Sunshine and Milestones

This post is a fun one!

Over the holidays, Mike, Sol, and I took a plane down south to meet my family and enjoyed 10 days of sunshine and 80 degree weather. We flew into Puerto Rico and spent a couple of days there before flying to the British Virgin Islands for a weeklong cruise on a catamaran. We had an amazing time: Sol got to meet all of his cousins, get rocked to sleep on a boat, and hang out in just his diaper, all day long. He got loved on almost 24 hours a day. It was so nice to get away from all of our doctor’s and therapy appointments for a week. I felt like, for the first time, we could really just enjoy spending time with our son.

What was most exciting for us were all the “firsts” for Sol – not just lifetime firsts, but some pretty big milestones, too!

Lifetime firsts:

  • First time on an airplane. (He really is a champion traveler!)
  • First time on a boat.

Major milestones:

  • First smile (!!)
  • Found and started looking at his left hand
  • Found and started sucking on both hands, including thumbs
  • Started cooing and talking
  • Starting to hold toys, with both hands
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Family photo, with Sol looking for his fist

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First smile

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Sol & Daddy, loving the ocean breeze

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The cool kids (Sol & his Papa)

Eyes On The Prize

On the outside, Sol looks like a regular, albeit small, 3 month old. Despite what his MRI might suggest, he can move all arms and legs, fingers and toes, and can do so fairly symmetrically. The doctors have noticed that his reflexes on the right side are slightly stronger, but he otherwise has good strength all around.

One indicator that something is amiss is when you look at his eyes. They almost always are gazing to the left. I had a couple of rough days in December when I’d convinced myself that he could not see. No, that wouldn’t be the worst thing in the world (heck, the fact that Sol has progressed so far in his first 3 months is a huge blessing!), but the thought of trying to raise a child who would never get to see what his Mama and Daddy looked like or watch a sunrise or head to the movies to see the latest release was a heartbreaking thought. Again, Sol’s therapists and my family have pulled through, reminding me of all the times he moved his eyes when I spoke or squinted when we turned on a light. He can see, it’s just a matter of rewiring his brain so that his eyes are midline and can track in response to touch and sound.

While we’ve been focusing on getting Sol’s eyes to track during his PT and OT appointments, we’ve got some appointments on the horizon that will really focus on improving his eyes. The first is today, a followup with Pediatric Ophthalmology. We’ll be seeing the same Ophthalmologist who did Sol’s vision screen in the NICU. He will focus more on the structure of Sol’s eyes and will let us know if something with Sol’s ocular muscles is causing his gaze to shift to the left. Then, next Tuesday, we will be meeting with a Vision Therapist who will do an evaluation to see if we need to start meeting with her on a regular basis (bringing our count of therapists up to 4!) or if there are some activities our current therapists can begin incorporating into our sessions. Her prescription will help Sol’s eyes coordinate better, so that when he hears or feels something, he will know to look in that direction.

Gazing up and to the left:

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An Update: 2 Months!

Sol celebrated his 2 month birthday this past week. Can you believe it? 2 months?! Part of me feels like it’s flown by while another part of me can’t remember what life was like without him.

On December 11th, we also celebrated Sol being home from the NICU for one whole month. And what a month it’s been: we’ve had visits from Aunt Jenny, Sol’s Nana and Papa, and Sol’s Bebe, Gramps, and Aunt Jenn; we had our first Thanksgiving dinner and decorated our first Christmas tree; and we’ve started our outpatient Physical and Occupational Therapies. We’ve also had follow ups with Neurology, Hematology, and Neonatalogy, as well as 3 regular check ups with our pediatrician, including our 2 month shots (ouch!). All the doctors and therapists seems to agree – Sol is doing great. No sign of seizures, he’s growing (adding 4 pounds on to his birth weight, 3 of which were gained after the NICU), and he has symmetrical strength in his right and left sides.

