Mama Guilt, Be Gone!


Flashback to one year ago

All Moms struggle with guilt. Whether its choosing to go back to work a few weeks after her baby is born or wondering if she’s feeding her kids the right foods or any number of other situations, it’s a common feeling among all mothers. In my particular situation, I spent the first 10 months of Sol’s life feeling guilty that something I did (or didn’t do) caused Sol’s stroke. Again, this is a common source of guilt among Moms of stroke babies, and in 99% of the cases, the stroke was the result of a random mutation or a clot that no one saw coming. But, I always wondered if maybe I stopped running a little earlier or if I had passed up that occasional Starbucks Chai Latte, Sol’s situation would have been different.

Thankfully, right before we left DC, my feelings of guilt were put to rest.

After 10 months of choosing not to look at Sol’s MRI out of pure fear for what it looked like, I decided I would feel better knowing what it looked like. I asked Dr. Newport, the director of Georgetown University’s Center for Neuroplasticity, a woman who I greatly admire and trust, to view his MRIs and walk me through them.

Those 10 months of not knowing what those images looked like may have worked in my favor: based on what the NICU doctors had told us, I imagined the absolute worst – a sliver of healthy brain tissue and not much else. Not so much. I assure you, his MRI is still scary to look at. I learned that he had at least three strokes, one in the left MCA (ischemic) and one in left and right ACA (hemorrhagic), and these strokes were massive, completely destroying brain cells in these areas. The MRI also showed a spot in the right MCA, which could have been a fourth stroke or the result of blood in his brain after the brain injury.

Sounds like a lot, right? It is… BUT what’s promising is that, through the areas of research that Dr. Newport and her team are commanding, doctors are finding that if one area of an infant’s brain is injured, other areas on the other side of the brain can take over. For example, since the left MCA was impacted (this houses the speech centers, for example), the right MCA can take over those duties. Because both the right and left ACAs, the areas that control executive functioning (think attention and organization skills) were affected, we are unsure how his brain will rewire to compensate for these areas. In fact, we’re unsure how his brain will rewire altogether. Because the left side of his brain bore the brunt of the damage, we DO know that his right side will always be weaker. Other than that, how well he continues to recover is left up to God, good luck, therapy, and Sol’s will and determination. He could very well be wheelchair-bound or never gain use of his right hand, but watching him work hard on standing in therapy and seeing him concentrate to bring his right hand to a toy tells me that he will make strides in all areas.

And, going back to that talk of guilt, Dr. Newport said that, based on his MRIs, it was obvious that nothing I did during pregnancy and nothing that the doctors did during delivery caused Sol’s stroke. It was most definitely a clot or multiple clots that broke off from the placenta during delivery – nothing more, nothing less.

While this news doesn’t make Solly’s situation any better, it does put my mind at ease and allows me to focus more on creating the best environment for his recovery – and that WILL help him improve.

The Weekly Roundup: Luck, Leaps & Bounds

Whew, this was one busy week. Sol and I had one appointment every single day, and two on Tuesday. By the time we got to Thursday evening, we were both beat.

Here’s how the week went:
Monday: We had our weekly PT session with Miss Laura. Because Sol was arching his back much more than usual, Laura suggested we chat with Sol’s neonatologist to see if he was having reflux. We got some good stretching in and worked on holding toys with both hands. The latter helps Sol organize himself and it’s our hope that by having him hold a toy in the middle of his body with both hands, his eyes will also begin to shift to midline as well. (We’ve already seen this happen once or twice.)

Tuesday: We had two appointments on Tuesday. Our first appointment was an evaluation with a Vision Therapist, Marie. Marie came to the house and sat and chatted with me and Sol. She watched how Sol interacted with me, had him hold a rattle, and then decided that she would come work with him twice a month. From what I understand, she will have exercises that will help support Sol’s functional vision, something that will develop as he gets older.

Later in the afternoon, we drove up to Sol’s neonatologist for his follow up. We’d last seen her in November, just a couple of weeks after Sol was discharged from the hospital. After his measurements were taken – 11.8 pounds and 24 inches, she watched him in tummy time, saw him put his fists in his mouth, and heard him chatter. She told us that he was growing by leaps and bounds and couldn’t believe how much he’d changed since November. Woo!

Wednesday: Wednesday was another big day for us: our follow up with cardiology. Overshadowed by his stroke and bleeds, Sol was also born with an ASD, a small hole in his heart. They’d also thought they saw a clot forming just below his heart, and wanted to check in on both. I held Sol after they checked his weight (now 12 pounds) and took his vitals, while a tech ran his echocardiogram. Afterwards, I chitchatted with his cardiologist, who I immediately fell in love with. Both of the heart issues (possible clot and ASD) had resolved themselves – yippee! We were officially discharged from Cardiology – no more follow up required. His cardiologist told me how well he was doing and when I expressed my concern over his vision and some of the side effects of the stroke, she stopped me in my tracks and reminded me of my favorite word – neuroplasticity. She also said how lucky we are, that he is miraculous. His brain has and will continue to do amazing things in spite of the injury, and I need to just keep working at it.

Thursday: We ended our week on a light note with Sol’s OT appointment. Lots of stretching and playing with toys was our focus, and our homework included a continuing focus on engaging Sol’s right hand as well as encouraging him to flatten his hands during tummy time. Easy peasy, right?

After our crazy week, Sol and I boarded a plane with his Nana to spend a few days in sunny Tucson. Our plan is to soak up some warm sun rays and enjoy some much needed family time! Next week is our meeting with a vision specialist from UMD who will help us assess Sol’s functional vision and who will help us come up with a plan to continue to focus on and improve his sight.

Naked time is the best!2015/01/img_1648.jpg

Exhausted. It’s been a busy week!2015/01/img_1633.jpg

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

Family photo, with Sol looking for his fist


First smile


Sol & Daddy, loving the ocean breeze


The cool kids (Sol & his Papa)

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.