Friday, October 30, 2009

Stuck in another 'groundhog day' only instead of a new day to relive over and over we get to go back to an old one. As if the last 30 days never happened. Liam is back in the hospital. 911 had to be called and Liam and his mother got to ride in an ambulance with the sirens on and everything. The EMT would have shown them all the cool gadgets back there if he wasn't so busy keeping Liam alive. It was a rough day. But by the afternoon when Liam had calmed down and fallen asleep it wasn't so bad. Living in a hospital is a lot like riding a bike. It already feels like we never left. It is routine. It is comfortable. It is sad.

Liam was brought to the ICU due to respiratory distress. Chest films show some excess fluid in the lungs making his breathing more labored. He was unable to keep his oxygen saturation up high enough (partly due to the pain he was in because of teething) and both his heart rate and respiratory rates were elevated even as he slept. Karin and I are very well trained on what looks like something that can be treated and home and what constituted a trip to the hospital. We knew what we had to do and were quick to call 911 and get Liam the help he needed. Getting him into the car seat and getting him ready for transport made him more agitated and by the time he was put in the back of the ambulance he was a deep, deep, blue color. Scary, scary stuff; just in time for Halloween. That Liam sure does know how to celebrate a fake holiday. Little prankster, I'll give you a trick or treat.

We called the ICU unit on the way so they could call the E.R. and have us immediately transferred there. They know us there and are better equipped to deal with Liam's equipment and diagnosis. He was put on a very big, very fancy ventilator and quickly calmed down. His color returned to normal and within 5 minutes in true Liam fashion he fell asleep in the trauma room as if the whole event had simply bored him to sleep.

We are hashing out exactly what caused this but it doesn't look to be anything serious. When Liam catches a cold, this is what happens. When Liam catches Pneumonia, this is what happens. When Liam catches seasonal allergies, this is what happens. When Liam is perfectly happy and stable and some tiny little thing gets caught in his throat, THIS IS WHAT HAPPENS. It can be hard to explain to people how a five or six day stay in the Intensive Care Unit can be no big deal but for Karin and I it has become downright ordinary.

Cultures were drawn and sent off to the lab. Regardless of how Liam is doing (he is doing wonderfully right now. Calm, comfortable, and back to normal) we are stuck here until they can be absolutely sure that nothing will grow out. Its been over 24 hours now and nothing has grown yet but we have to give it at least 36 more. H1N1, RSV, Flu A, and Flu B swabs were all sent to the CDC but without a fever or a change in his secretions that diagnosis seems unlikely. We won't hear about those results for a day or two.

Liam is doing well and surprisingly so are his mother and I. We have dreaded our first visit back knowing it was inevitable but the anticipation, as it always does, proved to be worse than the event itself. It was almost nice to come into the hospital to be greeted by plenty of familiar and friendly faces. People who had already cared for Liam and were knowledgeable of not only his medical history but also how he behaves. It is very tiring to explain Liam's likes and dislikes to new nurses. What positions help him sleep, what his daily routine consists of and what will really piss him off. This kid's got a temper you do not want to mess with.

So we'll muddle through the next few days. Biding our time until real life can start again. Hours spent watching Law & Order reruns on the hospital TV and reading fluffy easy to read novels. Nothing you have to think about, thinking can be too much at times like this.

Tuesday, October 27, 2009

The Way He Was.

I'm tired. Very tired. Today was my first day back at work since Liam came home. A long day for sure. Way too tired to post something real so I'll leave you with one of my favorite pictures of Liam when he was only a few weeks old. This is during something called "kangaroo care" or skin-to-skin holding. A wonderful bonding time between mom and preemie. Beneficial for them both.

My little monkey.

Night all.

Sunday, October 25, 2009

Pictures? Why, of course I have pictures of my son.

