What Superman See's At Dinner

Sorry it's been so long since I've posted. It seems like every time we visit, the update goes something like this:

"How's he doing?"

"Good."

"Any changes?"

"Not really. He's doing well, we've weened the oxygen a little bit and__________ (insert one other small update here)."

So every night we saw progress, but it seemed very gradual. He had a couple "big" moments going from the vapotherm to the nasal canula. But now that I look back at the last post to this one, he's really majorly improved. He's down to almost nothing on the oxygen and his saturation is great. Right now he's on a quarter of a liter which is almost nothing.

We hold him pretty much every night and the latest "big" thing we've been waiting for is a swallow study to see if there were any micro aspirations with his bottle feeding. That was done yesterday morning and it didn't show the formula going into his lungs. So that was good. HOWEVER, it was a bit of a battle yesterday. We spoke with them after the test was done and they said it didn't show any micro aspirations, but that didn't rule it out either because he ate such a small amount--15cc's. Within just a couple of hours after that, one of the doctors called and recommended that we put in a g-tube for feeding that would go though his tummy straight into his stomach. I'm not crazy about him having ANOTHER operation and so I recommended to the doctor, "Why don't you just stick a bottle in his mouth instead and see if he'll eat! Or am I missing something?"

His response was, "Yeah, that's a good idea. We'll try that first." So I went to the hospital that afternoon to speak with our normal doctor as this was all getting really weird, like they were trying to push us out. I could write a novel just on everything that went on yesterday. But the bottom line is they kept saying, "can't, won't, isn't, not strong enough, etc." and I kept reminding them to say, "MAY not get it, MAY not be strong enough, but at least give him a chance."

DON'T EFFING TELL ME CAN'T WHEN YOU HAVEN'T EVEN TRIED!!!!

That made me really mad!! And one lady in particular who acts like a total know-it-all and isn't even a doctor, kept butting in on my conversation with our doctor. I finally had to tell her to shut her trap and to stop talking over me and interjecting every time I went to say something. She's gonna get a piece of my mind when this is all done!!

So we've aggressively pushed for them to put him on a feeding schedule that will increase as he proves that he can tolerate more frequency and higher quantities. But it means that more visits to the hospital. It's not REQUIRED that we are there, but it just seems like if we don't go and stay on top of it, they won't be as vigilant as we'll be and thus they won't increase quantities and decrease the time between as quickly as they should. We do have one nurse, however, that is like a third parent to Seth. She's awesome! I wish we could just clone her and have her be his only nurse all the time. She's definitely as vigilant as we are--sometimes even more so!

I'm attaching the swalllow study. I've never seen an x-ray video. I guess this is what Superman see's when he goes out to eat with others.

Today, I was told that they are preparing his discharge papers. He's still probably a week and a half away from coming home--maybe a few days less, maybe a few more, but at least we can see the light at the end of the tunnel. And a good light--not that one that dead people see.

So there's the latest. And believe me, after all the conversations yesterday, this is the truncated version!

In a Crib

I just noticed that I haven't posted in a while. But pretty much no news is good news. Let's see, there's not really a whole lot to report. He's in a crib, he's up on the 5th floor after moving back and forth a couple of times and he's finally wearing clothes again. He's off his sedation and pain meds, so that's good. But really, he just looks good and seems to be doing better. He's still pretty fragile, so we have to be extremely careful when holding him. But I did get a smile out of him tonight. So that was nice to see.

I'll let the pictures tell the rest of the story.

Doing Better

Seth continues to defy the odds and is improving. We actually got to hold him for the first time in a long time on Tuesday. He's also off the ventilator and now on vapotherm. Yea!! He looks a lot better and has lot some of the swollen weight. So he's not at 8 lbs 15 oz.

He's eating, but still via a tube. And only about 5 cc's. Before he got sick he was at about 60 cc's which is about 2 oz. He seems to be out of the woods for now. They're not keeping him sedated all the time any more, and they are weening him off most of the meds--primarily the pain meds and the sedation medications. He's up a lot. They think it may have to do with narcotic withdrawls. Poor baby addict!! But he doesn't seem to be in pain, so that's good.

Not sure there's much else as far as an update goes. He continues to progress and we are grateful for every day we have with him--especially the good days as have been the case the past week or so. I'l post pictures soon.

Critical But Stable

I went to visit Seth today, as usual. Both last night and today played out pretty much the same. I arrived. He was satting in the 90's. I would put my hand on his head ever so gingerly just to let him know I was there and to show him some "positive" touch. He'd wake up, freak out rebel as only preemie babies know how...breath less, jack up the heart rate, and cause the monitors to beep, bleep, whir and siren. As if they were censoring their own curse words.

Ironically both last night and today the nurse was out on lunch break and another nurse was covering. So they had to call, interrupt her lunch and she'd come to the rescue. Seth would eventually calm down after being suctioned, diaper changed, re-wrapped like a little pig in a blanket and rotated to a different position. After spending 20 minutes satting in the 60's to 70's he'd finally return to the land of 90 just before I would head out each time. All in all it was about an hour adventure each time from start to finish. Makes the time go quickly, that's for sure.

