Sorry about no updates for a while, Dionna and I are trying to make sure the other parts of our lives aren't forgotten.
So I noticed what rachel put up, but I'll just expand on that. As of now though, he is stable, and his kidneys are functioning, a little on the low side, but not to the point that they are concerned. Everything else is pretty normal, liver function, lungs, etc. His belly ruben count is down, so that's good news, and he doesn't have any IV's. He only has a feeding tube down his nose, because he's requried to eat so much every three hours. They want him eating a lot so he will gain weight. The lowest he measure was 6lbs 0.2oz. He currently weighs 6lbs 1oz. He shouldn't start gaining weight untill about today (1 week old). If he doesn't gain quickly that's fine, especially with his kidney problems. They told us that with his problems, weight gain will probably be slow. They also can't fortify the breast milk with callories. The reason is because the fortifing stuff has a lot of sodium in it, which his kidneys can't handle, or so they think. So to not risk further kidney problems, the solution to weight gain is volume. Before he can go home they want his breast milk intake to increase a lot. Also he has to gain so much weight, and his kidney function, which so far is stable, needs to continue to be stable. There is no known release date, and he'll probably be in the NICU for 2 weeks or so more. He could come home earlier though, there's no real way to know.
Also his head has a pronounced ridge that they are watching, right now there not worried, but they are watching it closely. It's just the bones overlapping, which isnormal, what's not normal is the ridge is becomming more pronounced.
Yes, he will have to have open heart surgery, the question is when. For the surgery they have to stop his heart, so he'll be hooked up to a machine that will pump his blood. His kidneys have to be able to handel the procedure. Also after the procedure, there will be increased blood flow, so his kidneys also need to handle that. The heart doctors and the kidney doctors are talking together to find out when would be the best time to do the operation. The problem he has is somewhat common, the thing that makes him unique is the kidney problems. His heart has an extra sack on it, and the four main arteries comming from the lungs are attached to that sack, and not the heart. However there is a small opening into the heart that allows the blood flow, but it's restricted. It's not life threatining, but there is a chance that the opening could close up. They have to go in and make the opening larger. At least they have time to come up with a plan.
Orthopedics came to look at his feet, and said they wouldn't consider doing anyting untill he's about 9 months old. Otherwise they say that if it doesn't bother us or make bigger problems other than shoes, they probably wont do anyting about it. Dionna and I see no point in taking them off, besides, he's my lucky twelve. That's pretty much it for now, when more major news is discovered, I'll post it.
Thanks again for all the love and support
March 8, 2011 7:09pm
Soooo, here's the latest.
He has been eating more, but not enough to take him off the IV. The let down for Dionna is that he hasn't been able to breast feed. He gets latched on, but he gets exhausted very quickly, and after a few drops he gives up. The doctors have been very clear that they want him on breast milk, so we have gone to bottle feeding. Dionna is more worried about him gaining weight than her comfort level, so she's willing to pump and let him bottle feed, which doesn't wear him out as quickly. He realy started into it last night when he was able to drink about 12ml. Last night he fed three times, and today, we've been here for three of the feedings. All of which have been by bottle and done be either Dionna or I. The most he ate was 30ml, which is good, but not enough to take him off the IV's. Dionna is producing enough, and he's only been fed formula once, which is no big deal. He is still loosing weight, but for only being three days old, it's very normal.
Some results. His liver is showing no signs of problems, so they're not worried about his liver, nor are they worried about the fluid in his abdomen. They don't know if it's going away, but the rapid weight loss could be an indication of the excess fluid loss. However his lungs are doing fine, and he's stable, so to even look to see how much fluid is there is not worth it. However, his kidneys are showing signs of being risky. The have measured some number and it's higher than normal, but not high enough to raise serious concerns. They have been weighing his diapers, and he is peeing enough, which indicates that his kidneys are functioning. They did perform a cardiograph on him, but the results aren't back. They can tell us that something about his heart is not normal, but they are waiting for cardiologysts to look at the ultrasound to be sure what's wrong. It's not enough that the doctors are worried, it's just a minor concern right now. They are mostly just checking everyhting, to cover all the basses.
The genetics team has come by, and took some blood. They sent it off to be tested, but the results take 2 to 6 weeks to get back. They're thinking that his extra toes and the kidney problems are related to some genetic disorder, but they can't be sure becuase he's not showing other signs of the typical genetic disorders. Usually there are head or eye problems, but so far there are not problems with those. They have order his eyes to be checked, but because of the availability of thosed doctors, it hasn't been done yet. The entire genetics team was here today looking at him, and they commented that just observing him shows signs of a very normal baby. So his nerological function seems normal.
