11.9.15

On Thursday November 5th Holden went in for surgery to get a G-tube for feeding, to get his stomach wrapped around itself to prevent reflux, to get a trach, and a circumcision. It was a lot!

Holden right before surgery

It was about a 4-5 hour surgery but it felt much longer sitting in the waiting room! Both surgeons updated us after the surgery and told us that everything went well! We were so happy and so excited to see him because we had never seen his face without tubes and tape on it! When we walked back to his room his eyes were wide open and we could see his whole face! It was the cutest face I had ever seen! We were so shocked to walk in and have him be wide awake looking at us! His strength is so amazing and I am so proud to be his mom. 

Those cheeks!!

Sending your 1 month old into surgery is something I cannot explain. Actually, dealing with all of this in your child's first month of life is something I can't explain. You want to take the pain away from them, help them in anyway you can and there is literally nothing you can do. I can't even hold him to comfort him. But we do our best to let him know we are there for him and to comfort him.

Yesterday we were visiting and he had a rough day so he was heavily medicated and was asleep most of the time. Right before we left he started to make all these new and funny faces. It looked like he was trying to smile. It was so cute! He wasn't really able to make these faces before because of all his tubes and tape! It's the little things. Literally that make our hearts so full! 

Jess kind of got a picture of it! 

 Tomorrow the ENT doctor is going to come check on his trach to make sure it is healing correctly and if it is they are going to change it and we will get to hold him again! It has been 5 days since we've held and I can't wait to have that chunk in my arms! His feeding tube has been healing great and he has been tolerating his feeds and is up to full feeds! 

We are now working on getting him healed and stable so we can take him home. They are also trying to find a perfect dose of medicine for his Myasthenia. This is by far the hardest thing we have been through in our life but it is also the most rewarding. I am so grateful to have him and have the opportunity to see him grow and improve each day! 

We are hoping to have him home by Christmas! It would be the best gift we could ask for!