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:)
Wednesday, December 21, 2011
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.
Saturday, December 3, 2011
day 11 post op
I first just want to say that Fox is doing well.. despite the complication he has had and the new ones he is faced with he is such a fighter. Sometimes I think.. when will he catch a break?! but then I look and him and see how strong he is and it doesn't even seem to phase him.
So... he still has his drainage tubes in his chest which is apparently a long time to still have them in .. but he did have a delayed chest closer so it didn't seem that odd to me. Well one of his tubes drainage color started to change kinda milky color so they sent it off to the lab and it turns out he has chylothorax. I'm not expecting anyone to know what this is.. but I'm not going to go into too much detail explaining it... Dr. Google can tell you more if you like:)
Basically it is a complication from surgery. During the surgery his thorax was nicked and now when he gets feeds ( his are still from a tube going in to his belly ) the fats or lipids leak out into the space where they shouldn't be... this of course is not good. Surgery might need to be preformed to fix it or if its small it can heal on its own.. he will go on a special low fat formula that is more like just medicine then a true feed but has the same amount of calories. This does usually mean a prolonged stay in hospital. Ugh really? like really? I feel so bad for him and then I look at him and he looks back and it's like he's tell me "Mom I'll be fine don't worry it's nothing, I've been through worse" He is perfect.
On a extremely happy note.... I got to hold him yesterday! it was one of the best feelings in my life he slept in my arms for 2 hours!!! he knew I was his mom and trusted me even after everything he has gone through I know he feels loved and that is so comforting to know.
And to top it off Brandon and the kids and Grandma are coming down today I'm so over the moon with excitement to see my other loves!
Despite the doctors choosing to leave him on the ventilator for a couple more days this will be an awesome day:)
So... he still has his drainage tubes in his chest which is apparently a long time to still have them in .. but he did have a delayed chest closer so it didn't seem that odd to me. Well one of his tubes drainage color started to change kinda milky color so they sent it off to the lab and it turns out he has chylothorax. I'm not expecting anyone to know what this is.. but I'm not going to go into too much detail explaining it... Dr. Google can tell you more if you like:)
Basically it is a complication from surgery. During the surgery his thorax was nicked and now when he gets feeds ( his are still from a tube going in to his belly ) the fats or lipids leak out into the space where they shouldn't be... this of course is not good. Surgery might need to be preformed to fix it or if its small it can heal on its own.. he will go on a special low fat formula that is more like just medicine then a true feed but has the same amount of calories. This does usually mean a prolonged stay in hospital. Ugh really? like really? I feel so bad for him and then I look at him and he looks back and it's like he's tell me "Mom I'll be fine don't worry it's nothing, I've been through worse" He is perfect.
On a extremely happy note.... I got to hold him yesterday! it was one of the best feelings in my life he slept in my arms for 2 hours!!! he knew I was his mom and trusted me even after everything he has gone through I know he feels loved and that is so comforting to know.
And to top it off Brandon and the kids and Grandma are coming down today I'm so over the moon with excitement to see my other loves!
Despite the doctors choosing to leave him on the ventilator for a couple more days this will be an awesome day:)
Wednesday, November 30, 2011
Chest is closed!
Yesterday was attempted number 2 at closing baby Fox's chest it was a success for the most part and I couldn't be more relieved! With the first attempt being Sunday and that being a totally disater I was incredibly nervous to have them attempt again so soon after he crashed. However he has to have his chest closed to get home.. I mean I don't think his future classmates would take to kindly to seeing his heart all out there like that ;) bring a whole new meaning to wearing your heart on your sleeve.
He looks so much more comfortable with his chest closed.. It was open for 7 days, a lot longer than ever expected but Fox has a complex coronary atatomy. Of course right? poor man. So while his chest is now closed there seems to be another mystery to unravel .... so that means we aren't going home anytime soon. His Sats are in the 80's and that's not ideal usually even when they "fix" a heart the sats will be above 95 % His little feet and hands sometimes look at little blue because the heart is shunting and mixing blood in places it shouldn't. They are giving him a couple more days to see if it fixes it's self however if it doesn't they will have to do something more invasive and that could mean more open heart surgery. Although if all of his other numbers are good (some of his blood work is still a little wonky) then they would hopefully wait til he was older. He is still on the ventilator and of course I am dying for them to take him off of it. I'm hoping that they slowly start weening him off in the next few days and that his little body tolerates it and his sats don't go more down.
