12/29/10

From Hospital to work to Hospital and back home.

The surgery went really well. His Surgeon said she feels confident about everything. She will follow up in a week with another exam before we know for sure that it was a success.

Omi didn't care for it too much. He's been pretty cranky today, which is understandable. But, he's been resting comfortably. He gets drops in his eyes every three hours, and his eyes are a bit puffy. Not much else to tell right now.

He's going to get a real crib tomorrow though. Wooooo!

Long day. Going to bed....

12/26-28/10

Well, looks like Omi is going to have eye surgery tomorrow.
A specialist cam and looked at him and said that his ROP is getting worse. 
(if you want to know what ROP is in more detail, and let's face it, who doesn't wonder that on a weekly basis, check out http://en.wikipedia.org/wiki/Retinopathy_of_prematurity)
If left untreated, he has a 50% chance of his retinas detaching and him going blind. He has less than 7% chance with the surgery. So, Omi goes under the laser in the morning.

He will have some loss of peripheral vision, but he won't know he's missing anything and adjust.

Omi was on the ventilator and had really high oxygen settings for a long time, so his eyes are paying the price. As I said before, we pretty much knew this was coming for a while.

The surgery itself is pretty simple, takes about a half hour, and isn't too invasive.
They give him a mild sedative to keep him from moving around, then laser down the ridges that are building up on his eyes and preventing the blood vessels from expanding. He will feel a dull ache while the laser is active, and it goes away as soon as it stops.
He'll spend a couple days in dim light to give his eyes time to recover. After that, he should be just fine. They will follow up in a week to see how well it worked.

I'll post again as soon as I can tomorrow after surgery. 
Wish Omi luck!

12/22-25/10

Merry Christmas!

Omi is doing great. He says to tell everyone to have a good holiday. It sounds more like squeaks when he says it, but we know what he means.

He's moving right along. His Nurse Practitioner called me today and said for the first time ever, she has no new orders for him. He doesn't have to work on Christmas.

He has been able to be on nasal cannula for a couple hours a day, which is great. They give him the small plastic tubes for his nose and he takes all his own breaths. It makes it much easier to hold him that way too. We can just walk over and pick him up when he's on it. Pretty cool.
Sometimes he falls asleep hard and forgets to breathe. You have to give him a little pat on his back to get him started again. It sounds weird, but it's actually kind of cute. "Aww look, he's so sleepy he quit breathing. Isn't that cute?"
(Sorry Omi, you just can't scare us anymore)

He is scheduled for eye surgery next week though. Not a huge deal. His ROP has gotten a little worse, so they want to correct it before it gets worse. We're not surprised at all given how long he was on the vent. They do it right at his bed using lasers and don't even have to put him out for it. He will just have to spend a couple days in his bed with really low light.

Afterward though, he will get a big boy crib. No more "kid in the plexiglass box". From there on, barring any unknown things that could jump up, it will pretty much be him learning how to eat on his own, growing and getting ready to come home. The next phase should be nice and boring. We like boring. Boring is good.

Anyway, we hope everyone has a great holiday, and we thank you all again for your kind words and support. It means a lot to us knowing Omi has such a big cheering section.

Santa stopped by the other day to visit the kids at the NICU. Omi told him he wants a hat that fits. We can do that.

12/21/10

Okay, so Omi decided a little after 4 this morning that he no longer needs his breathing tube. Yes, he pulled it out again.
This time though, he's been so close to the criteria to go to c-pap (tubes up the nose with a steady flow of oxygen), that they decided to try him on it and see how he would do. He's been on it and doing fine all day.

I guess it took a bit of work by the staff to get him ready to change over, but they did a fine job and it worked.

All the Doctors and Nurses keep coming by to congratulate us on his big day.

It looks a little goofy, but we'll take the progress. He can now use a binky and cry, even though he sounds like a little duck when he does.

He does not really like the device (we don't blame him) but he got to have it off for a while tonight and they use a mask periodically to keep his breathing going. He had a bath and then got his picture taken with Santa.

So we finally got to see what he looks like with nothing on his face tonight. Pretty cool.

Anyway, here's a few pics and I'll post the one the photographer took of him with Santa when I get it back tomorrow.

12/12-12/20/10

Things just keep getting better.

Omi has continued his upswing. He had been having problems with his liver, but it's been working out with the help of the meds he's on. 
His feedings have continued to go well. He's almost 5 lbs now. Getting big.

He does have an issue with his eyes that is going to be rechecked this week. He has what they call ROP. Broken down, there are ridges in each eye that are preventing his vessels from growing all the way out to the edges of his eyes. They expect this from babies that have been on oxygen as long as he has been. Not a huge deal, but he might have to have laser surgery if the problem does not go away on it's own. The risk of the surgery would be loss of some peripheral vision and/or nearsightedness. Better than blind in my book though. We'll just have to wait and see what his next test says.

His respiratory issues continue to get better every day. His oxygen needs and rate of breathing have both dropped considerably over the last week or so. The plan is for him to finally have his tube taken out this week. Huge step for him. When that happens, he will have to go on what they call c-pap, which is basically tubes up his nose. I'm sure he won't like it much, but it beats a tube in his throat. And as an added bonus; he will get to suck on his fingers without a bunch of obstructions.

Things are pretty uninteresting right now. Mostly a bunch of lab work and watching his growth rate. After the tube comes out, we will pretty much be waiting around for him to get big and strong enough to leave. I think we're entering the home stretch. 

 

12/02-12/11/10

:)

Omi has been doing really good the past week or so. 
A lot of lab work, and more chemistry lessons, but the long and short is that he's been making noticeable progress.

His feedings have been going really well. He's been tolerating them and pooping like crazy. Just ask his nurses. He pooped on one the other day, then basically ruined his incubator with what can only be described as "an epic blowout".
They keep increasing the amount he's eating, and he's been doing great with it. He had a blood sugar issue for a little bit, so they altered his feeding schedule to where he is fed non stop to even it out. It's been working. He's just over 4lbs now.
They had been feeding him and giving him supplements through what they call a PIC line since he was born. It's a line that has been in his arm and runs all the way to his chest. They can basically leave it in as long as they want and it has saved him from being stuck literally a couple hundred times. They have gone so far down on what he needs through this line that they are planning on taking it out within the next couple days. This is going to be a huge step for him.

He's still on the ventilator, but his need for it has slowly been decreasing. It gets really complicated exactly how they ventilate him, but he's in a mode right now that they use for weening him off of it, and he has been responding positively. 
One of his Doctors looked at an x-ray the other day and was very surprised to see that he has no heavy damage to his lungs from the vent, and that he sees no sign of permanent damage. Basically, Omi will grow out of it and his lungs should be completely normal.
So if things keep trending in this direction, we should get to see what he looks like without a tube down his throat and a plastic stick taped to his face soon. I'm sure he will like that.
He obviously thinks he should be off the vent, cause he managed to pull out his tube out the other day. Want to see ten serious people show up quickly in the NICU? Have a kid pull his tube.
According to eyewitness accounts, as soon as it came out, he began to sing Let's Get It On by Marvin Gaye.
Seriously though, we're pretty interested to see what he sounds like. I guess it will take him about a week to get his vocal cords going once the vent is gone.

