Okay so I have not updated this blog in a long time. I apologize dear Millers! In thinking why I have not posted I have come to understand why. It's because I am frustrated. I am so frustrated that he is not home yet. That every time the Millers post things on Facebook saying that things are going well a day or two later something horrible happens again. Why has there seemed to be no improvement? Why hasn't Heavenly Father healed this little guy yet? How long must he and his family suffer? Why can't he be whole yet? Why can't at least things be progressing steadily in some way even if just a little way?! I know Heavenly Father has His own timing and that His will may be different that ours but yet I still find myself just so frustrated. Can you imagine being Jamie and Andrew? Jamie goes to the hospital every single day with little Grace in tow. That is until now. Grace is no longer allowed in the hospital at all due to flu season! Poor Grace and Joseph will no longer be able to see their brother except through pictures! And now Jamie and Andrew will have to figure out what to do with their other 2 children when they want to go see little Seth. I just feel so helpless. I want to help them so badly! I want to somehow ease their pain and suffering! I have no idea how though. Unfortunately we don't have the money to give much in that way. I know money doesn't fix anything really but it can help ease the burden of the gas they have to use every single day to make their long journeys to the hospital. So if any readers have any more to give maybe together we can try to at least lighten that burden together? And of course we will all continue to pray and pray some more for these amazing people who are going through such a struggle right now.
I talked to Jamie this last week. She was raving at how strong and brave little Seth is. How he truly is a little warrior. There are things that he goes through that any of us would cry and cry through and yet he is so strong and still. She talked about how he is her little social butterfly. He really craves people's attention and hates to be alone. I just cry thinking about how he has to be alone at all. If he were able to be home he would never be alone. But in hospitals he cannot have complete attention all day long due to there being other patients around.
As many of you know Seth was transferred to a different hospital this past week as well. Jamie and Andrew just felt that the doctors where he was were just no longer able to offer any help to Seth. He needed a fresh new perspective from new doctors. Which it sounds like he has received. They have hope as new treatments and ideas are coming about with his new care.
Below are Jamie Miller's thoughts for today. When I talked to her this week she was feeling overwhelmed and frustrated for sure. With the eosinophilic gastroenteritis he will not be able to eat what other people eat probably ever in his life. So trick or treating is out...Thanksgiving turkey and pies is out...cookies out. How do you have 1 kid that is this way and allow the other kids to be kids? So once Seth is home the journey will have only begun for this little Warrior and his ever so patient and loving family.
So today they found that Seth pretty much has no immunoglobulin G. Basically he has no immune system. So that's under autoimmune disorder, but so is the eosinophilic gastroenteritis. Don't know if they're related or not.. I don't know. But that's why he can't get rid of this enterobacter--because he doesn't have the stuff to get rid of it. It's amazing he hasn't been sick--that's why they never thought he had an immune problem. They actually gave him the pneumoccocol immunization like, 2 or 3 weeks ago, and that's pretty much one of the worst things you can give them with this disorder. So it's a MIRACLE he did not get pneumonia from it! So yesterday they needed all this blood to do testing. I don't know how many times they stuck him.. at least 3. They finally had to get blood from an artery because all of his veins are shot. Afterwards I just held him and cried. Today I didn't go to the hospital because the kids aren't allowed there anymore. We're at a different hospital (you knew we transferred, right?), and kids can't go anymore since flu season is starting. So they needed to start an IV to put the immunoglobulin G in his system, but every time they'd get it in, his vein would blow. So they tried 3 times, then Andrew told them to hydrate him some more. So they pumped him full of fluids, then on the second time after that they got it in. And I'm so glad I wasn't there, because it breaks my heart watching them do that to him. So, I'm SOOO glad that these doctors are getting to the bottom of things, and they are SO proactive. But this is going on so long. We'll be lucky to get him home before Christmas, at this point. Yesterday he was nauseous for some reason, so he kept dry heaving, but there's nothing in his stomach.. once he was able to actually vomit stomach acid. All the rest of the times he couldn't actually get anything out. The nurse kept pulling a bunch of acid out of his stomach through his feeding tube. He was so miserable, and then I thought they'd leave him alone for a while, but then today they took more blood, and then needed to get that IV in. Ugh, I just hate this.
