Heart
December 7, 2005
It’s not too often I get serious on this blog, but the theme this week over at Mama Says Om is “Heart.” This story is 7 years overdue…..thanks ladies for your continued inspiration.
Dylan was born a healthy 8 pound, 11 ounces. He had a bit of a fever and so the hospital took precautions and placed him in the NICU for his first three days of life. I was 24 years old, and had a good sense of who I was, and was so very happy to be a mother and wife. This was all I’d ever wanted. Growing up, my mother carefully wrote in my big blue school years memory book, and every year, while the desire to grow up and be a nurse, doctor, artist, dancer, or lawyer kept changing, the word mother was always written first.
Dylan was what people call an ‘easy baby.’ He rarely cried, nursed like a champ, slept a normal amount of time, and I loved cuddling him in my arms and dancing in the living room, making him smile, and going for walks in our Vancouver neighbourhood, a few blocks to the coffee shop for a latte or to Baby Gap to peek through the clearance rack. Despite Dylan’s happiness, I was still quite a nervous mother, and I got anxious when strangers touched him or breathed in his general direction. My heart would beat faster and although I smiled at well-meaning-germ-infested people, inside I was ready to ditch the stroller and run screaming with my baby in my arms.
Around the age of 3 months, Big D came home after work to a terrible mess. It was late, around midnight. The house was a shambles, the dishes unwashed, the living room cluttered with Kleenexes, burp cloths, blankets and me in the center of it, holding Dylan on my shoulder, rubbing his back while the small lump just kept weeping and every once in a while, crying out in what seemed to be pain. He was warm, feverish, but I had taken his temperature several times and it was only slightly elevated. All the alarms in my heart and head were going off and I knew, in the depth of my soul that something was horribly wrong.
Knowing how neurotic I can be about germs and sickness, Big D tried to assure me that our bundle of joy simply had a fever and he would be fine….that I was breastfeeding and that was what was best, so everything would be fine. I explained that Dylan had barely nursed all day, he had hardly slept and that he had been crying since 8 a.m. that morning when he was awake. I insisted that something was wrong, that I could *feel* it and please would he take us to the hospital. I felt sick to my stomach that I might be right. I wanted to be the crazy mother, fretting over something small; I wanted to go the hospital for them to send us home with a script and a solution. For once I wanted to be just a hypochondriac.
That did not happen.
After a mere few minutes in the waiting room and answering a few questions, we were whisked into a cubicle with a pink striped curtain and told to wait for a nurse. It didn’t take long for a nurse to come and assess Dylan. Temperature, blood pressure and heart rate were all up. Clearly the medical professionals were concerned. Within an hour of arriving, a doctor informed us that they suspected meningitis and wanted to perform a spinal tap. I stood up to go with them and the nurse motioned for me to sit down. “You don’t want to be there,” she warned me. I disagreed and tried to stand again. “Please, you don’t want to be there. We will take good care of him, I promise. You may want to try nursing him when he comes back.” I sat, robotically. Big D put his arms around me and I stared at the steel rungs of the hospital bed.
I don’t recall our conversation, but I didn’t cry. Not then. Sure, it upset me, but I was angry more than anything. We were so happy. Why was this happening? I sat there, numb and puzzled.
When they returned Dylan to my arms, he was screaming and red. I tried to get him to nurse but all he wanted to do was nuzzle against my skin. It was heartbreaking how limp he became, almost like defeat.
The test for meningitis came back negative. Dylan was admitted to the children’s hospital and they started an IV drip of antibiotics. Solution for everything - or so they thought that day in March 1999.
