We are home.

We are tired. Bobby is throwing together a small thanksgiving dinner for him and I, as we don’t want to take Ollie out for a big thanksgiving dinner with family. Landon is at Grandma’s for the family thanksgiving, but we will go get him soon and bring him home.

It’s been a long two weeks in the hospital, and we’re a little frightened about Oliver’s health and breathing and everything. It will be a while before life is normal, but I know that we will manage!

Thank you again for everything, you guys really came through!

We are home.

We are tired. Bobby is throwing together a small thanksgiving dinner for him and I, as we don’t want to take Ollie out for a big thanksgiving dinner with family. Landon is at Grandma’s for the family thanksgiving, but we will go get him soon and bring him home.

It’s been a long two weeks in the hospital, and we’re a little frightened about Oliver’s health and breathing and everything. It will be a while before life is normal, but I know that we will manage!

Thank you again for everything, you guys really came through!

Ollie is three weeks old today

Well, we are out of ICU. We’ve been out since yesterday morning, but since there haven’t been any beds on the regular floor, we’re still sitting in ICU. They did move us to another room though!

Oliver is doing great! They took him off O2 yesterday morning. At this point he is behaving normally, and is even breastfeeding again! (although we are still giving him pumped milk in a bottle as well) He is now on oral phenobarbital, and will be for a few months. He is also still on Methadone. He gets his last dose of Methadone at 2AM tonight, and can be discharged as early 12 hours after that, and I expect discharge to take some time, so I think the best case scenario is that we might be home around 6pm tomorrow (thanksgiving). Mind you, if he has the slightest bad reaction, they will keep us for at least 24 hours after the last dose, which puts us out on Friday.

He still has the PIC line in his head, and is keeping it “just in case” and getting a very low dose of IV fluid through it in order to keep the line open, but he no longer “needs” the fluid from the IV. His swelling is now almost all gone as well. He fits back in his size 1 diapers. It was wonderful to change his diaper this morning and discover he was almost back to normal size. Suddenly the size 3 diapers were swallowing him whole!

We’ve been told multiple times how amazed people are by his recovery, and how unlikely said recovery was. I’ve been told multiple times by medical professionals here at the hospital that they didn’t think he was going to make it, or that he would have died if we hadn’t already been in the hospital. We will have to watch him for seizures, and if he has one lasting less than five minutes, to contact the neurologist. If it’s more than 5 minutes, we need to go to the ER. He has a follow on appointment with the neurologist in January, and he has a doctor’s appointment with his regular doctor next Friday. Oliver’s recovery is truly a miracle, and something to be thankful for.

Thank you again for all your positive energy, prayers, and support.

Ollie is three weeks old today

Well, we are out of ICU. We’ve been out since yesterday morning, but since there haven’t been any beds on the regular floor, we’re still sitting in ICU. They did move us to another room though!

Oliver is doing great! They took him off O2 yesterday morning. At this point he is behaving normally, and is even breastfeeding again! (although we are still giving him pumped milk in a bottle as well) He is now on oral phenobarbital, and will be for a few months. He is also still on Methadone. He gets his last dose of Methadone at 2AM tonight, and can be discharged as early 12 hours after that, and I expect discharge to take some time, so I think the best case scenario is that we might be home around 6pm tomorrow (thanksgiving). Mind you, if he has the slightest bad reaction, they will keep us for at least 24 hours after the last dose, which puts us out on Friday.

He still has the PIC line in his head, and is keeping it “just in case” and getting a very low dose of IV fluid through it in order to keep the line open, but he no longer “needs” the fluid from the IV. His swelling is now almost all gone as well. He fits back in his size 1 diapers. It was wonderful to change his diaper this morning and discover he was almost back to normal size. Suddenly the size 3 diapers were swallowing him whole!

We’ve been told multiple times how amazed people are by his recovery, and how unlikely said recovery was. I’ve been told multiple times by medical professionals here at the hospital that they didn’t think he was going to make it, or that he would have died if we hadn’t already been in the hospital. We will have to watch him for seizures, and if he has one lasting less than five minutes, to contact the neurologist. If it’s more than 5 minutes, we need to go to the ER. He has a follow on appointment with the neurologist in January, and he has a doctor’s appointment with his regular doctor next Friday. Oliver’s recovery is truly a miracle, and something to be thankful for.

Thank you again for all your positive energy, prayers, and support.

good day today!

