Updates on Nolan

This is just a quick reminder, in case you’re like me and time slips right by you and oh, is it May already?

Friends of Nolan will be gathering from all around on Friday at the Durham Armory for a very festive auction.  There are literally hundreds of pieces of art waiting to be auctioned off, and even if you don’t bid on anything, there’s much fun to be had with music, food and drink, a real live auctioneer whocantalkrealfast, lots of amazing art to view, and other friends-of-Nolan to meet.

Hope we’ll see you there…

-Maria

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 passed his two months at home mark with flying colors. He is now over eight pounds, at least two inches longer than when we first came home and flirting with the best of them. He tracks, reaches, is beginning to grab and has a lot to say though the words are a bit garbled at this point; Sometimes I am pretty sure he is using some foul language or perhaps engaging in his own version of the “dirty dozen”, he must’ve gotton that from his fathers side of the family…We are loving having him home, the fact that I get to snuggle with him all day is so amazing. Ronan is working a lot in his studio and teaching several classes, generally being the breadwinner, as well as being at home whenever he can to hang out with us.
We still are not taking Nolan out in crowded places as he is still very suseptible to respiratory and intestinal bugs both of which would likely put him back in the hospital. The statistic is that 40% of premies end up back in the hospital their first year out, the smaller and earlier they were increases the likelyhood they will be in that 40%. We hope to debut him sometime this summer.
The biggest news for this posting is the upcoming fundraiser/auction. Many of you have given time, work, donations, love and energy to this event which we appreciate and are overwhelmed by (in a good way). If you don’t know about this event go to www.friendsofnolan.com to check out the details. It will be held May 4th at 6:30 at the Durham Armory. There will be a silent and live auction, food, music and friends. Ronan and I are planning on attending and hope to see some of you wonderful folks there. Thank you to everyone who has helped with the fundraiser!
Check out the gallery for the latest photos. I guess I should say the latest uploaded photos as there are so many new ones taken every day. Take care all. Kara, Ronan and Nolan

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!

Well, here I was concerned that everyone had given up on us and stopped checking the blog because I’ve been so lame at keeping it updated, but you’ve all gone and shown me that you’re far more determined than that, as obviously a number of you have already read Kara’s update.

Since Kara has given you the update, I’ll just share some pictures in celebration of Nolan’s Six Month Birthday. Wow, six months ago it was hot September, and now it’s hot March (didn’t anyone tell the weatherman that 80 degrees is a bit much for early spring?). Six months ago, Nolan got impatient and joined us a good bit earlier than was advisable, weighing just a bit more than a bottle of soda. Now he’s about 3 kg — almost six times more than he weighed back then. And look at that smile, would ya?

A week or so ago, Nolan got a button in place of the tube that was coming out of his stomach. Basically, this is just a flap (like a valve on a beach ball) that can be closed over his stoma, or opened to attach to the feeding tubing. He previously had a length of tube (maybe a foot long) that came out of his stoma and ended at a cap. They were waiting for him to be a certain size before they made the switch. Said switch came just in time, too, because the old tubing was starting to leak and causing lots of problems in the night with the continuous feeds (imagine slowly dripping milk into your baby’s bed all night). The new button was apparently tender for a few days, and I gather that the tubing that goes with it is supposed to be cleaned every three hours when in use (ie, all night) or it clogs, but overall the button is a good thing because it’s forward progress. It means Nolan is growing and moving along the path the doctors want him to. And, when not in use, it is less obtrusive and less likely to get tangled up in blankets and clothes (though, truthfully, the tubing was not nearly as “in the way” as I would have expected).

Nolan’s aunt Amy and uncle Shannon gave him a small gift that has been a big help — this pacifier. The dog is attached to the pacifier and helps hold the pacifier in his mouth (basically a prop). You’ll see the dog featured in many pictures because Nolan pretty much always has it with him. The hat was made by Nolan’s cousin Logan. It’s been fun to see what things Nolan has completely grown out of (like tiny hats) and what he has grown into, that it once seemed would never fit him. He’s still pretty little in the grander scheme of babyhood, but he sure seems big to us!

There are a few more pictures in the gallery — click through and check them out. I’ll post more as I get them, though I’ve discovered that the lighting at Kara and Ronan’s house is no better than at the hospital, so I’ve mostly got blurry pictures to share right now.

Happy birthday, Nolan!

-Maria

Yesterday was one month exactly from the day Nolan came home. We celebrated the day by walking in the woods, watching the Heels become ACC champs and getting visited by nurse Tara whose best friend magically moved into the house next door to ours! It was a good day.
Nolan continues to do well. He has gained slowly but steadily, last Tuesday he weighed in at 6 lb 9.5 oz and is now 47cm long (compared to 28cm when he was born). He does pretty well sleeping at night, if we didn’t have to get up to change out his feedings we would be getting close to normal rest! One of the (very) few advantages to being in the NICU so long is they get the babies on a schedule for you… We are making slow progress on getting him on all oral feedings, on good days he is at about 50/50, he is still on continuous feeding at night. We don’t feel in a hurry to get him off the pump since it is an easy way to get him good nutrition and accomplish the main goal of GROWTH. He doesn’t mind the pump and it can be taken anywhere like this morning when we took the dogs for a walk, imaginge walking, sleeping and eating all at the same time!
Nolan is also making progress developementally. With lots of encouragement from all his family he is learning there are cool things to see if you turn your head right and does so voluntarily now. He still favours his left and seems to be working towards being a southpaw but things are evening out. He seems to be focusing on objects at greater distances and doesn’t get “stuck” on an object to his left as often. He makes good eye contact with us and smiles more and more often which just melts us on the spot. He has also invented the fast paced, big action game of “Got your Lip”. We generally play early in the morning after a diaper change and nursing session. It involves lip grabbing, noisy encouragement and tickly kisses. It is a lot of fun for us as it seems like his first real interactive time and is maybe a glimpse at a sense of humour.
Thanks again to all for your support, prayers and words of encouragement (and food and clothes and diapers and cards and time and energy…!) We will try to keep everyone up to date, it is not so often that I have more than one hand free these days. I have to go, I hear the bean calling for MILK! with love, Kara (and Ronan and Nolan)

…a lot bit late, here’s the update…

Nolan is doing great, and life on Windsor Circle is beginning to take on the rhythm we had hoped for. A few stats to start: Nolan now weighs 6 lb, 4 oz and is 18 inches long. He’s doing better and better with breastfeeding — nursing more, longer, and stronger — though he is still needing a significant amount of supplementation. It looks like progress there will be slow but steady. Nolan’s only truly unhappy times seem to come from some intense bouts of gas pains. It seems that he has a couple of hours every other day or so where he’s pretty miserable, and periods in between where he’s uncomfortable, but otherwise he’s a happy little boy. He does still require two-handed holding most of the time: one hand to hold the pacifier in (or rather, keep popping it in) and one hand to pat the butt continuously.

Nolan is still a bit small for his carseat, so he’s not very comfortable in the car, and he can’t be in situations where he’d be likely to be exposed to sickness (like a crowded room), but he has gotten to go on a few outings: a trip to his aunties’ future house, a family birthday dinner, and of course a few trips to the doctor. He also gets to go on nice long walks in the woods when the weather is nice, like it was this week!

Progress on overcoming the left-side preference has also been slow but steady. He’s pretty good about looking to the right with his eyes, but he seems to be less inclined to move his head to look to the right. Sometimes it takes a bit of work to snap him out of a somewhat hypnotic focus on something to his left, but lots of attention is being paid to enticing him to look right.

The best bit of news of late has been from the eye doctor on Friday, who said that Nolan’s retinopathy of prematurity has completely resolved!

So, Nolan is just cruising along doing his growth thang, passing lots of little milestones along the way. Meanwhile, Kara and Ronan are settling into having Nolan home. The supplemental bolus feedings are pretty time-consuming, and feeding in general takes a lot of time and attention. Despite that, life is much more “normal” than when Nolan was in the hospital. Ronan is able to focus on his work much more than he could when each visit with Nolan took a couple of hours at minimum. He’s got a show at the NC Crafts Gallery starting March 1st (stop by and say hi at the opening on the second Friday of March!), and has been getting in a lot more time in the studio. It’s a bit of a stretch (to say the least) for Kara to get to the smithy, but she’s been taking some pictures — a craft that is at least a bit easier to pursue in the snippets of time she has her hands free.