For five entire days, Dylan got progressively worse. He developed a red rash on the trunk of his body. His eyes were bloodshot and he began sleeping all the time. His fever stuck at a low-grade. His tongue was red with white dots, and they called it strawberry tongue. He vomited and had diarrhea constantly. They put him on a feeding tube because he wasn’t eating. My best friend became the hospital breast pump. I would trudge down to this tiny room where they had 2 hospital-grade breast pumps, and Reader’s Digest Magazines from 1987. I would try to read to take my mind off of my only son, but I ended up staring at the brown wall in front of me and zone out while the machine hummed breast milk from my strained body. I hadn’t cried yet. I hadn’t slept either, and I barely ate. I was consumed by every detail of what was happening with our baby and couldn’t focus on anything else.
We hadn t talked about it, but I was thinking about funeral plans for Dylan. I didn t know how I would cope, but I was thinking through how life could ever just be if Dylan died. I felt empty and numb. Still I did not cry.
On that fifth day, the resident doctor approached me as I sat, holding Dylan’s tiny hand. He motioned for me to come into the hall so he could speak without waking our frail infant.
He looked me in the eyes and quietly said, “We think we know what Dylan has.”
I blinked.
He explained, We think Dylan has what s called Kawasaki s Disease.
Still numb, I clinically asked, What do you do for that?
We give him a blood product, called Gamma Globulin, through his IV, for 24 hours. If he doesn t show improvement, then we do another course for 24 hours. It has proven to be successful in Kawasaki s cases. He s young, but we caught it early and hopefully there has been no damage to his heart. Most cases, especially in rural areas, are not caught until 40 days in and the kids end up with heart aneurysms.
How did he get this? I was still, soaking up every word, trying to memorize everything the doctor said so that I could explain to Big D, who had to work through the day.
There is no known cause. We don t know how kids get this. Dylan s case is atypical. Most kids who get Kawasaki s are of toddler age and of Asian decent. Dylan being a Caucasian 3 month old is very strange.
Well what if this isn t Kawasaki s? Will this Gamma Globulin hurt him; will there be side effects?
No. None.
At this point, I was angry again. Why hadn t they figured this out sooner? What if his heart was damaged? What if it was too late for this treatment?
Then what the fuck are you waiting for? Keep in mind; I had not slept in 5 days.
We ll start now, he said, and he put his hand on my shoulder. Not in a patronizing sort of way, more like I know you re not being a bitch on purpose.
At some point, the head nurse came in and looked at me. I mean really looked at me. It was almost like in slow motion, or kind of blurry like a dream. I was so tired I was starting to slur speech and my eyes were all messed up.
You need to go home, she said.
What?
You need some sleep. Can your husband stay? Look at you. You need sleep.
I need to stay here, I replied calmly, I can t go home. What if&
Go. She was insistent. Go home. Go straight to bed. Take a shower in the morning. Grab a coffee and eat something, THEN you can come back. You re no good to Dylan if you re running on empty.
My chin quiverred. The tears flowed from my eyes, and I fell into her arms. She hugged me tight and rubbed my back. It was like she knew I didn t have anyone to lean on except for Big D, who had to work. He had a brand new job with a huge company and great potential. He couldn t miss work.
I sobbed hard, leaning on her, letting everything out. It was ugly cry time and the tears would not stop. We must have stood there for a good 2-3 minutes, not talking, just her letting me cry it out. When our embrace broke, she handed me tissues, looked me in the eyes and told me that Dylan was in good hands and please to go home tonight. I don t know if it was fatigue or the knowledge that she would not be argued with, but I nodded my head.
When Big D arrived at dinnertime, I took him outside the room, just like the doctor had done with me and explained everything, and answered his questions. The head nurse came back to talk to Big D about him staying and me going home.
I actually went home that night. I drove myself in our car, the 10 minutes to our apartment in a quiet neighbourhood in Vancouver. It was so weird having this terrible freedom of going home without Dylan to feed or change, or buckle into a car seat. I parked the car and unlocked our apartment door, standing in the doorway a moment to smell the familiar smell of home: Dried herbs hanging in the kitchen, the musty dense smell of wet shoes by the door (that is very common in Vancouver), and the faint smell of disposable diapers in a tote bag by the door.
