Surgery week?!

This week was supposed to be a big surgery week for Sloane, or so we thought. Sloane had eye surgery scheduled for Monday to help straighten her right eye. Since she is missing her cranial nerve, her right eye floats upwards and inwards the majority of time. We’ve been working towards this surgery since she started wearing her eye patch at 6 months old. We knew from the beginning that this eye patching game was going to be a marathon not a sprint. We started patching for four hours a day then took measurements. Her eye needed more stability so we increased patching to eight hours a day, then measured again. We would visit the surgeon every 6 months until those measurements were stable enough for the surgery. It’s taken about three years to reach the point where she was ready for the eye surgery AND there isn’t a more needed surgery demanding priority. Her ophthalmologist was planning to go into her right eye and almost tie the muscles in knots (I’m sure it’s much much more complicated than that but that’s how they explained it) so once it’s tightened the intent is that the eye shouldn’t drift upwards or inwards which will help correct the overall alignment and improve vision. So finally after the long wait we were prepared. It’s supposed to be a super easy procedure, in and out, home a few hours later and I honestly didn’t have any concerns and I wasn’t anxious about it except for all the scheduling that needed to happen prior.

Pre-Op appointment

Once we finally confirmed a date which was about a month in advance we started planning the logistics of Sloane being home for the week due to increased risk of infection. Since recovery wasn’t bad we knew we would need to craft a schedule of babysitters to accommodate our work schedules. Knowing Sloane she would be asking to ride her bike or scooter and run to the park all week. So we decided help would be best so we could save our PTO for the holidays when family was in town. We planned EVERYTHING around this week. Work meetings, appointments, trips, and guess what happened?! We received a call saying it was canceled, AFTER pre-op appointments, after medical history check ins, after all that planning they called on Friday saying it was canceled. The anesthesiologist reviewed her medical history of tumors, a tracheotomy and probably most recently having a bad reaction after anesthesia in July. I think they went running for the hills knowing the surgery center was VERY different than a Children’s Hospital OR where all her procedures have been done previously. I guess I should have thought about that, but I also thought we were graduating to outpatient rather than hospital OR’s and that felt positive. So for the anesthesiologist to gravitate towards caution I am GRATEFUL it was canceled. In the same breath I was SO annoyed. I felt like for once I actually had everything together and in the midst of planning, planning, and re-planning EVERYTHING changed.

Pre-Opt Appointment

As I sat and listened to the nurse tell me it was canceled and we will need to figure out a new time in the next few months, I realized this is how most of life is. We typically don’t plan for the unexpected disappointment of life. We don’t plan bad things happening and we sure don’t have magic 8 balls telling us “all signs point to yes” when we ask if surgery is going to be canceled. Unexpected events happen all the time. It’s our attitude that moves us past them. All we can do is prepare the best with the information we have and take it ONE STEP at a time. We can and NOT let the unexpected take us down and out which I’m afraid many of us do in these types of situations. It would have been sooo easy to freak out, be angry, and let it ruin the rest of the day/weekend. Early on in our journey these unexpected outcomes would have destroyed me for days. I would overthink EVERYTHING and be angry about not being able to control every little thing. Why did the surgery get canceled, who knows? Was I annoyed YES, am I able to see the bigger picture, I’m trying. What if something terrible happened and they weren’t prepared? Maybe this was a blessing in disguise, maybe it was just a delay. What I do know is that we have to roll with the punches of life and the disappointments and not allow that to dictate how we move forward. So much of our time is spent on focusing on things that aren’t even in our control, but it takes away from the everyday moments. It’s so hard to change your mindset but it’s so worth it when you realize how fast you bounce back from something that would have taken you days to get over. As of today I have no idea when surgery is going to be, but I do know, we will go through the same preparations as the last time and be prepared for anything.

Vulnerability

For two and a half weeks I’ve sat staring at the computer screen wondering why I’m allowing myself to be vulnerable. Being vulnerable is weird and uncomfortable and WHO WANTS TO BE THAT weird awkward person? Surely not me, but maybe, just maybe, by me being weird and awkward others might find it helpful when they are going through similar situations. I know when we were going through the thick of things with Sloane more often than not I wished to hear the words “I understand what you’re going through.” I know every situation is different but when you’re broken, you feel like you have to put on a happy face and smile when in reality you feel like you can barely function and want to scream from the rooftops. I have no idea how I’m not drinking myself to sleep or taking Vicodin to numb my fears of what tomorrow holds. I wish I could use emojis while writing, but that might make things more weird because I would insert the girl with her hand up over and over again saying that was ME, that was ME.