His skin stopped peeling and looks good. He has a few liver issues that make him look bronze, so when he was peeling the joke was us asking the nurses who took him to the beach while we were at work. Nobody fessed, but I did find some sand between his toes. I'll just assume they had fun.

So, things are going great for the little guy right now. Given where we came from at the beginning, we really couldn't ask for more. 
He was really sick for a long time, but his Doc told us last night that there is no reason to think that we won't be able to take him home. Granted, we don't know exactly when that will be, but it's nice to hear. 
His Nurse Practitioner told me today that he's the toughest kid in the NICU. Also nice to hear.

He's had a really hard road, but managed to overcome everything that's been thrown at him so far. He was the smallest and sickest baby there for a long time, which is not exactly the title anybody wants. 
We've seen a lot of families come and go since we've been there. You hear about babies that are already off the vent two days after they're born, go right to feeding and start making plans to go home. It puts it all in perspective to watch it every day and not only realize how sick he really was, but how far he's come as well. 

I don't want to discredit the struggles of the other babies in the unit, but we can tell that Omi has become a favorite. He's been there a while and been through a lot. People have come to know him and us pretty well. There are a lot of the staff that we consider friends now. A super nice bunch of dedicated, smart and caring people that love what they do. We can't say enough nice things about them. 
The nurses are pretty attached to him and argue over who gets him when they assign duties for the shifts. Aside of all the friends and family rooting him on, (you guys have all been great by the way, thank you) He has a huge cheering section of Doctors, Nurses, Specialists and even the people we see at the Hospital every day that don't work in the NICU.
Everybody loves them some Omi, and do all they can to help him.

Anyway, the good news keeps coming and far outweighs the bad. I think barring any unforeseeable things that might jump up, the worst part is probably behind him.

Go Omi.

   

11/27-12/01/10

Up and down, up and down.

They had to stop his feedings a couple days ago when his blood pressure dropped and he was put on dopamine and some medication. That evened out, so they started feeding him again two days ago. So far so good on the feedings.

They consider him a nutritional emergency at this point since he hasn't been able to eat on a consistent basis. It's turned into priority number one now.

So, they put him on hydrocortisone so that they can treat him for a couple issues, and he can eat while he's on it. The immediate side effect; roid rage. So he's been really irritable lately. Yep, Omi is pissed and strong.

He was getting all his nutritional needs covered by an I.V. and has been gaining weight with it. (he's up to 3lbs, 12oz.!) The problem is, when he has had that much of his feeding through an I.V., it begins to create problems with his liver. Feeding him should fix it, so that's what they are doing.


His skin started peeling the other day. Everyone seems to think that it's from how swollen he was after surgery, but they have been running a barrage of tests just to make sure it's not an infection or anything else. So far, all his tests are negative. He looks like he spent too much time in the sun.

They're running a huge amount of tests on him right now. Most of them are complicated and not a lot of fun to try and verbalize, so I'm just going to say that they're doing a bunch of science-y stuff to keep a close watch on him. They're essentially testing him for a bunch of things to rule out problems, and get a jump on anything they would want to treat him for before symptoms show up. Heading things off at the pass.


He is also getting his first vision test today, which I'm sure will piss him off to no end.

I know the posts have become less frequent lately. It's tiring for us to keep up with everything. There doesn't seem to be enough time in the day to do everything. We wake up, go to work, go to the hospital, go to bed. Every few days, we do some laundry. Most of the time we're waiting on a test or everyone is watching him, seeing what he's going to do next and what he does determines his treatments. Things move slowly for the most part. I'm not complaining though. We're seeing results. It's all worthwhile.

11/23-26/10

Omi is a little sick right now. It started yesterday when his nurse noticed that he wasn't quite himself. He seemed tired and wasn't moving around much or fighting with her when she draws his labs like he normally does.
So the long and short is that they put him on antibiotics (which he will finish with tonight) and are watching him closely to see if he gets any worse.

So far it looks like he might have a little bug or something.
The doctor is growing out a culture from his blood that will determine if he has any type of infection. It takes 48 hours to get the full effect, but so far nothing has popped up which is good.
That, and his blood pressure is down a bit from where they like it to be, so they are giving him dopamine which stimulates his adrenal gland and makes his blood pressure rise.

I just went to see him and he looks really good.

The whole thing is probably not a big deal, but everyone is being cautious to make sure it doesn't turn into a big deal.

Anyway, before that, the last couple days have been really good. Not a whole lot to tell. I was having trouble posting pictures the other day when Heather got to hold him for the fist time, soooooo........

11/21-22/10

Omi has continued making significant improvements the past couple days. He's pretty much just chillin' right now. He's doing well with his feedings and his respiratory issues are getting better. He's not nearly swollen as he had been the past few days.

So, on the 37th day, I finally got to hold him for the first time. 
Needless to say, we're pretty happy. This is the first time he's been out of his little bed since he was born.
It's cool cause we have been patiently waiting this whole time, and now he's finally well enough that we can get him out of bed.

 

Yep, pretty happy right now. 

11/17-20/10

Recovery.

Omi is doing okay after his surgery. 
He had an episode the day after where his blood pressure dropped down really low. He just wasn't responding much after getting pain meds. They had to give him hydrocortisone to get his blood pressure back up, and dopamine cause he wasn't mounting an adrenal response. 
That part is fine now, but made for a pretty scary night.

He got really swollen. Like, no neck swollen. He was eventually given lasix and has been peeing like crazy, but it's good cause the swelling has gone down quite a bit.
He was switched to a conventional ventilator. Big step for him. His oxygen needs were going down pretty rapidly after the surgery, so they switched him over. 
We were between 70-100% before surgery, and now he's been rocking the low 30's. He should be on a c-pap (tubes in your nose) soon. He also got a new breathing tube since he was outgrowing the last one and it was starting to leak. It also helped with his respiratory issues.
He started feedings again. Again, a big step. He hadn't eaten anything since last Saturday.
His blood work had also dramatically improved over the last couple days.

So, Omi has been pretty busy getting better the last couple days. Surgery was obviously helpful. It's just strange to think that this little stupid tube that's open 1mm could have been the difference between him making it and not. Everything has improved since it was clamped. 

For the moment, it's pretty smooth sailing. 
The plan; Eat, get bigger, go home.

Here's a few pictures.....

 Yeah, you might have that one for a while kid.

 Before surgery with a cute little hat.

 

After surgery

 

 

A little puffy.

 

 

Omi's room. 

 

Awww.

 

11/16/10

The surgery was a success.

Long story short; Omi did really well.
His nurse said when they clamped his valve shut, his respiratory rate increased within seconds.

He's resting comfortably right now and being tended to by the best. 
He will probably feel a bit lousy for the next couple of days but all in all it looks like he's going to do okay.

Go Omi. 


 

11/11-15/10

Wow, it's been about five days since the last post. Time flies.

