momto3g3b
03-15-2006, 01:13 PM
After 11 days in the hospital, 10 of which I didn't get to see my little guy, Joshua is finally home! He came home on Monday, the 13th, but it's taken me a few days to get pictures up and post an update.
Joshua is a great sleeper thus far. He sleeps 4-5 hours at a stretch, around the clock. I was up only once last night (at 4am) after going to bed at 11:30pm and I didn't get up until 8:30 this morning. I guess that's one silver lining of the NICU ~ they get a baby on a schedule pretty well! I'm hoping he continues to sleep so well. It's quite a change from Isaac, who was up at all hours of the day and night from day 1 of his life.
Nursing is not going well at all. I can get Joshua latched on and he'll suck long enough to get a let-down, but then he stops and doesn't seem to know what to do with so much milk coming out of so many holes ('cuz ya know, it only comes out of one hole from a bottle). I can encourage him to suck, but his suck is weak and even when he nurses for 10-15 minutes, he isn't getting much milk. I know this because I can feel that he's not latched on really well, kwim? Also, within 20 minutes of nursing, he's crying to eat again, but if I give him 3.5 to 4 ounces of expressed breastmilk in a bottle, he (slowly) drinks that down and then is content for 4-5 hours.
I had the same problem getting David and Sarah transitioned off of the hospital bottles (which just DRIP milk into their mouths ~ they don't even have to suck to get the milk!). It took me 14 weeks of pumping before they were both exclusively nursing, and they each had only 3 days of bottles. Joshua has had 11 days of bottles, so I am not expecting a miracle of him switching right over to nursing (though that would have been nice). It's just so much more work to breastfeed, ya know, compared with getting a bottle, especially one of the NICU bottles, so I don't blame him for not wanting to nurse. However, I'm determined to keep working on it.
My current plan is to do what I did with David and Sarah....I'm going to spend some time transitioning Joshua to a regular bottle, one that he has to actually SUCK in order to get to the milk. Once he's gotten used to putting some effort into getting fed, I'll start working on getting him to nurse by offering the breast at the beginning of each feeding and then following up (if necessary) with a bottle afterward. I'll continue to pump and feed him expressed breastmilk (I'm thanking God for blessing me with an abundant supply ~ I'm able to pump 60 ounces per day, easily, plus nurse Isaac) until the time comes when he is taking all of his feedings by breast and none by bottle. I don't know how long it will take to get to that point, but I'm not too worried about it. I'm confident he'll get there eventually. Oh! A funny thing ~ he ALWAYS gets the hiccups when he's done eating. I have no idea why this is, but it sure is funny! Thankfully, he doesn't spit up when he hiccups. Charley said he got the hiccups after feeding while in the hospital, too. Joshua is our first baby to do this and we both think it's really cute! LOL
Joshua is still getting Tylenol with codeine for pain management. He's feeling better, though, as evidenced by our not having to give him his medication every 4 hours on the dot. He went for 8 hours last night without meds and did just fine, though when he woke up, he was definitely uncomfortable, poor little guy. His back is healing all right ~ it just looks gross. He can't take a bath for 2 weeks, so it's just sponge-washing until then. He goes to see the pediatrician on Monday and then he goes back to Portland to see the neurosurgeon in 4 weeks, at which point she'll assess his nerve function.
As far as a prognosis, there really isn't one given. Spina bifida doesn't affect every person the same way, and even kids with lesions/defects at the same level of the spine don't necessarily have the same outcomes, so it's very hard to predict how Joshua is going to do. His defect was at L5 (lumbar spine, 5th vertebra) and extended up to L3. We can almost guarantee he'll have bladder and bowel problems since almost 100% of people with spina bifida do, but after that, it's all up in the air. It's reasonable to think Joshua might have reduced sensation in his legs/feet, but we don't know to what extent. It's reasonable to think (based on the level of his lesion) that he could have problems with walking and might need braces/crutches/walker to accomplish this milestone eventually. But again, there's no way to predict in a "for sure" manner. A lot of spina bifida is "wait and see". We wait until Joshua gets old enough that he should be hitting some milestone and then we see if he does it or not and we go from there. This is God's way of teaching me to take life one day at a time, I believe. I've never been too good at doing that, so this will force me to learn that lesson.
Joshua is moving both of his legs, he doesn't have hydrocephalus (and therefore, no shunt) and his lesion/defect was low, which are all really good things in his favor. His form of spina bifida is called lipomyelomeningocele and a good site to read for more information about this form of SB is at http://www.lfsn.org/lipomyel.htm
You can see loads of pictures at http://www.picturetrail.com/davidsarahsurgery. The surgery album has 3 pictures from the surgery, itself, and are graphic, so if that type of thing makes you squirm, don't look at them. There's a second album that has a bunch of pictures from Joshua's hospitalization and homecoming, too.