Hello internets. Been too busy or tired post but I have taken a few pictures. It has been a great few days. Thursday was a wonderful day including a fantastic Neurological evaluation for Liam by his doctors from the Follow-Up Clinic. ( I'll get into it in a post dedicated to it but Liam has a chromosomal imbalance which has resulted in Miller Dieker Syndrome. His brain didn't complete its development and he will experience developmental delays for all of his life.) News that had The Wife and I happy enough to dance. I got a ton of things done around the house. Things that should have gotten done over the summer but need to get done before the winter. I ran into a dear old friend that I haven't seen in 12 years and had a great dinner hanging out with my parents. It was fun for the whole family.

Liam continues to do well except for a sore stomach all day today which made him quite irritable as well as effecting his respiratory function. When your bloated with gas your lungs can't expand as much. When your lungs can't expand enough your respiratory rate gets higher. When your respiratory rate gets higher your ventilator doesn't like it and beeps and beeps. Oh how I love the beeping. Anyway, he's a tough cookie and so a sore tummy isn't gonna keep my boy down long. We adjusted his meds to compensate and we'll talk to the pediatrician on Monday.

I realize now that while I have talked about Liam and his current issues so much that I never posted any pictures here of where he started. Let's fix that shall we. . .

That's him the morning after he was born. All 770grams (1lb 110z) of him. Looks a bit different at 18.5 pounds doesn't he?

Watched the movie Year One tonight. It was barely OK. The Biblical gimmicks were slightly funny but could have been much more clever. Fart jokes have their place and I guess somewhere there's people who find eating poo funny but I'm not one of them.

I am surprised by how funny the show Community has been. Consistently getting many more belly laughs from me than The Office or 30 Rock. Even Chevy Chase is funny on this show. That's saying something.

The E! Network has been showing Chasing Amy all weekend and it cracks me up how bad the ADR substitutions for the cuss words are in this.

The second volume of The Complete Sandman was better than the first. Can't wait for my email from the library that the 3rd and 4th are in. Palahnuik's new one Pygmy is a bit of a struggle. The first person narrator of a Chinese exchange student who doesn't know much English makes it hard to follow. I'll push through it though because the story has grabbed me. Reading Coraline to Liam and he is loving it.

With the belly issue today I wasn't able to take my usual Saturday Nap so its off to bed for me and hopefully all three of us will get a few hours. Night All.

Friday, October 23, 2009

But Feathers Drift.

I didn't get scared until I saw just how much blood it was. Big drops all over the top of the small table and a large clump leaves. The ground around the table was splattered in crimson dotted leaves. All but the deep spots were dried up but it was a hot day today and they could have dried pretty quickly. We had been walking around my Nan's yard for at least fifteen minutes by now but she hadn't yet come out to see my father and I. I hadn't walked around the front of the house to see if her car was there but it wasn't in the driveway around back of her corner lot.

My father noticed it first. He was so excited to show me the table he had placed in front of the toolshed that he wanted to give for my garage. "Shit, does that look like blood to you?" he said as I walked closer.

"I've never really seen blood this dried out but it sure looks like blood to me." I looked closer and closer at the table before inspecting the ground around its legs. There was more than I thought.

" I hope my Mom didn't cut herself. I'm gonna get my keys and head inside. Don't touch any of this stuff. Leave it all just the way it is now." He backed away and headed for the van. "Hopefully there's some coffee on." he called back but it sounded like he was just trying to keep me (and maybe a bit of himself) calm.

He ran inside and I looked for a trail of drops leading away from the table. Nothing. The drops seemed to come from straight up. No direction as if someone were swinging a cut hand. Perfect little circles of dark red. It just seemed so strange to see so much blood in one little spot but not anywhere else. I didn't want my father to know it but I was beginning to get very scared that something had happened here. The longer it took him to "get his coffee" the more afraid I became.

"Hey Eric, there is a pot of coffee in there if you want to grab a cup." Dad said calmly as he came out through the back sliding glass doors.

"Nan home?" I said in the most nonchalant voice I could muster.

"No, there's no one home but everything looks fine in there." He said looking at the ground as he came towards me. He stopped over a bowl on the ground and said "but now I'm seeing this here."