At least we are making progress slow and ready that's good enough for me. How ever long Foxy needs I will be here waiting for him to come home with me and join our family so we can become a new family of 5.
Every day all day I just sit with him, I can't wait til he is awake and I can interact with him.
I have never been more emotional or tired in my entire life, I can't imagine how he feels. I keep telling him life is so much more that the intesive care unit. What brings some peace is knowing that he won't remeber any of this, for me of course I will always remeber but I would never want to forget about how my son fought for his life. As tough as it is this is the only way that I can bring my sweet love home with me.
He really amazes me every minute of every day. I know Tripp and Everly-Rose are just gonna be the greatest big brother and big sister ever. :)
He looks so much more comfortable with his chest closed.. It was open for 7 days, a lot longer than ever expected but Fox has a complex coronary atatomy. Of course right? poor man. So while his chest is now closed there seems to be another mystery to unravel .... so that means we aren't going home anytime soon. His Sats are in the 80's and that's not ideal usually even when they "fix" a heart the sats will be above 95 % His little feet and hands sometimes look at little blue because the heart is shunting and mixing blood in places it shouldn't. They are giving him a couple more days to see if it fixes it's self however if it doesn't they will have to do something more invasive and that could mean more open heart surgery. Although if all of his other numbers are good (some of his blood work is still a little wonky) then they would hopefully wait til he was older. He is still on the ventilator and of course I am dying for them to take him off of it. I'm hoping that they slowly start weening him off in the next few days and that his little body tolerates it and his sats don't go more down.
At least we are making progress slow and ready that's good enough for me. How ever long Foxy needs I will be here waiting for him to come home with me and join our family so we can become a new family of 5.
Every day all day I just sit with him, I can't wait til he is awake and I can interact with him.
I have never been more emotional or tired in my entire life, I can't imagine how he feels. I keep telling him life is so much more that the intesive care unit. What brings some peace is knowing that he won't remeber any of this, for me of course I will always remeber but I would never want to forget about how my son fought for his life. As tough as it is this is the only way that I can bring my sweet love home with me.
He really amazes me every minute of every day. I know Tripp and Everly-Rose are just gonna be the greatest big brother and big sister ever. :)
Saturday, November 26, 2011
Brave little Fox
I haven't really had much time at all to update on my blog, but things are going in the right direction.
Fox had his open heart surgery tuesday, he was 5 days old. His ox stats were down in the 50's then 40's then even right before they wisked him off they went down into the 20's. It was time for the surgery thank god he was going in the OR room his body wasn't really responding to the PGE meds anymore.
It goes without saying that, that Tuesday was the toughest day of my life. It was so hard and I was completely helpless, I couldn't fix his heart, and I had to trust the surgerical team too. We were told around 4-6 hours without any updates... omg I didn't relized they wouldn't update that was even more torture. The thought of my brave little man on the table cut open unconcious on the bypass machine was horrific. then as time passed so did the est time we were now approaching the 8th hour... and then the nurse came out. I was shaking .. the screen in the waiting room still said he was in the OR why is she coming out already? what's wrong? Well turns out he almost didn't make it (although we found this out later, glad she didn't tell us.) he was a bleeder as they call it and they thought they would need about 3 more hours. I don't think I stoped crying until I saw him 13 hours after we left him. he endured 11 hours of surgery. WOW how is that possible I truely feel as though he is ment to be part of our family, we need him just as much as he needs us.
That night that I got to see him was a lot harder than I thought. He looked lifeless. I won't go into to much detail on that .. because to be honest I don't really like to think about it.. he was even cold to touch and not much color.
He is now 4 days post-op and doing surprisingly well, for all that he struggled with during the operation the Surgeron and other Dr's are really impressed. Although he still has a long road ahead he is stable and with issues but none as big as before. They are taking about closing his chest tomorrow. That will mark day 5 of his chest being open that is crazy..... He still is not breathing on his own and he is still sedated but he is my hero. He reminds me of his daddy and brother and little sister they are all my hero and all so strong.
