Every time I feel unfortunate...

In 185 days Logan will be three, a roundabout way of saying he is roughly thirty months old. Of that time he has only been home seventeen months. In these seventeen months I have had some wonderful and horrible thoughts. I am proud of some thing that have happened, and not of others. I have needed to replace three phones since he's been home:

1. I slipped on ice and my options were to let my right pocket (where I keep my phone) hit the frame of the truck, or slip and fall with Logan in my arms. Goodbye phone, hello bruise, and he will never hear that story - for all I know he'd feel guilty about something that he could not have helped.
2. I left my phone where Logan could get to it and he threw it causing it to come very nearly in half.
3. I was letting him play with my phone at the library. He dropped it and the speaker popped out. Only the speaker, otherwise it functions perfectly.

In this time we have acquired four car seats. but that is kind of natural, after all kids grow. Also, you need  backups for grandma's car.

I've wondered if it was a good time for us to have a child; I've hated the loss of freedoms, including the ability to work more hours and get more money; I've lamented my lack of sleep, until the stage where he slept through the night regularly. I have done many things I thought I might not do.

I lost a job because he was ill and I chose to be with him rather than at Walmart. It was especially painful because I felt at home there. I had friends whose company I enjoyed, especially at lunch. I had times when I was glad for a quiet lunch where it was best if I set an alarm, just in case. But in the end, I made the right choice, and Walmart only proved to show that they were awful: after being the cause of ruining my right hand, they tossed me for such a reason despite the fact that I was eligible for FMLA.

I spent the better part of a year doing nothing. While it was glorious at the time, thinking back it put a lot of strain on Amber. At the very least I could have done more to clean the house and, maybe, even return to school. In the end of the whole mess I got my CNA, the recession finally gave up the ghost, and I got two job offers: Home Depot, or working at a nursing home. I went for the CNA job. It's had it's ups and downs, but in the end I decided recently that I would remain there rather than take another job... until I complete my degree next semester. Muwahahahahaha.

Through all the good times and bad, when I am happy and when I am sad, when I feel unfortunate I think of the family I have made and the son I have been lucky enough to have. So, on June 2nd I will be done with college, and Logan will be three. I propose we have a party to celebrate.

It's almost been a year since we used this thing. I realize that it was cute and we tried to set up a theme for the way the blog looks, but it is so hard to look at. Not aesthetically displeasing, so much as... wow it is really white and packed with some extremely bright colors. Anyway, the reason why I came here:

Damn it sure is nice going to sleep knowing I will, at one point or another, be woken up by my son screaming and crying in his sleep. So glad he's learned how to have nightmares. I can only imagine what they are about.

God knows everything I have bad dreams about I can justify. I'll wake up and the woman I care about won't be dead, I won't have a tiny package, and there's no way the squirrels will get the better of me. But him? He's been chopped up and stitched back together 13 times, all while he was so tiny that even if he'd been conscious enough to come up with the idea of fighting back it would have been futile.

I just want to pick him up, but I know that if I do he'll be up until he falls back asleep again. So I guess I'll just sit there and not read. In the dark. Because that is better than the possibility of waking him up. And heck, who knows, maybe one day - when he is capable of speech - I'll hear something out of it that'll clue me in as to why he is having nightmares.

But the dreams when he babbles and laughs... they make it all worth it.

Tired Baby

It is 23:32 at the time I am writing this. Logan is awake and playful. This is a major problem.

Logan does not fall asleep at bedtime. When he was released from the NICU I spoke to them specifically about his bedtime habits so I could mirror them at home. I spoke about his napping habits. I tried to figure out how best to get him to sleep on a regular schedule for him. I did not care if my sleep suffered, I thought that made me a good father. Apparently the good father thing, is the thing to do if you want your child to eventually wander into an unhealthy sleeping patter. Tomorrow we begin a fun, new little program to help us learn when to sleep and when not to. Hopefully this will teach him what being tired is and he will learn the appropriate response:

Logan and I will wake up around 0600 every day. I do not expect this of Amber, after all she works third shift and is still at work at 0600. Waking him will be the first thing I do. Not even getting dressed will come first.

After getting dressed and snacking we will take a walk. Nothing major, just around the block at first. Eventually it may get bigger, since I don't need to leave to get Amber until about 0700 or so.

Around 0800 I should be home, even on the days Amber works, we will eat breakfast at this time. Afterwards we will set up his bouncer in the kitchen and I will do the dishes.

By 0900 the dishes should be done, and we will go to the living room. This will be play time. But it will be play time with a purpose. I will use this time to try to get him to chase me back and forth across the house. He will learn to crawl better. He will eventually learn to run. When he gets bigger this will be done outside, maybe at a park.