I walked towards the small cereal bowl on the ground and could see that it was filled with a red chunk of something and had some thick red liquid smeared allover its sides. "What the hell is that?" I said just before getting close enough to see that it was a meatball covered in marinara sauce. Dad's sister liked to feed the neighborhood animals. I suppose she meant it to be for the cats that lived on the block but it attracted all kinds of course.

"Something could have eaten that and climbed into that tree and shit it out all over there." he said but I think we both new this didn't look like any kind of animal waste we had ever seen. Marinara sauce or no. "I'm sure everything's fine. Let's unload the van." We opened the van and brought one heavy load to the bike shed in the corner of the yard. Not being able to help ourselves we wandered back over to the table to get to the bottom of this. "It doesn't make much sense for it to come from straight up. The drips on the sides of the table were long and thin. It was on all four sides. Surely unless someone was standing on the tabletop at the time it couldn't have come from someone cutting themselves.

"You know what? I think it was probably a hawk or something up in the top of the tree eating something. A bird, squirrel, anything really. There's been a peregrine falcon flying around here this summer." We were both craning our necks to look straight up to see the criss-cross of branches above us. "Now we just have to find some feathers around here and we'll know."

Made perfect sense to me so we started looking around for feathers but didn't find a one. I started to feel better. There had to be a reasonable explanation for this but you never could tell with Nan. She wasn't one to let you know if she was sick or in pain. Letting other people know, even the ones who helped care for her, would be an imposition. I walked round the table and between it and the tool shed when it hit me. There's blood everywhere on the ground except for under the roof overhang of the shed. It was then easy to tell that the blood had to come from higher than that. Nan is spry for her age but with two artificial knees and one artificial hip she's not climbing any trees. Even if they are titanium.

My mind set at ease we got back to work and finished the unloading of the van. We got to my house a little while later and started telling my wife what happened. My father was so excited to tell her since she is such a fan of true crime documentary TV. No CSI I for her but a steady diet of Forensic Files, The First 48, Cold Case Files, and American Justice, makes Karin a self-proclaimed crime scene evidence expert. When she heard about the long straight up and down drips on the side of the table she quickly exclaimed "That must have come from very high up, there's no way it had anything to do with Nan." Apparently it had cleared some guy of his wife's murder and Karin was adamant that even though we haven't yet seen her Nan was fine and not without a significant amount of blood.

"I still wish we had found some feather's so we could be sure." Dad said. He didn't look worried but there was something unfamiliar in his voice when he said it. And it wasn't until then that I realized why we didn't

"Well that's easy to explain," I said "blood will fall straight down of course . . ." It's not every day that I get to ease my father's worry by figuring something out before him. He's a pretty clever fellow.

". . . but feathers drift." I made a wavy motion with my hands implying feathers floating in a breeze.

"Well Shit. Why the hell didn't I think of that." He said with a smile.

We let my wife get back to washing the dishes as we spent the gorgeous day doing work on the outside of my house before winter comes. It turned out to be a really great day for me and the whole family but it started with a jolt of worry and concern. Fear mixed with intrigue and puzzlement. My Nan is fine of course but I didn't find that out until the evening. We still don't know exactly where the blood came from but we have a pretty good idea and I don't want to know the real explanation if it means that we're wrong.

Update: This story is how I started my thursday. I wrote it up that night to post but Blogger went down while I tried to post. I haven't had the time to post since and so here it is being posted on a saturday night.

Thursday, October 22, 2009

No Photos

No photos this time I'm afraid. Haven't taken many in the last few days. We've been a bit busy. Liam went to see his pediatrician yesterday and we found that he is now officially in a spot on the growth curve that correlates to his age! A huge milestone for any preemie. He weighs so much in fact that he has been put on a diet. 18.5 pounds! We've got some skin rash issues including him breaking out into hives this morning but its nothing a bit of ointment and cream can't get rid of.

