calls Fox "Boo Boo" due to his scar on his chest. He does say Fox.. but it sounds exactly like F*$%, so I'm not really pushing that ;)
I'm not going to go into grave detail in about the last few months because that would be the longest blog ever. In short Fox has been in and out of the hospital since being home. He had his genetic testing done for Cystic Fibrosis (since he tested positive in the newborn screening for possibly having it) and he doesn't. Major relief!
He has gone from sleeping 36 hrs straight to having seizures and endless amounts of testing. Just when we got all that sorted, he is peeing buckets! and lost almost 1/2 a kilo in 4 days (4 weeks ago) and has since gained none of it back. I don't want to point anyone out so I'll just say. I'm feeling like Fox is being Bounced from Doc to Doc. The Cardio is very concerned, about the weight loss issue and says it needs to be handled by the pedi. But the Pedi think it should be handled by the card. See..? it's like they are playing a game of ping pong with my sons health. I don't care who gets the ball rolling but for F sake its be 4 weeks with NO weight gain. I'm not waiting around any longer and watching him lose weight. What kind of mother would I be? I'm taking all 3 kids to the pedi tomorrow and I'm putting my foot down. Wish me luck?
Being a Mom of 2 healthy children, I feel so blessed. I feel so blessed that Fox is with us and 4 months old now. Now my goal is to get him healthy.
First off I want to say that being a mom of 3 is amazing! Tripp and Everly-Rose and the best older siblings and we fill are days with outings, crafts, gym time, and baking/cooking. Tripp still calls Fox "Boo Boo" due to his scar on his chest. He does say Fox.. but it sounds exactly like F*$%, so I'm not really pushing that ;)
I'm not going to go into grave detail in about the last few months because that would be the longest blog ever. In short Fox has been in and out of the hospital since being home. He had his genetic testing done for Cystic Fibrosis (since he tested positive in the newborn screening for possibly having it) and he doesn't. Major relief!
He has gone from sleeping 36 hrs straight to having seizures and endless amounts of testing. Just when we got all that sorted, he is peeing buckets! and lost almost 1/2 a kilo in 4 days (4 weeks ago) and has since gained none of it back. I don't want to point anyone out so I'll just say. I'm feeling like Fox is being Bounced from Doc to Doc. The Cardio is very concerned, about the weight loss issue and says it needs to be handled by the pedi. But the Pedi think it should be handled by the card. See..? it's like they are playing a game of ping pong with my sons health. I don't care who gets the ball rolling but for F sake its be 4 weeks with NO weight gain. I'm not waiting around any longer and watching him lose weight. What kind of mother would I be? I'm taking all 3 kids to the pedi tomorrow and I'm putting my foot down. Wish me luck?
Being a Mom of 2 healthy children, I feel so blessed. I feel so blessed that Fox is with us and 4 months old now. Now my goal is to get him healthy.
Wednesday, December 21, 2011
Becoming Fox's Mom
A lot has happened since my last up dated.. things move so fast it was hard to keep up. First off Fox is HOME!!!!!
But before he got discharged he had more surprises for us before he was ready to be sent home. Right when his lungs were looking great and the Docs we ready (literally during rounds) to discharge him from the critical care and up to the step down cardiac floor, Fox's heart skipped right from 140bpm to 258bmp. It was terrifying they tired many things to bring it down and nothing was working so they ended up using electricity to "pace" his heart back sticking a probe down his nose and close to his heart and shocking or pacing his heart to speed up his heart so that is all the rhythms would catch up and start back at his normal rate. It took a few tries but it worked. He had 3 of these episodes, they called them arterial flutters. They started him on propranolol to help lower and regulate his heart rate. Eventually it looked like it started to work. And then his heart rate started to drop from 130 to the 80's and then jump back up. They call his bradycardia. His heart rate still leaps around so there is something wrong with his electrical circuit. I'm really hoping that it settles out and is controlled with drugs or he would need a pace maker. But for right now his body is tolerating it and the heart drugs are working to help control the episodes to a reasonable level.
When the Doctor told me he was gonna be discharged I started to cry as soon as she left the room. I was so happy and his whole month long journey the ups and the downs flashed through my body. Getting ready to leave was a blur.... there wsa so much information and getting his drug schedule all worked. He had to pass a car seat test, where he sits in the car seat for a hour and they check to see how much his sats drop. He passed and we were finally on our way home!
