Can you fall asleep with the hiccups?

Liam has finally fallen asleep for the night. It's 1:44am. He has decided that 2am suits him as a bedtime and we are powerless to stop it. Try as we may to keep him up through the day to tire him out, he simply refuses to settle into bed early. Tonight I hope he sleeps well. He should.

He had another seizure tonight. This one was a doozy. He settled quickly after his diastat but the dose doesn't guarantee sleep the way it used too. His post seizure hiccups kept him up for a while. But he's asleep now. Good thing too as we are due in the pediatricians office for a visit and another round of immunizations bright and early at 8:30am. I've got the portable ventilator all set up and ready for a quick exit in the morning. We're getting pretty good at the travel thing. Me? I'm going to need a nap tomorrow for sure. Luckily I have the day off from work, since today was originally scheduled for a trip to the eye doctor in Boston for a fairly complex procedure. With the night Liam had I'm glad we'll only have to drive a few minutes away.

Don't get me wrong the kid is doing fine. His numbers and lung sounds are great but the seizures take a lot out of him and he'll probably be a bit cranky in the morning. Liam, like his daddy, has never been a morning person. I better get myself to bed soon too.

We had a good weekend. Liam got to spend a lot of time with his Meme and Grampa (my parents) while Karin and I got some work done around the house. The second floor is shaping up nicely and I only wish I had this weekend off as well to really finish it up. My father and I also spent most of Sunday working on building a shelving system so that I can organize the rest of the junk we have accumulated over the years. Its surprising how many christmas decorations I already own given that this is the first year we've really decorated for christmas. We had some major stress that involved one of Liam's meds and the morons who run its only distribution pharmacy and he had a few strong seizures as we work on adjusting his dose of that med. Par for the course in Liam's world. He handles it all better than I do. We finished it all off by cheating on our diets and ordering chinese food and watching the end of the football game. (How does a team with a quarterback who is NOT ALLOWED TO THROW THE FOOTBALL end up in the AFC Championship game???) Although I had some plans with a friend that I wasn't able to make, it was still a very good weekend.

The slow rhythm of Liam's vent is starting to put me to sleep now so I will end here. Hope everyone had a nice Martin Luther King Day, and I hope that you give to the Red Cross as much as you can spare. The people of Haiti need it more than you do.

Beers and Bedtimes

As promised over the weekend here are the pictures of Liam's Lager. Brewed by my brother and aged 153 days or the same amount of time that Liam stayed in the NICU.

Just wanted to get the pictures up and make it a quick post tonight. Liam's new medication doses have wreaked havoc on his, and our, sleep schedules. The side effect induced insomnia had Liam falling asleep last night at about 10:30 this morning. No sleep in this house for about 20 hours. Dr.'s have been called and doses have been re-adjusted and hopefully we can all get back to resting when we should soon. Just a matter of Liam's body adjusting to the new meds. Until then, he's in charge of his sleep schedule and we just have to accommodate.

Night nurse tonight and so its off to sleep I go. Like I said, quick one tonight.

A couple of photos and a quick update.

Nothing major to report from the homestead today. Liam had good days and slept through the night again. He's a bit cranky because he finally got his H1N1 vaccine yesterday (whew...) and he had another seizure this afternoon but just a bit of a blip and nothing worth worrying too much about. He has otherwise been active and alert and simply wonderful to be around.

He had a nice long visit with his Meme (My Mom) yesterday and another long visit from his Grampa (my Dad) today. Its a very good thing that Liam loves to be held.

We have been weaning his oxygen veeerrrry slooowly. He's down to 1liter of flow and could probably go even lower as he is satting at 100% most of the time. We have decided on a long term plan for the wean because of the severity of this year's flu season. Had we come home in May or April and facing the summer where less bugs spread we would be much more aggressive. Let's get through the winter before we make any major changes. He deserves to get some rest and grow stronger before we ask any more of him.

I hope everyone got a chance to thank a veteran today. Thank you, men and women of the military for your service.


I had to work today but only for a half day. Came home and met with a service care coordinator for Liam and then spent the rest of the afternoon holding my boy and reading to him. We played games and sang songs. There is no better way to spend an afternoon.

Karin and I are making breakthroughs and major decisions with the home nursing situation. It is a strange thing to have a staff of nurses in and out of your small house and as we have grown more comfortable we have grown more assertive. It is important that everyone in the house remembers who is in charge of all decisions...Mom is. Sometimes she even lets me think that I had a part in the process. We have made some room layout decisions that will give us more of a private space that Liam can come with us where we can escape. To run away from the stream of visitors and "staff" -- Physical therapy, occupational therapy, speech pathology, Nurses, medical equipment representative, oxygen delivery man, Nursing supervisors. More people have come through the house in the last month than we have had over to any apartment we've ever lived in. The second floor will become our little oasis. An island from the stress and chaos. A comfort zone. I can't wait to get started this weekend.


Got a bunch of cool links but not nearly enough energy to put a list together now. Now, we try and sleep.

Night all.

You'll get a hang of the routine in time.

Night nurse = sleep.

Night all.

As usual I'm tired. I don't expect to post much other than a quick update. Liam had a couple of small seizures today. Neither lasting longer than a minute and he recovered from both of them on his own and without having to knock him out with meds. We will adjust his daily med doses with the neurologist tomorrow and hope that we can go longer next time between events. Unfortunately, seizures are just another thing that Liam's mom and I have to manage. He will always have seizures but they can be well managed with meds. Problem is we don't know that we need to adjust his meds until he shows us -- by having a seizure. We are very lucky in both the frequency and severity of these events. I don't mean to sound flippant or nonchalant about this but its just one more thing. Another item on our checklist of things to watch out for.

One of the other items on that list is Liam's G-tube and Mic-Key button which he has had for about 7 months. The button is a small tube with a closure that is a few inches from his belly button that pushes into his stomach and is held in place by a liquid filled balloon. Picture the air nozzle on a beach ball just sticking out of my kid's abdomen. It attaches his feeding tube and to be honest, makes late night feeding very easy. "Just set the feeding pump and walk away." That's right just like Ron Popeil says -- "SET IT AND FORGET IT!" Well tonight I saw a slight rise in his heart rate for a minute or two and knew something was irritating him but not enough to wake him. Sure enough, the balloon holding his Mic-key button in had sprung a leak and he popped it out. It couldn't have been out long because there wasn't much formula on the blanket so I popped the old one back in to hold the tract and got a fresh button. New one went in fine and Liam didn't even wake up! A bit of half digested formula aside neither of us were worse for wear and we didn't even wake up mom. He is more bothered by a diaper change than he is when I push a big piece of plastic into his gut. This kid cracks me up.

He's been sleeping through the night for us lately now that he can roll himself over to make himself comfortable so I think I'm going to hit the sack. "Sleep when the baby sleeps" they say but I doubt that they had the not so quiet sound of a ventilator by their head. Or pulse oximeters, or feeding pumps...the noise never.stops.

One quick note - in Liam's first days I was writing a Carepage, a blog set up by the hospital. It was a wonderful way to give updates to our friends and families on his early progress and our first days as parents. As Liam got older and we spent more and more time at the hospital I slowed and eventually stopped posting. I wanted more freedom in design and functions and it was a closed invitation only site. Some of the pieces posted there I am still very proud of, and some of the comments left were very eloquent and meaningful to me. I would like to post some of them here and add some reflections on them given my new experiences and knowledge. They will be compiled into a certain category and will provide some back story to Liam's long journey. I still haven't yet decided one thing. Liam's first birthday is the end of next month. It might be cool to post them on the year anniversary of their original posts. Each day that I posted there in 2009 I will post here in 2010. Might be fun no? Or I'll just throw them up willy nilly whenever I feel like it. I'm not what you would call a patient man and so I'm betting on the latter but I think the idea is a good one.

Night all.

Blogging to resume after good night's rest.

Home nurse tonight. We delayed it for a full day to have some private, quiet, family time but our nursing care schedule kicks back in tonight. We'll have a nurse from 11:00pm to 7am and then another one tomorrow morning starting at 8am. Then it we'll have the weekend to our selves again. Its been over a week since either of us have had a nice chunk of sleep and so rather than stay up and write I am off to bed.

Night All.

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.