Updates on Nolan

Peter, can we take the 40 pounds in smaller increments? I don’t think it would be healthy for Nolan to suddenly increase his weight by 2000%, but we could use a pound or so pretty soon…

Nolan had a couple of scary episodes yesterday where he desaturated and had to have a bit of emergency intervention from the staff. I believe his heartrate slowed way down and he desaturated way too much and they had to bag him the first time. The second time, they changed his vent tube. We hope that fixed the problem — there was a bit of goober in his tube, so it might have been that he was stopped up, but regardless, it highlights the fact that he just isn’t going to get off the vent until he grows a good bit more, and right now, he’s not growing as fast as they would expect. He’s falling behind on the growth curve, when what he really needs to do is catch up to it.

They’ve fortified his milk with extra calories already, and have just upped the fortification, so we hope that will provide some results. They’re really not sure what the problem is, which makes it hard to fix. They’ve tested his thyroid levels, but they’ve gotten the results of that back and made no comment, so they must not think that is the problem.

On the very positive side of things, they examined Nolan’s eyes the other day, and they are developing normally. Eye problems, from minor impairment all the way to complete blindness, are a common side-effect of the high vent settings that Nolan has been on (the rich oxygen concentration causes the blood vessels to grow differently), so we are really pleased to hear that it looks like his eyesight has been spared so far! They’ll keep checking his eyes every few weeks to make sure problems aren’t developing, but things look great at this point.

Pray for Nolan to get maximum use out of his liquid gold and grow, grow, grow. Oh, and speaking of gold, the other day, I calculated that Nolan’s birthweight was worth $10,000 in gold on the open market! Priceless to us, of course.

-Maria

I must be superstitious, or at least like things to coincide in certain ways which seem auspicious to me. At any rate, I have been hoping that Nolan would manage to double his birth weight for his 2 month birthday, and Nolan was very cooperative. Today, he weighed in at 1040 grams, just 10 grams over the goal!

For Nolan’s birthday, his nurse Trish made super-rich brownies to share. You may remember Trish for her superman cupcakes from last month’s celebration… It’s no surprise to any of you, I’m sure, but Nolan has won over the hearts of the nurses despite their obvious incentive not to get overly attached to the babies in their care.

For Kara’s birthday, I am posting some “happy mom” pictures from Sunday. There are still scary times for Kara and Ronan, including the sad loss of another baby in Nolan’s pod last night, but things have been more stable and we do get to see many more smiles from Kara and Ronan these days. It’s wonderful that kangarooing Nolan is not a rare event anymore.

My next dream: no vent and the freedom for Kara and Ronan to hold Nolan so they can see his face and kiss him while holding! Three months, here we come!

In case you need a visual to help you with that growth goal, this picture from the very first kangaroo session is just to remind you how much smaller 500 grams is than 1000 grams… Go Nolan! Go Team Nolan!

Speaking of Team Nolan and celebration, I want to take this chance to say again how very grateful we all are for the loving presence of each of you out there. You each make it seem effortless, but I know that it’s hard to give so much love, support, thought, and attention to a person you’ve never even met. Thank you for tuning in and loving Nolan and his parents so very much. You make the world go ’round.

The theme of tonight’s picture posting is hands. Lots of hands. These pictures are from Sunday, 11/12.

The one hand you might not notice is the Zaky behind Nolan in the first picture. It’s the brown fleecy thing, designed to be like a parent’s hand, a bit like a body pillow for little babies. The UNC NICU is trying them out.

Nolan was nearing time for another Fentanyl dose, as you can see in the second picture. Check out those white fingertips! He’s got quite a grip when he’s angry, and if you don’t give him anything else to grab, he’ll grab his vent tube with that grip. We don’t like that so much, so we try to give him a finger to take his frustration out on. When he’s upset like this, he screws up his face and looks for all the world like he’s gonna bust your eardrums… but there’s no sound. His weak little lungs can’t overcome the vent tube to make sounds. One thing about the NICU is that there are lots of alarms, but you don’t hear babies crying as much as you’d expect.

Nolan goes from sleeping (or looking like it) to angry writhing to sleeping again in a remarkably short period of time. Unfortunately, with the Fent wearing off, he gets back to upset again in short order.

