Sweet Bea

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For some time, I’ve wanted to write something about having a baby after a having perinatal stroke survivor, but even nine months after having Solly’s little sister, I am still struggling to wrap my mind around the experience and put it into words. Deciding to try and get pregnant after having Solly was just one hurdle: the nine months that followed was a long stretch of managing self-blame, worry, and anxiety while trying to relax and “enjoy” the pregnancy. Oh, and on top of that, I was still taking Solomon to endless appointments, researching treatments for him, and planning alternative therapies for the year.

After Solly was born, I couldn’t imagine having another child. Even though I knew that nothing I did caused his strokes, I couldn’t help but blame myself for what happened to him at birth. My body was supposed to keep him safe, but instead it let something awful happen to him. How the heck could I risk this happening again?

But, as Solly began to grow and thrive, Mike and I knew that we wanted to add more love to our family and we decided to rely on faith and medicine to try and give him a sibling as quickly as possible. After interviewing several OB/GYNs (mad love to my sister for connecting us with the right one) and having extensive tests run which found that I have multiple clotting disorders, we were on our way to baby number two in a high-risk pregnancy. I was on extra plant-based folate, a daily baby aspirin, and a daily shot of Lovenox, all steps to reverse any potential clots. At first, we saw the doctor every four weeks, then after 20 weeks, it was every two weeks, and then at 33 weeks, we were seen twice a week with ultrasounds each time to make sure the baby was still growing. I had a lot of great support, especially from other Moms who’d had a baby after a stroke survivor, however at each appointment, I was convinced the doctor would find something wrong or wouldn’t be able to find a heartbeat. (I think Beatrix caught wind of my anxiety, because during an ultrasound at 14 weeks, she threw her hand above her head and gave us a thumbs up.)

For the two months leading up to Bea’s birth, I basically lived in a yoga studio, attending several prenatal yoga classes each week because it was the only time my mind could relax and I felt like I could connect with the baby growing in my belly. Aside from the month when Solly was in the NICU, it was the most anxiety-filled time of my life.

At 38 weeks along, we went in for a scheduled cesarean. I pumped myself up: I was ready to have our little girl. I was in great spirits the morning of, despite Solly having kept both Mike and I up most of the night before. I was still in great spirits as we registered for our hospital stay and as the nurse brought us up to the pre-op area and even as the anesthesiologist walked us through possible complications (oh, you know, just possible paralyzation from the mid-back down, nbd) that could arise with the combination of my clotting disorders and the spinal block needed for the c-section.

When the nurses started to ask about Solomon, though, and our birthing experience with our first child, I lost it. I couldn’t stop the tears from flowing. At that point, I realized how much I had been blaming myself for Solly’s strokes and how much I hadn’t dealt with that guilt.

For any Mama reading this who’s struggling while pregnant after having a perinatal stroke survivor, here’s some advice from someone who’s been through the experience:

  1. Find a supportive obstetrician. I cannot stress this enough. Our doctor was calm throughout our pregnancy and never made a big deal over anything, which helped keep my anxiety in check. Before we went back for the cesarean, he prayed with us, which is exactly what I needed in the moment, and he even joked with us a bit during the procedure, which is exactly what I needed in THAT moment. Do your research, interview, and go with the doctor that feels right to you. Don’t settle.
  2. Find emotional support. If you aren’t getting the support you need, find a good therapist to help you sort through your emotions. I didn’t do this until after Bea was born (because only weirdos get therapy, right?) and it’s my one regret of the pregnancy. I think I would have been able to relax and enjoy the pregnancy had I seen a therapist during it.
  3. Get advice from other Mamas who’ve been in your shoes. A Facebook group that was immensely for me was Pregnancy After Perinatal Stroke.
  4. Work it out. Yoga or any other exercise will help keep your mind in a good place.
  5. When it’s time to give birth, tell the hospital staff about your previous experience. Because I broke down when telling the nurses about our birth experience with Sol, they filled in any staff member who would work with us during our hospital stay. There was never any question if I got paranoid about something Bea was doing or not doing and every staff member approached us with lots of compassion.

Despite having nine months full of anxiety and a slight breakdown before giving birth to her, Bea’s birth ended up being easy with no complications. We couldn’t be happier with the bond that’s developing between Solly and Bea and we look forward to watching them help each other grow and thrive.