The whole train ride I found myself trying to hid my tears, I was so excited and I just overwhelmed with everything was my little Fox has gone through. I mean really no mother should see their child's heart and lungs. It was a scary start to life, but he made it through. Thanks to all sick kids, the nurses the Doctors , and the surgeons esp Dr. Van Arsdell who saved Fox's life. What do you say to someone like that... Thank you .. but that doesn't feel even close to enough. Without the support of my Family and Friends and everyone who was praying for Fox and sending good vibes I would have not been able to get through this. THANK YOU.
The first couple days home have been a dream come true such a Christmas miracle! I LOVE being back home with Tripp and Everly-Rose, and Brandon they are so fun, and loving. I'm so blessed!
Fox has his Cystic Fibrosis test tomorrow and they said we will know the results by friday.. I'm nervous but whatever it is I know we can get through anything!
On Friday he has his first Cardiology appointment at CHEO. I will keep updating...I know Fox needs more surgery in the near future and then more after that. His Journey has really just begun but I know he will continue to be a fighter and get through each hurdle one at a time:)
But before he got discharged he had more surprises for us before he was ready to be sent home. Right when his lungs were looking great and the Docs we ready (literally during rounds) to discharge him from the critical care and up to the step down cardiac floor, Fox's heart skipped right from 140bpm to 258bmp. It was terrifying they tired many things to bring it down and nothing was working so they ended up using electricity to "pace" his heart back sticking a probe down his nose and close to his heart and shocking or pacing his heart to speed up his heart so that is all the rhythms would catch up and start back at his normal rate. It took a few tries but it worked. He had 3 of these episodes, they called them arterial flutters. They started him on propranolol to help lower and regulate his heart rate. Eventually it looked like it started to work. And then his heart rate started to drop from 130 to the 80's and then jump back up. They call his bradycardia. His heart rate still leaps around so there is something wrong with his electrical circuit. I'm really hoping that it settles out and is controlled with drugs or he would need a pace maker. But for right now his body is tolerating it and the heart drugs are working to help control the episodes to a reasonable level.
When the Doctor told me he was gonna be discharged I started to cry as soon as she left the room. I was so happy and his whole month long journey the ups and the downs flashed through my body. Getting ready to leave was a blur.... there wsa so much information and getting his drug schedule all worked. He had to pass a car seat test, where he sits in the car seat for a hour and they check to see how much his sats drop. He passed and we were finally on our way home!
The whole train ride I found myself trying to hid my tears, I was so excited and I just overwhelmed with everything was my little Fox has gone through. I mean really no mother should see their child's heart and lungs. It was a scary start to life, but he made it through. Thanks to all sick kids, the nurses the Doctors , and the surgeons esp Dr. Van Arsdell who saved Fox's life. What do you say to someone like that... Thank you .. but that doesn't feel even close to enough. Without the support of my Family and Friends and everyone who was praying for Fox and sending good vibes I would have not been able to get through this. THANK YOU.
The first couple days home have been a dream come true such a Christmas miracle! I LOVE being back home with Tripp and Everly-Rose, and Brandon they are so fun, and loving. I'm so blessed!
Fox has his Cystic Fibrosis test tomorrow and they said we will know the results by friday.. I'm nervous but whatever it is I know we can get through anything!
On Friday he has his first Cardiology appointment at CHEO. I will keep updating...I know Fox needs more surgery in the near future and then more after that. His Journey has really just begun but I know he will continue to be a fighter and get through each hurdle one at a time:)
Monday, December 12, 2011
Roller coaster
Parents and Doctors who have gone through and seen what these heart babies go through told me that it would be a Roller coaster ride and it is. I feel like Fox is on one of those old woodden one's- The type that thrill seekers enjoy and it's rattling around joilting you left to right, bumpy, and sometimes when you finally get off the ride it leaves you buised. I feel like that kid who got tricked on going on the ride and is screaming to get off and can't wait to be on soild ground again. I think every parent would be that kid screaming to get off... but I'm still holding on.
Where do I begin ...really I should write my blogs more often because so much changes for him in just a few hours. Last time I posted I said he got another collasped lung and developed pneuomia.... literally 30 mins later they tell me his blood culture came back (they said it would take days but it already started to grow something 12 hours later!) he has a blood infection I can't remeber what it's called it sounds like cockeye haha.. no but really some of these medical terms are so funny.