So Omi has had a couple good days, and a couple bad days.
The day after surgery was canceled, he was pretty much on cruise control for the next two days. Just minor tweaks here and there with his fluids. He's essentially been a chemistry set. 
PDA valve open again? Give him another round of indomethacin. 
Blood is a bit acidic? Give him some acetate. 
CO2 is high? Adjust his vent settings. 
Ph level is off? Adjust I.V. fluids. 
Retaining water? Give him some lasix.
During this time his lungs had been pretty cloudy, but getting a bit better.

Saturday he decided again to scare the shit out of us. He does this thing where he bears down on his breathing tube and "de-sats" (de-saturation of oxygen). When this happens, you can usually tell it's going to happen by the way he acts. He gets all cranky and tense for a minute. He de-sats, his oxygen needs go up, then he relaxes, and it goes back down. Usually happens over the course of one or two minutes.
On Saturday, he would de-sat, and instead of his level going down to 50 or 60, he was going down into the 20's. Normal is 80-90. So not only was he going down really low, it was taking him much longer to recover. About five to six minutes. 
At one point, his respiratory therapist had his oxygen pegged at 100% and his nurse was standing by with a manual breathing bag cause it looked like he was going to completely tank. No fun.

He also had blood in his diaper, so they immediately cut off feeding him (again), started antibiotics, x-rays and running tests to see if his bowel was perforated. It ended up being a swollen intestine, which is still going down as we speak.

His x-rays, listening to his heart and echo test confirmed that his PDA valve is open again. Great.
The consensus was to just go ahead and do the surgery so we can stop messing around with it and move on. It's contributing to his lung problems, and we have to keep stopping his feedings to deal with it. 
So, it's getting closed up tomorrow morning. I signed off on the arterial line again, and they are going to start him on pain killers tonight.
Obviously, we're a bit worried about it. There are the standard risks like any surgery, mostly concerns about infection.
The thing that we're most worried about though is the couple days afterward, especially the first 24 hours. 
I guess most babies that have the surgery have vitals that go on a bit of a roller coaster for a couple days. Babies that small just don't deal with surgery too well. They will be watching him like hawks for a few days.
The whole staff at the NICU loves Omi, (the nurses argue over who gets to have him when they assign patients) and we have complete confidence in the care that he's getting.


So cross your fingers, pray to your God of choice, and wish Omi luck tomorrow.

11/10/10

Omi decided this morning: Surgery? Mmmmm, no thanks. Go ahead and cancel that.

I guess he figured out something was going on and chose to get better today. His vent and oxygen settings improved, the blood gasses looked better, x-rays showed his lungs began to clear up, his PDA valve is closing again and he seems to be okay.

One of his main doctors came in and said you could have knocked her over with a feather when she saw how drastically he had changed from yesterday.

I had even signed off on a new arterial catheter for him today thinking it would be needed to make the surgery easier. We're glad he started getting better before they put that in.

It's just strange how these little guys bounce back and forth so quickly. 

Surgery is not entirely off the table until the valve closes completely, and he still has two more rounds of medication to go, but at least things are moving in the right direction again.

We just need to get him off the meds and eating again now.

He seemed to be in a much better mood tonight, and felt well enough to kick my hand for a while. Good times.

In general, the kid has been keeping us up at night, but not tonight.

 

11/07-09/10

On Sunday Omi was doing pretty good. Seemed normal and they had increased his feedings.
Monday, Omi's oxygen settings on his vent were getting pretty high. His x-rays weren't great, and showed a little too much fluid in and around his lungs. Other than that, things again looked pretty normal. Aside from some crankiness.

Today, Omi decided to pull the cap on some drama.
This morning, he went all the way up to 100% oxygen on his vent. He was unstable enough on the vent for them to switch him back to the super vent. (high frequency oscillator) He leveled off, but his oxygen settings have been really high. The lowest today was about 68%. We would like for it to be about 30-40%.

His blood gas tests weren't very good, his lung x-ray showed lots of haze, he got a transfusion, platelets added to his blood and lasicx (water-pill) were injected for the fluid building up in his lungs. 
His x-ray also showed that the PDA valve behind his heart was opening back up instead of closing. So, they gave him another round of indomethacin to try and close the valve. 
Though we won't know for sure until tomorrow, it doesn't seem to be working.
Busy day for Omi.

If the PDA valve closes from the medication, great. But, they went ahead and scheduled him for surgery on Thursday, as it seems likely that it's not going to close.
If they operate, they will make a small incision along his side, spread his ribs, partially deflate and move his lung and clamp the valve shut.
It is believed that part of the reason he's having such a hard time breathing is that there is fluid back-flowing into his lungs as a result of this valve still being open.
 
I guess the tough part is the next 48 hours. There are some babies that cruise right along like nothing happened, but they have told us that most have a pretty rough go for the next couple days. Big spikes in blood pressure, breathing abnormalities, heart fluctuations and, would you believe; they get a little cranky.

As you can imagine, we're a little nervous. We would like to think that tomorrow everything will be okay, but realistically, it looks like Omi is going to get his first badass scar on Thursday.

Even though he was a little irritable when we saw him tonight, his nurse did manage to catch him being cute......

 

 Yes, he's totally sucking his thumb even with his breathing tube in.

 

 

11/05-06/10

So, the last couple days were interesting.

Omi has been doing good for the most part. His respiratory issues are still there, but they have changed the way they deliver air to him though the ventilator, and he has improved a bit. His oxygen was in the 60-70% range, now he's down around 40-50%. This makes us happy.

He has been doing well with feedings and they have increased his amount to 3cc. This is a really big deal for him. Baby eats, gets big and strong, goes home.

He has his blood gas tested all the time, and a few of them were bad; lots of CO2, bad ph level. The changes on his vent kind of evened this out, and he's returning to normal in that area. So overall, things are going well right now.

I got off work and went to spend some time with him on Friday night. Heather was already there.

My time amounted to about 20 minutes.

Heather's left foot had been swelling up for about a day. We started to get concerned because Preeclampsia and HELLP Syndrome can come back within the first eight weeks, and this is one of the early symptoms. Either that, or a blood clot. Great.

Heather called the Doctor that had her as a patient during her stay, and asked if she should see someone. Her Doctor said yes, to go to the ER, and she would call ahead to let them know she was coming.

Heather checks in, and we wait.

She gets an I.V., and swears the nurse tried to write her name in her arm with the needle. They draw labs on her, and send them off to be tested. While that's going on, they take her to get a sonogram on her leg to see if there is a clot. Nope, no clot. So far, so good.

They tell us that her lab work didn't come out, so they have to do it again. Something about the force of the blood coming out damaging the cells (hemolyzed) and not being able to do the type of test correctly. But, her platelets and urine protein look normal, so it looks like we're making progress on ruling things out.

They draw more blood. Same result. They decide to just draw the blood from her other arm without the I.V.

They drew this test in the wrong tube which has a chemical that would make the test invalid. Okay, one more time. My wife = Pincushion.

They decide to do a CAT Scan. Nothing shows up on it. Her blood test results are normal, other than having really high cholesterol, so we have to follow up on that. So the conclusion is that the swelling is a red herring, and nothing to be worried about. Better safe than sorry.

By the time we leave the ER, it's after 4am. So much for Omi time. I have to get up for work in a couple hours, so we stop back by the NICU to say bye to Omi real quick.