The walk down our narrow hall to the living room was heavy. My shoulders felt heavy, my eyelids were definitely heavy and as I turned the corner into the living room, I could smell the nursery calling me. I darkened the doorway of Dylan s bedroom and flipped the light switch. The bright blue paint shrunk my pupils and I closed my eyes. Tears fell. I swallowed hard. What kind of mother am I that I could leave my child in a hospital to come home and sleep in my comfortable bed? What did I eat that made him get sick from my breast milk; the same breast milk I insisted was best for him, despite the disdain from others? What did I expose him to at playgroup? At Baby Gap? On the street as strangers cooed at his innocent face? I fell to my knees and lay in the fetal position on the small mat in his room. I cried quietly, all the while wishing I could hold him and kiss him. My arms and lips ached for him. My entire heart felt as though it was being torn from my chest. It hurt so much.
48 hours and 2 Gamma Globulin treatments later, Dylan was not better. His fever had gone down one degree. That s it.
Doctor s then put him on steroids. A risky thing for an infant, but it worked and he recovered, albeit not completely. Today, at nearly 7 years old, he still has 2 aneurysms in his heart that hopefully will go away as his blood vessels grow to the size of these nagging things.
Every day is a blessing with Dylan. We aren t supposed to worry unless he complains of chest pain, but telling a mother not to worry is like telling Troll Baby not to poop 4 times a day.
Dylan goes every year for a complete heart checkup and so far, so good. He has to take baby Aspirin, which makes him prone to nosebleeds, but he plays soccer and hockey without a problem, and is an exceptionally bright child who is creative and sweet. The day he was born, he curled up inside my heart. I wish I could curl up inside his and fix the damage.
December 8th, 2005 at 12:22 am
Wow. WOW. I am without words. I just can’t imagine, can’t grasp the idea of having to go through that. My heart aches at the thought. You are a strong mama with a heart big enough for the both of you.
December 8th, 2005 at 1:49 am
I am sobbing for you, mama. This is every mother s nightmare.
Growing up, I knew a boy named Jonathan who was born with a three chambered heart. His parents were told he wouldn’t last a week. He did. Then they said not a year. He did. They said three years… he lived 12. And he was a great kid. I never understood the depth of fear and joy his mother must have lived with until I became a mom. Now I am constantly reminded how each day with my girls is a gift. Thank the spirits for your gift… he’s beautiful! And thank you for being brave enough and strong enough to share this story with us.
December 8th, 2005 at 2:14 am
Thank you for sharing this heartbreaking experience. I can’t even imagine what it must have been like. I was so glad to read at the end that he got through it all and is now a happy active little boy.
I don’t think there was a more perfect story to share for this week’s theme. Thanks!
December 8th, 2005 at 8:10 am
I read your blog everyday but today was really special. I’m sitting here at work, sobbing big tears as I read your story. My sister had meningitis and my daughter was born with Pulmonary Valve Stenosis. I know first hand the fears and terror. This story was beautiful. And Dylan!Way to go little man for fighting through. You’re a true little champ!
December 8th, 2005 at 9:17 am
I am sitting here typing this through tears…I can’t imagine what you go through on a daily basis with the thought of that nagging. Beautiful story, and inspiring to those read it:) HUGS
December 8th, 2005 at 1:05 pm
Karen, you take my breath away. I am sitting here with tears streaming down my face.
Your boys are sooo lucky to have you as there mom.
As a mother I couldnt imagine the fear that you went through, but the little man is doing amazing, miracles happen everyday…thank God they do.
Love you lots,
Laura
December 8th, 2005 at 6:49 pm
Dylan is so lucky. Obviously lucky that his condition was caught early enough BUT way more lucky that you’re his mom. Your children are blessed to have you. So very very blessed. Love you.