His lung and blood infection looks like it will take a couple weeks to fully clear up. The other thing that came up the next morning when I came in honeslty pissed me off.. The damn night nurse, who I can't go without saying seemed a little off I don't know why, she was nice enough but just I felt something was amiss with her. Turns out the lady just left Fox basically all night on his right side...because he was sleeping so well.. ugh he always sleeps but he wont even really wake up if you just move him to turn him. But you HAVE to turn them if they have infectious fluid in their lungs because their lungs are sticky and if compressed for too long they collapse... So YES the stupid nurse gave my son a right lung collaspe. As if he didn't have enough on his plate. BUT wait I'm not finished I still have a little more rant left... The pharmacy messed up big time.. now I say big time because a mess up like that could of killed him.. luckily he was okay. They filled the doctors order for one of the antibiotics filled it with the WRONG antibiotic and labled it WRONG so it was labled as if it was the proper antibiotic. The nurse checked it.. it said what is was suppose to be and she gave it to them. Hours later they figure out it was the wrong medicine. THANK GOD it was just an antibiotic.. but still what if he was allergic to it? A women came in and explained the whole thing to me and told me there was going to be an investigation on the women who did it and how it happed and that she is on probation for now. This freaked me out!.. as she was telling me this my son was getting a blood transfusion and I made her check to make sure it was the right blood.. esp since he is 0-, She assured me it was a one in a million chance that this happend and that they will bring with inccident up at the safety meeting this week. That didn't make me feel better.
He isn't tollerating his feeds as well as he is .. but on this one I feel like they are overacting a bit I think he has an upset tummy. Other than that big news!!! they took him off the ventilator about an hour ago but we still have to wait 4 hours til they feed him he hasnt eaten since 12pm he must be starved! poor man. But they just want to make sure that he doesn't have to be re-intubated. As of when they kicked me out of the room he was under that cube box oxygen thing. I hope when they let us back in in 15 mins his still is doing good.. I get so nervous.
So that's most of the Fox updates.
I really enjoyed seen my family this weekend but it kills me when they are gone. I honestly feel like I can't handle this much more. I asked today about getting Fox transferred to CHEO but that seems to be a no go.. but I'll keep bugging.
Tripp and Everly-Rose need their mommy too... :( I feel like I'm choosing Fox over them sometimes, but I don't have choice he needs me more now then ever... and I just hope that the kids will understand that. And as Everly-Rose and Tripp go up and we talk about this time I hope they never feel like I left them. I hope they realize I want to be with them so badly. Every night I think about ways I could make it work better for everyone, but I just can't come up with one.
I also hope my husband realizes what a great dad he is and how much he is doing for this family and that me and Fox miss him.
5 more days til I see them again:(
Where do I begin ...really I should write my blogs more often because so much changes for him in just a few hours. Last time I posted I said he got another collasped lung and developed pneuomia.... literally 30 mins later they tell me his blood culture came back (they said it would take days but it already started to grow something 12 hours later!) he has a blood infection I can't remeber what it's called it sounds like cockeye haha.. no but really some of these medical terms are so funny.
His lung and blood infection looks like it will take a couple weeks to fully clear up. The other thing that came up the next morning when I came in honeslty pissed me off.. The damn night nurse, who I can't go without saying seemed a little off I don't know why, she was nice enough but just I felt something was amiss with her. Turns out the lady just left Fox basically all night on his right side...because he was sleeping so well.. ugh he always sleeps but he wont even really wake up if you just move him to turn him. But you HAVE to turn them if they have infectious fluid in their lungs because their lungs are sticky and if compressed for too long they collapse... So YES the stupid nurse gave my son a right lung collaspe. As if he didn't have enough on his plate. BUT wait I'm not finished I still have a little more rant left... The pharmacy messed up big time.. now I say big time because a mess up like that could of killed him.. luckily he was okay. They filled the doctors order for one of the antibiotics filled it with the WRONG antibiotic and labled it WRONG so it was labled as if it was the proper antibiotic. The nurse checked it.. it said what is was suppose to be and she gave it to them. Hours later they figure out it was the wrong medicine. THANK GOD it was just an antibiotic.. but still what if he was allergic to it? A women came in and explained the whole thing to me and told me there was going to be an investigation on the women who did it and how it happed and that she is on probation for now. This freaked me out!.. as she was telling me this my son was getting a blood transfusion and I made her check to make sure it was the right blood.. esp since he is 0-, She assured me it was a one in a million chance that this happend and that they will bring with inccident up at the safety meeting this week. That didn't make me feel better.
He isn't tollerating his feeds as well as he is .. but on this one I feel like they are overacting a bit I think he has an upset tummy. Other than that big news!!! they took him off the ventilator about an hour ago but we still have to wait 4 hours til they feed him he hasnt eaten since 12pm he must be starved! poor man. But they just want to make sure that he doesn't have to be re-intubated. As of when they kicked me out of the room he was under that cube box oxygen thing. I hope when they let us back in in 15 mins his still is doing good.. I get so nervous.
