My Boys

Remember how excited I was about being able to dress Tukker? Yeah, well, apparently I forgot who Tukk's daddy is. The nurses put him in clothes twice, but he got so sweaty they've decided to just keep him nekked so they can still swaddle him in a blanket without overheating him. Apparently all that talk about how preemies generally have a hard time keeping their temperature regulated on their own and how they sometimes need to stay in a heated bed for a while doesn't apply to a Bott boy. It looks like I'm going to spend the rest of my life wearing thermals in July because my boys' internal temperatures run about 20 degrees hotter than a normal human.

Besides getting irritated when he's too hot, Tukker is doing fantastic. He's still on CPAP, but they've been able to decrease his pressure from 8 to 6. Once he can stay stable on a pressure of 5 they'll take him off CPAP and put him on a nasal cannula, which is just a little tube that runs under his nose with prongs in his nostrils that give him a bit of extra oxygen.

They've taken him completely off his pulmonary hypertension medication (Flolan), and he's getting full feedings of milk now so he doesn't need IV fluids anymore. He's still getting a little morphine and Versed (that's a sedative/amnesiac), but he's being weaned off both of those two, and he gets them orally now instead of in an IV. Because he's down so much on his IV needs they were able to pull his PICC line, so now he just has the Broviac line in him - otherwise he's IV free. This is good because the fewer lines he has, the less chance he has for getting another infection.

The only big worry right now is that he's got a thing called ROP, which I think stands for retinopathy of prematurity. It's an eye disease that's pretty common in preemies. I'm not exactly sure what it is, but something about the retina gets too many veins attaching to it too quickly, which can tear it and damage it permanently. They check him every week, and if it gets much worse they may have to do eye surgery. I think it's just a quick laser surgery where they go in and zap some of the veins to take pressure of the retina, but I need to talk to the eye doc to find out for sure. I don't think it's a huge deal, but of course any form surgery gives me anxiety, especially after how poorly Tukker handled the surgery to place his Broviac line. He was much sicker and smaller back then, though, so hopefully if he does need surgery he'll tolerate it just fine. But if you want to send some extra prayers up specifically for this problem we certainly wouldn't mind!

And here are some pics of my boys for your viewing enjoyment:

Mini Super Cole, circa 1985

Caulder showing Tukk his sweet new scar (road rash from a serious "running too fast down the street" accident)

Tukker showing CJ his chest tube scar.

Tukk's gigantic yawn. Apparently being a preemie is very exhausting.

And here's a video of Caulder carrying on a conversation with his baby brother.

Ho-Lee Crap!

I know, lovely title for this entry, but that’s what came to mind when the hospital called me yesterday to give me some news. Ladies and gentleman, at 12:15 pm yesterday, the Tukkster officially came off his ventilator! The little boy they said would never breathe is now breathing all by himself (well, with just a little help from CPAP). Amazing!

Monday night when I left the hospital he was only getting 8 breaths per minute from the ventilator, and he was taking between 60-70 total breaths per minute. His settings were low enough on the vent that they decided to pull the breathing tube out of his lungs and see if he could make a go of it on his own. They’ve put him on CPAP now, which is just a little prong that sits in each nostril and pushes air down. That makes it easier for him to pull the air into his lungs, but he has to actually do all the mechanical breathing on his own. Way to go Tukk!

And now that the breathing tube is no longer blocking his vocal chords he can actually make noise (the little green tube you can see in his mouth is his feeding tube. They keep it in all the time to let air out of his belly - sort of like the NICU version of baby burping!). Check this out... it's the most amazing noise I've ever heard!

The Proper Way to Eat Spaghettios

1. Refuse to get dressed after your tubby.
2. Take a large scoop of Spaghettios and dump it on your belly.
3. Drop the spoon on the couch, extend your index finger and eat each O one at a time by poking your finger through the middle and then sucking it off.
4. Finish the meal with a grand flourish by peeing on the couch.