December 8th, 2005 at 8:45 pm
wow… just wow
December 8th, 2005 at 11:22 pm
I thought I left a comment yesterday but it doesn’t look like it worked. Your words brought me to tears and made me feel very grateful for what I have! I am so sorry that you and your family had to/are going through this. No parent should have to worry their child will be taken before their time. You are a very strong person and I’m glad you shared. I am also very happy that Dylan is still doing well!
December 8th, 2005 at 11:36 pm
Thank you all for your kind words. I am grateful as well of course, and the emotions really flooded back when I wrote this. Even pictures of that time make it hard to swallow. After the hospital stay, Dylan had to be on blood thinners that required we give him 2 needles a day, plus he was on steriods for months and was so puffy…it was really hard, and now it’s harder knowing he could be taken at any time. Somehow we still manage to parent him so that he will grow up to be a responsible, good person. Somehow we still snap at him, make him do his homework and eat his vegetables…. it’s like anything else, you just do it and you look back later and wonder how you did it. Hugs to you all - you are such a supportive group of people and I love sharing these things with you, along with the laughs and pictures…muah!
December 9th, 2005 at 6:02 am
oh my…..i have no words….
… thinking right now that Dylan and Nicky are the same age, i started to wonder just what i was doing at the very same moment you were in the hospital…. God is good. God must have a special plan for Dylan….Praise Him for helping your son get through this trial in his life…
December 9th, 2005 at 10:38 am
Karen,
I related so much to your story…when Tessa was five weeks old she had a fever and we had to do the whole ER and spinal tap thing. My heart was in my throat. It ended up being “probably just a virus” but I’ll never forget how it felt to have a sick baby. You would cut off your own arm if it would change anything! Dylan is lucky to have such a strong, loving mama. Bless you and the fam. xoxo
December 9th, 2005 at 11:56 pm
Karen,you are so brave and so strong. This was amazing, heartwrenching and yet wonderful to read. Such a different side of you than you normally show us. What a terrifying story. I cannot imagine how your heart must move every time something happens to your little boy–a fall, a nosebleed, any overexertion. Dylan is lucky to have you as his mama…
December 10th, 2005 at 6:50 am
Thank you for sharing this. This past week, I have been in my own world of self-pity because we have just found out that my 3 year old only son is high functioning autistic. But, he’s HERE. And, he’s ALIVE.
I don’t know if you are a Christian, but this is the verse that I have hung onto for the past week:
Romans 8:28
And we know that in all things God works for the good of those who love him, who have been called according to his purpose.
You never know God’s plan. But, God is faithful and He has just used your experience to minister to someone else: Me.
I’ll be praying for Dylan.
December 10th, 2005 at 9:24 am
I can not even imagine the terror and the helplessness you felt when Dylan was ill, and I am sorry for the lingering fear that you must have every day. Thanks for sharing this story. Things like that remind you of what really matter…
December 10th, 2005 at 11:53 am
Karen, I followed you from verymom’s blog as I saw that you had posted the babymoon entry in Urban Dictionary.
I’m so glad to have found you. Yes, I can relate with the fears you face as I am also a Special Mother of a baby born with a congenital diaphragmatic hernia. I didn’t see my baby till after 4 days of his birth, wondering whether I’d see him at all. But *knock on wood* he is 6 now, and we live and love…
December 12th, 2005 at 4:12 pm
Wow - I don’t have to say “I can’t imagine” because I’ve been there. My son got a fever at 15 days of age and they gave him a spinal and then literally ran him over to the NICU. He was totally septic and had pneumonia - I should write up the whole story. Like Dylan he survived but the terror and the guilt over that episode are, to this day, 19 years later, unparalleled in my life.
I’m so glad our boys are okay.
Thanks for renting my blog and getting me over here!
December 13th, 2005 at 8:19 pm
Mama K,
Blog trawling tonight and came across this.
Wow.
I too hold membership in this special club for mothers of critically ill babies, although I only got my union card this last March.