Liam was visited today be his first friend aside from his mother and I. The first nurse Liam ever had came over to the house to hold him for a while. Caitlin was a huge part of Liam's first 5 months and as such has become a part of the family. She is welcome any time and we were sad to hear of her plans to move to San Diego next year. At least we'll have a place to stay when we take Liam out there to see the San Diego Zoo right?

Finished The Graveyard Book the other day and forgot to mention how much I enjoyed it. As I've said before it's a very fun read and by the last chapter I almost cried. ( I cry alot these days and I'm man enough to admit it. It has been an emotional year.) Although I loved the story of Bod and his childhood in the graveyard I was taken by the story of Silas, his guardian. I am sure that I am not alone in that opinion. I have read people reviewing the book calling for a sequel but I tend to think that the story is just about perfect as it is. It may even get me to read some more YA fiction and find out what else I've been missing out on in that. Because it is written for someone a bit younger doesn't mean the story doesn't have merit.

I'm also on to volume 2 of The Sandman and loving that. out of 11 volumes I don't think I'm far enough along to comment on the themes and plots of the series but I like what I've seen so far.

I sometimes find myself with too much to read and so start immersing myself into more than one book at a time. A book for reading in the morning and another that I read before bed for example. To that end I grabbed Chuck Palahniuk's newest novel Pygmy from the library today. I never read Fight Club but I hear this one is even better. I did read Rant and found it interesting but it took a while to warm up to Palahniuk's writing style in that one. I also thought that some of the more gruesome things put into his fiction are there simply to shock and titillate and not to further character or plot. Small sample size though and we'll see how I like this new one.

I almost picked up Infinite Jest at the library as well but I know that I'm just not ready for that yet. It's an enormous undertaking if I want to really do it right.

If you're not watching Bored to Death on HBO you are missing something great. While Silverman holds the lead well it's Zack Galifinakis an Ted Danson who just kill me on every episode. Ted's best role since Sam Malone that is for sure.

While googling Zack Galifianakis to figure out how to spell his name I found his show Between Two Ferns on This is some funny shit.

Liam just fell asleep and the ventilator noise is getting hypnotic. Time to get some shut eye. Night all.

Tuesday, October 20, 2009

17 Days

17 days. Yesterday marked the 17th day that Liam was home. Its the longest he's ever been out of a hospital as the last time he came home we were rushed back to the ICU on the 16th day. We celebrated as a family by spending the whole day in our pajamas. It is truly a remarkable thing to not have to change out of our pajamas to see our son. My parents came over in their jammies in the afternoon and my sister paid attention to the dress code when she came over to watch the patriots kick ass/ do some laundry. We got a whole bunch of chinese food delivered and spent the afternoon and early evening taking turns holding the boy and reading to him and chatting about him. It was a wonderful celebration of his homecoming.

Our nurse arrived at 11:00pm and The Wife and I got to sleep in the bed at the same time last night. Also an occasion to be celebrated. A busy day tomorrow for sure with a pediatricians appointment followed by his evaluation for early intervention (physical therapy/ occupational therapy / speech pathology ). Hopefully all three of us will be able to squeeze in a nap in the afternoon. We'll see.

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Alright, if you decide to come back and regularly read this blog you will eventually notice that I will link to a bunch of stuff that I find on I can't help it if the guy just continues to find the coolest stuff on the internet. Check out this amazing clip of a woman on Ukraine's Got Talent depicting the German invasion of of the Ukraine during WWII using sand and a lightbox. Using her hands and a whole bunch of sand this woman had the whole audience crying in just a few minutes. Simply amazing.

Like I said busy day tomorrow so its off to bed, or actually - the couch, for a few hours before trading places with The Wife who gets the first shift in the bed. Night all.
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Sunday, October 18, 2009

In which pizza is made and eaten.