Caulder’s been busy refining his fine dining skills. Tukker’s been busy kicking butt in the NICU. He’s been losing weight pretty much all week, so hopefully he’ll be able to get rid of all his excess fluid soon. Tonight he weighed in at a whopping 5 lbs 3 oz! They want to get him down to about 4 lb 6 oz, but even then he’s gained quite a bit since his start at 2 lbs 5 oz.

But the big news is that after 10 weeks on the oscillating ventilator, he was finally upgraded to a conventional VIP ventilator. This is a major step forward for him. Babies are hardly ever on the oscillator for that long, but he’s just been too sick to switch to something else. On Thursday the docs decided to give it a go, and he’s been doing awesome on the VIP. The oscillator gave him about 400 teeny breaths per minute and kept his lungs pushed open all the time, but the VIP helps him breathe more normally, with regular breaths in and out.

We weren’t sure if his lungs were well enough that he’d be able to stay on the VIP, but this morning his doctor called and said that for how sick his lungs have been, he’s doing amazing. Being on this vent not only means that his lungs have made some crazy progress in the past 2 weeks, but it also means we can hold him more often and he can switch to a big boy crib now. In a bigger crib he can wiggle more, get more physical therapy and have things like mobiles to help him develop his sensory skills. Plus he gets to wear clothes and be swaddled in a big boy bed.

Our Little Junkie

Tukker had a pretty good weekend. He’s still so swollen that he can’t open his eyes, and the doctors were concerned that his infection was coming back or that he had something new, but so far all of his blood cultures are coming up negative, so we’re hoping he’s just swollen.

Now that he doesn’t have chest tubes they’re also trying to wean him off morphine. He is NOT happy about this. The little junkie thinks he needs his fix! They tried to cut him back last week, but he got so agitated they had to go back to his regular dosage. They’re trying again this week, but they’re tapering off even more slowly than they were before, so hopefully that will go better.

The cardiologist saw him today and said that he had no more signs of pulmonary hypertension. Can you believe it? We've gone from absolutely no progress on this problem in 7 weeks to having no signs of it in the last 2 weeks. Clearly the prayers are working, so thanks everyone! The docs are going to cut his lung medication (Flolan) in half and then check him again Thursday. If it’s still looking good they’ll either cut it again or take him completely off it. This is good because it’s good to get him off any juice they can, plus the cardiologist said Flolan can sometimes make you swell, so that may be why Tukk has such a difficult time getting rid of fluid once he starts swelling.

And they’re also going to start increasing his feedings as of today. They’ve only been giving him about 1 ½ teaspoons every 3 hours to get his guts ready for real food, so now they’ll start gradually increasing the milk he’s getting to see how he handles it.

But my favorite thing about this week is that we were able to hold him two more times. They have to unhook him from the ventilator for about 20 seconds in order for us to hold him, so I have a mini heart attack every time, but his oxygen levels never drop, so it doesn’t seem to bother him for that short amount of time.

And when we went in on Saturday the nurses were playing dress up with Tukk. They actually had him in clothes. It was hilarious. They were preemie sized, but they were still huge on him. Look at how cute he looks.

We also took CJ camping this weekend. He's been dying to go, but every weekend I would chicken out (because we wouldn't have cell service, which means the hospital couldn't get ahold of us if there was a problem). I finally got brave enough this weekend to go up Fairview canyon for 1 night... although I did make Cole drive up on the skyline so we could get service and call to check on Tukk.

It was really fun. Caulder loves being outside and being dirty, so camping is heaven for him. We did a little fishing, went on a 4-wheeler ride, ate hot dogs and spent the night in Cole's parents' trailer.

Things Are Looking Up

Despite the pneumonia, Tukker has been moving forward like a champ again. This weekend was rough, but for the past two days he’s been stable and seems to be overcoming the infection. His doc also found something growing from one of the chest tubes so - insert drum roll - he yanked them both out Monday night. Hooray!

