27 Weeks, 6 Days

It has been 4 days now since the doctors found a mild amount of fluid in her abdomen, but Sophia continues to remain stable. There was no sign of increased fluid in her abdomen today and she scored 8/8 on her BioPhysical Profile. They saw practice breathing today which is great but not necessary at her age - way to go Sophie! The only news that made us a bit worried today was that her heart rate was at 38 beats/minute. Dr. Shanti told us that she did not want to see it in the 30's. We of course panicked but the OB that we met with today, Dr. Calvin, said it is not a big deal since her heart rate has been about 40-42 for the past few visits. We talked, again, about the importance of her staying with me as long as she can. Dr. Calvin said that everyday she stays there the better. He said she will go through a major growth spurt in the next month. In fact, she will double her size. He said that at 28 weeks most babies are 2 pounds and by 32 weeks they are 4 pounds. Obviously,  surgically, that is a very big deal.

Angie (my twin) came along today to our appointments. We thought that another set of ears at our appointment with the Heart Surgeon, Dr. Overman, might be helpful. During the ultra sound, Angie saw Sophia wiggling her fingers and stretching and kicking her arms and legs. Sophie also kept opening and closing her mouth and it totally looked like she was talking. I couldn't help but think she was saying "Hi" to her Parents and her Auntie. Or maybe she was saying "Hey, Aunt Angie, watch out! I'm going to be an even chattier girl than you!" (Hee Hee!)

We met with Dr. Overman after our OB appointment. Before walking into our appointment I thought about an email that I received from a mom who has a child with a complex heart defect and has had several open heart surgeries. She explained that meeting your child's surgeon for the first time is truly an amazing experience, and it was. When Dr. Overman walked into the room I could hardly speak. It is an absolutely overwhelming feeling to meet the person who you know will save your baby's life...

I am teary as I write this...mostly because we are SO exhausted. It has been a long few days knowing that we were going to be meeting with him this afternoon. I was so nervous because I was afraid that he was going to tell us different info or more negative statistics. I will leave the actual procedure information for Dan to write after me, but the few main points that he made were comforting. Dr. Overman said that he is not worried about the procedures from a surgical standpoint. He said they are all very common procedures and are "easy to do." Dr. Overman said that, if she is born otherwise healthy, he predicts a very, very successful outcome. He said that there are obviously several potential complications, but from a psychological standpoint for parents he said that it is best to think positively and to know she will do fine with her surgeries. He said that we should plan for Sophia to go to Kindergarten, have lots of friends and a family who loves her. And, rather than becoming an Olympic Runner, she may become an Champion Chess player! Dr. Overman and Dr.  Rios have similar philosophies. (Dr. Rios once told us that most of these babies end up being typically developing kids who ride bikes and kick their dogs!) They are just so positive! Obviously Dan and I are grounded enough and realistic enough to know that there is a very long list of things that could go wrong, but we are going to go with their advice and remain positive for our Baby Sophia.

Here is more technical info...I am off to bed :) Oh, and ps. Thanks Ang for coming. Angie was a good little note taker and took her job very seriously. One funny note is that Dr. Overman kept referring to a baby's weight in grams. Finally, after about the 10th "kilogram" Angie said "Um...so what would that be in pounds?" We all kind of laughed because we truly had no idea!

As Alli mentioned this has been a rather stressful week. We were beginning to think that once-a-week appointments was a lot, but now going 3 times in a week the anxiety and pre-appointment stress builds even faster.  I honestly feel that the way Sophia was moving around today (opening her mouth, kicking, etc) was her way of letting  us know that we do NOT need to worry about her and that she is doing ok.  I hope she plans on continuing this trend well into her twenties!

The meeting with Dr Overman was great.  Finally, some words from the man who will be operating on Sophia's heart.  I especially liked his remark that from a surgeon's standpoint, these are no big deal.  Confidence...I like it. 

We asked a lot of questions and received a lot of information. I am there were several times during our meeting when Alli and I had blank stares on our faces and were simply nodding in agreement. We basically went through the two scenarios of Sophia's arrival (an early arrival versus making it closer to term). He made it clear that surgically, the closer to term the better. If Sophia were to arrive in the next few weeks, they would intervene as needed. He said that they would most likely start with an external pacemaker but wait to do the first procedure to address the structural defects of her heart until she was bigger. This path would entail quite a stay at the hospital.

If Sophia comes closer to term, things may happen a little faster depending on how healthy she is.  This will also entail a pacemaker (external/temporary most likely) and one "first-stage" procedure to help with the structural defects.  Once Sophia grows to about 6-8 pounds, the external pacemaker can be disconnected and a permanent pacemaker will be implanted. Assuming all prior interventions have gone well, and the pacemaker is in, it looks like we could then go home for awhile.  Once 6-8 weeks rolls around, Sophia's next procedure will be the Glenn and then the final procedure will be the Fontan, which will be done when Sophia is about 2-3 years old.  

Dr. Overman told us that this experience is going to be an odyssey, and in so many ways he is right.  We really have no idea what will be in store for her as she grows older.  However, the way they treat this disease will also change in the next 10 years, and that is pretty exciting to think about.

We head back in to the OB Monday afternoon, so if you have some extra good vibrations, send them to Sophia, she needs a few more weeks with mom.

Love,

Alli, Dan  & Jack (and Ruf)