I did a lot of work around the couch today. I didn't get much sleep (surprise) and had to get out of bed early so that The Wife could get to the doctor's office early. Her suspicions were correct and she has pink eye. Conjunctivitis as a result of a blocked tear duct. Not a viral or bacterial form and so no worry of passing it along to The Boy but still a royal pain in the ass. Who doesn't want to spend four hours in a walk-in clinic for a small tube of ointment. Anyway, I had some fun hanging out with Liam and we had a nice little morning of hanging out together. I read to him and he listened. He seems to like that. Well, he hasn't told me to stop yet so I'm assuming he likes it.

In the evening we had my mother over for dinner and I used the pizza stone I got for my birthday. I got some fresh dough at the bakery and decided to go a bit non-traditional for the first pizzas. My father roasted a whole chicken for dinner last night and only used half and so I put the other half to good use. Pictured above is the Chicken Alfredo Pizza of Alfredo sauce, chicken, thinly sliced red onion and mozzarella cheese. For the second I made a BBQ Chicken Pizza with BBQ Sauce, onion, chicken and both cheddar and Monterrey jack cheese. Both were delicious and I'm looking forward to next time where I'll try some more traditional pizza varieties.

I have really been enjoying reading aloud to Liam. I haven't read aloud since my public speaking class in college and it truly shows me what makes a good flowing piece of dialogue or description. I am learning about style and voice through this and will be reading aloud more and more of my books since the subject matter doesn't matter for Liam as long as I read in a soothing voice.

As I played around here on the laptop and listened to the rhythmic breaths of Liam's ventilator Ricky Gervais' Ghost Town was playing on HBO in the background. I must say I found myself watching it rather than doing what I originally planned to do. Afraid it was just another romantic comedy ( and actually when you get down to it - it was just another romantic comedy really) I liked it. Gervais kills me in pretty much all that he does and I am looking forward to seeing his new one. Even if I do have to wait until it comes out on HBO. I also fell asleep watching Hamlet 2 last night which cracked me up. That one I highly recommend.

2am. Time for some of The Boy's medicines and an attempt at a few hours of sleep. We'll see.

Saturday, October 17, 2009

In which its my Birthday.

Yep, its my birthday. The Wife let me stay in bed until about 11:00am which was nice since I didn't get into bed until about 4. The Boy slept through the night and was back to his old self today. I think the worst is over and we can stop being so worried about heading back to the hospital. I took a quick shower and then since we had a nurse Karin took me out for lunch for my birthday.

We swung by the library on our way home from the restaurant so that I could pick up the books I had requested be transferred to my local branch. I only needed to pick up one though because Karin had gotten the other one for me for my birthday.
I have only read American Gods by Neil Gaiman but I absolutely loved it. I have been reading his blog for a little while and have wanted to read the Sandman series for years but just never got around to it. Well, Karin got me the first volume of the complete Sandman books so I started that today. The other book I got was The Graveyard Book. I tend to get "stuck" on authors where I need to read everything I can by them. This has happened with Vonnegut, Heller, Mailer, and Chabon. Now its happening with Gaiman. Karin took a nap when we got home and since the nurse was staying for a few more hours I grabbed a cup of coffee and read the first half of The Graveyard Book. I have been reading about this book on his blog for so long that I feared it would never be able to live up to my expectations. It turns out there was nothing to fear at all. I don't read much YA fiction but am finding this book very entertaining and an overall fun read. I know that the material may be a bit dark for him but since its only about tone of voice for him I think I may start reading it to Liam tomorrow. I have a wonderful time reading books aloud to Liam as I try and come up with new voices for each character. I can already hear my versions of both Bod and Silas.

My Parents and Nan came over with dinner in the evening and we had birthday cake and they all visited with Liam. His illness prevented them from holding all week so they are chomping at the bit to get their hands on him. My mom got me a pizza stone as a gift and so the plan is to make dough in the morning and try my hand at some homemade pizza. Before he passed a few years ago my grandfather would make pizza from scratch every weekend and the whole family would come over on Sunday afternoons to eat and watch whatever sporting event was in season. His older brother owned a pizzeria when he was a kid and it became a true family tradition that has been sorely missed. I don't presume to think that I will be able to relive those days but I think having family around is very important for Liam and so I can at least try.