Sunday, October 17, 2010
Tuesday, August 31, 2010
The wait continues...
Here is the update from the Millers. It's just such a waiting game isn't it? Just not a FUN game of any sort!
The specialist has decided that Seth's problem is due to a volume of milk problem rather than this bacterial problem. So Dr. Brady (the specialist) said they would increase Seth's probiotics and take him completely off of antibiotics. Only problem is she never told the doctor about increasing the probiotics, so Seth doesn't have an order for that.
As for the volume problem, she said that he would eat from a bottle during the day, and get a continuous drip from a feeding tube during the night. She said that if that works, then once he's off of IV fluids he could go home like that--I would just have to learn how to put the feeding tube in, and I'd have to bring home a machine that can do the continuous drip.
Andrew and I don't think it's a volume problem--we think it's a bacterial problem. So now that Seth is off of antibiotics, we are waiting for everything to fall apart again. I suppose we'll know in the next day or two.
Seth is growing well, though. At 11 weeks old, and almost 2 weeks adjusted age, he is 7 pounds, 14 ounces.
The specialist has decided that Seth's problem is due to a volume of milk problem rather than this bacterial problem. So Dr. Brady (the specialist) said they would increase Seth's probiotics and take him completely off of antibiotics. Only problem is she never told the doctor about increasing the probiotics, so Seth doesn't have an order for that.
As for the volume problem, she said that he would eat from a bottle during the day, and get a continuous drip from a feeding tube during the night. She said that if that works, then once he's off of IV fluids he could go home like that--I would just have to learn how to put the feeding tube in, and I'd have to bring home a machine that can do the continuous drip.
Andrew and I don't think it's a volume problem--we think it's a bacterial problem. So now that Seth is off of antibiotics, we are waiting for everything to fall apart again. I suppose we'll know in the next day or two.
Seth is growing well, though. At 11 weeks old, and almost 2 weeks adjusted age, he is 7 pounds, 14 ounces.
Thursday, August 19, 2010
Going home in a week or two MAYBE....HOPEFULLY!
Here is the latest from Jamie. Pray pray pray and pray some more that Seth will be able to come home within the next week or two! The Millers SOOO need to all be together as a complete family each and every day! Keep fighting Seth! Soon you can come home!
Okay, so Seth had another setback. Took him off of antibiotics, and things started falling apart again--diarrhea, blood in his stool.. he didn't want to eat at all. So we cut his feedings again, and called the specialist. So Seth saw an infant gastrointestinal specialist yesterday. She said that his problems are most likely from the overgrowth of bacteria (interobacter) that his antibiotics can't get rid of. So she's put him on a better antibiotic (flagyl), and he'll be on that for 21 days. She also said he needs to be on breastmilk (hooray!!! she doesn't think he's lactose intolerant! My continued pumping has not been in vain!). So he started eating again today at 10 ml (about 2 teaspoons), and they're going to move that up slowly but I don't know how slowly--I haven't been able to talk to the doctor yet. So Dr Brady (the specialist) said that if he does well eating breastmilk, then in 7-10 days, so long as he's off of his TPN (IV fluids), he can go home, and will finish the antibiotics at home. Wow! I'm almost afraid to get my hopes up yet again, but as always, can't help myself! I am gearing up for him to come home next weekend! We painted the kids bedroom downstairs, and now have their bunk bed moved down there! I've been using the steam vac on their carpet down there, and wow--it is DIRTY! So we're getting them all moved so we can start setting up Seth's room! So exciting! Okay, that's today's update!
Okay, so Seth had another setback. Took him off of antibiotics, and things started falling apart again--diarrhea, blood in his stool.. he didn't want to eat at all. So we cut his feedings again, and called the specialist. So Seth saw an infant gastrointestinal specialist yesterday. She said that his problems are most likely from the overgrowth of bacteria (interobacter) that his antibiotics can't get rid of. So she's put him on a better antibiotic (flagyl), and he'll be on that for 21 days. She also said he needs to be on breastmilk (hooray!!! she doesn't think he's lactose intolerant! My continued pumping has not been in vain!). So he started eating again today at 10 ml (about 2 teaspoons), and they're going to move that up slowly but I don't know how slowly--I haven't been able to talk to the doctor yet. So Dr Brady (the specialist) said that if he does well eating breastmilk, then in 7-10 days, so long as he's off of his TPN (IV fluids), he can go home, and will finish the antibiotics at home. Wow! I'm almost afraid to get my hopes up yet again, but as always, can't help myself! I am gearing up for him to come home next weekend! We painted the kids bedroom downstairs, and now have their bunk bed moved down there! I've been using the steam vac on their carpet down there, and wow--it is DIRTY! So we're getting them all moved so we can start setting up Seth's room! So exciting! Okay, that's today's update!