Tuesday is a big birthday day, so sing a song for mom and son… Kara has a real birthday, and Nolan has one of those not-quite-as-usual birthdays we like to celebrate: two whole calendar months since he was born on September 14th!  We have so much to be grateful for.

pictures from Nov 9th…

when he was busy celebrating eight weeks out of the womb by snuggling with his mama.

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It has been slow going getting more pictures uploaded but I will try to get one or two up every day since we’re in a slow news period. Here are some pictures from last Friday of Ronan and Nolan kangarooing.

Pretty sweet, huh?

I love Nolan’s tiny little hands.

Stay tuned for more of the same… one of them is kangarooing every day now! I do have a few slightly different pictures up my sleeve, though…

-Maria

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Nolan has been very stable over the last few days. Kara or Ronan has gotten to kangaroo every night for the last four days, and it looks like the trend will continue! Nolan’s platelet count is at a whopping 329,000 and waste output continues to be excellent so they are increasing his milk intake a bit faster now. In fact, the other day, he had a diaper with 75cc of urine in it… If I’ve done my conversions correctly, that’s about 8% of his body weight! Needless to say, he lost a bit of weight with that one, but now they really think he’s lost all the excess fluid. Really.

Here’s a picture of Kara and Ronan and Nolan from Wednesday. A rare kind of picture, since it not only requires one of them to be kangarooing, but it also requires three people to be at Nolan’s bed, and that is Not Allowed though we obviously try to bend the rules sometimes. Treasure this particular picture. Exciting news on the picture front, though: my friend Satsuki has kindly lent me her camera for a few days, so I will be able to get some better pictures of Nolan, and hopefully even a passable video. In fact, I got some great pictures last night but haven’t had a chance to upload them yet. Keep an eye on the photo albums. There are already a few new pics from Wednesday of Ronan kangarooing.

It’s really going to blow Nolan’s rep when he’s 15 and being cool in front of his sweetie and his parents tell the story about when he was a baby and there was an entire website where people checked in on and commented about his bowel movements. And since Aunt Maria will be the one who gets the blame for starting that little thread, I feel the need to offer up another topic for comment to distract everyone.

I don’t have much in the way of real news to report, but I do have a fuzzy picture to share. Last night when I visited, Nolan was awake and doing his best to look around. I tried to take a video but it was far too dark. I wish I could have shared with all of you. He doesn’t move his head much but he manages to move his face a lot. I know that doesn’t make much sense, but there’s a lot of scrunching of the forehead and the rest of his face, and it feels like he’s moving his head around. He was also moving his hands a fair amount and yawning, which is very cute despite the vent tube in the way. (However, in the freeze frame of pictures it not only looks very blurry, it also looks like he’s trying to scream, which is more horrifying than cute.  So I won’t be uploading yawn pictures just now.)

Last night I was also aware that he actually had hair on his head. It’s not a lot by baby standards, but it was the first time I’d really noticed it. It’s very light and fine and surprisingly long. And I would have stroked it if it weren’t for that dang fear of causing him to desat suddenly…

He’s holding reasonably steady on the oxygen overall, though. Not so many random desat fits, which is great.

Goodnight, and thanks for checking in!

p.s. For those who haven’t figured it out: if you click on the pictures in these posts, it will take you to the photo gallery and a bigger picture.

Since it’s a big surgery day, I thought I would post a couple more pictures to help you all visualize our little bean growing just like Jack’s beanstalk.

These are older pictures, from when Nolan only had one eye open.  It’s hard to get pictures with a point-and-shoot camera because it’s so dim in there, so I’ve never gotten any with both of his eyes open (if anyone local has a digital SLR I could borrow, I might be able to get better pictures).  The toes…  well, they’re just cute.  His heel is bandaged because they have to stick his heel to do all those blood gas checks (which they are having to do fewer of these days, by the way).

We’ll let you know when there’s news about the surgery.

Nolan is feeling contrary today and decided that he wasn’t ready to do as the doctor said. He’s continuing to do very well despite the expectation that he would be struggling now. He stayed about the same all through the night and has been stable today, so we are counting our blessings and hoping that this trend continues. I know we have all learned that good times are always followed by down times, in that “three steps forward, two steps back” manner (though sometimes it feels like we’re walking in circles even with the forward movement), so we are trying not to lose sight of that inevitability… but WOW, our spirits are sure lifted for the moment. We’ve been in the low point for so long that it just feels great to get some good news and to know that Nolan is getting a break from the hard hard struggles of the last week.