Brandon is with the kids back home and I feel like I have a huge whole in my heart. This is the toughest thing I have ever gone through. Honestly way tougher than I had even imagined. But that being said I know we will make it through it and I'm so proud of my family.
Fox had his open heart surgery tuesday, he was 5 days old. His ox stats were down in the 50's then 40's then even right before they wisked him off they went down into the 20's. It was time for the surgery thank god he was going in the OR room his body wasn't really responding to the PGE meds anymore.
It goes without saying that, that Tuesday was the toughest day of my life. It was so hard and I was completely helpless, I couldn't fix his heart, and I had to trust the surgerical team too. We were told around 4-6 hours without any updates... omg I didn't relized they wouldn't update that was even more torture. The thought of my brave little man on the table cut open unconcious on the bypass machine was horrific. then as time passed so did the est time we were now approaching the 8th hour... and then the nurse came out. I was shaking .. the screen in the waiting room still said he was in the OR why is she coming out already? what's wrong? Well turns out he almost didn't make it (although we found this out later, glad she didn't tell us.) he was a bleeder as they call it and they thought they would need about 3 more hours. I don't think I stoped crying until I saw him 13 hours after we left him. he endured 11 hours of surgery. WOW how is that possible I truely feel as though he is ment to be part of our family, we need him just as much as he needs us.
That night that I got to see him was a lot harder than I thought. He looked lifeless. I won't go into to much detail on that .. because to be honest I don't really like to think about it.. he was even cold to touch and not much color.
He is now 4 days post-op and doing surprisingly well, for all that he struggled with during the operation the Surgeron and other Dr's are really impressed. Although he still has a long road ahead he is stable and with issues but none as big as before. They are taking about closing his chest tomorrow. That will mark day 5 of his chest being open that is crazy..... He still is not breathing on his own and he is still sedated but he is my hero. He reminds me of his daddy and brother and little sister they are all my hero and all so strong.
Brandon is with the kids back home and I feel like I have a huge whole in my heart. This is the toughest thing I have ever gone through. Honestly way tougher than I had even imagined. But that being said I know we will make it through it and I'm so proud of my family.
Friday, November 18, 2011
Fox's journey begins
Our brave little man was born november 17, at 1:12pm weighing in at 7 lbs 14oz and 21 inches long! Good size! And he was crying! Yay his cry didn't sound normal tho more grunty and he was very blue. He oxygen stats were in the 30's and he needed to go on cpap. They had trouble getting a line in for the PGE meds that keep his PDA hole in his heart open so that his heart mixes blood. We got to see him before they transferred him to sick kids. I touched his hand for the first time, it was wonderful! I just got stitched up so I was still laying down I only saw the top of his head. But it was the cutest top of a head ever:)
I am not having an easy or even normal recovery after the c-section. Turns out a major deep muscle on the right side of my abdomen was torn pretty bad and the surgeon repaired it for me so I have to be super careful for 2 months. Also I had an excessive amount of blood loss and pain that was so unbearable, they tried every drug and nothing was working just making me sick everywhere. So they ended up having to locally numb some major nerves by a ultrasound guide so I would have some relief. Because of my complications the doctor refused to allow me to go see Fox that night and I had to wait til the next morning at nine. I begged and pleaded and he said he could stop me but doesn't think its safe, I did try and sit up tho and just passed out. The wait til nine the next morning was almost unbearable, but somehow I made it through! And when the moment came that I got to see Fox it was overwhelming he is so strong and covered in wires. Having trouble breathing and still on the cpap machine. They almost had to
Put him on a ventilator bur tried increasing the cpap to the max and that seems to gave stoped the apnea episodes. He had 5 episodes in an hour! They said that is not good at all. My husband and I got to hold little Fox it was amazing.I was only holding him for a few mins when he stopped breathing and they had to take him from me.
On happy ending to today tho, they increased his cpap to the max and so far no more apnea spells. I got to hold him again later today and he is so precious, it's happy times but hard. His poor little face is so swollen because he is on heart failure and he hasn't been able to open his eyes yet. His eyes look like frog eyes just always shut. Poor love, I can't wait to see his beautiful eyes.