I know I’ve swept a lot of my feelings under the rug in order to “act normal” when inside I was grieving so many losses; I was grieving the loss of having a healthy child, grieving the loss of having a daughter that looked like me, grieving the loss of having “normal” maternity leave where I binged watched Mad Men like I did with Graham, while my only outing was going to Starbucks drive through for my Venti Soy Latte that had God only knows how many grams of sugar in it, but, since I wasn’t sleeping who cared about that! I grieved the loss of the ability to be a family of four all together and taking walks around the neighborhood. Instead, my reality was three months away from my husband and two year old while I lived in Philadelphia. My reality was watching my newborn struggle to get better hoping and praying that we could all be in the same state soon. I wanted to grieve my expectations - and I think it’s important for me to say expectations. I was disappointed in unmet expectations that I put on myself. Looking back I realize they were expectations but still you’re allowed to grieve what you thought you lost. I don’t think I ever processed and worked though those feelings which in turn created a vicious cycle of disappointment and hurt because I constantly allowed myself to hope the situation would inexplicably change back to what I expected and it never did so again I would be disappointed. I think if I started to process and recognize these emotions early on I wouldn’t have felt the constant disappointment when my expectations were not met by my reality. Instead I spun a vicious circle and allowed myself to get wrapped up in a “woe is me” mentality and didn’t allow myself to see the joy in the moments. I eventually did, but I wish I could have done it sooner.

While I was struggling internally, I smiled and said I was fine, we are fine, and Sloane is fine. I didn’t want to look different and call attention to how different we really were. At home, we had 24 hours of nursing because Sloane had a trach that needed to be suctioned, she had a feeding tube because she couldn’t swallow food safely, and had three therapies a week that came to the house on top of all the other appointments we had to take her to. I think because of what our daily life looked life I pushed those feelings under the rug and prayed and hoped for the best while ignoring our reality. When I finally allowed myself to acknowledge that THIS SUCKS and I began to process what we are going through, only then did the healing start.

All of us go through different heartaches, depression, mental illness, job losses, and so many life altering events but we don’t talk about it. Why? Why is there is a stigma against talking and being real? Maybe we feel like no one else is going through similar situations because our connection with others has become manicured versions of reality, carefully curated with the perfect filter. We feel like we are the only ones with imperfect lives and that sometimes makes us only feel worse. So to all the moms out there that are struggling because your toddler won’t eat, I see you. To all the medically complex moms that are so frustrated with finding solid home care, I see you. To all my girlfriends that are waiting for the perfect man, I see you. I know this might not help but it helped me. This is a season, sometimes long, sometimes short, but I told Graham THIS today on our way to school. If we aren’t comfortable being uncomfortable in our season of losing, our season of tantrums, our season of changing diapers, or whatever your trial is, then we won’t see the joy that is supposed to come from those HARD MOMENTS. So be vulnerable, be real, and recognize there is freedom in being who you are called to be.

If you have some time listen to one of my favs, Brene’ Brown and her TedTalk on the Power of Vulnerability it might just change your life :-)

PTSD

Parenting with PTSD. I think the easiest way to explain this is having that feeling like you’re constantly looking over your shoulder anticipating something bad is about to happen. So you’re never truly focused on what’s in front of you because you’re constantly turning, waiting, and anticipating those fears all while missing steps in front of you. Not focused behind and not focused in front.

Hopeful for a discharge soon.