Oliver is now off of the Fentanal and the Versed. He is currently on Methadone, and is not exhibiting any great withdrawal symptoms. He will need to be in the hospital to get the Methadone, and he will be on it till Thursday or Friday, so that is the earliest we will get out of the hospital.

Oliver is basically off of everything actually, at this point. He’s still getting 2 antibiotics until Weds. He’s also getting the lasiks drug to help reduce the swelling he has. He is so swollen as a result of being on the respirator and the drugs he was on. His head and face are finally normal sized again, along with his hands. His belly is still a little swollen. His privates are VERY swollen still. I’m told this will be the last thing to return to normal. Literally, his testicles are hanging around his knees and are larger than golf balls.

He’s also still getting a low dose of O2 through the tube on his nose, nothing serious. So basically he’s got 2 antibiotics, the a fore mentioned methadone, the anti-seizure phenobarbital (which he needs to be on for 3 months)and the lasiks. Compared to where he was just two days ago, it’s pretty amazing. He’s also eating normally. He’s peeing and pooping normally.

He’s doing so well, they want to move us out of ICU. This scares me, as it means the care won’t be as close. Given how fast he crashed, I’m just scared of moving. I’m more scared of taking him home than I was of taking my firstborn child home from the hospital after having him. I mean, Ollie was on deaths very doorstep, no exaggeration. I’ve been told by multiple doctors that if he hadn’t been in the hospital when he went septic that he would have died. I’ve had nurses who were there that Saturday night who have come to me telling me they went home crying because they were so sure he would not still be with the living when they returned for their next shift. They’re trying to tell me they are so happy he is doing so well, but it is so scary to think about. I couldn’t even tell he was having seizures. Aren’t mom’s supposed to know this crap? Anyway, I told the doctor that Oliver might be ready to leave ICU, but I’m not. They haven’t confirmed we are moving yet, but it wouldn’t surprise me if we had “transport” show up to move us at any point. Could be today, might be in 2 days.

All he has left is the PIC line in his head at this point, and since none of the meds he is on are continuous drip, most of the time he’s just got one tube with one med on it. This means he is easy to hold and easy to move around.

Right now my only concern about Ollie is his breathing patterns still seem off to me. He keeps pulling some of his breaths. Also, he sort of shakes his body sometimes when he breathes. I’ve had 2 doctors and 3 nurses look at it, and they all tell me that while it’s not totally “normal” it’s within the realm of normal for a newborn, especially one who has been through what Ollie has been through, and that they will “watch it,” but that his breathing sounds great and his O2 saturation is normal throughout the odd breathing episodes, so nothing to worry about. I hope they are right.

So right now everyone keeps telling me how Ollie was VERY SICK, but now seems MOSTLY over it.
We are very blessed. Thank you so much for all your prayers and positive thoughts. Please keep them coming for a few more days! We seem to be out of the woods, and I am convinced that your positive energy and prayers pulled off a miracle!

good day today!

Oliver is now off of the Fentanal and the Versed. He is currently on Methadone, and is not exhibiting any great withdrawal symptoms. He will need to be in the hospital to get the Methadone, and he will be on it till Thursday or Friday, so that is the earliest we will get out of the hospital.

Oliver is basically off of everything actually, at this point. He’s still getting 2 antibiotics until Weds. He’s also getting the lasiks drug to help reduce the swelling he has. He is so swollen as a result of being on the respirator and the drugs he was on. His head and face are finally normal sized again, along with his hands. His belly is still a little swollen. His privates are VERY swollen still. I’m told this will be the last thing to return to normal. Literally, his testicles are hanging around his knees and are larger than golf balls.

He’s also still getting a low dose of O2 through the tube on his nose, nothing serious. So basically he’s got 2 antibiotics, the a fore mentioned methadone, the anti-seizure phenobarbital (which he needs to be on for 3 months)and the lasiks. Compared to where he was just two days ago, it’s pretty amazing. He’s also eating normally. He’s peeing and pooping normally.

