$107,704.84

That is the hospital bill for SOME of Nolan's surgery. That does not include the PICU or step-down floor stay. He has $5,000 worth of dissolvable hardware in his noggin'. Who says you can't put a price on love?

Busy Babies

Reagan and Nolan have had a busy few days. Grammy was around to help out and Daddy wanted us out of the house so he could get to building the wine cellar in peace so we took to the road.

On Friday, my Mom and I took the kids to the West Side Market. It was cold. Really cold, but we managed. It was good to see some of the vendors we haven't seen in so long. They were beginning to wonder what happened to us. We also did a trial run to Sokolowski's University Inn because she had a party there the next night and wasn't sure about how to get there. The line was out the door for lunch and I wasn't making the babies wait, so we headed to a local place on the way home. The chicken noodle soup was excellent. The kids loved it too! They are becoming such good eaters, almost too good in that they don't want to drink their formula or eat "baby" food.

Saturday, I had some errands to run, so my mom offered to stay in the car with the kids while I ran in and out of places. Again getting us out of the house and leaving Bill to pound and saw away. We had soup/sandwich combo at Max & Erma's for lunch. Again the kids ate more table food then "baby" food.

Saturday night we went to Carrie Cerino's with friends to celebrate Nolan's speedy recovery. The kids continue to do so well in restaurants. They can be occupied with food now so that helps the cause. We always get compliments from strangers on how well behaved they are. We are very proud of that and hope it continues. It is my vision that Reagan and Nolan will be dining at Lola for their 5th birthday. If their manners continue, that goal will be easily attainable.

A few photos from the last couple of days:

Like mother, like daughter. Reagan loves to read. She opens the book and "talks" to it. Note the leg, it is always up when she reads!

Now that Nolan is on the move, nothing is safe. He has given his exersaucer a very thorough exam.

Nolan & Reagan enjoying some leftover spaghetti from Carrie Cerino's

Visiting Grammy's work. They don't have many "matching" clothes, but we just loved these sweaters and I was able to find them at Once Upon A Child, the local resale shop for a great bargain. Since they were both there, I figured it was an omen and I had to buy them ;-)

Tribe fans will understand the pain I felt when we drove past THE JAKE last week and the sign was down. Progressive Field should adorn the entrance by opening day, which is just two months away!

Daddy, Can You Spare A Dimebag?

Ok, since it will be a couple of more weeks until Nolan goes to see the neuro and plastic surgeons, I'm going to keep you entertained with the stupidity that is our life.

This afternoon, my mom and I packed up the kids and met Bill and his mom at the Winking Lizard for dinner. We left the restaurant at the same time and it should have taken Bill an extra 15 minutes or so to drop his mom off and come home to help with the kids bedtime ritual of bottle, PJ's, floor playtime (they are CRAWLING! It happened overnight, I swear!), a story, and then into their sleeping sacks for lights out. Almost an hour goes by and no Bill. The phone rings. It is Bill, or as he said, Hello, I am a suspected drug dealer!!!! WTF??????

A little back story..... Bill's mom lives in a not-so-nice part of town. She has lived there a long time and was there long before it went south. We generally go to her neighborhood to pick her up for dinner, holidays, etc otherwise that is not a place I take the kids to just hang out. Bill is currently driving my (sniff, sniff) Orange (Cleveland Browns Orange) Land Rover. We have picked her up many times in that vehicle over the past 5 years.

As Bill is leaving her house tonight and is about to get on the freeway, the 5-0 come rolling up behind him. License and registration, please sir. What did I do? Sir, just stay in the vehicle.......

Turns out our vehicle was pinned for suspicious activity related to the sale of drugs in the neighborhood since it has been seen coming and going from the townhouse complex that Bill's mom lives in.

Glad to see the cities finest would think an alleged drug dealer would drive a freakin' ORANGE Land Rover and be dropping a little lady at her front door.

Wonder what will happen the next time I go over there in the Audi. Better have my papers in order!

(Bill Comments: it was actually more of suspicion of buying, not selling. I assume that they are targeting folks who get off the freeway, swoop into the neighborhood, and hop back on. A car that doesn't belong in the hood is easier to notice, and tag for a quick license and reg check. A satisfactory reason was good enoughfor them, and no third degree).

The kids are getting better at picking up finger foods and getting them into their mouths, so we let them try a french fry tonight.... MMMMM

Cabin Fever

Yes, I know I live in the "Snow Belt" and the cold and snow were bound to happen, but this year it is harder. If I want to go anywhere during the day, I not only have get myself dressed like I'm going on extended deep sea diving, I have two other people to do the same to. Two squirmy, squiggly, little people (that weigh close to 20 lbs EACH) who HATE mittens.

I'm fairly sure the kids don't have cabin fever. Probably going to a different room in the house is like going on a vacation for them. They get in the kitchen sink for a bath and it is like sitting pool side in Cabo. No, they don't have cabin fever.

I do.

