Peeling back the layers of the biggest onion “depressing” my soul – Part 1

Warning:  This next series of posts (4-6) are going to be long, emotional and potentially be laced with swear words, as I’m looking at a really tough time in my life.  It’s hard, but I feel I need to do it…Here is Part 1 of 4/5/6…

 “You don’t know how strong you are until strong is your only choice”  Unknown

Throughout the past 10 years, a lot of people have asked me “How can you be so strong?” or have said, “You’re so strong”.  My stock answer is the quote above.  I don’t know where I heard it but it makes a lot of sense and seems to stop the questions.  The truth is, I don’t fucking know.  I have been surprised by how strong I am and what I have, and we as a family have gone through.  Sometimes, the strength is a front for how completely lost I feel inside, to cover the fact that I’m falling apart and have NO IDEA what I’m doing; other times it is true strength.  Where it comes from…some would say it comes from God, others may say I was born with it or it comes from nature.  Wherever it comes from I’m glad for it because I surely wouldn’t be here if I didn’t have it.  (FYI: I DON’T want to hear, “God only gives to those that can handle it” because I would choose to not fucking be dealt this hand, thank you very much!  It is one of the WORST things you can say to someone going through this, especially if not a religious person)

Some of you know, but many won’t know, what life has been like for me, and the Keiller family, these past 10 years.  Our daughter Charlotte Jean was born on July 9, 2002 at 2 in the morning.  She is a true light in our lives, so full of energy and a spirit that is undeniable.  She is an old soul whose hugs have the power to make you feel better, and a presence that makes people around her happy.  But her life hasn’t been easy.  Buckle in, cause this is going to be a long one!

I had a relatively normal pregnancy and her birth was fairly routine, but the cord was wrapped around her neck 3 times.  She cried right away but was smaller than expected 5lbs 15 oz. and had some lesions on her scalp.  They took her away and checked her out.  The doctors told us that the lesions were Aplasia Cutis Congenita and that they usually come with a severe form of Down Syndrome or heart conditions but she checked out fine for both.  They did an MRI of her head the day after she was born and everything seemed to appear normal.  Basically she had extra soft spots on her head, one near the crown and one at the back of her head, all along the midline.  But these soft spots didn’t have scalp over them.  They scabbed over, the skull grew in, and she has bald spots where the lesions used to be. 

But the next 4 months were not normal.  She had a really hard time gaining weight, we’d go to the doctor and she had lost weight, then back in 2 weeks and she had gained, we went on vacation, the doctor went on vacation…it was a roller coaster ride.  My instincts were telling me something was wrong but I couldn’t figure it out, and was too scared to listen to the little whispers.  We tried all different ways to get her to eat more, bottles, little tubes attached to my breast to get more milk while breast feeding, formula, mixes…nothing worked.  All she wanted was my breast but didn’t feed long enough to get what she needed.   Other than weight, she was hitting all her milestones: holding up her head, pulling up to standing, smiling, laughing.  I thought we had hit the jackpot because she slept through the night, but it turns out it wasn’t something to be celebrated.

Finally our family doctor sent us to the original pediatrician that saw her at birth. She said that Charlotte was “Failure to Thrive” and needed to be admitted to hospital for tube feeding immediately.  I was floored.  I felt like I was a failure and my life started to spin out of control.  I managed to get the Doctor to agree to admit Charlotte in the morning as I was not in a calm state of mind and needed to arrange childcare for Lindsay who was 3 at the time.  She was admitted to a local area hospital the next day (Nov 6, 2002) and the journey began.  She responded well to being fed continuously through the tube (an NG or Nasal gastric tube.  A thin plastic tubing that is placed through the nose down the throat and into the stomach.  It is then taped to the babies face), as well as still breast-feeding.  After 24 hours they wanted us to try adding a bottle, but she did not do well with that.  She fought it and worked herself into such a tizzy that she vomited.  Our original pediatrician had to go away to a conference so her colleague looked in on us that Friday.  He thought Charlotte was breathing funny (I did too – another whisper I didn’t further investigate - but everyone I asked said it was normal for babies.  Yeah, NO!), so he ordered a chest x-ray and a skull ultrasound to recheck her brain.  We also met with a Geneticist to start the process of genetic testing.  The day was full of tests and the interview with the Geneticist, so it went by quickly. When Gord brought my Mum and Lindsay to the hospital for a visit, Charlotte was sleeping so the nurse said it was a good time to go have dinner.  When we came back from the cafeteria, our whole life changed.  People in white coats surrounded Charlotte’s crib with concerned looks on their faces and she was hooked up to an ECG machine.  That’s when my Mum took Lindsay into the playroom and the pediatrician took Gord and I to the x-ray viewer.  The next few sentences literally knocked my knees right out from under me.  “Charlotte has an enlarged heart and an unexplained mass in her left chest.  We are transferring her to the Stollery Children’s Hospital via ambulance and I have arranged for a cardiologist to meet you in the ER.  Do you have any questions?”  HELL YES!  Thankfully, Gord was holding on to me because I would have fallen to the ground if he hadn’t been.

