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.


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.


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:




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!


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.







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.

Elizabeth Grace Hundley

Hi Everyone,

We are happy to announce the arrival of our new addition Elizabeth Grace Hundley!  Excited to enter the world, Elizabeth Grace, a little miracle at 2lbs 9oz and 15.4 inches long, arrived just shy of 10 weeks early on August 2nd.

It was quite a traumatic time for both Elizabeth and I, though we are both doing well now.  I suffered a placental abruption just as we were getting ready for bed Sunday night. The ambulance arrived within 5 minutes and rushed me over to St. David’s Hospital downtown.  Because of the massive amount of bleeding the doctor rushed us into surgery and delivered Elizabeth.  Elizabeth came out crying and feisty, by the grace of God.

I had a difficult time in surgery because besides having a placental abruption they discovered I had a rare condition called placenta accreta. The placenta had grown into the muscle of my uterous and caused those contractions that play a role in minimizing blood loss to stop. I apparently lost so much blood I didn’t have protein/plasma in my blood to stop bleeding and I was hemorrhaging.  After having had three blood transfusions and two plasma transfusions our wonderful and talented doctor was able to save me.  I am out of the hospital and feeling better every day.

Elizabeth is in the NICU breathing on her own.  Because she was born at 30-weeks her nervous system isn’t fully developed.  She has periodic episodes of apnea and bradycardia.  To help her body to remember to breath she is wearing a CPAP.  The CPAP does not breath for her but rather keeps a steady stream of air going into her lungs to remind her body to breath when it forgets.  In addition she is on a daily dose of caffine to stimulate her breathing. She has been doing well and seems to be having fewer apnea episodes each day.  She has started to take small non-nutritional breastmilk feeds to stimulate her digestive system.  Unfortunately, she has been having a little trouble digesting the milk so they are proceeding very slowly and carefully.

Overall we are very pleased with her progress and are told we can expect her home in 5-8 weeks.  Jon is keeping busy helping out with the Luke, working and being a taxi driver to and from the hospital.  We appreciate all of the well wishes and prayers.  We’ll keep you posted!

Potty Training in Full Force

Luke is making real progress with potty training…. uh, when he feels like it. 🙂  We have tempted him with M&M’s, a cupcake, a new train, and a tube of plastic bugs.  He gets M&M’s for “wee wee” and a special bigger treat for “doo doo”.   He is really into watching his “Once Upon a Potty Video” while he’s working on going.  He loves to sing the songs and talk about what the other kids are doing.  Yeah progress!!!

Luke eating breakfast while sitting on his potty

Luke’s “Doo Doo” cupcake treat

Christmas Day

I woke Luke up.  I tried to be patient… but I failed.  He was a little grouchy at first but after a few minutes of discussing presents Santa might have left him he was persuaded to check it out.  I think he was a little confused at first.

We had lunch with Luke’s Great Grandmother Lucille.  Luke was willing to share his trains with her but made sure she got their names correct.

The real fun started when Luke’s cousin Ethan arrived.  Here they are having a light saber fight (Ethan is a Star Wars fanatic!).  Notice that “Luke” has the blue good guy light saber. 🙂

Luke and Zoey are catching their first glimpse of a Star Wars movie with Ethan.   They were both so spaced watching the movie.

I bribed Ethan to hug Luke… all it took was one cookie!  He should have held out for more.

There were six baby Longhorn born in time for Christmas.  They are so cute.

Luke really likes the new Buzz and Woody toys he got.  He insisted on hauling both of them around with him for a couple of days.  Now he is mostly taking Woody along… he’s much easier to carry.

Well, the chair is really comfy…

This is how I found Luke when I checked on him last night.  I put him back in his new big boy bed and he slept through the night.  This morning I asked him what happened and he said “I fall down”.   He fell off the bed during his nap yesterday afternoon also.  I guess he doesn’t get the concept of sleeping by the rails yet.  I do have to admit that that chair is super comfy though… I can sleep there with no problem!

Luke and Zoey

Jon took this picture of Luke and Zoey while they were playing in the back yard.  Zoey heard a loud noise and went into what we call “panic mode”.  When she is in panic mode she starts shaking and looses all good sense.  She will let Luke pick her up and hold her which is dangerous for her but makes for great pictures.  Poor Zoey!

Luke and Zoey

Some favorite shots from Luke’s 2-year photo shoot

We had a wonderful photographer named Jennifer Cota take Luke’s 2-year photos.  She really captured his personality and essence in very beautiful and artistic photos.  The photo shoot was so much fun… Jennifer is a doll to work with and Luke warmed up to her fast.  We went to the park by our house, down to a creek, he rode his bike, we visited the coy pond at the botanical gardens, and more.  We are just so pleased with the pictures and will treasure them forever.