It is a cloudy start to this holiday weekend here in Baltimore. It has felt a bit cloudy this week in our world since Tuesday as we started to find out that Sophia's heart is not where it needs to be to keep her functioning. It started with a blood test at the pediatrician's to see where her lead levels are. He noticed her blood was darker and her fingers were becoming more clubbed (both signs of lowering oxygen). We emailed her cardiologist at Hopkins and got a response to bring her in the next day (that never happens at Hopkins!)
After a morning of tests, we found that her oxygen levels are now at between 65-70%, a change from the 77-80% she had in May. The doctor told us that the surgeons would review her case and decide on Friday what to do...most likely an intervention to increase the oxygen until a full repair would be done when she was bigger. He wanted to do it in two weeks when the specialist was back in town. They would put a larger shunt in and take pictures of her heart for further diagnostic and potentially close one of the holes in her heart. Well, we were surprised at how quickly we would be getting that done but grateful for Hopkins being close and great Doctors loving her!
Yesterday, though Dr. Thompson called to let us know that on the 16th we will go in for a Cath procedure for diagnostic needs, meet with the surgeons on her case, and then come back in on the 17th for a full repair of her heart. This has caught us by surprise since every doctor up until now has wanted to wait. It is evident that she is in a place where a full repair cannot wait. So, in two weeks, she will have open heart surgery.
Needless to say, we are a bit in shock but at peace with the decision. It is huge but we knew eventually it would happen. We have some things we would love to ask you to pray with us for:
1. Pray that the next two weeks will bring no colds, infections, or further breathing issues for Sophia. We have been asked to watch her closely and keep her calm( those of you who know her see how hard that will be...Sophia is crazy!) If she gets worse, we will need to bring her to the emergency room and get her admitted and the procedures will be moved up. Both the specialist and cardiologist are out of town this week and we just really don't want to have it happen this way. Please pray we do not have to go in before the 16th!
2. Please pray for the boys. Jesse is very sensitive to Sophia and we are already seeing him get a little anxious. Shane is a question asker and wants to understand everything! We really are wanting to ask those around us to come in and love them during this time. They will need you.
3. Please pray for Ben and I as daily we have been learning to parent children with needs and challenges. It is HARD but it is right and God is meeting us as we are fighting with the challenge at times. We are very aware every day that we have NO control. They are HIS and that is good but hard as we open our hands up and hold them open for God do take care of these children He has entrusted to us. We had our fourth wedding anniversary this last week. We have looked back and are amazed at all we have been through and all He has done. We know this is another piece of this Mortenson Chapter in God's greater story and that we want Him to be glorified in this too. Pray that we will be sensitive to the needs of our children and to one another and that our story and family will be a testimony to all that encounter what He is doing.
Just like Shane was last year, Sophia has such a unique spirit and is already impacting her doctors and those watching her journey. We have such amazingly resilient children. They are here for a purpose and these struggles are no mistake.
Thank you for your friendship and care. Please also know that we need you and probably are bad at saying that! I have grown in asking for help but we still feel bad asking. I am not sure how to ask for help at this point but to ask you to pray. We love you all!
Carissa (on behalf of Ben, Shane, Jesse, and Sophia!)