He’s doing so well, they want to move us out of ICU. This scares me, as it means the care won’t be as close. Given how fast he crashed, I’m just scared of moving. I’m more scared of taking him home than I was of taking my firstborn child home from the hospital after having him. I mean, Ollie was on deaths very doorstep, no exaggeration. I’ve been told by multiple doctors that if he hadn’t been in the hospital when he went septic that he would have died. I’ve had nurses who were there that Saturday night who have come to me telling me they went home crying because they were so sure he would not still be with the living when they returned for their next shift. They’re trying to tell me they are so happy he is doing so well, but it is so scary to think about. I couldn’t even tell he was having seizures. Aren’t mom’s supposed to know this crap? Anyway, I told the doctor that Oliver might be ready to leave ICU, but I’m not. They haven’t confirmed we are moving yet, but it wouldn’t surprise me if we had “transport” show up to move us at any point. Could be today, might be in 2 days.

All he has left is the PIC line in his head at this point, and since none of the meds he is on are continuous drip, most of the time he’s just got one tube with one med on it. This means he is easy to hold and easy to move around.

Right now my only concern about Ollie is his breathing patterns still seem off to me. He keeps pulling some of his breaths. Also, he sort of shakes his body sometimes when he breathes. I’ve had 2 doctors and 3 nurses look at it, and they all tell me that while it’s not totally “normal” it’s within the realm of normal for a newborn, especially one who has been through what Ollie has been through, and that they will “watch it,” but that his breathing sounds great and his O2 saturation is normal throughout the odd breathing episodes, so nothing to worry about. I hope they are right.

So right now everyone keeps telling me how Ollie was VERY SICK, but now seems MOSTLY over it.
We are very blessed. Thank you so much for all your prayers and positive thoughts. Please keep them coming for a few more days! We seem to be out of the woods, and I am convinced that your positive energy and prayers pulled off a miracle!

only one update today, most likely

I know, I’m late posting. I’ve been busy holding Oliver for most of the day.

More test results came back today, they were all negative. We are stopping the anti-viral drug at this point because we have ruled out all the viruses that the anti-viral drug can treat as the cause. The infectious disease doctor thinks it was probably a bacterial infection of some sort after all. Anyway, so they don’t know what made Ollie sick. I’m okay with that, as long as it doesn’t happen again.

Now the best news. The neurologist looked at the CT scans and the MRI scans, and his diagnosis is that what he’s seeing on the MRI is just inflammation due to the seizures he had last week. They think the damage will heal on it’s own, and most likely have no lasting effect on Oliver. He will need to be on the phenobarbital for the next three months. This is going to be fun because apparently the meds taste like crap, and so far no one has any good ideas how we are going to administer it to Ollie. A small challenge at this point, but still something to think about it. In three months, he’ll need another MRI to see how the healing is going and to determine if we can wean him off the meds totally.

So we’ll be off the pain meds on thanksgiving, and we should be off pretty much everything else by then too. The nurses all seem really surprised that Ollie is eating on his own. He’s had 10 oz today, and hopefully will eat more later. I’m not sure when that means we will be able to go home. Today’s nurse is just in shock and far along Oliver is in his recovery.

The one thing today has been a weird shaky breathing that he has been doing. The doctors think it maybe withdrawal symptoms despite the methadone, or perhaps just a weird breathing pattern (which is normal an infants, weird breathing patterns), but they are watching it to see what comes of it. They think his breathing sounds okay, and since it stops when you put your hand on him, they tell me it’s not a seizure. More on that as it develops.

only one update today most likely.

I know, I’m late posting. I’ve been busy holding Oliver for most of the day.

More test results came back today, they were all negative. We are stopping the anti-viral drug at this point because we have ruled out all the viruses that the anti-viral drug can treat as the cause. The infectious disease doctor thinks it was probably a bacterial infection of some sort after all. Anyway, so they don’t know what made Ollie sick. I’m okay with that, as long as it doesn’t happen again.

Now the best news. The neurologist looked at the CT scans and the MRI scans, and his diagnosis is that what he’s seeing on the MRI is just inflammation due to the seizures he had last week. They think the damage will heal on it’s own, and most likely have no lasting effect on Oliver. He will need to be on the phenobarbital for the next three months. This is going to be fun because apparently the meds taste like crap, and so far no one has any good ideas how we are going to administer it to Ollie. A small challenge at this point, but still something to think about it. In three months, he’ll need another MRI to see how the healing is going and to determine if we can wean him off the meds totally.

So we’ll be off the pain meds on thanksgiving, and we should be off pretty much everything else by then too. The nurses all seem really surprised that Ollie is eating on his own. He’s had 10 oz today, and hopefully will eat more later. I’m not sure when that means we will be able to go home. Today’s nurse is just in shock and far along Oliver is in his recovery.