We used to get out every day, but I just can't drag them out in this. Do you know how hard it is to push a double stroller through slush? I'm considering taking them to the Cleveland Clinic just to walk around. You park inside in a garage (no slush) and you can walk for miles without having to go outside. But there is the germ factor to consider. It is, afterall, a hospital!

I think tomorrow we will check out our basement. There is enough sawdust on the floor from the construction this past weekend that we can pretend we are at the O-K corral.

We don't have follow-ups at the Clinic for a couple of weeks, but I figure I'll post updates on the kids here if you are interested in checking in.

Here are a couple of photos of the kids looking outside at the snow and the squirrels playing in the backyard.

Nolan's incision is healing nicely and the hair is coming in quicker than I imagined it would!

Pseudostrabismus

Yes, another medical term we'd never heard of until today. In this case, it is pretty good news.

Nolan has Pseudostrabismus, meaning he really does not have cross-eyes, just the appearance of them (or as Bill calls it "Lucy Liu Syndrome.") That is right, it is all an illusion. (Gee, why can't that be the case for my thighs!)

They did find that he has astigmatism though and will need to be rechecked in 4 months. He could possibly need glasses if he doesn't grow out of it. How in the heck do you keep glasses on a 12 month old?!?!?


Ready to hit the road for the eye doc:


(Bill adds:)
Note Nolan's cap-he can pretend that he's a tailgunner in a B-17, just like the old man did back in the day (except the old man was able to freely sit in the back of the station wagon-like millions of other children who suffered no ill effects-without intervention from the children's services nazi's and dellusional politicians who go way out of their way to protect the weakest parts of the gene pool from themselves, but I digress). However, Nolan's ride is more like a B-52, than a B-17,

Naturally, I was happy with Nolan's outcome as well. I had previously subscribed to this "Lucy Liu" line of thinking about his eyes, until we found out about Nolan's craniosynestosis, and that eye issues are common. What a relief that there wasn't anything serious! Since both eyes have the same level of astigmatism, I am hoping that he will grow out of it. After some checking, I found that 3 in 10 kids have this, to some varying degree. Since his horizontal plane is off (based on what the doc was noting, -1.75 +2.0 at 90 deg), perhaps he'll shake it.

It was such great news, that we were able to celebrate with our friends John and Jan at one of our favorite joints, Momocho in the OC*. For those who have not had the pleasure of going there, this is not your normal run for the border. One of my favotrite dishes is the "chilaquiles" (smoked trout and crab layered in tortillas with a fried egg on top) The margaritas are outrageous (my faves are the pomegranite, hibiscus, and cucumber), and the the guac is to die for. Shelley has been craving it for weeks. We got our favorites pineapple/habeneros, blue cheese/garlic, goat cheese/chile. We assume that they are Nolan's as well.

It's great to get Nolan and Reagan out and about again. Between the surgery and the non-stop work on the house this fall, we've been a bit remiss in the babies' fine dining adventures. While we did get to Carrie Cerinos before the Holidays, we have yet to try Bar Cento, and we haven't been able to go see Chef Matt (or maybe Michael) at Lolita.

*Ohio City

They're Back!

Wow! It was as close to a normal day as you can get with two 8-month olds! Grammy came over this afternoon and helped out with baths and played with the kids while I cleaned Reagan's closet. I actually dusted and vacuumed the downstairs while they napped.in.their.own.cribs.

Here are a couple of photos from bath time. The sun was coming in the kitchen window and hitting Reagan just perfectly. By the time Nolan got out of the water, the sun shifted, plus he wouldn't sit still anyway so his are "action shots." As you can see from the pics, Nolan is in love with the melonballer. Don't worry, it doesn't reside in the kitchen anymore, it is now a "toy."

More Positive Steps

Nolan slept in his crib until 6am! He did have trouble about an hour after going down for the night, but that started weeks before his surgery..... he'd just drift off and then cry. Bill did a good job of getting him settled after about 30 minutes. At 6a he was ready to get up and from what I was hearing on the monitor I could tell it was starting to interrupt Reagan's sleep so Nolan and I got up and watched TV for a bit and he drifted back off until Reagan woke up.


Reagan LOVED her breakfast this morning. I mixed a little maple syrup in with multi-gran cereal and bananas. She finished Nolan's off. Now that is a switch. Nolan is back to eating well too, had to be the codeine.


Nolan is playing more and more. I'm sure he is getting strength back. We have to remember this poor kid had most of the blood in his body transfused (2 units) and he received platelets after the surgery so he has a lot to rebound from. Judging from what other "cranio" parents have experienced post-op, what we are going through is completely normal. Most of them said total normalcy returned about 4 weeks post-op, so we are half-way there. We also have to be careful of his play since his soft spot is larger now. Dr. Papay offered a soft-sided helmet to help protect his head a bit, but we think it will cause more harm than good. Our house is pretty childproof and we never leave them alone on the floor so we will just be more vigilant.

