Posted on by loreleicharms

Updates!

Hello Everyone! Long time no see, as far as a traditional blog entry goes. Everything has been so strange and I have been mostly posting on our FaceBook page (Which please go “like,” if you have not already) . We had a small surgery this week, which we had been waiting on since before all of the COVID restrictions. Baby Corbin’s heels had tighened back up after his initial heel cord release back in September, so we had a follow up this past Tuesday, and was successful! We are hopeful this one will stick, and once we go in for our follow up we will get the little guys first set of AFOs!

We are so excited that we were approved via insurance and will be receiving the baby’s first mobility aid! These AFOS (which are braces that will help us with weight bearing) A lot of children with Spina Bifida require a little more help with ankle or calf support, and this bracing will be our first step to walking! We are unsure how much assistance Corbin will need in the future with his mobility but we are so excited to start this journey towards his independence. We have been seeing PT once a week, and once some more COVID measures are lifted we will be going twice a week! We have seen so much improvement in his strength and abilities since we began Physical Therapy, and are overjoyed with the care we have received so far.

At almost 11 months old, we now have four teeth, and say two words (None of which are Mama!) We say “baby” and “Dada” for now. Our sitting has improved drastically, but we are still working on crawling. We have tried a lot of new foods, but our favorite so far has been pizza crust of all things! Don’t you worry readers, Mommy feeds us lots of fruits and vegetables. We love swimming in the pool, and have become quite the water baby! We are all getting a little stir crazy in the house together, and cannot wait until we can branch out a little bit and perhaps do the socially distanced nature trails nearby.

Overall just wanted to give everyone an update! Our family is staying safe and health at home. We have some follow up imaging to do once we hit the 12 month mark, and clinic reopens. Baby is doing great, we just wish we could enjoy more of the summer outside of the house!

Stay Safe Everyone!

Love,

Laura

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Watching cartoons at the hospital. We were so brave!
Posted on by loreleicharms

One year removed

The best way to predict the future is to create it

Abraham Lincoln

One year ago Corbin and I had our open fetal surgery to repair the hole in his spine. One entire year ago we went through several hours of major surgery together, and around this time I was already out of the OR, and sleeping in a recovery room. Our amazing doctors communicated to my husband Jesse that the procedure went well, and there were no complications. Honestly I cannot believe our journey in Philadelphia was a year ago, to me it seems like we just got home last week. I have such vivid memories of my fears of surgery, our many OB appointments, ultrasounds, lots of tears, but also lots of hope.

In the Spina Bifida community, the anniversary of one’s fetal surgery date is known as a child’s “Butt-day,” the day their tiny spines and butts were exposed to the world and repaired by the surgeons. We also refer to it as Corbin’s, “Sneak peek,” and “Miracle,” day. Originally I was planning on a family bbq, and pool day with his grandparents, but of course due to COVID restrictions we are abiding by social distancing, so that had to change. So we made cupcakes, and Corbin got to try cake for the FIRST time, (It was a HIT!) we took some funny pictures after play and bath time, to show off our scar, and show how strong we are. Mommy, Daddy and baby have had lots of cuddle time, and sang silly songs. My husband is thoughtfully making me a special dinner tonight, because in his words “You went through something hard too, not just the baby,” and he is re creating my post surgery meal from 2019. (Ravioli, garlic bread, and lemon bars for anyone curious) We will spend the evening as a family, and reflecting on the last year.

I wish I could speak to past me, and tell her that everything would be okay, that it would be a long and difficult road, but that, the little baby in her tummy would defy all odds, and amazing his doctors and therapists every day. That he would be unconditionally loved by his family, adored by his parents and grandparents. That he would have a funny laugh, and a cute smile, and already an amazing sense of humor. I wish I could hold her hand when she cried and erase all the fears and doubts. There will be setbacks, and bad days, but that he is the most amazing odds defying warrior, and the best thing to ever happen to her family. He is perfect.

Thank you to everyone who takes the time to read this blog. Thank you to my incredible husband, who is the most amazing father to Corbin. Thank you to my family and friends who have supported all of us throughout the last year and a half of our journey. Thank you to everyone who cheers on Corbin from near and far, we love and appreciate you! Pics from our Butt/Sneak Peek day below!