We're both tired, cranky and hungry. QT, home, bed. And what did we learn from all this? That my wife apparently shouldn't eat cheeseburgers anymore.

11/03-04/10

Things appear to be going okay. They started his feedings and he is doing fine with it so far. 

It's odd the way they do it. They feed him a little bit, a while later, suck it out of his stomach in a tube to see if he's digesting it okay. Then, they put it back in and let him finish. It makes sense, he's worked really hard to digest it, let him finish instead of starting all over again. But it seems a little gross.

He had another transfusion yesterday. What can we say; the kid loves new blood.

His breathing is still an issue. He has been on two different types of ventilation, and he was doing okay with it for a while, but his lungs have started to develop problems.
When they ventilate him, his lungs expand to a certain pressure, then he gets a certain number of breaths per minute. Not all of his air sacks in the lungs have been fully open the whole time.
The problem is that they don't want to over-ventilate him and cause further damage. So they have backed down the pressure and increased the oxygen saturation level. Where he was as low at times as 30-40%, he's now at 60-70%.
Too much oxygen can also cause damage. Vision issues and brain damage are the two most common issues if he stays that high for too long.
There was also some water around his lungs that was preventing proper oxygenation from happening. They gave him a diuretic (water pill), and the water seems to be going away.


In the next couple of days, if it doesn't get better, we have to talk about putting him on steroids to get his lungs to develop at a quicker pace. 
Nobody wants to do this unless they have to. There are risks for developmental problems if he's put on steroids. I guess there is a certain kind of steroid that is relatively new, and has minimal side-effects they are thinking of using. I think we have some reading ahead of us.

While I was spending time with Omi yesterday, the Nurse Manager came in to talk to me. She told me they had just won a quality excellence award, and asked if it was okay for them to film a short clip of one his doctors with him. It will just take a minute. They are going to show it at a ceremony for fund raisers and political people, explaining what they do. Sure, why not.
The camera guy said he will send me a link to the clip when it's finished, and I'll post it here. 

 

If this post were paper, I would have murdered a tree.

You know, nothing really happened today. We'll take it.

Slight adjustments on vent settings, a couple tweaks on fluid and glucose levels. No drama.

Oh, don't get me wrong, he pretty much looked cute as can be all day long, but nothing out of the ordinary.

Omi is going to start back on feedings tomorrow. This is pretty critical. A lot hinges on how he handles it. They're going to start slow; 1cc every six hours, and see how he does.

Wish him luck, the issue of feedings has been the thorn in our side for days now. Right now, it's pretty much the key to him getting better.

I think the rest of this week is going to be pretty busy with Omi. We'll see.

This entry would have been pretty short, so I think I'll go ahead and post what happened from the beginning, to where I first posted here and catch it all up at once.

Don't worry, I don't really expect anyone to read it all in one shot, there won't be a test later. Just read it at your leisure.

Thanks.

10/12/2010

Heartburn: Could just be heartburn, could also be preeclampsia.

Just before we went to bed, Heather said that she thought she had heartburn. I kind of shrugged, like “Meh. Chicks get heartburn when they’re pregnant. No big deal”. I told her it was normal and went to bed.

A while later, she got up around 4:00am while I was asleep in a bit more pain and took a shower thinking it would make it feel better. No dice. By the time I got up to get ready for work, she had been up most of the night, and said it felt like her belly was burning. She had a doctors appointment later that day, so I figured she would bring it up when she was there and they would know what it was and what to do about it. Again; Not a big deal.

I went to work and she called me a bit later saying it was hurting a bit more and that she was going to call her doctor to see if she could get in early for her appointment. I told her not to worry, just call her doc and get in as soon as she could.

She called a bit later and said that when she spoke to her doctor, they asked her a series of questions and Heather’s answers led them to believe that she might have gall stones, and that it happens to a lot of pregnant women. Hmm. Starting to get a bit worried now. Not alarmed, but I decided to wait and see the results of the ultrasound they were going to do on her gall bladder.

Once again, she called me back to say she was starting to get scared and wants me there. I leave work and go to the Hospital and wait with her.

While on the way to the hospital, I call my loan officer that has been doing our refinance on our house. Long story short; Closing on our house had entered it’s third month due to lack of communication and relying on other people (many who I’ve never met, nor ever spoken with) to get time-sensitive paperwork done. Simply put; This thing is just not getting done for one reason or another. We had tried to close the day before, but were sent packing from the title company cause we were missing one piece of paperwork that never got completed. Frustrating. But, we are on track to close today which is also one day past all our verifications (credit check, employment verification house appraisal etc.) being valid. They were going to let it slide for a day.

Anyway, I have to call my loan officer and tell him that there is a medical emergency and we won’t be able to close today. Just going to have to start all over again next week or something. 

I arrive at the hospital and while I was on my way, they find out that her gall bladder is fine, but they think they might know what it is. Preeclampsia. And it might also be HELLP Syndrome, which is also terrible, and rare for how early in the pregnancy it is. I think; “Pre-a-what? Help who?” The doctor explains to us that Preeclampsia coupled with HELLP Syndrome is a disease that essentially makes the liver decide that the placenta is a foreign invader and needs to be eliminated. So the liver starts releasing toxins trying to kill the placenta. I’m pretty sure of two things at this point; Heather doesn’t care too much for poison, and our baby probably needs a placenta.

The toxins will poison Heather and eventually, if left untreated, she and the baby will die. The only known cure is birth. Heather will be 25 weeks along in a couple days. Obviously, this is going to cause problems.

The doctors decide that the medical facilities are inadequate for the situation, put an I.V. in Heather and call for an ambulance to take her to St. Luke’s on the Plaza. I nervously follow and get to the hospital where Heather is already in a room being tended to. Her blood pressure is really high. about twice what it should be. Not good.

They start her on fluids and start taking blood to send to the lab. So for a while, we just wait. I have to say; the room that we're in is really nice. It's huge, nicely decorated and she's the only patient in it. Pretty sweet. Doesn't really fix the situation or matter what the room looks like, but being somewhere really nice and clean kind of  helps you relax. Yay insurance.

We get her first set of labs back and they send a Doctor in to talk to us about it. It is Preeclampsia, and HELLP Syndrome just like they thought. The Doc fills us in about what the disease is and what it means, and then tells us that she's not going to be pregnant within 48 hours. "WTF?" He tells us that this in not a choice, this is a fact. Heather and I just kind of looked at each-other as if to confirm that we both heard the same thing.

Naturally, we ask what's going to happen to the baby. He tells us that he wants to put her on a drip of Magnesium to keep her stable and that it will keep her from having seizures while they inject her with steroids. The steroids will help the baby's lungs develop a little faster so he has a better chance of survival. They would like to be able to do two rounds of steroids if her body will allow it.  We tell him "Do whatever you have to do." this phrase has been uttered countless times since then.

