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Quarantine

Well… where to even begin. We are currently home bound with all of this COVID-19/Corona virus spread in our home state of Florida. Jesse and I are both lucky enough to be able to work from home, so we are juggling working our normal schedules, taking care of our baby, and doing home projects and cleaning while we are here in the space anyway. I am fortunate we are continuing to get paid, I am fortunate we still have benefits, and our baby is safe at home, away from strangers and possible infection. Having a medically complex child in these times of crisis is very anxiety inducing. I have lost sleep, I have gotten stressed enough to take rescue medication. I stocked up on my child’s medications from the pharmacy in case they close in the near future. I am constantly weighing the pros and cons between staying home, and going to his appointments and therapy appointments, stuck between knowing that he needs them, and not wanting to risk infection.

In the last several weeks since Clinic, Corbin has made a lot of strides in physical milestones including rolling from back to belly for the first time! He got his physical therapy evaluation and pending insurance approval he will be going to PT at All Children’s twice a week. I was so excited for this to happen, and for him to get proactive help with his gross motor skills, only to be sad and paranoid, knowing that he would be in a facility with lots of strangers, children and adult alike, and whether I would want to risk him being exposed to the virus. I so badly want him to have his sessions, and we are all waiting for guidance, not knowing what the timeline for these CDC recommendations will be. We are limiting contact with the outside, only going to pharmacies and grocers when its not avoidable, going first thing in the morning and promptly leaving. Lots of hand washing, lots of hand sanitizer.

In a way I am very prepared for the social isolation, as less than a year ago I was on strict bed-rest after my fetal surgery. Jesse and I were stuck in our small room at the Ronald McDonald House for almost 18 weeks just the two of us, so we are very used to staying at home together and not going completely stir crazy. We get along, and have a large enough living space that if we need alone time, there are rooms we can go. I have the physical and emotional space to scream and cry, and get frustrated, but also to meditate and pray, and take the space to feel grateful. There are so many people out of work, and struggling, and full of fear, and there are so many medical professionals putting their own health at risk, and doing the best they can to help people through this dark time.

The most frustrating thing I have seen lately is the callous attitude of others who say “It is ONLY the elderly and immunocompromized at risk,” As if.. those people don’t matter? Those fringe groups matter. The elderly matter. Cancer patients matter. Disabled adults and children matter. It is a completely privileged and cruel viewpoint, and completely ableist. YES if I were to contract the virus tomorrow I would be fine, I would recover. But my elderly grandmother would not, my parents may not, my special needs son may not. I am willing to be bored for the next several weeks or MONTHS if it means those people, and others like them get a better shot at not getting infected. People need to look at the bigger picture.

So in the meantime, to try and flatten the curve, I am staying home. My family is staying home. We have been cuddling on the sofa, and cooking together, taking in a lot of family time. Mommy has watched Frozen II about three times already. Disney plus is constantly on in the background.

We are doing our best.

Wishing you love and light,

Laura

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Progress

The journey of a thousand miles begins with one step

Lao Tzu

Today was quite a day! Jesse, Corbin and I drove to the local office for Early Intervention and met with his team, and did his full evaluation. The program is designed for ages infant through 3 years of age who are developmentally delayed or at risk of the same. Corbin qualifies automatically due to his pre-existing condition and we were referred to the program by his initial hospital in Philadelphia.

As a parent, I was feeling anxious and hoping more than anything they would tell me that the baby was developing right on track, the past few weeks have been so difficult with constant visits, I just wanted some good news, especially with all of his urological testing coming up, I have been bracing myself and waiting for the other foot to drop.

We went into the office, answered a series of questions, did some exercises on the floor, looked at some flashlights, they rang a series of bells to see if the baby reacted, it was all very exciting. As a person with a background in speech pathology, that was the only category where I knew what they were looking for. I was quite confident that he was on track for language, but had no idea the type of benchmarks and standards they were expecting physically and cognitively from a baby who is barely three months of age, and in his adjusted age only a month and a half. Well…. GOOD NEWS!

According to the interventionists he is doing great! Mommy was so happy to hear! He met all his milestones minus one, and that was because baby decided to fall asleep so they couldn’t perform the test. We will try that one again next time. The head coordinator even mentioned that if he didn’t automatically qualify for the program, if he was a typical mobile child that is, he would not have qualified because his test scores were too high, and he would have not been considered “At risk.”

We will have a physical and occupational therapist coming to the house once a week, and then will look into private clinics to assist with mobility, strength and walking. I am OVER the moon that cognitively, and behaviorally they think he is doing so well. It was a bright spot in my week, and even if Monday’s testing goes terribly I have something to cling to with optimism.

A good day. 🙂

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Take a break

Take a break. Run away with us for the summer

Lin Manuel Miranda

Last week. I did the seemingly impossible and took a break from the NICU. We were going on week six, and I had completely reached my limits as not only a mom but as a human being. Every night I was spending hours sobbing, crying every time my mom called me from Florida as well. My husband (who seriously is the best thing to ever happen to me) had been consistently urging me for weeks to take a few days off and go back to Tampa to see my house and my family. I of course was extremely against the idea. The baby wasn’t consistently stable, my anxiety over leaving him would seemingly be even worse than the feelings I was having spending every single day in intensive care. I could also just foresee all the mother shaming I would experience leaving my newborn a thousand miles away, and going off to see the sunshine state and visit my dogs.

But then I did something wild. I actually left. I didn’t think I would. The baby was more stable, we were seemingly in the home stretch of waiting. He had his dad, and in order for me to heal and succeed as a person and as a new mom, I had to go. I had to leave. I had to take five minutes to get my mental health in order, and have some semblance of normalcy. On day 122 of being away from home I turned to Jesse before bed and I said, “I have to go home.” My mother had said the exact same thing to me, and between the two of them I was convinced.

