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Life with a boy and his Hypoplastic Left heart Syndrome, now Heart transplant and partial Liver from Aspergillius. Also, a girl and her Tethered Spinal Cord Syndrome, Neuro Endocrine Cell Hypoplasia, Lumbar Hemangioma, asymmetrical gluteal cleft, Pectus Carinatum and two Super Sisters and one yummy baby brother.

Wednesday, March 21, 2007

A little update.

Well, this week has been nuts around our house. Jeff and I made some financial changes and went on Monday to complete all of them. Yesterday we all went to the OB. The visits seem to be down to a science. After checking in we go back and check blood pressure and weight(my favorite part) then we wait for the doctor. I was really hoping Dr. Larkin would give us a delivery date. Based on what he had originally told us he wanted to deliver around 37-38 weeks, this meant I only had about three more weeks to feel uncomfortable, sleep deprived and anxious about the delivery. But.... he said more like 38 1/2 weeks. I was horribly disappointed, My sweet, patient husband, reminded me that the doctor knows the best time. We go back in two weeks and he will check me to see if there are changes "DOWN THERE". I seem to be measuring great and the heartbeat is so strong. Then later was New Beginnings with the YW for me, activity night with the YM for Jeff and a play date with Grandma for Ryleigh. Today, Jeff and I went back to PCMC (primary children's medical center) While Ry played with Papa. We had our last Echo. The view at this late stage of pregnancy is very hazy and shadowed because the bones of the baby have calcified (gotten hard) and he is squished but still very wiggly. After the echo we visited with Dr. Jason Su, the cardiologist. He has been amazing and it will be sad that he won't be as involved for a little while. He mostly asked if we had questions. We feel at this point, that we understand most of what will happen. He explained that Alex's heart is looking positive for the condition. The situation hasn't changed much. He was a bit curious because it looks as though the LV may not be growing anymore. The RV, is however, and doing very well. He also saw the PFO and it looks as though it is also doing well. So..... from his perspective everything is looking very HLHS, he said we will know a lot more after Alex is born and they can actually do an Echo on him vs. a fetal Echo that is done through me. After meeting with Dr. Su we met with a surgeon. Dr. Peter Kourtas. He or Dr Hopkins will be there for surgery. We just asked basic questions about what would make a good candidate for these surgeries and what would be some of the things to watch out for. It made me laugh most when he said "little kids are like walking third world countries and sometimes they collide to make everyone sick" We were talking about the worries after surgery and recovery. So far Alex is a good candidate and of course will have his challenges and such but things thus far seem good. Jeff and I talked about how that seems so weird to say. "Things look Good" obviously nothing about this is good, we mean, considering the situation and diagnosis, things are positive. Emotional wise, I am feeling very calm. We are all doing well. We are trying to manage everything we can before Alex gets here. I am even getting a new car. YEAH!!!!!! I have loved the Mazda, but Jeff and I feel a little more comfortable in something newer and I think he'll have less fear about me, since I will be driving back and forth from the hospital everyday. One nice thing; it seems like when the week starts it is over quickly. There is so much keeping us busy. So it won't be long now.

1 comment:

Angie said...

Hey Brynn:
I am so glad the echocardiogram came out the same! I have been thinking of you all week, and I have been praying things would come out in favor of Alex. I know he will have a rough start, I just pray he will have strength to get through his trials!
Prayers and Hugs!
Angie