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Posted on by loreleicharms · 1 Comment

Onward and upward

As of tomorrow my little baby Angel will be FIVE MONTHS OLD. I cannot believe it! If you had asked me even three months ago, still in NICU how I would be feeling at this moment, I would not even know what to say. It all felt so un-ending, and while I have anxiety over some upcoming neurosurgery appointments, overall I am going into the winter holiday season in a great mood. It is hard some days, to not dwell on how hard things were at the beginning, I almost feel like I am waiting for the other foot to drop. I think that is a voice that all special needs parents hear in the back of their head from time to time.

“Oh he is doing so great!” ……. For NOW

“He is making so much progress” …….Just you wait

I think I am so pleased with how great he has been doing, and how amazing his care has been, but am realistic enough to know that we will not be without struggle and complications. Do I delude myself into thinking everything is perfect, knowing that the rug will eventually come out from under me? Or do I be more realistic and attempt to not let that snowball into pessimism.

I think that I just need to take everything one day at a time. With each appointment, and physical therapy session, and bill, and phone call, I need to just take a deep breath and live in the moment. I need to enjoy my baby while he is a baby. I need to get those late night, and early morning cuddles, and play peek a boo.

Baby seems to recognize faces a lot better now. Which has been so nice, as I was worried about going back to work, and losing our connection. When his Daddy or I pick him up from the grandparents in the afternoon he greets us with smiles and squeals! He is getting along better with his puppy brothers, and the cat is starting to explore his room, and decide that they are at least neutral. He is such a happy and joyful little boy, and so full of life.

We are so lucky.

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Posted on by loreleicharms

Recovery

“Health is a state of body.

Wellness is a state of being.”

J. Stanford

Recovery from Fetal Surgery is no joke. For anyone reading this who has had, or is considering the procedure I just want to say that in the interest of transparency. I have had major surgeries before, including a kidney surgery when I was 18 that led to a cumulative 17 days in the hospital. My recovery from any of my previous surgeries was a cake walk compared to the week after my fetal surgery. I am sure a part of that is, I wasn’t ALSO pregnant during those hospital stays. I think with my medical history I assumed that I would bounce back super quickly, and given the nature of the incisions, and the medical needs after the fact, that just wasn’t the case. Getting this treatment was 100 percent the best choice for my baby, and my family, but after the fact I can see why they are somewhat picky about who is eligible, and I can also see why a mother would instead choose to do the lesion repair post-birth. This isn’t a cookie cutter condition as far as the babies go, and its not a cookie cutter decision for every family. Was it the best decision for my baby? Yes. Would I do it again? Absolutely. But it was challenging.

[ Also just a warning, today’s blog is a little yucky, and talks about bodily functions, if you are not willing to hear about my body in a really personal and medical way, maybe skip this one]

The day of the actual surgery I slept for the next ten hours. I would wake up periodically when the nurses would come in to take my vitals. We would chit chat, they would ask about my pain level. I still had my epidural in, and was on a pump of pain meds, so it was well taken care of. Nothing by mouth, but I was too sleepy to think about food or water, so I just napped off most of the first day.

2nd day I was able to take fluids and ice chips. Some broth by lunch time. I was still hooked up to all pain meds, but was more lucid, and able to talk and converse with my husband and the nursing staff. They told me I was doing really well. I was still taking lots of naps. Day three was the hard one. My epidural was taken out, and I was switched to oral pain medicine. We were trying to work on moving my legs and feet so we would move up to walking and showering. Everything hurt. I had heartburn, and cramping, and general soreness from laying in bed. I was hooked up to a belly band that measured if I was having any contractions. The machines were loud and beeping which I hadn’t noticed when I was on the stronger medicine. It was hard to sleep. My oxygen saturation monitor kept going off every two to three minutes.

Around late afternoon/early evening we tried to have me walk to the restroom and get used to movement again, I got into the bathroom and then promptly passed out. It was very dramatic and the entire nursing staff came in. I woke up. Very embarrassed and very discouraged. I vomited, and in general felt really disgusting. I was in a lot of pain, and I also hadn’t been able to pass urine since my foley catheter came out, and knew my time was running out before they cathed me again due to just.. physical NEED for me to urinate before it could cause some other complications. I sat on the toilet with the sink running for almost 40 minutes. NOTHING. Nothing happened.

