Wednesday, August 26, 2020

A Year Later...Connor's Passing

 As we approach the one year anniversary of Connor’s passing, I find myself more and more wanting to write down what happened during that time.  While part of me thinks there is absolutely no way I could forget the worst day of my life, I also know that some of the memories are starting to blur.  Whether that is due to time or my brain trying to protect me, I’m not sure.  This blog post is mostly for me so I can ensure I have a written record...as you can see it is extremely detailed and long.


Let me start off with a few things that may seem odd.  In reflecting back on Connor’s passing, I can’t help but be thankful.  Not because he is no longer with us (obviously), but for many different reasons.  One, we couldn’t have been in a better place. Connor was in the PICU and there was a nurse and respiratory therapist in the room when things went south.  While part of me still wishes I had noticed something before they did, I am thankful we were where we were.  Two, I’m thankful both Matt and I were there.  This goes along with reason three.  Matt and I knew that the odds were we would outlive Connor.  One of my greatest fears was something happening to us while he was still alive.  Connor required 100% care and while we do have family members and people in our lives who helped with Connor, no one knew the ins and outs of everything like we did.  That being said, we knew that Connor’s life would likely be short.  If I was ever at a funeral, I always thought about what Connor’s would look like. While that may sound incredibly morbid, it was a reality for us.  While Matt and I rarely spoke about this...I couldn’t without crying, it was something that we likely knew we would one day encounter.  I am thankful that we were both there.  Connor wasn’t at school, he wasn’t with our family while we went out on a date, etc.  We were both able to be there to support one another and to be with him in his last moments.




Connor's 1st (and only) Day of 1st Grade

Leading up to his PICU stay, Connor attended his first day of first grade on Wednesday, August 21.  Matt dropped him off and took some pictures (which we will forever be grateful for) and I picked him up from school.  If I remember correctly, he had a great first day.  Later that evening, it was Matt’s turn to stay up.  [We had a system in order to help guarantee some sleep for one of us every other night.  While Connor himself would typically fall asleep before 8:00, he had a last feed of the day that would usually start at 9:00.  One of us would stay up and run this feed and go to bed later while the other would go to sleep early.  If it was your day to go to sleep early, that meant you were on “Connor Duty” that night.  So whenever he woke up, I would get up.  Sometimes that would be 2:00, sometimes not at all.]  Matt said Connor woke up coughing that evening.  The following morning he was coughing a lot and we made the decision to keep him home.  This was day 2 of school so Matt took on staying home with him (as a teacher, there’s never a good time to not be at work, but the first few weeks of school are really tough).  




Cuddles with Daddy


At MUSC After Hours

Connor ended up staying home on Thursday, August 22.  Connor had a pretty good day without a fever (his highest temperature that day was 99.8).  We kept him home the following day (Friday, August 23) and Matt took him to the pediatrician (he had a fever at this point of 102.2).  Typically, we were those parents that would take him to the doctor if he had a fever.  He was incredibly susceptible to pneumonia and would often get ear infections as well.  At the appointment, his lungs sounded good and his ears looked good, but they started him on antibiotics just to be safe (again, highly susceptible to pneumonia).  They also did a viral swab as well.  Connor’s fever continued that day and he wasn’t a happy kid.  On Saturday, we were both home and noticed a lack of urination.  His fever was improving, but this was (of course) a new symptom.  We ended up taking him to MUSC After Hours on Sunday.  If I remember correctly, he got a chest x-ray to rule out pneumonia and Connor seemed in okay spirits.  We got some smiles out of him and were sent on our way.  I ended up emailing my principal that evening to tell him that Connor had been sick and Matt had been staying home with him.  I wanted to let him know that if it continued throughout the week, I would need to stay home and let Matt go to work.  I knew it wasn’t an ideal time to be out of work (the first week of school), but it is what it is.



When we first arrived in the ER


Blood Transfusion: Before and After;  This is why I will be a staunch advocate for donating blood.

