Friday, November 9, 2012
Procedure Complete
Her procedure went well. They were able to open the left pulmonary branch with the balloon nicely and it responded very well. The right pulmonary branch was more complicated and they were able to make it better, but not where it needs to be. Soooooo this means we've bought some time! Her doctor said she will be monitored closely for the next 6 months going to her cardiologist for testing about every 3-4 weeks. Best case she won't need another open heart surgery for 12 months. If things begin to narrow again (stenosis and scarring) we are looking at 6 months. Overall I'm pleased she can continue to grown and recover from the first surgery. Procedure in my mind was a success!
Ry's Cath Procedure
Whew, we are at the hospital for Ryleigh's cath procedure. Hoping this will have good results. I've been fine until we pulled in the parking garage and now I struggling to not start crying. She's so peaceful sleeping, but I know she will wake wanting food soon. Wolfsons Children's Hospital. Updates to come. We are checking in now, they will take her back in a bit.
Wednesday, October 31, 2012
Heart Mom
While I would love to say it gets easier being a heart mom, it would be a lie. It is such an emotional roller coaster. Pain finds you even when it is not your own baby in crisis. You find yourself checking in on other babies that may be sick, grieving with other heart parents who have lost, and rejoicing in moments of good news and milestones. This week I was elated to hear of two new heart babies being born and doing great in spite of having a CHD, both TA babies like Ry, but devastatingly saddened to hear of two heart babies who lost their battle. I feel so helpless! It makes me stop and think about the little Halloween outfits that will unexpectedly be unworn, the purchased baby clothes that once brought a smile, now bring tears of sadness as they are gently packed away, the empty car seat staying in the car until the strength to remove it is found, the phone calls of what should be well wishes going unanswered because there are no answers to give, the parents finding courage to face the unsettled quiet of a house that should be filled with first moments, chatter, and a baby's hungry cries. Every single day with my daughter is a gift!!!! I know she is special and I treasure every moment because as a heart mom you never know if it will be your last. Even perfectly simple procedures can have devastating results. My mind just will not stop thinking of the pain heart parents who have lost a baby/child go through, but I am inspired at how many heart babies are thriving and how medicine is advancing - it is hope after all, which is what becomes your best friend right beside uncertainty. Hats off to other heart moms, you are amazing, beautiful, and strong! To all of the CHD kids we know, if I could say one thing to you it would be you inspire me, you have shown me Ry has no limits and while there will be challenges, there is nothing that can stop greatness from being great!
Tuesday, October 9, 2012
Ry's 1st Official Pediatrician Visit - 11 Week Measurements
So for Ry’s age, weight, length, and head circumference, Ry
comes in at 39% in head circumference, 55% in length, and a very low 17% in
weight. 11 weeks = 10.1lbs, 23 ¼” long, and head circumference is 39cm. She didn’t
like her shots, but only cried for a minute or two. She eats about 22-24 ounces
of formula a day, but should be at about 28-32 ounces. Pediatrician says she has
some reflux, so she will go on a prescription for that, but did note she looks
great, so no worries here!
Monday, October 8, 2012
Possible Future of Valve Replacements
I saw this posted on a CHD support site. It appears doctors in Boston are having success with nonhuman expandable valves. This could change the face of valve replacement for CHD kids!
It has given me a reason to smile. I would love it if Ry only had to go through one more OHS!
http://www.sacbee.com/2012/10/03/4877579/boston-childrens-surgeons-pilot.html
It has given me a reason to smile. I would love it if Ry only had to go through one more OHS!
http://www.sacbee.com/2012/10/03/4877579/boston-childrens-surgeons-pilot.html
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.
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.
XX
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