Bill and I are so grateful for these two little miracles in our lives. And as my friend Nancy, a Grandma of twin girls, said, "If he were a singleton you would only have half the trouble right now -- but half the fun too." SO true. I couldn't imagine just getting half the smiles and kisses I get every day!

A funny side note. As you know, I LOVE my jacuzzi tub. Last night I get all settled in and get the water to just my liking. I go to turn off the faucet, turn the handle all the way to the right and it is still running.....full blast in the off position!!!! I can't even take a bath in peace, you just have to laugh!

Crib, For A Bit

Nolan slept in his crib from 8p-2a! It is a start. I gave him some tylenol and I tried to get him back to sleep, but that was not going to happen. He actually woke Reagan up (who I think is cutting a tooth, so she was restless anyway) and she would not go back to sleep either. Everyone ended up in bed together. All 7 of us. Yes, all the cats were there too! Nolan's eye appointment is going to last 4 hours or longer on Thursday. God, give me strength.

Follow-Up

We saw the cranial-facial plastic surgeon this afternoon. He is very happy with the way Nolan is healing and how the surgery went. He said on a scale of 1 to 10, he puts Nolan's outcome at a 9.5. He still has a lot of swelling around his eyes and forward and that can take months to completely disappear.

Nolan still will not sleep in his crib, but we keep trying every night. Hopefully one of these nights it will click. He is playing a little more without having to have me by his side, so that is a step in the right direction. We do have to watch him carefully since his soft spot is much larger now.

We are taking him off the codeine completely. It is really messing with his stomach and I think it is causing more harm than good at this point. Dr. Papay said when he does this surgery in third world countries (he goes on lots of these surgical trips) they only ever give the kids regular tylenol. I can't imagine that because without morphine I would not have made it through the first two days, let alone Nolan!

We spoke with the doctor about Nolan's eye. I'm sure you've noticed that sometimes one eye appears to cross. It is an effect of the metopic craniosynostosis causing pressure on the optic nerve. The surgery did not (and should not have) corrected the problem so we need to explore this now. Best case would be a patch over the strong eye; worst case would be surgery. We have an appointment on Thursday. Poor kid, as if he has not been through enough already. Then there is the bracial cleft cyst on his neck that needs removed when he hits a year old, but that is in the very back of my mind at the moment.

Miss Reagan is starting to get on all 4's and hop forward. Still no attempt at a crawl, but then again I think she may skip crawling and go straight to running! Notice that mischievous smirk! We are going to have our hands full with her :-)

Where oh Where Has My Nolan Gone?

It is getting harder and harder to see Nolan being so out of character. He was always so happy-go-lucky. My easy baby. He would get into his crib, pull his blanket up, and close his eyes.... and stay that way for 10-12 hours. Now he whines if I'm not holding him. He refuses to sleep in his crib. It is in arms or nothing. He has a couple of hours a day where I see glimpses of my Nolan. I know he has been through so much in a the past 9 days. I know he is probably still feeling pain. It is just so hard to see him this way. Reagan has decided that now is a good time to reinstitute her high pitch squeal/scream that upsets Nolan even more. I feel guilty that Reagan isn't getting as much Mommy time as she should be. If I didn't have the jacuzzi bathtub to relax in for an hour a couple of nights a week, I'm sure you'd be reading about me losing my marbles! Calgon, take me away.

Tired

Too tired to come up with a snarky title..... Things are finally catching up to us. All the stress of everything that happened coupled with lack of sleep hit Bill and I hard today. Luckily, we had leftovers from our Chinese take-out dinner with Grandpa Fred and Nonny Linda last night and my mom is bringing over some sloppy joe's.

Nolan is VERY needy. He won't let Mommy be out of his sight for more than a few minutes. He cries a lot. Of course we don't know if it pain or just being scared or just being an 8 month old. He cried so rarely before so this is hard for us to hear.

Judging by the picture, you'd never know Nolan is also having trouble sleeping. He wants to sleep on Mommy (where he is in the photo) or in our bed, not his crib. He starts off in his crib, but wakes after about an hour and cries and cries. He has learned to hold out his arms for you to pick him up so when you go in to see what is wrong, there he is, arms outstretched, tears streaming down the face. Kind of hard to resist at the moment with that snaking scar across his head staring at you. We'll have some work (and sleepless nights) to do in a week or so, once we know he is beyond pain. I can imagine he must have some killer headaches after having his head opened up and then put back together with plates and screws! If he would just stop spitting out his Tylenol III things might be better.

Working on Normal

Our first night home was fairly uneventful.

Nolan must have some pain because he cries more than usual, which was almost never and wants to be held a lot. He also did not want to sleep in his crib. Honestly, I wanted him close to me anyway so we set up a bed for him between Bill and I. He slept well for the most part, but around 5:30am was trying to find a comfortable spot so maybe the stitches are bugging him. The incision has a lot of bruising today. A good sign of healing going on, but we'll have to watch when he needs his meds.

