Saturday, August 8, 2015

2015 Update: Single Ventricle Survivorship Clinic, New Pediatrician, and 4th Grade!

I realize that people read this blog and learn about Jack's history- but wonder about how he is doing now. I myself am always thinking about those HLHS'ers that are living lives as teenagers and adults and get curious about their lifestyles, limitations and abilities. So here's an update on our little Jack.

Jack is currently 9 years old, and getting ready for the 4th grade. He is very active, never naps- and is constantly moving. I'm always surprised at how much energy he has. He wears me out. This summer I have been taking Jack on hikes with me. We live at a relatively high elevation as it is, so getting up in the mountains should be taxing on Jack, but he does so well. I'm so proud of him for pushing along and making it to the destination of each hike.

Last weekend we did Timpanogos. The hike to the caves is a perpetual incline and a mile and a half long. You gain 1092ft in elevation and finish at 6,400ft. Jack did GREAT. We only a rested a few times and he felt great when he got to the top. Not to mention the caves. He couldn't stop talking to the guide and was basically jumping up and down during the whole tour.

 Another huge event was our first visit to the Single Ventricle Survivorship Clinic at Primary Children's. They have started a clinic specifically for single ventricle kids to study how the Fontan affects the rest of the organs long term. So before our visit we had a number of tests.

1. DXA Scan, where they scan his body to view his skeleton and the "age" of his bones.
2. Stool sample... fun
3. Blood draw... ALWAYS a treat
4. Wrist X-Ray
5. Liver ultrasound
6. Exercise test
7. Lung test

After completing these test we meet at the clinic with the Liver Team, the Endocrinology Team and the Heart Team. Here is what we learned from each:

Liver Team: Jack's liver is experiencing some expected back flow of blood. (As most fontan patients do.) This backed up blood causes the liver to create scar tissue, the scar tissue can change the shape and texture of the liver, it can cause nodules which could turn into tumors on the liver. This is something they watch for with all fontan patients. Jack's isn't severe, but it is the very mild, beginning stages of liver disease.

Endocrinology Team: Jack is growing just fine. He is skinny, but Josh and I aren't huge humans either. His development is normal. The Dr. recommended he get extra calcium and Vitamin D. She didn't endorse SUN bathing, but told me that a healthy dose of sun each day is good. We started Jack on one TUMS a day for calcium, because he doesn't drink a lot of milk. This is prime bone building time, so we want to take care.

Heart Team: The heart team informed us that Jack's lungs are not expanding all the way, thus limiting his endurance. They recommended he get some good aerobic exercise and controlled breathing practice to help strengthen his lungs. We have enrolled him in swimming lessons. The deep breathing involved with swimming will be beneficial. I worried about pushing Jack to hard and Dr. Menon said "you can't break him.. he's not going to have a heart attack... these muscles are meant to be exercised." So I felt better after he said that. Also, Jack's fenestration never closed after his fontan. Dr. Menon said it might help him if we closed it. Jack freaked out a little. We explained it is just a cath, and not a surgery. It's very evident that he is much more present at Dr. appointments that he used to be. We will leave it up to Dr. Su, Jack's cardiologist, to whether or not we will proceed with closing the fenestration. Then Dr. Menon explained that it wouldn't be a BAD idea to have a formal evaluation for ADHD. Jack for SURE has a short attention span and can't hold still or be quiet for very long. I don't want to hurry and get him on meds, but learning about mood and behavior will certainly help in that department. They said that lots of kids that have spent time on bypass struggle with attention disorders. Lastly, Jack's Hepatitis B vaccine didn't stick, so we need to do that again. Apparently that has been happening with these kids. Weird.

So we have started pushing Jack a little harder, encouraging him to go further even when he is a littler tired. It's nice to see that he CAN do it, and he DOESN'T collapse. He is very capable and it gives me comfort to think that we are making his organs stronger and helping him sustain.

These kids are incredible. I love hearing about them progressing and growing. I would love to hear from any of you who are further along in life with HLHS'ers, whether it be the readers or children of the readers... I would love to hear from you. Thank you all for reading and staying in touch during this life-long journey of a boy with Hypoplastic Left Heart Syndrome.

