February 14, 2013

The Appointment with the Pediatric Cardiologist

(Written yesterday.)

We finally had our appointment with the pediatric cardiologist today. He may be the nicest man we have ever met in our entire lives. He looks like Albert Einstein (and I think just as smart) and is as kind as anyone could possibly be. From the moment he walked into the room and started talking with us, we felt right at ease.

We spent almost 2 1/2 hours at our appointment, about an hour of it having an echocardiogram done. This is an ultrasound that focuses on the heart - its structure, function, etc. 

After the echo he spent a long time explaining what he saw, what it means, what we can hope to expect; he went over in thorough detail the answers to our questions and everything else in between.

We are very encouraged, more so than we've been this whole time, particularly after doctors visits.

He said he's very confident it's not hypoplastic left heart. He said that while her heart condition is serious, it's less serious than hypoplastic left heart would be. 

He said that she has a single ventricle heart defect. She will still need open heart surgery within the first week of her life, a major surgery called the Norwood Procedure. She will also have a pacemaker installed which she'll always have. She will then have another surgery at 6 months of age called the Glenn Procedure. This is less major and has less of a recovery time. The third and final surgery happens between 3 and 5 years old, called the Fontan Procedure

He talked us through in depth of what a life with this condition looks like. He said that while she'll never have the full physical capabilities of other kids her age, she'll still be able to have a full life. At some point in her life she will need a heart transplant because single ventricle hearts have a limited life span, but that might not come until her 30s or 40s. 

So lots of information but we still feel so much more encouraged.

The most concerning thing that he emphasized is her low heart rate. He said that because of that there's a chance she may not make it through pregnancy. That's terrifying and probably our biggest prayer request right now. (I'll write a more concise list at the end.)

Her heart rate fluctuated between 65 and 75 today, which is still an improvement from the solid 60 it's been at the last appointments. He also said that the fluid is so minimal around her heart that it's not concerning to him at all. (Thank you, Lord, for more answered prayers.)

So an updated prayer list:

- Complete healing.

- Her heart rate to increase and stay at a high rate.

- For the Lord to sustain her life through the end of pregnancy, birth, and after.

- For skill and wisdom for the surgeons and these upcoming surgeries, particularly the first one.

One of the things I shared with some girls this week is a verse I pray for her from Psalm 21:4. King David writes, He asked life of you; you gave it to him, length of days forever and ever.

We ask for life for Baby Grace. Thank you for asking with us.

8 comments:

  1. Replies
    1. Appreciate it, Carly! By the way, I told Matt the other day that if you guys lived near us, I'm pretty sure we'd be BFFs. ;)

      Delete
  2. Praying for you and baby Grace. Love you guys! xoxo

    ReplyDelete
  3. Sara, you don't know me, but we have a ton of mutual friends :-) I came across your blog and have really enjoyed reading your writing. I've been thinking about you a lot and praying for your family. Was Bruce Hardy the doctor you saw? I know him from my old job, and he is so wonderful! I'm glad he put you at ease - he is so kind. Miss Grace is in very good hands. Thanks for letting me stalk you and your blog! :-)

    ReplyDelete
    Replies
    1. Hi Serena, I've seen your name quite a bit too on FB. Thank you so much for taking the time to write and definitely for praying! He is our dr., I'm a big fan. I'm a big blog stalker too, all stalkers welcome. :)

      Delete