Even though Nolan was released with "No Restrictions." Daddy and I leery of letting him go down on the floor and play. We are just so afraid he will bumps heads with Reagan or a toy and hurt himself. He is not happy about this since we have him confined to a bumbo chair and he wants out. I guess we'll have to let him out sometime, like when he is 2! Gee, where is the bubble wrap when you need it! LOL

Reagan slept all night, in her bed, with no "issues." Hopefully she is getting past the worst of the bug. She doesn't want to eat too much, but that has been the case lately. She recently learned the word "blech" and makes a face like we are feeding her worms.

Reagan's latest thing is her tongue. It is very interesting to her. It can roll, do raspberries, blow spit, and stick out all the time. Kind of fits her personality, I'd say.

It was nice to sit down as a family last night and eat dinner. A couple of days ago a co-worker of my mom's made us lasagna, bruschetta, fruit, cookies, and banana bread so we had that last night. I also took the banana bread to the hospital for breakfast, along with the shortbread cookies Jan made. Much better than the pan of fluffy "egg product" they were serving in the cafeteria. I do admit to having them with my guilty pleasure, an iced vanilla coffee from McDonalds.

It is bath time for Nolan, time to wash off the hospital ick.

.....And All Is Right With The World

One For The Road

We are waiting on our ride......Paula is coming to pick us up since Miss Reagan had a very rough night and Bill is calling the doctor this morning for her. Sigh.
Nolan is watching the backyardigans and is ready to blow this pop stand!

There's No Place Like......

HOME! We are busting out of here today! Gwyneth, from neurosurgery, was by already this AM and gave us the pain med prescription and gave Nolan a once over and declared him ready to go. Plastic surgery needs to clear him, but when they took the drain out last night, he said he was fine with him going home. Everyone on the neurosurgery and plastics teams have been so kind and good with Nolan. Nolan (and Mommy ) rested in spurts last night. He would have probably slept longer if they hadn't come in to take his blood pressure and temp. every few hours. I hope Reagan & Daddy had a restful night. We are packed and ready, although Daddy will need to bring another backpack for the toys we've accumulated over the past two days. They say we will be out of here between 10am-noon, so the next update will be from home!

9 O'Clock and All's Well

After all he has been through, Nolan is still smiling and giggling!The swelling will take upwards of two weeks to be completely gone, but as long as Nolan can see all is right in his world. He has a crib full of toys, but right now he is currently swinging his monkey around by its tail. His Cookie Monster made an appearance today and he was very happy to see him.

As Daddy said in the previous post, things are a bit tougher now that Nolan is no longer in the morphine haze he was kept in for 4 days. He wants to be active.

About 7:30p they removed the drain and that was not pleasant for the little guy, but he calmed down in minutes while we watched a little Harry Potter. (I brought all of them to watch and I am exactly 56 minutes and 48 seconds into the FIRST one! What was I thinking! LOL )

Now we've got Reagan to worry about. She is under the weather. Running a slight temp. and having stomach flu issues. UGH She did the projectile vomit for me last night that landed her in the bathtub just as she was ready for bed and tonight it was the other end for Daddy. I know Reagan loves to get a bath, but this is crazy!! I'm nervous about bringing Nolan home and potentially exposing him to this, but there is not much we can do except use lots of anti-bacterial wipes and soap.

Bill said he'd like to go sit outside and have a drink tonight since it so (unseasonably) warm here. I wish I could join him. We get one more warm day before the cold front comes through, maybe he and I will get to do that tomorrow while both are kids are in their room, in their own cribs snoozing for the night! Yes, they have mentioned the "H" word. HOME. Possibly tomorrow. Tomorrow would have been my Dad's 64th birthday so it would be very apropos for Nolan to come home on his Grandpap's birthday. After all he is Nolan's biggest angel.

Whatchu lookin' at?

(posted by Bill)

Last night was a little difficult, but only from the standpoint that Nolan is starting to become very active! He is kicking, and pulling on things, and is only sleeping in spurts. Most importantly, there are now two little slits under puffy eyelids, that have the hint of blue shining through. Nolan is now able to see, and everything is interesting again. Hopefully, the drain in his neck is removed today (as well as the IV in his foot) before our young, budding medical professional (I'm hoping for teleradiologist-those guys really haul in the coin) removes them himself. The swelling should continue to go away as well.

Dr. Lucciano, the neurosurgeon, stopped in this a.m., and I was happy to see him. He is still extremely pleased with how Nolan is doing. He thinks that, underneath the swelling, Nolan now more closely resembles Reagan.

We're hoping that he will be able go home in the next couple of days.

More Of A Lateral Move.....

...but a step closer to home!

We are out of the PICU and on a "clean" floor, meaning no kids with RSV or the like are allowed on this floor. It is a step-down unit on the other side of the PICU. Nolan made a great first impression by pulling out his own IV in his wrist. Guess it was time for it to go! There is one more in his foot and the drain in his incision, but that is it.

Aunty Kathy, Uncle John, and Aunt Jan happened by at just the right time and were a big help in getting Nolan and Mommy moved. Daddy and Grammy showed up, and Nolan reached out and latched onto daddy as soon as he heard his voice. He also started a little chuckling and giggling, which means normality continues to creep back.