I'm thrilled to have my baby home and to finally all be together again. :love
Joshua is a great sleeper thus far. He sleeps 4-5 hours at a stretch, around the clock. I was up only once last night (at 4am) after going to bed at 11:30pm and I didn't get up until 8:30 this morning. I guess that's one silver lining of the NICU ~ they get a baby on a schedule pretty well! I'm hoping he continues to sleep so well. It's quite a change from Isaac, who was up at all hours of the day and night from day 1 of his life.
Nursing is not going well at all. I can get Joshua latched on and he'll suck long enough to get a let-down, but then he stops and doesn't seem to know what to do with so much milk coming out of so many holes ('cuz ya know, it only comes out of one hole from a bottle). I can encourage him to suck, but his suck is weak and even when he nurses for 10-15 minutes, he isn't getting much milk. I know this because I can feel that he's not latched on really well, kwim? Also, within 20 minutes of nursing, he's crying to eat again, but if I give him 3.5 to 4 ounces of expressed breastmilk in a bottle, he (slowly) drinks that down and then is content for 4-5 hours.
I had the same problem getting David and Sarah transitioned off of the hospital bottles (which just DRIP milk into their mouths ~ they don't even have to suck to get the milk!). It took me 14 weeks of pumping before they were both exclusively nursing, and they each had only 3 days of bottles. Joshua has had 11 days of bottles, so I am not expecting a miracle of him switching right over to nursing (though that would have been nice). It's just so much more work to breastfeed, ya know, compared with getting a bottle, especially one of the NICU bottles, so I don't blame him for not wanting to nurse. However, I'm determined to keep working on it.
My current plan is to do what I did with David and Sarah....I'm going to spend some time transitioning Joshua to a regular bottle, one that he has to actually SUCK in order to get to the milk. Once he's gotten used to putting some effort into getting fed, I'll start working on getting him to nurse by offering the breast at the beginning of each feeding and then following up (if necessary) with a bottle afterward. I'll continue to pump and feed him expressed breastmilk (I'm thanking God for blessing me with an abundant supply ~ I'm able to pump 60 ounces per day, easily, plus nurse Isaac) until the time comes when he is taking all of his feedings by breast and none by bottle. I don't know how long it will take to get to that point, but I'm not too worried about it. I'm confident he'll get there eventually. Oh! A funny thing ~ he ALWAYS gets the hiccups when he's done eating. I have no idea why this is, but it sure is funny! Thankfully, he doesn't spit up when he hiccups. Charley said he got the hiccups after feeding while in the hospital, too. Joshua is our first baby to do this and we both think it's really cute! LOL
Joshua is still getting Tylenol with codeine for pain management. He's feeling better, though, as evidenced by our not having to give him his medication every 4 hours on the dot. He went for 8 hours last night without meds and did just fine, though when he woke up, he was definitely uncomfortable, poor little guy. His back is healing all right ~ it just looks gross. He can't take a bath for 2 weeks, so it's just sponge-washing until then. He goes to see the pediatrician on Monday and then he goes back to Portland to see the neurosurgeon in 4 weeks, at which point she'll assess his nerve function.
As far as a prognosis, there really isn't one given. Spina bifida doesn't affect every person the same way, and even kids with lesions/defects at the same level of the spine don't necessarily have the same outcomes, so it's very hard to predict how Joshua is going to do. His defect was at L5 (lumbar spine, 5th vertebra) and extended up to L3. We can almost guarantee he'll have bladder and bowel problems since almost 100% of people with spina bifida do, but after that, it's all up in the air. It's reasonable to think Joshua might have reduced sensation in his legs/feet, but we don't know to what extent. It's reasonable to think (based on the level of his lesion) that he could have problems with walking and might need braces/crutches/walker to accomplish this milestone eventually. But again, there's no way to predict in a "for sure" manner. A lot of spina bifida is "wait and see". We wait until Joshua gets old enough that he should be hitting some milestone and then we see if he does it or not and we go from there. This is God's way of teaching me to take life one day at a time, I believe. I've never been too good at doing that, so this will force me to learn that lesson.
Joshua is moving both of his legs, he doesn't have hydrocephalus (and therefore, no shunt) and his lesion/defect was low, which are all really good things in his favor. His form of spina bifida is called lipomyelomeningocele and a good site to read for more information about this form of SB is at http://www.lfsn.org/lipomyel.htm
You can see loads of pictures at http://www.picturetrail.com/davidsarahsurgery. The surgery album has 3 pictures from the surgery, itself, and are graphic, so if that type of thing makes you squirm, don't look at them. There's a second album that has a bunch of pictures from Joshua's hospitalization and homecoming, too.
I'm thrilled to have my baby home and to finally all be together again. :love