Every few days or so, I feel down in the dumps. There’s really no rhyme or reason why this happens, no news of doom and gloom or a backwards slide in progress – it just happens. Today is one of those days.

We had a good day in the NICU even though Sol was also wearing his grumpy pants. Here’s the report:
– Sol continues to be stable with the wean off of Phenobarb. They lowered his dose to 1 mg/kg yesterday and, as long as everything remains status quo, they will take him off of it completely in 2 days.
– No change in respiratory levels overnight. He’s generally in the 87 – 97% range, and the doctor says that when his levels are 95% and up when he’s in a deep sleep, they will wean him off of oxygen once again.
– We got a clean bill of health for his vision exam. Woo hoo!

Michelle was out sick today, so we met with Hilary, who will be doing his outpatient OT. She gave us some helpful hints and exercises to try when we are visiting with Sol, and said he has great movement and alertness.

For feeding, we met with Jeanette who works on Tuesdays. She was pleased by his suck and swallow reflexes and was able to give him 2ml of milk by mouth. He is still having trouble coordinating the swallow and breathe part of feeding, so we are practicing with small increments of milk. While we think the side effects of the Phenobarb may still be hindering his coordination, I think this slow progress may have fueled my sense of discouragement today. I know this is only the third time he’s been fed by mouth since we got to Georgetown, but it feels like it’s taking Sol much longer to catch on to the feeding lesson. (I know, I need to be patient!) Melissa will be working with us tomorrow on getting Sol more practice, so hopefully we’ll see some more progress then.

To compensate for my less than positive mood today, I present you with a photo of Sol doing an impersonation of The Grinch:

Chatting with Hilary:

And hanging with Dad:

Today was a pretty good day at the NICU. We made lots of progress and had a nice long (5 hour) visit.

Here’s a quick run through of the updates:
– Sol passed his hearing screen. His vision test will likely be tomorrow. These are just a part of regular tests that all newborns go through, but I’m so happy that his hearing was not impacted by the stroke.
– Encouraged by his progress over the past couple of days, the neurologist has decided to decrease Sol’s dose of Phenobarb by another third. This will happen tomorrow morning, so we’ll see the impact towards the end of the week (it takes three days for this drug to completely leave the body). Given how active Sol has already become by the initial dose reduction, I’m really anxious to the effects of this next decrease.
– The doctors are continuing to keep him on light oxygen support. This isn’t a huge deal, but it would be nice to take him off of it altogether. Hopefully, he’ll breathe a little deeper as they continue to wean him off of the Phenobarb.

Mom (Nana) and I got to the NICU this morning to find a sleeping baby, so I got him out of his bed and rocked him until Michelle came by for Occupational Therapy. I woke him up just a few minutes before she arrived and she was thrilled to see how much more alert and responsive he was compared to Friday. After we went through his exercises, she examined his head and decided that because he tends to roll his head to the left quite often, he needs to temporarily wear a tortle to help keep his head from becoming flat on one side. Basically, other than being a fun word to say, a tortle is just a soft cap with extra padding on one side to discourage movement to that side. He’ll wear it for a couple of hours a day.

Later in the afternoon, Melissa stopped by to work with Sol on feeding. She offered him a small bottle and was encouraged by how quickly he latched and started sucking. He’s still working on coordinating swallowing and breathing, so he only had about 3ml from the bottle before she stopped him. This was an improvement from his last bottle feeding! Melissa will stop by each day this week to continue to work on feeding and, in the meantime, we’ll keep working with the pacifier, which he has grown to love.

The rest of the day was filled with snuggles, rocking with Nana, and giggles over some silly faces that Sol made. It was a great way to start the week.

These were the words of the rounding doctor this morning: “He’s good!” No updates overnight – Sol’s on a good path right now. The doctor said they would touch base with neurology on Monday morning to see if we can take his Phenobarb levels down another notch, which means we’ll see even more activity from Sol. He also kept his body temps in a normal range overnight, so while we were visiting, he was moved to a regular crib without heat support.

Mike and I found that we had a very active baby when we arrived. He stayed awake for over two hours! We spent a little time doing his OT exercises and then over an hour working with the pacifier. Sol liked his pacifier so much today that he continued to suck on it while Mike read “Go Dog, Go” and “Brown Bear, Brown Bear What Do You See?” and he even tracked for it twice when I offered it to him with a little milk.

All in all, a very, very good day here in the NICU. I liked the wide awake baby that we saw today and am anxious for him to start working with Melissa again tomorrow on feeding.

It’s a nice feeling to have a baby in stable condition in the NICU. The doctors’ rounds are a breeze and there’s no need to wake up in a panic and call the nurse to make sure Sol made it through the night with no episodes.

Here are today’s updates:
– Sol’s oxygen levels dipped just below normal overnight, so they put him back on a 1L 21% flow to give him a little boost. The doctor on duty seemed surprised that this level was all he needed to stay happy and suggested that if the reduced levels of Phenobarb don’t do the trick, maybe a little caffeine would help. Caffeine? Seems like an appropriate fix considering my love for Pepsi and Starbucks.
– The levels of Phenobarb have been cut by a third, so we should start to see a more lively baby over the next few days.
– Sol no longer has heat support and his body temperature has stabilized, so he’ll likely be moving to a new bed soon.

While I was there today, we worked on his exercises from Occupational Therapy and also played with the pacifier a bit. He was a champ for everything. He also got to visit with his Nana and Papa for a while and showed Nana that he could do a Hawaiian punch! (Sadly, I didn’t have my camera ready for that one!)

His nurse noted that he seemed much more awake today and was making a little more noise than usual – a good thing! We’ll have one more day of practice and then we’ll continue working on sucking & swallowing with Melissa, his speech therapist, on Monday. Given his eagerness to have his pacifier today, I’d say we have a good chance of figuring out how to eat from the bottle soon.

Sol was bright eyed and bushy tailed when I arrived to the NICU this morning. His nurse said that he’d been awake for an hour and had been very alert and looking around – very much in the same state as I’d left him the day before. After the doctors finished their rounds, the neonatologist stopped by to comment on how much his eyes were shining this morning. Apparently, I wasn’t the only one who’d noticed!

The big update for Sol’s progress today is that they were trying him without any respiratory support. We removed his oxygen shortly after I arrived and his levels looked great while I was there. I’m praying that the levels continue to remain high so he can stay off of oxygen permanently (one of the steps to getting him home).

Today, Mike and I also had a sit-down with the team of specialists working with Sol. One piece of news from this meeting was determining, with some level of certainty, that the origin of the blood clot that caused Sol’s stroke was most likely the placenta. From my research, this is not unusual though there isn’t any sort of explanation why this event takes place.

The other piece of really, really good news (the biggest news of the meeting) is that the doctors agreed to begin weaning Sol off of the Phenobarb. They agreed that his seizure activity is now stable enough and the most important thing now is to focus on getting him to wake up, learn how to feed from a bottle, and focus on occupational therapy.

While doctors say it could take another 2-3 weeks before he’s eating comfortably and can come home, I’m really hopeful that by removing the sleep-inducing Phenobarb, he’ll really start figuring things out next week. The neonatologist is optimistic based on his work with the pacifier and eating 1ml from a bottle yesterday. We’ll continue to practice with the pacifier over the weekend – practice makes perfect!