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!!

Wednesday, January 9, 2008


Finally a new post...you've all probably stopped checking for updates by now. I've never been one to update too frequently, but lately I know I've been extra terrible at it. It’s weird and a little scary to me that it’s already 2008. I’ve looked forward to 2008 a little apprehensively because it undoudtedly will be full of life changing experiences for us. I'm 31 weeks along now with a baby girl that has been diagnosed with Hypoplastic Left Heart Syndrome, Atrial Septal Defect, and a chromosome abnormality called Turner Syndrome. We found all this out about 2 and a half months ago. It's sort of surreal to be told all that when you think everything is coming along just perfect. Surreal at first, then frightening. It's been a rollercoaster ride so far with lots more ride to come. I was first told I'd probably lose her soon after we found out (around 18 weeks) to being told now that she'll be born and have 3 open heart surgeries with a very unsure outcome. We're now playing the 'waiting game' to see what that outcome will be. We have tried to simplify this trial by placing things in the Lord's hands, knowing that is all we can do. We know she has a plan, and that that plan includes her being with us forever, if not for this short time on earth. I know that the hard parts are yet to come, but this has blessed us so far. Life has been very simplified for me latley to two things: the Gospel of Jesus Christ and my family. Everything else that I get caught up in is unimportant in the long run. I know I have a far way to go, but I'm grateful to have been able to learn some important 'life lessons' from all of this. I've had lots and lots of support and I'm grateful for good family and friends that have been there for us. Thank you! My plan is (hopefully) to use this blog to keep people updated on all this. We'll be spending some time in the hospital (St. Joe's in phoenix) and will hopefully keep updates on this blog for those inerested that we don't talk to all the time. I found a website of a little girl who had the same diagnosis as our little Bela and while parts were difficult to read and see, it was finally a light of hope for us to read her story and see her living today. Hopefully we can provide that to someone else going through something similar.
Other than that major update, we've been doing great. We had a wonderful Christmas in California and had fun spending time with family. We got to meet Charlie (Danny and Lauren's) for the first time and fell in love with him. It was easy to feel that heaven is close to us when Charlie was around. The weather was of course perfect and we spent Christmas Eve at the beach. I know that might be wierd to some of you, but that couldn't be any more perfect to me. :)
Benson continues to be such a good boy...he was a little naughty in California, but it must've been because his schedule was so off cuz he's been great ever since we got back. He's a complete homebody lately and NEVER wants to leave home. About 10 minutes into any outing he's asking for Benson's house. I guess I'm sorta a major homebody too, so he probably just gets it from me. He's a sweetheart and I'm lucky to have him.
My camera decided to quit working in the middle of November, so I don't have very recent pics, but Tanner got me a new camera for Christmas so I'll post some new ones later. A quick update in pictures of a couple events I never posted...Here's my superman for Halloween...

He turned two in November and loved every minute of the birthday celebrations. We took him to the train park in Scottsdale and chuckie cheeses..he still talks about his choo choo train birthday party.