Connor's last (precious) smiles

On Monday, August 26 Matt kept Connor home.  Matt texted me around 8:00 and told me Connor briefly woke up and fell back asleep.  This was VERY unlike him.  Connor is usually up and ready to start his day early.  Matt was able to get a 9:45 appointment with Connor’s pediatrician.  However, he realized something just wasn’t right.  He was trying to get Connor to wake up to go to the pediatrician and he really just wouldn’t wake up.  Matt called me and I left work (thank you to my amazing coworkers who basically kicked my crying self out and took care of everything for me).  Matt decided against the pediatrician’s office and instead planned to take him straight to the ER.  I beat them down there and was waiting on Connor at the entrance.  When I checked in with him, they took us straight back and a team of probably 8-10 doctors and nurses came flooding into Connor’s room.  They asked the standard questions that we were used to answering.  One question was about whether he was having bloody stools.  We told them that his BM’s had been darker, but that we attributed it to the antibiotic.  They took a sample and it showed up as having blood immediately.  Basically, Connor was losing blood in his stools.  They ordered a blood transfusion which seemed to take forever.  Connor finally got hooked up for the transfusion and we were admitted to the Pediatric Intensive Care Unit (PICU)...our 2nd time in this unit in Connor’s 6.5 years.  Before, Connor was in an open bay, but this time we were in a room.  Once Connor got some blood in him, his color started to improve and we were getting more of a response out of him.  The plan was to do a colonoscopy and endoscopy in the next few days to determine where the blood was coming from.  We stayed the night down there and I am extremely thankful for our nighttime PICU nurse who allowed me to stay in the room with him (generally, parents are not allowed to sleep in the PICU).  It turns out it was my last night with Connor.  Connor didn’t really sleep at all and his breathing started to get worse.  It was reminiscent of our hospital stay in June 2019 where Connor could only seem to breathe in one position (perched up against my cheek).  I even tried crawling in bed with him and laying like that, but he was just so uncomfortable.  


On Tuesday, August 27 the doctors came around for rounds.  During rounds, Connor was not happy and honestly seemed in pain.  The breathing issues were new and troublesome.  They no longer felt comfortable cleaning him out for the colonoscopy and endoscopy as they didn’t want to sedate him if he was already having trouble breathing.  I suggested Afrin and a racemic epinephrine to help with his breathing.  This is what we used back in June and it helped immensely.  The doctors agreed and once the orders were in, the respiratory therapist came in to give the racemic epi.  Connor had finally seemed to settle down and I thought he was resting comfortably (after all, he hadn’t really slept well the night before).  The respiratory therapist was using a very small suction tube to suction his mouth and nose.  Connor didn’t seem to be disturbed by it, and again, I chalked it up to him finally settling down to rest.  In hindsight, Connor was slipping away before my eyes.  While the respiratory therapist was doing that, the nurse was trying to find a good place for his pulse-ox monitor.  She kept trying it in different places and just thought it wasn’t picking up.  


Before I knew it, there were all sorts of doctors, nurses, etc. in the room.  Matt was in the parent room checking in with work when I texted him to get in here now.  The chaos started around 10:50.  The next 40-50 minutes were an absolute blur.  I overheard phrases such as “Get the chaplain,” and "We need to all stop talking so we can hear Dr._____."  Matt and I were moved out into the hallway to watch on as the PICU staff tried for the next 40-50 minutes to revive Connor, doing CPR the whole time.  Connor was intubated at some point as well. There are a few things from that time period that will forever be etched in my memory.  Looking Matt in the eyes as we both understood what was happening.  Texting our families to come down since they were doing CPR.  Seeing the PICU shutoff for parents and families to enter (we were the very first room on the left as you walked in).  Watching in sheer awe at this well run machine tried desperately to save Connor’s life.  One doctor was in charge, someone was prescribed to take notes.  Connor was given another blood transfusion as well as plasma.  Doctors were constantly rotating who was giving CPR.  He was given many doses of a drug to shock his heart back into working (I can’t remember the name, but I want to say epinephrine).  At one point, Matt asked the doctor who was in charge how bad it was on a scale of 1-10.  She said a 99. She said if he were able to recover, he would most likely be on life support.  We didn’t want him to suffer anymore and told them to stop.  They allowed us in the room and I remember hearing this scream of emotion as I hugged Connor.  I assumed it was the hospital staff, but Matt’s parents had just arrived.  My parents were still on the way down there and I called them to tell them he didn’t make it.  I did the same with my sister who was trying to park.  All of our families came down.  We were given as much time in the room as we wanted and someone from Child Life came to see what we wanted.  We chose to get two sets of hand and footprints on canvas as well as an imprint of his hands and feet.  It was awful and I felt absolutely numb.


