Well Carter has officially been home for one week and in that week we have had a visiting nurse stop by our house, twice. Visited our new pediatrician to get a check in, twice, and meet with Neurology for a cranial ultrasound and talk to the doctors, set up an appointment with plastics to check on Carter's back to see how his wound is looking and what the next steps are to take. It's exhausting.
The whole getting up every three hours to feed him and check up on the house doesn't seem nearly as bad as the ten, no exaggeration, ten phone calls a day I receive from the hospital to set up appointments or confirm appointments, and he hasn't even been home for a week yet! Give Mike and I some time to just be home with him before we have to jump right back into the doctors again. We know and understand that doctors in Carter' life is going to be a lifelong journey; but please give us at least one day without calling to remind us of every appointment necessary.
Positive notes on having so many appointments... we know how Carter is doing and growing constantly. Last week when he came home Carter weighed 6 pounds 4 ounces and from that day (Thursday the 30th) to our home visit on Tuesday the 4th Carter now weighs 7 pounds and 1 ounce! What great progress this little man has made in just one week. I am very happy, as is Mike, with his success and growth. When he left the hospital he was eating 50cc's every three hours, which is about 1.8 ounces. He is now, as of today eating 70cc's every three hours, which is almost 2.5 ounces... what a tough guy. :)
Now onto the important news; his neuro appointment. On Thursday Mike, Carter, and I had a very long day. We left the house at 8:00am and headed to Mott's and we didn't get home until 1:00pm. Needless to say, we were all pooped but we received some good news, along with some bad, or news we were hoping to not have to hear.
At Carter's cranial ultrasound we found that his ventricles have remained stable, which is good because there wasn't an increase, but at this stage in Carter's life the doctors would like to see a decrease and not just remain stable. Here is why; Carter's ventricles are still pretty big and although he has remained stable and can handle this he may not be able to as time goes by. His doctor spoke to us about this at length explaining that Carter will need this fluid to be drained and it's unlikely that it will happen on its own. Most babies with SB have head sizes that grow rapidly and at a diagonal on the growth chart, Carter's head is growing and although it's not rapid, it is larger than normal and looks as though it is continuing to grow and not stay the same or decrease (with ventricle size). Having said that, for Carter it looks as though he will ultimately need a shunt. The doctor did tell us that this is not an emergency situation right now, where it needs to be placed but most likely over the next month we will have to schedule a date for Carter to go into surgery and have the shunt input into his head. He did tell us that he was okay with waiting to put the shunt in so that we could see if there is still a chance of the ventricles decreasing, but he would hate for us to wait too long and for example, if Carter is in the 2nd grade and getting C's in school think; could this be because we waited to long to shunt?
This all makes sense to Mike and I, and we were very aware that he may need a shunt. My only hesitation to all of this is not because of the surgery aspect, although scary, but because there are a lot of shunt malfunctions and infections that can happen in the first year, and the longer we can wait for Carter to grow and be bigger and stronger, the better his chances will be of not having a malfunction or infection issue. The great news is that Mott's and U of M only has a 2% infection rate, and although it's not zero, it's very low. The bad news is that malfunctions happen often and a shunt could last Carter 30 years but they could also last him only one year or one week, meaning he would need to go back into surgery and have it replaced. This is way I would like to wait so that Carter is older and can handle these surgeries. I mean, the boy isn't even supposed to be born yet! So we are in a waiting game until he has to undergo the surgery.
Okay so after hearing that news Mike and I were hoping for something else to uplift our spirits. This was a lot to hear and take on in one appointment, not to mention we have another appointment scheduled with plastic surgery, orthopedics, physical therapy, and urology next week! We were fortunate to get that news. Even though Carter's Neurosurgeon said that he will need a shunt he also said that with Carter's great leg function and movement he will most likely be a normal walker!!! This was amazing to hear, and even though we aren't 100% sure of this because he still has quite some time before we get to the walking stage in his life, it's possible that he may need little to no assistance with walking. Now, we will still have to work with ortho and the physical therapists to see what they say about his leg function but this was wonderful news to hear after discussing the shunt he will have to have.
Overall Mike, Carter and I have had a of great news with the odds that has been laid in Carter's life. He survived the surgery at only 23 weeks. He made it to 34 weeks gestational to be born at a healthy weight and having no real large preemie issues, which he could have. His back is healing beautifully, he was able to come home after only 20 days in the hospital, he is gaining weight, and he may be a normal walking little boy with Spina Bifida. I am a very happy mom who is lucky to hold my son when he cries for more food and kiss him before each diaper change that holds poop and pee; pee that he can let out himself.