I am not having an easy or even normal recovery after the c-section. Turns out a major deep muscle on the right side of my abdomen was torn pretty bad and the surgeon repaired it for me so I have to be super careful for 2 months. Also I had an excessive amount of blood loss and pain that was so unbearable, they tried every drug and nothing was working just making me sick everywhere. So they ended up having to locally numb some major nerves by a ultrasound guide so I would have some relief. Because of my complications the doctor refused to allow me to go see Fox that night and I had to wait til the next morning at nine. I begged and pleaded and he said he could stop me but doesn't think its safe, I did try and sit up tho and just passed out. The wait til nine the next morning was almost unbearable, but somehow I made it through! And when the moment came that I got to see Fox it was overwhelming he is so strong and covered in wires. Having trouble breathing and still on the cpap machine. They almost had to
Put him on a ventilator bur tried increasing the cpap to the max and that seems to gave stoped the apnea episodes. He had 5 episodes in an hour! They said that is not good at all. My husband and I got to hold little Fox it was amazing.I was only holding him for a few mins when he stopped breathing and they had to take him from me.
On happy ending to today tho, they increased his cpap to the max and so far no more apnea spells. I got to hold him again later today and he is so precious, it's happy times but hard. His poor little face is so swollen because he is on heart failure and he hasn't been able to open his eyes yet. His eyes look like frog eyes just always shut. Poor love, I can't wait to see his beautiful eyes.
Friday, November 4, 2011
Less than 2 weeks!
I had my last appt in Toronto before I deliver our son. The appts took all day so tiring. The whole process of stabilizing the baby after birth is terrifying.
I still feel like I have lots of time before my faimly and I go through this journey. But then I look at a calendar and realize I dont have a ton of time left.
Things are starting to fall in place and I know we can get through this, I just feel so bad for my little man he doesn't know what's comming like we do.
He is doing well in my belly I wish he would come out healthy, every parent wants their baby to be healthy I don't get that but I'm blessed that we will be at one of the best hospitals that hopefully can make him healthy. Although we are going to have to go through hell and back to get our son it's worth it, and we are so lucky to have him coming into our lives.
I still feel like I have lots of time before my faimly and I go through this journey. But then I look at a calendar and realize I dont have a ton of time left.
Things are starting to fall in place and I know we can get through this, I just feel so bad for my little man he doesn't know what's comming like we do.
He is doing well in my belly I wish he would come out healthy, every parent wants their baby to be healthy I don't get that but I'm blessed that we will be at one of the best hospitals that hopefully can make him healthy. Although we are going to have to go through hell and back to get our son it's worth it, and we are so lucky to have him coming into our lives.
Thursday, September 22, 2011
It's real
Well it's official my second son will be born Nov 16 @ 9 am!
I'm on the train heading back home as and I still feel overwhelmed tons of info that I'm still processing. 8 hours of appointments, and I still couldnt meet everyone I apparently need to so I'm going back in six weeks.... Ugh
My sweet baby boy will have his open heart surgery at around 5 days old. And a Medicine called prostoglandins will be given to him in an iv (these drugs will keep him alive until he is ready for surgery) He also might need a surgery a day after birth to help the mixing of the blood until his open heart surgery. He is going to be transferred to sick kids after birth and daddy will go with him while I'm stuck at the other hospital, that's going to be tough they said they will bring me over to see him the next day.... I hate that he's mine and we need each other but it's because I have to have a csection.
Everyone at sick kids was so nice and my mum and I got a tour of the areas we will be in. I got to be honest I found it tougher than I thought seeing thoses other sick heart babies and parents half asleep in the waiting room waiting to hear how their baby was doing was close to unbareable. But you can really see the amazing care that theses babies/ kids and their families recieve and that's very comforting. Anyways there was so much information but that's the main stuff. He looks otherwise healthy so that's great!
