The highest highs and lowest lows

Ah, the wonderful roller coaster. The peaks and valleys.

Unfortunately this will be a short update. It’s been an exhausting week.

We discovered one of the microbes that was in Samuel’s saliva and possibly on his breathing tube: klebsiella. The doctors pulled out Sam’s old tube and re-intubated him. He’s better in some ways. His puffiness comes and goes depending on how often they’re putting fluids into him. His CRP numbers are better, from their highest at over 20, to now around 5 (still considered high); overall his blood numbers are still out of whack. He can’t seem to keep platelets, he’s just churning through them like crazy — he’s getting transfusions pretty much daily. He’s getting additional protein to help absorb some of the fluids, then getting diuretics to help with peeing it out.

This morning was a good day for Samuel: Scott got to help with his bath, even got to hold him while the nurse changed his bedding. He was more alert than he’s been all week. Afterwards, he had a busy/rough day: with the new tube insertion, he had to be bagged and get chest compressions for a while to help him breathe. When I saw him, he was swollen again, not moving much, not opening his eyes; of course he was exhausted.

Sebastien’s getting better. He’s probably 90% his old self now. He’s definitely not as feisty as usual, but he’s returning.

My ‘clean catch’ of breast milk has now tested positive for staph. WTH — shouldn’t I be sick?!!! I’m calling my doctor on Monday to try to get antibiotics.

Spinal part 2

It didn’t work. The doctor wasn’t successful getting the needle inserted, neither was the nurse practitioner. So we don’t know anything. They’re going to wait a couple of days and see if Sam gets better, then do another X-ray on his head to see if the tissue around his brain is still swollen. If so they’ll treat him as if he has meningitis.

It’s hard and frustrating because we want to know if his brain has been affected. We have to just wait.

Better, a bit, but still sick

We still don’t know for sure what happened. On Saturday evening, both boys were fine. Samuel was looking a bit puffy, but he was getting lots of fluids. Everything changed overnight.

On Sunday I called Sebastien’s nurse to let her know Scott was going to try kangaroo care; She said it wasn’t a good day, that Sebastien had been spelling all night and all day so far.

We get to the hospital and go see him first. Sure enough, in our first 10 minutes there, he had constant bradys and low sats. The doctor came over, said Sebastien pranked him, that the nurse told him how often he was spelling, he went over to check on Sebastien…what did Sebastien do? Smiled at him, then crashed. He was immediately put on the ventilator — he’s never been on it since birth, so this was a huge setback for him. All his feeds were removed (he seemed to be constantly spitting up breast milk as well). They started him on  a couple antibiotics as well.

We go over to see Samuel. He looks so swollen. How swollen? His ears no longer had all the crevices that ears typically have; his toes were just tiny numbs at the end of a swollen ball; his eyes were swollen shut; he looked horrible. Samuel was also put on the ventilator. He kept crashing as well on the oscillator (he’d been on it for 25 days, a lot longer than normal). The doctors were also ordering a lot of blood work on him, starting him on lots of antibiotics. Also found out his blood pressure was alarmingly low. They’d been taking his bp from the cuff, but the doctor had them put in an arterial line to take it directly….severely low. So meds to bring that up, mainly dopamine. Stopped all his feeds as well.

Later both boys are put in isolation. That means they’re separated from all other babies, we, the nurses, the doctors all have to do extra scrub-in procedures, wear gloves, wear gowns to go near the babies. They think they have some type of septic infection, not sure what. More tests. Sam’s even more swollen.

We saw them last night. Sebastien was a lot better….he was literally lifting his entire body up, even his head. WHAT BABY DOES THAT?!?!?!?! Seriously, the kid is going to crawl of the NICU. So we could tell he was doing better, all his ventilator settings were at the lowest levels. Samuel was still swollen, just a tiny bit less. He produced an 18g diaper full of pee. Good sign!!!

This morning Scott went to the hospital first thing. Sebastien is off the vent and back on CPAP (good sign!), back to being his feisty self. Still not getting breast milk yet. Samuel is still swollen, getting a tiny bit better.

Found out that one of his test results yesterday had the highest numbers one of the doctors had ever seen — the poor boy was very, very sick. Still don’t know what it is yet. But today his numbers were slightly better. Still high, but lower.

They ran cultures on my breast milk….possibly a staph infection from that. What else would cause both boys to get sick at the same time? I’m really hoping it was just a bad batch. I’m meeting with the lactation consultant today, probably do a special scrub-in and do a manual milk extraction, which they’ll test again. For now, all the milk I’ve brought in so far is going into deep freeze, hoping it can be used later.

Even with all this, they still don’t have a definitive cause of the sickness. Whatever it was/is, Samuel was/is affected much more severely.

Three weeks old

Our boys are three weeks old today!

Sebastien’s still on cruise control. The only real updates we get on him are about his spells and his feeds. The spells are decreasing, the feeds are increasing significantly. He’s also now getting human milk fortifier added to his breast milk. HMF milk is 24 calories, rather than the 20-calorie breast milk. HMF adds calories, protein, vitamins and minerals to breast milk. We’re hoping he’ll soon start getting more and more weaned from the CPAP so he can move to the nasal cannula.

Samuel will start Omegaven tonight. We’re excited about this, hoping to see great results soon. His feeds are also slowly increasing as well. His oscillator settings have been slowly getting decreased…hoping he’ll move to a traditional vent soon. He’s also slowly and steadily gaining weight.