My very sweet nurse kept coming in to check on me. I cried. She was sympathetic. We ended up having to cath me when I was awake. I cried the whole time. Not because it hurt (although lets be real, its not PLEASANT) but because I felt like I wasn’t doing a good job healing. Between passing out, and throwing up, and then Pee-gate 2019, I just felt like I was failing at recovery, and being really hard on myself. She reminded me that there weren’t many medical procedures that required both general anesthesia as well as an epidural, and what I had done was really hard. She reminded me to be kind to myself. I was beating myself up, and sure that entire care staff thought I was annoying and a huge baby. I was sure my husband thought I was nuts. It was a lot of self judgement, mixed with physical pain, mixed with mental exhaustion. She calmed me down, and I went to sleep, and she said we could try again in a few hours. I fell asleep crying softly while watching the hospital TV. Around the fifth episode in a row of House Hunters I got up. I warned my husband that I was going to talk and try to make it to the bathroom again. He made me call the nurse just in case, given the days excitement from before. AND THEN IT HAPPENED YA’LL.

I peed. I PEED. I know this sounds ridiculous out of context but I am telling you it was a HUGE deal. It had been DAYS. The secret? I’m not even kidding, but it was essential oils. I am dying laughing typing that. The nurses had put peppermint oil in the toilet, it helps things dilate it what I have been told. So that is the secret to post surgery help with passing urine, if you ever need to make that transition quick, HIGHLY recommend that trade secret. I showed the nurse that I had peed (McKenzie if you ever read this you are amazing) We both did a happy dance and freaked out. Its weird how excited everyone gets over that type of thing, but really it was very exciting, and meant that my time in the hospital was coming close to being over.

I continued to urinate on my own, was able to finally take a shower. The shower was REVOLUTIONARY. I had been dry shampooing and using baby wipes only for about a week, and it was SO nice to actually shower. I had to shower sitting down, but was able to wash my hair, and freshen up. I put on my own clothes, and was taking short walks around the room, only a few steps at a time. I was getting discharged soon, and we only had a vague plan where we were going. I had been too drugged up to really realize that in a few short hours we would be… out of there.

So we had applied for the Philadelphia Ronald McDonald House earlier that week. Unfortunately space there is limited, and we were on the waiting list. I had set up a condo rental for a few days for us, and when we were discharged we headed there in an Uber. Driving fresh off of surgery SUCKED. Every little bump in the road felt terrible, like my stomach was going to be ripped open. I was positive I was going to have contractions and have to go straight back to the hospital. We got to the condo, all the while figuring out how my new wheelchair worked, and how it didn’t always fit through tiny urban doors and hallways. Funny story I actually booked a different room initially and had to cancel with that building because I hadn’t checked first that they had an elevator, and I wasn’t allowed to walk or climb stairs. yet. This new place had an elevator, and was a small but cute and modern space. I was comfortable and we were happy that we were in a less clinical atmosphere, and able to sleep in the same bed! A small luxury that we hadn’t been able to do in over a week.

I made a pillow nest and took lots of naps, and lots of pain pills. My incision was healing well, but still quite sore, and very large. It has now healed a lot and shrank, and I think over time will just be a faint white line (Thanks Doc!) At the time however it was raw, and new, and really a hit to my already dwindling body image. Its hard to not be able to do anything for yourself. I could only walk from my bed to the ladies room. I would even tell Jesse every time I was going in there so that he could listen and make sure I didn’t pass out. I showered sitting down, and with the same warning to him to listen for any signs of distress. As a very independent person I was frustrated, and stir crazy. I had to wear compression socks during daylight hours, which made me feel 90 years old.

I was to be on strict bed rest for around three weeks. So I was in for a few …. booorrrriiinnnggg weeks. I just tried to focus on the positives… I was out of the hospital. My pain was managed. I was with my husband. I had a clean place to stay that was close to the hospital pending any emergencies.

Its the little things.

Posted on by loreleicharms

D-Day

“She was never quite ready. But she was brave, and the universe listens to brave.”

Rebecca Ray

April 25th I went into the hospital bright and early for Pre-op. They did a blood panel, an ultrasound, and a vaginal ultrasound to check on my cervix, a quick check in with the team and my vitals and then I was cleared to go home. They gave me an anti bacterial wash to use at some point before the next morning, and gave me instructions to drink “an unreasonable amount of water.” I was allowed food until midnight and clear fluids up until 5am, we were due back at CHOP around 6am the following day.

