About mid-June, I received an email from Abby Scklarek that began: “I just read the article in Parents Magazine and I knew I had to get in touch with you…” It turns out Abby has a one-year-old son, Colin, who also has scimitar syndrome. She shared with me that he would need heart surgery sometime within the next 2 years.
After Colin’s cardiac catheterization, it was determined he should be scheduled for surgery sooner rather than later. I heard from Abby this morning that Colin’s surgery will be performed at Children’s Hospital Boston on Tuesday, October 19. “While we are scared and nervous beyond belief,” Abby says, “we are also excited to get his little heart fixed, and get this behind us. Would you put us on your prayer list?”
Absolutely! Friends of Nathan’s Prayer, please remember Colin and his family as surgery approaches.
Tags: cardiac catheterization, Children's Hospital Boston, heart surgery, Nathan's Prayer, Scimitar Syndrome
Angie from Yukon, Oklahoma writes:
My daughter just went in on Thursday August 26, 2010 to have the catherization surgery to close her ASD but when they got in they found out that it wasn’t the kind that could be closed that way. They also found that she had the Partial Anomalous Pulmonary Venous Return along with her ASD. Now we are waiting to schedule open heart surgery to fix both conditions. She is a very happy 3 year old child. Please put her and our family on the Prayer List. Thank You and God Bless!
Angie, our family and friends of Nathan’s Prayer will be lifting you up as surgery approaches. Nathan had this surgery in July of 2006. Even though his procedure was complicated by his dextrocardia, everything went very well. An excellent description of PAPVR and the surgery can be found on pted.org. Notice on page three that recovery is described as “usually straightforward.” Try to take comfort in those words. I say try because I know when it’s your own child, this is incredibly frightening. Love and prayers to your sweet girl!
Tags: atrial septal defect, heart surgery, Nathan's Prayer, PAPVR, Partial Anomalous Pulmonary Venous Return
My brother Tom and I pose at our house in Gulfport, Mississippi, almost a year before Hurricane Camille.
[This is a re-run of a post from last year. Today is the 41st anniversary of Hurricane Camille.]
August of 1969 could be described as a month of turmoil and rebellion. The Vietnam War was in full swing, provoking protests in the streets and heated disagreements at the dinner table. The infamous Charles Manson cult went on a murderous rampage, killing Actress Sharon Tate and six other prominent Californians. And on a 600-acre dairy farm in New York, a half million free-loving, mind-altered hippies stayed stoked and stoned during the Woodstock Music Festival.
I was only nine-years-old, so I wasn’t exactly tuned in to the events swirling around me. But I do remember August 17-18, 1969. As Blood, Sweat, & Tears belted out “Something Comin’ On” at Woodstock, my little brother Tom and I were hunkered down behind a small table turned on its side, hoping the fierce winds of Hurricane Camille would not blow in our windows or cause our house to collapse.
Destruction from Hurricane Camille, Mississippi Gulf Coast.
We had been upstairs, near the same room pictured above, watching the occasional transformer explode from our window, the only hint of light in the pitch black sky. Then, in the glow of candle light, the ceiling collapsed on us, raining wet leaves and bristly branches on our heads. Terrified that the house might be caving in, we ran screaming to the lower floor. We stayed there behind that shielding table the rest of the storm. Tom finally fell asleep, but I was wild-eyed the entire night, fretting the whole house was going to crush me to death at any minute.
Gulfport's Super Slide was almost identical to this one from Virginia.
A huge stack of burlap sacks were piled in our house that evening. We were storing them for an entrepreneur cousin of my dad’s who had just built a “Super Slide” on the beach in Gulfport. It was a new tourist attraction, a towering multi-lane slide. Ticket-holders would carry the burlap sacks to the top, lay them out, and slide in waves to the bottom. Cousin Dan was afraid the hurricane was going to blow the sacks away, so he asked us to store them. They came in handy, soaking up the rain that poured in from the gaping hole in the ceiling. The Super Slide and most everything else on the beach was swept away.
When the storm cleared, my dad and I walked to the beach to see the devastation. Everyone was awestruck and certain that Camille was the worst hurricane the world would ever see.
[See also: SS Hurricane Camille Gift Shop and Hurricane Katrina - Four Year Anniversary, a four part essay.]
Needing a little on-the-road encouragement, I purchased “WOW Gospel 2010” a few months ago. Thirty of the most popular songs of gospel radio are in this collection, and I have enjoyed them all.
But there’s one song in particular that I find myself playing over and over–Fred Hammond’s “They That Wait,” which turns Isaiah 40:31 into uplifting lyrics. This song is chicken soup for your musical soul.