By 1000, whether he actually is or not, we will be bored with the park. We will go home and watch a movie or something to that effect. This will be his first chance for a nap.

At 1100, regardless of if he is asleep or not, we will begin to make lunch, eat lunch, and then do the dishes. If the house needs tidying up this will be the time to put Logan in his bouncer (for now) and clean house. Later in life I will hand him the mini-vac and tell him to go nuts. He will, inevitably, vacuum something that does not need it. He may also suck up something important. I will learn to keep thing put away properly. Until then... the mini-vac is unlikely to actually damage anything but paper.

By now it should be 1200 and Logan may be getting sleepy. This will not be allowed to go anywhere. We may go for a second walk, chase some more, or just go outside. I suppose we will need a garden, that will give me (and when he is older, Logan) something to do.

It should be 1300 by now, if not later. We will come inside and put on a movie. He can sleep now, for one hour from when he naps out. If he should not fall asleep before 1400 he will not get a second nap. But, being generous I shall allow bedtime to be early that night, more on that later.

It should be between 1400 and 1500 now. It will be snack time, and while we eat we will think about dinner, which will be at 1800. But that is for later. From the end of snack time till dinner time will be more play time. If he did not take a second nap it will be play with dad time, to ensure he does not fall asleep. If he IS capable of playing (somewhat) on his own I will use this time to figure out dinner. If dinner is already taken care of we'll just pop in another movie, and provided it ends before 1800 we'll get to watch the whole thing.

It should now be 1700, and depending on the complexity of dinner we will start making it now. When Logan is small he will be able to play in his bouncer, or on the floor with some toys. When he is older he will be able to be my go-fer. When he is older still, he will help me cook. Or Amber, or whoever is cooking. Regardless of the details, he is the designated assistant chef.

At 1800 we will eat, rest our bellies a short while, then we will begin trying to wear Logan out. This will continue until he is on the edge of passing out. I will then continue playing, but not specifically to tire him out. When he is unable to stay awake any more (it will be tricky until I figure out where that point is) I will pick him up and rock him in my arms while I walk to his room. If Amber is home she may do this. In either case the other of us should be preparing his g-tube for the night. Before he falls asleep we will hook him up, and put on a movie for him to fall asleep to.

By now it should be anywhere from 1900-2100 and Logan should be in bed asleep. I will, at this time, sweep, vacuum, mop, etc... at first the noise of the vacuum will wake him back up, even if I close the door. This is ok, he will get used to it eventually and be able to sleep through it. From the point where he falls asleep, till we do, will be mom and dad time.

Thoughts? Local people, is Columbia Street a safe place to be walking around at 0600?

Today Logan finally had his hydroseal corrected. I can now proudly say that my son has boy parts. He no longer possesses the biggest balls of them all. Despite having just had this surgery today in the AM he is wanting to turn over, crawl, and stand. I doubt he'd be thrilled about sitting, but you never know. In two days he can bathe carefully. In two weeks he can return to therapy. And by then we'll be in a new home. Yay for changes!

Logan is asleep right now so I may as well take this chance to update this thing. I won't even try to recall what was going on last time I posted something on here, because it's been over a month and I have slept a lot since then. I do know that he is now eating double what he was sent home on, every two hours instead of every three. He is sleeping quite well at night except for those times that he seems to have his own, non-sleep-related, agenda.

I think crawling may be in his future, or standing. Who knows, perhaps both? In the meantime we are working on reasonable naps, bedtime at or around the same time every night, and a little bit more solidity to his poop. If those things can be achieved life might just be good.

Been A while...

So I noticed that he last entry was Jan 24th. Well over a month ago... eek. Well I suppose this one should start with the surgery that the last one was waiting on: It went well. His bowel is reconnected and functioning properly as can be expected. No real complications except too high of feeds resulting in a little too loose of stool.

Since then, however... he was able to go home Feb 29. It's been a rough few days, but we are figuring each other out. Besides, no offense intended to either NICU he's been in, he's been a little spoiled the past nine months. Now he's got to deal with the same two tired people to take care of him always. No fresh meat in twelve hours, nobody taking care of you while the other person rests (theoretically, yes we could take shifts but... one that doesn't even SOUND right, two you try sleeping with Screamy McBaby blowing up the world because he does not understand what is going on in his mouth).

He is teething, gassy, and learning to deal with home life. Our car still has a bit of an odor when we run the vent so I am loath to use it to transport him unless it is warm enough to not use the heater. The mechanic suggests we take it to a detail shop and get the engine compartment cleaned.