I'm going back home to stay with Reagan, as daddy stays with our little guy tonight.

Movin' On Down!

Nolan's night was fairly uneventful. He is propped up more at the head of the bed to help with swelling so this allowed me some room to sleep next to Nolan. It was so good to feel his hands playing with my hair and reaching for me. I can't explain how much I miss holding him. Again, I am so lucky that he is a twin because I get my baby fix every 24 hours. Most of the other parents in here don't have that luxury. Nolan was agitated this morning. I think he is having gas pains caused by the morphine. Since he can't tell me if that is what it is, I'm not taking any chances that he is in pain. He got more morphine and is resting comfortably. I've got some apple juice to give him when he wakes and maybe that will help him get things moving. We are supposed to be moving out of the PICU today to the step-down floor. That means Nolan can get more of this monitoring equipment off of him and possible another IV line can go. He was really pulling at them when he was upset. The swelling..... ah, the swelling. They keep telling me that the peak is 48-72 hours so we are right there. It was very bad overnight, but it seems to be a bit better. Hopefully we have turned the corner. The eyes being swelled shut is so frustrating for him. Here is a pic from this morning. The drain needs to remain in place another day. They want the output at 1/2 ounce and his was 1.5 ounces for the day. It has slowed down considerably so I'm thinking we will hit that mark. As for me, I actually got sleep in spurts. Nolan woke every two hours or so for milk, meds, or labs and I don't feel too bad. As long as the doctors are happy with Nolan's progress than Mommy is happy. Daddy and Reagan were having some play time this morning when I called. Reagan was spinning around in her activity center (aka "command center" since it looks like she is at the helm of the Battlestar Galactica). If we move early enough in the day she may get to see Nolan.

The Saturday Evening Post

Mommy's Back.......

On the Nolan front..... We are still in the PICU. Everyone was saying we would probably move today, but that is not going to happen. Nolan was weaned off his morphine drip earlier and onto Tylenol w/codeine, but that didn't work out. He was pretty upset this afternoon and it is the first time we saw real tears from him during all of this so he got a dose of morphine. I will not let my boy be in pain.

His swelling is up considerably this afternoon. It was very upsetting for me to walk in and see him today. They told me that it is possible that his swelling could get so bad that his eyelids flip inside out. It also causes him trouble breathing when he tries to eat. Think about being all stuffed up with a cold and not being able to breath out of your mouth. No fun. I know in a few days it will go down, but it is really hard to see him this way.

A bit of irony for Browns fans: The two rooms across the hall from us in the PICU are occupied by Braylon and Brady!


Miss Reagan had a good morning with Mommy. We ran to the store to stock up on beverages and snacks so we can just keep a stash in the car and when Daddy and I rotate shifts we can take stuff to the room.

We also stopped to get she and Nolan some new pants. She is growing up and out so fast we can't keep her in pants.

It was very weird for me to only have Reagan with me. While it may be back breaking to lug two babies around, they are so much fun that I don't care. We were, however, able to get in and out of the store faster since we didn't get stopped by so many people and have to answer the eternal question "Are they identical?"

Reagan "talked" to Nolan's picture this morning over plums, bananas, and oats. She is still looking at his highchair, wondering where he is. I brought a pair of her PJ's for Nolan to smell today. He grabbed them and held them up to his face for a while. I'm sure he misses her. I know I miss them being together terribly.

.

For those of you that have been on the receiving end of one of Reagan's glares, you know this face well.

For those of you that haven't..... be afraid, be very afraid!

Beans, Beans, the Magical

(posted by Bill) …wha? Sorry, wrong beans, sir. Since Nolan is still sleeping peacefully today, I thought that I would fire off a rant in defense of those poor souls who are subjugated to drink the horrid dreck that serves as coffee here at the Clinic. Trust me, I am as far from being a coffee snob as you can get. I mainly purchase whatever is on sale (e.g., Maxwell House) for consumption at home, but certainly enjoy freshly ground and brewed, high-quality coffee, especially from a great place such as City Roast, which always compliments a trip to WSM*. Additionally, I always have an after dinner coffee at Momocho. Chef Eric features Guatemalan (or is it Honduran? Juan Valdez weeps.) beans, but adds a dash of Vietnamese cinnamon, and a ½ tsp. of raw/brown sugar. For someone who has always taken their coffee unadulterated, I find this coffee divine. Anyway, my choices here are horrid. Some awful “branded” coffee in the “international cafe” (don’t get me started on that- just ‘cuz Micky D’s spread across the globe like the bird flu, or helped bring down the Berlin Wall, doesn’t make it international ) that consistently tastes as if the grounds are used twice per pot, and Tarbucks. When will these “Sandinistas” learn that the beans should come out of the roaster before they burn? Sadly, this was the lesser of evils, so I tried fixing it by using Chef Eric’s trick. The cup took as much (regular) cinnamon, and raw sugar as I put in a pot at home, before drinkable. How these dedicated healthcare professionals work under such a strain is beyond me. Grrr. Mommy’s here to take care of Nolan, so I’ll put away my spleen now. *West Side Market

