Our First Scare-3

 
 On June 14th Jeremy had his first follow-up appointment. This mass under his arm appeared to be growing and the doctor was questioning whether it was a blood clot. He decided it would be best to do an MRI to determine what exactly was under Jeremy's arm. The MRI was booked for June 22 at 1145. After speaking with the anesthetist, as a routine procedure, we figured this MRI would not be much of a big deal and that Jeremy would sleep comfortably through the whole thing and then we would go home after and await his results.
     Unfortunately, things are not always so easy with Jeremy. At 18 days old, he was already an adrenaline junkie. He did go in for his MRI as planned. But instead of taking 20 minutes like we were told, it took them 2 1/2 hours to complete the MRI. Brent and I anxiously paced the hospital grounds as we awaited results. We were told that Jeremy did not tolerate the procedure of being lightly sedated. He desatted to the low 80's (this is your oxygen saturation, meaning the oxygen circulating his body was not at 96-100% where it should be) and his blood pressure dropped significantly. Jeremy had to be intubated and was put on a ventilator. It was shocking to see our tiny baby with a huge tube coming out of his mouth and for him to be unresponsive.
     We were also told that the MRI showed that the mass was growing and the involvement with his heart was getting greater. Fifty percent of the blood was being shunted back through this mass via a major artery, instead of circulating through his body. This was causing Jeremy to get an enlarged heart as it worked ever the harder to try to keep up.
     After spending a long night in the ICU, we took Jeremy home with plans to bring him back to the hospital on the 30th of June to have the mass removed. It was decided that since the mass now had so much involvement with his heart, it would be better to do surgery.

At Home--written by Jeremy-2

 

 I finally got to go home and soon realized that I had quite the neat little family life set up for myself there. What a cool place! It was weird not having somebody poke and prod me every hour of everyday. Chloe sure was crazy and so fun to watch! I also discovered something else: not only did I live with my mommy, daddy, sister and kitty Toby, but I also had another family upstairs! My aunty Courtney, uncle Dave, cousin Owen and their puppy Lucy all shared a house with us. So, in these days home I enjoyed lots of time playing and hanging out with my family, and also visiting with friends and other relatives. These days were filled with loved ones and lots of fun, we all thoroughly enjoyed it.
    First things first, we had a celebration! June 09th was Owen's birthday. He turned two so we had a party and everyone had a blast!

     We went to the park and I watched everyone play at the playground

     I hung out a lot on mom and dad's bed

     and in my car seat

     I actually got really acquainted with my new friend Sleep

      Had lots of cuddles, here I'm with my mom's sister, aunty Tanya and my mom's friend, aunty Sarah

Had bath time with Chloe's supervision (didn't like it so much)

And was introduced to the world of cars. Apparently Owen is willing to share his stash with me (Chloe's off limits)

   

The Beginning-1

A friend told me that the elephant symbolizes strength, honor, stability and patience. It is believed that they bulldoze obstacles and carry heavy burdens on your behalf. This blog is Jeremy's elephant, and there is a story to be told.

The other day I heard myself telling another person that my son had cancer. It was then that I realized I had come out and said it publicly. My beautiful baby boy has an illness that terrifies me. For many months I cocooned  myself and my son in our little "safe" world. I only told a small group of  people about this thing that had taken over our lives and turned it upside down. I thought that I was protecting my son and our perfect little family. This worked at the time, but now I feel ready to tell the rest of the world and to give people the opportunity to meet our amazing little man.

Brand new baby, just minutes old!

Born June 04, 2011 at 1037 pm, Jeremy Matthew Rice waited for the very animated 2nd playoff game to be finished before he decided it was time to head to Peace Arch Hospital and say hello to the world. He was a perfect little bouncing baby boy, with all fingers and toes accounted for. He even had a little extra poundage, weighing in at 8 pounds 4 ounces. There was only one problem, there was a mass under his left armpit the size of a small plum. An X-ray was done and came back inconclusive. The pediatrician on call that night felt it best to be transferred to Children's Hospital so that they could do an ultrasound and possibly other testing. At 1230 on Sunday, both mom and son took their first ambulance ride.

 

               Our ride in the ambulance, Jeremy slept in his incubator and didn't even notice! He slept through the whole thing!

We were admitted to the NICU because of course Jeremy was a neonate and it was the only place they saw fit for him to go. All the nurses didn't know what to do with him! He wasn't premature,or failure to thrive and he was breastfeeding instead of being tube fed. He actually appeared to be quite uncomplicated and far too "healthy" for the NICU. For our sake and theirs, the nurses felt we would be more comfortable in our own room. This way we could do what ever when ever, but I could not leave the NICU with my baby. This was a bit frustrating and surreal. For the first time, as a nurse myself at BCCH, I was getting the view from the other side of the lens; getting a real feel of what many other families and patients that I've cared for, go through.

Little Jeremy hanging out on mommy's bed

We were referred to a plastics/vascular surgeon. He did an ultrasound of this lump and discovered that there actually was a fair amount of blood flow between the lump and Jeremy's heart. Not too concerning at the time, but interesting. He did an echo of the lump and also palpated it and thought that because it was formed but soft, it presented as a hemangioma. Still, no one thought anything of this. Chloe has two hemangiomas, one on her left knee which has pretty much disappeared and one on her right shoulder blade which should be completely gone by about age five. He started Jeremy on a medication called Propanolol that was to be given orally and would help to shrink the hemangioma. Because Jeremy was exclusively breastfed, I was the one to stay at the hospital. I missed Brent (my husband) and Chloe (my daughter) terribly, not to mention my hormones were all over the place having just given birth. Even though we were only at the hospital for five days, it felt like the longest days of my life. Our perfect little boy was sick and it was out of our hands. Luckily we had Chloe, our daughter and ray of sunshine, to keep us focused on what was important in our lives: love and family.  Her and daddy came to visit everyday. Chloe just adored her little brother!

   

Chloe holding her baby brother and saying "hello"

Finally we were discharged home. We were to come back weekly for follow-up appointments.

Tucking Jeremy in his carseat so that we can go home!!

On June 9th, we all loaded up in the minivan and headed home. We thought the worst was behind us and now we would all be able to enjoy our little newborn.