Tuesday, August 24, 2010

Lily's First Cardiology Appointment

This picture is like 5 weeks old.

Busy fetus day.

I had another ultrasound this morning and again, not much to report. Lily weighs about 3 lbs 3 oz when she should be closer to 4 lbs, if she were typical and all that. I told him Charlotte was only 6 lbs 5 oz and Ella was 8 lbs 4, so no big surprise, and he said he would be surprised if she gets as big as Boofus was. But then they also estimated Boof would be between 3 and 4 lbs so whatever, really.

Lily still has a good round head shape so we are excited to hopefully avoid crainiosynostosis surgery. We are also excited about it because Charlotte made huge strides immediately after her skull surgery which wasn't until 8 months. Maybe Lily can get a "head start" on her development if her brain isn't squished.

Oh yes, she already has a lot of hair. But that's totally typical for us.

So you may notice that through this post I have assumed Lily will be born alive and and live for awhile. It's hard not to make that assumption with how she looks on ultrasound, compared to Charlotte. I have tried to not make this assumption but at this point that's where I am. I don't want to get too hopeful, and here I want to be very clear that I am not thinking there is any chance Lily will be born with no issues and be one of those crazy miracles you read about. I will be so, so thrilled if she is as sweet and darling and wonderful as Charlotte...and I would consider it a huge miracle if she didn't require 24 hour a day oxygen. What an incredible blessing that would be.

Over the weekend we went to a SOFT (support organization for trisomy) BBQ and got to talk to Dr. Carey who is the world authority on Trisomy 13 and 18 and happens to live and work right here. There was a family from Uruguay at the picnic who had traveled across the world to meet him and talk about getting some treatment for their grandson with T13 who is nearly 2.

Anyway, he asked if we had done a fetal echocardiogram which we had previously refused actuallybecause we were taking such a wait and see, no heroic measures point of view. The thing about hanging out with these great trisomy families and docs is the attitude is so different. These kids actually have worth and deserve care which isn't what you find in a lot of medical communities....

So that got me thinking.

So Dr. Carey called me yesterday and asked about the echo, which I said I had been reconsidering, mostly to just "get in the system" and not have to do a lot of blind calling for appointments after she is born. So today he went and talked to cardiology who called me and set up an appointment for the echo today at 1:30. Sheesh! Never got into cardiology that quickly in the past.

I had a 45 minute scan which was rather uncomfortable what with the whole flat on my back, no blood to my brain aspect, and then the docs came in to tell us that really, they don't see anything abnormal. We won't know about the pulmonary hypertension until after she is born and her lungs inflate, but if she has the hypertension, we will treat immediately (with oxygen and meds) instead of waiting until she loses consciousness and is rushed to the ER via ambulance. Which may make a difference in how severe it becomes.

YIKES. Suddenly I'm making plans and assumptions I had promised not to, and as much as I know Lily won't be with us on earth forever, I'm think I'm going to have a rude awakening if she is born and something we haven't evaluated takes her immediately. So tomorrow I'm back to holding my heart close, just in case.


ANewKindOfPerfect said...

I can't imagine the emotions you are feeling, but it sounds like you have gotten good news lately! That's wonderful about her heart and her head shape. I hope Lily continues to be an amazing good news girl! :)

TMI Tara said...

I'm so grateful you have a support network and a specialist so close. You are wise to keep your emotions in check, but HOPE and FAITH will get you a long way as well. Thinking of you and sweet Lily and keeping you in my prayers!

Becky said...

What a tender post. Goodness. I too want to jump for joy at the good news but understand the guarded feelings. Either way, I can't WAIT to meet her. :)