Our previous night had been spent in a condo rental in the neighborhood of Rittenhouse Square. It was comfortable, and right near a book store, which to me was the best part. We would stay here until after I was admitted, and then of course Jesse and I would be staying in the hospital until I was discharged. We spent our last night perusing the Barnes and Nobles at the end of the street, I bought some activity books to fill up my time on bed rest, and looked at comic books and novels with my husband. Since it was my last chance for solid food for the foreseeable future I was allowed to pick dinner. We got Italian, and I ate WAY too much. I stuffed my face with ravioli, and garlic bread, and a lemon bar, and I didn’t regret it at all. After stuffing my face with carbs, and drinking what I hope could be considered the correct amount of water, I took a shower, neurotically used the pre-surgical wash they gave me about four times, and tried to sleep.

Spoiler alert. I did not sleep. I was much too nervous and anxious to sleep, and spent most of the evening, and into the early morning staring at the ceiling listening to everyone else’s snoring and the sounds of the city below our window. I think overall all night I probably cumulatively slept around an hour and a half, and woke up around 4:00 am, as we had a scheduled Uber rider coming to get us and take us to the hospital. I packed a small bag with some pajamas, and toiletries, my phone charger, and a few other little things. I knew I wasn’t going to be super active during the hospital stay, so kept it light. With everyone awake, but sleep deprived, we hopped into the Uber around 4:45 am and headed to CHOP. Kim grabbed a coffee, and we went headed into the Special Delivery Unit to check in to my room.

My room was big and airy, there was more than enough room for visitors, and a pull out bed/sofa for Jesse so that he could stay with me. My nurses came in and introduced themselves to me, we put in my IV, and switched me over from my street clothes into a hospital gown. We all tried to keep the mood light, as I’m sure people could sense my anxiety. I had spent pockets of the night before crying, both out of relief and fear. I had gone through two surgeries before as a teen and in my early twenties, I knew and was confident that I was healthy enough for the procedure, and that I had no adverse reactions to medication or anesthesia. I was worried about my baby. All medical procedures have risks, and while this team was the best around, and their record was amazing I was still nervous. The baby would be effected by my anesthesia and would be given pain medication, he was going to be operated on and he wasn’t even born yet. Its a lot for a mom to take in. I feel like Jesse was even more afraid than I was. I was in mom mode, I wasn’t worried about myself at all, but he was worrying about both his son, and his wife concurrently. I just feigned over the top positivity, (Fake it until you make it, right?) I made jokes with the nurses and the surgical team. They eventually came in and gave me my epidural, which was way less terrifying than movies and TV would lead you to believe. To be fair I told them to make sure to place the epidural when Jesse was out of the room, and also not to show me the needle beforehand so I couldn’t picture it. But after numbing the area it just felt like pressure, and then nothing at all. They were just about to whisk me back to the Operating Room when my parents rushed in. They had been stuck in traffic, and I wasn’t expecting to see them until after I returned. We all had last minute hugs and kisses. My mom cried a little bit saying bye to me, and reminded me that as much as I was worried about and loved my baby, she felt the same way about me. I was HER baby, even at almost 30 years of age.

I was whisked down the hallway. I normally don’t remember being IN the actual OR, or at least I didn’t in past surgical situations, but I was very much awake at this time. I transferred myself from the hospital bed to the operating table. I wasn’t crying, I wasn’t hysterical, I was calm, made conversation with who was in the room, and mostly just wanted to be asleep. Besides not getting any sleep the past few days I knew the faster I fell asleep the more quickly it would be over and I could feel relieved and focus on recovery. They must have sneakily given me a sedative because I started feeling super calm, and then eventually they placed the mask on my face and told me to take deep breaths and count. I didn’t even make it to 99.

While I was sleeping, I was given a breathing tube, an arterial line in my wrist, (Those are kind of like, super IV’s used for blood pressure monitoring and strong meds) My epidural was turned all the way up, and was under the effect of the general anesthesia. My vitals as well as the babies were constantly being monitored. They opened me up in an incision slightly higher than you’d see for a traditional C-section, they opened up my uterus, exposed the baby’s back and did the repair on his spinal lesion. They then replaced some of my amniotic fluid and worked on sewing me back up, all the while making sure both me and the little man were doing okay. I of course don’t remember any of this happening, I just was very aware of the steps of the surgery.