He and the infectious diseases specialist thought it would be good to remove them at least until he recovers from the infections. But we’re all hoping he won’t reaccumulate fluid in his chest so we can leave them out permanently. It’s been about 36 hours and his oxygen is still really low, so that’s a good sign that the chylothorax — excuse me, I mean the damnchylothorax — has finally healed. The doc says the real test will be when they start giving him full feedings of regular milk, instead of the fat-free variety, but hopefully we’re done with chest tubes.

They’ve also taken Tukk off his inhaled nitric oxide. He was getting this in his breathing tube to help with his pulmonary hypertension. Being able to come off this means his lungs have made some real progress. They've also been able to wean down the pressure on his ventilator. They had it up to 20 this weekend, but now it's down to about 13.

But the best news is that I got to hold him again last night… IN MY ARMS!!! No pillow this time, just one stinking cute little boy cradled right in my arms. He snuggled in and went to sleep. I can’t even begin to tell you how good it felt to finally love on that boy.

I also need to update everyone on the Sieginator. He's still crazy. He only stops talking when he's asleep (although sometimes he doesn't stop even then) or when he's screaming because we're making him take his monthly bath (okay, he gets baths a little more often than that, but not much). He's got non-stop mouth babble pouring out of him all day long. My favorite quote from him lately came a couple of days ago, when he and Cole were having a heart to heart discussion about, of course, He-Man. Cole said, "Do you think He-Man's stronger than me?" Without hesitating, CJ replied, "Heck yeah, Dad. He-Man's freakin' strong!" I laughed my guts out.

Last Friday when we went to Salt Lake to have my milk spun, we realized the lab was only about a mile away from the zoo, so we decided to take CJ for his first zoo adventure. He was really excited to see the elephants and rhinos. He thought they were awesome. But his favorite was the big orangutan. It kept looping a cord around its tree and swinging from it, and Caulder thought it was pretty funny, "Just like King Louie" (from The Jungle Book).

Two Steps Back

After our fantastic day Thursday and a good day Friday, things started going downhill for Tukker again. At about 3 Saturday morning he became very unstable and was having serious trouble keeping his oxygen levels up. They tried suctioning his lungs out but that didn’t help, so they did a quick X-ray and saw that his lungs were looking very hazy.

They were worried that his chylothorax was worsening (they started feedings on Friday), so they reinserted his left chest tube and replaced his right one with a brand new one, so he’s got both tubes back in. He got a gush of fluid out of the left one, but that didn’t seem to make a difference with his breathing. They had to crank his oxygen up to 100% for a few hours, and then finally ended up increasing the pressure on his ventilator from 10 to 20.

Upping the pressure seemed to help, and they were able to lower his oxygen back down. They think his lungs collapsed and that’s why he was struggling so much. Then his temperature and heart rate spiked and they decided he must have another infection coming on, so they added two new antibiotics to the one he was already on to see if that would help him out. They also had to give him another dose of the medicine that paralyzes him because he just wasn’t calming down.

Saturday afternoon they finally got him settled down and a bit more stable, so we’re hoping the antibiotics are working. They took blood cultures as soon as they suspected infection, and right now it’s looking like he has pneumonia. These little ones on ventilators are very susceptible to getting pneumonia because of all the increased junk being pumped into their warm, moist lungs.

It’s very discouraging, especially when we had really hoped Tukker was on the mend and finally showing improvement. It's just scary how quickly these little guys can go downhill. But at least he had some good days that allowed him to get bigger and healthier before this set in, so hopefully his little body will be able to fight it off.

Finally!

After 55 incredibly long days, we finally got to hold Tukker! The cardiologist looked at him tonight and told us he's finally making progress on his pulmonary hypertension. His lungs were looking good enough that they decided we could hold him for the first time. It was a bit of a process, and it took a respiratory therapist and three nurses to maneuver all his tubes and wires, but once we got him situated he settled right in.

