Updates on Nolan

Nolan is stable after a rocky night of fits of agitation and desaturating on his oxygen, even while sedated he managed to be upset.  This morning and early afternoon he has been exceptionally chill and has slowly been weaned down to 42% added oxygen, his weight is up to 608 grams and his CO2 this morning was in the 60s, which are very good numbers considering.  He is still tolerating Kara’s milk and he also had a remarkable elimination yesterday according to one of his primary nurses Trish. Today his footprints were taken for his official birth record and a take home record and his bedside stats and on a piece of paper from dad’s journal.  We figured while he was inked up we should get as many prints as we could. His steroid dosage is going to be cut back a little bit today, so sometime tomorrow we should see how he responds to that.  Kara and I feel a little joy in his current and fleeting stability, but we also know that he will probably have a bad time soon.  Relish this moment like a shining facet on a many sided stone.  More news as news unfolds. 

Tonight, Nolan turns two weeks old.  Happy birthday, Nolan!  As a birthday celebration, he busted through the 600 gram milestone and today weighs 608 grams.  That’s 18% over his birth weight.  Grow, Nolan, grow!

Earlier today, Nolan was not doing as well as we had hoped.  He wasn’t doing any worse, he just hadn’t improved over the previous 24 hours as expected.  This afternoon/early evening, his condition did improve somewhat.  Tonight, they have his oxygen down to 40% for the time being, and his saturation has held at 95% or so, even through blood draws, diaper changes, and other unpleasant experiences.  He appears a bit agitated, but maybe that’s because….  drumroll please….  he opened an eye!

Yes, he’s a bit of a little pirate right now, with only one eye open.  We know he can’t really see us, but it’s sure tempting to think he can.  The lights are very low in the NICU so it was hard to get a good picture, but I tried.  I will post the result tomorrow if I can get my computer working again.

Tomorrow at 3pm Nolan will get his first reduced dose of steroids.  We hope he’ll continue to improve even as the dose is reduced.  Keep those prayers and love coming!

-Maria

Nolan is holding his own today with the help of the steroids.  They’ve got his oxygen down to about 50% and he is breathing over the ventilator by about 10 breaths a minute.  They were able to reduce his tidal volume on the vent some, but decided to increase it back as his carbon dioxide numbers started going up past the nurses’ comfort level.  His blood pressure remains low to normal, I think (as I understand it, typically steroids would cause concerns about high blood pressure, but Nolan’s has been unusually low so that would actually be a beneficial side effect to a point).

They expect that the steroids may have more impact as we reach the 24 hour mark from when he got his first dose (that was Tuesday in the late afternoon).  I think they hope they’ll be able to lower his tidal volume again at that point.

To balance out my long post earlier in the day, I have a very brief update.  I didn’t make it to the hospital to see Nolan today, but I understand he’s doing reasonably well.  They did decide to begin a course of steroids today.  I believe that he has begun to respond to it and they have been able to lower the oxygen level to a place they’re more comfortable with.  I don’t have much more detail than that, unfortunately.

The way the steroids work is they start with a large dose for a couple of days and then taper off over the course of a week.  So, of course we want Nolan to respond to the steroids in the first place, but we also want to see him maintain as they are tapered off.  That will be something we’ll be watching for as the course progresses.
-Maria

This update covers yesterday only, so it’s already old news. Sorry about that, but I don’t yet have any news for today and I wanted to go ahead and get something up on the site.

Sunday night was a very rough night for Nolan. Kara and Ronan stayed at the hospital all night because they were very concerned about Nolan (they did sleep, but they wanted to be close by so they didn’t go home). As I understand it, the primary concern through the night was Nolan’s sensitivity to environmental stimulation.

Oxygen saturation in the blood is a marker for the immediate effects of stimulation to a baby and how well he’s tolerating pokes and prods. In the NICU, stimulation includes touching from visitors, moving and blood draws by nurses, alarms from equipment (his and other babies’), other noises, and light. Everytime Nolan is moved or has something done to him, you expect his oxygen saturation to drop for a short while. Oxygen saturation is measured by a little sensor on Nolan’s foot and is displayed on the monitoring screen in real time. It’s important for the “usual” value to be above 90, or Nolan’s not really getting enough oxygen distributed through his body.

