Wednesday, April 29, 2009

In a Way, No News is Good News

I was in St. Pete at ACH on Monday for my second fetal echocardiogram on the baby. 2 and 1/2 hours later we finally got to leave the office. And just so noone is confused, that would be a 2 hour ultrasound by not one, not two but three different ultrasound tech (is that the right term since these people are so specialized and experts?) and two doctors. Kevin was amazed I did not fall asleep. One good thing about being a "special case" and having to see the top notch specialists is that the bed thingy you lay on for the ultrasound is an actual somewhat comfy, cushy bed.

The main doctor managing our case, Dr. H, told us that everything looks the same as 5 weeks ago. So all though my hopeful (but truly unreal) thought of things changing for the better was not the case we are not looking at any further issues or problems. Dr. H is still very confident that we are looking at Double Outlet Right Ventricle with Mitral Atresia and Pulmonary Stenosis (with completely functional and intact aorta and aortic arch). Quite the mouthful to say and understand. Here's a brief overview:

1. Double Outlet Right Ventricle - early in development the baby's heart experienced a surge (not exactly correct or technical medical term however, it is the way I understand it) causing the left side of the heart to overdevelop and then subsequently "die." The right ventricle then expanded and filled the space and function of both ventricles. Since the baby is still in utero and not breathing air, all the ducts are still open in the heart. This allows for the baby to not only receive blood through the heart but also from outside the heart. The placenta function helps move the blood to and through the lungs. Fortunately, the aorta and pulmonary vein both attached to the right side of the heart, hence the double outlet.

2. Mitral Atresia - since there is no left ventricle, there is no mitral valve.

3. Pulmonary Stenosis - the pulmonary vein responsible for carrying blood to the lungs is narrowed. Dr. H believes as the baby gets bigger in utero and then is born this vein will eventually narrow (or close completely) to the point of not allowing the blood to flow to the lungs. Because of the pulmonary stenosis the baby will have to undergo all three surgeries. I am still hoping the pulmonary vein will remain open and not narrow any further so we can avoid the first surgery. Each surgery is a risk and the first one, the "helper" surgery to place the shunt, is still opening the chest on a 1 week old infant, with anesthesia. I am not exactly looking forward to that.

All in all Dr. H thinks the baby will continue to grow just fine otherwise and be full term. In this case, a full term baby is very important. The bigger, stronger and healthier the baby, the better chance we have. He also saw no signs of heart failure which is also good news. We go back in 5 weeks for the next visit. We will get to meet the surgeon who will be performing all 3 surgeries and also see the hospitals...Bayfront for where I will be delivering and ACH for where the baby will stay. With another 2 hour ultrasound...sounds like fun, doesn't it?

One good thing that I am able to do is participate in a study that Dr. H is doing in conjunction with USF regarding babies with congenital heart defects. Lots of studies are being done now to determine if babies who are compromised in utero have brain injuries significant enough to cause developmental delays. Researchers and doctors are making a big push (at least it seems to me) to try and minimize as much as possible any damage to the brain due to lack of oxygenated blood (both in utero and during surgeries). The only negative I can see at this point by doing this study is that the ultrasound/echo will take 2 hours. Since most heart defects are not genetic the hope is that by understanding how babies develop with this the doctors can get some clues on how to try an prevent heart defects from happening...could be something as simple as a more advanced prenatal vitamin. Medical research is completely fascinating and I am truly grateful so much has already been done to this point.

Other than that all is well. The boys are still chugging right along. Kyle is getting ready to be done with school for the year, as of June 3. We got him signed up for some weekly camps at the Imaginarium (a very cool hands on science museum for kids). Todd is still the same. Both had interviews this week at St. Francis Catholic school where they will be starting in August. Been a very busy week for mama.


*pab said...

XO to you, XO to Kevin, xo to Kyle, xo to Todd and xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxoooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooooo to my baby niece.

Anonymous said...

Glad to get the update, Ash. You keep taking good care of you and we'll all keep praying!

Love you,

Aunt J

Keysgal@QuietWater said...

I am relieved that all was the same at this test. It would indeed have been nice to hear there was improvement but "no change" is the next best option. Our little girl has a great heritage of strong women so I know she will be a fighter in her own right. After all she is a Leo, the Lioness .....just like her Aunt J. Love to all of you.

Kristi said...

So glad that there are no new issues. We will continue to pray for your family. At least it's a girl - they are better fighters after being born!

karen said...

I am always a little more relaxed when dealing with health issues for which there is a diagnosis and a treatment plan - it's so much better than when a problem can't be identified or the doctors don't have a good idea for how to proceed. Plan or not, though, yours is a scary path and I'm keeping you guys in my prayers!

Kevin said...

Busy Mama indeed! I went up to St. Pete with her of course but then the very next day she took Todd all morning to St. Francis Interview (gives them an idea of class placement from what I understand) followed by an afternoon visit to her OB in Ft. Myers (1 1/2 with wait time). Then today she took Kyle all morning to his St. Francis interview. Tonight we had our Wednesday night meeting (Counselor). Thursday she has "off" but then Friday morning has another appointment ("hair doctor"!)