Emotional Journey

Today (Saturday) was one of the last of the critical days for Xavier, and he made it through with flying colors!  Despite all that he has been through this week he looks amazing!  He just looks so much healthier already!  We definitely aren't through with our journey here in Pittsburgh Children's Hospital by any means.  We still have to tackle his feeding issues.  We are praying that they have gone away with the fixing of his heart.  We will find out in the next 48 hours is that is the case or not.  If he continues having a difficult time feeding then we will have to investigate if it's an stomach/intestinal issue.  Please keep him in your prayers for that! 

This has been one of the most emotionally trying times in my life thus far.  I have joined a group called Mended Little Hearts of Southwestern PA through Facebook.  Shockingly 2 other moms of this group are actually here with me tonight.  Their children are in the rooms next to me going through so much more than what Xavier has gone through.  I was able to spend some time conversing with them, sharing stories of our journeys and how we got to where we are today with them.  As my sister-in-law, Cindy,  wrote on her FB this evening "We compared stories of battles fought and won, and those yet to come. I believe much of the parents strength can be found in each other during their stay here. There is something about knowing that someone else knows what you are going through, and has felt the feelings from fear to joy that you have been feeling. It appears to me that all 3 mothers who sat talking to each other today found comfort and solace in the conversation, and knowledge that just down the hall are 2 other moms who are also walking your same path"  Cindy writes it so well~it's not just another person to tell your story to or even compare what someone had gone through and is done dealing with, but someone who is actually, at that very moment, going through it with you with their child.  I was invited to go to lunch with the fellow Heart Moms tomorrow (Sunday) with several others who are traveling and meeting for lunch just for encouragement! 

One of my long term fears for Xavier was the possible fact that he may never be able to play a contact sport like those other moms who shared with me that their sons will never be able to do.  I know it seems silly to think about, but he is my only boy and to not be able to go see him play baseball, soccer, football, or even basketball would break my heart.  I am in no way saying my girls can't because if you know me I love playing sports and will encourage my girls to do the same, but it's just something about having a son be able to take part in those activities as well.  I did speak with the surgeon about the possibility of that for Xavier in the future, and he reassured me that Xavier will be a typical child and be able to play sports and not have restrictions!  I was able to breath a huge sigh of relief!  Maybe a future line backer for the Patriots?!?! :)

Today (Saturday) as the nurses were weaning him off of the breathing tube, sedation, and paralytic, he was reacting as most babies do~freaking out.  They slowly are realizing something is stuck down their throat and they are unable to move for the most part.  Xavier's blood pressure was spiking and his face was turning red/purple!  That was extremely frightening to watch as your child wants to scream and just can't!  We had to leave the room because the more he heard us talking or even the feeling of touch would set him off.  The feeling of sadness that in a way I am causing him stress, but also the thought of the possibility something going wrong while you aren't there just consume you.  Words can't describe all the emotions that have run through my body watching him lie there in every step through his journey! 

In all honesty, there is no way that I could have gotten through this journey without curling up in a corner and crying non-stop if it weren't for my faith and trust in God.  He promises that if we are faithful He will carry our burdens.  That is such an amazing promise, why would I not want to trust Him?!?