Brianna Christopher

This is where we...I say we I mean Athena and I....if you know you know..found out through lots of blood work, for her and I...someone declined...once again, if you know you know... and several visits that her congenital heart defect was part of a bigger picture. Turns out she was born with 7th Nerve Cranial Palsy, this caused the left side of her face to droop.

So once Athena was old enough, she was 4, in May 2017 she went in for 1 of 2 major facial surgeries to aid in bringing her control of the left side of her face. 

Leading up to this we were lucky enough to have met and had the plan put together by the surgeon who created this pack of surgeries. (What was even more amazing was Athena's new pediatrician...yes we switched after the heart issue miss...did his residency at SickKids with this surgeon). However, by the time Athena had the surgery he had retired but he had a fantastic surgeon take over.

This surgery was a few hours long. They took nerves from Athena's leg and implanted them into her face in several places (called a nerve graft). This surgery saw us there for a few days. Then home to recover for a few weeks.

Oh, did I mention I was in summer school getting my business degree while all this was happening?  Haha.

The nerves would need time to become one with the facial tissue so just less then a year later, Athena was approved for the 2nd and last surgery.

This one was long, invasive...traumatizing. We were lucky enough to have the same surgical team on our side. This time they took pieces of muscle from Athena's leg and implanted it and attched them to the nerves they had implanted the pervious year. 

I won't get into the details but there were drains and swelling I wasnt expecting...this saw us in SickKids for over a week and recovery was months and months with lots of followups as Athena had some struggles.

I will never forget it, on one of our last days there it was Megan's Walk and staff were handing out Tshits, there were super heros outside the building and hundreds of people holding hands completely surrounding the building in one giant hug. An impact I will never forget. The superheroes came into the hospital to visit the kids, Athena got to meet Superwoman, Batman, Superman and an Avenger.

Athena also got to meet Piper, the resident pup 🐾

Athena was still battling high fevers so when we got to her bed not only did she have tunes coming out of every part of her little body but they also had cold clothes on her forehead. She also had a clear acrylic box over her head, this was not previously mentioned), I asked what it was for then noticed she wasn't breathing very well and she kept arching her back. If I remember correctly they were forcing oxygen. My heart shattered for her. All we could do was talk to her and rub her hands, legs and feet. 

I believe it was the following day her fever broke and I could finally hold her and assure her she was safe and I was there for her.

Throughout our few days there we had friends and family stop by to see her, which just meant so much to me.

After a few days she was allowed to go home.

The following months we had weekly follow up appointments at SickKids. 

Athena had to be checked on throughout the nights, she had to move slow, coughing, sneezing and giggling were painful as well lifting her out of her crib...or from position.

But....she made a full recovery. We see Cardiology for regular routine check ups, last appointment they found she has a murmur that is being monitored but at this point it is not a concern or a danger.

We had to give her a sponge bath with soap and sponge fresh from sterile packaging. 

It felt like forever waiting for her turn, we played with her and hugged her and kissed her as much as we possibly could. Then the nurse came picked her up and way too quickly for me, said 'say good bye to your mom and dad' and she was gone in the blink of an eye. My heart both broken and grateful.

If I remember correctly the surgery was a few hours. Both my parents came, we had breakfast then sat in the waiting room trying to keep it together, watching her name on the surgical board go from in surgery to in recovery and patiently waiting for the doctor to come out with an update.

Everything went to plan, standard procedure for them, but she spiked a fever and had to be held in ICU to try to bring it down, we couldn't see her just yet.

Finally after a couple hours we were allowed to head in to see our brave girl.

I'm sorry what??

So with that for 30days we lived in the hospital waiting for a surgery date from SickKids.

I nursed, I pumped, we increased calories every chance we could. It got to the point where I was checking her tube placement and doing her tube feedings for her so the nurses could manage their other patients. 

And we cried...I cried, a lot. The nurses became my shoulder, my support and a huge part of our journey. They helped me get through some tough days, they will never fully understand how grateful I am for them and their kindness.

Family and friends came to visit to help keep us busy, food, gifts and the best support. Even anonymous gift drop offs all hours of the night.

Athena and I were barely in the front door, coats still on and Athena still buckled in her carrier when the pediatrician called and told me that Athena was to head to the emergency department ASAP to be admitted for 'observation'. I quickly packed a bag incase we needed to stay a night or 2.

Once she was admitted we went up to the paeds floor and put in a room. Nurses came in, put a feeding tube in her, checked vitals and all the things, and I'm standing by wondering what was going on, in tears. After a day or 2 of 'observation', me pumping, adding supplements to her feeding tube to increase calories and aide in weight gain (she was less than 10lbs at 7months old) and I'm still being left in the dark about what is going on. Just being told we need to increase her weight, then my family doctor who is also an OBGYN and delivered Athena was on her rotation and came in to see us as she was very surprised to see us there. She walked in and said the words that absolutely destroyed me...heart failure.

For the next several weeks I nursed non stop she cried non stop and neither of us slept much. Athena....that's my girl....Athena would sweat when she nursed, refused bottles, refused a sucky and would only sleep on me or in her swing if it was moving. Car rides didn't soothe her, walks all hours of the day and night didn't soothe her. I was in survival mode and she was struggling.

Her check ups always came back as 'she just loves her mommy so much'.

That was not an answer I was willing to accept. So I started talking to family and friends and after a few months it was recommended I go see a lactation nurse to see if my supply was suffering or causing issues.

I booked an appointment and when we got there the lactation nurse asked me to nurse Athena while they observed and let me tell you....the moment Athena started to sweat the nurse excused herself and made a call...to the pediatrician I had been adament with that there was something wrong.

And I was right...little did I know what was coming!

My baby was comfy cozy in there so 2 wks after my due date I was induced and after 17hrs of labor, an almost c-section due to the baby's pressure dropping, at 10:08pm August 14th, 2012 Athena Pearl made me a mama and forever changed my life.

We were in the hospital for 2 nights, the longest 2 nights...we did not have a private room and let's just say our neighbor had her hands full. Nurses said Athena looked to be nursing well, doc came by to introduce herself and to invite Athena to become her patient...perfect we had a pediatrician and she seemed lovely. 

By day 2 it was finally time to take my girl home. She was down 2lbs but doc and nurses weren't concerned and reassured me she would gain it back in no time. Homebound!