Today was our PCC appointment. All this meant was a lot of doctors and nurses and care givers in one room having a conversation about our sons care.
We got to the Hospital and first they did our Ultrasound update.
I was a bit sad, Kaiden was doing great I should be excited.
Although he weighed only 2 lbs 0 oz, only in the 25%, which is less than 1/2 of where he was a month ago. His heart rate was 155 bpm. Great news though, my subchronic hemorrhage was starting to dissolve which was great news, this is the first time it has appeared smaller since 12 weeks 1 day when we were diagnosed with that. Kaiden was literally butt down on my cervix they couldn't even get measurements of the cervix. His fluid levels were at 10cm, which is good for now. No dilation in his bowel at this time (although they really couldn't see them his intestines were pushed up by his chest and between his legs. It made if very hard to get a good look which made me nervous.
We were transferred to another room, consultation room they called it where we waited for a surgeon from the peds unit to meet us and discuss our sons diagnosis and the process we were to expect. It was a lot of information to intake. Although it wasn't much different then what I had read.
He broke it down to us that we had, Gastroschisis (duh we already knew that.) Then when our son was to be born there are two ways of fixing him. Option 1- Primary Closure which is where his belly is either A. big enough or B. intestines are small enough to place in his belly without any extra work. Option 2- Secondary Closure which is where they take the silo (The plastic bag) and stich it to the inside of his belly opening, and place the intestines into the bag and over 5-10 days they slowly push the intestines back into his tummy. Either closure ends up with an open wound that is dressed and they allow to close on its own, they will not skin graph him or anything of that nature. They just let him heal. Now they made it huge to me as a mother that when you have a child our instinct is to FEED, FEED, FEED although a baby with this disorder means intestines do not work properly and the baby is not feed for 4-6 weeks depending on care and healing. He discussed he will be on a lot of iv fluids to fight infections, feedings minor and he might need a blood transfusion. He predicts to have 40 of these cases a year and this is really common for him that he understands its hard on a parent, although he ensures our child the best care and they are there to work for our child to make it the easiest possible recovery. On average these babies are in NICU for 1-3 months, this average does not change based on the closure form, either way there are complications no one can predict. There are many things that affect your child's recovery and there is nothing set in stone. Each case is its own and they take it that way. We asked a few questions and after 45 minutes, that was that. He made it seem easy as pie, although we all know it is not.
After my scan we had time to get a bite to eat since we had been running late, and didn't get to eat that morning.
When we checked back into the doctors they put us back in our normal waiting room for maybe 10 minutes and they walked us down a hallway into a meeting room with a table, images of our son and a lot of doctors and nurses.
They welcomed us and just let us know we were going to be discussing the things that have occurred, would occur, what to expect. Genetics doctors were there, Social services was there, nicu doctors and my obgyn team was there.
We started off by just knowledge of our sons diagnosis. That this is something that can be fixed, something that has little to no life long affects. There is nothing a mother or father can do to prevent this. It just happens. (Which is good to know, but it sucks just as much). We discuss my delivery again at the Hospital there, confirmed my induction date of May 29,2015 (37 weeks, if he wasn't here). Then we discussed with the NICU doctors. How there is a team but when he gets there he will have a primary that will follow our son and we can discuss with that doctor so nothing changes from doctor to doctor which is nice. He reassured me when I have our son, they will let me kiss him and get a picture before he is rushed to NICU. Dad can obviously go to NICU with him but I have to get into the recovery unit before I can go see him (hard, hard, hard to deal with). They will wrap him in plastic to keep his intestines wet, and soft so they can get them back into him in the best shape possible. They will get him into surgery anywhere from 1 hour- 24 hours after delivery. From that point it is Kaiden's body and mind will take over and help him recovery, everything is a waiting game. He will have a PIC line for iv, again discussed him being tested a lot for levels while he's iv feeding and this could cause blood to reduce and need blood transfusion. Everything depends on delivery, complications, stability of Kaiden and just how things work out. Nothing else can be predicted. Again rest assured 1-3 months NICU stay, some have been longer but on average that's what they have.
Next genetics talked to us, just said it is not genetic. This does not increase a rate for reoccurrence for us if we have more children and this doesn't increase for our children's kids either. The rest of my blood work that was taken at 12 & 16 weeks showed no signs of any other abnormalities for Kaiden and they do not expect or suspect any other complications to our son. (GREAT NEWS!)
We then discussed with the social worker, we wanted to tour the nicu and the labor and delivery. Which we did next. I HATE I REPEAT HATE the way their labor and delivery is setup, I don't want to have my baby there but its what's best for our son. I just have to hang in there. I am really shocked how small the NICU rooms are there, and I'm so disappointed there isn't even a couch for me to sleep on so I can be with my SON. its heartbreaking. Reality is this isn't what I was expecting at all. I wanted to be there with him, not away from him. It hurts more then anyone could imagine and I am not ready to face this reality of life.
They also provided us with information on where we could stay there, free parking or reduced parking. Things we would need in the future, although I didn't want to focus on that stuff now just wanted the right now, what to expect stuff more than anything.
