“We prayed every day that if Ellie was in pain like they said, and if she would have no quality of life, that God would just take her on His own. The doctors asked us if we wanted to continue care for Ellie.” Inspiring Women: Life With Jami.

I met Jamie at Camp ABK about fifteen years ago. I can tell you the young girl she was back then has been on an amazing journey. It has transformed her into an incredible woman who loves God and her family.

Inspiring Women: Life With Jami

A Little About Me

My husband and I got married young, and he still had many, many years of school left.  He was trying to become an Optometrist, and I was trying to patiently wait for babies!  I always dreamed of getting married and having babies.  I was the young girl in church that wanted to help in the nursery every Sunday, and hold as many babies as I could!  We knew it made the most sense to wait until Mike had graduated from Optometry school, so we tried to wait. But then found out we were pregnant a week before he had to leave for an externship in Atlanta, Georgia.

We were so excited, we told everyone within the week, and off he went. Around 9 weeks I had my first ultrasound. I remember sitting in the car after, crying, wishing Mike could have been there with me.

I called him while he was at his placement to tell him the exciting, scary, crazy news. There were two little beans inside me!!!  TWINS!

Mike was finally home, and we were visiting family in Sudbury.  It felt like any other normal day of pregnancy, I remember sitting on the couch, feeling the girls moving around inside me.  Twin B especially, she was a kicker!  Which of course always made me have to pee… but as I sat there, something felt different and weird – and I quickly realized that they were starting to fall out of me.

The ambulance came quickly; I even got up off the bathroom floor myself and walked to the front door onto a stretcher.  The whole time, I never thought that my girls were going to be born, I figured they’d just push them back in, and I’d be good to go.

But as soon as they wheeled me into the room, I knew something terrifying was about to happen.

I remember just laying there by myself, although not by myself, there were nurses and doctors everywhere! There was a moment of quiet though, where it felt like it was just Jesus and me, and I remember praying softly, and crying, that if He had to take my babies, I would understand and still love Him. My girls were born at 23 weeks 6 days.  Ellie Joanne Burns first, weighing 690 grams (about a pound and a half), and after looking at her for three whole seconds, she was whisked away.

Then Andie Marie Burns a minute later, weighing 670 grams, letting out the tiniest but mightiest scream for the whole room to hear… and we sobbed!  These girls were going to be fighters!!!

The girls were flown to Ottawa General Hospital, and we made the long drive to follow them there.  It was the longest drive of my life.  I remember getting to the hospital and seeing my babies in their little isolettes.  It was so strange, these little creatures who should still be in me for 4 more months were just laying there, with millions of cords and machines hooked up to them.  I knew they were mine, but they didn’t feel like mine.

A Typical Day

A typical day for us was to wake up around 6:30 so I could pump.  I would shower, and Mike would go and sterilize all of my pumping equipment, we’d have a quick breakfast, and then we’d start our walk over to the hospital.  We’d make the walk through the hospital to the NICU, say our good mornings to nurses with whom we were quickly becoming familiar. Mike and me would do the routine of washing our hands, and then sanitize, and wash our hands and sanitize, over and over. 

We would just sit beside our babies; talk to them, and pray for them.  We always made it in time for the doctors to do their rounds, and we would listen to their plan of action. Eventually, we got to know more about what was going on, we were learning, and we would even chime in and make our own comments during rounds.  My typical day was sitting and watching, and pumping, walking back and forth from the Ronald McDonald house, and sit and watch and pump. 

Eventually, we were able to start doing more, after 3 weeks we were finally able to hold them!  A day I will never forget.

I felt like I should be losing it more, be more of a mess.  People were probably judging me because I wasn’t falling apart.  Shouldn’t I be falling apart?  In the midst of all the craziness, I remember just feeling like we were on this cloud of peace, and God was helping us float through the whole journey He had us on. 

I had my routine, and we were just taking it day-by-day, loving on our babies for every extra day God was letting us have with them.

My Daily Struggles

Ellie and Andie were both in critical condition.  There was always something happening.  Things like their sugar levels were low, or their sodium or potassium levels were low; their hemoglobin was low and would need another blood transfusion. They had lost blood flow to their toes, and their feet were turning black. 

We had gotten a call in the middle of the night that Ellie’s right baby toe had fallen off, and there was so much going on that I remember feeling like, okay, her toe is the least of our worries, almost like I thought it would just grow back after. 

Now when I think about it, it hits me – their body parts were falling off!!!!

We then got a call in the morning that Andie’s right baby toe had fallen off as well.  It’s like they were in a competition with each other, or they didn’t want to feel left out or something. 

Andie ended up losing all the tips of her toes, and Ellie lost all the tips of her toes on one foot.

Both girls were having trouble with their hearts, and eventually, Andie needed surgery because it was causing her to start showing signs of chronic lung disease. One of the biggest issues was for Ellie.  She had a grade 4 brain bleed.

At the beginning they made it seem like they were still hopeful and were still on our side for caring for Ellie, but as the days went on, it got worse and worse, and we were called in for a meeting.  We knew it wasn’t about anything good. The doctors were less hopeful about Ellie.

They read off a bunch of statistics and said that Ellie would have no quality of life and they wanted to know our decision on whether to continue care for her.

She would most likely be blind and deaf, she most likely wouldn’t be able to swallow or hold her head up, she wouldn’t be able to sit up or walk, she was in pain.