This brings me to one of the most unpleasant parts of this (aside from the death of our sweet boy).  We were informed that anytime a child dies, the coroner has to come and investigate.  We thought it was odd, considering he died in a hospital and doctors had done everything in their power to revive him.  It took forever for the coroner to arrive.  When she did, there was a detective as well.  We were not allowed to be in the room with Connor while they did their “investigation.”  I also would like to note that Connor couldn’t be disturbed.  His breathing tube had to remain in place, his g-tube connector, which was filled with blood, had to remain connected, and the probes on his body had to stay until the coroner came and the autopsy was done.  After their time with Connor, they met with us in a small room and interviewed us.  We had to go through the days leading up to what brought us into the hospital and review what happened earlier in the day.  Both the coroner and detective were very understanding, but we just felt so violated.  The coroner also asked for our blessing to do an autopsy.  We did not want one, but were told we didn’t have a choice and that she hoped we would give her our blessing.  It was already the worst day of our lives, and we didn’t understand the in depth investigation.  Not to mention, it was like as soon as he passed away, he was no longer ours to make decisions about and for.  Shortly after they left, we got a phone call that the coroner had to come and visit our house.  Instead of staying to support us, Matt’s parents had to go and let this stranger into our house for her to take pictures of things.  Again, she was very nice and compassionate, but to say we felt violated is a huge understatement.  


Eventually, Connor was ready to be wheeled down to where the autopsy would take place the next day.  Matt and I (as well as the nurse we had for the day) walked him down as far as we were allowed to go.  We were assured the autopsy would take place the next day.  Matt and I numbly packed up the room.  It was incredibly surreal to wheel his empty wheelchair out of that hospital.  Matt and I drove seperately to the hospital, so we were alone on our drives home.  My music in the car was already off and I cried basically the whole way to my parent’s house.  My Aunt Deloris and cousin Angela brought food over for us.  Neither of us were hungry, but I knew we needed to eat something to take care of ourselves.  We spent some time at my parent’s house along with my sister and then drove home separately.  Again, it was a grueling car ride home.  One of the hardest things was walking into our house.  It was SO empty.  We no longer had Pandora’s Toddler Radio blasting.  We both wandered around aimlessly with no idea of what to do.  We eventually showered and managed to fall asleep.  I was so emotionally drained it wasn’t hard.  I woke up early on the morning of August 28 and just cried.  My internal alarm clock hadn’t gotten the message that Connor would/should be waking up any minute now.  Matt and I decided to get up for the day.  We ate breakfast and then went down to MUSC.  Even though we couldn’t be present for the autopsy, we just wanted to be near Connor.  Interestingly enough, we saw a couple of the doctors from the PICU who I’m sure thought we were odd for being down there.  We also were sitting on the benches in the MUSC Horseshoe when a familiar face hopped out of a car.  It was Mrs. Washington from the Webb Center.  We hugged her and I still can’t quite believe we saw her.  We spent most of the day wandering around aimlessly.  We took a few walks around the route we used to take when Connor was in the NICU.  We also may have stalked the autopsy area.  We saw a vehicle for Miracles in Sight.  We had been contacted by them to see if we would be open to donating Connor’s eyes for research and we had agreed.  Finally, we received a call that the initial autopsy was completed.  As for the results, there were a lot of things that we were told, but none of which pointed to why Connor lost his life.  Due to his neurological issues, we were told his brain would be saved to be examined.  Again, this was not something wanted to happen, but it appeared we had no say so anymore.  We also were in touch with family that day and knew they would want to see us and be around us.  I asked my mom if her and Matt’s mom could just handle it.  We didn’t care where we were, who was there, or what we ate.  After we received the report from the coroner, we went to Matt’s parent’s house.  There, we were surrounded by family.  It was nice to have people around us, to let us talk about him when we wanted, to support us as we cried, and to help take our mind off our new reality.  It was more helpful than they probably realized.  On our way home, I got a call from a number I didn’t recognize.  It was the doctor we saw at After Hours on Sunday.  She actually used to work at Connor’s pediatrician’s office and she had heard what happened.  I wish I could remember the specifics of our conversation, but it truly meant so much that she called to talk to us.