I never even remotely considered that I might have PTSD until Jay’s cousin explained it to me last Thanksgiving. Almost four years ago I watched Sloane slip into two cardiac arrests after bringing her home from a three week hospital stay. The doctors let us go home because we promised to bring her back the next day to discuss a tracheostomy. We never made it to that appointment. We already spent Christmas and New Years in the hospital so we were thrilled to go home on January 1 with the reassurance from our doctors that we had what we needed at home to care for her. When we brought her home she was on heavy amounts of oxygen and looked pretty bad but we figured we just needed to make it work a few more days to figure out what course of action to take next. Little did we know her tiny body was so tired. She was tired of doctors and nurses trying to figure out what was wrong for three weeks to no avail. She was tired of trying to breath past the tumor in her airway that no one knew was there. While we were worried, we were so excited to be together with Graham. We had to split Christmas day between the hospital and my parents house and that was heartbreaking in itself. I remember slamming the door of my parents house trying to hold back tears of anger, I didn’t want to leave our two year old but I had to. Jay spent Christmas Eve with Sloane and I needed to relieve him so he could spend the day with Graham and get some rest. I was so ANGRY that I had to leave but I had no choice. I couldn’t give up on my daughter and husband. So to say we were happy to be home all together would be an understatement.

The one present I got to see Graham open on Christmas morning

As soon as the three of us got back to my parents house we set Sloane up on the floor with her oxygen tank and started the madness of opening gifts with everyone which is a HUGE event to our family. After unwrapping gifts, eating, and talking we all went to bed pretty exhausted. Jay and I were planning on taking turns sleeping in Sloane’s room to ensure she was breathing and was safe. Jay took the first shift and was catching up on highlights from the Buckeyes game when her alarm started to go crazy. He ran into Sloane’s room and picked her up: she was losing color, almost a grayish-blue, her skin was clammy, and her little body was lifeless. Her heart rate and oxygen numbers were dangerously low and dropping. He ran to get me and he quickly put her on the floor. I guess survival instinct kicked in and I immediately started CPR compressions while my mom prayed, Jay dialed 911, and my dad paced the hallway praying. As I counted 30 chest compressions along with two breaths there were thousands of thoughts flying. I was watching her numbers drop into the teens, wondering how God could let her die after everything we’ve already been through, that this moment could be the last that I spend with my daughter and this is NOT how I want to remember it. I remember staring into her eyes pleading with God to keep her brain whole if she did live. I remember all of these thoughts racing back and forth but yet I was still focused on what I had to do. With every compression Sloane just stared at me; our eyes were locked the entire time. I remember hearing my mom’s voice over Sloane, “You will not die, you will not die, and praying life over her lifeless body.” I know with every word that she declared it was an answer to prayer. To this day I have absolutely no idea how long this lasted because I’ve rarely talked about it or allowed myself to process the event. I don’t think I wanted to allow myself to remember because the pain and fear of losing her was too much for me to remember. I’ll save the rest of the story for later but watching your child slip away is something no parent should ever have to witness. It breaks you in half and brings you to your knees.

Christmas Day 2014 in the PICU

I know for myself, I avoided processing the trauma of administering CPR to my 4 month old for three years. It was easier to ignore these feelings rather than process them because of the hurt and fear. I think we can tend to do this in all aspects of our life. It’s easy to say tomorrow, I’ll do it tomorrow rather than do the hard stuff today. Whether that’s changing our diet, working out, communicating our feelings, or facing your fears head on. All it took for me was one person explaining that I experienced a trauma and “it’s ok not to be ok.” I replayed that conversation over and over and started to dissect how trauma was affecting my everyday life. I realized I was parenting Sloane totally different than I parent Graham. I was making my decisions out of heightened anxiety and fear of losing her again because I almost did. This goes back to my helicopter post. I had to acknowledge it was affecting me and the simple act of acknowledgment was what I needed to face this head on because I didn’t want my kids to be in therapy due to my heightened anxiety or fear of losing them. I wasn’t allowing joy to enter any situation because I was FREAKING out ALL THE TIME. Sometimes I still do but it’s a thousand times better. My therapist explained this so well the other day; when you experience a trauma your brain doesn’t allow you to let your guard down so you’re always on edge. So I decided I had no choice but to work through it.

Parenting little humans in general is already so hard, but throw on medical complications, illness, sickness, or anything else that causes trauma or stress it can potentially throw one into a realm of heightened awareness that probably isn’t good for anyone’s parenting ability. PTSD doesn’t allow us to feel the joy in the moments what we should be savoring. Instead it steals that and takes us down a path of “what ifs.” I know for me, what helped was acknowledging and processing the event itself and the feelings connected to the event and realizing it’s ok to ask for help. Therapy has helped, listening to podcasts has helped, and prayer has helped. I think with a combination of everything it allowed me to start the process of walking towards a new journey of hope without the burdens or anxieties of the what if’s that tend to weigh us down when all we’ve focused on is the trauma. It’s ok to not be ok because when you recognize that, that’t the first step in moving forward.