The one thing today has been a weird shaky breathing that he has been doing. The doctors think it maybe withdrawal symptoms despite the methadone, or perhaps just a weird breathing pattern (which is normal an infants, weird breathing patterns), but they are watching it to see what comes of it. They think his breathing sounds okay, and since it stops when you put your hand on him, they tell me it’s not a seizure. More on that as it develops.

quick update before I sleep

It’s been a busy last hour here in the ICU.

First of all, the IV in his leg went bad, so they decided to end the Milrinone! And they took the Lasiks off a drip and are going back to giving it in doses as needed. This means that he only has the IV lines in his head (PIC line) and in his neck (central line).

Secondly HE ATE!!! The doctor let us try an ounce of fresh pumped breast milk in a bottle to see how it went down. The nurse and I started giving it to him and Ollie wasn’t sure what to do with it. They warned me that after a week without eating that he might have some trouble remembering how to suck. At first he kept using his tongue wrong. He’d try to suck, and instead he’d spit the bottle out. It was pretty heart breaking for a few minutes. I wasn’t sure whether or not we should keep trying. The reason I kept trying is because he seemed to LIKE the milk, he just didn’t seem sure how to suck the bottle. (He was eating from a bottle just fine before we came down to ICU).

The nurse left me to try on my own when she got called to another room. Suddenly, Ollie just latched on properly and started sucking! I was happy I started crying right then. He ate! And I got to hold him! And the fact that he remembered within five minutes how to suck makes me think that everything in his brain might be okay too.

update from ICU

So we had the cat scan. The doctor looked at it and said that no blood showed in the scan, and that things looked “good” to her. She is just the floor doctor though, so we need to talk to the neurologist tomorrow to see what the Cat scan results mean in conjunction with the MRI results. I don’t know if puss would show on the cat scan or not. Basically worst case at this point sounds like an infection in the brain, which could mean puss pockets that have to be surgically removed. Best case is still that it is just some inflammation from seizures that may all ready be healing on their own.
The good news out of the cat scan is that there is no fresh blood, so currently he is not bleeding in his brain, which is a good sign.

They finally took him off the ventilator. He is breathing just fine on his own when awake, but is not breathing as deep as he needs to when he falls asleep. This is a normal side effect of being on the vent, and so tonight he is on a low level of O2 through a tube hooked up to his nose in order to help him get enough air in the night. We should be able to wean him off the tube tomorrow.

They are starting to turn down the pain and sedation meds. He’s been on them for a week, and they are narcotic based, so he’s probably low level addicted to them. The pain specialist stopped by and prescribed methadone as part of the weaning process. He’s on a five day plan to wean him, so hopefully thanksgiving he will be weaned off of them at some point. This means we will not be home in time for thanksgiving. My ICU nurse today predicted another week, maybe 10 days more in the hospital. Ollie is showing something already that they consider a symptom of withdrawal, it has something to do with his mouth movements. The plan is to give him a dose of methadone now (well, as soon as the nurse gets it from the pharmacy) and then in 12 hours to give him another dose and cut the pain meds in half. Assuming he stands that, then 12 hours later we will repeat, and hopefully he’ll be off the pain meds in 3 days, and then 2 more of the methadone as needed.

They are working to wean the Milrinone next. Hopefully we will be able to start liquids by mouth in at some point tonight. We are going to try and feed him an ounce of breast milk in about an hour, and see how that goes. He’s got to stay on the antibiotics through Weds.

Then there is still the anti-seizure meds to deal with, I haven’t heard the plan of attack on that. That’s really the biggest question at this point. He seems to be doing okay other than that one issue, making steady progress.

Tonight, I finally got to hold him. It had been an entire week (almost half of Ollie’s life) since anyone had been able to hold him. It was pretty awkward, and it took two people to get us situated, but it was totally worth it. He’s still got a lot of tubes. The nurse said once he is off the Milrinone, the catheter can come out, so that will be nice.

Ollie is acting better. He’s having more periods of wakefulness. He now opens both eyes and he does track movement, both eyes together, so that is a good sign to me. They are watching him to see if he acts “normal” but since he was only home with us for a week, normal isn’t well established at this point. Normal for a newborn seems to be a lot of sleeping and eating, so we just need to wait and see. He seemed normal to me while I was holding him, but I’m not the best judge.

11/21/09

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