Tuesday, October 7, 2014

Doing well-

I know how comforting it is for parents to see other parents going through the same trials, but in the same respect, it is comforting to see those who came out of those trials WELL and are doing great!

I thought I would share a little about what Jack is up to, and how his condition affects him today.

Jack is in the 3rd grade. He will be turning 9 this December. (WHAT?!) He is extremely creative and is ALWAYS doing something. Is current love is Batman. He has a sweatshirt that looks like a bat cape and mask and has been wearing it everyday..

He also loves making things. With his love of Batman he has turned his room into a bat cave. Cutting black bats out, gluing googly eyes on them and hanging them upside down above his bed. He builds with Legos. Creating his own ships, cars, buildings and creatures. He can write books; his 2nd grade teacher showed me a book he wrote about "drugs".... and how there are "good drugs" and "bad drugs," siting "Aspirin" as a good drug.

Jack goes to Theater Camp. We tried soccer but the hot afternoons and running didn't suit him.. he enjoyed it, but couldn't always keep up. He loves to be on stage and get attention so theater was a wonderful choice. They are doing "Frozen" this season. He also attends Scouts. They have a mile long bike ride this wednesday that he is nervous about- but I'm sure he will do fine.

Last week as I picked him up from school he asked "Mom, will I need a heart transplant?" I had never prepared myself for that question. Probably, because I don't know the answer. I asked him why he was wondering. He told me someone in his class explained how her cousin had a heart transplant and has been in the hospital for months and months. He was more worried about being stuck in the hospital, than the actual transplant itself. I explained to him that his doctors haven't once mentioned a transplant, but perhaps one day he may need one. I could tell it made him nervous so I told him it wouldn't be till he was much older.

I forget sometimes how aware he is about his situation, and how he is getting older and smarter and can actually process what is going on inside his body.

He so tough, brave and incredibly active. I can't imagine what he'd be like if he was at full capacity. He would probably be levitating.

I hope you all look at your heart babies and see the miracle inside of them. I feel so lucky to be in a place where he received the care that he did.

Prayers and love to you and yours,


Monday, January 6, 2014

New Years Treat

So, December 31, 2013. Jack decided he was very sick. I took him to our Pediatrician and his blood pressure was waaaay up and sats down. It wasn't pneumonia, but they felt he needed to be admitted. So over to Primary's we went. Jack was diagnosed with the "metaneumovirus" which is a super nasty cousin of bronchitis.

It took lots of oxygen to keep him at 90. The Doc's wanted him to be at 90 on room air in order for him to go home. It took ONE WEEK, and me tampering with the oxygen tanks at night, and my Ped and Cardiologist to get us out of there. We let it run its course and at this point the bills were racking up. He healed- but it took a lot of time. I bought a pulse oximeter so I could watch his sats at home. It's a blessing... and a curse. But having an 8 year old in the hospital is SOOO different that it was when he was 3. He's demanding, whiny, rude, fidgety, sassy.... It was very difficult. He would say I don't care about him and cry and I would explain that I was there for him and nothing else. It was really difficult. It sort of made me grateful that we have the OHS's before the kids get attitudes and learn how to take advantage of parents.

Anyway- I'm of course grateful he is healthy and made it through unscathed. It was a huge wake-up call that just because the 3 surgeries are done, that doesn't mean life will be peaches and cream from then on. Our heart warriors are fragile and will always need extra care. I love him and hated watching him feel so crummy. Thank heavens we live so close to Primary's and have such attentive Doctors.

Sunday, July 7, 2013

Up and Coming

In effort to spread awareness and help those families and organizations involved with CHD's, we've started up an Etsy Shop selling jewelry that will help celebrate our heart heroes and our heart mom's. This is a sneak preview, as the shop has not officially been advertised as "open" but here is a sample of the kind of stuff we will be making and selling. $1.00 from each sale will be donated privately to Intermountain Healing Hearts, a support group for families affect by CHD's. Thanks to those who've inspired me, motivated me, and kept me sane during our long, continuous journey with Hypoplastic Left Heart Syndrome.