Monday, August 16, 2010
It's not over yet...please keep praying!
Below is the update from Jamie Miller. Sorry for a delay in updates. We went on a family reunion. Our life keeps going on...all the while the Millers continue in the waves of uncertainty with little Seth. I think many of us think that if we are 'forgetting' about Seth and the Millers that must mean that they are all doing great! Unfortunately that is so not true though. They have to keep fighting. Keep hoping. Keep going back to the hospital faithfully everyday knowing that once again they will have to leave their baby there. He does great...hopes are high...then something else goes wrong and hopes are dashed and tears are cried and faith is tried some more. Please keep praying for the Millers. While our lives may keep twirling and whirling just fine theirs is not. They still need our prayers at least. And if we have any more money to give their gas guzzling van could really use the support as they continue to make daily trips to the hospital 45 minutes away that is until Drew and Joseph start school again all too soon!
Well, Seth is doing really well. Almost ready to go home--the only thing stopping us now is he is a bit anemic again, and his stools are a bit loose with an occasional speck of blood in it.
The anemic thing might not be a problem--on Tuesday they're going to check his blood again to see if he has immature red blood cells. If he does, then his body is working on the problem. If he doesn't, he'll probably get another blood transfusion. Either way.. not a HUGE deal. Easy to deal with.
The stool thing is more of a concern, since these were the issues when he had his really bad night (oh, and speaking of his bad night.. I talked to his nurse last night, and he was working the night that Seth got really dehydrated (but he wasn't his nurse that night) and lost 12 ounces. He said it was a pretty big deal--there were 6 people in his room all night. And he said if the doctor calls verses the nurse.. then it's a pretty big deal. Kinda glad I didn't realize how serious things were at the time. They later told us that his potassium was dangerously high.. to the point that he could have started to have heart arrhythmia). They just put him on mylanta for his acid reflux (which he has really bad), and apparently that can cause loose stools.. so they've taken him back off, and now we're waiting to see if that makes a difference. They've stopped increasing his feedings until we can get his stool regulated again--so he's at 35 ml until things start to straighten out, and then we'll start going up by 5 ml/day again. Once we can start increasing his feedings again, he'll need to be somewhere in the 40+ ml range before he can go off of IV fluids.. once we do that, and he's tolerating everything, and growing.. then he can go home! Currently he's on a special formula that you have to order through the pharmacy, called Elecare. His doctor would like to start switching him back to breastmilk soon, in hopes that he'll be able to tolerate it, so that would be good!
When he goes home he'll probably go home on a monitor because he still has bradycardia. Most of his heart rate drops are due to the acid reflux, but I don't think all of them are. He'll also probably go home with some sling thing to keep him elevated in bed because of his acid reflux, but that isn't for sure yet. I'm just assuming it's bad enough that they'll want to do that.
That's the update! Hopefully things will get resolved soon. We're so close!
Well, Seth is doing really well. Almost ready to go home--the only thing stopping us now is he is a bit anemic again, and his stools are a bit loose with an occasional speck of blood in it.
The anemic thing might not be a problem--on Tuesday they're going to check his blood again to see if he has immature red blood cells. If he does, then his body is working on the problem. If he doesn't, he'll probably get another blood transfusion. Either way.. not a HUGE deal. Easy to deal with.