I'm on the train heading back home as and I still feel overwhelmed tons of info that I'm still processing. 8 hours of appointments, and I still couldnt meet everyone I apparently need to so I'm going back in six weeks.... Ugh
My sweet baby boy will have his open heart surgery at around 5 days old. And a Medicine called prostoglandins will be given to him in an iv (these drugs will keep him alive until he is ready for surgery) He also might need a surgery a day after birth to help the mixing of the blood until his open heart surgery. He is going to be transferred to sick kids after birth and daddy will go with him while I'm stuck at the other hospital, that's going to be tough they said they will bring me over to see him the next day.... I hate that he's mine and we need each other but it's because I have to have a csection.
Everyone at sick kids was so nice and my mum and I got a tour of the areas we will be in. I got to be honest I found it tougher than I thought seeing thoses other sick heart babies and parents half asleep in the waiting room waiting to hear how their baby was doing was close to unbareable. But you can really see the amazing care that theses babies/ kids and their families recieve and that's very comforting. Anyways there was so much information but that's the main stuff. He looks otherwise healthy so that's great!
Saturday, September 3, 2011
Limbo
Limbo....That's where I am... and that's where I will stay most likely until my baby boy arrives.
It's fun to buy baby clothes right?!... Yes and No.. I can't stop thinking.. when will he be able to wear this? How much is he going to weigh when he gets out of the hospital? Is this going to bother his incision/scar? I still get excited it's just mixed with worry.
I also am counting down the days until I go to Toronto. So many questions that hopefully will have answers. The thing I have realized every appt I get more info I then have questions. I'm guessing they will tell me when about he will be born and also when I have to come down to Toronto and "camp out" until he is born. Those are my main questions right know I really would like to know because I do have 2 small children and I need to have a good plan.
On a related note I saw my MFM doctor the other day. It's so strange going from a Midwife to OB to High risk OB everything is so impersonal. It's just not me. But this is what has to be done so I'll do it. Of course they changed my due date.. by 9 days so I am now due Dec 1st... there goes my Dec baby :( I know I'm strange I would just rather keep him in there. I feel no rush for him to come out. But of course I'm so excited to meet him.
The Limbo feeling also hits when it comes down to does he have any chromosomal disorders? I worry more because I don't know what to expect not because I expect to love him any less. It's just a waiting game and I HATE waiting.
We are are going to Disney World in a week for 5 days so that's gonna be a good family vacation where I can temporally let go of all my worry and just enjoy the moment.
Overall I am doing better I feel good and I am just staying as positive as I can. I know it's hard for my husband he feels like more of an outsider I sometimes do forget that its hard for him to and he is going through it as well. He still hasn't really felt the baby move so hopefully I can make that happen soon.. because it is the best feeling in the world!
It's fun to buy baby clothes right?!... Yes and No.. I can't stop thinking.. when will he be able to wear this? How much is he going to weigh when he gets out of the hospital? Is this going to bother his incision/scar? I still get excited it's just mixed with worry.
I also am counting down the days until I go to Toronto. So many questions that hopefully will have answers. The thing I have realized every appt I get more info I then have questions. I'm guessing they will tell me when about he will be born and also when I have to come down to Toronto and "camp out" until he is born. Those are my main questions right know I really would like to know because I do have 2 small children and I need to have a good plan.
On a related note I saw my MFM doctor the other day. It's so strange going from a Midwife to OB to High risk OB everything is so impersonal. It's just not me. But this is what has to be done so I'll do it. Of course they changed my due date.. by 9 days so I am now due Dec 1st... there goes my Dec baby :( I know I'm strange I would just rather keep him in there. I feel no rush for him to come out. But of course I'm so excited to meet him.
The Limbo feeling also hits when it comes down to does he have any chromosomal disorders? I worry more because I don't know what to expect not because I expect to love him any less. It's just a waiting game and I HATE waiting.
We are are going to Disney World in a week for 5 days so that's gonna be a good family vacation where I can temporally let go of all my worry and just enjoy the moment.
Overall I am doing better I feel good and I am just staying as positive as I can. I know it's hard for my husband he feels like more of an outsider I sometimes do forget that its hard for him to and he is going through it as well. He still hasn't really felt the baby move so hopefully I can make that happen soon.. because it is the best feeling in the world!
Tuesday, August 30, 2011
The News ...
I am currently 25 weeks pregnant and at 20 weeks I went in for the usual scan to make sure the baby is growing as it's suppose to and that everything is "normal" With my last two pregnancies we also found out the sex at this time but with this being our last we wanted to try to keep it a surprise. The scan went great! so we thought....
