Friday, March 30, 2012

Meeting our new Doctor

We had our first appointment with our OB today.  Because of the high-risk nature of the delivery we are now working the hospitals's maternal fetal medicine team.  After doing some research and asking around we picked Dr. Esplin. He was wonderful, and met our expectations perfectly.  Of course it is always going to be a subject that is difficult to confront, but we feel we have a great ally.

The appointment started out with an ultra-sound, so they could monitor the baby's growth and development.  The measurements show that the baby is a bit underdeveloped, but everything is still within range so this isn't alarming... phew!

After the ultra-sound tech did her magic Dr. Esplin joined us and consulted with us on our baby's future and the decisions that needed to be made. He didn't seem rushed, he let us ask all the questions we had, and was even happy when we pulled our our bulleted list of questions.

During our consultation with Dr. Esplin it became clear that although there are other babies with HLHS, every situation is different and unique.  We know we have a big decision to make, and it won't be easy!  Near the end of the appointment Dr. Esplin pulled the ultrasound wand from the machine and shared this precious picture with us:

This was the first 3-D ultrasound I'd ever seen.  And what a wonderful sight it was...  Looks so peaceful and relaxed.

As this pregnancy progresses we feel this little angel becoming more and more a part of our family.  Although it may not be under the most favorable circumstances, we are truly blessed to have this sweet child be part of our family.

Monday, March 26, 2012

Are You an Organ Donor?

People have been so kind this last week. Overwhelmingly compassionate. Thank you.

Right now we are coping pretty well, trying to keep life normal. We've been busy with a sick toddler (just a cold), insurance pre-authorizations, medical provider switches, buying a 2nd car (hate car shopping), filing taxes (we owe, bummer), and other such normal tasks...

Many of you have asked if there was anything you could do. Honestly, there isn't much for anyone to do besides wait and pray. Although, if you're game for something a bit out of the box, there is a small thing you could try...

I have thought a lot about how this baby will always need a heart transplant. Kind of ironic, considering my own path to becoming an organ donor: I used to be completely against it. Not that the arguments for or against it mattered much to me, really the whole thing just creeped me out. And now I am having a baby that may someday depend on an organ transplant.

Heart donors are rare. Child heart donors are even more rare, simply because, thankfully and wonderfully, most healthy children don't die.

But I think the questions are still important to ponder: Have you considered becoming an organ donor yourself? Have you considered organ donation for your children?

I hadn't thought of it at all for my own toddler, but I have this last week. I can't fathom how I'd live without her should anything that tragic happen. And yet, I have another child who may one day depend on another parent's consent in an awful situation.

There's no right or wrong answers to these extremely personal questions, but perhaps it's something you can think on and discuss with your spouse in the next few weeks. While your decisions probably won't have any effect on our situation, it's at least something you could do for us while we all wait.

Saturday, March 17, 2012

Fetal Echocardiogram

Friday, March 16, we drove to Primary Children's hospital for the Fetal Echocardiogram. I was way paranoid about getting there on time, so we arrived unexpectedly super early and had to wait an hour.

A Fetal Echocardiogram is an intense ultrasound--about 50 minutes long focused only on the baby's heart. The tech took still shots, videos, thermal blood flow maps, heart rates, measurements, etc. It was all very scientific and still just as blurry as any other ultrasound we've been too.

After the tech got all the shots, we moved to a consult room where the cardiologist met us to review the results. It was a really nice room--comfy couch, fluffy cushions, nice furniture--like a living room. It made me way too nervous and I was sure that nothing good could come of a conversation with a cardiologist in a room this "comforting". I was right.

Our baby has a very rare and life-threatening heart defect called Hypoplastic Left Heart Syndrome (HLHS). Without surgery it is fatal. Even with ideal treatment conditions, it is not a long life.

This does not appear to be a genetic defect. Something just went wrong in the early stages of pregnancy and would, in most cases, have ended in early miscarriage. There is no way we could have caused or prevented it. Since blood flow in a fetus is different than blood flow in a newborn, this baby will live easily to full-term. We will experience a "normal" pregnancy, labor, and delivery. At this point there is little anyone can do. Life for us will be pretty normal for the next 3 months, except for a few more doctor's appointments, a few more tests, and a lot of soul searching.

We have detailed some answers to more common questions in the side bar at the right. Please direct any of your questions there and we will post answers as we learn them. There are also some video explanations of the surgeries. We will continue to post more details and different aspects of this journey as we experience them.

Obviously this has been, and still is, a very raw and emotional time for us. We appreciate the struggle it is going to be for our families and friends as well. We have found great comfort in our faith. No matter what happens, it will be okay. Families are forever. We truly believe that. We pray for guidance, for strength and for comfort. Thank you for your prayers, love and understanding.

The Beginning

February 10th was our regularly scheduled fetal well-being ultrasound--the one where most people learn if they're having a boy or a girl. I was 19 weeks at the time, and since we didn't plan on finding out the gender, we down-played the whole thing. I'm not sure many of our friends or family members knew we were even having an ultrasound. That turned out to be an unexpected blessing.

It was a long appointment. The tech took a long time. The wait for the doctor took a long time. The doctor's scanning took a long time. And then Time did some funky shifting when she gently said, "I'm really sorry, but your baby has a heart defect."

It was hard to hear anything after that.

The doctor traded places with the genetic counselor and the intern. They did a full family medical history, gave us a basic description of the preliminary diagnosis, discussed the possible causes of the defect, and gave us a choice to terminate the pregnancy. After we declined that choice, they explained what needed to happen next: lots of patience.

No firm diagnosis could be given except by a pediatric cardiologist after a fetal echocardiogram test at Primary Children's hospital. None of this could happen until the baby and its heart grew bigger. We had 5 weeks to wait.

With no answers ourselves, we decided to put off telling family and friends until we knew more. I guess that's what brings us to today and the creation of this blog. It's time to fill everyone in on the details:

Our baby has a heart defect.