Posted on by loreleicharms

“Down” Time

I’d like to be the ideal mother, but I am too busy raising my kids

anonymous

Oh, hi everyone! It is now October 2019. Baby Corbin is now 13 pounds, and 3 months old. I cannot even believe that we have come this far, and that we are in our own home and thriving as a family. Baby has finally figured out toys, loves books, still hates baths, and has moved on from leg casts to his boot and bar for his Ponseti corrections. We are about two weeks away from being off of apnea monitoring which is going to change mommy’s LIFE. He is gaining weight, and growing big and strong. Baby is.. ALMOST sleeping through the entire night, we are so close, and mom and dad are SO EXCITED. Big hurdles are being overcome all over the place.

Overall we are doing great. I have received so many nice messages from people reaching out about how I am doing. I am.. okay. Not amazing, but I am doing okay. I have been juggling so many of Corbin’s appointments that I think I neglected my own mental health for slightly too long. For the record, I do have a therapist, she is amazing, we work on talk therapy and CBT, and she really helps me keep a level head. My schedule was crazy and we just kept missing each other. I spoke to her FINALLY last week, and what a difference in my mood after even just one catch up session. I really need to make sure to keep that standing appointment, the difference in my mood and functionality is huge. We discussed my anxiety, my body image, and my imposter syndrome related to motherhood.

That is my biggest hurdle currently. I don’t feel like a good mom. I walk the walk, I do everything I need to do and I still have this nagging feeling like I am failing my child. (Which is.. just… inaccurate, Why do I feel this way?) I am not sure if its lingering guilt over feeling like the baby’s condition is my fault, or just the huge load I feel related to staying on top of all medical schedules, but most of the time I feel like I am drowning. Over the last several weeks we have had a pediatrician visit, specialist appointment, or imaging appointment every single day. I can still not drive on my own, and am reliant on my family for rides. It is tiring, and I feel like a burden. I am frustrated, I am fighting with insurance companies, all the while trying to exercise, eat at least a few vegetables, and escape my constant post partum body image woes. Overall my little one is doing great, but whenever I get less than stellar test results, or medical opinions, I get very upset and take it very personally. To a level that is really unreasonable. I think the over reaction stems from the fact that this is my entire life right now. For example, after over a month wearing the Pavlik harness to try and correct the baby’s bilateral hip dysplasia, only one side was corrected, the right hip had made absolutely no progress at all. I sobbed. Why did I sob? It isnt my fault. The baby was born breach, this treatment isnt always effective. It wasn’t like I was sitting their pulling the kids joints out of socket. This was completely out of my control. However, when your entire schedule is based on treatments, and you put in the work, you so desperately want results. The results don’t always come. You get sad. You get mad. You grieve. You move on. We are trying a different type of brace, we will try again.

The next big “test” we have coming up for the baby is his uro-dynamics testing. They will see how his bladder is functioning and test for any kidney reflux or complications. If he is not fully emptying we will discuss the possibilities of medicine or catheterization. I am so upset over this. I am almost PRE upset, which both myself and my therapist agree is a waste of my time and energy. Why am I letting my anxiety live through things twice? I am working myself up over something that has not yet happened, and assuming the worst. In reality I will do whatever medical intervention is needed to keep his kidneys as healthy as possible. Over 2/3 of Spina Bifida children require some sort of bladder intervention, I am prepared to do what I have to do to keep him healthy and safe. I just am enjoying my time with him as a relatively normal baby, our time together is perfect, and I think facing another medical diagnosis is not something I am quite emotionally prepared for JUST yet. I dealt with clinics and meds for month and months, and I finally feel normal. I don’t want to deal with it. I have to, so I will…. but I don’t WANT to.

I WANT to take my kiddo to the zoo, and the library, and Disney. I want to spend time together in the pool, and the park, taking walks and looking at animals. I am still at the mercy of others for transportation, and with only about three weeks left of maternity leave, I am mourning the fact that my time off was exceptionally clinical, and I am sad that most of our time together has been spent in hospitals. This is selfish, I am aware. It is valid. I am aware of that as well. I am consistently burdened with self awareness. It is both comforting and infuriating.

My baby is happy. He is relatively healthy given the incredible odds against him. He has a good mom. He doesn’t have a FUN mom right now. He has a mom who makes him take vitamins, and get a lot of sleep, and wear his orthotics even though they bother him. He has a mom who makes sure he has enough antibiotics AND probiotics. He has a mom who obsesses over his gut health, and annoys insurance companies, and tries to advocate and educate the world about the strong and beautiful children in this country who have disabilities.