Next apt is this Thursday- ill be 28 weeks! WOOT. (3RD TRIMESTER)
We got to the Hospital and first they did our Ultrasound update.
I was a bit sad, Kaiden was doing great I should be excited.
Although he weighed only 2 lbs 0 oz, only in the 25%, which is less than 1/2 of where he was a month ago. His heart rate was 155 bpm. Great news though, my subchronic hemorrhage was starting to dissolve which was great news, this is the first time it has appeared smaller since 12 weeks 1 day when we were diagnosed with that. Kaiden was literally butt down on my cervix they couldn't even get measurements of the cervix. His fluid levels were at 10cm, which is good for now. No dilation in his bowel at this time (although they really couldn't see them his intestines were pushed up by his chest and between his legs. It made if very hard to get a good look which made me nervous.
We were transferred to another room, consultation room they called it where we waited for a surgeon from the peds unit to meet us and discuss our sons diagnosis and the process we were to expect. It was a lot of information to intake. Although it wasn't much different then what I had read.
He broke it down to us that we had, Gastroschisis (duh we already knew that.) Then when our son was to be born there are two ways of fixing him. Option 1- Primary Closure which is where his belly is either A. big enough or B. intestines are small enough to place in his belly without any extra work. Option 2- Secondary Closure which is where they take the silo (The plastic bag) and stich it to the inside of his belly opening, and place the intestines into the bag and over 5-10 days they slowly push the intestines back into his tummy. Either closure ends up with an open wound that is dressed and they allow to close on its own, they will not skin graph him or anything of that nature. They just let him heal. Now they made it huge to me as a mother that when you have a child our instinct is to FEED, FEED, FEED although a baby with this disorder means intestines do not work properly and the baby is not feed for 4-6 weeks depending on care and healing. He discussed he will be on a lot of iv fluids to fight infections, feedings minor and he might need a blood transfusion. He predicts to have 40 of these cases a year and this is really common for him that he understands its hard on a parent, although he ensures our child the best care and they are there to work for our child to make it the easiest possible recovery. On average these babies are in NICU for 1-3 months, this average does not change based on the closure form, either way there are complications no one can predict. There are many things that affect your child's recovery and there is nothing set in stone. Each case is its own and they take it that way. We asked a few questions and after 45 minutes, that was that. He made it seem easy as pie, although we all know it is not.
After my scan we had time to get a bite to eat since we had been running late, and didn't get to eat that morning.
When we checked back into the doctors they put us back in our normal waiting room for maybe 10 minutes and they walked us down a hallway into a meeting room with a table, images of our son and a lot of doctors and nurses.
They welcomed us and just let us know we were going to be discussing the things that have occurred, would occur, what to expect. Genetics doctors were there, Social services was there, nicu doctors and my obgyn team was there.
We started off by just knowledge of our sons diagnosis. That this is something that can be fixed, something that has little to no life long affects. There is nothing a mother or father can do to prevent this. It just happens. (Which is good to know, but it sucks just as much). We discuss my delivery again at the Hospital there, confirmed my induction date of May 29,2015 (37 weeks, if he wasn't here). Then we discussed with the NICU doctors. How there is a team but when he gets there he will have a primary that will follow our son and we can discuss with that doctor so nothing changes from doctor to doctor which is nice. He reassured me when I have our son, they will let me kiss him and get a picture before he is rushed to NICU. Dad can obviously go to NICU with him but I have to get into the recovery unit before I can go see him (hard, hard, hard to deal with). They will wrap him in plastic to keep his intestines wet, and soft so they can get them back into him in the best shape possible. They will get him into surgery anywhere from 1 hour- 24 hours after delivery. From that point it is Kaiden's body and mind will take over and help him recovery, everything is a waiting game. He will have a PIC line for iv, again discussed him being tested a lot for levels while he's iv feeding and this could cause blood to reduce and need blood transfusion. Everything depends on delivery, complications, stability of Kaiden and just how things work out. Nothing else can be predicted. Again rest assured 1-3 months NICU stay, some have been longer but on average that's what they have.
Next genetics talked to us, just said it is not genetic. This does not increase a rate for reoccurrence for us if we have more children and this doesn't increase for our children's kids either. The rest of my blood work that was taken at 12 & 16 weeks showed no signs of any other abnormalities for Kaiden and they do not expect or suspect any other complications to our son. (GREAT NEWS!)
We then discussed with the social worker, we wanted to tour the nicu and the labor and delivery. Which we did next. I HATE I REPEAT HATE the way their labor and delivery is setup, I don't want to have my baby there but its what's best for our son. I just have to hang in there. I am really shocked how small the NICU rooms are there, and I'm so disappointed there isn't even a couch for me to sleep on so I can be with my SON. its heartbreaking. Reality is this isn't what I was expecting at all. I wanted to be there with him, not away from him. It hurts more then anyone could imagine and I am not ready to face this reality of life.
They also provided us with information on where we could stay there, free parking or reduced parking. Things we would need in the future, although I didn't want to focus on that stuff now just wanted the right now, what to expect stuff more than anything.
Next apt is this Thursday- ill be 28 weeks! WOOT. (3RD TRIMESTER)