The one where she went back to work

The key is not to prioritize what’s on your schedule, but to schedule your priorities

stephen covey

So after three months of medical leave, and twenty weeks of maternity leave I am finally going back to work a week from tomorrow. I don’t quite know how to describe how I feel about it, as the thought of leaving my medically complex child at home, and commuting to work, and working my 9-5 job as if it was normal is blowing my mind. My son has changed my entire world view, my entire schedule, and all of my priorities. I feel like I have finally settled into my daily routine of being a new mom, as well as a special needs mom, and now its going to be flipped upside down once again. It took until this week to get all of his initial doctor visits, many rounds of casting, Physical therapy, a follow up surgery, and a new medication schedule, all finished. I feel like I handled all the hard stuff, and all the logistical nightmares just in time to send him off to his grandparents to have fun everyday. I realize those things were all necessities, but its an emotional challenge to do all the hard stuff, and organizing, and then go back to work knowing that he is finally ready for things like, the zoo, play dates and library story times. Unfortunately all of those kid friendly activities are scheduled during the day, for stay at home moms, nanny’s, and grandparents to enjoy. As a working mom, I will now see my child eight hours less a day, constantly be judged, and miss out on all of the “Mommy and me” classes. Not going to lie, it breaks my heart.

In reality I know I have to go back to work. Its a necessity. My job is what provides the baby’s medical insurance, which he desperately needs, as we live in a state where we do not qualify for any assistance related to his condition. My benefits are the most important thing to keep stable for him to continue being treated by his stellar team of specialists, and get the therapies he needs. I so wish that I could stay home with him, and be his weekday primary care giver, and ALSO keep my amazing insurance, but that just is not possible. I will state for the record, I like my job. I like my co workers, and I think I will enjoy interacting with adults and getting recognized for my abilities and successes as a human being, and not just a mother. There are definitely pros to going back to work, but right now is all seems so terrible and overwhelming. With eight less hours available in my day, it also means I have less time for housework, less time to call doctors, and insurance companies, and advocating for my child, which I don’t have enough time for NOW. Even as a temporary stay at home parent I still have dishes pile up, and a mountain of laundry, a lawn over grown with weeds, and get absolutely no sleep. How am I supposed to juggle all of that, in the precious few hours a day I get to see my baby boy? There really aren’t enough hours in the day. What do working moms do? Stay up until 1am, knowing that you wake up at 6am with the baby? Just let you house descend into complete disarray and chaos? Its not like I can afford a housekeeper given how many doctors we currently pay for etc. This week I am full of anxiety, and worry, and a lot of impostor syndrome. So many people keep expressing how proud they are of me and my journey, and how they think I am so brave and strong.

I don’t feel brave or strong. I feel like a bad mom. I feel like a mom who is going to go and resume her old life, and leave her baby five days a week. Despite knowing that I need this income for my baby and husband. I feel like I am going to miss a lot of his “firsts.” I will be at work when he crawls for the first time, and his first word, which probably won’t be “Mama,” since she will become the stranger who wakes him up and then puts him to bed. I want to be there for every small milestone, as the last four months have taught me how quickly babys change from day to day.

I feel grief.

I miss him already.

Spending these last few days trying to spend as much time with him as possible and deep cleaning the house. I just want to hold him, and smell him, and soak up as much togetherness as possible, before he completely forgets who I am. I would love to hear from other working moms, who can tell me that everything will be okay.

Happy Halloween!

Just a quick few photos of little Corbins first Halloween! We went as the family from Bobs Burgers. He was a tiny little Gene/Cheeseburger. Mommy went as the fun loving Linda.

We visited our Grandparents and the adults had lots of Candy. It’s precious moments like these where you forget all the scary parts, and just enjoy being a normal family and the innocence of childhood. πŸŽƒβ€οΈπŸŽƒ

Reflection

All nature is art, but unknown to thee

alexander pope

Today, we went back to Lake Park with little Corbin.

