Well to start out with good news (for a change) Grant passed the hearing test in both ears now! YAY! I was way excited about that. Also Monday he met with the pediatrician, and he's gained about an ounce per day since his last visit. That is awesome! So he was 7 lbs. 14 oz., equal to Lincoln's birthweight. What a champ!
OK enough exclamation points. Now the rest of it.
We saw a second cornea specialist Monday afternoon. We were expecting to go in and have him detail what will happen during a transplant, answer our questions and possibly even just check Grant into the hospital for surgery prep that day or set up for us to do that in 1-2 days. Instead he came in, told us he'd been in touch extensively with our pediatric opthamolagist and the cornea specialist over the weekend looking through Grant's chart as well as Lincoln's. In his opinion, he thought an immedate surgery would be really jumping the gun. His preference is to monitor it closely the next 5-6 months and perhaps it will clear up (to some degree) like Linc's did. Then we'd see if a surgery is still nessacary.
The thing is, this is a surgery that on infants has a very high likelihood of rejecting and causing irreperable damage. Once it's done it can't be undone just re-done. On the other hand, if an infant goes too long after birth without vision, at some point the brain just shuts off it's ability to process vision even if the eyes get fixed. After that point it cannot be restarted, it's that way for life. It's very uncertain when that point is. But the drs seem confident that it's not happened yet. So it's this HUGE hard choice to make on behalf of our little Grant, is when to get this done. And we hear from one guy last week,"Do it next week. Soon." and then from another guy,"We can wait a few months and he'll probably be better off if we don't do this in haste."
It's been really hard to decide who is right, what we should do. We're still not any closer to deciding. So we thought a 3rd and 4th opinion may help. But who knows, maybe then we'll just have 4 differing opinions to select from instead of 2. Whatever. Sunday night we're going to fly to LA and meet a doctor there and one in San Diego, return home Tuesday morning. We're even going to try to visit some family while in sunny CA. And we'll update as soon as we can about how that goes.
Got pictures. Will post those tomorrow.
Friday, October 24, 2008
Friday, October 17, 2008
Grant's health
Well here's the skinny on it. Take a look at the left, at Grant's cloudy beautiful baby blue eyes at 2 days old. Newborns usually don't have cloudy eyes like that, but it's the norm in my family. I had it, so did my brothers, and Lincoln and Grant. But Grant's are far worse than anyone else's were. It's been determined that he cannot see much except lights. Soooo...... very soon maybe as soon as next week, he's up for a double cornea transplant. We meet with the surgeon Monday, and as long as together we can figure out an option that won't leave him worse off then he was before the surgery, we'll be going into the OR. We really really hope and pray he'll be able to see after the surgery, that it'll be successful and not reject and he can not have this setback for his whole lifetime.
Wow. What a downer I am, I totally started with the worst news. If you want to, start here and read down. Then read that above paragraph. Sorry bout that!
Grant has the same heart problems Lincoln was born with. We thought we were all clear this time, since no murmur was detected at the hospital. But no, it just took a little while to make any noise that's all. It's a PDA and an ASD, just like Lincoln's. You can Google those terms if you want to, I don't feel like explaining it all. When Linc was barely a year old, he had a small outpatient surgery where they put a cath into a vein at the top of his leg, ran it carefully all the way to his heart, then put a thing in there which closed off the open arteries and that's all there is to it. It's seriously, SERIOUSLY minor as far as heart surgeries go. Grant will have that done in a year unless there's the unlikely event that Cardiology determines it needs to be done sooner.
This'll be just fine and it's literally nothing I haven't done before. However, telling Mike's family there's another grandchild with (albeit minor) heart problems just weeks after they lost an infant family member (Mike's sweet nephew Ben) to heart and respiratory failure...... well, that's not fun for any of us. Makes me feel very insensitive when I tell them, but they do want to know so I've just tried to minimize it as no big deal, especially when telling the parents. Because it's true actually! It's not a big deal.
Finally, Grant after 2 tries has had only one of his ears pass the newborn hearing screening. My cousin Jessica assures me that's somewhat normal, and I'm gonna take her educated word for it. Another rescreen is scheduled for next week, and I think (hopefully) it'll come back good this time. I can't think on that too much right now, I have too much else to deal with obviously. So I'm just for now assuming that's going to be fine.
Other than a thrush diaper rash that required a couple prescriptions to quickly clear up, that's all. He breathes eats sleeps poops cries. Just my perfect, sweet little baby boy!
Grant is so adorable. Just so tiny and sweet. Sleeps a lot, eats every few hours, takes medicines without complaint, only cries when he's hungry or Lincoln is being obnoxious to him. I am really really lucky. After waiting so long, I am so glad he's here! His blessing was last Sunday (pictures pending), and whenever I take him out (mostly to the dr. or to Babies R' Us) I usually hear how adorable/sweet/small and precious he is, with exclamations about "All that hair on his head!".
