Monday, June 24, 2013

June Doctor Appointments

Each month we visit two different doctors: a maternal fetal specialist and a pediatric cardiologist.  We had our two appointments last week.  Here's what we learned. 

Maternal Fetal Specialist

He is basically a high risk OB.  I went to this appointment with my mom so Jeff wouldn't have to take time off work, but I needed someone there in case something was not normal.  At the appointment they did an ultrasound (if you are counting, that would be #7 this pregnancy) to make sure the baby is growing normally.  Afterwards we talked to the doctor and asked a few questions.  To be honest, we really aren't impressed with this doctor.  I'm really not sure he knows much about HLHS.  Some of the things he's said are not really true and we kind of get the impression that he really thinks we should terminate the pregnancy.  He never actually asks us what we want to do, but he says things like, "and then we need to decide what you guys want to do... how far you want to try and go with this.". He kind of just has a "gloom and doom" kind of attitude about it.  I don't think we will be seeing him again.  I have to switch over to Jeff's insurance this month because I lose mine since I'm not going back to teaching.  We'll see what next month brings.  We did learn that the baby is growing normally (yay!) and he said that there isn't any reason to induce labor early, so I will probably deliver around my actual due date.  The hospital situation is still up in the air due to the switch in insurance. 

Pediatric Cardiologist

We LOVE him!  If you ever find yourself in need of a pediatric cardiologist (and I hope you never do), let me know.  I can recommend the best one to you.  He just has the best attitude about everything.  He makes us feel like, "It's okay.  We've done this before.  You don't need to worry about things."  Not that we know everything will turn out the way we want, but worrying about things that we can't control is useless.  We'll deal with the complications when they come, but for now things look okay.  

The technician did another fetal echocardiogram (basically a fancier ultrasound, so #8).  As she was looking at the baby we were asking her a few questions about TAPVR and Heterotaxy, but she had to stop us because she said she didn't know about all that.  She was impressed with the knowledge that Jeff and I have gained already about this.  That reassured us that we are on the right track with what we have learned so far.  

After the echo, we met with our cardiologist.  He sat down and answered every single question we had.  Some of the things we talked about were:
-The baby's anatomy looks the same, which is good.  I was really worried that another complication was going to pop up.
-The TAPVR is probably unobstructed, but they are going to keep watching it.  These are the veins that go from his lungs to his heart.  They are not connected in the right place, so eventually they will need to be fixed.  They are measuring the pressure (isn't that crazy... that they can measure the pressure of the veins in utero?!) to see if it goes up or down before he is born.  That will determine when they will need to address these veins.  
-Our baby does not have Heterotaxy.  We've heard that Heterotaxy is a common complication with the diagnosis our baby has.  That is where all of his internal organs are jumbled up and not positioned correctly.  The technician said it's kind of like a chain reaction, when one thing goes wrong, more things follow.  But the cardiologist told us that he sees the liver, stomach, etc. in the correct positions, so yay!
-We have narrowed our hospital options down to two.  
     *Hospital #1 - located downtown (45-60 min. away from  home), heart surgeon has worked there for 30+ years and is very good, has good accommodations for me and for the baby
     *Hospital #2 - located about 4 miles away (10 min. from home), is an academic hospital so we would be working with a lot of residents which may add frustration to an already high-stress situation, has ok accommodations for me and great for the baby, this pediatric cardiology unit is ranked #12 in the nation
Obviously there are pros and cons to both.  We've been assured that either place we go will have the same outcome for our baby.  The 2nd hospital is actually a Primary Children's hospital, but they have added on a section where women can deliver babies there.  We've been warned though, that if there was some sort of complication with delivery, there are only pediatricians there to assist.  Our doctor said that 99% of the time it is fine, but he worries about the 1% of the time when it's not.  
Next month, in conjunction with our cardiology appointment we will visit each hospital, meet the surgeons, and tour the facilities.  I hope that helps us make our decision.  
-We also asked our cardiologist about this case study at the Mayo Clinic.  He actually did his residency there and said it is an amazing hospital.  But he also said that he needed more information about this particular study before he would recommend it to us.  He said that one of his reservations about it is that it would be very difficult to determine if it is effective.  Some HLHS babies have very strong heart beats, and others have weaker heart beats.  He wants to know more about how they would actually measure if the stem cells did any good, or not.  He doesn't want us to do it just to do it.  He said that there isn't really any added risk, but his gut feeling is that it probably won't do any good.  He has emailed the hospital to get more information and we'll talk about it more once he hears back from them.  
-We also discussed more about the "inter-stage" between the baby's first and second surgeries (when the baby is 0-6 months old).  This is the most fragile time for HLHS babies and we've heard lots of information about how to keep the baby healthy during this time.  Our doctor is a member of the same church as us, so he confirmed that we should not be taking him to church during this time or any other public place.  Since he will probably be coming home from the hospital right when flu season starts he will need monthly injections to protect him from RSV.  I forget what he called them, but basically it's like a monthly flu shot, but it costs $3000!!  Good thing we have insurance that will pay for it!

I think that is everything.  Probably pretty boring for most of you, but I wanted to write it all down before I forgot what we talked about.  I'll update more after we visit the hospitals on July 22.

7 comments:

  1. It's not boring at all, Laura! Thanks for being open with all this information so we can keep you, Jeff, and little man Kirk in our prayers. You guys are awesome!

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  2. Wow. You got a lot of great information at your appointments! I hope you can find another perinatologist that you feel more comfortable with. Insurance issues are the worst! I am delighted for you that his TAPVR is unobstructed. That is truly wonderful news, and it is possible that the placement of the pulmonary veins will not need further operations. Grant's were left as is, and they just had to adapt and work around them making for an easier Glenn and a slightly more difficult Fontan. Fingers crossed for less complications!! I am really curious to hear what your cardiologist thinks about the Mayo's research study.... if anything, if they will pay for your travel and for the surgery, it might be worth it just to have the reduced bills and have free cord blood banking in case those stem cells are useful down the road with all of their research! As for keeping him home, that is most definitely safe and wise. I hope that your family and friends can support and understand just how fragile he is during that time period. Synagis shots (which help the body to fight the affects of RSV) are SO PRICEY and though they are worth every penny, it is tough to be home so much. Thanks for all of these details. You have been on my mind and we are praying for your family and your sweet little heart hero.

    Hugs!

    Alli

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  3. Have you thought about what you're going to do while you're at home? (Besides taking care of a brand-new baby, of course!) Will you have extra time or will you be pretty busy with machines and weighing, etc.?

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    1. I have no idea! I've never done this before, so I have no idea what life will be like. I don't want to set huge expectations that I won't be able to reach. Any ideas?
      As far as machines, the only thing we've been told is that we will be weighing him regularly and checking oxygen levels regularly. I don't think that will take too much of our time. Plus meds, probably frequently throughout the day.

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    2. Hi Laura,

      I found this blog from Facebook and as I've been reading your journey, my heart is breaking for you and Jeff. But, I just want to tell you that you guys are AMAZING. I'm in awe with how you are handling all this. This baby was obviously sent to you guys for a reason. We will keep you and Jeff and your sweet little one in our prayers. And please, please let me know if there is absolutely anything I can do to help. I'm actually in the area (Longmont). We wish you the best with everything! -- Emily

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  4. Laura, (this is Chrissy) I just wanted to wish you, Jeff and baby boy the best in these first few stages of his life. I work in a cath lab where I help with pediatric cases, too, (I'm sure your baby will visit one at some point in time) so I have a little knowledge of what your baby has and what he might go through. It's always been hard to imagine what it's like being on the parent side of things but you are going to be awesome. Your son is very blessed to come to you two. Hang in there, life will eventually get more stable :)

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    1. Thanks Chrissy. It's so good to hear things from all different perspectives. Thank you!

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