Liam's 8:00pm meds.

Friday, October 16, 2009

Where nothing really happens.

Nothing remarkable to report today which I guess is a good thing. Liam is definitely on the mend and actually let us hold him today. He stopped being so cranky that he would freak out at a simple touch and went back to his old snuggly self. A slight cough still comes out every now and then and his secretions are a little more than usual but his coloring is back to normal and he is behaving more like himself. We had a nurse today so I got to get a couple extra hours of sleep this morning before taking off to my own doctors appointment and then when I got back The Wife had a chance to go out and do some birthday shopping. Yup, my birthday is tomorrow.

A bit of a scare last night. As I was suctioning Liam I cracked the circuit (or breathing tube) coming out of his ventilator. I was ambu bagging him (manually breathing for him using the ambu bag you may have seen this type of thing on ER or some other hospital drama) and was stuck. Can't walk away to get help, can't put a new circuit onto the vent and leak test it with one hand. Stuck. Was able to call Karin loud enough that I woke her up and she was able to help but what if that happened to her while I was at work? She would be stuck bagging him for hours. I am terrified that we won't be able to get the nursing care we require before I go back to work. The nursing company has assured me that we will be fully staffed soon but until they train more nurses on how to take care of a kid with Liam's issues we are stuck doing it ourselves. We went 6 days with only two 8 hour shifts of help last week. Good thing we paid attention during our own training. Don't get me wrong, I love taking care of Liam. We spent the first 9 months of his life letting doctors and nurses do most of the care so I want nothing more than to be the caregiver for my boy but it is no easy task when even lifting him out of bed and sitting with him on your lap is a two person job. While I am back to work Karin is definitely going to need a well trained second pair of hands.

The library called and my books are in and so tomorrow I will finally start the Sandman series of comics that I have been wanting to read for a loong time.

This video has a ton of hits and you have all probably seen it before but this is a very, very cool cover of an enormously catchy tune. Beyonce's Single Ladies performed by Pomplamoose

The LA Times has printed a new Vonnegut story "Look at the Birdie" (from Maude Newton)

Karin got into facebook two weeks ago when prompted by our nurses in the hospital. They all wanted a way to keep in touch and know how Liam was doing. I have always said that I would never get a facebook page. I just never thought it was something I wanted to do. I find myself conflicted now. I am watching my wife reconnect with friends that she hasn't seen in almost ten years and I wonder who I could find out there. I'm not sure what I'm going to do yet but I think I just may go back on my word regarding facebook. ugh.

Thursday, October 15, 2009

Well, well, well and we were off to such a great start too. I haven't posted lately as things have just popped up. It was a great weekend. My In-Laws came up from NJ to spend some time with the boy. My Mother-In-Law cooked a wonderful meal (for my birthday) that included my parents and sister. Even though I wasn't the one cooking it was nice to entertain that many people in our new house. I had never had that many people over at once yet. We spent lots of time telling stories and hanging out with the Boy.

Sunday was the 2nd Annual Clam Alley Pottery ClamBake Extravaganza! at my father's pottery. Last year I was very, very involved in the planning and execution of this event and this year I was, of course, busy with other things. Since it would be way too many people there to bring Liam, Karin and I took turns getting over there for a little while each. It was fun to see family and friends that I haven't seen for a long time. The event was a success and he sold lots of pottery. Including the "Liam the Lion" pots (pictured below). After the event I was able to bring my Uncle Billy and Auntie Judy over to introduce them to Liam. They drove a long way to get here and it seemed lie the right time to start bringing the extended family over for a visit. They have no kids of their own and so the chance of bringing all sorts of strange germs over were slim. Although my Aunt is very gentle and tender I never thought of my Uncle as the nurturing type. I was pleasantly surprised by how well he took to Liam. They were the only people we have ever introduced to Liam that weren't phased by all the tubes and machinery. Approaching him the way they would have approached any baby. It was nice.

Monday was quiet and uneventful as holidays usually are and it wasn't until Tuesday night that anything remarkable happened.

