Day After Surgery

Today was a much better day. We were moved mid morning out of PICU to the pediatric floor. Since we are out of ICU they unhooked most of his cords and it is so much easier to love on him and hold him. Thank goodness! Santiago was running a slight fever and his heart rate was a little too fast this morning due to mild dehydration so they put him on fluids through IV. His swelling is beginning to go down and he was awake for a good while this afternoon and into the evening. He is able to open his little eyes now - the left better than the right and it is so nice to see his eyes. The best part is that our almost unrecognizable little boy from yesterday is looking more like himself and is acting more and more like himself with every hour that passes and that is a big relief. I was able to nurse him for about 40 minutes this afternoon and not even an hour later he wanted more so we gave him a bottle with four ounces of breastmilk and he drank every bit of it. We were so proud! Something we are a little concerned about is that he weighs about 4 pounds more now than when he was admitted yesterday morning. He weighed 10 lbs 3 ounces when we arrived and now he weighs 13 lbs 15 ounces. They took him off his IV fluids tonight to see if that helps. He is retaining too much fluids and we need that to stop.

Earlier today the genetic counseling team from the hospital came to visit with us. Since my brother and sister also had craniosynostosis our doctor wanted us to talk with them to possibly do some genetic testing. They informed us that I most likely am a dominant carrier of the gene that causes craniosynostosis. We could do some bloodwork to determine this but I do not know if we will. If I am a dominant carrier for sure that means that with every child I have I have a 50% chance of having a child who has craniosynostosis. Same goes for my siblings and now for Santiago when he has children one day. I don't think we will be doing the testing because no matter what the results are Hector and I would not let that stop us from having more children in the future. This is a difficult surgery to go through but this condition is totally fixable and Santiago is going to be just fine after he recovers. My sister and brother are healthy adults living very happy lives and with God's grace Santiago will too.

Thank you again for all your thoughts and prayers. Keep them coming so Santiago will continue to recover quickly. Love you all!