Most important of all, even though they are getting much less restful sleep, Kara and Ronan are much happier and more relaxed with their little babe home.

Keep up the chant of “go, Nolan, go!” especially through the cold season. We need to keep those lungs healthy so all the energy can go towards growth!

Nolan’s grandma Mimi is going to help me keep the site updated, so we’re working on getting a more regular schedule for the updates… Thanks for sticking with us through it all.

-Maria

I’ve gotten lots of emails in the last few days and realize that it’s not clear what happens to the blog now that Nolan is home. Don’t worry, we’re not going away! As there is less and less news (and thankfully fewer crises to ask for support through), I’m sure we’ll post less often, but we’ll keep updating because Nolan’s story is not over by a long shot. It would be very ungrateful indeed to receive such amazing support through rough times and then not share the joyful times as well, so we will make sure to share the pictures and stories of the fruits of all the prayers, love and energy that saw Nolan to this point.

Kara and Ronan don’t have internet access set up at their house at the moment (part of rearranging to get ready for Nolan to come home), so they probably won’t be posting much for a while. I’ll try to take up the slack there…

Now, on to the news.

Nolan did come home on Sunday afternoon, and it was a joyful day all around. There were beautiful colorful greetings and banners and treats and gifts from friends, and Nolan slept through being held by many happy family members (all grandparents were present, plus Deb and myself). Neaka and Sambuka (the canine kids) were unimpressed, having been well-prepared by five months of scent-filled clothing brought home by Kara and Ronan. In the evening, David (Kara’s brother) and Leon and their daughters Coleman and Logan came to visit. Coleman and Logan were Nolan’s only close family members who hadn’t met Nolan (NICU rules, again), so they were very excited to see him.

The forward change in the schedule for him to leave the hospital happened quickly enough that several of Nolan’s primary nurses didn’t get a chance to say goodbye to him. Hopefully they’ll check in here and follow his progress like Tara has! We can’t thank the staff enough for the loving care they gave Nolan on his journey.

Nolan has had two full days at home now, and has had his first trip to the doctor (though the hospital was kind of a five month long “trip” to the doctors’ office). He’s already grown (in length, not weight) since leaving the hospital! So much accomplished since the four month birthday… In the last month, Nolan has tacked 25% more onto his weight (now at 5 lb, 13 oz, I think), said goodbye to the ostomy bag, broken in his new g-tube, kicked the supplemental oxygen entirely (hurray!), and COME HOME! Happy Birthday, Nolan! Good work, little man.

For some reason, I can’t insert into this post the pictures I just uploaded, so you’ll have to visit the gallery to see the pictures of Nolan’s homecoming.

-Maria

About an hour after my last post, I got the news that Nolan is ready to come home now.  During rounds this morning, the doctor said he was ready to begin the discharge process!  Tonight (Friday night) Kara and Ronan are sleeping at the hospital in a room with Nolan.  I assume the hospital does this to make sure they have a chance to step through the nighttime routines once while staff are available to answer questions, and to give them some kind of transition space.  After the night at the hospital, they have a “rest night” at home, then Nolan will come home with them on Sunday.  Sunday!

Yesterday, Nolan had his regular eye exam and head ultrasound. Both were good reports: the eye exam showed continued improvement, and the head ultrasound showed a normal brain. I’m a little torn about sharing this news about the ultrasound, because it came through several people before it got to me, so there’s always the chance it will be revised if I didn’t understand it correctly… but it’s such good news that even if a bunch of caveats were attached later, we’d still be happy jumping beans!

They’ve been monitoring his brain since they found the grade 4 bleed on one side in his first few days. As the blood disappears (very very slowly), they look for cysts and scarring that would indicate permanent damage from the bleed. If they saw damage, they still wouldn’t know what that meant for specific developmental problems, but it would mean that he was much more likely to have some problems later on. As I understand it, the report of a “normal” brain means that there is no evidence of the bleed (either blood or scarring). I’m not sure whether scarring or cysts could still show up later or not, but it’s great news for now!!

Go Nolan Go!!!

In other news flashes… yesterday, Kara and Ronan got the news that they are targetting NEXT THURSDAY to send Nolan home! That would be the day after his five month birthday.

Happy dances all around,
Maria