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. :)
Wednesday, November 30, 2011
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..
Subscribe to:
Posts (Atom)