On Thursday, August 29 we met with Stuhr’s Funeral Home to determine what we would be doing in terms of Connor’s body, a service, etc.  For our meeting, we took some clothes for him to wear during the open casket viewing.  We knew we wanted him cremated so he could be at home with us (we also planned to get some jewelry that would allow us to keep some of his ashes with us).  We also planned to do a Celebration of Life service and we wanted Connor there for that.  This meant he would need to be embalmed as well.  We picked out the urn we wanted (we also got 2 small urns for our parents to have as well).  We picked out some bright, beautiful flowers to go on his casket and also picked out a small casket for his sweet body.  We decided on a visitation and service time as well.  After we left the funeral home, we went to Matt’s parent’s house.  My parents met us over there and we met with the minister at the church where the service would be held.  We discussed what we wanted and the main things that we cared about: us speaking, a video slideshow, it being considered a celebration of life instead of a funeral, and singing one of Connor’s favorite songs (ironically the last song we ever got a smile to on August 26).  A picture from the obituary was selected as the cover, but I wanted more, so I created a collage to go on the front cover of the program.  


Afterwards, we came home and I started working furiously on pictures for the slideshow that would be rolling through at the visitation on Friday.  It was towards the end of me accumulating pictures that our hard drive stalled out on us.  This contained pretty much ALL of our Connor pictures and videos.  I finished up and we took the flash drive with all of the pictures up to the funeral home. From there, I started working on Connor’s Celebration of Life video.  Due to the hard drive going out, I was limited to Facebook pictures (thank goodness for FB!) which still took forever to accumulate.  I went through my pictures, Matt’s pictures, and other family member’s pictures.  I created collages to fit as many pictures as I could.  We had already decided on the songs we were going to use: Borrowed Angels by Kristin Chenoweth, One More Day by Diamond Rio, Keep Me In Your Heart by Warren Zevon, and Live Till I Die by Frank Sinatra (this upbeat tune was probably a surprising choice, but my goodness did it fit him to a T).  I stayed up until 2 or 3 in the morning working on the slideshow, but it was almost therapeutic. 








On Friday, August 30 was the visitation from 4-7.  Prior to that, Matt and I took the slideshow up to the church to verify that it worked.  We got to the funeral home early and had some time with Connor and family.  We weren’t sure if we would have an open casket, but he looked good, so we knew we wanted people to see him.  We were incredibly humbled by the turnout.  We saw family and friends, some of which we hadn’t seen in years (some even since high school!).  We appreciated everyone who came out to pay their respects.  Afterwards, the immediate family went over to my parent’s house for dinner.  Again, it was so helpful to be around others.



Saturday, August 31 was Connor’s Celebration of Life.  Prior to the service, we made sure everything was staged the way we wanted (his empty wheelchair a reminder of our lost boy).  We were also able to see him again in his casket.  One thing I will never forget about that day is the feeling of waiting to walk into the church, hand in hand with Matt, at the front of the line of family.  I’ve been to many funerals in my life and have walked in this very line many times.  However, I’ve never been in the front like we were.  Just knowing that people would have their eyes on us and feel sorrow was a feeling I can’t quite describe.  Again, we were incredibly humbled by the turnout (we both had college friends who made the trip to Charleston which was so kind).  Matt and I both spoke which took a great deal of strength.  Initially, I always thought there was NO WAY I could speak at Connor’s service.  I mean, I couldn’t even talk about the potential of losing him without crying.  But, we channeled our inner Connor strength and both managed to speak (Matt did much more than I).  After the hearse drove away, Matt and I made our way through the crowd to thank everyone who had shown up.  There were so many surprise visitors, including high school, college, and work friends, therapists and teachers, and even people from his pediatrician’s office.  We were truly blown away.  Once the crowd had dispersed, we again went over to my parent’s house to spend time with loved ones.