Tickets were bought, and I spent a little over 48 hours back in Florida. I got to see my nursery which had been completely designed and renovated while I was away (it is COMPLETELY stunning, my Mother-in-law and husband did and AMAZING job) I got to see my pets who seemed to have thought I had run away never to return. I got to see my HOUSE, and sleep in my BED, and drive my CAR. So many little things I had taken for granted when in town, and that were so healing and rejuvenating to me. Simple tasks like using my own kitchen and laundry room, sweeping my own floor, and eating food out of my own fridge was completely surreal. I went to Target and it was a completely spiritual experience. The week previous in Philadelphia I was having a hard time pumping milk, and my supply was really starting to dwindle. While in Florida my milk was up by about 2/3, probably just due to me feeling relaxed and in my own environment. I was able to sleep a full eight hours, run some last minute errands I needed for the baby, and pump a few days worth of milk to leave in the home freezer so we would have a slight back supply for our homecoming.

I think the only downside to me coming home briefly and re-charging was I felt embarrassed about it. I didn’t really tell many people it was happening, or see many of my family and friends for the very short time I was back, because not only was I VERY pressed for time, but I was worried what people would think. I was worried how people would feel, and perceive me as a mom. What kind of mother would leave her fresh baby, with all of his medical issues? How could she be so selfish? It hurt my heart to think what people would think about me. Mom shaming is a very real thing, and the standards new moms need to achieve are completely unattainable.

I have already felt the effects of mom shaming and my kid is barely a month old. But what people don’t realize that a big part of new motherhood tends to include losing yourself. Not on purpose, but just in the whirlwind of creating a new life, and one that requires a lot more care, we forget to think about ourselves for the most part, and unfortunately so do most people surrounding the new mom too. I had spent the last 122 days being, a vessel for life, a mother, and a patient, but I hadn’t spent many of those days feeling like an individual, and not very many of them feeling like “Laura.” The entire second half of my pregnancy was a clinical blur. I myself was healing from two abdominal surgeries, and even though I was trying to make my mental and physical health priorities, everyone around me, including myself was focused on the baby. Looking back to how I was feeling last week, and how I must have appeared to my loved ones, it is not shocking that they encouraged me to take a breather. Even just two days later I feel like a completely different person. Friends I talk to everyday have remarked even my written language seems more rested and positive, I seem very much more normal and level headed. Less depressed. A huge turn around.

I am now back with my son, and will be detailing our discharge story soon. I am back with him feeling like myself. I am Laura. I am a mom. I love my baby. However, I am also a person, and a human, with thoughts and feelings, a personality, an attitude, and an independent sense of self. He is my top priority but in order to care for him, I need to also take care of me. ❤

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Its hard to be the “hard” friend

Embrace the glorious mess that you are

Elizabeth gilbert

Right now in my life, I am the hard friend.

We all have one of those, it usually cycles around between people in any particular circle. Lately, due to just the nature of my life and what has been going on, I am the hard friend. I have been the hard friend for months.

It is hard being the hard friend. For many reasons. First of being, that in order to be the hard friend, you have to be going through something difficult, and second being, people usually don’t know how to handle you. If someone in your life is in the hospital for a few days, its easier. Send them flowers, or a card, call them to check in, usually home within a few days etc. If a friend has a breakup, they usually occupy the hard friend spot for around a month or two, etc. When its months and months, or years and years is when it gets sticky.

People don’t know how to talk to me anymore. Between the baby, and the distance, and the medical and money turmoil. Even just having a baby can be isolating for many people, as their childless friends have different schedules and priorities. Younger friends still prioritize partying, drinking and dating. People tend to drift apart even in the most standard of parenting scenarios. This year has been insane for me, and people don’t know how to react. I get it. I have been on the other side of this coin. I have friends who have gone through problems and scenarios that I do not relate to. I am familiar with the anxiety of asking myself… “What do I say?”..”What can I do?” …. “What if I make it worse?” Unfortunately this anxiety usually lead to silence. People don’t know what to say and so… they just… don’t say anything. There is a certain fatigue in dealing with someone’s ongoing problems, especially when you cannot relate. It sparks an uncertainty in people that usually results in separation.

I am not writing this from an accusatory standpoint, or a high horse. Just expressing myself. I am not bitter, or angry. Just sad, and very tired. One usually has a circle who you think will be there for you no matter what, and then as you get older, or hit the REALLY big road bumps that circle seems to get smaller and smaller. This usually means that you embrace quality over quantity, however it doesn’t mean that it stings any less. It hurts. The messages spread out, until eventually they mostly disappear, the phone calls lessen.

That being said, Do I blame anyone? Its not like I am the best person to converse with right now. I’m going through a lot. I have mood swings. I have days when I feel really angry. I have days where I feel really depressed. I am not easy to be around right now. I am not the easy friend right now.

Right now I am not a quick beer after work.

I am not a movie date

I am not a jovial phone call

I am not the shoulder to lean on, most of my people have become accustomed to

I am not a lender of money

I am not a mirror selfie or a glam Instagram post from a girls brunch

I am a mess. I am tears at 3am. I am hospital coffee. I am living in the same four outfits. I am dirty hair and no makeup. I am under eye circles. I am gut wrenching sobs in the shower when I hope nobody else is awake.

Unfortunately messes need people the most. They require the most clean up.

I am working on becoming my own mop. ❤

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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.

Posted on by loreleicharms

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

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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.