After I had a couple of days where I was feeling pretty sorry for Sol and over-worrying about our future, I took him to his neurologist for a check up. She was so thrilled with his progress, noting a lack of asymmetry between right and left sides and strength in tummy time. She turned to me and said, “You know, with his injuries, he should be paralyzed on one side, but you know, he doesn’t seem to favor one side over the other. His brain is already rewiring itself!” I immediately stopped feeling sorry for anyone – and stopped worrying, thanked God for all the answered prayers, and really started to enjoy my time with Sol. He’s an amazing kid and I’m so proud to be his Mama.

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Lots Of Work To Do

Outside of the usual newborn-isms (eating, sleeping, not sleeping, fussing, visits to the pediatrician), Sol’s life now involves many, many doctor appointments. On the docket are appointments with neurology, hematology, neonatology, ophthalmology, and physical (PT) and occupational (OT) therapies. Recovering from an infant stroke is not a bumpless path and we are now realizing how much work there is to be done.

This morning, we had our first follow-up with a neonatologist. When we got to the doctor’s office, one of the fellows from the NICU brought us back to the examination room. She was one of our favorites at the NICU, so we were thrilled to see her again!

Sol was very patient while the doctor examined him. We found out that while his weight and head size are only in the 3%, his rate of growth is spot on. The doctor warned us that Sol is in the midst of a growth spurt, so we should be prepared to feed him every 1 1/2 to 2 hours. Yipes!

We filled the doctor in on all of our upcoming appointments, including our weekly therapy appointments. Since Sol’s eyes have a tendency to track only to the left and he has much stronger back muscles than he needs to at this age, she walked us through some activities (laying on a beach ball, infant massage, using toys to help his eyes track to the right) that will help us counter those weaknesses. I’ve been particularly worried about his eyes, unsure of what could be causing them to rest on the left side. She said that it could be neurological, and that the neurologist and the ophthalmologist would pay close attention to his eyes. In any case, she told me not to worry about it, that the exercises we are doing in PT and OT will help until we could pinpoint the issue. Me, not worry? Yeah, right. That’s a tall order for any Mom, let alone a Mom who’s baby is recovering from a stroke. Rather than worry (too much), I’ve promised myself to direct all of my neurotic energy into Sol’s therapy exercises at home and make sure we’re doing as much as we can to move his recovery along the right path.

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Jack Jack Attack

Last week, our baby changed. We went from having to a low key, easy going baby that only cried when he was hungry or needed a diaper change to a little crying machine. Ever see the Incredibles? Remember Baby Jack? That’s exactly what happened to our little man Sol. If you haven’t seen the movie, here’s the clip I’m referring to:

Nothing made the cute little man happy. Our usual routine of checking his diaper, giving him his pacifier, or feeding him just wouldn’t work. What’s worse, he started getting congested. The only thing that made him relax was to lay on his tummy on my chest. The next morning, we were pooped.

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After no sleep and one fussy, tired baby, we packed Sol into the car and headed to the pediatrician. You see, before we’d left the NICU, the neonatalogists warned us that Sol would be susceptible to any viral infections and would likely wind up back in the hospital with pneumonia. With his fussy state and stuffy nose, everything we googled told us that pneumonia was on its way. Danger was looming just around the bend.

You know what they say about googling anything about ailments, right? Don’t do it.

We got to our lovely pediatrician who took one look at Sol and said, “Nope, he’s not sick. He’s being a normal, fussy 6 week old. Stop worrying and read this book.” We did it: we fell into the trap of being neurotic first-time parents!

Needless to say, everything is going quite well with Sol, despite his 6 week-old fussy states. We’re enjoying having Mike’s family in town – Sol loves cuddle time with his Bebe, hanging with his Auntie Jenn, and reading books with Gramps. Sol has also turned into an eating monster and is now eating between 3 and 4 ounces, every 2 to 4 hours. Last week, he was up to 7 pounds, 11 ounces – nearly 2 pounds heavier than his birth weight. We have a follow up appointment tomorrow with the neonatalogist, and I’m anxious to see if he’s gained any more weight!

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