Luke’s 10 – Update

So, I am really bad about updating this blog but want to keep it going for those of you out there who are just starting this “heart” journey with your baby or those who are looking for others who share their story.

Luke is 10 and in 5th grade.  He sees his cardiologist on an annual basis and has had a very steady path of health.  He has mild “neo-aortic insufficency” which means he has a mild leak in the aortic valve and the neo just means they placed the aortic root in a new spot when they did his open heart surgery.    We’ve been following this leak for years and it hasn’t changed yet.

Luke was on a medicine called Enalapril every 12 hours for years to hopefully lower the pressures in his heart and preserve valve function.  Our cardiologist decided to take him off the medicine this year.  When Luke was on Enalapril he got tired easier, was bothered by heat and dehydration very easily and suffered from migraines.  Those issues seemed to resolve as soon as he stopped taking the medicine.

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Luke’s cardiologist talked to me about the possibility of learning disabilities that can be related to having been on cardio pulmonary bypass (heart lung bypass machine) during open hear surgery.  Luke’s condition d-TGA carries a high risk of ADHD. Luke had greater complications than most with d-TGA, suffering a coronary event (heart attack) after his first open heart surgery and he had to be rushed back into surgery and put back on the bypass machine for some time.  Luke did have delays with his gross motor development and we worked with ECI (early childhood intervention) to get him physical therapy until he caught up.  

I feel visual-spatial visual-motor skills have always been a challenge for Luke (kicking a ball, hitting a t-ball, crossing midline).  His skills with executive functioning are also an area where he has struggled (multiple step directions, remembering steps, etc). Inattention has been a big issue since starting kindergarten.  

I took Luke for a neuro-psychological evaluation at the end of 2nd grade. We found that Luke has pretty severe ADHD-PI (primarily inattentive). He was also diagnosed with dysgraphia, which is a neurological disorder that makes it hard, physically, to write. It’s in the same family as dyslexia.  We’re trying to get him as much support as possible at school…. and we’re hitting it hard at home too.

We also learned Luke is above average intelligence and above average in a lot of other areas.  He’s bright, creative, empathetic and has a really great sense of humor.  He will do great in life and is capable of anything he puts his mind to.  Having learning problems is not an indicator of intelligence and does not mean your kid is lazy.    If these issues affect your kid, they likely have to work harder than other kids to do what comes easily for others… and that’s frustrating and can hit confidence.

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We went with an IEP for Luke this year so he’s in the “collaborative” classroom where there is an extra teacher in the classroom during math, language arts, science and social studies to move around and help all the kids who need extra help.   This is a resource available through a federal program called IDEA.  The other kids in the class don’t know who the collaborative teacher is there for because they help all the kids… but really focus in on the kids with the IEPs.

He has received Occupational Therapy and Vision Therapy which have made a world of difference for his in his ability and confidence.  We’re getting help but realize he’ll still need extra time, accommodations, tutoring and support as he moves through school — like a lot of kids do who haven’t had open heart surgery.

If you suspect there is a problem don’t delay getting your child evaluated.  There are tons of resources available privately and at school (federal IDEA program) to help children overcome these issues.  New research shows that many children with congenital heart disease (CHD) are at risk of developmental delays that can affect learning, behavior and social skills.  But, there is good news; most children with CHD do not have severe developmental issues, and can be helped with the appropriate help at school. 

How can you help your child?

  1. Understand how the CHD may affect your child.  Read the American Heart Association article published last year on neurodevelopmental outcomes to see the connection between these and CHD, and consider having your child tested using the guidelines provided.  
  2. Make sure you understand how best to communicate your child’s needs with the school.  You need to be familiar with Early Intervention, 504 plans, and Individualized Education Plans (IEPs) to ensure that your child gets the best help possible.

Below are some resources I’ve found:

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Anyhow, I wanted to share what I’ve learned and encourage you to continue advocating for your kid and getting help and resources where needed.

That’s all for now.  God bless!

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It’s been a while…

Hi!  It’s been quite a while since I’ve updated this blog.  Luke is no longer “babyluke” but instead a rambunctious 5-year old who started kindergarten this year.  His heart check-ups have been really good with minimal changes over the years.  He does have a mildly leaky aortic valve for which he takes a medication called Enalapril every 12 hours (7am and 7pm).  Our cardiologist put him on the medication when he was 2 because studies show lowering the pressures in the heart can help preserve the valve function.  Other than that he is doing really well.  I can’t say I don’t worry… a lot.  However, I know that it’s normal.  I never hesitate to call or visit the cardiologist if I’m worried about something as I’d rather have my mind put at ease.  Luckily we’ve got a really wonderful doctor who takes my concerns seriously and talks me down when I need it.  Ha!

Anyhow, here are some updated photos of our precious Luke and family.  Since I last posted we’ve added another baby girl to our family.  Both of our girls are heart healthy!

If you’ve found this blog because you’re just starting your “heart mom or dad” journey please don’t hesitate to contact me.  There is a great, wonderful, caring heart parent community out there I’d love to introduce you to.  God bless.

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Elizabeth Grace

Elizabeth is continuing to do well in the NICU. Her breast-milk feedings have increased to 12ml every 4 hours and she is tolerating them well. She has gained a little weight back and was 2lbs 7oz this morning.

She is on room level oxygen and is no longer on the CPAP. She has a nasal cannula and has been doing well on it. She is still having “episodes” where she forgets to breath but her alarms go off, the nurses rub her back and she snaps right back. As an example, she had five “episodes” since 7:30pm last night but the doctor said for her age, size and being on the nasal cannula having 5 is actually not bad. She is on a higher dose of caffeine to help stimulate her breathing and the hope is as it builds up in her system she will have fewer of these episodes. If the episodes don’t improve or get worse they will put her back on the CPAP for a while until her nervous system matures more.

I am able to hold Elizabeth twice a day for Kangaroo Care, which is direct skin to skin contact. She responds well to the Kangaroo Care, her stats all improve when I’m holding her. I’m sure my stats improve too!

Luke isn’t allowed in the NICU (only 18 and older are allowed) so he hasn’t been able to see his baby sister yet. We have shown him photos and talk about Elizabeth all the time though. He is a bit confused still but excited to meet her.