The stool thing is more of a concern, since these were the issues when he had his really bad night (oh, and speaking of his bad night.. I talked to his nurse last night, and he was working the night that Seth got really dehydrated (but he wasn't his nurse that night) and lost 12 ounces. He said it was a pretty big deal--there were 6 people in his room all night. And he said if the doctor calls verses the nurse.. then it's a pretty big deal. Kinda glad I didn't realize how serious things were at the time. They later told us that his potassium was dangerously high.. to the point that he could have started to have heart arrhythmia). They just put him on mylanta for his acid reflux (which he has really bad), and apparently that can cause loose stools.. so they've taken him back off, and now we're waiting to see if that makes a difference. They've stopped increasing his feedings until we can get his stool regulated again--so he's at 35 ml until things start to straighten out, and then we'll start going up by 5 ml/day again. Once we can start increasing his feedings again, he'll need to be somewhere in the 40+ ml range before he can go off of IV fluids.. once we do that, and he's tolerating everything, and growing.. then he can go home! Currently he's on a special formula that you have to order through the pharmacy, called Elecare. His doctor would like to start switching him back to breastmilk soon, in hopes that he'll be able to tolerate it, so that would be good!
When he goes home he'll probably go home on a monitor because he still has bradycardia. Most of his heart rate drops are due to the acid reflux, but I don't think all of them are. He'll also probably go home with some sling thing to keep him elevated in bed because of his acid reflux, but that isn't for sure yet. I'm just assuming it's bad enough that they'll want to do that.
That's the update! Hopefully things will get resolved soon. We're so close!
Tuesday, July 20, 2010
Real food coming his way! Hooray!
Below is the update from Jamie. Can I just say wow! Wow what an experience this has all been and how amazing it is that we live in a day that Seth could be Seth. I mean the doctors can fix crazy problems and keep little ones alive even though their stomachs are clueless until all works properly! What a blessing! We are SO proud of you Seth and cannot wait to meet you! You are an inspirational little warrior that I am sure will continue to inspire so many through out your long wonderful healthy life that is to come soon!
So, about 20 minutes after we got to the hospital today, the nurse walks in and says that Seth's replogle is coming out, and he's going to get his first bottle! I was in the middle of pumping, so I just stopped because I wanted to see her take the replogle out. The first time I watched him yawn after it was out, I saw him start to wince at the end, expecting it to hurt, and then he looked really surprised because it didn't! I was so happy to see that! He always cried after yawning when he had the replogle down his throat.
Things turned out perfectly, because I had just pumped, and so he got to take fresh milk for his first bottle. It was only 5ml, which is hardly anything, but it's a start! He only switched to a normal size pacifier yesterday, prepping him for bottle nipples, and he's been doing well with that. It took him a while to suck on the bottle nipple--he just has no idea what he's supposed to do with a bottle! His stomach doesn't feel hungry, because it's never really had food in it except the first couple days of life. So even though he barely had anything to drink, it probably took 10 minutes for him to get it all down. He just looked so confused! haha! But he got it all down, and afterwards I burped him and got a few burps out--he didn't spit anything up, so that was good!His second feeding was 3 hours later, and the nurse let me feed him. She had me hold him out in front of me, with my hand under his head, and he was lying down on his side so that when he swallowed, it would go down the side of his throat. That's apparently easier for these little guys. He was really sleepy, so it took a while for him to get it down again, but once he started to suck, he was able to keep at it until it was gone.
We're so excited that we're moving forward, and so proud of him! We don't know yet if his stomach is pushing anything down. We know it CAN go down--we just don't know if his stomach will cooperate right away, or if it will take a while. But either way, this is definitely a step in the right direction!!
So, about 20 minutes after we got to the hospital today, the nurse walks in and says that Seth's replogle is coming out, and he's going to get his first bottle! I was in the middle of pumping, so I just stopped because I wanted to see her take the replogle out. The first time I watched him yawn after it was out, I saw him start to wince at the end, expecting it to hurt, and then he looked really surprised because it didn't! I was so happy to see that! He always cried after yawning when he had the replogle down his throat.
Things turned out perfectly, because I had just pumped, and so he got to take fresh milk for his first bottle. It was only 5ml, which is hardly anything, but it's a start! He only switched to a normal size pacifier yesterday, prepping him for bottle nipples, and he's been doing well with that. It took him a while to suck on the bottle nipple--he just has no idea what he's supposed to do with a bottle! His stomach doesn't feel hungry, because it's never really had food in it except the first couple days of life. So even though he barely had anything to drink, it probably took 10 minutes for him to get it all down. He just looked so confused! haha! But he got it all down, and afterwards I burped him and got a few burps out--he didn't spit anything up, so that was good!His second feeding was 3 hours later, and the nurse let me feed him. She had me hold him out in front of me, with my hand under his head, and he was lying down on his side so that when he swallowed, it would go down the side of his throat. That's apparently easier for these little guys. He was really sleepy, so it took a while for him to get it down again, but once he started to suck, he was able to keep at it until it was gone.