Promising Morning

(posted by Bill) You can’t tell by looking at his swollen face (“it’s not personal...it’s strictly business”), but our little guy is recovering nicely. I sat in on doctor’s rounds this morning (and I didn’t even stay at a Holiday Inn Express last night-trust me), and the report was great. They’ve stopped the morphine drip, but before moving him over to Tylenol III, they will continue the morphine for a while PRN (I think that TLA* is Latin for “GEEZ that hurts! Gimme somethin’ quick!”). He had a couple more bottles of formula at midnight, and then more this morning. All input/output is good, so they removed the IV fluid line. They won't remove the drain today, but the small amount of fluid coming out is clearer. Our friend Rick wisely recommended that Nolan be pretty heavily medicated for its removal, as it hurts like all get out (that “PRN” thing will probably come in handy). For those who really would like to see how he looks today, here’s a link (parents, set your v-chip on heavy stun). Please keep in mind that he is sleeping peacefully, more cognizant of my presence, and able to grip things, such as my hand, his blanket, or monkey. As we speak, his one hand is in the air, with his fingers rythmically twitching to the music. We’re waiting for word of his release to general population. *TLA- three letter acronym. The irony kills me ;-)

Like "Seinfeld", a lot about Nothing

(posted by Bill) Things are going so much better for Nolan tonight. It’s not pretty, due to all the swelling, but to me, he is a lot more peaceful than when I saw him yesterday. He seems to be resting more along the lines of his normal routine. No, I’m not implying that the kids are put into a morphine-induced trance every night, but as most of our friends know, both he and Reagan have had excellent 12-13 hour sleep patterns (much to the envy of our other child-bearing friends) since they were 12 weeks old (so don’t go starting any nasty rumors, pal). His hands aren’t quite as swollen, so he can close then a little, and his arms are bent into a more natural sleep position. He can almost clutch his blanket. He does moan once in a while, and I try and talk or read to him. I’m sure it’s very difficult for him not being able to see, due to the swelling. We had some bonding tonight, watching a movie (well, since eyes are swollen shut, he listened with rapt, albeit somnambulant fascination). I brought Battlestar Galactica: Razor, and I’m sure he found it very compelling, but I assured him that he is not a Cylon, despite the red dot from his pulse-Ox monitor glowing through his toe. When Nolan was a little restless, daddy read to him. Since Nolan has an interest in food (he eats a lot of it), I read him parts of Ruhlman’s Elements of Cooking. He appreciates the witticisms as much as daddy, and agrees with Ruhlman’s observation that veal [stock] is pretty blah on its own (veal is about the only thing both Nolan and his sister Reagan don’t like so far, in their palate of culinary experiences to date. If you saw the pureed, paste-colored stuff that came out of that jar of organic baby food, you’d turn your nose to it as well, or demand some crab and hollandaise, or at least some espagnole). Nolan is finally back on formula, and hoovers down the little trial-sized bottles of Enfamil as if he was kicking back shots of Schwarz Haus. Additionally, I started reading Levitin’s This is Your Brain on Music , a study of why music resonates so much with us. It was recommended to me by my friend Ian, who is a gifted musician and club d.j. par excellence. We spent many years in the Club Wars together, and Ian suggested that it might provide some meaning for my own rhythm-driven psyche. Both Nolan and Reagan seem to have an affinity for music, which I want to encourage. When the kids initially came home, we found a place where you can get lullaby renditions of artists, so the kids got regular doses of U2, Metallica, No Doubt, The Ramones, and Nirvana as newborns (these are also playng non-stop for Nolan at the hospital, along with some Cocteau Twins, Enya, and accoustic Foo Fighters). In addition, the kids are exposed to an eclectic mix of other music, though they seem to get heavy exposure to Foo Fighters and Duran Duran, and plenty of ska. As you can see, daddy has much more time on his hands to be creative (smart-alecky?) with Nolan than Mommy did. Naturally, our little guy is so much better along on his recovery at this point, and daddy also has the benefit of a decent night’s rest. Hopefully, mommy is getting hers tonight. She is absolutely exhausted, and deserves some uninterrupted sleep. As our friend Kay pointed out, a parental scrip for Atavan or Xanax would be in order, included along with all the meds for Nolan. I’m sure that Reagan will cooperate, and will be a little (though maybe angry-looking) angel.

Changing of the Guard

(posted by Bill)
Grammy Judy, Reagan, and I got here about 2p, and we let Grammy sit with Nolan for a while. It took me a second to get used to how Nolan looked. I was totally ok with the closure pictures Shelley posted earlier, as I initially expected a zigzag stitch akin to the southern end of a north-bound Singer. I was more pleased with the wavy, more natural incision. I was not quite used to the amount of swelling, however, even though I knew would happen. It was a bit of a shock (I thought, “Why is Christina Ricci sleeping in Nolan’s bed?”).

Our friend Kay spent time with me, after Shelley went to have some more mommy-time with Reagan and get some rest. We watched the little guy stir a little bit, as they took a blood sample, but they also gave him his Tylenol. He’s been doing so well, that they’ve cut his morphine drip in half. At 5p, I fed him 4oz of Enfamil, which was his first real food! Not quite a beef-cheek pierogi, or a chilaquile, but I’m sure it was just fine. At shift change, our night PICU nurse Stephanie figured he was hungry, so we let him chug down THREE bottles, and that took less than 10 minutes. He just finshed, had his after-dinner paci, and is drifting back off.

Mommy was just putting Reagan to bed, and then had to take care of a small emergency. It appears that Boxster, our middle kitty, spent a “day in the big city”. The back door was open for a little while this morning, and she took the opportunity to make a brief sojourn. This was her first jail break in 11 years, and couldn’t have come at a worse time. She was found curled under the smoker, after Shelley followed the paw prints in the snow (don’t they teach you to wade up-stream in E and E school?). She’s now inside, warm and wolfing down crunchies.

While Nolan drifts off, I'm having a bite (Subway veggie on honey oat with a side of McD's trans fat sticks-the Enfamil is starting to look pretty good).

Food, Glorious...... Glucose Water!?!?!?!?

Nolan is beginning to get some of the tangle of wires removed. The nose piece for the oxygen came off and along with that went the tape that was itching his cheeks. Also removed was a tube from the opposite end. For all the men out there, it was quick and painless and Nolan didn't even flinch. Three IV's and one drain to go. The moment I dreaded has arrived though. His eyes are swollen shut. It is SO pitiful. This can last for a couple of days and then the bruising will begin indicating that healing is taking place. He also got to enjoy 2 ozs of glucose water. This did not cut if for my boy that drinks 28 ozs of formula and eats oatmeal, fruit, veggies, and a main dinner dish everyday. In an hour he will get 2 more ounces. He needs to hold this down for several hours before moving on to formula. It is a start. He is back to sleep and enjoying a bottle in his dreams; his little lips haven't stopped sucking. I guess hope of giving up the paci anytime soon have been dashed. Daddy, Reagan, and Grammy are on their way to the hospital. Reagan will not visit today, but we will hang out in the lobby while Grammy gets to visit and then Bill will take over for a shift and I am going home to play with my girl, take a bath and rest up. Tomorrow we may be evicted out of the PICU so I want to be rested up for that. I want to take a second to thank you all for the comments you have left here, the email we have received, the phone calls, and all the prayers and thoughts that have been sent our way. It is a comfort to think of friends and family around the world (yep, Nolan has international friends) thinking good thoughts for our little buddy. We are so lucky.

Home Front

(post by Bill)

This morning, All is Quiet on the Eastlake Front. The normal routine at home is in place as much as it can be, given the circumstances. On Fridays, I work from home, so I’m involved in the kids’ activities. I got Reagan up, fed her, and am letting her get in some energy-burning play time, and a little TV. She does not have any interest in assisting in daddy’s work, as she finds SpongeBob Squarepants and the Backyardigans much more stimulating than either RFID or the .NET Framework. Hopefully, this will keep her from missing her “little” brother (subject to interpretation, though technically correct, as Reagan is one minute older). I put Nolan’s sleeping bag in her crib, and she was clutching it instead of her blanket when I checked on her last night. While only eight months old, I’m sure both twins realize that the other is “missing” at some level. Reagan was looking toward Nolan’s crib, expecting him to be chatting away as usual, and expected him to show up in his highchair at breakfast. Hopefully, they will get to visit soon, when Nolan gets moved to a regular room. Here’s a temporary pic of Reagan form this morning off my phone camera (until I can get a better one off the real camera card using a reader). As many of you know, Reagan can exhibit a very stern look when it comes to her expressions. Although a very sweet, happy baby, she is known for her occasional scowl (with shaking fist) that will stop people in her tracks. I was happy to catch “Baby Krushchev” in an action pose (I swear I will post a happy picture as well!).

All Reports Look Good

Things happen early in the PICU. The neurosurgery, cranial-facial, and anesthesiology teams have been by already this morning and it is not even 7am! They all are VERY happy with Nolan's progress. They removed his bandages completely (a little shock for mommy to see for the first time, but I did research before so I knew what I was going to see) and they have turned off his oxygen feed completely. Hopefully that tube can come out soon and he can start on some clear liquids today. The drain will stay in another day or two and he will continue to be in the PICU, until the output is less than 10cc's. whatever that means! They did shave a line of his hair, but I'm sure it will be growing back quickly. Someone from the OR team was nice enough to save the clipping for me. After all it was his first haircut. Pictures (not for the faint of heart) http://www.shutterfly.com/lightbox/view.sfly?fid=ae08b4ed80efff4b9a16dcf07a6807f9#1325563985631