So okay, we just found out we're going to be parents three months earlier than expected. I think we just decided "we can do this" and accepted it. Obviously, we were both thinking of all the things that could go wrong, and the possibility of losing the baby. We're pretty blunt with each-other when we talk and agree that we should hope for the best while expecting the worst. This could go horribly wrong in a lot of different ways, but there's really nothing we can do about it. The situation isn't going anywhere, so we just mentally jump right into it and decide to deal with the blows as they come. We're really scared, but really calm about it. Time to get to work and be cooperative with the staff to fix this.

I vaguely remember making some phone calls and sending texts trying to let people know what's going on.

They start Heather on the Magnesium and tell her it's going to suck. It does.

She becomes really irritable, nauseous and breaks out in a heavy sweat. Her breathing gets labored and she generally feels like shit. Good times. I feel really bad watching her have to go through all this crap, but all I can do is just try to make her comfortable and tell her it's going to be okay. This is the first of a week of white-knuckle roller coaster nights.

10/13-15/10

Wait it out, then wait some more.

The next couple days are just nervous waiting punctuated by changes in medication and diet. She's been on solid foods, liquid diet, fluid restrictions and nothing at all besides I.V. Back and forth, back and forth.

Heather is essentially put on pause with the Magnesium drip while they begin injections for steroids that will speed up the growth of the baby's lungs, getting him as ready as they can for delivery. They decide to do this as long as Heather's health holds up. How long is the question. She's going to tank at some point, but until she does, they want to continue with this until it becomes a detriment to her health. Her blood pressure is still really high and she has to lay on her left side as much as possible as an attempt to keep it lower.

I take her to the bathroom and it becomes like a ritual since she's hooked up to so much stuff. Unplug her heart monitor, undo her blood pressure cuff, gather up her I.V. cords and roll her I.V. pumping station with her into the bathroom. She then had to pee into a little bowl that went over the toilet that caught her pee so they could make sure that all the liquid they were giving her was coming out.

So she would finish, and I would take her back to bed with all her contraptions, plug her back in and wait some more.

They had tried getting her to use a bedpan, but she couldn't convince herself to pee in the bed. I don't blame her; Easier said than done.

I spend my time trying to make Heather as comfortable as I can, and running back and forth to the house to change clothes and feed the cats. Lots of driving, lots of back and forth. The cats were champs about the whole thing. They knew something was up, but I can't explain it to them, even though I tried. They just looked at me like I was stupid when I told them what was going on.

Lots of family coming in and out. My cousins and Aunt came up from out of town. My cousin Shelley had been through the exact same thing with her son. She was an invaluable resource of information from experience, and really helped to keep Heather calm during the whole thing.

We mostly hang out and try to crack jokes, visit with family; Aunt's, Uncles, Brothers, Sisters, Nieces, Nephews, Cousins, Parents, Co-workers and just try to stay mellow for Heather's blood pressure. At a certain point, the nurses suggest we keep visits and activity to a minimum so her blood pressure stays low.

Heather gets one final ultrasound, and we get to see the little guy on the screen for the last time before he comes out. The ultrasound tech takes all his measurements, vitals and tells us he looks perfectly normal for where he is in the gestation.

Sorry that you have to come out so soon kid. I wish you could cook a little longer, but it's too risky.

We also realize that we have just about no time at all to pick a name for the little guy.

Heather and I had not really got past the joking around stage of picking a name. His nickname is Redsauce. Not really even sure how we came up with it at this point, but that's what we call him. I think we had pasta one night and he got really active afterwards. He has been really squirmy during the whole pregnancy. Apparently he feels he has things to do. Every time Heather had an ultrasound, he would never hold still. Cute.

So we had his middle name picked out; Sigvald. It's an old family name, and the name of the first one of my relatives to have the stones to start a life in this new country called America that was being started up. Incidentally, it turns out that this was also the middle name of my Grandpa. Even better, he was truly an awesome person.

So we start combing sites on the net looking for cool Norwegian names. Of course we find cool stuff like Ragnar, Odin, Torstein etc. but those are kind of heavy names for a kid. I don't want him to have to fight the entire time he's in school. We find one we like; Omi. Sounds a little Japanese, but we like it. I can only find one reference to it on the net. Hmmm. Kind of suspect, but again, we like it. We decide to sleep on it and see if we like it in the morning.

10/16/10

LWA: Livers with attitude.

Heather starts to feel pretty lousy and she says her belly is burning. Obviously, this all sounds familiar.

Around 2:00 am, Heather says she's really in a lot of pain. Like a tremendous of pain. Her blood pressure is going up even further, and  I can tell things are going downhill pretty fast. I get the nurse and she starts giving her all kinds of oral medication to ease the pain, and get her stomach to calm down. A little while goes by, and none of this seems to work. Heather gets to the point where she is balled up on the bed crying and just about screaming at me to do something. I've never seen her act like this before.

I tell the nurse what is going on and they draw labs to see what her levels are. I take a quick nap (pass out from exhaustion) The nurse comes back about thirty minutes later with the lab report. Her levels are going up in a bad way. Her liver is throwing a tantrum and back with a vengeance.

After a quick debate between the Doctor and a couple nurses, they decide that she's had enough and it's time to prep for delivery. Here we go. I send out a mass text to family letting them know that it's baby time.

Everything happens really quick; The nurse tells me to gather up all our stuff since we won't be coming back to this room, throws me a set of scrubs and tells me to meet her in a room in 15 minutes. Keep in mind, I have had only a couple hours of sleep in the last 3 days and it takes me a second to get it together. I just start throwing stuff in bags and jump in my scrubs. Heather seems to be getting worse by the minute. She's scared and crying. I feel really bad cause again, there's nothing I can do for her except tell her it's going to be okay.

No sooner than I'm finished packing and dressing, the nurse comes to get me and we wheel Heather out in her bed to go get a spinal block.

A nurse tells me that I'm going to wait in a room while they do the spinal, they're going to come get me in less than 15 minutes and to be ready to go do this.

We wheel Heather  down the hall and I hold her hand telling her everything is going to be fine. We finally get to a door and they tell me to wait outside while they do the spinal. Fine no problem.

They wheel her through the door and I'm left in this series of rooms where there is literally nobody around and it's completely quiet. I pace for about 10 minutes and then finally decide to sit down. About another 10 minutes go by and I decide to catch up on my pacing.

Something is wrong. It's been too long. Another tense five minutes go by and a Doctor comes through the door and tells me that the spinal didn't work. She can still feel when they touch her. Her legs are numb, but that's it. They can't risk her being able to feel the operation so they're going to knock her out. Probably for the best. This also means that I can't go. This sucks. I was all amped up to do my part of.....well, watching.

They tell me they'll come and get me as soon as it's done.

I sit back down and begin to text a couple people in the waiting room to let them know what's going on.  It seems like an eternity.

A little while later, the doctor comes to get me and tell me that everything seems to have gone okay. He also asks me if I would like to go see my son.

I get led down another hallway into a room where five doctors and nurses are tending to him. He's so tiny. He's wrapped in a plastic bag, and already has a breathing tube. They weigh him and say he's 770 grams. There's a funny moment when I ask what that is in pounds, and nobody knows. But they assure me they'll find out. They do; 1 pound, 11 ounces. Tiny tiny tiny.

He's really cute too and looking a bit pissed. I was just in awe. I thought; "Holy shit! I'm a Dad!"