I guess no matter who hard we try to keep on, it’s never going to truly go away, eh? That experience of beginning to plan a funeral with a tiny casket, to begin to consider the possiblity of living without a life you don’t remember living without will never fade completly. But good to know that it *can* be shoved into the back burner and that the scale of life will continue to slide to allow it to be lived to the fullest.
December 21st, 2005 at 6:24 pm
What amazing strength you have Karen. Though my small story wasn’t that serious, I too understand the power of a mothers love. During my first docs visit, they noticed on the sonogram, a large black spot in my stomach.
Plus, they couldn’t find the baby, and I was terrified. I came back a few hours later, after I had drank enough water to raise my bladder, for a better view of the growth. The next day, I went to the hospital, and they ruled out cancer and it was a baseball sized fibroid. For 7 months, they monitored the baby, saying that the growth, would decrease the size of my baby, perhaps, limit the growth to the babies head. I wouldn’t buy anything, and told others not to either. Finally at 7 months, the doctor said the babies head wasn’t blocked by the growth, and that the head was of normal size now. I was relieved, and finally could breathe.
While I couldn’t deliver normally, due to the fibroid, the c-section was a go and she was born 10 and 1/2 pounds. She is so precious to me and I love her to no end.
God bless you Karen and your strength, guts, and your glory, precious Little D!
Hugs,
Stacy (taylorsmom)
May 3rd, 2006 at 6:36 pm
[...] We spent 8 hours at Children’s Emergency last night after Dylan had been experiencing chest pains yesterday at school. No one from school called me and he told me once he got home. Yes, I’m angry about that, but redirecting that energy into being grateful that he is alright.. He’s been through the ringer with his heart, and this constant threat wears on us. He’s okay. We’re tired though, and off to spend the day together. I’ve hugged him tight many times in the last 24 hours. There will be further testing and I’m more scared than what I’m letting on in front of him. Have a good weekend. Posted by karenrani @ 9:27 am • Dylan [...]
May 3rd, 2006 at 7:01 pm
[...] Well today is Dylan’s heart workup at the Children’s Hospital. I can’t say that I’m doing very well this morning, but I’m hiding my tension from the kids. I haven’t slept much the last two nights, replaying every moment in Dylan’s life. I do this alot, and I try so hard not to let the worry take our lives over. Sometimes my thoughts go toward awful things, things out of my control, things I wish I could change. Having a child with a ticking time bomb in his chest can be very unnerving. [...]
May 3rd, 2006 at 10:48 pm
I felt, within my heart, every word, every pain staking step, every feeling that you felt, and still feel. Life can throw some incredulous curve balls at times, but know that through the power of your love, that child will be ok. Such a frightening experience for you both! I don’t know if you’ve read the story of my daughter or not, but maybe it might be of inspiration and hope…..
http://www.azjade.com/index.php/blog/the_princess_and_the_peanut/
May 7th, 2006 at 6:42 pm
[...] From day one we were proud of you and that has never stopped. You were an amazing baby, and even when life dealt you a hardship at 3 months of age, you managed to pull through and fight to this day. When we moved from our tiny apartment in Vancouver to be closer to family here, you adjusted easily and were always happy. [...]
May 28th, 2006 at 10:15 am
[...] 20. My oldest son had Kawasaki’s Disease at 3 months of age. [...]
May 28th, 2006 at 10:18 am
[...] Today is Dylan’s heart workup at the Children’s Hospital. I can’t say that I’m doing very well this morning, but I’m hiding my tension from the kids. I haven’t slept much the last two nights, replaying every moment in Dylan’s life. I do this alot, and I try so hard not to let the worry take our lives over. Sometimes my thoughts go toward awful things, things out of my control, things I wish I could change. Having a child with a ticking time bomb in his chest can be very unnerving. [...]
July 10th, 2006 at 8:00 am
[...] And I meant it. I’m not one of those parents who is miserable all damn day because I’m fighting the tide of children’s demands in order to find solitude or peace. Truth is, those who know me well, know that every day with Dylan is a blessing, that Thomas is a bit of a challenge, but a lovable one, and that I spend alot of time with my kids, enjoying them as they learn new things, and in turn, teach ME new things. [...]