One day we will get to the point where I can be a “fun” mom. We will get there eventually. I know we will. I cannot wait. But for now, I will have to settle for effective, and hard working, and scared. But also loving. So incredibly full of love.

Love you Kid. ❤

Posted on by loreleicharms

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. ❤

Posted on by loreleicharms · 4 Comments

Posture

My neck, my back (lick it)

KHIA

Obviously the quote above is meant to be a joke, and warning in advance today’s blog is going to be a bit of a vent session. So if you aren’t interested in me being a whiny baby, I apologize.

Lets talk about boobs. We all have them (Well… about half of the population anyway) Breast pumping post pregnancy has been very difficult. I was attempting to pump within one hour of Corbin being born, per the recommendation of our lactation specialist. The first two to three days I was pumping every two hours, even through the night in order to try and stimulate milk supply, because not only was my baby in the NICU and not physically with me, but also my body was supposed to be pregnant for seven more weeks, and wasn’t quite ready to start that process so soon. My body was very confused. Luckily by mid week I was producing droplets, and then colostrum, and then milk for the baby! Which was great. I am still pumping every three hours or so, and Ill take a slightly longer break overnight for about 4.5 hours so I can attempt to get some REM sleep, but overall I am very tired, literally… all the time. The first few days between the lack of sleep and the post C-Section drugs I felt like I was having hallucinations. Those day are literally a blur, and I have pockets of lost time that I do not remember at ALL.

As any of my fellow moms can attest, when your milk finally comes in, it is… a little overwhelming. I have always been a chesty person, so to go up at least one cup size overnight was really shocking. I kept looking in the mirror, bewildered and having a mini episode of body dis-morphia. I remember showing my husband and his exact words were “Oh good lord, what are those, and what happened to you?!” As of now, luckily I have been able to supply enough milk to the NICU to feed the baby. Which is awesome and I am very proud of, but its hard to keep the supply up without being with your baby all the time. As that is what normally gives your body its cues, and as of today I have been unable to try to nurse nipple to mouth. The baby is still getting a small amount of breathing support and until his tube is out we cannot work on latching. So I pump, all the time, constantly to try and combat that.

My posture has been… TERRIBLE. Posture is something I already actively work on in my normal non displaced pregnancy life every day. My mother has told me to put my shoulders back everyday since childhood, my dance teachers would always yell at me, etc. In my 20s I started doing yoga fairly regularly, which helped a LOT, but I have been unable to work out since fetal surgery. I also work an office job, so back in FL, I would try and stretch consistently to avoid lower back pain or hunching related to working in front of a screen everyday. Since beginning to pump… my posture has been… completely awful. Between the heaviness of my breasts, fatigue, and just the placement of the suction cups I look like a hunched over witch, or a hag. I look like the old woman who tried to convince Snow White to eat the poison apple.

Last night my back hurt so terribly that it was hard to sleep. I cried out of exhaustion and frustration because I couldn’t sleep due to the pain, and then by the time I maybe would nod off my alarm would go off to pump again, and of course, pumping really hurt, and then my back would hurt again. Lather, rinse, repeat. After about round three of this, I shuffled over and fought through the fog of exhaustion to take some Ibuprofen. and got down on the floor to try and do some yoga stretching hoping that would help. My husband eventually woke up to my tears, and like the rock star he is, he tried to give me a back rub and massage out some tension around 4:30 am. Eventually I fell asleep again, and awoke around five hours later, which then caused another hormonal breakdown and panic because I was sure that taking TWO 4+ hour breaks between pumping would dry up my supply (Something that had seemed to dip over the last week anyway) and I would be ruining my chances of breast feeding long term due to this back pain issue, and me not waking up in time to pump again. I felt like I was sabotaging all my weeks of hard work, because said hard work was making me tired and grumpy and physically spent.

So what is the point of this blog? Nothing other than an outlet for today’s post.

I am tired. My entire body hurts. After this I am going to go back to my cycle of child’s pose, cat and cow position. Trying to stretch everything out. I took one of my remaining “good pills” given to me after C-Section, which I was trying to save in case of an emergency or a really bad day. I guess last night and today was said day. I will also attempt not to cry again until at least tomorrow (no promises!) Later on I will go see my baby and none of this will seem as important, because he lights up my heart and my mood every time I see his little face. He is worth all the hard work, and the late nights. but.. MAN. Being a mom is no joke. For all my exclusively pumping or breast feeding moms… kudos to you. This is some HARD WORK.

If anyone has any good stretches or advice, the comment section is open.

Posted on by loreleicharms · 4 Comments

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??

Posted on by loreleicharms · 3 Comments

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!

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Posted on by loreleicharms

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.

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

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?