Waiting to go home

The beginning

July 16th, 2014 was the day that my heart shattered in a million pieces.  The feelings of helplessness and despair left me wondering if I would ever be put back together again.  Everyone has dates they remember; their wedding, their children's birthday, or worse the day they lost a child.  Unfortunately living in this reality we have too many dates marked in our memories for negative reasons.  While I will never understand the why, I have chosen to stop asking and enjoy the present.  Oddly enough, July 16th passed this year and it didn’t stop me in my tracks as it has in past years.  When I made it through that date I think back and smile. I smile because of how far we’ve come, I smile because there have been more joyful moments that have replaced those sad moments. I believe life is made up of these and what we chose to do with them is left up to us. So while I’ll never forget this day, I also realize that it was the beginning of us starting to understand and embrace our new future.  It gave us a glimpse of how strong Sloane is and how she was meant to be here all along.  

When I woke up on July 16 2014, I had no idea that we were walking into a day of unknowns.  I remember being anxious but not necessarily in a bad way.  I was anxious for answers and was honestly hoping to have a quick response by the end of the day.  My pregnancy with Sloane was for the most part normal. I had two scares in my first trimester and I thought for sure I was miscarrying but every time I went to my doctor they found a heartbeat and said we were fine.  It was early in my pregnancy, I think around 8-10 weeks, when the doctor confirmed I had placenta previa.  That just meant they would watch me closely but nothing overly concerning and nothing was wrong with the baby. Just lighter workouts and if it didn't go away by my third trimester which most do, they would do a c-section.  Due to Placenta Previa, I needed additional ultrasounds to determine if my placenta was moving and sure enough between 22-24 weeks it did.  All these extra scans showed the baby was perfect, the placenta previa was no longer a concern and we were left with a false sense of security.  After 24 weeks I started to gain a tremendous amount of weight but in full transparency I was eating a ton of ice cream with sprinkles everyday.  Also, everyone tells you that you carry girls differently than boys so I swept it under the rug.  Let me put into perspective how much weight I gained; every person I ran into would wish me luck and ask when the baby was due, assuming it was days/weeks away.  Sadly I was still two months away.  

After starting to get physically uncomfortable with all the weight gain, I knew I had some questions for my doctor at my next appointment.  Thankfully Jay was able to be there with me.   In hindsight we should have known something was off but we were working parents of a toddler and frankly I thought I was being a baby.  When we saw my doctor later that day I was in tears explaining the pain I was in.  He measured me and I was measuring at 42 weeks. I was only 32 weeks along.  Either the baby was bigger or I was retaining fluid which could mean a problem.  He ordered an ultrasound immediately. We weren’t prepared for what the next four hours had in store for us. Not one clue.  Also let me say this, so many people have asked how we didn't know sooner.  I think not knowing was the beginning of the many blessings we experienced through this whole ordeal.  I really believe if we were to have found out any earlier that something was wrong, the torture of “what if's” would have been worse for me to handle.   It also allowed us to be parents to a two year old who needed us which, in hindsight, I'm truly grateful for.  We enjoyed vacations and time with him without the anxiety and worry of what was to come.  While we have plenty of that now, we are better prepared for it and have learned how to adapt.      

We walked into the ultrasound room and our tech started to do our scan. Pure silence is always a bad sign. For 15 minutes she did all sorts of measurements and then walked out of the room without saying a word. In that moment I knew something was seriously wrong. I remember sitting in shock wondering what I did to deserve this and just sobbing without knowing what was wrong. My doctor walked in and I love this man because he was as gracious as can be in that moment. He simply said “there is a growth on the baby’s head/brain. It wasn’t there 6 weeks ago but it’s there now." We asked what it was and he had no idea but he made an appointment with another doctor who specialized in Maternal Fetal Medicine and he walked us over to be seen in hopes of learning more.  Thankfully we only had to wait 10 minutes and they brought us back.  A new tech started another ultrasound and mentioned a couple of possibilities. She said the only thing I’ve ever seen is a teratoma but was hesitant to diagnose that definitively since they are extremely rate. 