I take a couple pics with my cellphone, and they tell me for future reference that I can't bring in a phone cause it interferes with some of the equipment, but to go ahead and snap a few real quick.

I thank everyone for what they have done for us, and now have to fill out a little paperwork. To tell you the truth, I don't even know what it was, something about who's kid this is and what is his name. I tell them Omi. Getting closer to being stuck with this name.

The staff looks a little busy getting him set up, so I decide to get out of their hair and ask if I can see my wife.

They take me back to the room I was waiting in which is the recovery room, and I see Heather. To put it bluntly; She's knocked the fuck out.

I ask her a few questions to which she doesn't really make any coherent response, and tell her she did good. It's going to take a while for her to come around.

I go out to the waiting room to tell everyone what happened; that he's here, everyone is okay and yes, I have pictures which I message to everyone there. Well, back to the wife. Sorry, no visitors. She doesn't feel well and was pretty clear about that part if nothing else.

A little while later, I'm trying to talk to Heather to get her to come around. She seems to be understanding me, but isn't quite with it just yet.

I wait a bit longer, sending messages and texts, and generally trying to keep everyone out. Heather feels awful and doesn't want to see anybody right now. Understandable, she's pretty confused and not feeling well. I notice her blood pressure is going up.

The recovery nurse keeps checking on her and seems to be looking more frustrated as time is going on. Not frustrated with Heather, but frustrated at her vitals and the testing she's doing on her. I start wondering at this point if something is wrong. She has a catheter and the stuff in it looks like blood and rotten orange juice concentrate. The nurse says she wants her to be able to pee more.

I've been to see Omi a couple times by myself at this point. It will take a minute to get used to the ritual; Walk down the hall to the NICU, (how do I get there again?) get the phone outside the bolted doors and announce who I am, who I'm there to see, answer a couple verification questions and get buzzed in. Step up to the receptionist's desk and sign in; find my baby's sign-in page, write the date, time and sign the line. Step over to the sink and use the surgical scrub; three pumps, work the stuff all the way up to your elbows. It's really gross feeling, kind of slimy, smells like a mix of cleaning supplies, but dries fairly quickly. Go to his room and use more hand sanitizer. Then I can look at him in his incubator.

A little later, I take my Aunt and Cousins to see Omi since they are going back home in a while, and they stop in quickly to say bye to Heather. They really helped out a lot coming up to be supportive. They comment that Omi is cute,......and tiny. That he is, on both counts.

Back in recovery, I'm really losing track of time at this point, and becoming delirious from lack of sleep. I try to get Heather to eat ice chips and take small sips of water. She's fading in and out of consciousness. Her nurse is starting to look worried when she comes to check on her. I ask if everything is okay, and she says that Heather is fine, she's just taking a bit longer to recover than she thought. I ask the nurse how long is normal, and she kind of pauses and says "Umm.....About two hours". I do some figuring and realize that we've been in recovery for over six hours. We wait some more. Heather's blood pressure is getting worse and her catheter looks like a murder scene cause her kidneys aren't working right. Her left lung is completely full of fluid from having to lay on her side and breathing shallow for so long. This isn't starting to look very good.

The nurse has been tweaking her I.V's for a while, giving her medication, monitoring her pretty closely, and is still looking really frustrated. I start freaking out a little bit. I start to drift out in a chair, and hear the nurse in the other room talking to what sounded like a Doctor. I don't really remember exactly what was said, but in a nutshell, it was "Her blood pressure is still going up, she's not peeing, her lab work is bad and she's not getting any better. She should have been gone a long time ago. What do you want me to do about it?"

Okay, now I start to freak out but try not to show it. I start talking to Heather; "Hey,...you have to wake up. Seriously, you have to wake up NOW. Please drink some water. you need to pee. Let's get you out of here and go see the baby. Wake up and drink some water. You have to stay awake and get better." I don't overreact very often at all, and pride myself for staying calm in tense situations, but I honestly thought I was possibly going to lose my wife for a minute there. Not a good feeling.

I don't tell anyone what's going on cause some people had already been getting over excited about her condition before anything had even happened. I don't want to add fuel to the fire, or get everyone worried and overly concerned; We're not quite there yet. So I just stay quiet for the time being.

This goes on for I don't know how long and the nurse comes in and gives her some more meds. It seems like a really long time to me. Her blood pressure finally hits the threshold we're looking for, and her lung has emptied enough of the fluid buildup.

At some point, the nurse decides and gives the okay to go ahead and move her. Hell yeah. This means that she's stable and well enough to get out of this room.

They call for transport, and we go down to see Omi. Part of how they do it; Leave recovery, go see the baby on the way to the room you'll be staying in.

Yes, let's go please.

We go where Omi is and they wheel Heather's bed up to Omi's incubator. I can tell Heather isn't really registering what's going on cause her reaction is pretty muted. I find out later that she has almost no recollection of this even happening. She even told me and we joked later that she thought they were moving her cause she was going to die. I told her "No no no. They were moving you cause you were NOT going to die. Moving good, staying bad."

We move on to where she is going to ride out the rest of her stay at the Hospital and end up having to wait outside a room for a few minutes while housekeeping finishes getting her room ready for her. I'm starting to hallucinate at this point and I'm becoming unsteady on my feet from lack of sleep. The last few days have been a complete blur of activity; boredom, panic, shock, sadness and happiness. I try to process what all just happened.

A thought crosses my mind and while we're waiting I ask the nurse helping get Heather (who is crashed out) moved into her room; "Hey, this may sound like a stupid question......but what day is it?" She kind of chuckles and says "It's Saturday."

"Oh. Okay thanks." I replied and looked away. She says "Hey,.....that's not a stupid question at all." And we both laugh a bit.

We get Heather into her new room and they drag in all her machines and get her set up and dialed in. She's stable, starting to pee (still looks pretty bad) and her blood pressure is improving a bit. Once they leave, I decide to call Heather's sister Kim and ask her if she's busy. She says she's not and I ask if she can come and tag me out for a little while so I can sleep. She says no problem, she'll be there in a little bit. I fight sleep and Heather starts to wake up a little. When Kim shows up, I'm about to keel over. I don't think I've ever been so exhausted in my life. I have to take a nap for a half hour just so I feel comfortable enough to drive home.

Heather is stable and resting, so I go home, feed the cats, change the litter box, bag up and put out the trash, get some more stuff I need for staying at the Hospital, take a shower and go to lay down. What a fucking day. At least everyone made it.

I set the alarm on my phone, and sleep for about an hour and a half. Okay, I feel a little better now, back on duty.

I call to make sure everything is okay with Heather, check to see if anyone needs anything, gather up my stuff and go back to the Hospital.

The first night in the new room is a little odd. Hell, the whole thing is odd. I'm a Dad now. And a little earlier than I thought. I pretty much wait on Heather hand and foot the next couple days while the nurses take care of all the medical and maintenance needs. things start looking up a bit. We're not out of the woods, but I can at least see where the clearing is now.

Heather is on a fluid restriction and can't eat food yet. She's living on ice chips right now. Awesome. Of course I try not to eat or drink a bunch of stuff in front of her.

She was so thirsty one night that she ate an ice cube that had dropped into her armpit cause they would only give her a really small amount at a time. Even the nurse thought that one was hilarious.

10/17-21/10

The next few days are a blur. I'm forget some things here and there from lack of sleep.

I wait for Heather to mend, and go see Omi. Back and forth.

Heather is on strict bed rest for a while. No getting up at all.

Over the next couple of days, Heather's kidneys are working a lot better and her catheter contents look a lot like beer. It goes from Guinness to Amber Bock, Killian's Red, Corona and finally just crappy old Natural Light.

Her blood pressure is up and down but mostly trending down. They try all kinds of medication, and finally find some that works for her. She even had to stay an extra day in the end cause it was still too high to let her go home.

She finally got to get a shower on the 19th. It was time. They give you these wipe pads to do baths in bed, but it's just not the same as some water beating down on you.

Her hair was so matted in the back from being in bed that I asked her if she just wanted to go ahead with dreadlocks. Her back looked like she had been laying in a tub for a few days. It was puffy and wrinkled. Yes, later on that's going to peel for a while.

Heather has been pretty heavily medicated, but I guess that's standard practice when they cut your stomach open, move your internal organs around, pull a baby out, put your organs back, then staple it back together. Go figure.

She has a button on a timer that lets her get pain meds every eight minutes if she wants them. Sometimes she does, sometimes she doesn't. She's pretty loopy in general. Most conversations end with me thinking "What the hell is she talking about."

She finally goes on solid foods again and is ready to work on getting out of here. She woke up with a mission one day and said "Fuck this, I'm getting out of bed and going to see my son."

When she is finally coherent enough after her shower, I get a wheelchair for her and take her to see Omi.

I have to teach her how to get from one place to another in the Hospital. She's really only seen two rooms since she's been here and has no idea where anything is.

I'm an ace at navigating the Hospital at this point. I know where the best parking spots are, how to get back and forth to the cafeteria really quick and the security guards are getting to know me by sight now.

I show Heather how to get admitted to the NICU, how to sign in, scrub in and where Omi's room is.

We make several trips down to see him over the next few days and spend time getting to know him, his Doctors and Nurses, and what all the equipment does.

A lot of the details escape me since we're just getting used to all the jargon and terminology. In a nutshell; things could better, but things could be a whole lot worse. Every day that goes by and he's still here is a good day and one day closer to him being able to come home.

He's under a blue light most of the time. The light is for phototherapy which will get rid of jaundice, which a lot of babies (especially preemies) get.

He has to wear these little goggles that protect his eyes from the light. They're so tiny.

They want to start feeding Omi soon. Heather has been pumping breast milk and they give us these tubes to put it in and label, then we bring them down to them so they can store the milk. The first time we got some, we really weren't expecting it and had to call the Nurse to come help us so we didn't waste it.

When we got it in the proper container, I go running down to the NICU where Omi is to give it to his Nurse and I'm all giddy. I hold up the tube. "I have milk!" I tell his Nurse. She says that's great and takes it from me to store.

"Kthanksbye!" I tell the Nurse and hurry out the door realizing I just acted like a seven year old girl.

We're there one more day and then it's time to take Heather home. I have been back to work for a couple days at this point, but already have my normal day off so I get to take her.

I wheel her down in her gown because I'm an idiot and forgot to bring her clothes that she could wear, apparently forgetting that she just had a c-section a couple days ago. Whoops. Now it looks like I'm busting her out instead of taking her home. At least she had sunglasses. She hadn't been outside in a week and seemed really grateful to be outside. The sun was out, the wind was cool and she could swear I hit every bump on the way home. Sorry kiddo, we live in MO, no such thing as a smooth ride.

We get home, I put her to bed and then go to the pharmacy to get all sixty-three of her prescriptions filled. Oh, and a Big Mac. Heather wants a Big Mac. What the hell, she earned it, right?

The cats are really happy to see her home and so am I.

10/22/10

Just got back from seeing Omi. We got to touch him again for a little while. It's weird but cool to feel him breathe. The nurse and Doctor on duty talked to us about him having his ventilator tweaked a little back and forth which is normal. His PDA is closing a little, but not as much as they would like. They might try one more round of medication, and if that doesn't work, they might have to operate to close it. Not a big fan of that idea, but whatever has to be done. I guess it would involve a small incision along the side of his ribcage, and they would then spread his ribs apart, move the lungs aside and clamp the valve closed. The Doc says it's a fairly common operation for a baby his size. We still don't like it though. Sounds painful to me.

10/23/10

There was another baby that got moved in to Omi's room yesterday. I guess the baby's family was pretty loud and disruptive, so they were planning on moving the baby in the morning. They did. Pretty nice that the staff is considerate enough to do that instead of just packing them in like sardines whatever the situation.

I also noticed the blue phototherapy light that was being used for his jaundice was sitting in a corner. They say that most babies have to go right back on it within a day of being taken off, but he seems to be okay with it. Good for him, it makes for shitty pictures anyway.

And now we get to see his eyes. Cute. I don't think he can really see much, but he seems to look in our direction when we're talking to him.

Anyway, it was nice to touch him again, and kind of sweet cause when I took my hands away, he got pissed and made a squishy face. Awwww. He loves his Daddy.

10/24/10

Not a good day. Omi is having belly problems. His stomach was distended and full of air, probably from the breast milk. It's like his intestine is blocked. Great. I think this is the other shoe dropping. Heather was up there all day with him, and I just got off work and we're heading back down there. I talked to Omi's nurse and she said that they were watching him and waiting for results from an x-ray. She said from outward appearances, his little tummy has gone down, but the x-ray will show for sure. If it's bad and his intestine is blocked, the worst case is that he will have to go to Children's Mercy Hospital to have surgery. Obviously, we hope this is not the case. On the good side, his PDA valve is not getting any bigger, so they might not have to do any more indomethacin.

And he's back on the stupid blue phototherapy light again. For now.

10/25/10

Talked to Omi's nurse at 5:30 am. She said that the x-ray on his stomach looked a little better than it did yesterday. All other tests and vitals were normal.

They did another scan at 11:00 am, and the nurse called us to tell us that it's not getting any better or worse. Basically, she said he needs to poop. They were about to give him a suppository and were "hoping for total blowout". Hahaha! Poop jokes. We are getting ready to go see him right now. I guess he's really irritable today, and they are trying to handle him as little as possible. Poor little guy, his belly hurts and he's uncomfortable.

He had another transfusion today. Uneventful. What can we say, the kid loves new blood. Our little vampire.

Also, we finally close on our house today at 4:00 pm. Almost four months from when we started this whole process. It's pretty far from the biggest thing on our plate right now, but it will be really nice to put a bullet in it and call it done.

Omi pooped! He seems to be feeling better now and less irritated. Good for him. We find out later that his x-ray is showing the swelling going down. Also very good. It seems like the scare was just that he couldn't go.

We closed on the house. It's finally done. No further snags or anything, just a bunch of blue ink. Sign here, initial here, blah blah blah.