We were heartbroken.  I could feel them looking at me like I was this naive girl that had no idea what a life with Ellie could mean for us. 

But I did know!  I had worked for the Waterloo Region District School Board for three years with children who were developmentally challenged. Plus,  I worked with kids who had Cerebral Palsy, who were in wheelchairs, who had leg braces, who needed to be changed and fed.  I knew what this could mean for our family. 

It’s like the whole room just stood still for a moment.  Just like in the movies! I was praying to God and saying, “Really Lord!  Did you have me work in that classroom to prepare myself for the daughter I was going to one day have?  Is that going to be my life?!”

And again the peace would just come in, and I’d be there floating.  I’d come back to reality and realize these doctors were looking at us waiting for an answer.

I knew that whatever Ellie’s life was going to be, was the life God had planned for her.  The life God had planned for us to have – in raising this little girl.

– Jami

There was still room for prayer!  We prayed every day that if she was in pain like they said, and if she would have no quality of life, that God would just take her on His own. Mike and I prayed that they would be wrong and that Ellie would be strong, that she would be a “normal” little girl.

We prayed that if she was severely disabled, that she would at least know that we loved her and that God loved her. 

They asked us three more times that next week if we were sure…

My Joys

We kept pressing on – we had good days and bad days.  Mike eventually had to go back, to finish his schooling, and I was left alone in Ottawa.  I didn’t mind being alone; I wanted to spend as much time as I could with my babies. Thankfully,  I found joy in the little things.  I would bring home their blankets and do their laundry.  Something that made me actually feel like a mom. I would pump every 2 hours to make sure they had enough breast milk.

The girls eventually got strong enough for me to hold both of them together at the same time!!  They were finally reunited!  One of our favourite nurses had to wipe my tears for me.

Watching them make progress brought me so much joy! I was a pro from watching nurses and having them teach me, and was able to do a lot of their care myself.  Taking their temperature, changing their little diapers, and giving them baths.  I would hold them for hours and just rock and sing to them. 

Ellie would do something the doctors would say she wouldn’t be able to.  Her little 2-pound self – took to breastfeeding like a champ and she could swallow. She could swallow!!!!! They got old enough to be sent back to Sault Ste. Marie to continue care there and I was finally able to go home and be with family.

And the biggest joy of all, after over 100 days of being in the hospital, they were released – Ellie on Christmas Eve, and Andie a couple days after that.

We felt like we were stealing our children and somebody was going to come running down the hall and say they made a mistake and we’d have to go back.   We walked pretty quickly!  Mike and me sat in the van just praising God… we were so thankful and felt so blessed.

My Dreams

Writing that all out was quite the journey in itself!  That time in our lives already seems like such a blur.  Our girls are now 4 years old and doing well.  They started school this year at home, and we’ve been really enjoying homeschooling. We had another little baby, a boy, in June 2017. We named him Rhett, and we are now a family of five.

Andie is a spunky and fierce little girl.  I sometimes don’t give her enough credit … she has the same birth story as Ellie, and I forget that sometimes because it’s like it never happened for her, aside from her scars and missing toes.  She’s so full of life and energy, and my goodness she has sass!

Ellie has a sass all of her own, but also such a sweet and gentle spirit.  She was diagnosed with Cerebral Palsy when she was one.  It’s taken her longer to do things, like sit up on her own, or to move around.  But cognitively she’s kept right up with her sister.  She’s such a smart little girl!  This week she’s been telling people that her favourite cloud is a cumulus cloud. Haha!

I have kept in touch with some of her doctors, and I love to send updates.  I love them to see how far she has come when the statistics were so against her.

My dreams for all my children are that they would grow up knowing the Lord and wanting to show His glory is everything they do.  I dream that they will be kind and caring individuals.  My dreams and prayers specifically for Ellie are that she will one day be able to walk on her own and that she won’t have any more seizures.

My dream and prayer for my busy boy Rhett are that he would stay safe and not have any more bruises on his face! Haha.

I’m so thankful for my wonderful husband. Going through all of this together has made our relationship closer and stronger.  He’s an amazing husband and father, and I’m so blessed to have had such an incredible partner to do this life with.

Moments with God

At our church, we have a Kid’s Day planned for the children on the P.D. days during the school year.  I have been one of the teachers teaching the lessons, even though I find myself complaining that I don’t have enough time for it.  But our lessons have been about the Lord’s prayer. Matthew 6:10 says:

 As Christians, we should be yearning for the return of Jesus, longing for Him to return.

There’s so much going on in the world, there are the things that bring us so much joy, that it’s all we can think about, and then there’s also those who are experiencing some pretty intense trials in their life. 

We sometimes see God’s detours in our lives as unfortunate or as annoyances, but we should be seeing them as opportunities to desire God’s Kingdom come.  It’s something I’m working on too – ‘cause let me tell you, when we thought our babies were going to die, I wasn’t sitting there joyous, saying, oh goodie, an opportunity! Life can be so hard! 

But Christ is there with us every step of the way, through the good and the bad.  Ellie was a little nervous to start her very first gymnastics class.  I was thrilled they had a program for children with special needs to be able to join in the fun.  Ellie said on the way in:

“Mommy, I’m going to be brave because I know you’re here holding my hand, and Jesus is holding my other”

Jami’s feature is filled with so much hope. If you know of a family who’s been asked to make tough decisions about their sick child, please share Jami’s story with them. Would you like to read about a mom of three who shares the joys and struggles of motherhood? Read Life with Rachel.