Mason's Heart

The First Blog.

This is now the new home of updates on Mason and his family. Hopefully, this will be more user-friendly for his parents to update.

Mason has had many developments since his last surgery in March. He is crawling in his own Mason way. He is talking and can say Mama, Dada, Sissy, bye and ball among other words that we can't quite understand yet. He is currently getting his first set of molars - now if he would only learn how to use them for good instead of evil! By this I mean, if only he would use his teeth for eating instead of biting his sister. There has been on more the one occasion that Mason has left teeth marks on Mia's nose. We try to tell her to not get so close to his face but she keeps going back.

Mason is still 100% dependant on a feeding tube for his nutrition. During the last few months, we have tried to make some changes to Mason's feeding schedule and formula and he has not taken to them very well. So, after long debate we went back to his normal formula and made some tweaks to the amount of volume that he gets and how often we feed him. I think we have finally found the combination that works for Mason because he had not gained any weight since his surgery in March until the last few weeks. After two weeks on the new schedule, Mason gained over a pound! That is right - 1 pound 1 oz in two weeks - that brings him to a weight of 18 lbs and 13 oz. We go back in a couple of weeks to make sure that he is still gaining. We have also decided with the help of local doctors that Mason needs a G-tube. This is a tube that will go straight into his stomach rather than routing it through his nose. However, this will require another surgery for Mason which we have tried to avoid. We consulted with a local surgeon and when he spoke to the local anesthesiologists, they recommended that we go back to Ann Arbor, MI for the surgery. We were warned during our last trip to Michigan by the nurse practitioner that a lot of anesthesiologists will not touch children with HLHS due to their unique hearts. So, we have an appointment at Mott Children Hospital on July 26th to consult with the surgeons up there on what the best route is for Mason. We know that he needs the G-tube but there is a possibility that he will need an additional stomach surgery for reflux. We will let the doctors make that decision. It took a long time for us to come to terms with this but it is the best answer for Mason at this time. We will keep working with the Feeding Specialist to get Mason to eat by mouth and we are hopeful that removing the negative effects of the tube from his nose and running down the back of his throat will help him to make progress. Our trip will not only be to the hospital as we hope to be able to spend some time with our Michigan Heart friends, the Lentine's. We miss them terribly and can't wait to see the reunion of Mason and Jillian. They were roommates at Mott for some time and future prom dates!

Well, that is it for now. We are preparing to make our second trip back to Missouri today to visit my family. Mia will be spending the week with Granny and can't be more excited. She packed her own bag last night and it is bursting. I hope she realizes that she is only staying a week rather than the rest of the summer!