But the other night that I visited, he was alert, looked around and was just calm. It was so nice, and I was so thankful for just that one evening. Just to see him kind of back to his old self.

Okay, I started this hours ago, and now it's late and I'm no longer waxing poetic. So that's it for now. Off to bed.

Surfer Baby

If I took the picture just right, my hair super-imposed on his and he looks like he has blond hair. Kinda funny...

Too Lazy To Write My Own

This was an email Janice sent to a couple of people today. I'm stealing it cause I just feel too lazy to write my own. Some of this will be repeat, but will give you the big picture of the past three weeks and the most recent update to today...

FROM JANICE:

It has been three weeks since Seth first got REALLY sick. Three LONG weeks filled with so many DEEP emotions. I'm sure this email won't even come close to sharing how I've felt. I'm getting teary eyed just typing this. Here's a quick update of our roller coaster ride so far....

Week 1 - The doctors didn't think Seth would make it through the week!...But by the end of the week, he was improving!! The doctor then said Seth was going in the right direction. He was still critical and it may be a slow recovery.

Week 2 - Thursday (10/14) at 4:00 in the morning, I got the first of three calls from the hospital letting us know that Seth's breathing and heart rate were dropping. They did another surgery to put in another chest tube and his breathing and heart rate were going back up, so he was okay....4:50 - Seth had another spell! The doctor was doing another surgery to put in another chest tube!!...5 minutes later - The doctor told us to go to the hospital NOW!!! It didn't look good!! Seth's heart rate was quickly dropping. They didn't think he was gonna make it!...Alex grabbed Lex and Spencer out of bed, put them in the car in their PJs and we were out the door in five minutes racing off to the hospital. (Poor Spencer didn't even have shoes!)

We called(/woke up!) my sister, and Karrie and Bishop Wood on our way there. My sister met us at the hospital and took the boys with her for the day. When we went in and I saw Seth's frail little body and the doctor and a BUNCH of nurses and three respiratory therapists working on him, I honestly didn't know what to think. It didn't look good. Seth didn't look good, his body was a blue/gray color. Tears came rolling down my cheeks as I watched in disbelief. The doctor asked me if Seth had been "baptized" (not a good indication of how things were going!). I told her that our bishop was on his way. Bishop Wood met us there and Alex was able to give Seth a name and a blessing when things were a bit "settled". Alex and I were told that we'll have to take things hour by hour.

That was my longest day at the hospital!...The social worker stopped in and asked if I wanted the hospital priest to come say a prayer. The nurses were somber. Alex and I had a care conference with the doctors and the team. That had to be the most sad meeting in my life! I was an emotional mess that day!!

That evening another doctor performed another surgery to work on the chest tubes again and she switched him back to the traditional ventilator because the oscillator that they put him on that morning wasn't working! I waited outside the NICU for over three hours for this to finish!!

This past week - Seth has still pretty much been sedated. One nurse commented that he is on so much pain and calm medication that he should be in a coma!...I've lost track of how many more chest tube surgeries he has had because his lung repeatedly collapsed!! (He had another (or more?) blood transfusions too.) They've done so much with regards to his chest tubes and his lungs that they've had to do so many x-rays. So many have been done that the radiology department called the doctor to advise her that Seth is having too many x-rays! (I've never looked at so many different chest x-rays in my life!)...One of the main goals for the week was to get Seth off of the ventilator to give his lungs a break. So they had been trying to wean him off that....Sadly, the doctor said that Seth has been through so much since he had been sick with lots and lots of poking with failed IV attempts and surgeries that we also have to work on helping him to trust touch again. Sad, huh?! It's true. When Alex or I would touch him through the incubator, he would squirm thinking that he was gonna get poked again! Oh man, he has been through lots and lots of pain!!

On Wednesday, Seth was taken off the ventilator and put on the vapotherm. This was great news! When I saw him, I cried tears of joy. (The nurse cried with me!) He looked more comfortable. His eyes were open. It was the best that I had seen him all month.

Last night, he wasn't doing so well. His sats were really dropping. So after another x-ray to check his lungs, they had to put a C-pap on him!...Today, he just looks uncomfortable and squirmy again. His body has gotten so used to the calm medication that it doesn't seem to help much anymore! His sats aren't great. =(

Thank you for your continued thoughts and prayers!!

janice

I have some pictures I'll post soon.

Four Good Days

So it's been four good days so far. I hate to get overwhelmingly positive though because as the doctor today told me, "The only thing that happens fast is getting worse."

I went in yesterday and last night. He seemed to be doing well. They are still keeping him very sedated, and the pneumo (air that causes his lung to collapse) tends to accumulate quickly if he moves around.

And so we continue to wait. I'll head in again tonight and will try to post an update a photo or two after that.