They warned us that he might not tolerate it very well since it was his first time, but he did great! His oxygen levels stayed up and his heart rate was stable, so both Cole and I got to take turns holding him. It was amazing. He was even awake at first, so while I held him he was looking around trying to figure out what was going on.

They also told us that the mass in his heart is almost gone, and he hasn't had anything leaking out of his chest tube all day. It was so much good news Cole and I could barely believe it. We're probably not going to be able to sleep tonight because we're so excited.

Our stinking camera battery died before Cole got to hold him, so the nurses used the hospital's camera to take some pics of Cole. As soon as we get those I'll post them, too. I wanted to hurry and post our good news, because I know a lot of you have been worrying about Tukker right along with us. We're so grateful to have so many people who care about our little family. Thanks so much for keeping us in your prayers. They're working!

Keep Everything Crossed...

I have some big news. One of Tukker's chest tubes fell out Tuesday night (they're all slimy and oozy, so sometimes they slip out on their own), and he's had so little draining out of it that his doctor decided not to put it back in. We've been crossing our fingers and toes hoping he won't reaccumulate much fluid in his chest so we can leave it out.

Last night they did an ultrasound on him and there was a tiny bit of fluid on that side, but not enough to worry about. He did end up gaining some weight, though, so we're worried he's getting more in his chest, but his nurse promised she would try really hard to keep everything draining out of his remaining chest tube so they don't have to put the other one back in (she knows how bad I hate those stinking things). With only one chest tube they can move Tukker around more, so it would be really great for his body (and his flat little head!) if he only had one.

His nurse is going to put him on his side for a while and let gravity help drain everything out the remaining tube, and then later she'll be able to switch him to his tummy for a while. He hasn't been able to be on his tummy forever, and he needs that to give his back a rest. Plus it's a good way to get him to turn his head. His neck is really stiff and it's hard to get him to turn it. They try to position it differently as much as they can, but without being able to put him on his tummy it limits their options.

Our other big news is that they're going to start feeding him today. I'm excited, but really nervous. Milk can make the chylothorax worse, and if it starts acting up again I'm going to have to throw myself off the roof. Of course, I'm too lazy to climb all the way up onto the roof of the house, so I'll probably just jump off the cabin roof, which is only about 10 feet high. BUT I figure if I throw myself off into the oak brush I might get gouged to death by the branches, and if that fails the carnivorous ants that infest those trees will slowly, over the course of a few weeks, do me in. But I digress...

They're going to feed Tukker fat free breast milk, because fat is absorbed more easily into the lymphatic system (or something like that), so going the skim route will (hopefully) help keep his feedings from overwhelming the lymph system. Today they're starting with donor milk that's been pasteurized and spun to separate the fat out. Friday Cole and I have to take a batch of my milk up to a lab in SLC to have it spun. Never in my life have I felt such sympathy for dairy cows...

Donate to Nie Nie

I have recently been reminded to stop feeling sorry for myself by my friend Amanda, who posted some info on her blog about a family experiencing a horrendous trial. The couple was in a private plane crash and have been burned horribly. Because they're in for months of recovery, their four children have gone to live with family members while they're in the hospital. As you can imagine, their medical bills will be astronomical. You can get more information about them here http://www.nierecovery.com/ with regular updates here http://blog.cjanerun.com/.

Their family has been asking for people to host online auctions and donate the proceeds to the recovery fund. After contemplating for about a week, I have come to the realization that - because I have no discernible skills - there is absolutely nothing I can make that anyone would ever want to buy. I thought about auctioning off an 8x10 photo of Cole in his yellow 1970s swim trunks (please see the Mexico blog entry for a tasty sample), but was afraid I'd be arrested for distributing illicit material over the web (plus I'm just not sure I'm willing to share my hunk of man flesh with anyone, even for such a good cause). So instead I'm selling blessings by putting a donation link on my blog (look right, below our family pics). If you have some extra cash, send it to their recovery fund. I promise you'll receive blessings for it.