4 days later I went for regular OB appointment to find out the ultrasound came out "abnormal" they couldn't see the babies Great arteries cross and they needed to see that in order for it to be a passing ultrasound. Okay I thought no biggie the babe wasn't in a good position anyways and the tech had trouble seeing the heart so I thought. Plus this stuff happens to "other people" not us?!
2 Fetal echo scans later... and 2 meetings with pediatric cardiologists my world stopped.
At that point it was best for us to find out the sex of our precious 3rd baby... A BOY! over the moon excited! Tripp is going to have a brother and Everly-Rose another brother and a big sister! However hearing the diagnosis of the our newest son was awful. He has Transposition of the great arteries, A large VSD ( hole in the heart) Double Outlet right ventricle and a small aorta that is narrowing. As the Pedi Cardio is telling us everything with the pictures she drew my eyes start to well.. my body shake and my husband in silence.. I can no longer understand a word that she is telling me ... all I hear is... critically ill...newborn open heart surgery in order to survive ... and then the the acid on the burn... " we can't have you deliver in Ottawa this is too severe of a case you'll need to have your baby in Toronto and the operation will be done at sick kids" WHAT? but this is my home! this is the place I feel safe and the place I feel familiar with and now my baby is going to be in the hospital for a length of time I'm still unsure of.. our family will be broken up at times.... not what I wanted to hear but I know our Son will get the best care at sick kids.. it's just hard. When I heard her say Toronto .. it really sank in how serious this was and the water works flowed.
I know I need to be strong for my unborn child and my husband and kids but this is horrible... you never really realize how strong you are until you have to be.. and this is what I'm hoping will kick in for me when I deliver our sick son.
I go down to Toronto to meet the doctors the end of September that will save our son and the doctors that will deliver him. All the appointments take the entire day from 8am til 6pm and I will have to stay 2 nights.. It breaks my heart to be away from my kids but they can't come and my hubby has to work as we literally just get back from our family vacation to Disney World.
So this is where we are right now.. frozen .. until I get more information that will bring more questions..
4 days later I went for regular OB appointment to find out the ultrasound came out "abnormal" they couldn't see the babies Great arteries cross and they needed to see that in order for it to be a passing ultrasound. Okay I thought no biggie the babe wasn't in a good position anyways and the tech had trouble seeing the heart so I thought. Plus this stuff happens to "other people" not us?!
2 Fetal echo scans later... and 2 meetings with pediatric cardiologists my world stopped.
At that point it was best for us to find out the sex of our precious 3rd baby... A BOY! over the moon excited! Tripp is going to have a brother and Everly-Rose another brother and a big sister! However hearing the diagnosis of the our newest son was awful. He has Transposition of the great arteries, A large VSD ( hole in the heart) Double Outlet right ventricle and a small aorta that is narrowing. As the Pedi Cardio is telling us everything with the pictures she drew my eyes start to well.. my body shake and my husband in silence.. I can no longer understand a word that she is telling me ... all I hear is... critically ill...newborn open heart surgery in order to survive ... and then the the acid on the burn... " we can't have you deliver in Ottawa this is too severe of a case you'll need to have your baby in Toronto and the operation will be done at sick kids" WHAT? but this is my home! this is the place I feel safe and the place I feel familiar with and now my baby is going to be in the hospital for a length of time I'm still unsure of.. our family will be broken up at times.... not what I wanted to hear but I know our Son will get the best care at sick kids.. it's just hard. When I heard her say Toronto .. it really sank in how serious this was and the water works flowed.
I know I need to be strong for my unborn child and my husband and kids but this is horrible... you never really realize how strong you are until you have to be.. and this is what I'm hoping will kick in for me when I deliver our sick son.
I go down to Toronto to meet the doctors the end of September that will save our son and the doctors that will deliver him. All the appointments take the entire day from 8am til 6pm and I will have to stay 2 nights.. It breaks my heart to be away from my kids but they can't come and my hubby has to work as we literally just get back from our family vacation to Disney World.
So this is where we are right now.. frozen .. until I get more information that will bring more questions..
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