July 25th, 2006 at 12:58 am
[...] You’ve been there through the birth of both of our children, watching their tiny bodies be born. You’ve been there through Dylan’s bout with Kawasaki’s Disease and through my insanity that is Troll Baby. [...]
July 25th, 2006 at 3:33 am
Leiomyoma commonly used term for the fibroids, which originate in the uterus. Fibroids are usually the benign smooth muscle tumors of the uterus. A fibroid tumor is another name for fibroma, a tumor of fibrous connective tissue.
September 20th, 2006 at 5:45 pm
My youngest, Logan, was born with a congenital defect. He was born, and we did that whole thing, and were ready to leave. We were literally packed, waiting for the nurse who’d gone to get the discharge papers. The doctor had come in earlier listening to his heart one more time, as “something was just bugging” her. She ordered an echo. They brought him back, thought we were cleared to leave. Then the entire NICU team, with incubator, and scrubs, and masks on came in and tried to take my baby from me. No one had shared the results (The doctor forgot to call us with the results) - therefore I refused to let them take my baby. They had to call the doctor to me first - I think when I told them I wanted to call security someone finally figured out we had NO CLUE why they were there. Turned out that he has aortic stinosis, with a bicuspid valve. The valve issue has caused leakage that has led to left ventricular hypertrophy. We don’t really know what will happen. He’s four now. The original plan was transplant of plastic parts at 22 years of age (when he’s done growing). He won’t last. The new plan is 9 years old (with subsequent surgeries to change out the parts as he grows). He’s too small now, so if something happens they’ll reroute his heart through his pulmonary artery. So far, he’s smaller and sweats more than others his age. And he won’t be able to play contact sports. No other restrictions. EKG & Echo every 6 months, and we wait and watch. I’m not scared of before, I’m not scared of after. But I’m terrified out of my skull of the actual surgery - even if it is 5 years away.
November 15th, 2006 at 1:19 pm
[...] It makes me sad that I feel this way. Nothing horrible has ever happened to my kids, aside from Dylan’s Kawasaki’s Disease. But when I watch a stranger talk to my kids in a store, or when an authority figure in my son’s life places his/her hand on his shoulder or ruffles the baby’s hair, my imagination takes over and I wonder about that person. Why do they want to talk to my kids? [...]
February 1st, 2007 at 7:27 pm
[...] Mrs. Corrance, I am so very sorry, for your son, for your loss, and for my words, which must have upset you greatly. As a mother of a son with a heart condition, I can certainly sympathize with how you must have felt when you read my original post. I wish I hadn’t written something so careless about your son in the first place. I feel absolutely terrible. [...]
February 11th, 2007 at 11:41 pm
[...] The next two days are going to be tense.? I took Dylan to the hospital this morning.? If you don’t know his background, here’s the summary:? Dylan was diagnosed at 3 months of age with Kawasaki Disease, which resulted in aneurysms in his heart.? He has been through one surgery, and gone from us giving him 2 needles of heparin (blood-thinner) to his coronary arteries “growing into” all but one aneurysm, and being on baby asprin, once every other day to prevent scarring in his heart. [...]
February 15th, 2007 at 2:39 pm
[...] get right now - I know how scared she must feel.? Please head over there and send good wishes. xo Stumble it! Posted by Karen Rani @ 2:38pm [...]
February 18th, 2007 at 5:15 am
[...] 3) Favorite posts: Heart, Men Without Hats, Selfish,?and Guilt Begat Pride [...]
April 28th, 2008 at 9:57 pm
[...] It’s funny I took him in to the hospital because normally I would have waited a bit to see if it was an infection. Something about this one was different. It reminds me of when Dylan was a baby and my instincts kicked in and he ended up having Kawasaki’s*. [...]