Kara and Ronan are a bit better than the rest of us at keeping it all in perspective, but still I know that they are happy to have this time right now. One of Nolan’s nurses who is very careful not to raise hopes too high (her own or ours, so as not to make the inevitable fall so hard) said she was surprised and very pleased with Nolan’s condition. Hooray!

I’m slowly getting some older pictures uploaded into the photo album. This is a picture from Ronan’s first kangaroo with Nolan last week.

Oh, and I wanted to correct my earlier statement about the bruise and the ultrasound. Turns out the bruise was on his skin and he had external swelling there, which is not a usual presentation of anything (one veteran nurse said she had never seen that in 20 years), and that is why they decided to do the ultrasound. The ultrasound showed an area of concern, but they weren’t sure whether it was necrotic tissue or not, leading to the question of whether to put him through surgery or not. Or course, Kara and Ronan and the doctors made an excellent decision there.

Thanks for all the love and support and shared joy!

Before the chatty stuff, the quick news is that the surgery was successful and Nolan came through it great. Hooray!

Today was Nolan’s four week birthday — happy birthday, Nolan! One of his main squeeze nurses, Trish, brought in birthday cupcakes for the trooper. Okay, not actually for him to have — I think it’s against NICU policy to blend up cupcakes and mix them with the breast milk at feeding time. Something about too much sugar?… The cupcakes were superman cupcakes, because Nolan is such a tough little superhero in battling all these problems. How sweet is that?

The superman emblem is actually a ring on top of the cupcake. While we were waiting for news from the surgery, we had pizza and cupcakes in the NICU waiting room and thought superpower birthday thoughts for Nolan. We put on the superman rings and actually laughed a bit and had some fun mixed in with the anxiety of waiting. Apparently it worked, because soon after, Nolan’s surgeon appeared with good news. Nolan was out of surgery already, and they had indeed found a necrotic area in his intestines.Now, we’d rather he didn’t have a necrotic area at all, but given that he had an infection, it was good that they were able to find a clear problem and deal with it. They don’t know if the necrotic tissue is the chicken or the egg with the infection, but removing it should help him get over the infection at this point. If it had not been removed, he would have died, so I guess it’s an understatement to say it will help him. The surgeon removed about 8cm of small intestine and 2cm of large intestine, which Dad pointed out means Nolan will never get appendicitis. So, hey, he’s ahead of the other kids in that department… The surgeon also said that the other parts of his gastrointestinal system that he saw looked great, and that there was very healthy intestine on either side of the clearly dead intestine, which is not always the case. It means it’s quite likely that they got everything they needed to get and no more, and they shouldn’t have to repeat surgery as they might if it was less clear which tissue needed to go and which didn’t.

We were warned that the next three days or so will be very rough on Nolan. He will take on a lot of fluid (he already had, but it won’t get better right away) and that will impact his lung function. So, though he’s out of surgery with no immediate complications, we expect a fair amount of nail biting over the weekend, and there’s the possibility that it will just be too much for his lungs. They hope that Nolan will begin improving lung function on Sunday (back towards the pre-infection baseline, which wasn’t great but was a lot better than the recent crises).

With all that dire stuff said, I’m pleased to report that his stats when we saw him just after surgery were great. He was saturating at 97% on just 40% oxygen, and he was steady as could be in all the things they monitor on those screens. On the monitor, he looked like a different baby to me. I’m glad to be forewarned that things will likely go downhill for a few days, because it would be easy to think he was out of the woods with this one. Of course, it is wonderful to see him so stable, even if it is short-lived.

Kara and Ronan are spending the night at the hospital in a “parent sleep room” that the NICU has for this sort of time, when parents want to stay close to their baby but also need to sleep. Imagine that.

I’m including a picture of Nolan from tonight. As you can see, he’s very swollen with fluid, but that’s just his four-week-old phase and with luck, he’ll be out of that phase soon.

Sweet dreams to all.

Love,

Maria