The biggest joke we keep hearing is that he needs to be on the swim team, like he could be the next olympian swimmer, with those extra toes. Everybody thinks they're the cuttiest thing, especially because of how normal they are. The genetics doctor that has talked with us says that she has never seen extra toes so perfectly formed. Most of the time something is wrong such as the nail, the joints, missing bones, etc. But Jeff's extra toes are very normal, and look like they should be there.
His eyes were open alot today, and I've psoted some pictures of he adorable eyes open. He is becomming more active around feeding times, and looking around more. He was studying me and went very crosseyed once, it was so cute. From what we can tell, his eyes are normal.
The biggest concern right now is his kidney function, but for now they are proving to be working fine. As far as the time line goes, there is no estimate as to when he might come home. They still have alot of test to do, and alot of questions to answer, and untill there answered, and he can prove to remain stable, he can't go home. However, if feeding is the only thing keeping him at the NICU, they will try to get him to a good feeding rate, and if that doesn't happen, they'll teach us how to put a feeding tube down his nose. However, that has to be the only thing holding him back. So it could be this next week, or it could be in several weeks, we don't know.
Dionna is doing fine, with some expected after birth and pumping pain. I'm hanging in there, very tired and stressed. We are being taken care of with food, and Jake and Rachel are still watching Kenny. He's having a good time. Unfortunately, no one under the age of 14 is allowing in the NICU, so kenny wont be able to see him untill he comes home.
I think that's all, but I'm not able to think very straight. Please feel free to ask questions, and I'll answer them the best I can. Thanks again for all your love and support, it helps us to know that we're not the only ones concerned about little Jeff. Keep the prayers comming, he can pull through this, Jeff is a fighter.
With all our love,
Ben and Dionna
So I noticed what rachel put up, but I'll just expand on that. As of now though, he is stable, and his kidneys are functioning, a little on the low side, but not to the point that they are concerned. Everything else is pretty normal, liver function, lungs, etc. His belly ruben count is down, so that's good news, and he doesn't have any IV's. He only has a feeding tube down his nose, because he's requried to eat so much every three hours. They want him eating a lot so he will gain weight. The lowest he measure was 6lbs 0.2oz. He currently weighs 6lbs 1oz. He shouldn't start gaining weight untill about today (1 week old). If he doesn't gain quickly that's fine, especially with his kidney problems. They told us that with his problems, weight gain will probably be slow. They also can't fortify the breast milk with callories. The reason is because the fortifing stuff has a lot of sodium in it, which his kidneys can't handle, or so they think. So to not risk further kidney problems, the solution to weight gain is volume. Before he can go home they want his breast milk intake to increase a lot. Also he has to gain so much weight, and his kidney function, which so far is stable, needs to continue to be stable. There is no known release date, and he'll probably be in the NICU for 2 weeks or so more. He could come home earlier though, there's no real way to know.
Also his head has a pronounced ridge that they are watching, right now there not worried, but they are watching it closely. It's just the bones overlapping, which isnormal, what's not normal is the ridge is becomming more pronounced.
Yes, he will have to have open heart surgery, the question is when. For the surgery they have to stop his heart, so he'll be hooked up to a machine that will pump his blood. His kidneys have to be able to handel the procedure. Also after the procedure, there will be increased blood flow, so his kidneys also need to handle that. The heart doctors and the kidney doctors are talking together to find out when would be the best time to do the operation. The problem he has is somewhat common, the thing that makes him unique is the kidney problems. His heart has an extra sack on it, and the four main arteries comming from the lungs are attached to that sack, and not the heart. However there is a small opening into the heart that allows the blood flow, but it's restricted. It's not life threatining, but there is a chance that the opening could close up. They have to go in and make the opening larger. At least they have time to come up with a plan.
Orthopedics came to look at his feet, and said they wouldn't consider doing anyting untill he's about 9 months old. Otherwise they say that if it doesn't bother us or make bigger problems other than shoes, they probably wont do anyting about it. Dionna and I see no point in taking them off, besides, he's my lucky twelve. That's pretty much it for now, when more major news is discovered, I'll post it.
Thanks again for all the love and support
March 8, 2011 7:09pm
Soooo, here's the latest.