But, all things considered, my little dude is doing fine. Going to be interesting to deal with the two-a-week home care visits, calls from the hospital to check up on us, weekly pediatric doctor visits, etc... but I suppose it's part of the game when your kid is a premie gut baby.

Life happens, you live it or not. And the "or not" option carries some grim implications, so we carry on!

too much poop

So Logan's feeds had to be stopped last night. In two days his output from his ostomy trippled. They did some testing and so far he is negative for C Diff (a nasty stool bacteria). They restarted his feeds this afternoon at a lesser rate so we'll see how it goes. Poor guy :(

Otherwise he's been happy. He is smiley and interactive. He is TEETHING LIKE CRAZY. He always is nomming on his lil finners. (that's mommy for he's chewing on his fingers).

Uncle Charlie came by today and Logan just looooves him. They were adorable together. Charlie will be a huge mentor for Logan because he went through a lot of childhood surgeries and illnesses so as Logan gets older and wonders how to deal with his differences I'm hoping Charlie will help him out (I know he will).

Not much

Soooo. The reason I haven't been posting so much is cause there really isn't anything to report. Logan has been off all oxygen for about a week, now. He is very nearly up to full feeds through his g tube and nippling about 3 times a day. He gets a tablespoon of mashed sweet potatoes which he is totally in love with. He is going through ostomy bags 'cause they keep exploding. The nurses aren't emptying them enough, methinks. The omegaven is doing amazing things. His liver is beginning to get better. Hopefully now that Logan has gotten it, other babies at OSF can get it.

I'm looking for jumperoos if anyone has one. The doctor said Logan is gaining too much weight (which I totally laughed at him) because he's not active enough. We are looking for a cheap yet effective entertainment device. If anyone has one they are looking to get rid of lemme know.

Otherwise he's being awesome. He likes to smile and have fun. He goes for walks around the NICU in a little red wagon.

Warmies from Wonder Boy

I figured out that when Logan is asleep I have a lot of time on my hands when I'm in the NICU. I used to just nap when he napped but it's hard to sleep. So I am going to start making preemie sized things for other NICU parents for Carle Hospital. Even little things like tiny hats on your 27 weeker preemie makes you feel like your baby is a "real baby."

I'm going to make little blankets and little hats. I'm going to attempt to learn to make tiny booties and mittens.

If anyone would like to make their own preemie blankies or hats but don't have the time to go up to Carle I am there 3 days a week (I work there) and I'll drop them off. :D

Thinking and thinking

So I had a care conference with the Surgeon, the dietitian, and the Neonatologist. We pretty much talked about Logan head to toe.

• Logan had another EEG done to see if he is having any neurological issues. There weren't any results back just yet so I'll update when I hear from them.
• They are doing genetic testing to check for osteo imperfecta (a bone disorder) and another skin test to check for some genetic liver disease. His bones are looking good. There are no new fractures and the ones he had are healing.
• His oxygen is still on 1/8 of a liter and I take him completely off oxygen when he is awake. I had him off for 2 hours while awake, at 1/16 for 30 minutes after he fell asleep, and when he hit deep sleep I had to put him back on 1/8.
• His heart rate is doing nice. When calm and awake he is in the 120s with a slightly irregular sinus rhythm.
• His bowels are doing well. His feeds are up to 20 mL an hour and re-feeds are doing well. He's pooping once or twice a shift rectally. Usually a soft formed poopish poop and in a large amount. His stomach wound is doing well and is now left to open air. It looks kinda gnarly but isn't gooey at all. Just look like a shark took a bite out and it's scabbed over.
• Therapy is going well. He is turning his head to the left more often. He still doesn't want to reach and grab but he's getting there. He is kicking his legs more. We're working on getting his legs in a neutral position. He doesn't like putting his right leg in so we're working on that.

As far as future surgeries go I have some thinking and deciding to do. One of two things can happen:

1. In 6-8 weeks the Omegaven will have had time to heal his liver to be able to do surgery. We can do surgery while he's still in the NICU and have his recovery and go home about a week afterwards (depending on how well the surgery goes). The surgeon feels confident that this surgery will go better in the past because of the Omegaven improving his liver function and more importantly both sides of the bowel are happy functioning bowels. Before it was a somewhat happy healthy bowel connecting to a sad, lazy bowel.
2. Or we can take him home for awhile (after 6-8 weeks of letting the Omegaven kick in). Let him get bigger and healthier and then take him back to do surgery. Before this can happen I have to live in the NICU for 2-3 days and do ALL of Logan's care and prove to them that I am comfortable with this. The negatives is when he does have surgery he will recover in Peds. instead of the NICU.