 

The Secret Life of Special Needs Moms

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Y’all, being a Special Needs Mom is unique. It’s hard. It’s exhausting. It’s rewarding in its own way. It’s special. 

To the outside world, it may seem like we – special needs parents – are steadfast, strong, and unbreakable. We speak up for our kids, we never back down, and we have an infinite amount of patience. But, behind closed doors, we feel weak. We question ourselves. Tears flow easily. We always feel guilty. 

Over the past three years, I have befriended so many Mamas and Dads just like us on Facebook, Instagram, and WordPress, and my feeds are peppered with questions and statements like:

My son is doing this strange thing with his arm. Here’s a video – is it a seizure?

My child hasn’t pooped in days. Is this normal?

He’s not drinking again. Do I take him in?

Well, another trip to the ER. Let’s hope we get to go home tonight.

Just found out my daughter has to have double hip surgery. I’m so nervous!

Doctors are saying my infant son’s head isn’t growing. I’m super paranoid about it and am now measuring it every day. Is this normal?

I’m just so tired and no one seems to support me or understand what I’m going through. 

This is our norm. It’s what we face every day. It’s our secret little world, one that only special needs parents “get”. Despite what many parents of typical children say, no, our journey is not like theirs. 

Time can make the special needs journey easier. Eventually, you find strength in yourself to stand up to a therapist who doesn’t believe in your child. You change doctors who don’t have the same philosophies as you without feeling guilt. You start seeing your child as your child and not as a diagnosis.

One thing that I have struggled with since day one are stares and comments as we venture out into the public. When Solly was eight months old, I remember feeling hurt when someone commented that they thought he was only 3 or 4 months old because of his gross motor delay. I wrote about another time when a cashier mentioned that Solly reminded her of her grandson who had CP and autism and was institutionalized. As Solly gets older and his disability becomes more obvious, the stares and whispers of strangers are increasing. 

This used to keep me holed up at home. Just the thought of the possibility of an off-color remark about my son turned me into a recluse.  But in the past year, things have started to change. Yes, for many reasons, it’s still difficult for us to get out and enjoy things as typical families would – family gatherings, neighborhood barbecues, trips to the park. But we are starting to enjoy adventures like these in our own way. 

A few weekends ago, we headed out to the Cheekwood Estate and Gardens. They’d recently opened up Cheekwood Harvest, which had been on my list of things to do in Nashville. When we got there, we made a beeline for the pumpkin patch. I pulled Solly out of the stroller and plopped him down on his feet, keeping him steady with my hands. I showed him the pumpkin house, and all the pumpkins in the pumpkin patch – big, little, white, green, orange. As I pointed out all the pumpkins, I slid my hands under his arms and whispered “kick, kick, Solly”. He began taking steps with my support and together we walked the length of the pumpkin patch. I’m sure we got loads of looks and stares – Solly sporting his AFO and SWASH braces among the perfectly dressed toddlers of Nashville, all decked out for their Fall photos. But in that moment, I could have cared less. My son was taking assisted steps and checking out the pumpkins with me. For once, my secret special needs world was not-so-secret anymore and I couldn’t be prouder of it.

Walking through the pumpkin patch

Three Years!

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Happiest of Birthdays to our warrior!

Where does the time go? Seriously, I cannot believe that three years ago today, Mr. Solly came into our lives.  We couldn’t be more proud of all that this 3 year old has accomplished in his lifetime and can’t wait to see where this next year takes him.

Happy Birthday, Sol the Man!

Sister, Solly, and the big ol’ brace

Growing Past Panic Mode

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Trigger warning: if you can’t stomach conversations about vomit, skip this post and wait for the next one!

A couple of weeks ago, I hit the panic button. It was the middle of the night, I woke up with a start. It took a few seconds to register, but I definitely heard something, someone was coughing.

At first, I thought it was Bea trying to wake me up for her typical nighttime feeding, but I quickly realized it was something more serious than that. Solly was coughing, choking, upstairs in his bedroom. I sprinted upstairs to find him vomiting and choking in his crib. Normally, he’d be able to roll over and clear his airways, but ever since he had SPML surgery, he’d been sleeping in a fairly heavy duty hip support that is difficult to roll in. I sat him up and patted his back until he stopped throwing up and then took him downstairs to get cleaned up.