He has been eating more, but not enough to take him off the IV. The let down for Dionna is that he hasn't been able to breast feed. He gets latched on, but he gets exhausted very quickly, and after a few drops he gives up. The doctors have been very clear that they want him on breast milk, so we have gone to bottle feeding. Dionna is more worried about him gaining weight than her comfort level, so she's willing to pump and let him bottle feed, which doesn't wear him out as quickly. He realy started into it last night when he was able to drink about 12ml. Last night he fed three times, and today, we've been here for three of the feedings. All of which have been by bottle and done be either Dionna or I. The most he ate was 30ml, which is good, but not enough to take him off the IV's. Dionna is producing enough, and he's only been fed formula once, which is no big deal. He is still loosing weight, but for only being three days old, it's very normal.
Some results. His liver is showing no signs of problems, so they're not worried about his liver, nor are they worried about the fluid in his abdomen. They don't know if it's going away, but the rapid weight loss could be an indication of the excess fluid loss. However his lungs are doing fine, and he's stable, so to even look to see how much fluid is there is not worth it. However, his kidneys are showing signs of being risky. The have measured some number and it's higher than normal, but not high enough to raise serious concerns. They have been weighing his diapers, and he is peeing enough, which indicates that his kidneys are functioning. They did perform a cardiograph on him, but the results aren't back. They can tell us that something about his heart is not normal, but they are waiting for cardiologysts to look at the ultrasound to be sure what's wrong. It's not enough that the doctors are worried, it's just a minor concern right now. They are mostly just checking everyhting, to cover all the basses.
The genetics team has come by, and took some blood. They sent it off to be tested, but the results take 2 to 6 weeks to get back. They're thinking that his extra toes and the kidney problems are related to some genetic disorder, but they can't be sure becuase he's not showing other signs of the typical genetic disorders. Usually there are head or eye problems, but so far there are not problems with those. They have order his eyes to be checked, but because of the availability of thosed doctors, it hasn't been done yet. The entire genetics team was here today looking at him, and they commented that just observing him shows signs of a very normal baby. So his nerological function seems normal.
The biggest joke we keep hearing is that he needs to be on the swim team, like he could be the next olympian swimmer, with those extra toes. Everybody thinks they're the cuttiest thing, especially because of how normal they are. The genetics doctor that has talked with us says that she has never seen extra toes so perfectly formed. Most of the time something is wrong such as the nail, the joints, missing bones, etc. But Jeff's extra toes are very normal, and look like they should be there.
His eyes were open alot today, and I've psoted some pictures of he adorable eyes open. He is becomming more active around feeding times, and looking around more. He was studying me and went very crosseyed once, it was so cute. From what we can tell, his eyes are normal.
The biggest concern right now is his kidney function, but for now they are proving to be working fine. As far as the time line goes, there is no estimate as to when he might come home. They still have alot of test to do, and alot of questions to answer, and untill there answered, and he can prove to remain stable, he can't go home. However, if feeding is the only thing keeping him at the NICU, they will try to get him to a good feeding rate, and if that doesn't happen, they'll teach us how to put a feeding tube down his nose. However, that has to be the only thing holding him back. So it could be this next week, or it could be in several weeks, we don't know.
Dionna is doing fine, with some expected after birth and pumping pain. I'm hanging in there, very tired and stressed. We are being taken care of with food, and Jake and Rachel are still watching Kenny. He's having a good time. Unfortunately, no one under the age of 14 is allowing in the NICU, so kenny wont be able to see him untill he comes home.
I think that's all, but I'm not able to think very straight. Please feel free to ask questions, and I'll answer them the best I can. Thanks again for all your love and support, it helps us to know that we're not the only ones concerned about little Jeff. Keep the prayers comming, he can pull through this, Jeff is a fighter.
With all our love,
Ben and Dionna
Not too much more this morning. He has lost some weight, but he has been peeing. Dionna was able to get him to suckle this morning, but not a lot. Latter I was able to hold him and feed him with a bottle, he drank pretty much all of it. They're still worried about his kidney function, and jandis is starting to become a worry also. His weight loss is probably due to no food, only IV fluid. So hopefully he'll keep eating and start gaining weight.
Dionna is going home today, and doing better. There are a few more pictures. Thanks again for all of your support, love and prayers.
Well, some good news, some bad news, and some shots taken. I'm not sure where to start so I'll just start.
The Good - Earlier today we recieved a phone call that little Jeff (yea, his first name is going to be Jeffrey) was fussy and hungry. So Dionna and I went to see him. We started the breast feeding process, but all he did was latch on, not much sucking. Of course that is good news, he's only a day old, but he can latch. Will work on the whole eating thing later. The cutiest thing about all of it was that for about 2 min Dionna and the baby just stared at each other, well as good as a 1 day old can. After he was satisfied, he tried so more, but still no sucking.