Lots and lots of thinking....

On a less serious note, we were watching Logan sleep. His eyes kept fluttering and he was smiling and then the most wonderful thing happened. HE GIGGLED!!!

Most beautiful noise I've heard in my life. I love my lil one so much... I nearly cried from just a little squeak of a giggle...

New post, new post yeahhh

Logan's picture with santa creeps me out.... It puts the phrase, "Santa is watching you" in a whole new perspective.

So not much has happened with Logan. He is getting the Omegaven (cause I'm awesome). This is day 4 of him having it. He is at 1/8th of a liter of oxygen through his nasal canula. He is pooping from his bottom about twice a day. His ostomy poo is olive green and thick like ostomy poop is supposed to look like. He is still on the Methadone but a very low dose. They are weening it reaaaaly slow. Otherwise he's happy and wiggly. He kicks his legs and acts like a 3 month old. Sometimes he acts like he's gonna giggle then doesn't. He still doesn't really coo or make talking noises. But he is technically still young.

Merry Christmas!

I edited these photos to where his jaundice is less noticeable. He is so CUTE! I love you my little munchkin.

SWEET!

Logan extubated. He is doing well with it so far!!

Logan's First Six Months

Click here to view this photo book larger

Photo books are the perfect gift for any occasion.

smiles!!!

Doing good

Logan is statting pretty good. His oxygen needs are down to 21% when he's resting and 25% when he's awake. He is a little fussy but who wouldn't be with all broken limbs, a gaping hole in your stomach, and no food.

His heart rate is anywhere between 70 and 130 depending whether he is asleep or awake.

Other than being irritable he is doing awesome. Go my little man, go!

Doing Better

Logan is doing a little better. He had 2 brady episodes but he brought himself back up. He had one of his seizure like episodes and they had him hooked up to the EEG so they'll be able to look at it tomorrow when they download the results. His dressings look good and aren't saturating with blood and fluids as fast. They changed some of the packed dressings and day by day they'll pull a little more out and let it heal. They said his stomach is looking better. No temps. They increased his pain meds again and put him back on versed. They don't think the versed and the seizure like things are linked. I guess we'll find out. He is still vented but they didn't have to chase his O2 needs as much. All in all everyone seems satisfied with his recovery. I think that if I color coated the severity he was Red on Sunday. Burnt Orange Monday. Regular Orange today. Hopefully tomorrow I can report a bit of yellow :)

Oh and yes.....I'm a goof ball.

I won't let you.

Logan very nearly died today. He had been having bronchial spasms that closed his airways Saturday night. Every time this happened that had to give him breaths of straight oxygen. At about 8:30 Sunday morning he had a bad episode and his heart stopped. His oxygen went basicly to 0. They coded him and it was that scene from er. Chest compressions. Counting. Breathing. Loved one crying to come back.

It was all too real.

They were able to revive him after 2-3 minutes.

The decision was pretty much made to send him to a children's hospital. They sent him here: http://www.childrenshospitalofil.org/

It is downright the most beautiful hospital I have ever set my eyes on. There are so many places to explore and the detail is amazing. I wish we could have brought him here sooner.

The technology alone is amazing. The staff is so wonderful. I am saddened that he is so far away from me but I know they are taking care of my little wonder.

I love you Logan. Don't stop fighting. You are in a safe place and mommy needs you.

We don't know what is wrong with him. He is very sick. We don't know if he'll make it. Pray for my angel. Pray that if this is his time, to go with love. We all love him so much. My sweet baby boy.

Every tear I shed for you are kisses.

Mommy loves you more than she can express.

Sorry, it's been awhile.

A lot has happened. 12 days ago he was positive for a staph infection in his central line. They gave him antibiotics and it was gone 3 days later. They went ahead and did his surgery. That went well. He is a proud owner of a g tube and an ileostomy (again). He started running a temp shortly after and his recovery has been shaky. They thought it was post op yuck so they gave him some tylonal but ran some blood cultures (the normal 2) and waited it out. One came back negative and the second came back positive.....maybe. The neonatologist told me last night that it wasn't a positive positive, but more of a suspicious positive. So he did some other test and it came back negative. SO I thought he got a false positive. This morning the surgical nurse practitioner calls me and says that he most definitely has staph and they are going to pull his broviac central line and put a new one in at another location at 7:00am Wednesday (tomorrow). I'm like WTF?!?

Clearly communication in the NICU needs some improvement.

So I'm confused, she's confused, Logan is sick, and no one knows what to do about it.