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One year removed

The best way to predict the future is to create it

Abraham Lincoln

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

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

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

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

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Posted on by loreleicharms

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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Onward and upward

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

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

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

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

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

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

We are so lucky.

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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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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?