The Ugly - Jeff an mommy cuddled for a while, then he was passed on to me. After a few minuets there was some gas passed, and most likely some other stuff. We waited a bit then the nurses came to help up change him, (its a bit tricky with the extra wires). As we were wipping off the black stuff (more good news, the black stuff comming out anyway), he took aim at mommies hand . . . . .and . . . .fire!! I quickly put the diaper back, but more good news, he's soaking his parents with pee!That's a double wammy, get the parents and prove that things are moving, what a kid. So we changed his clothes (another difficult task made so easy by the nurses), and got him back all wrapped up, and back to sleep he went. Soon thereafter, the nurses from another place in the NICU were ready with a big boy crib. Sorry, he's not out of the NICU yet, we thought he was going to be, but he still needs to be observed closely.
The Bad - While I was holding him is when a nurse came to talk to us, and we asked some questions. He has been diagnosed with polysistic kidney disease (not sure if I spelled that right). That could explain his enlarged liver, but it's not for sure that's what's causing it. The fluid build up in his abdomen could also be due to the kidney problems. However, genetisys are going to be running test to see if genetics can help explain all this. There is a possibility that it was passed on from either Dionna or I. She says that it's a 1 in 4 chance of the babies of those with family members that have it will develop it. We don't know right now if anyone in either of our families have it. The worst part about this is that it means his kidney are not developed right, nor will they work right for very long. The question right now is how bad is it, and how long will his kidneys last. To be able to survive a transplant, he will need to be 2 to 3 years old, and he will have to get an adult kidney. Untill then, we have to make sure his kidneys work (which right now the large amount of pee says they're working), and if they don't he has to be strong enough for dialysis. However, the nurse we talked with isn't sure on everything, but we will be meeting with a bunch of people once all the testing is done.
More Good - we went and spent some time with him in the new room, and tried to feed him again. But not much luck, he barely latched on. The nurses aren't worried though, he seems to be doing just fine for how young he is. I suppose soaking his parents the first time wasn't enough, becuase we were there agian to chang him, and the cold air set him off. This time we weren't as prepared, and it just kept comming. We'd pull the diaper away, and another stream would start up. Dionna will be able to go home tomorrow morning or afternoon. Jeff on the other hand is another story. As of right now, he needs to prove that he can feed agressively before he can be released. Of course test results could change that. But he is doing everything else on his own.
Dionna is doing well except for spurts of pain and discomfort, but pain meds seem to be doing the trick. I am hanging in there.
We would like to thank all of you for your love and support, it has meant so much to us. I know that your prayers helped him develop those little lungs, and make those extra toes very normal and cute, and has made him much stronger than anyone expected. If we could ask one thing from all of you, please pray for our little Jeffrey's kidneys. Your faith and prayers have helped so much, and I know that if we can get the same prayers and support that he will make it through this. This little guy has us wrapped around his fingers, and he's doing so well, but there is still no guarentee that he will make it. Again thanks for all your love, prayers and support, it has helped. And keep checking the picture page, I'll be posting them as they come.
With all our love and gratitiude, more than can be expressed through words,
Ben and Dionna
I was finally able to add photos from my camera, so better pictures are not posted. The ones with gloves around him was soon after he was born, a nurse was nice enough to take pictures for us. The ones after are the first time we saw him and earlier today.
Update - he is still doing good, and the doctors have given the go ahead to breast feed him, however he is not ready. Dionna's tried once, but he want's nothing to do with it at the moment. They have x-rayed his foot and said that his extra toes are normal, like they are meant to be there, no bone abnormalities or anything, just extra normal pinky toes. Also the brain ultrasound shows a healthy normal brain. However they still don't know why his organs are enlarged or why there is extra fluid. They are still testing, asking question, and working to figure out why. He will probably be moved out of the NICU later today, mostly because the NICU isn't doing much for him, he's just living on his own. They are feeding him through the IV right now, but nothing beats mommies milk, or so I hear.
Dionna is doing well, not too much pain, had some bouts with it this morning, but it has seemed to settle. It looks like she'll be discharged tomorrow. The babies time line has not been discussed, so I assume its the waiting game.
We would again like the thanks all of you for your love and support, it has meant so much to us, and I'm sure that little Jeff (just a note were debating on the order of the name, either Michael Jeffrey or Jeffrey Michael, any suggestions?) would not be doing as well without your prayers. No one expected him to be doing this well, but so far he's a fighter, and suprising doctors. However I do need to note that mommies kidneys could still be helping him out. They're going to do a test today to determine how well his kidneys might be doing. It takes a couple of days for mommies kidney function to not be reflected in the baby.
Lots of love an thanks
Ben and Dionna
March 2, 2011 1:47pm
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