I awoke in my hospital room. Very tired and very loopy, but not in any pain. I could not feel anything below my belly button, as my epidural was still in, and I wanted to sleep for a thousand years. The surgeons had periodically come in while I was still being operated on and updated my family about our progress, both myself and the baby did fantastic and we had no complications. They were very pleased with us both, and would check on me in the coming days. I was on IV drip only as far as sustenance went, which was unfortunate because my throat was very sore from the breathing tube, and I would have killed for a glass of water. My parents and Kim stayed for a few hours to make sure I was stable, I’m sure I slept through most of it, I hope I didn’t say anything super embarrassing, I had forbidden Jesse to record me in any way … just in case. Eventually they headed out back to the suburbs, and Jesse and I settled in to our temporary home. The nurses came in periodically to take my vitals and make sure I wasnt in any pain. And that… was that.

It was done.

It had happened.

Now what?

Posted on by loreleicharms · 1 Comment

Back in the city// Museum of Art

“Art is the highest form of hope”

Anonymous

Our last day in Philly pre fetal surgery we decided to head to the Museum of Art. This is bar none my favorite place in town. I’ve probably been at least three times and continue to always prioritize it on my list of things to do when I am in the area. The museum has varied time periods ranging from medieval and renaissance art, all the way through impressionism and more modern artists of North America. They have a huge eastern art exhibit where they have re-created entire rooms of Asian temples, and a very impressive arms exhibit if you are a nerd like me and love looking at swords and armor. I would have spent the entire afternoon looking at jousting armor but eventually they dragged me out.

We spent a lovely day looking around, enjoying and reading about beautiful things. I think this was just the medicine I needed before getting my procedure done. I needed to look at beautiful and historic things. It was a way for me to travel from the place I was, even just for a few minutes, and distract myself. I am a very artistic person. I spend a lot of my time expressing myself through my voice and theater hobbies, I assistant direct a stage show every summer for a local convention, (Shameless plug go and check out Metroconventions.com) and help edit and make creative choices for the same. When I’m not doing any of those things I perform with a local radio play company founded by my husband, called the Tales of Mild Interest Radio Theater. (Another shameless plug you can find us on FB @ Tales of Mild Interest OR on Instagram at TMIRadioPlays, we also can be found on Spotify as we were recently featured on there as part of the Atlanta Audio Fringe Festival) Art is what keeps me sane, its what keeps me moving and functional from day to day as it gives me an outlet for my feelings. Being without it for so long has been really difficult as there are many moments that I feel not only disconnected from those forms of expression, but also the many friends and huge support systems I have cultivated through said hobbies. It was so hard for me to have to talk to my various performance groups and let them know I was taking the summer off, that I would be very far away and out of touch, and unable to perform and also unable to just…. be WITH them for a very long time. As much as I knew and still believe that I was doing the right thing for my family and my baby, its hard to just pack up and leave your many friends, and especially for my convention schedule, it would mark the first time in 13 years that I wouldn’t be spending my summer with that group of people to create something amazing. That was tough to swallow. But I know they will welcome me back with open arms when I am able to return.

Luckily I can say that this outing was a good day. I hadn’t had many of those since…well since exactly March 27th during my anatomy scan in Tampa. Truly good days had been hard to come by, and I was grateful for this one. We looked all around the HUGE museum, my husband visited the statue of Rocky they have outside (yes just like in the movie, you can visit him on the front steps) We had a nice meal, and the weather was gorgeous, and I was surrounded by people who loved me, loved my baby, and wished us nothing but hope and good fortune.

Some pics and relevant links below. 🙂

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Stock photo of Front of Museum (mine came out blurry)

If you feel like supporting/following any of the Art that is close to MY heart. Please see below. Thank you!

METROCON- Florida’s Best Anime and Video Games Convention– Check out our entertainment under the EVENTS tab- https://metroconventions.com/

or the METROCON Facebook Group- https://www.facebook.com/groups/30239647731/

Tales of Mild Interest- Radio Theater

Facebook- https://www.facebook.com/TMIRadioPlays/

Instagram- TMIRadioPlays

Youtube- https://www.youtube.com/channel/UC6S30oZxJo7pQ0P41HzERKQ