Sol showed us his fussy face and greeted his two week birthday with open arms and eyes today as we had one of our most productive days so far.

The report from his nurse:
– Sol is still on low level heat. His body temperature is around 36.3 – 36.5 and needs to stabilize between 36.5 and 37.5 before he’s moved to a big boy crib. Not a big deal – I would imagine this shift will happen in the next day or two. (Heck, I’d be cold too if heat lamps were taken away from me !)
– The levels of Phenobarb in his system are now normal, so no further increases on dosage. This is good as we expect Sol to be less drowsy once he gets used to the current level.
– He will be moving from a head ultrasound every other day to once a week.
– No reads on the most recent round of EEGs, but they expect no changes.

Now for the really good stuff:
Michelle, Sol’s Occupational Therapist stopped by at 11:30am for a half an hour session. Sol was very sleepy, so we started with easy arm stretches and leg cycles. He started to wake up when Michelle sat him up, a position that works on his neck muscles. Sol showed us his strength by trying to hold his head up and then promptly turned into Mr. Fussy – his lunchtime is at noon and he was letting us know that he was hungry! Given his constant drowsy state, we love hearing a good cry. Michelle then had Sol work on tummy time by laying him against my chest. He turned his head (a great response!) and nestled right against me. Throughout the session, he independently moved his arms and legs and resisted some of the movements we were putting him through, all good signs as he was showing us his strength and coordination.

At noon, Melissa stopped by to work on his sucking and feeding ability. Because he was so awake when she arrived, she decided to try feeding him from a bottle. At her prompt, Sol opened his mouth to accept the bottle and showed us that he could suck and swallow, all while keeping his oxygen and heart rate levels constant. This was great progress, particularly since he’d been fed via a feeding tube for the past 10 days. While he never quite found the cadence of breathe, suck, swallow (it was more along the lines of suck three times, then swallow four), and only ate about 1ml from the bottle, the fact that his suck and swallow reflexes are intact and he’s trying to figure out how to use them is extremely reassuring. Melissa is super committed to working with Sol to find the right approach to feeding. We are so grateful for both her and Michelle’s help while Sol is at Georgetown. They are awesome.

The final 15 minutes or so with Sol were the most exciting of my day. I held Sol as he received the rest of his lunch via the feeding tube, and for the first time, his eyes shone bright and he looked around the NICU, often focusing on me and his Nana. His eyes tend to shift to the left when awake, so this movement and the light behind his eyes was a huge win for the day. I think he liked the bottle and hope that this new stimulation will continue to excite Sol.

As if to mimic the grey and rainy DC weather, today’s updates are not quite so stellar.

I’ll start with the good:
– Sol’s EEG report came back with no sign of seizures. As expected, the episodes that nurses were reporting as possible seizure activity were not, in fact seizures. The leads on his head came off today, which means it’s much easier to get him out of bed to hold him.
– Both anti-seizure medications have switched to oral doses, so his PICC (IV) line will be removed today.
– His feeds are continuing to increase, now from 50ml to 55ml every three hours.
– Melissa from Speech Therapy stopped by to work on getting Sol to suck on a pacifier again, and we had some success there.
– Because he is being removed from most machines, we are able to bring him clothes from home, so in upcoming photos, he will be clothed!

And for the not so good:
– The EEG also continued to show signs of suppressed brain activity on the left side. I’m a bit bummed about this one as we were seeing increased activity while we were visiting.
– While he was off of respiratory support when Mom and I got there, because his oxygen levels started to dip below 90, they put him back on oxygen today.
– They increased the level of Phenobarbital that he is receiving because he wasn’t keeping as much in his system as they would like. Sol is currently on two anti-seizure drugs: Phenobarbital and Keppra. Ideally, we will eventually wean him off of the Phenobarb because a major side effect is drowsiness. As such, this increased level could account for the suppressed brain activity, as well as his extreme level of sleepiness and the need for more oxygen support.
– We also received the results of his most recent head ultrasound. It continued to show a decrease in brain swelling and midline shift, but also showed the formation of cysts in the areas of his brain that would impact motor skills. This is extremely common with the type of brain injury Sol has so I wasn’t surprised to hear this news, but it is still hard to take as it means we could be dealing with cerebral palsy in the future. Of course, this is not a certain and we’re already working with speech and occupational therapy, which will help improve any sort of hurdle that we could be facing.

All in all, not an entirely terrible day, but I am having trouble remaining optimistic given the results of his head ultrasound and the level of drowsiness Sol was experiencing. On Friday, we will have a sit down with the team of specialists working with Sol to answer any questions we still have and to begin to work out a plan for Sol’s development. In the short term, however, we will be heavily focusing on getting Sol to suck from a bottle so he can come home.

We have lots of great things to report today.

Most importantly, Sol is no longer on any respiratory support. Yay! They removed all oxygen at 1pm today, after we’d had a couple of therapy sessions. We hope that he will continue to breathe easily on his own overnight and in the days to come so this extra support is no longer needed.

The other great news is that as Solomon goes up on his feed levels (he’s working up from 40ml at each feeding to 50ml), he will no longer need IV supplements. Over the next couple of days, the staff will try moving him to oral anti-seizure medications (currently given via IV) so we can also say goodbye to IVs as well.

Today, Mike and I met with Michelle from Occupational Therapy so she could teach us hands-on techniques to strengthen Sol’s muscles and range of motion. We also discussed some ways to try getting Sol to track right with his eyes. At the end of our session, we worked on tummy time, which Sol didn’t like at all. I think he’ll like it much better when he’s at home and has cute puppies to watch.

Melissa with Speech Therapy then met with us to do Sol’s full evaluation. She started out by testing his sucking reflexes, which showed us he was up for the challenge. She then tried getting him to suck on a pacifier by first dipping it into milk – success! The next step is to try a bottle, which we’ll be able to do once he’s off of oxygen for 24 hours. This could happen as soon as tomorrow. One thing that I noticed was while Sol sucked on his pacifier, he started to move his eyes around! He seems to like this new stimulation.

The only speed bump we hit today was learning that Sol showed signs of a seizure last night. Since he was hooked up to the EEG, the neurologist will be able to determine if these signs were in fact correlated to a seizure. The last time he was on the EEG, we had similar reports from the nurses, but later found those activities were not related to seizures, so we hope this round will have a similar result.

Tomorrow will call for another head ultrasound, the results of the EEG, and more Speech and Occupational Therapy. Let’s keep these good days coming!