It turns out Nathan has a thing for my song, too. Recently, I took the disc with Hammond’s song out of my car to play at home. The other disc remained in the car, so I listened to it almost exclusively while driving (“Back II Eden” is awesome, too). Nathan noticed the change. “Mom,” he says, “play ‘They That Wait.’” “Sorry, Buddy, it’s in the house,” I said.
I told him I’d put it back in, but I kept forgetting, and he kept requesting. I finally remembered to put it back in the car today, so we are -once again- rolling down the road and mounting up with wings! See if this rings your bell, too:
Tags: Fred Hammond, Nathan
Having a newborn transferred to the neonatal intensive care unit is unimaginable to most parents, especially when the medical issue that warrants the transfer is unexpected. I was recently emailed by a friend who gave birth 4 weeks early. Her baby was transferred to Children’s Hospital in Minneapolis from the community hospital where she was born. She emailed me to tell me the news and expressed gratitude for having some information thanks to my experience with Sydney in the NICU. I was inspired to share my tips for surviving time with a child in intensive care.
1. ARRIVAL. Most parents arriving to the NICU are overwhelmed, emotional, and scared. I remember receiving countless binders and folders with information, instructions on how to label and store my expressed breast milk, information about parent sleep rooms. Nurses and other staff introduced themselves. All I wanted to do was to hold my baby and to talk to the doctors about her. Ask dad (if he’s up to it) or a family friend to sort through the information for you and later give you an abbreviated summary.
2. REST… when you can, as often as you can. New mothers are exhausted after childbirth, exhausted by the feeding schedule of the baby. Add the stress of having a child in the NICU and the effect is compounded exponentially. I felt most comfortable napping in a recliner chair next to Sydney’s incubator. Knowing my baby was near gave me comfort, and I was so exhausted I didn’t mind the background noise of monitors, alarms and hospital staff. It’s the only place where I could fall asleep. Later, as I got accustomed to the unit, I felt ok going to the parent sleep room for a proper nap on a bed. Find the place where you CAN fall asleep and rest as much as you can.
3. RESOURCES. Use the resources available:
a. The Chaplin, for spiritual support and prayer.
b. The Social Worker, for emotional and mental support, meal programs, parking discounts.
c. The Care Coordinator, for help with insurance benefits, home care logistics. Sydney was only insured on her father’s insurance and it had a 2 million lifetime maximum. Thanks to advice from the care coordinator, I signed up to insure Sydney through my employer as well, and thus increased her lifetime maximum by an additional 5 million dollars. Sydney maximized her father’s insurance maximum after three months in the NICU.
d. Use Caring Bridge to inform family members about the status of the baby, or designate a family spokesperson to relay information. I received many well-meant calls for information about Sydney that I didn’t have the time to return.
e. Allow visitors OR politely ask for space. Everyone handles stress differently. I wanted to be alone with Sydney and keep my focus and energy just on her. But for others, having family and friends around is soothing and helpful. Find out what feels BEST for you and do that.
4. NURSES. Learn their names. In my time of incredible stress, my ability to remember names didn’t falter. But a good idea is to keep a notebook of names. Sydney had a new nurse every 8 hours during the first month of her time in the NICU. After that, I noticed more consistency. I later learned that nurses in my baby’s unit could sign up to be primary caregivers of a particular patient, meaning that each time they reported to work, they took care of the same baby. I learned this and was on a mission to get primary care givers for Sydney. If Sydney had a nurse I liked, I asked him or her to “sign up” for Sydney. Some nurses don’t take primary patients. And every hospital unit policy is different. But having a team of consistent caretakers was invaluable to me- these nurses were familiar with Sydney, what was normal for her, and what was atypical.
5. DOCTORS. My preconceived notion of what physicians are like (from experience in “adult medicine”) was altered. What I found was compassionate, faith-based men and women that combined medical knowledge, communication skills and empathy to take care of my infant and help me make the best decisions for her. I found it was most helpful to compartmentalize my emotions when speaking to the doctors. I found they would share more information the calmer I appeared. I kept a notebook with notes and questions.
6. THE BABY! The most important person, of course, was my infant baby girl. The lactation consultants helped me with feeding, but also emphasized the importance of skin to skin contact (kangaroo care), interaction (singing, talking) and holding her as much as possible. Although I was first intimidated by her feeding tubes, IVs and oxygen lines (and later her trach), I quickly learned how to pick her up and hold her and keep all her lines intact. And this gave me the greatest joy, the greatest relief and centered my purpose: to be her mother.
If you have any specific questions related to this article, please feel free to email Nathan’s Prayer directly at karen@nathansprayer.com or post the question as a comment. I will keep anonymity when requested.
Tags: Nathan's Prayer, Neonatal Intensive Care Unit, NICU, Sydney
