Wear Red for Christian

Tomorrow is wear red for CHD. To show your support for Christian wear red Friday, February 1. Take a picture and you can even hold a sign with something special to big boy and post it on http://www.facebook.com/groups/Christianmatthewssupermanheart/
We want to take the pictures and put in his scrap book to show how much he is loved. You can also email me pictures at ashly.pauley@yahoo.com. Put in the subject picture for Christian

Kicking it at home with mommy and daddy

     Well we have been home for 2 weeks now and I have to say it has been nothing short of amazing. They made us stay an extra night Monday, January 14 and I was beyond frustrated since we were planning on coming home that day. I do understand why we needed to stay; they had just taken Christian off his oxygen flow that morning and needed to monitor his vitals for 24 hours.  It should have been done over the previous weekend, but what I have learned is that nothing is done on the weekends because the doctors do not communicate with each other.  That was one thing we told in our survey that needed to be improved.  We honestly though could not have asked for a better and more caring staff to care for our little man. I really love A. I. Dupont and all the doctors and nurses that work there, but the communication among doctors was bad. He will be getting his button for his g tube this month. His left vocal cord is still paralyzed, there is not much change so we have another appointment with the ENT doctor in April.  He is also enrolled in a development watch program so that we can make sure he is on track with his development, both physical and cognitive.  Since he was in a bed for 7 weeks with little holding he is not holding his head up and is a bit behind. We will also be featured in the hospital wellness to help other parents going through heart surgeries. We are excited for this opportunity to share Christian's journey and the blessings God has given us. Hopefully we can bring a glimmer of hope in a challenging circumstance. Doctor Pizarro also asked us if Christian could be followed to help with other surgeons and diagnoses and procedures. Christian will be among several hundreds of cases, but It proves to me that he truly is a miracle because none of the doctors know what to make of his significant progress after being declared to need a transplant. I know it was my heavenly Father answering thousands upon thousands of prayers all around the world for our little superman. 
      Hunter and I can never express the gratitude we have for every one's prayers especially those from strangers.  The mere fact that people all around the world took interest in our sweet boy warms our heart. We pray that Christian can be a testimony to those with struggles. Sometimes the prayers are answered in a different way, and it may not be the way we want, but it is a way that is perfect in God's greater plans for our life.  I know my son is going to be a great testimony. I tell him everyday that he has to be great for God's plan and purpose in his life.  He is going to know the love of God every day of his life.  We will remind him of how God healed him.  Please continue to pray for strength and courage for our little boy as well as us.  Christian still has a long road ahead of him, but we continue to trust in God and his plan for our family.

Home Sweet Home

Hunter and I started to do Christian's feeds and medicine. He has done really well on feeding through the g-tube. Finally November 15, 2013 we were able to take our sweet boy home. He was 7 weeks old exactly. It was the best day!! He is enjoying getting familiar with everything. We had a bit of a rough night, but we think it was due to, not just new bed and surroundings, but he had not had a good BM. He finally gave us a good full diaper today and he seems much more content. We did have an appointment with ENT doctor yesterday and Christian's left vocal cord is still paralyzed. Please pray this corrects itself. Also pray for us, that God gives us wisdom in caring for our special boy. We continue to thank God for all the miracles he is doing with our superman.

Feeding

Christian's g-tube and Nessin procedure went well. The Nessin is tightening of his esophagus so that he is unable to reflux causing him to aspirate into his lungs. There has been no reflux since the surgery :) He has been in a constant feed to his g-tube since Saturday. They started with pedialite and are now doing breast milk. He is tolerating it all very well. He does have gas build up in his belly and it is causing him to be fussy since he is not us to that feeling. The g-tube was biggwr than what Hunter and i anticipated, but we are glad it seems to be working for his feeds. Hopefully in a month they will put the button and he wont have the bulky tube. He is still in the CICU to watch his vitals closely during this time. He should be going back to his regular room in the next few days. Hopefully they will be working on getting us discharged soon. God continues to answer prayers.

Waiting game

Christian did not recieve the nesin, tightening of the esophagus to help with his reflux irritating his paralyzed vocal cord and prevent aspirating into his lungs, and the g-tube Wednesday due to lack of staff in the CICU for his recovery.  He is scheduled for it tomorrow, Friday, January 4, 2013.  Please continue to pray for him.  They will slowly introduce milk and increase as long as he tolerates it.  Pray for a speedy recovery and a smooth surgery.  He has a problem with his oxygen levels when he goes under, so we expect him to be in the CICU for a few days until his levels are stable, but God has worked so many other miracles just pray he does really well.  Thank you for the continued support and prayer.  He is doing very well, even pooped on mommy today :)