Updates on Nolan

Here’s a very short video of Nolan walking around in his cast. I’ve got another one I’ll add if I can get the upload to work, so check back.

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I haven’t managed to get many pictures posted, but there should be enough to convince you that Nolan is indeed growing up… and that he has a fabulous smile. He’s a charmer, that one is.

Click through to the gallery to see the rest of the pictures. I promise more will come before September 14th. Can you believe it’s been almost a year already?

Nolan says Happy Mothers’ Day to all the moms and grandmoms and great-grandmoms and, heck, all the dads and aunts and uncles and cousins and friends and everyone else who is involved in raising children! But, today, most especially there is lots of love and appreciation for the moms out there…

Tomorrow Nolan will be 8 months old, and you can see from the picture that he weighed in at 9lb, 1.5oz last week at his weekly weigh-in. Nolan is working hard at getting big and strong. He’s also getting more and more interactive, using his hands and making lots of noises. Kara and Ronan have been doing lots of physical therapy with him and he’s really doing great with it. The physical therapy is stuff like having him do pushups on your chest and getting him to turn his head all the way to both sides and that sort of thing — mostly aimed at getting him to use both sides equally and gain strength and flexibility in general. A bit of catchup from spending so long in a bed when the other kids were out playing…

Apparently Nolan went to the Farmers’ Market yesterday and loved it. He was facing out in his carrier and Kara said he was kicking and talking and generally getting very excited. As he gets bigger and stronger, he’ll get to go out into open spaces with people even more. Undoubtedly followed by a bit of quiet time with the fuzzy friends, like this.

The auction on May 4th was a huge success! Immense thanks go out to all of those who participated by organizing (an unimaginably major commitment!), donating, volunteering or attending. I don’t know exactly how much was raised, but I do know they definitely surpassed their goal. I think more details may be posted on the auction website soon for those who would like to know more.

Yep, Nolan the Bean had another birthday on Saturday. I had pictures all ready to upload but haven’t had a chance to post until now. He’s been out of the womb (OOW) for seven months, but I suppose we need to start getting used to referring to him as his “adjusted” age, based on what his birthday would have been if he were a term baby (mid-December). That makes him four months, adjusted… Gotta love it, just in time for tax season we start referring to Nolan like he’s a tax line item!

That whole adjusted age thang doesn’t really matter so much to all of us, who have been following Nolan’s saga for the last seven months, but it makes for fewer strange looks when someone at the grocery store asks how old Nolan is (”Oh, my eight pound baby? He’s seven months old.” and then you gotta explain the whole saga while your ice cream melts), and also reminds us that Nolan’s development won’t follow “normal” development guidelines — sometimes he’ll be ahead of his adjusted age, sometimes he’ll be behind his age… But, hey, we’re just thrilled Nolan has graced us with his presence!

Anyhow, on the subject of developmental milestones, Super Nolan (shout out to Alice!) is doing a pretty good job of holding his head up (better even than the picture shows) and he’s really moving his head around to check things out. He’s really interested in his hands: he spends a fair amount of time just watching his hands move, and he’s also working more and more on reaching for things, touching things, and generally beginning to use his hands.

He weighs 8+ pounds now, continuing the slow but steady progress that we all know and love. He’s still on supplemental tube feedings. He’s also starting to “talk” a lot at times.

I wanted to let all of you Nolans fans out there know that a subset of your number has been working tirelessly to set up a benefit auction for Nolan. More information is available at http://friendsofnolan.com, but here’s the teaser: these folks really have worked tirelessly to set up a great event — hundreds of pieces of hand-crafted artwork from artists near and far, with fabulous food and drinks, live music and a great auctioneer, and a silent auction before the live auction to get everyone warmed up. They’ve arranged for all donations to be tax-deductible, and the funds will be held for Nolan’s care and expenses, so you’ll be supporting a great cause (near and dear to all our hearts!) while you’re having a great time. You may get a great piece from your favorite artist, or you may discover a new favorite artist — since many of these donations are from Kara and Ronan’s colleagues, you know there will be lots of great work in there either way! You’ll also get a chance to meet some of those other Nolan fans whose names you’ve seen over the last months in the “recent love” column. All this fun will be had on Friday, May 4th, so get the date on your calendar (just a couple of weeks away!) and get the details, including pictures of some of the pieces to be auctioned, at the website…

More cute pictures in the gallery — they look best if you click through to the full picture and then use “next” to look at them all… The thumbnails clip parts of the picture so if you don’t look at the full picture you’ll miss, for example, the great look on Ronan’s face as he says hi to Nolan… Check it out!

Hope to see you all at the auction…
-Maria

Nolan has discovered that he has hands, and that he can (kind of) use them, and also that they are interesting to chew on. He’s fascinated by ceiling fans and his parents’ voices. He’s growing (over 7 pounds now!) and, of course, he’s cute as a bean. But that’s no surprise, now, is it?

Nolan has a pretty cute smile and he shares it pretty often, especially when Mom plays games with him. Or just talks to him. Love that Mom action. Really, though, who wouldn’t?

Nolan still loves to be held and patted (or thumped) on the butt. The advent of hands-in-mouth last week seems to have made the pacifier a little bit less crucial for him. Overall, there’s not a ton of news, just a happy, growing baby. We’ve got more pictures in the gallery, which the Haigler-Davis family will especially want to check out.

And now, Nolan has asked me to let each of you know that this April 1st he wants you to stop foolin’ around and join him in spending a couple of hours in front of the television cheering the Tar Heels as they beat Tennessee. (Also he wants you to hold aside Tuesday night for the final victory of the women’s basketball season. Go Heels!)

Good thing that he learned to use those hands for cheering just in time for the championship!

What’s another surgery, in the grander scheme of life? That seems to be Nolan’s thinking, or dreaming in this case. He’s moved on already, and judging from this pose he held for a while tonight while sleeping, he’s planning for the future. What, exactly? Perhaps his first Superman costume? Leading a rally on the Mall in DC? Shaking his fist at The Man? Letting Sambuka lick his hand? We’ll never know what he was dreaming about, but it was darn cute.

There was some indecision this afternoon about whether to leave Nolan on the ventilator overnight, but he decided to end the discussion by extubating himself. I’m sure that was a bit of a crisis in the moment it happened, but he seemed to be doing pretty well off the ventilator and on the nasal canula this evening when I was there (though he’s not quite back at his pre-surgery respiratory state). He was in a bit of pain this afternoon and seemed to be waking up distressed periodically this evening, but that seems like a normal reaction to surgery to me (that’s a certified non-medical opinion, there). He’s on some pain meds, but they don’t have him totally socked out.

At this point, I gather they wait for him to have a bowel movement and then will begin feeding him again. I guess you don’t call it oral feeding if it’s via the new gastrostomy tube (which comes out of his stomach), but it’s not i.v. nutrition, either. Anyhow, Kara and I supposed that they would slowly build him up to his former level of feeds, but the process and timing of that is not clear… like so many things in the NICU. We’ll know when it happens, if not sooner.

So that’s the scoop. Thanks for safeguarding Nolan through surgery with your love, prayers, thoughts, and support. The last message, from Sar, took us over the six hundred comment mark! Wow, what an amazing community of friends Nolan has.  Ya’ll are totally fab!
-Maria

So many cute pictures — where to start?

Nolan is fighting sleep these days.  He spends a long time in that twilight phase where he seems on the edge of a coma, then pops awake and interacts for a few minutes before drooping back towards zzzz-ville for a few minutes before….  you get the picture.  So here he is, fighting the full closure of the eyes. 

He’s also getting better and better at holding on to his pacifier by sucking.  The other day, I saw him make an impressive save: the pacifier was about to fall out of his mouth, with the handle side about to win the battle of gravity with the little bit that was still in his mouth, but he made a sudden slurp and the pacifier popped right back into place!  So, good progress on the sucking strength front.

He’s loving his mobile, and he has very active hands, especially when he’s watching the mobile.  He’s working on grabbing things, albeit at a very clumsy stage. 

He’s developed a bit of a preference for looking left, so they’re working on keeping interesting things to his right so he’ll start to overcome that preference.  I think this is a pretty common occurrence with babies in nurseries, where they spend a lot of time facing the same direction in a crib.  I think it’s also pretty easy to overcome with a focused effort.

Nolan’s hearing test was great, and his latest eye exam showed the eyes improving (blood vessels regressing).

And just to lighten up your day, I wanted to share a picture of the clown who I caught impersonating Ronan last weekend.  What’s the consensus out there about earliest clown memories: good or bad? 

If you click through to the bigger picture, you can see the mobile which Nolan likes so much.  It gets in the way of pictures, except when it makes the picture…

More pictures in the photo gallery.  Enjoy!

-Maria

It’s true, Nolan had his four month birthday yesterday, and he looks great!  He weighed in at 2100 grams (4 lb, 10 oz) – that’s four times his birth weight! He’s sleeping in a crib and the copious medical machinery has largely been replaced by real baby toys like mobiles and mirrors. 

With the ventilator gone and Nolan more stable, it’s not a multi-person task to pick him up.  When he’s upset, Kara can pick him up and see if he wants to nurse.  He can usually be transferred to someone else without setting off alarms, so Ronan and Kara can both hold him in one visit.  This is a huge and welcome change from a month ago!

In other good news, Nolan has been moved to a new pod, where not only is there a window, but he is next to it.  That makes it a lot easier to take pictures to share.  In an attempt to remedy my commented-upon slackness, I’ve posted some more pictures in the gallery.  I have a number to sort through from the last month, so if saucy Caroline wants to help me get them uploaded, I stand a chance of making it through the backlog.

Now that Nolan is past the 2 kilo milestone, the docs have started talking about scheduling the surgery to close his stoma from the colonostomy that was performed when he was four weeks old.  Right now, they’re saying it will happen next week.

All in all, we can see pretty clear and miraculous progress happening, even as we consider the hurdles yet to be faced.  Yesterday, Ronan and I met the parents of a girl who was born on January 3rd, a few weeks younger than Nolan was at birth and weighing just a hair less than he did.  It was nice to be able to show them the progress Nolan has made from a similar place, and hope that it made a positive outcome feel more possible for them.  Please keep their baby in your thoughts and prayers.  It was just a few months ago that our family was struggling with many of the same problems, and your love and prayers made all the difference for us and Nolan.  It is truly a blessing to have such wonderful friends.

-Maria

Nolan wishes all of his friends a very merry, happy, and healthy Christmas!  (The NICU is pretty Christmas-oriented, so he hasn’t yet been introduced to Hanukkah, Kwanzaa, or any other winter celebrations… you’ll have to wait until next year for his glad tidings for other holidays.)

Nolan’s Christmas present to his family (besides his beautiful self) was to imbibe mother’s milk straight from the source for the first time, on the first try.  As many of you may have experienced personally, that’s not a given even for term babies, and it’s definitely not a given for a baby who has had a tube in his mouth preventing sucking for the first three months of his life.  Nolan gave it the old NICU try yesterday, and successfully got the milk into his mouth and down the correct pipe.  Yay for knowing when to breath and when to swallow!

Nolan’s uncle Shannon is visiting for Christmas — another celebration!  The great hat in the picture was made by aunt Amy and gifted to Nolan on her recent visit.

Love to all of Nolan’s friends out there…

-Maria

I’ve finally sorted through all the pictures I took while borrowing Satsuki’s camera, and the pics from Nolan’s 2 month birthday are in the gallery now.

I love this picture of Nolan sleeping because you can see how much chub he’s putting on. He’s got enough fat on his body now that he looks almost like any infant sleeping peacefully (with a vent tube down his throat and an iv in his hand). Fat means he’s getting enough calories that he can store some of them, which means he’s growing!

He is still a pretty wee thing, of course, as you can see from this kangaroo picture from his birthday. Just a bigger wee thing than he was a couple of months ago.

Little bean is working hard on becoming a medium bean, on his way to being a big bean…

There are more new pictures in the gallery if you just can’t get enough.   They’re in the “second month” album, at the end.