I thought he seemed somewhat disoriented and was jerkily moving his arms and legs. I jumped to the worst-case conclusion: seizure. To our knowledge, Solly has not had a seizure since he was in the NICU, and even while he was there, I never witnessed him having one. However, from the nurse’s notes, I knew that his seizures presented with jerking movements in his right arm and leg, and I’d also read from other parents that their children often vomited after having a seizure. We’ve kept him on Keppra, an anti-seizure medication, out of precaution since his EEG’s had almost always been abnormal. An EEG just three weeks prior to this evening showed an improvement in his brain activity, so it seemed like we were moving in the right direction to begin thinking about weaning him off of Keppra. However, at this point, it seemed that these hopes had gone down the drain.

We gave Solly his rescue seizure meds and a quick bath and, because it was 1 a.m. at this point and there would be no one at his neurologist’s clinic to give advice, I put Solly in the car and took him to the E.R. in case he had another seizure.

Once I got him to the E.R., I had my regular Solly back. Several doctors examined him and couldn’t find a reason why he would have a breakthrough seizure, other than possibly being fatigued from our recent vacation. Typically after a seizure, children will be very tired and sleep for quite a while. Solly was awake, playing with me in the E.R., and very much the happy-go-lucky little kid that he is day in and day out. It didn’t SEEM like he had a seizure. The doctors felt that we could go home, increase his dose of Keppra as a precaution, and follow up with his neurologist the next day if needed.

In the days following our E.R. visit, I couldn’t quite wrap my head around the event. If it was a seizure, was it just a random event? Did we need to increase his medications and follow up with his neurologist? Solly has some extra sensory needs and often needs to chew on things as a result. I considered another scenario and thought maybe he woke up in the middle of the night and started putting his hands in his mouth, accidentally making himself vomit. But even that explanation didn’t sit well with me.

Six days later, Solly threw up again. Twice. This time, it was in the evening, my parents were with us, and we all witnessed it. Nothing made him throw up. He didn’t have a fever, he wasn’t sick, he didn’t have a seizure and he didn’t have his hands in his mouth. He just threw up.

And then it hit me. In the days leading up to Solly’s nighttime event, he’d been eating more. Like, a lot more. What if these vomiting episodes had to do with motility?

Coincidentally, just days later, we had our first appointment with a new feeding therapist. She confirmed it: when anyone goes through a major growth spurt, sometimes esophageal muscles have trouble keeping up and coordinating. This is especially the case with kiddos that have CP. Some vomiting is common with a growth spurt.

So, there you have it. Our Solly is finally going through a major growth spurt! In the last week, we’ve even had to buy him bigger pants and pajamas. Eating and growing has always been a challenge for us, so I couldn’t be more pleased. I certainly hope this uptick in eating continues! And for that panic mode? I’m sure that’s not the last time I’ll hit the panic button with Solly. But for now, I can rest easier and try sleeping without always keeping one eye on the baby monitor.

 

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Our big kid, recently playing at the park.

Taking a Breather

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When Solly first began Physical and Occupational Therapy after he was released from the NICU, I was distraught if he missed an appointment. I mean, “end of the world, he was going to fall so far behind if we miss one appointment” distraught. I’d occasionally cancel an appointment if we were going to travel to visit family, but I did whatever I could to schedule a makeup appointment as if he needed to have a specified number of therapy appointments to go from atypical to typical.

Our very intuitive PT noticed my neuroticism and reminded me that Solly’s recovery isn’t a sprint, but it’s a marathon and therapy visits aren’t the only piece of the puzzle to help his brain recover and rewire. Exposure to different experiences and environments would be just as beneficial to his journey as therapy.

Keeping this in mind, we try to take a break away from therapy every few months for a vacation or staycation. Last month, we cancelled all therapy appointments, packed up the family of four and headed to the mountains for a 10 day vacation. We rented a home in Breckenridge, Colorado, and met some of our friends from Washington, DC, and New York City for some baby play time (both families each had a daughter) and some fun friend catch up time over hikes and dinners. I even got to connect in person with a fellow stroke survivor’s Mom who lives in Denver and who I’d only previously spoken to via text or Facebook.

It was a much needed break away from our daily life of appointments!