Gord took my mother and Lindsay home, and I rode in the ambulance with Charlotte.  It was only a 20-minute ride but it seemed to take forever.  My mind was whirling with so many thoughts, I was scared and felt sick.  Gord joined us at the hospital and that was the beginning of our new adventure, but not the kind you voluntarily sign up for.  After being admitted to the hospital, Charlotte went through a battery of tests over the 3 weeks we were admitted.  Echocardiograms, VQ Scans, CT Scans, Sweat tests, Multiple X-rays, blood tests, urinalysis… the list goes on and on.  Plus, she needed to be on oxygen as her blood saturation level (SATS) weren’t in the normal range, so she had a tube blowing air and oxygen in her direction 24/7.  She also got a type of flu, which caused her to stop breast-feeding.  Her nose was so stuffy that she couldn’t breath while feeding, so she was tube fed 24/7 with a mixture of my breast milk, which I was pumping, and high calorie formula.  After she recovered from the flu, she had lost all interest in breast-feeding.  I tried and tried, but she wouldn’t have any of it.  She seemed to realize that the act of feeding was tiring her out so why do it.  All the tests and procedures told us more of Charlotte’s story.  Her heart was enlarged because she had a hole between her Atria – or an ASD.  The unexplained mass was caused by a left diaphragmatic eventration (the tendon that is between the muscles that make up the diaphragm were paper thin- not a hernia or hole, but very close).  Her diaphragm was very weak, and when she breathed, it would suck her organs up into her chest cavity.  While her left lung was fully formed, it wasn’t getting the proper blood and oxygen supply.  The cardiologist assured us that ASD’s do not cause Failure to Thrive (FTT), and that it must be her breathing using up all her energy, resulting in FTT.  Again, I chose to ignore the whisper that this may not be the case, but what did I know.  I wasn’t a world renowned Cardiologist?

During this time I lived at the hospital 24/7, with one night away, when the nurses insisted I go home to get a good nights sleep.  Lindsay was missing me at home and Gord had to continue working.  He had just made partner and was very busy.  I only got to see them when they came to visit in the evening or talk to them on the phone. I felt isolated and completely out of my comfort zone.  Thankfully my Mother-in-law had retired just after Charlotte was born so she was able to look after Lindsay while Gord was at work.  She was an angel on earth, taking care of my very active 3-year-old while on crutches because she needed both her hips replaced.  She never complained; did my dishes and made meals for Gord and Lindsay.  It was a blessing not to have to worry about what was going on at home, as I already had too much to worry about.  I did worry that I was neglecting Lindsay, but didn’t have time to really concentrate on it as Charlotte’s health was first and foremost during that time.

Most of my friends didn’t know how to react or what to say, so they behaved differently around me.  Other than my friends I had had since high school, only one friend truly stuck it out with me.  The others started to fade into the background, some quicker than others, but I don’t talk to any of them anymore.  I found that when people were complaining about their “normal” lives, and their “normal” children, it frustrated me to no end.  I started learning a new language, that of the hospital and medical jargon.  I started making a new set of friends: nurses, doctors and other parents with critically ill children.  They were like life preservers in the sea of uncertainty, medical jargon and guilt.  I wouldn’t have made it without them.

I also wouldn’t have made it through without Gord and his calm manner and strength.  His ability to hold it together when I was falling apart, showing me that he was a real man, crying in each others arms because we had no idea what was going on.  Being an amazing father to Lindsay and keeping the house running smooth with the help of his mother.

After Charlotte was diagnosed with everything and had recovered from the flu, a plan was put in place to go home, with oxygen and the feeding tube, and allow Charlotte to gain weight and get healthier before operating on her heart or fixing her diaphragm.  I was trained by the amazing home care staff to put in the feeding tube and how to work the equipment.  I went on a type of medication, that while not harming me, had the excellent side effect of increased milk production and purchased my own breast pump so I could keep up with demand.  I was determined to provide her with milk, as it was the only thing I felt I had control over.  We were set up with home oxygen and got all the supplies we needed.  It was an amazing feeling walking out those doors after 3 weeks.  I didn’t want to go back for a long time, or at least just for short little stays…Yeah, I didn’t get what I wished for.

We came home and Lindsay was ecstatic to have her sister and her mother home.  She was by my side constantly and thankfully was all cuddles for Charlotte and didn’t dismiss her.  I settled into a new routine of pumping milk and mixing it with the high calorie formula in the right ratios; working the feeding equipment, dealing with oxygen tanks and all other stuff that you have to do with a 5-month-old baby.  But all wasn’t perfect or as it should have been.  Charlotte was still not gaining weight and her breathing was worsening.  Our new pediatrician that we were assigned to was amazing and we went to go see her.  She couldn’t understand why Charlotte wasn’t gaining weight or what was going on with her breathing.  She was also sure the heart was playing a role, but because Cardiology was so adamant, we went to see the general surgeon that consulting while we were admitted and it was agreed that we would repair Charlotte’s diaphragm.  He wasn’t convinced that it was going to solve all her problems, but thought it could help.  He said best case, she’d improve greatly, most probably she would have a slight improvement in her breathing but not sure about her weight gain, and worst case, nothing would change.  Charlotte had something entirely different in mind…

Stay tuned for “Peeling back the layers of the biggest onion “depressing” my soul - Part 2”