Liam got sick.

I'll say it again for dramatic effect, Liam got sick.

One last time -- LIAM. GOT. SICK.

Now for most babies a cough and the sniffles are no big deal. A pain in the ass? Yes but a fact of life and not something that serious. Liam is a bit different. With Liam's lung issues a simple cough and excess secretions in his nose can ultimately lead to a lengthy hospital stay. We were a hair's breadth away from calling 911 to have the ambulance take us back to the hospital but my wife soothed him and got his oxygen saturations back to a somewhat normal level and we were able to stay home. This time of year it is safer to be able to stay home when he's sick rather then go to the hospital and catch something really bad. You may think that hospitals are clean sterile environments but truth be told hospitals are dirty, dirty places. Its where all the nasty drug-resistant germs live and where all the sick people carrying around nasty bugs go. Knowing that simply walking in the door would mean a stay of at least a week (cultures would need to be drawn and then we would have to wait at least 3 days for them to grow out) going back was the worst thing we could do.

We worked with our doctors over the phone and our nurses here in the house and I am happy to report that Liam is quickly on the mend. We will continue our "sick plan" protocols for at least three more days but his color is back, the cough has disappeared and the think junky stuff we were suctioning from his lungs and airway has returned to its normal consistency. We are very happy and proud of him. Sicknesses are going to come and go for Liam but with each one he beats he gets stronger to fight the next one off so we are glad this one didn't turn out to be a serious as it could have.

* * * *

I caught Regina Spektor's performance on SNL and loved it. I'm pretty sure that I listened to her newest album at least once a day the entire time we were in the Children's hospital. It will always make me think about the worst 3 1/2 months of my life. Track #12 is Liam's song, all about his hospital stay because remember breathing's just a rhythm. I hope people were able to see it because she is not as popular as she deserves to be.

I've been reading old Vonnegut essays and speeches lately but looking forward to getting back into some fiction. I have Gaiman's Sandman series being transferred from another branch to my local library and am very much looking forward to those coming in.

It's late and I'm tired. The boy is asleep for now so I better try to get some sleep. He needs a med and suction in about an hour and a half so a bit of a nap is in order. Till next time here are some more pictures from the past few days.

Some more Clam Alley Pottery

Auntie Judy holding Liam while Uncle Billy looks on.

Some of the "Liam the Lion" bowls.

Great Grampa Andy holds Liam

Sunday, October 11, 2009

Liam has decided that our sleep schedule just doesn't work for him. he would rather sleep all morning and nap for a while during prime time but from about 11:00pm to 4am is playtime. Boy is he excited to stay up all night long.

The In-Laws made it up for a visit today and will be staying for the Clam Alley Pots' (my father's pottery company) open house tomorrow. They had fun with Liam and overall we had a great day. The plan for the day included a walk to my Nan's house but after getting about 50 yards from the house Liam started showing some bad numbers on his oxymeter and his ventilator so we ran back to the house and did a quick trach change. We new it would happen sometime so karin and I were happy to get our first emergency trach change at home out of the way. It went very well and he has been much more comfortable and breathing much better since we finished it. Of course it freaked out my Mother-In-Law and Sister who were with us at the time. Its not a very pleasant procedure to watch.

My Mother-In-Law then cooked us all (Karin & I, my In-Laws, my Parents, and my Sister) a fantastic dinner of steak, potatoes, green beans, and summer squash. Delicious. It was meant to be my birthday dinner as I will be turning 32 this week. Liam finally settled down for a nap at about 6:30 after staying active all day long and I knew then that he would be up all night. None of us could bring ourselves to wake him up since he had had such a bad nights sleep last night.

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Check out this youtube video of the second largest aquarium tank in the world. Expand the view to full screen, let the whole video buffer so that it doesn't stall in the middle and enjoy. Watching this must be able to reduce your blood pressure by at least 10 points. (pretty sure I found this at a while ago but I can't remember.)

