Sign up, and you'll be able to customize your font size and more! Sign up
Jun 1, 2021
9:55:30am
NewYorkCougar Playmaker
The Miracle of My Daughter, Part 4
Part One: https://www.cougarboard.com/board/message.html?id=26207094

Part Two: https://www.cougarboard.com/board/message.html?id=26213437

Part Three: https://www.cougarboard.com/board/message.html?id=26218593

1 in 100.

That’s how many kids are born with a heart defect. If you are born with it, it’s called ‘congenital,” hence the terms congenital heart defect or congenital heart disease (CHD). The two terms are often used interchangeably, although some will argue that a structural abnormality is a defect and not a disease. Others will argue that the defects cause symptoms that must be managed like a disease. I don’t have a preference.

The most common heart defect is a hole in the heart and many of those are either too small to worry about or close on their own. The rest require surgery via a catheter (no open heart surgery required) to repair.

About 1 in 4 kids with a heart defect require surgery. Most of them will require a single surgery — one and done — and have no memory of it.

Then there’s my daughter. She was diagnosed with Shone’s Complex. Also called Shone’s Disease or Shone’s Syndrome.

Shone’s is rare and consists of multiple problems affecting the left side of the heart. Only 1 in 167 kids born with a heart defect are diagnosed with Shone’s and no two Shone’s kids are exactly alike. This makes it tricky to accurately predict how well a Shone’s kid is going to do. These kids are medically complicated and each one is going to have a unique journey.

Oh, and I should note that you don’t fix Shone’s. It’s never going to go away. So the care you get is called palliative care, which seeks to provide relief from the symptoms or stress of a lifelong illness that cannot be cured.

Why not just get a heart transplant?

The question is innocent enough, and surely my wife and I wondered about that in the beginning (and many family and friends have asked about it). But what we learned is that a heart transplant is always the last option. Transplanted organs don’t last forever. The median life span of a transplanted heart is 12.5 years. Given the scarcity of donor hearts, how many chances do you think your child is going to get to find a suitable heart each time he or she needs it? And how many transplants can their body endure? What if the body rejects the donor heart? The immunosuppressant drugs one must take also come with significant life-long risks.

So there are many great reasons to keep the heart you were born with. And that meant more surgeries for our precious child.

We finished Part Three with me taking a new job in August. I flew out to company HQ to meet my new boss and participate in a department-wide activity - taking in a professional baseball game.

Both our kids picked up a nasty bug from a recent visit to Arizona. Turns out it was Mycoplasma Pneumonia. Both kids struggled and our son was briefly hospitalized. Our daughter also contracted a rhinovirus and her hospital stay would be longer.

Of course this happened while I was away on that trip. Thankfully it was only an overnight trip so I was back the next day and able to help juggle the craziness.

But here we were, back at PCH. Ugh.

I need to back up a bit and talk about our expectations after surgery #2 (to repair the aortic arch in February 2015). At the 6-week, post-op check up, we learned that our daughter’s aortic valve was not functioning as well as it was before the surgery. However, our cardiologist felt that our daughter could go years without having to have any intervention because of her valves. So of course we were expecting that surgery #2 would be the last one for a long time.

We were so naive. How naive? We decided to try for child #3.

Because our daughter’s heart is so complicated (that’s medical speak for: there’s a lot that could go wrong at any time), she gets regular echocardiograms (echos) that help diagnose how well her heart is or isn’t functioning. I believe these occurred initially every 6 weeks. After the aforementioned post-op checkup (March of 2015), we were given a 6-month pass until the next echo. That felt like an eternity, but our daughter seemed to be doing well, so we took this as another sign of stability (and hence felt it would be a good time to grow our family).

In December of 2015, we learned we’d be having child #3 in September 2016. We were thrilled!

Fast forward to February 2016 and two things happen: 1) an echo reveals that our daughter’s aortic valve has deteriorated to the point of needing surgical intervention, and 2) she gets sick with Human Metapneumovirus and is hospitalized for three days.

Because of the surprising results of the echo, her cardiologist wanted to schedule a sedated 3D MRI to get a better idea of what’s going on with her heart, specifically the aortic valve and what kind of repair will be possible. Because she had been sick they had to wait a mandatory 6 weeks before it was safe to sedate her, so this MRI didn’t happen until April. And yes, we stressed about the delay.

Quick PSA: A heart kid is better off not getting sick. There are potentially devastating consequences if a heart kid gets seriously ill. So please don’t be offended if we ask you not to visit when you are sick, or to take off your shoes when you visit our home. As the parents of a heart kid, we are doing our best and have to constantly balance the need to keep our child healthy with her (and the family’s) overall quality of life.

I’m going to again turn to something my wife wrote to explain the complexity of what was coming and the difficult decisions we were being asked to make:

“Based on those results (of the 3D MRI), we received the news that the surgeons here (Primary Children’s Hospital in Salt Lake City) did not think her valve is repairable and that she would, instead, be a candidate for a couple of other replacement procedures. Because of her age, there are basically no good options for valve replacement. She is so little, no matter what option we choose we have ugly consequences. Ugly = multiple OHS (open heart surgeries) in the future to replace valves as she grows or as they fail, or compromising the integrity of a third heart valve that as of right now is working great.

“We sought out a second opinion from another pediatric heart hospital (Boston Children’s Hospital), hoping that they would suggest an alternative that would feel more like the right thing to do. They came back offering the option of an experimental valve reconstruction using her own heart sack, the long-term consequences of which are unknown, or the Ross procedure, which had already been suggested.

“Bah. The other surgeries were so straightforward, the issues and the appropriate fixes were non-issues. Sure, we had concerns over the risks of open-heart surgery and the inevitable complications that arise during recovery, but overall, the process was smooth. I felt good about things. That is not the case this time. I don't feel good about anything.

“So far, those offering options available have not suggested one alternative over another, so that doesn't help. We are consulting with her local cardiologist on Friday to try to get some answers to questions and, hopefully, be able to make a decision so we can move forward.”

This uncertainty sucked. What if we make the wrong choice? What if we decide to go to Boston and she has complications and we get stuck in Boston for a long, drawn-out recovery...or decline?

After many consultations and discussions, we decided to try a repair of the aortic and mitral valves here at PCH. A surgery date was set for May 25, 2016.

My new boss was incredibly supportive through all of this and got a glimpse into how stressful and disruptive life can be with a heart kid. She told me she was working on something and to hang tight.

Turns out she had been working behind the scenes with our HR department and a few members of our company’s senior leadership to arrange for an extended paid leave. The leave was primarily going to be paternity leave since we were expecting in early September.

This was a gift. I’d end up having 6 months of paid leave to focus on my family. I’d also use this time to work with a trainer and drop a lot of weight and pack on some muscle. (I’d love to tell you I stuck with this...sigh...I did not.)

Remember when I wrote that it was a huge blessing I didn’t get a Director position when we moved back from England (end of Part One)? There was no way I’d be able to take this sort of time away were I a Director. Nor could I function well in such a visible role with all of this disruption. This is a great example of where what I thought I wanted (and was mad I didn’t get) would have been an awful burden. I could be gone for 6 months largely because I wasn’t a Director.

This time was a gift. And not being a Director was a gift.

We invited friends and family to participate in a special fast the weekend before our daughter’s third heart surgery. Friends from all over the world, some not of our faith, participated.

On May 25, 2016, my wife and I woke up early after a short and fitful night of rest. Add a generous dose of stress and anxiety to our fatigue, but also a great deal of hope, and this was our state as we drove our daughter to PCH (Primary Children’s Hospital) for a 7:00 a.m. check-in. We knew this was going to be a long day.

After checking in, filling out forms, answering a battery of questions, getting a pager, meeting with the surgeon to review the risks (including mortality rates) of the impending surgery and signing the consent forms for said surgery, we changed her into a purple hospital gown and she got an IV. We then met with the anesthesiologist around 8:00 a.m. He gave our daughter some drugs to help her relax and reduce anxiety. For the previous two surgeries, she was so small that we didn’t worry about how she was going to react to being handed off to strangers. In fact, she was asleep during the last two handoffs. But this time was different. She was much more aware and much more attached to mom and dad. And definitely not asleep. We didn’t want her last moments with us before she headed off to the OR to be stressful or frightening, hence the drugs.

One of the medical staff blew bubbles to entertain our little girl while the sedatives kicked in. She got a bit loopy, but was relaxed and frequently asked to be passed between mom and dad. It was closing in on 8:30 a.m. Almost time to say our goodbyes.

I was holding her and she took my face in her tiny hands and said she wanted to give me a kiss. She gave me three.

I didn’t want to let her go.

It was so innocent and sweet. And comforting. Once again, it was all I could do to not sob.

Time to go.

We walked with the anesthesiologist and an OR nurse down the hall to a big set of white, sterile doors. Those doors. We gave our little girl a kiss, told her we loved her and handed her off. Again. Fighting off tears, and failing miserably, we made our way down a level to the waiting room.

The waiting room has a staffed front desk that is also lined with several phones. A nurse from the OR calls every 60-90 minutes during the surgery to give waiting family members an update. If you have stepped out of the waiting room, the update will come via text on the pager. We checked in and out of the waiting room, mostly for meals or to go and wait in a more comfortable area.

We were initially told they were hoping to be done with surgery by 2:30 p.m. Given her history, we felt that was overly optimistic and, true to form, she proved us right. It took quite a while for the surgical team to cut through all of her existing scar tissue from past surgeries and get her on bypass. It was only once she was on bypass that the actual task of cutting into her heart to look at and hopefully repair the Aortic and Mitral valves could take place.

We watched as family after family came and then left the waiting room as their child’s surgery was completed. The crowd got smaller and smaller and we were still there. Finally, at 5:45 p.m., fifteen minutes before the waiting room closed, the surgeon found us and gave us the good news that all went according to plan and they were able to enlarge and repair (essentially rebuild) her Aortic and Mitral valves. At 6:30 p.m. we were able to go to the cardiac ICU and see our little fighter.

Once again, she had undergone a risky and taxing surgery, the riskiest and taxing one yet, to save her life. And once again, it worked.

Our daughter’s recovery was rough even though we were in the hospital for only 8 or 9 days. The sedatives they gave her right after surgery weren’t working so well. She may have developed a tolerance from past surgeries. The narcotics, however, shut down her intestines and she couldn’t keep anything down. You will see from some of the pictures how sick and tired she looks. She ended up losing about 10% of her body weight. Eventually, they got the right mix of the right medications and her gut woke up enough to start taking food and liquids, but her struggles were heartbreaking to watch.

This kid is tough.

We welcomed baby number three, a boy, in September, and enjoyed having this extra time together until I went back to work in January 2017.

Up to this point, we've averaged one hospital stay every 3.5 months with an average duration of 10 days each stay. Is it any wonder that my wife and I both felt like we’d been hit by a truck?

Perhaps 2017 would be our first year since our daughter’s birth without heart surgery.


3f075cebc1440d94ebe59f544feb3b96.jpeg
Enjoying a new litte brother.

ced4063be4fc0ac448558c3c7cccbb1e.jpeg
Sedatives post surgery weren't working too well.

b7af79df6e7a10dfa009b450f405f6d7.jpeg
The IJ line (internal jugular) seems so uncomfortable.

c57693c43354f7756aa814bccfd9f4e9.jpeg
Was awful watching her struggle like this. Here she is dehydrated and exhausted.

e12b8d5fac2a7ca458688de66807e56a.jpeg
She perked up once her gut woke up and she could take fluids and liquids.

c4ce154ced77b2cecef8ac207a1296c1.jpeg
This is a parent's sleeping room. When your kid is in the Cardiac ICU, there's no bed in there, only a chair. If you are lucky you get one of the limited sleeping rooms.

28c424fc01b8ad7c9dfe66a092674522.jpeg
Pic on the left is the day before surgery. On the right is after coming home. You can see the weight loss.

23b7c99aa5021f55565e3d0fd67cfc98.jpeg
So many scars. Her tiny body is covered in scars - her neck, her wrists, her chest, her thigh. They are both horrible and beautiful.

9cbb954c83f11ed76ab51a169713e069.jpeg
Playing with medical equipment is a regular activity in our home.

4ab28ed7bc46d9f85c288ec18e860f03.jpeg
Celebrating with ice cream one month post surgery!
This message has been modified
Originally posted on Jun 1, 2021 at 9:55:30am
Message modified by NewYorkCougar on Jun 1, 2021 at 10:01:08am
Message modified by NewYorkCougar on Jun 1, 2021 at 10:02:19am
NewYorkCougar
Bio page
NewYorkCougar
Joined
Jun 29, 2002
Last login
Mar 27, 2024
Total posts
2,262 (130 FO)
Related Threads Topic: Sitting in an ER exam room with my 7-year-old daughter. (NewYorkCougar, May 22, 2021 at 10:08pm)

Children:
The Miracle of My Daughter, Part 5 (NewYorkCougar, Jun 2, 2021 at 10:29am)

Other Related Threads:
The Miracle of My Daughter: Part 8 (The End...For Now) (NewYorkCougar, Jun 7, 2021 at 12:38pm)
The Miracle of My Daughter, Part 7 (NewYorkCougar, Jun 4, 2021 at 9:39am)
The Miracle of My Daughter, Part 6 (NewYorkCougar, Jun 3, 2021 at 12:38pm)
The Miracle of My Daughter, Part Three (NewYorkCougar, May 29, 2021 at 7:43pm)
The Miracle of My Daughter, Part Two (NewYorkCougar, May 28, 2021 at 2:24pm)
The Miracle of My Daughter, Part One (NewYorkCougar, May 27, 2021 at 12:59pm)
Messages
Author
Time

Posting on CougarBoard

In order to post, you will need to either sign up or log in.