Posted on by loreleicharms · 2 Comments

Temporary Living

Temporary setbacks are overpowered by persistence

Quentin L. Cook

After condo hopping for a little over a week we were able to move into our new “home,” at the Ronald McDonald House of Philadelphia. I was thrilled. Not only was the constant moving really hard on me physically, but I was ready to just feel secure and know that we had a long term place to stay that was close to the hospital. I had all of those worst case scenario situations about early labor running through my mind and my anxiety was through the roof constantly. We arrived and I instantly felt better.

For anyone who isn’t familiar with this charity let me share a little background. The string of Ronald Mcdonald House charities act as homes away from home, for families dealing with pediatric illnesses and treatments at hospitals in the host city. It is a place for the parents and siblings of sick children, and or the children receiving treatment to stay at little to know cost to themselves. You get a room for your family, a ton of therapy and group resources, access to social workers, as well as free meals while you stay there. They have big play areas for the kids, and constantly try and keep it positive for the children, which I think is amazing. They have enough to deal with. It is a truly incredible charity, and once we are back in the black financially I plan on donating to them yearly, as they have done SO much for my family. The PRMH was the first of its kind in the entire country, and was founded in 1974. At that time they could support 7 families at a time, and now with various moves and expansions that number has increased to over 100. They just expanded and built a brand new building, which is where we are currently staying. We are the first people to ever stay in our room, and I am completely comfortable and taken care of. Every week on the day of my appointment there is a shuttle service to take us to and from the hospital, so we dont have to worry about driving. Its not home but like.. truly is amazing, and I am completely grateful we get to stay here.

We have been at PRMH over a month now, and its been ten weeks since I have seen my home. Its difficult. Some days are really hard. I am about five weeks from my scheduled C section, and am holding out that he makes it to 37 weeks, which would be the absolutely best case scenario for his development. My goal over the past month or so has just been…. STAY PREGNANT. Take your meds, keep calm, rest, dont over exert yourself. Stay pregnant. Strict bedrest was really rough because its hard to convince yourself to take care of yourself when you arent going anywhere. Luckily that only lasted three weeks, but I had to bargain with myself and convince myself to do basic things like brush my teeth, and shower, change shirts etc. There didnt seem to be a point if I wasnt allowed out of my bedroom anyway, plus for the first week or so I was still dealing with a fair amount of pain. I dipped into a little bit of a depression but luckily once I was cleared to modified bed rest and was at least able to take walks and have short excursions in the real world, it has made a HUGE difference. Now we can at least go to the store, or the movies, lunch etc, my husband and I can have SHORT dates together, although inevitably I come back to the room and fall asleep. The tiniest things make me exhausted and I am … really hoping my normal energy level returns after the baby is here… because its non existent currently. All my nurses have assured me it will! Fingers crossed! I feel like a bit of a hot mess, although every week its a little easier to walk, bend, and do basic tasks. So far I have not had any contractions, bleeding or signs of early labor but I am still being very cautious. Probably a little over cautious but, better safe than sorry.

Thursdays are my favorite days of the week because its appointment day. That may seem strange that my favorite day of the week is going to the hospital, but it is! It means I get to see my baby! Every week we have a short ultrasound to check his progress, and its nice to see his tiny face, and hands, and know that he is doing well. I like the reassurance of seeing him, and getting to see my reason for going through all of this really hard stuff. My baby <3. The love of my life. So while the rest of the weeks may be really hard and repetitive, Thursdays are ALWAYS a good day ❤ So far the little guy is doing well. His brain and heart are looking great. His Chiari II brain malformation has virtually reversed and his ventricles in his brain are currently well within the normal range. He does not currently suffer from Hydrocephalus, this may change but I am holding out hope. This was my main goal for getting this treatment done. Any mobility/orthopedic/other issues we must face moving forward, at least I was able to do what I could to make sure that some of his neurological issues and surgeries could be avoided. if I could improve ONE thing it would be worth it, and mean less invasive intervention later in his life. I am so pleased with his progress and healing so far, and he is already stronger than almost anyone I know. Mommy’s little warrior for sure.

Thursdays also mean prenatal class aka “Mama Care,” at CHOP. I … LOVE Mama Care. Its a voluntary group weekly meeting with a small group of parents also getting treatment from the Special Delivery Unit. Varying diagnoses, varying backgrounds etc. I had felt so alone until our first group meeting. Its definitely a form of therapy for me, to hear that I am not alone. There are other families, and other mothers who have the exact same fears as me. Fears about this really scary and hard situation, fears for their beautiful and innocent children, and the future. These women are so beautiful and strong, and I am so grateful that I get to see them once a week. This coming week is the last one for the session and I am somewhat devastated its ending. Some of the women in our class have already given birth or are set to in the next few weeks, so the sessions have been getting smaller, but I really have gotten SO much out of it. Several of the mothers and support family members are also staying at PRMH and its nice to see familiar faces in the hallways and the cafeteria.

We will be here until delivery at the end of July. Send good vibes that the little man behaves that long! I need to have this bun in the oven for as long as possible!


Ciao for now.

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 · 2 Comments

A Wrinkle in Time

” “She believed that the Buddhists were right- that if you want, you will suffer; If you love, you will grieve.”

Anne Lamott

Today I fully intended to write about my first few days of recovery and continue this blog in a linear fashion, but I am not having the best day and so instead I think this will be a little bit more abstract. Today marks a little over eight weeks since I have been home. I have not seen my pets, my house, or the majority of my friends in a very long time.

I do not regret making this decision. I one hundred percent think that this was the best medical decision for my son, I feel incredibly lucky that we were both candidates for this treatment, as its harder to get than one would think. I am grateful to be in a safe place to stay, and I am grateful that my husband gets to be here with me, and continue to work so that we aren’t going into complete financial ruin. But the mental and physical toll of not only recovery, but being away from anything and everything familiar is hard. Its really hard. I miss walking my dogs, I miss seeing my mom. I spent several hours two days ago just crying.

Crying because I feel displaced.

Just a short vent. Some days are easier than others

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. 🙂

Image result for Philly Museum of Art
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

Posted on by loreleicharms

The Keystone State

“If I have a monument in this world it is my son.”

Maya Angelou

We last left off with my approval of the fetal surgery and a date set. So that was both awesome but scary. We had checked out of our hotel already, and weren’t really sure what the next week and a half would entail. My parents had been staying with a long time family friend Jim, and his wife Chris, in a suburban area called Royersford. They had offered us a place to stay, but I couldn’t help but feel that we would be a huge imposition, and I didn’t want to burden other people. I already felt like I was taking up so much of other people’s space and energy, but at the same time, could not afford to pay hotel costs for the next ten days, if I wanted to keep my house and pay my mortgage.

So we agreed, very graciously, and were on our way to the suburbs. Jim and Chris (last names excluded for privacy) are amazing people. They are funny, well educated and kind people who have been like family to my parents over the past several decades. There is no way for me to thank them properly after letting us stay in their home for the week and a half we were there. They have a lovely house, which had enough bed space for both myself, Jesse, and all three parents. My mom and dad had been staying in their proper guest room, and even insisted that they let me stay in there, and switch to an air mattress, as everyone wanted to make sure I was as comfortable as possible. This only made me feel slightly guilty as I was feeling bigger and bigger by the day.

Now for a little bit of background, my parents (and the majority of my family) are actually from Philadelphia. So it was kind of kismet that the doctors and facilities we needed for the baby ended up being a stone’s throw from their childhood homes. Most of my aunts, uncles and cousins love Philly, and are huge fans of the local sports teams. My Parents? Not so much. My mom lovingly refers to Philly as a shithole, and was less than thrilled to be coming to Pennsylvania for an extended period of time. She hates the grey and yucky quality of a lot of the neighborhoods, the weather in general, and the Schuylkill expressway makes her hair turn grey from stress. My dad’s driving had reverted to terribly aggressive Yankee habits, and it was driving her nuts.

I didn’t mind the city. I had visited several times before to visit family, and had done most of the touristy attractions over the years, such as Liberty Square, the historic district etc. I was used to urban spaces as Jesse and I had lived in Chicago for several years. There are some amazing museums and libraries all over the place, and some very good theater if you are interested in the same.

We spent the next week and a half exploring various parts of Pennsylvania, and for the most part pending some of my emotional breakdowns, had a really nice time. One of our first field trips was to a Wegmans. Wegmans is basically the… Disney World of grocery stores. I know locals will read this and laugh, but I am telling you that down south we don’t have ANYTHING that compares. Its a magical fairy world and my husband would have spent days in there if we hadn’t dragged him out. It was nice to be in a more homey environment, and have some wide open spaces to explore.

There were a lot of cool “specific to Pennsylvania adventures” we had in the coming days ahead. We visited the Amish Farmers market, which was one of my favorite days. I say Amish, but in reality it was a mix of Amish, Mennonite, and general Pennsylvania Dutch baked goods, groceries, meat, dairy etc. They even had a huge greenhouse with beautiful seasonal flowers. We all bought various goodies, and had some of the best desserts and baked goods I have ever had. Me being the token pregnant lady really enjoyed the donuts. We explored some of the local smaller towns, including making a stop in Skippack, which was where my parents lived as newlyweds. We drove by their first house, and my dad’s old medical practice that he opened fresh off his residency, as well as the local places they used to visit when in their 20’s. It was really cute, and I think it helped my mom realize the parts of Pennsylvania that she had forgotten she actually loved. My mom used to work for the Department of Agriculture, so she would habitually geek out over the various farms we would pass, as well as the animals, and tell us stories about her time working for the government and visiting the different rural regions of PA. It was like looking into a scrapbook in real time. I think as children we all assume our parents didn’t have full fledged lives before we were born, so it was nice to see this early chapter of their marriage and experience those memories secondhand.

One day, my mother, Kim and myself made the trip out to Valley Forge. For those of you who, like myself had no idea what that is, Valley Forge is the site of a winter encampment used by the American army during the Revolutionary War. You can tour the camp, and see the shelters and dorms used by the soldiers during the war, and the entire surrounding area is a historical park. There are picnic areas, monuments, bike trails, and overall its just a beautiful place to visit. You could spend multiple days there and still not see everything, we just did a short day trip. I WILL say that the cell phone tour is terrible, and not worth it, either just grab the map and make your way around on your own, or wait until the actual guided tour groups. I have included some pictures below.

Its been interesting to spend so much time in a place that is so different from ours geographically and as far as horticulture. I have loved the beautiful hills, and different colored trees (Why cant I have purple trees in FL? its not fair!) And a plus side to being in a place that doesn’t constantly have 90 percent humidity, my hair is looking AMAZING. Minus hospital days I have not had a single bad hair day since we have been here. I feel like a Pantene commercial. 🙂

We went to mass on Easter Sunday with my mother in law Kim, had a nice family dinner with the entire household. I got to wear the one nice outfit I had brought with me, and felt pretty and feminine for the first time in weeks. It was a nice change of pace.

The next few days were spent running errands and just reveling in domestic normalcy. We bought myself and the baby some new clothes at the King of Prussia Mall, did a few Target trips. I enjoyed just being in a suburban environment, where I could close my eyes and pretend I was home. I ended up chopping about six inches of my hair off, since I wasn’t sure at that point how long Id be bed ridden, and didn’t want to have to deal with it for a while. Unfortunately, when you’re constantly taking prenatal vitamins, your hair grows insanely fast, and mine is already back to the length it was and looking scragglier by the day. Oh! And for those following along at home, Jesse and I tracked down a piercer who was able to safely and quickly take out my nose ring. She was very sweet and confirmed that the style I was wearing was difficult to get out. It took her two seconds, and when I related to her that I had to take it out for a surgery she didn’t even charge us. Sadly my nose has since closed up, and Ill need to get it re done after the baby is here, so it was a long side quest that didn’t really result in anything, and was disappointing. I had looked.. SO CUTE. What a bummer.

It was nice to have a relatively low key and normal week. I had no idea what the recovery or procedure was going to feel like physically or emotionally, so this little reset was… very welcome ❤

Posted on by loreleicharms · 4 Comments

Day 2

“Anxiety is nothing but re-experiencing failure in advance. What a waste.”

Seth Godin

Day two of diagnostics began bright and early, but was scheduled to be much shorter. One on hand a lot of the logistical anxiety was over for me. I knew where to go, I knew where the elevators were, the different offices, even the cafeteria (My mom says the mushroom brie soup at CHOP tastes like someone’s grandmother made it. She was very impressed) Most of this day would just be hoping that we had jumped through all the hoops correctly, and that I was deemed healthy enough to have the procedure. I had gone over all the factors that would have denied me in my head all morning, my BMI was normal, I don’t have a history of heart problems, I am in the appropriate age range, I have a support system, I have never had a previous C section, and so on and so forth. I went through the list in my head a dozen times, but it just kept buzzing.

We met with the Neo-Natologist, who was completely hysterical, and went over what we could expect from the baby’s NICU stay, and the best and worst case scenarios for preemies, as SB babies pretty much never gestate past 37 weeks, and with the surgery there are risks they can be born much earlier. Luckily I myself was a multiple, and was born at 32.5 weeks, so my parents and family in general was very familiar with NICU benchmarks and protocol. The doctor was hilarious and really cut the tension of an otherwise really stressful day, we bonded over our love of Disney and he asked me if he could come to my delivery. I told him that everyone else was going to be there, so the more the merrier.

Eventually we did our various meetings for the day, and met with the entire surgical team. We were in a small conference room, and there must have been at least ten people there. We met with the legend himself Dr. Scott Adzick. Dr Adzick INVENTED the surgery we were trying to have on the baby. You can see him all over the CHOP website, and in all of their promotional surgical videos about the procedure, as well as featured in their Documentary related to the same entitled Twice Born. I will include some links on the same below for those who are interested. The man has a quiet calm aura, and you can tell within moments of meeting him he is the most intelligent person in the room. (Which is really saying something, as the entire team are rock stars) He also looks a lot like Dick Van Dyke, and has amazing blue eyes. I told him he was the Brad Pitt of the hospital which he found amusing and commented to me that he was going to tell his wife that when he returned home. Dr Adzick went over the entire history of the procedure, starting from their trials decades ago in sheep, to monkeys, to an experimental human trial, all the way to today. His team has done the most fetal SB repairs in the entire world, and he trains the other doctors in North America and Europe who now perform the procedure at other hospitals. He is truly an amazing person. The type of person who accomplished all this, is head of fetal surgery, and also got an MBA from Carnegie Mellon in his spare time.

We also had the pleasure of meeting Dr. Greg Heuer. Dr. Heuer, also brilliant and empathetic and FUNNY. He really knew how to lighten the mood and has a real passion for what he does. Between the two of them I think they are some of the best doctors in the entire world, and I mean that in the most unbiased way I can express. He went on to tell us about his passion for these kids, and how completely amazing and inspiring they all are. He went on to tell us that once he performs surgery he considers them “his kids,” but he will allow us to foster parent the baby moving forward. Speaking to him gave me a huge sense of relief and a huge dash of hope that our son would be happy and healthy. In his words “These are normal and happy kids, they just may have some different ways to get around and function day to day” And you know what? He is right. And that is okay. Speaking with him was one of the highlights of my day, if not my entire journey here in Philly.

Also in the room, was our amazing coordinator Stephanie, who was such a comforting and strong presence for me. The Anesthesiologist, whose name I cannot remember due to the flood of people I met, but who was a very pretty brunette, I have never seen such a beautiful medical professional in my entire life, and she was a complete rock star. Smart as a whip, and performed the perfect epidural on me later that week. I cannot thank you enough wherever you are. As well as one of the OB’s, and various other team members. Now you’d think with this many people coordinated to be in one place at one time that would mean we got approved …. right? But nobody had said the words to me “You have been approved for treatment” to me and therefore I was still kind of feeling like we were in limbo. I guess everyone in the room assumed we knew that we had been picked as candidates, and we were over tired and oblivious, which in hindsight is very amusing, because at the end of everyone’s speeches they were asking us if we thought we would go through with the procedure or if we had decided against it. Luckily since we had over a month of discussion and writing out a pro and con list already, Jesse and I were on the same page already, and knew that we would want to move forward.

We told the team we were wanting to move forward. We had been told through the process that most likely if approved we would be scheduled for early the following week, so I was ready to rock and roll. After weeks and weeks of waiting I was ready for them to help my baby and begin healing. The team shook my hand and said that we would schedule the procedure “in a few weeks,” and my stomach… dropped.

I began to cry. Not huge choking dramatic sobs. No the kind of crying when the person goes pale, and just a few pathetic tears escape and trickle down your cheeks. The kind of crying when you are just so exhausted and emotionally spent that you cant sob, but the fluid keeps coming out of your eyes. Dr. Adzick immediately looked very uncomfortable and asked me if I was okay. I tried to explain to him in the most coherent way I could, that we had traveled a very long way, and that due to me finding out earlier than normal about the baby’s condition I had been living with this cloud over my head for weeks, and was under the impression that we would just be waiting over the weekend into the earlier part of the following week. I was so embarrassed that I had broken down in front of this brilliant doctor, who most likely now thought I was a lunatic. What I didn’t say to him was that I had been hotel hopping, and was far from home, and in addition to worrying about my baby was throwing money into a pit in order to stay close to the hospital and feed us, all the while paying all of our bills back home, mortgage and car payments etc. I also hadn’t yet gotten my medical leave paperwork approved by my place of work so that was also up in the air, and my anxiety brain was convincing me that I was going to lose my job, lose my medical insurance, and yanno. the sky would also fall leading to an apocalypse of some sort.

He immediately looked over at our coordinator Stephanie and asked her to remain behind after the meeting. I was not sure if this was a good or bad sign. In reality what I THINK happened, is that I assume another patient was approved who was farther along than I. You see, while the procedure used to be performed at an earlier gestation, it was found out that if you wait slightly longer before going under, that the chances of complications went down. I was only around 21 weeks at this meeting. The fetal repair cannot be performed past 25 weeks 6 days gestation. This is all conjecture, but I theorize that a woman who was farther along than I had a more time sensitive situation. whereas I had a few weeks of wiggle room. Of course I would want said mom to get the care she needed, but I didn’t realize all of this until later that evening when I could ruminate on the day as a whole. The following morning I got a call from the office that they were willing to see me the following Thursday for pre-op, and procedure for Friday the 26th of April 2019. They advised me that normally they only do two fetal surgeries a week, as the team is very hard to coordinate, but were making an exception and performing one on a Friday. I’m not sure if perhaps the Easter holiday had put them a little behind, or if they all felt the need to convince the team to make it work after my complete melt down. But never the less we had a CONCRETE date.

It was happening.

The baby was getting help. We were approved!

But.. now what? What do we do in Pennsylvania for the next nine days?

Relevant Links:

Twice Born Info: https://www.pbs.org/show/twice-born/ (This doc is available on amazon stream, DVD etc. Worth the watch but highlights can be found on here and youtube)

Fetal Surgery Info:

Posted on by loreleicharms

In Transit

“Spina Bifida will be part of their life, but it won’t be the most interesting thing about them”

Colleen Payne

April 14th we boarded a flight from Tampa to Philadelphia. My husband and I were accompanied by my parents, the incomparable Nancy and Dominic, as well as my lovely Mother-in-law Kim. We were a travelling party of 5 and a half. The parents had decided to drive, and so they arrived in the Pennsylvania area about half a day before Jesse and I arrived. We touched down in Philly, and made our way to a Sheraton nearby the hospital. I was already exhausted, and knew I had a really long few days of medical testing ahead of me.

All I wanted was a bed, a good cry, and a stiff drink. But only one of those was possible, as of course I had been abstaining from alcohol, and also Kim was staying in our room, and I did not want to subject her to my weeping. She was already stressed out to the max worrying about HER son, and we had that in common. My parent’s were staying with family friends in a suburb about 40 minutes from the city and so I would not see them until the following day. We checked into the hotel and noticed a cute dim sum place next door adjacent to the lobby. I drowned my sorrows in some bao buns and scallion pancakes, and then settled in for the night to try and sleep

The keyword there is TRY.

For some reason the hotel’s fire and emergency system was on the fritz. Twice during the night the loud siren/intercom began to go off and urge us to head to the stairwells and evacuate. Other guests had informed us this had also happened the previous day multiple times, and was a false alarm. Luckily within five minutes the front desk had come over the same intercom and urged everyone to return to their rooms. It was a long night.

The following morning we checked in at the hospital, and I stepped into the Center for Fetal Diagnosis and Treatment for the first time. I was met with many emotions. Relief that we were there, and being proactive about the baby’s health, fear that we wouldn’t qualify, general anxiety over the testing we had to do. I put on a brave face, checked in with the office staff, and our party of 5 and a half family members waited in the lobby area.

Eventually they brought us in to an ultrasound room, and began what ended up being a 4 hour ultrasound. They needed to take very specialized pictures of the baby from many different angles and he was just NOT cooperating. They measured every inch of his tiny body, which meant jabbing several different sizes of wands into my pelvis for 4 hours. It hurt. a lot. I had to ask them to stop and let me pee at least five times, as the constant pressure on my bladder was overwhelming. We changed positions, on my back, on my left side, on my right side etc. I did my best to suck it up and not complain, knowing that this was probably the easiest part of my day.

Below is a picture of our baby at around 12 weeks, so a little bit of a throwback. You can see here that his legs are crossed. In hindsight I think that is when I first started to get a gut feeling that there may be something the matter with his development. In all ultrasounds up to this point he had his tiny legs crossed at the ankles and we didn’t see independent leg movement in both legs. This was the case at my initial OB visit, and even at the independent gender reveal center we went to at 15 weeks, his legs were crossed in a way the tech couldn’t see his genitals. We thought we were going to have to re-schedule the session, until I sneezed and his legs moved, they were able to snap the pic and then promptly he went back to the same position. I tried to just convince myself that he liked that position, but my gut feeling ended up panning out. During this CHOP ultrasound they looked at everything, and we heard a lot of good things about his heartbeat and fluid levels, his weight was good etc. They eventually after a lot of work got some proof of movement and flexion in his left leg, which was awesome news. The right leg appeared to have some weakness in the knee and ankle area, but his hip movement was good. They advised that we may not know the extent of the damage until he was born and they could do some more testing. He showed signs of a Chiari II malformation, which is very common in SB babies and occurs when the spine pulls down on the cerebellum. So we now had some specific information on his development, at least for now. Some answers related to his renal function and exact mobility needs we will have to wait until delivery. But for people like me? Knowledge is power.

Image may contain: ultrasound

Our day continued with lots of emotional meetings with social workers, a genetic counselor, and a research team. The social worker was lovely, we discussed our support systems, and family dynamics, I’m sure they wanted to figure out if we had the means to re-locate should we be approved for the procedure, and whether or not we would have the emotional support we needed for this big event and transition. The genetic counselor and I went over our amniocentesis results, and both Jesse and I’s family medical history. What was interesting was that his chromosomal reports came back completely normal, no abnormalities at all. Which just gave me a flash back to my discussion with the OB about not having any risk factors/family history related to this medical condition. I told the genetic counselor as much, and she repeated what our Florida doctor had said. The repetition was comforting.

The day ended with a scan of the baby’s heart (Which was perfect btw, A plus little guy) and then I was to get an MRI. I have an issue with enclosed spaces, and had already had a very emotional day, so to say I was anxious was an understatement. Jesse and I walked to Radiology, and they put me in a really cool hospital gown, and told me to take off any jewelry I had on. This.. SHOULD have been simple. I took off my wedding band and engagement ring and stuck them in my husbands pocket. Took out the small earrings I had on, and then…. we hit a snag. In late October pre-pregnancy I had gotten my nose pierced. I loved it, it was super flattering and I got compliments on it all the time. The issue was…. it was my first and only facial piercing and for the LIFE of me, I had NO idea how to take it out. I twisted, I torqued, I knew the brand and googled the easiest way to take it off, and was met with dozens of google reviews saying I had apparently picked a style that was notoriously difficult to get out alone. I had my husband stick his man fingers in my nose trying to help me, nothing worked. Eventually the tech came in to see what had taken us so long, as im sure we had been gone for at least a half hour. She seemed irritated. I was embarrassed, and still sniffling told her what a spaz I was, and how I couldn’t remove it. Another tech came in, a middle aged woman who patted my hair and told me since they only had to look at my pelvis it would most likely not effect the machine and walked me down to the machine.

My anxiety had spiked at this point, and I felt like the machine would suffocate me. They put me in the machine initially and when my limbs began touching the edges of the tube I started panicking and asked them to please pull me out until I could calm down. The same woman (BLESS HER) pulled me out, and began to comfort me. She got me a pair of ear buds to wear, so I could zone out, they gave me a little oxygen to use while in “the tube” and a face mask to wear so I could pretend I was in bed napping, or… literally anywhere else. The combo worked, and I spent the next 60 or so minutes in the MRI machine. I was SO happy when it was over. I put back on my street clothes, returned to the waiting area where I met with my family who seemed really confused on why this had taken so long. Apparently that was the theme of the day.

So that … was Day 1.

All I can say is .. ooooof.

Posted on by loreleicharms

The In-between

“The Waiting is the hardest part.”

Tom Petty

Once my husband Jesse and I received the official diagnosis of the baby, we were put in contact with the coordination team at The Children’s Hospital of Philadelphia. (CHOP) We returned home from our appointment on March 27th, and I spent the next 20 hours or so sobbing off and on, and forcing myself to eat. Something I would probably not have bothered doing except I knew that my little guy needed the nutrients, and that was more important than me being sad.

I just had so many questions. “Why us?” “How did this happen?” “How does this make any sense?” I was wracked with guilt, thinking that my son’s condition was my fault. At our past appointment I had to answer a very detailed questionnaire and it just didn’t add up. This condition did not run in my family, I had excellent pre-natal care, I had been taking FDA approved vitamins for many months before we conceived, I had no history of drugs, I was under 35, my hyper logical brain could not make any sense of this diagnosis. A plus B could not equal C, and I couldn’t process what they had told me. Our doctor could sense my guilt when I sobbed out questions about how I could have done better, what I could have done differently to stop this from happening? He explained to me that… well? They didn’t know as much about Spina Bifida as one would assume. The most common thing that correlates to the condition is a lack of folic acid in the mother, but it is not a causation. Other common theories are, exposure to common viruses, over heating, environmental exposure to certain chemicals, the list goes on and on. There have not been enough studies to pin point what actually causes it. The ambiguity of this reality keeps me up at night. Its hard to live with a reality that I did nothing wrong, did all the things I was supposed to do, and am still dealing with the fallout. It seemed so unfair. It seemed so random. I don’t handle random very well. I am not an impulsive person. I very anally and meticulously plan when to relax. Some would call me… “high strung.”

The following day I took off work. Luckily due to being a pretty type A nerd, who doesn’t like to take off work. I had banked a lot of personal days and was able to spend the next few days at home with Jesse, kind of processing what was going on and figuring out what we were going to do. We got a call from the coordination team at CHOP. Deanna (last name withheld for privacy) was a true angel, and probably spoke to me for a minimum of 70 minutes, meticulously going through our baby’s diagnosis with me, all the best and worst case scenario symptoms he may encounter given the lesion he had. (All SB cases are different and depend on how high/low on the spine it occurs. So the severity can range quite a bit) She went through what my diagnostics would look like if we decided to go to Philly, and we worked out a timeline. We were set to go up and meet with the Fetal Diagnostic team on April 15th, 2019. This was not an oversight on anyone’s part, in reality I needed to be at a certain gestation before the diagnostics and the potential surgery could happen, and we found out about Baby H, about a week and a few days earlier than most families, so we would need to wait just a little bit longer.

This was both good and bad news. Good news because I was happy we would have the chance to go and meet with… arguably the most talented and advanced pediatric surgical team in North America, if not the entire world. Bad news because it meant over two more weeks of waiting. Waiting is something we had already gone through so much of. We waited two weeks to see the specialist. and now would wait two and a half more weeks to see if the team at CHOP would even be able to help our baby. All the while knowing that the tiny life inside me was also waiting, and potentially losing more and more function day by day. I would rub my tummy every morning and cry hoping that he was okay, knowing that potentially he was getting worse with every passing day. Each day meant more and more of his spine was exposed while we waited for answers.

After taking the latter half of a week off from work, I finally went back. It was nice to see my friends and co-workers, and the normalcy was comforting. I kept telling myself that things couldn’t be SO bad, if I was at work. If I was working how bad could it really be? So I did my normal hours, I talked to my bosses about what was going on, talked to HR, kept them in the loop about the possibility of me taking medical related leave etc. I took a lot of walks around the office nature walk, and took lots of pictures of baby ducks.

I talked to my therapist. We had been seeing each other via Skype for about six months and she has been (and continues to be) a complete god-send. It was nice to have a neutral party to cry to, as I felt that doing that constantly around the house at my husband was detrimental. She helped me through a lot of my misplaced guilt and anxiety. She helped me realize where that anxiety was really stemming from. Fear. I was scared. I was scared and sad that my angel baby would have a harder life than others, I was scared that somehow his hardships were my fault, I was scared that people would treat him differently and not see his potential, I was scared that the longer I had to wait for this treatment his health may suffer more, I was worried about all those things mom’s worry about, bullying/happiness/the future etc. The things that keep all mothers up at night, let alone moms of kids that have some special needs.

It’s hard to describe how you can love a person so much. A person that you haven’t even met yet. But I loved this little soul so much, and all I wanted was to make sure he was okay, and he would be loved and happy. I wanted him to grow and thrive and live a fulfilling and independent life.

So I continued to wait…. ❤

Posted on by loreleicharms · 1 Comment

Dear Baby,

” ‘Sometimes,’ said Pooh, ‘the smallest things take up the most room in your heart.’ “

A.A. Milne

The big featured photo on the initial WELCOME blog post is the earliest picture I have of my baby. My very loved and VERY wanted baby. One day he may read this, so I will try not to be TOO embarrassing.

In June 2018 I began taking pre-natal vitamins. I was trying to get as healthy as possible because Jesse and I had been seriously talking about actively trying for children, and I wanted to make sure everything would go according to plan. I was working out 4-5 days a week, had lost about two dress sizes and about 20 pounds, and was feeling the healthiest I had in quite some time. I had weaned off my anxiety medication, and was using a Cognitive Behavioral Therapy to help alleviate some symptoms of the same, as I had dealt with Generalized Anxiety Disorder since my teenage years. I was eating cleaner, taking lots of vitamins, and eventually went off my birth control pills.

We began actively trying for a baby around September of 2018, which meant I had been on my vitamin regimen for about 4 months. The first few months brought negative results, but we hadn’t been too strict as far as marking ovulation days until a little later in, so I wasn’t concerned. The first week of December 2018 I got a positive pregnancy test, it was not one of those big romantic reveals like you see on TV. I had a late period, and just had a feeling, but my first few over the counter tests had come back negative. On a whim I decided to shell out the extra $2.50 and bought one of the fancy digital tests to see if that could give me an earlier or different result.

It was positive. I ran into my master bedroom with my jeans at my ankles waving a pee stick at my husband while exclaiming ” I NEED you to look at this, I think I am hallucinating!”