5am and all is well

Nolan has been resting pretty well since about midnight with his fingers sticking out of his favorite blankie. His morphine drip kicked in and all his issues with the IV line setting off alarms were resolved, meaning he could get some sleep without being bothered too much. He stirs every so often and itches his face (a side effect of the morphine.) He is much more swollen, from the surgery and also from the IV fluids. His stats are all looking good and his fever (typical after surgery) has come down. The drain seems to be having less work to do since the platelets went it so he must be clotting better now. They are going to come by this morning to remove his head dressing and hopefully he can start on clear liquids and maybe remove one of his IV's--he has one in each hand, one in the foot and one in the neck. I have been dipping his paci in water since his mouth was so dry he couldn't suck. That is kind of a joke since the dressing is mostly off now anyway. He looks a little like the pope with his hat just resting on his head. As for Mommy getting any sleep...... have you tried to sleep on a pad thrown over a window sill? Yeah, not happening. Especially when the cold air is blowing in right up against your back. Nolan's bed looked awful comfy and there was plenty of room at the foot of it, so I decided to give it a shot. I got in horizontally at the foot and rested my feet on a chair. Must have worked since I snoozed for a couple of hours. The nurse told me she came in during that time and thought I looked pretty uncomfortable, but I never stirred so she just left me. As tired as I am, you would think I could have crashed out on that window sill, but I guess not! A mom from my multiples group that works in the PICU stopped in last night to do some paperwork and sat with Nolan while I made a bathroom run and got some juice. It is extremely dry in here so I am just so thirsty. I can't imagine how thirsty my little man is. Note to Bill: Bring something to drink for yourself so you don't have to pay hospital prices for it! Bill said Reagan was extremely happy to see him last night, but she was very tired. She had a busy day playing with Grammy, Paula, Mandy, and Connie. He said he read her bedtime stories (well, actually the same story twice, but they were both so tired neither of them cared!) and she was out. I really miss her and can't wait to see her this afternoon. Bill is going to take a shift with Nolan so I can go home and rest. I hate to leave him, but I need some time with my girl and a good nights rest so I can be ready to take care of Nolan when he moves to the regular floor in a day or two. I hear those rooms have a pull out bed type thing. Cha-Ching! I am so thankful that we had company during the time Nolan was in surgery. Grandpa Fred was with us for just about all of it and several friends, Joey, John, and Amy dropped by at different times. I am so grateful for that. It really helped make the time go faster, although the last 2 hours were just hell for me. When we got the call that surgery was over I felt like it was the first time I took a breath in hours. I'm going to have some of the corned beef John brought us yesterday for breakfast now!

4:45 pm

We been with Nolan for about 2 hours. He is heavily medicated and cries on and off. It is very pitiful and hard to hear since he rarely cries anyway. Walking in and seeing him covered in tubes takes your breath away, but when you look around the PICU and see things much worse......

He has lots of tubes and drains that will be in place for several days.

The neurosurgeon came by and said he and the cranial facial plastic surgeon were very happy with the results.

We can expect his eyes to swell shut for a couple of days.

The dressing on his head maybe be removed tomorrow.

That is all I know for now.

here is Nolan and his monkey (who has his own nametag)

DONE!

We are done! Everything went well. He is in the PICU and we are on the way to see him in a minute. Dr. Papay said he did excellent and he even took his breathing tube out since he was doing so well. THANK YOU THANK YOU THANK YOU Clearly Nolan was in excellent hands and prayers were answered!

1:10 Update

Patient doing well, still working. gosh, this is getting old...... John R. dropped by with lunch from Mr. Brisket. Bill's friend Joey stopped by and sat with us for a couple of hours, and Amy D. is here now. Having company has been great to take our mind off of things. I hope the next update will be that I am getting to see Nolan in a couple of minutes.

OR Update 11:56A

Still working, everything going well.

10:38am

Update from OR: Everything going well.

Thursday 8:20am

We got to the hospital at 5:40am and got checked right in..... and then waited.....and waited. Nolan played for a while and then took a snooze and woke up about 5 minutes before they came in to give him something to relax him! He got very groggy after that and then Mommy got her gown on so we could go into the OR.

About 7:50a Mommy walked Nolan into the OR and he got the mask on and drifted off to sleep. He was chatting with the mask on as he nodded off and that made Mommy cry.

Nolan's monkey is in his crib and waiting for him to come out of surgery so he will see a familar "face" as soon as he wakes up. (We wanted to bring cookie monster as well, but he met up with some unexpected trouble yesterday and is taking a spin in the washing machine!)

They have a pager system here so we should get updates via the pager once major portions of the surgery are complete. The neurosurgeon said to plan on all morning before hearing from him...... so we wait.

As I was just getting ready to post this we got our first update....@ 8:50am they had all the IV lines in and the surgery was starting.

Grandpa Fred just got here so that will help make the time go faster. It is so nice of him to spend his birthday here at the hospital with us :-)

About Nolan's Surgery

Surgery is at 6am Thursday. I'll try to update here as often as I can. Please say a prayer for all of us and the doctors!