Its a large park in Hillsborough County, FL, that I frequented as a child. A few miles from my childhood home, it has lots of trails, and there are many places that one can spend time alone in nature to reflect, think, or cry. The day after we learned of his diagnosis we went here in order to be somewhere quiet and remote. We walked the nature trails so we could be alone, and cry, and grieve. We were so afraid. Scared for our little baby, and his future. I stood by the lake and wept, feeling so very lost.

This was also where on that very same day I got a phone call from the coordinator at CHOP, and scheduled for my fetal surgery diagnostics to see if we would qualify for his procedure. I was hoping with all my heart we would qualify, and give my angel baby his best shot.

Today returning to this same place I am full of joy. I cried lifting him into his stroller. So grateful he is here with us, and so proud of all he had already accomplished. The amazing odds he has already overcome, his beautiful smile, and sweet nature.

I love my little family. And we will love and support him throughout anything that comes his way.

Today instead of sad tears, we wandered the nature trails with daddy, listened to birds, were on watch for alligators, avoided puddles, and sang silly songs.

You are our everything. Love you kid

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. πŸ™‚

“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. ❀

Homeward Bound

There’s no place like home.

Dorothy Gale- The Wizard of Oz

Hello there everyone! Long time no see… er.. read I guess. Quick update, and a readers digest version of our discharge story! Per my last blog post I went home to FL for a few days to get my head together. Of course on my way TO Tampa, my husband was informed by the NICU team that we were being discharged in two days. This was amazing news, but now I was in Florida. GREAT. So I had a SUPER quick trip home, and then booked it back to Philly, left the airport bright and early on that Wednesday morning, went STRAIGHT to CHOP, and met my husband. We signed a lot of paperwork, did some aftercare discussions with the nurses and nurse practioners and then we GOT TO LEAVE. It was SO SURREAL. We were taking OUR baby home! I didn’t quite believe it. I was sure that even as we were standing on the train platform readying ourselves to board the long Amtrak back to Florida, I was sure that someone in scrubs was going to pop out from behind the train car and say, “JUST KIDDING, Takes backsies!”

There were no take backsies, but that did not mean that our initial journey home was any easier. The baby had been sent home with an apnea monitor, he was still suffering from occasional apnea due to his prematurity, and while they had all been pretty mild events, the NICU team sent us home with a monitor, until further notice, we are still currently being monitored and working with the apnea team closely to this day. (Over a month later! Hello as this is an update from the future!) We are still in serial casting for Corbin’s clubbed feet, but overall his treatment is going well.

The transition home was happy but difficult. Lack of sleep, lots of bills, and the reality of coming home was both very welcome but also somewhat foreign. My parents and both of my sisters picked us up at the train station in Tampa after a 5 hour delay in the Carolinas. At this point we were dirty, hadn’t gotten any sleep, barely anything to eat, and I was out of both breast milk and formula for the baby, so was scrambling to get home. My sister Katie was bawling as we got off the platform and loaded the car, everyone was very emotional after the last six months finally seemed to be coming to an end. Or at the very least a beginning of the NEXT chapter of our lives.

The train was exhausting. It was loud, and there was no way effective way for us to set up the apnea monitor, so we took turns napping at night, while the other parent stayed awake to watch the baby breathe. It was not very fun, as my anxiety taking the baby home was already sky high. 0/5 stars, I do not recommend. It was rough, I cannot express how terrible I looked at the end of this journey. In days (at that point) old clothes, dirty hair, smeared makeup. My parents drove us back to our house. MY HOUSE, I GOT TO BE IN AND SEE MY HOUSE. It was so magical. Grandparents and siblings watched the kiddo while we were able to take very well deserved showers.

Since then we have spent the last month at many many doctor appointments. We have had a transitionary visit at our new Spina Bifida Clinic’s neurosurgeon, who I REALLY like. He said Corbin’s scans looks amazing, and we are doing a follow up in December just to make sure nothing major has changed. He is eating like a champ, (and pooping too!) Out next big hurdle will be getting his urodynamics done at a local urologist to make sure things are ship shape. His pediatrician has been very kind, we are getting our shots, and doing normal baby things. So far he is reaching milestones. He is head lifting, and tracking, and cooing. We still need to work on sleeping through the night but we are getting there!

Mommy is happy to be home. Its hard, but its… ours ❀

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. ❀