Sunday, July 22, 2007

Great news from the CathLab!

The Cardiac Catheterization on the 16th went better than good. Dr. Perry from Lucile Packard CH was the doctor preforming the procedure. The results showed that Orion's Right Ventricle(RV) had a great amount of growth between the last Cath/Operation and this one. It was enough for the team of doctors at LPCH to conclude that Orion's Glenn Operation should be canceled to see if the RV continues to grow. They decided to re-cath him in 4-6 months and check on the progress of his heart. The drawbacks to waiting on doing his Glenn is that the "BT Shunt" he has now bringing blood from his aorta to his pulmonary arteries can create a large amount of pressure on them and cause them to become weak. In the cath, the pressures in the PA looked good. If his heart continues to grow at the same rate, it is very possible that Orion will have a 2 ventricle system instead of the 1 1/2 that was planned.

Recap: Surgery canceled, cath results were great, Orion will be re-assesed in 4-6 months for what to do next.

Saturday, July 14, 2007

Third Surgery in a week

Its Saturday morning and the family's sleeping. Its hard to believe barely over a year ago we found out Orion was on the way. I still remember standing in the bathroom of the old Irvine apartment, looking at those surreal two stripes together with Tawny. Time flies so fast. These last few months have been a time for learning, about myself, my baby, and my wife. I learned what true sacrifice is, the feeling of worry that only a parent can feel, and to be strong when your loved ones need you to be the most.

The dates are set for the next operation: On Monday, July 16th, he goes in for a pre-op visit for the Cardiac Catheterization. Then on July 24th will be his third surgery (a bidirectional glenn), with a pre-op visit on the 23rd. They won't know exactly what they will do until the Cardiac Catheterization. Give us a call if you would like to come visit us in the hospital, we could always use food delivered to us.

We've spent the last two weeks just relaxing with Orion. His personality grows each day and he's growing and developing even faster than before. His hair has grown so long, it no longer stays up on its own. His cheeks are so fat, we have to clean his neck rolls twice a day. His arms are now semi-deliberately controlled, but while sleeping, they still have a mind of their own punching him and waking him up. He is talking—A LOT. (In Burmese culture this is normal for people born on Wednesday evenings) He talks to the computer, his best friends (the Mobile), chandeliers, ceiling lights, toys hanging from his crib, and our favorite, his parents. His new thing is blowing bubbles with his mouth and forming the "p" sound. He loves his thumb in his mouth and watches it as he puts it in his mouth very slowly. He grabs everything he can make his arms reach, his toys, his ears, his other hand. Tawny has had to strip herself of all her jewelry so Orion won't rip it off her. He has the cutest laugh when we tickle him in his belly. He has a little blue "first teddy" bear that he loves to hug, eat, and sleep with.

We are, to say the least, apprehensive about going into the hospital this time. Orion is developing exponentially, and all these new things have happened in the last stretch he's been home. The last time we were in the hospital—although it was a much shorter visit than the first time—it was much harder surgery on us as parents. We expect this time to be extra hard as we seem to miss him even when he's asleep in the crib near our bed. The fact that this surgery is planned seems to make it easier to prepare for mentally and physically, we will know for sure when the time comes. Orion has started solid foods (rice cereal) and it's supplement feeding for him twice a day. He seems to take it in pretty well. He is still learning to sit up on his own and has a new found love for sleeping in his crib. He pushes off with his legs very hard now, and he can hold his weight up standing up for a few seconds. Hopefully his path to solid food and sitting up doesn't get off track because of the next hospital visit. We can't wait for him to start siting up so we can start potty training him. Every stage is exciting, except for the surgeries.


NEW pictures are posted here


Orion and his Bear and trying to eat his hand:




Orion and his first "solid" meal: