The Never-ending Story

Time flies over us, but leaves its shadow behind

nathaniel Hawthorne

Yesterday marked four weeks since Corbin was born. We are now on week five of NICU. It feels never ending. Some days are very good, and some days are very NOT good. When the baby has a good day, I have a good day. I feel like that is a specific aspect of parenting that will never go away. All of the baby’s current issues, the ones keeping us from going home (That we know of) are due to his pre-maturity, and not his Spina Bifida. Everything related to his Spina Bifida currently is going as well as they could for the most part. We had a recent brain and spine MRI, that looked awesome. His Neuro surgeon was very happy with his brain scan, and his healing. He related that he wants to see us in six months, and then again at a year, to make sure kiddo is doing well.

He is getting the hang of oral feedings, but gets tired easily and so the amount isn’t consistent, which is a big thing the Neo-natologist will look for before we can go home. He was taken off all breathing assistance today, but we have made that step before to then be put back on 12 hours later. We had a really low saturation dip earlier this afternoon, and I am anxious about the same. They were unsure if it warranted putting him back on support or not. Tomorrow we are taking a class on how to replace and feed through NG tube, as we may be discharged with him still partly tube feeding, they also are up in the air about an apnea monitor. He is currently being casted for his club feet, and his feet were SO swollen and bruised this morning when they checked on him that they decided to give his little lets and feet a few days off to try and heal. They looked so painful, and while they didn’t look like they were bothering him, it broke this mom’s heart, and I am worried about it leading to skin breakage and or infection. That will push everything back even farther, and I dont want to push any orthopedic timeline back even further for the little guy. Overall today was wrought with a lot of steps both forwards and backwards, and I am feeling extremely frustrated.

Some positives today, the baby is now wearing adorable little outfits. He is allowed to have crib toys like soothers, and mobiles, which he loves! His favorite is a little Baby Einstein Aquarium that lights up, makes water movements, and plays classical music. He is awake more often now, which means we get a lot more eye open time, and can see his little smiling face and touch his chubby little cheeks. We are allowed to do more of his care now that he is hooked up to less equipment. I’ve never been so happy to change poopy diapers! We found a collection of baby books and have been able to read to him while he is awake, I especially love when my husband Jesse reads to him and does all the voices. It makes my heart explode to see them bonding, and the baby smile at the sound of his voice.

So there have been some positives this week! Lots of ups and lots of downs. I feel like a metronome with everything giving me whiplash. Emotional backs and forths, monitors constantly beeping, loud noises, no sleep. Lather, rinse, repeat. I am lucky he is in good hands, I am lucky he is safe, I just so badly want to be done with this chapter of our family experience. I want to flash forward to family dinners, and bedtime stories, and picnics, and swimming lessons, and be away from the constant hum of hospital monitors, and the lingering smell of hand sanitizer.

We have been in discussion with the Nurse practitioners about discharge timeline. We are going to get lessons on the monitors and NG tubes in case we have to go home with them. I would really prefer not to, which could also mean more time in NICU, so its all very overwhelming. Do we go home with monitors, so that we get to go home. Do we stay longer. What do we do.

I feel like I live in limbo. I so badly want to take the next step.

Please be strong baby, I love you! You are doing amazing, mommy just wants to go home and start our life together. You are incredible. ❤

NICU

Sometimes it’s okay if all you did today was breath.

Anonymous

Tomorrow baby Corbin will be 3 weeks old. Three entire weeks! I cant believe it! Time is basically meaningless to me as I have been in a perpetual cycle of pump/nap/pump/visit baby/pump-repeat over the past twenty days. The longest stretch of sleep I get is between three to four hours, as I am trying to keep my milk supply up so that the nurses constantly have enough for him to feed on, since I cant nurse at this time until he is off of breathing support. This little guy is a fighter, we are still working on breathing consistently on our own, as well as gaining some weight, and feeding by mouth. The last few days he has made TREMENDOUS progress, but last week was ROUGH.

When the baby has a bad day…. MOMMY has a bad day. I spent most of last week sobbing, especially at night. It is so hard to not have my baby with me at night. I know he is in the best care possible, and even though we are only a mile away at the Ronald Mcdonald house, it feels like a continent away to this new mom. I cannot wait until I can bring him home to his little room, and to his house, and introduce him to his loving family and pets. The days when he struggles to breathe and I watch his monitors fluctuate, cause me a lot of anxiety, and I have spent many a day crying in the lobby of the CHOP NICU. Luckily our care team is completely amazing and I am constantly checked on by our social workers, nurses and coordinators. These feelings are valid, these feelings are normal, what I am feeling is alright, and taking care of myself is okay. As much as I want to constantly be by the baby, many people have encouraged me to rest while I can. These are the BEST babysitters in the world, right? But my pumping schedule keeps me from resting TOO much, although I try. The time has made it possible for Jesse and I to make lots of phone calls, and work on transition of care when we go home to FL, and try and get our many ducks in a row while the baby is still in the hospital. Lots and lots of appointments in our future!

A lot of people have asked me how I feel, and I don’t know how to answer them. My primary feeling right now is … exhaustion. I am tired. I am weary, and am running out of steam. I feel as though I have been strong, and holding everything together for months now, and without my baby able to be with me I feel like I am getting closer and closer to falling apart. Its like I had a stored amount of energy and strength and its slowly dwindling. I feel like a daisy at the end of a long summer, as it succumbs to the heat and moisture and begins to wilt and rot. I am consistently reminded that I am SO CLOSE to the finish line. I am a super mom. I can do this.

I can do this.

I can do this

I can do this.

Right??

Independence Day

Well Everyone…What a crazy few weeks we have had! The baby came! Surprise! Our C section was scheduled for the 30th, but our little guy came early, on his own schedule on July 4th, 2019. The picture featured above is the first one taken by my husband after his grand debut! My water broke unexpectedly in the very early morning of the 4th, and by 11am EST we had decided to go ahead and get him out! Little Corbin Angel was born midday around 1:47 pm EST, and we instantly fell in love.

Mommy spent three days inpatient in that SDU and then was released back to the Ronald Mcdonald House. I am feeling pretty good all things considered. Between pumping milk every two hours, and shuttling back and forth to the NICU, I am remiss that it has taken this long to give you all an update! But despite his early arrival, baby is doing very well. He was born at a good weight, Five Pounds and six ounces, his heart and brain are looking great, and we are working on breathing and eating on our own, which is common with premature babies of this gestational age. So far we are emptying both bowels and bladder very well, and our labs have all looked really good! He came out crying, and moving BOTH LEGS! This is especially amazing, as pre birth we were really not sure what his functional mobility would be at in one of his legs. Little one is already crushing expectations and making his parents very proud. We are waiting to be released from the NICU pending certain milestones, and working on transferring his care and making phone calls down in Florida to make sure everything is ready Doctor wise for when we get to go home.

HOME… H-O-M-E… I am SO EXCITED. I cannot WAIT TO GO HOME. I want more than anything to be home with my baby, it makes my heart ache. Our NICU stay, while mild in comparison to many other families, has been so hard on me emotionally. Probably a mix between situational stress, postpartum hormones, and general feelings of displacement and home sickness, I have been quite a mess. I was so used to having my little one… literally inside me and with me at all times, that the transition to having him sleep not only away from me, but in the hospital and hooked up with tubes and monitors was very jarring. Some days are better than others. Some days I am fine, and continue to keep it all together and be a strong mama. Other days I am embarrassed to say that I cry for hours, and get emotional over the distance between me and my baby, and my home. I want so much to be able to nurse him, and take him back to see his family, and puppy brothers and to be back in our family home and town. We are probably in for several more weeks of waiting and NICU time before that is possible, and I am hanging on by a thread. I know I need to suck it up and remember that in the grand scheme of things a few weeks is the blink of an eye, but I just so badly want this chapter to be over. I feel like my entire pregnancy has led to this moment, and I want to be able to move on with our lives (Well at least until we come back for his yearly check up) Everything feels so.. clinical currently, and I am so emotional and in mommy mode and the two just are not meshing.

This kiddo is… CUTE. I know I am biased, but I am TELLING YOU he is the cutest little thing. (Pic below) I never knew I could instantly love another person as much as I love this little guy. I hope he always knows how much I love and would do anything for him. I would go to the ends of the earth for this tiny and perfect human. His smile melts my heart, and sometimes when I look at him I burst into tears. Not out of sadness but out of pure aw and appreciation. I just cant believe he is real, and here, and in my life. Welcome to the world my little Corbin! You are in for a wild ride my love!

Image may contain: one or more people, baby and closeup



Holland?

Today was our last day of the Mama Care pre-natal class at CHOP, and it was a surprisingly emotional afternoon. I didn’t expect to be so sad it was ending, and I didn’t expect the subject matter to hit me so much today. I think I cried a total of three times, even though it was a relatively GOOD day. The following bit of writing was not written by myself, but was shared by one of our Midwives, and it was all the words I wanted to express but didn’t know how to. I’m glad someone DID though, because now I can direct them to the same.

So if you were ever one of those people who wanted to ask, “Laura, how are you feeling?” “What is going through your head?” “This seems SO hard, what are you going through emotionally?” See below…

WELCOME TO HOLLAND

by
Emily Perl Kingsley.

c1987 by Emily Perl Kingsley. All rights reserved

I am often asked to describe the experience of raising a child with a disability – to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It’s like this……

When you’re going to have a baby, it’s like planning a fabulous vacation trip – to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, “Welcome to Holland.”

“Holland?!?” you say. “What do you mean Holland?? I signed up for Italy! I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.”

But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay.

The important thing is that they haven’t taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It’s just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It’s just a different place. It’s slower-paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around…. and you begin to notice that Holland has windmills….and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy… and they’re all bragging about what a wonderful time they had there. And for the rest of your life, you will say “Yes, that’s where I was supposed to go. That’s what I had planned.”

And the pain of that will never, ever, ever, ever go away… because the loss of that dream is a very very significant loss.

But… if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things … about Holland.

Maternity Shoot

You don’t take a photograph. You make it.

Ansel Adams

We were able to do a mini maternity shoot last week, shot by the lovely BGB Creative (https://www.facebook.com/BeeGoesBuzz/) who was in Philly to visit! We found a little hipster spot to take some shots, and then got brunch. I was overjoyed as it was something I was 100 % positive we weren’t going to be able to do while being displaced from home! So happy it fell together.

Some of our favorite shots below! Happy we will have these to frame and show the baby when he gets a little older.

Mason’s Voice

So this entry is to thank and spread awareness for the amazing Mason’s Voice foundation run by Baylee and Louis Joseph. Baylee received fetal surgery at CHOP just like me! She is a fellow Florida mom, and reached out to me when I got my diagnosis and was in the process of setting up things with CHOP. We spent weeks communicating and texting and she was an incredible blessing, as I was feeling so lost and caught up in a whirlwind. She explained to me about her inspiring story, and her incredible daughter Mason. Mason is not only completely beautiful, but as also so far exceeded all of her doctor’s expectations! She is doing amazing! She leads a happy and fulfilled life, full of love from her amazing brother, parents and support system.

After speaking to Baylee and Louis for a few months, we were the very first recipient of the Mason’s Voice donation for fetal surgery families. I cannot express how completely grateful and happy we were for this truly amazing gift. I was overwhelmed with emotion.

Please check out the video of the same below, when I learned the news! I have also linked the foundations Facebook page. Please donate if you can, they do such amazing things for Spina Bifida babies and families and are a true blessing of a family. I am eternally grateful to them, as is my son.

https://www.facebook.com/MasonsVoiceforSB

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?

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

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 ❤

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: