Healing Easton's Heart

Easton Kent Holden was born prematurely at West Penn Hospital in Pittsburgh, PA on July 28, 2014 weighing only 4lbs 1oz and 17 1/2 inches long. He was transferred to Children's Hospital in Pittsburgh, PA on August 1, 2014. Where he is under the special care for his heart as he has had 2 heart surgeries already for a narrowing in his arch and Norwood Procedure along with other medical issues (trisomy 21). It is anticipated that his stay may be for next several months depending on how well he does with his recovery and any upcoming surgeries that are anticipated in the near future. 

September 5, 2014

As we update everyone our son is continues to be the strong little guy he is another cpap trial was done earlier today and a second at 4 really hoping it means that he is going to be off the ventilator soon but as everyone tells us slow and steady I hate that we haven't been able to hold him since August 8, 2014. I enjoy being able to watch him but it's nothing like being able to hold 
him. 

September 6, 2014 

Well Cpap trials are not going as well as we like so that has meant adjustments in his sedation and drips still trying to stay optimistic that he is a fighter and isn't giving up! It does give me comfort that everyone that is working with him are truly great people it certainly takes a village to care for a child :) we are in our village both here and of course from the support of all our family and friends :) I myself have been trying to ask questions but overwhelmed I do know specifically Easton is diagnosed HYPOPLASTIC LEFT HEART SYNDROME which is a rare congenital heart defect in which his left ventricle of the heart is severely underdeveloped much more than what we  originally thought as we were told AV canal defect we know for certain he will have at least 2 more surgeries which are the Glen and Hemi-Fontan procedures. I of course look this diagnosis up and it saddens me but I am trying to stay strong he needs me and his daddy strong. I want to try and keep you all updated more cpap trials will be done and they are looking to switch over from fentanyl drip to morphine to keep him comfortable. I want to also include pics but have had to message site and waiting on a response because it is not letting me :( 

September 7, 2014

Another Cpap trial was done at 4am didn't do all that great again plan on being there for rounds where the doctors discuss what they will be doing for the day. Keep you updated the best I can. 

During rounds with the doctors they are planning on doing another echo so the ventilator is not coming off they did the mapleson bag with the cpap instead of vent he can breath on his own and breathes above the ventilator but his breathing was more shallow than they want. He does have a pacer that is helping give him that little extra boost so he can get better profusion. He still needs more time on ventilator so the focus is continued rest. The wound vac will be changed again tomorrow we still have no timeframe when they will be officially removed. 
Our nurse today Chelsea provided me with some papers describing the procedures and diagrams of his particular defect. It in fact is a miracle what they have been able to do for him so far. 

Our tough little guy resting this was from the 5th 


The black is the gauze where the wound vac is able to help him heal more efficiently.