We're so excited that we're moving forward, and so proud of him! We don't know yet if his stomach is pushing anything down. We know it CAN go down--we just don't know if his stomach will cooperate right away, or if it will take a while. But either way, this is definitely a step in the right direction!!
Friday, July 16, 2010
Recovery is going well!
This is from Jamie herself. Sounds like Seth is continuing to warrior his way through this miserable beginning of life! Go Seth Go!
So, Seth is now off of his ventilator and is just on oxygen. He's doing really well... he opened his eyes for about 10 minutes today, which was SOOO nice to see! He didn't look uncomfortable or in pain or anything, so that was a relief. He looked right at us every time we said something to him. He is so strong. Not much to update you on, other than that!
So, Seth is now off of his ventilator and is just on oxygen. He's doing really well... he opened his eyes for about 10 minutes today, which was SOOO nice to see! He didn't look uncomfortable or in pain or anything, so that was a relief. He looked right at us every time we said something to him. He is so strong. Not much to update you on, other than that!
Tuesday, July 13, 2010
He MADE it!!!!
Okay. So he had pyloric atresia, which is super rare. less than 1 in a million babies have it! Crazy, huh? So, the surgeon didn't exactly get RID of it, but he basically created an opening for everything to go around it. Can't really explain the procedure--we made him draw it for us. Pretty amazing, though.
Anyways, he's doing well. He's on a ventilator because the anesthesia causes them to not breathe on their own, so he's on that until he can wake up enough to start breathing. They began weaning him off already.. he started waking up about 15 minutes after we left the hospital. Go figure! But they think they'll be able to keep him out of the isolette and just put him in a regular crib, and he'll be able to start wearing clothes and stuff, so that's exciting!
The most horrible part of the day was in the waiting room. We were sitting right next to the consultation rooms where the surgeons talk to the family or whatever. Well while we were sitting there, one family got the news that the patient didn't make it. He was on the way to the recovery room when his heart stopped and they couldn't revive him. It was HORRIBLE. We could hear them start sobbing, and what sounded like hitting the wall. Oh my gosh... it was horrible. And it was kind of a reality check of the scary situation we were in, you know? Anyways, I'm so glad this day is over!
So, they're going to run some tests next week to make sure things are able to move through his stomach. His stomach may take a while to start digesting again, since it hasn't had to do anything for a while.. so it might need to re-learn, so to speak. But once we know things are moving through, he'll be able to start eating. So for now, it's just letting his tummy heal... and early next week we'll know if the surgery worked or not!
What a warrior! Great job Seth! Way to push through this crazy day!
Anyways, he's doing well. He's on a ventilator because the anesthesia causes them to not breathe on their own, so he's on that until he can wake up enough to start breathing. They began weaning him off already.. he started waking up about 15 minutes after we left the hospital. Go figure! But they think they'll be able to keep him out of the isolette and just put him in a regular crib, and he'll be able to start wearing clothes and stuff, so that's exciting!
The most horrible part of the day was in the waiting room. We were sitting right next to the consultation rooms where the surgeons talk to the family or whatever. Well while we were sitting there, one family got the news that the patient didn't make it. He was on the way to the recovery room when his heart stopped and they couldn't revive him. It was HORRIBLE. We could hear them start sobbing, and what sounded like hitting the wall. Oh my gosh... it was horrible. And it was kind of a reality check of the scary situation we were in, you know? Anyways, I'm so glad this day is over!
So, they're going to run some tests next week to make sure things are able to move through his stomach. His stomach may take a while to start digesting again, since it hasn't had to do anything for a while.. so it might need to re-learn, so to speak. But once we know things are moving through, he'll be able to start eating. So for now, it's just letting his tummy heal... and early next week we'll know if the surgery worked or not!
What a warrior! Great job Seth! Way to push through this crazy day!
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