This was a wonderful first week home.
The whole getting up every three hours to feed him and check up on the house doesn't seem nearly as bad as the ten, no exaggeration, ten phone calls a day I receive from the hospital to set up appointments or confirm appointments, and he hasn't even been home for a week yet! Give Mike and I some time to just be home with him before we have to jump right back into the doctors again. We know and understand that doctors in Carter' life is going to be a lifelong journey; but please give us at least one day without calling to remind us of every appointment necessary.
Positive notes on having so many appointments... we know how Carter is doing and growing constantly. Last week when he came home Carter weighed 6 pounds 4 ounces and from that day (Thursday the 30th) to our home visit on Tuesday the 4th Carter now weighs 7 pounds and 1 ounce! What great progress this little man has made in just one week. I am very happy, as is Mike, with his success and growth. When he left the hospital he was eating 50cc's every three hours, which is about 1.8 ounces. He is now, as of today eating 70cc's every three hours, which is almost 2.5 ounces... what a tough guy. :)
Already flexing those muscles to show how big and strong he is!
Now onto the important news; his neuro appointment. On Thursday Mike, Carter, and I had a very long day. We left the house at 8:00am and headed to Mott's and we didn't get home until 1:00pm. Needless to say, we were all pooped but we received some good news, along with some bad, or news we were hoping to not have to hear.
At Carter's cranial ultrasound we found that his ventricles have remained stable, which is good because there wasn't an increase, but at this stage in Carter's life the doctors would like to see a decrease and not just remain stable. Here is why; Carter's ventricles are still pretty big and although he has remained stable and can handle this he may not be able to as time goes by. His doctor spoke to us about this at length explaining that Carter will need this fluid to be drained and it's unlikely that it will happen on its own. Most babies with SB have head sizes that grow rapidly and at a diagonal on the growth chart, Carter's head is growing and although it's not rapid, it is larger than normal and looks as though it is continuing to grow and not stay the same or decrease (with ventricle size). Having said that, for Carter it looks as though he will ultimately need a shunt. The doctor did tell us that this is not an emergency situation right now, where it needs to be placed but most likely over the next month we will have to schedule a date for Carter to go into surgery and have the shunt input into his head. He did tell us that he was okay with waiting to put the shunt in so that we could see if there is still a chance of the ventricles decreasing, but he would hate for us to wait too long and for example, if Carter is in the 2nd grade and getting C's in school think; could this be because we waited to long to shunt?
This all makes sense to Mike and I, and we were very aware that he may need a shunt. My only hesitation to all of this is not because of the surgery aspect, although scary, but because there are a lot of shunt malfunctions and infections that can happen in the first year, and the longer we can wait for Carter to grow and be bigger and stronger, the better his chances will be of not having a malfunction or infection issue. The great news is that Mott's and U of M only has a 2% infection rate, and although it's not zero, it's very low. The bad news is that malfunctions happen often and a shunt could last Carter 30 years but they could also last him only one year or one week, meaning he would need to go back into surgery and have it replaced. This is way I would like to wait so that Carter is older and can handle these surgeries. I mean, the boy isn't even supposed to be born yet! So we are in a waiting game until he has to undergo the surgery.
Okay so after hearing that news Mike and I were hoping for something else to uplift our spirits. This was a lot to hear and take on in one appointment, not to mention we have another appointment scheduled with plastic surgery, orthopedics, physical therapy, and urology next week! We were fortunate to get that news. Even though Carter's Neurosurgeon said that he will need a shunt he also said that with Carter's great leg function and movement he will most likely be a normal walker!!! This was amazing to hear, and even though we aren't 100% sure of this because he still has quite some time before we get to the walking stage in his life, it's possible that he may need little to no assistance with walking. Now, we will still have to work with ortho and the physical therapists to see what they say about his leg function but this was wonderful news to hear after discussing the shunt he will have to have.
Overall Mike, Carter and I have had a of great news with the odds that has been laid in Carter's life. He survived the surgery at only 23 weeks. He made it to 34 weeks gestational to be born at a healthy weight and having no real large preemie issues, which he could have. His back is healing beautifully, he was able to come home after only 20 days in the hospital, he is gaining weight, and he may be a normal walking little boy with Spina Bifida. I am a very happy mom who is lucky to hold my son when he cries for more food and kiss him before each diaper change that holds poop and pee; pee that he can let out himself.
This was a wonderful first week home.
Snickers and Bo already love him and sleep in his room when he is in there.
Hands by the face as he sleeps, melts my heart :)
Sporting some gifts from my Aunt and Uncle, now he just has to grow into them!!
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