I really don't remember where I found this but it is very true. This absolutely is why you're fat.

Saturday, October 10, 2009

Karin and I thought that we would be getting a nurse today from 8am to 3pm so when she got me out of bed another hour early (about two hours after I went to bed) because she had a migraine I didn't really mind. I was sure that in a half hour or so the nurse would relieve me of my post and I could get a few more hours of sleep. 2 and a 1/2 hours later I realized that no nurse was coming and I would have to muscle through a long day. Karin felt much, much better when she did get up so it was worth it. I actually like the days without nurses because after 9 months in the hospital the last thing we want to do is watch another nurse care for our boy; but when nurses are here both karin and I can get a few hours of uninterrupted sleep.

Once she got up I headed over to the pottery to help my dad get set up for his open house/pottery sale. We spent most of the afternoon moving display shelves, pots, and bonsai trees before emptying the kiln of the newest batch of "Liam the Lion" bowls. They are small bowls decorated with lions along the outside and all proceeds from their sales will be donated to the March of Dimes to help other premature babies and their families. The bowls are obviously named for and dedicated to my son and hopefully we will sell out of the current stock and be able to donate close to $2500! I'll let you know how it goes.

Liam had another good day. He slept, he ate, he pooped and he snuggled with his mom, dad, and grampa. He's been getting more and more aware of himself and his surroundings since he came home. A few days ago he realized that he could control the hands at the end of his arms and that his hand fits quite nicely in his mouth. He has been having a great deal of fun chewing on his fingers and sleeves. It is a big milestone for a baby who had been sedated and in a medically induced coma for so much of his young life. His favorite stuffed animal continues to draw large smiles and reactions which is also new behavior. I can't tell you how proud of this boy I am.

It's getting late now and even though my "shift" doesn't end until 4am, I'm going to check Liam's diaper, feeding pump and ventilator before seeing if I can grap a nap on the couch next to his crib. Wish me luck.

Thursday, October 8, 2009

Home Now

Liam is home now. As of about twenty minutes ago its been 1 full week of time at home. In his 9 & 1/2 months of life he has been home a total of 23 days. Its strange to say because he's got so much more equipment and complications but its a bit easier this time around. He's safer with his trach and vent. We don't have to worry so much about his breathing anymore now that his airway is secure and his breathing is maintained with a ventilator.

Liam would sleep through the night if we let him. Secretions that build up in his trach need to be suctioned out every few hours so his mother and I take shifts. I stay up watching him until about 3:30am and then The Wife relieves me and she takes over. It works for now.

The hard part is the home nursing. Strangers in the house and helping with Liam's care for up to 12 hours a day can be more stressful and uncomfortable than I thought. We have spent the past 9 months watching nurses take care of our boy and now that he's home we do not like watching it continue. Sure the oxygen tanks, the suction rig, the ventilator and the feeding pump can be a lot to handle but Karin and I are able. We work hard making sure that we know everything we can about Liam's care and find it strange that so many nurses tell us that we are the exception in that way and not the rule. What parent wouldn't want to be involved in any and all aspects of their child's care?

Today's nurse just left after a very manageable and helpful 6 hour shift. As far as I know there will not be another until tomorrow morning but sometimes they just show up. As much as I don't like some strange person in the house it is helpful to have someone qualified come over so that Karin and I can do laundry, the dishes and other household chores. When there's no nurse nothing of that sort gets done. Although I must admit that the house has never been cleaner. Having so many people in and out has forced me to pick up after myself like I never have before.

In non-Liam news, well, there is no non-liam news yet. We watched Coraline the other night and I absolutely loved it. I am very sorry that I didn't see it in the theater in 3-d.

Well Liam just woke up from a very short nap. He's teething now and very cranky. I must attend to the boy because he is now the boss of me. When we were there we used to say "there are no spoiled kids in the NICU" Now that he's home I'll change it to "there are no spoiled kids attached to ventilators" whatever Liam wants, Liam gets and right now he wants to be held. Which is good because I want to hold him.