08 July 2015

Trixie's Heart

In early June our unborn baby, Trixie*, was diagnosed with a heart defect. Basically, her pulmonary valve does not function properly. It is a very serious condition, but it is also very treatable and has a good prognosis. Within 24-48 hours after birth she will have a procedure done through her femoral artery to open up the heart valve. There is a slim chance this will be the only treatment she needs, but nobody is counting on that. At some point she will likely need the valve replaced. In some cases valve replacement can be done through the femoral artery, but traditional open heart surgery is more likely. We will know more about when this surgery is likely to take place after the initial procedure. Since replacement valves come from pigs, they do not last forever; they need to be replaced about every six years in children and every ten years in adults. We have great hope that (1) subsequent valve replacements can be done through the femoral artery, and (2) medical advances in her lifetime will improve and prevent her from having to have valve replacements so frequently.

That is the long and short of A Really Big Thing that I have been trying to figure out how to share with the Internet. Here are some FAQ's:

Does this change your delivery plans?
Yes! I was going to deliver at the local hospital with my family practitioner who also takes OB patients. Now I am seeing specialists and will deliver at the University of Utah. After delivery Trixie will be taken via skybridge over to Primary Children's Hospital where the cardiac team will manage her care. Since the two hospitals are connected I will be able to visit her without being discharged from the hospital. She will initially be in the hospital about two to three weeks. I will spend much of that time staying with extended family in Salt Lake City so I do not have to commute every day to the hospital.

Is there anything else wrong?
Nope. Everything else so far seems fine. While she is in utero she is as safe as can be. It's only after delivery that things become more risky. This is why I'll be scheduled for an induction. Neither my doctors nor the cardiac team want me to have a surprise delivery at home, in a car, or at some other hospital where she would then be ambulanced away from me to receive her cardiac care.

How are you holding up?
Really well, actually. There were a couple of weeks in between an ultrasound where they suspected something was wrong and my appointment when they were able to diagnose what it was. THOSE were not fun weeks. Now that we know what is going on, we are extremely grateful that it's treatable and we have a plan in place to take care of her.

That isn't to say that I am carefree about everything. The initial procedure is not something I am terribly worried about, but the prospect of open heart surgery on my infant or toddler can be totally overwhelming. I know open heart surgeries are routine (recall that my dad had triple bypass surgery the day Ike was born, and Eric and I each have a grandfather who had major bypass surgeries as well) but this strikes even closer to home. My worries and concerns lie more with the pain of such a major surgery and its associated recovery than with the technique and risks of the surgery itself. I have great confidence in the pediatric cardiology team at Primary Children's Hospital, but open heart surgery on a child is pretty serious business.

What can I do for you?
Right now, we have everything we need. After her arrival we will need help with childcare while I am spending my time at the hospital with her. We have excellent neighbors and ward members, and those who already know about the diagnosis have been beyond kind to extend offers of help. I am sure we will need help after her delivery, and we will ask for it. If you are the praying type, we welcome your prayers.

If you have any questions, please feel free to ask them! I keep a list of questions on my phone so I can ask the doctors, and many of those have been inspired by questions that people have asked me.

*For those who know me in real life and do not read my blog regularly, I use pseudonyms for my kids - Ike, Felix, and Trixie. The baby doesn't have a real-life name yet.


Liz said...

I am the praying type, so you've got my prayers. :) Sending lots of love and support.

Jana said...

Ooh, this is scary buuut I'm so glad you have some answers and a plan and good medical professionals on your side. Trixie is a lucky little girl to be coming to a home in which she'll be so well cared for!

Feisty Harriet said...

Oh wow, what an enormously emotional and complicated post! I'm so glad you have some good medical professionals on your team already and are comfortable with your plan. I'll be keeping your family in my prayers!