Updates on 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

The H word has not only been uttered, but they’re actually getting specific about it. On Monday, Kara & Ronan got the word that Nolan would be (expected to be) ready to go home in TWO WEEKS!! This is exciting but has many other associated emotions as well. Stress would be one of those emotions, since there is much preparation to be done. Nolan came so early that the nursery had not been set up for him, and since then, all energy has been focused on the hospital and, at home, on keeping up with the basics of life (food, income, dog love…), so now there’s a bit of home prep to do.

Home still remains in the realm of the future, and predictions. We do have a bit of very exciting news about an actual event: a couple of days ago, the nurse took Nolan off the nasal cannula! He was doing really well on almost no assist from the cannula, so she thought she’d just give him a try off it, and he did fine!!! As far as I know, he has stayed off the cannula since them, even through a very unhappy and agitated afternoon yesterday (experiencing a bit of a withdrawal from the pain meds).

As a result, when Kara gave him a bath the other night, she got to see him completely naked and unattached to machines for the first time! His little face is free and clear and can be viewed in all its cuteness without obstruction…

This also means he may be able to go home without oxygen, which makes things a bit easier — less to haul around and maintain and have in the way.

Nolan has his g-tube for feeding, but it has a little “button” cap so he does not have a tube hanging out all the time. He can be burped through the g-tube, which works very well. He’s back to regular breastfeedings.

Oh, and how ’bout dem Heels? I think Nolan lent them a bit of his super-comeback, never-give-up-the-fight spirit last night…

All in all, lots of good news coming our way this week. Stay focused on growth and steady progress!

-Maria

nolan was officially extubated by officials this morning at 10 am and is doing great with it.  back on the nose canula, oxygen saturation at basically room air, and a very low pressure to help him along.  very good news. but the real news is that on rounds, immediately after the nurse practitioner said it may take a few more days for nolans bowel function to start back up, his nurse, kara and i heard what can only be described as a “fart”, and upon closer inspection (opening his diaper) low and behold:  POOPY!   this is significant because it means his bowels are doing their job and very soon he will be able to start feeding again, which means we will be able to try out his g-tube and kara can nurse again, which means he will keep on growing and come home and…the sun is shining bright in chapel hill and the day is much easier than the couple before.  a homerun was hit with that poopy, the shot heard round the world. 

Nolan seems to have tuckered out yesterday and had a couple of “events” that led the docs to reintubate him last night/early this morning.  He was having trouble maintaining his breathing and heart rate which could have resulted from the sedation he is on for pain maintenance, in addition to all the extra fluid he is receiving through his iv and the fluid his body and lungs are retaining, in addition to some potential collapse in his lungs.  no one knows for sure, but most believe its a combination of a lot of factors, the biggest contributor being the fact that Nolan is a small, premature baby who already spent a long time on the ventilator and just underwent major surgery.  a tall order even for a superbean.  kara and i feel a little better after hearing the docs say this is a bump in the road, not a tremendous setback, and that they believe nolan will be doing better and better as he recovers from his surgery.  Still it is undescrbibably difficult to see your little baby in pain and seemingly in a place we thought we had long passed through.  Keep us close as usual and pray for Nolan to rest and regroup.  Again and again, thank you all for your love and support.