The following week consisted of waiting.  Waiting for the analysis of Connor’s brain to take place (it was maddening to us that Connor wasn’t “whole” during his visitation and service...instead, a crucial part of him was missing).  We also had to contend with Hurricane Dorian who threw a wrench into things.  Luckily it didn’t affect our service or visitation, but it did delay the analysis and ultimately the cremation.  It was almost good to have a storm to help take our minds off of our new reality.  The further analysis of Connor’s brain did not yield any answers (not a huge surprise to us), but we still had to wait for toxicology results to come back for his final autopsy results.  Connor was cremated on Saturday, September 7.  His urn had not yet arrived, neither had the jewelry that we ordered so we were given Connor in a temporary container to bring home.  Once everything came in, we took him back up to be placed in his final home.  We also were able to put some of his ashes in bracelets for us.


Eventually we did get the final autopsy results. It was inconclusive. We know there was an internal bleed, but the source couldn't be found. There were other things the autopsy found that were troubling, but none of which would have caused his death. Basically, Connor was a medical mystery up until he passed away.


This past year has been...I don’t even have words.  I am proud of the strength Matt and I have had.  We have our moments, and the big holidays were the most difficult (Connor’s birthday, Mother’s/Father’s Day, and the upcoming 1 year “anniversary”).  We do try to take comfort in knowing that Connor will no longer suffer, but it doesn’t mean we miss him any less.  Before I close this out, I just want to say thank you.  Thank you to Connor for being the best kid ever.  We know your life wasn’t easy, and we really tried our best to be great parents to you.  We were beyond blessed to call you our son.  Thank you to our family and friends who were there for us during Connor’s whole life, and especially after he passed away.  To those who brought us food, who passed along the word that he had passed away, who came to show us your love and support.  We cannot thank you enough.  


Connor, we love and miss you so much.











Thursday, February 27, 2020

Half a Year

*This first part might appear wonky...not sure what's going on with the formatting?*

6 months.  Half a year.  It’s crazy to sit here and type that Matt and I have been
without Connor for 6 months.  I think we’ve handled this time in our lives about as
well as we can. That being said, there are times where I question my own grieving
process.  Times where I wonder why I’m not crippled with grief to the point where
I can’t get out of bed. I remember initially after it happened wondering if I would
ever be back to being myself.  I pictured myself in meetings at work or just passing
people in the hallways and wondered what future Bonnie would look like. Would
she just be going through the motions? Would she smile and greet people?  Would
she joke around with others again? I certainly couldn't picture the latter two.
While I certainly have my moments of going through the motions, I have gone
back for the most part to the Bonnie I was. That of course comes with even more
questioning...how could someone who lost their child, this absolute ray of joy
and happiness in their life, just continue on?  It’s something I often wondered when
we had serious issues with Connor. How could the world keep moving on when
ours seemed to be in limbo?  


As I reflect on these last 6 months, I’ve learned a few things.

*Matt is my rock.  Doing this alone would be insufferable.  I will forever be grateful that we were there together when he passed away.  I will never forget waking up on August 28 before 6, bursting into tears, and having Matt there to hug me.  We joke often that we were an old married couple before we were an old married couple. I’m thankful to have this man in my life.  I am so sad that he has lost his “bro” and I know I can’t hold a candle to Connor. I am thankful that Connor had such an amazing, hands on dad.



*When a child dies, an autopsy will be required.  We felt we lost all parental rights of Connor after he passed as an autopsy was required.  This is a whole ‘nother post, and I won’t get too much into details, but this was very frustrating and emotionally traumatizing.  Again, perhaps another post for another day.



*Funerals for kids are cheap (relatively speaking).  The money makers for funeral homes are when older people pass.  You basically get everything at cost and the funeral home doesn’t profit off it.  This is random I know, but this is my blog and this is something that I learned.



*Matt and I are strong, in part because of Connor.  He was such a tough kid and showed us to keep smiling, even when things get tough.



*We will go through things in our own time.  Connor’s room remains mainly unchanged. Our laundry basket is full of his clean laundry.  We will start to slowly go through medical supplies to donate. I don’t know when I’ll be ready to go through these things and I know eventually we will when we’re ready.  We still have his cups with his med syringes out on the counter, as well as the formula recipe we had for him.  


*Our bodies have adjusted.  If Bonnie from a year ago heard me lament “I’m so tired,”she would look at me and make a sarcastic comment while rolling her eyes.  She’d be thinking to herself “Please….you don’t know tired.” However, I am tired and it’s amazing how quickly my body has forgotten and adapted to this new life of no middle of the night wake ups.

The caption for this picture referenced Connor being up for the day at 2:30. Yeah, past Bonnie would want to slap me...

*We have an amazing support system.  Anyone who came to the visitation, service, brought us meals, donated money, or thought of us in any way, we appreciate you so very much.



Of course, I’m sure as soon as I hit post on this, I’ll think of 8 other things I should have mentioned, but this is already longer than I thought it would be.  I hope you are able to channel your inner Connor at times to laugh and smile, even when times get tough.

Tuesday, September 3, 2019

Celebrating Connor's Life

I'm not really even sure how to start this.

This past week has been a whirlwind.  It has been a week since our sweet boy left us. 

While we knew the odds were stacked against him, and that this day would likely come, it didn't make it any easier. 

It's not easy that our identities as parents of Connor were stripped away and we were suddenly left childless.

It's not easy being home, thinking of all the tasks we normally do that are centered around Connor.  We've caught ourselves many times wandering aimlessly around the house, unsure of what to do with ourselves.  Even something as simple as me washing my hair or painting my nails were always centered around him.

It has been hard walking into our parents' houses without the excitement of Connor smiling and laughing in his wheelchair.  He loved getting carried up the steps into their houses.

That being said, we will get through this together and are extremely thankful for the friends and family who have supported us thus far.  We would not have eaten (that's for sure) and we wouldn't have had the nice distraction we have when we're around others, where we both talk about Connor and don't talk about Connor.

On Saturday, we celebrated Connor's life.  Matt and I eulogized our precious angel.  When asked a few months ago if I would be able to speak, I was adamant.  Absolutely not.  There was no way I could picture talking about Connor in front of others.  Anytime I mentioned it to Matt I broke down crying.  However, Matt and I channeled our inner Connor's strength and tried to do right by him.  I would hope he would be proud of us.

This is the video I created.  If you know me, you know I'm a picture fanatic, so I really had to limit myself to the 4 songs I chose.  I worked for probably 5-6 hours, and it was honestly a nice task to help keep my mind off of reality.

Fun fact: The picture in this thumbnail was from a fever. 

Connor, we were not deserving of you.  You were, and are, a precious angel and we are blessed to be called your parents.  We will take what you have taught us and try to make an impact in this world.  At the end, you required 2 blood transfusions (not counting the blood you received when doctors were desperately trying to save your life).  Your dad and I already have a blood donation date scheduled for the 27th of September.  Since we can't donate every month, we plan to do something positive and impactful on the 27th of each month in your honor.

Thank you Connor.  Thank you for teaching us what it means to stay positive, even in the darkest of times.  Thank you for reminding us to just relish in the music.  Thank you for blessing us with sheer joy you exhibited each and every day.  Thank you for being the blessing you are.  

While you are gone, you will certainly never be forgotten.  You will remain with us (and many others) in our hearts each and every day.  

We love you baby boy.

Sunday, February 17, 2019

Happy 6th Birthday Connor!

It’s hard to believe it’s been a year since I’ve posted on here.  I’ve written (one) post since last year, but I never published it.  That seems to be common theme on this blog. Oh well. Life gets busy.  This is going to be a lengthy, reflective post. In fact, I may have even posted all of this before. Just a fair warning.

Each year, I reflect on this day as I imagine every parent does on their child’s birthday.  I can’t help but be met with very mixed emotions. While I imagine many, if not most, parents look back and think “wow, what a whirlwind that was” or “what a crazy time in our lives,” I sometimes struggle with my emotions on this day.

On the one hand, I have been blessed with this absolutely amazing kid.  On the other hand, February 17, 2013 and the weeks, and even months, that followed were a rollercoaster to say the least.  When I think back to these events, it truly reminds me of how far we’ve come.



The night my water broke, right before we left for the hospital. When I look at this, I can’t help but shake my head.  I wish I could go back and tell them to pack more clothes because you won’t be home for over 3 weeks.  I also wish I could congratulate myself on having literally zero expectations of how Connor’s birth would happen.  My laid back attitude was a saving grace at that time for sure.

Connor was born at 6:51 AM on Sunday, February 17, 2013. It took over 12 hours for us to post and update the Facebook world on his arrival. We were overwhelmed to say the least. This was our first picture as a family of 3.

I remember crying for the first time to my mom and sister while I was getting prepped for the c-section. I was worried about Connor. He'll be okay they assured me. Of course, none of us knew the hands he was dealt were not at all what we expected.

When he was first delivered, I cried again hearing him cry.

Then, the news and discoveries slowly started to surface.

Extremely low birth weight for a full term baby (4 lbs. 14 oz.)
Microcephaly
Abnormal/missing toes
Recessed chin
Clinodactyly

Those were all mentioned on day one of life. I remember being in the recovery room with my mom when Matt came in to tell me about his weight and toes. I don't remember when the others were mentioned.
The next day, Connor was transferred late morning to MUSC where all the specialists are.
It. Was. Hard.
Matt went to be with Connor and I was left alone pumping milk for a child I wasn't sure when I would see again.

But then, a miracle happened. I was being discharged. Less than 2 days from my c-section, really just a day and a half. I got discharged late afternoon and we went down to see Connor.

If you've ever been to MUSC, you might be familiar with the rotating doors to get into the main hospital. I was so sore and weak, I almost couldn't keep up with the pace of the doors y'all. Luckily I was provided a wheelchair which was my mode of transportation for the next few days when I went down there.

Our next big news came that night when we were told Connor had a fever. That it was very concerning for a child only 2 days old to have a fever. They would have to run tests to see what was going on. I remember them telling us this while I was pumping and realizing that my modesty was out the window. Literally all I cared about was Connor.

Due to his fever, Connor had to be somewhat quarantined (his first of many times).

The next day held an MRI for Connor (very late into the evening).

Our next big scare came on Wednesday when we came back from a walk to chaos where Connor's bed was. He had had a seizure we were told. Tonic clonic. Long. 5 minutes maybe? Transferring him to the NICU immediately.

I will never forget the haze we were both in as we walked with him there. Them sending us away while they got him settled and us walking back to where our parents were in the main hospital. The look of surprise on their faces as we got off the elevators (instead of coming from the back where Connor was) and then the look of despair in their faces when they saw us and heard the news. This was the first time I realized that we set the tone in how to deal with all things Connor.

 Connor was hooked up to his first of 2 EEG's he would have while in the NICU.

There were many scary moments in the NICU. The time where Matt asked about Connor's breathing issues, and the doctor told us we may have to make a decision about life. The time where we came in in the morning and were told he had turned almost blue.

But there were also good moments. Shortly after that doctor spoke to us during rounds, the neurologist talked us back from the ledge we were on. He told us he had seen cases much worse where parents didn't have to make that decision. I will never forget Dr. Kinsman shining a ray of hope on that dark day. Also, Connor was moved around frequently, which we were told was a good thing.


It would take 23 days after he was born for us all to go home. Up until that point we had been staying at our parents houses. When I say stay, I mean sleeping. We would get up, eat breakfast, and then spend the entire day at the hospital.

However, our story doesn't end there. Connor has been poked and prodded more in his 6 years than most people will be in their lifetime. He has had numerous EEG's (12 to date), has been hospitalized numerous times, etc.

But you know what? All of these mixed emotions I feel as I think to this one day really can't compare to the explosion of love I feel towards this kid. I mean, considering everything he's been through, he is one tough cookie.


I love his happy personality. I love the way he analyzes the next song to come on Toddler Radio to see if it meets his approval. I absolutely love the way he lights up and gets excited at his favorite songs and people. I love hearing him "talk" in his own way. I love this kid so very much.

