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.
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