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 lisamarietrent@gmail.com.

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:

Hello!

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.

-Andrew

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 http://hlhsbabies.blogspot.com/2012/06/q-as.html

Thursday, June 14, 2012

Q & A's

When explaining Jack's condition to people who find out or ask about it, I've sort of developed a script. It's so mechanical and rehearsed it almost comes out on cruise control. It usually starts with "He has hypoplastic left heart syndrome" and that alone, leaves people dumbfounded. I skip over the actual meaning of "hypoplastic" and immediately proceed to lamen's terms, "he has half a heart."

If people are actually interested in the details, they will ask which half- which leads me down the road less traveled, using big words like "aortic and mitral valve stenosis" to which some people actually are familiar with. I usually let out a sigh of relief in this case, because I know they really understand the gravity of the situation and I feel more connected to the conversation.

Unlike my other speech, which goes "His left ventricle didn't develop, so he had to have a few heart surgeries to re-plumb the one good side he DOES have." Typically, the next question is "Is he OK now?"

I have a heard time with that one, I feel like saying "UM, NO, he has a two-chambered heart with a bunch of gortex stuck around it and I go into his room every night to make sure he is still breathing after he falls asleep..."

But instead, I say "Well, for now... yes he is OK."

Then, the question that will probably haunt me for as long as I live comes next:

"So will he eventually have to have a transplant?"

Suddenly I'm taken out of my body and put into scrubs and I feel like a cardio thoracic surgeon sitting across from a very nervous set of parents asking if their heart baby will need a heart transplant. The truth is I don't know, I certainly HOPE not... but I suppose it is always a possibility. It never was on my list, heart mom's know the list.. "Deliver baby, Norwood, Glenn, Fontan, BREATH AGAIN." Transplant wasn't ever an expectation. But every time I get that question I am flung into reality with the fact that it could happen.

Something I hold onto was when Dr. Hawkins told me that the one side of the heart that Jack does have is a really good one; strong and healthy. I hold onto that with everything I've got and when I feel the heart beat through his broken chest I believe him, because I can feel it. But if I leave my hand there too long and feel the beat of his repaired heart I can easily become fearful.

How do you other heart mom's answer these questions? I know it's a part of your life, just like it is mine. We've become very good at delivering the stories that our little heroes have created. I'm interested in how you all feel about them.

Wednesday, May 9, 2012

To remove...or NOT to remove.. TONSILITIS!

Jack has had strep probably 10 times in his lifetime, and he has had plenty of ear infections to compliment the strep. I myself, have horribly huge tonsils that I've been told need to be removed. And my husband had his taken out as a child. Jack was basically cursed with the humongous tonsils that cause him such grief. However, the heart doc's do NOT want him going under the knife for any other reason unless it is life threatening. (Or they are just being territorial..either way we don't argue.)

Does anyone out there know of a heart baby that has had their tonsils out? How did it go? Was it scary, or risky? Did they worry about bleeding?

I'm just curious. I hope he grows out of this, but each winter it is expected that we will need heavy doses of Amoxicillin (400mg/5ml) to fight off strep and help his throat out.

Last time we were at the Doctor Jack did his best to act scared during the routine he is SO familiar with at the Doctor's office. (We are regulars there.) While the Doc was listening to him, Jack said "Can we hurry this along? I'm going to be late for school....)

Thursday, May 3, 2012

What did they do?

Often I am asked, "So what did they do to fix Jack's heart?"

I reply first, with "they didn't FIX his heart... they made modifications." If they were able to "fix" it, then life post Fontan would be much easier, not to mention sleeping... living and dreaming. Jack's heart is not fixed, it isn't complete, but it is sustained. A friend of mine has her baby in surgery right this very moment, receiving his Fontan. She posted this video to help explain the surgery to her family and friends. I agree with her when I say it is one of the best explanations. So if you want to know what's REALLY going on in there- watch this.