Saw Omi one more time and he's on a new ventilator. It's a high frequency one that is pretty intimidating looking. It makes his little chest vibrate really fast, and looks weird. But they were having concerns that he wasn't expelling enough CO2 quickly enough. So this machine does really quick inflation / expulsion of air for him. He still does some of it on his own, but he gets a chance to rest more and let the machine work. After all, he's not supposed to be breathing yet, so this just helps him along.

The funny part is before we went up there this evening, the Doctor called us to tell us what was going on. We talked about his x-rays and that they were doing the new breathing machine. They had prepped us on the new machine a few days ago.

The  part I forgot about when talking to her is that Kim was up there and there are rules about what the doctors can tell anyone besides the parents. So while we're fine with what's going on and it's not a big deal, Kim was sitting there watching a couple doctors and nurses moving things around, a lot of activity and firing up this big machine and hooking it up to him.

Realizing that, Heather told me to call back up there and let them know that it's okay to tell Kim what was going on. Omi's Doctor said "yeah, she looks a little wide-eyed and teary."

Whoops. Well, it is Halloween next week. Everyone needs a good scare right?

There was a point tonight though where they moved Omi to reposition him and he started becoming distressed. His tube needed to be repositioned so that he could breathe a little easier. When the nurse turned him, it did something with the machine and she had to reset it. When it beeped, I saw everyone in the unit snap to attention and look towards our room. One of the nurses asked if she needed help, and the respiratory therapist came in to see what was going on. It was a quick fix, but I appreciated how quick everyone was to respond, and how seriously they took it. It was nothing, but they were all ready to jump in and do whatever needed to be done. Good people.

10/26/10

Omi seems to be doing all right, minus the tummy issues. There were a couple more x-rays done today, and the first one was a little better, the second one was no better, no worse. So, his intestines and bowel are still dilated and his stomach still has gas in it.

They had pulled him from the super ventilator and put him on the regular one, but made the decision later to put him back on the big one cause he's still having a bit of trouble fully expelling the CO2. Blood gasses look good.

There's a disease that they call Nec. It's short for Necrotizing Enterocolitis. Bluntly, it means part of your digestive system begins to die.

The way they use the term Nec is to describe an event that sometimes happens in preemie babies where somewhere in the digestive system something starts to die. Could be the stomach, intestines or colon.

This is our biggest fear right now. He started with the tummy trouble as soon as they started giving him breast milk. If Nec sets in at some point, they would have to send him to Children's Mercy to operate.

From what they tell us, Nec appears quickly and suddenly, and has to be treated immediately. There are so many x-factors that could make it anywhere from a mild thing a baby has to work through, or could be fatal quickly.

Obviously, the younger and weaker they are if they get it, the lower the chance of survival. Since we have found out about this condition, we have been freaking out about his tummy troubles. They tell us that nothing about his situation points to it being Nec, but it is something that could rear it's head at any time.

This scares the fucking shit out of us. Heather is almost obsessed with it right now. We just want our little guy to be okay.

He did have his eyes open for a while today. He's just so cute. I got a bunch of pictures.

10/27/10

Heather spent a few of hours with Omi today just hanging out. I guess in the morning he had an episode where his heart rate dropped dangerously low and he had to have his oxygen cranked to recover. The nurse said he actually scared her for a minute. He seems fine for the moment now though.

His blood gasses were a little worse today, and he had another transfusion today. I guess his stomach and intestinal issues are getting no worse but no better either. He will have another x-ray today that might tell more. His belly is still a little swollen and his intestines are still a bit dilated.

Heather bought him a book and read to him for a while and did some hand containment. Containment sounds odd, but that's what they call it. Basically you put your hands on him to give him some resistance and boundaries, like swaddling a baby in a blanket. He really seems to dig it and calms down a lot when we do this.

Just got back from seeing Omi. His blood gasses are much better and his stomach x-ray is still no better, no worse. Got to touch him for a bit and he fell asleep while I was holding his little feet. I read him a story and he just chilled while I was talking to him. Pretty good day. We'll see what tomorrow brings. They are trying a different and bigger tube to try and get some of the air out of his stomach. Hope it works.

10/28/10

Heather spent a good part of the day with Omi and he had a pretty good day. One of his regular nurses is going on vacation for two weeks after today. Don't get me wrong, all the nurses are highly qualified to take excellent care of him, but I like the fact that for the most part only a couple of nurses take care of him cause they are getting to know him pretty well. The staff is outstanding, and I can't say enough good things about them.

Omi had a really good day today. His blood gasses were great, his oxygen level on his ventilator was down (a good thing) and he took a huge dump. So big in fact, that all the nurses knew about it. Since this was becoming an issue, enough that they had to stop feedings, this is a huge deal. Heather has been reading him "Everybody Poops" every day. She bought it in hopes that the would start pooping. Apparently, it worked. Yay Mom. And the bigger tube to release the air pressure in his stomach worked. His x-rays of his stomach and intestines improved. Go Omi

10/29/10

Another good day. He started out the day a bit rough; Drops in heart rate, high oxygen levels not so great blood gasses and becoming a bit acidic on his PH levels. But he seemed to get normal throughout the course of the day. Heather spent a few hours with him and read him Everybody Poops again. Again, it worked. His x-ray showed that his stomach and intestines are continuing to go down, and he might be able to start feedings again tomorrow. He also got his umbilical lines taken out today. The lines are inserted into where they cut the umbilical cord and they replicate the nutrition he would normally get from the placenta.

They usually try to have them out within five days, but he needed his blood gasses done so much that they left them in a bit longer than normal. The drawback now is that they have to stick him to get his blood gasses. Obviously this is painful to him which makes us a bit sad, but it has to be done. The main concern is that when they have to stick them so many times, (either in the hand or foot) that they can develop blood clots. The risk is that some babies have lost hands this way. It goes without saying that we would rather this not happen.

He also had another blood transfusion today. The poor little guy just has to go through so much.

It's odd; they essentially try to recreate a situation as close to the womb as they can and let him finish cooking. They don't do things for him per se, they help him along and react to what he needs to survive. An elaborate nudge in the right direction if you will. Little tweaks to his care according to what he needs.

We should be able to start what they call "Kangaroo Care" pretty soon since his belly leads are taken out. What that means is that we get to hold him on our chest skin to skin for a while. I can't wait until we can start doing this. We can touch him right now, but it would be nice to hold him. Yeah, I'll probably cry like a bitch the first time.

10/30/10

Omi had a good night, and seems to be having a good day. His alarms have been going off a lot less than in previous days. He pooped a little again, but his x-ray showed a bit of dilation in part of his intestine. We went to dinner before going back to see him cause we had promised each other we would do something normal today. It's hard not to feel guilty about doing anything other than go see him. We sleep in; feel guilty. Watch t.v.; feel guilty. Go to work; feel guilty. I know it's normal, and the staff is taking great care of him, but it still sucks. There's not a lot that we personally can do for him except spend time with him. We read to him, talk to him and rest our hands on him so he knows we're there. It does seem odd, but he actually knows who we are. When we come in and start talking to him, he starts fidgeting and jerking around. When we put our hands on him, he calms right down. He's a funny little guy.