Now a new doctor walks in and starts going over everything. At this point I’m totally numb and freaking out. We called my parents to pick up Graham.  Jay and I are sitting in silence wondering what the heck is happening and trying to decipher what the doctor is saying. She starts off saying it’s either a teratoma or encephalocele - neither is good.  Then I'll NEVER forget her words right after: "You have the option to terminate your pregnancy, she probably isn’t going to make it."

I can't remember if I had tears at that point or was in absolute shock of the news.  In four hours we learned that Sloane had something on her head, no one knew what it was, she probably wasn't going to make it, and we were given the option to terminate our BABY at 32 weeks while she was still kicking/dancing and letting us know not to give up on her.   This girl has had a fight in her body since the moment we knew about her.   When the doctor asked me those words I knew it was bad. We decided to do an amniocentesis to do further genetic testing in addition to what we already had done and then they drained two gallons of fluid to make me more comfortable. By doing that I knew it could have sent me into pre-term labor but at that point my first though was, at least we would know what we are dealing with since no one knew.  

After the amnio, second ultrasound, and the question to terminate, we left with more questions, tears, and all the fears of “what if's.”  What was next, who was taking on our case, and where in the world do we go from here?   

My parents had Graham at our house. My best friend dropped off dinner and hugged me while I just cried and cried. After everyone left our house and we put our two year old to sleep I remember distinctly closing the door to Sloane’s nursery that I worked so hard on and wondered if I would ever bring her home to see it. That night I sobbed for hours wondering what was next and asking the question why. Why me? Why did this have to happen. It was probably the worst day of my life, feeling so out of control and with no ability to protect my unborn daughter.  Honestly when I look back on those moments they were so RAW and full of hopelessness.  Little did I know this is where the story begins. Waiting, waiting, and more waiting with lots of unknowns. Isn’t that how life is 99% of the time? I believe it’s how you handle your situation in the waiting moments that end up creating the next steps. In the beginning of all of this I asked WHY so much.  I think everyone does when faced with an extremely difficult time.  Through this,  I've learned that we aren't meant to know why.  I think if we did, it would overwhelm us so much so that we wouldn't press forward into the next part of journey.  

Beauty out of Ashes

He makes beauty out of ashes – have you ever sat around to think about what that actually means?  I have, and I know first hand out of our own pain and struggles; there is joy that might not have been found without walking THROUGH it.   I’ve contemplated this space, blog, or whatever you want to call it for a VERY long time. Back in January one of  my best friends told me I should start a blog and run a ½ marathon.  She told me I needed to set goals for myself.  I distinctly remember laughing and saying I hate running and I have nothing to say.  For some reason I’m now doing both.  At points while typing I've asked myself why, but then realized why not.  It may be hard and scary but you know what's worse.  REGRET.  So here I am attempting to be vulnerable and real about raising a medically complex child and walking this unknown path all while still trying to manage being a good wife, present mom, daughter, sister, friend, employee etc.. and let me be honest it’s HARD and lonely at times. 

More often than not, I have wished there was a road map for our journey, wishing, hoping, and praying for answers.  Four year ago when our lives were turned upside down I remember Googling some of Sloane’s conditions and there wasn’t much to read and the doctors couldn't tell us anything definitive about her future.  Instead we live in 6-month increments, with appointments and therapies in-between MRIs believing everything is stable.  What I’ve started to realize in the midst of these waiting periods, maybe it’s better this way.  I don’t want a diagnosis defining our future of what she can and can’t do.  I want to push her forward to be the best she can be.  I remember telling the doctors that she can do everything everyone else does until she shows us differently.  Guess what, so far she does everything.  We were told she wouldn’t hear out of her right ear.   When I whisper in her ear that is sutured shut and tell her she’s a superhero, she repeats back to me what I've said.  When the doctors told us she wouldn’t be an athlete because of the tumor on her cerebellum, she is starting her first soccer season this fall.   It's incredible to see a child overcome the supposed limits of a diagnosis.  So I say all of that to say this - I hope this will be a space of hope and lots of laugher and learning together how to navigate the everyday challenges or raising medically complex kids but doing it gracefully and with JOY.