So that's most of the Fox updates.
I really enjoyed seen my family this weekend but it kills me when they are gone. I honestly feel like I can't handle this much more. I asked today about getting Fox transferred to CHEO but that seems to be a no go.. but I'll keep bugging.
Tripp and Everly-Rose need their mommy too... :( I feel like I'm choosing Fox over them sometimes, but I don't have choice he needs me more now then ever... and I just hope that the kids will understand that. And as Everly-Rose and Tripp go up and we talk about this time I hope they never feel like I left them. I hope they realize I want to be with them so badly. Every night I think about ways I could make it work better for everyone, but I just can't come up with one.
I also hope my husband realizes what a great dad he is and how much he is doing for this family and that me and Fox miss him.
5 more days til I see them again:(
Saturday, December 10, 2011
Steps back
Well.. I wish I was able to give a good update... but as quickly as things got better then turned for the worse again..
fox came off the ventilator on sunday morning and was doing well... Monday night he was doing well enough to come out of critical care. It was amazing I had tears of joy when I saw him in his private room and I was able to be with him 24/7 I felt like I "normal" Mommy. I felt like I was taking care of him for the first time. Then on Weds I noticed something wasn't right he was working really hard to breathe. It was retracting each breathe under his ribs, he looked pale. He was desating into the 70's and back up into the high 80's they put him on more oxygen and thought that fixed it but my Mommy instincts were so strong. This wasn't my baby's norm he was struggling why couldn't they see what I saw?
fast forward after dinner time and Doctors coming to check on him because he was starting to turn blue... everything went kinda fast after that. They bagged him and started breathing for him they did an xray and it showed his left lung collapsed. That was it he was rushed back to critical care. My poor man... the whole time down he held on tight to me finger.
Fast forward to today.... I'll skip over somethings because it would take me to long to explain everything and I need to get back in to see Fox.
He has pneuomia and asperated his feed into his lungs he has another infection in his lungs as well and as of this morning his other lung collasped as in lower left lope. His echo he had yestday shows some problems with the pulomary arteries and they are going to wait a couple days to see how he does.. if they is no change he might have to have more surgery.
On top of all of this his newborn screening came back positive for Cystic Fibrosis.. with a 2.5% chance of actually having it.. this has nothing to do with his heart.. but seriously how unlucky health wise can he be? They want to rule it out because he did end up back on a ventilator but the doctors still don't think he actually has it. I have come to terms with the fact that I can't control his health .. I can't make him better... BUT I can and will make sure he gets the best help and treatment that he can get. Our whole family will be there every step of the way for him and I want to make every day and every momment count for this little man. I love him so much and I can't wait for the day I will get to take him home.
fox came off the ventilator on sunday morning and was doing well... Monday night he was doing well enough to come out of critical care. It was amazing I had tears of joy when I saw him in his private room and I was able to be with him 24/7 I felt like I "normal" Mommy. I felt like I was taking care of him for the first time. Then on Weds I noticed something wasn't right he was working really hard to breathe. It was retracting each breathe under his ribs, he looked pale. He was desating into the 70's and back up into the high 80's they put him on more oxygen and thought that fixed it but my Mommy instincts were so strong. This wasn't my baby's norm he was struggling why couldn't they see what I saw?
fast forward after dinner time and Doctors coming to check on him because he was starting to turn blue... everything went kinda fast after that. They bagged him and started breathing for him they did an xray and it showed his left lung collapsed. That was it he was rushed back to critical care. My poor man... the whole time down he held on tight to me finger.
Fast forward to today.... I'll skip over somethings because it would take me to long to explain everything and I need to get back in to see Fox.
He has pneuomia and asperated his feed into his lungs he has another infection in his lungs as well and as of this morning his other lung collasped as in lower left lope. His echo he had yestday shows some problems with the pulomary arteries and they are going to wait a couple days to see how he does.. if they is no change he might have to have more surgery.
On top of all of this his newborn screening came back positive for Cystic Fibrosis.. with a 2.5% chance of actually having it.. this has nothing to do with his heart.. but seriously how unlucky health wise can he be? They want to rule it out because he did end up back on a ventilator but the doctors still don't think he actually has it. I have come to terms with the fact that I can't control his health .. I can't make him better... BUT I can and will make sure he gets the best help and treatment that he can get. Our whole family will be there every step of the way for him and I want to make every day and every momment count for this little man. I love him so much and I can't wait for the day I will get to take him home.
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