Then because I am a generally neurotic person, I took a few more. I couldn’t believe it. We wanted this baby so much, and I just had to keep convincing myself that they were real and really happening. I found out a little earlier than most people would, so I had to wait about three more weeks before I was far enough along that an OB would see me to do the initial scans and confirmation appointment. I took a test a week after that just to keep convincing myself it was happening. The first week of January I was able to go to my first OB appointment, my mother, younger sister, and husband all accompanied me

They did our initial sonogram, he was the size of a grain of rice, the ultrasound tech confirmed the pregnancy was real, and we all cried. My sister Katie affectionately called him “Rice Baby.” Rice Baby was the first grandchild on BOTH sides of our family, and the first baby to be born in our friend circle in quite some time. Everyone was thrilled! Other early nicknames included “McNugget” and “Earth Pig” which was an allusion to the Chinese new year. We were so happy, I spent most of the day crying, and looking at baby clothes on the internet. We knew we needed to wait to tell employers and the general public until closer to the end of my first tri-mester until we were out of the danger zone of miscarriages.

After that everything seemed normal for the most part, we discussed names and nursery ideas. my February appointment seemed very good, my blood work had seemed fine, strong heartbeat, I had even lost a little weight towards the beginning due to the morning sickness, but they did not scold me, and I was feeling overall pretty healthy. At 15 weeks we had been too impatient to wait and we went to an independent ultrasound company for a gender reveal appointment, we found out he was a boy. The first week of March I went in for my typical appointment, and they did some blood work, and an early Gestational Diabetes test. I was 16 weeks or so along. I was worried about the GD test, because I had struggled with my weight for a lot of my life, and while I was currently in a good place I was wracked with paranoia. I left to go home that day with my biggest fear being I would get a call the following monday that I had failed my glucose test.

On Monday I did get a call. I sighed when I saw the caller ID. I rolled my eyes and knew it was bad news, because if the results had been negative they would not have bothered to call. Moreso it was odd because the actual doctor was calling me and not the nurse or the front desk. I braced myself.

The doctor kindly informed me that, my blood panel had come back strange, and they wanted to refer me to get a high level ultrasound at a High Risk OB in Temple Terrace. She explained that the blood test was a screening and not a diagnostic, but my levels had indicated a chance for Neural Tube Defects, and I needed to go and do the diagnostic. Unfortunately the earliest appointment wasn’t for another three weeks, and so the earliest time I could see the specialist was March 27th.

March 27th. It’s so strange to type it out, because I can honestly say (so far) was the very worst day of my life. I remember it like a movie, a slow motion play by play of an out of body experience. I entered the specialists office with my husband and my father. My dad is a retired M.D., and so I wanted him there in case the news was bad. He would be able to explain things to me and be a clinical perspective on our side, which I really needed after the last month of me losing sleep, and researching every possible thing that could be the matter with our little one. The ultrasound started, our technician was very nice, and began by asking us innocent questions about the baby and our family, “Was this our first pregnancy?” “Did we know the sex?” etc, making small talk

That quickly stopped. she began to take notes and specialized photos, and I knew something was wrong. Statistics kept swimming in my brain, so many people I knew had done this same screening and things were FINE, the odds of it being something serious were SO low, etc. Trying to comfort myself even though I knew in my gut we were about to hear some bad news. The technician excused herself, which I knew was really the confirmation I needed, if it had been nothing she would have told us on the spot but instead she went to summon the actual doctor. He came into the room

The Doctor came in, and in a very kind but direct way told us that our baby had a form of Spina Bifida called Myelomeningocele. It was a neural tube defect that occurs during the first four weeks of pregnancy. MMC (for short) occurs during the replication of early fetal cells, and the spine does not close correctly. Our son had a lesion on his spine, that looked like a bubble, where his spinal cord and nerves were exposed to his amniotic fluid, which was causing damage to his nerves and would effect his mobility.

Even though my gut had earlier told me that something was wrong, I sat there sobbing. My dad had gone pale, he had been convinced we had dragged him along for nothing. Jesse was stunned, gripping my hand and staring into space. It was not a good day. The Doctor proceeded to perform an amniocentesis on me. For the laymen at home that is when they stick a needle into your pregnant belly and extract a few vials of amniotic fluid to test for chromosomal abnormalities.

We were testing those because we had been given a few options by the doctor to discuss. The first was termination, which legally they are required to tell everyone who comes into the office, but was heartbreaking to hear nonetheless, the second was a surgery that could be done post birth to the baby to close the legion, and the third was a little bit of a long shot, but would include an in utero treatment with a specialist in Philadelphia, that would close the legion while he was still developing, and while it wasnt a CURE, it would ensure no FURTHER damage would be done to the baby. The longer the baby was exposed to the amniotic fluid, and the longer the spine was pulling down on the baby’s cerebellum, the more damage that would be progressively done, with no way of closing the legion until after he made his appearance into the world.

So we took a deep breath, and we made some phone calls. And in a HUGE leap of faith we….. went to Philadelphia. To complete a diagnostic to see if we would be eligible to get our son some preemptive care.

And that is where I am in now. In Philly. But more on that later.