I remember Matt saying when we were younger how it was kind of funny that we celebrate birthdays because it's like you're celebrating living through another year. I don't know why this conversation stuck with me. Maybe I knew I would need to hang on to this. With Connor, we literally are celebrating another year of life with him. So here's to another year with this amazing kid who reminds me each day what love means.


Saturday, February 17, 2018

Happy 5th Birthday Connor!

Connor turned 5 today and it's a day to celebrate for sure!  Here are 5 amazing things about our sweet boy.

Pure Joy
As you've likely seen through our posts, Connor has this pure joy about him.  He is such a happy kid (and trust me, we couldn't always say that).  He is almost always happy.  And when he's not?  That's okay.  None of us are happy all the time, so I wouldn't expect him to be happy ALL THE TIME either.  
 

I love driving him home in the afternoons and when I think he's asleep hearing him just start cracking up laughing.  We always ask him what jokes he has.  

I love his joy.  It's contagious.

What He's Taught Us
Connor has given me many, many lessons these past five years:

1. It's nice to have expectations, but don't get too crushed if things don't pan out the way you want them to (I'm looking at you Halloween 2014).

2.  Plans are nice, but again, don't get too crushed if they don't work out.

3.  Keep me happy.  That means if I'm happy, you don't really need to mess with me...

4.  Live each day to your fullest.

5.  Play all the music (especially Pandora's Toddler Radio).

6.  Don't forget to smile and laugh.

7.  Even when I'm sad, sick, upset, not quite myself, etc.: I'll always come back to being your happy and sweet boy.

I know I could go on and on, but I'll stop there.

Strength He Exudes
I have to say, and I've said it many times before, Connor is my hero.  He is so stinkin' tough.  Way tougher than I am.  

I remember taking him for a routine eye appointment in November 2016 and his eye pressures being alarmingly high.  That was on a Thursday evening.  

They gave us a prescription and wanted us back in the office the next morning.  His eye pressures were checked and they wanted to see us again Monday morning.  

This video is from Monday night...the night before surgery.

On Tuesday, we had eye surgery.



Connor the next day getting his pressures checked again.

Why do I mention this surgery, when he's had other ones?  Did you watch that video?  How was Connor acting?  Connor's eye pressures were extremely high.  Abnormally high. Get this kid in for surgery as soon as we can high. 

As his doctor put it, if our eye pressures were that high, we would be absolutely miserable.  Connor?  Not at all.  

Another point to prove it (as if you didn't know already how tough he is).  The video below is the day of his feeding tube surgery.  Not only did he get his g-tube, he had the following done: 4 teeth pulled, Nissen fundoplication, bronchoscopy, and ear tubes.



I'm pretty sure I wouldn't be that peppy the night of a major surgery. 

I am in constant awe at how tough he is.

Progress Made
While there are clearly many things that Connor cannot do, and it's so easy to get bogged down in that thought process sometimes, he has really made some great strides.

He has grown (a lot).  Check out the photo change below!



His personality has come a long way.  I know most babies cry a lot, but it just seemed never ending sometimes with Connor.  It's so nice to have such a happy boy.


He has definite likes versus dislikes.  Particularly with music...there are some songs we have to give a 'thumbs down' to on Pandora and others that he loves. 

He recognizes voices and will smile and get super excited with certain ones (I'm looking at you NaNa).

He has a sense of his surroundings and knows what he wants.  He's okay being in his chair at school, but at home, he knows he has other options that he would prefer (like his mat or his crib), and he won't hesitate to fuss at us to take him out of his chair.

Connor moves all over his mat in his own little scooting method.

Personality
This is kind of a repeat of what I've already said, but he really has the best personality.  He knows exactly what he likes and what he doesn't (and he won't hesitate to let you know he doesn't like something). 

He's okay with trying new things, but he's perfectly content to just do what he normally does.  He tried out some kinetic sand and chocolate mousse for his birthday.  Check out the videos!



He loves being around people, noise, and chaos (I think he finds weekends with us to be quite boring).

We are so very blessed to have Connor in our lives and I am thankful for not only every year we have with him, but for each and every day.  Happy Birthday sweet boy.  We love you so very much.