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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.

Tuesday, February 20, 2007

Well, today was the big day. We went to our second visit at Primary children's. I have had such mixed emotions during this time. Mostly not knowing what to anticipate, plus trying to come to some kind of conclusion with Jeff on what we should do. I received a blessing from Jeff and Nate England(good family friend) last night and it was probably the only reason I got some sleep. We dropped Ry off at papa's house, our appointment was at 3:00 pm. They have you check in 1/2 hour early and do any paper work, and we were soon called into the ultrasound. They have this tiny room to lay in where they dim the lights and take so many pictures of the baby. It is so cool how they can see things so clearly. In my mind I wasn't praying that everything would somehow be miraculously better, all I wanted and was praying for was that they would be able to see things clearly. LoriAnn is the gal that always does the Echo and is very nice. She spent a good 35 minutes looking. Dr. Su was with another HLHS family and needed a little more time. So we spent 30 minutes waiting for him. It was totally fine. We talked and played games on our phone/PDA. LoriAnn even came in with chips and water for us. Then Dr. Su came in and looked things over again. We always go into this very nicely decorated room to talk. It has a comfy couch and is overall just a nice room. Dr. Su discussed all the things with us then. And.... Alex's condition hasn't really changed all that much. There are still things going on that are very wrong. But.... What Dr.Su did say, was that he was hoping a few things did not happen that didn't. He was concerned that the LV would work like a sack, holding on to stagnant blood or other fluids. This would increase the size of the LV and put pressure on his Right Ventricle. His RV needs to be working the very best it can, because the left isn't. SO it was good news to hear that the LV is still the same size and shape it was before and not doing any harm to the right side. This is really all that we "saw". Everything else remains as it was. We also met with the coordinator, Kelly Kelso, she acts as a liaison for us and the hospital. She took us on tour of the hospital. Now we will not be walking around, not knowing were to go. She took us up to the PICU, and we saw the most beautiful little boy. They show you what a heart patient looks like. He must have had 15 machines attached to him. They had closed his chest just yesterday. It was amazing. I had done very good up until then. But, as soon as I saw this little boy I started to cry. The nurse told us, when his mommy came to visit they wanted her to try really hard to not talk to him because his heart pressure would sky rocket, at 10 days old this little boy could recognize his mommy's voice and get so excited. We spent about 31/2 hours there today... After that we came home and went to mutual. So....... We are doing well, tired from the day, but really well. We go to the next appointment in 4 weeks. We will meet the surgeons then, take a tour of the U, have another Echo and hopefully be one our way to meeting Alex. Tomorrow I will be 30 weeks... just a few more to go.... Love you all, thanks for your prayers and support.

2 comments:

Jennifer said...

You know our thoughts and prayers are with you. We just love little Alex and all of you so much!

sstar said...

Beautiful Brynn. That makes me happy. It's getting so close! How nice - I bet you thought this pregnancy would go on forever. it will be so great to see him.