We love him so much, and really do consider him pretty healthy. Blindness is not really a health issue, it's an issue of functionality. Neither is deafness or half deafness. It just makes you have to adapt differently to your surroundings. We'd like Grant to be able to function in the world as much as possible, which seems to have a lot of driving, reading, computers, etc. The heart problems..... well, that sucks really. But at least they are easily fixable ones. Compared to lots of people we got off way easy. I am so glad he was "Granted" to us by Heavenly Father. Even with all the office visits recently (10 since we left the hospital, and it's just beginning) we feel so blessed to have him here.
Wow. What a downer I am, I totally started with the worst news. If you want to, start here and read down. Then read that above paragraph. Sorry bout that!
Grant has the same heart problems Lincoln was born with. We thought we were all clear this time, since no murmur was detected at the hospital. But no, it just took a little while to make any noise that's all. It's a PDA and an ASD, just like Lincoln's. You can Google those terms if you want to, I don't feel like explaining it all. When Linc was barely a year old, he had a small outpatient surgery where they put a cath into a vein at the top of his leg, ran it carefully all the way to his heart, then put a thing in there which closed off the open arteries and that's all there is to it. It's seriously, SERIOUSLY minor as far as heart surgeries go. Grant will have that done in a year unless there's the unlikely event that Cardiology determines it needs to be done sooner.
This'll be just fine and it's literally nothing I haven't done before. However, telling Mike's family there's another grandchild with (albeit minor) heart problems just weeks after they lost an infant family member (Mike's sweet nephew Ben) to heart and respiratory failure...... well, that's not fun for any of us. Makes me feel very insensitive when I tell them, but they do want to know so I've just tried to minimize it as no big deal, especially when telling the parents. Because it's true actually! It's not a big deal.
Finally, Grant after 2 tries has had only one of his ears pass the newborn hearing screening. My cousin Jessica assures me that's somewhat normal, and I'm gonna take her educated word for it. Another rescreen is scheduled for next week, and I think (hopefully) it'll come back good this time. I can't think on that too much right now, I have too much else to deal with obviously. So I'm just for now assuming that's going to be fine.
Other than a thrush diaper rash that required a couple prescriptions to quickly clear up, that's all. He breathes eats sleeps poops cries. Just my perfect, sweet little baby boy!
Grant is so adorable. Just so tiny and sweet. Sleeps a lot, eats every few hours, takes medicines without complaint, only cries when he's hungry or Lincoln is being obnoxious to him. I am really really lucky. After waiting so long, I am so glad he's here! His blessing was last Sunday (pictures pending), and whenever I take him out (mostly to the dr. or to Babies R' Us) I usually hear how adorable/sweet/small and precious he is, with exclamations about "All that hair on his head!".
We love him so much, and really do consider him pretty healthy. Blindness is not really a health issue, it's an issue of functionality. Neither is deafness or half deafness. It just makes you have to adapt differently to your surroundings. We'd like Grant to be able to function in the world as much as possible, which seems to have a lot of driving, reading, computers, etc. The heart problems..... well, that sucks really. But at least they are easily fixable ones. Compared to lots of people we got off way easy. I am so glad he was "Granted" to us by Heavenly Father. Even with all the office visits recently (10 since we left the hospital, and it's just beginning) we feel so blessed to have him here.
Monday, October 13, 2008
pictures
Hey maybe I should post on this thing again, since that's what it's here for and everything....
Just been busy lately. That's a good way to sum up. Here's my slogan lately:
"I feel like if I want to have time to get dressed every day, I'd have to sleep in my clothes."
I'll do a bit more postings soon once I can speak more definitively about Grant's health and what will be done. If you aren't immediate family and therefore haven't heard about what's going on.... well, it's nothing fatal or anything close to that. So don't worry but prayers for him are always ALWAYS appreciated of course.
The main thing to post about for now is that pictures are up at http://www.fpchristensens.blogspot.com, of the whole family this time. We had a photographer in our ward take them, so the coolest part is Mike gets to count it as home teaching for this month! LOL.
The boys are just so very cute, they needed more pix and this time Mike didn't want to be left out of them. I, however, would have been just fine with not getting any pictures capturing this postpartum state of exhaustion. But oh well, here they are.
bye
Just been busy lately. That's a good way to sum up. Here's my slogan lately:
"I feel like if I want to have time to get dressed every day, I'd have to sleep in my clothes."
I'll do a bit more postings soon once I can speak more definitively about Grant's health and what will be done. If you aren't immediate family and therefore haven't heard about what's going on.... well, it's nothing fatal or anything close to that. So don't worry but prayers for him are always ALWAYS appreciated of course.
The main thing to post about for now is that pictures are up at http://www.fpchristensens.blogspot.com, of the whole family this time. We had a photographer in our ward take them, so the coolest part is Mike gets to count it as home teaching for this month! LOL.
The boys are just so very cute, they needed more pix and this time Mike didn't want to be left out of them. I, however, would have been just fine with not getting any pictures capturing this postpartum state of exhaustion. But oh well, here they are.
bye
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