Nolan has been having a fairly steady saturation in the low 90’s (percent — 100% would be the best), and when he’s disturbed, it might drop into the high 80’s or even high 70’s for a minute or so before climbing back up. On Sunday, he was apparently overstimulated by the oscillating ventilator and became much more sensitive to all the stimuli. For instance, normally you can’t see much of a change in his saturation when alarms go off, but on Sunday night his saturation was dropping in response to every alarm and even loud voices (and the alarms go off all the time — for example, everytime one of the babies drops below her acceptable threshold of saturation because she got moved, so you can see how it could be a bit of a spiralling problem). It wasn’t coming back up as quickly, either. In trying to address the problem, they put little adhesive earmuffs on Nolan, stopped touching except when absolutely necessary, put blankets up around his bed to muffle noise, and put up a sign asking people to enter the pod from the other side. He was still very overstimulated.

When oxygen saturation drops for an extended period of time, you have to increase the incoming oxygen from the ventilator to compensate. Pretty quickly, you get up to 100% oxygen (which is not the direction you want to be going), and then there’s nothing more you can do to address the situation by adjusting the ventilator. In Nolan’s case, they had to give him sedatives to reduce his response to stimulus and eventually paralytics in order to keep him from stimulating himself with movement.

It was extremely frustrating for Kara and Ronan to watch because some of the stimuli feel controllable (like alarms and loud voices), so of course they wanted to control them. You can imagine the feeling of watching the monitor for hours, hearing alarms go off and knowing that a few seconds later Nolan would respond negatively. It was also very scary because it wasn’t clear if he would just continue to be overloaded and they would run out of options. There is an isolation room which would be much quieter, but it’s primarily intended for isolation of infectious patients, so if a sick baby came in, Nolan would have to get moved again in short order. And it wasn’t clear that the larger ventilator would fit in the room easily.

Nolan made it through the night and the next afternoon without completely overloading on stimulation, and on Monday afternoon they took him off the oscillating ventilator and put him back on the regular ventilator. They stressed that this was normal, and they might have to move him back and forth between ventilators several times to keep getting the benefits of each. Though he didn’t stay on the oscillating ventilator very long, they did feel it was good that they had been able to bring his carbon dioxide levels down for a while. At this point, they are simply trying to buy time to allow his lungs to grow.

Steroids remain an option down the road, but the doctors want to avoid using them if possible. Yesterday, Nolan was doing okay on the conventional ventilator, and I’m pretty sure they had the incoming oxygen down to 60% or so when I left. He was much less responsive to stimuli, so hopefully Kara and Ronan will be able to touch him again now.

The good news for yesterday was that the second head ultrasound showed no change from the first, which showed a Grade IV bleed on the right side only. The ultrasound was done on Monday afternoon, after Nolan had been on the oscillating ventilator for over 24 hours, so I take that to be a good sign that the vibrations might not be harming Nolan’s brain.

That’s about all the news I can remember right now. I’ll add anything else I remember into the next post.

-Maria

It seems that the oscillator is helping ventilate Nolan, it is helping his CO2 exchange and his heart rate is maintaining stability.  These are the positive aspects of the oscillator.  The docs are concerned that they are having to maintain a very high pressure to get Nolans lungs to inflate.  This is one of the negatives.  They are trying to wean him from the pressure.  Things are evolving, unfolding and we will keep yall posted.  Keep us near to you. Thank you.

We’ve all left the hospital for the night, and I have a little more information now than I did at the last post. The problem with the CO2 seems to be only one part of the problem with Nolan’s lungs. He is building up too much CO2, presumably because his lungs are not expelling enough after each breath. However, it is also the case that his lungs aren’t strong enough to handle the ventilator. I believe they’ve moved the vent back up to full volume, which puts a lot of pressure on his lungs every time it inflates them. It essentially scars them, potentially creating a lot of severe long-term respiratory problems.

The oscillating ventilator would resolve at least the first problem and possibly the second problem. The way I understand it works is that it keeps the lungs inflated all the time and gives lots of quick small puffs. Kara said that it would breath out for him as well, unlike a traditional ventilator which just puts air in the lungs and relies on the natural “collapse” of the lungs to push air back out. Nolan’s lungs aren’t pliable enough to push that air back out on their own. The oscillating ventilator would get it out for him, and I think that by keeping the lungs inflated and having to use less forceful pressure, it would injure his lungs less. Of course, there’s a drawback, or they would have put him on it a long time ago. Apparently it vibrates in order to do its job. The vibrations pose a real risk to the fragile blood vessels in Nolan’s brain. As long as the bleeding stays in one side of the brain, there’s a reasonable chance that the other side of his brain will be able to compensate for any damage done. Using the oscillating ventilator would increase the risk of bleeding on the other side. (Here is the original post about the bleed.)

