Tuesday, January 15, 2008

33 weeks...how am I already 33 weeks? Now I start the countdown to her coming rather than counting up to how far along I am. It's both exciting and scary. I have a motherly protection that makes me want to keep her in me where she's safe and whole. As soon as she is born that all ends. Some days are harder than others. I wish we had one issue to deal with. If there were no Turner Syndrome diagnosis, we'd be looking about about an 75% survival rate, a number that sounds great to me. We have no number to hang on or give us any idea what we're looking at. The closer I get, the harder it becomes for me. She is so alive inside me. Everytime I get an ultrasound the first thing the tech says is how active she is. "You've got a real active one here." It makes me both happy and sad. She is almost 4 pounds now, and I can see her face perfectly in the 3D ultrasound. She is perfect. She is measuring at about the 10th percentile mark, such a little perfect person. I hope that her high activity level inside me means she is a fighter.
Here is a definition of Hypoplastic Left Heart Syndrome for any who'd like more info on it, and links to sites with lots of info on HLHS and Turners since I didn't really explain them at all in my last post:

"Hypoplastic Left Heart Syndrome (HLHS) is one of the most complex cardiac defects seen in the newborn and remains probably the most challenging to manage of all congenital heart defects. It is one of a group of cardiac anomalies that can be grouped together under the description "single ventricle" defects.

In a child with Hypoplastic Left Heart Syndrome, all of the structures on the left side of the heart (the side which receives oxygen-rich blood from the lungs and pumps it out to the body) are severely underdeveloped.

The mitral and aortic valves are either completely "atretic" (closed), or they are very small. The left ventricle itself is tiny, and the first part of the aorta is very small, often only a few millimeters in diameter.

This results in a situation where the left side of the heart is completely unable to support the circulation needed by the body's organs, though the right side of the heart (the side that delivers blood to the lungs) is typically normally developed.

The right ventricle must then do a "double duty" of pumping blood both to the lungs (via the pulmonary artery) and out to the body (via a patent ductus arteriosus (PDA)). The patent ductus arteriosus, a normal structure in the fetus, is often the only pathway through which blood can reach the body from the heart. When the ductus arteriosus begins to close, as it typically does in the first days of life, the blood flow to the body will severely diminish resulting in dangerously low blood flow to vital organs and leading to shock. Without treatment, Hypoplastic Left Heart Syndrome is uniformly fatal, often within the first hours or days of life."


She'll have her first surgery right after birth, another at 4-6 months, and the last at 2-3 years old.
For now, there are really no new updates for us. Her heart is still very underdeveloped. My amniotic fluid has been measuring right around the 'getting too low' line, but I went in last Thursday and it was back up a little, which is very good. I am now going to the perinatalogist every Thursday and once I hit 36 weeks, I go twice a week. So fun. On top of those apts. I see the cardiologist every 2 weeks. It's a lot, but I can't complain. I am recieving great care and I am grateful that they are able to do all this preparing before she arrives. We go to the Cardiologist tomorrow to see to see her little raisin size heart again and see if there are any changes or not.
Tanner has been in brokerage school the last two weeks and has the rest of this week and to go. Poor guy...he goes to work at 6-2, then school from 2-10. I don't know how he does it. He's amazing. We thought it'd be better to get it over with before Bela comes though.. The days are long for both of us and we miss him, but it'll be over soon!!


Chelsea said...

You really are amazing, Ave. I'm so glad that you are posting updates so that we can learn more about what is going on with you guys. Good luck with the coming weeks. We sure love you!

Marianne said...

Avery you are such a strong person and everything will work out. We will be praying for you guys and good luck with it all. Keep us posted on what happens. If you need anything let me know also.

michele said...

Thank you for posting your blog on my blog. It is always comforting to find other families going through the same thing as we are. I can't believe we are expecting baby girls within a week of each other. Please email me if you ever want to chat, my email address is on my blog. You are dealing with much more than I am and I am so sorry for that. HLHS is enough let alone Turner Syndrome AND Atrial Septal Defect. Good luck with everything. I will be checking your blog often and praying everything will go as well as it can for your cute family.

Sally said...

You truly are such a strong, amazing person...you both are! We are her for ANYTHING you need. I'll see you tomorrow.

camillian said...

I really admire you a lot Avery. You're so strong. I can't imagine dealing with all of the "unknown". We always keep you, Tanner and Benson in prayers.

Lindsay Brummer said...

You guys are strong. We love you all and we pray for you often. If there is any help we can offer let us know.

us. said...

so good to have you back ave! i miss you so...you are incredible, keep up the blogging, I need to hear about your life! love you!

Brynn said...

Dear Avery,
We have a 8 month old little man with HLHS, we were prediagnosed too!!!! Alex just made it through the GLenn and came home from the hospital a week ago today...I would love to help out in anyway, Michele G. has been asking questions and we had someone to ask questions of too!!! If you want our blog is alexjeffreyhomer.blogspot.com I hope you are getting a little bit of sleep and we will start praying and thinking of your family... Brynn Homer

Maryblog said...

Avery I found you off Katie Sampsons blog...then to Callies and there you are! I can't believe you have a second child on the way. Congrats. Your little boy is so cute! Robbie and I are at rbandmb.blogspot.com I am glad I can stay updated...gotta love blogs!