These tokens commemorate surgery dates, birth dates or any date that is special. They are wonderful reminders of how lucky we are to be influenced by such strong people. Mine holds the dates of each of Jack's open heart surgeries.

This bracelet is $18 + shipping. I can do names instead of dates, as well.
To Purchase a bracelet please email me at

Wednesday, December 19, 2012

A Positive Look to the Future

Many of us heart parents are living each day with the "unknown." It's as though after the Fontan, it's all uncharted territory we are faced with, being that this whole procedure IS quite young. When explaining Jack's prognosis to people I usually finish with "The oldest person with this heart condition that has had the same surgeries as Jack is about 30... so we don't know a whole lot past that."

But most of us only hear about the babies. The most crucial time of their lives are those first years to get through the three stages and come out the other side able to sustain themselves. Then, and for good reason- we don't hear too much about them. Because they are living NORMAL lives and there aren't as many stories to report or updates to keep.... which is GOOD... we all know that when things go quiet online from heart families it usually means life is too normal to focus on CHD's and their constant quirks.

I received an email from a very generous and compassionate young man, who is 23 with Hypoplastic Left Heart Syndrome. He came across my blog and identified enough with me that he KNEW I would appreciate a note from him telling me that he is doing GREAT and has been since his Norwood Procedure. I asked him if I might share his email on my blog to spread the comfort he gave me, with other heart families out there, and he sweetly complied:


My name is Andrew, and I found your blog, hlhsbabies and I wanted to just sent you a quick note. I'm 23, and I was born with HLHS. I'm doing amazingly well too! I had the Norwood, Glenn, and a Fontan. Dr. Norwood actually did my surgeries back in the late 80s/early 90s. 

I occasionally checkout the blogosphere for people talking about HLHS and sometimes reach out to families who may have younger children who are in my position. I just want to spread some good news, and give families like mine hope- because I know for my parents there wasn't much. 

I want to let people know that there is a future for children who were born with HLHS. For example, I'm almost done with university, I have a great job lined up, I exercise regularly, etc. I'm just about as normal as can be. While it might be a pain in the neck sometimes to need to check in with a few doctors once or twice a year- it's not that bad really. 

So, let your kid know that he's not that different- and he can do whatever he wants. HLHS is something he'll have for the rest of his life- but he doesn't need to give up his life because of it.


I don't know about the rest of you, but when I hear from the older HLHS's kids/adults I am so comforted to know that Jack DOES have a future ahead of him and I can sleep well knowing there are many others out there coping with the same thing. Thank you Andrew, we WILL be keeping in touch!

Tuesday, December 11, 2012

The Annual Once-Over.

It's amazing to think that we only go to Cardiology once a year. It feels as though only a few months in between visits. Jack has no qualms about going to Primary's, he loves it there. Which makes it a much more pleasant experience than the dentist....

We started off in Labs, because I wanted to get the worst part over with first. Jack new he'd be having his blood drawn but to steady his nerves he'd say in a scared, broken voice "I don't think it will be that bad..." It wasn't, however he hyperventilated a bit and he has bad veins anyway that only a tiny bit of blood came out. They said they'd send it to the lab and hope it was enough, but deep down, I knew we'd be back.

From there we went to Radiology and Jack is a pro at Chest x-ray's. What a pro he is at those. The technician said "Goodness, you know just what to do!" and Jack replied "...I've done this a couple times."

After Jack reviewed his clear image on the x-ray, we went to wait for our echo. I love echoes... I always have. When we were first brought to Primary's while I was pregnant I had a fetal echo. It was warm, quiet and peaceful in the echo lab and I got to watch my baby's heart beat. It's still the same today..

Jack watched "Bolt" during the echo and made it through to the END of the movie because we had to change machines 45 minutes through to get 3D images. It was wild to see them move his heart around on the screen so I could see it from whichever angle. They showed me the "money shot" of his fontan, working hard and well to keep blood flowing to this lower body.

Before the final echo was complete I got a call saying we had to go back to the lab for more blood. Not a surprise, but also not something Jack wants to hear. When I told him he about had a mental breakdown on the echo table and I reassured him that he'd get ANOTHER prize, and he made it out just fine the first time, he could do it again. He did great- but wanted to take his blood home....

Then we finally made it to Clinic, for the final tests... blood pressure, Pulse Ox and the EKG. Jack is comfortable with all of those and had great readings. His oxygen topped out at 92%. Then the Dr. came in. We are always happy to see Dr. Su. He was the doctor that sat down with me when I was 20 weeks along to describe to me the condition of my unborn baby. I trust him, I agree with his diagnosis and he is ALWAYS available to answer my questions. Jack was happy to tell him all about what he has done in the last year, including when he fell to his hands and knees on the soccer field this summer. Dr. Su told Jack to listen to his body and rest when his body wants to rest. We decided Kung Fu is a much better hobby for Jack to pursue. The results of ALL of Jack's tests left Dr. Su very happy with where we are. We talked about my recent concern about a transplant. He told me there is no reason to prepare for that. "We are still in Plan A, which was to do the three surgeries and see how well he does with them. A transplant is the 'back-up' plan, Plan B, and we haven't gotten there yet.

It's always comforting to know that Jack is doing well and that his heart has handled everything that has be thrown at it. As Jack Kung Fu-ed all over the room Dr. Su said "It's pretty amazing."

I feel the same way. Relief has settled in and we can sit back and enjoy the year ahead.

Sunday, November 25, 2012

Medical Maintenance

(Jack, at Primary Children's Medical Center.
Left is 2009 while admitted, right is 2012 during a dentist appt.)

I get asked about how different life is now that Jack has had his final surgery and what kind of "maintenance" we have to keep now that he is "finished*," and what differences there are as opposed to a heart healthy child his age. Obviously, I have nothing to compare him to. However, I do know when we have stepped over the bounds of "usual treatment."

For example, last year I was pulled aside by a very kind dentist, one who worked at a pediatric dental office and he had the courtesy (and candor) to set me straight.

"I believe I am perfectly capable of fitting him with a crown and filling his cavities, but I must tell you I would feel more comfortable if he were in a setting where if the small chance anything were to go wrong, he would have the appropriate people and equipment around him to fulfill his needs. I'm quite certain you will find this is the case at most dentist's clinics.. "

What he was saying so delicately, was that no one wanted to touch a boy with such a delicate heart condition. If they were to use ANY anesthesia and something were to happen, they would rush him off to Primary's anyway- hence, we should just go to their dental clinic. 

I completely agree, of course, but a regular visit to their clinic is $250. Thank heavens for Medicaid..

But they are absolutely wonderful there. The first time Jack went he walked out of the office with a silver crown and was convinced they never shot him with novacaine. They are quick, make the patient comfortable and have a way with their hands to hide most things going into the child's mouth. Not to mention the nitrous. Jack giggles the whole time in the chair. The major differences are that you are in a hospital, there is MORE equipment around you, and you are prescribed an antibiotic to take before your appointment to avoid infection. I'll take it.

Another form of maintenance that heart healthy children don't have to deal with is the aspirin. Jack takes 80mg every day to keep his blood thin and flowing freely through his complex anatomy in and outside of his heart. This makes for tricky clotting when he bleeds. There was the circumcision incident that I feel I would need his permission to tell on the world wide web, also when his baby teeth came out I had to pack some cotton in there for a bit before it finally stopped. Then there was the concussion that really got everyone concerned. Jack slipped on ice and hit his head at school. The concussion left him very bruised and he had some vomiting. So the hospital opted for him to have a CT to check for any bleed, because getting brain bleeds to stop while on aspirin can prove very difficult. 

The test showed what they expected for a minor concussion, but no bleeds. I felt like fitting him for a permanent helmet and sending him back into the big, dangerous world, where his head must NEVER be touched and he can't EVER go to recess... or play dodge ball, or run....

But I supposed every parent, (heart healthy children or not,) must deal with the reality of having to send their children out into the world and risk what may happen to them. And this is only the beginning. So many heart mom's have their kids in sports or driving...or sent off to college. I'll probably be calling Jack every night for the rest of his adult life reminding him to take his aspirin.

Like Elizabeth Stone says, "Having a child is momentous. It is to decide forever to have your heart go walking outside your body."

* I like to think we are finished, but as you read the previous post, that isn't necessarily the case. See