9 weeks

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Good and bad

Sebastien:
Bad: he’s back in his isolette. He’s been cold all day so they have to be cautious and get him warmed up. He’ll have to be in it for at least 24 hours.

Good: he’s now able to try feeds by mouth twice a day. We put 5ml in a bottle and gave to him to see how he’d do. And he did great!!

Samuel:
Bad: he keeps having bradys. All the meds thy would cause his heart rate to slow have been stopped, but it keeps going between a normal rate and low rate. So when he’s upset and it’s already low, it really bottoms out. His breathing and o2 sats have remained steady. Dr today will talk to his doc tomorrow, might get him an EKG.

Good: his blood gases have been good. He’s peeing, he’s doing ok overall.

The Mama Juice:

Good: The final results came back. No growth! Sebastien will be switched over soon; Samuel will get it once he resumes feeds.

A bit better

Things are a bit better again. Yay!

Sam is rocking the vent these days. They haven’t put him back on auto mode yet simply because he’s still too drugged up. They’re weaning his pain meds. His blood numbers are beginning to trend in the right direction. I wouldn’t be surprised though it they don’t resume his feeds for up to two weeks though.

Fingers crossed, and Sebastien’s feeds will begin getting compressed on Friday. They’re going to start with a 2.5 hour compression and go from there. His doctor said that they may try a bit of po feeds. Yay! I worked with him a bit today on his exercises, holding up his head, arm extensions, etc.

The preliminary results came back from my last BM cuture. No growth! Hopefully by the end of the week Sebastien can start getting the momma juice again. And Sam too when he gets to eat again.

More stable

Today we had a meeting with Sam’s doctor. Overnight he got a bit better.

Yesterday was scary because he hadn’t peed all day, so they were talking kidney failure, liver failure. Overnight they put in a catheter, got pee out, he also peed over the catheter. Today’s he’s peed over it as well. Never thought I’d be so happy to see pee!

His ventilator settings have also come down drastically. Yesterday his pressure was really high, his oxygen in the 60s. Today the pressure’s down, his oxygen is back in the 20s.

They’ve also been able to wean a bit of his pain medication.

His blood numbers are still wacky so they’re tweaking his TPN fluids, adding protein, potassium, etc.

There’s still no gas pattern in his belly, it’s still inflamed and not moving.

From here on out when doctors refer to him, he’ll always be the baby who had NEC at 8 weeks (in addition to the 350g baby). This will help ensure he’s handled with more caution when it comes to feeding.

Right now we just wait. I bluntly asked the doctor if he was in danger of imminent demise. Funny how I don’t have a problem using that term anymore–I’m so hardened to it now. No danger,  just wait it out, see if he gets better.

So we wait.

More consistency please

Sam’s still doing ok. Just ok. He’s been fairly stable today, but he’s still fighting something.

He had a rough night last night, heart rate dropped to the 40s, oxygen saturation to the 20s. His nursed described him as ‘black’ in color. His pain medication wore off and he didn’t get his next dose quick enough; he ended up fighting the vent, clamping down on the tube. He’s now on a drip for the pain medication so that the dose stays continuous. Sam’s hanging in; his belly is still swollen, but it’s actually come down a bit in size.

He got a new PICC line today; his old surgical line is being removed sometime tonight.

Just a bit ago, before I left the hospital, he started sneezing, he clamped on the vent again, bradied again. He’s now getting another relaxation medication to help him remain sedated while he’s fighting this.

The biggest event today wasn’t directly related to Sam or Sebastien. I talked to the charge nurse at length today expressing my concern over Sam’s care. He’s in the same room as Sebastien now, which I love, but only two of his primary nurses made the switch with him. So for the last two weeks or so, he’s had a different nurse every day/night (his original 2 primaries only work Friday-Sunday). The merry-go-round of nurses has been Sebastien’s norm, but for Sam, it’s unnerving. Especially right now. He needs stability, consistency, people who know him, know when he’s comfortable, know when he’s not. We need stability so that we can trust his care, trust that he’s in good hands, so that we can sleep at night. This situation will be taken care of now.

The other thing we discussed was the phones. We’re supposed to be able to call or visit 23 hours a day. In the last 3 days, twice now we haven’t been able to get through. For some reason when the secretary isn’t at the main desk overnight, the phones haven’t been correctly routed. So the phone just rings and rings and rings. To put it bluntly, when this happened last night, we were beyond furious. To get around it, I decided to try the main hospital number and ask to be connected to the NICU. It worked. But then we found out that Sam was in the middle of the fit, that “a number of people are at his bedside. He’s getting bagged.” Very upset again.

 

 

An update

Well, some good news. Sam is stable.

His belly is red and swollen, but there’s been no perforations. They’ve reduced his x-rays from every few hours to now being every 12 hours. No more blood is coming out of his replogal. He’s still on a ton of medications, still getting blood products like crazy. One of his blood samples did test positive for bacteria — still waiting to find out what.

I had a nice visit with him this evening. He was on his side, facing away from me during his hands-on. I reached in to take his hand, talk to him. He opened his eyes and I could see him straining to look over towards my voice. Once the nurses placed him on his belly and were done with everything I was able to face him directly, give him preemie massage, rub his back. He watched me the entire time. I could tell he loved the foot massages because everytime I released his foot, he stretched it out towards my hand again. Oh I do love that little boy.

He is still incredibly sick. Compared to last time though, he looks fantastic. It was nice to see him alert this evening. Even his doctors and nurses have all said that even with everything he has happening right now, he looks great.

Another thing he’s also dealing with, forgot to write about this earlier, is pulmonary hypertension. I haven’t researched this too much yet since we got sidetracked with NEC. They discovered the hypertension on Thursday during one of his echos checking on his holey heart. All three holes are still there, no changes.

I’ll be done with the latest round of antibiotics on Tuesday. I talked to his doctors today, asked what we should do. If the milk tests clean, great. But what happens if it gets infected again? How will we know? We’re going to explore this more next week: testing weekly, biweekly, whatever they think is safe. I’m just paranoid at the idea that I could make him sick in the future. Even Sebastien — he’s doing fine on formula. If we switch him to breast milk and he gets sick, that will be difficult to live with. The doctors are saying that any BM is better than none, so it’s better to try. I’m less concerned about Sebastien having an issue, more worried about Samuel. When they want to fortify the BM later, will he get sick again? How do we know if he has an intolerance to something? We just wont know, can’t know until we try. But damn, I don’t want to have several more rounds of sickness, taking steps back for several weeks each time.

Sebastien’s doing well. He’s in an open air crib, he’s maintaining his body temperature. His feeding tube was pulled up into his stomach. They’re working to wean the humidity down on the cannula. We’re hopeful he’ll be home by his due date. But he still has his huge PDA. I asked his doctor yesterday what happens if he’s 38 weeks or so, taking bottles, no cannula, everything’s ready for him to go home but he still has that hole. She doesn’t know. Great.