The steroids would help the lungs grow, which could help them begin to push air back out as well as resist injury. However, the steroids are associated with marked increased risk of cerebral palsy and mental retardation, so they don’t come without problems, either.

They will do another blood gas check at midnight tonight, and if the CO2 is not looking better, they will try the oscillating ventilator.

Pray tonight for Nolan’s lungs and blood vessels to be stronger than they seem and to mature quickly. Hold Kara and Ronan in your thoughts as they try to make sense of so much inconclusive information.

Thanks for all your support,
Maria

I’m sorry that we didn’t get an update on the site yesterday. I know it’s a bit nervewracking to be without information for so long. Even though I’m doing a lot of the updating, I still check the site constantly in case someone has written a comment or has had a chance to update. We really appreciate every comment that has been left, and knowing that so many people around the world are thinking of Nolan all the time.

I don’t have a lot of information to update you with, but I’ll give it my best shot. Yesterday, Nolan’s CO2 exchange became an issue again. One particular blood gas reading was up about as high as they are comfortable with, then went back down close to normal, then back up again. Today it remains high, and they are looking to other options to help Nolan. One option is steroids, and another is a high frequency oscillating ventilator. I don’t have any details about either of these options, but I wanted to share where we’re at right now. Tonight, Nolan can use your prayers and love more than ever, so please share everything you’ve got.

Thank you,
Maria

Today Nolan is one week old! It’s an amazing milestone. It’s hard to believe that he’s already a week old; at the same time, it’s hard to believe that only a week has passed. For family members, all of our lives are so very different today than they were a week ago. Emotionally, spiritually, physically, socially… it’s amazing how much you can change in just one week. Our days have a radically different tempo to them. People have appeared out of the woodwork to offer love and support. It’s been quite a journey for the extended family, and that only begins to touch what it has been for Kara and Ronan.

In celebration of the first week of Nolan’s life, I’ve pulled together a photo gallery. Not only can you look at all the pictures of Nolan’s life, but you can send pictures directly to Shutterfly for online printing, or download pictures to your computer. You can always get to it from the “photo album” link in the menu to the left. You can also get to it by clicking on any of the thumbnail pictures in the posts here. I’ll post a few of my favorites tonight.

Here’s Nolan’s uncle Shannon, sharing an anti-jaundice light bath with Nolan. The fabulous drawing was given to Nolan by his cousin Logan, and hangs at the foot of his bed. (To me, the drawing says “Small? I’m not small! You’re just big!”) Sadly, Shannon had to return to Utah today. We’ll miss him a lot and hope that he and his wife Amy will be able to visit again soon.

I love this picture of Nolan holding a finger (mom’s? dad’s? I’m not sure.) He’s on his glowing anti-jaundice blanket which makes him super-stylin’. That thing on his head is the mask they use to cover his eyes from the blue overhead light. Mostly, I just love how beautiful he looks holding his parent’s finger. “Small? I’m not small, I’m just reminding you how amazing life is.”

Happy first week, Nolan! Yours is the happiest 1-week celebration I can imagine being a part of!

love,
aunt maymay

Today was another in what we hope is a continuous succession of stable days.  Although we are assured of more ups and downs.  Doctors and nurses on rounds this morning said they were very pleased with Nolan’s state at the moment.  He is still being weaned off the ventilator, little by little, and they may take out one of the lines (a PAL (?) line i think)  which would give them the ability to give Nolan some more nutrients and such to help him to start growing and putting on weight.  He was down 30 grams today, to 470, but the docs assure us that his weight will continue to fluctuate.  He still seems to be tolerating Kara’s milk, which he gets about 30cc a day, i think that’s the correct number, i know they keep telling us it is a tiny amount for his tiny gut.  And any amount of mother’s milk is golden for Nolan now.  One last little observation: Nolan looks like a little fuzzy frog when he is laying on his belly.