Saturday, October 6, 2012

"Thoughts of a Mother", by an NICU Nurse

Another heart mom shared this with me and I thought it would be nice to post here. This was written by an NICU nurse about all special needs children. Pretty neat, too bad even in the heart community people try to "outdo" each other by one upping someone else with "my kid has a worse story than yours." Well for the record I like the fact that Ry is a textbook case and the road has been smooth, we like upbeat news and like to share that our lives up to this point have been pretty drama free, we don't feel the need to gain sympathy or the attention of others as we save it for when it is really needed or we reserve it for the families that truly need the thoughts and well wishes who are not attention seekers. However, we get those that think we are bragging because she is such a good case when other people's babies are dying, so you can't really win for losing! I will never feel bad or be made to feel bad because my child lived and is doing great! She is a miracle and everyone needs to embrace that!

Thoughts of a Mother
By Maureen K. Higgins

Many of you I have never even met face to face, but I’ve searched you out every day. I’ve looked for you on the Internet, on playgrounds and in grocery stores. I’ve become an expert at identifying you. You are well worn. You are stronger than you ever wanted to be. Your words ring experience, experience you culled with your very heart and soul. You are compassionate beyond the expectations of this world. You are my “sisters.”

Yes, you and I, my friend, are sisters in a sorority. A very elite sorority. We are special. Just like any other sorority, we were chosen to be members. Some of us were invited to join immediately, some not for months or even years. Some of us even tried to refuse membership, but to no avail.

We were initiated in neurologist’s offices and NICU units, in obstetrician’ s offices, in emergency rooms, and during ultrasounds. We were initiated with somber telephone calls, consultations, evaluations, blood tests, x-rays, MRI films, and heart surgeries.

All of us have one thing in common. One day things were fine. We were pregnant, or we had just given birth, or we were nursing our newborn, or we were playing with our toddler. Yes, one minute everything was fine. Then, whether it happened in an instant, as it often does, or over the course of a few weeks or months, our entire lives changed. Something wasn’t quite right. Then we found ourselves mothers of children with special needs.

We are united, we sisters, regardless of the diversity of our children’s special needs. Some of our children undergo chemotherapy. Some need respirators and ventilators. Some are unable to talk or hear, some are unable to walk. Some eat through feeding tubes. Some live in a different world.

We do not discriminate against those mothers whose children’s needs are not as “special” as our child’s. We have mutual respect and empathy for all the women who walk in our shoes.

We are knowledgeable. We have educated ourselves with whatever materials we could find. We know “the” specialists in the field. We know “the” neurologists, “the” hospitals, “the” wonder drugs, “the” treatments. We know “the” tests that need to be done, we know “the” degenerative and progressive diseases and we hold our breath while our children are tested for them. Without formal education, we could become board certified in neurology, endocrinology, and psychiatry.

We have taken on our insurance companies and school boards to get what our children need to survive, and to flourish. We have prevailed upon the State to include augmentative communication devices in special education classes and mainstream schools for our children with cerebral palsy. We have labored to prove to insurance companies the medical necessity of gait trainers and other adaptive equipment for our children with spinal cord defects. We have sued municipalities to have our children properly classified so they could receive education and evaluation commensurate with their diagnosis.

We have learned to deal with the rest of the world, even if that means walking away from it. We have tolerated scorn in supermarkets during “tantrums” and gritted our teeth while discipline was advocated by the person behind us on line. We have tolerated inane suggestions and home remedies from well-meaning strangers. We have tolerated mothers of children without special needs complaining about chicken pox and ear infections. We have learned that many of our closest friends can’t understand what it’s like to be in our sorority, and don’t even want to try.

We have our own personal copies of Emily Perl Kingsley’s “A Trip To Holland” and Erma Bombeck’s “The Special Mother.” We keep them by our bedside and read and reread them during our toughest hours. We have coped with holidays. We have found ways to get our physically handicapped children to the neighbors’ front doors on Halloween, and we have found ways to help our deaf children form the words, “trick or treat.” We have painted a canvas of lights and a blazing Yule log with our words for our blind children. We have pureed turkey on Thanksgiving. We have bought white chocolate bunnies for Easter. And all the while, we have tried to create a festive atmosphere for the rest of our family.

We’ve gotten up every morning since our journey began wondering how we’d make it through another day, and gone to bed every evening not sure how we did it.

We’ve mourned the fact that we never got to relax and sip red wine in Italy. We’ve mourned the fact that our trip to Holland has required much more baggage than we ever imagined when we first visited the travel agent. And we’ve mourned because we left for the airport without most of the things we needed for the trip.

But we, sisters, we keep the faith always. We never stop believing. Our love for our special children and our belief in all that they will achieve in life knows no bounds. We dream of them scoring touchdowns and extra points and home runs. We visualize them running sprints and marathons. We dream of them planting vegetable seeds, riding horses and chopping down trees. We hear their angelic voices singing Christmas carols. We see their palettes smeared with watercolors, and their fingers flying over ivory keys in a concert hall. We are amazed at the grace of their pirouettes. We never, never stop believing in all they will accomplish as they pass through this world.

But in the meantime, my sisters, the most important thing we do, is hold tight to their little hands as together, we special mothers and our special children, reach for the stars.

Cracking herself up

Friday, October 5, 2012

My wish

I certainly hope these tiny feet will be used for dancing.

Truncus Arteriosus Surgery Video

This video shows a baby undergoing a Truncus repair just like Ry's. I found it interesting that they placed a 10MM conduit in this preemie, when Ry got only a 9MM and she was full term and a good weight. You want a good size conduit so the need for the next surgery is farther out. She will more than likely have another OHS in a year or two.

Details about the video:
Redmond Burke MD, Chief of Pediatric Cardiovascular Surgery at Miami Children's Hospital, demonstrates the operative repair and postoperative recovery for a premature newborn baby with Truncus Arteriosus. The video is graphic. The program website is and Dr Burke can be reached at

Cardiac Program Website:
Youtube channel:

I hope this helps those who are about to go through this to understand this complex surgery. It helped me, but I can't believe little Ry went through this. I loved when they started the heart back after the repair!

Be well friends!
Lee Ann

Wednesday, October 3, 2012

A little ode to the kids

Here are our babies! Cael as a baby and now with Ry.

The many faces of Ry

She has so many neat faces. Here are a few. She is such a happy baby! She almost has me forgetting she is a heart baby. She's 10 weeks this week! Time flys!

Her zipper

I created this photo for a cake we want to have made for the hospital staff that took care of Ryleigh.

Ryleigh is growing and doing great.

Well they say no news is good news and this is also true of Ryleigh. She's doing so good, eating well, outgrowing her newborn clothes, and keeps me on my toes. She's also a lot like her momma, low maintenance. She goes in a couple of weeks for a cardiology appt. to determine when her cath lab surgery will be, so that will be my next update. Until then enjoy some photos!