Updates on Nolan

It’s true, it has been a while since I’ve done a stats update. Part of that is because when Nolan got fluid-logged after the abdominal surgery, his weight shot up to over 1000 grams and then as he slowly lost it, no one really knew how much of his weight was “him” and how much was excess fluid. Now, however, just in time to answer Peter’s question, they do think he has lost all the excess fluid.

On this, Nolan’s first Halloween, Nolan weighs 888 grams and is 32 cm long. For the metrically-challenged, that’s 1 lb, 15+ oz — tantalizingly close to 2 pounds — and just over 12.5 inches. For the statistically-challenged, that’s a 72% gain over his birth weight and a 14% gain over his birth length. Pretty impressive, but then we know that Nolan has much more to show us under the heading of “impressive.”

Also after the abdominal surgery, they stopped feeding him breast milk for a bit (dang that surgery, it just got in the way of all kinds of stuff). They restarted some time ago but had to increment from almost nothing again so it has been slow going. He’s now at 4cc of liquid gold (a bit less than a teaspoon) every 3 hours. He gets fed through a very thin tube that is attached to a syringe of milk that is in a machine which veerrryy slowly squeezes the syringe at a very precise programmed rate. Who ever knew breast milk could be fed in such a scientific manner?

The liquid gold manufacturer is, not surprisingly, supplying at a rate greater than 8 teaspoons a day. Because everything is measured and scientific in the NICU, excess LG is stored in plastic tubes that must be labelled separately for each session. This leads to a large quantity of partially filled containers that must be frozen, which leads to Kara and Ronan’s freezer looking like a science experiment waiting to happen. Nothing but LG containers. No room for ice cream.

Going back to the picture and the question “what’s on his head?”… That’s an IV needle taped to his forehead. Ouch. Preemies, being tiny all over, have tiny veins that are hard to get into and hard to keep open (just one reason why NICU nurses are Amazing). The head happens to have some good veins on it, so Nolan gets to wear a needle on his forehead for now (it moves to a new location periodically). Perversely enough, having the IV needle on his head may well be more comfortable, since it doesn’t get stuck in a joint where it has to be protected and the line is out of the way. Nolan can move his arms all he wants right now.

The thin red line coming in from the top right of the picture is his feeding tube. The vent tube is the larger clear one going off to the bottom left. He’s got various sensors taped to him, and that’s a bandage covering his surgical site. His colostomy bag is tucked into his diaper.

Last set of numbers for the day: Nolan’s platelet count has suddenly skyrocketed again (a good thing). His platelet count is over 200,000 today. No clear reason for the sudden upswing, but as the doc said, “we’ll take that.”

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.

The excellent news of late is that Nolan has had a bowel movement (actually, more than one).    I believe that when they did the heart surgery, they also dilated some narrowed passage a bit, which seems to have cleared the way for waste to exit the body.  This is a Very Good Thing, as it means there is not a blockage that would cause them to have to do another surgery.

Otherwise, Nolan is doing well post-surgery.  Yesterday, Kara reports that he was very agitated in the morning but they managed to get him calmed down by the middle of the day.  It’s a balancing act with the oygen level, pressure, and drugs, but none of those are at notably high levels at the moment.  Clear skies, only very mild turbulence at the moment.

PDA surgery successfully completed!  Now it is on to recovery, which will probably be difficult but we hope will be breezy.  The surgeon did note that Nolan’s blood pressure went up right after the surgery (they’ve been concerned that it has been persistently low), so it looks like that should be one benefit of the surgery.

They’re working on stabilizing Nolan now.  We’ll try to update again once we get more news, though sometimes the news is a long time in coming.

Thanks for keeping watch over the butterbean.

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.

We got a phone call this morning from dad/Lynn letting us know that they have decided to go ahead and do the PDA surgery today, probably this afternoon. It will be scheduled when they have an opening. I’m not sure what brought on the change of plan from “push it back” to “go forward now,” but I did not get the idea that it was a crisis that caused the change of plan. I think he’s in pretty good shape for the surgery at this point.

So, this afternoon be thinking of strong heart and lungs, a very sterile surgical field, attentive surgeons, and a baby who is just itching to grow some more once this pesky surgery is out of the way.

Nolan received a new, shiny bigger ventilation tube today, he is up to a number 3.  this new bigger tube seems to have solved his oxygen leak problem, which will hopefully make oxygenation a little more effective.  he also underwent a contrast study on his intestines this morning which involved shooting dye through his intestines and an xray to see if any strictures (narrowings) or blockages were present.  after a worried night and morning, kara and i are pleased to learn that no strictures were present on the preliminary reading.  and tonight, nolans colostomy had a little bit of oozing green mucous, which is good on the no blockage front.  the oozing more than likely was the barium from the contrast study, and for you potters out there this barium oozing is a good thing.  so, his pda surgery may be moved a little into the future depending on how he fairs (fares?) on the new ventilator settings and larger tube.  Kara spotted quiet a few smiles on Nolans face today, which hopefully attests to his comfort and well being and not to this little beans taste for sweet fentenyl.  So, sweet dreams to yall and breathe deep, breathe easy and keep nolan in mind. peace.

Nolan has had a few days of quiet stability, with a few desats here and there for excitements sake.  He continues to improve in many ways, huge pees, levelling out of his white blood count, weaning of hydrocortizone, etc.  He still needs surgery for his PDA but the powers that be are trying to push the surgery further back to give him continued recovery time from his NEC surgery which happened a little over a week ago.  He’s recieving big love from Utah and Alabama, his uncle Shannon is visiting for the weekend from SLC and his aunts Margaret and Noni are up from Alabama.  The little butterbean has transformed from a love generator into a love magnet.  Keep us in your daily thoughts and keeping flinging that metallic love our way.  Peace to everyone.

Nolan has started to lose some fluid, slowly. He got rid of about 10% over the last couple of days (he had almost doubled his weight with fluid). You can see the difference if you had seen him before, but he’s still a swollen little bean and has a ways to go.

They weigh every diaper to check urine output… so for now, you get to focus your thoughts on producing more heavy diapers. Pee, Nolan, pee!

And, oh, gosh, we passed by the 5 week milestone without comment. Happy birthday, Nolan! Thursdays will never be the same now that we get to celebrate your birthday every week.

The doctors decided that Nolan wouldn’t need surgery this week for his heart, but he may need it as soon as next week.  He has patent ductus arteriosus.  The ductus arteriosus is a normal fetal blood vessel that shunts blood away from the pulmonary artery in the womb, where the baby doesn’t use his lungs because he gets oxygenated blood from the placenta.  Once the baby is born, the change in oxygen levels causes the ductus arteriosus to close naturally within the first day.  In many premature babies, this doesn’t happen.  It’s called patent (pronounced pay-tent) ductus arteriosus, or PDA.

As you can imagine, having a blood vessel that is designed to shunt blood away from your lungs because you don’t need your lungs, isn’t that helpful when you actually do need your lungs.

PDA could still resolve on its own for many babies, but in Nolan’s case, they believe it is a significant enough part of his persistent lung problems to warrant surgery as soon as they feel he’s ready for it.  It’s a pretty hard surgery (Kara says they have to move his lungs out of the way), so there’s a fine balance between waiting until he’s strong enough to handle it well, and knowing when the waiting won’t help much more because he can’t get stronger lungs without it.

We’re glad he doesn’t need surgery right away, but we hope that when he does have it, it will help his little lungs clear up and not have to struggle so hard.

Otherwise, things remain much the same.  Thanks for staying tuned in as the news slows down a bit.